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Autism
Journal Prestige (SJR): 1.739
Citation Impact (citeScore): 4
Number of Followers: 164  
 
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1362-3613 - ISSN (Online) 1461-7005
Published by Sage Publications Homepage  [1174 journals]
  • Clinical reflections on the intersections of autism and personality
           development

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      Authors: Meng-Chuan Lai
      Pages: 739 - 742
      Abstract: Autism, Volume 26, Issue 4, Page 739-742, May 2022.

      Citation: Autism
      PubDate: 2022-04-13T11:34:30Z
      DOI: 10.1177/13623613221088073
      Issue No: Vol. 26, No. 4 (2022)
       
  • Leisure, employment, community participation and quality of life in
           caregivers of autistic children: A scoping review

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      Authors: Gemma Davy, Katy L Unwin, Josephine Barbaro, Cheryl Dissanayake
      Abstract: Autism, Ahead of Print.
      Parenting an autistic child can reduce the time parents have to participate in their own interests, but the impact this has on caregiver quality of life is not well understood. The aim in undertaking this scoping review was to examine and describe current research about occupational participation and quality of life among parents of autistic children. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension guidelines, a comprehensive search of multiple databases was conducted with a systematic selection process resulting in a final set of 70 articles. These included publications related to leisure, community and employment occupations, and quality of life in parents and caregivers of autistic children or children with additional needs. The review revealed the impact of caregiving demands and challenges in raising an autistic child that often take priority over the caregiver’s own needs and desires, particularly in occupational participation, which impacts their quality of life. Gaps were identified in the literature on parental occupations and the relationship with quality of life among caregivers of autistic children, particularly fathers. Further investigation into caregiving experiences and examination of the relationship between parental occupations and quality of life in caregivers of autistic children is needed, as the findings can inform the development of suitable supports for them.Lay abstractWe searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child’s needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.
      Citation: Autism
      PubDate: 2022-06-29T06:57:33Z
      DOI: 10.1177/13623613221105836
       
  • Motor stereotypies in autism spectrum disorder: Clinical randomized study
           and classification proposal

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      Authors: Cláudia Melo, Tiago Pinto Ribeiro, Catarina Prior, Camila Gesta, Vânia Martins, Guiomar Oliveira, Teresa Temudo
      Abstract: Autism, Ahead of Print.
      Motor stereotypies are frequently reported in individuals with autism spectrum disorder, but determinants of stereotypies remain poorly understood. In this study, a randomized sample of children with diagnosis of autism spectrum disorder was investigated to identify the prevalence and determinants of stereotypies. A total of 134 children who carried the diagnosis of autism spectrum disorder were included (aged 2.3–17.6 years; 79.1% male). Stereotypies were classified during a standardized protocol with video recording. The prevalence of stereotypies was 56.7%. Among 1198 captured stereotypies, hand/arm stereotypies were the most frequent. Thirty-five morphology patterns were identified, the most frequent being hand flapping, tapping, and jumping. In univariate analysis, an association was found between stereotypies and younger age (odds ratio = 0.74), developmental delay, or intellectual disability (odds ratio = 5.25), being nonverbal (odds ratio = 0.06), epilepsy (odds ratio = 3.89), Autism Diagnostic Interview–Revised-A score (odds ratio = 1.17), Autism Diagnostic Interview–Revised-C score (odds ratio = 1.25), and Autism Diagnostic Observation Schedule–2 score (odds ratio = 1.65). After multivariate analysis, only younger age, being nonverbal, and Autism Diagnostic Interview–Revised-A and Autism Diagnostic Observation Schedule–2 scores remained as determinants of stereotypies. The prevalence of stereotypies in autism spectrum disorder was close to the values obtained in a previous meta-analysis and seems to represent a valid value. The combination of younger age, being nonverbal, and autism severity seems to increase the odds of stereotypies.Lay abstractMotor stereotypies are one of the most frequent features in children with a diagnosis of autism spectrum disorder. They may disrupt children’s functioning and development and be a potential source of stress for families. Several factors, including sex, age, cognitive ability, and severity of autism spectrum disorder, may influence the presence and intensity of stereotypies. The present study aimed to identify the prevalence of motor stereotypies in a group of children with autism spectrum disorder. In addition, it sought to investigate whether sex, age, cognitive ability, verbal language, neurological comorbidities, and severity of autism spectrum disorder were associated with an increased probability and higher number, duration, and variability of stereotypies. A total of 134 participants aged 2.3–17.6 years underwent a clinical protocol with standardized video-recorded sessions. Stereotypies were identified and classified by two independent evaluators. The prevalence of stereotypies was 56.7%, and a total of 1198 motor stereotypies were captured. Children who were younger, nonverbal, and had higher severity of autism spectrum disorder had an increased probability of presenting stereotypies. Being nonverbal or having higher severity of autism spectrum disorder was also associated with presenting a higher number of stereotypies. Children with developmental delay, intellectual disability, or epilepsy displayed longer stereotypies, and children with developmental delay or intellectual disability additionally presented more diverse stereotypies. As part of the study, the authors present a clinical classification model, a glossary, and video samples of motor stereotypies. The findings of this study suggest that children who are younger, nonverbal, have lower cognitive ability, and have higher severity of autism spectrum disorder may have a higher burden of stereotypies. Earlier intervention and monitoring of these children have the potential to improve their long-term outcomes.
      Citation: Autism
      PubDate: 2022-06-28T12:01:51Z
      DOI: 10.1177/13623613221105479
       
  • Serving the underserved: How can we reach autism families who systemically
           miss out on support'

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      Authors: Rosa A. Hoekstra
      Abstract: Autism, Ahead of Print.

      Citation: Autism
      PubDate: 2022-06-25T12:24:57Z
      DOI: 10.1177/13623613221105389
       
  • The autistic experience of homelessness: Implications from a narrative
           enquiry

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      Authors: Beth Stone, Ailsa Cameron, Sandra Dowling
      Abstract: Autism, Ahead of Print.
      Emerging research suggests autistic people are disproportionately represented in homeless populations. Less is known about how autistic people experience homelessness and what prevents them from exiting homelessness. This article presents findings from a narrative enquiry investigating the link between autism and homelessness. Ten autistic adults consented to participate in narrative interviews which explored their life histories and pathways through homelessness. This article considers how participants experienced rough sleeping and sofa surfing before attempting to access hostels. It then examines how participants navigated support systems, arguing that barriers to accessing services perpetuated homelessness. Because of these barriers, some participants disengaged with services, preferring to sleep rough. The extent to which participants could be said to have ‘chosen’ homelessness is balanced with consideration of the lack of autonomy autistic adults are able to exercise over their lives. This article concludes with discussion of practical implications for services and policy in England.Lay AbstractRecent research suggests many autistic people experience homelessness. However, little is known about the types of homelessness autistic people experience and what barriers autistic people face when trying to exit homelessness. This study involved gathering life stories of autistic people who had experienced homelessness. Ten autistic participants talked about their pathways through homelessness and the difficulties they had in accessing support. After first becoming homeless, participants tended to experience rough sleeping and sofa surfing. When participants approached housing and homelessness services, they were often told they were not eligible for support. This could happen when support workers were not aware of autism, or when autism was not considered ‘severe’ enough. Overcrowding, confrontation and lack of control over routine and environment were particular issues for participants when they entered homelessness hostels. Some participants chose to sleep on the streets rather than stay in environments which increased social anxiety and sensory difficulties. This study discusses ways in which homelessness and housing services can increase accessibility and improve engagement for autistic people. It is important to increase awareness of autism while understanding that autistic people who experience homelessness may have complex needs. In addition, services need to listen to autistic people with lived experience of homelessness to decide what changes will have the most impact.
      Citation: Autism
      PubDate: 2022-06-25T12:23:23Z
      DOI: 10.1177/13623613221105091
       
  • A systematic review of the experiences of autistic young people enrolled
           in mainstream second-level (post-primary) schools

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      Authors: Finbar Horgan, Neil Kenny, Paula Flynn
      Abstract: Autism, Ahead of Print.
      Internationally, there is a growing trend towards the inclusion of autistic pupils within mainstream schools. However, concerns have been expressed regarding this policy roll-out preceding empirical evidence demonstrating effective outcomes for autistic students. Concerns have also been expressed regarding the absence of the voices of autistic pupils themselves within research and policy literature. This review seeks to synthesise evidence from qualitative studies relating to the experiences and perspectives of autistic young people enrolled in mainstream second-level or post-primary education. Searches were carried out on three bibliographic databases: Education Research Complete, Education Resources Information Centre and PsychInfo. One thousand sixty-three studies were identified through a combination of database and hand searches of which 33 met the inclusion criteria for the review. Data were synthesised using ‘thematic synthesis’ and the validity of included studies was assessed using the ‘Critical Appraisal Skills Programme’ (CASP) checklist. Thematic synthesis resulted in the development of three analytical themes: ‘Demands of mainstream placements’, ‘Social participation’ and ‘Impacts on the student’. Our analysis revealed that for many autistic young people, mainstream school is a complex and demanding social environment. Further research conducted in partnership with this cohort is essential as inclusive policy and practice continues to develop.Lay abstractInternationally, more autistic pupils are being educated in mainstream schools. Some people have voiced concerns that this policy roll-out is happening before examining the effective outcomes for autistic students. Concerns have also been expressed regarding a lack of the voices of autistic pupils themselves within research and policy. This study was undertaken in order to gather literature that explores the views and experiences of autistic young people in relation to their mainstream school placement at the secondary level. This study aims to summarise the existing literature and provide a new, more complete account of the school experiences of this cohort. After an extensive search, 33 studies were identified by the authors as meeting a set of inclusion criteria. All of the studies included in this review elicited the views and perspectives of at least one autistic young person regarding their mainstream secondary school placement. Upon carefully analysing these studies, the authors developed three key themes as follows: ‘Demands of mainstream placements’, ‘Social participation’ and ‘Impacts on the student’. Our analysis revealed that for many autistic young people, mainstream school is a complex and demanding social environment. Further research that prioritises the voices and perspectives of this cohort is essential as inclusive policy and practice continues to develop.
      Citation: Autism
      PubDate: 2022-06-25T12:21:23Z
      DOI: 10.1177/13623613221105089
       
  • The experiences of parents raising children with developmental
           disabilities in Ethiopia

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      Authors: Bethlehem Tekola, Mersha Kinfe, Fikirte Girma Bayouh, Charlotte Hanlon, Rosa A Hoekstra
      Abstract: Autism, Ahead of Print.
      The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. Parents’ lived experiences can provide insights into local conceptualizations of developmental disabilities, challenges children and their families face and their needs. This study explores the experiences of parents (14 mothers and 4 fathers) raising children with developmental disabilities in urban and rural Ethiopia using in-depth interviews. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple and intersecting struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed.Lay abstractThe experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. We interviewed 14 mothers and 4 fathers in Addis Ababa and the rural town of Butajira to explore what life is like for parents caring for children with developmental disabilities in Ethiopia. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed.
      Citation: Autism
      PubDate: 2022-06-25T12:10:08Z
      DOI: 10.1177/13623613221105085
       
  • ‘I felt like I deserved it because I was autistic’: Understanding the
           impact of interpersonal victimisation in the lives of autistic people

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      Authors: Amy Pearson, Kieran Rose, Jon Rees
      Abstract: Autism, Ahead of Print.
      Research suggests that there is a high prevalence of interpersonal violence and victimisation within the autistic population, and that this accounts for poor mental health outcomes. This study aimed to examine the impact of interpersonal violence and victimisation on autistic adults from their own perspective and explore what helps or hinders their recovery. In total, 102 autistic adults completed either an online survey or a spoken interview about their experiences of interpersonal violence and victimisation. We analysed the data using a thematic analysis, and found four themes: (1) The usual for autism (expectations of victimisation, experiences of othering), (2) Personhood revoked: The cost of living (being part of a neurominority, trauma, masking and burnout), (3) Unpacking the baggage (impact of hermeneutical injustice) and (4) ‘If you want to make an apple pie from scratch, you have to invent the universe first’ (structural inequality/power dynamics, support and community). Findings highlight the importance of considering the relationship between stigma and victimisation, and the relationship between trauma, masking, and burnout in autistic people. Reducing barriers to support and recovery are contingent on reducing structural inequality and providing better training about autistic people to frontline professionals.Lay abstractResearch suggests that autistic people are more likely to be hurt by someone they know (e.g. a friend or a family member) compared to non-autistic people. In this study, we wanted to know how being hurt by someone you know affects autistic people, and what might help them recover. In total, 102 autistic people took part in an interview, where we asked questions like how being hurt by people they know had made them feel and whether anyone they had asked for help had done a good job of supporting them. We analysed what they had said using thematic analysis, which involved reading what everyone said and looking for common themes. Our findings showed that a lot of autistic people think it is normal to be hurt by people you know because it has happened to them so much. This makes many autistic people feel like they need to mask parts of themselves to stay safe, but this also makes them really exhausted. It took some people a long time to realise what had happened to them was wrong, and it was hard to ask for help. People who did ask for help often had bad experiences with professionals (e.g. police) who did not know much about autistic people. They said better support would come from creating more autistic-run support groups and educating people about autism. These findings are important for working out how to help people who have been hurt by people they know.
      Citation: Autism
      PubDate: 2022-06-23T10:04:28Z
      DOI: 10.1177/13623613221104546
       
  • Theory of mind in naturalistic conversations between autistic and
           typically developing children and adolescents

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      Authors: Diana Alkire, Kathryn A McNaughton, Heather A Yarger, Deena Shariq, Elizabeth Redcay
      Abstract: Autism, Ahead of Print.
      Successful social interactions are assumed to depend on theory of mind—the ability to represent others’ mental states—yet most studies of the relation between theory of mind and social-interactive success rely on non-interactive tasks that do not adequately capture the spontaneous engagement of theory of mind, a crucial component of everyday social interactions. We addressed this gap by establishing a novel observational rating scale to measure the spontaneous use of theory of mind (or lack thereof) within naturalistic conversations (conversational ToM; cToM). In 50 age- and gender-matched dyads of autistic and typically developing youth aged 8–16 years (three dyad types: autistic–typically developing, typically developing–typically developing, autistic–autistic), we assessed cToM during 5-min unstructured conversations. We found that ratings on the cToM Negative scale, reflecting theory-of-mind-related violations of neurotypical conversational norms, were negatively associated with two forms of non-interactive theory of mind: visual-affective and spontaneous. In contrast, the cToM Positive scale, reflecting explicit mental state language and perspective-taking, was not associated with non-interactive theory of mind. Furthermore, autistic youth were rated higher than typically developing youth on cToM Negative, but the groups were rated similarly on cToM Positive. Together, these findings provide insight into multiple aspects of theory of mind in conversation and reveal a nuanced picture of the relative strengths and difficulties among autistic youth.Lay abstractConversation is a key part of everyday social interactions. Previous studies have suggested that conversational skills are related to theory of mind, the ability to think about other people’s mental states, such as beliefs, knowledge, and emotions. Both theory of mind and conversation are common areas of difficulty for autistic people, yet few studies have investigated how people, including autistic people, use theory of mind during conversation. We developed a new way of measuring cToM using two rating scales: cToM Positive captures behaviors that show consideration of a conversation partner’s mental states, such as referring to their thoughts or feelings, whereas cToM Negative captures behaviors that show a lack of theory of mind through violations of neurotypical conversational norms, such as providing too much, too little, or irrelevant information. We measured cToM in 50 pairs of autistic and typically developing children (ages 8–16 years) during 5-min “getting to know you” conversations. Compared to typically developing children, autistic children displayed more frequent cToM Negative behaviors but very similar rates of cToM Positive behaviors. Across both groups, cToM Negative (but not Positive) ratings were related to difficulties in recognizing emotions from facial expressions and a lower tendency to talk about others’ mental states spontaneously (i.e., without being instructed to do so), which suggests that both abilities are important for theory of mind in conversation. Altogether, this study highlights both strengths and difficulties among autistic individuals, and it suggests possible avenues for further research and for improving conversational skills.
      Citation: Autism
      PubDate: 2022-06-20T09:44:01Z
      DOI: 10.1177/13623613221103699
       
  • Predictors of expert providers’ familiarity with intervention practices
           for school- and transition-age youth with autism spectrum disorder

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      Authors: Chelsea M Cooper, Tamara Rosen, Hyunsik Kim, Nicholas R Eaton, Elizabeth Cohn, Amy Drahota, Lauren J Moskowitz, Matthew D Lerner, Connor M Kerns
      Abstract: Autism, Ahead of Print.
      Understanding the types of intervention practices familiar to transdisciplinary autism spectrum disorder providers may be critical to characterize and optimize “usual care” for common clinical concerns (e.g. internalizing, externalizing, and social challenges) among school- and transition-age autistic youth. We assessed if there is an underlying factor structure to expert providers’ familiarity with such practices, and if characteristics of experts (discipline, years’ experience, and school setting) and/or their clients (age and intellectual disability) predicted these factors. Fifty-three expert providers rated their familiarity with 55 practices via an online Delphi poll. Exploratory structural equation modeling identified latent factors of familiarity, which were regressed onto provider and client variables to identify predictors. Four factors emerged: two approaches (cognitive and behavioral) and two strategies (engagement and accessibility). Cognitive approaches were associated with practicing outside school settings and treating clients without intellectual disability, behavioral approaches with practicing in schools and the disciplines of clinical psychology and behavior analysis, engagement strategies with practicing outside school settings, and accessibility strategies with more years in practice. Findings suggest expert transdisciplinary autism spectrum disorder providers are familiar with many of the same approaches and that differences in knowledge are predicted by their discipline, treatment setting, experience, and work with youth with intellectual disabilities.Lay abstractSchool-age children, adolescents, and young adults with autism spectrum disorder encounter many different types of providers in their pursuit of treatment for anxiety, behavior problems, and social difficulties. These providers may all be familiar with different types of intervention practices. However, research has not yet investigated patterns in expert providers’ familiarity with different practices nor how these patterns are related to the characteristics of providers (years in practice, academic discipline, setting) and the youth (age and intellectual disability) they typically support. A panel of 53 expert transdisciplinary providers rated their familiarity with 55 intervention practices (derived from research and expert nominations) via an online Delphi poll. Advanced statistical methods were used to identify types of intervention practices with which providers were familiar, which included two approaches (cognitive and behavioral) and two strategies (engagement and accessibility). Providers who practiced outside a school setting or treated clients without intellectual disability were more familiar with cognitive approaches. Clinical psychologists, behavior analysts, and school-based providers were more familiar with behavioral approaches. Providers practicing outside school settings were also more familiar with engagement strategies, and providers with more years in practice were more familiar with accessibility strategies. These results may help families and researchers to better anticipate how services may vary depending on the types of autism spectrum disorder providers seen and work to reduce disparities in care that may result.
      Citation: Autism
      PubDate: 2022-06-20T09:39:41Z
      DOI: 10.1177/13623613221100787
       
  • Nutrient intake and adequacy in children with autism spectrum disorder:
           EPINED epidemiological study

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      Authors: Victoria Arija, Patricia Esteban-Figuerola, Paula Morales-Hidalgo, Cristina Jardí, Josefa Canals-Sans
      Abstract: Autism, Ahead of Print.
      This article assesses nutritional intake and adequacy in children with autism spectrum disorder (ASD), subdiagnostic autistic symptoms and children with typical development (TD). In total, 77 children diagnosed with ASD, 40 with subdiagnostic autistic symptoms and 333 children with TD were assessed. A validated food frequency questionnaire was used. Very few nutritional differences were found between ASD and TD groups. Preschool children with ASD and subdiagnostic autistic symptoms had slightly lower intake of monounsaturated fatty acids (MUFA), vitamin D and vitamin B12, and primary school children with ASD and subdiagnostic autistic symptoms had slightly higher intake of protein, cholesterol, thiamine and niacin, and a higher percentage of obesity than children with TD. All samples had an unbalanced energy intake (high in added sugars, fats and saturated fatty acids (SFAs); extremely inadequate intake (80%–100%) of vitamins D and E; high intake (50%–80%) of fibre, b-carotene (except preschool children with TD), calcium (except preschool children) and magnesium). The fact that differences between diagnoses are scarce may be related to the low level of ASD severity in this school sample.Lay abstractChildren with autism spectrum disorder (ASD) have a fivefold elevated risk of developing eating problems, which predisposes them to nutritional deficiencies. This study assesses nutritional intake and adequacy in children with ASD, subdiagnostic autistic symptoms and typically developing (TD) children. Preschool children with ASD and subdiagnostic symptoms had slightly lower intake of monounsaturated fatty acids (MUFA), vitamin D and vitamin B12. Primary school children with ASD and subdiagnostic symptoms had slightly higher intake of protein, cholesterol, thiamine and niacin, and a higher percentage of obesity than children with TD. All children had a high intake in sugars, fats and saturated fatty acids; a very highly inadequate intake of vitamins (vitamins D and E), fibre, b-carotene, calcium and magnesium; and a moderately inadequate intake of vitamin C, folate and iron. However, although all children need nutrition advice, children with ASD and subdiagnostic autistic symptoms had a poorer quality diet than those with TD.
      Citation: Autism
      PubDate: 2022-06-20T09:36:47Z
      DOI: 10.1177/13623613221098237
       
  • The impact of autism-related training programs on physician knowledge,
           self-efficacy, and practice behavior: A systematic review

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      Authors: Lauren Clarke, Lawrence K Fung
      Abstract: Autism, Ahead of Print.
      One in 44 children in the United States is diagnosed with autism spectrum disorder. Despite this, physicians receive little clinical training, inclusive of autistic patients. It is therefore not surprising that physicians report low levels of confidence in their ability to provide care to autistic individuals. This review examines the impact of specialized training programs on physicians’ knowledge of autism and their self-efficacy and practice behavior related to caring for autistic patients. A search of MEDLINE, PsycINFO, PubMed, ERIC, Web of Science, and Scopus was performed to identify studies evaluating specialized autism training programs for physicians or physician trainees. Seventeen studies were found to meet the inclusion criteria. The Medical Education Research Study Quality Instrument was utilized to objectively measure the quality of the included studies. Based on the results reported in these studies, specialized autism training programs were associated with positive changes in physician knowledge and self-efficacy related to the care of autistic patients. Other than short-term increases in screening for autism, no other changes in physician behavior were studied. These results call for the development and evaluation of autism training programs that focus on improving physician behavior and patient outcomes.Lay abstractAutism spectrum disorder is estimated to impact 1.5 million children and almost 5.5 million adults. However, most physicians do not receive training on how to provide care to this increasingly large group of people. After performing a systematic review of the literature and screening over 4,500 unique articles focused on the effectiveness of autism-specific training programs designed for physicians and physician trainees, we determined that 17 studies met the pre-determined criteria for inclusion in this systematic review. The results reported by these studies suggest that by completing specialized training programs related to autism, physicians were more knowledgeable on topics related to the condition, more confident in their ability to provide care to autistic individuals, and more likely to screen their patients for autism spectrum disorder. However, further studies with higher quality data are needed to validate these findings and provide additional insight on the ability of these programs to improve physician behavior and patient outcomes. We are therefore advocating that medical educators develop and evaluate specialized autism training programs with an increased focus on improving physician behavior related to all aspects of providing care to autistic people.
      Citation: Autism
      PubDate: 2022-06-14T05:55:16Z
      DOI: 10.1177/13623613221102016
       
  • Predicting intervention use in autistic children: Demographic and
           autism-specific characteristics

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      Authors: Kim M Jonkman, Elisa Back, Sander Begeer
      Abstract: Autism, Ahead of Print.
      Autism is a heterogeneous diagnosis with symptoms that present in different ways. There is a large variety of interventions for autistic individuals. However, little is known about who chooses which specific interventions. We aimed to explore intervention prevalence and predict intervention use, based on demographic and autism-specific characteristics. This study used data on autistic children (N = 1464, aged 1–17 years) from the Netherlands Autism Register. Most children (88%) had received therapies, and about half had received medication. Intervention use was mostly related to additional factors (lower IQ, special education and co-occurring diagnoses). Children with a lower IQ received less therapies, children attending special education or with a co-occurring diagnosis received more therapies. Children in special education or with a co-occurring diagnosis were more likely to receive several types of therapy and medication. Older age, higher IQ and being female were related to more guideline (autism-specific) or mainstream (targeting co-occurring problems) therapy use. Lower parental education was related to more mainstream medication use. More severe sensory issues increased the chance of other medication use. Other autism-specific characteristics (autism severity, social skills, repetitive and restrictive behaviours) were not related to intervention use. More transdiagnostic interventions should be available for children with autism who have additional difficulties.Lay abstractAutism is a condition that is characterised by social communication difficulties and restrictive and repetitive behaviours or interests. Autism can present in many different ways and various interventions are available. Some interventions are conventional, and they are recommended to be used for children with autism (guideline therapies) or for other disorders such as anxiety or attention-deficit hyperactivity disorder (mainstream therapies or medication), while others are less conventional (other therapies or medication, they are discouraged, unknown or alternative). Little is known about who chooses which intervention. This study found that most autistic children use some kind of intervention. Children who attend special education or have an additional diagnosis (other than autism) tend to receive more therapies, while children with a lower IQ receive fewer therapies. Older children, children with a higher IQ and girls are more likely to use conventional (mainstream or guideline) therapies. Children whose parents have a lower educational level are more likely to have used conventional medication. Whereas, children with more sensory issues (e.g. sensitivity to sound, smell or movement) were more likely to have used unconventional medication. This study found that other autism-related characteristics such as the number of autism symptoms, social skills and repetitive and restrictive behaviours were not related to the interventions used. More treatments focussed on multiple problems should be available for children with autism who have additional difficulties.
      Citation: Autism
      PubDate: 2022-06-13T09:39:44Z
      DOI: 10.1177/13623613221102748
       
  • Considerations of the built environment for autistic individuals: A review
           of the literature

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      Authors: Melissa Heather Black, Sarah McGarry, Lynn Churchill, Emily D’Arcy, Julia Dalgleish, Isabelle Nash, Alisala Jones, Tin Yan Tse, Jane Gibson, Sven Bölte, Sonya Girdler
      Abstract: Autism, Ahead of Print.
      Until recently, built environments have been designed exclusively to meet the needs of neurotypical populations; however, there is increasing recognition of the need to make built environments more accommodating for neurodiverse populations, including autistic individuals. This scoping review aims to comprehensively explore and synthesise this literature on the internal built environment for autistic individuals providing recommendations for designers, policymakers and clinicians. Five electronic databases were searched, resulting in a total of 28 studies being reviewed. Recommendations are provided for design and construction, lighting, sound, aesthetics, temperature and air quality. While in its early stages, evidence demonstrating the impact that particular qualities of light, colour, sound and spatial planning have on the human sensorium is emerging. In turn, this new knowledge is informing design decisions that are progressing interior environments towards inclusivity. Understanding the positive and negative impacts of decisions made in the design of the built environment has the potential to facilitate the participation and inclusion of autistic individuals.Lay abstractFactors related to the interiors of buildings, including the layout of rooms, colours, smells, noises, temperature, ventilation, colour and clutter, among other things, can change the way we interact with our environment and the people around us. Autistic individuals can have differences in processing sensory information and may find aspects of the built environment (BE) over-whelming and difficult to navigate. We reviewed the existing literature exploring the BE and autism. This study found that it is possible to make changes to the BE to create more inclusive and friendly environments for everyone, including autistic individuals. Findings from this study provide clear recommendations that can be used by interior designers, architects, builders, and clinical practitioners to make a positive difference. Key recommendations include using simple spatial layouts, compartmentalising and zoning spaces into specific activity sections and providing retreat spaces. The thoughtful placement of windows and blinds and the installation of dimmable lights, for example, will allow users to manage or reduce sensory over-stimulation caused by lights. Similarly, we recommend creating soundproofing and sound absorbent materials to reduce background noise and sound levels. We also recommend using neutral or simple colour palettes and restrained use of patterns. Finally, and most importantly, the BE needs to be flexible and adaptable to meet the unique needs of each person. This study provides a starting point for design guidelines and recommendations towards making a difference to the everyday experiences of the interiors of buildings.
      Citation: Autism
      PubDate: 2022-06-13T01:34:15Z
      DOI: 10.1177/13623613221102753
       
  • One size does not fit all for parent-mediated autism interventions: A
           randomized clinical trial

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      Authors: Megan Y Roberts, Bailey J Sone, Maranda Jones, Jeffrey Grauzer, Laura Sudec, Yael S Stern, Elaine Kwok, Molly Losh, Aaron Kaat
      Abstract: Autism, Ahead of Print.
      Coaching parents to use language facilitation strategies improves long-term language outcomes for autistic children. To optimize parent-mediated interventions, more studies need to explore factors that influence parents’ learning. This study involved 119 autistic children (18–48 months) and their biological mothers enrolled in a single-site, factorial randomized clinical trial. Mothers were taught to use one of two types of language facilitation strategies (responsive or directive) during eight weekly, hour-long instructional sessions. We explored the impact of (a) type of language facilitation strategy, (b) maternal Broad Autism Phenotype (subclinical traits of autism spectrum disorder), and (c) preintervention strategy use on mothers’ outcomes measured immediately and 3 months after intervention sessions. At postintervention, mothers who learned responsive strategies demonstrated significantly greater use of taught strategies than mothers who learned directive strategies (d = 0.90, 95% CI =[0.47, 1.32]). Mothers’ use of taught strategies did not differ by Broad Autism Phenotype status. However, a significant two-way interaction was found between preintervention strategy use and Broad Autism Phenotype status on taught strategy use (F(1, 107) = 6.04, p = 0.016, ΔR2 = 0.053). Findings suggest that strategy type, maternal Broad Autism Phenotype status, and preintervention strategy use may be important factors to be considered to individualize parent-mediated interventions.Lay AbstractParent-mediated interventions support parents’ use of language facilitation strategies to improve their autistic child’s communication and language development. To improve the effectiveness of parent-mediated interventions, it is important to individualize interventions. This article evaluates how different components of parent-mediated interventions and mothers’ learning styles influence the effectiveness of the intervention. In a randomized clinical trial, mothers were taught to use one of two types of language facilitation strategies: responsive and directive. Mothers’ learning styles were characterized by the Broad Autism Phenotype (BAP) and their natural tendency to use language facilitation strategies before intervention. Findings suggest that it was easier for all mothers (irrespective of learning style) to use responsive strategies compared to directive strategies. In addition, mothers with learning styles that were not consistent with the BAP were more likely to benefit from the intervention if they did not naturally use strategies before the intervention. In contrast, mothers with learning styles that were consistent with the BAP were more likely to benefit from the intervention if they did naturally use strategies before the intervention. Teaching mothers to use responsive strategies results in greater strategy use. Consideration of BAP and mothers’ natural use of language facilitation strategies may inform intervention individualization.
      Citation: Autism
      PubDate: 2022-06-13T01:31:09Z
      DOI: 10.1177/13623613221102736
       
  • Consensus statements on optimal adult post-autism diagnosis support and
           services: Delphi process following a UK survey of autistic adults,
           relatives and clinicians

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      Authors: Sarah Wigham, Barry Ingham, Ann Le Couteur, Colin Wilson, Ian Ensum, Jeremy R Parr
      Abstract: Autism, Ahead of Print.
      Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally.Lay AbstractResearch has identified types of support helpful to autistic people, for example, physical and mental health interventions, psycho-education, peer support, developing positive identities and affiliation with social groups. However, accessing suitable post-autism diagnosis support and services is extremely difficult. We asked autistic adults, relatives and clinicians about their experiences of receiving and delivering post-autism diagnosis support/services. In Stage 1, 343 autistic adults and 45 relatives completed a survey. They answered questions about their experiences of UK autism post-diagnosis support/services for adults within 12 months after receiving a diagnosis. Thirty-five clinicians completed a similar survey. Just over half of adults and relatives said there was a follow-up appointment or discussion about support after diagnosis. Fewer than 40% received any support/services in 12 months after diagnosis. We used information from the surveys to create 11 statements describing characteristics of appropriate adult post-autism diagnosis support/services. In Stage 2, we asked clinicians for their views on the statements – they agreed with all of them. For example, those adults are offered an additional follow-up meeting after diagnosis and have access to mental and physical health services. We shared results with autistic adults, relatives and clinicians at two events. Some autistic adults, relatives and clinicians were positive about post-autism diagnosis support/services. However, they described many areas for improvement. The study findings can be used to define, develop and improve the types of adult post-diagnosis support services.
      Citation: Autism
      PubDate: 2022-06-07T07:22:20Z
      DOI: 10.1177/13623613221097502
       
  • A longitudinal study of the mental health of autistic children and
           adolescents and their parents during COVID-19: Part 2, qualitative
           findings

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      Authors: Kathryn Asbury, Umar Toseeb
      Abstract: Autism, Ahead of Print.
      In Part 1 of this UK-based study, across four timepoints between March and October 2020, autistic children and young people showed higher levels of parent-reported depression and anxiety symptoms than those with other special educational needs and disabilities. In this study, we draw on qualitative data from 478 parents/carers of autistic pupils and those with other special educational needs and disabilities to conduct a longitudinal qualitative content analysis examining stability and change in the mental health of these young people, and their parents/carers, during the first 6 months of the COVID-19 pandemic. Worry and psychological distress were dominant categories at all timepoints and we noted that, in line with quantitative findings, worry in autistic pupils stayed stable over time but decreased for those with other special educational needs and disabilities. The third dominant category was wellbeing and we saw evidence that removing demands, especially the demand to attend school, was a driver of wellbeing for a significant minority of pupils, particularly autistic pupils, and their parents/carers. Overall, we observed no differences in mental health experiences between the two groups of parents, also mirroring quantitative findings.Lay abstractWe know that autistic children and young people, and their caregivers, are at increased risk of mental ill health. We asked whether the first 6 months of COVID-19 exacerbated that risk, and whether the implications were different for autistic pupils and their caregivers, than for those with other special educational needs and difficulties. In a linked paper, we found that caregivers of autistic pupils reported higher levels of depression and anxiety symptoms in their children than parents of children with other special educational needs and difficulties (Toseeb & Asbury, 2022). For pupils with other special educational needs and difficulties, their parent-reported anxiety symptoms eased over time while remaining high throughout for autistic pupils. There were no differences in mental health and wellbeing between caregivers of autistic pupils and those with other special educational needs and difficulties. Here, we used parents’ written descriptions of their own and their child’s mental health during the first 6 months of COVID-19 to explore these linked findings in greater depth. We identified strong evidence of worry and distress for all, but most prominently autistic children and young people. Our finding that worry and distress declined over time for pupils with other special educational needs and difficulties, but not for autistic pupils, was supported and we observed a few differences between caregivers. We also found evidence of wellbeing throughout the sample, and examples of some (mainly autistic) pupils benefitting from a reduction in demands (e.g. going to school). This has implications for our understanding of the school experience for autistic pupils. Findings suggest that the mental health of autistic children and young people may have been disproportionately affected during the first 6 months of COVID-19 and that careful consideration of optimal support, from both health and education perspectives, is vital.
      Citation: Autism
      PubDate: 2022-06-07T06:11:14Z
      DOI: 10.1177/13623613221086997
       
  • A longitudinal study of the mental health of autistic children and
           adolescents and their parents during COVID-19: Part 1, quantitative
           findings

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      Authors: Umar Toseeb, Kathryn Asbury
      Abstract: Autism, Ahead of Print.
      Autistic children and adolescents and their parents are likely to have been disproportionally affected during the COVID-19 pandemic. There has been little focus on how the mental health of these vulnerable families developed during the pandemic and how it compared to those with other special educational needs and disabilities. Questionnaires were completed by a maximum of 527 parents/carers about their own and their child’s mental health at one or more time points between 23 March 2020 (at the onset of the first lockdown) and 10 October 2020 (when schools fully reopened for face-to-face teaching). Multi-level regression models were fitted to the data. Autistic young people had more depression and anxiety symptoms compared to young people with other special educational needs and disabilities throughout the study period. As lockdown progressed and schools subsequently reopened for face-to-face teaching, anxiety levels decreased for young people with special educational needs and disabilities but not for autistic young people, whose anxiety levels remained stable throughout. Depression symptoms, however, remained stable for both groups during this period as did parents’/carers’ psychological distress and well-being. These findings shed new light on the likely disproportionate effect of the COVID-19 pandemic on anxiety levels in autistic young people.Lay abstractAutistic children and adolescents, and their parents/carers, tend to experience more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. The rapid change in society as a result of the COVID-19 pandemic is likely to have disproportionately affected autistic young people and their parents/carers. We investigated how the mental health of autistic young people, and their parents/carers, developed during the first lockdown in the United Kingdom and how it changed once schools fully reopened for face-to-face teaching approximately 6 months later. Parents/carers completed online standardised questionnaires about their own and their child’s mental health at four time points between March 2020 and October 2020. We found that, throughout this period, autistic young people experienced more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. Anxiety levels decreased as lockdown progressed and schools reopened for face-to-face teaching but only for those with other special educational needs and disabilities. For autistic young people, both anxiety and depression symptoms remained high throughout. There were no differences in the mental health of parents/carers of autistic children compared to those with other special educational needs and disabilities. These findings suggest that the mental health of autistic children and adolescents is likely to have been disproportionately affected during and after the first lockdown in the United Kingdom. In the second part of this article (Asbury & Toseeb, 2022), we attempt to explain these trends using qualitative data provided by parents during the same period.
      Citation: Autism
      PubDate: 2022-06-07T06:11:13Z
      DOI: 10.1177/13623613221082715
       
  • Autism as a difference or a disorder' Exploring the views of
           individuals who use peer-led online support groups for autistic partners

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      Authors: Laura Foran Lewis
      Abstract: Autism, Ahead of Print.
      Approximately one-third of autistics report intimate relationship experience, but few studies have explored neuromixed relationships from the perspectives of non-autistic partners. Non-autistic partners increasingly use peer-led online groups to seek support. The purpose of this study was to capture a theory that reflects the basic social experience of individuals who use these support groups using classic Glaserian grounded theory methodology. Online interviews were conducted with 162 non-autistics who believed that they were in neuromixed relationships. Data were concurrently collected and analyzed using constant comparative analysis. Participants described varying views of autism, from a difference to a disorder, which defined the context of their relationships. Five relationship profiles emerged—mutual partnership: viewed partners as = companionship: viewed partners as friends but lacked a deeper connection; caregiving: viewed partners as dependents and compared relationships to parent–child dyads; detachment: viewed relationships as broken beyond repair and isolated selves from partners; and discriminatory: believed and circulated negative generalizations about autism. Many participants who were dissatisfied in their relationships shared that their partners were not formally evaluated and did not self-identify as autistic. Future research should explore ways that autism labels are (mis)applied by the general public based on negative stereotypes about autism.Lay abstractIndividuals who use peer-led online support groups for partners of autistics describe diverse views of autism, with some describing autism as a difference and others describing it as a disorder. I conducted online interviews with 162 non-autistics who believed they were in relationships with autistics and who participated in online support groups on social media. I analyzed their responses by constantly comparing each interview to previous interviews to develop a theory about their social experiences. As many as one-third of autistics participate in romantic relationships, and many of their partners seek support through groups on social media. Few studies explore what it is like to be a non-autistic person who is in a relationship with an autistic person. The way that participants viewed autism influenced the way that they viewed themselves, their partners, and their relationships. Many participants who were dissatisfied in their relationships shared that they believed their partners were autistic, but their partners had never been formally evaluated and did not self-identify as autistic. Future research should explore ways that autism labels are (mis)applied by the general public based on negative stereotypes about autism.
      Citation: Autism
      PubDate: 2022-06-02T09:36:41Z
      DOI: 10.1177/13623613221097850
       
  • Sex differences in predictors and outcomes of camouflaging: Comparing
           diagnosed autistic, high autistic trait and low autistic trait young
           adults

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      Authors: Victoria Milner, Will Mandy, Francesca Happé, Emma Colvert
      Abstract: Autism, Ahead of Print.
      Many autistic individuals camouflage socially atypical behaviours. Evidence suggests autistic females camouflage more than autistic males. Although camouflaging may confer some benefits, it is also associated with negative outcomes including poorer mental health and well-being. Those with high autistic traits but no clinical diagnosis are not seldom included in camouflaging research, therefore we cannot ascertain whether camouflaging plays a role in the underdiagnosis of autistic females. Data from young adults with a diagnosis of autism (n = 78), high autistic traits but no diagnosis (n = 177) or low autistic traits (n = 180) revealed autistic females reported camouflaging significantly more than other groups. Males and females with low autistic traits reported significantly lower camouflaging than high trait and diagnosed groups. Loneliness was a key predictor of camouflaging for the diagnosed group only. Camouflaging was found to predict lower psychological quality of life for the diagnosed group, and lower social quality of life for the high trait and low trait groups. Overall, findings indicated that, although all groups reported camouflaging, the motivations for doing so may be different for diagnosed autistic individuals. It is important for stakeholders and society to improve understanding of autism and acceptance of atypical behaviour to alleviate possible negative outcomes associated with camouflaging.Lay AbstractMany autistic people use strategies that help them adapt in social situations and hide behaviours that may seem different to non-autistic individuals – this is called camouflaging. Camouflaging may help autistic people fit in socially; however, it might also lead to poorer well-being. It has been suggested that autistic females camouflage more than autistic males. This article explored differences between males and females who have an autism diagnosis, have characteristics of autism but no diagnosis and those with few autistic characteristics. It is important to include these groups as camouflaging may make it more difficult to get an autism diagnosis and therefore make it less likely a person will receive support. We found that autistic women camouflaged more than all other groups. The group with few autistic characteristics (males and females) camouflaged the least. Loneliness was found to be a possible reason for camouflaging for the diagnosed autistic group only. In terms of outcomes related to camouflaging, it was found that those who camouflaged most had a lower quality of life; this was true of all groups. This tells us that there may be different reasons to camouflage, and different outcomes related to camouflaging for those with many characteristics of autism (including those with a diagnosis), and those with few. It is important that clinicians, teachers, parents and other stakeholders are aware of the negative outcomes associated with camouflaging so that more support can be provided for those who need it.
      Citation: Autism
      PubDate: 2022-06-02T08:41:48Z
      DOI: 10.1177/13623613221098240
       
  • Prospective relationship between autistic traits and nutrient intakes
           among Japanese children: Results of the Shika study

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      Authors: Hiromasa Tsujiguchi, Akinori Hara, Sakae Miyagi, Kim Oanh Pham, Keita Suzuki, Thao Thi Thu Nguyen, Yasuki Ono, Yasuhiro Kambayashi, Yukari Shimizu, Haruki Nakamura, Fumihiko Suzuki, Aki Shibata, Koichi Hayashi, Hirohito Tsuboi, Hiroyuki Nakamura
      Abstract: Autism, Ahead of Print.
      Increased food selectivity among children with autism spectrum disorder may lead to nutritional inadequacy. We designed this study to examine the prospective relationship between autistic traits in children and subsequent nutrient intake in later childhood and whether this relationship changes over time. We utilized longitudinal data obtained at two time points from the Shika study, an ongoing population-based study conducted in a rural area of Japan. Participants were 759 Japanese children aged between 7 and 12 years at baseline and between 10 and 15 years in the follow-up. The results obtained showed relatively lower intakes of sodium, calcium, magnesium, iron, vitamin D, vitamin B2, and vitamin B12 among children with than without autistic traits. Interactions were observed among autistic traits and time points for iron, vitamin B2, folic acid, and pantothenic acid. The results of this study suggest the importance of screening the nutrient intake of children with autistic traits across childhood in order to reduce the risk of restricted intake.Lay AbstractIt is known about food selectivity among children with autism spectrum disorder. However, the nutritional inadequacy among children with ASD is not clear. Especially, long-term evaluation has not been studied. We examined the prospective relationship between autistic traits in children and subsequent nutrient intake in later childhood. We utilized data obtained at two time points from a study conducted in Japan. Participants were 759 Japanese children aged between 7 and 12 years at baseline and between 10 and 15 years in the follow-up. The results showed relatively lower intakes of sodium, calcium, magnesium, iron, vitamin D, vitamin B2, and vitamin B12 among children with than without autistic traits. Relatively lower intake of minerals and vitamins in children with autistic traits is more evident in later childhood. The results suggest the importance of screening the nutrient intake of children with autistic traits across childhood.
      Citation: Autism
      PubDate: 2022-06-02T08:37:45Z
      DOI: 10.1177/13623613221097487
       
  • Learning from the experts: Evaluating a participatory autism and universal
           design training for university educators

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      Authors: TC Waisman, Zachary J Williams, Eilidh Cage, Siva Priya Santhanam, Iliana Magiati, Patrick Dwyer, Kayden M Stockwell, Bella Kofner, Heather Brown, Denise Davidson, Jessye Herrell, Stephen M Shore, Dave Caudel, Emine Gurbuz, Kristen Gillespie-Lynch
      Abstract: Autism, Ahead of Print.
      Autistic students experience strengths and challenges that can impact their full inclusion in higher education, including stigma. A participatory team of autistic and non-autistic scholars developed an autism and universal design (UD) training. This participatory approach centered the voices of autistic collaborators in training design and evaluation. Ninety-eight educators from 53 institutions across five countries completed assessments before training (pre-tests), 89 completed post-tests (after training), and 82 completed maintenance assessments (a month after post-test). Pre-test autism stigma was heightened among males, educators with less autism knowledge, and those who reported heightened social dominance orientation. Autism knowledge, autism stigma, and attitudes toward UD improved with training. Improvements remained apparent a month after post-test but were somewhat attenuated for knowledge and stigma. To the best of our knowledge, this is the first evidence of maintenance of benefits of an autism training over time. Participants’ main reason for enrolling in the study was to gain a better understanding about neurodiversity. Feedback indicates that this goal was reached by most with the added benefit of gaining understanding about UD. Results suggest that interest in one type of diversity (e.g. autism) can motivate faculty to learn UD-aligned teaching strategies that benefit diverse students more generally.Lay abstractAutistic university students have many strengths. They also go through difficulties that professors may not understand. Professors may not understand what college life is like for autistic students. They might judge autistic students. A team of autistic and non-autistic researchers made a training to help professors understand autistic students better. This training also gave professors ideas to help them teach all of their students. Ninety-eight professors did an online survey before the autism training. They shared how they felt about autism and teaching. Before our training, professors who knew more about autism appreciated autism more. Professors who thought people should be equal and women also appreciated autism more. Then, 89 of the professors did our training and another survey after the training. This helped us see what they learned from the training. They did one more survey a month later. This helped us see what they remembered. Our training helped professors understand and value autism. It also helped them understand how they can teach all students better. The professors remembered a lot of what we taught them. This study shows that a training that autistic people helped make can help professors understand their autistic students better.
      Citation: Autism
      PubDate: 2022-06-02T08:34:38Z
      DOI: 10.1177/13623613221097207
       
  • Stakeholder experiences, attitudes and perspectives on inclusive education
           for children with developmental disabilities in sub-Saharan Africa: A
           systematic review of qualitative studies

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      Authors: Elisa Genovesi, Cecilia Jakobsson, Lena Nugent, Charlotte Hanlon, Rosa A Hoekstra
      Abstract: Autism, Ahead of Print.
      Inclusive education is a key strategy in addressing the needs of children with autism and other developmental disabilities in sub-Saharan Africa, who rarely access specialist care or quality education. We aimed to systematically review qualitative research on stakeholder experiences, attitudes and perspectives on inclusive education for pupils with developmental disabilities in mainstream schools in sub-Saharan Africa. We searched five databases and selected relevant studies through a two-stage screening process. We synthesised the papers identified through template analysis of the Results and Discussion sections, guided by the Consolidated Framework for Implementation Research. Thirty-two publications met the inclusion criteria. The studies were conducted in seven countries and explored the experiences of pupils with developmental disabilities, parents, peers without developmental disabilities and teachers. Multiple barriers (e.g. unclear policies, insufficient training and support for teachers) and opportunities (e.g. teachers’ commitment to inclusion, collaboration between teachers, the work of non-governmental organisations (NGOs)) for implementing inclusive education for pupils with developmental disabilities in sub-Saharan Africa were identified, occurring across national and community contexts and school, classroom and individual teacher levels. To effectively implement inclusive education for pupils with developmental disabilities, teachers need access to appropriate training, resources and support. Governments can capitalise on motivated teachers and the relevant work of NGOs.Lay abstractIn sub-Saharan Africa, there are few services for children with developmental disabilities such as autism and intellectual disability. One way to support these children is to include them in mainstream schools. However, currently, African children with developmental disabilities are often excluded from mainstream education opportunities. People involved (e.g. teachers, families and children) can offer information on factors that could ease or interfere with inclusion. This article discusses the findings of published studies that explored the views of relevant groups on including children with developmental disabilities in mainstream schools in sub-Saharan Africa. We systematically searched the literature and identified 32 relevant articles from seven countries in sub-Saharan Africa. We found that unclear policies and insufficient training, resources and support for teachers often blocked the implementation of inclusive education. Factors in favour of inclusive education were the commitment of many teachers to include pupils with developmental disabilities and the work of non-governmental organisations (NGOs), which provided resources and training. This review suggests that motivated teachers should be provided with appropriate training, resources and support for inclusive education, directly and by promoting the work of NGOs.
      Citation: Autism
      PubDate: 2022-05-30T11:23:48Z
      DOI: 10.1177/13623613221096208
       
  • Suicidal ideation and intentional self-inflicted injury in autism spectrum
           disorder and intellectual disability: An examination of trends in youth
           emergency department visits in the United States from 2006 to 2014

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      Authors: Paige E Cervantes, Derek S Brown, Sarah M Horwitz
      Abstract: Autism, Ahead of Print.
      Substantial efforts have been dedicated to understanding, assessing, and managing suicide risk in youth broadly. However, little attention has been focused specifically on autistic youth and youth with intellectual disability. Because emergency departments are an essential point of suicide-related care, we used the National Emergency Department Sample databases to explore differences in prevalence of U.S. emergency department visits with a suicidal ideation or intentional self-inflicted injury ICD-9 diagnostic code by autistic youth, youth with intellectual disability, and youth without these diagnoses (i.e. the comparison group). Emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis were more prevalent in autistic youth (5.1%) and youth with intellectual disability (6.6%) than in the comparison group (1.2%). Similar results were found when examining visits with a suicidal ideation diagnosis and with an intentional self-inflicted injury diagnosis separately. Prevalence of these emergency department visits increased more from 2006 to 2014 in autistic youth and in youth with intellectual disability than in the comparison group and were correlated with common and distinct sociodemographic and clinical factors across groups. Results suggest autistic youth and youth with intellectual disability may be uniquely vulnerable to suicide risk, highlighting the urgency of addressing suicidality and self-harm in these groups, particularly within emergency department settings.Lay abstractYouth suicide is a major problem in the United States and globally, but little is known about suicide risk in autistic youth and youth with intellectual disability specifically. Using data from the National Emergency Department Sample, which is the largest database of emergency department visits in the United States, we found that emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis were more common in autistic youth and youth with intellectual disability than in youth without these diagnoses (i.e. the comparison group). This was true when examining both suicidal ideation diagnoses and intentional self-inflicted injury diagnoses at emergency department visits. In addition, the number of emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis increased more from 2006 to 2014 in autistic youth and youth with intellectual disability compared with the comparison group. We also found both similarities and differences when examining factors, such as age, sex, and co-occurring mental health conditions, related to emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis across groups that may be helpful for understanding suicide risk. It is urgent that we improve our understanding, assessment, and treatment of suicidality and self-harm in these groups through more research and clinical efforts.
      Citation: Autism
      PubDate: 2022-05-24T10:23:33Z
      DOI: 10.1177/13623613221091316
       
  • Longitudinal impact of parents’ discrimination experiences on
           children’s internalizing and externalizing symptoms: A 2-year study of
           families of autistic children

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      Authors: Kevin Ka Shing Chan, Donald Chi Kin Leung, Winnie Tsz Wa Fung
      Abstract: Autism, Ahead of Print.
      The present study examined the longitudinal associations of parents’ discrimination experiences with children’s internalizing and externalizing symptoms among families of autistic children and tested whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents’ discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children’s internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents’ discrimination experiences at T1 had significant indirect effects on children’s internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Theoretically, our findings elucidate how parents’ discrimination experiences may longitudinally heighten children’s internalizing and externalizing symptoms by adversely affecting parental well-being and parent–child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents’ discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development.Lay abstractAlthough many parents of autistic children are routinely discriminated against, the potential impact of this discrimination on their parenting processes and child-rearing outcomes has seldom been investigated. The present study addressed this gap in the literature by examining the longitudinal associations of parents’ discrimination experiences with children’s internalizing and externalizing symptoms among families of autistic children and testing whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents’ discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children’s internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents’ discrimination experiences at T1 had significant indirect effects on children’s internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Our findings have important theoretical contributions and significant practical implications. Theoretically, our findings elucidate how parents’ discrimination experiences may longitudinally heighten children’s internalizing and externalizing symptoms by adversely affecting parental well-being and parent–child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents’ discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development.
      Citation: Autism
      PubDate: 2022-05-19T04:37:19Z
      DOI: 10.1177/13623613221093110
       
  • Examining clinical characteristics of autism and links with parent
           perceptions of sibling relationship quality

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      Authors: Alana J McVey, Quinn Liu, Saashi A Bedford, Anat Zaidman-Zait, Peter Szatmari, Isabel M Smith, Tracy Vaillancourt, Lonnie Zwaigenbaum, Teresa Bennett, Eric Duku, Mayada Elsabbagh, Stelios Georgiades, Connor M Kerns
      Abstract: Autism, Ahead of Print.
      Research regarding autistic children’s sibling relationship quality is mixed, although some literature suggests poorer quality compared to children with other disabilities or who are neurotypical. Little is known about how the clinical characteristics of autistic children relate to parent perceptions of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum, ages 10–11 years, from an ongoing longitudinal study. Hierarchical multiple regressions tested the extent to which children’s autism symptoms, behavioral difficulties, and communication abilities related to four domains of parent-rated sibling relationship quality. We also examined communication ability as a moderator of the effect of behavioral difficulties on parent-rated sibling relationship quality. More severe autism symptoms were associated with lower levels of conflict and rivalry, whereas higher communication ability was related to more relative status/power, but also conflict. Communication ability moderated the effect of behavioral difficulties such that behavioral difficulties were more closely associated with less warmth/closeness when children had weaker communication skills; behavioral difficulties were not significantly associated with other domains of sibling relationship quality. Findings underscore the importance of considering clinical characteristics and multiple domains of relationship quality to better understand how parents view the relationships between autistic children and their siblings.Lay abstractSibling relationship quality is important for the well-being of children on the autism spectrum and their siblings. Little is known, however, about how varied behavior and abilities of children on the autism spectrum may be associated with parent perceptions of domains of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum (ages 10–11 years), participating in an ongoing longitudinal study. We looked at how three clinical characteristics (autism symptoms, behavioral difficulties, and communication ability) related to four areas of parent-reported sibling relationship quality (warmth/closeness, conflict, relative status/power, and rivalry). We also examined whether the strength of the association between behavioral difficulties and parent-reported sibling relationship quality was influenced by communication ability. We found that more severe autism symptoms were associated with less conflict and rivalry, and higher communication ability was associated with more relative status/power. We also found that children on the autism spectrum with more behavioral difficulties and weaker communication ability had less warmth/closeness in their sibling relationships. Our findings highlight that it is important to consider autism symptoms, behavioral difficulties, and communication ability, as well as multiple domains of relationship quality, to better understand how parents view the relationships between autistic children and their siblings. Clinically, methods for improving sibling relationships may include teaching conflict resolution strategies to children on the autism spectrum with stronger communication abilities and their siblings, and fostering sibling connection for those with lower communication abilities.
      Citation: Autism
      PubDate: 2022-05-05T06:53:30Z
      DOI: 10.1177/13623613221094672
       
  • Autistic children who create imaginary companions: Evidence of social
           benefits

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      Authors: Paige E Davis, Jessica Slater, David Marshall, Diana L Robins
      Abstract: Autism, Ahead of Print.
      Past research shows that autistic children can and do create imaginary companions (ICs), and that these ICs resemble those that neurotypical children create. Neurotypical children creating ICs have been found to have significantly more developed theory of mind (ToM) and social understanding among other enhanced social cognitive skills. The study set out to determine if this finding applies to autistic children. Parents of 124 (38 female) autistic children, ages from 5 to –12 years old, completed questionnaires evaluating communication, social understanding, and social skills. Children with ICs had significantly higher ToM and social skills scores regardless of their communication abilities. Findings suggest that there is a variability in ToM and social skills in autistic children in reference to an IC play profile. Results are discussed in terms of direction of causality and lab-based investigations.Lay abstractResearch on neurotypical children with imaginary friends has found that those with imaginary friends have better social skills and are more able to think about how other people’s minds work compared to children without imaginary friends. Research shows that some autistic children also create imaginary friends. This article is the first to look at whether or not autistic children with imaginary friends have stronger social skills and an improved ability to think about others’ minds than those without imaginary friends. We asked parents to report about their children aged 5 to 12. Finding almost half reported their child had an imaginary friend, a much larger number than previous research with younger children. Our findings also suggested that autistic children with imaginary friends were better able to understand others’ minds and had stronger social skills than their peers without imaginary friends. The children’s language ability did not influence this. The findings of this study add to the evidence that with respect to the creation imaginary friends and their potential benefits, the play profiles of autistic children are similar to the general population. It also provides more evidence that the understanding of others’ minds is not all or nothing in autism and gives reason for researchers to investigate whether the causes of these differences are the same or different for autistic children.
      Citation: Autism
      PubDate: 2022-05-03T06:36:09Z
      DOI: 10.1177/13623613221092195
       
  • Reasons for alcohol use and non-use by underage U.S. autistic youth: A
           qualitative study

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      Authors: Emily F Rothman, Laura Graham Holmes, Dani Brooks, Shari Krauss, Reid Caplan
      Abstract: Autism, Ahead of Print.
      This study describes the views and experiences of autistic youth about alcohol, including reasons for use and nonuse. We conducted 40 semi-structured interviews with autistic youth aged 16–20 years old. Of these, 20 had consumed alcohol in the past year. We used an inductive content-based analysis approach. Youth were deliberate about their choices to use, or abstain from, alcohol. Some conducted their own background research on the effects of alcohol, while others took a very measured approach to drinking and paced their alcohol consumption during drinking episodes with care. Reasons not to drink included fear of developing alcohol addiction, not liking the taste of alcohol, concern about alcohol interacting with prescribed medications, as well as the desire to avoid hangover, disinhibition, or other negative effects. On the contrary, youth had some positive alcohol expectancies: non-autistic people are more accepting when drinking, alcohol helps autistic people cope with problems, irritability, boredom, and sensory processing challenges, and helps them fit in. Results reveal that alcohol use disorder in autistic adults could have its roots in underage experiences that provide temporary relief from social anxiety, feeling socially isolated, and challenges with sensory processing. The development of evidence-based youth alcohol prevention strategies for autistic youth may be an important next step.Lay abstractWhat is already known about the topic' Hazardous alcohol use is when a person’s drinking puts them at increased risk for negative events (e.g. health problems or car crashes). Some studies show that autistic people may be at greater risk for hazardous alcohol use than non-autistic people, while other studies have found that hazardous alcohol use is less common among autistic people than non-autistic people. We need to learn why autistic underage youth choose to drink alcohol or not. The goal of this study was to learn from US autistic youth about their attitudes and behavior related to alcohol. Forty autistic youth aged 16–20 years old were interviewed.What this article adds' Youth described several reasons why they choose to drink alcohol, including feeling like non-autistic people are more accepting when drinking, that it puts them in a less irritable or bored mood, helps them cope with problems, and helps them fit in. Reasons for not drinking alcohol include worries about becoming addicted, medication interactions, not liking the taste, fear of experiencing hangover and other health problems, and concern about acting foolish when drunk.Implications for practice, research, or policy Results reveal that hazardous alcohol use in autistic adults could have its roots in underage experiences that give autistic youth temporary relief from social anxiety, feeling lonely, and challenges with sensory processing. Right now, there are no evidence-based alcohol prevention programs in the United States for autistic people. One or more such programs may be needed. The results from this study could be used to adapt existing programs for non-autistic youth to the unique needs and risk factors of autistic youth.
      Citation: Autism
      PubDate: 2022-05-02T02:16:25Z
      DOI: 10.1177/13623613221091319
       
  • Longitudinal development of language and fine motor skills is correlated,
           but not coupled, in a childhood atypical cohort

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      Authors: Marie K Deserno, Delia Fuhrmann, Sander Begeer, Denny Borsboom, Hilde M Geurts, Rogier A Kievit
      Abstract: Autism, Ahead of Print.
      Autism is often associated with early developmental delays in language and motor skills. However, little is known about the complex dynamic processes that drive the co-development of such early difficulties. The aim of the present study was to model the parallel growth of language and motor skills in a cohort of infants and to explore differences between infants with typical development and those with atypical development. Receptive and expressive language and fine motor skills were repeatedly assessed in a group of 239 infants (7 months at t1 and 36 months at t4) from the British Autism Study of Infant Siblings sample. Latent Growth Curve Analysis was applied to investigate the mutualistic coupling of longitudinal changes in these domains. Our results showed highly correlated slopes but we did not find an association between baseline scores in one domain and rates of change in the other (i.e. coupling). In the later diagnosed group, we found that scores at baseline and rates of change were more variable.Lay abstractMore and more members of the autistic community and the research field are moving away from the idea that there will be a single biological or cognitive explanation for autistic characteristics. However, little is known about the complex dynamic processes that could explain why early difficulties in the language and motor domain often go hand-in-hand. We here study how language and motor skills develop simultaneously in the British Autism Study of Infant Siblings cohort of infants, and compare the way they are linked between children with and without developmental delays. Our results suggest that improvements in one domain go hand-in-hand with improvements in the other in both groups and show no compelling evidence for group differences in how motor skills relate to language and vice versa. We did observe a larger diversity in motor and language skills at 6 months, and because we found the motor and language development to be tightly linked, this suggests that even very small early impairments can result in larger developmental delays in later childhood. Greater variability at baseline, combined with very strong correlations between the slopes, suggests that dynamic processes may amplify small differences between individuals at 6months to result into large individual differences in autism symptomatology at 36 months.
      Citation: Autism
      PubDate: 2022-04-26T12:01:48Z
      DOI: 10.1177/13623613221086448
       
  • Supporting peer engagement for low-income preschool students with autism
           spectrum disorder during academic instruction: A pilot randomized trial

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      Authors: Jonathan L Panganiban, Stephanie Y Shire, Justin Williams, Connie Kasari
      Abstract: Autism, Ahead of Print.
      Schools are the portal through which many children with autism spectrum disorder access early intervention. Collaborating with teachers can be an effective way to implement evidence-based practices. In this study, teachers learned to embed strategies from the Joint Attention, Symbolic Play, Engagement, and Regulation intervention into the standard preschool curriculum. Twelve schools with special education preschool classrooms for students with moderate to severe disabilities from under-resourced neighborhoods were randomized to augment their curriculum with Joint Attention, Symbolic Play, Engagement, and Regulation strategies or continue the standard curriculum. Teachers’ strategy implementation, children’s time on task, and social communication were examined before and after completing the intervention phase. Teachers in the Joint Attention, Symbolic Play, Engagement, and Regulation group implemented more Joint Attention, Symbolic Play, Engagement, and Regulation strategies than the control group after the intervention phase. Children in both groups increased time on task during teacher-led small group instruction. Children in the Joint Attention, Symbolic Play, Engagement, and Regulation group were more likely to be engaged with peers during small group instruction at the end of the intervention phase. Children from both groups improved in standardized measures of joint attention, requesting, expressive language, and receptive language. Training teachers to embed Joint Attention, Symbolic Play, Engagement, and Regulation strategies into small group instruction can help facilitate peer engagement, providing children more opportunities for peer socialization.Lay abstractChildren with autism spectrum disorder attending special education preschool classrooms may not receive support that addresses their core challenges, such as engagement and social communication. There are interventions designed to target these core challenges, like the play-based intervention known as Joint Attention, Symbolic Play, Engagement, and Regulation. Embedding strategies from an intervention like Joint Attention, Symbolic Play, Engagement, and Regulation into more traditional academic activities can help teachers target engagement and social communication throughout the school day. In the current study, we collaborated with special education preschool teachers to embed Joint Attention, Symbolic Play, Engagement, and Regulation strategies during small group time for moderate to severe disability students with autism spectrum disorder, 3–5 years of age. Compared to teachers implementing the standard preschool curriculum, teachers trained in Joint Attention, Symbolic Play, Engagement, and Regulation strategies effectively embedded these strategies in their small group activities, and their students were more likely to engage with peers during these activities. Supporting teachers to embed targeted strategies in academic activities can help them provide students more opportunities to engage with peers during the school day. Teachers can support their autistic students to interact appropriately with their peers. Unlike interventions that train peers to act as a teacher, embedding Joint Attention, Symbolic Play, Engagement, and Regulation strategies during small group academic activities facilitates naturalistic social interactions for autistic students.
      Citation: Autism
      PubDate: 2022-04-14T09:03:28Z
      DOI: 10.1177/13623613221085339
       
  • Autistic women’s views and experiences of infant feeding: A systematic
           review of qualitative evidence

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      Authors: Aimee Grant, Sara Jones, Kathryn Williams, Jennifer Leigh, Amy Brown
      Abstract: Autism, Ahead of Print.
      Low breastfeeding rates are driven by multiple bio-psycho-social factors. Experience of breastfeeding is known to differ by maternal demographic factors (age, education and ethnicity) but there is less recognition of factors such as neurodivergence. This review, prospectively registered with PROSPERO (registration number: CRD42021271465), systematically identified qualitative research, commentaries and personal accounts related to Autistic mothers and infant feeding. Database searching identified 1225 records, with thematic synthesis undertaken on 22 (eight peer-reviewed studies and 14 grey literature) pieces. Our analysis identified that maternity and infant feeding services were built on a lack of understanding of Autistic needs, and were often inaccessible at a time when Autistic mothers already felt a loss of control and lack of social support. Specifically relating to breastfeeding, knowledge and determination were often high, and a minority of mothers reported positive breastfeeding experiences. However, sensory challenges, pain and interoceptive differences (exacerbated by a lack of support) made breastfeeding impossible for some. Infant formula was viewed as second-best to breastmilk, but a minority of mothers found the ritual of preparing bottles of formula positive. There is an urgent need for maternity and infant feeding services to accommodate the needs of Autistic mothers, including service design and staff training.Lay abstractWhat is already known about the topic'Mothers are encouraged to breastfeed their babies due to known health benefits for both babies and mothers. However, although breastfeeding is ‘natural’, that does not make it easy and many women experience challenges. Autistic women may face additional barriers to breastfeeding when compared to neurotypical women.What this paper adds'We reviewed all existing evidence on Autistic mothers’ infant feeding experiences (22 pieces) and found that although many Autistic women wanted to breastfeed, breastfeeding was difficult for Autistic mothers for three key reasons. First, maternity and infant feeding services were inaccessible and unsupportive to Autistic mothers, meaning they did not receive help when needed. Second, becoming a mother was challenging because of exhaustion, loss of control over routines and a lack of social support. Third, when breastfeeding Autistic mothers experienced sensory challenges, such as ‘being touched out’, and pain, which could feel unbearable. Despite these difficulties, many Autistic mothers had done a lot of reading about breastfeeding and were determined to breastfeed their babies; some mothers found breastfeeding positive. Infant formula was often viewed as second-best compared to breastmilk, but some mothers found the ritual of preparing bottles of formula to be calming.Implications for practice, research or policyThe findings of this work show that Autistic mothers urgently need better support from health professionals to help meet their breastfeeding goals, including how to remove or reduce the extra barriers being Autistic brings to breastfeeding.
      Citation: Autism
      PubDate: 2022-04-12T11:00:21Z
      DOI: 10.1177/13623613221089374
       
  • Does learning you are autistic at a younger age lead to better adult
           outcomes' A participatory exploration of the perspectives of autistic
           university students

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      Authors: Tomisin Oredipe, Bella Kofner, Ariana Riccio, Eilidh Cage, Jonathan Vincent, Steven K Kapp, Patrick Dwyer, Kristen Gillespie-Lynch
      Abstract: Autism, Ahead of Print.
      Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is “ready.” In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students (n = 78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted contextual factors to consider when telling a child about autism. Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive in adulthood.Lay abstractPeople learn they are autistic at different ages. We wanted to know if telling kids they are autistic earlier helps them feel better about their lives when they grow up. We are a team of autistic and non-autistic students and professors. Seventy-eight autistic university students did our online survey. They shared how they found out they were autistic and how they felt about being autistic. They also shared how they feel about their lives now. Around the same number of students learned they were autistic from doctors and parents. Students who learned they were autistic when they were younger felt happier about their lives than people who learned they were autistic when they were older. Students who learned they were autistic when they were older felt happier about being autistic when they first found out than people who did not have to wait as long. Our study shows that it is probably best to tell people they are autistic as soon as possible. The students who did our study did not think it was a good idea to wait until children are adults to tell them they are autistic. They said that parents should tell their children they are autistic in ways that help them understand and feel good about who they are.
      Citation: Autism
      PubDate: 2022-04-11T12:37:15Z
      DOI: 10.1177/13623613221086700
       
  • The implementation of the screening tool for autism in toddlers in Part C
           early intervention programs: An 18-month follow-up

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      Authors: Daina M Tagavi, Catherine C Dick, Shana M Attar, Lisa V Ibanez, Wendy L Stone
      Abstract: Autism, Ahead of Print.
      This study examined the feasibility of implementing the Screening Tool for Autism in Toddlers, an interactive Level-2 screen for autism spectrum disorder, within Part C Early Intervention settings. Participants included 69 Early Intervention providers (M age = 43.3 years, 93.7% females, 92.4% Whites) from nine programs who attended a one-day Screening Tool for Autism in Toddlers training workshop. Half of the providers reported using the Screening Tool for Autism in Toddlers, and reported it to be feasible and effective. Regardless of Screening Tool for Autism in Toddlers use, providers reported increased knowledge about recognizing the early signs of autism spectrum disorder following the workshop. Provider-reported self-efficacy regarding skills related to autism spectrum disorder screening increased significantly from baseline to the 18-month follow-up. Providers also described the facilitators (e.g. promotes communication with families) and barriers (e.g. certification process), that influenced their adoption. Results highlight the potential use of the Screening Tool for Autism in Toddlers within Early Intervention settings to identify autism spectrum disorder, and suggest an implementation model in which specific providers serve as a screening “point-person,” rather than expecting it to be used by all providers. Future research should aim to identify characteristics of agencies or providers that might facilitate Screening Tool for Autism in Toddlers use, as well as specific implementation plans and strategies that might promote long-term sustainability of Level-2 screening practices.This study was registered on ClinicalTrials.gov before the time of the first study enrollee. Registration number: NCT02409303; URL: https://clinicaltrials.gov/ct2/show/NCT02409303Lay abstractThe early detection of autism spectrum disorder can lead to access to autism spectrum disorder-specific services that have been shown to have a large impact on a child’s overall development. Although a stable diagnosis of autism spectrum disorder can be made by age 2 years, most children are not diagnosed until much later. To address this issue, this study examined the effectiveness of training Part C Early Intervention providers to use an interactive autism spectrum disorder screening tool, the Screening Tool for Autism in Toddlers. Sixty-nine providers attended a 1-day training workshop on the use of the Screening Tool for Autism in Toddlers. After the workshop, providers reported increased knowledge about recognizing the early signs of autism spectrum disorder, and about 45% of the providers reported using the Screening Tool for Autism in Toddlers with families in their caseloads 18 months after the training. These results suggest that the Screening Tool for Autism in Toddlers is feasible for use within Early Intervention settings. In addition, they suggest that specific providers might serve as a screening “point-person,” rather than expecting the Screening Tool for Autism in Toddlers to be used by all providers. Future research should aim to identify specific characteristics of agencies or providers that might be best suited for using the Screening Tool for Autism in Toddlers.
      Citation: Autism
      PubDate: 2022-04-11T12:06:42Z
      DOI: 10.1177/13623613221086329
       
  • Measuring subjective quality of life in autistic adults with the PROMIS
           global–10: Psychometric study and development of an autism-specific
           scoring method

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      Authors: Zachary J Williams, Carissa J Cascio, Tiffany G Woynaroski
      Abstract: Autism, Ahead of Print.
      Quality of life is widely acknowledged as one of the most important outcomes in autism research, but few measures of this construct have been validated for use in autistic people. The goal of the current study was to examine the psychometric properties of the Patient-Reported Outcomes Measurement Information System Global–10, an established self-report measure of health-related quality of life, in a sample of 901 autistic adults (predominantly female and adult-diagnosed) recruited from the Simons Foundation Powering Autism Research for Knowledge cohort. Using an item response theory framework, we performed a comprehensive psychometric evaluation of the Patient-Reported Outcomes Measurement Information System Global–10 in this sample, examining its latent structure, differential item functioning, reliability, and construct validity. After developing an autism-specific measurement model, the Patient-Reported Outcomes Measurement Information System Global–10 demonstrated excellent psychometric properties in the current sample, including excellent model-data fit, high reliability, minimal differential item functioning across subgroups of autistic adults, and an expected pattern of correlations with external variables. Exploratory analyses indicated that lower quality of life was associated with female sex and identified as a sexual/gender minority. A free online score calculator has been created to facilitate the use and interpretation of normed Patient-Reported Outcomes Measurement Information System Global–10 general quality of life latent trait scores for clinical and research applications (available at https://asdmeasures.shinyapps.io/promis_qol).Lay AbstractQuality of Life an outcome that both researchers and autistic advocates agree is extremely important to consider when implementing services, interventions, and supports for autistic people. However, there has been little research on the topic of how quality of life can best be measured in autistic people or whether existing quality of life questionnaires are appropriate for use in the autistic population. This study aimed to validate an established quality of life measure, the Patient-Reported Outcomes Measurement Information System Global–10, in a large sample of autistic adults recruited online. We created a new way to score the Patient-Reported Outcomes Measurement Information System Global–10 scale and generate a “General quality of life” score specific to autistic adults. This new score performed very well in this sample, showing very little measurement error and relating in expected ways to similar constructs, such as physical health and emotional distress. Exploratory analyses found that lower quality of life was associated with female sex and self-identification as a sexual or gender minority (i.e. LGBTQ + identity). These findings suggest that the new Patient-Reported Outcomes Measurement Information System Global–10 quality of life score is a reliable and valid measure of quality of life in autistic adults, although additional studies are necessary to further explore its measurement properties in other subsets of the autistic population, such as individuals with intellectual disabilities. This measure is freely available for use as an outcome in both research and clinical practice, and an online score calculator is available to support the use of this measure in real-world applications.
      Citation: Autism
      PubDate: 2022-04-11T12:05:20Z
      DOI: 10.1177/13623613221085364
       
  • Calm with horses' A systematic review of animal-assisted interventions
           for improving social functioning in children with autism

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      Authors: Jon H Sissons, Elise Blakemore, Hannah Shafi, Naomi Skotny, Donna M Lloyd
      Abstract: Autism, Ahead of Print.
      The aim of this systematic review was to evaluate the effect of animal-assisted interventions on social functioning in children with autism spectrum disorder, based on evidence from randomized control trials. Included studies were articles published in English, with school aged children from 4 to 18 years with autism spectrum disorder. Databases searched were MEDLINE, PsycINFO, EMBASE, Web of Science, CINAHL and Zoological Record. Data extraction from included studies included demographics and sample features, interventions and controls descriptions, outcome measures, study funding and descriptive statistics. Risk of bias was assessed, considering randomization, allocation concealment, blinding, attrition, selective reporting and other sources of bias. Studies were synthesized narratively based on the animal approach taken and the use of waitlist versus active controls. Nine studies were included reporting across eight trials. Studies overall reported improvements in social functioning following equine-assisted services, with preliminary evidence suggesting improvements are sustained in the short and medium term. Insufficient evidence was available to draw conclusions on the efficacy of other animal-assisted interventions. Future research should aim to address the limitations common to included designs.Lay abstractChildren with autism typically experience difficulties interacting socially with others when compared to their non-autistic peers. Establishing how effective interventions are for improving social functioning is important to help inform what should be offered to children with autism. This study reviewed how effective interventions that involved interaction with a live animal, known as animal-assisted interventions, are in improving social functioning in children with autism. A systematic search of the evidence on this topic found nine studies, which were explored for the effectiveness of animal-assisted interventions and the quality of methods used. Overall, these studies showed improvements in social functioning following equine-assisted or therapeutic horse-riding interventions, with initial evidence showing improvements are sustained in the short and medium term. However, several issues were identified, which limit the strength of any conclusions that can be drawn from this evidence. For example, in many studies people assessing the children were aware that they received the intervention or were in a control group. There was also not enough evidence available to draw conclusions on the effectiveness of other animal-assisted interventions. Future research should address the limitations that were common in the designs of these studies and investigate the potential benefit of other animal populations, such as dogs and cats.
      Citation: Autism
      PubDate: 2022-04-11T12:02:26Z
      DOI: 10.1177/13623613221085338
       
  • The creator did not give me more than I can handle: Exploring coping in
           parents of Black autistic children

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      Authors: Ericka M Lewis, Sarah Dababnah, Kelley R Hollie, Irang Kim, Yao Wang, Wendy E Shaia
      Abstract: Autism, Ahead of Print.
      There is a paucity of studies that center on the lived experiences of Black families raising autistic children, and major gaps remain in our understanding of how parents of Black autistic children cope with stressors. Drawing from the Black family stress and coping model, this mixed-methods study explored coping strategies utilized by parents of Black autistic children. Twenty-two parents completed the Ways of Coping Questionnaire and participated in semi-structured interviews. Using grounded theory methods, we conducted data collection and analyses simultaneously until we did not identify new themes. Our quantitative and qualitative results were generally aligned. We found that parents used an array of coping strategies, at times combining different methods, to address complex stressors. Parents also expressed the need for more social support from providers, as well as a desire for inclusive spaces where they could engage with other parents whom they felt could better relate to the stressors they encountered. Study findings also suggest that kinship support, church involvement, and collective socialization are key protective factors in Black communities. Therefore, understanding the role culture plays in the use and effectiveness of coping strategies is essential to improving healthcare and other systems of care.Lay abstractParents of Black autistic children use several strategies to cope with daily stressors. These strategies include seeking social support, self-care, and optimism. We asked parents about their experiences receiving treatment services for their autistic child and how they reduce parenting stress. Twenty-two parents completed a coping survey and participated in individual interviews. Few studies have explored the experiences of Black families raising autistic children, and it’s important for healthcare and other systems of care to understand the role culture, race, and ethnicity play in the use of coping strategies. In our study, the majority of parents relied on social support to relieve stress and identified partners, family, and community members, as their most useful sources of support. Connecting with other parents of autistic children, through support groups and social media, also helped parents relieve stress. Parents discussed using self-care activities (e.g. church, exercising, listening to music) to cope with stressors. Several parents described how prayer and meditation helped them reframe stressful situations and gain more patience and appreciation for “what’s important.” The findings of this work demonstrate the need for professionals to have ongoing and deeper conversations about the ways in which parents deal with stressors. In particular, clinicians should leverage the strengths of Black families and promote strategies that are culturally informed and engaged.
      Citation: Autism
      PubDate: 2022-04-08T10:43:22Z
      DOI: 10.1177/13623613211070865
       
  • Using EMDR with autistic individuals: A Delphi survey with EMDR therapists

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      Authors: Naomi Fisher, Caroline van Diest, Marguerite Leoni, Debbie Spain
      Abstract: Autism, Ahead of Print.
      Autistic individuals are at greater risk of experiencing adverse and traumatic life events. Eye Movement Desensitisation and Reprocessing (EMDR), a psychological therapy, is potentially effective for treating the constellation of difficulties arising from traumatic experiences, as well as mental health conditions. Yet minimal research has focused on how EMDR may require adaptation to improve its accessibility, acceptability and effectiveness for autistic individuals. In a three-round Delphi survey, 103 EMDR therapists were asked about barriers to EMDR for autistic individuals and adaptations employed to enhance therapy, so as to generate consensus about important or essential components of adaptations to EMDR. Four types of barriers were highlighted: client-related characteristics, therapist-related characteristics, differences in the therapeutic relationship and systemic issues. One hundred and twenty-four adaptations were identified, including 35 general adaptations (i.e. relevant across EMDR phases), 81 relating to specific EMDR phases and 8 about EMDR clinical supervision. Of these, 27 adaptations were used often or always by at least 80% of participants; a further 61 were sometimes incorporated within therapy, depending on the client. Study findings highlight the need for EMDR therapists to have training about autism and the potential ways of tailoring EMDR, and that individual case conceptualisation is key.Lay abstractEye Movement Desensitisation and Reprocessing (EMDR) is a psychological therapy that can help people process memories and distress about past events, so they have less impact on their daily lives. EMDR can be effective for treating symptoms of post-traumatic stress disorder, including nightmares and anxiety. Psychological therapies usually require adaptation so they are more accessible and effective for autistic people, but minimal research has focused on how best EMDR can be adapted. In this online survey study, we asked 103 EMDR therapists about barriers they think autistic people face when trying to have EMDR and what adaptations they use in their everyday practice. Four barriers were highlighted: client-related characteristics, therapist-related characteristics, differences in the therapeutic relationship and broader issues. Therapists identified a range of adaptations that can potentially be useful for autistic people, relating to being flexible, communicating clearly and having an awareness of individual differences. Many therapists emphasised the importance of not making assumptions about a person based on their autism diagnosis. Overall, the study findings suggest adaptations to EMDR are likely to be useful, but how relevant they are depends on each person.
      Citation: Autism
      PubDate: 2022-04-06T01:22:23Z
      DOI: 10.1177/13623613221080254
       
  • Prevalence of co-occurring autism spectrum disorder and attention
           deficit/hyperactivity disorder among children in the United States

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      Authors: Myriam Casseus
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder and attention deficit/hyperactivity disorder are neurodevelopmental disorders with high rates of co-occurrence. However, there is a dearth of large, nationally representative studies examining the prevalence of co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder among children. The aim of this study was to estimate the prevalence of parent-reported co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder in the United States and examine correlates of co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder by sociodemographic and household factors. Data were analyzed from the 2016–2018 National Survey of Children’s Health. A total of 88,051 children aged 3–17 years were included in the analysis. Bivariate and multivariable analyses were conducted to assess the associations between sociodemographic and household characteristics and current co-occurrence of autism spectrum disorder and attention deficit/hyperactivity disorder. An estimated 1.2% of children (740,816) aged 3–17 years had co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder. Sex, age, race/ethnicity, health status, and health insurance were associated with having co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder. Children who were Black, non-Hispanic (adjusted odds ratio = 0.63; 95% confidence interval [0.40, 0.99]) or multi-racial/other, non-Hispanic (adjusted odds ratio = 0.58; 95% confidence interval [0.42, 0.80]) had significantly lower odds of co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder than White non-Hispanics. Findings suggest implementing early developmental screening and surveillance for co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder and coordinating strategies that optimize early identification and intervention for all children suspected of having co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder, particularly those from underrepresented groups.Lay abstractAutism spectrum disorder and attention deficit/hyperactivity disorder are neurodevelopmental disorders that often co-occur in children. However, there are few large, nationally representative studies examining the prevalence of co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder in children. The aim of this study was to estimate the prevalence of parent-reported co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder in the United States and examine associations between having co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder and sociodemographic and household factors. Data were analyzed from the 2016–2018 National Survey of Children’s Health. A total of 88,051 children aged 3–17 years old were included in the analysis. Statistical analyses were conducted to assess the associations between sociodemographic and household characteristics and current co-occurrence of autism spectrum disorder and attention deficit/hyperactivity disorder. Approximately 1.2% of children (740,816) aged 3–17 years had co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder. Children who were male, older, reported poor health, or had public or combined public and private health insurance were more likely to have co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder. Conversely, children who were Black, non-Hispanic or multi-racial/other, non-Hispanic were less likely to report co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder than White non-Hispanics. Findings suggest implementing early developmental screening and surveillance for co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder, and coordinating strategies that optimize early identification and intervention for all children suspected of having co-occurring autism spectrum disorder and attention deficit/hyperactivity disorder, particularly those from underrepresented groups.
      Citation: Autism
      PubDate: 2022-04-01T10:44:54Z
      DOI: 10.1177/13623613221083279
       
  • A randomized controlled trial into the effects of probiotics on
           electroencephalography in preschoolers with autism

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      Authors: Lucia Billeci, Alejandro Luis Callara, Letizia Guiducci, Margherita Prosperi, Maria Aurora Morales, Sara Calderoni, Filippo Muratori, Elisa Santocchi
      Abstract: Autism, Ahead of Print.
      Previous studies suggest that autism spectrum disorders are characterized by alterations in the microbiota–gut–brain axis. Probiotics may modify the composition and the functionality of the gut microbiota of autism spectrum disorder individuals, with possible cascading effects on brain function. In this study, we analyzed possible brain modifications induced by the administration of probiotics in 46 children with autism spectrum disorder using electroencephalography. A randomized 6-month controlled trial was performed. In subjects treated with probiotics, we observed a decrease of power in frontopolar regions in beta and gamma bands, and increased coherence in the same bands together with a shift in frontal asymmetry, which suggests a modification toward a typical brain activity. Electroencephalography measures were significantly correlated with clinical and biochemical measures. These findings support the importance of further investigations on probiotics’ benefits in autism spectrum disorder to better elucidate mechanistic links between probiotics supplementation and changes in brain activity.Lay abstractThis study investigates the effects of a probiotic on preschoolers’ brain electrical activity with autism spectrum disorder. Autism is a disorder with an increasing prevalence characterized by an enormous individual, family, and social cost. Although the etiology of autism spectrum disorder is unknown, an interaction between genetic and environmental factors is implicated, converging in altered brain synaptogenesis and, therefore, connectivity. Besides deepening the knowledge on the resting brain electrical activity that characterizes this disorder, this study allows analyzing the positive central effects of a 6-month therapy with a probiotic through a randomized, double-blind placebo-controlled study and the correlations between electroencephalography activity and biochemical and clinical parameters. In subjects treated with probiotics, we observed a decrease of power in frontopolar regions in beta and gamma bands, and increased coherence in the same bands together with a shift in frontal asymmetry, which suggests a modification toward a typical brain activity. Electroencephalography measures were significantly correlated with clinical and biochemical measures. These findings support the importance of further investigations on probiotics’ benefits in autism spectrum disorder to better elucidate mechanistic links between probiotics supplementation and changes in brain activity.
      Citation: Autism
      PubDate: 2022-04-01T09:36:37Z
      DOI: 10.1177/13623613221082710
       
  • Social support and links to quality of life among middle-aged and older
           autistic adults

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      Authors: Rebecca A Charlton, Goldie A McQuaid, Gregory L Wallace
      Abstract: Autism, Ahead of Print.
      Social support has a positive impact on quality of life (QoL) in neurotypical older adults and young autistic adults, but the association for older autistic adults is unclear. Autistic adults (n = 388; mean age = 40–83 years) were recruited via Simons Powering Autism Research for Knowledge (SPARK) Research Match. Participants completed questionnaires online querying demographic information, depression, and anxiety symptomatology, QoL (physical, psychological, social, environmental, and autism-specific) and social support (instrumental, subjective, and social interactions). Regression analyses examined whether different aspects of social support contributed to models explaining each domain of QoL. Models explaining QoL were significant. Subjective social support significantly contributed to the models for all aspects of QoL; social interactions contributed to the models for Physical and Psychological QoL, whereas instrumental support contributed to models for social, environmental and autism-specific QoL. Social support is an important contributor to the QoL of middle-aged and older autistic adults, after accounting for demographic factors and depression. Further studies are required to understand whether age-related changes in social support and QoL are the same for autistic as non-autistic older adults in order to identify and implement appropriate support.Lay abstractSocial support can take many forms, such as practical help, time spent socially with others, or the satisfaction with personal relationships. Social support is known to affect quality of life (QoL) in both non-autistic older and autistic young adults. QoL reflects how satisfied an individual is with their life either overall or in a certain area. We know little about middle-aged and older autistic adults’ experiences of social support or QoL. In this study, 388 adults aged 40–83 years old, completed online questionnaires asking about background such as age and sex, depression and anxiety symptoms, QoL (physical, psychological, social, environmental, and autism-specific), and different types of social support. Even after taking into account background, depression, and anxiety, social support was important for individuals’ QoL. To our knowledge this is the first paper to examine the relationship between social support and QoL in middle-aged and older autistic adults. Improving social support may have a significant impact on the QoL of older autistic adults. Future studies should examine whether age-related changes in social support (size, content, and arrangement of social networks) that are common in non-autistic aging, also occur among older autistic adults.
      Citation: Autism
      PubDate: 2022-04-01T09:35:05Z
      DOI: 10.1177/13623613221081917
       
  • The sensory experiences of autistic people: A metasynthesis

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      Authors: Jordan Sibeoni, Laura Massoutier, Marie Valette, Emilie Manolios, Laurence Verneuil, Mario Speranza, Anne Revah-Levy
      Abstract: Autism, Ahead of Print.
      Qualitative literature reports the sensory experiences of autistic individuals in the first person. Following a thematic synthesis procedure, this metasynthesis aimed to explore specifically the lived experience of these sensory features. Four databases were systematically searched for qualitative studies describing sensory issues reported by autistic individuals. Article quality was assessed with the Critical Appraisal Skills Programme. Thematic analysis was used to identify and synthesise key themes. The 32 articles included reported data from 430 participants. Data analysis produced two themes structuring the sensory experiences of autistic people: (1) the everyday experience through body, thoughts and emotions, and (2) the relational experience, relationships being experienced as both a problem and a solution. Four dimensions are found in our results: physical, emotional, relational and social. Whereas a scientific approach to the sensory experience of autistic people is based on a cause–effect model, our results suggest that autistic people experience these dimensions holistically, as inseparable, and not in terms of cause and effect. This original finding brings new research perspectives, beyond the dichotomy between sensory features and social communications issues, and concrete implications within the health care system to provide more effective and respectful care to autistic people.Lay abstractSensory atypicalities are very common among autistic people and are integrated in several theories and explanatory models of autism. Qualitative studies have explored these singular sensory experiences from the perspectives of autistic people themselves. This article gathers all these qualitative studies and provides original findings regarding the everyday sensory experience of autistic people, that is, around four dimensions – physical, emotional, relational and social – experienced holistically, as inseparable, and not hierarchically or in terms of cause and effect. Adopting this holistic view could improve the adaptation of the sensory environment in health care facilities and the training of professionals around this specific issue.
      Citation: Autism
      PubDate: 2022-04-01T09:33:25Z
      DOI: 10.1177/13623613221081188
       
  • “[I] don’t wanna just be like a cog in the machine”: Narratives of
           autism and skilled employment

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      Authors: Dora M Raymaker, Mirah Sharer, Joelle Maslak, Laurie E Powers, Katherine E McDonald, Steven K Kapp, Ian Moura, Anna “Furra” Wallington, Christina Nicolaidis
      Abstract: Autism, Ahead of Print.
      Autistic people experience disparities in employment which may be exacerbated for individuals in skilled employment. Little is known about the experiences of autistic people in skilled employment or how they define success. We used a community-based participatory research approach to conduct a thematic analysis with an inductive approach at a semantic level through a critical realist paradigm. We interviewed 45 autistic people with skilled training, 11 supervisors, and 8 key informants. We purposively sampled to maximize variation. We addressed trustworthiness through multiple coders and peer debriefing. Common themes included high stakes of disclosure, unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma/burnout, autistic advantages in the workplace, and complex dimensions of discrimination. Participants defined success as opportunities for growth, work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Strategies to facilitate success suggested a multi-faceted and wholistic approach including attention to the role of supervisors. Our findings suggest a highly customizable, systems-focused, multifaceted approach to autism employment intervention could be useful in improving skilled employment outcomes. We recommend further work particularly in the areas of disclosure and destigmatizing disability in the workplace.Lay abstractAutistic people are less likely to be employed than the general population. Autistic people with skilled training (e.g. training for jobs in acting, plumbing, science, or social work) might be even less likely to get a good job in their field. Little is known about the experiences of autistic people in skilled employment or what employment success means to them. We interviewed 45 autistic people with skilled training in a wide range of fields, 11 job supervisors, and 8 topic experts. We asked them about their experiences, what they felt helped them to be successful at work, and what employment success means to them. Participants talked about the high stakes of disclosure, taking unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma and burnout, the autistic advantages in the workplace, and complex dimensions of discrimination. Participants said success meant opportunities for growth, good work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Things that helped them be successful included flexible, accepting workplaces, supportive and respectful supervisors, and direct communication. What we learned suggests that an individualized, wholistic approach to autism employment intervention that considers both employers and employees and employee mental health could be useful. We also recommend more research into disclosure and destigmatizing disability at work.
      Citation: Autism
      PubDate: 2022-04-01T09:31:36Z
      DOI: 10.1177/13623613221080813
       
  • Greater gender diversity among autistic children by self-report and
           parent-report

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      Authors: Blythe A Corbett, Rachael A Muscatello, Mark E Klemencic, Millicent West, Ahra Kim, John F Strang
      Abstract: Autism, Ahead of Print.
      Emerging research suggests overrepresentation of gender diversity among autistic youth. Previous gender diversity research with autistic children has relied on parent-report based on a single question. The Gender Diversity Screening Questionnaire–Self-Report and Parent-Report assessed gender diversity experiences from 244 children (140 autism spectrum disorder and 104 typically developing), between 10 and 13 years, and their parents. Parent-report Child Behavior Checklist Item-110, “Wishes to be the opposite sex,” was also collected. Autistic children endorsed higher Gender Diversity Screening Questionnaire–Self-Report Binary Gender Diversity, t(223.21) = –2.83, adjusted p = 0.02, d = –0.35, and Nonbinary Gender Diversity, t(191.15) = –3.79, adjusted p = 0.001, d = –0.46, than typically developing children. Similarly, for Gender Diversity Screening Questionnaire–Parent-Report, there was a significant gender-body incongruence difference between the groups, t(189.59) = –2.28, adjusted p = 0.05, d = –0.30. Within-group analyses revealed that parents of autistic females-assigned-at-birth reported significantly more gender-body incongruence than males-assigned-at-birth, t(32.91) = –3.78, p 
      Citation: Autism
      PubDate: 2022-04-01T01:07:24Z
      DOI: 10.1177/13623613221085337
       
  • ‘It’s being a part of a grand tradition, a grand counter-culture which
           involves communities’: A qualitative investigation of autistic community
           connectedness

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      Authors: Monique Botha, Bridget Dibb, David M Frost
      Abstract: Autism, Ahead of Print.
      Autistic people report greater comfort socialising and easier communication with each other. Despite autism being stereotypically associated with lack of social motivation, an autistic community has been described briefly in the literature but is not well understood. Autistic community connectedness may play a role in promoting wellbeing for autistic people. This qualitative study involved interviewing autistic individuals (N = 20) in-person, via a video-based platform, a text-based platform or over email to investigate autistic community connectedness. Critical grounded theory tools were used to collect and analyse the data. There were three elements of autistic community connectedness: belongingness, social connectedness and political connectedness. Belongingness referred to the sense of similarity that autistic people experienced with each other. Social connectedness referred to specific friendship participants formed with other autistic people. Political connectedness referred to a connectedness to the political or social equality goals of the autistic community. Participants described the benefits of autistic community connectedness as being increased self-esteem, a sense of direction and a sense of community not experienced elsewhere. Lack of connectedness involved ambivalence with an autistic identity and/or feelings of internalised stigma. Experiences of autistic community connectedness may have implications for autistic people’s wellbeing, as well as how they cope with minority stress.Lay abstractA sense of being connected to other autistic people has been reported anecdotally. Friendships and connectedness may be important to autistic people and beneficial for their wellbeing. Our research aimed to understand the autistic community by interviewing 20 autistic people about their experiences of being connected to other autistic people. Participants were interviewed in person, over video, using a text-based software to type or over email. Participants detailed three parts of autistic community connectedness: a sense of belonging, social connection with autistic friends and political connectedness. The friendships autistic people had with one another were deemed to be very important to participants because it gave them confidence, provided companionship and made them happy. Some participants did not experience connectedness to the autistic community. These participants also found autism to be less important to their identity and had fewer positive feelings about being autistic. This research is important as it raises awareness that community connectedness is viewed as important to this group. It is possible that community connectedness may help protect the mental health of autistic people when they face stigma or negative life experiences in society.
      Citation: Autism
      PubDate: 2022-03-23T09:24:56Z
      DOI: 10.1177/13623613221080248
       
  • ‘We’ve come a very, very, long way’ Overcoming stigma of autism: An
           interpretative phenomenological analysis within the UK Jewish community

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      Authors: David Ariel Sher, Jenny L Gibson, Hannah Ella Sher
      Abstract: Autism, Ahead of Print.
      Autistic people contend with high levels of stigma in many cultures worldwide. There is a scarcity of literature on stigma in relation to autism in faith communities and virtually no research focussing on this topic in Jewish communities. In this study, we aimed to explore experiences of stigma towards autism and sought views on what steps have and can be taken to reduce such stigma. Using an interpretative phenomenological analysis approach, we conducted semi-structured interviews with 10 participants within the UK Jewish community, in both mainstream and specialist autistic schools. Interviews were conducted over 2 months in 2020. During analysis, 5 superordinate (central) themes and 13 subordinate themes were abstracted. Superordinate themes included ‘Stigma not specific to the Jewish community’; ‘Considerable strides made’; ‘More a lack of knowledge or denial than stigma’; ‘Fear of stigma is a real concern but not widely prevalent’; and ‘Potent factors that reduce stigma in the Jewish community’. We recommend workshops for greater awareness and training for teachers and parents on autism and autistic children’s experiences. We also recommend the formation of specialist autism schools in other communities and promotion of positive narratives concerning autistic people, as this successfully reduced stigma within the Jewish community.Lay abstractAutistic people contend with high levels of stigma in a wide array of cultures worldwide. There is a scarcity of literature on stigma in relation to autism in faith communities, with some limited research on this issue in Christian, Muslim and Hindu populations. There is virtually no research focussing on this topic in Jewish communities and to our knowledge, none at all within UK Jewish contexts. In this study, we aimed to explore experiences of stigma towards autism and sought views on what steps have and can be taken to reduce such stigma. Using an interpretative phenomenological analysis approach, we conducted semi-structured interviews with 10 participants within the UK Jewish community, including parents, rabbis, SENDCos, teachers, and headmasters of autistic children in both mainstream and specialist autistic schools. Interviews were conducted over 2 months in 2020. During analysis, 5 superordinate (central) themes and 13 subordinate themes were abstracted from the data. Superordinate themes included ‘Stigma not specific to the Jewish community’; ‘Considerable strides made’; ‘More a lack of knowledge or denial than stigma’; ‘Fear of stigma is a real concern but not widely prevalent’; and ‘Potent factors that reduce stigma in the Jewish community’. We recommend workshops for greater awareness and training for teachers and parents on autism and autistic children’s experiences. We also recommend the formation of specialist autism schools in other communities and promotion of positive narratives concerning autistic people, as this successfully reduced stigma within the Jewish community.
      Citation: Autism
      PubDate: 2022-03-23T06:56:04Z
      DOI: 10.1177/13623613221075099
       
  • Individuals with autism show non-adaptive relative weighting of perceptual
           prior and sensory reliability

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      Authors: Nahal Binur, Hagit Hel-Or, Bat-Sheva Hadad
      Abstract: Autism, Ahead of Print.
      Modulation in sensory-perceptual processing is a known characteristic of autism, although the underlying mechanism is debated. A prevailing account is formulated in Bayesian terms, where either a reduced prior or reduced noise in the measurement (sensory input) may account for the modulated perception as expressed by the posterior distribution. However, research has shown that individuals with autism use priors in some conditions, and to the same extent as neurotypicals, while other studies fail to show enhanced sensory sensitivity in these individuals. We asked whether the modulated prior effects on perception may arise from non-adaptive relative weighting of priors to sensory reliability. We employed a Two-alternative forced choice (2AFC) width discrimination task, using the width–height illusion, which is based on a long-term acquired bias, where a taller rectangle is typically perceived as thinner than a shorter one. The measurement was manipulated by adding Gaussian blur on the vertical edges of the rectangles. Typically developed individuals displayed the expected increase in bias as a function of noise in the measurement. High-functioning individuals with autism exhibited typical perceptual resolutions and similar susceptibility to the illusion. However, the relative weighting of the perceptual bias and the sensory input differed in their effect on the two groups. Individuals with autism showed a non-adaptive, consistent bias across the different degrees of sensory noise, while typically developed individuals displayed monotonically increasing biases. Cluster analyses showed that this difference in the relative weighting between the groups was preserved regardless of the overall illusion magnitude displayed by individuals in each cluster.Lay abstractUnique perceptual skills and abnormalities in perception have been extensively demonstrated in those with autism for many perceptual domains, accounting, at least in part, for some of the main symptoms. Several new hypotheses suggest that perceptual representations in autism are unrefined, appear less constrained by exposure and regularities of the environment, and rely more on actual concrete input. Consistent with these emerging views, a bottom-up, data-driven fashion of processing has been suggested to account for the atypical perception in autism. It is yet unclear, however, whether reduced effects of prior knowledge and top-down information, or rather reduced noise in the sensory input, account for the often-reported bottom-up mode of processing in autism. We show that neither is sufficiently supported. Instead, we demonstrate clear differences between autistics and neurotypicals in how incoming input is weighted against prior knowledge and experience in determining the final percept. Importantly, the findings tap central differences in perception between those with and without autism that are consistent across identified sub-clusters within each group.
      Citation: Autism
      PubDate: 2022-03-23T06:54:26Z
      DOI: 10.1177/13623613221074416
       
  • The spectrum of attitudes towards the spectrum of autism and its
           

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      Authors: Kinga Ferenc, Katarzyna Byrka, Magdalena Ewa Król
      Abstract: Autism, Ahead of Print.
      Attitude of mothers towards their children’s autism may play a role in mothers’ psychological well-being. We investigated the predictive value of how mothers understand autism (as a neurodivergence or a developmental disorder) on their psychological distress. A group of 371 mothers of children on the autism spectrum participated in this study. We found that understanding autism as a neurodivergence was related to lower psychological distress in mothers, even after controlling for the level of autism symptoms. However, when controlling for caregiver burden, their attitude towards autism was no longer significant in explaining their psychological distress. These findings suggest that the way mothers understand autism may be important for their psychological adjustment. However, it also suggests that mothers of children on the autism spectrum may adopt different attitudes towards autism, depending on their child’s level of autism symptoms and the caregiver burden.Lay abstractMothers of children on the autism spectrum experience high levels of emotional distress. Mothers cope with stress by having their own thoughts and opinions about their children. In this study, we tested whether the way mothers perceive autism may contribute to the level of distress they feel. Some mothers see autism as a developmental disorder that needs to be cured, but some see autism as a type of mind that needs to be accepted. Our findings showed that mothers who see autism more as a type of mind are generally less stressed. But we also showed that it matters how severe are the child’s symptoms, and how heavy was the perceived burden of caring for the child. These results imply that it is worth working on attitudes towards autism to help mothers cope better. But at the same time, we argue that mothers should not be judged for their perceptions of autism, as there is a huge spectrum of a child’s characteristics and family’s life circumstances.
      Citation: Autism
      PubDate: 2022-03-17T04:27:38Z
      DOI: 10.1177/13623613221081185
       
  • Healthcare clinician perspectives on the intersection of autism and gender
           dysphoria

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      Authors: Kate Cooper, William Mandy, Ailsa Russell, Catherine Butler
      Abstract: Autism, Ahead of Print.
      Autistic people are over-represented at gender clinics, but there is limited research to guide clinical practice with this group. We investigated the perspectives of clinicians working with autistic patients who experience gender dysphoria. We asked clinicians about the relationship between autism and gender dysphoria, and whether they work differently with this patient group. We recruited clinicians from young person and adult gender clinics and autism services (n = 16). We analysed the interview transcripts using interpretative phenomenological analysis (IPA). The first overarching theme was clinician understanding of the intertwined experiences of patients, with four subthemes: (a) coming to an individualised understanding of autism, gender dysphoria, and mental health; (b) different ways of thinking about gender; (c) social differences as barriers and facilitators to gender comfort; (d) the challenge of sensory sensitivities and puberty. The second overarching theme was mismatch of patient and clinician communication styles and goals, with three subthemes: (a) different communication of gender needs; (b) changing clinical sessions to overcome barriers; (c) tension between clinician and patient aims and thinking styles. We conclude that autism adaptations should be made in gender settings, by increasing clinician understanding of how autism and gender dysphoria can intersect, as well as by making adjustments to clinic processes.Lay AbstractAutistic people are more likely to have a gender identity which does not match their sex assigned at birth. Some people experience distress about their sex and gender not matching, which is called gender dysphoria. Such individuals may wish to attend a gender clinic to access healthcare support for gender dysphoria. Currently, there is limited evidence to help clinicians best support autistic people who need healthcare for gender dysphoria. We wanted to find out what healthcare clinicians think about working with autistic patients with gender dysphoria. We interviewed 16 clinicians who work in healthcare services with adults and young people who are autistic and experience gender dysphoria. We recorded the interviews and carefully analysed the content to find key themes. We found that clinicians worked with patients to try and better understand their experiences of gender dysphoria. Clinicians identified features of autism that they believed were related to gender identity and dysphoria including different thinking styles, social differences, and sensory sensitivities. Clinicians noticed that autistic people spoke about their gender in different ways to non-autistic people. Clinicians tried to adapt their practice to better meet the needs of their autistic patients. These adaptations tended to focus on differences in the assessment process, for example, offering longer or shorter appointments and changing their communication style. We conclude that clinicians were offering an individualised approach to autistic patients experiencing gender dysphoria. However, these clinicians were particularly interested in working with autistic people, and so may not be representative of the wider clinician population. Clinicians working in this area should receive training on autism adaptations and the intersection of autism and gender dysphoria.
      Citation: Autism
      PubDate: 2022-03-14T10:08:42Z
      DOI: 10.1177/13623613221080315
       
  • Adults with autism spectrum disorder and the criminal justice system: An
           investigation of prevalence of contact with the criminal justice system,
           risk factors and sex differences in a specialist assessment service

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      Authors: Charlotte E Blackmore, Emma L Woodhouse, Nicola Gillan, Ellie Wilson, Karen L Ashwood, Vladimira Stoencheva, Alexandra Nolan, Grainne M McAlonan, Dene M Robertson, Susannah Whitwell, Quinton Deeley, Michael C Craig, Janneke Zinkstok, Rob Wichers, Debbie Spain, Ged Roberts, Declan GM Murphy, Clodagh M Murphy, Eileen Daly
      Abstract: Autism, Ahead of Print.
      The behavioural and cognitive difficulties of some adults with autism spectrum disorder (ASD) may increase their risk of contact with the criminal justice system (CJS) as a potential suspect. There has been limited investigation of ASD and offending and available evidence is mixed. A retrospective review was completed of medical records of 1570 adults (17–75 years old) who were referred for an ASD assessment over a 17-year period (April 2003 to February 2020). Of the adults diagnosed with ASD, 23% had previous contact with the CJS. Being male or diagnosed with co-occurring attention-deficit hyperactivity disorder (ADHD) and/or psychotic disorder were risk factors for CJS contact. However, the rates of contact with the CJS or for specific offences in the ASD group were never higher than adults referred to our service but not diagnosed with ASD. We did not include a general population comparison group, therefore cannot say how rates of CJS contact in ASD compare with the general population. Further health services research for adults with ASD is warranted, as modifying the treatable risk factors (i.e. ADHD) could reduce contact with the CJS. In addition, joint working between CJS and mental health services could reduce the risk of adults with ASD having CJS contact.Lay abstractThere has been growing interest in offending and contact with the criminal justice system (CJS) by people with autism spectrum disorder (ASD). However, it is not clear whether people with ASD offend more than those without ASD. Studies have started to look at whether there are particular offences people with ASD are more likely to commit and whether there are any factors that can affect whether someone comes into contact with the CJS as a potential suspect. This study looked at the patients who attended an ASD diagnostic service over a 17-year period to see the rate of contact with the CJS of those who were diagnosed with ASD and whether there were any particular factors that might increase the risk of CJS contact. Nearly a quarter of the ASD group had some contact with the CJS as a potential suspect. Factors that seemed to increase whether someone with ASD was more likely to have contact with the CJS were being male, being diagnosed with ADHD, and being diagnosed with psychosis. This study is one of the largest studies to investigate the rate of CJS contact as a potential suspect in a sample of adults with ASD in an attempt to give a clearer picture of what might influence someone with ASD to engage in offending behaviour in order to try to see what mental health services can offer to reduce the likelihood of someone with ASD coming into contact with the CJS, for example, treatment for another condition or support.
      Citation: Autism
      PubDate: 2022-03-09T11:18:56Z
      DOI: 10.1177/13623613221081343
       
  • Determinants of satisfaction with the detection process of autism in
           Europe: Results from the ASDEU study

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      Authors: Quentin Guillon, Sophie Baduel, Álvaro Bejarano-Martín, Ricardo Canal-Bedia, María MagÁn-Maganto, Clara FernÁndez-Álvarez, María Victoria Martín-Cilleros, María Cruz SÁnchez-Gómez, Patricia García-Primo, Mary Rose-Sweeney, Andrew Boilson, Renata LinertovÁ, Herbert Roeyers, Sara Van der Paelt, Diana Schendel, Christine Kloster Warberg, Susanne Cramer, Antonio Narzisi, Filippo Muratori, María Luisa Scattoni, Irma Moilanen, Anneli Yliherva, Evald Saemundsen, Sigridur Loa Jonsdottir, Magdalena Efrim-Budisteanu, Aurora Arghir, Sorina Mihaela Papuc, Astrid Vicente, Celia Rasga, Johanna Xenia Kafka, Luise Poustka, Oswald D Kothgassner, Rafal Kawa, Ewa Pisula, Tracey Sellers, Manuel Posada de la Paz, Bernadette Rogé
      Abstract: Autism, Ahead of Print.
      Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015–2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of the level of satisfaction. These findings highlight the aspects of the process that need to be improved to enhance the experience of the detection process and are therefore relevant to guide health administrations toward actions to be implemented to this effect.Lay abstractProfessional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one’s own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent–professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.
      Citation: Autism
      PubDate: 2022-03-09T11:16:54Z
      DOI: 10.1177/13623613221080318
       
  • Brief report: Validity and reliability of the Nigerian Autism Screening
           Questionnaire

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      Authors: Muideen O Bakare, Thomas W Frazier, Arun Karpur, Amina Abubakar, Moses Kachama Nyongesa, Paul Murimu Mwangi, Pamela Dixon, Izma Khaliq, Natalie K Gase, Jonathan Sandstrom, Nwanze Okidegbe, Michael Rosanoff, Kerim M Munir, Andy Shih
      Abstract: Autism, Ahead of Print.
      Informant-report measures for screening symptoms of autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs) are needed for low-resource settings if early identification is to be prioritized because early developmental concerns are likely to be expressed by parents and other caregivers. This paper describes the initial psychometric evaluation of the Nigeria Autism Screening Questionnaire (NASQ). Parents and other caregivers completed the NASQ on 12,311 children ages 1 to 18 in a Nigerian population sample as part of the World Bank National General Household Survey conducted in the country in 2016. Factor analyses indicated a parsimonious three-factor structure with social communication/interaction, repetitive sensory motor, and insistence on sameness dimensions. Measurement invariance was excellent across age and sex. Reliability of the subscales and total scale was good, and item response theory analyses indicated good measurement precision in the range from below average to high scores, crucial for screening, and tracking ASD symptoms. Studies with gold standard ASD diagnostic instruments and clinical confirmation are needed to evaluate screening and diagnostic accuracy. The NASQ appears to be a reliable instrument with a clear factor structure and potential for use in screening and tracking ASD symptoms in future Nigerian samples.Lay abstractEarly intervention for individuals with autism spectrum disorder (ASD) is dependent on reliable methods for early detection. Screening for ASD symptoms is an important strategy in low- and middle-income countries that often lack adequate service infrastructure. This study aims to conduct preliminary evaluation of the psychometric properties of a tool developed and deployed in Nigeria called the Nigerian Autism Screening Questionnaire (NASQ). Results demonstrated that NASQ, when used as a community-based survey, has a clear factor structure with consistent measurement across age and sex, and that scores from below average to well above average are measured reliably. Future research is needed to examine the performance of this tool against confirmatory ASD diagnosis in screening and diagnostic contexts to further understand the utility and applicability of this tool in the resource-limited Nigerian setting.
      Citation: Autism
      PubDate: 2022-03-09T11:14:50Z
      DOI: 10.1177/13623613221080250
       
  • Loneliness in autistic adults: A systematic review

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      Authors: Kana Umagami, Anna Remington, Brynmor Lloyd-Evans, Jade Davies, Laura Crane
      Abstract: Autism, Ahead of Print.
      In this systematic review, we examined quantitative, qualitative and mixed methods studies on loneliness in autistic adults. A total of 1460 articles were identified, and 34 of these met inclusion criteria. Results demonstrated that (1) there is a paucity of qualitative data providing first-hand descriptions of loneliness from autistic adults; (2) few empirical studies have used reliable/valid measures of loneliness developed specifically for autistic adults, and in just one study was a measure of loneliness developed for, and validated in, autistic adults; (3) the collective dimension of loneliness (i.e. belonging in society) has been described by autistic adults, yet has not been investigated as frequently as the intimate (i.e. romantic relationships) or relational (i.e. friend/family relationships) dimensions of loneliness; (4) the factors associated with increased loneliness in autistic adults include autistic characteristics, anxiety, depression and suicidal ideation, negative experiences and learned helplessness, a lack of autism understanding and acceptance, sensory avoidance, camouflaging and unemployment; and (5) the factors associated with decreased loneliness in autistic adults include having relationships, participation in social skill interventions and/or experiencing fewer difficulties with social skills, positive views and acceptance of oneself, being female and time spent engaging in activities (e.g. online gaming). Directions for future research are considered.Lay abstractRecently, researchers have been interested in how autistic people experience loneliness. Yet, most of this research has focused on loneliness in autistic children and young people. We present the results of a systematic review on loneliness in autistic adults. A systematic review is a rigorous way of searching for all existing research on a topic and summarizing the findings about specific questions. We searched for all research published on this topic until 9 April 2021. We found 34 articles that investigated loneliness in autistic adults. This research showed that (1) there is fairly little research that has involved directly asking autistic adults about their first-hand experiences of loneliness (e.g. what loneliness feels like for them); (2) few research studies have used loneliness questionnaires specifically developed for autistic adults (this was attempted in just one research study); (3) collective loneliness (i.e. loneliness associated with how much an autistic person feels they ‘fit in’ to society) seems important to autistic adults but has not been investigated as commonly as other aspects of loneliness (e.g. loneliness associated with romantic relationships or friendships); (4) things that might increase loneliness in autistic adults include anxiety and depression, and a lack of autism understanding and acceptance, for example; and (5) things that might reduce loneliness in autistic adults include having relationships and self-acceptance, for example. In our article, we discuss the kinds of future research on loneliness in autistic adults that might be useful.
      Citation: Autism
      PubDate: 2022-03-08T12:58:45Z
      DOI: 10.1177/13623613221077721
       
  • Factors associated with age of diagnosis in children with autism spectrum
           disorders: Report from a French cohort

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      Authors: Cécile Rattaz, Julie Loubersac, Cécile Michelon, Marie-Maude Geoffray, Marie-Christine Picot, Kerim Munir, Amaria Baghdadli
      Abstract: Autism, Ahead of Print.
      Early diagnosis of autism spectrum disorder is challenging due to its phenotypic and etiological heterogeneity, but critical for implementation of early interventions. We examined the age of autism spectrum disorder diagnosis in a sample of 554 children and adolescents enrolled in the ELENA cohort study in France with regard to the influences of child clinical characteristics, family antecedents, and socio-economic factors. The mean age of diagnosis was 4.9 years (±2.8 years) with prediction of diagnosis before 3 years of age related to co-occurring intellectual disability, higher autism spectrum disorder symptom severity, and lower communicative abilities. Children in low socio-economic status families tended to have earlier autism spectrum disorder diagnosis compared to those in high socio-economic status families, but they also had greater severity of intellectual impairment. The age of autism spectrum disorder diagnosis was not associated with the presence of an older sibling with autism spectrum disorder. The trend for an inverse relationship between socio-economic status and age of diagnosis suggests equity in the current diagnostic services in France where health coverage is universal and free. Nonetheless, better screening of more subtle/less severe forms of autism spectrum disorder is also needed, as well as further assessment of the link between co-occurrence of autism spectrum disorder and severity of intellectual impairment in lower socio-economic status families.Lay AbstractAutism spectrum disorder is an early onset neurodevelopmental disorder and diagnosis can be made as early as 18 months of age. Early diagnosis of autism spectrum disorder is critical as it leads to early intervention. Age of autism spectrum disorder diagnosis has been linked to the child profile as autism spectrum disorder is characterized by strong heterogeneity, but is also influenced by socio-economic factors. There is paucity of data on age of diagnosis of autism spectrum disorder in France. We therefore examined the age of autism spectrum disorder diagnosis in 554 children and adolescents enrolled in the ELENA cohort study with respect to the influences of child profile, family antecedents, and socio-economic factors. The mean age of diagnosis was 4.9 years (±2.8 years). Early diagnosis, before 3 years of age, was related to the co-occurrence of intellectual disability, higher autism spectrum disorder symptom severity, and lower communicative abilities. Children in low socio-economic status families tended to have an earlier diagnosis, but these children also had greater degree of intellectual impairment compared to children in high socio-economic status families. The age of autism spectrum disorder diagnosis was not associated with the presence of an older sibling with autism spectrum disorder. The observed current trend of an inverse relationship between socio-economic status and age of diagnosis of autism spectrum disorder suggests equitable access to autism spectrum disorder services in France where health coverage is universal and free. Better screening of more subtle/less severe forms of autism spectrum disorder is needed, as well as further assessment of the link between the co-occurrence of autism spectrum disorder and intellectual impairment in children in lower socio-economic status families.
      Citation: Autism
      PubDate: 2022-03-08T01:02:40Z
      DOI: 10.1177/13623613221077724
       
  • ‘Someone like-minded in a big place’: Autistic young adult’s
           attitudes towards autistic peer support in mainstream education

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      Authors: Catherine J Crompton, Sonny Hallett, Harriet Axbey, Christine McAuliffe, Katie Cebula
      Abstract: Autism, Ahead of Print.
      Autistic young people in mainstream schools often experience low levels of peer social support, have negative perceptions of their differences and feel disconnected from their school community. Previous research findings have suggested that encouraging autistic young people to explore autistic culture and spending time with autistic peers may be associated with more positive outcomes. Autism-specific peer support is a framework that may support this process. Thirteen participants (eight male/five female) completed semi-structured interviews, exploring the idea of autism-specific peer support within mainstream schools and the practicalities of how it may work within a school setting. Thematic analysis was applied, and three themes are reported: (1) neurodiversity and an ethos of inclusivity, (2) flexibility and (3) benefits and challenges of embedding peer support in the wider school community. The idea of autism-specific peer support for autistic pupils in mainstream secondary schools was generally positively received. Peer support may provide a unique opportunity for autistic pupils to interact in a natural, comfortable way; share useful strategies; and build their identities. Nevertheless, careful design, training and ongoing support, alongside awareness of the rights, needs and preferences of individual pupils involved are likely to be crucial in ensuring the success of any peer support programme.Lay abstractAutistic young people may struggle in mainstream schools and feel disconnected from their peers and their school. We know that autistic adults can benefit from spending time with other autistic people, but we don’t know if this is the case for younger autistic people. We conducted interviews with 13 autistic young adults in the United Kingdom who recently left mainstream schooling. We asked them if they would have been interested in being involved in autistic peer support when they were at school, and if so, what that peer support should look like. Results indicated that autistic young people were enthusiastic about the idea of peer support. They thought it was important that peer support was flexible to suit their needs at different times, as well as inclusive, positive, and embracing neurodiversity. They also discussed the potential benefits and difficulties of having a peer support system within a school setting. This adds to the growing body of research on the potential benefits of autistic-autistic interactions on autistic people’s well-being and sense of belonging. Findings can be used to help design pilot peer support projects in schools that can be tested to see how effective they are.
      Citation: Autism
      PubDate: 2022-03-05T09:20:12Z
      DOI: 10.1177/13623613221081189
       
  • Understanding feeding problems in autistic children: Exploring the
           interplay between internalizing symptoms and sensory features

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      Authors: Alessandro Crippa, Paola Colombo, Valentina De Cosmi, Alessandra Mazzocchi, Silvia Scaglioni, Giulia Carla Immacolata Spolidoro, Silvia Bettocchi, Veronica D’Oria, Nicole Viganò, Elisa Mani, Massimo Molteni, Carlo Agostoni
      Abstract: Autism, Ahead of Print.
      Feeding/behavior problems are highly prevalent in autistic children. This study aimed to explore the interplay between autistic features, sensory processing patterns, emotional/behavioral difficulties, and feeding problems in children with a clinical diagnosis of autism spectrum disorder. Ninety-nine children aged 1.5–5 years were assessed using the Children’s Eating Behavior Inventory (CEBI), the Child Behavior Checklist, the Revised Sensory Profile—Second Edition (SP-2), and the Food Frequency Questionnaire. The sample was divided into two subgroups based on the presence of feeding behavior problems as rated by parents on the CEBI. Children with feeding problems showed more severe internalizing symptoms and were more reactive to sensory stimuli than children without feeding problems. We also found a significant relationship between higher levels of autistic features and greater feeding behavior problems. A mediation analysis model indicated that this relationship was mediated by sensory processing, as reflected by SP-2 quadrants scores. Although preliminary, these findings suggest that children with higher levels of autistic features could be at greater risk of developing feeding behavior problems only if they also have a higher sensory sensitivity to environmental stimuli.Lay abstractThis study adds to a growing body of research documenting feeding problems in autistic children. Our results indicate that children aged 1.5–5 years with feeding problems may present with elevated internalizing difficulties and alterations in sensory processing when compared to same-age children without feeding problems. Our study also proposes that sensory processing may be an important, mediating factor in the relationship between autism features and feeding problems. The present work suggests, therefore, that implementers should thoroughly consider the sensory profile of autistic children prior to intervening on feeding behaviors. In particular, based on these preliminary findings, feeding interventions could benefit from environments designed to support children who can find them noisy and overwhelming.
      Citation: Autism
      PubDate: 2022-03-05T09:18:33Z
      DOI: 10.1177/13623613221080227
       
  • A survey of autistic adults, relatives and clinical teams in the United
           Kingdom: And Delphi process consensus statements on optimal autism
           diagnostic assessment for adults

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      Authors: Sarah Wigham, Barry Ingham, Ann Le Couteur, Colin Wilson, Ian Ensum, Jeremy R Parr
      Abstract: Autism, Ahead of Print.
      Accessing adult autism diagnostic pathways can be difficult. This study explored perspectives of UK autistic adults, relatives and clinicians regarding the characteristics of optimal adult autism assessment and diagnostic services. In stage 1, three key stakeholder groups were surveyed about experiences of adult autism diagnostic services (pre-assessment/assessment): 343 autistic adults, 45 relatives and 35 clinicians completed parallel surveys. Information from stage 1 surveys was used to devise statements for a modified Delphi process in stage 2 seeking consensus among clinicians on optimal diagnostic service characteristics. Data analyses were non-parametric and descriptive. Over half of adults were in contact with mental health services prior to autism diagnosis. Clinicians reported that multidisciplinary diagnostic teams lacked key professionals. Thirteen statements describing optimal autism diagnostic service provision were developed. There was consensus from clinicians on 11 statements relating to clear assessment pathways, updates for people while waiting, pre-assessment information gathering/provision, co-occurring condition identification and training/networking. Some autistic adults, relatives and clinicians were positive about services, all stakeholders identified improvements were needed. The findings describing optimal service provision are relevant for UK clinicians, managers and commissioners to improve diagnostic assessments for autistic adults, and have international relevance for similar health systems.Lay abstractLiving with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people’s experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide.
      Citation: Autism
      PubDate: 2022-02-16T08:54:09Z
      DOI: 10.1177/13623613211073020
       
  • Positive, negative, neutral—or unknown' The perceived valence of
           emotions expressed by young autistic children in a novel context suited to
           autism

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      Authors: Claudine Jacques, Valérie Courchesne, Suzanne Mineau, Michelle Dawson, Laurent Mottron
      Abstract: Autism, Ahead of Print.
      Starting early in life, autistics are characterized as having atypical facial expressions, as well as decreased positive and increased negative affect. The literature on autistic facial expressions remains small, however, with disparate methods and results suggesting limited understanding of common autistic emotions. Furthermore, unlike non-autistics’ emotions, autistics’ emotions have been assessed without considering this population’s characteristics. In this study, the valence of young children’s facial expressions was thus rated as positive, negative, neutral, or “unknown”—a term for perceived emotions observers do not understand. Facial expressions were assessed using the Montreal Stimulating Play Situation, a context incorporating potential autistic interests. Comparing 37 autistic and 39 typical young (27–56 months) age-matched children, we found no group differences in expressed positive, negative, and neutral emotions. We did find differences in unknown emotions, which were unique to the autistic group. Preliminary data also showed that autistic children’s repetitive behaviors co-occurred with positive, neutral, and unknown emotions, but not with negative emotions. In a novel context that considers their characteristics, we did not find decreased positive or increased negative emotions in young autistic children. Instead, they uniquely expressed emotions perceived as unknown, showing the need to improve our understanding of their full emotional repertoire.Lay abstractAutistic people are believed to have emotions that are too negative and not positive enough, starting early in life. Their facial expressions are also persistently judged to be unusual, as reflected in criteria used to identify autism. But it is possible that common autistic facial expressions are poorly understood by observers, as suggested by a range of findings from research. Another issue is that autistic emotions have always been assessed in contexts suited to non-autistics. In our study, the facial expressions of young autistic and typical children were rated as positive, negative, neutral, or “unknown”—a category we created for emotions that observers notice but do not understand. These emotions were assessed using a context suited to autistic children, including objects of potential interest to them. We found that in this context, autistic and typical children did not differ in positive, negative, or neutral facial emotions. They did differ in unknown emotions, which were found only in autistic children. We also found that repetitive behaviors in autistic children co-occurred with positive, neutral, and unknown emotions, but not with negative emotions. In a context which suits their characteristics, autistic children do not show emotions that are too negative or not positive enough. They do show emotions perceived as unknown, which means we need to improve our understanding of their full emotional repertoire.
      Citation: Autism
      PubDate: 2022-02-16T08:50:13Z
      DOI: 10.1177/13623613211068221
       
  • Autistic mothers’ perinatal well-being and parenting styles

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      Authors: Sarah Hampton, Carrie Allison, Ezra Aydin, Simon Baron-Cohen, Rosemary Holt
      Abstract: Autism, Ahead of Print.
      Autistic people may be at higher risk of perinatal mental health conditions, given that autism and mental health conditions commonly co-occur and that autistic people face additional stressors such as barriers to appropriate maternity care. This study explored self-reported stress, depression, anxiety and satisfaction with life during the third trimester of pregnancy (n = 27 autistic women; n = 25 non-autistic women), 2 to 3 months after birth (n = 24 autistic women; n = 26 non-autistic women) and 6 months after birth (n = 22 autistic women; n = 29 non-autistic women). Self-reported parenting confidence and parenting styles were explored at 6 months after birth. Autistic participants scored significantly higher than non-autistic participants on stress, depression and anxiety across the time-points as a whole, although there were no group differences for satisfaction with life. Anxiety scores significantly decreased over time for both groups. No group differences were found for parenting confidence nor parenting anxiety, nurturance, involvement or routine, although the autistic group scored lower on parenting discipline. The findings highlight the need for effective screening and support for perinatal mental health conditions for autistic people. Professionals working with autistic parents should be aware that autistic and non-autistic parents report being equally likely to engage in positive parenting behaviours such as nurturance and involvement.Lay abstractAutistic people can have difficulties during pregnancy and after giving birth, such as difficulty getting health care that meets their needs. Autistic people may therefore have lower well-being than non-autistic people during this time. We asked autistic and non-autistic people to fill in questionnaires measuring stress, depression, anxiety and satisfaction with life. They were asked to do this once during pregnancy, once 2 to 3 months after giving birth and once 6 months after giving birth. At 6 months after giving birth, they also filled in questionnaires about parenting. The autistic parents had higher stress, depression and anxiety scores than the non-autistic parents. For both groups, scores for anxiety went down over time. There were no differences between the groups on satisfaction with their life or how confident they were as a parent. There were no differences between the groups on most areas of parenting style, although autistic parents scored lower on parenting discipline. This study suggests that autistic people may be more stressed, depressed and anxious than non-autistic people during pregnancy and after giving birth. Autistic people therefore need good quality support during this time. This study also suggests that autistic and non-autistic parents may be just as likely to parent in positive ways such as being sensitive to their baby’s needs.
      Citation: Autism
      PubDate: 2022-02-02T05:26:43Z
      DOI: 10.1177/13623613211065544
       
  • Mental health screening in pediatric primary care for children with autism

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      Authors: Nicole A Stadnick, Kassandra Martinez, Karen J Coleman, Daniel P Gizzo, Elizabeth Lane, Nicholas Lee, Cynthia L Kuelbs, Gregory A Aarons, Lauren Brookman-Frazee
      Abstract: Autism, Ahead of Print.
      To report mental health screening rates in pediatric primary care as part of a larger program piloting Access to Tailored Autism INtegrated Care, a model promoting timely identification of mental health needs and care linkage for children with autism. Data were extracted from the Access to Tailored Autism INtegrated Care pilot in six pediatrics clinics within two organizations. Demographics and Pediatric Symptom Checklist-17 data were collected during well-child visit appointments over 4 months for 166 children with autism ages 4–16 years. 53% (n = 43) of 81 eligible children were screened in Organization 1 and 55% (n = 47) of 85 of eligible children were screened in Organization 2. In Organization 1, 47% screened positive, as evidenced by an elevated Pediatric Symptom Checklist-17 Total Score, while 36% screened positive in Organization 2. Children with positive screens had elevations on the Pediatric Symptom Checklist-17 Externalizing and Attention subscales but not on the Internalizing subscale, confirming typical trends in co-occurring challenging behavior presentations in children with autism. Slightly over half of eligible patients were Pediatric Symptom Checklist-17 screened. Positive screening rates were high, reinforcing the co-occurring nature of mental health needs in children with autism. Findings suggest opportunities to improve mental health screening in primary care for children with autism.Lay abstractChildren with autism experience high rates of co-occurring mental health conditions like challenging behaviors and anxiety. However, these co-occurring mental health needs are often not identified when they first become problematic. Pediatricians and their care staff are in a good position to identify mental health needs early and support families to connect to needed services. This study describes a project focused on mental health screening for children with autism in pediatric primary care clinics. Over half of eligible patients were screened using the Pediatric Symptom Checklist-17. Many children with autism had clinically elevated scores, suggesting the need for mental health assessment or services. In particular, children with positive screens had clinical elevations on the challenging behavior and attention subscales of the Pediatric Symptom Checklist-17. This finding is consistent with typical trends in co-occurring challenging behavior presentations in children with autism. Mental health screening in primary care is feasible and offers a promising opportunity to identify co-occurring mental health needs for children with autism early. Screening rates varied between clinics, suggesting tailored to improve routine screening in pediatric primary care for children with autism.
      Citation: Autism
      PubDate: 2022-02-02T05:23:30Z
      DOI: 10.1177/13623613211062963
       
  • Bilingualism effects on cognition in autistic children are not
           all-or-nothing: The role of socioeconomic status in intellectual skills in
           bilingual autistic children

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      Authors: Eleni Peristeri, Silvia Silleresi, Ianthi Maria Tsimpli
      Abstract: Autism, Ahead of Print.
      Children with autism often display discrepancies in their intellectual functioning, with nonverbal skills frequently being more developed than verbal. Compared to monolingual autistic children, however, much less is known about how bilingualism affects intelligence in autism. The current study examined the intelligence profiles of 146 bilingual and 170 age- and gender-matched monolingual children with autism (6–17 years) using the Wechsler Intelligence Scales for Children-Third Edition, by tracking cluster profiles across children and by modeling verbal and nonverbal IQ performance in each cluster as a function of language experience (monolinguals vs bilinguals), socioeconomic status, and age. The results reveal that socioeconomic status, operationalized as mother’s years of education, mediated by bilingualism was strongly related to autistic children’s intelligence. Low-socioeconomic status bilingual autistic children exhibited better performance than their monolingual peers across both the verbal and nonverbal intelligence subtests. However, the difference found in the intelligence profiles between monolinguals and bilinguals belonging to high-socioeconomic status was limited to the Comprehension Wechsler Intelligence Scales for Children test, with high-socioeconomic status monolingual autistic children outperforming their bilingual peers. The findings highlight the importance of investigating bilingualism effects in relation to socioeconomic status in autism.Lay abstractPrevious research has suggested that bilingualism may improve cognition in children with autism, and that this boost may stem from improvement in executive functions. The Wechsler Intelligence Scales for Children are considered to be reliable and valid measures of intelligence when administered to autistic children. These measures have so far revealed unusual psychometric properties in monolingual autistic children, notably distinctive patterns of strengths and weaknesses and low inter-correlation among verbal and nonverbal IQ subtests. The way bilingualism affects the intellectual functioning of autistic children has not been explored yet. Nor has there been a satisfactory factor structure that explains monolingual and bilingual autistic children’s IQ performance in terms of individual factors, such as age and socioeconomic status. The current study examined the intelligence profiles of 316 bilingual and age- and gender-matched monolingual children with autism using the Wechsler Intelligence Scales for Children–Third Edition. The study applied clustering models to extract intelligence subtypes of autism, and mediation analyses to examine potential mediation effects of age and socioeconomic status on the children’s verbal and nonverbal IQ performance. The results support the mediational role of the children’s socioeconomic status in the association between bilingualism and intelligence. Low-socioeconomic status bilingual autistic children outperformed their monolingual peers on both verbal and nonverbal subtests, while the differences faded in medium-socioeconomic status and high-socioeconomic status children. The findings emphasize the positive effects of bilingualism on low-socioeconomic status autistic children’s intelligence and also highlight high-socioeconomic status as a factor that may mitigate discrepant patterns of strengths and weaknesses in monolingual children’s IQ performance.
      Citation: Autism
      PubDate: 2022-02-01T12:40:48Z
      DOI: 10.1177/13623613221075097
       
  • Parent peer coaching program: A cascading intervention for parents of
           children with autism in Mongolia

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      Authors: James D Lee, Hedda Meadan, Enkhjin Oyunbaatar
      Abstract: Autism, Ahead of Print.
      Parents of children with autism in low-resource settings have reported exacerbated difficulties related to raising their children. In this single-case research using multiple probe design, four parent mentors and five parent peers and their children with autism in Mongolia participated in the parent peer coaching program. The intervention package, including training and coaching in evidence-based practices, was delivered via telepractice. Parent mentors completed online training and were coached by a bilingual and bicultural research assistant in a staggered fashion. Visual analysis revealed a functional relation between the intervention package and the coaching fidelity of parent mentors. Social validity data indicated that all participants were satisfied with the program and reported it was acceptable, feasible, and effective. Implications for conducting intervention research in a low-resource setting are described.Lay abstractParents of children with autism are known to experience severe hardships related to raising their children. These hardships are exacerbated in low-resource settings internationally where there is very little resource for children and their families, including professionals who provide evidence-based treatment. Mongolia was chosen as an example of such low-resource settings in this single-case research, and four parent mentors and five parent peers and their children with autism participated and completed the study. A local parent group, the Autism Association of Mongolia, was actively involved in this study and helped with recruitment, development, adaptation, and implementation of the intervention to increase acceptability and feasibility. In addition, a local bilingual research assistant was also utilized as the purpose of this study was to build capacity of diverse stakeholders of children with autism in Mongolia. The research assistant was trained and coached by the research team on both content (communication teaching strategies and behavior management) and delivery (coaching adults), who then provided coaching to parent mentors via live videoconferencing in Mongolian. Parent mentors then similarly provided coaching to parent peers after observing the interactions with their children with autism. The findings suggest that parents can effectively deliver high-fidelity coaching to disseminate evidence-based treatment in low-resource settings when given proper training and coaching. Further examination on scalability and sustainment of effects is suggested.
      Citation: Autism
      PubDate: 2022-01-27T10:39:06Z
      DOI: 10.1177/13623613211070636
       
  • Implementation outcomes from a pilot of “Access to Tailored Autism
           Integrated Care” for children with autism and mental health needs

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      Authors: Nicole A Stadnick, Gregory A Aarons, Kassandra Martinez, Marisa Sklar, Karen J Coleman, Daniel P Gizzo, Elizabeth Lane, Cynthia L Kuelbs, Lauren Brookman-Frazee
      Abstract: Autism, Ahead of Print.
      The objective of the study is to report the feasibility, acceptability, and adoption of the “Access to Tailored Autism Integrated Care (ATTAIN),” a model to identify mental health needs and link to mental health care for autistic children. The Exploration, Preparation, Implementation, and Sustainment framework informed implementation outcome measurement and analysis. Thirty-six providers from seven pediatric primary care clinics within three health care systems enrolled and received an initial Access to Tailored Autism Integrated Care training and ongoing online support over 4 months with autistic patients ages 4–16 years old. Survey and interview assessments measured perceptions of feasibility, acceptability, and intentions to sustain Access to Tailored Autism Integrated Care use. Electronic health record (EHR) data assessed child characteristics and Access to Tailored Autism Integrated Care adoption. Descriptive statistics and one-way analyses of variance characterized implementation outcomes and differences between health care systems. Rapid qualitative methods were used to analyze interview data that were integrated with survey data for convergence and expansion. Providers reported that Access to Tailored Autism Integrated Care was feasible, acceptable, and that the initial training was helpful. Reports were mixed about providers’ intentions to continue using Access to Tailored Autism Integrated Care. Providers offered recommendations for more specific and tailored implementation support. There were significant differences in provider-reported adoption rates between health care systems. This is one of the first implementation studies examining integrated mental health care for autistic children and highlighted specific areas for refinement to facilitate scale-up.Lay abstractChildren with autism frequently experience co-occurring mental health needs. The “Access to Tailored Autism Integrated Care (ATTAIN)” model was co-created with caregivers, pediatric providers, and health care leaders to identify mental health needs and link to mental health care for autistic children. This article describes outcomes from a pilot study of Access to Tailored Autism Integrated Care with 36 pediatric primary care providers from seven clinics within three healthcare systems. Providers participated in an initial Access to Tailored Autism Integrated Care training and received ongoing online support over 4 months with autistic patients ages 4–16 years old. Survey and interview assessments measured provider perceptions of feasibility, acceptability, and intentions to continue using Access to Tailored Autism Integrated Care after the pilot. Providers reported that Access to Tailored Autism Integrated Care was feasible, acceptable, that the initial training was helpful in their implementation but that more specific and tailored implementation support was needed. Results show that Access to Tailored Autism Integrated Care is a promising model to support mental health screening and linkage for children with autism in primary care. Findings provide information on specific areas of the Access to Tailored Autism Integrated Care model that could be benefit from additional refinement to support more widespread use in primary care settings.
      Citation: Autism
      PubDate: 2022-01-27T10:35:07Z
      DOI: 10.1177/13623613211065801
       
  • The impact of early stages of COVID-19 on the mental health of autistic
           adults in the United Kingdom: A longitudinal mixed-methods study

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      Authors: Rebecca Bundy, Will Mandy, Laura Crane, Hannah Belcher, Laura Bourne, Janina Brede, Laura Hull, Jana Brinkert, Julia Cook
      Abstract: Autism, Ahead of Print.
      We used mixed methods to learn about the nature and drivers of mental health changes among autistic adults in the United Kingdom during the early stages of the COVID-19 pandemic. In quantitative analyses, we examined the nature and predictors of change in depression, anxiety and stress, prospectively measured in 70 autistic adults at Wave 1 (just before the United Kingdom’s first lockdown) and Wave 2 (10–15 weeks into the United Kingdom’s first lockdown). Retrospective Wave 2 reports of mental health change were also analysed for these 70 participants. For the qualitative analysis, 133 participants (including the 70 from the quantitative analyses) provided reports on their experiences of the pandemic at Wave 2. In quantitative analyses, retrospective reports indicated that participants’ mental health worsened, but prospective data showed a different picture, with overall anxiety and stress scores reducing between Waves 1 and 2. Nevertheless, the mental health impact of the pandemic on autistic adults was variable, with a sizable minority reporting a significant decline in mental health. Qualitative analysis yielded four themes that contributed to mental health changes: (a) adjusting to changes to the social world, (b) living with uncertainty, (c) disruptions to self-regulation, and (d) barriers to fulfilling basic needs.Lay abstractDuring the COVID-19 pandemic, high levels of depression, anxiety and stress have been reported in the general population. However, much less has been reported about the impact of COVID-19 on the mental health of autistic people. What we did: In the present study, we investigated how the mental health of autistic adults in the United Kingdom changed during the early stages of the COVID-19 pandemic. In total, 133 participants completed an online survey at two different time points. Of the 133 participants, 70 completed the survey at the first time point just before the onset of the national lockdown. This allowed us to look at changes in their mental health, from before the lockdown to 10 to 15 weeks during lockdown. All participants (133) told us about their experiences of the pandemic. What we found: While many autistic adults told us that their mental health worsened, people’s experience varied. For some autistic adults, aspects of mental health (e.g. anxiety, stress) actually improved. Participants also described social changes that had occurred, at home and in the outside world. They described feelings of uncertainty during the pandemic, and discussed how the pandemic had affected some of their previous coping strategies. Participants also told us about their difficulties in accessing healthcare services and food during the early stages of the pandemic. In our article, we discuss these findings and focus on what needs to change to ensure that autistic people are better supported as the pandemic continues.
      Citation: Autism
      PubDate: 2022-01-27T10:33:27Z
      DOI: 10.1177/13623613211065543
       
  • Effects of exercise on sleep, melatonin level, and behavioral functioning
           in children with autism

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      Authors: Andy CY Tse, Paul H Lee, Jihui Zhang, Roy CY Chan, Amy WY Ho, Elvis WH Lai
      Abstract: Autism, Ahead of Print.
      Poor sleep quality and low behavioral functioning are commonly reported in children with autism spectrum disorder. This study examined the impact of exercise on sleep on melatonin level and behavioral functioning in the population. Children with autism spectrum disorder(n = 55; age = 10.97 ± 1.90) were randomly allocated to a morning jogging intervention group or a control group. Participants’ sleep was measured using actigraphy and sleep log assessments. Twenty-four-hour and first morning urinary 6-sulfatoxymelatonin were used to determine whether the exercise intervention could elicit changes in melatonin levels. Behavioral functioning of the participants was assessed by the repetitive subscale of the Gilliam Autism Rating Scale–3rd edition. All assessments were carried out in baseline, post-intervention, or regular treatment, and follow-up to elucidate the sustainability of the exercise effects. Positive changes were observed between baseline and post-intervention in actigraphy-assessed sleep efficiency and wake after sleep onset, as well as melatonin level and behavioral functioning within the intervention group (ps  0.05). The findings suggest that physical exercise is effective to improve sleep with an increase in melatonin level. It can also reduce repetitive behaviors in children with autism spectrum disorder.Lay abstractThis study examined the impact of physical exercise on sleep and behavioral functioning in children (aged 8–12 years) with autism spectrum disorders. It also investigated whether exercise would alter endogenous melatonin level among the population. Participants were divided into two groups: exercise group (12–week, 30-min morning jogging intervention) and a control group (i.e. did not receive any physical exercise intervention during the study period). Significant improvements on sleep and behavioral functioning were found in the exercise group, but not in the control group Moreover, a significant increase in melatonin level was also shown in the exercise group. Findings of this study reconfirmed the sleep and behavioral benefits of exercise in children with autism spectrum disorder. Melatonin-mediated mechanism should be further explored to develop an effective treatment intervention.
      Citation: Autism
      PubDate: 2022-01-27T10:18:42Z
      DOI: 10.1177/13623613211062952
       
  • A virtuous circle: Stakeholder perspectives of a short-term intensive
           parent training programme delivered within the context of routine services
           for autism in China

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      Authors: Zuyi Fang, Jamie M Lachman, Cheng Zhang, Dongping Qiao, Jane Barlow
      Abstract: Autism, Ahead of Print.
      Although the evidence of parent training programmes for families of autistic children has continued to grow, little is known about the experiences and perceptions of key stakeholders, especially in low- and middle-income countries. This qualitative study was part of a larger real-world evaluation of a short-term intensive parent training programme in routine services delivered to caregivers of autistic children aged 3–6 years in China. It aimed to provide insights into programme acceptability, reasons for participant involvement, and factors related to programme implementation. Fourteen caregivers participated in the in-depth interviews, and two focus group discussions were conducted with eight practitioners. Data were analysed using a combination of data- and theory-driven approaches. Findings point to the needs in low autism resource settings for substantial practice and feedback; group support; individualised coaching; more autism-related knowledge, resources and activities for children and extended family members; and organisational support to practitioners. Further research is suggested to address the recommendations and assess their effectiveness empirically.Lay abstractWhile much knowledge about autism derives from high-income countries, most people diagnosed with autism reside in low- and middle-income countries, where little is documented in terms of local interventions. This is also true for parent training programmes for families of autistic children. An evaluation was conducted to understand the effects of a short-term intensive parent training programme delivered in routine services for families of autistic children in China. This study reported results from the in-depth interviews with 14 participating caregivers and group discussions with eight group leaders. The interviews and discussions were aimed at learning (1) to what extent the programme components were deemed acceptable, (2) what affected caregivers’ attendance and engagement in the programme and (3) what affected group leaders’ delivery of the programme. Findings suggested that future parent training programmes provide adequate opportunities for caregivers to practice and receive feedback; group support; coaching experience tailored to individual challenges; more autism-related knowledge, resources and activities for children and extended family members; and organisational support to group leaders. This study highlights the value of qualitative research and points to the need for more empirical studies to address the recommendations, so that research findings can be better utilised to promote practices.
      Citation: Autism
      PubDate: 2022-01-24T12:13:46Z
      DOI: 10.1177/13623613211070869
       
  • Exploring potential sources of childhood trauma: A qualitative study with
           autistic adults and caregivers

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      Authors: Connor M Kerns, Stephen Lankenau, Paul T Shattuck, Diana L Robins, Craig J Newschaffer, Steven J Berkowitz
      Abstract: Autism, Ahead of Print.
      The stressors autistic individuals encounter and experience as traumatic may vary from non-autistics. We conducted a qualitative study to identify potential sources of trauma for autistic individuals and evaluate correspondence with a standard measure. We enrolled autistic adults (N = 14) and caregivers (N= 15) with varied adversities, levels of functioning, and socio-demographics. Participants completed standard measures of autism, traumatic exposures and stress, and qualitative interviews, which were submitted to thematic analysis. A wide range of experiences were described as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and caregivers described sources of trauma in interviews not captured by standardized measures. Varied stressful experiences, many not detected by a standardized measure, may have a traumatic effect on autistic individuals. Whereas some reflect commonly recognized trauma sources, others may reflect particular vulnerabilities for autistic individuals. Results have implications for assessing traumatic events and understanding their contribution to mental health inequities in the autistic population.Lay abstractThe stressors autistic individuals encounter and experience as traumatic may vary from those not on the spectrum and typically measured. We conducted in-depth interviews with autistic adults and caregivers of children and adults on the spectrum to identify potential sources of trauma for autistic individuals and evaluate the ability of a standard trauma measure to capture those experiences. Fourteen autistic adults and 15 caregivers with varied backgrounds, clinical profiles, and histories of adversity were interviewed. Participants also completed standard measures of autism, traumatic exposures, and stress. Interviews were analyzed to record both traditional sources of trauma, for comparison with the standard measure, and distinct sources, described as traumatic only in the narratives of participants. Participants described varied experiences as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and most caregivers described sources of trauma in interviews not reported on the standard measure. Results have implications for assessing traumatic events in autism and for understanding their contribution to the mental health of this group.
      Citation: Autism
      PubDate: 2022-01-24T12:11:46Z
      DOI: 10.1177/13623613211070637
       
  • Policy gaps and opportunities: A systematic review of autism spectrum
           disorder and criminal justice intersections

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      Authors: Dylan S Cooper, Disha Uppal, Kirsten S Railey, Amy Blank Wilson, Katie Maras, Emily Zimmerman, Juan Bornman, Lindsay L Shea
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder prevalence is rising, and as this population enters adulthood, preliminary research has identified high rates of contact with the criminal justice system. Policy and programmatic reform are crucial given reported negative and violent outcomes for autistic individuals when encountering the criminal justice system. Given the size and scope of the entire criminal justice system, identifying priorities and opportunities for change is critical, and must be rooted in evidence-based findings to maximize impact and scalability. This article provides a systematic review of the literature on autism spectrum disorder and criminal justice system intersections, analyzed through a convergent qualitative synthesis. As the extant literature is diverse and employs a variety of study methods, this review allows for an analysis across study types. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis structure was utilized and captured 89 total articles from six databases. Studies are grouped by the Sequential Intercept Model, which offers a framework for analyzing criminal justice system dimensions, and informs where research at the intersection of autism spectrum disorder and the criminal justice system is most prevalent. Themes were identified at each intercept and described through key study findings to articulate implications and guidance for policy, practice, and future research to promote equitable justice for autistic individuals.Lay abstractThe number of people with autism spectrum disorder has increased, and as this population ages, research is showing high rates of contact with the criminal justice system among this group. Social and communication differences that autistic individuals experience can act as a risk factor during these interactions, as shown by public reports of negative and violent encounters between autistic individuals and the law enforcement. There is a clear need for evidence-based strategies to reduce high rates of contact and to improve outcomes when an interaction occurs. This article provides a systematic review of research on autism spectrum disorder and criminal justice system to compile this evidence base. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis structure was used to identify 89 articles after searching six databases. The Sequential Intercept Model describes the criminal justice system as different stages, or intercepts, that are connected, and the Sequential Intercept Model serves as an overall framework to organize the included articles. Articles were analyzed to identify research themes at each intercept, which offer guidance for policy and program changes that support equitable justice for autistic individuals.
      Citation: Autism
      PubDate: 2022-01-24T12:10:06Z
      DOI: 10.1177/13623613211070341
       
  • Friendship quality among autistic and non-autistic (pre-) adolescents:
           Protective or risk factor for mental health'

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      Authors: Rachel A.G. O’Connor, Neeltje van den Bedem, Els M.A. Blijd-Hoogewys, Lex Stockmann, Carolien Rieffe
      Abstract: Autism, Ahead of Print.
      Autistic (pre-) adolescents are often misunderstood by their peers, which can lead to challenges within their friendships. Yet, friendships play an important role in our psychological wellbeing, whereby in the non-autistic population good quality friendships usually protect against mental health difficulties, whereas conflictual friendships increase the risk. The present study investigated positive and negative friendship quality in autistic and non-autistic (pre-) adolescents. Furthermore, the relations between positive friendship quality and negative friendship quality with anxiety and depressive symptoms were examined. Participants were 306 autistic and non-autistic (pre-) adolescents aged 9–16 (M = 11.69 years; SD = 1.33 years). Our results demonstrated that autistic (pre-) adolescents reported lower positive friendship quality than their non-autistic peers, while no group or gender differences were observed for negative friendship quality than non-autistic boys. For the whole sample, positive friendship quality was associated with fewer depressive symptoms, while the opposite was true for negative friendship quality. For autistic girls only, higher positive friendship quality was related to more symptoms of anxiety. These outcomes seem to emphasize the need for supporting the friendships of autistic young people, perhaps by educating non-autistic young people around how to be supportive friends to their autistic peers.Lay abstractAutistic young people are often misunderstood by non-autistic young people, and this can lead to difficulties in their friendships. We know that friendship is very important for our mental health. For non-autistic young people, having good friendships is linked to better mental health and having problems in friendship can cause mental health problems. This study aimed to compare the positive and negative features of friendship that autistic non-autistic young people experience. The study also aimed to understand if having positive or negative friendship features is related to signs of mental health problems (anxiety and depression). 306 young people aged 9–16 took part in this study. These were 86 autistic boys, 18 autistic girls, 91 non-autistic boys and 111 non-autistic girls. The findings of this study showed that autistic young people have less positive friendship features than non-autistic young people. For all young people in the study, having more positive friendship features was related to fewer signs of depression, while having more negative friendship features was related to more signs of depression. Just for autistic girls, having more positive friendship features was related to more signs of anxiety. These findings show that support is needed to help autistic young people have more positive friendships. For example, by teaching non-autistic young people how to be supportive friends to their autistic peers.
      Citation: Autism
      PubDate: 2022-01-22T10:11:32Z
      DOI: 10.1177/13623613211073448
       
  • Patterns in reporting and participant inclusion related to race and
           ethnicity in autism intervention literature: Data from a large-scale
           systematic review of evidence-based practices

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      Authors: Jessica R Steinbrenner, Nancy McIntyre, Lindsay F Rentschler, Jamie N Pearson, Paul Luelmo, Maria Elizabeth Jaramillo, Brian A Boyd, Connie Wong, Sallie W Nowell, Samuel L Odom, Kara A Hume
      Abstract: Autism, Ahead of Print.
      There are marked racial and ethnic disparities in diagnosis and services for individuals on the autism spectrum, yet race and ethnicity are underreported and underexamined in autism research. The current study examines the reporting of race and ethnicity and the inclusion of participants across racial and ethnic groups in studies included in a large-scale systematic review of autism intervention research (1990–2017). Trained research assistants reviewed 1013 articles and extracted data on the reporting of race and ethnicity data and the inclusion of participants from different racial and ethnic categories from each article. Only 25% of the articles reported any data on race and ethnicity and reporting over time has slowly increased across the 28 years of the review. Descriptive statistics suggest that race and ethnicity reporting varied by study design, intervention, and outcomes. In studies with reported data, White participants had the highest rate of participation (64.8%), with a large gap between the next highest rates of participation, which were among Hispanic/Latino (9.4%), Black (7.7%), and Asian (6.4%) participants. The lack of reporting and the limited inclusion of participants across minoritized racial and ethnic groups are concerning and suggest a need to examine practices in autism research from planning to dissemination.Lay AbstractResearchers who study autism-related interventions do a poor job reporting data related to the race and ethnicity of autistic individuals who participate in their studies, and of those who do report these data, the participants are overwhelmingly White. This is problematic for many reasons, as we know little about how interventions are meeting the needs of culturally and linguistically diverse populations, and we assume that interventions are effective for all when they have been developed and validated primarily with and for White children. This study examined the reporting patterns of autism intervention researchers whose work was included in a large-scale systematic review of the intervention literature published between 1990 and 2017. We found that only 25% of studies (out of 1,013 included in the review) included data related to the race and ethnicity of their participants, with minimal change in reporting patterns across the years. In studies with reported data, White participants had the highest rate of participation, with a large gap between the next highest rates of participation among Hispanic/Latino, Black, and Asian participants. Other race and ethnicity groups had very low representation. This study includes additional analyses which examine how the reporting patterns and the inclusion of racially and ethnically diverse participants varies across study types, interventions, and outcome areas. Reporting this data is merely a starting point to begin to address the many disparities in autism-related healthcare, education, and research practices, and this article includes broader implications and next steps to ensure the field becomes more equitable and inclusive.
      Citation: Autism
      PubDate: 2022-01-22T10:04:06Z
      DOI: 10.1177/13623613211072593
       
  • Who’s waiting for a school' Rates, socio-demographics, disability
           and referral profile of children with autism spectrum disorder awaiting
           school placement in the Western Cape Province of South Africa

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      Authors: Sarosha Pillay, Madeleine Duncan, Petrus J de Vries
      Abstract: Autism, Ahead of Print.
      In this study, we examined the demographic, disability, referral and service needs profile of children with autism spectrum disorder waiting for school placement in the Western Cape Province of South Africa and combined our findings with those of a previous study on children with autism spectrum disorder attending schools in the province over the same period of time. In June 2016, there were 744 children with autism spectrum disorder or suspected autism spectrum disorder waiting for an appropriate school placement, 478 children were pre-school age and 266 children were school-going age. Fifty-three percent (53%) of pre-school age children and 38% of school-going age children were reported to be at home and receiving no educational or other intervention while they waited for a school. More than half the children on the waiting list had been waiting for services for more than a year. The combined data on children with autism spectrum disorder in school and waiting for schools showed a total of 1684 known children with autism spectrum disorder in the Western Cape in June 2016, representing less than 0.1% of the childhood population in the province. The results highlight the need for education systems strengthening to accommodate all children with autism spectrum disorder in appropriate educational settings from as early as possible. We propose multi-stakeholder engagement to develop contextually appropriate policies, best practice guidelines and actions for the education of children with autism spectrum disorder in South Africa.Lay abstractIn South Africa, there are limited educational opportunities for children with autism spectrum disorder and many children with autism spectrum disorder have to wait for school placement. This study examined the education waiting list for children with autism spectrum disorder in the Western Cape Province of South Africa and reported on the demographic, disability, referral and service provision characteristics of these children. In June 2016, there were 744 children with definite autism spectrum disorder or possible autism spectrum disorder between the ages of 1 and 17 years waiting for school placement. There were children of compulsory school-going age who were reported to be at home and not receiving any intervention while they waited. More than half the children on the waiting list had been waiting for more than a year. We then combined the findings of this study with the findings of a previous study on children with autism spectrum disorder already attending schools in the province over the same period of time. We found a total of 1684 children known to have autism spectrum disorder – this was less than 0.1% of all young people in the province at the time. Between 2012 and 2016, there was a 276% increase in the number of children with autism spectrum disorder waiting for schools in the Western Cape. The results show that education systems in the Western Cape need to be strengthened to accommodate all children with autism spectrum disorder in appropriate education settings from as early as possible. We recommend engaging with different stakeholders to develop policies, best practice guidelines and actions for autism spectrum disorder education in South Africa.
      Citation: Autism
      PubDate: 2022-01-21T07:59:19Z
      DOI: 10.1177/13623613211067324
       
  • Alternative receptive language assessment modalities and stimuli for
           autistic children who are minimally verbal

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      Authors: Kristen Muller, Nancy C Brady, Kandace K Fleming
      Abstract: Autism, Ahead of Print.
      The primary aim of this study was to evaluate and compare alternative modalities and stimuli used to measure receptive vocabulary skills in autistic children who are minimally verbal. This study systematically compared participants’ outcomes on three different receptive vocabulary assessment conditions: a low-tech assessment that used a stimulus book, a touchscreen assessment, and an assessment that used real-object stimuli. A secondary aim of this study was to examine how individual characteristics such as nonverbal cognition, maladaptive behavior, and autism symptomology impact performance on assessment conditions. Participants were 27 autistic students between the ages of 3 and 12 who had minimal verbal skills. Participants responded to 12 items in 3 assessment conditions (972 total items). Results from a crossed random effects model showed that participants’ scores in the real-object assessment condition were significantly higher than in the low-tech book condition and marginally higher than scores in the touchscreen assessment condition. Nonverbal cognition accounted for 44% of the variance in participants’ scores.Lay abstractIt is difficult to measure language comprehension abilities in autistic children who have limited expressive language skills. Results from available assessments may underestimate autistic children’s receptive language skills. The primary purpose of this study was to compare alternative modalities and stimuli used to measure receptive vocabulary skills in autistic children who are minimally verbal. This study compared participants’ outcomes on three different receptive vocabulary assessment conditions: an assessment that used a low-tech stimulus book, a touchscreen assessment, and an assessment that used real-object stimuli. Twenty-seven students between the ages of 3 and 12 who had minimal verbal skills and a diagnosis of autism spectrum disorder participated in this study. Results showed that participants’ scores in the real-object assessment condition were significantly higher than in the low-tech condition and marginally higher than scores in the touchscreen condition. These results suggest real-object stimuli may provide a more robust measure of autistic children’s receptive vocabulary skills than traditional low-tech picture stimuli. Although many direct standardized assessments use picture stimuli to measure word understanding, when assessing autistic individuals who have limited expressive language, real objects can be used in replacement of, or in addition to, picture stimuli.
      Citation: Autism
      PubDate: 2022-01-19T09:07:10Z
      DOI: 10.1177/13623613211065225
       
  • Effectiveness of a parent-mediated intervention for toddlers with autism
           spectrum disorder: Evidence from a large community implementation

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      Authors: Jessica Brian, Irene Drmic, Caroline Roncadin, Erin Dowds, Chantelle Shaver, Isabel M Smith, Lonnie Zwaigenbaum, Lori-Ann R Sacrey, Susan E Bryson
      Abstract: Autism, Ahead of Print.
      Recent efforts have focused on developing and evaluating early intervention for toddlers with probable or emerging autism spectrum disorder. Parent-mediated approaches have gained traction, with mounting evidence of efficacy, but a research-to-practice gap exists, and community effectiveness remains to be firmly established. We report outcomes of a parent-mediated toddler intervention delivered through a research-community partnership, using a community-partnered participatory framework. Data were available for 179 of 183 toddler-parent dyads receiving Social ABCs parent coaching (mean toddler age: 25.18 months; range, 14–34 months). Of these, 89.4% completed the 12-week program and 70.6% returned for 3-month follow-up assessment. Parents attained implementation fidelity exceeding 75%, and toddlers made gains on proximal and distal measures of social communication. Parent fidelity was associated with toddlers’ responsivity at week 12, and responsivity predicted later language gains and reduced autism spectrum disorder symptoms. The roles of child, family, and system factors are discussed. Community delivery of an evidence-based parent-mediated intervention for toddlers with autism spectrum disorder is feasible and effective. Given resource efficiencies associated with parent-mediated approaches, findings bolster current efforts to promote earlier and more widespread access to intervention at the first signs of developmental concern.Lay abstractIn an effort to increase access to intervention as early as possible for toddlers with autism spectrum disorder or signs thereof, many researchers have developed interventions that can be delivered by parents in their own homes. These parent-mediated approaches have gained a lot of research attention in recent years and have been found to be helpful in terms of parent and toddler learning. Several studies have used a rigorous research design (a randomized controlled trial) to show that parent-mediated intervention can work under ideal well-controlled conditions. To build on this evidence, we also need to examine whether parent-mediated interventions can be taught well through community service providers and delivered in more “real-world” conditions. This study used a research-community partnership to provide a parent-mediated intervention (called the Social ABCs) to 179 families (mean toddler age was 25 months; ranging from 14 to 34 months). Almost 90% of the families completed the 12-week program and 70% returned for a follow-up assessment 3 months later. Analyses showed that parents learned the strategies that were designed to help them support their toddlers’ development. Also, toddlers made gains in their language, communication, and social skills. Importantly, parents’ use of the strategies was related to toddlers’ skill gains, suggesting that the use of the strategies made a difference for the toddlers. Findings support the use of parent-mediated intervention in this very young age group and suggest that such intervention approaches should be made available for community delivery.
      Citation: Autism
      PubDate: 2022-01-15T10:18:14Z
      DOI: 10.1177/13623613211068934
       
  • A prospective study of associations between early fearfulness and
           perceptual sensitivity and later restricted and repetitive behaviours in
           infants with typical and elevated likelihood of autism

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      Authors: Nisha Narvekar, Virginia Carter Leno, Greg Pasco, Mark H Johnson, Emily JH Jones, Tony Charman
      Abstract: Autism, Ahead of Print.
      Autism is diagnosed based on social and communication difficulties, restricted and repetitive behaviours and sensory anomalies. Existing evidence indicates that anxiety and atypical sensory features are associated with restricted and repetitive behaviours, but cannot clarify the order of emergence of these traits. This study uses data from a prospective longitudinal study of infants with and without a family history of autism (N = 247; Elevated Likelihood N = 170 and Typical Likelihood N = 77). Longitudinal cross-lag models tested bidirectional pathways between parent-rated infant fear/shyness and perceptual sensitivity at 8, 14 and 24 months, and associations between these domains and parent-rated restricted and repetitive behaviours and social communication scores at 36 months. In addition to within-domain continuity, higher levels of fear/shyness at 14 months were associated with higher levels of perceptual sensitivity at 24 months. Higher levels of both fear/shyness and perceptual sensitivity at 24 months were associated with greater restricted and repetitive behaviours and social communication scores at 36 months. Results demonstrate the directionality of developmental pathways between fear/shyness and perceptual sensitivity in infancy and toddlerhood, but question theories that argue that these domains specifically underlie restricted and repetitive behaviours rather than autism. Identifying how early emerging anxiety and sensory behaviours relate to later autism is important for understanding pathways and developing targeted support for autistic children.Lay abstractRestricted interests and repetitive behaviours are central to the diagnosis of autism and can have profound effects on daily activities and quality of life. These challenges are also linked to other co-occurring conditions such as anxiety and sensory sensitivities. Here, we looked at whether early emerging signs of anxiety and sensory problems appear before symptoms of autism by studying infants with a family history of autism, as these infants are more likely to develop autism themselves. Studying infant siblings provides an opportunity for researchers to focus on early developmental markers of autism as these infants can be followed from birth. This study found that early infant signs of anxiety (e.g. fear/shyness) predicted later perceptual sensitivity, and those infants who scored higher on fear/shyness and sensitivity were more likely to experience more persistent repetitive behaviours, but also social and communication difficulties in toddlerhood. Early signs of anxiety and perceptual sensitivity may thus relate to both later social difficulties and repetitive behaviours. These findings support the importance of further research exploring the causal links between these domains in relation to autism, resulting in increased understanding of children who go onto develop autism in the future and guiding early interventions and supports.
      Citation: Autism
      PubDate: 2022-01-13T08:47:06Z
      DOI: 10.1177/13623613211068932
       
  • Early life environmental factors associated with autism spectrum disorder
           symptoms in children at age 2 years: A birth cohort study

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      Authors: Cindy Pham, Christos Symeonides, Martin O’Hely, Peter D Sly, Luke D Knibbs, Sarah Thomson, Peter Vuillermin, Richard Saffery, Anne-Louise Ponsonby
      Abstract: Autism, Ahead of Print.
      Mounting evidence finds that early life environmental factors increased the probability of autism spectrum disorder. We estimated prospective associations between early life environmental factors and autism spectrum disorder symptoms in children at the age of 2 years in a population-derived birth cohort, the Barwon Infant Study. Autism spectrum disorder symptoms at the age of 2 years strongly predicted autism spectrum disorder diagnosis by the age of 4 years (area under curve = 0.93; 95% CI (0.82, 1.00)). After adjusting for child’s sex and age at the time of behavioural assessment, markers of socioeconomic disadvantage, such as lower household income and lone parental status; maternal health factors, including younger maternal age, maternal pre-pregnancy body mass index, higher gestational weight gain and prenatal maternal stress; prenatal alcohol; environmental air pollutant exposures, including particulate matter 
      Citation: Autism
      PubDate: 2022-01-11T09:06:03Z
      DOI: 10.1177/13623613211068223
       
  • Exposure to family stressful life events in autistic children:
           Longitudinal associations with mental health and the moderating role of
           cognitive flexibility

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      Authors: Virginia Carter Leno, Nicola Wright, Andrew Pickles, Rachael Bedford, Anat Zaidman-Zait, Connor Kerns, Pat Mirenda, Lonnie Zwaigenbaum, Eric Duku, Teresa Bennett, Stelios Georgiades, Isabel Smith, Tracy Vaillancourt, Peter Szatmari, Mayada Elsabbagh
      Abstract: Autism, Ahead of Print.
      Mental health problems are prevalent in autistic youth, but the underpinning mechanisms are not well explored. In neurotypical youth, stressful life events are an established risk factor for mental health problems. This study tested longitudinal bidirectional associations between family-level stressful life events and mental health problems and whether these were moderated by cognitive flexibility, in a cohort of autistic children (N = 247). Family-stressful life events, assessed using the parent-reported Family Inventory of Life Events and Changes, and mental health problems, assessed using the teacher-reported Child Behavior Checklist Internalizing and Externalizing Symptoms subscales, were measured at multiple points between 7 and 11 years. Analyses showed no significant pathways from internalizing or externalizing symptoms to family-stressful life events or from family-stressful life events to internalizing or externalizing symptoms. There was some evidence of moderation by cognitive flexibility; the family-stressful life events to internalizing symptoms pathway was non-significant in the group with typical shifting ability but significant in the group with clinically significant shifting problems. Information about family-level stressful life event exposure and cognitive flexibility may be helpful in identifying autistic youth who may be at higher risk of developing mental health problems. Established risk factors for mental health problems in neurotypical populations are relevant for understanding mental health in autistic youth.Lay abstractExperiencing stressful life events, such as a parent having had serious illness, parental divorce, bullying and victimization, is known to increase risk for mental health difficulties in neurotypical children. However, few studies have looked at whether stressful life events have a similar impact in autistic youth and if any individual characteristics may moderate the impact of said life events. In this study, we tested whether in autistic children aged 7–11 years, exposure to family-level stressful life events predicted later mental health symptoms (and vice versa). We also tested whether associations between stressful life events and mental health symptoms differed depending on the child’s level of cognitive flexibility. We found stressful life events only predicted internalizing symptoms (such as anxiety and depression) in children with clinically significant difficulties in cognitive flexibility (as rated by their parents). Mental health symptoms did not predict future exposure to stressful life events. Results suggest that information about exposure to stressful life events and cognitive inflexibility may be helpful in identifying autistic children who may be at risk of developing anxiety and depression symptoms.
      Citation: Autism
      PubDate: 2022-01-04T11:13:52Z
      DOI: 10.1177/13623613211061932
       
  • Sufficient sleep duration in autistic children and the role of physical
           activity

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      Authors: Stacey D Elkhatib Smidt, Nalaka Gooneratne, Edward S Brodkin, Maja Bucan, Jonathan A Mitchell
      First page: 814
      Abstract: Autism, Ahead of Print.
      Emerging evidence suggests that physical activity may be associated with improved sleep in autistic children. We aimed to determine whether physical activity associated with sufficient sleep duration in children and whether this association was modified by reported autism spectrum disorder (ASD) status. We analyzed existing data of children 6–17 years old whose caregivers completed the 2018 National Survey of Children’s Health (nonautistic N = 20,845; ASD N = 681). Logistic regression determined whether physical activity (days active in the past week) associated with sufficient sleep duration. Physical activity-by-ASD interactions were included to determine whether the association differed for autistic children. Physical activity-by-ASD-by-sex and physical activity-by-ASD-by-age-group interactions were also modeled. Physical activity was associated with increased odds of sufficient sleep duration (e.g. 0 days vs 4–6 days: odds ratio (OR) = 1.85; 95% confidence interval (CI): 1.48–2.32). We did not observe an overall statistically significant interaction between physical activity and reported ASD status; however, the positive association between physical activity and sufficient sleep duration was weaker in autistic children, especially those with more severe ASD, female autistic children, and autistic children ages 6–12 years old. In conclusion, physical activity is a promising approach to improve sufficient sleep duration but with nuanced findings in autistic children.Lay abstractHigher levels of physical activity may be associated with improved sleep in children, but this relationship is still being determined, especially in autistic children. In this study, we used existing data from the 2018 National Survey of Children’s Health. Caregivers of children 6–17 years old, including caregivers of autistic children, completed a questionnaire that included questions about physical activity (days active in the past week) and sleep duration. We then determined if children were obtaining the recommended hours of sleep for their age (i.e. sufficient sleep). We found that higher physical activity levels were associated with sufficient sleep duration, but this finding was weaker in autistic children. In particular, this association was not observed in autistic children with more severe autism spectrum disorder, female autistic children, and autistic children 6–12 years old. In conclusion, physical activity is a promising approach to help children obtain sufficient sleep duration. However, more personalized approaches to improving sleep may be needed for certain groups of autistic children.
      Citation: Autism
      PubDate: 2022-01-07T05:12:29Z
      DOI: 10.1177/13623613211053671
       
 
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