MentalHealthCE Login
Not registered? Create an account now or when you purchase, to maintain a CE history.
| Login |
Healthcare Training Institute - Quality Education since 1979
CE for Psychologist, Social Worker, Counselor, & MFT!!
ASD - Recent Articles
Probiotics in autism spectrum disorder: Recent insights from animal models
- April 26, 2024
Autism, Ahead of Print.
Autism spectrum disorder is a neurodevelopmental disorder characterized by a wide range of behavioral alterations, including impaired social interaction and repetitive behaviors. Numerous pharmacological interventions have been developed for autism spectrum disorder, often proving ineffective and accompanied by a multitude of side effects. The gut microbial alterations observed in individuals with autism spectrum disorder, including elevated levels of Bacteroidetes, Firmicutes, and Proteobacteria, as well as reduced levels of Bifidobacterium, provide a basis for further investigation. Recent preclinical studies have shown favorable outcomes with probiotic therapy, including improvements in oxidative stress, anti-inflammatory effects, regulation of neurotransmitters, and restoration of microbial balance. The aim of this review is to explore the potential of probiotics for the management and treatment of autism spectrum disorder, by investigating insights from recent studies in animals.Lay abstractAutism spectrum disorder is a neurodevelopmental disorder characterized by a wide range of behavioral alterations, including impaired social interaction and repetitive behaviors. Numerous pharmacological interventions have been developed for autism spectrum disorder, often proving ineffective and accompanied by a multitude of side effects. The gut microbiota is the reservoir of bacteria inhabiting our gastrointestinal tract. The gut microbial alterations observed in individuals with autism spectrum disorder, including elevated levels of Bacteroidetes, Firmicutes, and Proteobacteria, as well as reduced levels of Bifidobacterium, provide a basis for further investigation into the role of the gut microbiota in autism spectrum disorder. Recent preclinical studies have shown favorable outcomes with probiotic therapy, including improvements in oxidative stress, anti-inflammatory effects, regulation of neurotransmitters, and restoration of microbial balance. The aim of this review is to explore the potential of probiotics for the management and treatment of autism spectrum disorder, by investigating insights from recent studies in animals.
Autism, Ahead of Print.
Autism spectrum disorder is a neurodevelopmental disorder characterized by a wide range of behavioral alterations, including impaired social interaction and repetitive behaviors. Numerous pharmacological interventions have been developed for autism spectrum disorder, often proving ineffective and accompanied by a multitude of side effects. The gut microbial alterations observed in individuals with autism spectrum disorder, including elevated levels of Bacteroidetes, Firmicutes, and Proteobacteria, as well as reduced levels of Bifidobacterium, provide a basis for further investigation. Recent preclinical studies have shown favorable outcomes with probiotic therapy, including improvements in oxidative stress, anti-inflammatory effects, regulation of neurotransmitters, and restoration of microbial balance. The aim of this review is to explore the potential of probiotics for the management and treatment of autism spectrum disorder, by investigating insights from recent studies in animals.Lay abstractAutism spectrum disorder is a neurodevelopmental disorder characterized by a wide range of behavioral alterations, including impaired social interaction and repetitive behaviors. Numerous pharmacological interventions have been developed for autism spectrum disorder, often proving ineffective and accompanied by a multitude of side effects. The gut microbiota is the reservoir of bacteria inhabiting our gastrointestinal tract. The gut microbial alterations observed in individuals with autism spectrum disorder, including elevated levels of Bacteroidetes, Firmicutes, and Proteobacteria, as well as reduced levels of Bifidobacterium, provide a basis for further investigation into the role of the gut microbiota in autism spectrum disorder. Recent preclinical studies have shown favorable outcomes with probiotic therapy, including improvements in oxidative stress, anti-inflammatory effects, regulation of neurotransmitters, and restoration of microbial balance. The aim of this review is to explore the potential of probiotics for the management and treatment of autism spectrum disorder, by investigating insights from recent studies in animals.
Research methods at the intersection of gender diversity and autism: A scoping review
- April 25, 2024
Autism, Ahead of Print.
Research has increasingly focused on the intersection between gender diversity and autism. Understanding the foci, methods, and rigor of recent studies could help guide and maximize impact in this accelerating research area. We conducted a scoping review of peer-reviewed literature on this topic published between 2018 and 2023. The search generated 1432 records after deduplication. Included studies (N = 84) were of English language, featured original qualitative or quantitative findings, and examined a psychosocial connection between autism and gender spectra variables. Autism prevalence among gender-diverse people was the most-studied sub-topic. Methodological rigor was acceptable overall; however, we identified recurrent threats to generalizability and validity, including inconsistent conceptualization of constructs (e.g. gender dysphoria), weak participant sampling and characterization, and reliance on unvalidated measures. Addressing these limitations and meaningfully engaging with community shareholders will be critical to enhancing the replicability and clinical impact of future research.Lay AbstractResearch has increasingly focused on the intersection between gender diversity and autism. To better understand this literature, this scoping review systematically searched five databases for peer-reviewed literature on gender diversity and autism published between 2018 and 2023. Included studies (N = 84) were of English language, featured original qualitative or quantitative findings, and examined a psychosocial connection between autism and gender spectra variables. Most studies focused on measuring prevalence of autism among gender-diverse individuals. While the overall study rigor was acceptable, weaknesses in measurement, sample selection, and definition of key terms were noted. Promisingly, studies in this area appear to be shifting away from a pathologizing lens and towards research methods that engage in meaningful collaboration with the autistic, gender-diverse community to investigate how to best enhance the quality of life and wellbeing of this population.
Autism, Ahead of Print.
Research has increasingly focused on the intersection between gender diversity and autism. Understanding the foci, methods, and rigor of recent studies could help guide and maximize impact in this accelerating research area. We conducted a scoping review of peer-reviewed literature on this topic published between 2018 and 2023. The search generated 1432 records after deduplication. Included studies (N = 84) were of English language, featured original qualitative or quantitative findings, and examined a psychosocial connection between autism and gender spectra variables. Autism prevalence among gender-diverse people was the most-studied sub-topic. Methodological rigor was acceptable overall; however, we identified recurrent threats to generalizability and validity, including inconsistent conceptualization of constructs (e.g. gender dysphoria), weak participant sampling and characterization, and reliance on unvalidated measures. Addressing these limitations and meaningfully engaging with community shareholders will be critical to enhancing the replicability and clinical impact of future research.Lay AbstractResearch has increasingly focused on the intersection between gender diversity and autism. To better understand this literature, this scoping review systematically searched five databases for peer-reviewed literature on gender diversity and autism published between 2018 and 2023. Included studies (N = 84) were of English language, featured original qualitative or quantitative findings, and examined a psychosocial connection between autism and gender spectra variables. Most studies focused on measuring prevalence of autism among gender-diverse individuals. While the overall study rigor was acceptable, weaknesses in measurement, sample selection, and definition of key terms were noted. Promisingly, studies in this area appear to be shifting away from a pathologizing lens and towards research methods that engage in meaningful collaboration with the autistic, gender-diverse community to investigate how to best enhance the quality of life and wellbeing of this population.
Identifying autistic children: Priorities for research arising from a systematic review of parents’ experiences of the assessment process
- April 25, 2024
Autism, Ahead of Print.
Our goal was to systematically identify, appraise and synthesise the qualitative research on parents’ experiences of the autism assessment process. The empirical studies were quality appraised using the Critical Appraisal Skills Programme tool. We synthesised the data using a meta-synthesis approach. Parents’ experiences were categorised into four phases namely: the pre-identification phase, the identification process, emotional reactions to the identification of the children as autistic and the post-identification phase. Informed by the social and human rights discourse on disability, we provide recommendations for future research, respecting the rights of all concerned. We discuss the implications of this review for future research into the autism assessment process. Parents consistently mentioned the importance of professional communication and we make recommendations for research on parent–professional partnerships. Given the sensitivities of the issues, we draw attention to ethical considerations when conducting research on the autism assessment process. Finally, we address the strategies that professionals can adopt in applying neurodiversity-affirmative approaches when identifying autistic children and supporting their parents.Lay AbstractHearing about parents’ experiences of having their child recognised as autistic could help improve the supports offered to parents. Our article may also help guide future research on this topic. We made a list of the type of research that interested us. We searched the studies already completed, only studying the research that matched our interests. After reading the studies, we rated their quality using the Critical Appraisal Skills Programme tool.It became clear that parents went through four phases during the identification process. The first phase occurred before their child was identified as autistic. The second involved the actual assessment of their child. Parents’ emotional reactions to the news were the focus of the third phase. The final phase occurred after their child was identified as autistic. We discuss the findings of our research. As there are sensitivities involved in conducting research on this topic, we identify how researchers can ensure that their research is of the best quality. We are committed to respecting the human rights of all involved, so we emphasise the need for professionals to develop good relationships with the parents of autistic children. Researchers have recently come to see autism as typical of human diversity. We encourage the professionals involved to adopt this understanding of autistic children and make practical suggestions to enable them to do so.
Autism, Ahead of Print.
Our goal was to systematically identify, appraise and synthesise the qualitative research on parents’ experiences of the autism assessment process. The empirical studies were quality appraised using the Critical Appraisal Skills Programme tool. We synthesised the data using a meta-synthesis approach. Parents’ experiences were categorised into four phases namely: the pre-identification phase, the identification process, emotional reactions to the identification of the children as autistic and the post-identification phase. Informed by the social and human rights discourse on disability, we provide recommendations for future research, respecting the rights of all concerned. We discuss the implications of this review for future research into the autism assessment process. Parents consistently mentioned the importance of professional communication and we make recommendations for research on parent–professional partnerships. Given the sensitivities of the issues, we draw attention to ethical considerations when conducting research on the autism assessment process. Finally, we address the strategies that professionals can adopt in applying neurodiversity-affirmative approaches when identifying autistic children and supporting their parents.Lay AbstractHearing about parents’ experiences of having their child recognised as autistic could help improve the supports offered to parents. Our article may also help guide future research on this topic. We made a list of the type of research that interested us. We searched the studies already completed, only studying the research that matched our interests. After reading the studies, we rated their quality using the Critical Appraisal Skills Programme tool.It became clear that parents went through four phases during the identification process. The first phase occurred before their child was identified as autistic. The second involved the actual assessment of their child. Parents’ emotional reactions to the news were the focus of the third phase. The final phase occurred after their child was identified as autistic. We discuss the findings of our research. As there are sensitivities involved in conducting research on this topic, we identify how researchers can ensure that their research is of the best quality. We are committed to respecting the human rights of all involved, so we emphasise the need for professionals to develop good relationships with the parents of autistic children. Researchers have recently come to see autism as typical of human diversity. We encourage the professionals involved to adopt this understanding of autistic children and make practical suggestions to enable them to do so.
Using a visual support package to facilitate independent leisure engagement and choice-making for individuals with moderate to severe autism in Taiwan
- April 23, 2024
Autism, Ahead of Print.
Self-determination is a complex process with several components, such as making choices and independence. However, limited research on self-determination has focused on individuals with moderate to severe autism spectrum disorder. This study aimed to support independent leisure engagement and choice-making of leisure activities for this population by using a visual support intervention package, including the use of a visual activity schedule, video modeling, structured environment, preference assessment, and prompt procedures. The study used a single case research multiple baseline probe design to test the effectiveness of the intervention on three adults with autism spectrum disorder. Findings showed that implementing the visual support package was effective in promoting independent leisure engagement and facilitating choice-making of leisure activities. The study highlights the need for and advantages of incorporating video modeling and preference assessment into the visual activity schedule for this particular population.Lay AbstractSelf-determination encompasses various components, including decision-making and independence, making it a complex process. While the importance of self-determination for individuals with autism spectrum disorder has been explored in previous studies, there is limited research focusing on individuals with moderate to severe autism spectrum disorder. Evidence-based practices such as visual activity schedules and video modeling have shown effectiveness in promoting independence among individuals with autism spectrum disorder. To address the need for independence and choice-making among individuals with moderate to severe autism spectrum disorder, this study developed a visual support package incorporating visual activity schedules, video modeling, preference assessments, and prompt procedures. By investigating the intervention’s effectiveness in three participants, this study contributes to the existing literature on the use of a visual activity schedule and video modeling in enhancing choice-making and independent leisure engagement. Following the intervention, all participants were able to select three leisure activities, develop their own visual schedules, and complete them. Notably, this study conducted preference assessments to determine participants’ preferred leisure activities and did not provide additional reinforcement. Practical implications of this research include incorporating video prompting as needed and adjusting activity engagement time. Future research should explore the long-term effectiveness of the visual support package and its application in developing novel skills or vocational activities for individuals with moderate to severe autism spectrum disorder. This study fills a critical gap in the literature, providing important insights for practices and research in the field of autism spectrum disorder interventions.
Autism, Ahead of Print.
Self-determination is a complex process with several components, such as making choices and independence. However, limited research on self-determination has focused on individuals with moderate to severe autism spectrum disorder. This study aimed to support independent leisure engagement and choice-making of leisure activities for this population by using a visual support intervention package, including the use of a visual activity schedule, video modeling, structured environment, preference assessment, and prompt procedures. The study used a single case research multiple baseline probe design to test the effectiveness of the intervention on three adults with autism spectrum disorder. Findings showed that implementing the visual support package was effective in promoting independent leisure engagement and facilitating choice-making of leisure activities. The study highlights the need for and advantages of incorporating video modeling and preference assessment into the visual activity schedule for this particular population.Lay AbstractSelf-determination encompasses various components, including decision-making and independence, making it a complex process. While the importance of self-determination for individuals with autism spectrum disorder has been explored in previous studies, there is limited research focusing on individuals with moderate to severe autism spectrum disorder. Evidence-based practices such as visual activity schedules and video modeling have shown effectiveness in promoting independence among individuals with autism spectrum disorder. To address the need for independence and choice-making among individuals with moderate to severe autism spectrum disorder, this study developed a visual support package incorporating visual activity schedules, video modeling, preference assessments, and prompt procedures. By investigating the intervention’s effectiveness in three participants, this study contributes to the existing literature on the use of a visual activity schedule and video modeling in enhancing choice-making and independent leisure engagement. Following the intervention, all participants were able to select three leisure activities, develop their own visual schedules, and complete them. Notably, this study conducted preference assessments to determine participants’ preferred leisure activities and did not provide additional reinforcement. Practical implications of this research include incorporating video prompting as needed and adjusting activity engagement time. Future research should explore the long-term effectiveness of the visual support package and its application in developing novel skills or vocational activities for individuals with moderate to severe autism spectrum disorder. This study fills a critical gap in the literature, providing important insights for practices and research in the field of autism spectrum disorder interventions.
Probing heterogeneity to identify individualized treatment approaches in autism: Specific clusters of executive function challenges link to distinct co-occurring mental health problems
- April 20, 2024
Autism, Ahead of Print.
Mental health conditions such as anxiety, depression, aggression, and inattention are common in autistic youth and are challenging to treat by community providers. We aim to parse the heterogeneity of autism based on dimensions of executive function and determine whether specific executive function profiles are differentially related to psychiatric symptoms. Parents of 397 well-characterized 8–14-year-old autistic children without an intellectual disability reported on their child’s executive function skills and psychiatric symptoms. We applied a data-driven, graph theory-based, community-detection approach to a common executive function measure, revealing three distinct executive function profile subgroups. Despite having similar social challenges, the executive function subgroups differed on anxiety, aggression, affect, and inattention symptoms. Results support the need for more intensive subtyping with autistic youth to develop appropriate, individualized mental health treatments and supports. Characterizing youth through neurocognitive strengths and challenges can guide the development of precision medicine, allowing for more meaningful, specialized treatment.Lay AbstractMany autistic people struggle with mental health problems like anxiety, depression, inattention, and aggression, which can be challenging to treat. Executive function challenges, which impact many autistic individuals, may serve as a risk factor for mental health problems or make treating mental health conditions more difficult. While some people respond well to medication or therapy, others do not. This study tried to understand if there are different subgroups of autistic young people who may have similar patterns of executive function strengths and challenges—like flexibility, planning, self-monitoring, and emotion regulation. Then, we investigated whether executive function subgroups were related to mental health problems in autistic youth. We found three different types of executive function subgroups in autistic youth, each with different patterns of mental health problems. This helps us identify specific profiles of executive function strengths and challenges that may be helpful with identifying personalized supports, services, and treatment strategies for mental health conditions.
Autism, Ahead of Print.
Mental health conditions such as anxiety, depression, aggression, and inattention are common in autistic youth and are challenging to treat by community providers. We aim to parse the heterogeneity of autism based on dimensions of executive function and determine whether specific executive function profiles are differentially related to psychiatric symptoms. Parents of 397 well-characterized 8–14-year-old autistic children without an intellectual disability reported on their child’s executive function skills and psychiatric symptoms. We applied a data-driven, graph theory-based, community-detection approach to a common executive function measure, revealing three distinct executive function profile subgroups. Despite having similar social challenges, the executive function subgroups differed on anxiety, aggression, affect, and inattention symptoms. Results support the need for more intensive subtyping with autistic youth to develop appropriate, individualized mental health treatments and supports. Characterizing youth through neurocognitive strengths and challenges can guide the development of precision medicine, allowing for more meaningful, specialized treatment.Lay AbstractMany autistic people struggle with mental health problems like anxiety, depression, inattention, and aggression, which can be challenging to treat. Executive function challenges, which impact many autistic individuals, may serve as a risk factor for mental health problems or make treating mental health conditions more difficult. While some people respond well to medication or therapy, others do not. This study tried to understand if there are different subgroups of autistic young people who may have similar patterns of executive function strengths and challenges—like flexibility, planning, self-monitoring, and emotion regulation. Then, we investigated whether executive function subgroups were related to mental health problems in autistic youth. We found three different types of executive function subgroups in autistic youth, each with different patterns of mental health problems. This helps us identify specific profiles of executive function strengths and challenges that may be helpful with identifying personalized supports, services, and treatment strategies for mental health conditions.
Camouflaging, not sensory processing or autistic identity, predicts eating disorder symptoms in autistic adults
- April 18, 2024
Autism, Ahead of Print.
The objective of this study was to explore the role that Autistic identity, sensory processing and camouflaging behaviours have on eating disorder symptomology in Autistic adults. Previous research has focused on cognitive and sensory factors to explain the association between autism and eating disorders, but the roles of social identity and camouflaging are yet to be explored. Autistic participants (N = 180) were recruited from NHS settings and community groups. The participants completed online questionnaires measuring autistic identity, camouflaging behaviours, sensory processing, autistic traits and eating disorder symptoms. Multiple regression revealed that camouflaging significantly predicted eating disorder symptoms. Although sensory processing was related, it did not significantly predict eating disorder symptom severity. In addition, there was no significant relationship between autistic identity and eating disorder symptom severity. This study highlights the impact that camouflaging behaviours and sensory processing can have on eating disorder symptomatology in autism and may indicate important considerations for the treatment of eating disorders in Autistic people.Lay AbstractThis study aimed to explore the impact of Autistic identity (i.e. feeling like you belong to the Autistic community), sensory profiles (e.g. being over or under responsive to sensations) and camouflaging behaviours (i.e. masking) on eating disorder symptoms in Autistic adults. 180 Autistic people were recruited from the community and NHS. The Autistic people completed online questionnaires measuring Autistic identity, sensory profiles, camouflaging behaviours, autistic traits and eating disorder symptoms. The analysis showed that higher levels of camouflaging behaviour predicted higher levels of eating disorder symptoms. Sensory profiles were related to but did not predict eating disorder symptoms and there was no relationship between level of Autistic identity and eating disorder symptoms. This shows that camouflaging is the most important predictor of eating disorder symptoms in Autistic people, and warrants further exploration.
Autism, Ahead of Print.
The objective of this study was to explore the role that Autistic identity, sensory processing and camouflaging behaviours have on eating disorder symptomology in Autistic adults. Previous research has focused on cognitive and sensory factors to explain the association between autism and eating disorders, but the roles of social identity and camouflaging are yet to be explored. Autistic participants (N = 180) were recruited from NHS settings and community groups. The participants completed online questionnaires measuring autistic identity, camouflaging behaviours, sensory processing, autistic traits and eating disorder symptoms. Multiple regression revealed that camouflaging significantly predicted eating disorder symptoms. Although sensory processing was related, it did not significantly predict eating disorder symptom severity. In addition, there was no significant relationship between autistic identity and eating disorder symptom severity. This study highlights the impact that camouflaging behaviours and sensory processing can have on eating disorder symptomatology in autism and may indicate important considerations for the treatment of eating disorders in Autistic people.Lay AbstractThis study aimed to explore the impact of Autistic identity (i.e. feeling like you belong to the Autistic community), sensory profiles (e.g. being over or under responsive to sensations) and camouflaging behaviours (i.e. masking) on eating disorder symptoms in Autistic adults. 180 Autistic people were recruited from the community and NHS. The Autistic people completed online questionnaires measuring Autistic identity, sensory profiles, camouflaging behaviours, autistic traits and eating disorder symptoms. The analysis showed that higher levels of camouflaging behaviour predicted higher levels of eating disorder symptoms. Sensory profiles were related to but did not predict eating disorder symptoms and there was no relationship between level of Autistic identity and eating disorder symptoms. This shows that camouflaging is the most important predictor of eating disorder symptoms in Autistic people, and warrants further exploration.
“I have to charge my social battery”: Perspectives from autistic young adults on Quality of Life
- April 17, 2024
Autism, Ahead of Print.
Several studies report on lower quality of life for autistic people when compared to non-autistic people. However, there are ongoing discussions about the conceptualization of quality of life for the autistic population. This qualitative study investigated self-perceived quality of life in the context of autistic young adults’ everyday lives. Participants (age range 21–29 years) were recruited from a 10-year follow-up study, Lillehammer Neurodevelopmental Follow-up Study, all diagnosed in childhood and adolescence. Fourteen individual in-depth interviews were conducted. When asked about what was important for having a good quality of life, our autistic participants described relationships to people and pets as important, as well as having meaningful activities. Specific interests had guided many to their choice of both academic and work career. Many also described obstacles in their environment that had influenced their quality of life negatively, such as being misunderstood by teachers and other professionals, being bullied, and sensory and emotional overload. Our findings indicate that those in supportive roles should provide help with establishing connections to activities and people/animals, as this seems to be essential for creating a good quality of life. Taking advantage of passions and interests can create opportunities for autistic people. Findings suggest that future research should address the communication barriers between autistic people and professionals that can lead to misunderstandings.Lay abstractIn this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21–29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved.
Autism, Ahead of Print.
Several studies report on lower quality of life for autistic people when compared to non-autistic people. However, there are ongoing discussions about the conceptualization of quality of life for the autistic population. This qualitative study investigated self-perceived quality of life in the context of autistic young adults’ everyday lives. Participants (age range 21–29 years) were recruited from a 10-year follow-up study, Lillehammer Neurodevelopmental Follow-up Study, all diagnosed in childhood and adolescence. Fourteen individual in-depth interviews were conducted. When asked about what was important for having a good quality of life, our autistic participants described relationships to people and pets as important, as well as having meaningful activities. Specific interests had guided many to their choice of both academic and work career. Many also described obstacles in their environment that had influenced their quality of life negatively, such as being misunderstood by teachers and other professionals, being bullied, and sensory and emotional overload. Our findings indicate that those in supportive roles should provide help with establishing connections to activities and people/animals, as this seems to be essential for creating a good quality of life. Taking advantage of passions and interests can create opportunities for autistic people. Findings suggest that future research should address the communication barriers between autistic people and professionals that can lead to misunderstandings.Lay abstractIn this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21–29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved.
Self-perceived bullying victimization in pre-adolescents on the autism spectrum: EPINED study
- April 16, 2024
Autism, Ahead of Print.
Autistic individuals are at increased risk of experiencing various forms of victimization during their lifespan. This study analyses the self-reported prevalence of bullying victimization in autistic pre-adolescents and those with subthreshold autistic traits in comparison with peers without neurodevelopmental conditions. The sample was comprised of 323 participants (11 and 12 years old; 45 with autism or subthreshold autistic traits) from Spanish general education schools. The assessment protocol included psychopathological (autism characteristics and co-occurrent problems), cognitive and academic characteristics. Bullying victimization was self-reported by the pre-adolescents themselves using the Bullying and School Violence Questionnaire (Acoso y violencia escolar). Autistic participants (57.9%) and those with subthreshold autistic traits (26.9%) showed a higher rate of bullying victimization in comparison with their peers (18.3%). Bullying rates were more frequent and severe and were characterized by intimidation and social exclusion behaviours. These problems were associated with greater intensity of restrictive and repetitive behaviours and with more co-occurring behavioural and emotional problems. We did not find any association with other individual or family factors. Our data reveal the greater risk of bullying behaviours among autistic young people and those with subthreshold autistic traits, which implies the need for detection and establishment of protocols to prevent consequences for their mental health and quality of life.Lay abstractAutistic individuals face a higher risk of various forms of victimization throughout their lives, with bullying being especially prevalent during their school years. Previous studies indicate that autistic children are 2.4 times more likely to be bullied than their typically developing peers and twice as vulnerable as those with other disabilities. However, the extent of this issue among Spanish schoolchildren with autism remains unexplored. In addition, there is no information regarding the presence of bullying victimization in children with marked but undiagnosed autistic traits (i.e. subthreshold autistic traits). This study examines the self-reported prevalence of bullying victimization in autistic pre-adolescents and those with subthreshold autistic traits, comparing them with peers without neurodevelopmental conditions. The study involved 323 participants (11 and 12 years old; 45 with autism or subthreshold autistic traits) from Spanish general education schools. The results revealed a higher rate of bullying victimization among autistic participants (58%; 3.1 times higher risk) and those with subthreshold autistic traits (27%; 1.5 times higher risk) compared with their peers without neurodevelopmental conditions (18.3%). Victimization was linked to more intense restrictive behaviours and increased behavioural and emotional problems. No significant associations were found with other individual or family factors. Our findings underscore the heightened risk of bullying faced by autistic pre-adolescents and those with subthreshold autistic traits at school, emphasizing the need to identify and implement preventive measures to mitigate bullying and its detrimental impact on their mental well-being and overall quality of life.
Autism, Ahead of Print.
Autistic individuals are at increased risk of experiencing various forms of victimization during their lifespan. This study analyses the self-reported prevalence of bullying victimization in autistic pre-adolescents and those with subthreshold autistic traits in comparison with peers without neurodevelopmental conditions. The sample was comprised of 323 participants (11 and 12 years old; 45 with autism or subthreshold autistic traits) from Spanish general education schools. The assessment protocol included psychopathological (autism characteristics and co-occurrent problems), cognitive and academic characteristics. Bullying victimization was self-reported by the pre-adolescents themselves using the Bullying and School Violence Questionnaire (Acoso y violencia escolar). Autistic participants (57.9%) and those with subthreshold autistic traits (26.9%) showed a higher rate of bullying victimization in comparison with their peers (18.3%). Bullying rates were more frequent and severe and were characterized by intimidation and social exclusion behaviours. These problems were associated with greater intensity of restrictive and repetitive behaviours and with more co-occurring behavioural and emotional problems. We did not find any association with other individual or family factors. Our data reveal the greater risk of bullying behaviours among autistic young people and those with subthreshold autistic traits, which implies the need for detection and establishment of protocols to prevent consequences for their mental health and quality of life.Lay abstractAutistic individuals face a higher risk of various forms of victimization throughout their lives, with bullying being especially prevalent during their school years. Previous studies indicate that autistic children are 2.4 times more likely to be bullied than their typically developing peers and twice as vulnerable as those with other disabilities. However, the extent of this issue among Spanish schoolchildren with autism remains unexplored. In addition, there is no information regarding the presence of bullying victimization in children with marked but undiagnosed autistic traits (i.e. subthreshold autistic traits). This study examines the self-reported prevalence of bullying victimization in autistic pre-adolescents and those with subthreshold autistic traits, comparing them with peers without neurodevelopmental conditions. The study involved 323 participants (11 and 12 years old; 45 with autism or subthreshold autistic traits) from Spanish general education schools. The results revealed a higher rate of bullying victimization among autistic participants (58%; 3.1 times higher risk) and those with subthreshold autistic traits (27%; 1.5 times higher risk) compared with their peers without neurodevelopmental conditions (18.3%). Victimization was linked to more intense restrictive behaviours and increased behavioural and emotional problems. No significant associations were found with other individual or family factors. Our findings underscore the heightened risk of bullying faced by autistic pre-adolescents and those with subthreshold autistic traits at school, emphasizing the need to identify and implement preventive measures to mitigate bullying and its detrimental impact on their mental well-being and overall quality of life.
“A perfect storm”: Autistic experiences of menopause and midlife
- April 16, 2024
Autism, Ahead of Print.
Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada (n = 13) or the United Kingdom (n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone.Lay abstractPrevious studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.
Autism, Ahead of Print.
Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada (n = 13) or the United Kingdom (n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone.Lay abstractPrevious studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.
Putting autism research in social contexts
- April 10, 2024
Autism, Ahead of Print.
Autism, Ahead of Print.
The impact of educational and medical systems on autistic children from multilingual American homes: A systematic review
- April 10, 2024
Autism, Ahead of Print.
Research has demonstrated that multilingual exposure does not inherently impede language development or academic achievement in autistic children. Nevertheless, autistic students who are multilingual learners may experience unique challenges in the United States, where systemic barriers constrain both the diagnosis and the delivery of education. This review synthesizes 46 US-based studies to assess how educational and, to a lesser extent, medical systems are (or are not) prepared to offer adequate support to autistic individuals from multilingual families. Results reveal varied patterns of systemic inequity faced by multilingual children on the autism spectrum, elucidating the issues of disproportionality as well as unequal access to educational and medical resources. While the majority of studies emphasize the benefits of multilingual environments for autistic students, a persistent trend in favor of monolingual instructional strategies remains. Despite this, emerging publications present experimental evidence that drawing on students’ first languages can bolster academic and behavioral performance and strengthen executive functioning.Lay AbstractResearch has found that autistic children can navigate multilingual schools and communities without harming their language skills or school success. However, they may encounter specific challenges within the United States, where educational and healthcare systems are insufficiently equipped to meet their needs. This review examined 46 US-based studies on the topic and findings reveal persistent deficit-based ideas about multilingualism and autism (e.g., professionals recommending that autistic students only speak and learn in English) accompanied by patterns of unequal identification of autism among multilingual children. These findings highlight issues of disproportionality and inadequate access to educational and healthcare resources. However, recent studies indicate that incorporating a child’s native language in education not only enhances learning and behavioral outcomes but also boosts cognitive functions like problem-solving and planning. Taken as a whole, current research suggests that intentionally addressing linguistic diversity will allow educational and medical systems to better serve autistic children.
Autism, Ahead of Print.
Research has demonstrated that multilingual exposure does not inherently impede language development or academic achievement in autistic children. Nevertheless, autistic students who are multilingual learners may experience unique challenges in the United States, where systemic barriers constrain both the diagnosis and the delivery of education. This review synthesizes 46 US-based studies to assess how educational and, to a lesser extent, medical systems are (or are not) prepared to offer adequate support to autistic individuals from multilingual families. Results reveal varied patterns of systemic inequity faced by multilingual children on the autism spectrum, elucidating the issues of disproportionality as well as unequal access to educational and medical resources. While the majority of studies emphasize the benefits of multilingual environments for autistic students, a persistent trend in favor of monolingual instructional strategies remains. Despite this, emerging publications present experimental evidence that drawing on students’ first languages can bolster academic and behavioral performance and strengthen executive functioning.Lay AbstractResearch has found that autistic children can navigate multilingual schools and communities without harming their language skills or school success. However, they may encounter specific challenges within the United States, where educational and healthcare systems are insufficiently equipped to meet their needs. This review examined 46 US-based studies on the topic and findings reveal persistent deficit-based ideas about multilingualism and autism (e.g., professionals recommending that autistic students only speak and learn in English) accompanied by patterns of unequal identification of autism among multilingual children. These findings highlight issues of disproportionality and inadequate access to educational and healthcare resources. However, recent studies indicate that incorporating a child’s native language in education not only enhances learning and behavioral outcomes but also boosts cognitive functions like problem-solving and planning. Taken as a whole, current research suggests that intentionally addressing linguistic diversity will allow educational and medical systems to better serve autistic children.
Gender, assigned sex at birth, and gender diversity: Windows into diagnostic timing disparities in autism
- April 08, 2024
Autism, Ahead of Print.
Later autism diagnosis is associated with increased mental health risks. Understanding disparities in diagnostic timing is important to reduce psychiatric burden for autistic people. One characteristic associated with later autism diagnosis is female sex assigned at birth. However, literature to date does not characterize, differentiate, or account for gender identity beyond assigned sex at birth. Gender diversity may be more common in autistic relative to neurotypical people, and autism is proportionally overrepresented in gender-diverse populations. We examined age at autism diagnosis by assigned sex at birth, gender identity, and gender diversity (gender-diverse vs cisgender) status, separately. Three independent cohorts representing different ascertainments were examined: a research-recruited academic medical center sample (N = 193; 8.0–18.0 years); a clinic-based sample (N = 1550; 1.3–25.4 years); and a community-enriched sample (N = 244, 18.2–30.0 years). The clinic-based and community-enriched samples revealed disparities in diagnostic timing: people assigned female at birth, people of female gender, and gender-diverse people were diagnosed with autism significantly later than persons assigned male at birth, persons of male gender, and cisgender persons, respectively. Birth-sex, gender identity, and gender diversity may each uniquely relate to disparities in autism diagnostic timing. The influence of ascertainment strategies, particularly in studies examining assigned sex at birth or gender identity, should be considered.Lay AbstractLater autism diagnosis is associated with risk for mental health problems. Understanding factors related to later autism diagnosis may help reduce mental health risks for autistic people. One characteristic associated with later autism diagnosis is female sex. However, studies often do not distinguish sex assigned at birth and gender identity. Gender diversity may be more common in autistic relative to neurotypical people, and autism is more common in gender-diverse populations. We studied age at autism diagnosis by sex assigned at birth, gender identity, and gender diversity (gender-diverse vs cisgender) status, separately. We studied three separate autistic samples, each of which differed in how they were diagnosed and how they were recruited. The samples included 193 persons (8.0–18.0 years) from a research-recruited academic medical center sample; 1,550 people (1.3–25.4 years) from a clinic-based sample; and 244 people (18.2–30.0 years) from a community-enriched sample. We found significant differences in the clinic-based and community-enriched samples. People assigned female sex at birth were diagnosed with autism significantly later than people assigned male at birth. People of female gender were diagnosed significantly later than people of male gender. Gender-diverse people were diagnosed significantly later than cisgender people. Sex assigned at birth, gender identity, and gender diversity may each show unique relationships with age of autism diagnosis. Differences in how autistic people are diagnosed and recruited are important to consider in studies that examine sex assigned at birth or gender identity. More research into autism diagnosis in adulthood is needed.
Autism, Ahead of Print.
Later autism diagnosis is associated with increased mental health risks. Understanding disparities in diagnostic timing is important to reduce psychiatric burden for autistic people. One characteristic associated with later autism diagnosis is female sex assigned at birth. However, literature to date does not characterize, differentiate, or account for gender identity beyond assigned sex at birth. Gender diversity may be more common in autistic relative to neurotypical people, and autism is proportionally overrepresented in gender-diverse populations. We examined age at autism diagnosis by assigned sex at birth, gender identity, and gender diversity (gender-diverse vs cisgender) status, separately. Three independent cohorts representing different ascertainments were examined: a research-recruited academic medical center sample (N = 193; 8.0–18.0 years); a clinic-based sample (N = 1550; 1.3–25.4 years); and a community-enriched sample (N = 244, 18.2–30.0 years). The clinic-based and community-enriched samples revealed disparities in diagnostic timing: people assigned female at birth, people of female gender, and gender-diverse people were diagnosed with autism significantly later than persons assigned male at birth, persons of male gender, and cisgender persons, respectively. Birth-sex, gender identity, and gender diversity may each uniquely relate to disparities in autism diagnostic timing. The influence of ascertainment strategies, particularly in studies examining assigned sex at birth or gender identity, should be considered.Lay AbstractLater autism diagnosis is associated with risk for mental health problems. Understanding factors related to later autism diagnosis may help reduce mental health risks for autistic people. One characteristic associated with later autism diagnosis is female sex. However, studies often do not distinguish sex assigned at birth and gender identity. Gender diversity may be more common in autistic relative to neurotypical people, and autism is more common in gender-diverse populations. We studied age at autism diagnosis by sex assigned at birth, gender identity, and gender diversity (gender-diverse vs cisgender) status, separately. We studied three separate autistic samples, each of which differed in how they were diagnosed and how they were recruited. The samples included 193 persons (8.0–18.0 years) from a research-recruited academic medical center sample; 1,550 people (1.3–25.4 years) from a clinic-based sample; and 244 people (18.2–30.0 years) from a community-enriched sample. We found significant differences in the clinic-based and community-enriched samples. People assigned female sex at birth were diagnosed with autism significantly later than people assigned male at birth. People of female gender were diagnosed significantly later than people of male gender. Gender-diverse people were diagnosed significantly later than cisgender people. Sex assigned at birth, gender identity, and gender diversity may each show unique relationships with age of autism diagnosis. Differences in how autistic people are diagnosed and recruited are important to consider in studies that examine sex assigned at birth or gender identity. More research into autism diagnosis in adulthood is needed.
Self-compassion improves emotion regulation and mental health outcomes: A pilot study of an online self-compassion program for autistic adults
- April 08, 2024
Autism, Ahead of Print.
People thrive in compassionate environments. For autistic people, their environments are often non-conducive to care and support. We propose that cultivating autistic people’s self-compassion may be an antidote to the mental health difficulties arising from environmental causes. The current study aimed to pilot a self-guided online self-compassion program for autistic adults to assess its feasibility, acceptability, and outcomes related to completing this program. The program was co-produced with autistic individuals. Thirty-nine autistic adults aged 20–77 years (Mage = 45.28, SDage = 11.92) completed the online program. They also provided feedback about their self-compassion practices every week. They completed pre- and post-intervention online surveys measuring self-compassion, symptoms of anxiety and depression, positive and negative affect, emotion regulation difficulties, and psychological well-being. As hypothesized, there were significant group improvements in all outcome measures. Preliminary results suggest that the program is feasible and accepted by participants. Approximately half of the autistic participants reported experiences of backdraft, which are adverse reactions associated with self-compassion practices. Based on our findings, we provided clinical recommendations on how self-compassion can be taught to autistic adults.Lay abstractSelf-compassion is when we are aware of our feelings and thoughts, are friendly toward ourselves, and realize everyone feels pain and makes mistakes. Self-compassion is associated with having better mental health and well-being in autistic and non-autistic people. But we do not know if autistic people’s self-compassion can be improved through psychoeducation and self-compassion practices. We co-produced an online self-guided self-compassion program based on evidence-based self-compassion practices for autistic adults called the Self-compassion Program for Autistic Adults. This program included live-experiences videos of autistic adults reflecting on their self-compassion and self-critical experiences. This study piloted the program with 39 autistic adults. We wanted to see if these autistic adults’ self-compassion, emotion regulation, mental health, and psychological well-being improved after completing this program. We found that the autistic participants’ self-compassion, emotion regulation, mental health, and psychological well-being improved significantly after completing the program over 5 weeks. We also found that just over half of the participants reported experiencing negative reactions associated with self-compassion practices. We suggested some clinical implications, including a recommendation for emotion regulation interventions to incorporate self-compassion to help promote access to the affiliative system. In addition, autistic adults who are psychologically vulnerable may need to work with mental health professionals while developing self-compassion to help manage the possible negative reactions associated with some self-compassion practices.
Autism, Ahead of Print.
People thrive in compassionate environments. For autistic people, their environments are often non-conducive to care and support. We propose that cultivating autistic people’s self-compassion may be an antidote to the mental health difficulties arising from environmental causes. The current study aimed to pilot a self-guided online self-compassion program for autistic adults to assess its feasibility, acceptability, and outcomes related to completing this program. The program was co-produced with autistic individuals. Thirty-nine autistic adults aged 20–77 years (Mage = 45.28, SDage = 11.92) completed the online program. They also provided feedback about their self-compassion practices every week. They completed pre- and post-intervention online surveys measuring self-compassion, symptoms of anxiety and depression, positive and negative affect, emotion regulation difficulties, and psychological well-being. As hypothesized, there were significant group improvements in all outcome measures. Preliminary results suggest that the program is feasible and accepted by participants. Approximately half of the autistic participants reported experiences of backdraft, which are adverse reactions associated with self-compassion practices. Based on our findings, we provided clinical recommendations on how self-compassion can be taught to autistic adults.Lay abstractSelf-compassion is when we are aware of our feelings and thoughts, are friendly toward ourselves, and realize everyone feels pain and makes mistakes. Self-compassion is associated with having better mental health and well-being in autistic and non-autistic people. But we do not know if autistic people’s self-compassion can be improved through psychoeducation and self-compassion practices. We co-produced an online self-guided self-compassion program based on evidence-based self-compassion practices for autistic adults called the Self-compassion Program for Autistic Adults. This program included live-experiences videos of autistic adults reflecting on their self-compassion and self-critical experiences. This study piloted the program with 39 autistic adults. We wanted to see if these autistic adults’ self-compassion, emotion regulation, mental health, and psychological well-being improved after completing this program. We found that the autistic participants’ self-compassion, emotion regulation, mental health, and psychological well-being improved significantly after completing the program over 5 weeks. We also found that just over half of the participants reported experiencing negative reactions associated with self-compassion practices. We suggested some clinical implications, including a recommendation for emotion regulation interventions to incorporate self-compassion to help promote access to the affiliative system. In addition, autistic adults who are psychologically vulnerable may need to work with mental health professionals while developing self-compassion to help manage the possible negative reactions associated with some self-compassion practices.
Emerging adulthood in autism: Striving for independence or interdependence?
- April 06, 2024
Autism, Ahead of Print.
Autism, Ahead of Print.
Motivation to participate in structured physical activity for autistic youth: A systematic scoping review
- April 05, 2024
Autism, Ahead of Print.
Autistic youth participate in less mainstream physical activity than their neurotypical peers. A scoping review was conducted to explore motivational factors influencing participation in structured physical activity for autistic youth. Relevant databases were searched using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses with the inclusion of stakeholder consultation, to synthesise existing literature describing the participation and motivations of autistic youth in structured physical activities. Eighteen publications met the eligibility criteria. Qualitative data were extracted and analysed using directed content analysis and then mapped to the motivational constructs of the self-determination theory. Autism-specific themes falling outside of the self-determination theory were coded inductively. Competence was the most reported psychological need (k = 14), with intrinsic motivation being the most common motivational regulator (k = 12). Inductive analysis revealed one additional theme, which was the impact of the sensory environment on autistic youths’ motivation to participate. Findings indicate that meeting the psychological needs of autistic youth support self-determined motivation to participate in structured physical activities, although fulfilling these needs may differ from their neurotypical peers. Additional autism-specific factors may also influence motivation to participate in structured physical activities. Future research should examine motivational factors that support engagement in structured physical activities through the lens of autistic youth and their experiences.Lay abstractAutistic youth participate less in physical education classes and organised sport than their neurotypical peers. We conducted a review of existing studies to investigate what is known about what motivates (and does not motivate) autistic youth to take part in structured physical activities. We systematically searched electronic databases and found 18 publications that met the criteria to be included in this review. Data from these studies were extracted and mapped to the self-determination theory to identify factors that support (or undermine) motivation for autistic youth. We also discussed the findings with autistic individuals and other relevant stakeholders to discover how the review related to their experiences. Our results found competence (youth feeling competent in their athletic and social skills and abilities) to be the most reported psychological need impacting motivation for autistic youth. Intrinsic motivation (participating for enjoyment and satisfaction) was the most common facilitator of motivation. Autism-specific themes outside of the self-determination theory were mapped inductively, and we found that the sensory environment was a prominent theme reported to influence the motivation of autistic youth not covered by the self-determination theory. The findings of this review suggest that supporting the psychological needs of autistic youth can foster motivation to engage in physical activity, although how these needs are met can differ from their neurotypical peers. Future research should examine motivational factors that support engagement in structured physical activities through the lens of autistic youth and their experiences.
Autism, Ahead of Print.
Autistic youth participate in less mainstream physical activity than their neurotypical peers. A scoping review was conducted to explore motivational factors influencing participation in structured physical activity for autistic youth. Relevant databases were searched using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses with the inclusion of stakeholder consultation, to synthesise existing literature describing the participation and motivations of autistic youth in structured physical activities. Eighteen publications met the eligibility criteria. Qualitative data were extracted and analysed using directed content analysis and then mapped to the motivational constructs of the self-determination theory. Autism-specific themes falling outside of the self-determination theory were coded inductively. Competence was the most reported psychological need (k = 14), with intrinsic motivation being the most common motivational regulator (k = 12). Inductive analysis revealed one additional theme, which was the impact of the sensory environment on autistic youths’ motivation to participate. Findings indicate that meeting the psychological needs of autistic youth support self-determined motivation to participate in structured physical activities, although fulfilling these needs may differ from their neurotypical peers. Additional autism-specific factors may also influence motivation to participate in structured physical activities. Future research should examine motivational factors that support engagement in structured physical activities through the lens of autistic youth and their experiences.Lay abstractAutistic youth participate less in physical education classes and organised sport than their neurotypical peers. We conducted a review of existing studies to investigate what is known about what motivates (and does not motivate) autistic youth to take part in structured physical activities. We systematically searched electronic databases and found 18 publications that met the criteria to be included in this review. Data from these studies were extracted and mapped to the self-determination theory to identify factors that support (or undermine) motivation for autistic youth. We also discussed the findings with autistic individuals and other relevant stakeholders to discover how the review related to their experiences. Our results found competence (youth feeling competent in their athletic and social skills and abilities) to be the most reported psychological need impacting motivation for autistic youth. Intrinsic motivation (participating for enjoyment and satisfaction) was the most common facilitator of motivation. Autism-specific themes outside of the self-determination theory were mapped inductively, and we found that the sensory environment was a prominent theme reported to influence the motivation of autistic youth not covered by the self-determination theory. The findings of this review suggest that supporting the psychological needs of autistic youth can foster motivation to engage in physical activity, although how these needs are met can differ from their neurotypical peers. Future research should examine motivational factors that support engagement in structured physical activities through the lens of autistic youth and their experiences.
Person- and identity-first language in autism research: A systematic analysis of abstracts from 11 autism journals
- April 04, 2024
Autism, Ahead of Print.
We examined the use of person- and identity-first language (PFL, IFL) in scholarly writing about autism by reviewing 12,962 journal abstracts from 11 autism research journals (mostly covering the years 2001–2022). We found a preference for PFL (64.68%) over IFL (15.83%) when considering aggregated, within-journal breakdowns (with abstracts using both representing 19.50%). However, when examining language use longitudinally, we observed a general trend toward increasing use of IFL after years of stable trends showing predominant use of PFL. These trends were not consistent across all reviewed journals, as some journals demonstrated preference for either PFL or IFL across all observed years. Notably, we highlight the Journal of Autism and Developmental Disorders as a special case that offers a 51-year perspective (1971–2022); here, IFL was predominant until the 1990s, when PFL became a stable majority, and in the late 2010s, IFL started to increase. Journal differences in aggregate breakdowns and longitudinal trends are discussed in line with recent policy changes, journal submission guidelines, and shifting perspectives in autism research. Implications for writing about autistic individuals and the role that language plays within the broader autism research scholarly community are discussed.Lay AbstractThere are many ways to refer to an individual who is on the autism spectrum. A recommended approach has been to use person-first language (PFL), such as “person with autism.” A different approach is to use identity-first language (IFL), such as “autistic person.” Recent studies focused on different groups of people (e.g. autistic self-advocates, parents, and practitioners) show that some groups prefer PFL (practitioners) while others prefer IFL (autistic self-advocates). However, less is known about how researchers use PFL and IFL in academic writing (e.g. studies published in scientific journals) involving autistic research participants. Our study examined 12,962 journal abstracts (short summaries of scientific articles) from 11 academic journals that publish autism research findings. We wanted to know (a) about the use of PFL and IFL across abstracts, and (b) how PFL and IFL use has changed annually over time. We examined data for all journals individually and grouped together. Our findings showed that journal abstracts generally use PFL (65%) with some using either IFL (16%) or both PFL and IFL (20%). However, journals varied, with some showing a clear majority for PFL and a couple for IFL. Examining trends over time across journals showed that while PFL appeared to be the majority for most journals, IFL has steadily increased in the recent few years. Our study helps us understand how autism researchers write about autistic individuals and offers implications for helping researchers intentionally make choices about the language used in their autism research studies.
Autism, Ahead of Print.
We examined the use of person- and identity-first language (PFL, IFL) in scholarly writing about autism by reviewing 12,962 journal abstracts from 11 autism research journals (mostly covering the years 2001–2022). We found a preference for PFL (64.68%) over IFL (15.83%) when considering aggregated, within-journal breakdowns (with abstracts using both representing 19.50%). However, when examining language use longitudinally, we observed a general trend toward increasing use of IFL after years of stable trends showing predominant use of PFL. These trends were not consistent across all reviewed journals, as some journals demonstrated preference for either PFL or IFL across all observed years. Notably, we highlight the Journal of Autism and Developmental Disorders as a special case that offers a 51-year perspective (1971–2022); here, IFL was predominant until the 1990s, when PFL became a stable majority, and in the late 2010s, IFL started to increase. Journal differences in aggregate breakdowns and longitudinal trends are discussed in line with recent policy changes, journal submission guidelines, and shifting perspectives in autism research. Implications for writing about autistic individuals and the role that language plays within the broader autism research scholarly community are discussed.Lay AbstractThere are many ways to refer to an individual who is on the autism spectrum. A recommended approach has been to use person-first language (PFL), such as “person with autism.” A different approach is to use identity-first language (IFL), such as “autistic person.” Recent studies focused on different groups of people (e.g. autistic self-advocates, parents, and practitioners) show that some groups prefer PFL (practitioners) while others prefer IFL (autistic self-advocates). However, less is known about how researchers use PFL and IFL in academic writing (e.g. studies published in scientific journals) involving autistic research participants. Our study examined 12,962 journal abstracts (short summaries of scientific articles) from 11 academic journals that publish autism research findings. We wanted to know (a) about the use of PFL and IFL across abstracts, and (b) how PFL and IFL use has changed annually over time. We examined data for all journals individually and grouped together. Our findings showed that journal abstracts generally use PFL (65%) with some using either IFL (16%) or both PFL and IFL (20%). However, journals varied, with some showing a clear majority for PFL and a couple for IFL. Examining trends over time across journals showed that while PFL appeared to be the majority for most journals, IFL has steadily increased in the recent few years. Our study helps us understand how autism researchers write about autistic individuals and offers implications for helping researchers intentionally make choices about the language used in their autism research studies.
An ecological systems model of employee experience in industry-led autism employment programmes
- March 29, 2024
Autism, Ahead of Print.
Industry-led employment programmes have emerged to transition autistic people into employment and meet industry labour needs. However, theoretical research is limited in this area, often failing to appreciate the influence of the broader employment ecosystem. In this study, we interviewed 33 autistic employees (n = 29 males, Mage = 29.00 years) from two industry-led employment programmes regarding their experience of the programme’s supports, relationships and impact. We used qualitative content analysis to identify five themes: (1) working involves multiple job tasks that evolve as the employment context changes; (2) workplace relations are diverse and shaped by the type of work and the work environment; (3) workplace needs evolve as autistic individuals navigate the work environment; (4) developing a professional identity in the workplace through mastery and integration; and (5) recommendations for the development of supportive workplace environments for autistic individuals. We describe the way that factors within (e.g. training) and outside the two employment programmes changed and interacted over time to contribute to the participant’s work experience and professional identity. Building on ecological systems theory, our unique contribution to the literature is a new model capturing individual and workplace factors that contribute to the work experience of autistic people who participate in industry employment programmes.Lay AbstractWe asked 33 autistic adults from two industry-led employment programmes about their experiences in the programmes. These are programmes started by companies to recruit and support autistic people in work. We also asked about their workplace supports, relationships and how they thought the programme had impacted their life. Understanding the experiences of people in these industry-led employment programmes is important as the information can help to improve the programmes and participants’ experiences. After reviewing the interviews, we found five themes that best described the employee’s experience: (1) working involves multiple job tasks that evolve as the employment context changes; (2) relationships in the workplace are diverse and are influenced by the type of work participants do and the work environment; (3) workplace needs change as the autistic employees learn to navigate their work environment; (4) autistic employees develop a professional identity in the workplace as they master work and feel more integrated in the workplace; and (5) recommendations for the development of supportive workplace environments for autistic people. We explored the way that aspects of the two employment programmes (e.g. training) and factors outside the programme changed with time and contributed to the participant’s experience. We developed a new model to capture individual and workplace factors that contribute to the experience of autistic people who participate in industry employment programmes.
Autism, Ahead of Print.
Industry-led employment programmes have emerged to transition autistic people into employment and meet industry labour needs. However, theoretical research is limited in this area, often failing to appreciate the influence of the broader employment ecosystem. In this study, we interviewed 33 autistic employees (n = 29 males, Mage = 29.00 years) from two industry-led employment programmes regarding their experience of the programme’s supports, relationships and impact. We used qualitative content analysis to identify five themes: (1) working involves multiple job tasks that evolve as the employment context changes; (2) workplace relations are diverse and shaped by the type of work and the work environment; (3) workplace needs evolve as autistic individuals navigate the work environment; (4) developing a professional identity in the workplace through mastery and integration; and (5) recommendations for the development of supportive workplace environments for autistic individuals. We describe the way that factors within (e.g. training) and outside the two employment programmes changed and interacted over time to contribute to the participant’s work experience and professional identity. Building on ecological systems theory, our unique contribution to the literature is a new model capturing individual and workplace factors that contribute to the work experience of autistic people who participate in industry employment programmes.Lay AbstractWe asked 33 autistic adults from two industry-led employment programmes about their experiences in the programmes. These are programmes started by companies to recruit and support autistic people in work. We also asked about their workplace supports, relationships and how they thought the programme had impacted their life. Understanding the experiences of people in these industry-led employment programmes is important as the information can help to improve the programmes and participants’ experiences. After reviewing the interviews, we found five themes that best described the employee’s experience: (1) working involves multiple job tasks that evolve as the employment context changes; (2) relationships in the workplace are diverse and are influenced by the type of work participants do and the work environment; (3) workplace needs change as the autistic employees learn to navigate their work environment; (4) autistic employees develop a professional identity in the workplace as they master work and feel more integrated in the workplace; and (5) recommendations for the development of supportive workplace environments for autistic people. We explored the way that aspects of the two employment programmes (e.g. training) and factors outside the programme changed with time and contributed to the participant’s experience. We developed a new model to capture individual and workplace factors that contribute to the experience of autistic people who participate in industry employment programmes.
Autism and sexual and gender minority identity in college students: Examination of self-reported rates, functional outcomes, and treatment engagement
- March 29, 2024
Autism, Ahead of Print.
This study builds on existing literature on autism spectrum disorder (autism) and sexual and gender minority (SGM) identities and is the first to examine self-declared frequency rates, associated functional impairments, and treatment engagement levels for sexual minority (SM) and non-SM populations with and without autism cross-sectionally via a large nationwide college-student sample across 3 years. Using data from the American College Health Association-National College Health Assessment (ACHA-NCHA) III, we analyzed data from 81,286 college students (ages 18–25 years old) randomly selected from 75 U.S. colleges and universities. Included ACHA-NCHA-III measures consisted of self-reported demographics, SM and gender minority (GM) identities, autism diagnosis, stress, academic impairment, mental health symptoms, and treatment engagement. We found a 2.8% self-declared frequency of autism in the SM group, compared with 0.9% self-declared frequency among the non-SM sample. Autistic college students with both SM and GM identities had the greatest levels of reported adverse stress and the most negative academic and mental health outcomes (i.e., suicidality), followed by college students with two minority identities (i.e., Autism and SM, SM and GM), across all groups. These findings emphasize the need for mental healthcare providers to consider SM and GM identities in non-autistic and, especially, in autistic college students to assess suicide risk and inform treatment.Lay abstractAutistic individuals and those who identify with a sexual and/or gender minority are both at risk for various mental health concerns and related impairments. However, the connection between autism and sexual and/or gender minorities and mental health and functional outcomes is not clear. Here, we provide evidence of these connections by analyzing data from a large nationally representative dataset from the American College Health Association-National College Health Assessment III. We found that autistic college students who identify with both sexual and gender minorities reported the highest rates of stress, academic, and mental health concerns including suicidality when compared with autistic college students with or without a sexual and/or gender minority. In addition, college students with at least two identities, such as autism and a sexual minority identity or both a sexual and gender minority identity, reported the next highest rates of concern. These findings affirm the need for mental healthcare providers to consider the intersections of a sexual and gender minority identities in non-autistic and, especially, in autistic college students to develop and provide better support and resources.
Autism, Ahead of Print.
This study builds on existing literature on autism spectrum disorder (autism) and sexual and gender minority (SGM) identities and is the first to examine self-declared frequency rates, associated functional impairments, and treatment engagement levels for sexual minority (SM) and non-SM populations with and without autism cross-sectionally via a large nationwide college-student sample across 3 years. Using data from the American College Health Association-National College Health Assessment (ACHA-NCHA) III, we analyzed data from 81,286 college students (ages 18–25 years old) randomly selected from 75 U.S. colleges and universities. Included ACHA-NCHA-III measures consisted of self-reported demographics, SM and gender minority (GM) identities, autism diagnosis, stress, academic impairment, mental health symptoms, and treatment engagement. We found a 2.8% self-declared frequency of autism in the SM group, compared with 0.9% self-declared frequency among the non-SM sample. Autistic college students with both SM and GM identities had the greatest levels of reported adverse stress and the most negative academic and mental health outcomes (i.e., suicidality), followed by college students with two minority identities (i.e., Autism and SM, SM and GM), across all groups. These findings emphasize the need for mental healthcare providers to consider SM and GM identities in non-autistic and, especially, in autistic college students to assess suicide risk and inform treatment.Lay abstractAutistic individuals and those who identify with a sexual and/or gender minority are both at risk for various mental health concerns and related impairments. However, the connection between autism and sexual and/or gender minorities and mental health and functional outcomes is not clear. Here, we provide evidence of these connections by analyzing data from a large nationally representative dataset from the American College Health Association-National College Health Assessment III. We found that autistic college students who identify with both sexual and gender minorities reported the highest rates of stress, academic, and mental health concerns including suicidality when compared with autistic college students with or without a sexual and/or gender minority. In addition, college students with at least two identities, such as autism and a sexual minority identity or both a sexual and gender minority identity, reported the next highest rates of concern. These findings affirm the need for mental healthcare providers to consider the intersections of a sexual and gender minority identities in non-autistic and, especially, in autistic college students to develop and provide better support and resources.
“I do my best to do right by her”: Autistic motherhood and the experience of raising a non-autistic adolescent daughter
- March 26, 2024
Autism, Ahead of Print.
Little is known about the parenting experiences of autistic mothers, yet there is reason to believe that autistic mothers of non-autistic daughters have a unique set of experiences, especially during their daughters’ adolescence. Seven autistic mothers of adolescent (n = 5) and adult (n = 2) non-autistic daughters were interviewed about their experiences of raising their daughters during adolescence. Data were analyzed using an Interpretative Phenomenological Analysis (IPA) approach and four superordinate themes were identified: (1) Closeness in relationships (expressed affection, safety and support, understanding mothers’ autism), (2) Parenting strengths (problem-solving skills, positive strategies for managing conflict), (3) Identifying own social challenges (understanding social dynamics, friendships and social groups), and (4) Building daughters’ social skills (concern about daughters’ social development, creating opportunities for positive social interactions). This research highlights the strengths of autistic mothers and the loving relationships they have with their daughters. Mothers in this study also revealed specific challenges, such as interacting with other parents who often ignored or excluded them. This study, therefore, emphasizes the need for greater societal awareness, understanding, acceptance, and inclusion of the autistic community.Lay AbstractLittle is known about the parenting experiences of autistic mothers, especially those who have daughters who are not on the autism spectrum. In this study, we interviewed seven autistic mothers who have raised or are currently raising non-autistic teenage daughters. Mothers were asked to describe what parenting was/is like during their daughters’ teenage years. We analyzed the transcripts of the interviews and found several common themes. Mothers described their relationships with their daughters to be loving, safe, and empathetic. Mothers described several strengths when it came to parenting, such as helping their daughters solve problems and using positive strategies to handle conflict with their daughters. Mothers also described challenges they faced when interacting with other non-autistic people and when trying to form relationships with them. Mothers tried to build their daughters’ social skills so that they would not experience the same challenges. This study shows that autistic mothers have close, loving relationships with their non-autistic teenage daughters but have trouble forming relationships with other non-autistic people. It is, therefore, important that non-autistic parents are more understanding and welcoming of autistic mothers.
Autism, Ahead of Print.
Little is known about the parenting experiences of autistic mothers, yet there is reason to believe that autistic mothers of non-autistic daughters have a unique set of experiences, especially during their daughters’ adolescence. Seven autistic mothers of adolescent (n = 5) and adult (n = 2) non-autistic daughters were interviewed about their experiences of raising their daughters during adolescence. Data were analyzed using an Interpretative Phenomenological Analysis (IPA) approach and four superordinate themes were identified: (1) Closeness in relationships (expressed affection, safety and support, understanding mothers’ autism), (2) Parenting strengths (problem-solving skills, positive strategies for managing conflict), (3) Identifying own social challenges (understanding social dynamics, friendships and social groups), and (4) Building daughters’ social skills (concern about daughters’ social development, creating opportunities for positive social interactions). This research highlights the strengths of autistic mothers and the loving relationships they have with their daughters. Mothers in this study also revealed specific challenges, such as interacting with other parents who often ignored or excluded them. This study, therefore, emphasizes the need for greater societal awareness, understanding, acceptance, and inclusion of the autistic community.Lay AbstractLittle is known about the parenting experiences of autistic mothers, especially those who have daughters who are not on the autism spectrum. In this study, we interviewed seven autistic mothers who have raised or are currently raising non-autistic teenage daughters. Mothers were asked to describe what parenting was/is like during their daughters’ teenage years. We analyzed the transcripts of the interviews and found several common themes. Mothers described their relationships with their daughters to be loving, safe, and empathetic. Mothers described several strengths when it came to parenting, such as helping their daughters solve problems and using positive strategies to handle conflict with their daughters. Mothers also described challenges they faced when interacting with other non-autistic people and when trying to form relationships with them. Mothers tried to build their daughters’ social skills so that they would not experience the same challenges. This study shows that autistic mothers have close, loving relationships with their non-autistic teenage daughters but have trouble forming relationships with other non-autistic people. It is, therefore, important that non-autistic parents are more understanding and welcoming of autistic mothers.
Measuring depression and anxiety in autistic college students: A psychometric evaluation of the PHQ-9 and GAD-7
- March 22, 2024
Autism, Ahead of Print.
Anxiety, depression, and suicidality are major concerns among college students, though less is known about these constructs in autistic college students. Given the rising number of autistic individuals entering post-secondary education, adequate measurement and diagnosis of anxiety, depression, and suicidality is necessary to provide clinical care to this population. While the Generalized Anxiety Disorder-7 (GAD-7) and Patient Health Questionnaire-9 (PHQ-9) are commonly used in university settings, these instruments have not been psychometrically evaluated in autistic college students. The current study examines the differential psychometric properties of the GAD-7 and PHQ-9 utilizing invariance testing via structural equation modeling in a sample of self-identified autistic (n = 477) and non-autistic (n = 429) university students. Results showed that although the GAD-7 is invariant, the PHQ-9 was mostly invariant, with one item displaying non-invariance. Specifically, the PHQ-9 item assessing suicidality was found to be non-invariant at the metric level, indicating that autistic and non-autistic college students interpret this question differently. Future investigators should continue to assess the appropriateness of using common screening measures, originally created for non-autistic people, in autistic populations.Lay abstractAnxiety, depression, and suicidality are major concerns among college students, though less is known about these constructs in autistic college students. Given the rising number of autistic individuals entering college, adequate screening and diagnosis of mental health difficulties is necessary to provide care to this population. For example, despite widespread usage of the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7), it is unknown if the two instruments accurately measure depression and anxiety the same way between non-autistic and autistic individuals. Thus, the current study was the first to examine how these instruments measure depression and anxiety symptoms in autistic versus non-autistic college students. Utilizing tests of construct measurement in a sample of autistic (n = 477) and non-autistic (n = 429) university students aged 18–29, results showed that while the GAD-7 and PHQ-9 appear to be accurately capturing anxiety and depression in autistic college students, the PHQ-9 item assessing suicidality was found to be measuring different things. This indicates that autistic college students are not interpreting this question the way non-autistic students are, and thus, the measure is failing to capture suicidality in autistic people. Future investigators should continue to assess the appropriateness of using common screening measures, originally created by non-autistic people, in autistic populations.
Autism, Ahead of Print.
Anxiety, depression, and suicidality are major concerns among college students, though less is known about these constructs in autistic college students. Given the rising number of autistic individuals entering post-secondary education, adequate measurement and diagnosis of anxiety, depression, and suicidality is necessary to provide clinical care to this population. While the Generalized Anxiety Disorder-7 (GAD-7) and Patient Health Questionnaire-9 (PHQ-9) are commonly used in university settings, these instruments have not been psychometrically evaluated in autistic college students. The current study examines the differential psychometric properties of the GAD-7 and PHQ-9 utilizing invariance testing via structural equation modeling in a sample of self-identified autistic (n = 477) and non-autistic (n = 429) university students. Results showed that although the GAD-7 is invariant, the PHQ-9 was mostly invariant, with one item displaying non-invariance. Specifically, the PHQ-9 item assessing suicidality was found to be non-invariant at the metric level, indicating that autistic and non-autistic college students interpret this question differently. Future investigators should continue to assess the appropriateness of using common screening measures, originally created for non-autistic people, in autistic populations.Lay abstractAnxiety, depression, and suicidality are major concerns among college students, though less is known about these constructs in autistic college students. Given the rising number of autistic individuals entering college, adequate screening and diagnosis of mental health difficulties is necessary to provide care to this population. For example, despite widespread usage of the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7), it is unknown if the two instruments accurately measure depression and anxiety the same way between non-autistic and autistic individuals. Thus, the current study was the first to examine how these instruments measure depression and anxiety symptoms in autistic versus non-autistic college students. Utilizing tests of construct measurement in a sample of autistic (n = 477) and non-autistic (n = 429) university students aged 18–29, results showed that while the GAD-7 and PHQ-9 appear to be accurately capturing anxiety and depression in autistic college students, the PHQ-9 item assessing suicidality was found to be measuring different things. This indicates that autistic college students are not interpreting this question the way non-autistic students are, and thus, the measure is failing to capture suicidality in autistic people. Future investigators should continue to assess the appropriateness of using common screening measures, originally created by non-autistic people, in autistic populations.
Autistic preschoolers display reduced attention orientation for competition but intact facilitation from a parallel competitor: Eye-tracking and behavioral data
- March 22, 2024
Autism, Ahead of Print.
While overt social atypicalities remain a key component of the autistic phenotype, recent reframing of autistic social motivation suggests that these atypicalities do not overlap with their actual level of social engagement. Our study aimed to investigate autistic preschoolers’ visual attention toward social situations with unequal interactive load and determine the potential benefits of parallel competition, a form of lateral tutorship. The study observed 26 autistic preschoolers and 20 typically developing children. First, a gaze-contingent procedure measured visual attention toward videos of parallel competitive play, overtly cooperative play, and a non-social object. Then, a motor task and a cognitive task were conducted, both independently and with a parallel competitor to assess the effect of parallel engagement on children’s performance. Eye-tracking demonstrated autistic children displayed reduced attention toward competition than typically developing children. However, behavioral data revealed the presence of a parallel competitor significantly and similarly improved performance for autistics and typically developing children. These findings suggest a dissociation between social attention and social facilitation in young autistic children, indicating that atypical visual patterns toward social situations do not necessarily preclude them from benefiting from these situations. As such, activities parallel to the child activities, or lateral tutorship, may represent an addition to traditional joint-interactive activities in early education for autistic children.Lay AbstractRecent research suggests that we might have underestimated the social motivation of autistic individuals. Autistic children might be engaged in a social situation, even if they seem not to be attending to people in a typical way. Our study investigated how young autistic children behave in a “parallel” situation, which we call “parallel competition,” where people participate in friendly contests side-by-side but without direct interaction. First, we used eye-tracking technology to observe how much autistic children pay attention to two video scenarios: one depicting parallel competition, and the other where individuals play directly with each other. The results showed that autistic children looked less toward the parallel competition video than their typically developing peers. However, when autistic children took part in parallel competitions themselves, playing physical and cognitive games against a teacher, their performance improved relative to playing individually just as much as their typically developing peers. This suggests that even though autistic children pay attention to social events differently, they can still benefit from the presence of others. These findings suggest complementing traditional cooperative activities by incorporating parallel activities into educational programs for young autistic children. By doing so, we can create more inclusive learning environments for these children.
Autism, Ahead of Print.
While overt social atypicalities remain a key component of the autistic phenotype, recent reframing of autistic social motivation suggests that these atypicalities do not overlap with their actual level of social engagement. Our study aimed to investigate autistic preschoolers’ visual attention toward social situations with unequal interactive load and determine the potential benefits of parallel competition, a form of lateral tutorship. The study observed 26 autistic preschoolers and 20 typically developing children. First, a gaze-contingent procedure measured visual attention toward videos of parallel competitive play, overtly cooperative play, and a non-social object. Then, a motor task and a cognitive task were conducted, both independently and with a parallel competitor to assess the effect of parallel engagement on children’s performance. Eye-tracking demonstrated autistic children displayed reduced attention toward competition than typically developing children. However, behavioral data revealed the presence of a parallel competitor significantly and similarly improved performance for autistics and typically developing children. These findings suggest a dissociation between social attention and social facilitation in young autistic children, indicating that atypical visual patterns toward social situations do not necessarily preclude them from benefiting from these situations. As such, activities parallel to the child activities, or lateral tutorship, may represent an addition to traditional joint-interactive activities in early education for autistic children.Lay AbstractRecent research suggests that we might have underestimated the social motivation of autistic individuals. Autistic children might be engaged in a social situation, even if they seem not to be attending to people in a typical way. Our study investigated how young autistic children behave in a “parallel” situation, which we call “parallel competition,” where people participate in friendly contests side-by-side but without direct interaction. First, we used eye-tracking technology to observe how much autistic children pay attention to two video scenarios: one depicting parallel competition, and the other where individuals play directly with each other. The results showed that autistic children looked less toward the parallel competition video than their typically developing peers. However, when autistic children took part in parallel competitions themselves, playing physical and cognitive games against a teacher, their performance improved relative to playing individually just as much as their typically developing peers. This suggests that even though autistic children pay attention to social events differently, they can still benefit from the presence of others. These findings suggest complementing traditional cooperative activities by incorporating parallel activities into educational programs for young autistic children. By doing so, we can create more inclusive learning environments for these children.
Caregiver-centred empowerment for families raising autistic children: A qualitative case study from Argentina
- March 19, 2024
Autism, Ahead of Print.
Autistic children and their caregivers in Argentina often lack access to information, resources and evidence-based interventions. Caregiver empowerment may help support families to uphold their child’s rights and access suitable education and support. This study aimed to examine the perceptions on empowerment of caregivers of autistic children in Argentina. This was a phenomenological, qualitative study. We conducted 32 semi-structured individual interviews remotely. Participants included caregivers, health service providers, non-governmental organisation representatives, special education teachers and policy representatives. Data were analysed thematically. We developed three main themes: Caregiver agency: from intuitive coping strategies to entrepreneurship; ‘I had to cut down on therapy’: Economic instability and inequality affecting service access; and Equipping caregivers to be empowered. Both caregivers and professionals talked about the contribution of socio-economic inequalities to caregivers’ sense of disempowerment. Caregivers identified coping strategies and discussed their experiences with advocacy. They expressed that in-person and online support groups have an empowering effect. Based on participant views, strategies supporting caregiver empowerment may involve: interventions are co-designed by professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.Lay abstractCaregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations’ representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.
Autism, Ahead of Print.
Autistic children and their caregivers in Argentina often lack access to information, resources and evidence-based interventions. Caregiver empowerment may help support families to uphold their child’s rights and access suitable education and support. This study aimed to examine the perceptions on empowerment of caregivers of autistic children in Argentina. This was a phenomenological, qualitative study. We conducted 32 semi-structured individual interviews remotely. Participants included caregivers, health service providers, non-governmental organisation representatives, special education teachers and policy representatives. Data were analysed thematically. We developed three main themes: Caregiver agency: from intuitive coping strategies to entrepreneurship; ‘I had to cut down on therapy’: Economic instability and inequality affecting service access; and Equipping caregivers to be empowered. Both caregivers and professionals talked about the contribution of socio-economic inequalities to caregivers’ sense of disempowerment. Caregivers identified coping strategies and discussed their experiences with advocacy. They expressed that in-person and online support groups have an empowering effect. Based on participant views, strategies supporting caregiver empowerment may involve: interventions are co-designed by professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.Lay abstractCaregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations’ representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.
Smiling synchronization predicts interaction enjoyment in peer dyads of autistic and neurotypical youth
- March 18, 2024
Autism, Ahead of Print.
Autistic youth often experience challenges in interactions with neurotypical peers. One factor that may influence successful interactions with peers is interpersonal synchrony, or the degree to which interacting individuals align their behaviors (e.g. facial expressions) over time. Autistic and neurotypical youth were paired together into three dyad types: autistic participants paired with autistic participants (AUT-AUT), autistic participants paired with neurotypical participants (AUT-NT), and neurotypical participants with neurotypical participants (NT-NT). Dyads participated in a free conversation task and a video-watching task. We tested whether smiling synchronization differed between AUT-AUT, AUT-NT, and NT-NT dyads. We further tested if smiling synchronization predicted youth-reported interaction enjoyment. AUT-NT dyads had significantly reduced smiling synchronization compared with NT-NT dyads. Smiling synchronization also predicted multiple aspects of participant-rated interaction enjoyment, such as the desire to interact with the peer partner again, above and beyond the overall amount of smiling in the interaction. These findings indicate links between smiling synchronization and interaction enjoyment for autistic and neurotypical youth. Identifying opportunities to synchronize or share positive affect in interactions may promote more enjoyable interactions for both autistic and neurotypical youth.Lay abstractFor autistic and neurotypical youth, having positive social interactions with other youth is an important part of well-being. Other researchers have found that one factor that can make people feel like social interactions have gone well is synchronization. Synchronization happens when peoples’ body movements and facial expressions align while they’re interacting. We focus on smiling synchronization here because other studies have found that when neurotypical individuals synchronize their smiles more in a social interaction, they say they enjoy that social interaction more. However, no studies have directly tested whether smiling synchrony influences social interaction enjoyment in autistic and neurotypical youth. We measured smiling synchrony in pairs of interacting autistic and neurotypical youth who were meeting each other for the first time. Some pairs were autistic youth interacting with other autistic youth (autistic with autistic participant pairs), some pairs were autistic youth interacting with neurotypical youth (autistic with neurotypical participant pairs), and other pairs were neurotypical youth interacting with neurotypical youth (neurotypical with neurotypical participant pairs). We found that autistic with neurotypical participant pairs had lower smiling synchrony than neurotypical with neurotypical participant pairs. Youth who were in dyads that had more smiling synchrony said they enjoyed interacting with their partner more and that they wanted to interact with their partner again. Our research shows that smiling synchrony is one part of interactions between autistic and neurotypical youth that influences how well youth say the interaction went. Identifying natural opportunities for autistic and neurotypical youth to share positive feelings could be one way to promote positive social interactions between autistic and neurotypical youth.
Autism, Ahead of Print.
Autistic youth often experience challenges in interactions with neurotypical peers. One factor that may influence successful interactions with peers is interpersonal synchrony, or the degree to which interacting individuals align their behaviors (e.g. facial expressions) over time. Autistic and neurotypical youth were paired together into three dyad types: autistic participants paired with autistic participants (AUT-AUT), autistic participants paired with neurotypical participants (AUT-NT), and neurotypical participants with neurotypical participants (NT-NT). Dyads participated in a free conversation task and a video-watching task. We tested whether smiling synchronization differed between AUT-AUT, AUT-NT, and NT-NT dyads. We further tested if smiling synchronization predicted youth-reported interaction enjoyment. AUT-NT dyads had significantly reduced smiling synchronization compared with NT-NT dyads. Smiling synchronization also predicted multiple aspects of participant-rated interaction enjoyment, such as the desire to interact with the peer partner again, above and beyond the overall amount of smiling in the interaction. These findings indicate links between smiling synchronization and interaction enjoyment for autistic and neurotypical youth. Identifying opportunities to synchronize or share positive affect in interactions may promote more enjoyable interactions for both autistic and neurotypical youth.Lay abstractFor autistic and neurotypical youth, having positive social interactions with other youth is an important part of well-being. Other researchers have found that one factor that can make people feel like social interactions have gone well is synchronization. Synchronization happens when peoples’ body movements and facial expressions align while they’re interacting. We focus on smiling synchronization here because other studies have found that when neurotypical individuals synchronize their smiles more in a social interaction, they say they enjoy that social interaction more. However, no studies have directly tested whether smiling synchrony influences social interaction enjoyment in autistic and neurotypical youth. We measured smiling synchrony in pairs of interacting autistic and neurotypical youth who were meeting each other for the first time. Some pairs were autistic youth interacting with other autistic youth (autistic with autistic participant pairs), some pairs were autistic youth interacting with neurotypical youth (autistic with neurotypical participant pairs), and other pairs were neurotypical youth interacting with neurotypical youth (neurotypical with neurotypical participant pairs). We found that autistic with neurotypical participant pairs had lower smiling synchrony than neurotypical with neurotypical participant pairs. Youth who were in dyads that had more smiling synchrony said they enjoyed interacting with their partner more and that they wanted to interact with their partner again. Our research shows that smiling synchrony is one part of interactions between autistic and neurotypical youth that influences how well youth say the interaction went. Identifying natural opportunities for autistic and neurotypical youth to share positive feelings could be one way to promote positive social interactions between autistic and neurotypical youth.
Where do autistic people work? The distribution and predictors of occupational sectors of autistic and general population employees
- March 18, 2024
Autism, Ahead of Print.
Previous research on employment outcomes of autistic adults mainly assessed if they work and under what terms, with mostly anecdotal descriptions of where they work. This study aimed to identify the employment sector distribution of autistic employees compared to the general workforce in the Netherlands and to explore possible background predictors. Participants were 1115 employed autistic adults (476 male; 627 female; 12 other; mean age: 40.75) who completed a cross-sectional survey assessing employment sector, gender, age, age at diagnosis, educational level, degree of autistic traits, and presence of focused interests. Dutch workforce data were retrieved from the Central Bureau of Statistics. Results indicated significant differences in sector distribution across the two populations. Autistic adults were over-represented in the sectors healthcare & welfare, information technology, and public–army–charity, which were the three most-common sectors for this group. In economics & finances, and industry & construction, higher proportions were found in the general workforce. Most autistic employees in the healthcare & welfare sector were females while having a higher educational degree and being male predicted placement in information technology. The broad distribution of autistic employees beyond the information technology sector was notable, supporting the need for an individual approach to employment integration.Lay AbstractStudies on employment of autistic individuals mainly assessed if they work and what their working conditions are (e.g. weekly hours, salary) while less is known about where they work. We explore this issue in our study, by examining which employment sectors do autistic adults work in, and comparing them to the general workforce in the Netherlands. We also explored the possibility that gender, age, age at diagnosis, level of education, degree of autistic traits and presence of focused interests could lead to a higher likelihood of working in specific sectors. We assessed data from a survey filled in by 1115 employed autistic adults (476 male; 627 female; 12 other; mean age: 40.75). Dutch workforce information was based on data form the Central Bureau of Statistics. Results showed that a higher proportion of autistic employees worked in healthcare & welfare, information technology, and the public–army–charity sectors. These were the three most-common sectors for this group. A lower proportion of autistic employees worked in economics & finances, and industry & construction, compared to the general workforce. Most autistic employees in the healthcare & welfare sector were females while having a higher educational degree and being male increased the chance of working in information technology. In addition to the common impression that most autistic individuals have interests or abilities that align with employment in information technology and technology sectors, we found that autistic employees worked in various sectors. It is important to address individual characteristics and needs of autistic individuals, while encouraging diverse employment opportunities.
Autism, Ahead of Print.
Previous research on employment outcomes of autistic adults mainly assessed if they work and under what terms, with mostly anecdotal descriptions of where they work. This study aimed to identify the employment sector distribution of autistic employees compared to the general workforce in the Netherlands and to explore possible background predictors. Participants were 1115 employed autistic adults (476 male; 627 female; 12 other; mean age: 40.75) who completed a cross-sectional survey assessing employment sector, gender, age, age at diagnosis, educational level, degree of autistic traits, and presence of focused interests. Dutch workforce data were retrieved from the Central Bureau of Statistics. Results indicated significant differences in sector distribution across the two populations. Autistic adults were over-represented in the sectors healthcare & welfare, information technology, and public–army–charity, which were the three most-common sectors for this group. In economics & finances, and industry & construction, higher proportions were found in the general workforce. Most autistic employees in the healthcare & welfare sector were females while having a higher educational degree and being male predicted placement in information technology. The broad distribution of autistic employees beyond the information technology sector was notable, supporting the need for an individual approach to employment integration.Lay AbstractStudies on employment of autistic individuals mainly assessed if they work and what their working conditions are (e.g. weekly hours, salary) while less is known about where they work. We explore this issue in our study, by examining which employment sectors do autistic adults work in, and comparing them to the general workforce in the Netherlands. We also explored the possibility that gender, age, age at diagnosis, level of education, degree of autistic traits and presence of focused interests could lead to a higher likelihood of working in specific sectors. We assessed data from a survey filled in by 1115 employed autistic adults (476 male; 627 female; 12 other; mean age: 40.75). Dutch workforce information was based on data form the Central Bureau of Statistics. Results showed that a higher proportion of autistic employees worked in healthcare & welfare, information technology, and the public–army–charity sectors. These were the three most-common sectors for this group. A lower proportion of autistic employees worked in economics & finances, and industry & construction, compared to the general workforce. Most autistic employees in the healthcare & welfare sector were females while having a higher educational degree and being male increased the chance of working in information technology. In addition to the common impression that most autistic individuals have interests or abilities that align with employment in information technology and technology sectors, we found that autistic employees worked in various sectors. It is important to address individual characteristics and needs of autistic individuals, while encouraging diverse employment opportunities.
Exploring the association between social camouflaging and self- versus caregiver-report discrepancies in anxiety and depressive symptoms in autistic and non-autistic socially anxious adolescents
- March 15, 2024
Autism, Ahead of Print.
Social camouflaging in autism involves hiding social differences and autistic traits to fit in with neurotypical settings and is associated with poorer mental health in both autistic adolescents and adults. This study explored the association between self-reported social camouflaging behaviours and adolescents’ self-report of generalised anxiety disorder and depressive symptoms compared with caregiver reports. A clinical sample of 43 autistic and 39 non-autistic adolescents (14–19 years), without intellectual disability and matched on social anxiety, and their primary caregiver completed questionnaires reporting the young person’s autistic traits, generalised anxiety disorder and depression symptoms. Using response surface analysis, congruence between adolescent and caregiver rated autistic traits, generalised anxiety disorder and depression symptoms were not associated with greater camouflaging scores. Response surface analysis parameters showed that camouflaging was greater when both adolescent and caregivers rated high levels of autistic traits and generalised anxiety disorder symptoms, and when adolescents exceeded caregiver ratings on autistic traits, generalised anxiety disorder and depression symptoms. Adolescents who experience greater anxiety and autistic traits may engage in more (though less effective) social camouflaging behaviours, which in turn may contribute towards poorer mental health outcomes. Clinicians may benefit from collaboratively creating with adolescents a person-centred formulation that considers the associations between autistic traits and mental health outcomes.Lay abstractSocial camouflaging or masking refers to strategies autistic individuals adopt to hide their autism persona when trying to fit in. It is unclear whether camouflaging is only applicable to social differences unique to autism, or more generally to any types of social difference, such as experiences of mental health difficulties. We asked 43 autistic and 39 non-autistic adolescents (aged 14–19 years, all of whom showed similarly high levels of social anxiety) and their primary caregivers to complete questionnaires about their mental health (anxiety and depression) and autistic traits, and adolescents self-reported camouflaging behaviours. We wondered if camouflaging may be used to hide mental health difficulties reported by young people and affect caregiver report on symptom severity. We found that adolescents who self-reported greater levels of autistic traits, anxiety and depression symptoms compared with their caregivers reported greater camouflaging. Adolescents who agreed on having high levels of autistic traits and anxiety symptoms with their caregivers reported greater camouflaging behaviours. We discuss how having high levels of autistic traits and anxiety may increase adolescents’ camouflaging behaviours to hide social differences, which may contribute towards poor mental health outcomes. We think it is important to talk with adolescents about how camouflaging social and mental health difference can have negative impacts for mental health as well as possible positive social gains.
Autism, Ahead of Print.
Social camouflaging in autism involves hiding social differences and autistic traits to fit in with neurotypical settings and is associated with poorer mental health in both autistic adolescents and adults. This study explored the association between self-reported social camouflaging behaviours and adolescents’ self-report of generalised anxiety disorder and depressive symptoms compared with caregiver reports. A clinical sample of 43 autistic and 39 non-autistic adolescents (14–19 years), without intellectual disability and matched on social anxiety, and their primary caregiver completed questionnaires reporting the young person’s autistic traits, generalised anxiety disorder and depression symptoms. Using response surface analysis, congruence between adolescent and caregiver rated autistic traits, generalised anxiety disorder and depression symptoms were not associated with greater camouflaging scores. Response surface analysis parameters showed that camouflaging was greater when both adolescent and caregivers rated high levels of autistic traits and generalised anxiety disorder symptoms, and when adolescents exceeded caregiver ratings on autistic traits, generalised anxiety disorder and depression symptoms. Adolescents who experience greater anxiety and autistic traits may engage in more (though less effective) social camouflaging behaviours, which in turn may contribute towards poorer mental health outcomes. Clinicians may benefit from collaboratively creating with adolescents a person-centred formulation that considers the associations between autistic traits and mental health outcomes.Lay abstractSocial camouflaging or masking refers to strategies autistic individuals adopt to hide their autism persona when trying to fit in. It is unclear whether camouflaging is only applicable to social differences unique to autism, or more generally to any types of social difference, such as experiences of mental health difficulties. We asked 43 autistic and 39 non-autistic adolescents (aged 14–19 years, all of whom showed similarly high levels of social anxiety) and their primary caregivers to complete questionnaires about their mental health (anxiety and depression) and autistic traits, and adolescents self-reported camouflaging behaviours. We wondered if camouflaging may be used to hide mental health difficulties reported by young people and affect caregiver report on symptom severity. We found that adolescents who self-reported greater levels of autistic traits, anxiety and depression symptoms compared with their caregivers reported greater camouflaging. Adolescents who agreed on having high levels of autistic traits and anxiety symptoms with their caregivers reported greater camouflaging behaviours. We discuss how having high levels of autistic traits and anxiety may increase adolescents’ camouflaging behaviours to hide social differences, which may contribute towards poor mental health outcomes. We think it is important to talk with adolescents about how camouflaging social and mental health difference can have negative impacts for mental health as well as possible positive social gains.
Measurement invariance of the parent-reported Strengths and Difficulties Questionnaire in autistic adolescents
- March 14, 2024
Autism, Ahead of Print.
Mental health conditions are more prevalent in autistic people than non-autistic people. The Strengths and Difficulties Questionnaire is a commonly used screening tool for emotional and behavioural difficulties in autistic children and adolescents. However, few studies have assessed the psychometric properties of the Strengths and Difficulties Questionnaire in populations of autistic people, especially measurement invariance, to examine whether the underlying latent structure is consistent across time or groups. Measurement invariance of the parent-reported Strengths and Difficulties Questionnaire in a nationally representative cohort study was examined: longitudinal invariance (autistic 11-, 14- and 17-year-olds) and group invariance (autistic and non-autistic 17-year-olds). Differential item functioning was explored in the autistic/non-autistic group analysis. The five-factor structure showed inadequate fit, especially in the autistic group; by extension, measurement invariance could not be established. Differential item functioning was observed for several conduct problems, prosocial behaviour and peer problems subscale items, as well as reverse-coded items. Poor structural validity and item-level invariance may confound findings from research within and between populations of autistic and non-autistic adolescents, as well as screening of mental health conditions in autistic adolescents. This research calls for the development and improvement of screening tools for emotional and behavioural difficulties in populations of autistic people while accounting for their heterogeneity.Lay abstractAutistic people are more likely than non-autistic people to experience mental health difficulties. The Strengths and Difficulties Questionnaire is often used to screen for these difficulties and to otherwise make important decisions about mental health treatment and research in populations of autistic people. However, this study suggests that parent-reported Strengths and Difficulties Questionnaire scores may not be useful for comparing autistic and non-autistic adolescents at 11, 14 and 17 years old, as well as screening for mental health conditions in autistic adolescents. In addition, several items may be more likely to be endorsed by parents of autistic 17-year-olds than by parents of non-autistic 17-year-olds (and vice versa), which might suggest caution is needed when comparing groups on specific items.
Autism, Ahead of Print.
Mental health conditions are more prevalent in autistic people than non-autistic people. The Strengths and Difficulties Questionnaire is a commonly used screening tool for emotional and behavioural difficulties in autistic children and adolescents. However, few studies have assessed the psychometric properties of the Strengths and Difficulties Questionnaire in populations of autistic people, especially measurement invariance, to examine whether the underlying latent structure is consistent across time or groups. Measurement invariance of the parent-reported Strengths and Difficulties Questionnaire in a nationally representative cohort study was examined: longitudinal invariance (autistic 11-, 14- and 17-year-olds) and group invariance (autistic and non-autistic 17-year-olds). Differential item functioning was explored in the autistic/non-autistic group analysis. The five-factor structure showed inadequate fit, especially in the autistic group; by extension, measurement invariance could not be established. Differential item functioning was observed for several conduct problems, prosocial behaviour and peer problems subscale items, as well as reverse-coded items. Poor structural validity and item-level invariance may confound findings from research within and between populations of autistic and non-autistic adolescents, as well as screening of mental health conditions in autistic adolescents. This research calls for the development and improvement of screening tools for emotional and behavioural difficulties in populations of autistic people while accounting for their heterogeneity.Lay abstractAutistic people are more likely than non-autistic people to experience mental health difficulties. The Strengths and Difficulties Questionnaire is often used to screen for these difficulties and to otherwise make important decisions about mental health treatment and research in populations of autistic people. However, this study suggests that parent-reported Strengths and Difficulties Questionnaire scores may not be useful for comparing autistic and non-autistic adolescents at 11, 14 and 17 years old, as well as screening for mental health conditions in autistic adolescents. In addition, several items may be more likely to be endorsed by parents of autistic 17-year-olds than by parents of non-autistic 17-year-olds (and vice versa), which might suggest caution is needed when comparing groups on specific items.
Career progression for autistic people: A scoping review
- March 13, 2024
Autism, Ahead of Print.
Many autistic people are unemployed. Of those who are employed, many are in roles that do not reflect their skills, qualifications and/or capabilities, and little is known about how autistic people progress throughout their careers. This study aimed to review and synthesise the existing evidence about career progression for autistic people. In total, 33 studies met the criteria for inclusion, though no study directly aimed to explore the topic. Our findings suggest that underemployment is common within the autistic population. Indirectly, we identified several potential barriers and facilitators of career progression for autistic people. Possible barriers included personal (e.g. gaps in education and employment history), relational (e.g. disclosing an autism diagnosis) and organisational factors (e.g. inadequate employment support). Adequate employment support was the most frequently discussed facilitator. Future research should seek to identify the most successful employment supports for autistic people over the long term to ensure that all autistic people are able to live – and work – in ways that are meaningful to them.Lay abstractLots of autistic people are unemployed. Even when they are employed, autistic people might be given fewer opportunities than non-autistic people to progress in their careers. For example, assumptions about autistic people’s differences in social communication might mean they are not given as many promotions. Indeed, we know that many autistic people are in jobs lower than their abilities (known as ‘underemployment’). We reviewed 33 studies that tell us something about career progression for autistic people. Our review found that lots of autistic people want to progress in their careers, but there are many barriers in their way. For example, when they told their employer about being autistic, some people were given fewer opportunities. Research has also shown that autistic people do not get enough support to progress and that gaps in their employment history can make it difficult to progress. Our review suggested that good employment support (e.g. mentors) might help autistic people to progress in their careers. However, not much research has evaluated employment support for autistic people, which means we do not know how useful it is. Future research should find the best support that allows autistic people to live and work in ways that are meaningful to them.
Autism, Ahead of Print.
Many autistic people are unemployed. Of those who are employed, many are in roles that do not reflect their skills, qualifications and/or capabilities, and little is known about how autistic people progress throughout their careers. This study aimed to review and synthesise the existing evidence about career progression for autistic people. In total, 33 studies met the criteria for inclusion, though no study directly aimed to explore the topic. Our findings suggest that underemployment is common within the autistic population. Indirectly, we identified several potential barriers and facilitators of career progression for autistic people. Possible barriers included personal (e.g. gaps in education and employment history), relational (e.g. disclosing an autism diagnosis) and organisational factors (e.g. inadequate employment support). Adequate employment support was the most frequently discussed facilitator. Future research should seek to identify the most successful employment supports for autistic people over the long term to ensure that all autistic people are able to live – and work – in ways that are meaningful to them.Lay abstractLots of autistic people are unemployed. Even when they are employed, autistic people might be given fewer opportunities than non-autistic people to progress in their careers. For example, assumptions about autistic people’s differences in social communication might mean they are not given as many promotions. Indeed, we know that many autistic people are in jobs lower than their abilities (known as ‘underemployment’). We reviewed 33 studies that tell us something about career progression for autistic people. Our review found that lots of autistic people want to progress in their careers, but there are many barriers in their way. For example, when they told their employer about being autistic, some people were given fewer opportunities. Research has also shown that autistic people do not get enough support to progress and that gaps in their employment history can make it difficult to progress. Our review suggested that good employment support (e.g. mentors) might help autistic people to progress in their careers. However, not much research has evaluated employment support for autistic people, which means we do not know how useful it is. Future research should find the best support that allows autistic people to live and work in ways that are meaningful to them.
Workforce perspective on racial and ethnic equity in early childhood autism evaluation and treatment: “The cornerstone of everything we do”
- March 13, 2024
Autism, Ahead of Print.
Black and non-White Latinx children have historically been diagnosed with autism at a later age and with more significant impairments than White peers. This study aimed to gather insights from members of the autism service provider workforce on current barriers and facilitators to achieving equity in early childhood autism evaluation, referrals, and treatment. We employed a qualitative descriptive design using semi-structured virtual focus groups with autism experts in North Carolina (N = 26). Our final sample included pediatric clinicians across disciplines, researchers, family/caregiver advocates, and policymakers/government representatives. We identified four overarching themes representing challenges to equitable autism service provision: (1) workforce composition and recruitment concerns, (2) workforce capacity and accessibility concerns, (3) workforce compensation obstacles, and (4) COVID-19 pandemic adaptations’ impact. Our findings demonstrate the need for improved workforce diversity, autism-specific education, adequate compensation, and interventions to address burnout. To remediate existing barriers to equity, diversity in recruitment across training levels, cultural awareness, autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow its interdisciplinary professionals to better meet the needs of children and families from historically marginalized communities and achieve equitable early childhood service provision.Lay abstractBlack and non-White Latinx children tend to receive autism diagnoses later in life and with a higher degree of impairment than White children. The purpose of this study was to learn what is currently helping as well as preventing Black and non-White Latinx children from getting access to autism evaluation and services. We held virtual interviews with 26 experts who work with autistic children and their families, including clinical providers, researchers, advocates, and policymakers/government representatives. From these interviews, we identified four themes that have an impact on equity in autism services: (1) who makes up the workforce, (2) workforce capacity and accessibility, (3) workforce payment structure, and (4) changes due to the COVID-19 pandemic. These findings show the need for improved workforce diversity, autism-specific education, payment structures, and additional support for workforce members to avoid burnout. To make childhood autism services more equitable, diversity in recruitment across training levels, cultural awareness, increased autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow professionals in the field to better meet the needs of children and families from Black and non-White Latinx communities and achieve equity in early childhood autism services.
Autism, Ahead of Print.
Black and non-White Latinx children have historically been diagnosed with autism at a later age and with more significant impairments than White peers. This study aimed to gather insights from members of the autism service provider workforce on current barriers and facilitators to achieving equity in early childhood autism evaluation, referrals, and treatment. We employed a qualitative descriptive design using semi-structured virtual focus groups with autism experts in North Carolina (N = 26). Our final sample included pediatric clinicians across disciplines, researchers, family/caregiver advocates, and policymakers/government representatives. We identified four overarching themes representing challenges to equitable autism service provision: (1) workforce composition and recruitment concerns, (2) workforce capacity and accessibility concerns, (3) workforce compensation obstacles, and (4) COVID-19 pandemic adaptations’ impact. Our findings demonstrate the need for improved workforce diversity, autism-specific education, adequate compensation, and interventions to address burnout. To remediate existing barriers to equity, diversity in recruitment across training levels, cultural awareness, autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow its interdisciplinary professionals to better meet the needs of children and families from historically marginalized communities and achieve equitable early childhood service provision.Lay abstractBlack and non-White Latinx children tend to receive autism diagnoses later in life and with a higher degree of impairment than White children. The purpose of this study was to learn what is currently helping as well as preventing Black and non-White Latinx children from getting access to autism evaluation and services. We held virtual interviews with 26 experts who work with autistic children and their families, including clinical providers, researchers, advocates, and policymakers/government representatives. From these interviews, we identified four themes that have an impact on equity in autism services: (1) who makes up the workforce, (2) workforce capacity and accessibility, (3) workforce payment structure, and (4) changes due to the COVID-19 pandemic. These findings show the need for improved workforce diversity, autism-specific education, payment structures, and additional support for workforce members to avoid burnout. To make childhood autism services more equitable, diversity in recruitment across training levels, cultural awareness, increased autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow professionals in the field to better meet the needs of children and families from Black and non-White Latinx communities and achieve equity in early childhood autism services.
The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory
- March 12, 2024
Autism, Ahead of Print.
We, an international group of autistic scholars of autism and neurodiversity, discuss recent findings on the origins of the concept and theorising of neurodiversity. For some time, the coinage and theorising of the concept of ‘neurodiversity’ has been attributed to Judy Singer. Singer wrote an Honours thesis on the subject in 1998, focused on autistic activists and allies in the autistic community email list Independent Living (InLv). This was revised into a briefer book chapter, published in 1999. Despite the widespread attribution to Singer, the terms ‘neurological diversity’ and ‘neurodiversity’ were first printed in 1997 and 1998, respectively, in the work of the journalist Harvey Blume, who himself attributed them not to Singer but rather to the online community of autistic people, such as the ‘Institute for the Study of the Neurologically Typical’. Recently, Martijn Dekker reported a 1996 discussion in which one InLv poster, Tony Langdon, writes of the ‘neurological diversity of people. i.e. the atypical among a society provide the different perspectives needed to generate new ideas and advances, whether they be technological, cultural, artistic or otherwise’. Going forward, we should recognise the multiple, collective origins of the neurodiversity concept rather than attributing it to any single author.Lay abstractThis letter discusses the origins of the concept and theory of neurodiversity. It is important to correctly attribute concept and theories to the people who developed them. For some time, the concept of neurodiversity has primarily been attributed to one person, Judy Singer. We consider the available evidence and show that the concept and theory in fact has multiple origins. We draw particular attention to recent archival findings that show the concept of ‘neurological diversity’ was being used years earlier than previously thought. ‘Neurodiversity’ means the same thing as ‘neurological diversity’ and does not change the theory in any way. We conclude that both the concept of neurological diversity or neurodiversity, and the body of theory surrounding it, should be understood as having been collectively developed by neurodivergent people.
Autism, Ahead of Print.
We, an international group of autistic scholars of autism and neurodiversity, discuss recent findings on the origins of the concept and theorising of neurodiversity. For some time, the coinage and theorising of the concept of ‘neurodiversity’ has been attributed to Judy Singer. Singer wrote an Honours thesis on the subject in 1998, focused on autistic activists and allies in the autistic community email list Independent Living (InLv). This was revised into a briefer book chapter, published in 1999. Despite the widespread attribution to Singer, the terms ‘neurological diversity’ and ‘neurodiversity’ were first printed in 1997 and 1998, respectively, in the work of the journalist Harvey Blume, who himself attributed them not to Singer but rather to the online community of autistic people, such as the ‘Institute for the Study of the Neurologically Typical’. Recently, Martijn Dekker reported a 1996 discussion in which one InLv poster, Tony Langdon, writes of the ‘neurological diversity of people. i.e. the atypical among a society provide the different perspectives needed to generate new ideas and advances, whether they be technological, cultural, artistic or otherwise’. Going forward, we should recognise the multiple, collective origins of the neurodiversity concept rather than attributing it to any single author.Lay abstractThis letter discusses the origins of the concept and theory of neurodiversity. It is important to correctly attribute concept and theories to the people who developed them. For some time, the concept of neurodiversity has primarily been attributed to one person, Judy Singer. We consider the available evidence and show that the concept and theory in fact has multiple origins. We draw particular attention to recent archival findings that show the concept of ‘neurological diversity’ was being used years earlier than previously thought. ‘Neurodiversity’ means the same thing as ‘neurological diversity’ and does not change the theory in any way. We conclude that both the concept of neurological diversity or neurodiversity, and the body of theory surrounding it, should be understood as having been collectively developed by neurodivergent people.
Demographic and autism characteristics as predictors of age of autism diagnosis of individuals with autism in Paraguay
- March 12, 2024
Autism, Ahead of Print.
Autism is a lifelong condition characterized by repetitive and restrictive behaviors and differences in social communication. The reported prevalence of autism has risen exponentially in the past years. Early identification and subsequent early intervention are key to promoting better outcomes for autistic individuals. However, there is a dearth of research focusing on understanding variables that impact the age of diagnosis of autistic children in Paraguay. We collected data from 176 caregivers of autistic individuals aged 18 years or younger who lived in Paraguay and conducted a hierarchical regression analysis to understand whether demographic and clinical variables predicted the age of autism diagnosis in Paraguayan autistic children. Our results indicated that child’s age, child’s age at caregivers’ first concerns for their development, and child’s verbal skills were significant predictors of the age of autism diagnosis in Paraguay. Educating caregivers and professionals to increase awareness of autism characteristics and atypical behaviors in social communication beyond verbal skills may support the early identification of autism and subsequent access to early intervention.Lay abstractAutism is a lifelong condition characterized by repetitive behaviors and social communication differences. The reported cases of autism increased globally in the past years. Detecting autism early and providing appropriate supports promptly are crucial for better outcomes. Yet, little research focuses on what factors interplay in the diagnostic process of autistic children in Paraguay. We gathered data from 176 caregivers of autistic children under 18 years in Paraguay. Through a detailed analysis, we found that child’s age, child’s age at the caregiver’s first concerns about their development, and the child’s verbal skills are key in predicting the age of autism diagnosis in Paraguay. Educating caregivers and professionals about autism and social communication development can help identify autism early and provide timely support.
Autism, Ahead of Print.
Autism is a lifelong condition characterized by repetitive and restrictive behaviors and differences in social communication. The reported prevalence of autism has risen exponentially in the past years. Early identification and subsequent early intervention are key to promoting better outcomes for autistic individuals. However, there is a dearth of research focusing on understanding variables that impact the age of diagnosis of autistic children in Paraguay. We collected data from 176 caregivers of autistic individuals aged 18 years or younger who lived in Paraguay and conducted a hierarchical regression analysis to understand whether demographic and clinical variables predicted the age of autism diagnosis in Paraguayan autistic children. Our results indicated that child’s age, child’s age at caregivers’ first concerns for their development, and child’s verbal skills were significant predictors of the age of autism diagnosis in Paraguay. Educating caregivers and professionals to increase awareness of autism characteristics and atypical behaviors in social communication beyond verbal skills may support the early identification of autism and subsequent access to early intervention.Lay abstractAutism is a lifelong condition characterized by repetitive behaviors and social communication differences. The reported cases of autism increased globally in the past years. Detecting autism early and providing appropriate supports promptly are crucial for better outcomes. Yet, little research focuses on what factors interplay in the diagnostic process of autistic children in Paraguay. We gathered data from 176 caregivers of autistic children under 18 years in Paraguay. Through a detailed analysis, we found that child’s age, child’s age at the caregiver’s first concerns about their development, and the child’s verbal skills are key in predicting the age of autism diagnosis in Paraguay. Educating caregivers and professionals about autism and social communication development can help identify autism early and provide timely support.
“I’m dealing with a health care system that doesn’t get it”: Barriers and facilitators to inclusive healthcare for autistic adults
- March 12, 2024
Autism, Ahead of Print.
Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56 years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults.Lay abstractResearch has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.
Autism, Ahead of Print.
Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56 years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults.Lay abstractResearch has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.
Revisiting the Link: A qualitative analysis of the diverse experiences of gender dysphoria as a subset of pervasive social dysphoria co-occurring with autism in Japan
- March 11, 2024
Autism, Ahead of Print.
While the link between autism and gender dysphoria has received increasing attention, the phenomenon of gender dysphoria co-occurring with autism remains unclear owing to the lack of autistic transgender perspectives. Therefore, we explored the gender dysphoria experiences of 15 Japanese autistic transgender adults, obtaining two key findings. First, their gender dysphoria experiences were diverse; some were related to gender incongruence, whereas others were not. The latter were characterized by resistance to the societal gender norms themselves, sensory disgust related to autistic sensory sensitivities, uncertainty regarding the gender norms of the social majority, and the autistic burden of living in a gendered society. Second, by examining the participants’ life stories of being autistic in society, we found that most of them not only accumulate distress over gender norms (i.e. gender dysphoria) but pervasive social norms as well, which we termed pervasive social dysphoria. In other words, most participants experienced gender dysphoria as a subset of pervasive social dysphoria. These findings indicate that future research and practice need to further affirm the internal perspectives, such as by investigating which among the diverse gender dysphoria experiences co-occur with autism or a link between autism and pervasive social dysphoria, and by providing support for both gender dysphoria and pervasive social dysphoria in practice.Lay abstractStudies have suggested that autistic people are more likely to experience gender dysphoria, which refers to the gender-related distress emerging from personal factors and gender norms that some transgender people experience. Transgender people are diverse; some experience gender incongruence (i.e. an incompatibility between a person’s gender identity and that expected of them based on their birth-assigned gender), whereas others do not. Therefore, the association of autistic transgender people’s gender dysphoria with gender incongruence varies, and the literature has overlooked such diversity. Interviews with 15 Japanese autistic transgender adults revealed diverse gender dysphoria experiences independent of gender incongruence, such as resistance to the societal gender norms themselves, physical dysphoria caused by the imposition of gender, sensory disgust related to autistic sensory sensitivities, uncertainty about the gender norms of the social majority, and the autistic burden of living in a gendered society. Moreover, we found that most participants had not only accumulated distress over gender norms (i.e. gender dysphoria) but also over pervasive social norms, termed Pervasive Social Dysphoria. Our findings suggests that future co-occurrence research and practice must affirm these internal perspectives more, such as by providing support for both gender dysphoria and Pervasive Social Dysphoria, as autistic transgender people may experience gender dysphoria as a subset of Pervasive Social Dysphoria.
Autism, Ahead of Print.
While the link between autism and gender dysphoria has received increasing attention, the phenomenon of gender dysphoria co-occurring with autism remains unclear owing to the lack of autistic transgender perspectives. Therefore, we explored the gender dysphoria experiences of 15 Japanese autistic transgender adults, obtaining two key findings. First, their gender dysphoria experiences were diverse; some were related to gender incongruence, whereas others were not. The latter were characterized by resistance to the societal gender norms themselves, sensory disgust related to autistic sensory sensitivities, uncertainty regarding the gender norms of the social majority, and the autistic burden of living in a gendered society. Second, by examining the participants’ life stories of being autistic in society, we found that most of them not only accumulate distress over gender norms (i.e. gender dysphoria) but pervasive social norms as well, which we termed pervasive social dysphoria. In other words, most participants experienced gender dysphoria as a subset of pervasive social dysphoria. These findings indicate that future research and practice need to further affirm the internal perspectives, such as by investigating which among the diverse gender dysphoria experiences co-occur with autism or a link between autism and pervasive social dysphoria, and by providing support for both gender dysphoria and pervasive social dysphoria in practice.Lay abstractStudies have suggested that autistic people are more likely to experience gender dysphoria, which refers to the gender-related distress emerging from personal factors and gender norms that some transgender people experience. Transgender people are diverse; some experience gender incongruence (i.e. an incompatibility between a person’s gender identity and that expected of them based on their birth-assigned gender), whereas others do not. Therefore, the association of autistic transgender people’s gender dysphoria with gender incongruence varies, and the literature has overlooked such diversity. Interviews with 15 Japanese autistic transgender adults revealed diverse gender dysphoria experiences independent of gender incongruence, such as resistance to the societal gender norms themselves, physical dysphoria caused by the imposition of gender, sensory disgust related to autistic sensory sensitivities, uncertainty about the gender norms of the social majority, and the autistic burden of living in a gendered society. Moreover, we found that most participants had not only accumulated distress over gender norms (i.e. gender dysphoria) but also over pervasive social norms, termed Pervasive Social Dysphoria. Our findings suggests that future co-occurrence research and practice must affirm these internal perspectives more, such as by providing support for both gender dysphoria and Pervasive Social Dysphoria, as autistic transgender people may experience gender dysphoria as a subset of Pervasive Social Dysphoria.
How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography
- March 11, 2024
Autism, Ahead of Print.
Autistic adults are at increased risk of both mental and physical health difficulties, and yet can face barriers to accessing healthcare. A meta-ethnographic approach was used to conduct a review of the existing literature regarding autistic adults’ experiences of accessing healthcare. Four databases were systematically searched for qualitative and mixed-method studies reporting on the experiences of autistic adults without a co-occurring learning disability accessing adult healthcare services within the United Kingdom. Fifteen studies met the inclusion criteria, and seven steps were used to systematically extract the data and then generate novel themes. Three superordinate themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights the wide-reaching damaging impact misdiagnosis, inadequate or inappropriate treatment, overwhelming environments and inaccessible systems can have on the well-being and ability of autistic adults to engage with treatment. The lack of autism knowledge and understanding experienced in interactions with healthcare professionals, along with autistic adult’s own communication and sensory processing differences, demonstrates the need for widely delivered training co-produced with autistic adults alongside bespoke and person-centred adaptations.Lay abstractAutistic adults are more likely to experience mental and physical health difficulties, and yet can find it difficult to get the support that they need. A meta-ethnographic approach was used to review the existing research on autistic adults’ experiences of accessing healthcare. Four databases were searched for qualitative and mixed-method studies which looked at the experiences of autistic adults who did not also have a learning disability when using healthcare services in the United Kingdom. Fifteen papers met the criteria to be included, and seven steps were used to analyse the information and develop new themes. Three main themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights how damaging misdiagnosis, inappropriate treatment, overwhelming environments and systems that are difficult to access can have on the well-being of autistic adults. Limited knowledge and understanding about autism knowledge among healthcare professionals along with autistic adult’s own communication and sensory differences indicate that there is a need for improved training developed with autistic adults and adaptations.
Autism, Ahead of Print.
Autistic adults are at increased risk of both mental and physical health difficulties, and yet can face barriers to accessing healthcare. A meta-ethnographic approach was used to conduct a review of the existing literature regarding autistic adults’ experiences of accessing healthcare. Four databases were systematically searched for qualitative and mixed-method studies reporting on the experiences of autistic adults without a co-occurring learning disability accessing adult healthcare services within the United Kingdom. Fifteen studies met the inclusion criteria, and seven steps were used to systematically extract the data and then generate novel themes. Three superordinate themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights the wide-reaching damaging impact misdiagnosis, inadequate or inappropriate treatment, overwhelming environments and inaccessible systems can have on the well-being and ability of autistic adults to engage with treatment. The lack of autism knowledge and understanding experienced in interactions with healthcare professionals, along with autistic adult’s own communication and sensory processing differences, demonstrates the need for widely delivered training co-produced with autistic adults alongside bespoke and person-centred adaptations.Lay abstractAutistic adults are more likely to experience mental and physical health difficulties, and yet can find it difficult to get the support that they need. A meta-ethnographic approach was used to review the existing research on autistic adults’ experiences of accessing healthcare. Four databases were searched for qualitative and mixed-method studies which looked at the experiences of autistic adults who did not also have a learning disability when using healthcare services in the United Kingdom. Fifteen papers met the criteria to be included, and seven steps were used to analyse the information and develop new themes. Three main themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights how damaging misdiagnosis, inappropriate treatment, overwhelming environments and systems that are difficult to access can have on the well-being of autistic adults. Limited knowledge and understanding about autism knowledge among healthcare professionals along with autistic adult’s own communication and sensory differences indicate that there is a need for improved training developed with autistic adults and adaptations.
Sex differences in autism screening: An examination of the Childhood Autism Spectrum Test–Hebrew version
- March 11, 2024
Autism, Ahead of Print.
Autism is a neurodevelopmental condition, characterized by altered social communication and repetitive behavior. Typically diagnosed in early childhood, screening and diagnosis at a later age can be challenging, particularly in girls who exhibit a wider range of behaviors and characteristics. This study aimed to examine the Childhood Autism Spectrum Test–Hebrew version in a clinically referred Israeli sample, and to identify items that best discriminate between autistic and non-autistic boys and girls. Parents of 211 autistic (retrospectively reviewed) and 192 non-autistic children, aged 4–12 years, completed the Childhood Autism Spectrum Test–Hebrew version. Results indicated good discriminatory power, with an area under the curve of 0.93. A cutoff of 9 offered optimal sensitivity of 0.93 and specificity of 0.82. The addition of a more focused sex-specific analysis using items that best discriminated autistic from non-autistic boys and girls significantly improved the overall identification rate of autism, particularly in girls. The Childhood Autism Spectrum Test–Hebrew version was positively correlated with the Autism Diagnostic Interview–Revised but not with Autism Diagnostic Observation Schedule-2. Findings underscore the importance of considering sex differences in autism screening and the potential value of sex-specific screening. Future research should focus on replicating these findings in a larger, diverse, prospective study.Lay abstractAutism is a neurodevelopmental condition, characterized by social communication alterations and restricted, repetitive behaviors. Typically diagnosed in early childhood, screening and diagnosis at a later age can be challenging, particularly in girls who exhibit a wider range of behaviors and characteristics. Our study set out to examine the effectiveness of the Hebrew translation of the Childhood Autism Spectrum Test, a parent report questionnaire, in identifying these diverse characteristics of autism within an Israeli sample of boys and girls. We examined parent reports on 403 (211 autistic, 192 non-autistic) children, aged 4–12 years. Results revealed the Childhood Autism Spectrum Test–Hebrew version was a valuable tool in differentiating between autistic and typically developing children, correctly identifying 93% of children with autism and 82% of typically developing children. In addition, specific items of the Childhood Autism Spectrum Test–Hebrew version were particularly useful in differentiating between autistic and non-autistic boys and autistic and non-autistic girls. Using these items, in addition to the overall score of the questionnaire, increased the correct identification of children as autistic or typically developing, especially in girls. The Childhood Autism Spectrum Test–Hebrew version test results corresponded well with the Autism Diagnostic Interview–Revised, which relies on parental input, but not with the clinician-administered Autism Diagnostic Observation Schedule-2. Our findings highlight the potential benefits of gender-specific tools to better support correct identification of autism in boys and in girls. More research is recommended to further explore these gender differences and to validate our findings with a larger, diverse group.
Autism, Ahead of Print.
Autism is a neurodevelopmental condition, characterized by altered social communication and repetitive behavior. Typically diagnosed in early childhood, screening and diagnosis at a later age can be challenging, particularly in girls who exhibit a wider range of behaviors and characteristics. This study aimed to examine the Childhood Autism Spectrum Test–Hebrew version in a clinically referred Israeli sample, and to identify items that best discriminate between autistic and non-autistic boys and girls. Parents of 211 autistic (retrospectively reviewed) and 192 non-autistic children, aged 4–12 years, completed the Childhood Autism Spectrum Test–Hebrew version. Results indicated good discriminatory power, with an area under the curve of 0.93. A cutoff of 9 offered optimal sensitivity of 0.93 and specificity of 0.82. The addition of a more focused sex-specific analysis using items that best discriminated autistic from non-autistic boys and girls significantly improved the overall identification rate of autism, particularly in girls. The Childhood Autism Spectrum Test–Hebrew version was positively correlated with the Autism Diagnostic Interview–Revised but not with Autism Diagnostic Observation Schedule-2. Findings underscore the importance of considering sex differences in autism screening and the potential value of sex-specific screening. Future research should focus on replicating these findings in a larger, diverse, prospective study.Lay abstractAutism is a neurodevelopmental condition, characterized by social communication alterations and restricted, repetitive behaviors. Typically diagnosed in early childhood, screening and diagnosis at a later age can be challenging, particularly in girls who exhibit a wider range of behaviors and characteristics. Our study set out to examine the effectiveness of the Hebrew translation of the Childhood Autism Spectrum Test, a parent report questionnaire, in identifying these diverse characteristics of autism within an Israeli sample of boys and girls. We examined parent reports on 403 (211 autistic, 192 non-autistic) children, aged 4–12 years. Results revealed the Childhood Autism Spectrum Test–Hebrew version was a valuable tool in differentiating between autistic and typically developing children, correctly identifying 93% of children with autism and 82% of typically developing children. In addition, specific items of the Childhood Autism Spectrum Test–Hebrew version were particularly useful in differentiating between autistic and non-autistic boys and autistic and non-autistic girls. Using these items, in addition to the overall score of the questionnaire, increased the correct identification of children as autistic or typically developing, especially in girls. The Childhood Autism Spectrum Test–Hebrew version test results corresponded well with the Autism Diagnostic Interview–Revised, which relies on parental input, but not with the clinician-administered Autism Diagnostic Observation Schedule-2. Our findings highlight the potential benefits of gender-specific tools to better support correct identification of autism in boys and in girls. More research is recommended to further explore these gender differences and to validate our findings with a larger, diverse group.
What do parents of nonverbal and minimally verbal autistic children think about genomic autism research?
- March 09, 2024
Autism, Ahead of Print.
Concerns have been raised about genomic studies of autism. Most recently, the Spectrum 10 K study was paused due to criticism from the autistic community. This situation raised important questions about how the autistic and autism communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based-research study was established to address this issue. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, if it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt that they and their children were often excluded from, and unrepresented by, the autistic and autism communities. We conclude that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard.Lay abstractIn Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard.
Autism, Ahead of Print.
Concerns have been raised about genomic studies of autism. Most recently, the Spectrum 10 K study was paused due to criticism from the autistic community. This situation raised important questions about how the autistic and autism communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based-research study was established to address this issue. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, if it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt that they and their children were often excluded from, and unrepresented by, the autistic and autism communities. We conclude that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard.Lay abstractIn Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard.
Understanding autism diagnosis in primary care: Rates of diagnosis from 2004 to 2019 and child age at diagnosis
- March 08, 2024
Autism, Ahead of Print.
The capacity of the workforce lags behind the current demand for timely autism diagnostic assessment. Primary care providers (PCPs) are well-positioned to diagnose autism at earlier ages than providers from other disciplines. Thus, bolstering PCPs’ diagnostic capabilities has been the focus of many recent capacity-building initiatives. Using data from the National Survey of Children’s Health, this study aimed to evaluate whether diagnosis of autism in primary care has changed over time and whether diagnosis in primary care relates to age at autism diagnosis. Results indicated that the likelihood of being diagnosed with autism by a PCP decreased by about 2% with every passing year from 2004 to 2019 when controlling for demographic characteristics. PCPs diagnosed children approximately 1 year earlier than non-PCPs (e.g., psychiatrists and psychologists), which supports the critical role PCPs can play in timely diagnosis. Further research is needed to understand why the proportion of children diagnosed by PCPs has decreased over time; however, these findings suggest that capacity-building initiatives have not yet reached community practice. Future research should focus on the dissemination and implementation of training initiatives in community-based primary care practices.Lay abstractThe current demand for autism diagnostic services exceeds the ability of the workforce to assess and diagnose children in a timely manner. One solution may be to equip primary care providers (PCPs) with the tools and expertise needed to diagnose autism within their practice. PCPs are often trusted professionals who have many touchpoints with children during early development, in which they can identify early signs of autism. Recent initiatives have focused on bolstering PCPs’ diagnostic capabilities; however, no studies have examined how the rates of autism diagnosis in primary care have changed over time. We aimed to evaluate whether autism diagnosis in primary care has changed over time and how diagnosis in primary care relates to a child’s age at the time of diagnosis. We found that the likelihood of a child being diagnosed by a PCP decreased by about 2% with every passing year from 2004 to 2019 when accounting for demographic characteristics. In our sample, PCPs diagnosed children approximately 1 year earlier than non-PCPs (e.g., psychologists and psychiatrists). Further research is needed to understand why the proportion of children diagnosed by PCPs decreases over time. However, this decrease suggests more work is needed to get capacity-building initiatives into community primary care practice. Though we must continue to find effective ways to build community PCPs’ ability to diagnose autism, the present findings support the crucial role PCPs can play in early autism diagnosis.
Autism, Ahead of Print.
The capacity of the workforce lags behind the current demand for timely autism diagnostic assessment. Primary care providers (PCPs) are well-positioned to diagnose autism at earlier ages than providers from other disciplines. Thus, bolstering PCPs’ diagnostic capabilities has been the focus of many recent capacity-building initiatives. Using data from the National Survey of Children’s Health, this study aimed to evaluate whether diagnosis of autism in primary care has changed over time and whether diagnosis in primary care relates to age at autism diagnosis. Results indicated that the likelihood of being diagnosed with autism by a PCP decreased by about 2% with every passing year from 2004 to 2019 when controlling for demographic characteristics. PCPs diagnosed children approximately 1 year earlier than non-PCPs (e.g., psychiatrists and psychologists), which supports the critical role PCPs can play in timely diagnosis. Further research is needed to understand why the proportion of children diagnosed by PCPs has decreased over time; however, these findings suggest that capacity-building initiatives have not yet reached community practice. Future research should focus on the dissemination and implementation of training initiatives in community-based primary care practices.Lay abstractThe current demand for autism diagnostic services exceeds the ability of the workforce to assess and diagnose children in a timely manner. One solution may be to equip primary care providers (PCPs) with the tools and expertise needed to diagnose autism within their practice. PCPs are often trusted professionals who have many touchpoints with children during early development, in which they can identify early signs of autism. Recent initiatives have focused on bolstering PCPs’ diagnostic capabilities; however, no studies have examined how the rates of autism diagnosis in primary care have changed over time. We aimed to evaluate whether autism diagnosis in primary care has changed over time and how diagnosis in primary care relates to a child’s age at the time of diagnosis. We found that the likelihood of a child being diagnosed by a PCP decreased by about 2% with every passing year from 2004 to 2019 when accounting for demographic characteristics. In our sample, PCPs diagnosed children approximately 1 year earlier than non-PCPs (e.g., psychologists and psychiatrists). Further research is needed to understand why the proportion of children diagnosed by PCPs decreases over time. However, this decrease suggests more work is needed to get capacity-building initiatives into community primary care practice. Though we must continue to find effective ways to build community PCPs’ ability to diagnose autism, the present findings support the crucial role PCPs can play in early autism diagnosis.
Developmental associations between motor and communication outcomes in Fragile X syndrome: Variation in the context of co-occurring autism
- March 08, 2024
Autism, Ahead of Print.
Fragile X syndrome (FXS), the leading heritable cause of intellectual disability, has a co-occurrence rate of autism spectrum disorder (ASD) estimated at ~60%. The onset and rates of motor development in FXS are slower relative to neurotypical development, and even more so in the context of co-occurring FXS + ASD. Extant evidence suggests these differences are likely to affect communication, yet this developmental process or how it varies in the context of co-occurring ASD remains unknown in FXS. We aimed to delineate developmental associations between early motor abilities and their rate of development from 9 to 60 months of age on communication outcomes in 51 children with FXS, 28 of whom had co-occurring ASD. We also aimed to identify variation in these developmental associations in the context of co-occurring ASD. Results captured within-syndrome variability in these developmental associations as a function of co-occurring ASD. Fine motor proved to be a robust predictor of receptive communication regardless of co-occurring ASD, but we identified differences between FXS with and without ASD in the association between aspects of motor development and expressive outcomes. Findings provide evidence for differential developmental processes in the context of co-occurring ASD with implications for timely developmental intervention.Lay abstractFragile X syndrome (FXS), the leading heritable cause of intellectual disability, has a co-occurrence rate of autism spectrum disorder (ASD) estimated at ~60%. Children with FXS experience delayed achievement and slower development of key motor abilities, which happens to an even greater extent for children with both FXS and ASD. A multitude of studies have demonstrated that motor abilities are foundational skills related to later communication outcomes in neurotypical development, as well as in the context of ASD. However, these associations remain unexamined in FXS, or FXS + ASD. In this study, we aimed to determine the associations between early motor skills and their rate of development on communication outcomes in FXS. Furthermore, we investigated whether these associations varied in the context of co-occurring FXS + ASD. Results revealed within-FXS variation in the context of co-occurring ASD between some aspects of motor development and communication outcomes, yet within-FXS consistency between others. Findings provide evidence for variability in developmental processes and outcomes in FXS in the context of co-occurring ASD and offer implications for intervention.
Autism, Ahead of Print.
Fragile X syndrome (FXS), the leading heritable cause of intellectual disability, has a co-occurrence rate of autism spectrum disorder (ASD) estimated at ~60%. The onset and rates of motor development in FXS are slower relative to neurotypical development, and even more so in the context of co-occurring FXS + ASD. Extant evidence suggests these differences are likely to affect communication, yet this developmental process or how it varies in the context of co-occurring ASD remains unknown in FXS. We aimed to delineate developmental associations between early motor abilities and their rate of development from 9 to 60 months of age on communication outcomes in 51 children with FXS, 28 of whom had co-occurring ASD. We also aimed to identify variation in these developmental associations in the context of co-occurring ASD. Results captured within-syndrome variability in these developmental associations as a function of co-occurring ASD. Fine motor proved to be a robust predictor of receptive communication regardless of co-occurring ASD, but we identified differences between FXS with and without ASD in the association between aspects of motor development and expressive outcomes. Findings provide evidence for differential developmental processes in the context of co-occurring ASD with implications for timely developmental intervention.Lay abstractFragile X syndrome (FXS), the leading heritable cause of intellectual disability, has a co-occurrence rate of autism spectrum disorder (ASD) estimated at ~60%. Children with FXS experience delayed achievement and slower development of key motor abilities, which happens to an even greater extent for children with both FXS and ASD. A multitude of studies have demonstrated that motor abilities are foundational skills related to later communication outcomes in neurotypical development, as well as in the context of ASD. However, these associations remain unexamined in FXS, or FXS + ASD. In this study, we aimed to determine the associations between early motor skills and their rate of development on communication outcomes in FXS. Furthermore, we investigated whether these associations varied in the context of co-occurring FXS + ASD. Results revealed within-FXS variation in the context of co-occurring ASD between some aspects of motor development and communication outcomes, yet within-FXS consistency between others. Findings provide evidence for variability in developmental processes and outcomes in FXS in the context of co-occurring ASD and offer implications for intervention.
Using music to assist language learning in autistic children with minimal verbal language: The MAP feasibility RCT
- March 04, 2024
Autism, Ahead of Print.
Music has been shown to improve social interaction and attention to verbal stimuli in autism. We report a feasibility randomised controlled trial of an online intervention using music-assisted programmes, compared with best-practice treatment (Social Communication Intervention for Pre-schoolers–Intensive) for language learning in preschool autistic children with minimal verbal language. Minimisation randomisation ensured comparability of groups before intervention. Ninety-one people expressed interest in taking part; 27 met eligibility criteria and were randomised to receive either music-assisted programmes or Social Communication Intervention for Pre-schoolers–Intensive. Children and their parent received two 45-min sessions weekly, over 18 weeks, coached online by a speech and language therapist. A smartphone app was developed to support home-based practice between sessions. Over the study period, 20% of participants completed the intervention and assessments of outcome measures. At 3 months post-intervention follow-up, social responsiveness, understanding of words and phrases and number of words spoken and parent–child interaction improved more in the music-assisted programmes than the Social Communication Intervention for Pre-schoolers–Intensive group. The results demonstrate the feasibility of recruiting this population into a randomised controlled trial and the music-assisted programmes had high perceived acceptability highlighted by parent interviews. A full clinical trial to establish music-assisted programmes’ effectiveness in improving early vocabulary learning in autistic children is warranted.Lay abstractResearch has shown that autistic individuals often have unusually good musical skills and that combining words and music helps autistic individuals to focus on spoken words. This study tests the idea that music will help with early language learning of preschool autistic children. The results show that when caregivers sing words to autistic children, the children pay more attention to the caregiver than when the words are spoken and that they learn word combinations more easily.
Autism, Ahead of Print.
Music has been shown to improve social interaction and attention to verbal stimuli in autism. We report a feasibility randomised controlled trial of an online intervention using music-assisted programmes, compared with best-practice treatment (Social Communication Intervention for Pre-schoolers–Intensive) for language learning in preschool autistic children with minimal verbal language. Minimisation randomisation ensured comparability of groups before intervention. Ninety-one people expressed interest in taking part; 27 met eligibility criteria and were randomised to receive either music-assisted programmes or Social Communication Intervention for Pre-schoolers–Intensive. Children and their parent received two 45-min sessions weekly, over 18 weeks, coached online by a speech and language therapist. A smartphone app was developed to support home-based practice between sessions. Over the study period, 20% of participants completed the intervention and assessments of outcome measures. At 3 months post-intervention follow-up, social responsiveness, understanding of words and phrases and number of words spoken and parent–child interaction improved more in the music-assisted programmes than the Social Communication Intervention for Pre-schoolers–Intensive group. The results demonstrate the feasibility of recruiting this population into a randomised controlled trial and the music-assisted programmes had high perceived acceptability highlighted by parent interviews. A full clinical trial to establish music-assisted programmes’ effectiveness in improving early vocabulary learning in autistic children is warranted.Lay abstractResearch has shown that autistic individuals often have unusually good musical skills and that combining words and music helps autistic individuals to focus on spoken words. This study tests the idea that music will help with early language learning of preschool autistic children. The results show that when caregivers sing words to autistic children, the children pay more attention to the caregiver than when the words are spoken and that they learn word combinations more easily.
Short report: Do parents use asynchronous materials in a hybrid coaching via telehealth intervention?
- March 04, 2024
Autism, Ahead of Print.
Telehealth is rapidly expanding; however, few studies have investigated hybrid models that include synchronous and asynchronous components. While research recognizes the importance of tailoring interventions to meet individual child needs, we have yet to understand how to tailor interventions to parent characteristics. This study examined how baseline parent characteristics (n = 25) were related to asynchronous material usage in a hybrid coaching via telehealth intervention for potty training in children with autism. Results suggested that parents with lower baseline competence used the asynchronous materials more frequently than parents with higher baseline competence and were more likely to make greater gains in parent competence between pre- and post-intervention. There were no differences between groups on the acceptability of the intervention. Future research should examine multiple baseline parent characteristics in a larger sample to better understand how to tailor interventions to meet both parent and child needs.Lay abstractUsing telehealth to provide services to families and children with autism has grown since the start of the COVID-19 pandemic. Yet, we still know less about telehealth models that use both virtual sessions and online materials to support families. Research suggests it is important to make sure an intervention matches the characteristics of a child with autism, but fewer studies have examined the importance of matching an intervention to parent characteristics. In this study, we looked at parent characteristics (25 parents included in the study) before a parent coaching telehealth intervention for potty training in autism. We specifically looked at how parent competence (i.e. how confident and effective one feels with parenting) levels before the intervention influenced the usage of online education materials (i.e. podcasts/tip sheets). Results suggested that parents with lower competence used the online materials more often than parents with higher competence, and often made greater gains in parent competence during the intervention. Both parents with lower and higher competence found the intervention acceptable. Future research should study additional parent characteristics in a larger sample to better understand how to tailor interventions to meet both parent and child needs.
Autism, Ahead of Print.
Telehealth is rapidly expanding; however, few studies have investigated hybrid models that include synchronous and asynchronous components. While research recognizes the importance of tailoring interventions to meet individual child needs, we have yet to understand how to tailor interventions to parent characteristics. This study examined how baseline parent characteristics (n = 25) were related to asynchronous material usage in a hybrid coaching via telehealth intervention for potty training in children with autism. Results suggested that parents with lower baseline competence used the asynchronous materials more frequently than parents with higher baseline competence and were more likely to make greater gains in parent competence between pre- and post-intervention. There were no differences between groups on the acceptability of the intervention. Future research should examine multiple baseline parent characteristics in a larger sample to better understand how to tailor interventions to meet both parent and child needs.Lay abstractUsing telehealth to provide services to families and children with autism has grown since the start of the COVID-19 pandemic. Yet, we still know less about telehealth models that use both virtual sessions and online materials to support families. Research suggests it is important to make sure an intervention matches the characteristics of a child with autism, but fewer studies have examined the importance of matching an intervention to parent characteristics. In this study, we looked at parent characteristics (25 parents included in the study) before a parent coaching telehealth intervention for potty training in autism. We specifically looked at how parent competence (i.e. how confident and effective one feels with parenting) levels before the intervention influenced the usage of online education materials (i.e. podcasts/tip sheets). Results suggested that parents with lower competence used the online materials more often than parents with higher competence, and often made greater gains in parent competence during the intervention. Both parents with lower and higher competence found the intervention acceptable. Future research should study additional parent characteristics in a larger sample to better understand how to tailor interventions to meet both parent and child needs.
It’s our job to bridge the gap: Perspectives of bilingual autism providers on heritage language care
- February 28, 2024
Autism, Ahead of Print.
Autistic children from heritage-language-speaking homes in the United States are a growing group that would benefit from tailored support that honors their linguistic heritage. Bilingual autistic adults share benefits of their bilingualism abilities and report childhood learning environments as necessary for facilitating language learning or maintenance. Caregivers of young autistic children also report the desire to maintain their heritage languages but sometimes struggle to do so due to misconceptions and a lack of resources such as bilingual personnel. This study was the first to explore U.S.-based bilingual providers’ (N = 16) experiences and perceptions of providing bilingual care for autistic children. Data analysis was conducted using reflexive thematic analysis, and resulted in five themes, including (a) You Don’t Have to Change Who You Are: Experiences and Beliefs About Bilingualism, (b) Having the “Other” Perspective: Empathy and Intersectionality, (c) Services as a Gateway: Beliefs Rooted in Social Justice, (d) He Was Like a Different Child: Impacts of Receiving Heritage-Language Support, and (e) It Was Just Business: Impacts of Not Receiving Same Language Support. Findings from this study suggest that autistic children and their families benefit from heritage language care, and the recruitment and retention of a linguistically diverse workforce is recommended. Additional implications for research and practice are discussed.Lay abstractIn the United States, many people have heritage languages they speak in their homes other than English, such as Chinese or Spanish. Autistic children whose families speak different languages could benefit from support and teaching in their heritage languages. Still, caregivers have reported that it is challenging to do so. Many autism professionals make suggestions that are not based on research. To date, researchers have not examined the perspectives of the small group of bilingual professionals in the United States who provide bilingual support for autistic children. Therefore, this study explored how bilingual autism providers in the United States talked about their work, bilingualism, and the impacts their bilingual work has on autistic children and families. The bilingual providers in this study reported many positive outcomes for autistic children when they can learn and use their heritage languages and some negative outcomes when providers cannot communicate in the same language. Recommendations from this study highlight the need to recruit more bilingual providers in the field of autism.
Autism, Ahead of Print.
Autistic children from heritage-language-speaking homes in the United States are a growing group that would benefit from tailored support that honors their linguistic heritage. Bilingual autistic adults share benefits of their bilingualism abilities and report childhood learning environments as necessary for facilitating language learning or maintenance. Caregivers of young autistic children also report the desire to maintain their heritage languages but sometimes struggle to do so due to misconceptions and a lack of resources such as bilingual personnel. This study was the first to explore U.S.-based bilingual providers’ (N = 16) experiences and perceptions of providing bilingual care for autistic children. Data analysis was conducted using reflexive thematic analysis, and resulted in five themes, including (a) You Don’t Have to Change Who You Are: Experiences and Beliefs About Bilingualism, (b) Having the “Other” Perspective: Empathy and Intersectionality, (c) Services as a Gateway: Beliefs Rooted in Social Justice, (d) He Was Like a Different Child: Impacts of Receiving Heritage-Language Support, and (e) It Was Just Business: Impacts of Not Receiving Same Language Support. Findings from this study suggest that autistic children and their families benefit from heritage language care, and the recruitment and retention of a linguistically diverse workforce is recommended. Additional implications for research and practice are discussed.Lay abstractIn the United States, many people have heritage languages they speak in their homes other than English, such as Chinese or Spanish. Autistic children whose families speak different languages could benefit from support and teaching in their heritage languages. Still, caregivers have reported that it is challenging to do so. Many autism professionals make suggestions that are not based on research. To date, researchers have not examined the perspectives of the small group of bilingual professionals in the United States who provide bilingual support for autistic children. Therefore, this study explored how bilingual autism providers in the United States talked about their work, bilingualism, and the impacts their bilingual work has on autistic children and families. The bilingual providers in this study reported many positive outcomes for autistic children when they can learn and use their heritage languages and some negative outcomes when providers cannot communicate in the same language. Recommendations from this study highlight the need to recruit more bilingual providers in the field of autism.
The role of autism and alexithymia traits in behavioral and neural indicators of self-concept and self-esteem in adolescence
- February 27, 2024
Autism, Ahead of Print.
Self-concept develops during adolescence, but little is known about self-concept in adolescents with autism. This behavioral neuroimaging study investigated (1) self-concept positivity across three domains (academic, physical appearance, and prosocial) and (2) from the perspective of self (direct self-concept) and the perceived perspective of peers (reflected self-concept) in 12- to 16-year-old adolescent males with (n = 35) and without autism (n = 34). These behavioral and neural measures of self-concept were additionally related to autism traits and alexithymia traits across groups. Results showed no general group differences, but more autism traits were related to less positive self-concept ratings in the physical appearance and prosocial domains. More autism traits were also associated with less similarity between direct and reflected prosocial self-concept ratings. Lower self-esteem was additionally explained by alexithymia, specifically the difficulty to identify ones feelings. Participants showed medial prefrontal cortex activation in response to evaluating self-traits in both groups. Region-of-interest analyses revealed that medial prefrontal cortex and right temporal–parietal junction activation were differentially related to alexithymia traits. Together, this study provides a comprehensive understanding of self-concept and self-esteem in adolescents with varying levels autism and alexithymia traits.Lay abstractDeveloping a positive view of the self is important for maintaining a good mental health, as feeling negative about the self increases the risk of developing internalizing symptoms such as feelings of depression and anxiety. Even though autistic individuals regularly struggle with these internalizing feelings, and both self-concept and internalizing feelings are known to develop during adolescence, there is a lack of studies investigating the development of positive self-concept and self-esteem in autistic adolescents. Here, we studied academic, physical, and prosocial self-concept as well as self-esteem in adolescent males with and without autism on both the behavioral and neural level. We additionally focused on similarities in one’s own and peers’ perspectives on the self, and we assessed a potential role of alexithymia (i.e. having trouble identifying and describing one’s feelings) in developing a more negative view of the self. Results showed that there were no group differences in self-esteem, self-concept, or underlying neural activation. This shows that autistic adolescent males use the same neural processes when they evaluate their traits. However, regardless of clinical diagnosis, a higher number of autism traits was related to a less positive physical and prosocial self-concept, whereas more difficulty identifying one’s feelings was related to lowered self-esteem and less activation in medial prefrontal cortex during self-evaluations. Therefore, in treatment of autistic adolescents with low self-esteem, it is important to take into account and possibly aim to improve alexithymic traits as well.
Autism, Ahead of Print.
Self-concept develops during adolescence, but little is known about self-concept in adolescents with autism. This behavioral neuroimaging study investigated (1) self-concept positivity across three domains (academic, physical appearance, and prosocial) and (2) from the perspective of self (direct self-concept) and the perceived perspective of peers (reflected self-concept) in 12- to 16-year-old adolescent males with (n = 35) and without autism (n = 34). These behavioral and neural measures of self-concept were additionally related to autism traits and alexithymia traits across groups. Results showed no general group differences, but more autism traits were related to less positive self-concept ratings in the physical appearance and prosocial domains. More autism traits were also associated with less similarity between direct and reflected prosocial self-concept ratings. Lower self-esteem was additionally explained by alexithymia, specifically the difficulty to identify ones feelings. Participants showed medial prefrontal cortex activation in response to evaluating self-traits in both groups. Region-of-interest analyses revealed that medial prefrontal cortex and right temporal–parietal junction activation were differentially related to alexithymia traits. Together, this study provides a comprehensive understanding of self-concept and self-esteem in adolescents with varying levels autism and alexithymia traits.Lay abstractDeveloping a positive view of the self is important for maintaining a good mental health, as feeling negative about the self increases the risk of developing internalizing symptoms such as feelings of depression and anxiety. Even though autistic individuals regularly struggle with these internalizing feelings, and both self-concept and internalizing feelings are known to develop during adolescence, there is a lack of studies investigating the development of positive self-concept and self-esteem in autistic adolescents. Here, we studied academic, physical, and prosocial self-concept as well as self-esteem in adolescent males with and without autism on both the behavioral and neural level. We additionally focused on similarities in one’s own and peers’ perspectives on the self, and we assessed a potential role of alexithymia (i.e. having trouble identifying and describing one’s feelings) in developing a more negative view of the self. Results showed that there were no group differences in self-esteem, self-concept, or underlying neural activation. This shows that autistic adolescent males use the same neural processes when they evaluate their traits. However, regardless of clinical diagnosis, a higher number of autism traits was related to a less positive physical and prosocial self-concept, whereas more difficulty identifying one’s feelings was related to lowered self-esteem and less activation in medial prefrontal cortex during self-evaluations. Therefore, in treatment of autistic adolescents with low self-esteem, it is important to take into account and possibly aim to improve alexithymic traits as well.
The effect of autism phenotype and diagnosis disclosure on students’ desire for social distance from autistic peers
- February 27, 2024
Autism, Ahead of Print.
Autistic students report feeling lonely, rejected by peers which is associated with poorer well-being and lower academic results. This study aims to evaluate the effect of autism phenotype and diagnosis disclosure on students’ desire for social distance from autistic students and factors related to social distancing. 303 students (72.3% women; mean age = 22.37 years) participated in this study. Each participant was assigned to one of the six vignettes depicting students of different gender and diagnostic status. Respondents’ willingness to engage in different social situations, type and quality of prior contact with autism, autism knowledge and social desirability bias were measured. Results showed that students desired greater social distance from autistic males compared to autistic females, as well as from peers with non-disclosed diagnosis compared to those with disclosed diagnosis. Greater autism knowledge was related to less desire for social distance in non-disclosure, disclosure and in male autism phenotype conditions. Higher quality of contact was associated with less desire for social distance from autistic students with disclosed diagnosis. Type of contact was not related to social distance. Findings suggest that autistic male students and individuals with non-disclosed diagnosis might be more vulnerable to social exclusion.Lay abstractAutistic students experience loneliness, rejection from peers, which might negatively affect both their well-being, as well as academic results. Others have studied this topic, however, the existing research does not analyze the desire for social distance from autistic female students in higher education. The goal of this study was to evaluate whether the way autism is expressed and disclosing the autism diagnosis had an effect on students’ willingness to interact with autistic male and female students. We also analyzed participants’ knowledge about autism, contact with autistic people in the past and its pleasantness in relation to their willingness to interact with autistic students described in the scenarios of the present study. We found that students were less willing to interact with autistic male students compared to autistic female students, as well as with autistic students whose diagnosis was not disclosed compared to autistic students whose diagnosis was disclosed to the raters. In addition, students who reported more pleasant contact with autistic individuals in the past were more willing to socially interact with autistic students if their diagnosis was disclosed. Students with higher knowledge of autism expressed greater willingness to interact with autistic males and autistic students regardless of diagnosis disclosure. Findings suggest that autistic males and individuals who prefer not to disclose their diagnosis are more vulnerable to social exclusion. More subtle expressions of autism need to be researched further.
Autism, Ahead of Print.
Autistic students report feeling lonely, rejected by peers which is associated with poorer well-being and lower academic results. This study aims to evaluate the effect of autism phenotype and diagnosis disclosure on students’ desire for social distance from autistic students and factors related to social distancing. 303 students (72.3% women; mean age = 22.37 years) participated in this study. Each participant was assigned to one of the six vignettes depicting students of different gender and diagnostic status. Respondents’ willingness to engage in different social situations, type and quality of prior contact with autism, autism knowledge and social desirability bias were measured. Results showed that students desired greater social distance from autistic males compared to autistic females, as well as from peers with non-disclosed diagnosis compared to those with disclosed diagnosis. Greater autism knowledge was related to less desire for social distance in non-disclosure, disclosure and in male autism phenotype conditions. Higher quality of contact was associated with less desire for social distance from autistic students with disclosed diagnosis. Type of contact was not related to social distance. Findings suggest that autistic male students and individuals with non-disclosed diagnosis might be more vulnerable to social exclusion.Lay abstractAutistic students experience loneliness, rejection from peers, which might negatively affect both their well-being, as well as academic results. Others have studied this topic, however, the existing research does not analyze the desire for social distance from autistic female students in higher education. The goal of this study was to evaluate whether the way autism is expressed and disclosing the autism diagnosis had an effect on students’ willingness to interact with autistic male and female students. We also analyzed participants’ knowledge about autism, contact with autistic people in the past and its pleasantness in relation to their willingness to interact with autistic students described in the scenarios of the present study. We found that students were less willing to interact with autistic male students compared to autistic female students, as well as with autistic students whose diagnosis was not disclosed compared to autistic students whose diagnosis was disclosed to the raters. In addition, students who reported more pleasant contact with autistic individuals in the past were more willing to socially interact with autistic students if their diagnosis was disclosed. Students with higher knowledge of autism expressed greater willingness to interact with autistic males and autistic students regardless of diagnosis disclosure. Findings suggest that autistic males and individuals who prefer not to disclose their diagnosis are more vulnerable to social exclusion. More subtle expressions of autism need to be researched further.
Expression and co-regulation of negative emotion in 18-month-olds at increased likelihood for autism with diverse developmental outcomes
- February 26, 2024
Autism, Ahead of Print.
Emotion dysregulation is a common challenge for autistic individuals, yet research examining early emotion regulation processes in autism is lacking. The present study examined negative emotion expression and parent-child co-regulatory processes in 18-month-old younger siblings of autistic children (children with an “elevated likelihood” (EL) of autism) with diverse outcomes: autism, language delay without autism (EL-LD), and no delay/diagnosis (EL-ND). Thirty-nine toddlers were videotaped at home with a parent. Negative emotion and parent co-regulatory responses were coded from the video. Results indicated that autistic toddlers exhibited more high-intensity negative emotion than EL-ND toddlers. The likelihood of negative emotion continuing once initiated was higher for autistic and EL-LD toddlers. Parental co-regulation strategy use was similar across groups. Parental co-regulation reduced the likelihood of continued negative emotion, although the effect appeared somewhat weaker for autistic toddlers. This research corroborates evidence that increased risk for heightened and prolonged negative emotion starts early in autistic children and, to a lesser extent, in EL-LD children. Parents of all children were highly responsive, but coregulatory responses may be less effective at reducing negative emotions for autistic children. While more research is needed, the present study contributes to our understanding of the unique emotional experiences of autistic toddlers.Lay AbstractManaging negative emotion can be challenging for autistic individuals and their families from a young age. Parents help young children manage negative emotions by responding in comforting or supportive ways. Not much research has examined how negative emotions and parent responses to negative emotions are different in very young autistic children. This study used videotapes of 18-month-old toddlers and parents at home. We examined how much and how intensely toddlers expressed negative emotion in everyday situations, and how parents responded. Participants were younger siblings of autistic children, and we compared three groups—children that (1) later received an autism diagnosis; (2) had language delays but not autism; and (3) had no delays or autism. We found that autistic toddlers’ negative emotion was more likely to be intense and to continue once it started compared with children without delays or autism. Language-delayed toddlers also showed some, but not all these differences. Parents responded similarly to negative emotions in all groups. When parents used strategies to help, it reduced the chances of the negative emotions continuing, although it may have been less helpful for autistic toddlers. This study shows that autistic children may express more intense and long-lasting negative emotions from an early age. It also shows that parents of autistic children are very responsive to their children’s negative emotions, but these responses may not be as helpful to autistic children. While more research is needed, this study helps us understand how autistic toddlers may express and experience emotions differently.
Autism, Ahead of Print.
Emotion dysregulation is a common challenge for autistic individuals, yet research examining early emotion regulation processes in autism is lacking. The present study examined negative emotion expression and parent-child co-regulatory processes in 18-month-old younger siblings of autistic children (children with an “elevated likelihood” (EL) of autism) with diverse outcomes: autism, language delay without autism (EL-LD), and no delay/diagnosis (EL-ND). Thirty-nine toddlers were videotaped at home with a parent. Negative emotion and parent co-regulatory responses were coded from the video. Results indicated that autistic toddlers exhibited more high-intensity negative emotion than EL-ND toddlers. The likelihood of negative emotion continuing once initiated was higher for autistic and EL-LD toddlers. Parental co-regulation strategy use was similar across groups. Parental co-regulation reduced the likelihood of continued negative emotion, although the effect appeared somewhat weaker for autistic toddlers. This research corroborates evidence that increased risk for heightened and prolonged negative emotion starts early in autistic children and, to a lesser extent, in EL-LD children. Parents of all children were highly responsive, but coregulatory responses may be less effective at reducing negative emotions for autistic children. While more research is needed, the present study contributes to our understanding of the unique emotional experiences of autistic toddlers.Lay AbstractManaging negative emotion can be challenging for autistic individuals and their families from a young age. Parents help young children manage negative emotions by responding in comforting or supportive ways. Not much research has examined how negative emotions and parent responses to negative emotions are different in very young autistic children. This study used videotapes of 18-month-old toddlers and parents at home. We examined how much and how intensely toddlers expressed negative emotion in everyday situations, and how parents responded. Participants were younger siblings of autistic children, and we compared three groups—children that (1) later received an autism diagnosis; (2) had language delays but not autism; and (3) had no delays or autism. We found that autistic toddlers’ negative emotion was more likely to be intense and to continue once it started compared with children without delays or autism. Language-delayed toddlers also showed some, but not all these differences. Parents responded similarly to negative emotions in all groups. When parents used strategies to help, it reduced the chances of the negative emotions continuing, although it may have been less helpful for autistic toddlers. This study shows that autistic children may express more intense and long-lasting negative emotions from an early age. It also shows that parents of autistic children are very responsive to their children’s negative emotions, but these responses may not be as helpful to autistic children. While more research is needed, this study helps us understand how autistic toddlers may express and experience emotions differently.
Using Q-sort method to explore autistic students’ views of the impacts of their anxiety at school
- February 23, 2024
Autism, Ahead of Print.
Anxiety is a common co-occurring condition for autistic students; however, little is known about how anxiety may affect their social or academic outcomes in an educational setting. Furthermore, the perspectives of students themselves have rarely been included in the literature. Using Q-sort method, 45 autistic participants aged 7 to 17 years identified the outcomes they perceived were most impacted by their anxiety in the educational setting. The three outcomes most highly rated as being impacted by anxiety overall were academic outcomes. Using by-person factor analysis, six distinct factors, or ‘viewpoints’, were identified. These viewpoints reflect different combinations of outcomes affected by anxiety, including missing school or activities, reduced interactions with friends, reduced classroom communication and finding it harder to complete schoolwork. This study adds to the literature by using Q-sort method to enable autistic children and adolescents to report the impacts of their anxiety. Anxiety has additional impacts on the social and academic outcomes of autistic students, highlighting the need for increased awareness and training for parents and professionals, an individualised approach to student support and further research regarding the relationship between anxiety and academic outcomes.Lay abstractMany autistic students experience anxiety, but there is little research that explores how anxiety might affect autistic students in the school environment. In this study, 45 autistic students, aged 7 to 17 years, completed an online sorting activity to tell us how anxiety impacts them at school. The students were given 21 statements about possible social and academic effects of anxiety (for example, ‘When I’m worried it’s hard to start my schoolwork’ or ‘When I’m worried I talk less to my friends or other students’), and sorted them based on how much they agreed each statement was true for them. The three statements most highly rated as being impacted by anxiety were difficulties related to schoolwork. By comparing the information provided by students, six smaller groups of students were identified who sorted the statements in a similar order. These groups show that anxiety affects different autistic students in different ways, including missing school or activities, communicating less with friends and teachers and finding it harder to complete schoolwork. This online sorting activity enabled autistic students themselves to report how anxiety affects them at school. The results suggest that it is important to provide individualised support for autistic students who experience anxiety at school, to reduce the impact of their anxiety on their participation, communication and interactions, and schoolwork. Further research about the effects of anxiety on the academic outcomes of autistic students is also needed.
Autism, Ahead of Print.
Anxiety is a common co-occurring condition for autistic students; however, little is known about how anxiety may affect their social or academic outcomes in an educational setting. Furthermore, the perspectives of students themselves have rarely been included in the literature. Using Q-sort method, 45 autistic participants aged 7 to 17 years identified the outcomes they perceived were most impacted by their anxiety in the educational setting. The three outcomes most highly rated as being impacted by anxiety overall were academic outcomes. Using by-person factor analysis, six distinct factors, or ‘viewpoints’, were identified. These viewpoints reflect different combinations of outcomes affected by anxiety, including missing school or activities, reduced interactions with friends, reduced classroom communication and finding it harder to complete schoolwork. This study adds to the literature by using Q-sort method to enable autistic children and adolescents to report the impacts of their anxiety. Anxiety has additional impacts on the social and academic outcomes of autistic students, highlighting the need for increased awareness and training for parents and professionals, an individualised approach to student support and further research regarding the relationship between anxiety and academic outcomes.Lay abstractMany autistic students experience anxiety, but there is little research that explores how anxiety might affect autistic students in the school environment. In this study, 45 autistic students, aged 7 to 17 years, completed an online sorting activity to tell us how anxiety impacts them at school. The students were given 21 statements about possible social and academic effects of anxiety (for example, ‘When I’m worried it’s hard to start my schoolwork’ or ‘When I’m worried I talk less to my friends or other students’), and sorted them based on how much they agreed each statement was true for them. The three statements most highly rated as being impacted by anxiety were difficulties related to schoolwork. By comparing the information provided by students, six smaller groups of students were identified who sorted the statements in a similar order. These groups show that anxiety affects different autistic students in different ways, including missing school or activities, communicating less with friends and teachers and finding it harder to complete schoolwork. This online sorting activity enabled autistic students themselves to report how anxiety affects them at school. The results suggest that it is important to provide individualised support for autistic students who experience anxiety at school, to reduce the impact of their anxiety on their participation, communication and interactions, and schoolwork. Further research about the effects of anxiety on the academic outcomes of autistic students is also needed.
Social media shaping autism perception and identity
- February 23, 2024
Autism, Ahead of Print.
The aim of this study was to explore how autistic adults experienced using social media to find information about autism, and how they experienced online autistic communities. There is little research on the rationale why autistic people look for information on autism via social media, and on how such information is perceived from an autistic viewpoint. Twelve Norwegian autistic adults (aged 18–49 years) completed semi-structured interviews where they discussed social media and content specifically about autism and online autistic communities. Using reflexive thematic analysis, three main themes were developed. The themes were (1) Representation and Identity: An Online Journey; (2) An Unreliable, but Necessary Tool; and (3) Tensions and Discord. The findings indicated that even though social media was looked upon as an unreliable information source, the participants found information that helped them to learn about their experiences which had not been fully captured by the majority of the current research literature and online health sites. Also, social media groups for autistic people did not necessarily create a sense of community, as participants reported feeling alienated by hostile discussions. This study highlights the importance of having a greater variation and availability of information about autism online through official health channels.Lay abstractThis study suggested that social media can provide important information about autism to autistic people. We interviewed 12 autistic adults (aged 18–49 years) and talked to them about the use of social media to find both general information and content specifically about autism, autism identity and online autistic communities. There is little research exploring how autistic people find information about autism on social media and how that makes them feel. Therefore, it is important to ask autistic people about their experiences with using social media to obtain content about autism. The 12 participants explained that when they searched for information about autism on the official health pages, they often felt that the information they found was insufficient and could not answer their questions. In addition, they searched on social media platforms for information about autism despite that they perceived social media as an unreliable source. On the social media platforms, many found content that was positive in relation to their autistic identities. The participants also found comfort in some of the forums and social media groups and received helpful advice. Nevertheless, some of the discussions were aggressive and the participants felt alienated, which did not provide a sense of community online. The findings from the study may advice on what is missing in the official pages about autism, and highlight the need to involve the autistic community in writing the content on such platforms.
Autism, Ahead of Print.
The aim of this study was to explore how autistic adults experienced using social media to find information about autism, and how they experienced online autistic communities. There is little research on the rationale why autistic people look for information on autism via social media, and on how such information is perceived from an autistic viewpoint. Twelve Norwegian autistic adults (aged 18–49 years) completed semi-structured interviews where they discussed social media and content specifically about autism and online autistic communities. Using reflexive thematic analysis, three main themes were developed. The themes were (1) Representation and Identity: An Online Journey; (2) An Unreliable, but Necessary Tool; and (3) Tensions and Discord. The findings indicated that even though social media was looked upon as an unreliable information source, the participants found information that helped them to learn about their experiences which had not been fully captured by the majority of the current research literature and online health sites. Also, social media groups for autistic people did not necessarily create a sense of community, as participants reported feeling alienated by hostile discussions. This study highlights the importance of having a greater variation and availability of information about autism online through official health channels.Lay abstractThis study suggested that social media can provide important information about autism to autistic people. We interviewed 12 autistic adults (aged 18–49 years) and talked to them about the use of social media to find both general information and content specifically about autism, autism identity and online autistic communities. There is little research exploring how autistic people find information about autism on social media and how that makes them feel. Therefore, it is important to ask autistic people about their experiences with using social media to obtain content about autism. The 12 participants explained that when they searched for information about autism on the official health pages, they often felt that the information they found was insufficient and could not answer their questions. In addition, they searched on social media platforms for information about autism despite that they perceived social media as an unreliable source. On the social media platforms, many found content that was positive in relation to their autistic identities. The participants also found comfort in some of the forums and social media groups and received helpful advice. Nevertheless, some of the discussions were aggressive and the participants felt alienated, which did not provide a sense of community online. The findings from the study may advice on what is missing in the official pages about autism, and highlight the need to involve the autistic community in writing the content on such platforms.
Problems with “problem behavior”: A secondary systematic review of intervention research on transition-age autistic youth
- February 23, 2024
Autism, Ahead of Print.
In this secondary systematic review of single-case and controlled group design intervention studies conducted with transition-age autistic youth, we examined features of 48 studies with 273 participants that measured at least one “problem behavior” outcome (Prospero registration number: 231764). We searched 11 databases for relevant studies, and the final search date was November 2022. Our primary aims were to determine how problem behaviors were defined and selected for reduction, how functions were determined, and the interventions used to address them. Studies were coded and codes were tabulated and converted to percentages to answer each research question. Thirty-eight percent of studies defined problem behavior, and 88% of studies implemented behavioral strategies to reduce problem behaviors. Behaviors with low potential for harm constituted the majority of the 67 outcome variables (61%), while behaviors with high potential for harm were a minority (39%). The most common intervention target was stereotypic behavior. Fewer than half of studies: reported procedures for selecting behaviors, reported procedures to determine behavior function, or ascribed functions to behaviors. We were unable to report on some demographic features of participants (e.g. race/ethnicity) because they were rarely reported in primary studies. We conclude that problem behavior is poorly conceptualized in this research.Lay abstractIn a previous study, we looked at research done on strategies to support autistic people who were between 14 and 22 years old. For this study, we looked at all of the studies in our previous study that tried to decrease or stop autistic people from doing certain things—many researchers call these things “problem behavior.” There were 48 studies that tried to reduce problem behavior, and most of them used strategies like prompting and reinforcement to try get autistic people to change their behavior. We found many things wrong with these studies. Most of them did not define the group of behaviors they were trying to stop autistic people from doing. None of the studies looked at whether any side effects happened when they tried the strategy they were studying. Also, most of the studies tried to stop autistic people from doing behaviors that probably were not harmful, like stereotypic behavior. Most of the studies did not say how they decided that the behaviors they tried to stop were a problem for the autistic people in the study, and most studies did not try to figure out why the autistic people in the study did the behaviors the researchers were trying to stop them from doing.
Autism, Ahead of Print.
In this secondary systematic review of single-case and controlled group design intervention studies conducted with transition-age autistic youth, we examined features of 48 studies with 273 participants that measured at least one “problem behavior” outcome (Prospero registration number: 231764). We searched 11 databases for relevant studies, and the final search date was November 2022. Our primary aims were to determine how problem behaviors were defined and selected for reduction, how functions were determined, and the interventions used to address them. Studies were coded and codes were tabulated and converted to percentages to answer each research question. Thirty-eight percent of studies defined problem behavior, and 88% of studies implemented behavioral strategies to reduce problem behaviors. Behaviors with low potential for harm constituted the majority of the 67 outcome variables (61%), while behaviors with high potential for harm were a minority (39%). The most common intervention target was stereotypic behavior. Fewer than half of studies: reported procedures for selecting behaviors, reported procedures to determine behavior function, or ascribed functions to behaviors. We were unable to report on some demographic features of participants (e.g. race/ethnicity) because they were rarely reported in primary studies. We conclude that problem behavior is poorly conceptualized in this research.Lay abstractIn a previous study, we looked at research done on strategies to support autistic people who were between 14 and 22 years old. For this study, we looked at all of the studies in our previous study that tried to decrease or stop autistic people from doing certain things—many researchers call these things “problem behavior.” There were 48 studies that tried to reduce problem behavior, and most of them used strategies like prompting and reinforcement to try get autistic people to change their behavior. We found many things wrong with these studies. Most of them did not define the group of behaviors they were trying to stop autistic people from doing. None of the studies looked at whether any side effects happened when they tried the strategy they were studying. Also, most of the studies tried to stop autistic people from doing behaviors that probably were not harmful, like stereotypic behavior. Most of the studies did not say how they decided that the behaviors they tried to stop were a problem for the autistic people in the study, and most studies did not try to figure out why the autistic people in the study did the behaviors the researchers were trying to stop them from doing.
The use of psychotropic medications in autistic individuals (21 years and younger) in Western Australia: A preliminary investigation
- February 22, 2024
Autism, Ahead of Print.
There is a significant variability in the prevalence of psychotropic medication use among young autistic persons worldwide and this is under-studied in Australia. Apart from risperidone, approved by the Therapeutic Goods Administration to manage challenging behaviour, the appropriateness of other psychotropic medications prescribed to young autistic persons warrants scrutiny. This retrospective study aims to gain initial insight into the magnitude, types and indications of psychotropic medication use in autistic children and adolescents in Western Australia. We analysed de-identified data from 239 autistic children and adolescents (⩽21 years) who participated in the Western Australian Autism Biological Registry between 2011 and 2015 and who completed a questionnaire regarding medication use. One-quarter (n = 66, 28%) of young autistic people reported using a total of 137 medications. Most (n = 46, 70%) of those medicated were under 12 years of age; half (n = 33) were 6–12 years and a fifth (n = 13) were under 6 years. The most used medications were stimulants (n = 35, 53.0%), followed by antidepressants (n = 24, 36.4%), antiepileptics (n = 21, 31.8%), sedatives (n = 15, 22.7%) and antipsychotics (n = 14, 21.2%). These medications were mainly to manage attention deficit hyperactivity disorder, challenging behaviours, seizures, insomnia, undefined anxiety, depression and mood instability. While most autistic young people in the Western Australian Autism Biological Registry did not report using psychotropic medication, over a quarter were prescribed medications, primarily stimulants, to manage symptoms of attention deficit hyperactivity disorder. Various medications, including risperidone, were used to help manage challenging behaviours. Medication use should be studied more comprehensively in a larger cohort of autistic persons to confirm our current preliminary observations. Further, future studies should monitor the effectiveness and safety outcomes of such medications due to a limited understanding of their effectiveness in managing the atypical presentation of co-occurring disorders in young autistic persons.Lay abstractPrescriptions and use of medications to treat mental health conditions in young autistic populations are inconsistent worldwide. This makes it hard to compare findings from international studies to the Australian autistic population, where there are limited relevant studies. Apart from risperidone, there are no other medications specified for direct use in autistic persons. This study aims to gain initial broad understanding of the use of medications, commonly prescribed for mental health conditions, specifically by autistics under the age of 21 years. We analysed data that were previously collected as part of the Western Australian Autism Biological Registry between 2011 and 2015 which amounted to 239 surveys completed on young persons with diagnosed autism. The questionnaires included information on co-occurring conditions, current or previous use of medications and reasons for use of the medications. Only one-quarter of the participants in this study reported using at least one mental health–related medication in their lifetime. The most reported medications were stimulants, antidepressants and antiepileptics. The reasons for using medication included managing attention deficit hyperactivity disorder, challenging behaviours, seizures, sleep difficulties and symptoms of anxiety and depression. The number of individuals reporting medication use in this study was lower compared to other developed countries. Nevertheless, these medications should be monitored due to limited understanding of their use to manage co-occurring symptoms in young autistic persons. The findings highlight the importance of ongoing research to better understand mental health–related medications and inform best practice.
Autism, Ahead of Print.
There is a significant variability in the prevalence of psychotropic medication use among young autistic persons worldwide and this is under-studied in Australia. Apart from risperidone, approved by the Therapeutic Goods Administration to manage challenging behaviour, the appropriateness of other psychotropic medications prescribed to young autistic persons warrants scrutiny. This retrospective study aims to gain initial insight into the magnitude, types and indications of psychotropic medication use in autistic children and adolescents in Western Australia. We analysed de-identified data from 239 autistic children and adolescents (⩽21 years) who participated in the Western Australian Autism Biological Registry between 2011 and 2015 and who completed a questionnaire regarding medication use. One-quarter (n = 66, 28%) of young autistic people reported using a total of 137 medications. Most (n = 46, 70%) of those medicated were under 12 years of age; half (n = 33) were 6–12 years and a fifth (n = 13) were under 6 years. The most used medications were stimulants (n = 35, 53.0%), followed by antidepressants (n = 24, 36.4%), antiepileptics (n = 21, 31.8%), sedatives (n = 15, 22.7%) and antipsychotics (n = 14, 21.2%). These medications were mainly to manage attention deficit hyperactivity disorder, challenging behaviours, seizures, insomnia, undefined anxiety, depression and mood instability. While most autistic young people in the Western Australian Autism Biological Registry did not report using psychotropic medication, over a quarter were prescribed medications, primarily stimulants, to manage symptoms of attention deficit hyperactivity disorder. Various medications, including risperidone, were used to help manage challenging behaviours. Medication use should be studied more comprehensively in a larger cohort of autistic persons to confirm our current preliminary observations. Further, future studies should monitor the effectiveness and safety outcomes of such medications due to a limited understanding of their effectiveness in managing the atypical presentation of co-occurring disorders in young autistic persons.Lay abstractPrescriptions and use of medications to treat mental health conditions in young autistic populations are inconsistent worldwide. This makes it hard to compare findings from international studies to the Australian autistic population, where there are limited relevant studies. Apart from risperidone, there are no other medications specified for direct use in autistic persons. This study aims to gain initial broad understanding of the use of medications, commonly prescribed for mental health conditions, specifically by autistics under the age of 21 years. We analysed data that were previously collected as part of the Western Australian Autism Biological Registry between 2011 and 2015 which amounted to 239 surveys completed on young persons with diagnosed autism. The questionnaires included information on co-occurring conditions, current or previous use of medications and reasons for use of the medications. Only one-quarter of the participants in this study reported using at least one mental health–related medication in their lifetime. The most reported medications were stimulants, antidepressants and antiepileptics. The reasons for using medication included managing attention deficit hyperactivity disorder, challenging behaviours, seizures, sleep difficulties and symptoms of anxiety and depression. The number of individuals reporting medication use in this study was lower compared to other developed countries. Nevertheless, these medications should be monitored due to limited understanding of their use to manage co-occurring symptoms in young autistic persons. The findings highlight the importance of ongoing research to better understand mental health–related medications and inform best practice.
A qualitative exploration of an autism-specific self-compassion program: The ASPAA
- February 22, 2024
Autism, Ahead of Print.
As mental health concerns coupled with inadequate supports have been described as reaching crisis proportions in autistic people, there is a pressing need for accessible and effective support systems. While self-compassion has shown various benefits in the general population, its application in supporting autistic individuals remains limited. This study investigated the experiences of 39 autistic adults who participated in an autism-specific online self-compassion program. The program included a series of five modules which incorporated psychoeducation, meditation, and self-reflective exercises that were completed over a 5-week period. Qualitative data was collected through weekly check-ins and a post-program survey, which underwent thematic analysis through the lens of an autistic researcher resulting in four key themes: the positive impact of self-compassion, challenges faced during the program, recognizing self-compassion as a journey, and the value of program adaptations. These findings shed light on the experiences of autistic adults engaging with self-compassion interventions, highlighting both the benefits and barriers they encountered. The study underscores the importance of developing tailored interventions that consider the unique needs and perspectives of autistic individuals to promote improved mental health outcomes and foster inclusivity.Lay abstractAutistic people often struggle to find the right support for their mental health. We wanted to change that by trying a new approach to help autistic adults with their emotions and well-being. We focused on something called “self-compassion,” which is a way of being kind and understanding toward ourselves. This approach has worked well for many people, but we didn’t know if it would work for autistic individuals. We invited 39 autistic adults to join an online program that taught them about self-compassion. The program lasted 5 weeks and included educational materials, meditation exercises, and self-reflection activities. We asked the participants for feedback each week and at the end of the program. From their responses, we discovered four important things. First, self-compassion had a big positive impact on the well-being of autistic adults. Second, they faced some challenges during the program. Third, they saw self-compassion as a journey that takes time and practice. Finally, they described how they valued changes to help autistic people engage with the program. Our findings show that self-compassion can really help autistic adults. We learned about the benefits they experienced and the difficulties they faced. Most importantly, we found that personalized support is crucial for autistic individuals. By creating programs that consider their specific needs, we can improve their mental health and make their lives better.
Autism, Ahead of Print.
As mental health concerns coupled with inadequate supports have been described as reaching crisis proportions in autistic people, there is a pressing need for accessible and effective support systems. While self-compassion has shown various benefits in the general population, its application in supporting autistic individuals remains limited. This study investigated the experiences of 39 autistic adults who participated in an autism-specific online self-compassion program. The program included a series of five modules which incorporated psychoeducation, meditation, and self-reflective exercises that were completed over a 5-week period. Qualitative data was collected through weekly check-ins and a post-program survey, which underwent thematic analysis through the lens of an autistic researcher resulting in four key themes: the positive impact of self-compassion, challenges faced during the program, recognizing self-compassion as a journey, and the value of program adaptations. These findings shed light on the experiences of autistic adults engaging with self-compassion interventions, highlighting both the benefits and barriers they encountered. The study underscores the importance of developing tailored interventions that consider the unique needs and perspectives of autistic individuals to promote improved mental health outcomes and foster inclusivity.Lay abstractAutistic people often struggle to find the right support for their mental health. We wanted to change that by trying a new approach to help autistic adults with their emotions and well-being. We focused on something called “self-compassion,” which is a way of being kind and understanding toward ourselves. This approach has worked well for many people, but we didn’t know if it would work for autistic individuals. We invited 39 autistic adults to join an online program that taught them about self-compassion. The program lasted 5 weeks and included educational materials, meditation exercises, and self-reflection activities. We asked the participants for feedback each week and at the end of the program. From their responses, we discovered four important things. First, self-compassion had a big positive impact on the well-being of autistic adults. Second, they faced some challenges during the program. Third, they saw self-compassion as a journey that takes time and practice. Finally, they described how they valued changes to help autistic people engage with the program. Our findings show that self-compassion can really help autistic adults. We learned about the benefits they experienced and the difficulties they faced. Most importantly, we found that personalized support is crucial for autistic individuals. By creating programs that consider their specific needs, we can improve their mental health and make their lives better.
Satisfaction with social connectedness is associated with depression and anxiety symptoms in neurodiverse first-semester college students
- February 21, 2024
Autism, Ahead of Print.
Social difficulties and mental health are primary behavioral health concerns in autistic young adults, perhaps especially during key life transitions such as entering college. This study evaluated how dissatisfaction with social connectedness may predict and/or maintain depression and anxiety symptoms in neurodiverse, first-semester, undergraduate students (N = 263; n = 105 with diagnosed or suspected autism). Participation included a baseline survey battery, a brief survey completed twice per week across 12 weeks, and an endpoint survey battery. Social dissatisfaction at baseline was prospectively associated with biweekly ratings of depression symptoms, when controlling for baseline depressive symptoms. Social dissatisfaction was synchronously related to elevated sadness, anhedonia, and anxiety throughout the semester. These relationships were generally consistent across levels of baseline social motivation; however, there was one significant moderation effect—the negative relationship between baseline social satisfaction and anxiety was strongest for more socially motivated participants. More autistic traits were related to lower social satisfaction at baseline and greater mood concerns across timepoints. In contrast, greater autistic traits at baseline were related to greater satisfaction with social connectedness throughout the semester. Results support ongoing efforts to address mental health in autistic college students by highlighting the importance of social satisfaction.Lay abstractHow satisfied people feel with their social connections and support is related to mental health outcomes for many different types of people. People may feel less socially connected at some times in their life—like when they start college. Feeling disconnected from others could lead to depression or anxiety. The transition to college may be especially difficult for autistic students as they are more likely to have difficulties adjusting socially. In our study, we asked 263 college students to answer questions about their emotions and social satisfaction twice per week during their first semester of college. We found that students who reported being less satisfied with their social connectedness (either at the beginning or throughout the semester) tended to express more symptoms of depression and anxiety. This relationship between social satisfaction and anxiety was even stronger for people who had a strong desire for social interaction (i.e. were more socially motivated). Students with more autistic traits tended to report more mood concerns, and they also reported being less satisfied with friendships at the beginning of the semester. This information may help to support ongoing efforts to better address mental health in autistic college students by encouraging efforts to improve social satisfaction.
Autism, Ahead of Print.
Social difficulties and mental health are primary behavioral health concerns in autistic young adults, perhaps especially during key life transitions such as entering college. This study evaluated how dissatisfaction with social connectedness may predict and/or maintain depression and anxiety symptoms in neurodiverse, first-semester, undergraduate students (N = 263; n = 105 with diagnosed or suspected autism). Participation included a baseline survey battery, a brief survey completed twice per week across 12 weeks, and an endpoint survey battery. Social dissatisfaction at baseline was prospectively associated with biweekly ratings of depression symptoms, when controlling for baseline depressive symptoms. Social dissatisfaction was synchronously related to elevated sadness, anhedonia, and anxiety throughout the semester. These relationships were generally consistent across levels of baseline social motivation; however, there was one significant moderation effect—the negative relationship between baseline social satisfaction and anxiety was strongest for more socially motivated participants. More autistic traits were related to lower social satisfaction at baseline and greater mood concerns across timepoints. In contrast, greater autistic traits at baseline were related to greater satisfaction with social connectedness throughout the semester. Results support ongoing efforts to address mental health in autistic college students by highlighting the importance of social satisfaction.Lay abstractHow satisfied people feel with their social connections and support is related to mental health outcomes for many different types of people. People may feel less socially connected at some times in their life—like when they start college. Feeling disconnected from others could lead to depression or anxiety. The transition to college may be especially difficult for autistic students as they are more likely to have difficulties adjusting socially. In our study, we asked 263 college students to answer questions about their emotions and social satisfaction twice per week during their first semester of college. We found that students who reported being less satisfied with their social connectedness (either at the beginning or throughout the semester) tended to express more symptoms of depression and anxiety. This relationship between social satisfaction and anxiety was even stronger for people who had a strong desire for social interaction (i.e. were more socially motivated). Students with more autistic traits tended to report more mood concerns, and they also reported being less satisfied with friendships at the beginning of the semester. This information may help to support ongoing efforts to better address mental health in autistic college students by encouraging efforts to improve social satisfaction.
Literacy in nonspeaking autistic people
- February 21, 2024
Autism, Ahead of Print.
Autistic people who cannot speak risk being underestimated. Their inability to speak, along with other unconventional behaviors and mannerisms, can give rise to limiting assumptions about their capacities, including their capacity to acquire literacy. In this preregistered study, we developed a task to investigate whether autistic adolescents and adults with limited or no phrase speech (N = 31) have learned English orthographic conventions. Participants played a game that involved tapping sequentially pulsing targets on an iPad as quickly as they could. Three patterns in their response times suggest they know how to spell: (a) They were faster to tap letters of the alphabet that pulsed in sequences that spelled sentences than letters or nonsense symbols that pulsed in closely matched but meaningless sequences; (b) they responded more quickly to pairs of letters in meaningful sequences the more often the letters co-occur in English; and (c) they spontaneously paused before tapping the first pulsing letter of a new word. These findings suggest that nonspeaking autistic people can acquire foundational literacy skills. With appropriate instruction and support, it might be possible to harness these skills to provide nonspeaking autistic people access to written forms of communication as an alternative to speech.Lay abstractMany autistic people who do not talk cannot tell other people what they know or what they are thinking. As a result, they might not be able to go to the schools they want, share feelings with friends, or get jobs they like. It might be possible to teach them to type on a computer or tablet instead of talking. But first, they would have to know how to spell. Some people do not believe that nonspeaking autistic people can learn to spell. We did a study to see if they can. We tested 31 autistic teenagers and adults who do not talk much or at all. They played a game on an iPad where they had to tap flashing letters. After they played the game, we looked at how fast they tapped the letters. They did three things that people who know how to spell would do. First, they tapped flashing letters faster when the letters spelled out sentences than when the letters made no sense. Second, they tapped letters that usually go together faster than letters that do not usually go together. This shows that they knew some spelling rules. Third, they paused before tapping the first letter of a new word. This shows that they knew where one word ended and the next word began. These results suggest that many autistic people who do not talk can learn how to spell. If they are given appropriate opportunities, they might be able to learn to communicate by typing.
Autism, Ahead of Print.
Autistic people who cannot speak risk being underestimated. Their inability to speak, along with other unconventional behaviors and mannerisms, can give rise to limiting assumptions about their capacities, including their capacity to acquire literacy. In this preregistered study, we developed a task to investigate whether autistic adolescents and adults with limited or no phrase speech (N = 31) have learned English orthographic conventions. Participants played a game that involved tapping sequentially pulsing targets on an iPad as quickly as they could. Three patterns in their response times suggest they know how to spell: (a) They were faster to tap letters of the alphabet that pulsed in sequences that spelled sentences than letters or nonsense symbols that pulsed in closely matched but meaningless sequences; (b) they responded more quickly to pairs of letters in meaningful sequences the more often the letters co-occur in English; and (c) they spontaneously paused before tapping the first pulsing letter of a new word. These findings suggest that nonspeaking autistic people can acquire foundational literacy skills. With appropriate instruction and support, it might be possible to harness these skills to provide nonspeaking autistic people access to written forms of communication as an alternative to speech.Lay abstractMany autistic people who do not talk cannot tell other people what they know or what they are thinking. As a result, they might not be able to go to the schools they want, share feelings with friends, or get jobs they like. It might be possible to teach them to type on a computer or tablet instead of talking. But first, they would have to know how to spell. Some people do not believe that nonspeaking autistic people can learn to spell. We did a study to see if they can. We tested 31 autistic teenagers and adults who do not talk much or at all. They played a game on an iPad where they had to tap flashing letters. After they played the game, we looked at how fast they tapped the letters. They did three things that people who know how to spell would do. First, they tapped flashing letters faster when the letters spelled out sentences than when the letters made no sense. Second, they tapped letters that usually go together faster than letters that do not usually go together. This shows that they knew some spelling rules. Third, they paused before tapping the first letter of a new word. This shows that they knew where one word ended and the next word began. These results suggest that many autistic people who do not talk can learn how to spell. If they are given appropriate opportunities, they might be able to learn to communicate by typing.
The Broad Autism Phenotype–International Test (BAP-IT): A two-domain-based test for the assessment of the broad autism phenotype
- February 17, 2024
Autism, Ahead of Print.
The broad autism phenotype is the phenotypic expression of the primary characteristics of autism. However, currently available tests do not agree with the two-domain operationalization of broad autism phenotype or autism, and their internal structure has shown instability across applications. This study presents the Broad Autism Phenotype–International Test, the first such test designed to target a two-domain operationalization in Spain and the United Kingdom. A broad pilot study was conducted in three community samples, two from Spain (ES1, N = 970; ES2, N = 460) and one from the United Kingdom (N = 530). The Broad Autism Phenotype–International Test consists of 20 items distributed into the SOCIAL-BAP and RIRE-BAP dimensions, representing the seven autistic subdomains. Common factor approaches were used to find a simple and invariant factor structure between countries. The Broad Autism Phenotype–International Test presents full metric invariance between two Spanish samples, partial invariance between countries, and adequate omega reliability estimation. Evidence-based results on the relationships of the SOCIAL-BAP and RIRE-BAP to other variables (the Social Responsiveness Scale-2 and the Broad Autism Phenotype Questionnaire) support the interpretation of its scores for the intended uses. The evidence provided in this article shows that the Broad Autism Phenotype–International Test functions adequately compared to other available broad autism phenotype tests, such as the Broad Autism Phenotype Questionnaire.Lay abstractThe broad autism phenotype refers to a group of behaviors related to autism spectrum disorder, but that appear to a lesser extent. Its assessment has been performed through outdated broad autism phenotype/autism spectrum disorder definitions and tests. To address this problem, this study presents the development of a new test, the Broad Autism Phenotype–International Test, a 20-item measure consisting of two dimensions, SOCIAL-BAP and RIRE-BAP, targeting the two-domain operationalization of autism spectrum disorder in Spain and the United Kingdom. Unlike the Broad Autism Phenotype Questionnaire, this test received empirical support as a quick and effective broad autism phenotype measure that can facilitate both broad autism phenotype/autism spectrum disorder research and interventions. This is the first step to studying the BAP in several Spanish and English-speaking countries.
Autism, Ahead of Print.
The broad autism phenotype is the phenotypic expression of the primary characteristics of autism. However, currently available tests do not agree with the two-domain operationalization of broad autism phenotype or autism, and their internal structure has shown instability across applications. This study presents the Broad Autism Phenotype–International Test, the first such test designed to target a two-domain operationalization in Spain and the United Kingdom. A broad pilot study was conducted in three community samples, two from Spain (ES1, N = 970; ES2, N = 460) and one from the United Kingdom (N = 530). The Broad Autism Phenotype–International Test consists of 20 items distributed into the SOCIAL-BAP and RIRE-BAP dimensions, representing the seven autistic subdomains. Common factor approaches were used to find a simple and invariant factor structure between countries. The Broad Autism Phenotype–International Test presents full metric invariance between two Spanish samples, partial invariance between countries, and adequate omega reliability estimation. Evidence-based results on the relationships of the SOCIAL-BAP and RIRE-BAP to other variables (the Social Responsiveness Scale-2 and the Broad Autism Phenotype Questionnaire) support the interpretation of its scores for the intended uses. The evidence provided in this article shows that the Broad Autism Phenotype–International Test functions adequately compared to other available broad autism phenotype tests, such as the Broad Autism Phenotype Questionnaire.Lay abstractThe broad autism phenotype refers to a group of behaviors related to autism spectrum disorder, but that appear to a lesser extent. Its assessment has been performed through outdated broad autism phenotype/autism spectrum disorder definitions and tests. To address this problem, this study presents the development of a new test, the Broad Autism Phenotype–International Test, a 20-item measure consisting of two dimensions, SOCIAL-BAP and RIRE-BAP, targeting the two-domain operationalization of autism spectrum disorder in Spain and the United Kingdom. Unlike the Broad Autism Phenotype Questionnaire, this test received empirical support as a quick and effective broad autism phenotype measure that can facilitate both broad autism phenotype/autism spectrum disorder research and interventions. This is the first step to studying the BAP in several Spanish and English-speaking countries.
Investigating the impact of probiotic on neurological outcomes in Rett syndrome: A randomized, double-blind, and placebo-controlled pilot study
- February 16, 2024
Autism, Ahead of Print.
This pilot study investigates the feasibility and assesses the impact of Lactobacillus plantarum PS128 probiotics on the neurological function in Rett syndrome. We conducted a randomized, double-blind, and placebo-controlled trial on Rett syndrome with MECP2 mutation aged between 1 and 50 years in Taiwan. In this pilot study, twice-daily L. plantarum PS128 or placebo was administered for 16 weeks. In addition to feasibility, we also assessed the changes utilizing the Mullen Scales of Early Learning. In total, 36 participants were finally randomized into L. plantarum PS128 (n = 18) or placebo (n = 18) groups. At the end of intervention, the retention rates were 100% for L. plantarum PS128 and 94.44% for placebo, with withdrawal rates of 5.56% for the placebo group. Both groups tolerated well, except for one L. plantarum PS128 participant who reported loose stool. The probiotic group showed a change of 2.19 ± 3.76, while the placebo group had −0.85 ± 5.09 (p = 0.051) in the total age-equivalent scores of Mullen Scales of Early Learning. There was a significant difference in the change of the total score on the Burke–Fahn–Marsden Movement Scale between probiotc group and placebo group (−12.19 ± 12.12 vs −4.59 ± 4.20, p = 0.020). In leg dystonia, the probiotic group exhibited a change of −4.11 ± 5.11 compared with −0.38 ± 1.50 in the placebo group (p = 0.008). Our findings affirm the feasibility of L. plantarum PS128 in Rett syndrome. Future clinical trials are mandatory to further explore its long-term impact on Rett syndrome.Lay abstractRett syndrome often involves gastrointestinal symptoms and gut microbiota imbalances. We conducted a study to explore the feasibility of probiotic Lactobacillus plantarum PS128 and the impact on neurological functions in Rett syndrome. The results of our investigation demonstrated that the supplementation of probiotic L. plantarum PS128 was feasible and well tolerated, with 100% retention rate and 0% withdrawal rate. In addition, there was only one participant who had loose stool after taking L. plantarum PS128. Further, there was a tendency to enhance overall cognitive developmental level, as assessed using Mullen Scales of Early Learning. In addition, it significantly improved dystonia, as assessed using the Burke–Fahn–Marsden Movement Scale, in comparison with the placebo group. This study provides a strong foundation for future research and clinical trials exploring the potential of L. plantarum PS128 probiotics as a complementary therapy for individuals with Rett syndrome.
Autism, Ahead of Print.
This pilot study investigates the feasibility and assesses the impact of Lactobacillus plantarum PS128 probiotics on the neurological function in Rett syndrome. We conducted a randomized, double-blind, and placebo-controlled trial on Rett syndrome with MECP2 mutation aged between 1 and 50 years in Taiwan. In this pilot study, twice-daily L. plantarum PS128 or placebo was administered for 16 weeks. In addition to feasibility, we also assessed the changes utilizing the Mullen Scales of Early Learning. In total, 36 participants were finally randomized into L. plantarum PS128 (n = 18) or placebo (n = 18) groups. At the end of intervention, the retention rates were 100% for L. plantarum PS128 and 94.44% for placebo, with withdrawal rates of 5.56% for the placebo group. Both groups tolerated well, except for one L. plantarum PS128 participant who reported loose stool. The probiotic group showed a change of 2.19 ± 3.76, while the placebo group had −0.85 ± 5.09 (p = 0.051) in the total age-equivalent scores of Mullen Scales of Early Learning. There was a significant difference in the change of the total score on the Burke–Fahn–Marsden Movement Scale between probiotc group and placebo group (−12.19 ± 12.12 vs −4.59 ± 4.20, p = 0.020). In leg dystonia, the probiotic group exhibited a change of −4.11 ± 5.11 compared with −0.38 ± 1.50 in the placebo group (p = 0.008). Our findings affirm the feasibility of L. plantarum PS128 in Rett syndrome. Future clinical trials are mandatory to further explore its long-term impact on Rett syndrome.Lay abstractRett syndrome often involves gastrointestinal symptoms and gut microbiota imbalances. We conducted a study to explore the feasibility of probiotic Lactobacillus plantarum PS128 and the impact on neurological functions in Rett syndrome. The results of our investigation demonstrated that the supplementation of probiotic L. plantarum PS128 was feasible and well tolerated, with 100% retention rate and 0% withdrawal rate. In addition, there was only one participant who had loose stool after taking L. plantarum PS128. Further, there was a tendency to enhance overall cognitive developmental level, as assessed using Mullen Scales of Early Learning. In addition, it significantly improved dystonia, as assessed using the Burke–Fahn–Marsden Movement Scale, in comparison with the placebo group. This study provides a strong foundation for future research and clinical trials exploring the potential of L. plantarum PS128 probiotics as a complementary therapy for individuals with Rett syndrome.
Access to Part C, Early Intervention for children younger than 4 years evaluated for autism spectrum disorder
- February 16, 2024
Autism, Ahead of Print.
Despite consensus on the importance of early detection and intervention for autistic children, health disparities exist, limiting access to timely services. One specific service type in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study aimed to assess access to Part C, Early Intervention services for children who were evaluated for autism spectrum disorder and to examine factors that predicted parent-reported access to these services. This study extracted sociodemographic and service access data from the medical records of 709 children aged 12–40 months who were evaluated for autism spectrum disorder. Results showed that only 50% of the sample had reportedly accessed Part C, Early Intervention services. Those who identified as Black had decreased odds of having accessed Part C, Early Intervention, relative to those who identified as White, while those with a lower age of first parent concern had increased odds of having accessed Part C, Early Intervention. When inputting the independently significant variables into the model, both variables, identifying as Black and a lower age of first concern, remained significantly associated with accessing Part C, Early Intervention. Future work should investigate how these disparities come to be.Lay abstractHealth disparities are defined as preventable differences in the opportunities to achieve optimal health outcomes experienced by marginalized and underrepresented communities. For families with autistic children, health disparities limit accessing early intervention services—which have been found to improve quality of life and other outcomes. One specific early intervention service in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study adds to this topic by examining which factors impact accessing Part C, Early Intervention services for children who were evaluated for autism. Results showed that only half of the sample received these services despite there being concerns about development for all children. In addition, results showed that those who identified as Black had decreased odds of having accessed Part C, Early Intervention compared to those who identified as White. These results suggest that there are disparities when it comes to accessing important early intervention services that may be negatively impacting the Black autistic community.
Autism, Ahead of Print.
Despite consensus on the importance of early detection and intervention for autistic children, health disparities exist, limiting access to timely services. One specific service type in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study aimed to assess access to Part C, Early Intervention services for children who were evaluated for autism spectrum disorder and to examine factors that predicted parent-reported access to these services. This study extracted sociodemographic and service access data from the medical records of 709 children aged 12–40 months who were evaluated for autism spectrum disorder. Results showed that only 50% of the sample had reportedly accessed Part C, Early Intervention services. Those who identified as Black had decreased odds of having accessed Part C, Early Intervention, relative to those who identified as White, while those with a lower age of first parent concern had increased odds of having accessed Part C, Early Intervention. When inputting the independently significant variables into the model, both variables, identifying as Black and a lower age of first concern, remained significantly associated with accessing Part C, Early Intervention. Future work should investigate how these disparities come to be.Lay abstractHealth disparities are defined as preventable differences in the opportunities to achieve optimal health outcomes experienced by marginalized and underrepresented communities. For families with autistic children, health disparities limit accessing early intervention services—which have been found to improve quality of life and other outcomes. One specific early intervention service in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study adds to this topic by examining which factors impact accessing Part C, Early Intervention services for children who were evaluated for autism. Results showed that only half of the sample received these services despite there being concerns about development for all children. In addition, results showed that those who identified as Black had decreased odds of having accessed Part C, Early Intervention compared to those who identified as White. These results suggest that there are disparities when it comes to accessing important early intervention services that may be negatively impacting the Black autistic community.
The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis
- February 16, 2024
Autism, Ahead of Print.
There is a dearth of research into the experience of adult diagnosis of autism spectrum disorder, and targeted research is needed to understand the needs of these adults. The aim of this coproduced review was to assess existing qualitative data on the lived experience of receiving an autism spectrum disorder diagnosis, identify recurring themes, and synthesize them into a visual model representing the journey through diagnosis. Using thematic analysis, we analyzed qualitative data from 24 studies of adult experiences of autism spectrum disorder diagnosis from PsycINFO, Embase, MEDLINE, and CINAHL. Thirty-two “descriptive” themes and three superordinate themes were identified. These themes represented how factors relating to identity and relationships are impacted by the diagnosis of autism spectrum disorder and the role of adaptation and assimilation. While the diagnostic process was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the diagnosis process explicitly considers needs in relation to: the impact of the diagnosis on identity, interactions with other people, choices regarding disclosure, and whether and how to make informed adaptations.Lay abstractThere is little research looking at the experience of individuals diagnosed with autism spectrum disorder as adults. Adults diagnosed with autism spectrum disorder face different challenges than children, and more research is needed to better understand those challenges. For this review, autistic and non-autistic researchers looked at research on the experience of receiving a diagnosis of autism spectrum disorder as an adult. We looked for themes in people’s experience leading up to diagnosis, going through the diagnostic process, and living their life after diagnosis. We analyzed 24 studies and found three overarching themes that captured thirty-two themes describing the experience of diagnosis. The three overarching themes expressed issues with identity and relationships before and after the diagnosis and identified that the diagnosis of autism spectrum disorder in adulthood impacted people’s adaptation to and assimilation (i.e. the making sense of and internalizing the diagnosis) of autism spectrum disorder. While the diagnostic process itself was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences and had effects on identity and self-esteem. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the impact of the diagnosis on people’s identity and choices about telling others about their diagnosis, and whether and how people want to make adaptations, should be discussed and thought through in the process of diagnosis.
Autism, Ahead of Print.
There is a dearth of research into the experience of adult diagnosis of autism spectrum disorder, and targeted research is needed to understand the needs of these adults. The aim of this coproduced review was to assess existing qualitative data on the lived experience of receiving an autism spectrum disorder diagnosis, identify recurring themes, and synthesize them into a visual model representing the journey through diagnosis. Using thematic analysis, we analyzed qualitative data from 24 studies of adult experiences of autism spectrum disorder diagnosis from PsycINFO, Embase, MEDLINE, and CINAHL. Thirty-two “descriptive” themes and three superordinate themes were identified. These themes represented how factors relating to identity and relationships are impacted by the diagnosis of autism spectrum disorder and the role of adaptation and assimilation. While the diagnostic process was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the diagnosis process explicitly considers needs in relation to: the impact of the diagnosis on identity, interactions with other people, choices regarding disclosure, and whether and how to make informed adaptations.Lay abstractThere is little research looking at the experience of individuals diagnosed with autism spectrum disorder as adults. Adults diagnosed with autism spectrum disorder face different challenges than children, and more research is needed to better understand those challenges. For this review, autistic and non-autistic researchers looked at research on the experience of receiving a diagnosis of autism spectrum disorder as an adult. We looked for themes in people’s experience leading up to diagnosis, going through the diagnostic process, and living their life after diagnosis. We analyzed 24 studies and found three overarching themes that captured thirty-two themes describing the experience of diagnosis. The three overarching themes expressed issues with identity and relationships before and after the diagnosis and identified that the diagnosis of autism spectrum disorder in adulthood impacted people’s adaptation to and assimilation (i.e. the making sense of and internalizing the diagnosis) of autism spectrum disorder. While the diagnostic process itself was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences and had effects on identity and self-esteem. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the impact of the diagnosis on people’s identity and choices about telling others about their diagnosis, and whether and how people want to make adaptations, should be discussed and thought through in the process of diagnosis.
The Gestalt of functioning in autism revisited: First revision of the International Classification of Functioning, Disability and Health Core Sets
- February 14, 2024
Autism, Ahead of Print.
Functioning is a construct capturing how an individual’s engagement in everyday life emerges from the interaction between the individual and their environment. The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) provides a biopsychosocial framework of functioning. Previously, the ICF was adapted for use in autism by developing Core Sets, a selection of ICF codes from the entire classification for specific conditions. Here, we present the first revision of the ICF of the Core sets for autism from a Delphi-like technique, based on evidence from Core Sets validation/linking studies, stakeholder feedback, and the development and piloting of the autism ICF Core Sets platform. Two ICF second-level codes were removed, and 12 were added to the comprehensive autism Core Set. The added codes reflect body functions in various sensory domains, fine hand use, and environmental factors. Changes were extensive for the age-appropriate brief Core Sets where ICF codes from the initial Core Sets were added or removed. The revisions conducted indicate a continued need for regularly updating Core Sets, based on empirical evidence and stakeholder involvement. We recommend the updated Core Sets for future use in autism research and practice in different age groups and contexts.Lay abstractAutistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people’s situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0–5, 6–16, and ⩾17 years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4 years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders.
Autism, Ahead of Print.
Functioning is a construct capturing how an individual’s engagement in everyday life emerges from the interaction between the individual and their environment. The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) provides a biopsychosocial framework of functioning. Previously, the ICF was adapted for use in autism by developing Core Sets, a selection of ICF codes from the entire classification for specific conditions. Here, we present the first revision of the ICF of the Core sets for autism from a Delphi-like technique, based on evidence from Core Sets validation/linking studies, stakeholder feedback, and the development and piloting of the autism ICF Core Sets platform. Two ICF second-level codes were removed, and 12 were added to the comprehensive autism Core Set. The added codes reflect body functions in various sensory domains, fine hand use, and environmental factors. Changes were extensive for the age-appropriate brief Core Sets where ICF codes from the initial Core Sets were added or removed. The revisions conducted indicate a continued need for regularly updating Core Sets, based on empirical evidence and stakeholder involvement. We recommend the updated Core Sets for future use in autism research and practice in different age groups and contexts.Lay abstractAutistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people’s situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0–5, 6–16, and ⩾17 years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4 years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders.
Evidence-b(i)ased practice: Selective and inadequate reporting in early childhood autism intervention research
- February 12, 2024
Autism, Ahead of Print.
We conducted a multi-pronged investigation of different types of reporting bias in autism early childhood intervention research. First, we investigated the prevalence of reporting failures of completed trials registered on clinicaltrials.gov, and found that only 7% of registered trials were updated with results on the registration platform and only 64% had associated published reports. Next, we investigated the extent to which inadequate reporting prevents inclusion in meta-analytic summary estimates by identifying reports of studies that were eligible for inclusion in a prior meta-analysis, and found that 25% were excluded due to inadequate reporting. Finally, we investigated selective reporting practices by analyzing the protocols of the studies included in the meta-analysis which had been registered on any trial registry and coding their timing, completeness, and consistency. We found that 23% of studies were pre-registered, 71% were late-registered, and 5% were registered at an unclear date. Only 8% of registrations specified all of the necessary components. Evidence of selective reporting was common; 36% failed to report a registered outcome, 61% reported unregistered outcomes, 23% switched primary and secondary outcomes, and 43% had assessment timepoints that differed from registration specification. Given the inadequacy of registration and reporting practices, we offer practical recommendations to facilitate improvement for the field of autism research.Lay AbstractWhen researchers fail to report their findings or only report some of their findings, it can make it difficult for clinicians to provide effective intervention recommendations. However, no one has examined whether this is a problem in studies of early childhood autism interventions. We studied how researchers that study early childhood autism interventions report their findings. We found that most researchers did not register their studies when they were supposed to (before the start of the study), and that many researchers did not provide all of the needed information in the registration. We also found that researchers frequently did not publish their findings when their studies were complete. When we looked at published reports, we found that many of the studies did not report enough information, and that many studies were reported differently from their registrations, suggesting that researchers were selectively reporting positive outcomes and ignoring or misrepresenting less positive outcomes. Because we found so much evidence that researchers are failing to report their findings quickly and correctly, we suggested some practical changes to make it better.
Autism, Ahead of Print.
We conducted a multi-pronged investigation of different types of reporting bias in autism early childhood intervention research. First, we investigated the prevalence of reporting failures of completed trials registered on clinicaltrials.gov, and found that only 7% of registered trials were updated with results on the registration platform and only 64% had associated published reports. Next, we investigated the extent to which inadequate reporting prevents inclusion in meta-analytic summary estimates by identifying reports of studies that were eligible for inclusion in a prior meta-analysis, and found that 25% were excluded due to inadequate reporting. Finally, we investigated selective reporting practices by analyzing the protocols of the studies included in the meta-analysis which had been registered on any trial registry and coding their timing, completeness, and consistency. We found that 23% of studies were pre-registered, 71% were late-registered, and 5% were registered at an unclear date. Only 8% of registrations specified all of the necessary components. Evidence of selective reporting was common; 36% failed to report a registered outcome, 61% reported unregistered outcomes, 23% switched primary and secondary outcomes, and 43% had assessment timepoints that differed from registration specification. Given the inadequacy of registration and reporting practices, we offer practical recommendations to facilitate improvement for the field of autism research.Lay AbstractWhen researchers fail to report their findings or only report some of their findings, it can make it difficult for clinicians to provide effective intervention recommendations. However, no one has examined whether this is a problem in studies of early childhood autism interventions. We studied how researchers that study early childhood autism interventions report their findings. We found that most researchers did not register their studies when they were supposed to (before the start of the study), and that many researchers did not provide all of the needed information in the registration. We also found that researchers frequently did not publish their findings when their studies were complete. When we looked at published reports, we found that many of the studies did not report enough information, and that many studies were reported differently from their registrations, suggesting that researchers were selectively reporting positive outcomes and ignoring or misrepresenting less positive outcomes. Because we found so much evidence that researchers are failing to report their findings quickly and correctly, we suggested some practical changes to make it better.
Suicide risk in transition-aged autistic youth: The link among executive function, depression, and autistic traits
- February 10, 2024
Autism, Ahead of Print.
Autistic individuals are at significantly higher risk of suicide than non-autistic individuals, with transition-aged youth at potentially the highest risk. While lower executive function (EF) skills have been significantly associated with suicide risk in other clinical samples, the link between EF and suicidality has not yet been examined for autistic individuals. In this study, 183 transition-aged autistic youths completed routine suicide risk assessments and self- and informant-reports of autistic traits, depression, and EF skills. On the P4 Suicide Screener, approximately one-third of the sample (33.3%) endorsed having thoughts of hurting themselves with the intent to end their lives (i.e., suicidal ideation) in their lifetime. In addition to depressive symptoms, EF impairment independently predicted endorsement of suicidal ideation, indicating that both are crucial intervention goals to target suicidal risk for transition-aged youth on the spectrum. Findings suggest that executive functioning, a prevalent area of difficulty and common intervention target for the autistic community, is an important indicator of suicide risk in this population.Lay AbstractAutistic people are more likely to consider suicide than non-autistic people, with transition-aged youth (ages 16–21 years) at potentially the highest risk. Research has also shown that difficulties with executive functioning (e.g., difficulties with organization, sequencing, and decision-making) may heighten suicide risk among non-autistic people, but it is not clear whether this is also true for autistic people. This study explored this question by asking 183 transition-aged autistic youth about their experience with suicidal behavior and examining the relationship between their responses and additional measures of depression, autistic traits, and executive function skills. About one-third of autistic transition-aged youth (33.3%) said that they had experienced thoughts of hurting themselves with the intent to end their lives (i.e., suicidal ideation). Both depression and executive function challenges predicted suicide risk (i.e., participants who experienced depression were more likely to have had suicidal thoughts than those who had not, and participants who had more difficulty with executive function skills were more likely to have had suicidal thoughts than those who had less difficulty). These findings suggest that executive functioning, a common area of difficulty among autistic people, is an important indicator of suicide risk in this population.
Autism, Ahead of Print.
Autistic individuals are at significantly higher risk of suicide than non-autistic individuals, with transition-aged youth at potentially the highest risk. While lower executive function (EF) skills have been significantly associated with suicide risk in other clinical samples, the link between EF and suicidality has not yet been examined for autistic individuals. In this study, 183 transition-aged autistic youths completed routine suicide risk assessments and self- and informant-reports of autistic traits, depression, and EF skills. On the P4 Suicide Screener, approximately one-third of the sample (33.3%) endorsed having thoughts of hurting themselves with the intent to end their lives (i.e., suicidal ideation) in their lifetime. In addition to depressive symptoms, EF impairment independently predicted endorsement of suicidal ideation, indicating that both are crucial intervention goals to target suicidal risk for transition-aged youth on the spectrum. Findings suggest that executive functioning, a prevalent area of difficulty and common intervention target for the autistic community, is an important indicator of suicide risk in this population.Lay AbstractAutistic people are more likely to consider suicide than non-autistic people, with transition-aged youth (ages 16–21 years) at potentially the highest risk. Research has also shown that difficulties with executive functioning (e.g., difficulties with organization, sequencing, and decision-making) may heighten suicide risk among non-autistic people, but it is not clear whether this is also true for autistic people. This study explored this question by asking 183 transition-aged autistic youth about their experience with suicidal behavior and examining the relationship between their responses and additional measures of depression, autistic traits, and executive function skills. About one-third of autistic transition-aged youth (33.3%) said that they had experienced thoughts of hurting themselves with the intent to end their lives (i.e., suicidal ideation). Both depression and executive function challenges predicted suicide risk (i.e., participants who experienced depression were more likely to have had suicidal thoughts than those who had not, and participants who had more difficulty with executive function skills were more likely to have had suicidal thoughts than those who had less difficulty). These findings suggest that executive functioning, a common area of difficulty among autistic people, is an important indicator of suicide risk in this population.
Occurrence and predictors of lifetime suicidality and suicidal ideation in autistic adults
- February 10, 2024
Autism, Ahead of Print.
In the past 40 years, accumulating evidence suggested that autistic individuals are at an increased risk of suicidal thoughts and behaviors. This study examined the occurrence of various potential risk factors for lifetime suicidal behavior and suicidal thoughts in the past month in a Dutch cohort (Netherlands Autism Register) of autistic individuals using the Suicidal Behaviors Questionnaire (SBQ-R) and the Suicidal Ideation Attributes Scale (SIDAS). Our results show that the majority (80%) of the initial sample (N = 1164) had thought about or attempted suicide in their lifetime, of which 15% had attempted suicide. In the final sample (n = 421), backward linear regression analyses identified the following predictors for suicidal behavior: psychiatric comorbidity, loneliness, and higher number of autistic traits, F(3, 240) = 21.22, p < 0.001, with R2 of 0.21. For suicidal thoughts in the past month, psychiatric comorbidity and a higher number of autistic traits were significant predictors, F(2, 241) = 20.34, p < 0.001, with R2 of 0.14. In sum, additional risk markers for suicidal thoughts and behaviors in autistic individuals (e.g. number of autistic traits) should be considered when assessing the suicide risk in autistic individuals. Future research should focus on adapting suicide prevention interventions for autistic individuals, such as addressing loneliness as one of the intervention strategies.Lay AbstractOver the past few years, more and more research is showing that many autistic people are at an increased risk for suicide. In this study, we asked participants from the Netherlands Autism Register, which is longitudinal register including individuals with autism, about their possible experiences with thoughts and feelings about suicide. Specifically, we looked at whether these thoughts and feelings in their lifetime and in the past month were related to various factors (such as their age, gender, and having psychiatric disorder diagnoses). We found that 80% of the participants had experienced thoughts about or even attempted to take their own life at least once throughout their lifetime. Furthermore, in a subgroup of participants, we found that the presence of a psychiatric disorder diagnosis, feelings of loneliness, and a higher number of autistic traits were associated with experiencing suicidal thoughts and feelings in their lifetime. For those who experienced these suicidal thoughts in the past month, we found that having (multiple) psychiatric disorder diagnoses and a higher number of autistic traits were related to more severe and frequent thoughts about suicide in the past month. Our findings show that additional factors in autistic individuals should be considered when assessing the suicide risk, and it brings us one step closer to understanding why suicide is more common for autistic people.
Autism, Ahead of Print.
In the past 40 years, accumulating evidence suggested that autistic individuals are at an increased risk of suicidal thoughts and behaviors. This study examined the occurrence of various potential risk factors for lifetime suicidal behavior and suicidal thoughts in the past month in a Dutch cohort (Netherlands Autism Register) of autistic individuals using the Suicidal Behaviors Questionnaire (SBQ-R) and the Suicidal Ideation Attributes Scale (SIDAS). Our results show that the majority (80%) of the initial sample (N = 1164) had thought about or attempted suicide in their lifetime, of which 15% had attempted suicide. In the final sample (n = 421), backward linear regression analyses identified the following predictors for suicidal behavior: psychiatric comorbidity, loneliness, and higher number of autistic traits, F(3, 240) = 21.22, p < 0.001, with R2 of 0.21. For suicidal thoughts in the past month, psychiatric comorbidity and a higher number of autistic traits were significant predictors, F(2, 241) = 20.34, p < 0.001, with R2 of 0.14. In sum, additional risk markers for suicidal thoughts and behaviors in autistic individuals (e.g. number of autistic traits) should be considered when assessing the suicide risk in autistic individuals. Future research should focus on adapting suicide prevention interventions for autistic individuals, such as addressing loneliness as one of the intervention strategies.Lay AbstractOver the past few years, more and more research is showing that many autistic people are at an increased risk for suicide. In this study, we asked participants from the Netherlands Autism Register, which is longitudinal register including individuals with autism, about their possible experiences with thoughts and feelings about suicide. Specifically, we looked at whether these thoughts and feelings in their lifetime and in the past month were related to various factors (such as their age, gender, and having psychiatric disorder diagnoses). We found that 80% of the participants had experienced thoughts about or even attempted to take their own life at least once throughout their lifetime. Furthermore, in a subgroup of participants, we found that the presence of a psychiatric disorder diagnosis, feelings of loneliness, and a higher number of autistic traits were associated with experiencing suicidal thoughts and feelings in their lifetime. For those who experienced these suicidal thoughts in the past month, we found that having (multiple) psychiatric disorder diagnoses and a higher number of autistic traits were related to more severe and frequent thoughts about suicide in the past month. Our findings show that additional factors in autistic individuals should be considered when assessing the suicide risk, and it brings us one step closer to understanding why suicide is more common for autistic people.
‘Who, When, How to Share’: Pilot study of a new disclosure decision-making programme for autistic adults
- February 10, 2024
Autism, Ahead of Print.
In this pilot study, we report on the feasibility, acceptability and potential impact of ‘Who, When, How to Share’, a new disclosure decision-making programme for autistic adults. We evaluated this programme using pre-post mixed-methods surveys that included questions about participants’ experiences of the programme and four psychosocial outcome measures. While 32 autistic adults completed the pre-programme survey and enrolled into the programme, there was high attrition, with only 19 autistic adults completing the programme and post-programme survey. We found that it was feasible to deliver the programme in a guided self-help format, although a minority of participants (who completed the programme or provided reasons for withdrawing from the programme) found it challenging to work through the programme independently and within the study time frame. High levels of satisfaction and positive qualitative feedback also suggested that the programme was acceptable to autistic adults. Participants provided useful recommendations for improvement, such as more interactive elements to enhance engagement. The programme showed potential to improve decisional conflict, disclosure-related distress, stigma-related stress and internalised stigma among autistic adults, though further evaluation of the impact of the programme is needed.Lay abstract‘Who, When, How to Share’ is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further.
Autism, Ahead of Print.
In this pilot study, we report on the feasibility, acceptability and potential impact of ‘Who, When, How to Share’, a new disclosure decision-making programme for autistic adults. We evaluated this programme using pre-post mixed-methods surveys that included questions about participants’ experiences of the programme and four psychosocial outcome measures. While 32 autistic adults completed the pre-programme survey and enrolled into the programme, there was high attrition, with only 19 autistic adults completing the programme and post-programme survey. We found that it was feasible to deliver the programme in a guided self-help format, although a minority of participants (who completed the programme or provided reasons for withdrawing from the programme) found it challenging to work through the programme independently and within the study time frame. High levels of satisfaction and positive qualitative feedback also suggested that the programme was acceptable to autistic adults. Participants provided useful recommendations for improvement, such as more interactive elements to enhance engagement. The programme showed potential to improve decisional conflict, disclosure-related distress, stigma-related stress and internalised stigma among autistic adults, though further evaluation of the impact of the programme is needed.Lay abstract‘Who, When, How to Share’ is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further.
Feasibility of the Autism Navigator® JumpStart to Coaching in Everyday Activities course in South Africa
- February 09, 2024
Autism, Ahead of Print.
In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism. However, resource constraints limit access to quality training in evidence-based interventions. Web-based training may help fill this gap. This study examined the feasibility, acceptability and appropriateness of the web-based Autism Navigator® JumpStart to Coaching in Everyday Activities course for 26 non-profit organisation providers (10 specialists and 16 non-specialists) in South Africa. Quantitative and qualitative methods were used including a post-training survey. Sixteen providers (62%) completed the course over an average period of 5.58 months, with many completing the course during lockdown restrictions, suggesting time as a barrier to course completion. No provider characteristics were related to attrition, nor to the time taken to complete the course. Better English proficiency, higher education levels and more positive attitudes to implementing an evidence-based intervention were associated with the number of attempts needed to pass some learner assessments, and to perceptions of course feasibility, acceptability, and appropriateness. Adaptations in the training delivery (using a group format and local group conference calls) and inclusion of South African video clips were identified as potential facilitators to acceptability and appropriateness.Lay AbstractIn low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism, including in Africa. However, non-profit organisation service providers may not have access to quality training in proven intervention methods. Web-based or online courses may help to meet this need. In this study, we invited a group of specialist (10) and non-specialist (16) non-profit organisation providers in South Africa to complete a web-based course, Autism Navigator® JumpStart to Coaching in Everyday Activities, a 20-h self-paced course that provides training in an evidence-based parent coaching intervention called Early Social Interaction. We evaluated acceptability, appropriateness, and feasibility of the training. Of the 26 who enrolled, 16 completed the course (7 specialists and 9 non-specialists). All providers found it difficult to find time to do the course until the lockdown restrictions due to COVID-19, when most completed the course. Those whose first language was not English experienced more difficulties with two of six learner assessments and those who were not clinical specialists had more difficulty with the coaching strategies learner assessment. Most providers rated the course highly feasible, acceptable, and appropriate stating that the course content was very valuable and helpful in equipping them to serve their families. They felt the extensive video clips and regular meetings with a local trainer helped them engage with and understand the material. They suggested that including South African video clips would make the course more relatable. The fact that the course was web-based was identified as a strong benefit, especially during COVID-19 restrictions.
Autism, Ahead of Print.
In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism. However, resource constraints limit access to quality training in evidence-based interventions. Web-based training may help fill this gap. This study examined the feasibility, acceptability and appropriateness of the web-based Autism Navigator® JumpStart to Coaching in Everyday Activities course for 26 non-profit organisation providers (10 specialists and 16 non-specialists) in South Africa. Quantitative and qualitative methods were used including a post-training survey. Sixteen providers (62%) completed the course over an average period of 5.58 months, with many completing the course during lockdown restrictions, suggesting time as a barrier to course completion. No provider characteristics were related to attrition, nor to the time taken to complete the course. Better English proficiency, higher education levels and more positive attitudes to implementing an evidence-based intervention were associated with the number of attempts needed to pass some learner assessments, and to perceptions of course feasibility, acceptability, and appropriateness. Adaptations in the training delivery (using a group format and local group conference calls) and inclusion of South African video clips were identified as potential facilitators to acceptability and appropriateness.Lay AbstractIn low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism, including in Africa. However, non-profit organisation service providers may not have access to quality training in proven intervention methods. Web-based or online courses may help to meet this need. In this study, we invited a group of specialist (10) and non-specialist (16) non-profit organisation providers in South Africa to complete a web-based course, Autism Navigator® JumpStart to Coaching in Everyday Activities, a 20-h self-paced course that provides training in an evidence-based parent coaching intervention called Early Social Interaction. We evaluated acceptability, appropriateness, and feasibility of the training. Of the 26 who enrolled, 16 completed the course (7 specialists and 9 non-specialists). All providers found it difficult to find time to do the course until the lockdown restrictions due to COVID-19, when most completed the course. Those whose first language was not English experienced more difficulties with two of six learner assessments and those who were not clinical specialists had more difficulty with the coaching strategies learner assessment. Most providers rated the course highly feasible, acceptable, and appropriate stating that the course content was very valuable and helpful in equipping them to serve their families. They felt the extensive video clips and regular meetings with a local trainer helped them engage with and understand the material. They suggested that including South African video clips would make the course more relatable. The fact that the course was web-based was identified as a strong benefit, especially during COVID-19 restrictions.
Do Naturalistic Developmental Behavioral Interventions improve family quality of life? A systematic review and meta-analysis
- February 06, 2024
Autism, Ahead of Print.
Naturalistic Developmental Behavioral Interventions have been described as culturally responsive and family-friendly interventions, with research demonstrating improvements in children’s development when receiving these services. Given the child-directed nature of Naturalistic Developmental Behavioral Interventions and the intervention’s congruence with families’ daily routines, many studies have examined the impact of Naturalistic Developmental Behavioral Interventions on family and family member quality of life. Therefore, we conducted a systematic review and meta-analysis to explore the relationship between Naturalistic Developmental Behavioral Interventions and family quality of life. Results suggest that the receipt of Naturalistic Developmental Behavioral Intervention services neither improved nor worsened family and family member quality of life. For those involved in the provision of Naturalistic Developmental Behavioral Intervention services, there is an immediate need to convey to families that children’s improvements will likely not translate into improvements in family quality of life (osf.io/3ua5f).Lay abstractNaturalistic Developmental Behavioral Interventions have been described as culturally responsive and family-friendly interventions, with research demonstrating improvements in children’s development following the receipt of these interventions. Given the child-directed nature of Naturalistic Developmental Behavioral Interventions and the intervention’s integration within families’ daily routines, many studies have examined the impact of Naturalistic Developmental Behavioral Interventions on family and family member quality of life. We conducted a systematic review and meta-analysis to explore the relationship between Naturalistic Developmental Behavioral Interventions and family quality of life. Results suggest that the provision of a Naturalistic Developmental Behavioral Intervention neither improved nor worsened family or family member quality of life. For those involved in delivering Naturalistic Developmental Behavioral Intervention services, there is an immediate need to convey to families that children’s improvements will likely not translate into improvements in family quality of life.
Autism, Ahead of Print.
Naturalistic Developmental Behavioral Interventions have been described as culturally responsive and family-friendly interventions, with research demonstrating improvements in children’s development when receiving these services. Given the child-directed nature of Naturalistic Developmental Behavioral Interventions and the intervention’s congruence with families’ daily routines, many studies have examined the impact of Naturalistic Developmental Behavioral Interventions on family and family member quality of life. Therefore, we conducted a systematic review and meta-analysis to explore the relationship between Naturalistic Developmental Behavioral Interventions and family quality of life. Results suggest that the receipt of Naturalistic Developmental Behavioral Intervention services neither improved nor worsened family and family member quality of life. For those involved in the provision of Naturalistic Developmental Behavioral Intervention services, there is an immediate need to convey to families that children’s improvements will likely not translate into improvements in family quality of life (osf.io/3ua5f).Lay abstractNaturalistic Developmental Behavioral Interventions have been described as culturally responsive and family-friendly interventions, with research demonstrating improvements in children’s development following the receipt of these interventions. Given the child-directed nature of Naturalistic Developmental Behavioral Interventions and the intervention’s integration within families’ daily routines, many studies have examined the impact of Naturalistic Developmental Behavioral Interventions on family and family member quality of life. We conducted a systematic review and meta-analysis to explore the relationship between Naturalistic Developmental Behavioral Interventions and family quality of life. Results suggest that the provision of a Naturalistic Developmental Behavioral Intervention neither improved nor worsened family or family member quality of life. For those involved in delivering Naturalistic Developmental Behavioral Intervention services, there is an immediate need to convey to families that children’s improvements will likely not translate into improvements in family quality of life.
School participation of autistic youths: The influence of youth, family and school factors
- February 05, 2024
Autism, Ahead of Print.
Many autistic youths experience restricted school participation. The present study investigated the influences of youth, family and school factors on autistic youths’ school participation. Parents of 200 Dutch autistic youths (age range: 4–16 years, Mage = 12.23 years, SDage = 2.93 years) filled in questionnaires in a national survey for autistic individuals, reporting the school participation, age and autistic traits of their child, parents’ education level and self-efficacy for supporting their child’s schoolwork, and the impact of problems their child experienced with the physical and social environments of the school. Multivariate linear regression analysis using imputed data revealed that among the six predictor variables, only the impact of problems autistic youths experienced with the physical environment of school was negatively associated with their school participation. This study provided support for the essential role of the school environment in predicting autistic youths’ school participation, indicating that problematic aspects in the school environment could have a greater impact on autistic youths’ school participation than youth factors or family factors. This highlights the need to create a more accommodating environment at school, where autistic youths can participate easily and comfortably.Lay abstractSchool-aged youths have a basic human right to participate in educational and recreational activities at school. Yet, autistic youths are at high risk of being excluded from school and from school-based activities. It is important to understand how this occurs, to ensure that all autistic youths have opportunities to participate in school activities that are equal to the opportunities of their non-autistic peers. The present study investigated multiple influences on the school participation of autistic youths, including youth factors (age and autistic traits), family factors (parent education level and parental self-efficacy for supporting their child’s schoolwork) and school factors (the impact of problems autistic youths experienced with the physical and social environments of school). Using an online survey, we gathered the views and experiences of the parents of 200 autistic youths aged between 4 and 16 years, in the Netherlands. We found that among the factors, only the impact of problems that autistic youths experienced with the physical environment of school was associated with their school participation. In particular, autistic youths who experienced greater difficulties with the physical environment of school had lower levels of school participation. Our findings highlight the pressing need to modify school environments to better accommodate the needs of autistic youths so that they can participate easily and comfortably.
Autism, Ahead of Print.
Many autistic youths experience restricted school participation. The present study investigated the influences of youth, family and school factors on autistic youths’ school participation. Parents of 200 Dutch autistic youths (age range: 4–16 years, Mage = 12.23 years, SDage = 2.93 years) filled in questionnaires in a national survey for autistic individuals, reporting the school participation, age and autistic traits of their child, parents’ education level and self-efficacy for supporting their child’s schoolwork, and the impact of problems their child experienced with the physical and social environments of the school. Multivariate linear regression analysis using imputed data revealed that among the six predictor variables, only the impact of problems autistic youths experienced with the physical environment of school was negatively associated with their school participation. This study provided support for the essential role of the school environment in predicting autistic youths’ school participation, indicating that problematic aspects in the school environment could have a greater impact on autistic youths’ school participation than youth factors or family factors. This highlights the need to create a more accommodating environment at school, where autistic youths can participate easily and comfortably.Lay abstractSchool-aged youths have a basic human right to participate in educational and recreational activities at school. Yet, autistic youths are at high risk of being excluded from school and from school-based activities. It is important to understand how this occurs, to ensure that all autistic youths have opportunities to participate in school activities that are equal to the opportunities of their non-autistic peers. The present study investigated multiple influences on the school participation of autistic youths, including youth factors (age and autistic traits), family factors (parent education level and parental self-efficacy for supporting their child’s schoolwork) and school factors (the impact of problems autistic youths experienced with the physical and social environments of school). Using an online survey, we gathered the views and experiences of the parents of 200 autistic youths aged between 4 and 16 years, in the Netherlands. We found that among the factors, only the impact of problems that autistic youths experienced with the physical environment of school was associated with their school participation. In particular, autistic youths who experienced greater difficulties with the physical environment of school had lower levels of school participation. Our findings highlight the pressing need to modify school environments to better accommodate the needs of autistic youths so that they can participate easily and comfortably.
Mortality risk among Autistic children and young people: A nationwide birth cohort study
- February 05, 2024
Autism, Ahead of Print.
Autism has been associated with increased mortality risk among adult populations, but little is known about the mortality risk among children and young people (0–24 years). We used a 15-year nationwide birth cohort study using linked health and non-health administrative data to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. Time-to-event analysis was used to determine the association between autism and mortality, controlling for sex, age, ethnicity, deprivation and rurality of residence. The participant population included 895,707 children of whom 11,919 (1.4%) were identified as Autistic. Autism was associated with a significantly higher mortality risk (hazard ratio = 2.35; 95% confidence interval = 1.80–3.06) compared to the general population. In addition, using stratified analyses, we found that this risk was significantly higher among females (hazard ratio = 5.40; 95% confidence interval = 3.42–8.52) compared to males (hazard ratio = 1.82; 95% confidence interval = 1.32–2.52). We also determined that among Autistic young people, mortality risk was significantly higher for those with a co-occurring intellectual disability (hazard ratio = 2.02; 95% confidence interval = 1.17–3.46). In this study, autism was associated with higher mortality in children and young people compared to the non-Autistic population. Increased efforts are required to better meet the health needs of this population.Lay abstractExisting literature indicates that Autistic people have shorter life expectancy, but little is known about the mortality risk among Autistic children and young people (0–24 years). We used a 15-year nationwide birth cohort study to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. The study included 895,707 children and 11,919 (1.4%) were Autistic. We found that autism was associated with a significantly higher mortality risk compared to the non-Autistic population. In addition, we found that this risk was significantly higher among females compared to males and for those with a co-occurring intellectual disability. Increased efforts are required to better meet the health needs of this population.
Autism, Ahead of Print.
Autism has been associated with increased mortality risk among adult populations, but little is known about the mortality risk among children and young people (0–24 years). We used a 15-year nationwide birth cohort study using linked health and non-health administrative data to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. Time-to-event analysis was used to determine the association between autism and mortality, controlling for sex, age, ethnicity, deprivation and rurality of residence. The participant population included 895,707 children of whom 11,919 (1.4%) were identified as Autistic. Autism was associated with a significantly higher mortality risk (hazard ratio = 2.35; 95% confidence interval = 1.80–3.06) compared to the general population. In addition, using stratified analyses, we found that this risk was significantly higher among females (hazard ratio = 5.40; 95% confidence interval = 3.42–8.52) compared to males (hazard ratio = 1.82; 95% confidence interval = 1.32–2.52). We also determined that among Autistic young people, mortality risk was significantly higher for those with a co-occurring intellectual disability (hazard ratio = 2.02; 95% confidence interval = 1.17–3.46). In this study, autism was associated with higher mortality in children and young people compared to the non-Autistic population. Increased efforts are required to better meet the health needs of this population.Lay abstractExisting literature indicates that Autistic people have shorter life expectancy, but little is known about the mortality risk among Autistic children and young people (0–24 years). We used a 15-year nationwide birth cohort study to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. The study included 895,707 children and 11,919 (1.4%) were Autistic. We found that autism was associated with a significantly higher mortality risk compared to the non-Autistic population. In addition, we found that this risk was significantly higher among females compared to males and for those with a co-occurring intellectual disability. Increased efforts are required to better meet the health needs of this population.
What are the autism research priorities of autistic adults in Scotland?
- February 05, 2024
Autism, Ahead of Print.
Studies investigating autistic community research priorities indicate a mismatch between what autism research focuses on and what autistic people want to see researched. Furthermore, there has not been a research priority-setting exercise specifically with autistic people in Scotland, where there are unique cultural, political and social contexts. Using a community-based participatory design, we aimed to identify the research priorities of autistic adults living in Scotland. Autistic and non-autistic researchers designed and conducted a survey where 225 autistic adults rated and ranked research topics in order of importance and provided qualitative feedback on issues and questions important to them. The top five research priorities were mental health/well-being, identification and diagnosis of autistic people, support services, knowledge and attitudes towards autistic people and issues impacting autistic women. There were differences in priorities according to different intersections of identity, and qualitative responses indicated a desire for research to focus on support and understanding. The bottom three priorities concerned genetics, treatments and interventions and causes. These findings emphasise the need to address the gap between what autism research focuses on and the everyday lives of autistic people.Lay abstractAlthough research has the potential to improve autistic people’s lives, lots of funding goes towards research looking at topics which autistic people say has little impact in their everyday lives. Autistic people’s lives can be different depending on where they live, and Scotland is a unique country in many ways. We wanted to find out which topics autistic people in Scotland want to see research on. Our team of autistic and non-autistic researchers (including university-based and community researchers) created a survey where 225 autistic adults rated and ranked the importance of possible research topics and shared their thoughts on what topics mattered to them. The five most important topics were mental health and well-being, identifying and diagnosing autistic people, support services (including healthcare and social care), non-autistic people’s knowledge and attitudes and issues impacting autistic women. The three least important topics were genetics or biological aspects of autism, autism treatments/interventions and causes of autism. Our findings indicate that autistic people in Scotland want research to focus on things that matter to their day-to-day lives. Also, the Scottish government says they will be listening to autistic people in their latest policy plans, and we believe that considering autistic people’s research priorities is an important part of this. Our findings also add to growing calls for change to happen in how and what autism researchers do research on.
Autism, Ahead of Print.
Studies investigating autistic community research priorities indicate a mismatch between what autism research focuses on and what autistic people want to see researched. Furthermore, there has not been a research priority-setting exercise specifically with autistic people in Scotland, where there are unique cultural, political and social contexts. Using a community-based participatory design, we aimed to identify the research priorities of autistic adults living in Scotland. Autistic and non-autistic researchers designed and conducted a survey where 225 autistic adults rated and ranked research topics in order of importance and provided qualitative feedback on issues and questions important to them. The top five research priorities were mental health/well-being, identification and diagnosis of autistic people, support services, knowledge and attitudes towards autistic people and issues impacting autistic women. There were differences in priorities according to different intersections of identity, and qualitative responses indicated a desire for research to focus on support and understanding. The bottom three priorities concerned genetics, treatments and interventions and causes. These findings emphasise the need to address the gap between what autism research focuses on and the everyday lives of autistic people.Lay abstractAlthough research has the potential to improve autistic people’s lives, lots of funding goes towards research looking at topics which autistic people say has little impact in their everyday lives. Autistic people’s lives can be different depending on where they live, and Scotland is a unique country in many ways. We wanted to find out which topics autistic people in Scotland want to see research on. Our team of autistic and non-autistic researchers (including university-based and community researchers) created a survey where 225 autistic adults rated and ranked the importance of possible research topics and shared their thoughts on what topics mattered to them. The five most important topics were mental health and well-being, identifying and diagnosing autistic people, support services (including healthcare and social care), non-autistic people’s knowledge and attitudes and issues impacting autistic women. The three least important topics were genetics or biological aspects of autism, autism treatments/interventions and causes of autism. Our findings indicate that autistic people in Scotland want research to focus on things that matter to their day-to-day lives. Also, the Scottish government says they will be listening to autistic people in their latest policy plans, and we believe that considering autistic people’s research priorities is an important part of this. Our findings also add to growing calls for change to happen in how and what autism researchers do research on.
Psychometric exploration of the RAADS-R with autistic adults: Implications for research and clinical practice
- February 02, 2024
Autism, Ahead of Print.
Several validated adult autism symptom screening tools exist; however, there are concerns about the validity of instruments in adults who self-identify and those who have an autism diagnosis. This study evaluated the psychometric properties of the RAADS-R and RAADS-14 across gender, autism diagnosis and autistic identity, and age among a sample of 839 adults. Participants included individuals who reported a prior diagnosis of autism, self-identified as autistic without a diagnosis, were exploring a diagnosis of autism, or neurotypical. Psychometric evaluation included confirmation of scale factor structure, and examination of item performance, including bias and discrimination, across the target sociodemographic characteristics. The RAADS-R and RAADS-14 were found to be psychometrically sound, unidimensional instruments in the present sample without systematic bias by age, diagnosis/identity, or gender. The use of dichotomous response options would improve measure parsimony. Close examination of extant item-level bias is also recommended in the development of new measures. Notably, few psychometric differences between diagnosed and self-identifying individuals were identified. There was a distinction, however, between diagnosed individuals and those exploring autistic identification. Four items representing the consequences of adverse sensory experiences and the hidden rulebook of social interaction were most informative for differentiating autistic individuals from neurotypical.Lay abstractSurveys used to screen for autism are being used much more by adults. Adults and clinicians want to be confident that the results from their surveys are accurate. If scores are not accurate, it is not possible to compare the scores of different groups of individuals. There are also concerns that these surveys do not accurately identify autistic individuals. This study explored the accuracy of two commonly used autism screening surveys for adults: the RAADS-R and the RAADS-14. The accuracy of these two screening tools was measured using a sample of 839 adults. Adults in the study were in one of the following categories: (1) diagnosed with autism, (2) adults who considered themselves to be autistic but had not been diagnosed, (3) adults who were unsure whether they were autistic, and (4) adults who did not consider themselves to be autistic and had not been diagnosed. The study found that the RAADS-R and the RAADS-14 are accurate. The study also found that a person’s age, gender, autism diagnosis, or whether an individual considered themselves to be autistic did not impact how they understood the survey. Survey accuracy could be improved by changing the number of question responses from four to two. Importantly, individuals with a clinical diagnosis of autism and those who considered themselves to be autistic responded to survey items in a very similar way. Individuals with autism diagnoses and those who were unsure whether they were autistic were more different in their responses. Four specific survey items related to sensory experiences and social interaction identified key differences between autistic and non-autistic adults.
Autism, Ahead of Print.
Several validated adult autism symptom screening tools exist; however, there are concerns about the validity of instruments in adults who self-identify and those who have an autism diagnosis. This study evaluated the psychometric properties of the RAADS-R and RAADS-14 across gender, autism diagnosis and autistic identity, and age among a sample of 839 adults. Participants included individuals who reported a prior diagnosis of autism, self-identified as autistic without a diagnosis, were exploring a diagnosis of autism, or neurotypical. Psychometric evaluation included confirmation of scale factor structure, and examination of item performance, including bias and discrimination, across the target sociodemographic characteristics. The RAADS-R and RAADS-14 were found to be psychometrically sound, unidimensional instruments in the present sample without systematic bias by age, diagnosis/identity, or gender. The use of dichotomous response options would improve measure parsimony. Close examination of extant item-level bias is also recommended in the development of new measures. Notably, few psychometric differences between diagnosed and self-identifying individuals were identified. There was a distinction, however, between diagnosed individuals and those exploring autistic identification. Four items representing the consequences of adverse sensory experiences and the hidden rulebook of social interaction were most informative for differentiating autistic individuals from neurotypical.Lay abstractSurveys used to screen for autism are being used much more by adults. Adults and clinicians want to be confident that the results from their surveys are accurate. If scores are not accurate, it is not possible to compare the scores of different groups of individuals. There are also concerns that these surveys do not accurately identify autistic individuals. This study explored the accuracy of two commonly used autism screening surveys for adults: the RAADS-R and the RAADS-14. The accuracy of these two screening tools was measured using a sample of 839 adults. Adults in the study were in one of the following categories: (1) diagnosed with autism, (2) adults who considered themselves to be autistic but had not been diagnosed, (3) adults who were unsure whether they were autistic, and (4) adults who did not consider themselves to be autistic and had not been diagnosed. The study found that the RAADS-R and the RAADS-14 are accurate. The study also found that a person’s age, gender, autism diagnosis, or whether an individual considered themselves to be autistic did not impact how they understood the survey. Survey accuracy could be improved by changing the number of question responses from four to two. Importantly, individuals with a clinical diagnosis of autism and those who considered themselves to be autistic responded to survey items in a very similar way. Individuals with autism diagnoses and those who were unsure whether they were autistic were more different in their responses. Four specific survey items related to sensory experiences and social interaction identified key differences between autistic and non-autistic adults.
The characterization of feeding challenges in autistic children
- February 02, 2024
Autism, Ahead of Print.
Feeding challenges are a significant concern for autistic children. Literature has yet to comprehensively characterize feeding challenges for autistic children. Further research is needed to understand predictors of feeding severity and identify opportunities for screening and intervention. The purpose of this study was to characterize the presentation of feeding challenges in autistic children and identify predictors of feeding challenge classification and severity. Data from a national cross-sectional survey of caregivers (n = 427) of autistic children with feeding challenges was used. Feeding challenges were characterized using descriptive statistics. Autism diagnosis age and age of onset of feeding challenges was compared using non-parametric testing. Bi-directional stepwise multivariate linear regression was used to identify significant predictors of feeding challenge scores. Sensory-based feeding challenges were the most common. Age of onset of feeding challenges was significantly lower than the age of autism diagnosis. Early feeding challenges differentially predicted feeding challenge severity and classification scores. The results of this study identify the relationships among early feeding challenges and the severity and classification of feeding challenges in later childhood. Results demonstrate the importance of early monitoring of feeding challenges. These findings can be used to inform the identification of critical timepoints for intervention.Lay abstractFeeding challenges are common for autistic children. Currently, research and intervention for feeding challenges focuses on single factors (e.g. behavior or sensory). Research is needed to understand the complexity of feeding challenges. This study provides a comprehensive description of feeding challenges. Furthermore, this study identifies what factors predict the severity and type of feeding challenges experienced by autistic children. Using the Survey for Characterization of Feeding Challenges in Autistic Children—United States, 427 caregivers of autistic children provided information about their child’s feeding challenges. Children were between the ages of 2 and 12 with an average age of 8.42 years. Children in the study had a wide variety of feeding difficulties including challenges in early childhood, sensory challenges, difficulty with family mealtime, and variable self-help skills. On average children’s feeding challenges were present prior to their autism diagnosis. We found that children who had early feeding challenges had more severe feeding challenges in later childhood. Also, specific early feeding challenges predicted the types of feeding challenges children would have later in childhood. For example, children who had difficulty transitioning to table foods and who continued to restrict their diet over time were more likely to have sensory-based feeding challenges. Results from this study show how feeding challenges present in a wide variety of ways for autistic children. The findings also highlight the importance of screening for feeding challenges in early childhood and collaborating with families to understand individualized feeding challenge experiences. These results could be used to inform evaluation and intervention for feeding.
Autism, Ahead of Print.
Feeding challenges are a significant concern for autistic children. Literature has yet to comprehensively characterize feeding challenges for autistic children. Further research is needed to understand predictors of feeding severity and identify opportunities for screening and intervention. The purpose of this study was to characterize the presentation of feeding challenges in autistic children and identify predictors of feeding challenge classification and severity. Data from a national cross-sectional survey of caregivers (n = 427) of autistic children with feeding challenges was used. Feeding challenges were characterized using descriptive statistics. Autism diagnosis age and age of onset of feeding challenges was compared using non-parametric testing. Bi-directional stepwise multivariate linear regression was used to identify significant predictors of feeding challenge scores. Sensory-based feeding challenges were the most common. Age of onset of feeding challenges was significantly lower than the age of autism diagnosis. Early feeding challenges differentially predicted feeding challenge severity and classification scores. The results of this study identify the relationships among early feeding challenges and the severity and classification of feeding challenges in later childhood. Results demonstrate the importance of early monitoring of feeding challenges. These findings can be used to inform the identification of critical timepoints for intervention.Lay abstractFeeding challenges are common for autistic children. Currently, research and intervention for feeding challenges focuses on single factors (e.g. behavior or sensory). Research is needed to understand the complexity of feeding challenges. This study provides a comprehensive description of feeding challenges. Furthermore, this study identifies what factors predict the severity and type of feeding challenges experienced by autistic children. Using the Survey for Characterization of Feeding Challenges in Autistic Children—United States, 427 caregivers of autistic children provided information about their child’s feeding challenges. Children were between the ages of 2 and 12 with an average age of 8.42 years. Children in the study had a wide variety of feeding difficulties including challenges in early childhood, sensory challenges, difficulty with family mealtime, and variable self-help skills. On average children’s feeding challenges were present prior to their autism diagnosis. We found that children who had early feeding challenges had more severe feeding challenges in later childhood. Also, specific early feeding challenges predicted the types of feeding challenges children would have later in childhood. For example, children who had difficulty transitioning to table foods and who continued to restrict their diet over time were more likely to have sensory-based feeding challenges. Results from this study show how feeding challenges present in a wide variety of ways for autistic children. The findings also highlight the importance of screening for feeding challenges in early childhood and collaborating with families to understand individualized feeding challenge experiences. These results could be used to inform evaluation and intervention for feeding.
Factors mediating pre-existing autism diagnosis and later suicidal thoughts and behaviors: A follow-up cohort study
- January 30, 2024
Autism, Ahead of Print.
Individuals diagnosed with autism spectrum disorder (ASD) are more likely to have suicidal thoughts and behaviors. However, little research delineates the temporal and mechanistic associations between potential risk factors and suicidality in autistic individuals. We assessed 129 autistic and 121 age-matched and sex-assigned-at-birth-matched typically developing (TD) children and youth at baseline and follow-up. We evaluated internalizing/externalizing problems, bullying experiences, and three executive function tasks at a mean baseline age of 13.4 years (standard deviation: 4.2 years). After an average of 5.8 years (standard deviation: 1.7 years), we evaluated their suicidal thoughts and behaviors. The experiences of being bullied partially mediated the temporal relationship between pre-existing ASD and later-reported suicidal thoughts. Several cognitive flexibility and sustained attention indices mediated the temporal relationship between pre-existing ASD and later-reported suicidal thoughts. A multiple mediation model confirmed that bullying victimization and cognitive flexibility jointly mediated the temporal relationship between ASD and suicidal thoughts. Better cognitive flexibility and experiences of bullying victimization in autistic children/youth were both associated with higher risks of later-reported suicidal thoughts in adolescence/adulthood. School bullying-prevention programs and tailored clinical support for autistic youth with better cognitive flexibility are warranted for personalized suicide prevention for the autistic population.Lay AbstractAutistic people are more likely to experience suicidal thoughts and behaviors. The underlying relationships between potential risk factors and suicidal thoughts and behaviors in autistic individuals remain unclear. To understand this, we investigated whether specific factors in childhood/youth explain the effects of pre-existing autism spectrum disorder (ASD) diagnoses on later suicidal thoughts and behaviors in adolescence/adulthood. We assessed internalizing and externalizing problems, bullying experiences, and executive functions (including cognitive flexibility, sustained attention, and spatial working memory) at an average baseline age of 13.4 years and suicidal thoughts and behaviors at an average follow-up age of 19.2 years among 129 autistic and 121 typically developing (TD) individuals. During the follow-up period in adolescence/adulthood, autistic individuals were more likely to report suicidal thoughts than TD individuals. Being bullied partially accounted for the relationship between a pre-existing ASD diagnosis and later-reported higher suicidal thoughts. Contrary to our hypothesis, higher (instead of lower) cognitive flexibility in some autistic young people appeared to partially explain their higher rates of suicidal thoughts compared with typically developing young people. The findings imply that school bullying prevention and tailored intervention programs for autistic people, especially those with higher cognitive flexibility, are warranted to reduce their risks of experiencing suicidal thoughts.
Autism, Ahead of Print.
Individuals diagnosed with autism spectrum disorder (ASD) are more likely to have suicidal thoughts and behaviors. However, little research delineates the temporal and mechanistic associations between potential risk factors and suicidality in autistic individuals. We assessed 129 autistic and 121 age-matched and sex-assigned-at-birth-matched typically developing (TD) children and youth at baseline and follow-up. We evaluated internalizing/externalizing problems, bullying experiences, and three executive function tasks at a mean baseline age of 13.4 years (standard deviation: 4.2 years). After an average of 5.8 years (standard deviation: 1.7 years), we evaluated their suicidal thoughts and behaviors. The experiences of being bullied partially mediated the temporal relationship between pre-existing ASD and later-reported suicidal thoughts. Several cognitive flexibility and sustained attention indices mediated the temporal relationship between pre-existing ASD and later-reported suicidal thoughts. A multiple mediation model confirmed that bullying victimization and cognitive flexibility jointly mediated the temporal relationship between ASD and suicidal thoughts. Better cognitive flexibility and experiences of bullying victimization in autistic children/youth were both associated with higher risks of later-reported suicidal thoughts in adolescence/adulthood. School bullying-prevention programs and tailored clinical support for autistic youth with better cognitive flexibility are warranted for personalized suicide prevention for the autistic population.Lay AbstractAutistic people are more likely to experience suicidal thoughts and behaviors. The underlying relationships between potential risk factors and suicidal thoughts and behaviors in autistic individuals remain unclear. To understand this, we investigated whether specific factors in childhood/youth explain the effects of pre-existing autism spectrum disorder (ASD) diagnoses on later suicidal thoughts and behaviors in adolescence/adulthood. We assessed internalizing and externalizing problems, bullying experiences, and executive functions (including cognitive flexibility, sustained attention, and spatial working memory) at an average baseline age of 13.4 years and suicidal thoughts and behaviors at an average follow-up age of 19.2 years among 129 autistic and 121 typically developing (TD) individuals. During the follow-up period in adolescence/adulthood, autistic individuals were more likely to report suicidal thoughts than TD individuals. Being bullied partially accounted for the relationship between a pre-existing ASD diagnosis and later-reported higher suicidal thoughts. Contrary to our hypothesis, higher (instead of lower) cognitive flexibility in some autistic young people appeared to partially explain their higher rates of suicidal thoughts compared with typically developing young people. The findings imply that school bullying prevention and tailored intervention programs for autistic people, especially those with higher cognitive flexibility, are warranted to reduce their risks of experiencing suicidal thoughts.
Examining the associations among knowledge, empowerment, and advocacy among parents of transition-aged youth with autism
- January 25, 2024
Autism, Ahead of Print.
Parents of individuals with autism face many challenges in accessing appropriate services and supports for their offspring. Parents also play vital roles in advocating for their offspring’s rights and needs. Furthermore, despite advocacy programs becoming increasingly common, it remains unclear how to best foster advocacy among parents of individuals with autism. To this end, we examined the associations among knowledge, empowerment, and three types of advocacy activities (i.e. individual, peer, and systemic) among 185 parents of transition-aged youth with autism using structural equation modeling. Results show that empowerment has a greater impact on advocacy than knowledge. Significant direct and indirect effects of individual advocacy activities on peer advocacy activities, and peer advocacy activities on systemic advocacy activities were also confirmed. Implications for research and practice are discussed.Lay abstractParents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children’s rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents’ knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism.
Autism, Ahead of Print.
Parents of individuals with autism face many challenges in accessing appropriate services and supports for their offspring. Parents also play vital roles in advocating for their offspring’s rights and needs. Furthermore, despite advocacy programs becoming increasingly common, it remains unclear how to best foster advocacy among parents of individuals with autism. To this end, we examined the associations among knowledge, empowerment, and three types of advocacy activities (i.e. individual, peer, and systemic) among 185 parents of transition-aged youth with autism using structural equation modeling. Results show that empowerment has a greater impact on advocacy than knowledge. Significant direct and indirect effects of individual advocacy activities on peer advocacy activities, and peer advocacy activities on systemic advocacy activities were also confirmed. Implications for research and practice are discussed.Lay abstractParents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children’s rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents’ knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism.
Atypical pattern separation memory and its association with restricted interests and repetitive behaviors in autistic children
- January 24, 2024
Autism, Ahead of Print.
Emerging research suggests that episodic memory challenges are commonly encountered by autistic individuals; however, the specific nature of these memory challenges remains elusive. Here, we address critical gaps in the literature by examining pattern separation memory, the ability to store distinct memories of similar stimuli, and its links to the core autistic trait of repetitive, restricted interests and behaviors. Utilizing a large sample of over 120 autistic children and well-matched non-autistic peers, we found that autistic children showed significantly reduced performance on pattern separation memory. A clustering analysis identified three distinct pattern separation memory profiles in autism, each characterized by reduced or increased generalization abilities. Importantly, pattern separation memory was negatively correlated with the severity of repetitive, restricted interest and behavior symptoms in autism. These findings offer new evidence for challenges in pattern separation memory in autism and emphasize the need to consider these challenges when assessing and supporting autistic individuals in educational and clinical settings.Lay abstractMemory challenges remain understudied in childhood autism. Our study investigates one specific aspect of memory function, known as pattern separation memory, in autistic children. Pattern separation memory refers to the critical ability to store unique memories of similar stimuli; however, its role in childhood autism remains largely uncharted. Our study first uncovered that the pattern separation memory was significantly reduced in autistic children, and then showed that reduced memory performance was linked to their symptoms of repetitive, restricted interest and behavior. We also identified distinct subgroups with profiles of reduced and increased generalization for pattern separation memory. More than 72% of autistic children showed a tendency to reduce memory generalization, focusing heavily on unique details of objects for memorization. This focus made it challenging for them to identify commonalities across similar entities. Interestingly, a smaller proportion of autistic children displayed an opposite pattern of increased generalization, marked by challenges in differentiating between similar yet distinct objects. Our findings advance the understanding of memory function in autism and have practical implications for devising personalized learning strategies that align with the unique memory patterns exhibited by autistic children. This study will be of broad interest to researchers in psychology, psychiatry, and brain development as well as teachers, parents, clinicians, and the wider public.
Autism, Ahead of Print.
Emerging research suggests that episodic memory challenges are commonly encountered by autistic individuals; however, the specific nature of these memory challenges remains elusive. Here, we address critical gaps in the literature by examining pattern separation memory, the ability to store distinct memories of similar stimuli, and its links to the core autistic trait of repetitive, restricted interests and behaviors. Utilizing a large sample of over 120 autistic children and well-matched non-autistic peers, we found that autistic children showed significantly reduced performance on pattern separation memory. A clustering analysis identified three distinct pattern separation memory profiles in autism, each characterized by reduced or increased generalization abilities. Importantly, pattern separation memory was negatively correlated with the severity of repetitive, restricted interest and behavior symptoms in autism. These findings offer new evidence for challenges in pattern separation memory in autism and emphasize the need to consider these challenges when assessing and supporting autistic individuals in educational and clinical settings.Lay abstractMemory challenges remain understudied in childhood autism. Our study investigates one specific aspect of memory function, known as pattern separation memory, in autistic children. Pattern separation memory refers to the critical ability to store unique memories of similar stimuli; however, its role in childhood autism remains largely uncharted. Our study first uncovered that the pattern separation memory was significantly reduced in autistic children, and then showed that reduced memory performance was linked to their symptoms of repetitive, restricted interest and behavior. We also identified distinct subgroups with profiles of reduced and increased generalization for pattern separation memory. More than 72% of autistic children showed a tendency to reduce memory generalization, focusing heavily on unique details of objects for memorization. This focus made it challenging for them to identify commonalities across similar entities. Interestingly, a smaller proportion of autistic children displayed an opposite pattern of increased generalization, marked by challenges in differentiating between similar yet distinct objects. Our findings advance the understanding of memory function in autism and have practical implications for devising personalized learning strategies that align with the unique memory patterns exhibited by autistic children. This study will be of broad interest to researchers in psychology, psychiatry, and brain development as well as teachers, parents, clinicians, and the wider public.
Employment profiles of autistic people: An 8-year longitudinal study
- January 20, 2024
Autism, Ahead of Print.
Autistic adults experience high rates of unemployment, yet research investigating what predicts employment success produces inconsistent results. By utilising longitudinal person-oriented analyses, this study aimed to identify employment trajectories of autistic adults to better understand what may predict stable autistic employment. Participants were 2449 autistic adults (1077 men, 1352 women, 20 non-binary, M = 42.25 years, SD = 14.24), recruited via the Netherlands Autism Register. Latent class analysis utilising employment status across eight annual waves was used to identify longitudinal employment profiles. Fit indices and the interpretability of results indicated a four-class model best fit the data, with profiles reflecting stable unemployment (n = 1189), stable employment (n = 801), early unemployment increasing in probability of employment (n = 183) and high probability of employment reducing across time to low employment (n = 134). Multinominal analyses suggested that compared to the ‘stable unemployment’ group, membership in the ‘stable employment’ profile was predicted by fewer autistic traits, lower age, male gender, higher education and diagnosis age, and fewer co-occurring conditions. Higher education predicted both other profiles, with lower age and fewer co-occurring conditions predicting membership in the increasing employment class. Taken together, findings highlight the utility of person-oriented approaches in understanding the longitudinal challenges autistic adults experience maintaining employment and identifies key areas of support.Lay abstractAutistic adults experience difficulties finding and keeping employment. However, research investigating reasons that might explain this difficulty produce mixed results. We gave a survey to 2449 autistic adults and used a statistic method to group them based on their employment status over 8 years. We identified four employment groups that best captured the experiences of autistic adults; this included a group that experienced stable unemployment, a group that experienced stable employment, a group that had high employment that reduced over time, and a group whose employment increased over the 8 years. Further analysis showed that those with fewer autistic traits, younger age, male gender, higher education, later diagnosis age and no co-occurring conditions were more likely to have stable employment. People whose employment changed over time were more likely to have a higher level of education than the stable unemployment group, and those in the increasing employment group were younger age and had no co-occurring conditions. These findings help us better understand that not all autistic adults’ experiences of employment are the same, which helps focus where employment programmes and support may be most needed, for example, people who identify as women or have a co-occurring condition.
Autism, Ahead of Print.
Autistic adults experience high rates of unemployment, yet research investigating what predicts employment success produces inconsistent results. By utilising longitudinal person-oriented analyses, this study aimed to identify employment trajectories of autistic adults to better understand what may predict stable autistic employment. Participants were 2449 autistic adults (1077 men, 1352 women, 20 non-binary, M = 42.25 years, SD = 14.24), recruited via the Netherlands Autism Register. Latent class analysis utilising employment status across eight annual waves was used to identify longitudinal employment profiles. Fit indices and the interpretability of results indicated a four-class model best fit the data, with profiles reflecting stable unemployment (n = 1189), stable employment (n = 801), early unemployment increasing in probability of employment (n = 183) and high probability of employment reducing across time to low employment (n = 134). Multinominal analyses suggested that compared to the ‘stable unemployment’ group, membership in the ‘stable employment’ profile was predicted by fewer autistic traits, lower age, male gender, higher education and diagnosis age, and fewer co-occurring conditions. Higher education predicted both other profiles, with lower age and fewer co-occurring conditions predicting membership in the increasing employment class. Taken together, findings highlight the utility of person-oriented approaches in understanding the longitudinal challenges autistic adults experience maintaining employment and identifies key areas of support.Lay abstractAutistic adults experience difficulties finding and keeping employment. However, research investigating reasons that might explain this difficulty produce mixed results. We gave a survey to 2449 autistic adults and used a statistic method to group them based on their employment status over 8 years. We identified four employment groups that best captured the experiences of autistic adults; this included a group that experienced stable unemployment, a group that experienced stable employment, a group that had high employment that reduced over time, and a group whose employment increased over the 8 years. Further analysis showed that those with fewer autistic traits, younger age, male gender, higher education, later diagnosis age and no co-occurring conditions were more likely to have stable employment. People whose employment changed over time were more likely to have a higher level of education than the stable unemployment group, and those in the increasing employment group were younger age and had no co-occurring conditions. These findings help us better understand that not all autistic adults’ experiences of employment are the same, which helps focus where employment programmes and support may be most needed, for example, people who identify as women or have a co-occurring condition.
Remembering the future; prospective memory across the autistic adult’s life span
- January 19, 2024
Autism, Ahead of Print.
Prospective memory helps us to remember to perform tasks in the future. Prospective memory can be either time or event based. The goal of this study was to determine time- and event-based prospective memory in autistic adults across the life span. Autistic (n = 82) and non-autistic (n = 111) adults, aged between 30 and 86 years, performed the lab-based Amsterdam Breakfast Task, and several naturalistic prospective memory tasks. Preregistered analyses (AsPredicted #34249) were performed using classical frequentist as well as Bayesian statistics. On none of the prospective memory tasks, group differences were observed. Our results show no effect of age on naturalistic tasks, but age did affect our lab-based measure, indicative of the age paradox often described in non-autistic adults. Moreover, we found evidence for a parallel age-related effect of lab-based and naturalistic prospective memory in autistic and non-autistic individuals.Lay abstractWhat is already known: Prospective memory is an important function for daily living. It is the cognitive function that helps you remember that you are meeting your friend for coffee at 2 pm tomorrow, or that you need to take your vitamins after breakfast. This cognitive function is particularly important in autistic adults, but how prospective memory is associated with increasing age, we currently do not know.What this paper adds: Although performance on experimental tasks that measure prospective memory decreases with age, this pattern is similar in autistic and non-autistic adults. No age effects were found for tasks that were performed outside the lab. Autistic adults and non-autistic adults perform similarly on prospective memory, and this performance remains similar when autistic and non-autistic adults age.Implications for practice, research, or policy: While our results show that prospective memory decreased with increasing age, our results do point to parallel development of prospective memory in autistic and non-autistic adults. This finding serves as a reassurance for those individuals concerned that older autistic individuals might show quicker cognitive decline.
Autism, Ahead of Print.
Prospective memory helps us to remember to perform tasks in the future. Prospective memory can be either time or event based. The goal of this study was to determine time- and event-based prospective memory in autistic adults across the life span. Autistic (n = 82) and non-autistic (n = 111) adults, aged between 30 and 86 years, performed the lab-based Amsterdam Breakfast Task, and several naturalistic prospective memory tasks. Preregistered analyses (AsPredicted #34249) were performed using classical frequentist as well as Bayesian statistics. On none of the prospective memory tasks, group differences were observed. Our results show no effect of age on naturalistic tasks, but age did affect our lab-based measure, indicative of the age paradox often described in non-autistic adults. Moreover, we found evidence for a parallel age-related effect of lab-based and naturalistic prospective memory in autistic and non-autistic individuals.Lay abstractWhat is already known: Prospective memory is an important function for daily living. It is the cognitive function that helps you remember that you are meeting your friend for coffee at 2 pm tomorrow, or that you need to take your vitamins after breakfast. This cognitive function is particularly important in autistic adults, but how prospective memory is associated with increasing age, we currently do not know.What this paper adds: Although performance on experimental tasks that measure prospective memory decreases with age, this pattern is similar in autistic and non-autistic adults. No age effects were found for tasks that were performed outside the lab. Autistic adults and non-autistic adults perform similarly on prospective memory, and this performance remains similar when autistic and non-autistic adults age.Implications for practice, research, or policy: While our results show that prospective memory decreased with increasing age, our results do point to parallel development of prospective memory in autistic and non-autistic adults. This finding serves as a reassurance for those individuals concerned that older autistic individuals might show quicker cognitive decline.
Everyday executive function issues from the perspectives of autistic adolescents and their parents: Theoretical and empirical implications
- January 19, 2024
Autism, Ahead of Print.
There is a long tradition of research into autistic people’s executive function skills. Yet, despite decades of research on EF in autism, the existing literature remains contradictory and ‘confusing’, with a large – and unresolved – discrepancy between small-to-moderate effect sizes demonstrated on laboratory-based EF tasks and large effect sizes on questionnaire-based everyday EF measures. We sought to understand this mismatch between ‘lab and life’ by inviting 12 autistic adolescents (12–19 years) and their mothers (n = 7) to convey their views and perspectives about their own, or their child’s, EF skills as they transition to adulthood. We followed Braun and Clarke’s method for reflexive thematic analysis using an inductive approach. Participants told us that their EF skills were highly variable, acutely dependent on the context in which they were deployed and potentially related to differences in the way that they process information more broadly. Participants’ reports provided rare insights into their and their children’s executive control – insights that do not straightforwardly map onto traditional theoretical models of EF. Future work on EF needs to take seriously the perspectives and subjectivity of autistic people themselves, including by triangulating quantitative, objective assessments with qualitative, subjective reports in complementary (controlled, uncontrolled) settings.Lay abstractAutism researchers have a long-time interest in a set of skills called executive function. These skills include planning, inhibition, and switching between one activity and another. There was a theory that these skills explained the social and thinking difficulties autistic people might have. After years of study into this, the evidence is confusing and contradictory. Autistic people tend to report struggling quite a lot with these skills. Yet, when researchers test these skills, they do not tend to find such big difficulties. In this study, we spoke to 12 autistic teenagers and seven of their mothers about this. We asked them what they thought about their own, or their child’s, executive function skills. We wanted to know about things they were good at and things they struggled with. They told us that their skills were very changeable from one context to the next and from one time to the next. According to their reports, their skills depended on how motivated they were by doing the task. Another thing that influenced their skills were how anxious they felt at the time they needed to use the skill. Finally, they told us that sometimes they think differently about how best to perform a task. We discuss what these insights mean for autism researchers who study these skills. In future, research should ask people about their experiences alongside testing their abilities in different contexts. Combining these information sources will give us a better understanding of autistic people’s everyday skills as well as how best to support them.
Autism, Ahead of Print.
There is a long tradition of research into autistic people’s executive function skills. Yet, despite decades of research on EF in autism, the existing literature remains contradictory and ‘confusing’, with a large – and unresolved – discrepancy between small-to-moderate effect sizes demonstrated on laboratory-based EF tasks and large effect sizes on questionnaire-based everyday EF measures. We sought to understand this mismatch between ‘lab and life’ by inviting 12 autistic adolescents (12–19 years) and their mothers (n = 7) to convey their views and perspectives about their own, or their child’s, EF skills as they transition to adulthood. We followed Braun and Clarke’s method for reflexive thematic analysis using an inductive approach. Participants told us that their EF skills were highly variable, acutely dependent on the context in which they were deployed and potentially related to differences in the way that they process information more broadly. Participants’ reports provided rare insights into their and their children’s executive control – insights that do not straightforwardly map onto traditional theoretical models of EF. Future work on EF needs to take seriously the perspectives and subjectivity of autistic people themselves, including by triangulating quantitative, objective assessments with qualitative, subjective reports in complementary (controlled, uncontrolled) settings.Lay abstractAutism researchers have a long-time interest in a set of skills called executive function. These skills include planning, inhibition, and switching between one activity and another. There was a theory that these skills explained the social and thinking difficulties autistic people might have. After years of study into this, the evidence is confusing and contradictory. Autistic people tend to report struggling quite a lot with these skills. Yet, when researchers test these skills, they do not tend to find such big difficulties. In this study, we spoke to 12 autistic teenagers and seven of their mothers about this. We asked them what they thought about their own, or their child’s, executive function skills. We wanted to know about things they were good at and things they struggled with. They told us that their skills were very changeable from one context to the next and from one time to the next. According to their reports, their skills depended on how motivated they were by doing the task. Another thing that influenced their skills were how anxious they felt at the time they needed to use the skill. Finally, they told us that sometimes they think differently about how best to perform a task. We discuss what these insights mean for autism researchers who study these skills. In future, research should ask people about their experiences alongside testing their abilities in different contexts. Combining these information sources will give us a better understanding of autistic people’s everyday skills as well as how best to support them.
No association between alexithymia and emotion recognition or theory of mind in a sample of adolescents enhanced for autistic traits
- January 19, 2024
Autism, Ahead of Print.
The alexithymia hypothesis posits that specific aspects of the autistic socio-cognitive profile, namely emotion recognition difficulties, can be explained by the increased prevalence of alexithymia in autistic populations. However, this hypothesis has largely been tested in adults. We tested whether co-occurring alexithymia could account for associations between autistic traits and two key domains of socio-emotional cognitive functioning in adolescence. Participants were 184 (44% male) children aged 10–16 years with and without a diagnosis of autism (n = 75 autistic), who completed experimental measures of emotion recognition and theory of mind. Parents completed assessment of autistic traits and alexithymia. Pre-registered analyses tested associations between autistic traits and socio-cognitive task performance, and whether including alexithymia as an additional predictor changed the nature of the association between autistic traits and task performance. Results showed participants with higher levels of autistic traits performed lower on emotion recognition and theory of mind tasks, and that these associations were not significantly altered by including alexithymia in the models. Results suggest that more work is needed to understand the applicability of the alexithymia hypothesis in younger populations, but that at least in young adolescents and when using parent-report measures, alexithymia may not be associated with emotion recognition or theory of mind ability.Lay abstractAlexithymia is a sub-clinical condition characterised by difficulties identifying and describing one’s own emotions, which is found in many, but not all autistic people. The alexithymia hypothesis suggests that certain aspects of socio-cognitive functioning typically attributed to autism, namely difficulties in emotion recognition, might be better explained by often co-occurring alexithymia. It is important to understand what is specific to autism and what is due to other co-occurring characteristics to develop appropriate support for autistic people. However, most research on this topic has been conducted in adults, which limits our knowledge about the relevance of this theory to younger autistic populations. This study tested whether difficulties in emotion recognition and theory of mind traditionally associated with autism might be better explained by alexithymia in a sample of adolescents with and without a diagnosis of autism. Results found that difficulties in emotion recognition and theory of mind were both associated with autistic traits, and this was not accounted for by individual differences in levels of alexithymia. This research suggests that more work is needed to understand the applicability of the alexithymia hypothesis in younger populations, but that at least in adolescents and when using parent-report measures, alexithymia may not account for emotion recognition or theory of mind difficulties associated with autistic traits.
Autism, Ahead of Print.
The alexithymia hypothesis posits that specific aspects of the autistic socio-cognitive profile, namely emotion recognition difficulties, can be explained by the increased prevalence of alexithymia in autistic populations. However, this hypothesis has largely been tested in adults. We tested whether co-occurring alexithymia could account for associations between autistic traits and two key domains of socio-emotional cognitive functioning in adolescence. Participants were 184 (44% male) children aged 10–16 years with and without a diagnosis of autism (n = 75 autistic), who completed experimental measures of emotion recognition and theory of mind. Parents completed assessment of autistic traits and alexithymia. Pre-registered analyses tested associations between autistic traits and socio-cognitive task performance, and whether including alexithymia as an additional predictor changed the nature of the association between autistic traits and task performance. Results showed participants with higher levels of autistic traits performed lower on emotion recognition and theory of mind tasks, and that these associations were not significantly altered by including alexithymia in the models. Results suggest that more work is needed to understand the applicability of the alexithymia hypothesis in younger populations, but that at least in young adolescents and when using parent-report measures, alexithymia may not be associated with emotion recognition or theory of mind ability.Lay abstractAlexithymia is a sub-clinical condition characterised by difficulties identifying and describing one’s own emotions, which is found in many, but not all autistic people. The alexithymia hypothesis suggests that certain aspects of socio-cognitive functioning typically attributed to autism, namely difficulties in emotion recognition, might be better explained by often co-occurring alexithymia. It is important to understand what is specific to autism and what is due to other co-occurring characteristics to develop appropriate support for autistic people. However, most research on this topic has been conducted in adults, which limits our knowledge about the relevance of this theory to younger autistic populations. This study tested whether difficulties in emotion recognition and theory of mind traditionally associated with autism might be better explained by alexithymia in a sample of adolescents with and without a diagnosis of autism. Results found that difficulties in emotion recognition and theory of mind were both associated with autistic traits, and this was not accounted for by individual differences in levels of alexithymia. This research suggests that more work is needed to understand the applicability of the alexithymia hypothesis in younger populations, but that at least in adolescents and when using parent-report measures, alexithymia may not account for emotion recognition or theory of mind difficulties associated with autistic traits.
Short report: Transition to International Classification of Diseases, 10th Revision and the prevalence of autism in a cohort of healthcare systems
- January 19, 2024
Autism, Ahead of Print.
Currently, the prevalence of autism spectrum disorder (henceforth “autism”) is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15 months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding.Lay abstractCurrently, the prevalence of autism spectrum disorder (henceforth “autism”) is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15 months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding.
Autism, Ahead of Print.
Currently, the prevalence of autism spectrum disorder (henceforth “autism”) is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15 months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding.Lay abstractCurrently, the prevalence of autism spectrum disorder (henceforth “autism”) is 1 in 36, an increasing trend from previous estimates. In 2015, the United States adopted a new version (International Classification of Diseases, 10th Revision) of the World Health Organization coding system, a standard for classifying medical conditions. Our goal was to examine how the transition to this new coding system impacted autism diagnoses in 10 healthcare systems. We obtained information from electronic medical records and insurance claims data from July 2014 through December 2016 for each healthcare system. We used member enrollment data for 30 consecutive months to observe changes 15 months before and after adoption of the new coding system. Overall, the rates of autism per 1000 enrolled members was increasing for 0- to 5-year-olds before transition to International Classification of Diseases, 10th Revision and did not substantively change after the new coding was in place. There was variation observed in autism diagnoses before and after transition to International Classification of Diseases, 10th Revision for other age groups. The change to the new coding system did not meaningfully affect autism rates at the participating healthcare systems. The increase observed among 0- to 5-year-olds is likely indicative of an ongoing trend related to increases in screening for autism rather than a shift associated with the new coding.
Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships
- January 19, 2024
Autism, Ahead of Print.
This study aimed to investigate the impact of external factors on the experiences and family relationships of autistic adolescents and their families. A qualitative approach was used, with in-depth interviews conducted with 30 participants, including autistic adolescents, siblings and parents from within families with an autistic adolescent family member. The findings suggest that external factors significantly influence the well-being of autistic adolescents and their families. The school environment was identified as a significant factor, with sensory overload, bullying and adverse interactions with teachers having a negative impact on the mental health and quality of family relationships for participants. In addition, the study highlighted that isolation and stigma were major concerns for families, suggesting a need for public efforts to raise awareness and understanding of autism. The lack of appropriate support and services was also identified as a significant challenge that families face. The study highlights the need for person-centred approaches to service provision, which involves including autistic adolescents and their families in the design and delivery of support and services. The study recommends collaboration among schools, service providers, and families, as well as efforts to promote autism-friendly environments in schools and the broader community.Lay abstractThe influence of the environment on different groups of people with disabilities has rarely been studied in the context of neurodevelopmental disabilities, such as autism, in adolescence. This study explored how external responses to autism affect the experiences, outcomes and family relationships of autistic adolescents and their family members, including siblings and parents. This study adds to the knowledge of factors that contribute to the social disadvantage and exclusion autistic adolescents and their families face in their communities. Interviews with 30 participants from families with an autistic adolescent show that external factors greatly impact the well-being of autistic adolescents and their families. The school environment, including sensory overload, bullying and negative interactions with teachers, was found to be a key factor that negatively influenced mental health and family relationships. The study also revealed that isolation and stigma are major concerns for families, indicating the importance of public awareness campaigns to increase understanding of autism. In addition, the lack of adequate support and services presented significant challenges for families. The study emphasises the importance of person-centred approaches to providing services, which involve including autistic individuals and their families in designing and delivering support.
Autism, Ahead of Print.
This study aimed to investigate the impact of external factors on the experiences and family relationships of autistic adolescents and their families. A qualitative approach was used, with in-depth interviews conducted with 30 participants, including autistic adolescents, siblings and parents from within families with an autistic adolescent family member. The findings suggest that external factors significantly influence the well-being of autistic adolescents and their families. The school environment was identified as a significant factor, with sensory overload, bullying and adverse interactions with teachers having a negative impact on the mental health and quality of family relationships for participants. In addition, the study highlighted that isolation and stigma were major concerns for families, suggesting a need for public efforts to raise awareness and understanding of autism. The lack of appropriate support and services was also identified as a significant challenge that families face. The study highlights the need for person-centred approaches to service provision, which involves including autistic adolescents and their families in the design and delivery of support and services. The study recommends collaboration among schools, service providers, and families, as well as efforts to promote autism-friendly environments in schools and the broader community.Lay abstractThe influence of the environment on different groups of people with disabilities has rarely been studied in the context of neurodevelopmental disabilities, such as autism, in adolescence. This study explored how external responses to autism affect the experiences, outcomes and family relationships of autistic adolescents and their family members, including siblings and parents. This study adds to the knowledge of factors that contribute to the social disadvantage and exclusion autistic adolescents and their families face in their communities. Interviews with 30 participants from families with an autistic adolescent show that external factors greatly impact the well-being of autistic adolescents and their families. The school environment, including sensory overload, bullying and negative interactions with teachers, was found to be a key factor that negatively influenced mental health and family relationships. The study also revealed that isolation and stigma are major concerns for families, indicating the importance of public awareness campaigns to increase understanding of autism. In addition, the lack of adequate support and services presented significant challenges for families. The study emphasises the importance of person-centred approaches to providing services, which involve including autistic individuals and their families in designing and delivering support.
Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood
- January 17, 2024
Autism, Ahead of Print.
Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people currently seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21–46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) ‘everything shattered’, (2) ‘being seen’, (3) ‘understanding not judgement, please’ and (4) ‘here’s a leaflet, off you go’. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality.Lay abstractLots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone’s identity and neurodivergence.
Autism, Ahead of Print.
Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people currently seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21–46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) ‘everything shattered’, (2) ‘being seen’, (3) ‘understanding not judgement, please’ and (4) ‘here’s a leaflet, off you go’. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality.Lay abstractLots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone’s identity and neurodivergence.
A meta-ethnography of autistic people’s experiences of social camouflaging and its relationship with mental health
- January 10, 2024
Autism, Ahead of Print.
Some autistic people use strategies to hide autistic behaviour and appear more neurotypical. Previous research has linked this ‘social camouflaging’ with mental health difficulties. This review synthesised qualitative research to explore the relationship between camouflaging and mental health. Thirteen studies were systematically identified, appraised and synthesised using meta-ethnography. Four third-order concepts were developed, describing camouflaging as an attempt to cope with stressful social contexts which impact mental health. Many autistic people experienced unintended negative consequences of their camouflaging that increased stress. Potential mechanisms for the relationship between camouflaging and mental health related to the qualities of the strategies that were used. Camouflaging strategies that were superficially ‘successful’ involved high levels of self-monitoring, were highly cognitively demanding or highly habitual and appeared more linked to poor mental health. This should be investigated in future research and has potential implications for how clinicians support autistic people with mental health difficulties.Lay AbstractSome autistic people describe trying to hide autistic behaviour and seem more neurotypical. Researchers called this ‘social camouflaging’ and have linked it with mental health difficulties. We used a step-by-step approach to identify research where autistic people talk about social camouflaging to explore the relationship between camouflaging and poor mental health. Thirteen studies were combined. The results describe how society negatively impacts autistic people’s mental health, and camouflaging is a way to try and cope with this. Many autistic people find their camouflaging strategies have accidental negative consequences which also affect their mental health. Strategies which seemed ‘successful’ involved a lot of self-monitoring, were very mentally demanding or were very habitual and seemed to have more of an effect on mental health. This might be important for clinicians who support autistic people with mental health difficulties.
Autism, Ahead of Print.
Some autistic people use strategies to hide autistic behaviour and appear more neurotypical. Previous research has linked this ‘social camouflaging’ with mental health difficulties. This review synthesised qualitative research to explore the relationship between camouflaging and mental health. Thirteen studies were systematically identified, appraised and synthesised using meta-ethnography. Four third-order concepts were developed, describing camouflaging as an attempt to cope with stressful social contexts which impact mental health. Many autistic people experienced unintended negative consequences of their camouflaging that increased stress. Potential mechanisms for the relationship between camouflaging and mental health related to the qualities of the strategies that were used. Camouflaging strategies that were superficially ‘successful’ involved high levels of self-monitoring, were highly cognitively demanding or highly habitual and appeared more linked to poor mental health. This should be investigated in future research and has potential implications for how clinicians support autistic people with mental health difficulties.Lay AbstractSome autistic people describe trying to hide autistic behaviour and seem more neurotypical. Researchers called this ‘social camouflaging’ and have linked it with mental health difficulties. We used a step-by-step approach to identify research where autistic people talk about social camouflaging to explore the relationship between camouflaging and poor mental health. Thirteen studies were combined. The results describe how society negatively impacts autistic people’s mental health, and camouflaging is a way to try and cope with this. Many autistic people find their camouflaging strategies have accidental negative consequences which also affect their mental health. Strategies which seemed ‘successful’ involved a lot of self-monitoring, were very mentally demanding or were very habitual and seemed to have more of an effect on mental health. This might be important for clinicians who support autistic people with mental health difficulties.
First things first: An exploration of the effects of psychoeducation for older autistic adults
- January 10, 2024
Autism, Ahead of Print.
A psychoeducation program that was originally developed by the Dutch Association for Autism was adjusted for older adults to enhance its feasibility and efficacy in later life. In this study, we explored the effects of this adapted psychoeducation program for older autistic adults in a pre-test–post-test 6-month follow-up design. A total of 61 patients (55–78 years) and 44 proxies (a person close to them) participated in the study; attrition rate was high for the follow-up assessment. As hypothesized, an increase in knowledge and acceptance of the diagnosis was observed, with a strong and positive correlation between patients and proxies for knowledge. Furthermore, ambiguous results were observed on coping with the diagnosis and no positive effects on psychological distress were found. The feedback of participants and proxies about the psychoeducation program was largely positive. Future research with larger group samples and larger time scales is necessary to gain more insight into the effectiveness of the psychoeducation program. It seems worthwhile to further adjust the program to the needs and requirements of older adults, and to help older autistic adults to construct a new narrative of themselves, and the life they have lived, in the light of the recent autism diagnosis.Lay abstractAfter receiving an autism diagnosis, psychoeducation (i.e. information regarding autism) is a first intervention. We adjusted a psychoeducation program that was originally developed by the Dutch Association for Autism for older adults to enhance its feasibility and efficacy in later life. We expected that participants would report an increase in knowledge and acceptance of the diagnosis and that people close to them would also observe this. Indeed, we found this and participants and those close to them agreed on this. Furthermore, we found some evidence that older autistic adults were better at coping with their autism. We found no positive intervention effects on psychological distress. The feedback of participants and informants about the psychoeducation program was largely positive. In future research, we advise using larger group samples and larger time scales and we also advise to further adjust the program to the needs and requirements of older adults, and to help older autistic adults to construct a new narrative of themselves, and the life they have lived, in the light of the recent autism diagnosis.
Autism, Ahead of Print.
A psychoeducation program that was originally developed by the Dutch Association for Autism was adjusted for older adults to enhance its feasibility and efficacy in later life. In this study, we explored the effects of this adapted psychoeducation program for older autistic adults in a pre-test–post-test 6-month follow-up design. A total of 61 patients (55–78 years) and 44 proxies (a person close to them) participated in the study; attrition rate was high for the follow-up assessment. As hypothesized, an increase in knowledge and acceptance of the diagnosis was observed, with a strong and positive correlation between patients and proxies for knowledge. Furthermore, ambiguous results were observed on coping with the diagnosis and no positive effects on psychological distress were found. The feedback of participants and proxies about the psychoeducation program was largely positive. Future research with larger group samples and larger time scales is necessary to gain more insight into the effectiveness of the psychoeducation program. It seems worthwhile to further adjust the program to the needs and requirements of older adults, and to help older autistic adults to construct a new narrative of themselves, and the life they have lived, in the light of the recent autism diagnosis.Lay abstractAfter receiving an autism diagnosis, psychoeducation (i.e. information regarding autism) is a first intervention. We adjusted a psychoeducation program that was originally developed by the Dutch Association for Autism for older adults to enhance its feasibility and efficacy in later life. We expected that participants would report an increase in knowledge and acceptance of the diagnosis and that people close to them would also observe this. Indeed, we found this and participants and those close to them agreed on this. Furthermore, we found some evidence that older autistic adults were better at coping with their autism. We found no positive intervention effects on psychological distress. The feedback of participants and informants about the psychoeducation program was largely positive. In future research, we advise using larger group samples and larger time scales and we also advise to further adjust the program to the needs and requirements of older adults, and to help older autistic adults to construct a new narrative of themselves, and the life they have lived, in the light of the recent autism diagnosis.
Exploring social touch in autistic and non-autistic adults via a self-report body-painting task: The role of sex, social context and body area
- January 05, 2024
Autism, Ahead of Print.
In the typically developing population, social touch experiences are influenced by several factors, including the biological sex of toucher and receiver, the body area wherein the touch is delivered and the social context in which the tactile exchange occurs. However, it is currently unexplored how social touch experiences of autistic adults are modulated by these factors. We sought to address this by utilizing a self-report body-painting task. Our main results show that autistic, compared with non-autistic, adults reported lower levels of pleasantness, erogeneity and appropriateness, specifically in intimate and friendly social contexts and in body areas typically touched in these situations. Importantly, sex played a major role in group differences. For instance, although autistic females reported, across social contexts, less pleasantness than both non-autistic females and autistic males, they experienced similar levels of appropriateness in the professional social context, usually deemed as touch-appropriate. Our findings provide new support to the hypothesis that social touch is experienced and possibly conceptualized differently by autistic compared with non-autistic adults. Moreover, by identifying the factors that influence social touch processing in autistic adults, our results might aid the development of support for autistic individuals seeking help in the spheres of social and intimate touch.Lay AbstractWhat is already known about the topic?At least in neurotypical individuals, social touch represents an important channel for emotional communication associated with social bonding and pain/anxiety modulation. Autistic adults report to avoid social touch more and to have different tactile sensitivity than their non-autistic comparisons.What this paper adds?Few studies specifically investigated social touch in autistic individuals, and none of them examined the role of participants’ sex, social context in which social touch occurs, and specific body areas being touched. In our study, adult participants reported how pleasant, erogenous and appropriate they would consider touches delivered by another person over their entire body in intimate (date), friendly (dance class) and professional (physiotherapy-massage session) social contexts. Autistic adults reported social touch to be less pleasant, erogenous and appropriate specifically in intimate and friendly social contexts and in body areas typically touched in these situations. Importantly, autistic females seem more at risk to experience unpleasant social touch as, although they considered it more unpleasant than non-autistic females and autistic males, they did consider it similarly appropriate in professional social contexts where touch is normed to be socially appropriate.Implications for practice, research or policyOur results might improve awareness and understanding about autistic adults’ different, and often more discomforting, experience of social touch and thus help consider and respect it during everyday social interactions. Our results might also benefit future research investigating, for instance, the neural underpinnings of social touch differences in autism or aiming at developing support for autistic individuals seeking help in the diverse spheres of social touch.
Autism, Ahead of Print.
In the typically developing population, social touch experiences are influenced by several factors, including the biological sex of toucher and receiver, the body area wherein the touch is delivered and the social context in which the tactile exchange occurs. However, it is currently unexplored how social touch experiences of autistic adults are modulated by these factors. We sought to address this by utilizing a self-report body-painting task. Our main results show that autistic, compared with non-autistic, adults reported lower levels of pleasantness, erogeneity and appropriateness, specifically in intimate and friendly social contexts and in body areas typically touched in these situations. Importantly, sex played a major role in group differences. For instance, although autistic females reported, across social contexts, less pleasantness than both non-autistic females and autistic males, they experienced similar levels of appropriateness in the professional social context, usually deemed as touch-appropriate. Our findings provide new support to the hypothesis that social touch is experienced and possibly conceptualized differently by autistic compared with non-autistic adults. Moreover, by identifying the factors that influence social touch processing in autistic adults, our results might aid the development of support for autistic individuals seeking help in the spheres of social and intimate touch.Lay AbstractWhat is already known about the topic?At least in neurotypical individuals, social touch represents an important channel for emotional communication associated with social bonding and pain/anxiety modulation. Autistic adults report to avoid social touch more and to have different tactile sensitivity than their non-autistic comparisons.What this paper adds?Few studies specifically investigated social touch in autistic individuals, and none of them examined the role of participants’ sex, social context in which social touch occurs, and specific body areas being touched. In our study, adult participants reported how pleasant, erogenous and appropriate they would consider touches delivered by another person over their entire body in intimate (date), friendly (dance class) and professional (physiotherapy-massage session) social contexts. Autistic adults reported social touch to be less pleasant, erogenous and appropriate specifically in intimate and friendly social contexts and in body areas typically touched in these situations. Importantly, autistic females seem more at risk to experience unpleasant social touch as, although they considered it more unpleasant than non-autistic females and autistic males, they did consider it similarly appropriate in professional social contexts where touch is normed to be socially appropriate.Implications for practice, research or policyOur results might improve awareness and understanding about autistic adults’ different, and often more discomforting, experience of social touch and thus help consider and respect it during everyday social interactions. Our results might also benefit future research investigating, for instance, the neural underpinnings of social touch differences in autism or aiming at developing support for autistic individuals seeking help in the diverse spheres of social touch.
Measuring autism-associated traits in the general population: Factor structure and measurement invariance across sex and diagnosis status of the Social Communication Questionnaire
- December 30, 2023
Autism, Ahead of Print.
Autism screening questionnaires are sometimes used as a measure of “autism-associated traits” in samples drawn from the general population, even though such tools are primarily developed and designed for use in samples of children diagnosed with or being assessed for autism. Here, we explore the psychometric properties of the Social Communication Questionnaire (SCQ) current version reported at age 8 in a large population-based sample. Using data from the Norwegian Mother, Father and Child Cohort study (MoBa), we perform exploratory (N = 21,775) and confirmatory (N = 21,674) factor analyses on items and compare our results with previously suggested factor structure models of the SCQ. Furthermore, we test for measurement invariance across sex and registry-ascertained autism diagnostic status (Ndiagnosed = 636). A 5-factor model provided best fit to the data in both children with and without autism diagnoses, though with some qualitative differences in what the factors represent across these groups. This model performed largely consistently across boys and girls in the general population. Taken together, the SCQ’s measurement properties must be carefully considered when it is used in population-based samples and measurement invariance testing of other autism screening tools used in similar contexts is warranted.Lay abstractUsing questionnaires in research relies on the expectation that they measure the same things across different groups of individuals. If this is not true, then interpretations of results can be misleading when researchers compare responses across different groups of individuals or use in it a group that differs from that in which the questionnaire was developed. For the questionnaire we investigated, the Social Communication Questionnaire (SCQ), we found that parents of boys and girls responded to questionnaire items in largely the same way but that the SCQ measured traits and behaviors slightly differently depending on whether the children had autism. Based on these results, we concluded that researchers using this questionnaire should carefully consider these differences when deciding how to interpret findings. SCQ scores as a reflection of “autism-associated traits” in samples that are mostly or entirely made up of individuals without an autism diagnosis may be misleading and we encourage a more precise interpretation of scores as a broader indication of social-communicative and behavioral traits.
Autism, Ahead of Print.
Autism screening questionnaires are sometimes used as a measure of “autism-associated traits” in samples drawn from the general population, even though such tools are primarily developed and designed for use in samples of children diagnosed with or being assessed for autism. Here, we explore the psychometric properties of the Social Communication Questionnaire (SCQ) current version reported at age 8 in a large population-based sample. Using data from the Norwegian Mother, Father and Child Cohort study (MoBa), we perform exploratory (N = 21,775) and confirmatory (N = 21,674) factor analyses on items and compare our results with previously suggested factor structure models of the SCQ. Furthermore, we test for measurement invariance across sex and registry-ascertained autism diagnostic status (Ndiagnosed = 636). A 5-factor model provided best fit to the data in both children with and without autism diagnoses, though with some qualitative differences in what the factors represent across these groups. This model performed largely consistently across boys and girls in the general population. Taken together, the SCQ’s measurement properties must be carefully considered when it is used in population-based samples and measurement invariance testing of other autism screening tools used in similar contexts is warranted.Lay abstractUsing questionnaires in research relies on the expectation that they measure the same things across different groups of individuals. If this is not true, then interpretations of results can be misleading when researchers compare responses across different groups of individuals or use in it a group that differs from that in which the questionnaire was developed. For the questionnaire we investigated, the Social Communication Questionnaire (SCQ), we found that parents of boys and girls responded to questionnaire items in largely the same way but that the SCQ measured traits and behaviors slightly differently depending on whether the children had autism. Based on these results, we concluded that researchers using this questionnaire should carefully consider these differences when deciding how to interpret findings. SCQ scores as a reflection of “autism-associated traits” in samples that are mostly or entirely made up of individuals without an autism diagnosis may be misleading and we encourage a more precise interpretation of scores as a broader indication of social-communicative and behavioral traits.
School absenteeism in autistic children and adolescents: A scoping review
- December 30, 2023
Autism, Ahead of Print.
School absenteeism is a major societal problem, with a range of potential adverse long-term consequences. This scoping review aimed to provide a comprehensive overview of the research on school absenteeism in autistic children and adolescents, expose important gaps in the literature, and explore possibilities for future systematic reviews. Five relevant databases were searched systematically from inception to June 2023, yielding a total of 46 eligible reports from 42 separate studies. All studies were conducted in high-income countries, and most were published in the last decade. Three major themes emerged: occurrence, contextual factors, and interventions. The results of large-scale population-based studies clearly suggested that autistic children and adolescents were absent from school more often than their non-autistic peers, which partly was attributable to co-occurring conditions. Bullying also emerged as a potential risk factor. Only a few preliminary studies were available on targeted interventions, emphasizing the need for more robust studies. More research is also needed on the mechanisms leading to and maintaining school absenteeism in this group of learners. Overall, the diversity of research questions, methods, and definitions used in this body of research suggests that systematic reviews with narrow focus on a few key questions may still be premature.Lay abstractAutistic children and teenagers are, on average, absent from school more than their peers. The aim of this review was to provide an overview of the research on absence from school in autistic learners in primary and secondary school, to help guide future research. We sifted through 4632 reports and found 42 studies with a focus on school absence and autism. We looked at how, when, and where the studies were conducted. We also summarized the results and outlined how absence was measured in the studies. Absence from school may lead to problems later in life, like incomplete education and unemployment. It is therefore important to know how common this problem is among autistic learners, what the reasons may be, and what type of support they need. The studies were from high-income countries and were mainly published in the last 10 years. Studies based on school registers from the United States and the United Kingdom clearly showed that children and teenagers with autism had higher risk of school absence than those without autism. Absence was often linked to problems with mental health or additional neurodevelopmental conditions. Several studies also showed that absence in autistic children and adolescents was related to problems in school, like bullying or lack of knowledge about autism. Support programs were only evaluated in a few studies with a small number of study participants. We conclude that more research is needed to better understand why autistic learners are absent and what they need to thrive in school.
Autism, Ahead of Print.
School absenteeism is a major societal problem, with a range of potential adverse long-term consequences. This scoping review aimed to provide a comprehensive overview of the research on school absenteeism in autistic children and adolescents, expose important gaps in the literature, and explore possibilities for future systematic reviews. Five relevant databases were searched systematically from inception to June 2023, yielding a total of 46 eligible reports from 42 separate studies. All studies were conducted in high-income countries, and most were published in the last decade. Three major themes emerged: occurrence, contextual factors, and interventions. The results of large-scale population-based studies clearly suggested that autistic children and adolescents were absent from school more often than their non-autistic peers, which partly was attributable to co-occurring conditions. Bullying also emerged as a potential risk factor. Only a few preliminary studies were available on targeted interventions, emphasizing the need for more robust studies. More research is also needed on the mechanisms leading to and maintaining school absenteeism in this group of learners. Overall, the diversity of research questions, methods, and definitions used in this body of research suggests that systematic reviews with narrow focus on a few key questions may still be premature.Lay abstractAutistic children and teenagers are, on average, absent from school more than their peers. The aim of this review was to provide an overview of the research on absence from school in autistic learners in primary and secondary school, to help guide future research. We sifted through 4632 reports and found 42 studies with a focus on school absence and autism. We looked at how, when, and where the studies were conducted. We also summarized the results and outlined how absence was measured in the studies. Absence from school may lead to problems later in life, like incomplete education and unemployment. It is therefore important to know how common this problem is among autistic learners, what the reasons may be, and what type of support they need. The studies were from high-income countries and were mainly published in the last 10 years. Studies based on school registers from the United States and the United Kingdom clearly showed that children and teenagers with autism had higher risk of school absence than those without autism. Absence was often linked to problems with mental health or additional neurodevelopmental conditions. Several studies also showed that absence in autistic children and adolescents was related to problems in school, like bullying or lack of knowledge about autism. Support programs were only evaluated in a few studies with a small number of study participants. We conclude that more research is needed to better understand why autistic learners are absent and what they need to thrive in school.
Inclusion of autistic students in schools: Knowledge, self-efficacy, and attitude of teachers in Germany
- December 29, 2023
Autism, Ahead of Print.
To provide inclusive education to autistic students, it is important that teachers possess knowledge about autism, feel competent in teaching autistic students, and have a positive attitude toward the inclusion of autistic students. In this study, we explored knowledge, self-efficacy, and attitude concerning autism among N = 887 teachers in Germany. The results showed that knowledge about autism was only moderate and teachers held some typical misconceptions about autism. Moreover, teachers did not possess overwhelmingly high self-efficacy beliefs whereas their attitude toward inclusion of autistic students was rather positive. Experience with teaching autistic students was associated with more knowledge and higher self-efficacy. Also, female teachers were more knowledgeable about autism and felt more competent in teaching autistic students than male teachers. However, the type of school where teachers were working made hardly any difference in their knowledge, self-efficacy, and attitude. Overall, the results suggest that teachers in Germany need more autism training to increase their knowledge about autism and their self-efficacy beliefs in teaching autistic students.Lay AbstractNowadays, autistic students are often enrolled in mainstream schools. To successfully include autistic students in general education, teachers need to possess knowledge about autism, feel competent in teaching autistic students, and have a positive attitude toward their inclusion. However, in Germany, little is known about the knowledge, the self-efficacy, and the attitude concerning autism among teachers working at mainstream schools. Therefore, we conducted a study in which we used items to assess knowledge, self-efficacy, and attitude. A total of 887 general education teachers participated in the study. The results showed that the level of knowledge about autism was moderate among teachers. Similarly, teachers did not hold overwhelmingly high self-efficacy beliefs. However, their attitude toward inclusion of autistic students was rather positive. At the same time, teachers who had experience with teaching autistic students possessed more knowledge and higher self-efficacy than teachers who had no experience with teaching autistic students. In addition, female teachers were more knowledgeable about autism and felt more competent in teaching autistic students than male teachers. In contrast, knowledge, self-efficacy, and attitude were rather similar among teachers from different types of schools. The findings suggest that teachers in Germany should possess more knowledge about autism and feel more competent in teaching autistic students. Therefore, it is important to systematically include autism trainings in teacher education programs.
Autism, Ahead of Print.
To provide inclusive education to autistic students, it is important that teachers possess knowledge about autism, feel competent in teaching autistic students, and have a positive attitude toward the inclusion of autistic students. In this study, we explored knowledge, self-efficacy, and attitude concerning autism among N = 887 teachers in Germany. The results showed that knowledge about autism was only moderate and teachers held some typical misconceptions about autism. Moreover, teachers did not possess overwhelmingly high self-efficacy beliefs whereas their attitude toward inclusion of autistic students was rather positive. Experience with teaching autistic students was associated with more knowledge and higher self-efficacy. Also, female teachers were more knowledgeable about autism and felt more competent in teaching autistic students than male teachers. However, the type of school where teachers were working made hardly any difference in their knowledge, self-efficacy, and attitude. Overall, the results suggest that teachers in Germany need more autism training to increase their knowledge about autism and their self-efficacy beliefs in teaching autistic students.Lay AbstractNowadays, autistic students are often enrolled in mainstream schools. To successfully include autistic students in general education, teachers need to possess knowledge about autism, feel competent in teaching autistic students, and have a positive attitude toward their inclusion. However, in Germany, little is known about the knowledge, the self-efficacy, and the attitude concerning autism among teachers working at mainstream schools. Therefore, we conducted a study in which we used items to assess knowledge, self-efficacy, and attitude. A total of 887 general education teachers participated in the study. The results showed that the level of knowledge about autism was moderate among teachers. Similarly, teachers did not hold overwhelmingly high self-efficacy beliefs. However, their attitude toward inclusion of autistic students was rather positive. At the same time, teachers who had experience with teaching autistic students possessed more knowledge and higher self-efficacy than teachers who had no experience with teaching autistic students. In addition, female teachers were more knowledgeable about autism and felt more competent in teaching autistic students than male teachers. In contrast, knowledge, self-efficacy, and attitude were rather similar among teachers from different types of schools. The findings suggest that teachers in Germany should possess more knowledge about autism and feel more competent in teaching autistic students. Therefore, it is important to systematically include autism trainings in teacher education programs.
Turkish Validation of the Rapid Interactive Screening Test for Autism in Toddlers
- December 29, 2023
Autism, Ahead of Print.
This study aims to investigate the validation of the Rapid Interactive Screening Test for Autism in Toddlers (RITA-T) in Turkish toddlers between 18 and 36 months of age. Children aged 18–36 months were referred to the department of child psychiatry for concerns of autism spectrum disorder, language disorder, developmental delay, and typically developing children were enrolled. A total of 81 toddlers participating in the study received clinical interviews according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) and the Childhood Autism Rating Scale. They received the translated RIT-T from reliably trained and blinded providers. Parents completed the Modified Checklist for Autism in Toddlers form. A cut-off score was calculated based on the sensitivity, specificity, positive, and negative predictive values of the RITA-T total score that best differentiates autism spectrum disorder diagnosis. For all participants, the RITA-T total score correlated with the Modified Checklist for Autism in Toddlers (r = 0.715) and the Childhood Autism Rating Scale total score (r = 0.825). Using a cut-off score of ⩾17, the RITA-T had a sensitivity of .90 and a specificity of .927 for identifying autism spectrum disorder risk. The area under the curve was .977. Our findings demonstrate that the RITA-T is effective in Turkish toddlers for the early identification of autism spectrum disorder, early intervention settings, and allowing access to treatment.Lay abstractIt is important to diagnose autism spectrum disorder at an early age and to start an early intervention program without delay. In this study, we aimed to validate the Rapid Interactive Screening Test for Autism in Toddlers (RITA-T) in a group of Turkish children and found that the RITA-T which has been shown to be a valid and reliable screening test for 18- to 36-month-old children in studies conducted in different countries, is also valid in Turkish children. Similar to previous studies, our results showed that the RITA-T has good sensitivity and specificity in distinguishing children with autism spectrum disorder. We think that our study will contribute to the timely initiation of early intervention programs for many children with autism by enabling a valid test to be used in screening programs.
Autism, Ahead of Print.
This study aims to investigate the validation of the Rapid Interactive Screening Test for Autism in Toddlers (RITA-T) in Turkish toddlers between 18 and 36 months of age. Children aged 18–36 months were referred to the department of child psychiatry for concerns of autism spectrum disorder, language disorder, developmental delay, and typically developing children were enrolled. A total of 81 toddlers participating in the study received clinical interviews according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) and the Childhood Autism Rating Scale. They received the translated RIT-T from reliably trained and blinded providers. Parents completed the Modified Checklist for Autism in Toddlers form. A cut-off score was calculated based on the sensitivity, specificity, positive, and negative predictive values of the RITA-T total score that best differentiates autism spectrum disorder diagnosis. For all participants, the RITA-T total score correlated with the Modified Checklist for Autism in Toddlers (r = 0.715) and the Childhood Autism Rating Scale total score (r = 0.825). Using a cut-off score of ⩾17, the RITA-T had a sensitivity of .90 and a specificity of .927 for identifying autism spectrum disorder risk. The area under the curve was .977. Our findings demonstrate that the RITA-T is effective in Turkish toddlers for the early identification of autism spectrum disorder, early intervention settings, and allowing access to treatment.Lay abstractIt is important to diagnose autism spectrum disorder at an early age and to start an early intervention program without delay. In this study, we aimed to validate the Rapid Interactive Screening Test for Autism in Toddlers (RITA-T) in a group of Turkish children and found that the RITA-T which has been shown to be a valid and reliable screening test for 18- to 36-month-old children in studies conducted in different countries, is also valid in Turkish children. Similar to previous studies, our results showed that the RITA-T has good sensitivity and specificity in distinguishing children with autism spectrum disorder. We think that our study will contribute to the timely initiation of early intervention programs for many children with autism by enabling a valid test to be used in screening programs.
Scene construction ability in neurotypical and autistic adults
- December 28, 2023
Autism, Ahead of Print.
People with autism spectrum conditions (ASC) have difficulties mentally simulating events, perhaps due to a difficulty mentally generating and maintaining a coherent spatial scene – that is, ‘scene construction’. The current study compared scene construction ability between autistic adults (N = 55) and age-, gender- and Intelligence Quotient-matched neurotypical adults (N = 63), using a task in which participants were asked to vividly imagine and describe fictitious scenes. Results showed that scene construction was diminished in autistic compared to neurotypical participants and was negatively associated with autistic traits. ASC diagnosis did not influence the frequency of self-reference or sensory experiences, which followed the same pattern in both groups: sight was referenced more than sound, sound was referenced more than both touch and smell, which were both referenced more than taste. Exploratory analysis of some of the cognitive predictors revealed that scene construction ability was associated with individual differences in Theory of Mind and alexithymia.Lay AbstractPeople with autism spectrum conditions (ASC) have difficulties imagining events, which might result from difficulty mentally generating and maintaining a coherent spatial scene. This study compared this scene construction ability between autistic (N = 55) and neurotypical (N = 63) adults. Results showed that scene construction was diminished in autistic compared to neurotypical participants, and participants with fewer autistic traits had better scene construction ability. ASC diagnosis did not influence the frequency of mentions of the self or of sensory experiences. Exploratory analysis suggests that scene construction ability is associated with the ability to understand our own and other people’s mental states, and that these individual-level preferences/cognitive styles can overrule typical group-level characteristics.
Autism, Ahead of Print.
People with autism spectrum conditions (ASC) have difficulties mentally simulating events, perhaps due to a difficulty mentally generating and maintaining a coherent spatial scene – that is, ‘scene construction’. The current study compared scene construction ability between autistic adults (N = 55) and age-, gender- and Intelligence Quotient-matched neurotypical adults (N = 63), using a task in which participants were asked to vividly imagine and describe fictitious scenes. Results showed that scene construction was diminished in autistic compared to neurotypical participants and was negatively associated with autistic traits. ASC diagnosis did not influence the frequency of self-reference or sensory experiences, which followed the same pattern in both groups: sight was referenced more than sound, sound was referenced more than both touch and smell, which were both referenced more than taste. Exploratory analysis of some of the cognitive predictors revealed that scene construction ability was associated with individual differences in Theory of Mind and alexithymia.Lay AbstractPeople with autism spectrum conditions (ASC) have difficulties imagining events, which might result from difficulty mentally generating and maintaining a coherent spatial scene. This study compared this scene construction ability between autistic (N = 55) and neurotypical (N = 63) adults. Results showed that scene construction was diminished in autistic compared to neurotypical participants, and participants with fewer autistic traits had better scene construction ability. ASC diagnosis did not influence the frequency of mentions of the self or of sensory experiences. Exploratory analysis suggests that scene construction ability is associated with the ability to understand our own and other people’s mental states, and that these individual-level preferences/cognitive styles can overrule typical group-level characteristics.
Is parent education a factor in identifying autism/takiwātanga in an ethnic cohort of Pacific children in Aotearoa, New Zealand? A national cross-sectional study using linked administrative data
- December 28, 2023
Autism, Ahead of Print.
Studies have found early detection of autism is protective for an individual and their family. Fewer Pacific children are diagnosed with autism compared with non-Pacific children, and those who have significantly higher needs, suggesting an undercount of those diagnosed. The purpose of this study was to explore any association between parental education and autism in Pacific children living in Aotearoa, New Zealand. This was a national cross-sectional study using data from New Zealand’s Integrated Data Infrastructure, including Pacific and non-Māori non-Pacific children in the 2013 Census. A novel method was employed to capture autism, while years of parents’ education was estimated from their highest attained qualification level. Apposite regression models were used to analyse the relationship between parental education and autism. We found that autism was identified in 1.1% of Pacific children compared with 1.6% of non-Māori, non-Pacific children. A year of education among parents of Pacific children was associated with increased identification of autism (odds ratio = 1.10; 95% confidence interval = 1.06–1.15). The findings show education plays a positive role in receiving a diagnosis for Pacific autistic children but suggest a systemic failure to support Pacific parents to navigate existing health systems for themselves or their children.Lay abstractPrevious studies of autism in Aotearoa, New Zealand, suggest that fewer Pacific children receive an autism diagnosis compared to European children. This study aimed to explore if formal education qualification of parents is related to receiving an autism diagnosis for their Pacific child. Our findings show that autism was identified in 1.1% of Pacific children compared with 1.6% among non-Māori, non-Pacific children. Parents with higher levels of education were more likely to receive an autism diagnosis for their Pacific child. While the study findings indicate education plays a positive role in receiving a diagnosis for autistic children, they suggest a systemic failure of supporting Pacific parents and communities to navigate the health and education systems that exist in Aotearoa, New Zealand.
Autism, Ahead of Print.
Studies have found early detection of autism is protective for an individual and their family. Fewer Pacific children are diagnosed with autism compared with non-Pacific children, and those who have significantly higher needs, suggesting an undercount of those diagnosed. The purpose of this study was to explore any association between parental education and autism in Pacific children living in Aotearoa, New Zealand. This was a national cross-sectional study using data from New Zealand’s Integrated Data Infrastructure, including Pacific and non-Māori non-Pacific children in the 2013 Census. A novel method was employed to capture autism, while years of parents’ education was estimated from their highest attained qualification level. Apposite regression models were used to analyse the relationship between parental education and autism. We found that autism was identified in 1.1% of Pacific children compared with 1.6% of non-Māori, non-Pacific children. A year of education among parents of Pacific children was associated with increased identification of autism (odds ratio = 1.10; 95% confidence interval = 1.06–1.15). The findings show education plays a positive role in receiving a diagnosis for Pacific autistic children but suggest a systemic failure to support Pacific parents to navigate existing health systems for themselves or their children.Lay abstractPrevious studies of autism in Aotearoa, New Zealand, suggest that fewer Pacific children receive an autism diagnosis compared to European children. This study aimed to explore if formal education qualification of parents is related to receiving an autism diagnosis for their Pacific child. Our findings show that autism was identified in 1.1% of Pacific children compared with 1.6% among non-Māori, non-Pacific children. Parents with higher levels of education were more likely to receive an autism diagnosis for their Pacific child. While the study findings indicate education plays a positive role in receiving a diagnosis for autistic children, they suggest a systemic failure of supporting Pacific parents and communities to navigate the health and education systems that exist in Aotearoa, New Zealand.
A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood
- December 28, 2023
Autism, Ahead of Print.
Many autistic people and people with non-spectrum neurodevelopmental disabilities (e.g. intellectual disability) report feeling lonely, which can negatively impact their well-being. There is little longitudinal research, however, tracking changes in how autistic people experience, conceptualize, and cope with loneliness throughout their lives. A longitudinal sample of 114 people, which included autistic participants and participants with neurodevelopmental disabilities, characterized experiences of loneliness, perceptions of other people’s loneliness, and strategies used to cope with loneliness from childhood to adulthood. Level of loneliness and coping strategies were coded from Autism Diagnostic Observation Schedule Modules 3 and 4 protocol forms. Autism Diagnostic Observation Schedule Loneliness Ratings were correlated across time and increased from adolescence to young adulthood. The most common loneliness coping strategies were Behavioral Distraction (e.g. watching TV) and Instrumental Action (e.g. seeking social contact), which were both used by more people in adulthood than childhood. Those who used Behavioral Distraction and a greater number of coping strategies had higher Autism Diagnostic Observation Schedule Loneliness–Self Ratings (i.e. were lonelier) during adolescence and adulthood. Findings highlight adulthood as a particularly vulnerable time for loneliness and indicate a need for more support and social opportunities for autistic adults and adults with neurodevelopmental disabilities who wish to make more social connections.Lay abstractWe know that many autistic people feel lonely, but we don’t know whether their loneliness changes over time. Our research study followed autistic people and people with other non-spectrum neurodevelopmental disabilities from childhood through young adulthood and asked them about their loneliness. While many people told us they felt lonely or very lonely, a sizable group also told us that they do not feel lonely. We found that people who reported feeling lonely earlier in life were likely to also report feeling lonely later in life. Overall, autistic people and people with other neurodevelopmental disabilities in our study became lonelier from adolescence to adulthood. People described multiple ways they cope with feeling lonely, such as distracting themselves or reaching out to connect with another person. People who used distraction tended to be lonelier than those who did not. Our findings tell us that there is a need for greater support of social connections for many autistic people as they become adults.
Autism, Ahead of Print.
Many autistic people and people with non-spectrum neurodevelopmental disabilities (e.g. intellectual disability) report feeling lonely, which can negatively impact their well-being. There is little longitudinal research, however, tracking changes in how autistic people experience, conceptualize, and cope with loneliness throughout their lives. A longitudinal sample of 114 people, which included autistic participants and participants with neurodevelopmental disabilities, characterized experiences of loneliness, perceptions of other people’s loneliness, and strategies used to cope with loneliness from childhood to adulthood. Level of loneliness and coping strategies were coded from Autism Diagnostic Observation Schedule Modules 3 and 4 protocol forms. Autism Diagnostic Observation Schedule Loneliness Ratings were correlated across time and increased from adolescence to young adulthood. The most common loneliness coping strategies were Behavioral Distraction (e.g. watching TV) and Instrumental Action (e.g. seeking social contact), which were both used by more people in adulthood than childhood. Those who used Behavioral Distraction and a greater number of coping strategies had higher Autism Diagnostic Observation Schedule Loneliness–Self Ratings (i.e. were lonelier) during adolescence and adulthood. Findings highlight adulthood as a particularly vulnerable time for loneliness and indicate a need for more support and social opportunities for autistic adults and adults with neurodevelopmental disabilities who wish to make more social connections.Lay abstractWe know that many autistic people feel lonely, but we don’t know whether their loneliness changes over time. Our research study followed autistic people and people with other non-spectrum neurodevelopmental disabilities from childhood through young adulthood and asked them about their loneliness. While many people told us they felt lonely or very lonely, a sizable group also told us that they do not feel lonely. We found that people who reported feeling lonely earlier in life were likely to also report feeling lonely later in life. Overall, autistic people and people with other neurodevelopmental disabilities in our study became lonelier from adolescence to adulthood. People described multiple ways they cope with feeling lonely, such as distracting themselves or reaching out to connect with another person. People who used distraction tended to be lonelier than those who did not. Our findings tell us that there is a need for greater support of social connections for many autistic people as they become adults.
Non-autistic observers both detect and demonstrate the double empathy problem when evaluating interactions between autistic and non-autistic adults
- December 27, 2023
Autism, Ahead of Print.
Consistent with a “double empathy” framework, autistic adults often experience better interaction with autistic compared with non-autistic partners. Here, we examined whether non-autistic observers detect differences in autistic interactions relative to non-autistic and mixed ones. Non-autistic adults (N = 102) rated the interaction quality and traits of 42 autistic and 44 non-autistic male participants interacting in same or mixed-neurotype dyads. Non-autistic interactions and participants were evaluated most positively, with participants rated more favorably when interacting with non-autistic partners and rated as less intelligent and awkward when interacting with autistic partners. Observers perceived mixed interactions as the least successful overall. Whereas non-autistic interactions were rated as smoother and more enjoyable than mixed interactions, they were not rated differently from autistic interactions on any measure of interaction quality. Observers also perceived that non-autistic participants but not autistic participants disclosed more to non-autistic partners. However, they evaluated autistic participants more negatively than their partners in the interaction evaluated them; they disproportionately underestimated trust and intelligence ratings made by autistic participants; and they and reported lower social interest in participants than did the autistic and non-autistic people in the interactions. Collectively, these findings indicate that non-autistic adults both detect and demonstrate the double empathy problem when observing social interactions involving autistic people.Lay AbstractThe “double empathy problem” refers to breakdowns in communication and understanding that frequently occur between autistic and non-autistic people. Previous studies have shown that autistic people often establish better rapport and connection when interacting with other autistic people compared to when interacting with non-autistic people, but it is unclear whether this is noticeable to non-autistic observers. In this study, 102 non-autistic undergraduate students viewed and rated video recordings of “get to know you” conversations between pairs of autistic and non-autistic adults. Sometimes the pairs were two autistic people, sometimes they were two non-autistic people, and sometimes they were “mixed” interactions of one autistic and one non-autistic person. Observers tended to rate non-autistic participants and their interactions the most favorably, but—consistent with the “double empathy problem”—they rated mixed interactions between autistic and non-autistic people as the least successful. They also perceived that only non-autistic people disclosed more when interacting with a non-autistic conversation partner. Autistic participants’ partners in the conversations tended to evaluate them more favorably than did outside observers, suggesting that personal contact may facilitate more positive evaluations of autistic people. Furthermore, observers expressed less social interest in participants than did the autistic and non-autistic participants in the interactions. Together, these findings suggest that non-autistic observers both detect and demonstrate some aspects of the double empathy problem.
Autism, Ahead of Print.
Consistent with a “double empathy” framework, autistic adults often experience better interaction with autistic compared with non-autistic partners. Here, we examined whether non-autistic observers detect differences in autistic interactions relative to non-autistic and mixed ones. Non-autistic adults (N = 102) rated the interaction quality and traits of 42 autistic and 44 non-autistic male participants interacting in same or mixed-neurotype dyads. Non-autistic interactions and participants were evaluated most positively, with participants rated more favorably when interacting with non-autistic partners and rated as less intelligent and awkward when interacting with autistic partners. Observers perceived mixed interactions as the least successful overall. Whereas non-autistic interactions were rated as smoother and more enjoyable than mixed interactions, they were not rated differently from autistic interactions on any measure of interaction quality. Observers also perceived that non-autistic participants but not autistic participants disclosed more to non-autistic partners. However, they evaluated autistic participants more negatively than their partners in the interaction evaluated them; they disproportionately underestimated trust and intelligence ratings made by autistic participants; and they and reported lower social interest in participants than did the autistic and non-autistic people in the interactions. Collectively, these findings indicate that non-autistic adults both detect and demonstrate the double empathy problem when observing social interactions involving autistic people.Lay AbstractThe “double empathy problem” refers to breakdowns in communication and understanding that frequently occur between autistic and non-autistic people. Previous studies have shown that autistic people often establish better rapport and connection when interacting with other autistic people compared to when interacting with non-autistic people, but it is unclear whether this is noticeable to non-autistic observers. In this study, 102 non-autistic undergraduate students viewed and rated video recordings of “get to know you” conversations between pairs of autistic and non-autistic adults. Sometimes the pairs were two autistic people, sometimes they were two non-autistic people, and sometimes they were “mixed” interactions of one autistic and one non-autistic person. Observers tended to rate non-autistic participants and their interactions the most favorably, but—consistent with the “double empathy problem”—they rated mixed interactions between autistic and non-autistic people as the least successful. They also perceived that only non-autistic people disclosed more when interacting with a non-autistic conversation partner. Autistic participants’ partners in the conversations tended to evaluate them more favorably than did outside observers, suggesting that personal contact may facilitate more positive evaluations of autistic people. Furthermore, observers expressed less social interest in participants than did the autistic and non-autistic participants in the interactions. Together, these findings suggest that non-autistic observers both detect and demonstrate some aspects of the double empathy problem.
‘It’s a symbolic violence’: Autistic people’s experiences of discrimination at universities in Australia
- December 27, 2023
Autism, Ahead of Print.
In recent years, the number of autistic people entering university has increased in Australia and worldwide. While an encouraging trend, autistic students’ completion rates remain much lower than non-autistic students in Australia. Perhaps unsurprisingly, numerous studies investigating autistic people’s experiences at universities have identified stigma and discrimination as a significant barrier facing autistic people in higher education. In this study, our team of autistic co-researchers and non-autistic researchers co-produced an in-depth qualitative study to understand the contexts and circumstances in which autistic people felt stigmatised or experienced discrimination at universities in Australia. We interviewed 21 autistic people who either had completed at least one university course, or were studying a university course, or had enrolled in but discontinued at least one university course in Australia. Using reflexive thematic analysis, we identified four themes: (1) ‘My disability is something that people just don’t have a clue about’, (2) ‘the system is really stacked against you’, (3) the onus is on autistic students, and (4) ‘grit and stubbornness’. Based on these findings, we suggested implementing Universal Design for Learning, neurodiversity-affirming and trauma-informed practices, together with a participatory approach to better design university curricula, processes, and support services for autistic students.Lay AbstractAutistic students experience many challenges at university. One significant barrier identified in past research was autistic students’ experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students’ experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university – some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) ‘My disability is something that people just don’t have a clue about’, (2) ‘the system is really stacked against you’, (3) the onus is on autistic students, and (4) ‘grit and stubbornness’. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs.
Autism, Ahead of Print.
In recent years, the number of autistic people entering university has increased in Australia and worldwide. While an encouraging trend, autistic students’ completion rates remain much lower than non-autistic students in Australia. Perhaps unsurprisingly, numerous studies investigating autistic people’s experiences at universities have identified stigma and discrimination as a significant barrier facing autistic people in higher education. In this study, our team of autistic co-researchers and non-autistic researchers co-produced an in-depth qualitative study to understand the contexts and circumstances in which autistic people felt stigmatised or experienced discrimination at universities in Australia. We interviewed 21 autistic people who either had completed at least one university course, or were studying a university course, or had enrolled in but discontinued at least one university course in Australia. Using reflexive thematic analysis, we identified four themes: (1) ‘My disability is something that people just don’t have a clue about’, (2) ‘the system is really stacked against you’, (3) the onus is on autistic students, and (4) ‘grit and stubbornness’. Based on these findings, we suggested implementing Universal Design for Learning, neurodiversity-affirming and trauma-informed practices, together with a participatory approach to better design university curricula, processes, and support services for autistic students.Lay AbstractAutistic students experience many challenges at university. One significant barrier identified in past research was autistic students’ experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students’ experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university – some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) ‘My disability is something that people just don’t have a clue about’, (2) ‘the system is really stacked against you’, (3) the onus is on autistic students, and (4) ‘grit and stubbornness’. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs.
Studies assessing domains pertaining to structural language in autism vary in reporting practices and approaches to assessment: A systematic review
- December 25, 2023
Autism, Ahead of Print.
Language in autism is heterogeneous, with a significant proportion of individuals having structural language difficulties and inclusion of language impairment as a specifier under Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria for autism. This systematic review asked: What are the reporting patterns of variables pertaining to structural language in autism prior to and after publication of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.)? What norm-referenced assessments does research use to characterize the language abilities of autistic individuals with respect to language impairment? This preregistered review (PROSPERO: CRD42021260394) followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Searches took place in September 2022 and included Linguistics and Language Behavior Abstracts, PsycINFO, PubMed, and the Directory of Open Access Journals. Search terms included three essential concepts: autism, language, and age. Two coders independently screened and evaluated articles. Searches yielded 57 qualifying studies, with mostly consistent reporting practices prior to and after the Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Studies varied in how they defined language groups and in what norm-referenced measures they used. Interpreting research on structural language in autism requires attention to diagnostic and grouping criteria. Although inconsistency in reporting in original studies limited this review, better understanding the available information on structural language in autistic individuals aged 3–21 years may support identification of language needs.Lay abstractUnder the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), language impairment can co-occur with autism. It is not yet clear how research defines, reports, and characterizes structural language abilities of autistic individuals eligible for school-based special education services (aged 3–21 years) in the United States. In the United States, students typically must be formally diagnosed to be eligible for services and supports. However, the quality of diagnosis is only as good as the research evidence on which diagnosis depends. To evaluate evidence quality, we examined how studies of school-aged autistic individuals report assessments of language ability. This systematic review included 57 studies using English language age-referenced assessments used to measure structural language. Findings showed many differences across studies in how language abilities were measured and reported. Also, none of the studies fully reported the variables relevant to characterizing language impairment. Outcomes were similar across versions of the Diagnostic and Statistical Manual of Mental Disorders. Findings indicate that researchers and clinicians should pay attention to reporting diagnostic and grouping criteria. Carefully interpreting research evidence is critical for ensuring that diagnostic criteria and supports are representative of and accessible to autistic individuals and relevant parties.
Autism, Ahead of Print.
Language in autism is heterogeneous, with a significant proportion of individuals having structural language difficulties and inclusion of language impairment as a specifier under Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria for autism. This systematic review asked: What are the reporting patterns of variables pertaining to structural language in autism prior to and after publication of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.)? What norm-referenced assessments does research use to characterize the language abilities of autistic individuals with respect to language impairment? This preregistered review (PROSPERO: CRD42021260394) followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Searches took place in September 2022 and included Linguistics and Language Behavior Abstracts, PsycINFO, PubMed, and the Directory of Open Access Journals. Search terms included three essential concepts: autism, language, and age. Two coders independently screened and evaluated articles. Searches yielded 57 qualifying studies, with mostly consistent reporting practices prior to and after the Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Studies varied in how they defined language groups and in what norm-referenced measures they used. Interpreting research on structural language in autism requires attention to diagnostic and grouping criteria. Although inconsistency in reporting in original studies limited this review, better understanding the available information on structural language in autistic individuals aged 3–21 years may support identification of language needs.Lay abstractUnder the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), language impairment can co-occur with autism. It is not yet clear how research defines, reports, and characterizes structural language abilities of autistic individuals eligible for school-based special education services (aged 3–21 years) in the United States. In the United States, students typically must be formally diagnosed to be eligible for services and supports. However, the quality of diagnosis is only as good as the research evidence on which diagnosis depends. To evaluate evidence quality, we examined how studies of school-aged autistic individuals report assessments of language ability. This systematic review included 57 studies using English language age-referenced assessments used to measure structural language. Findings showed many differences across studies in how language abilities were measured and reported. Also, none of the studies fully reported the variables relevant to characterizing language impairment. Outcomes were similar across versions of the Diagnostic and Statistical Manual of Mental Disorders. Findings indicate that researchers and clinicians should pay attention to reporting diagnostic and grouping criteria. Carefully interpreting research evidence is critical for ensuring that diagnostic criteria and supports are representative of and accessible to autistic individuals and relevant parties.
Evaluating measures to assess loneliness in autistic adults
- December 25, 2023
Autism, Ahead of Print.
Several measures have been developed to assess loneliness in the general population. Here, we examined if, and how accurately, widely-used measures capture the experience of loneliness in autistic adults. A total of 203 autistic participants from the UK completed an online survey, which included two widely-used loneliness questionnaires: the University of California, Los Angeles (UCLA) Loneliness Scale Version 3 and the Social and Emotional Loneliness Scale for Adults (SELSA). Participants completed the measures and provided their views on how well they captured their experiences of loneliness. A direct measure, asking participants how often they felt lonely, was also completed. Results demonstrated that scores on the UCLA and SELSA questionnaires positively correlated with the direct measure of loneliness, suggesting that these tools accurately index autistic experiences of loneliness. However, qualitative responses suggested that participants found both scales difficult to complete. Using reflexive thematic analysis, we identified three themes that encapsulated participants’ views: (1) failing to distinguish between the characteristics/experiences of loneliness and being autistic, (2) loneliness is not a static trait and (3) inappropriate wording. Given that our sample of autistic participants tended to prefer the UCLA scale to the SELSA, we provide initial recommendations around how the UCLA scale could be adapted for autistic adults.Lay abstractThere has been increasing interest in research on loneliness in autistic adults. Much of this research has involved giving autistic adults widely-used questionnaires that are thought to measure how lonely people are. However, these questionnaires have been developed for the general public. We do not know whether these questionnaires accurately measure how lonely autistic adults are. We asked 203 autistic adults to complete an online survey that included two widely-used loneliness questionnaires: (1) the University of California, Los Angeles (UCLA) Loneliness Scale Version 3 and (2) the Social and Emotional Loneliness Scale for Adults (SELSA). We also asked participants to rate how lonely they were from 1 (often/always) to 5 (never). Participants were then asked to give their views on the questionnaires (e.g. what they thought was good, and what they thought was not so good about them). We found that the scores on the UCLA scale and the SELSA aligned with participants’ ratings of how lonely they were, which suggests that these two questionnaires accurately measure loneliness in autistic people. However, our participants also identified several ways to improve the questionnaires. This included (1) better distinguishing the characteristics/experiences of loneliness from those of being autistic; (2) better reflecting how loneliness may change at different times and in different contexts and (3) making the phrasing of the questions clearer. Overall, our autistic participants tended to prefer the UCLA scale to the SELSA. Therefore, we present some recommendations about how the UCLA scale could be changed to be more suitable for autistic people.
Autism, Ahead of Print.
Several measures have been developed to assess loneliness in the general population. Here, we examined if, and how accurately, widely-used measures capture the experience of loneliness in autistic adults. A total of 203 autistic participants from the UK completed an online survey, which included two widely-used loneliness questionnaires: the University of California, Los Angeles (UCLA) Loneliness Scale Version 3 and the Social and Emotional Loneliness Scale for Adults (SELSA). Participants completed the measures and provided their views on how well they captured their experiences of loneliness. A direct measure, asking participants how often they felt lonely, was also completed. Results demonstrated that scores on the UCLA and SELSA questionnaires positively correlated with the direct measure of loneliness, suggesting that these tools accurately index autistic experiences of loneliness. However, qualitative responses suggested that participants found both scales difficult to complete. Using reflexive thematic analysis, we identified three themes that encapsulated participants’ views: (1) failing to distinguish between the characteristics/experiences of loneliness and being autistic, (2) loneliness is not a static trait and (3) inappropriate wording. Given that our sample of autistic participants tended to prefer the UCLA scale to the SELSA, we provide initial recommendations around how the UCLA scale could be adapted for autistic adults.Lay abstractThere has been increasing interest in research on loneliness in autistic adults. Much of this research has involved giving autistic adults widely-used questionnaires that are thought to measure how lonely people are. However, these questionnaires have been developed for the general public. We do not know whether these questionnaires accurately measure how lonely autistic adults are. We asked 203 autistic adults to complete an online survey that included two widely-used loneliness questionnaires: (1) the University of California, Los Angeles (UCLA) Loneliness Scale Version 3 and (2) the Social and Emotional Loneliness Scale for Adults (SELSA). We also asked participants to rate how lonely they were from 1 (often/always) to 5 (never). Participants were then asked to give their views on the questionnaires (e.g. what they thought was good, and what they thought was not so good about them). We found that the scores on the UCLA scale and the SELSA aligned with participants’ ratings of how lonely they were, which suggests that these two questionnaires accurately measure loneliness in autistic people. However, our participants also identified several ways to improve the questionnaires. This included (1) better distinguishing the characteristics/experiences of loneliness from those of being autistic; (2) better reflecting how loneliness may change at different times and in different contexts and (3) making the phrasing of the questions clearer. Overall, our autistic participants tended to prefer the UCLA scale to the SELSA. Therefore, we present some recommendations about how the UCLA scale could be changed to be more suitable for autistic people.
Short report: Effectiveness of a universal preschool-based program for emotional education in 3- to 5-year-old children with autism spectrum conditions
- December 12, 2023
Autism, Ahead of Print.
The “1,2,3,emoció!” is a universal preschool program of emotional education for children aged 3–5 years that has positive effect on emotional competence. The objective of this study was to evaluate the effectiveness of this program specifically in 3- to 5-year-old children with autism spectrum conditions. The effectiveness was evaluated during the first year of implementation (school year 2018–2019) in Barcelona. We conducted a cluster randomized community trial, with schools as units of randomization. The children’s level of emotional competence was evaluated with the validated Emotional Competence Assessment Questionnaire (score range from 30 to 180). We designed a linear regression model for paired measures. The dependent variable was the final Emotional Competence Assessment Questionnaire score adjusted by the initial score, sex, and grade. The sample consisted of 49 children with autism spectrum conditions, of which 11 were girls. Children in the intervention group showed an increase from the initial score to the final score that was almost three times higher (16.1) than the increase observed in children in the comparison group (6.6). The difference between the two groups was statistically significant, with 8.9 points (95% confidence interval: 1.2–16.6) attributed to the intervention. We conclude that the “1,2,3,emoció!” universal program has the potential to be effective in children with autism spectrum conditions.Lay abstractThere are numerous programs and interventions to improve social and emotional skills that expressly target children with autism spectrum conditions. However, there is less knowledge about the impact of universal (directed to all children) school programs of emotional education specifically on these children. In this context, the aim of our study was to evaluate the impact of the “1,2,3,emoció!” universal school program on them. The results show that children with autism spectrum conditions participating in the program improved their emotional competence more than the ones who did not participate. Therefore, we conclude that the “1,2,3,emoció!” universal program is effective in children with autism spectrum conditions. This promising outcome gives the opportunity to these children to benefit from group learning in an inclusive school setting, by complementing individual interventions with a universal program.
Autism, Ahead of Print.
The “1,2,3,emoció!” is a universal preschool program of emotional education for children aged 3–5 years that has positive effect on emotional competence. The objective of this study was to evaluate the effectiveness of this program specifically in 3- to 5-year-old children with autism spectrum conditions. The effectiveness was evaluated during the first year of implementation (school year 2018–2019) in Barcelona. We conducted a cluster randomized community trial, with schools as units of randomization. The children’s level of emotional competence was evaluated with the validated Emotional Competence Assessment Questionnaire (score range from 30 to 180). We designed a linear regression model for paired measures. The dependent variable was the final Emotional Competence Assessment Questionnaire score adjusted by the initial score, sex, and grade. The sample consisted of 49 children with autism spectrum conditions, of which 11 were girls. Children in the intervention group showed an increase from the initial score to the final score that was almost three times higher (16.1) than the increase observed in children in the comparison group (6.6). The difference between the two groups was statistically significant, with 8.9 points (95% confidence interval: 1.2–16.6) attributed to the intervention. We conclude that the “1,2,3,emoció!” universal program has the potential to be effective in children with autism spectrum conditions.Lay abstractThere are numerous programs and interventions to improve social and emotional skills that expressly target children with autism spectrum conditions. However, there is less knowledge about the impact of universal (directed to all children) school programs of emotional education specifically on these children. In this context, the aim of our study was to evaluate the impact of the “1,2,3,emoció!” universal school program on them. The results show that children with autism spectrum conditions participating in the program improved their emotional competence more than the ones who did not participate. Therefore, we conclude that the “1,2,3,emoció!” universal program is effective in children with autism spectrum conditions. This promising outcome gives the opportunity to these children to benefit from group learning in an inclusive school setting, by complementing individual interventions with a universal program.
Provider perspectives on equity in use of mobile health autism screening tools
- December 11, 2023
Autism, Ahead of Print.
Mobile health (mHealth) screening tools for autism are gaining in prevalence, and have benefits such as video content and direct resources linkage. However, it is unclear whether such tools will ameliorate autism inequities or will help only those already advantaged in autism care. To investigate this issue, we conducted semi-structured qualitative interviews with 18 primary care and Early Intervention/Early Childhood Special Education providers in six US states. Providers were given hypothetical scenarios in which a family presents to care with results from one of 9 mHealth autism screening tools. Providers discussed their clinical approach and assessed the tool’s fit with their patient/client population. Each transcript was audio-recorded, transcribed, and coded; a phenomenological approach was used to develop key themes. 4 themes and 18 subthemes emerged. These included Clinical and business factors (e.g. scope of practice concerns and clinical efficiency), Validity and trustworthiness (e.g. familiarity, data privacy/security), Family interaction quality (e.g. supporting family advocacy, provision of information, affecting family anxiety, and emotional support), and Accessibility (e.g. English proficiency/language issues, cultural inclusivity, and literacy/educational level). Providers suggested modifications to enhance equity, such as portraying diverse families, reducing the reading level of text, and making tools shorter to better fit clinical context.Lay AbstractFamilies may find information about autism online, and health care and education providers may use online tools to screen for autism. However, we do not know if online autism screening tools are easily used by families and providers. We interviewed primary care and educational providers, asking them to review results from online tools that screen for autism. Providers had concerns about how usable and accessible these tools are for diverse families and suggested changes to make tools easier to use.
Autism, Ahead of Print.
Mobile health (mHealth) screening tools for autism are gaining in prevalence, and have benefits such as video content and direct resources linkage. However, it is unclear whether such tools will ameliorate autism inequities or will help only those already advantaged in autism care. To investigate this issue, we conducted semi-structured qualitative interviews with 18 primary care and Early Intervention/Early Childhood Special Education providers in six US states. Providers were given hypothetical scenarios in which a family presents to care with results from one of 9 mHealth autism screening tools. Providers discussed their clinical approach and assessed the tool’s fit with their patient/client population. Each transcript was audio-recorded, transcribed, and coded; a phenomenological approach was used to develop key themes. 4 themes and 18 subthemes emerged. These included Clinical and business factors (e.g. scope of practice concerns and clinical efficiency), Validity and trustworthiness (e.g. familiarity, data privacy/security), Family interaction quality (e.g. supporting family advocacy, provision of information, affecting family anxiety, and emotional support), and Accessibility (e.g. English proficiency/language issues, cultural inclusivity, and literacy/educational level). Providers suggested modifications to enhance equity, such as portraying diverse families, reducing the reading level of text, and making tools shorter to better fit clinical context.Lay AbstractFamilies may find information about autism online, and health care and education providers may use online tools to screen for autism. However, we do not know if online autism screening tools are easily used by families and providers. We interviewed primary care and educational providers, asking them to review results from online tools that screen for autism. Providers had concerns about how usable and accessible these tools are for diverse families and suggested changes to make tools easier to use.
Evaluating a new supported employment internship programme for autistic young adults without intellectual disability
- November 28, 2023
Autism, Ahead of Print.
Supported employment initiatives have been shown to increase employment rates for autistic people who want to enter the workforce. Despite the success of supported employment initiatives in increasing employment rates, little is known about the first-hand experiences and views of those involved. In the current study, we examined the experiences and views of autistic young adults without intellectual disability (‘interns’), employers and parents regarding a previously unevaluated paid internship scheme that offers tailored support for interns and employers before, during and after the internship, the Employ Autism network. In total, 51 participants (19 interns, 22 employers, 10 parents), across eight internships, engaged in semi-structured interviews. Reflexive thematic analysis was used to identify three themes, shared across participant groups: (1) the internship was ‘an invaluable experience’, (2) the internship helped break down autism-specific barriers to employment and (3) stakeholder groups had some unmet expectations. Drawing on this multi-informant qualitative evaluation of a novel supported employment scheme, we derive recommendations of best practice for supported employment initiatives for autistic young adults without intellectual disability.Lay abstractInternships designed for autistic people can help them to find employment, but there is little research about the experiences of those involved with internship schemes. To learn more about a new paid internship scheme in the United Kingdom, the Employ Autism network, we interviewed 19 interns, who were autistic young adults without intellectual disability taking part in one of eight different internships. We also interviewed 22 employers (who worked with the interns), and 10 parents (who supported their children in the internship). The interns, employers and parents told us that the Employ Autism network was a valuable experience that helped the interns become more confident. Also, the parents said it helped the interns become more independent. All the groups said the Employ Autism network removed common barriers to employment, and interns and parents said it would help interns get a job in future. Employers and interns said they understood each other better during the internship, and employers said the internship made them think about how their organisations might have accidentally had barriers in place that could stop autistic people getting employed (barriers that they wanted to address in future). However, all groups said some expectations of the internship were not met. These findings suggest the Employ Autism network is helpful for autistic young adults without intellectual disability and employers, but that there are ways that the internships could be improved in future. We discuss the lessons we can learn from the Employ Autism network that might help others who are thinking about setting up, or getting involved in, similar internship schemes.
Autism, Ahead of Print.
Supported employment initiatives have been shown to increase employment rates for autistic people who want to enter the workforce. Despite the success of supported employment initiatives in increasing employment rates, little is known about the first-hand experiences and views of those involved. In the current study, we examined the experiences and views of autistic young adults without intellectual disability (‘interns’), employers and parents regarding a previously unevaluated paid internship scheme that offers tailored support for interns and employers before, during and after the internship, the Employ Autism network. In total, 51 participants (19 interns, 22 employers, 10 parents), across eight internships, engaged in semi-structured interviews. Reflexive thematic analysis was used to identify three themes, shared across participant groups: (1) the internship was ‘an invaluable experience’, (2) the internship helped break down autism-specific barriers to employment and (3) stakeholder groups had some unmet expectations. Drawing on this multi-informant qualitative evaluation of a novel supported employment scheme, we derive recommendations of best practice for supported employment initiatives for autistic young adults without intellectual disability.Lay abstractInternships designed for autistic people can help them to find employment, but there is little research about the experiences of those involved with internship schemes. To learn more about a new paid internship scheme in the United Kingdom, the Employ Autism network, we interviewed 19 interns, who were autistic young adults without intellectual disability taking part in one of eight different internships. We also interviewed 22 employers (who worked with the interns), and 10 parents (who supported their children in the internship). The interns, employers and parents told us that the Employ Autism network was a valuable experience that helped the interns become more confident. Also, the parents said it helped the interns become more independent. All the groups said the Employ Autism network removed common barriers to employment, and interns and parents said it would help interns get a job in future. Employers and interns said they understood each other better during the internship, and employers said the internship made them think about how their organisations might have accidentally had barriers in place that could stop autistic people getting employed (barriers that they wanted to address in future). However, all groups said some expectations of the internship were not met. These findings suggest the Employ Autism network is helpful for autistic young adults without intellectual disability and employers, but that there are ways that the internships could be improved in future. We discuss the lessons we can learn from the Employ Autism network that might help others who are thinking about setting up, or getting involved in, similar internship schemes.
Social motor synchrony in autism spectrum conditions: A systematic review
- November 28, 2023
Autism, Ahead of Print.
Some researchers suggest difficulties synchronising with a partner could underpin the social differences associated with Autism Spectrum Condition, potentially acting as a marker for autism. Social Motor Synchrony (SMS) is one aspect of synchrony that could augment observational diagnostic procedures. However, the full breadth of literature examining SMS in autism has not been systematically reviewed. A systematic review following the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines yielded 29 papers meeting inclusion criteria. Of 21 studies including a comparison group, all indicated weaker SMS between two autistic partners and in mixed-neurotype partnerships compared with two non-autistic partners. Papers involving mixed-neurotype pairs without a comparison group showed higher than chance SMS and demonstrated an increase in SMS over time following rhythm-based interventions. Although research so far demonstrates weaker SMS in pairs involving an autistic partner compared with non-autistic pairs, we identified several limitations which may have influenced SMS in autistic people and their partners. Further work is needed with autistic partnerships, more natural and preferred tasks within comfortable settings and partnerships, and more work to identify the basis of synchrony differences. We set out implications for design of further research.Lay abstractWhen two people interact, they often fall into sync with one another by moving their bodies at the same time. Some say autistic people are not as good as non-autistic people at moving at the same time as a partner. This has led some researchers to ask whether measuring synchrony might help diagnose autism. We reviewed the research so far to look at differences in Social Motor Synchrony (SMS) (the way we move together) between autistic people and people they interact with. The research suggests that interactions involving an autistic partner (either two autistic partners, or an autistic and non-autistic partner) show lower synchrony than a non-autistic pair. However, we recognised elements in the research so far that may have affected SMS in interactions involving an autistic person. One way SMS may have been affected in research so far might be the way interactions have been set up in the research studies. Few papers studied interactions between two autistic people or looked at synchrony in comfortable environments with autistic-preferred tasks. The studies also do not explain why synchrony might be different, or weaker, in pairs involving autistic partners. We use these limitations to suggest improvements for future research.
Autism, Ahead of Print.
Some researchers suggest difficulties synchronising with a partner could underpin the social differences associated with Autism Spectrum Condition, potentially acting as a marker for autism. Social Motor Synchrony (SMS) is one aspect of synchrony that could augment observational diagnostic procedures. However, the full breadth of literature examining SMS in autism has not been systematically reviewed. A systematic review following the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines yielded 29 papers meeting inclusion criteria. Of 21 studies including a comparison group, all indicated weaker SMS between two autistic partners and in mixed-neurotype partnerships compared with two non-autistic partners. Papers involving mixed-neurotype pairs without a comparison group showed higher than chance SMS and demonstrated an increase in SMS over time following rhythm-based interventions. Although research so far demonstrates weaker SMS in pairs involving an autistic partner compared with non-autistic pairs, we identified several limitations which may have influenced SMS in autistic people and their partners. Further work is needed with autistic partnerships, more natural and preferred tasks within comfortable settings and partnerships, and more work to identify the basis of synchrony differences. We set out implications for design of further research.Lay abstractWhen two people interact, they often fall into sync with one another by moving their bodies at the same time. Some say autistic people are not as good as non-autistic people at moving at the same time as a partner. This has led some researchers to ask whether measuring synchrony might help diagnose autism. We reviewed the research so far to look at differences in Social Motor Synchrony (SMS) (the way we move together) between autistic people and people they interact with. The research suggests that interactions involving an autistic partner (either two autistic partners, or an autistic and non-autistic partner) show lower synchrony than a non-autistic pair. However, we recognised elements in the research so far that may have affected SMS in interactions involving an autistic person. One way SMS may have been affected in research so far might be the way interactions have been set up in the research studies. Few papers studied interactions between two autistic people or looked at synchrony in comfortable environments with autistic-preferred tasks. The studies also do not explain why synchrony might be different, or weaker, in pairs involving autistic partners. We use these limitations to suggest improvements for future research.
Community-guided, autism-adapted group cognitive behavioral therapy for depression in autistic youth (CBT-DAY): Preliminary feasibility, acceptability, and efficacy
- November 27, 2023
Autism, Ahead of Print.
This study examined the preliminary feasibility, acceptability, and efficacy of an autism-adapted cognitive behavioral therapy for depression in autistic youth, CBT-DAY. Twenty-four autistic youth (11–17 years old) participated in the pilot non-randomized trial including 5 cisgender females, 14 cisgender males, and 5 non-binary youth. Youth participated in 12 weeks of, CBT-DAY and youth depressive symptoms (i.e., primary clinical outcome) and emotional reactivity and self-esteem (i.e., intervention mechanisms) were assessed through self-report and caregiver report at four timepoints: baseline (week 0), midpoint (week 6), post-treatment (week 12), and follow-up (week 24). Results suggested that CBT-DAY may be feasible (16.67% attrition) in an outpatient setting and acceptable to adolescents and their caregivers. Bayesian linear mixed-effects models showed that CBT-DAY may be efficacious in targeting emotional reactivity [βT1-T3 = −2.53, CrI95% (−4.62, −0.58), Pd = 0.995, d = −0.35] and self-esteem [βT1-T3 = −3.57, CrI95% (−5.17, −2.00), Pd > 0.999, d = −0.47], as well as youth depressive symptom severity [β = −2.72, CrI95% (−3.85, −1.63), Pd > 0.999]. Treatment gains were maintained at follow-up. A cognitive behavioral group therapy designed for and with autistic people demonstrates promise in targeting emotional reactivity and self-esteem to improve depressive symptom severity in youth. Findings can be leveraged to implement larger, more controlled trials of CBT-DAY. The trial was registered at Clinicaltrials.gov (Identifier: NCT05430022; https://beta.clinicaltrials.gov/study/NCT05430022).Lay AbstractDepression in youth is a significant public health problem worldwide, particularly for autistic youth who are over twice as likely to experience depression than their non-autistic peers. Although pathways to depression are complex, emotional reactivity and negative self-esteem are two risk factors for depression in autistic and non-autistic youth. Although autistic youth are more likely to experience depression than their non-autistic peers, psychotherapy options for autistic youth are very limited; community guidance in the development and testing of psychotherapy programs is a promising approach in autism. Therefore, in this study, we designed an autism-adapted CBT-DAY, in collaboration with autistic community members. Specifically, CBT-DAY combined neurodiversity-affirming and cognitive behavioral approaches to target emotional reactivity and self-esteem in youth to improve depressive symptom severity in a group setting across 12 weeks. We examined the preliminary feasibility, acceptability, and efficacy of CBT-DAY in a pilot non-randomized trial. In addition, we implemented a rigorous protocol for assessing, monitoring, and addressing potential harms in this intervention. Results from 24 autistic youth (11–17 years old) suggest that CBT-DAY may be feasible to use in an outpatient clinical setting and generally acceptable to youth and their caregivers. Participation in CBT-DAY may be associated with significant improvements in youth emotional reactivity and self-esteem, as well as depressive symptom severity per self-report only. Exploratory analyses showed that participation in CBT-DAY may also be associated with significant improvements in internalizing symptoms. Findings demonstrate the potential promise of neurodiversity-affirming and cognitive behavioral approaches to treating depressive symptoms in some autistic youth.
Autism, Ahead of Print.
This study examined the preliminary feasibility, acceptability, and efficacy of an autism-adapted cognitive behavioral therapy for depression in autistic youth, CBT-DAY. Twenty-four autistic youth (11–17 years old) participated in the pilot non-randomized trial including 5 cisgender females, 14 cisgender males, and 5 non-binary youth. Youth participated in 12 weeks of, CBT-DAY and youth depressive symptoms (i.e., primary clinical outcome) and emotional reactivity and self-esteem (i.e., intervention mechanisms) were assessed through self-report and caregiver report at four timepoints: baseline (week 0), midpoint (week 6), post-treatment (week 12), and follow-up (week 24). Results suggested that CBT-DAY may be feasible (16.67% attrition) in an outpatient setting and acceptable to adolescents and their caregivers. Bayesian linear mixed-effects models showed that CBT-DAY may be efficacious in targeting emotional reactivity [βT1-T3 = −2.53, CrI95% (−4.62, −0.58), Pd = 0.995, d = −0.35] and self-esteem [βT1-T3 = −3.57, CrI95% (−5.17, −2.00), Pd > 0.999, d = −0.47], as well as youth depressive symptom severity [β = −2.72, CrI95% (−3.85, −1.63), Pd > 0.999]. Treatment gains were maintained at follow-up. A cognitive behavioral group therapy designed for and with autistic people demonstrates promise in targeting emotional reactivity and self-esteem to improve depressive symptom severity in youth. Findings can be leveraged to implement larger, more controlled trials of CBT-DAY. The trial was registered at Clinicaltrials.gov (Identifier: NCT05430022; https://beta.clinicaltrials.gov/study/NCT05430022).Lay AbstractDepression in youth is a significant public health problem worldwide, particularly for autistic youth who are over twice as likely to experience depression than their non-autistic peers. Although pathways to depression are complex, emotional reactivity and negative self-esteem are two risk factors for depression in autistic and non-autistic youth. Although autistic youth are more likely to experience depression than their non-autistic peers, psychotherapy options for autistic youth are very limited; community guidance in the development and testing of psychotherapy programs is a promising approach in autism. Therefore, in this study, we designed an autism-adapted CBT-DAY, in collaboration with autistic community members. Specifically, CBT-DAY combined neurodiversity-affirming and cognitive behavioral approaches to target emotional reactivity and self-esteem in youth to improve depressive symptom severity in a group setting across 12 weeks. We examined the preliminary feasibility, acceptability, and efficacy of CBT-DAY in a pilot non-randomized trial. In addition, we implemented a rigorous protocol for assessing, monitoring, and addressing potential harms in this intervention. Results from 24 autistic youth (11–17 years old) suggest that CBT-DAY may be feasible to use in an outpatient clinical setting and generally acceptable to youth and their caregivers. Participation in CBT-DAY may be associated with significant improvements in youth emotional reactivity and self-esteem, as well as depressive symptom severity per self-report only. Exploratory analyses showed that participation in CBT-DAY may also be associated with significant improvements in internalizing symptoms. Findings demonstrate the potential promise of neurodiversity-affirming and cognitive behavioral approaches to treating depressive symptoms in some autistic youth.
Characterizing mechanisms of caregiver-mediated naturalistic developmental behavioral interventions for autistic toddlers: A randomized clinical trial
- November 25, 2023
Autism, Ahead of Print.
To address the variability of naturalistic developmental behavioral intervention outcomes, the current study sought to isolate the effects of the instructional strategies of caregiver-mediated naturalistic developmental behavioral interventions. In this comparative efficacy trial, mothers of 111 autistic children (18–48 months) were randomized to learn one of two sets of naturalistic developmental behavioral intervention language facilitation strategies (responsive or directive). We aimed to characterize the effect of strategy type on language outcomes and explore the extent to which joint engagement outcomes mediated language outcomes. Children in the directive condition had significantly greater scores across multiple language assessments. At follow-up, the effect of strategy type on the frequency of spontaneous directed communication acts was fully mediated by coordinated joint engagement (indirect effect = −2.070, 95% CI = [−4.394, −0.06], p < 0.05). Thus, children may benefit from caregiver prompts to facilitate long-term language outcomes. The current study is an initial step in the identification of the mechanisms of caregiver-mediated NDBIs.Lay abstractCaregiver-mediated early interventions support caregivers’ use of strategies to improve their young autistic child’s communication. In the current clinical trial, we sought to isolate the most effective strategies to improve short-term and long-term child communication outcomes. Results demonstrated how children may benefit from caregiver prompts to facilitate long-term language outcomes. In conclusion, the current study improves our understanding of how early intervention facilitates child communication outcomes.
Autism, Ahead of Print.
To address the variability of naturalistic developmental behavioral intervention outcomes, the current study sought to isolate the effects of the instructional strategies of caregiver-mediated naturalistic developmental behavioral interventions. In this comparative efficacy trial, mothers of 111 autistic children (18–48 months) were randomized to learn one of two sets of naturalistic developmental behavioral intervention language facilitation strategies (responsive or directive). We aimed to characterize the effect of strategy type on language outcomes and explore the extent to which joint engagement outcomes mediated language outcomes. Children in the directive condition had significantly greater scores across multiple language assessments. At follow-up, the effect of strategy type on the frequency of spontaneous directed communication acts was fully mediated by coordinated joint engagement (indirect effect = −2.070, 95% CI = [−4.394, −0.06], p < 0.05). Thus, children may benefit from caregiver prompts to facilitate long-term language outcomes. The current study is an initial step in the identification of the mechanisms of caregiver-mediated NDBIs.Lay abstractCaregiver-mediated early interventions support caregivers’ use of strategies to improve their young autistic child’s communication. In the current clinical trial, we sought to isolate the most effective strategies to improve short-term and long-term child communication outcomes. Results demonstrated how children may benefit from caregiver prompts to facilitate long-term language outcomes. In conclusion, the current study improves our understanding of how early intervention facilitates child communication outcomes.
Autistic young people adaptively use gaze to facilitate joint attention during multi-gestural dyadic interactions
- November 25, 2023
Autism, Ahead of Print.
Autistic people often experience difficulties navigating face-to-face social interactions. Historically, the empirical literature has characterised these difficulties as cognitive ‘deficits’ in social information processing. However, the empirical basis for such claims is lacking, with most studies failing to capture the complexity of social interactions, often distilling them into singular communicative modalities (e.g. gaze-based communication) that are rarely used in isolation in daily interactions. The current study examined how gaze was used in concert with communicative hand gestures during joint attention interactions. We employed an immersive virtual reality paradigm, where autistic (n = 22) and non-autistic (n = 22) young people completed a collaborative task with a non-autistic confederate. Integrated eye-, head- and hand-motion-tracking enabled dyads to communicate naturally with each other while offering objective measures of attention and behaviour. Autistic people in our sample were similarly, if not more, effective in responding to hand-cued joint attention bids compared with non-autistic people. Moreover, both autistic and non-autistic people demonstrated an ability to adaptively use gaze information to aid coordination. Our findings suggest that the intersecting fields of autism and social neuroscience research may have overstated the role of eye gaze during coordinated social interactions.Lay abstractAutistic people have been said to have ‘problems’ with joint attention, that is, looking where someone else is looking. Past studies of joint attention have used tasks that require autistic people to continuously look at and respond to eye-gaze cues. But joint attention can also be done using other social cues, like pointing. This study looked at whether autistic and non-autistic young people use another person’s eye gaze during joint attention in a task that did not require them to look at their partner’s face. In the task, each participant worked together with their partner to find a computer-generated object in virtual reality. Sometimes the participant had to help guide their partner to the object, and other times, they followed their partner’s lead. Participants were told to point to guide one another but were not told to use eye gaze. Both autistic and non-autistic participants often looked at their partner’s face during joint attention interactions and were faster to respond to their partner’s hand-pointing when the partner also looked at the object before pointing. This shows that autistic people can and do use information from another person’s eyes, even when they don’t have to. It is possible that, by not forcing autistic young people to look at their partner’s face and eyes, they were better able to gather information from their partner’s face when needed, without being overwhelmed. This shows how important it is to design tasks that provide autistic people with opportunities to show what they can do.
Autism, Ahead of Print.
Autistic people often experience difficulties navigating face-to-face social interactions. Historically, the empirical literature has characterised these difficulties as cognitive ‘deficits’ in social information processing. However, the empirical basis for such claims is lacking, with most studies failing to capture the complexity of social interactions, often distilling them into singular communicative modalities (e.g. gaze-based communication) that are rarely used in isolation in daily interactions. The current study examined how gaze was used in concert with communicative hand gestures during joint attention interactions. We employed an immersive virtual reality paradigm, where autistic (n = 22) and non-autistic (n = 22) young people completed a collaborative task with a non-autistic confederate. Integrated eye-, head- and hand-motion-tracking enabled dyads to communicate naturally with each other while offering objective measures of attention and behaviour. Autistic people in our sample were similarly, if not more, effective in responding to hand-cued joint attention bids compared with non-autistic people. Moreover, both autistic and non-autistic people demonstrated an ability to adaptively use gaze information to aid coordination. Our findings suggest that the intersecting fields of autism and social neuroscience research may have overstated the role of eye gaze during coordinated social interactions.Lay abstractAutistic people have been said to have ‘problems’ with joint attention, that is, looking where someone else is looking. Past studies of joint attention have used tasks that require autistic people to continuously look at and respond to eye-gaze cues. But joint attention can also be done using other social cues, like pointing. This study looked at whether autistic and non-autistic young people use another person’s eye gaze during joint attention in a task that did not require them to look at their partner’s face. In the task, each participant worked together with their partner to find a computer-generated object in virtual reality. Sometimes the participant had to help guide their partner to the object, and other times, they followed their partner’s lead. Participants were told to point to guide one another but were not told to use eye gaze. Both autistic and non-autistic participants often looked at their partner’s face during joint attention interactions and were faster to respond to their partner’s hand-pointing when the partner also looked at the object before pointing. This shows that autistic people can and do use information from another person’s eyes, even when they don’t have to. It is possible that, by not forcing autistic young people to look at their partner’s face and eyes, they were better able to gather information from their partner’s face when needed, without being overwhelmed. This shows how important it is to design tasks that provide autistic people with opportunities to show what they can do.
‘I’m not just being difficult . . . I’m finding it difficult’: A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child
- November 24, 2023
Autism, Ahead of Print.
The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents’ interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage.Lay abstractBecoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative.
Autism, Ahead of Print.
The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents’ interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage.Lay abstractBecoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative.
Mindreading beliefs in same- and cross-neurotype interactions
- November 18, 2023
Autism, Ahead of Print.
A large sample of autistic and non-autistic adults was recruited to investigate whether self-reported beliefs about their own and other people’s mindreading abilities were in line with either mindreading deficit accounts of autism or the double empathy problem (DEP) (which proposes mindreading difficulties are relational in autism). Three hundred and forty-eight (139 autistic) participants completed an online questionnaire which asked about autism identification and diagnostic status and their beliefs about their own mindreading abilities in relation to autistic and non-autistic others, and about autistic and non-autistic others’ abilities to read their (the participant’s) own minds. While autistic participants did report weaker mindreading abilities, this was only true in relation to non-autistic others. Both groups reported better mindreading abilities in same- than other-neurotype interactions, with autistic participants reporting mindreading abilities commensurate with non-autistic participants in relation to autistic targets. The same pattern was found when participants were asked about other people’s mindreading abilities. The findings were more consistent with the DEP than deficit theories, as the target reference group strongly impacted participants’ perceived mindreading abilities. While self-reported beliefs do not necessarily reflect actual mindreading abilities, they may still have important consequences for intergroup relations and social outcomes for autistic people.Lay AbstractAutistic people are often characterised as having problems with mindreading, which refers to understanding other people’s thoughts, beliefs and feelings. However, it has recently been suggested that mindreading difficulties may be a two-way issue between autistic and non-autistic people. This would imply that autistic people may not have difficulty reading the minds of other autistic people, whereas non-autistic people may struggle to read autistic people effectively. In this study, we created a survey in which we asked a relatively large sample of autistic and non-autistic people to rate their own and others’ mindreading abilities in relation to autistic and non-autistic others, respectively. Both groups believed that they were better at reading others in their own group than the other group. The autistic respondents reported levels of mindreading skill at least commensurate with the non-autistic respondents when the mind to be read was specified as autistic. Thus, both groups of participants’ responses were consistent with the notion that mindreading abilities are relational. Although self-reports are subjective, such beliefs could have important consequences for well-being and intergroup relations.
Autism, Ahead of Print.
A large sample of autistic and non-autistic adults was recruited to investigate whether self-reported beliefs about their own and other people’s mindreading abilities were in line with either mindreading deficit accounts of autism or the double empathy problem (DEP) (which proposes mindreading difficulties are relational in autism). Three hundred and forty-eight (139 autistic) participants completed an online questionnaire which asked about autism identification and diagnostic status and their beliefs about their own mindreading abilities in relation to autistic and non-autistic others, and about autistic and non-autistic others’ abilities to read their (the participant’s) own minds. While autistic participants did report weaker mindreading abilities, this was only true in relation to non-autistic others. Both groups reported better mindreading abilities in same- than other-neurotype interactions, with autistic participants reporting mindreading abilities commensurate with non-autistic participants in relation to autistic targets. The same pattern was found when participants were asked about other people’s mindreading abilities. The findings were more consistent with the DEP than deficit theories, as the target reference group strongly impacted participants’ perceived mindreading abilities. While self-reported beliefs do not necessarily reflect actual mindreading abilities, they may still have important consequences for intergroup relations and social outcomes for autistic people.Lay AbstractAutistic people are often characterised as having problems with mindreading, which refers to understanding other people’s thoughts, beliefs and feelings. However, it has recently been suggested that mindreading difficulties may be a two-way issue between autistic and non-autistic people. This would imply that autistic people may not have difficulty reading the minds of other autistic people, whereas non-autistic people may struggle to read autistic people effectively. In this study, we created a survey in which we asked a relatively large sample of autistic and non-autistic people to rate their own and others’ mindreading abilities in relation to autistic and non-autistic others, respectively. Both groups believed that they were better at reading others in their own group than the other group. The autistic respondents reported levels of mindreading skill at least commensurate with the non-autistic respondents when the mind to be read was specified as autistic. Thus, both groups of participants’ responses were consistent with the notion that mindreading abilities are relational. Although self-reports are subjective, such beliefs could have important consequences for well-being and intergroup relations.
Short report: Evaluation of wider community support for a neurodiversity teaching programme designed using participatory methods
- November 09, 2023
Autism, Ahead of Print.
Children with neurodevelopmental diagnoses often experience discrimination from their peers at school. This may result from a lack of understanding, and intolerance of differences in their thinking, communication and social interactions. Learning About Neurodiversity at School (LEANS) is a teaching programme designed to educate primary school children about the concept of neurodiversity. The LEANS programme was created by a neurodiverse team, using participatory methods. In the current study, we evaluated whether the wider neurodiverse community endorsed the planned design generated by our participatory approach. Respondents (n = 111) rated their support for key elements of the planned LEANS content, via an online survey. Participants were majority neurodivergent (70%), 98% of whom reported moderate-to-high familiarity with neurodiversity concepts. Over 90% of respondents expressed support for the planned content presented, and 73% of respondents endorsed the draft neurodiversity definition provided. A small number of respondents provided open-ended comments giving further detail on their views. Overall, the LEANS programme plan received a high level of support from this independent, neurodiversity-aware sample – demonstrating the potential of small-group participatory methods to generate wider community support. The completed resource is now available as a free online download.Lay abstractChildren with diagnoses such as autism, attention-deficit/hyperactivity disorder (ADHD), dyslexia and so on often experience bullying at school. This group can be described as neurodivergent, meaning they think and process information differently from most people. Previous research suggests that increasing people’s knowledge can be an effective way to reduce stigma and bullying. Therefore, we decided to create a primary school resource to teach about neurodiversity – the concept that all humans vary in how our brains work. Working with educators, our research team – which included neurodivergent people – developed plans for a teaching programme called Learning About Neurodiversity at School (LEANS). Next, we wanted to know whether these plans, developed by our small neurodiverse team, would be endorsed by the wider community. To find out, we conducted an online feedback survey about our plans for the resource. We analysed feedback from 111 people who participated. Most of them identified as neurodivergent (70%) and reported being familiar with neurodiversity (98%), meaning they could provide an informed opinion on our plans. Over 90% of people expressed support for the planned programme content described in the survey, and 73% of them approved our intended definition of the resource’s core concept, neurodiversity. From these results, we concluded that there was a high level of support for the planned LEANS programme content across those from the wider community who completed the survey. Consequently, we continued developing the LEANS programme in line with the initial plans from our neurodiverse team. The completed resource is now available as a free download.
Autism, Ahead of Print.
Children with neurodevelopmental diagnoses often experience discrimination from their peers at school. This may result from a lack of understanding, and intolerance of differences in their thinking, communication and social interactions. Learning About Neurodiversity at School (LEANS) is a teaching programme designed to educate primary school children about the concept of neurodiversity. The LEANS programme was created by a neurodiverse team, using participatory methods. In the current study, we evaluated whether the wider neurodiverse community endorsed the planned design generated by our participatory approach. Respondents (n = 111) rated their support for key elements of the planned LEANS content, via an online survey. Participants were majority neurodivergent (70%), 98% of whom reported moderate-to-high familiarity with neurodiversity concepts. Over 90% of respondents expressed support for the planned content presented, and 73% of respondents endorsed the draft neurodiversity definition provided. A small number of respondents provided open-ended comments giving further detail on their views. Overall, the LEANS programme plan received a high level of support from this independent, neurodiversity-aware sample – demonstrating the potential of small-group participatory methods to generate wider community support. The completed resource is now available as a free online download.Lay abstractChildren with diagnoses such as autism, attention-deficit/hyperactivity disorder (ADHD), dyslexia and so on often experience bullying at school. This group can be described as neurodivergent, meaning they think and process information differently from most people. Previous research suggests that increasing people’s knowledge can be an effective way to reduce stigma and bullying. Therefore, we decided to create a primary school resource to teach about neurodiversity – the concept that all humans vary in how our brains work. Working with educators, our research team – which included neurodivergent people – developed plans for a teaching programme called Learning About Neurodiversity at School (LEANS). Next, we wanted to know whether these plans, developed by our small neurodiverse team, would be endorsed by the wider community. To find out, we conducted an online feedback survey about our plans for the resource. We analysed feedback from 111 people who participated. Most of them identified as neurodivergent (70%) and reported being familiar with neurodiversity (98%), meaning they could provide an informed opinion on our plans. Over 90% of people expressed support for the planned programme content described in the survey, and 73% of them approved our intended definition of the resource’s core concept, neurodiversity. From these results, we concluded that there was a high level of support for the planned LEANS programme content across those from the wider community who completed the survey. Consequently, we continued developing the LEANS programme in line with the initial plans from our neurodiverse team. The completed resource is now available as a free download.
Toward a strengths-based model for designing virtual reality learning experiences for autistic users
- November 08, 2023
Autism, Ahead of Print.
This study presents a strengths-based framework for designing virtual reality experiences tailored to the needs and abilities of autistic individuals. Recognizing the potential of virtual reality to provide engaging and immersive learning environments, the framework aligns the strengths and preferences of autistic users with the affordances of virtual reality platforms. Drawing on the existing literature and empirical findings, the framework highlights key areas of alignment, including visual perception, anxiety management, attention to differences, concrete thinking, and response to positive feedback. The framework emphasizes the importance of involving autistic individuals in the co-design and co-creation of virtual reality technologies to ensure a more tailored and preferred user experience. By adopting a strengths-based approach and actively involving autistic individuals, the design and implementation of virtual reality interventions can better address their unique needs and foster positive outcomes. The study concludes by advocating for continued research and collaboration to advance the field of virtual reality technology for autistic individuals and to work toward shared goals with the autistic community.Lay abstractVirtual reality has been studied for its potential in supporting individuals with autism, but existing research often focuses on deficits and lacks consideration of individual preferences and strengths. This article introduces a framework that emphasizes the strengths and abilities of autistic individuals when designing virtual reality interventions. It builds upon an existing taxonomy of educational technology affordances and extends it to align with the unique needs of autistic individuals. The framework provides guidance for incorporating virtual reality technology that supports and amplifies autistic strengths, such as visual perception and response to positive feedback. The framework has implications for practice, research, and policy. For practitioners, it offers a tool for designing virtual reality experiences that cater to the strengths of autistic individuals, enhancing engagement and educational outcomes. Researchers can utilize the framework to guide the development of user-centered virtual reality interventions and expand our understanding of the potential benefits of virtual reality for autistic populations. Policymakers and educators can consider this framework when incorporating virtual reality into educational settings, ensuring that virtual reality technology is used in a way that aligns with the strengths and needs of autistic learners. Overall, the framework promotes a strengths-based approach in utilizing virtual reality technology for individuals with autism, fostering inclusivity and maximizing the benefits of immersive experiences.
Autism, Ahead of Print.
This study presents a strengths-based framework for designing virtual reality experiences tailored to the needs and abilities of autistic individuals. Recognizing the potential of virtual reality to provide engaging and immersive learning environments, the framework aligns the strengths and preferences of autistic users with the affordances of virtual reality platforms. Drawing on the existing literature and empirical findings, the framework highlights key areas of alignment, including visual perception, anxiety management, attention to differences, concrete thinking, and response to positive feedback. The framework emphasizes the importance of involving autistic individuals in the co-design and co-creation of virtual reality technologies to ensure a more tailored and preferred user experience. By adopting a strengths-based approach and actively involving autistic individuals, the design and implementation of virtual reality interventions can better address their unique needs and foster positive outcomes. The study concludes by advocating for continued research and collaboration to advance the field of virtual reality technology for autistic individuals and to work toward shared goals with the autistic community.Lay abstractVirtual reality has been studied for its potential in supporting individuals with autism, but existing research often focuses on deficits and lacks consideration of individual preferences and strengths. This article introduces a framework that emphasizes the strengths and abilities of autistic individuals when designing virtual reality interventions. It builds upon an existing taxonomy of educational technology affordances and extends it to align with the unique needs of autistic individuals. The framework provides guidance for incorporating virtual reality technology that supports and amplifies autistic strengths, such as visual perception and response to positive feedback. The framework has implications for practice, research, and policy. For practitioners, it offers a tool for designing virtual reality experiences that cater to the strengths of autistic individuals, enhancing engagement and educational outcomes. Researchers can utilize the framework to guide the development of user-centered virtual reality interventions and expand our understanding of the potential benefits of virtual reality for autistic populations. Policymakers and educators can consider this framework when incorporating virtual reality into educational settings, ensuring that virtual reality technology is used in a way that aligns with the strengths and needs of autistic learners. Overall, the framework promotes a strengths-based approach in utilizing virtual reality technology for individuals with autism, fostering inclusivity and maximizing the benefits of immersive experiences.
Bilingual exposure might enhance L1 development in Cantonese–English bilingual autistic children: Evidence from the production of focus
- November 08, 2023
Autism, Ahead of Print.
This study investigated bilingualism effects on the production of focus in 5- to 9-year-old Cantonese–English bilingual autistic children’s L1 Cantonese, compared to their monolingual autistic peers as well as monolingual and bilingual typically developing children matched in nonverbal IQ, working memory, receptive vocabulary and maternal education. The results from an elicitation task showed that monolingual autistic children had significantly lower accuracy than typically developing children in producing focus in subject and object positions. Bilingual autistic children in general performed similarly to monolingual autistic children but outperformed their monolingual autistic peers in the production of object focus with a significantly higher accuracy. The total amount of English exposure did not relate to the accuracy of focus production in autistic and typically developing children. Our results also revealed autistic children’s tendency to make use of less prosodic means to produce focus. The overall findings indicate that bilingual exposure has no detrimental effect on the language skills of autistic children but might enhance the production of focus in bilingual autistic children’s L1 Cantonese.Lay abstractIt is commonly believed among professionals and parents that exposure to two languages imposes an additional burden on children with autism spectrum disorder. However, there is a lack of empirical evidence to support or reject this belief. With the prevalence of autism and an increasing number of children growing up bilingual, it is urgent to understand how bilingual exposure interacts with autism. Bilingual autistic children from Hong Kong, with Cantonese as their first language and English as their second language, took part in the study. We used a production game to test how bilingual autistic children use different levels of linguistic knowledge to produce contrastive information in real conversations, compared to their monolingual autistic peers and typically developing children matched in language abilities, nonverbal IQ, working memory and maternal education. We found that bilingual autistic children performed as good as typically developing children in general, and they even performed better than monolingual autistic children. Our findings suggest a bilingual advantage in autistic children in conveying constative information in sentences. We thus encourage parents to engage their children in rich bilingual environments. Clinicians, educators and other professionals may also consider adding bilingual aspects in training programmes to support families raising bilingual autistic children.
Autism, Ahead of Print.
This study investigated bilingualism effects on the production of focus in 5- to 9-year-old Cantonese–English bilingual autistic children’s L1 Cantonese, compared to their monolingual autistic peers as well as monolingual and bilingual typically developing children matched in nonverbal IQ, working memory, receptive vocabulary and maternal education. The results from an elicitation task showed that monolingual autistic children had significantly lower accuracy than typically developing children in producing focus in subject and object positions. Bilingual autistic children in general performed similarly to monolingual autistic children but outperformed their monolingual autistic peers in the production of object focus with a significantly higher accuracy. The total amount of English exposure did not relate to the accuracy of focus production in autistic and typically developing children. Our results also revealed autistic children’s tendency to make use of less prosodic means to produce focus. The overall findings indicate that bilingual exposure has no detrimental effect on the language skills of autistic children but might enhance the production of focus in bilingual autistic children’s L1 Cantonese.Lay abstractIt is commonly believed among professionals and parents that exposure to two languages imposes an additional burden on children with autism spectrum disorder. However, there is a lack of empirical evidence to support or reject this belief. With the prevalence of autism and an increasing number of children growing up bilingual, it is urgent to understand how bilingual exposure interacts with autism. Bilingual autistic children from Hong Kong, with Cantonese as their first language and English as their second language, took part in the study. We used a production game to test how bilingual autistic children use different levels of linguistic knowledge to produce contrastive information in real conversations, compared to their monolingual autistic peers and typically developing children matched in language abilities, nonverbal IQ, working memory and maternal education. We found that bilingual autistic children performed as good as typically developing children in general, and they even performed better than monolingual autistic children. Our findings suggest a bilingual advantage in autistic children in conveying constative information in sentences. We thus encourage parents to engage their children in rich bilingual environments. Clinicians, educators and other professionals may also consider adding bilingual aspects in training programmes to support families raising bilingual autistic children.
Coming out autistic at work: A review of the literature
- November 08, 2023
Autism, Ahead of Print.
Research consistently documents the negative postsecondary outcomes of autistic individuals. Identifying facilitators and barriers to obtaining and maintaining employment is imperative to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a facilitator or barrier to obtaining and maintaining employment, but little is known about the lived experiences of individuals on the spectrum regarding diagnosis disclosure at work. To ascertain why autistic individuals choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support autistic individuals’ transition to employment.Lay abstractResearch consistently documents the poor postsecondary outcomes of autistic individuals. It is important to identify supports that help autistic individuals get and keep jobs to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a support (e.g., receiving accommodations) or as a barrier (e.g., discrimination) to getting and keeping employment, but little is known about the lived experiences of autistic individuals on diagnosis disclosure at work. To better understand why individuals on the spectrum choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support their transition to employment. Findings from the review indicate that diagnosis disclosure is a highly complex decision. Across reviewed studies, participants chose to pursue disclosure for specific reasons, including access to accommodations or support, increase understanding, and advocate for self or others. Autistic individuals participating across reviewed studies shared they chose not to disclose primarily due to fears of discrimination and experience of stigma. Both the hopes (access to accommodations and supports) and fears (bullying and discrimination) were validated in the experienced consequences of disclosure. More research is needed on the contextual experiences of how individuals on the spectrum disclose their diagnosis at work.
Autism, Ahead of Print.
Research consistently documents the negative postsecondary outcomes of autistic individuals. Identifying facilitators and barriers to obtaining and maintaining employment is imperative to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a facilitator or barrier to obtaining and maintaining employment, but little is known about the lived experiences of individuals on the spectrum regarding diagnosis disclosure at work. To ascertain why autistic individuals choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support autistic individuals’ transition to employment.Lay abstractResearch consistently documents the poor postsecondary outcomes of autistic individuals. It is important to identify supports that help autistic individuals get and keep jobs to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a support (e.g., receiving accommodations) or as a barrier (e.g., discrimination) to getting and keeping employment, but little is known about the lived experiences of autistic individuals on diagnosis disclosure at work. To better understand why individuals on the spectrum choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support their transition to employment. Findings from the review indicate that diagnosis disclosure is a highly complex decision. Across reviewed studies, participants chose to pursue disclosure for specific reasons, including access to accommodations or support, increase understanding, and advocate for self or others. Autistic individuals participating across reviewed studies shared they chose not to disclose primarily due to fears of discrimination and experience of stigma. Both the hopes (access to accommodations and supports) and fears (bullying and discrimination) were validated in the experienced consequences of disclosure. More research is needed on the contextual experiences of how individuals on the spectrum disclose their diagnosis at work.
Diabetes mellitus in privately insured autistic adults in the United States
- October 27, 2023
Autism, Ahead of Print.
Diabetes mellitus is a challenging chronic health condition at the forefront of attention of the healthcare system. Important estimates quantifying how diabetes prevalence varies by age are available for the general population, but these estimates are poorly characterized among autistic adults. Improved diabetes prevalence and likelihood estimates are needed to understand the impact of diabetes on this population. We analyzed IBM MarketScan health claims data from 2019 to 2020 to estimate diabetes prevalence among privately insured autistic (N = 54,500) and non-autistic adults (N = 109,000) and estimate autistic adults’ likelihood of diabetes relative to non-autistic adults at 5-year age intervals (e.g. 18–22 to 23–27) when controlling for demographic factors. Diabetes prevalence was 5.15% for autistic adults and 3.07% for non-autistic adults. Autistic adults had a higher likelihood of diabetes than non-autistic adults at most 5-year age intervals, with the greatest difference at ages 23–37 (odds ratio = 2.67; 95% confidence interval = 2.33–3.06). Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes. Thus, development of diabetes support services and programs that accommodate autistic adults’ individualized needs are important for future study to promote optimal diabetes outcomes for this population.Lay abstractDiabetes is a chronic health condition that is challenging to manage. Estimates of how common diabetes is among non-autistic adults are available, but improved estimates for autistic adults are needed. The purpose of this study was to obtain improved diabetes estimates for autistic adults. We analyzed a large private health insurance claims database to estimate how common diabetes was among autistic adults, and how likely autistic adults were to have diabetes compared to non-autistic adults at 5-year age intervals throughout adulthood (e.g. 18–22, 23–27). We found that diabetes was more common among autistic adults than non-autistic adults and that autistic adults were significantly more likely than non-autistic adults to have diabetes throughout most of adulthood. Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes in adulthood. The development of diabetes support services and programs that accommodate autistic adults’ individual needs are important for future study to promote positive diabetes outcomes for autistic adults.
Autism, Ahead of Print.
Diabetes mellitus is a challenging chronic health condition at the forefront of attention of the healthcare system. Important estimates quantifying how diabetes prevalence varies by age are available for the general population, but these estimates are poorly characterized among autistic adults. Improved diabetes prevalence and likelihood estimates are needed to understand the impact of diabetes on this population. We analyzed IBM MarketScan health claims data from 2019 to 2020 to estimate diabetes prevalence among privately insured autistic (N = 54,500) and non-autistic adults (N = 109,000) and estimate autistic adults’ likelihood of diabetes relative to non-autistic adults at 5-year age intervals (e.g. 18–22 to 23–27) when controlling for demographic factors. Diabetes prevalence was 5.15% for autistic adults and 3.07% for non-autistic adults. Autistic adults had a higher likelihood of diabetes than non-autistic adults at most 5-year age intervals, with the greatest difference at ages 23–37 (odds ratio = 2.67; 95% confidence interval = 2.33–3.06). Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes. Thus, development of diabetes support services and programs that accommodate autistic adults’ individualized needs are important for future study to promote optimal diabetes outcomes for this population.Lay abstractDiabetes is a chronic health condition that is challenging to manage. Estimates of how common diabetes is among non-autistic adults are available, but improved estimates for autistic adults are needed. The purpose of this study was to obtain improved diabetes estimates for autistic adults. We analyzed a large private health insurance claims database to estimate how common diabetes was among autistic adults, and how likely autistic adults were to have diabetes compared to non-autistic adults at 5-year age intervals throughout adulthood (e.g. 18–22, 23–27). We found that diabetes was more common among autistic adults than non-autistic adults and that autistic adults were significantly more likely than non-autistic adults to have diabetes throughout most of adulthood. Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes in adulthood. The development of diabetes support services and programs that accommodate autistic adults’ individual needs are important for future study to promote positive diabetes outcomes for autistic adults.
Cognitive emotion regulation difficulties increase affective reactivity to daily-life stress in autistic adolescents and young adults
- October 26, 2023
Autism, Ahead of Print.
Increased reactivity to daily stressors is associated with mental health difficulties, which are common in autistic individuals. We investigated affective reactivity to daily-life stress, cognitive emotion regulation, and their link with co-occurring mental health symptoms in adolescents and young adults with autism. A 6-day ecological momentary assessment protocol was used to assess perceived daily-life stress (event-related, activity-related, and social stress) as well as negative affects in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) participants. Co-occurring mental health difficulties, social functioning, and cognitive emotion regulation were assessed with questionnaires and clinical evaluations. Youth with autism showed higher levels of perceived stress related to their daily social context and activities, as well as an increased affective reactivity to activity-related stressors compared with non-autistic youth. Moreover, they reported using less adaptive and more non-adaptive emotion regulation, the latter increasing their affective response to daily stressors and possibly contributing to the severity of co-occurring mental health symptoms. Our findings demonstrate high perceived daily-life stress in autistic adolescents and young adults. To minimize the negative effects of stress and the development of mental health symptoms, interventions could focus on effective stress management and strategies that autistic young people use to manage their emotions.Lay abstractPrevious research has shown that autistic individuals report high levels of perceived stress and have an increased likelihood of developing mental health difficulties. Increase in individuals’ negative emotions in relation to perceived stress (i.e. affective reactivity to stress) is a known risk factor for mental health difficulties. In this study, we investigated perceived daily stress and affective reactivity to stress in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) adolescents and young adults. We used the ecological momentary assessment, a technique that allows to assess individuals repeatedly in their daily life using their smartphone. Moreover, participants filled a questionnaire to evaluate the strategies they use to regulate emotions when faced with difficulties. Finally, a clinical interview and a parent-report questionnaire were used to assess mental health symptoms. Autistic youth reported higher levels of perceived daily stress compared with non-autistic peers. Moreover, they showed increased affective reactivity to stress related to their daily activities. Autistic participants reported more emotion regulation difficulties (e.g. more repetitive thinking of difficulties) compared with non-autistic participants. Difficulties in emotion regulation increased negative emotions in relation to stress and might contribute to the severity of mental health symptoms. We conclude that adolescents and young adults with autism report high perceived stress in their daily lives. To minimize the negative impact of stress and the development of mental health symptoms, people supporting autistic young people could focus on stress management skills and the strategies that the youth use to manage emotions.
Autism, Ahead of Print.
Increased reactivity to daily stressors is associated with mental health difficulties, which are common in autistic individuals. We investigated affective reactivity to daily-life stress, cognitive emotion regulation, and their link with co-occurring mental health symptoms in adolescents and young adults with autism. A 6-day ecological momentary assessment protocol was used to assess perceived daily-life stress (event-related, activity-related, and social stress) as well as negative affects in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) participants. Co-occurring mental health difficulties, social functioning, and cognitive emotion regulation were assessed with questionnaires and clinical evaluations. Youth with autism showed higher levels of perceived stress related to their daily social context and activities, as well as an increased affective reactivity to activity-related stressors compared with non-autistic youth. Moreover, they reported using less adaptive and more non-adaptive emotion regulation, the latter increasing their affective response to daily stressors and possibly contributing to the severity of co-occurring mental health symptoms. Our findings demonstrate high perceived daily-life stress in autistic adolescents and young adults. To minimize the negative effects of stress and the development of mental health symptoms, interventions could focus on effective stress management and strategies that autistic young people use to manage their emotions.Lay abstractPrevious research has shown that autistic individuals report high levels of perceived stress and have an increased likelihood of developing mental health difficulties. Increase in individuals’ negative emotions in relation to perceived stress (i.e. affective reactivity to stress) is a known risk factor for mental health difficulties. In this study, we investigated perceived daily stress and affective reactivity to stress in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) adolescents and young adults. We used the ecological momentary assessment, a technique that allows to assess individuals repeatedly in their daily life using their smartphone. Moreover, participants filled a questionnaire to evaluate the strategies they use to regulate emotions when faced with difficulties. Finally, a clinical interview and a parent-report questionnaire were used to assess mental health symptoms. Autistic youth reported higher levels of perceived daily stress compared with non-autistic peers. Moreover, they showed increased affective reactivity to stress related to their daily activities. Autistic participants reported more emotion regulation difficulties (e.g. more repetitive thinking of difficulties) compared with non-autistic participants. Difficulties in emotion regulation increased negative emotions in relation to stress and might contribute to the severity of mental health symptoms. We conclude that adolescents and young adults with autism report high perceived stress in their daily lives. To minimize the negative impact of stress and the development of mental health symptoms, people supporting autistic young people could focus on stress management skills and the strategies that the youth use to manage emotions.
Infant responses to direct gaze and associations to autism: A live eye-tracking study
- October 26, 2023
Autism, Ahead of Print.
Being looked at is an important communicative signal, and attenuated responses to such direct gaze have been suggested as an early sign of autism. Using live eye tracking, we examined whether direct gaze elicits different gaze responses in infants at ages 10, 14 and 18 months with and without later autism in real-life interaction. The sample consisted of 169 infants: 35 with elevated likelihood of autism and subsequent diagnosis, 94 without subsequent diagnosis and 40 with typical likelihood of autism. Infants in all groups tended to look more towards the adult’s face shortly after the direct gaze occurred. Neither how much nor how quickly the infants responded to the direct gaze differentiated the without elevated likelihood of autism and subsequent diagnosis and with elevated likelihood of autism and subsequent diagnosis groups. Infants in the typical likelihood group looked more at the face after the direct-gaze event than infants in the two elevated likelihood groups, but this result is tentative. In an exploratory analysis, infants in the elevated likelihood of autism and subsequent diagnosis group looked away quicker from faces with direct gaze than infants in the typical likelihood group, but this measure did not correlate with dimensional autism or differentiate between the two elevated likelihood groups. The current results suggest that attenuated behavioural responses to direct gaze in infancy are neither strong nor specific early markers of autism.Lay abstractWhen other people look directly towards us, we often respond by looking back at them, and such direct-gaze responses are important for establishing eye contact. Atypical eye contact is common in autism, but how and when this aspect of autism develops is not well understood. Here, we studied whether how much and how quickly infants respond to others’ direct gaze is associated with autism in toddlerhood. We did this by measuring direct-gaze responses in a playful social interaction using live eye tracking. The study included 169 infants, of whom 129 had an elevated likelihood of developing autism due to having a first-degree family member with the condition, and 40 with typical likelihood of autism. In the elevated likelihood group, 35 were diagnosed with autism spectrum disorder at 3 years of age, and 94 were not. The results showed that infants in all three groups tended to increase their looking towards the adult’s face after the adult looked directly at them. However, neither how much nor how quickly the infants responded to direct gaze by looking back at the adult reliably differentiated the infants with or without subsequent autism. While infants in the elevated likelihood of autism and subsequent diagnosis group tended to look away quicker from faces with direct gaze than infants in the typical likelihood group, this measure did not differentiate between the two elevated likelihood groups. We interpret the results as supporting the view that atypical direct-gaze responses are not early markers of autism.
Autism, Ahead of Print.
Being looked at is an important communicative signal, and attenuated responses to such direct gaze have been suggested as an early sign of autism. Using live eye tracking, we examined whether direct gaze elicits different gaze responses in infants at ages 10, 14 and 18 months with and without later autism in real-life interaction. The sample consisted of 169 infants: 35 with elevated likelihood of autism and subsequent diagnosis, 94 without subsequent diagnosis and 40 with typical likelihood of autism. Infants in all groups tended to look more towards the adult’s face shortly after the direct gaze occurred. Neither how much nor how quickly the infants responded to the direct gaze differentiated the without elevated likelihood of autism and subsequent diagnosis and with elevated likelihood of autism and subsequent diagnosis groups. Infants in the typical likelihood group looked more at the face after the direct-gaze event than infants in the two elevated likelihood groups, but this result is tentative. In an exploratory analysis, infants in the elevated likelihood of autism and subsequent diagnosis group looked away quicker from faces with direct gaze than infants in the typical likelihood group, but this measure did not correlate with dimensional autism or differentiate between the two elevated likelihood groups. The current results suggest that attenuated behavioural responses to direct gaze in infancy are neither strong nor specific early markers of autism.Lay abstractWhen other people look directly towards us, we often respond by looking back at them, and such direct-gaze responses are important for establishing eye contact. Atypical eye contact is common in autism, but how and when this aspect of autism develops is not well understood. Here, we studied whether how much and how quickly infants respond to others’ direct gaze is associated with autism in toddlerhood. We did this by measuring direct-gaze responses in a playful social interaction using live eye tracking. The study included 169 infants, of whom 129 had an elevated likelihood of developing autism due to having a first-degree family member with the condition, and 40 with typical likelihood of autism. In the elevated likelihood group, 35 were diagnosed with autism spectrum disorder at 3 years of age, and 94 were not. The results showed that infants in all three groups tended to increase their looking towards the adult’s face after the adult looked directly at them. However, neither how much nor how quickly the infants responded to direct gaze by looking back at the adult reliably differentiated the infants with or without subsequent autism. While infants in the elevated likelihood of autism and subsequent diagnosis group tended to look away quicker from faces with direct gaze than infants in the typical likelihood group, this measure did not differentiate between the two elevated likelihood groups. We interpret the results as supporting the view that atypical direct-gaze responses are not early markers of autism.
Autistic adults’ views on the design and processes within randomised controlled trials: The APRiCoT study
- October 26, 2023
Autism, Ahead of Print.
The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples’ heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community.Lay abstractLarge randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population.
Autism, Ahead of Print.
The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples’ heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community.Lay abstractLarge randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population.
Validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) in primary care clinics in Singapore
- October 26, 2023
Autism, Ahead of Print.
Screening for autism in childhood has been advocated as a part of standard care. Challenges exist with screening implementation and performance of screening tools in clinical practice. This study aimed to examine the validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) for screening of autism in Singapore. Caregivers completed the M-CHAT-R/F as a part of the routine 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by trained nursing staff. Children screened positive and a subset of those screened negative underwent diagnostic assessments for autism, which included an Autism Diagnostic Observation Schedule, Second Edition. Participants were 5336 multiethnic children (mean age 18.6 ± 0.9 months, 51.3% male gender). In total, 113 (2.1%) were screened positive, of which 54 (1.0%) were classified to have autism after their diagnostic assessment. Sensitivity of the M-CHAT-R/F was 88.6%, specificity 71.4%, and positive predictive value 90.7% for an autism diagnosis. The majority of respondents rated the screening process as feasible within the clinic setting. The M-CHAT-R/F had acceptable psychometric properties and high feasibility when used in primary care settings in Singapore. Recommendations for implementation of systematic screening and future research are presented.Lay abstractSystematic screening for autism in early childhood has been suggested to improve eventual outcomes by facilitating earlier diagnosis and access to intervention. However, clinical implementation of screening has to take into account effectiveness and feasibility of use within a healthcare setting for accurate diagnosis of autism. In Singapore, autism screening using a structured screening tool is not currently employed as a part of routine well-child visits for children in primary care clinics. In this study, 5336 children (aged 17–20 months) were screened for autism using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) during their 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by nursing staff at each clinic. Children screened positive and a portion of those screened negative then underwent diagnostic assessments to determine whether they met the diagnostic criteria for autism. In total, 113 (2.1%) were screened positive, of which 54 (1.0%) met the criteria for autism. Children who screened positive and received a diagnosis accessed autism-specific intervention at an average age of 22 months. Nurses and physicians rated the acceptability and practicality of the M-CHAT-R/F highly. Therefore, the M-CHAT-R/F questionnaire was an effective and feasible tool for autism screening among 18-month-old children in this study. Future studies will be designed to determine the optimal age of screening and role of repeated screening in Singapore, as well as to better understand any potential improved outcomes nationwide compared with pre-implementation of autism screening.
Autism, Ahead of Print.
Screening for autism in childhood has been advocated as a part of standard care. Challenges exist with screening implementation and performance of screening tools in clinical practice. This study aimed to examine the validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) for screening of autism in Singapore. Caregivers completed the M-CHAT-R/F as a part of the routine 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by trained nursing staff. Children screened positive and a subset of those screened negative underwent diagnostic assessments for autism, which included an Autism Diagnostic Observation Schedule, Second Edition. Participants were 5336 multiethnic children (mean age 18.6 ± 0.9 months, 51.3% male gender). In total, 113 (2.1%) were screened positive, of which 54 (1.0%) were classified to have autism after their diagnostic assessment. Sensitivity of the M-CHAT-R/F was 88.6%, specificity 71.4%, and positive predictive value 90.7% for an autism diagnosis. The majority of respondents rated the screening process as feasible within the clinic setting. The M-CHAT-R/F had acceptable psychometric properties and high feasibility when used in primary care settings in Singapore. Recommendations for implementation of systematic screening and future research are presented.Lay abstractSystematic screening for autism in early childhood has been suggested to improve eventual outcomes by facilitating earlier diagnosis and access to intervention. However, clinical implementation of screening has to take into account effectiveness and feasibility of use within a healthcare setting for accurate diagnosis of autism. In Singapore, autism screening using a structured screening tool is not currently employed as a part of routine well-child visits for children in primary care clinics. In this study, 5336 children (aged 17–20 months) were screened for autism using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) during their 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by nursing staff at each clinic. Children screened positive and a portion of those screened negative then underwent diagnostic assessments to determine whether they met the diagnostic criteria for autism. In total, 113 (2.1%) were screened positive, of which 54 (1.0%) met the criteria for autism. Children who screened positive and received a diagnosis accessed autism-specific intervention at an average age of 22 months. Nurses and physicians rated the acceptability and practicality of the M-CHAT-R/F highly. Therefore, the M-CHAT-R/F questionnaire was an effective and feasible tool for autism screening among 18-month-old children in this study. Future studies will be designed to determine the optimal age of screening and role of repeated screening in Singapore, as well as to better understand any potential improved outcomes nationwide compared with pre-implementation of autism screening.
Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers
- October 26, 2023
Autism, Ahead of Print.
There has been intense debate within the autistic and autism communities about the use of autism biobanks – repositories containing biological and phenotypic materials – and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource.Lay abstractA lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created ‘biobanks’ – collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work.
Autism, Ahead of Print.
There has been intense debate within the autistic and autism communities about the use of autism biobanks – repositories containing biological and phenotypic materials – and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource.Lay abstractA lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created ‘biobanks’ – collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work.
Emotion recognition in autism spectrum condition during the COVID-19 pandemic
- October 26, 2023
Autism, Ahead of Print.
With the widespread use of masks in the COVID-19 pandemic, it is crucial to understand how emotion recognition is affected by partial face covering. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they are likely to be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. This study compared the recognition of basic and complex emotions in individuals with and without autism spectrum condition, when faces were presented uncovered, with face masks, or with sunglasses. We also used eye tracking to examine group differences in gaze patterns during emotion recognition. Individuals with autism spectrum condition were less accurate at recognizing emotions in all three conditions. Averaged across the three stimulus types, individuals with autism spectrum condition had greater difficulty recognizing anger, fear, pride, and embarrassment than control group. There was no group difference in emotion recognition between the three conditions. However, compared to individuals without autism spectrum condition, there was no evidence of either gaze avoidance or preference for the mouth region. Our results suggest that emotion recognition is reduced in individuals with autism spectrum condition, but this is not due to differences in gaze patterns.Lay AbstractIn the COVID-19 pandemic, wearing face masks became mandatory to prevent the spread of the virus. However, they restrict the ability to recognize emotions to the upper part of the face. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they may be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. The current study compared the recognition of facially expressed emotions between individuals with and without autism spectrum condition. Each photo was shown in three types, once uncovered, once with face mask, and once with sunglasses. Our results revealed a reduction in accuracy of individuals with autism spectrum condition at recognizing emotions in all three stimulus types and exhibited more difficulties distinguishing anger, fear, pride, and embarrassment. During the emotion recognition task, there was no difference in which facial areas the groups looked at. We did not find evidence that the disadvantages of individuals with autism spectrum condition in emotion recognition were due to looking at different areas of the face.
Autism, Ahead of Print.
With the widespread use of masks in the COVID-19 pandemic, it is crucial to understand how emotion recognition is affected by partial face covering. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they are likely to be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. This study compared the recognition of basic and complex emotions in individuals with and without autism spectrum condition, when faces were presented uncovered, with face masks, or with sunglasses. We also used eye tracking to examine group differences in gaze patterns during emotion recognition. Individuals with autism spectrum condition were less accurate at recognizing emotions in all three conditions. Averaged across the three stimulus types, individuals with autism spectrum condition had greater difficulty recognizing anger, fear, pride, and embarrassment than control group. There was no group difference in emotion recognition between the three conditions. However, compared to individuals without autism spectrum condition, there was no evidence of either gaze avoidance or preference for the mouth region. Our results suggest that emotion recognition is reduced in individuals with autism spectrum condition, but this is not due to differences in gaze patterns.Lay AbstractIn the COVID-19 pandemic, wearing face masks became mandatory to prevent the spread of the virus. However, they restrict the ability to recognize emotions to the upper part of the face. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they may be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. The current study compared the recognition of facially expressed emotions between individuals with and without autism spectrum condition. Each photo was shown in three types, once uncovered, once with face mask, and once with sunglasses. Our results revealed a reduction in accuracy of individuals with autism spectrum condition at recognizing emotions in all three stimulus types and exhibited more difficulties distinguishing anger, fear, pride, and embarrassment. During the emotion recognition task, there was no difference in which facial areas the groups looked at. We did not find evidence that the disadvantages of individuals with autism spectrum condition in emotion recognition were due to looking at different areas of the face.
Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study
- October 17, 2023
Autism, Ahead of Print.
Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem.Lay abstractAutistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people – all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth.
Autism, Ahead of Print.
Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem.Lay abstractAutistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people – all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth.
Experiences of interpersonal victimization and abuse among autistic people
- October 16, 2023
Autism, Ahead of Print.
Intimate partner violence and sexual assault are under-researched experiences in autistic people’s lives. Recent research, however, has shown that autistic people are more likely to have been victimized than non-autistic people. This research, therefore, sought to explore the firsthand accounts of a range of autistic people about intimate partner violence and sexual assault. Twenty-four autistic adults with lived experience (6 male, 15 female, 3 non-binary) aged 25–61 years took part in semi-structured interviews online. They were asked about their experiences of intimate partner violence and sexual assault, whether and how they felt being autistic interacted with those experiences, and what recommendations they would have for improving education in the future. Almost all participants had repeated experiences of intimate partner violence and sexual assault, regardless of gender, and there were clear similarities in their stories. Six themes with subthemes were identified. These were ‘experiences of abuse’, ‘autism used against you’, ‘poor family models’, ‘impact of/on friendships’, ‘handling trauma’, and ‘recommendations for future practice’. Autistic people experience many of the same patterns of abuse as non-autistic people do, but there are unique autism-related vulnerabilities and outcomes. We found that there were a variety of responses to these experiences, and call for greater understanding so that autistic victims can be better supported.Lay abstractWhat do we already know?Autistic people are more likely to have negative life experiences than non-autistic people, from bullying and ostracization, to being victims of crime, to unemployment and homelessness. This includes being victims of intimate partner violence, sexual assault and domestic abuse. Quantitative work has suggested that as many as 90% of autistic people experience these forms of abuse in some form during their lives, but there is little work asking them to talk about harmful relationships in their own words.What does this article add?This article reports on interviews with 24 autistic adults about their experiences of being victims of intimate partner violence, sexual assault and/or domestic abuse. Some of the themes which came from these interviews are shared with non-autistic victims, but others appeared unique to autistic people. One of these was evidence for unique autism-related vulnerabilities, as well as the impact the abuse had on their relationships long term. Participants also talked about how the sex and relationship education they had received had inadequately prepared them for adult relationships, and how this had contributed to their struggle to recognize and react to abusive behaviour.Implications for practice, research and policyPolicies around intimate partner violence and sexual assault need to be updated to account for the different ways in which neurodivergent people (people whose brains process information differently from the majority) may discuss their experiences, rather than looking for ‘standard narratives’ as an indicator of a need for support. Relationship and sex education should be tailored for autistic young people to help them recognize abusive behaviours, and include how to respond to these safely. We recommend that future research tries to focus specifically on the abuse experiences of autistic men, non-binary and trans people, who have been under-represented in studies to date. In addition, much less is known about the abuse experiences of autistic people of colour or autistic people with intellectual disabilities, who also need to be actively included in these discussions.
Autism, Ahead of Print.
Intimate partner violence and sexual assault are under-researched experiences in autistic people’s lives. Recent research, however, has shown that autistic people are more likely to have been victimized than non-autistic people. This research, therefore, sought to explore the firsthand accounts of a range of autistic people about intimate partner violence and sexual assault. Twenty-four autistic adults with lived experience (6 male, 15 female, 3 non-binary) aged 25–61 years took part in semi-structured interviews online. They were asked about their experiences of intimate partner violence and sexual assault, whether and how they felt being autistic interacted with those experiences, and what recommendations they would have for improving education in the future. Almost all participants had repeated experiences of intimate partner violence and sexual assault, regardless of gender, and there were clear similarities in their stories. Six themes with subthemes were identified. These were ‘experiences of abuse’, ‘autism used against you’, ‘poor family models’, ‘impact of/on friendships’, ‘handling trauma’, and ‘recommendations for future practice’. Autistic people experience many of the same patterns of abuse as non-autistic people do, but there are unique autism-related vulnerabilities and outcomes. We found that there were a variety of responses to these experiences, and call for greater understanding so that autistic victims can be better supported.Lay abstractWhat do we already know?Autistic people are more likely to have negative life experiences than non-autistic people, from bullying and ostracization, to being victims of crime, to unemployment and homelessness. This includes being victims of intimate partner violence, sexual assault and domestic abuse. Quantitative work has suggested that as many as 90% of autistic people experience these forms of abuse in some form during their lives, but there is little work asking them to talk about harmful relationships in their own words.What does this article add?This article reports on interviews with 24 autistic adults about their experiences of being victims of intimate partner violence, sexual assault and/or domestic abuse. Some of the themes which came from these interviews are shared with non-autistic victims, but others appeared unique to autistic people. One of these was evidence for unique autism-related vulnerabilities, as well as the impact the abuse had on their relationships long term. Participants also talked about how the sex and relationship education they had received had inadequately prepared them for adult relationships, and how this had contributed to their struggle to recognize and react to abusive behaviour.Implications for practice, research and policyPolicies around intimate partner violence and sexual assault need to be updated to account for the different ways in which neurodivergent people (people whose brains process information differently from the majority) may discuss their experiences, rather than looking for ‘standard narratives’ as an indicator of a need for support. Relationship and sex education should be tailored for autistic young people to help them recognize abusive behaviours, and include how to respond to these safely. We recommend that future research tries to focus specifically on the abuse experiences of autistic men, non-binary and trans people, who have been under-represented in studies to date. In addition, much less is known about the abuse experiences of autistic people of colour or autistic people with intellectual disabilities, who also need to be actively included in these discussions.
Addressing disruptive behaviors within naturalistic developmental behavioral interventions: Clinical decision-making, intervention outcomes, and implications for practice
- October 16, 2023
Autism, Ahead of Print.
Naturalistic developmental behavioral interventions are an empirically supported intervention approach for young autistic children. Despite the prevalence of disruptive behaviors among autistic children, most manualized caregiver-mediated naturalistic developmental behavioral interventions include limited formal guidance on when and how to manage disruptive behavior. The present study sought to characterize how clinicians address disruptive behaviors within the caregiver-mediated naturalistic developmental behavioral intervention, Project ImPACT, the effect of disruptive behavior on Project ImPACT delivery, and the extent to which disruptive behavior impacts social communication outcomes. Data collection was embedded within outpatient early intervention services and included clinicians’ report of adaptations to address behavior within the electronic medical record, child social communication outcomes from 124 children and their caregivers, and interviews with certified Project ImPACT coaches and trainers. Results indicate that close to one-third of Project ImPACT sessions included adaptations made to address behavior and regulation. Furthermore, adaptations made to address disruptive behavior were associated with more adaptations to Project ImPACT overall, although behavior adaptations were not associated with child social communication outcomes. Qualitatively, clinicians described using a flexible approach to integrate content and coaching related to behavior and regulation. The present study indicates several future directions for supporting clinicians in addressing behavior and regulation within the naturalistic developmental behavioral intervention framework.Lay AbstractNaturalistic developmental behavioral interventions are a common and well-researched type of intervention for young autistic children that focus on supporting social communication. These interventions often do not include formal guidelines on how to address disruptive behaviors, even though they are common among autistic children. This study measured how often clinicians delivering a specific naturalistic developmental behavioral intervention, Project ImPACT, adapted how they delivered the program to address disruptive behavior, and how these adaptations related to children’s social communication outcomes at the end of their participation in the intervention. We also spoke with clinicians about how they address disruptive behavior and emotion regulation during their sessions. In this study, clinicians adapted Project ImPACT to address disruptive behaviors in about one-third of all sessions. These adaptations did not affect children’s social communication outcomes. Clinicians discussed how they felt social communication, disruptive behavior, and emotion regulation are linked to one another and that they often try to integrate intervention strategies to address each of these areas. However, they note that a clinicians’ approach to addressing disruptive behavior might vary depending on their level of training and experience. These results indicate several future directions for supporting clinicians in addressing behavior and regulation effectively within these types of interventions.
Autism, Ahead of Print.
Naturalistic developmental behavioral interventions are an empirically supported intervention approach for young autistic children. Despite the prevalence of disruptive behaviors among autistic children, most manualized caregiver-mediated naturalistic developmental behavioral interventions include limited formal guidance on when and how to manage disruptive behavior. The present study sought to characterize how clinicians address disruptive behaviors within the caregiver-mediated naturalistic developmental behavioral intervention, Project ImPACT, the effect of disruptive behavior on Project ImPACT delivery, and the extent to which disruptive behavior impacts social communication outcomes. Data collection was embedded within outpatient early intervention services and included clinicians’ report of adaptations to address behavior within the electronic medical record, child social communication outcomes from 124 children and their caregivers, and interviews with certified Project ImPACT coaches and trainers. Results indicate that close to one-third of Project ImPACT sessions included adaptations made to address behavior and regulation. Furthermore, adaptations made to address disruptive behavior were associated with more adaptations to Project ImPACT overall, although behavior adaptations were not associated with child social communication outcomes. Qualitatively, clinicians described using a flexible approach to integrate content and coaching related to behavior and regulation. The present study indicates several future directions for supporting clinicians in addressing behavior and regulation within the naturalistic developmental behavioral intervention framework.Lay AbstractNaturalistic developmental behavioral interventions are a common and well-researched type of intervention for young autistic children that focus on supporting social communication. These interventions often do not include formal guidelines on how to address disruptive behaviors, even though they are common among autistic children. This study measured how often clinicians delivering a specific naturalistic developmental behavioral intervention, Project ImPACT, adapted how they delivered the program to address disruptive behavior, and how these adaptations related to children’s social communication outcomes at the end of their participation in the intervention. We also spoke with clinicians about how they address disruptive behavior and emotion regulation during their sessions. In this study, clinicians adapted Project ImPACT to address disruptive behaviors in about one-third of all sessions. These adaptations did not affect children’s social communication outcomes. Clinicians discussed how they felt social communication, disruptive behavior, and emotion regulation are linked to one another and that they often try to integrate intervention strategies to address each of these areas. However, they note that a clinicians’ approach to addressing disruptive behavior might vary depending on their level of training and experience. These results indicate several future directions for supporting clinicians in addressing behavior and regulation effectively within these types of interventions.
App-based meditation habits maintain reductions in depression symptoms among autistic adults
- October 14, 2023
Autism, Ahead of Print.
Mobile app-based meditation is an effective self-care solution for depression, but limited evidence exists for the long-term benefits among autistic adults, who are at increased risk of experiencing depression. The primary goal of this study was to examine the feasibility and effectiveness of incorporating habit training into an app-based meditation intervention to maintain reductions in depressive symptoms among autistic adults. Participants were randomized to an App Only (who only received access to the meditation app), App + Habit Training (who received the meditation app and instructions for anchoring their app-based meditation to an existing routine), or a waitlist control group. All participants completed questionnaires at baseline, post-intervention, and 6 months post-intervention, and responded to SMS ecological momentary assessments regarding their meditation practice during the 8-week intervention and an 8-week follow-up period. The results show that the App + Habit Training group reported significantly more days with meditation per week during and after the intervention (p < 0.05) and also experienced a larger decrease in depression symptoms post-intervention and 6 months later (p < 0.05) relative to the control group. These findings demonstrate that app-based meditation habits are an effective self-care solution for autistic adults with depression, and anchoring is a promising strategy for establishing other healthy habits among autistic adults.Lay AbstractExisting research has identified an increased risk of depression among autistic adults, which can negatively impact their adaptive functioning abilities and socioeconomic outcomes. Mobile app-based meditation is a feasible, accessible, and effective self-care solution for depression among neurotypical adults, but there is limited evidence for the long-term benefits of app-based meditation among autistic adults. Habits are a key behavioral strategy for maintaining behavior change, and anchoring is one effective habit formation intervention that has yet to be tested among autistic adults. This study demonstrates that it is both feasible and effective to integrate the anchoring habit formation strategy into an app-based meditation intervention for establishing meditation habits among autistic adults. In addition, the study shows that app-based meditation habits were successful at maintaining reductions in depressive symptoms over 6 months. These results demonstrate the power of anchoring-based habit formation interventions for establishing healthy habits among autistic adults, which offers a promising behavioral intervention technique for establishing other healthy habits among autistic adults. The study also shows that app-based meditation habits are an effective long-term self-care solution for managing depressive symptoms among autistic adults that should be used by mental health providers and policymakers. Future research should test this combined anchoring and app-based meditation intervention technique among larger samples of autistic adults and over longer durations to better understand the mechanisms underlying the success of this intervention.
Autism, Ahead of Print.
Mobile app-based meditation is an effective self-care solution for depression, but limited evidence exists for the long-term benefits among autistic adults, who are at increased risk of experiencing depression. The primary goal of this study was to examine the feasibility and effectiveness of incorporating habit training into an app-based meditation intervention to maintain reductions in depressive symptoms among autistic adults. Participants were randomized to an App Only (who only received access to the meditation app), App + Habit Training (who received the meditation app and instructions for anchoring their app-based meditation to an existing routine), or a waitlist control group. All participants completed questionnaires at baseline, post-intervention, and 6 months post-intervention, and responded to SMS ecological momentary assessments regarding their meditation practice during the 8-week intervention and an 8-week follow-up period. The results show that the App + Habit Training group reported significantly more days with meditation per week during and after the intervention (p < 0.05) and also experienced a larger decrease in depression symptoms post-intervention and 6 months later (p < 0.05) relative to the control group. These findings demonstrate that app-based meditation habits are an effective self-care solution for autistic adults with depression, and anchoring is a promising strategy for establishing other healthy habits among autistic adults.Lay AbstractExisting research has identified an increased risk of depression among autistic adults, which can negatively impact their adaptive functioning abilities and socioeconomic outcomes. Mobile app-based meditation is a feasible, accessible, and effective self-care solution for depression among neurotypical adults, but there is limited evidence for the long-term benefits of app-based meditation among autistic adults. Habits are a key behavioral strategy for maintaining behavior change, and anchoring is one effective habit formation intervention that has yet to be tested among autistic adults. This study demonstrates that it is both feasible and effective to integrate the anchoring habit formation strategy into an app-based meditation intervention for establishing meditation habits among autistic adults. In addition, the study shows that app-based meditation habits were successful at maintaining reductions in depressive symptoms over 6 months. These results demonstrate the power of anchoring-based habit formation interventions for establishing healthy habits among autistic adults, which offers a promising behavioral intervention technique for establishing other healthy habits among autistic adults. The study also shows that app-based meditation habits are an effective long-term self-care solution for managing depressive symptoms among autistic adults that should be used by mental health providers and policymakers. Future research should test this combined anchoring and app-based meditation intervention technique among larger samples of autistic adults and over longer durations to better understand the mechanisms underlying the success of this intervention.
Mapping the link between socio-economic factors, autistic traits and mental health across different settings
- October 12, 2023
Autism, Ahead of Print.
Autistic individuals experience higher rates of externalising and internalising symptoms that may vary with environmental factors. However, there is limited research on variation across settings that may highlight common factors with globally generalisable effects. Data were taken from two cohorts: a multinational European sample (n = 764; 453 autistic; 311 non-autistic; 6–30 years), and a South African sample (n = 100 non-autistic; 3–11 years). An exploratory factor analysis aggregated clinical (Verbal Comprehension and Perceptual Index), adaptive traits (Vineland Adaptive Behaviour Scale) and socio-economic variables (parental employment and education, home and family characteristics) in each cohort separately. With regression, we investigated the effect of these factors and autistic traits on internalising and externalising scores (measured with the Strengths and Difficulties Questionnaire). Cohorts showed similar four-factor structures (Person Characteristics, Family System, Parental and Material Resources). The ‘Family System’ factor captured family size and maternal factors and was associated with lower internalising and externalising symptoms in both cohorts. In the European cohort, high autistic traits reduced this effect; the opposite was found in the South Africa cohort. Our exploratory findings from two separate analyses represent consistent evidence that Family System is associated with internalising and externalising symptoms, with a context-specific impact in persons with high autism traits.Lay AbstractAutistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings – in Europe and South Africa – to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific ‘factors’. We found that four similar ‘factors’ could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just ‘Family System’ was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people.
Autism, Ahead of Print.
Autistic individuals experience higher rates of externalising and internalising symptoms that may vary with environmental factors. However, there is limited research on variation across settings that may highlight common factors with globally generalisable effects. Data were taken from two cohorts: a multinational European sample (n = 764; 453 autistic; 311 non-autistic; 6–30 years), and a South African sample (n = 100 non-autistic; 3–11 years). An exploratory factor analysis aggregated clinical (Verbal Comprehension and Perceptual Index), adaptive traits (Vineland Adaptive Behaviour Scale) and socio-economic variables (parental employment and education, home and family characteristics) in each cohort separately. With regression, we investigated the effect of these factors and autistic traits on internalising and externalising scores (measured with the Strengths and Difficulties Questionnaire). Cohorts showed similar four-factor structures (Person Characteristics, Family System, Parental and Material Resources). The ‘Family System’ factor captured family size and maternal factors and was associated with lower internalising and externalising symptoms in both cohorts. In the European cohort, high autistic traits reduced this effect; the opposite was found in the South Africa cohort. Our exploratory findings from two separate analyses represent consistent evidence that Family System is associated with internalising and externalising symptoms, with a context-specific impact in persons with high autism traits.Lay AbstractAutistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings – in Europe and South Africa – to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific ‘factors’. We found that four similar ‘factors’ could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just ‘Family System’ was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people.
Differentiating early sensory profiles in toddlers at elevated likelihood of autism and association with later clinical outcome and diagnosis
- October 05, 2023
Autism, Ahead of Print.
Sensory features are included in the diagnostic criteria of autism spectrum disorder, and sensory responsiveness may produce “cascading effects” on later development. However, the relation between early sensory profiles and later skills has yet to be defined. This study aims to characterize sensory subgroups in 116 toddlers at elevated likelihood for autism spectrum disorder and test their association with later autistic traits and diagnosis. We used latent class analyses to assess individual differences across sensory patterns, grouping individuals with similar sensory profiles together. The final model was chosen based on a stepwise procedure, starting with a one-class solution, and then adds one class at a time. The Sensory Profile-2 Questionnaire measured clinical sensory features, and four sensory patterns were evaluated (seeking, avoiding, sensitivity, and registration). We investigated sensory subgroups concerning socio-communication skills and restricted/repetitive behaviors at 24 months and the clinical best-estimate diagnosis at 3 years. A three-class solution was favored, and toddlers can be characterized into three homogeneous sensory groups: low seeking, sensory balanced, and high sensitivity. The results showed that the high sensitivity group showed later socio-communicative difficulties and restricted/repetitive behaviors. Children in this class were those with the highest percentage of diagnosis at 3 years (57.9%). These findings provide new insights into the nature of sensory processing and may have implications for personalized support needs.Lay abstractEarly sensory responsiveness may produce cascading effects on later development, but the relation between sensory profiles and autistic diagnosis remains unclear. In a longitudinal sample of toddlers at elevated likelihood for autism, we aimed to characterize sensory subgroups and their association with clinical outcomes later on. Three sensory subgroups were described and early sensory sensitivity plays a significant role in later development and diagnosis. This study supported the importance of examining different levels of sensory patterns to dissect the phenotypic heterogeneity in sensory processing. As sensory differences are associated with later developmental outcomes, these results may be critical when designing intervention needs and support for children at increased likelihood for neurodevelopmental disorders.
Autism, Ahead of Print.
Sensory features are included in the diagnostic criteria of autism spectrum disorder, and sensory responsiveness may produce “cascading effects” on later development. However, the relation between early sensory profiles and later skills has yet to be defined. This study aims to characterize sensory subgroups in 116 toddlers at elevated likelihood for autism spectrum disorder and test their association with later autistic traits and diagnosis. We used latent class analyses to assess individual differences across sensory patterns, grouping individuals with similar sensory profiles together. The final model was chosen based on a stepwise procedure, starting with a one-class solution, and then adds one class at a time. The Sensory Profile-2 Questionnaire measured clinical sensory features, and four sensory patterns were evaluated (seeking, avoiding, sensitivity, and registration). We investigated sensory subgroups concerning socio-communication skills and restricted/repetitive behaviors at 24 months and the clinical best-estimate diagnosis at 3 years. A three-class solution was favored, and toddlers can be characterized into three homogeneous sensory groups: low seeking, sensory balanced, and high sensitivity. The results showed that the high sensitivity group showed later socio-communicative difficulties and restricted/repetitive behaviors. Children in this class were those with the highest percentage of diagnosis at 3 years (57.9%). These findings provide new insights into the nature of sensory processing and may have implications for personalized support needs.Lay abstractEarly sensory responsiveness may produce cascading effects on later development, but the relation between sensory profiles and autistic diagnosis remains unclear. In a longitudinal sample of toddlers at elevated likelihood for autism, we aimed to characterize sensory subgroups and their association with clinical outcomes later on. Three sensory subgroups were described and early sensory sensitivity plays a significant role in later development and diagnosis. This study supported the importance of examining different levels of sensory patterns to dissect the phenotypic heterogeneity in sensory processing. As sensory differences are associated with later developmental outcomes, these results may be critical when designing intervention needs and support for children at increased likelihood for neurodevelopmental disorders.
Autistic adults’ experiences of financial wellbeing: Part II
- October 05, 2023
Autism, Ahead of Print.
Financial wellbeing is an important component of people’s overall wellbeing, reflecting the capacity to live a comfortable and fulfilling life. Yet virtually nothing is known about this topic for autistic people. This study addressed this gap using a two-phase sequential mixed-methods design. Here, we report on findings from the Phase 2 qualitative study. In this study, 21 autistic participants were purposively selected based on the status of their financial wellbeing, including 12 people with high, and 9 with low, financial wellbeing, and interviewed by an autistic researcher. We identified four themes through reflective thematic analysis. Having access to a stable income made an enormous difference to people’s financial wellbeing. Participants emphasised how their broader social supports, especially family support, shaped their financial wellbeing. Yet, planning financially was often challenging, especially for people who had insufficient money to meet their basic needs. Nevertheless, our participants reported a strong drive to stay in control and avoid unnecessary risk. Our findings revealed how much money matters in autistic people’s lives. Future research should investigate the ways in which autistic people could secure more reliable incomes and identify the most effective ways to support them to achieve financial resilience.Lay abstractMoney matters in people’s lives. It helps to meet people’s basic needs (food, clothes, shelter) and live the lives they want to. When people talk about ‘financial wellbeing’, they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don’t know what autistic people think about these things. That’s why we did our study. We spoke to 21 autistic adults (24–69 years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt ‘financially well’ or ‘financially unwell’ so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could – because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people’s financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security.
Autism, Ahead of Print.
Financial wellbeing is an important component of people’s overall wellbeing, reflecting the capacity to live a comfortable and fulfilling life. Yet virtually nothing is known about this topic for autistic people. This study addressed this gap using a two-phase sequential mixed-methods design. Here, we report on findings from the Phase 2 qualitative study. In this study, 21 autistic participants were purposively selected based on the status of their financial wellbeing, including 12 people with high, and 9 with low, financial wellbeing, and interviewed by an autistic researcher. We identified four themes through reflective thematic analysis. Having access to a stable income made an enormous difference to people’s financial wellbeing. Participants emphasised how their broader social supports, especially family support, shaped their financial wellbeing. Yet, planning financially was often challenging, especially for people who had insufficient money to meet their basic needs. Nevertheless, our participants reported a strong drive to stay in control and avoid unnecessary risk. Our findings revealed how much money matters in autistic people’s lives. Future research should investigate the ways in which autistic people could secure more reliable incomes and identify the most effective ways to support them to achieve financial resilience.Lay abstractMoney matters in people’s lives. It helps to meet people’s basic needs (food, clothes, shelter) and live the lives they want to. When people talk about ‘financial wellbeing’, they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don’t know what autistic people think about these things. That’s why we did our study. We spoke to 21 autistic adults (24–69 years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt ‘financially well’ or ‘financially unwell’ so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could – because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people’s financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security.
‘I live in extremes’: A qualitative investigation of Autistic adults’ experiences of inertial rest and motion
- September 30, 2023
Autism, Ahead of Print.
‘Autistic inertia’ is part of the Autistic community’s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of ‘inertial rest’ (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people’s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial ‘difficulties moving from one state to another’ and described how these challenges pervade ‘every single day’. While inertia was described as ‘the single most disabling part of being Autistic’, interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition.Lay Abstract‘Autistic inertia’ is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people’s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people’s responses. Autistic people spoke about their inertial ‘difficulties moving from one state to another’ and described how these challenges affected them ‘every single day’. While they experienced inertia as ‘the single most disabling part of being Autistic’, people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition.
Autism, Ahead of Print.
‘Autistic inertia’ is part of the Autistic community’s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of ‘inertial rest’ (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people’s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial ‘difficulties moving from one state to another’ and described how these challenges pervade ‘every single day’. While inertia was described as ‘the single most disabling part of being Autistic’, interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition.Lay Abstract‘Autistic inertia’ is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people’s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people’s responses. Autistic people spoke about their inertial ‘difficulties moving from one state to another’ and described how these challenges affected them ‘every single day’. While they experienced inertia as ‘the single most disabling part of being Autistic’, people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition.
Comparison of network structures between autistic and non-autistic adults, and autism subgroups: A focus on demographic, psychological, and lifestyle factors
- September 30, 2023
Autism, Ahead of Print.
Differences in (autism) characteristics are often reported between autistic and non-autistic adults but also between autistic adults. We aimed to determine whether mean differences correspond to differences in network structure of these characteristics in (1) autistic and non-autistic adults and (2) two previously identified autism subgroups. A total of 16 network variables related to demographic and psychological characteristics were included. First, Gaussian Graphical Models (GGMs) were used for network estimation in 261 autistic adults and 384 non-autistic comparisons aged 30–85 years. Second, we repeated this step within two previously identified autism subgroups (N1 = 124, N2 = 130). Third, sex differences were explored in the networks of the autism subgroups. The networks of the autism and comparison groups differed on individual edges and visual inspection, although the Network Comparison Test (NCT) showed no overall differences. The networks of autism subgroups were similar based on visual inspection and statistical comparisons. Sex did not impact the subgroup networks differently. Networks were more similar than different, but observed edge differences could be informative for targeted support. Focusing on mean differences is not sufficient to determine which factors (and associations) are important for autistic people. Thus, network analysis provides a valuable tool beyond assessing mean differences for autistic adults.Lay AbstractThere are large differences in the level of demographic, psychological, and lifestyle characteristics between autistic and non-autistic adults but also among autistic people. Our goal was to test whether these differences correspond to differences in underlying relationships between these characteristics—also referred to as network structure—to determine which characteristics (and relationships between them) are important. We tested differences in network structure in (1) autistic and non-autistic adults and (2) two previously identified subgroups of autistic adults. We showed that comparing networks of autistic and non-autistic adults provides subtle differences, whereas networks of the autism subgroups were similar. There were also no sex differences in the networks of the autism subgroups. Thus, the previously observed differences in the level of characteristics did not correspond to differences across subgroups in how these characteristics relate to one another (i.e. network structure). Consequently, a focus on differences in characteristics is not sufficient to determine which characteristics (and relationships between them) are of importance. Hence, network analysis provides a valuable tool beyond looking at (sub)group level differences. These results could provide hints for clinical practice, to eventually determine whether psychological distress, cognitive failures, and reduced quality of life in autistic adults can be addressed by tailored support. However, it is important that these results are first replicated before we move toward intervention or support.
Autism, Ahead of Print.
Differences in (autism) characteristics are often reported between autistic and non-autistic adults but also between autistic adults. We aimed to determine whether mean differences correspond to differences in network structure of these characteristics in (1) autistic and non-autistic adults and (2) two previously identified autism subgroups. A total of 16 network variables related to demographic and psychological characteristics were included. First, Gaussian Graphical Models (GGMs) were used for network estimation in 261 autistic adults and 384 non-autistic comparisons aged 30–85 years. Second, we repeated this step within two previously identified autism subgroups (N1 = 124, N2 = 130). Third, sex differences were explored in the networks of the autism subgroups. The networks of the autism and comparison groups differed on individual edges and visual inspection, although the Network Comparison Test (NCT) showed no overall differences. The networks of autism subgroups were similar based on visual inspection and statistical comparisons. Sex did not impact the subgroup networks differently. Networks were more similar than different, but observed edge differences could be informative for targeted support. Focusing on mean differences is not sufficient to determine which factors (and associations) are important for autistic people. Thus, network analysis provides a valuable tool beyond assessing mean differences for autistic adults.Lay AbstractThere are large differences in the level of demographic, psychological, and lifestyle characteristics between autistic and non-autistic adults but also among autistic people. Our goal was to test whether these differences correspond to differences in underlying relationships between these characteristics—also referred to as network structure—to determine which characteristics (and relationships between them) are important. We tested differences in network structure in (1) autistic and non-autistic adults and (2) two previously identified subgroups of autistic adults. We showed that comparing networks of autistic and non-autistic adults provides subtle differences, whereas networks of the autism subgroups were similar. There were also no sex differences in the networks of the autism subgroups. Thus, the previously observed differences in the level of characteristics did not correspond to differences across subgroups in how these characteristics relate to one another (i.e. network structure). Consequently, a focus on differences in characteristics is not sufficient to determine which characteristics (and relationships between them) are of importance. Hence, network analysis provides a valuable tool beyond looking at (sub)group level differences. These results could provide hints for clinical practice, to eventually determine whether psychological distress, cognitive failures, and reduced quality of life in autistic adults can be addressed by tailored support. However, it is important that these results are first replicated before we move toward intervention or support.
The impact of coping behaviors on perceived competence and social anxiety in the everyday social engagement of autistic adolescents
- September 30, 2023
Autism, Ahead of Print.
Individuals who cope well with challenges may engage in social situations more successfully. We examined the association between coping behaviors, self-perceived competence, and social anxiety in everyday social situations. A total of 133 participants between the ages of 10 and 16 years (82 autistic, 51 neurotypical) carried a mobile device that prompted them seven times each day for 7 days to record what they were doing and their perceived competence and social anxiety in that situation. We used the Coping Inventory to measure overall coping abilities (i.e. coping with the self and the environment). Multilevel analyses found that autistic adolescents were more likely than neurotypical peers to experience social anxiety while engaged in maintenance or productive activities with adults. While their ability to cope with the self was positively associated with perceived social competence, it was negatively associated with the ability to cope with environmental challenges. Furthermore, autistic adolescents with poor ability to cope with environmental challenges were more likely than those who coped well to be socially anxious when engaged in leisure activities with peers. Findings from this study can guide evaluation and intervention to improve the social experiences of autistic adolescents by helping them increase coping skills.Lay abstractIndividuals who cope well with challenges may engage in social situations more successfully. We examined how well autistic adolescents coped, depending on how competent they felt and how much anxiety they experienced during social activities. We included 133 individuals (82 autistic, 51 neurotypical) between the ages of 10 and 16 years. Participants carried a mobile device that prompted them seven times a day for 7 days to record what they were doing, how competent they felt and how much anxiety they experienced. We used the Coping Inventory to understand how well participants coped with environmental challenges and met their needs for growth. Autistic adolescents were more likely than neurotypical peers to feel anxious while doing activities with adults. Autistic adolescents who had more difficulty coping with challenges were more likely to feel anxious when doing leisure activities with peers. Interestingly, autistic adolescents who coped better with challenges tended to feel less competent in social situations. However, those better able to meet their needs for growth tended to perceive their social competence positively. These findings can help practitioners develop strategies and programs to reduce the negative social experiences of autistic adolescents by helping them cope better.
Autism, Ahead of Print.
Individuals who cope well with challenges may engage in social situations more successfully. We examined the association between coping behaviors, self-perceived competence, and social anxiety in everyday social situations. A total of 133 participants between the ages of 10 and 16 years (82 autistic, 51 neurotypical) carried a mobile device that prompted them seven times each day for 7 days to record what they were doing and their perceived competence and social anxiety in that situation. We used the Coping Inventory to measure overall coping abilities (i.e. coping with the self and the environment). Multilevel analyses found that autistic adolescents were more likely than neurotypical peers to experience social anxiety while engaged in maintenance or productive activities with adults. While their ability to cope with the self was positively associated with perceived social competence, it was negatively associated with the ability to cope with environmental challenges. Furthermore, autistic adolescents with poor ability to cope with environmental challenges were more likely than those who coped well to be socially anxious when engaged in leisure activities with peers. Findings from this study can guide evaluation and intervention to improve the social experiences of autistic adolescents by helping them increase coping skills.Lay abstractIndividuals who cope well with challenges may engage in social situations more successfully. We examined how well autistic adolescents coped, depending on how competent they felt and how much anxiety they experienced during social activities. We included 133 individuals (82 autistic, 51 neurotypical) between the ages of 10 and 16 years. Participants carried a mobile device that prompted them seven times a day for 7 days to record what they were doing, how competent they felt and how much anxiety they experienced. We used the Coping Inventory to understand how well participants coped with environmental challenges and met their needs for growth. Autistic adolescents were more likely than neurotypical peers to feel anxious while doing activities with adults. Autistic adolescents who had more difficulty coping with challenges were more likely to feel anxious when doing leisure activities with peers. Interestingly, autistic adolescents who coped better with challenges tended to feel less competent in social situations. However, those better able to meet their needs for growth tended to perceive their social competence positively. These findings can help practitioners develop strategies and programs to reduce the negative social experiences of autistic adolescents by helping them cope better.
Social self-efficacy and mental well-being in autistic adults: Exploring the role of social identity
- September 20, 2023
Autism, Ahead of Print.
The double empathy problem proposes a lack of shared understanding between autistic and non-autistic people leads to interaction difficulties between them. Social self-efficacy (confidence in one’s social abilities) makes an important contribution to social interactions. Research has shown that autistic people show a social identity (one’s sense of self based on membership of social groups) with other autistic people, and this impacts positively on well-being. In addition, research shows that autistic people have a number of social identities. This study aims to understand whether social self-efficacy relates to mental well-being in autistic adults, and whether social identity plays a role in this relationship. A total of 512 autistic adults completed measures of social self-efficacy, social identity, mental well-being and autistic traits. In-group social self-efficacy was found to be higher than out-group social self-efficacy. Second, in-group social self-efficacy was positively associated with well-being. Finally, social identity did not mediate the relationships between social self-efficacy and mental well-being. These findings suggest social self-efficacy may relate to the nature of the group one interacts with. The findings support further research into the relationship between social self-efficacy and well-being, as well as using the double empathy problem as a framework for further investigations in other social groups.Lay abstractIn the past, research has suggested that autistic people are not able to communicate well with non-autistic people because of autistic people’s communication difficulties. However, newer theories question this conclusion. It is now thought that the communication difficulties may be because autistic and non-autistic people both struggle to understand each other. This study explores how these differences in shared understanding relate to autistic people’s mental well-being, confidence in social situations and social identities (groups that we belong to and that influence how we see ourselves). We created an online survey taken by 512 autistic adults, which included questions about their confidence being social with people from different groups (such as other autistic people or people they share a hobby with), about the social groups they felt they belong to and about their mental well-being. First, participants reported higher social confidence when interacting with members of a social group they belonged to. Second, being confident during these interactions was linked to higher mental well-being. Finally, the groups participants belonged to did not influence the link between social confidence and mental well-being. These findings are important as they help us better understand autistic people’s experiences of social interactions and what contributes to good and poor mental well-being in autistic people. They also help us to think further about how to improve autistic people’s well-being.
Autism, Ahead of Print.
The double empathy problem proposes a lack of shared understanding between autistic and non-autistic people leads to interaction difficulties between them. Social self-efficacy (confidence in one’s social abilities) makes an important contribution to social interactions. Research has shown that autistic people show a social identity (one’s sense of self based on membership of social groups) with other autistic people, and this impacts positively on well-being. In addition, research shows that autistic people have a number of social identities. This study aims to understand whether social self-efficacy relates to mental well-being in autistic adults, and whether social identity plays a role in this relationship. A total of 512 autistic adults completed measures of social self-efficacy, social identity, mental well-being and autistic traits. In-group social self-efficacy was found to be higher than out-group social self-efficacy. Second, in-group social self-efficacy was positively associated with well-being. Finally, social identity did not mediate the relationships between social self-efficacy and mental well-being. These findings suggest social self-efficacy may relate to the nature of the group one interacts with. The findings support further research into the relationship between social self-efficacy and well-being, as well as using the double empathy problem as a framework for further investigations in other social groups.Lay abstractIn the past, research has suggested that autistic people are not able to communicate well with non-autistic people because of autistic people’s communication difficulties. However, newer theories question this conclusion. It is now thought that the communication difficulties may be because autistic and non-autistic people both struggle to understand each other. This study explores how these differences in shared understanding relate to autistic people’s mental well-being, confidence in social situations and social identities (groups that we belong to and that influence how we see ourselves). We created an online survey taken by 512 autistic adults, which included questions about their confidence being social with people from different groups (such as other autistic people or people they share a hobby with), about the social groups they felt they belong to and about their mental well-being. First, participants reported higher social confidence when interacting with members of a social group they belonged to. Second, being confident during these interactions was linked to higher mental well-being. Finally, the groups participants belonged to did not influence the link between social confidence and mental well-being. These findings are important as they help us better understand autistic people’s experiences of social interactions and what contributes to good and poor mental well-being in autistic people. They also help us to think further about how to improve autistic people’s well-being.
‘It wasn’t the strategies on their own’: Exploring caregivers’ experiences of accessing services in the development of interventions for autistic people with intellectual disability
- September 15, 2023
Autism, Ahead of Print.
Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers’ experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population.Lay AbstractMany autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to ‘fight’ for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families.
Autism, Ahead of Print.
Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers’ experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population.Lay AbstractMany autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to ‘fight’ for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families.
Changes in the severity of autism symptom domains are related to mental health challenges during middle childhood
- September 11, 2023
Autism, Ahead of Print.
Many autistic children experience changes in core symptom severity across middle childhood, when co-occurring mental health conditions emerge. We evaluated this relationship in 75 autistic children from 6 to 11 years old. Autism symptom severity change was evaluated for total autism symptoms using the autism diagnostic observation schedule calibrated severity score, as well as social-communication symptoms calibrated severity score, and restricted/repetitive behaviors calibrated severity score. Children were grouped based on their symptom severity change patterns. Mental health symptoms (attention-deficit hyperactivity disorder, anxiety, disruptive behavior problems) were assessed via parental interview and questionnaire and compared across the groups. Co-occurring mental health symptoms were more strongly associated with change in social-communication symptom or restricted/repetitive behavior severity than with total autism symptom severity. Two relevant groups were identified. The social-communication symptom-increasing-severity-group (21.3%) had elevated and increasing levels of anxiety, attention-deficit hyperactivity disorder, and disruptive behavior problems compared with children with stable social-communication symptom severity. The restricted/repetitive behavior-decreasing-severity-group (22.7%) had elevated and increasing levels of anxiety; 94% of these children met criteria for an anxiety disorder. Autism symptom severity change during middle childhood is associated with co-occurring mental health symptoms. Children that increase in social-communication symptom severity are also likely to demonstrate greater psychopathology, while decreases in restricted/repetitive behavior severity are associated with higher levels of anxiety.Lay abstractFor many autistic children, the severity of their autism symptoms changes during middle childhood. We studied whether these changes are associated with the emergence of other mental health challenges such as anxiety and attention-deficit hyperactivity disorder. Children who had increased social-communication challenges had more anxiety and attention-deficit hyperactivity disorder symptoms and disruptive behavior problems than other children. Children who decreased their restricted and repetitive behaviors, on the contrary, had more anxiety. We discuss why these changes in autism symptoms may lead to increases in other mental health concerns.
Autism, Ahead of Print.
Many autistic children experience changes in core symptom severity across middle childhood, when co-occurring mental health conditions emerge. We evaluated this relationship in 75 autistic children from 6 to 11 years old. Autism symptom severity change was evaluated for total autism symptoms using the autism diagnostic observation schedule calibrated severity score, as well as social-communication symptoms calibrated severity score, and restricted/repetitive behaviors calibrated severity score. Children were grouped based on their symptom severity change patterns. Mental health symptoms (attention-deficit hyperactivity disorder, anxiety, disruptive behavior problems) were assessed via parental interview and questionnaire and compared across the groups. Co-occurring mental health symptoms were more strongly associated with change in social-communication symptom or restricted/repetitive behavior severity than with total autism symptom severity. Two relevant groups were identified. The social-communication symptom-increasing-severity-group (21.3%) had elevated and increasing levels of anxiety, attention-deficit hyperactivity disorder, and disruptive behavior problems compared with children with stable social-communication symptom severity. The restricted/repetitive behavior-decreasing-severity-group (22.7%) had elevated and increasing levels of anxiety; 94% of these children met criteria for an anxiety disorder. Autism symptom severity change during middle childhood is associated with co-occurring mental health symptoms. Children that increase in social-communication symptom severity are also likely to demonstrate greater psychopathology, while decreases in restricted/repetitive behavior severity are associated with higher levels of anxiety.Lay abstractFor many autistic children, the severity of their autism symptoms changes during middle childhood. We studied whether these changes are associated with the emergence of other mental health challenges such as anxiety and attention-deficit hyperactivity disorder. Children who had increased social-communication challenges had more anxiety and attention-deficit hyperactivity disorder symptoms and disruptive behavior problems than other children. Children who decreased their restricted and repetitive behaviors, on the contrary, had more anxiety. We discuss why these changes in autism symptoms may lead to increases in other mental health concerns.
Mental health counseling is rated as most helpful by autistic adults: Service perspectives in adulthood
- September 08, 2023
Autism, Ahead of Print.
The growing number of autistic adults challenges the limited adult service system. While data on service use and barriers are available, there is limited information from the individual’s perspective on which services are most helpful in adulthood and how service use is connected to community participation outcomes. Forty autistic adults participated in a study combining global positioning system community participation measures with survey and interview data on service use, including which services are most helpful in adulthood, barriers to services, and service needs. Participation outcomes were analyzed relative to demographics, number and types of services received in the past 2 years, and current mental health service use. Participants received an average of two services in the past 2 years, most frequently mental health and employment services. Individuals currently seeing a mental health counselor were more likely to be working full-time and visit more community locations compared to those who were not seeing a counselor. Participants reported mental health services as the most helpful service received in adulthood followed by employment services. While an emphasis is often placed on employment services in the transition to adulthood, findings suggest a need for integrated mental health and employment services for autistic adults.Lay AbstractThe number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2 years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults.
Autism, Ahead of Print.
The growing number of autistic adults challenges the limited adult service system. While data on service use and barriers are available, there is limited information from the individual’s perspective on which services are most helpful in adulthood and how service use is connected to community participation outcomes. Forty autistic adults participated in a study combining global positioning system community participation measures with survey and interview data on service use, including which services are most helpful in adulthood, barriers to services, and service needs. Participation outcomes were analyzed relative to demographics, number and types of services received in the past 2 years, and current mental health service use. Participants received an average of two services in the past 2 years, most frequently mental health and employment services. Individuals currently seeing a mental health counselor were more likely to be working full-time and visit more community locations compared to those who were not seeing a counselor. Participants reported mental health services as the most helpful service received in adulthood followed by employment services. While an emphasis is often placed on employment services in the transition to adulthood, findings suggest a need for integrated mental health and employment services for autistic adults.Lay AbstractThe number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2 years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults.
Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda
- September 08, 2023
Autism, Ahead of Print.
This article outlines a stakeholder-created research agenda to guide future early intervention research for autistic children. We collaborated with 10 autism service providers, 10 parents of individuals with autism, and 10 autistic people across a total of 18 small group and 2 inter-group meetings occurring over 2 years. Together, we synthesized results from (1) these stakeholder workshops and (2) a survey completed by 237 autistic adults, autism providers, caregivers, and autism researchers in the United States. The finalized research agenda includes (1) Guiding Principles, (2) Research Priorities, and (3) Systems Implications. The full version of the early intervention autism research agenda is available in Supplemental Material. In this article, we summarize the main points of the research agenda and discuss unique themes highlighted by stakeholders in considering early autism intervention research. Finally, we highlight the need to include stakeholders in decision-making and consultant positions throughout the research process to align future work most directly and optimally with the goals and needs of the autism community. We have gathered guidance directly from our stakeholders and experiences with Project Stakeholders Engaging in Early Intervention Research (STEER) into a researcher workbook which we hope may facilitate these efforts. This workbook is available in Supplemental Material.Lay abstractIn this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material.
Autism, Ahead of Print.
This article outlines a stakeholder-created research agenda to guide future early intervention research for autistic children. We collaborated with 10 autism service providers, 10 parents of individuals with autism, and 10 autistic people across a total of 18 small group and 2 inter-group meetings occurring over 2 years. Together, we synthesized results from (1) these stakeholder workshops and (2) a survey completed by 237 autistic adults, autism providers, caregivers, and autism researchers in the United States. The finalized research agenda includes (1) Guiding Principles, (2) Research Priorities, and (3) Systems Implications. The full version of the early intervention autism research agenda is available in Supplemental Material. In this article, we summarize the main points of the research agenda and discuss unique themes highlighted by stakeholders in considering early autism intervention research. Finally, we highlight the need to include stakeholders in decision-making and consultant positions throughout the research process to align future work most directly and optimally with the goals and needs of the autism community. We have gathered guidance directly from our stakeholders and experiences with Project Stakeholders Engaging in Early Intervention Research (STEER) into a researcher workbook which we hope may facilitate these efforts. This workbook is available in Supplemental Material.Lay abstractIn this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material.
‘Let me tell you, I see echolalia as being a part of my son’s identity’: Exploring echolalia as an expression of neurodiversity from a parental perspective
- September 07, 2023
Autism, Ahead of Print.
Echolalia has been described as the repetition of words, phrases, songs or other more elaborate dialogues uttered by another person, which may be immediate or delayed (International Classification of Diseases, 11th Revision; Diagnostic and Statistical Manual of Mental Disorders, 5th ed.). Some classify echolalia as a communication impairment reflective of delay, while others consider it a restricted, repetitive pattern of behaviours, without meaningful communicative function. Little attention is given to the experiences of non-clinicians, such as parents or teachers who may hold valuable insights to further our understanding of this phenomenon. This study forms part of a larger programme of inquiry which interviewed parents (N = 133) about their experiences of their sons’ and daughters’ echolalia. Using hermeneutic phenomenological analysis in an abductive framework, we present a perspective of echolalia that has largely remained silent in literature: echolalia as an expression of neurodiversity. Participants push back against the status quo of intervention, reclaiming echolalia as being a part of their child’s identity. Participants want their children to not only enjoy their echolalia but to fully embrace it as being a part of their individual identity. We propose alternatives to a purely clinical perspective of echolalia; alternatives that may place the neurodiversity-affirmative perspectives of our participants in a co-existing tension with clinicians.Lay abstractEcholalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment. In our research, we identified that not all parents want their children’s echolalia to be modified. Some parents want their child to be able to enjoy echolalia and others don’t want anyone to intervene because they see it as something that makes their child unique and being unique is something to be celebrated. We believe that there might be a way for speech and language services who want to modify echolalia and the parents in our study who do not want their child’s echolalia to be modified, to be able to exist side-by-side.
Autism, Ahead of Print.
Echolalia has been described as the repetition of words, phrases, songs or other more elaborate dialogues uttered by another person, which may be immediate or delayed (International Classification of Diseases, 11th Revision; Diagnostic and Statistical Manual of Mental Disorders, 5th ed.). Some classify echolalia as a communication impairment reflective of delay, while others consider it a restricted, repetitive pattern of behaviours, without meaningful communicative function. Little attention is given to the experiences of non-clinicians, such as parents or teachers who may hold valuable insights to further our understanding of this phenomenon. This study forms part of a larger programme of inquiry which interviewed parents (N = 133) about their experiences of their sons’ and daughters’ echolalia. Using hermeneutic phenomenological analysis in an abductive framework, we present a perspective of echolalia that has largely remained silent in literature: echolalia as an expression of neurodiversity. Participants push back against the status quo of intervention, reclaiming echolalia as being a part of their child’s identity. Participants want their children to not only enjoy their echolalia but to fully embrace it as being a part of their individual identity. We propose alternatives to a purely clinical perspective of echolalia; alternatives that may place the neurodiversity-affirmative perspectives of our participants in a co-existing tension with clinicians.Lay abstractEcholalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment. In our research, we identified that not all parents want their children’s echolalia to be modified. Some parents want their child to be able to enjoy echolalia and others don’t want anyone to intervene because they see it as something that makes their child unique and being unique is something to be celebrated. We believe that there might be a way for speech and language services who want to modify echolalia and the parents in our study who do not want their child’s echolalia to be modified, to be able to exist side-by-side.
Predicting the financial wellbeing of autistic adults: Part I
- September 04, 2023
Autism, Ahead of Print.
Many autistic adults are likely to experience poor financial wellbeing and hardship due to unemployment and under-employment. Research in the general population demonstrates that subjective financial wellbeing—how people perceive their financial situation—influences quality of life. There is no research, however, examining the subjective financial wellbeing of autistic people. This study therefore aimed to (1) understand the subjective financial wellbeing of a sample of autistic adults living in Australia compared to a general Australian population sample and (2) identify the predictors of subjective financial wellbeing in this sample of autistic adults. To this end, 191 autistic adults aged 18–83 years (mean = 39.28, standard deviation = 11.74) completed an online survey about their economic status, financial wellbeing, financial behaviors, confidence in money management skills, and anxiety and depression symptoms. Almost half of our sample felt it was a struggle to make ends meet, whereas only one-third of the general Australian population felt this way. Similar to the general population, autistic people’s income and their financial behaviors (specifically, saving and not borrowing for everyday expenses) predicted their sense of financial wellbeing. Our findings have implications for both research and practice.Lay abstractResearchers have found the way people feel about their financial situation is related to their quality of life. We know that many autistic people find it hard to find a job. And for those autistic people who have a job, they are often underpaid. Not having a job or being underpaid often means having low income. Having low income is likely to influence how autistic people feel about their financial situation. However, no research has looked at these issues for autistic people. This is the first study that helps us learn more about what autistic adults think about their financial situation. We looked at autistic people’s thoughts on this issue compared to people from the general Australian population. We also looked at what things might impact how autistic people feel about their financial situation—which might be how much money they earn, what they do with that money, and their mental health. Many autistic adults felt they were struggling with financial wellbeing and this was connected both to the level of their income and how they said they managed their money. Those who were able to save and not borrow for everyday expenses reported feeling a greater sense of financial wellbeing. Concrete changes might help to improve autistic people’s financial wellbeing. We need to investigate how we can help autistic people find and keep well-paying jobs. And we need to work out the best ways of equipping autistic people with the skills they need in financial matters.
Autism, Ahead of Print.
Many autistic adults are likely to experience poor financial wellbeing and hardship due to unemployment and under-employment. Research in the general population demonstrates that subjective financial wellbeing—how people perceive their financial situation—influences quality of life. There is no research, however, examining the subjective financial wellbeing of autistic people. This study therefore aimed to (1) understand the subjective financial wellbeing of a sample of autistic adults living in Australia compared to a general Australian population sample and (2) identify the predictors of subjective financial wellbeing in this sample of autistic adults. To this end, 191 autistic adults aged 18–83 years (mean = 39.28, standard deviation = 11.74) completed an online survey about their economic status, financial wellbeing, financial behaviors, confidence in money management skills, and anxiety and depression symptoms. Almost half of our sample felt it was a struggle to make ends meet, whereas only one-third of the general Australian population felt this way. Similar to the general population, autistic people’s income and their financial behaviors (specifically, saving and not borrowing for everyday expenses) predicted their sense of financial wellbeing. Our findings have implications for both research and practice.Lay abstractResearchers have found the way people feel about their financial situation is related to their quality of life. We know that many autistic people find it hard to find a job. And for those autistic people who have a job, they are often underpaid. Not having a job or being underpaid often means having low income. Having low income is likely to influence how autistic people feel about their financial situation. However, no research has looked at these issues for autistic people. This is the first study that helps us learn more about what autistic adults think about their financial situation. We looked at autistic people’s thoughts on this issue compared to people from the general Australian population. We also looked at what things might impact how autistic people feel about their financial situation—which might be how much money they earn, what they do with that money, and their mental health. Many autistic adults felt they were struggling with financial wellbeing and this was connected both to the level of their income and how they said they managed their money. Those who were able to save and not borrow for everyday expenses reported feeling a greater sense of financial wellbeing. Concrete changes might help to improve autistic people’s financial wellbeing. We need to investigate how we can help autistic people find and keep well-paying jobs. And we need to work out the best ways of equipping autistic people with the skills they need in financial matters.
Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals
- September 04, 2023
Autism, Ahead of Print.
Autistic individuals often experience challenges in social communication and interaction, and there is growing evidence that specific interests can help them regulate these difficulties. However, it is unclear what specific properties of these interests make them suitable for this role. In this qualitative study, we conducted semi-structured interviews with nine autistic individuals to explore the social functions of their specific interests. Data analysis followed Grounded Theory and Interpretative Phenomenological Analysis principles. Our analysis revealed that these interests have two important functions in social communication and interaction. On one hand, they provide a means of disconnecting from the often-distressing challenges in the social outside world. On the other hand, specific interests serve as a social compass: they provide structure and meaning to social reality, can foster a sense of connection with others, and provide an entryway for social participation. Based on these findings, we propose a conceptual model suggesting that specific interests enhance the experience of a psychological boundary between oneself and others, which contributes to a sense of safety during social interactions. Our study suggests that incorporating specific interests into therapeutic interventions can improve the social communication and interaction of autistic individuals, without losing sight of their personal well-being.Lay abstractGrowing evidence shows that specific interests can help autistic individuals cope with difficulties in social communication and interaction. However, it is unclear which specific characteristics of these interests make them suitable for this coping role. Therefore, this study explored how specific interests can help autistic individuals navigate social communication and interaction. We conducted semi-structured interviews with nine autistic individuals to inquire about their perspectives on the meanings and functions of their specific interest in their (social) life. We found that specific interests served two important social functions. First, the interests provided a way to disconnect from the challenging outside world, through a shift in the attentional focus of participants. Second, the interests served as a “social compass,” providing structure and meaning to social situations and helping the participants feel more connected to others. Based on these findings, we propose a conceptual model suggesting that specific interests create the experience of a “protective boundary” between oneself and others, which helps autistic individuals feel safe during social interactions. Namely, engaging in specific interests not only creates a space where autistic individuals can retreat when they feel overwhelmed, but also provides a framework with delineations in time and space, as well as explicit rules for social interactions, which make them more predictable and regulated. The study suggests that incorporating specific interests into therapy can help improve social communication and interaction for autistic individuals while still prioritizing their personal well-being.
Autism, Ahead of Print.
Autistic individuals often experience challenges in social communication and interaction, and there is growing evidence that specific interests can help them regulate these difficulties. However, it is unclear what specific properties of these interests make them suitable for this role. In this qualitative study, we conducted semi-structured interviews with nine autistic individuals to explore the social functions of their specific interests. Data analysis followed Grounded Theory and Interpretative Phenomenological Analysis principles. Our analysis revealed that these interests have two important functions in social communication and interaction. On one hand, they provide a means of disconnecting from the often-distressing challenges in the social outside world. On the other hand, specific interests serve as a social compass: they provide structure and meaning to social reality, can foster a sense of connection with others, and provide an entryway for social participation. Based on these findings, we propose a conceptual model suggesting that specific interests enhance the experience of a psychological boundary between oneself and others, which contributes to a sense of safety during social interactions. Our study suggests that incorporating specific interests into therapeutic interventions can improve the social communication and interaction of autistic individuals, without losing sight of their personal well-being.Lay abstractGrowing evidence shows that specific interests can help autistic individuals cope with difficulties in social communication and interaction. However, it is unclear which specific characteristics of these interests make them suitable for this coping role. Therefore, this study explored how specific interests can help autistic individuals navigate social communication and interaction. We conducted semi-structured interviews with nine autistic individuals to inquire about their perspectives on the meanings and functions of their specific interest in their (social) life. We found that specific interests served two important social functions. First, the interests provided a way to disconnect from the challenging outside world, through a shift in the attentional focus of participants. Second, the interests served as a “social compass,” providing structure and meaning to social situations and helping the participants feel more connected to others. Based on these findings, we propose a conceptual model suggesting that specific interests create the experience of a “protective boundary” between oneself and others, which helps autistic individuals feel safe during social interactions. Namely, engaging in specific interests not only creates a space where autistic individuals can retreat when they feel overwhelmed, but also provides a framework with delineations in time and space, as well as explicit rules for social interactions, which make them more predictable and regulated. The study suggests that incorporating specific interests into therapy can help improve social communication and interaction for autistic individuals while still prioritizing their personal well-being.
Using adaptive behavior scores to convey level of functioning in children with autism spectrum disorder: Evidence from the Study to Explore Early Development
- August 23, 2023
Autism, Ahead of Print.
We examined relationships between measures of adaptive behavior, cognitive ability, and autism symptom severity in 1458 preschool-aged children with autism from the Study to Explore Early Development. While publications commonly describe autistic children as “low-” or “high-functioning” based on cognitive ability, relying solely on cognitive scores may obscure meaningful variation in functioning. We found significant heterogeneity in adaptive behavior scores of children with cognitive scores both above and below the threshold of two or more standard deviations below the population mean specified in the diagnostic criteria for intellectual disability (ID). Although cognitive and adaptive behavior scores were strongly associated in our sample, considerable variation in overall adaptive behavior and more than half in socialization and motor skills was unaccounted for by cognitive ability, autism symptom severity, and other covariates. Among children who could be designated “low-functioning” based on cognitive scores, 39.7% had composite adaptive behavior scores indicating no significant delays, while among those who might be designated “high-functioning,” 9.0% had significant delays in overall adaptive behavior and 22.2% in socialization. These results suggest adaptive behavior scores capture variations in the autism phenotype not accounted for by other measures we considered.Lay AbstractAutistic people are often described as “low-” or “high-functioning” based on their scores on cognitive tests. These terms are common in publications and in everyday communication. However, recent research and feedback from the autistic community suggests that relying on cognitive ability alone to describe functioning may miss meaningful differences in the abilities of autistic children and adults and in the kinds of support they may need. Additional methods are needed to describe “functioning” in autistic children. We examined whether scores from a test measuring adaptive behaviors would provide information on the functional abilities of children with autism that is different from cognitive ability and autism symptom severity. Adaptive behaviors include age-appropriate skills that allow people to function in their everyday lives and social interactions. We found that a large amount of the variation in adaptive behavior scores was not explained by cognitive development, autism symptom severity, and behavioral and emotional problems. In addition, there was a wide range of adaptive ability levels in children with autism in our study, including in those with low, average, or high cognitive scores. Our results suggest that adaptive behavior scores could provide useful information about the strengths and support needs of autistic children above and beyond measures of cognitive ability and autism symptom severity. Adaptive behavior scores provide important information on the needs of autistic people.
Autism, Ahead of Print.
We examined relationships between measures of adaptive behavior, cognitive ability, and autism symptom severity in 1458 preschool-aged children with autism from the Study to Explore Early Development. While publications commonly describe autistic children as “low-” or “high-functioning” based on cognitive ability, relying solely on cognitive scores may obscure meaningful variation in functioning. We found significant heterogeneity in adaptive behavior scores of children with cognitive scores both above and below the threshold of two or more standard deviations below the population mean specified in the diagnostic criteria for intellectual disability (ID). Although cognitive and adaptive behavior scores were strongly associated in our sample, considerable variation in overall adaptive behavior and more than half in socialization and motor skills was unaccounted for by cognitive ability, autism symptom severity, and other covariates. Among children who could be designated “low-functioning” based on cognitive scores, 39.7% had composite adaptive behavior scores indicating no significant delays, while among those who might be designated “high-functioning,” 9.0% had significant delays in overall adaptive behavior and 22.2% in socialization. These results suggest adaptive behavior scores capture variations in the autism phenotype not accounted for by other measures we considered.Lay AbstractAutistic people are often described as “low-” or “high-functioning” based on their scores on cognitive tests. These terms are common in publications and in everyday communication. However, recent research and feedback from the autistic community suggests that relying on cognitive ability alone to describe functioning may miss meaningful differences in the abilities of autistic children and adults and in the kinds of support they may need. Additional methods are needed to describe “functioning” in autistic children. We examined whether scores from a test measuring adaptive behaviors would provide information on the functional abilities of children with autism that is different from cognitive ability and autism symptom severity. Adaptive behaviors include age-appropriate skills that allow people to function in their everyday lives and social interactions. We found that a large amount of the variation in adaptive behavior scores was not explained by cognitive development, autism symptom severity, and behavioral and emotional problems. In addition, there was a wide range of adaptive ability levels in children with autism in our study, including in those with low, average, or high cognitive scores. Our results suggest that adaptive behavior scores could provide useful information about the strengths and support needs of autistic children above and beyond measures of cognitive ability and autism symptom severity. Adaptive behavior scores provide important information on the needs of autistic people.
Post-traumatic stress disorder and experiences involving violence or sexual abuse in a clinical sample of autistic adults with intellectual disabilities: Prevalence and clinical correlates
- August 23, 2023
Autism, Ahead of Print.
Autistic people appear to be at increased risk of post-traumatic stress disorder, and experiences involving violence or sexual abuse appear to be common in this population. However, knowledge concerning trauma in autistic people with co-occurring intellectual disabilities is limited. In this cross-sectional study, we explored the prevalence of post-traumatic stress disorder, as well as the prevalence and clinical correlates of reported experiences of violence and sexual abuse, in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only three participants (3.4%) were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of ‘challenging’ behaviours (Aberrant Behaviour Checklist). These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population.Lay abstractPost-traumatic stress disorder is a mental health disorder that may be triggered by the experience of events perceived as terrifying or overwhelming. Examples of such events include being the victim of violence or sexual abuse. Compared with other people, autistic people have increased risk of being exposed to violence or sexual abuse. In addition, autistic people may be more vulnerable to developing post-traumatic stress disorder following such exposure. However, knowledge is limited concerning the prevalence of experiences involving violence and sexual abuse, and post-traumatic stress disorder, in autistic people with co-occurring intellectual disabilities. Detection of these experiences, and identification of post-traumatic stress disorder, may be challenging in these individuals, and previous research indicates that post-traumatic stress disorder symptoms may be overlooked or misinterpreted. In this study, we examined prevalence of post-traumatic stress disorder, violence and sexual abuse in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only 3.4% were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of ‘challenging’ behaviours. These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment, and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population.
Autism, Ahead of Print.
Autistic people appear to be at increased risk of post-traumatic stress disorder, and experiences involving violence or sexual abuse appear to be common in this population. However, knowledge concerning trauma in autistic people with co-occurring intellectual disabilities is limited. In this cross-sectional study, we explored the prevalence of post-traumatic stress disorder, as well as the prevalence and clinical correlates of reported experiences of violence and sexual abuse, in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only three participants (3.4%) were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of ‘challenging’ behaviours (Aberrant Behaviour Checklist). These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population.Lay abstractPost-traumatic stress disorder is a mental health disorder that may be triggered by the experience of events perceived as terrifying or overwhelming. Examples of such events include being the victim of violence or sexual abuse. Compared with other people, autistic people have increased risk of being exposed to violence or sexual abuse. In addition, autistic people may be more vulnerable to developing post-traumatic stress disorder following such exposure. However, knowledge is limited concerning the prevalence of experiences involving violence and sexual abuse, and post-traumatic stress disorder, in autistic people with co-occurring intellectual disabilities. Detection of these experiences, and identification of post-traumatic stress disorder, may be challenging in these individuals, and previous research indicates that post-traumatic stress disorder symptoms may be overlooked or misinterpreted. In this study, we examined prevalence of post-traumatic stress disorder, violence and sexual abuse in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only 3.4% were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of ‘challenging’ behaviours. These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment, and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population.
‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis
- August 22, 2023
Autism, Ahead of Print.
Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020−2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society’s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody’s responsibility to challenge negative stereotypes and promote a more inclusive society.Lay abstractAutism disclosure – that is sharing their autism diagnosis or identity with a person or people – is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to.
Autism, Ahead of Print.
Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020−2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society’s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody’s responsibility to challenge negative stereotypes and promote a more inclusive society.Lay abstractAutism disclosure – that is sharing their autism diagnosis or identity with a person or people – is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to.
Fewer children with autism spectrum disorder with motor challenges receive physical and recreational therapies compared to standard therapies: A SPARK data set analysis
- August 22, 2023
Autism, Ahead of Print.
Approximately 85% of children with autism spectrum disorder from the SPARK study receiving standard interventions such as speech-language and occupational therapies. In contrast, only 32%–13% of children with autism spectrum disorder received movement therapies such as physical and recreational therapies, respectively. Little is known about how service receipt changes as a function of children’s motor difficulties. Parents of children with autism spectrum disorder completed online surveys to provide a report of their child’s motor difficulties using the Developmental Coordination Disorder–Questionnaire as well as the various therapies their child received (speech-language therapy, occupational therapy, physical therapy, applied behavioral analysis, social skill interventions, recreational therapy) by location (at school, privately/in community, or both). While movement therapies (occupational therapy, physical therapy, recreational therapy) increased with increasing motor risk and severity, there continued to be large disparities in physical therapy (37%–55%) and recreational therapy (15%–19%) compared to occupational therapy (85%–92%) across various settings indicating clear unmet needs for specific motor services given that 88.3% of this sample of children with autism spectrum disorder is at risk for motor difficulties/Developmental Coordination Disorder. Developmental Coordination Disorder–Questionnaire fine- and gross-motor subscale scores were fairly comparably affected yet physical therapy/recreational therapy were less received versus occupational therapy. These findings explain the paucity of physical therapy/recreational therapy and physical activity programs for individuals with autism spectrum disorder and the need for movement experts to receive appropriate access and training to work with individuals with autism spectrum disorder.Lay AbstractThere are clear disparities in motor services provided to children with autism spectrum disorder (physical and recreational therapies) compared to their standard therapies (speech-language and occupational therapies). Children with autism spectrum disorder need greater access to and funding for motor services (physical and recreational therapies) and physical activity programs. Movement experts including PTs, adapted physical educators, and community exercise/sports coaches/professionals need basic, specialized, and continuing education training to meet the needs of children and adults with autism spectrum disorder not only for providing early developmental and school-based services but also for ensuring appropriate built environments and providing general physical therapy/adapted physical education services as well as physical activity programs.
Autism, Ahead of Print.
Approximately 85% of children with autism spectrum disorder from the SPARK study receiving standard interventions such as speech-language and occupational therapies. In contrast, only 32%–13% of children with autism spectrum disorder received movement therapies such as physical and recreational therapies, respectively. Little is known about how service receipt changes as a function of children’s motor difficulties. Parents of children with autism spectrum disorder completed online surveys to provide a report of their child’s motor difficulties using the Developmental Coordination Disorder–Questionnaire as well as the various therapies their child received (speech-language therapy, occupational therapy, physical therapy, applied behavioral analysis, social skill interventions, recreational therapy) by location (at school, privately/in community, or both). While movement therapies (occupational therapy, physical therapy, recreational therapy) increased with increasing motor risk and severity, there continued to be large disparities in physical therapy (37%–55%) and recreational therapy (15%–19%) compared to occupational therapy (85%–92%) across various settings indicating clear unmet needs for specific motor services given that 88.3% of this sample of children with autism spectrum disorder is at risk for motor difficulties/Developmental Coordination Disorder. Developmental Coordination Disorder–Questionnaire fine- and gross-motor subscale scores were fairly comparably affected yet physical therapy/recreational therapy were less received versus occupational therapy. These findings explain the paucity of physical therapy/recreational therapy and physical activity programs for individuals with autism spectrum disorder and the need for movement experts to receive appropriate access and training to work with individuals with autism spectrum disorder.Lay AbstractThere are clear disparities in motor services provided to children with autism spectrum disorder (physical and recreational therapies) compared to their standard therapies (speech-language and occupational therapies). Children with autism spectrum disorder need greater access to and funding for motor services (physical and recreational therapies) and physical activity programs. Movement experts including PTs, adapted physical educators, and community exercise/sports coaches/professionals need basic, specialized, and continuing education training to meet the needs of children and adults with autism spectrum disorder not only for providing early developmental and school-based services but also for ensuring appropriate built environments and providing general physical therapy/adapted physical education services as well as physical activity programs.
Erratum to “The ‘Double Empathy Problem’: Ten Years On”
- December 27, 2022
Autism, Ahead of Print.
Autism, Ahead of Print.
Re: Caron et al. (2021) sociocultural context and autistics quality of life: A comparison between Quebec and France
- October 22, 2021
Autism, Ahead of Print.
The purpose of this letter to the editors is to highlight to the readership of Autism the recommended use of the Autism Quality of Life measure for research with autistic adults. The Autism Quality of Life was developed for use alongside the WHOQoL-BREF and WHO Disabilities module. The letter raises some concerns about the use of the Autism Quality of Life as a stand-alone measure in a recent study by Caron et al. published in Autism.
Orders received after 10:00 AM E Monday will be mailed the following Monday from Florida.
Autism, Ahead of Print.
The purpose of this letter to the editors is to highlight to the readership of Autism the recommended use of the Autism Quality of Life measure for research with autistic adults. The Autism Quality of Life was developed for use alongside the WHOQoL-BREF and WHO Disabilities module. The letter raises some concerns about the use of the Autism Quality of Life as a stand-alone measure in a recent study by Caron et al. published in Autism.
Copyright © 2024 MentalHealthCE.com
X
Timing of Shipment of Orders:
Orders received before 10:00 AM E Monday are mailed via USPS that Monday from Florida.Orders received after 10:00 AM E Monday will be mailed the following Monday from Florida.