Subjects -> DISABILITY (Total: 100 journals)
Showing 1 - 200 of 310 Journals sorted alphabetically
Advances in Human Factors/Ergonomics     Full-text available via subscription   (Followers: 26)
Aequitas : Revue de Développement Humain, Handicap et Changement Social     Full-text available via subscription   (Followers: 10)
African Journal of Disability     Open Access   (Followers: 8)
Ageing & Society     Hybrid Journal   (Followers: 47)
ALTER - European Journal of Disability Research / Revue Européenne de Recherche sur le Handicap     Full-text available via subscription   (Followers: 13)
American Annals of the Deaf     Full-text available via subscription   (Followers: 19)
American Journal of Speech-Language Pathology     Full-text available via subscription   (Followers: 56)
American Journal on Intellectual and Developmental Disabilities     Full-text available via subscription   (Followers: 65)
Aphasiology     Hybrid Journal   (Followers: 61)
Assistive Technology: The Official Journal of RESNA     Hybrid Journal   (Followers: 22)
Audiology     Open Access   (Followers: 12)
Audiology - Communication Research     Open Access   (Followers: 11)
Audiology Research     Open Access   (Followers: 9)
Augmentative and Alternative Communication     Hybrid Journal   (Followers: 50)
Autism     Hybrid Journal   (Followers: 347)
Autism & Developmental Language Impairments     Open Access   (Followers: 16)
Autism in Adulthood     Hybrid Journal   (Followers: 9)
Autism Research     Hybrid Journal   (Followers: 56)
Autism's Own     Open Access   (Followers: 9)
British Journal of Learning Disabilities     Hybrid Journal   (Followers: 100)
British Journal of Special Education     Hybrid Journal   (Followers: 53)
British Journal of Visual Impairment     Hybrid Journal   (Followers: 14)
Canadian Journal of Disability Studies     Open Access   (Followers: 36)
Deafness & Education International     Hybrid Journal   (Followers: 6)
Developmental Disabilities Research Reviews     Hybrid Journal   (Followers: 25)
Disability & Rehabilitation     Hybrid Journal   (Followers: 80)
Disability & Society     Hybrid Journal   (Followers: 88)
Disability and Health Journal     Hybrid Journal   (Followers: 21)
Disability and Rehabilitation: Assistive Technology     Hybrid Journal   (Followers: 43)
Disability Compliance for Higher Education     Hybrid Journal   (Followers: 9)
Disability Studies Quarterly     Open Access   (Followers: 46)
Disability, CBR & Inclusive Development     Open Access   (Followers: 17)
Distúrbios da Comunicação     Open Access  
Early Popular Visual Culture     Hybrid Journal   (Followers: 4)
European Review of Aging and Physical Activity     Open Access   (Followers: 11)
Health Expectations     Open Access   (Followers: 16)
Hearing, Balance and Communication     Hybrid Journal   (Followers: 5)
Inclusion     Full-text available via subscription   (Followers: 18)
Indian Journal of Cerebral Palsy     Open Access   (Followers: 1)
Intellectual and Developmental Disabilities     Full-text available via subscription   (Followers: 42)
Intellectual Disability Australasia     Full-text available via subscription   (Followers: 13)
International Journal of Audiology     Hybrid Journal   (Followers: 20)
International Journal of Developmental Disabilities     Hybrid Journal   (Followers: 41)
International Journal of Disability Management Research     Full-text available via subscription   (Followers: 11)
International Journal of Language & Communication Disorders     Hybrid Journal   (Followers: 58)
International Journal of Orthopaedic and Trauma Nursing     Hybrid Journal   (Followers: 11)
International Journal of Technology Assessment in Health Care     Hybrid Journal   (Followers: 15)
International Journal on Disability and Human Development     Hybrid Journal   (Followers: 21)
Journal for Healthcare Quality     Hybrid Journal   (Followers: 25)
Journal of Accessibility and Design for All     Open Access   (Followers: 13)
Journal of Aging and Health     Hybrid Journal   (Followers: 26)
Journal of Applied Research in Intellectual Disabilities     Hybrid Journal   (Followers: 53)
Journal of Autism and Developmental Disorders     Hybrid Journal   (Followers: 94)
Journal of Deaf Studies and Deaf Education     Hybrid Journal   (Followers: 13)
Journal of Disability & Religion     Hybrid Journal   (Followers: 14)
Journal of Disability Policy Studies     Hybrid Journal   (Followers: 31)
Journal of Early Hearing Detection and Intervention     Open Access   (Followers: 7)
Journal of Elder Abuse & Neglect     Hybrid Journal   (Followers: 7)
Journal of Gerontological Social Work     Hybrid Journal   (Followers: 13)
Journal of Intellectual & Developmental Disability     Hybrid Journal   (Followers: 66)
Journal of Intellectual Disabilities     Hybrid Journal   (Followers: 40)
Journal of Intellectual Disability - Diagnosis and Treatment     Hybrid Journal   (Followers: 9)
Journal of Intellectual Disability Research     Hybrid Journal   (Followers: 71)
Journal of Literary & Cultural Disability Studies     Hybrid Journal   (Followers: 15)
Journal of Occupational Therapy, Schools, & Early Intervention     Hybrid Journal   (Followers: 54)
Journal of Policy and Practice In Intellectual Disabilities     Hybrid Journal   (Followers: 25)
Journal of Science Education for Students with Disabilities     Open Access   (Followers: 4)
Journal of Social Work in Disability & Rehabilitation     Hybrid Journal   (Followers: 19)
Journal of Speech, Language, and Hearing Research     Full-text available via subscription   (Followers: 91)
Journal of Spinal Cord Medicine     Hybrid Journal   (Followers: 5)
Learning Disabilities : A Multidisciplinary Journal     Full-text available via subscription   (Followers: 8)
Learning Disability Practice     Full-text available via subscription   (Followers: 23)
Mental Health Practice     Full-text available via subscription   (Followers: 23)
Music and Medicine     Hybrid Journal   (Followers: 2)
Physical & Occupational Therapy in Pediatrics     Hybrid Journal   (Followers: 65)
Physical Disabilities : Education and Related Services     Open Access   (Followers: 2)
Pró-Fono Revista de Atualização Científica     Open Access  
Public Policy and Aging Report     Hybrid Journal   (Followers: 2)
Research and Practice in Intellectual and Developmental Disabilities     Hybrid Journal  
Revista Brasileira de Educação Especial     Open Access   (Followers: 1)
Revista Espaço     Open Access  
Revista Española de Discapacidad     Open Access  
Revista Médica Internacional sobre el Síndrome de Down     Full-text available via subscription   (Followers: 1)
Revue francophone de la déficience intellectuelle     Full-text available via subscription   (Followers: 1)
Scandinavian Journal of Disability Research     Open Access   (Followers: 26)
Sexuality and Disability     Hybrid Journal   (Followers: 17)
Siglo Cero. Revista Española sobre Discapacidad Intelectual     Open Access  
Sign Language Studies     Full-text available via subscription   (Followers: 7)
Society and Mental Health     Hybrid Journal   (Followers: 14)
Speech Communication     Hybrid Journal   (Followers: 16)
Stigma and Health     Full-text available via subscription  
Stigma Research and Action     Open Access   (Followers: 5)
Stress     Hybrid Journal   (Followers: 7)
Technical Aid to the Disabled Journal     Full-text available via subscription   (Followers: 1)
Technology and Disability     Hybrid Journal   (Followers: 26)
Topics in Language Disorders     Hybrid Journal   (Followers: 14)
Visual Cognition     Hybrid Journal   (Followers: 12)
Visual Communication     Hybrid Journal   (Followers: 9)
Visual Communication Quarterly     Hybrid Journal   (Followers: 7)
Visual Studies     Hybrid Journal   (Followers: 4)
Similar Journals
Journal Cover
Autism
Journal Prestige (SJR): 1.739
Citation Impact (citeScore): 4
Number of Followers: 347  
 
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1362-3613 - ISSN (Online) 1461-7005
Published by Sage Publications Homepage  [1099 journals]
  • Effects of autism acceptance training on explicit and implicit biases
           toward autism
    • Authors: Desiree R Jones, Kilee M DeBrabander, Noah J Sasson
      Abstract: Autism, Ahead of Print.
      Non-autistic adults often hold explicit and implicit biases toward autism that contribute to personal and professional challenges for autistic people. Although previous research indicates that non-autistic adults with higher autism knowledge and familiarity express more inclusionary attitudes, it remains unclear whether training programs designed to promote autism acceptance and understanding affect subsequent implicit and explicit biases toward autism. In this study, non-autistic adults (N = 238) completed an autism acceptance training featuring factual information and engaging first-person narratives, a general mental health training not mentioning autism, or a no-training control, then responded to surveys assessing their autism knowledge, stigma, and impressions of autistic adults, and completed a novel implicit association task about autism. Non-autistic adults in the autism acceptance training condition reported more positive impressions of autistic adults, demonstrated fewer misconceptions and lower stigma about autism, endorsed higher expectations of autistic abilities, and expressed greater social interest in hypothetical and real autistic people. However, training had no effect on implicit biases, with non-autistic adults associating autism-related labels with unpleasant personal attributes regardless of training condition. These findings suggest that the autism acceptance training program in this study, designed to increase autism knowledge and familiarity among non-autistic people, holds promise for reducing explicit but not implicit biases toward autism.Lay abstractAutistic adults face prejudice from non-autistic people. They are often judged unfairly and left out of social activities because of their differences. This can make it difficult for autistic people to make friends and find jobs. Some training programs have tried to teach autistic people to act more like non-autistic people to help them gain acceptance. Fewer have focused on teaching non-autistic people how to be more autism friendly. In this study, we used a short training video that teaches people about autism. The video was created with the help of autistic adults and included clips of real autistic people. We found that non-autistic people who watched this video had better knowledge about autism and showed more autism-friendly attitudes than those who watched a video about mental health or those who did not watch any video. They were more open to having a relationship with an autistic person and had more positive beliefs about autism. However, our video did not affect people’s unconscious attitudes about autism. People in our study connected autism with unpleasant traits, even if they had watched the autism training video. This suggests that teaching non-autistic people about autism may promote more autism-friendly attitudes, but some beliefs may be harder to change.
      Citation: Autism
      PubDate: 2021-01-21T07:13:07Z
      DOI: 10.1177/1362361320984896
       
  • Differential predictors of well-being versus mental health among parents
           of pre-schoolers with autism
    • Authors: Cherie C Green, Jodie Smith, Catherine A Bent, Lacey Chetcuti, Rhylee Sulek, Mirko Uljarević, Kristelle Hudry
      Abstract: Autism, Ahead of Print.
      Extensive research has shown elevated mental health difficulties among parents of children with autism compared to other parents. Although several studies have explored factors related to mental health among parents of children with autism, the factors that influence and promote well-being remain poorly characterised. Parents of young, newly diagnosed autistic children may also be particularly vulnerable to stressors that impact mental health and well-being. We examined child-, parent-, and family/socioeconomic factors associated with concurrent mental health and well-being among 136 parents of young children with autism, aged 13–48 months. Parental mental health was predicted by both trait negative emotionality and reported child autism symptoms, while well-being was predicted by parent factors alone, including trait extraversion and mindfulness. Broader child characteristics and family/socioeconomic contextual factors made no significant contribution in regression models. While the mental health and well-being of parents with young autistic children are associated with one another, unique predictors seem to exist. That well-being was uniquely predicted by a modifiable parent characteristic – mindfulness – suggests the potential for early supports to bring direct benefits for parents, in the context of raising a young child with autism.Lay abstractRaising a child with autism has been linked to mental health difficulties. Poor parental mental health is likely influenced by various factors – including child-, parent-, and family/socioeconomic characteristics. However, little is known about what influences and promotes well-being (as opposed to mental health) among parents of young, newly diagnosed autistic children who may be particularly vulnerable. We examined child-, parent-, and family/socioeconomic factors associated with each of mental health and well-being in a sample of 136 parents of pre-school-aged children. Parental mental health was linked to both child- (i.e. autism symptom severity) and parent-related factors (i.e. personality traits reflecting a tendency to experience negative emotions). By contrast, in additional to mental health difficulties, which were linked to well-being, only other parent-related characteristics (and not child characteristics) were related to well-being. These included personality traits reflecting a tendency to be more extraverted/sociable, and also mindfulness. Other child-related and family/socioeconomic context factors (including household income, parental education level) were not linked to parental mental health or well-being in this sample. These results support the idea that poorer mental health and well-being are not simply the opposite of one another. That is, while these two factors were related, they were linked to different personal characteristics. Perhaps most importantly, the link between well-being and mindfulness – a personal characteristic that parents can improve – suggests mindfulness-based interventions may be helpful in directly supporting parental well-being in the context of raising a young child with autism.
      Citation: Autism
      PubDate: 2021-01-21T07:11:46Z
      DOI: 10.1177/1362361320984315
       
  • Can pictorial narration offer a solution to teacher training on the
           effective inclusion of students with autism spectrum disorder in
           low-resource settings' Investigation on knowledge and stigma change
    • Authors: Hui Min Low, Tze Peng Wong, Lay Wah Lee, Somchay Makesavanh, Bountheing Vongsouangtham, Vikate Phannalath, Aznan Che Ahmad, Ann Sien Sut Lee
      Abstract: Autism, Ahead of Print.
      The main aim of this article is to explore whether pictorial narration could offer a solution to teacher training on the effective inclusion of students with autism spectrum disorder in a low-resource context in the Lao People’s Democratic Republic. For this purpose, pre- and post-training knowledge data were collected from 87 Laotian teachers who participated in teacher training using a pictorial narrative e-module called The Story of KhamdyTM. The teacher training included a half-day orientation workshop, followed by 4 weeks of online learning. Statistically significant improvement in autism spectrum disorder knowledge and reduction in autism spectrum disorder stigma was recorded for the teachers after completing the teacher training. The findings on social validity pointed to high acceptance toward the pictorial narrative method and the content designed for the purpose of this training. The teachers’ acceptance of the training method was found to have positive effects on their knowledge changes in the diagnosis and etiology aspects of autism spectrum disorder knowledge. The findings supported the use of a pictorial narration approach in imparting knowledge about inclusive education and autism spectrum disorder to teachers in a least developed country. The findings offered insights to explain the knowledge change and stigma reduction recorded.Lay abstractIn this study, we explored whether pictorial narration could offer a solution to teacher training on effective inclusion of students with autism spectrum disorder in the Lao People’s Democratic Republic. For this purpose, pre- and post-training knowledge data were collected from 87 Laotian teachers who participated in teacher training using a pictorial narrative e-module called The Story of KhamdyTM. The teachers’ knowledge test results and feedback were analyzed. The findings indicated that teachers’ acceptance toward the training method had positive effects on their knowledge changes and supported the use of a pictorial narration approach in imparting knowledge about inclusive education and autism spectrum disorder to teachers in a least developed country.
      Citation: Autism
      PubDate: 2021-01-20T05:06:37Z
      DOI: 10.1177/1362361320984899
       
  • Health characteristics of reproductive-aged autistic women in Ontario: A
           population-based, cross-sectional study
    • Authors: Ami Tint, Hilary K Brown, Simon Chen, Meng-Chuan Lai, Lesley A Tarasoff, Simone N Vigod, Susan Parish, Susan M Havercamp, Yona Lunsky
      Abstract: Autism, Ahead of Print.
      While an increasing number of girls and women are being identified with autism, we know little about the health of reproductive-aged autistic women. Our objectives were to (1) describe health characteristics of reproductive-aged autistic women who could potentially become pregnant and (2) compare these characteristics with those of non-autistic women. We conducted a population-based cross-sectional study using 2017–2018 administrative health data from Ontario, Canada. A total of 6,870 fifteen- to 44-year-old autistic women were identified and compared with 2,686,160 non-autistic women. Variables of interest included social determinants of health (neighborhood income, residential instability, material deprivation, rurality), health (co-occurring medical and psychiatric conditions, use of potentially teratogenic medications, history of assault), and health care factors (continuity of primary care). Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, use of potentially teratogenic medications, and history of assault. These findings highlight the need for health interventions tailored to the needs of reproductive-aged autistic women.Lay abstractWhile an increasing number of girls and women are being identified with autism, we know little about reproductive-aged autistic women’s health. This study used administrative data from Ontario, Canada, to compare the health of reproductive-aged autistic women with non-autistic women. Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, history of assault, and use of potentially teratogenic medications (i.e. drugs that can be harmful to the development of an embryo or fetus). These findings suggest that there is a need for health interventions tailored to the needs of reproductive-aged autistic women.
      Citation: Autism
      PubDate: 2021-01-20T05:02:37Z
      DOI: 10.1177/1362361320982819
       
  • Core experiences of parents of children with autism during the COVID-19
           pandemic lockdown
    • Authors: Itay Tokatly Latzer, Yael Leitner, Orit Karnieli-Miller
      Abstract: Autism, Ahead of Print.
      The lockdown that was imposed by governments as part of the attempt to contain the COVID-19 pandemic included extreme measures, such as home confinement and the shutting down of special education systems. Our aim was to learn about the core experiences of parents of children with autism during this significant life disturbance. Thirty-one parents of 25 children with autism participated in semi-structured telephone interviews which were transcribed verbatim and underwent a qualitative, immersion/crystallization analysis. The analysis was conducted in an iterative consensus-building process to identify parents’ experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown. The main themes that emerged related to the various parental concerns; the major difficulties encountered during this unique time, the functional, social, and behavioral implications the lockdown had on these children; and the manner in which the parents coped as an indication of their resourcefulness and outlook. Our findings broaden the insight into the underlying elements of the hardships and gains experienced by children with autism and their parents in times of significant life adversity. Programs in such times should be directed at supporting and guiding parents on how to better accommodate to the situation, thereby optimizing their coping strategies and resilience.Lay abstractThe lockdown and home isolation due to the COVID-19 pandemic led to significant transformation in lifestyles. Being a parent in this situation was not easy for anyone, much less for parents of children with special needs. The shutting down of special education systems meant that parents lost a vital support network and had to be the sole full-time caregivers despite often lacking the skills to cope with this new and daunting situation. We interviewed parents and learned that the main difficulties faced by homebound autistic children stemmed from the change in routine, lack of special education services, limited physical space, and food- and sleep-related issues. Some children experienced worsening in behavioral, social, and developmental domains, yet others seemed to not only overcome the challenges of changing conditions but even benefit from them. The children’s success or failure was directly related to how their parents coped. The key factors that enabled successful coping were the parents’ ability to accommodate to the child’s needs, their own creativeness and resourcefulness, and a generally positive outlook. The results of this analysis revealed that the best way to benefit autistic children caught up in drastic changes in their routine lifestyle is to invest in a strong support system for their parents.
      Citation: Autism
      PubDate: 2021-01-13T05:29:32Z
      DOI: 10.1177/1362361320984317
       
  • End-user perspectives on the development of an online intervention for
           parents of children on the autism spectrum
    • Authors: Susannah Hermaszewska, Jacqueline Sin
      Abstract: Autism, Ahead of Print.
      Strong evidence suggests that parents of children on the autism spectrum face increased stressors to their physical and mental wellbeing due to the demands of caregiving and paucity of support. The disparity between the services currently offered and unmet needs indicates that accessible and flexible support through online delivery is needed for parents. This study presents the ideas and perspectives collected from five focus groups of 17 parents of autistic children, on the optimal content and implementation strategy of an online intervention. Using thematic framework analysis, we derived themes under the categories: the need for online interventions; content and design; and implementation. Parents supported the development of a multicomponent online intervention which combines psychoeducation with peer-support and access to healthcare professionals.Lay abstractParent caregivers play an essential role in the lives of individuals on the autism spectrum. The demands of caregiving can have negative effects on the mental and physical wellbeing of parents. Different types of formal support have been developed to help parents to cope with caregiving; however, many parents struggle to access services due to limited availability and busy schedules. The Internet could offer parents more accessible and flexible support. We asked 17 parents what content they would like to include in an online resource. Parents told us about their experiences trying to access and use existing formal support and websites. They overwhelmingly supported the development of an online resource informed by their suggestions. Parents emphasised the need for easier access to information through educational components and direct access to healthcare professionals online. Parents also wanted help with finding existing services and reliable, locally relevant information. Parents stressed the need for a safe environment to meet and chat with other parents online. This research forms the first stage in the development process of an online health resource for parents.
      Citation: Autism
      PubDate: 2021-01-11T09:47:59Z
      DOI: 10.1177/1362361320984895
       
  • Physical activity and screen time among youth with autism: A longitudinal
           analysis from 9 to 18 years
    • Authors: J Dahlgren, S Healy, M MacDonald, J Geldhof, K Palmiere, JA Haegele
      Abstract: Autism, Ahead of Print.
      To date, studies using cross-sectional methodologies make up a majority of the literature surrounding children with autism spectrum disorders and participation in physical activity and screen time. Longitudinal studies are needed to examine how physical activity and screen time behaviors co-develop for children with and without an autism spectrum disorder. To address this research gap, this study compared how physical activity and screen time levels changed over time (9 to 18 years of age) between youth with autism spectrum disorder and youth with neurotypical development. Data on the levels of moderate-to-vigorous physical activity, light physical activity, television-, and video game-based screen time, collected as a part of the “Growing up in Ireland” study, were compared between youth with autism spectrum disorder and a propensity-matched sample of youth with neurotypical development (n = 88 per group; 176 in total). Robust regression analyses indicated that children with autism spectrum disorder became less active over time compared to children with neurotypical development and that video game screen time also differed significantly between the groups when children were 9 years old. These findings elucidate important disparities present between these groups of children during pivotal developmental times.Lay abstractTo date, studies using cross-sectional methodologies make up a majority of the literature surrounding children with autism spectrum disorders and participation in physical activity and screen time. Longitudinal studies are needed to examine how physical activity and screen time behaviors co-develop for children with and without an autism spectrum disorder. To address this research gap, this study compared how physical activity and screen time levels changed over time (from 9 to 18 years of age) between youth with autism spectrum disorder and youth with neurotypical development. Data on the levels of moderate-to-vigorous physical activity, light physical activity, television-, and video game-based screen time, collected as a part of the “Growing up in Ireland” study, were compared between youth with autism spectrum disorder and a propensity-matched sample of youth with neurotypical development (n = 88 per group; 176 in total). Robust regression analyses indicated that children with autism spectrum disorder became less active over time compared to children with neurotypical development and that video game screen time also differed significantly between the groups when children were 9 years old. These findings elucidate important disparities present between these groups of children during pivotal developmental times.
      Citation: Autism
      PubDate: 2021-01-07T08:57:47Z
      DOI: 10.1177/1362361320981314
       
  • Enhancing developmental–behavioral pediatric rotations by teaching
           residents how to evaluate autism in primary care
    • Authors: Jeffrey F Hine, Liliana Wagner, Rachel Goode, Verity Rodrigues, Julie Lounds Taylor, Amy Weitlauf, Zachary E Warren
      Abstract: Autism, Ahead of Print.
      Most pediatric residency programs do not provide adequate practical experiences for residents in autism-related care, with a specific dearth of training in diagnostic processes. Without this training, residents enter the primary care workforce with uncertainty surrounding implementation of standard-of-care recommendations for children with autism. Our curriculum was designed to improve upon previously passive shadowing experiences within our developmental–behavioral pediatric rotation by integrating hands-on training in within-practice diagnostic identification and care coordination. In addition to multiple web-based learning activities (including a tutorial teaching administration of an interactive assessment tool), residents were required to actively participate in autism evaluations under supervision of an attending provider. Data were collected to assess feasibility of curricular changes as well as increased comfort level across recommended practice behaviors. Regarding feasibility, 95% of residents completed training components and pre-/post-ratings indicated significant increases in comfort in identifying symptoms/risk for autism, providing feedback about diagnostic decision, and effectively connecting families with services. Outcomes suggest feasibility of model and significantly increased resident comfort level across a range of recommended practice behaviors. This project reflects a first step in advancing incorporation of autism training into pediatric residency programs.Lay abstractMost physician preparation programs do not provide enough practical experiences in autism-related care. This is especially true for how to assess for and diagnose autism. Without this training, many pediatricians are not well prepared to implement appropriate care for children with autism and their families. We designed a curriculum to improve training for medical residents that involved explicit hands-on training in diagnostic identification and care coordination for toddlers at risk for autism. We collected data to assess whether our enhanced curriculum led to increased comfort level across recommended practice behaviors. Almost all the residents were able to complete the training within their rotation and our surveys indicated significant increases in residents feeling more comfortable identifying symptoms of autism, providing feedback about diagnostic decisions, and effectively connecting families with services. A significant majority of residents considered it appropriate or very appropriate for children to receive a diagnosis solely from a primary care provider. Our results suggest feasibility of the enhanced model, and this project reflects the first step in advancing incorporation of autism training into pediatric residency programs.
      Citation: Autism
      PubDate: 2021-01-06T05:12:40Z
      DOI: 10.1177/1362361320984313
       
  • Short report: Autistic parents’ views and experiences of talking about
           autism with their autistic children
    • Authors: Laura Crane, Lok Man Lui, Jade Davies, Elizabeth Pellicano
      Abstract: Autism, Ahead of Print.
      Little is known about how parents talk about autism with their autistic children, particularly among families in which both a parent and child are autistic. Using an online survey, we gathered quantitative and qualitative data from 34 autistic parents (most of whom had told their children about their diagnosis) to address this knowledge gap. There was considerable overlap between the views and experiences of the autistic parents in this study and the largely non-autistic parent samples in previous research. Specifically, parents emphasised the importance of being open and honest about the diagnosis, disclosing the diagnosis as early as possible, individualising discussions to children’s needs and framing the diagnosis positively. There were, however, areas in which the views and experiences of the current sample differed from previous research on non-autistic samples. First, our sample of autistic parents outlined the benefits of their own experiential expertise, which they felt resulted in heightened understanding and empathy with their children. Second, our sample tended not to express concerns about disclosure potentially having a negative impact. Finally, our participants did not express a want or need for professional support with disclosure. Instead, they reported feeling well equipped to support their children using their own knowledge and lived experience.Lay abstractPrevious research examining how parents talk about autism with their children has tended to focus on parents who are not autistic themselves. We collected information on this topic from 34 autistic parents of autistic children (most of whom had told their children about their diagnosis). We found similarities, but also differences, between the views and experiences of autistic parents in this research and those reported in previous research (in studies of largely non-autistic parents). Similarities include the following: it is important to be open and honest about the diagnosis; the diagnosis should be introduced/discussed as early as possible; discussions should be tailored to each individual child’s needs; and we should not overlook the challenges associated with autism, but it is important to focus on positive aspects too. Differences include the following: autistic parents used personal experiences in conversations about autism, which was felt to result in increased understanding and empathy with their children; autistic parents overwhelmingly focused on more positive aspects of an autism diagnosis; our sample did not express concerns that discussions could have negative consequences too (e.g. making children more anxious); and autistic parents did not want or need professional support to talk about autism with their children (instead, they felt confident in using their own knowledge/experiences to guide discussions).
      Citation: Autism
      PubDate: 2021-01-05T04:37:13Z
      DOI: 10.1177/1362361320981317
       
  • Ameliorating the disadvantage for autistic job seekers: An initial
           evaluation of adapted employment interview questions
    • Authors: Katie Maras, Jade Eloise Norris, Jemma Nicholson, Brett Heasman, Anna Remington, Laura Crane
      Abstract: Autism, Ahead of Print.
      Despite possessing valuable skills, social communication differences mean that autistic people are frequently disadvantaged in job interviews. We examined how autistic and non-autistic adults compared on standard (unmodified) job interview questions, and then used these findings to develop and evaluate supportive adaptations to questions. Fifty adults (25 autistic, 25 non-autistic) took part in two mock job interviews. Interview 1 provided a baseline measure of performance when answering typical, unmodified interview questions. Employment experts (unaware of participants’ autism diagnoses) rated all interviewees on question-specific performance and overall impressions and then provided feedback about how interviewees could improve and how questions could be adapted to facilitate this. Interviewees also provided feedback about the interview process from their perspective. Adaptations to the questions were developed, with Interview 2 taking place approximately 6 months later. Results demonstrated that, in Interview 1, employment experts rated autistic interviewees less favourably than nonautistic interviewees. Ratings of both autistic and non-autistic participants’ answers improved in Interview 2, but particularly for autistic interviewees (such that differences between autistic and non-autistic interviewees’ performance reduced in Interview 2). Employers should be aware that adaptations to job interview questions are critical to level the playing field for autistic candidates.Lay abstractDespite possessing valuable skills, differences in the way that autistic people understand and respond to others in social situations mean that they are frequently disadvantaged in job interviews. We examined how autistic and non-autistic adults compared on standard (unmodified) job interview questions, and then used these findings to develop and evaluate supportive adaptations to questions. Fifty adults (25 autistic, 25 non-autistic) took part in two mock job interviews. Interview 1 provided a baseline measure of performance when answering typical, unmodified interview questions. Employment experts (unaware of participants’ autism diagnoses) rated all interviewees on their responses to each question and their overall impressions of them and then provided feedback about how interviewees could improve and how questions could be adapted to facilitate this. Interviewees also provided feedback about the interview process, from their perspective. Adaptations to the questions were developed, with Interview 2 taking place approximately 6 months later. Results demonstrated that, in Interview 1, employment experts rated autistic interviewees less favourably than non-autistic interviewees. Ratings of both autistic and non-autistic participants’ answers improved in Interview 2, but particularly for autistic interviewees (such that differences between autistic and non-autistic interviewees’ performance reduced in Interview 2). Employers should be aware that adaptations to job interview questions are critical to level the playing field for autistic candidates.
      Citation: Autism
      PubDate: 2020-12-19T06:02:36Z
      DOI: 10.1177/1362361320981319
       
  • Autism in the Western Cape province of South Africa: Rates,
           socio-demographics, disability and educational characteristics in one
           million school children
    • Authors: Sarosha Pillay, Madeleine Duncan, Petrus J de Vries
      Abstract: Autism, Ahead of Print.
      The prevalence of autism spectrum disorder in South Africa is unknown and, to date, very little research has been performed within school systems that could inform the rates, distribution and profile of needs of children with autism spectrum disorder in education. We performed a comprehensive database search of all children with autism spectrum disorder in the formal education system in the Western Cape province of South Africa and compared the findings with population demographic expectations of the province. From a population of 1,154,353 children attending schools in the province, a total of 940 children with a diagnosis of autism spectrum disorder were identified, representing a rate of 0.08%. The male: female ratio was 5.5:1. There was a significant difference in the self-reported racial and language composition of the autism spectrum disorder sample compared with the Western Cape demographics where a higher proportion of children with autism spectrum disorder were from White racial groups and English-speaking homes. Eighty-nine percent of children with autism spectrum disorder were in Special Schools and only 10% were in Ordinary/Mainstream Schools. Most of the children (83%) attended schools in the City of Cape Town and only 17% in rural areas. Co-occurring intellectual disability was reported in 22.2% of the population, attention-deficit/hyperactivity disorder in 2.6% and epilepsy in 0.7%. Data showed a 76.03% increase in autism spectrum disorder in schools between 2012 and 2016, with an average increase of 15.18% per year. Findings suggested an under-representation of autism spectrum disorder in schools and an under-identification of co-occurring conditions. Results indicate that despite being one of the better-resourced provinces in South Africa, the Western Cape is not equipped to identify and meet the culturally and linguistically diverse needs of its communities. We propose strengthening of educational systems for children with autism spectrum disorder in the Western Cape, and similar investigations in other South African provinces.Lay abstractThere is very little information about autism spectrum disorder in South Africa and not much is known about children with autism spectrum disorder and their educational needs. In this study, we searched for all children with autism spectrum disorder attending schools in the Western Cape province of South Africa and compared our findings with the profile of people living in the province. We found fewer children with autism spectrum disorder in schools than expected (0.08%) and co-occurring conditions (intellectual disability = 22.2%, attention-deficit/hyperactivity disorder = 2.6% and epilepsy = 0.7%) were reported at lower rates. More children were from White racial groups and from English-speaking homes compared with the Western Cape population demographics. Most of the children (89%) attended schools for children with Special Educational Needs and only 10% were in Ordinary/Mainstream schools. Eighty-three percent attended schools in urban areas and 17% in rural areas. There was a 76.03% increase in children with autism spectrum disorder in schools between 2012 and 2016. Our findings support the need for better identification and reporting of children with autism spectrum disorder in the education system. We propose urgent review and strengthening of education systems for children with autism spectrum disorder in the Western Cape province and in other parts of South Africa.
      Citation: Autism
      PubDate: 2020-12-18T07:52:06Z
      DOI: 10.1177/1362361320978042
       
  • Autism screening and conditional cash transfers in Chile: Using the
           Quantitative Checklist (Q-CHAT) for early autism detection in a low
           resource setting
    • Authors: Andres Roman-Urrestarazu, Carolina Yáñez, Claudia López-Garí, Constanza Elgueta, Carrie Allison, Carol Brayne, Mónica Troncoso, Simon Baron-Cohen
      Abstract: Autism, Ahead of Print.
      Diagnosis of Autism Spectrum Conditions (ASC) can be an extended procedure since ASC tend to both vary greatly across individual symptoms and diagnostic pathways with serious challenges to opportune access and diagnosis in low resource settings. We adapted the Q-CHAT-25 for use in a routine health check-ups programme at Chilean primary health clinics by developing a 10-item version of this questionnaire recruiting n = 287 (F: 112/M: 175) participants (Controls: n = 125, F: 58/M: 67; Developmental Delay: n = 149, F: 53/M: 96; Autism Spectrum Conditions: n = 13, F: 1/M: 12). Our findings show that the Q-CHAT-10 can be successfully applied in health-check programmes. The results for the Q-CHAT-10 show high internal consistency (Cronbach’s α: 0.85) and good overall performance, significantly correlating (r = 0.79, p 
      Citation: Autism
      PubDate: 2020-12-17T04:58:48Z
      DOI: 10.1177/1362361320972277
       
  • Physical health needs and self-reported health status among adults with
           autism
    • Authors: Paul Turcotte, Lindsay Shea
      Abstract: Autism, Ahead of Print.
      Self-reported health status is an integral method to understand how adults on the autism spectrum perceive their healthcare and service needs. The objective of the study is to examine how self-reported health changes with use and need of physical health services. The Pennsylvania autism needs assessment included a survey of adults on the autism spectrum responding for themselves. Self-reported health status change over the previous year was reported as improved, decreased, or stable. Adjusted multinomial logistic regression was used to identify characteristics of individuals who experienced decreased or improved health. A total of 1197 adults responded, with most respondents’ health remaining stable (68%). Respondents who had a decreased health status reported needing more physical health services (1.64 services) compared to respondents with stable health (1.07 services) and improved health (1.18 services). Respondents with a decreased health status had 1.23 higher odds (95% confidence interval: 1.08–1.40) of having an increase in one physical health service need as compared to those whose health remained stable. Increased physical health service needs were associated with a decreased health status. Adults on the autism spectrum can present with a complex array of needs and determining the role physical health services play in improving and maintaining health remains critical.Lay abstractSelf-reported health can be a powerful measure of how adults with autism spectrum disorder view their overall health. The goal of this study was to determine how health statuses of adults with autism spectrum disorder change, when they are currently receiving or need more physical health services. The Pennsylvania autism needs assessment included a survey of individuals with autism aged 18 years or older responding for themselves. They indicated whether their health status changed over the previous year as improved, decreased, or remained stable. We found that most adults with autism spectrum disorder had their health remain the same (68%). We also found that adults who said their health got worse needed more physical health services, compared to those whose health remained stable, or got better. Supporting the health of adults with autism can be complex and finding out more about how physical health services play a role in that care is important.
      Citation: Autism
      PubDate: 2020-12-16T09:37:29Z
      DOI: 10.1177/1362361320971099
       
  • Embedding school cultures and climates that promote evidence-based
           practice implementation for youth with autism: A qualitative study
    • Authors: Nathaniel J Williams, Lindsay Frederick, Alix Ching, David Mandell, Christina Kang-Yi, Jill Locke
      Abstract: Autism, Ahead of Print.
      Schools play a major role in delivering behavioral health services to autistic youth. School culture and climate are strong predictors of the extent to which these services incorporate evidence-based practices; however, little is known about how school leaders shape culture and climate. Drawing on the concept of culture and climate embedding mechanisms, we conducted a qualitative study to understand the ways in which school principals embed cultures and climates that support effective implementation of evidence-based practices for youth with autism. Semi-structured interviews with 32 teachers in schools that implemented three closely related evidence-based practices for youth with autism (discrete trial training, pivotal response training, and visual schedules) explored teachers’ experiences regarding (a) implementation of the three evidence-based practices, (b) perceptions of school culture and climate, and (c) principals’ behaviors, practices, and decisions that supported or detracted from the aspects of culture and climate that supported successful implementation. Thematic analysis detailed seven mechanisms that principals used to embed cultures and climates that shaped evidence-based practice implementation. These mechanisms represent actionable targets for school leaders and inform strategies to improve the implementation of evidence-based practices for youth with autism in schools.Lay abstractSchools play a major role in providing services to youth with autism; however, not all schools use evidence-based practices, defined as interventions that are proven to improve youth well-being through rigorous research. School culture and climate are strong predictors of whether or not a school uses evidence-based practices; however, little is known about how principals can create school cultures and climates that support the use of these practices. This study interviewed 32 teachers in elementary schools that implemented three closely related evidence-based practices for youth with autism to better understand how principals create school cultures and climates that support effective services. Analysis of the teachers’ responses identified seven strategies principals can use to create school cultures and climates that support the implementation of effective practices for youth with autism. The strategies include the following: (a) support teachers to obtain professional development focused on autism, (b) align performance expectations and evaluations with the needs of students with autism and evidence-based practice delivery, (c) allocate resources to ensure adequate staff, materials, and training are available to implement evidence-based practices, (d) be open and flexible to allow teachers to use the building and resources as needed to meet students’ needs, (e) provide direct assistance, feedback, and coaching to troubleshoot challenges or involve outside experts to do so, (f) openly value the work of special education teachers and provide recognition to those who develop expertise in evidence-based practices, and (g) look for opportunities to integrate special and general education teachers and students to foster a truly inclusive climate.
      Citation: Autism
      PubDate: 2020-12-12T07:24:20Z
      DOI: 10.1177/1362361320974509
       
  • The effectiveness of physical activity interventions on communication and
           social functioning in autistic children and adolescents: A meta-analysis
           of controlled trials
    • Authors: John SY Chan, Kanfeng Deng, Jin H Yan
      Abstract: Autism, Ahead of Print.
      Difficulty with communication and social functioning are two outstanding core symptoms of autism spectrum disorder, and physical activity has long been suggested to improve autism spectrum disorder symptoms. In this meta-analysis of controlled trials, we examined the effects of physical activity interventions compared to controls on communication and social functioning in autistic children and adolescents. Included studies are published articles in English with autism spectrum disorder participants younger than 18 years. Literature search was conducted on MEDLINE, Embase, CINAHL, and related databases through 6 May 2020. Quality of study was assessed with the Cochrane risk-of-bias tool regarding randomization, allocation concealment, blinding, attrition, and selective reporting. We included 12 controlled trials (N = 350) with communication outcomes (k = 8) and/or social functioning outcomes (k = 11). Results show small to moderate intervention benefits on communication (standardized mean change = 0.27, 95% confidence interval (0.06, 0.48)) and social functioning (standardized mean change = 0.39, 95% confidence interval (0.15, 0.63)), but the result for social functioning may be susceptible to publication bias. Better intervention outcomes are observed in younger participants, suggesting the importance of early participation. This study shows the benefits of physical activity interventions, and they could be considered a cost-effective means for autism spectrum disorder management in the future.Lay abstractDifficulty with communication and social functioning are two outstanding core symptoms of autism spectrum disorder, while there is no efficacious pharmacologic treatment available to deal with them. Traditional behavioral therapies usually require specialist therapist and be conducted in specific settings, increasing burdens on families and individuals with autism. Physical activity has long been found to promote physical and mental well-beings, and it is more affordable and versatile than traditional therapies. There is preliminary support for the use of physical activity interventions to improve communication and social functioning in individuals with autism. In this study, we quantitatively aggregate data from existing controlled trials to provide an up-to-date inquiry into the effectiveness of physical activity interventions on communication and social functioning in autistic children and adolescents. We included 12 trials involving 350 participants (8 trials reported communication outcomes and 11 trials reported social functioning outcomes) and found small to moderate benefits on communication and social functioning. Further analyses showed that the benefit of physical activity interventions is greater in younger participants. Results of this study suggest that physical activity interventions are effective to improve communication and social functioning in autistic children and adolescents, and early participation in the interventions can be more beneficial. Given their affordability, versatility, and efficacy, physical activity interventions could be considered a cost-effective option for autism spectrum disorder management in the future.
      Citation: Autism
      PubDate: 2020-12-12T07:23:51Z
      DOI: 10.1177/1362361320977645
       
  • Generosity of state insurance mandates and growth in the workforce for
           autism spectrum disorder
    • Authors: Ryan K McBain, Jonathan H Cantor, Aaron Kofner, Timothy Callaghan, Bradley D Stein, Hao Yu
      Abstract: Autism, Ahead of Print.
      All 50 US states have enacted mandates requiring insurers to cover autism-related services. We assessed whether and to what extent variation in generosity of state insurance mandates has been associated with rate of growth in the health workforce for children with autism spectrum disorder: including board-certified behavioral analysts, child psychiatrists, and pediatricians. Drawing data from the National Conference of State Legislatures and Area Health Resource Files, we evaluated eight mandate policy features, utilizing a fixed-effect longitudinal regression framework to examine their relationships with workforce growth during a 15-year period (2003–2017) over which 44 states enacted a mandate. Aspects of mandate generosity included ages covered, spending caps, and types of services covered. We found that mandate generosity was closely associated with the magnitude of increase in supply of board-certified behavioral analysts and—to a lesser extent—child psychiatrists. States with the most generous mandates would be expected to have 39% more board-certified behavioral analysts and 17% more child psychiatrists in 2017, compared to states with least generous mandates. We found no association between mandate generosity and supply of pediatricians. Collectively, our results suggest that the degree of generosity afforded by mandates may be as important as the passage of mandate legislation itself for encouraging workforce growth.Lay abstractTo improve access to health services for children with autism spectrum disorder, US states have passed laws requiring health insurers to cover autism-related care, commonly known as state insurance mandates. However, the features of mandates differ across states, with some state laws containing very generous provisions and others containing very restrictive provisions such as whether the mandates include children aged above 12 years, whether there is a limit on spending, and whether there are restrictions on the types of services covered. This study examined the relationship between generosity of mandates and growth in the health workforce between 2003 and 2017, a period during which 44 states passed mandates. We found that states that enacted more generous mandates experienced significantly more growth in board-certified behavioral analysts who provide behavioral therapy as well as more growth in child psychiatrists. We did not find differences in the growth of pediatricians, which is a less specialized segment of the workforce. Our findings were consistent across eight different mandate features and suggest that the content of legislation may be as important as whether or not legislation has been passed in terms of encouraging growth in the supply of services for children with autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-12-04T10:14:45Z
      DOI: 10.1177/1362361320976744
       
  • Functional gender differences in autism: An international,
           multidisciplinary expert survey using the International Classification of
           Functioning, Disability, and Health model
    • Authors: Karl Lundin, Soheil Mahdi, Johan Isaksson, Sven Bölte
      Abstract: Autism, Ahead of Print.
      Few studies have addressed gender differences in autism in relation to functioning and across cultures. We aimed to explore functional gender differences in autism from a multidisciplinary, global perspective using the International Classification of Functioning, Disability, and Health. Perceptions among professionals in high-income countries and middle-income countries were examined based on qualitative survey data from N = 225 professionals. Of these, n = 131 professionals provided information on functional gender differences in autism. Thirty-two professionals reported perceiving no gender differences. Remaining respondents (n = 99)—representing 31 countries, all World Health Organization regions, and 10 different professions—were included in a content analysis on functional gender differences, which generated three main categories and 13 subcategories. The subcategories were subsequently linked to International Classification of Functioning, Disability, and Health categories. Autistic males were described as displaying more externalizing behaviors, and females as having more internalizing problems and being more socially motivated. Thirty-two International Classification of Functioning, Disability, and Health categories were identified, of which 31 were covered by the comprehensive Core Set for autism. Gender differences in core symptoms and co-existing problems were acknowledged by professionals from both high-income countries and middle-income countries, while differences in social behaviors, including camouflaging, were more frequently described by experts from high-income countries.Lay abstractIn this study, we explored if professionals working with autistic people in different regions of the world perceive differences between females and males diagnosed with the condition. A total of 131 professionals responded to a survey that included an open question about gender differences in autism. Of these, 32 responded that they do not perceive gender differences in autism. The information provided by the other 99 experts was analyzed to identify common patterns. Three main differences were found, (1) Matching the clinical conceptualization of autism where professionals described differences in core symptoms of autism, and that autistic females were less similar to the conceptualization of autism. In (2) Co-existing problems, professionals described that autistic males display more apparent problems including hyperactivity, while autistic females were perceived as having more internalizing issues such as anxiety and eating disorders. In the last category, (3) Navigating the social environment, experts perceived autistic females as more socially motivated, and more inclined to camouflage social difficulties, making their challenges less evident. Professionals also perceived differences in the social environment, for example, that autistic girls receive more support from their peers while autistic boys are more often bullied. Our results suggest that professionals working in different parts of the world acknowledge gender differences in autism, but also that there might be some regional differences. Finally, we found that gender differences reported by the international professionals could largely be assessed with a shortened version of the International Classification of Functioning by the World Health Organization, specifically developed for autism.
      Citation: Autism
      PubDate: 2020-12-03T06:33:29Z
      DOI: 10.1177/1362361320975311
       
  • Altered DNA methylation in a severe subtype of idiopathic autism: Evidence
           for sex differences in affected metabolic pathways
    • Authors: Valerie W Hu, Yi Hong, Minyi Xu, Henry T Shu
      Abstract: Autism, Ahead of Print.
      Although differences in DNA methylation have been associated with both syndromic and idiopathic autism, differential methylation has not been examined previously with respect to sex differences. The goals of this study were to (1) identify differences in the DNA methylation profiles of lymphoblastoid cell lines derived from a subgroup of severely affected individuals with idiopathic autism and their respective sex-matched siblings, (2) describe autism spectrum disorder–relevant pathways and functions that may be impacted by differentially methylated genes, and (3) investigate sex-dependent differences in methylation patterns and signaling pathways. Our results revealed significant differences in DNA methylation in cells from individuals with idiopathic autism spectrum disorders and from their unaffected sex-matched siblings. The samples were divided either by sex or by separation into discovery and validation groups. The genes in differentially methylated regions were statistically enriched in autism susceptibility genes and canonical pathways commonly associated with autism spectrum disorders, including synaptogenesis, semaphorin, and mammalian target of rapamycin signaling pathways. Differentially methylated region–associated genes in females were additionally associated with pathways that implicate mitochondrial dysfunction and metabolic disorders that may offer some protection against autism spectrum disorders. Further investigations of sex differences are required to develop a fuller understanding of the pathobiology, gene regulatory mechanisms, and differential susceptibility of males and females toward autism spectrum disorders.Lay abstractThis study investigates altered DNA methylation that may contribute to autism spectrum disorders. DNA methylation is an epigenetic mechanism for regulating the level at which genes are expressed, and is thus complementary to genetics and gene expression analyses which look at the variations in gene structure and gene products in cells. Here, we identify DNA methylation differences between autistic and sex-matched non-autistic siblings, focusing on a subgroup of severely affected individuals with language impairment to reduce the clinical heterogeneity among the cases. Our results show significant differentially methylated genes between the sibling groups that are enriched in autism risk genes as well as in signaling and biochemical pathways previously associated with the pathobiology of autism spectrum disorders. Moreover, we show for the first time that these differences are in part sex dependent, with differentially methylated genes in females associated with pathways that implicate mitochondrial dysfunction and metabolic disorders that may offer some protection to females against autism spectrum disorders. Further investigations of sex differences are required to develop a fuller understanding of the pathobiology, gene regulatory mechanisms, and differential susceptibility of males and females toward autism spectrum disorders.
      Citation: Autism
      PubDate: 2020-12-01T06:29:26Z
      DOI: 10.1177/1362361320971085
       
  • Qualification for upper secondary education in individuals with autism
           without intellectual disability: Total population study, Stockholm, Sweden
           
    • Authors: Isidora Stark, Peiwen Liao, Cecilia Magnusson, Michael Lundberg¹, Dheeraj Rai, Anton Lager, Selma Idring Nordström
      Abstract: Autism, Ahead of Print.
      This study used the Stockholm Youth Cohort, a total population cohort (N = 364,957), to describe patterns and predictors of qualification for upper secondary education, defined by passing graduation grades in core compulsory school subjects in contemporary young individuals diagnosed with autism spectrum disorders without intellectual disability (n = 6138). At the expected age for graduation, 16 years, 29% (adjusted rate difference 95% confidence interval (28.0–30.0)) fewer autistic than non-autistic individuals were qualified for upper secondary education (57% and 86%, respectively). Comorbid attention-deficit hyperactivity disorder further increased this difference. Within the group of autistic students without intellectual disability, female sex and lower family income were associated with non-qualification for upper secondary education. The proportion of students with autism without intellectual disability who qualified for upper secondary education increased at age 20. These findings underline the need for improved support for students with a diagnosis of autism without intellectual disability in mainstream education.Lay abstractObtaining a quality education is important for any individual’s chances of leading a healthy and thriving life. Currently, educational policies in many countries underscore the rights of students with autism to be educated in mainstream schools. While there is some knowledge on school outcomes among students with autism from older studies, little is known about rates of qualification for upper secondary education among children with autism in mainstream schools today. This lack of knowledge is problematic since autism is diagnosed more widely, and prior evidence may not be relevant for individuals with autism and their families today. Using Swedish registers, we therefore examined this in a study including all children and young people in Stockholm County in 2001 through 2011. We found that about two thirds of children with autism without intellectual disability qualified for upper secondary education at the expected age, in comparison with about nine in ten among typically developing peers. We also found that girls with autism had further difficulties obtaining such qualification than boys and that those who were additionally diagnosed with attention-deficit hyperactivity disorder were particularly at risk of non-qualification. Finally, students with autism without intellectual disability had a greater chance of completing compulsory education if given an extended period to graduate. These findings underline the need for supportive interventions for children with autism during compulsory school. They may also challenge the inclusive education policy adopted by majority of western countries, at least in the wake of addressing special needs in mainstream schooling.
      Citation: Autism
      PubDate: 2020-11-28T05:08:30Z
      DOI: 10.1177/1362361320975929
       
  • Identifying children with autism spectrum disorders in Iran using the
           Autism Diagnostic Interview–Revised
    • Authors: Sayyed Ali Samadi, Roy McConkey, Ameneh Mahmoodizadeh
      Abstract: Autism, Ahead of Print.
      The assessment instruments for diagnosing children with autism spectrum disorder have been developed mostly in affluent, English-speaking countries. Among the most popular has been the Autism Diagnostic Interview–Revised. This article reports its use in Iran with the dual aims of confirming the factor structure of the revised Autism Diagnostic Interview when used to assess Iranian children for autism spectrum disorder and to identify the algorithms that best distinguish children with autism spectrum disorder from those who are developing typically and from those with intellectual disability. Study 1 contrasted the Autism Diagnostic Interview–Revised ratings given to 420 children with autism spectrum disorder from those of 110 typically developing children. In Study 2, the Autism Diagnostic Interview–Revised ratings of 720 children with autism spectrum disorder were compared with those of 172 children with intellectual disability, and from those with intellectual disability. Exploratory factor analyses identified one main factor that merged the social interaction and communication items of Autism Diagnostic Interview–Revised, but replicated the repetitive behaviour and verbal factors. Receiver operating characteristic analyses identified suitable cut-off points on the revised factor scores. Also, the age at which symptoms became apparent increased the sensitivity of the algorithm in distinguishing children with autism spectrum disorder from those with intellectual disability. These findings are in line with the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), recommendations and suggest a commonality in autism spectrum disorder presentations across different nations. The methodology used in this research could guide similar adaptations of assessment instruments for use in other cultures.Lay abstractThe diagnosis of autism spectrum disorder is a challenging task. Most of the current assessment scales have been developed in the West. The present study examines the applicability of one of the most used scales (the Autism Diagnostic Interview–Revised) in a Middle-Eastern culture. Two studies were undertaken. In the first, the Autism Diagnostic Interview–Revised ratings given to 420 children with autism spectrum disorder, aged 4–11 years, and 110 typically developing children were contrasted. In Study 2, the Autism Diagnostic Interview–Revised ratings of 720 children with autism spectrum disorder were compared with those of 172 children with intellectual disabilities to find out whether the Autism Diagnostic Interview–Revised scale would discriminate between these two types of developmental disabilities. The studies confirmed the acceptability of the scale to Iranian parents and assessors. However, the summary scores used to determine whether a child was likely to have autism spectrum disorder were recalculated on the two domains of social communication and repetitive behaviours, which were identified in the statistical analyses that are recommended for the evaluation of assessment scales. Thus the translated scale with the modified domain scoring proved very suitable for identifying Iranian children with autism spectrum disorder. Having a common tool such as Autism Diagnostic Interview–Revised will strengthen the opportunities to undertake cross-cultural research into the impact of autism spectrum disorder on the child and families.
      Citation: Autism
      PubDate: 2020-11-28T05:08:09Z
      DOI: 10.1177/1362361320974558
       
  • Characterizing the early vocabulary profiles of preverbal and minimally
           verbal children with autism spectrum disorder
    • Authors: Eileen Haebig, Eva Jiménez, Christopher R Cox, Thomas T Hills
      Abstract: Autism, Ahead of Print.
      Children with autism spectrum disorder often have significant language delays. But do they learn language differently than neurotypical toddlers' We compared the lexical skills of 64 preverbal and minimally verbal children with autism spectrum disorder to 461 vocabulary-size-matched typically developing toddlers. We also examined social features of verb knowledge using a novel collection of social ratings. Children with autism spectrum disorder produced proportionally more verbs than typically developing toddlers. Children with autism spectrum disorder produced proportionally more action and food words, while typically developing toddlers produced proportionally more animal, people words, and animal sounds and sound effects. Children with autism spectrum disorder also produced “mommy” and “daddy” at lower rates. We discuss how these differences may reflect an association between lexical development and weaknesses in social communication.Lay abstractAlthough preverbal and minimally verbal children with autism spectrum disorder represent a significant portion of the autism spectrum disorder population, we have a limited understanding of and characterization of them. Although it is a given that their lexical profiles contain fewer words, it is important to determine whether (a) the words preverbal and minimally verbal children with autism spectrum disorder produce are similar to the first words typically developing children produce or (b) there are unique features of the limited words that preverbal and minimally verbal children with autism spectrum disorder produce. The current study compared the early word profiles of preverbal and minimally verbal children with autism spectrum disorder to vocabulary-matched typically developing toddlers. Children with autism spectrum disorder produced proportionally more verbs than typically developing toddlers. Also, children with autism spectrum disorder produced proportionally more action and food words, while typically developing toddlers produced proportionally more animal words, animal sounds and sound effects, and people words. Children with autism spectrum disorder also produced “mommy” and “daddy” at lower rates. Our findings identified several areas of overlap in early word learning; however, our findings also point to differences that may be connected to core weaknesses in social communication (i.e. people words). The findings highlight words and categories that could serve as useful targets for communication intervention with preverbal and minimally verbal children with autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-11-28T05:07:59Z
      DOI: 10.1177/1362361320973799
       
  • Factors related to parental therapeutic self-efficacy in a parent-mediated
           intervention for children with autism spectrum disorder: A mixed methods
           study
    • Authors: Kaylin M Russell, Brooke Ingersoll
      Abstract: Autism, Ahead of Print.
      Parental self-efficacy, parents’ beliefs in their ability to successfully parent their child, plays an important role in family outcomes when a child has autism spectrum disorder. It is important to consider therapeutic self-efficacy, one’s feelings of self-efficacy regarding their implementation of an intervention, within parent-mediated interventions. The goal of this mixed methods study was to better understand factors that relate to parents’ therapeutic self-efficacy when implementing a telehealth-based parent-mediated intervention. Participants were 51 parents of children with autism spectrum disorder between 17 and 83 months old. Parents reported generally high therapeutic self-efficacy, and global parental self-efficacy was significantly related therapeutic self-efficacy. Thematic analysis of parents’ written reflections of the intervention’s lessons identified four themes that related to therapeutic self-efficacy: the importance of a good fit between the child’s skills and the intervention, the importance of a good fit between the parent’s interaction style and the intervention, environmental factors support intervention use, and the importance of the child’s response to the intervention. Several themes differed for parents with higher and lower therapeutic self-efficacy. Findings suggest that global parental self-efficacy plays an important role in parental therapeutic self-efficacy in parent-mediated interventions. Coaches should specifically ask about the child’s skills, parent’s interaction style, environmental challenges, and child’s response as they support parents in learning.Lay abstractParental self-efficacy refers to parents’ beliefs in their ability to successfully parent their child. Parental self-efficacy plays an important role in family outcomes when a child has autism spectrum disorder. It is important to consider therapeutic self-efficacy, one’s feelings of self-efficacy regarding their implementation of an intervention, within parent-mediated interventions. The goal of this mixed methods study was to better understand factors that relate to parents’ therapeutic self-efficacy when using a telehealth-based parent-mediated intervention. Participants were 51 parents of children with autism spectrum disorder between 17 and 83 months old. Parents had generally high therapeutic self-efficacy, and global parental self-efficacy was significantly related therapeutic self-efficacy. Parents’ written reflections revealed four themes that related to their therapeutic self-efficacy: the importance of a good fit between the child’s skills and the intervention, the importance of a good fit between the parent’s interaction style and the intervention, environmental factors support intervention use, and the importance of the child’s response to the intervention. Several themes differed for parents with higher and lower therapeutic self-efficacy. Findings suggest that global parental self-efficacy plays an important role in parental therapeutic self-efficacy in parent-mediated interventions. To support parents in learning, coaches should ask about the child’s skills, parent’s interaction style, environmental challenges, and child’s response.
      Citation: Autism
      PubDate: 2020-11-28T05:07:49Z
      DOI: 10.1177/1362361320974233
       
  • Family navigation to increase evaluation for autism spectrum disorder in
           toddlers: Screening and Linkage to Services for Autism pragmatic
           randomized trial
    • Authors: Carolyn DiGuiseppi, Steven A Rosenberg, Margaret A Tomcho, Kathryn Colborn, Kristina Hightshoe, Silvia Gutiérrez-Raghunath, Jeanette M Cordova, Jodi K Dooling-Litfin, Cordelia Robinson Rosenberg
      Abstract: Autism, Ahead of Print.
      The Screening and Linkage to Services for Autism pragmatic trial examined the effect of family navigation on referral and evaluation for autism spectrum disorder in an urban healthcare system serving low-income families. Children aged 16–30 months with initial scores ⩾3 on the Modified Checklist for Autism in Toddlers–Revised with Follow-up (M-CHAT-R/F) were randomized to usual care (n = 133) or navigation if indicated (n = 142). Bilingual, bicultural autism family navigators offered navigation to intervention-group families if the completed M-CHAT-R/F indicated the need for autism spectrum disorder diagnostic evaluation. Autism family navigators also assisted families to arrange for completion of the M-CHAT-R/F interview if not done, and then offered navigation if indicated. Of 49 families for whom navigation was indicated, 45% received navigation, including care coordination, education, and practical support. In intention-to-treat analyses, the intervention did not increase referrals for evaluation but more than doubled completed autism spectrum disorder diagnostic evaluations. Intervention children were also more likely to complete the M-CHAT-R/F interview with fidelity. Research is needed to identify effective methods to improve uptake of family navigation. Family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder (ClinicalTrials.gov, https://clinicaltrials.gov/; NCT02374541).Lay abstractYoung children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder’s effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test “real-world” implementation of family navigation. We randomly assigned 275 children aged 16–30 months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families’ access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-11-28T05:07:29Z
      DOI: 10.1177/1362361320974175
       
  • T-STAT for detecting autism spectrum disorder in toddlers aged
           18–24 months
    • Authors: Chin-Chin Wu, Chung-Hsin Chiang, Ching-Lin Chu, Lai-Sang Iao, Yuh-Ming Hou
      Abstract: Autism, Ahead of Print.
      Two studies were conducted to examine the use of the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds for detecting autism spectrum disorder in toddlers aged 18–24 months. Study 1 used receiver operating characteristics to select a cutoff score for the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds. It involved two groups of 16 toddlers each, one group with toddlers having autism spectrum disorder and the other group with chronological and mental age-matched toddlers with developmental delay. The result suggested that a cutoff of 2.50 would yield high sensitivity and specificity. In Study 2, we recruited 136 toddlers—30 with autism spectrum disorder, 33 with mild-autism spectrum disorder, and 73 with developmental delay. Using 2.50 as the cutoff score, the concurrent agreement between Taiwanese version of the Screening Tool for Autism in Two-Year-Olds risk and clinical diagnosis and Autism Diagnostic Observation Schedule yielded high sensitivity and specificity. The results of this study indicated that the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds can be used as a Level 2 autism-specific screening tool for the 18–24 months age group.Lay abstractThe benefits of early intervention for young children with autism spectrum disorder highlight the importance of early diagnosis. Reliable diagnoses of autism spectrum disorder can be made before 24 months of age. However, many children are diagnosed with autism spectrum disorder at a later age. Delayed diagnosis can occur for children with less severe symptoms and lead to missed opportunities for early intervention. This current study was executed to examine the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds in detecting autism spectrum disorder in toddlers between 18 and 24 months of age. One strength of this study was the inclusion of toddlers with autism spectrum disorder or mild-autism spectrum disorder using the strict and relaxed Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria for autism spectrum disorder simultaneously. The results of this study supported that diagnosis of toddlers with autism spectrum disorder could be made reliable before 24 months of age. And the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds was a Level 2 autism-specific screening tool for toddlers aged from 18 to 24 months in Taiwan.
      Citation: Autism
      PubDate: 2020-11-28T05:07:03Z
      DOI: 10.1177/1362361320972300
       
  • “Physical activity is beneficial to anyone, including those with ASD”:
           Antecedents of nurses recommending physical activity for people with
           autism spectrum disorder
    • Authors: Sarah Tiner, George B Cunningham, Alison Pittman
      Abstract: Autism, Ahead of Print.
      People with autism spectrum disorder are less physically active than are their peers. Nurses can play a key role in helping to promote such behaviors, but they do so sparingly. The purpose of this study, therefore, was to examine the degree to which nurses recommend physical activity to patients with autism spectrum disorder, and to identify antecedents thereof. Adopting a mixed methods approach, data were collected from a representative sample of nurses (n = 180) working in the United States. Results from regression analyses indicate that nurses were only moderately likely to recommend physical activity. When perceived barriers to physical activity were low, perceived benefits of physical activity held a positive, significant association with recommendations. However, when perceived barriers were high, the relationship between perceived benefits and recommendations was no longer significant. Inductive thematic analysis of the qualitative data showed the value nurses place on physical activity, how they interpret barriers and benefits, and strategies for making physical activity inclusive for people with autism spectrum disorder. In conclusion, nurses have an opportunity to more frequently promote physical activity to their patients with autism spectrum disorder and, in doing so, help mitigate some of the poor health outcomes people with autism spectrum disorder experience.Lay abstractParticipation in regular physical activity is linked with physical, psychological, and social improvements. Nevertheless, persons with autism spectrum disorder participate at lower levels than do their peers. Nurses can play a key role in helping to promote such behaviors, but do so sparingly. The purpose of this study is to examine the degree to which nurses recommend physical activity to people with autism spectrum disorder. Even though a number of scholars have examined the role of health professionals in promoting physical activity, comparatively little research has examined nurses. Further, previous scholars have largely focused on the promotion of physical activity to patients in general. However, people with disabilities and people with autism spectrum disorder, specifically, are frequently overlooked when it comes to physical activity promotion. Data were collected from a representative sample of nurses (n = 180) working in the United States. Results indicate that nurses were only moderately likely to recommend physical activity. When perceived barriers were low, perceived benefits held a positive, significant association with recommendations. However, when perceived barriers were high, the relationship between perceived benefits and recommendations was no longer significant. Analysis of qualitative data showed the value nurses place on physical activity, how they interpret barriers and benefits, and strategies for making physical activity inclusive for people with autism spectrum disorder. In conclusion, nurses have an opportunity to more frequently promote physical activity to their patients with autism spectrum disorder and, in doing so, help mitigate some of the poor health outcomes people with autism spectrum disorder experience. The authors identified implications for nursing education and professional development, as well as for sport and recreation managers charged with delivering physical activity to people with autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-11-28T05:06:29Z
      DOI: 10.1177/1362361320970082
       
  • Difference in default mode network subsystems in autism across childhood
           and adolescence
    • Authors: Joe Bathelt, Hilde M Geurts
      Abstract: Autism, Ahead of Print.
      Differences in the default mode network are among the most replicated brain-level findings in autistic individuals. Furthermore, subregions within the default mode network are associated with cognitive functions such as mentalising that are immediately relevant to cognitive theories of autism. Recent evidence suggests that the default mode network comprises partially independent subsystems that are tied to dissociable cognitive processes, specifically a medial temporal lobe subsystem involved in memory retrieval, a dorsal medial prefrontal cortex subsystem involved in social processing and a posterior cingulate cortex – anterior medial prefrontal cortex system that ties the other subsystems together. This modular organisation is thought to arise in childhood development. The current analysis investigated differences in default mode network subsystems in 193 autistic boys and young men (5–18 years) and in a group of 208 age-matched boys and young men without a diagnosis using resting-state functional magnetic resonance imaging from the data repository of the Autism Brain Imaging Data Exchange. The results indicated a developmental trend towards greater modularisation of the default mode network across childhood and adolescence in autism, mostly driven by reduced between-subnetwork connection strength. In contrast, default mode network subnetwork organisation was relatively stable in the comparison group. We suggest that these differences reflect delayed maturation of the default mode network in autism.Lay abstractNeuroimaging research has identified a network of brain regions that are more active when we daydream compared to when we are engaged in a task. This network has been named the default mode network. Furthermore, differences in the default mode network are the most consistent findings in neuroimaging research in autism. Recent studies suggest that the default mode network is composed of subnetworks that are tied to different functions, namely memory and understanding others’ minds. In this study, we investigated if default mode network differences in autism are related to specific subnetworks of the default mode network and if these differences change across childhood and adolescence. Our results suggest that the subnetworks of the default mode network are less differentiated in autism in middle childhood compared to neurotypicals. By late adolescence, the default mode network subnetwork organisation was similar in the autistic and neurotypical groups. These findings provide a foundation for future studies to investigate if this developmental pattern relates to improvements in the integration of memory and social understanding as autistic children grow up.
      Citation: Autism
      PubDate: 2020-11-28T05:06:10Z
      DOI: 10.1177/1362361320969258
       
  • Short report: Development and utility of the Family-Centered Autism
           Navigation interview
    • Authors: Kris Pizur-Barnekow, Amy C Lang, Brian Barger
      Abstract: Autism, Ahead of Print.
      Navigating various systems, resources, and supports available for families of children with autism spectrum disorder is challenging. Family navigation is a potentially important support system for families of children with autism spectrum disorder. Family navigators are professionals who engage with families to enhance access to early identification and intervention services via shared navigation plans that help meet the family’s priorities and goals when navigating systems of support. Systematic processes and tools facilitating the development of a shared navigation plan with families following diagnosis are currently limited. This short report describes product development of the Family-Centered Autism Navigation using quality improvement methods including Lean Launch and qualitative methodology.Lay abstractWhen a parent learns of their child’s autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver’s needs to coordinate and navigate systems of care after learning of their child’s autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation interview are to (1) identify family and child strengths; (2) identify family/caregiver concerns regarding navigation of services and systems following their child’s diagnosis of autism; (3) measure change in caregiver knowledge, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews (n = 42), expert feedback (n = 13), and quality improvement strategies (n = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.
      Citation: Autism
      PubDate: 2020-11-26T05:25:38Z
      DOI: 10.1177/1362361320972890
       
  • Development and implementation of health care transition resources for
           youth with autism spectrum disorders within a primary care medical home
    • Authors: Jill F Harris, Leigh P Gorman, Aditi Doshi, Shannon Swope, Shayleigh D Page
      Abstract: Autism, Ahead of Print.
      Transition from pediatric to adult health care systems presents unique challenges for adolescents with autism spectrum disorder who often have complex medical and mental health needs. Without a coordinated transition plan, pediatric providers often continue to provide care to young adults with autism spectrum disorder beyond the scope of their medical training. Adult providers may be unwilling and untrained to accept care for young adults with autism spectrum disorder. This quality improvement study identified baseline transition-related practices within a pediatric medical home practice and developed a model to promote transition to adult heath care for patients with autism spectrum disorder. Participants were 251 patients with autism spectrum disorder aged 12–21 years. Baseline data revealed limited and inconsistent communication directed to patients and families regarding transition. An evidence-based and replicable transition checklist, templated documentation, and resources geared to patients aged 12–21 years were developed. While improvement was noted in number of visits addressing transition, medical providers skipped or deferred transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to defer to social work to address transition, and difficulty identifying adult providers with whom to collaborate regarding care needs.Lay abstractAs adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions.
      Citation: Autism
      PubDate: 2020-11-26T05:25:18Z
      DOI: 10.1177/1362361320974491
       
  • Evaluating the effects of a yoga-based program integrated with third-wave
           cognitive behavioral therapy components on self-regulation in children on
           the autism spectrum: A pilot randomized controlled trial
    • Authors: Radhika Tanksale, Kate Sofronoff, Jeanie Sheffield, John Gilmour
      Abstract: Autism, Ahead of Print.
      Research using mind–body practices in autism is limited but suggests a trend for ruminative reduction and improved behavioral–emotional outcomes. Following random assignment (N = 67), effects of a weekly six-session pilot yoga-based group program combined with third-wave cognitive behavioral therapy elements on self-regulation for children on the autism spectrum (aged 8–12 years) was assessed. The primary outcome was executive functions. Secondary outcomes were sleep, anxiety, and emotion awareness. After attrition, assessment results from participants in the intervention (n = 31) and the waitlist conditions (n = 30) completed at baseline, post-intervention, and 6-week follow-up were evaluated. For the intervention group, the between-group mean score differences suggest a decrease in parent-reported global executive difficulties from baseline to post-intervention (−2.61; 95% confidence interval −5.13 to −0.09, p = 0.047, d = −0.39) and baseline to follow-up (−4.17; 95% confidence interval −6.72 to −1.62, p = 0.017, d = −0.59) with small-to-medium effect sizes. Small-to-medium effects were found for a few parent-reported children’s sleep issues, child-reported aspects of emotion awareness, and performance anxiety. Non-significant findings are discussed in this article. Preliminary findings suggest mixed results and should be interpreted cautiously. The yoga-informed program may complement existing treatments and will benefit from ongoing evaluation.Lay abstractChildren on the autism spectrum may experience difficulties with the regulation of attention, thoughts, emotions, and behavior, understanding, and expressing their emotions appropriately, as well as anxiety, and sleep. In autism research, contemplative practices that work through both body and mind have shown tentatively promising results. However, there are limited studies on this topic, and the use of yoga to facilitate executive control has not been researched yet. The Incredible Explorers (6-week program), a yoga-informed intervention program for children (8–12 years), was developed to understand whether, for children on the autism spectrum, the training could improve the ability to self-regulate, reduce anxiety and sleep problems, and increase awareness of emotions. In our sample, 61 children with one of their parents completed the program. Half of the group received the intervention, and the other half had to wait until the yoga group completed their trial. The participants were asked to give their feedback immediately after program completion and at 6-week follow-up. Compared to the group that was waiting to receive the intervention, parents in the yoga group reported significant gains for their children in regulating their overall executive control immediately after the session and again at follow-up. The parents reported a reduction in some of the sleep problems post-treatment. Children indicated an improved ability to communicate their feelings and willingness to analyze their emotions post-intervention. However, the study had several shortcomings and given that this was the first trial of the program, the results need to be interpreted with caution. Further research is recommended.
      Citation: Autism
      PubDate: 2020-11-26T05:24:38Z
      DOI: 10.1177/1362361320974841
       
  • Age at autism spectrum disorder diagnosis: A systematic review and
           meta-analysis from 2012 to 2019
    • Authors: Maarten van ’t Hof, Chanel Tisseur, Ina van Berckelear-Onnes, Annemyn van Nieuwenhuyzen, Amy M Daniels, Mathijs Deen, Hans W Hoek, Wietske A Ester
      Abstract: Autism, Ahead of Print.
      Between 1990 and 2012, the global mean age at diagnosis of autism spectrum disorder ranged from 38 to 120 months. Measures have since been introduced to reduce the age at autism spectrum disorder diagnosis, but the current global mean age is unknown. This review and meta-analysis report the average age at diagnosis from studies published between 2012 and 2019. We initially identified 1150 articles, including 56 studies that reported the mean or median age at diagnosis across 40 countries (n = 120,540 individuals with autism spectrum disorder). Meta-analysis results (on 35 studies, including 55 cohorts from 35 countries, n = 66,966 individuals with autism spectrum disorder) found a current mean age at diagnosis of 60.48 months (range: 30.90–234.57 months). The subgroup analysis for studies that only included children aged ⩽10 years (nine studies, including 26 cohorts from 23 countries, n = 18,134 children with autism spectrum disorder) showed a mean age at diagnosis of 43.18 months (range: 30.90–74.70 months). Numerous factors may influence age at diagnosis and were reported by 46 studies, often with conflicting or inconclusive findings. Our study is the first to ascertain the global average age at autism spectrum disorder diagnosis from a meta-analysis. Continued efforts to lower the average age at autism spectrum disorder diagnosis are needed.Lay abstractWe currently assume that the global mean age at diagnosis of autism spectrum disorder ranges from 38 to 120 months. However, this range is based on studies from 1991 to 2012 and measures have since been introduced to reduce the age at autism spectrum disorder diagnosis. We performed a systematic review and meta-analysis (statistical analysis that combines the results of multiple scientific studies) for studies published between 2012 and 2019 to evaluate the current age at autism spectrum disorder diagnosis. We included 56 studies that reported the age at diagnosis for 40 countries (containing 120,540 individuals with autism spectrum disorder). Results showed the current mean age at diagnosis to be 60.48 months (range: 30.90–234.57 months) and 43.18 months (range: 30.90–74.70 months) for studies that only included children aged ⩽10 years. Numerous factors that may influence age at diagnosis (e.g. type of autism spectrum disorder diagnosis, additional diagnoses and gender) were reported by 46 studies, often with conflicting or inconclusive results. Our study is the first to determine the global average age at autism spectrum disorder diagnosis from a meta-analysis. Although progress is being made in the earlier detection of autism spectrum disorder, it requires our constant attention.
      Citation: Autism
      PubDate: 2020-11-20T05:56:12Z
      DOI: 10.1177/1362361320971107
       
  • Autism spectrum disorder screening in preschools
    • Authors: Angel Hoe-chi Au, Kathy Kar-man Shum, Yongtian Cheng, Hannah Man-yan Tse, Rose Mui-fong Wong, Johnson Li, Terry Kit-fong Au
      Abstract: Autism, Ahead of Print.
      Can non-clinicians spot preschoolers likely to have autism spectrum disorder by observing their everyday peer interaction' We set out to develop a screening tool that capitalizes on peer interaction as a naturalistic “stress test” to identify children more likely than their peers to have autism spectrum disorder. A total of 304 3- to 4-year-olds were observed at school with an 84-item preliminary checklist; data-driven item reduction yielded a 13-item Classroom Observation Scale. The Classroom Observation Scale scores correlated significantly with Autism Diagnostic Observation Schedule–2 scores. To validate the scale, another 322 2- to 4-year-olds were screened using the Classroom Observation Scale. The screen-positive children and randomly selected typically developing peers were assessed for autism spectrum disorder 1.5 years later. The Classroom Observation Scale as used by teachers and researchers near preschool onset predicted autism spectrum disorder diagnoses 1.5 years later (odds ratios = 14.6 and 6.7, respectively). This user-friendly 13-item Classroom Observation Scale enables teachers and healthcare workers with little or no clinical training to identify, with reliable and valid results, preschoolers more likely than their peers to have autism spectrum disorder.Lay abstractWith professional training and regular opportunities to observe children interacting with their peers, preschool teachers are in a good position to notice children’s autism spectrum disorder symptomatology. Yet even when a preschool teacher suspects that a child may have autism spectrum disorder, fear of false alarm may hold the teacher back from alerting the parents, let alone suggesting them to consider clinical assessment for the child. A valid and convenient screening tool can help preschool teachers make more informed and hence more confident judgment. We set out to develop a screening tool that capitalizes on peer interaction as a naturalistic “stress test” to identify children more likely than their peers to have autism spectrum disorder. A total of 304 3- to 4-year-olds were observed at school with an 84-item preliminary checklist; data-driven item reduction yielded a 13-item Classroom Observation Scale. The Classroom Observation Scale scores correlated significantly with Autism Diagnostic Observation Schedule–2 scores. To validate the scale, another 322 2- to 4-year-olds were screened using the Classroom Observation Scale. The screen-positive children and randomly selected typically developing peers were assessed for autism spectrum disorder 1.5 years later. The Classroom Observation Scale as used by teachers and researchers near preschool onset predicted autism spectrum disorder diagnoses 1.5 years later. This user-friendly 13-item Classroom Observation Scale enables teachers and healthcare workers with little or no clinical training to identify, with reliable and valid results, preschoolers more likely than their peers to have autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-11-06T07:32:51Z
      DOI: 10.1177/1362361320967529
       
  • Emotional self-awareness in autism: A meta-analysis of group differences
           and developmental effects
    • Authors: Charlotte F Huggins, Gemma Donnan, Isobel M Cameron, Justin HG Williams
      Abstract: Autism, Ahead of Print.
      Emotional self-awareness is increasingly suggested to be an area of difficulty in autism that may predict socioemotional outcomes for this population. However, whether emotional self-awareness is consistently diminished in autism across age and methodology remains unclear. We systematically reviewed 47 papers measuring emotional self-awareness in autistic (n = 1387) and non-autistic (n = 1433) participants. Most studies relied on self-report. Of studies testing for group differences, the majority (32/41) found significantly poorer emotional self-awareness in autism. Meta-analyses of self-report measures found that emotional self-awareness was significantly poorer in autism (d = 1.16). However, when examining age groups individually, autistic children of age 12 years and under were not significantly different from their peers (d = 0.03). Instead, difficulties emerged during adolescence (d = 0.63) and increased with age (d = 1.16 – 1.58). The pattern of emotional self-awareness difficulties being more common in autism, and worsening with age is similar to the development of mental health difficulties in autism. However, findings rely on self-perception and so may reflect poor self-beliefs of socioemotional competence. We propose that negative self-beliefs in autistic populations may account for findings of low emotional self-awareness.Lay abstractAutistic people are thought to have difficulties with identifying and understanding their own emotions. This is referred to as emotional self-awareness. It is important to study emotional self-awareness as people who are more able to understand their own emotions, whether they are autistic or not, are more able to respond to them appropriately, as well as to identify them in other people. It has not yet been confirmed whether autistic people have difficulties with emotional self-awareness, or if any reported difficulties are actually due to the way in which emotional self-awareness is measured in autistic people. If these difficulties do exist, it is also not known when these difficulties emerge. In this research, we reviewed 47 existing studies that measured emotional self-awareness in autistic and non-autistic adults and children. We also compared studies that measured emotional self-awareness in different ways. We found that autistic adults did seem to have poorer emotional self-awareness compared to their neurotypical peers. However, this was not the case with autistic children of age 12 years and below. Instead, differences in emotional self-awareness only seemed to emerge during adolescence. Moreover, these difficulties seemed to increase with age. These results suggest that difficulties with emotional self-awareness may not be inherent in autism. Instead, they may emerge alongside the greater social and mental health difficulties that are experienced by many autistic people during adolescence. We therefore suggest that it is important to find out more about, and subsequently support, the emotional self-awareness difficulties that autistic adolescents may encounter.
      Citation: Autism
      PubDate: 2020-11-06T07:32:32Z
      DOI: 10.1177/1362361320964306
       
  • Autism and Williams syndrome: Dissimilar socio-cognitive profiles with
           similar patterns of abnormal gene expression in the blood
    • Authors: Amy Niego, Antonio Benítez-Burraco
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorders and Williams syndrome exhibit quite opposite features in the social domain, but also share some common underlying behavioral and cognitive deficits. It is not clear, however, which genes account for the attested differences (and similarities) in the socio-cognitive domain. In this article, we adopted a comparative molecular approach and looked for genes that might be differentially (or similarly) regulated in the blood of subjects with these two conditions. We found a significant overlap between differentially expressed genes compared to neurotypical controls, with most of them exhibiting a similar trend in both conditions, but with genes being more dysregulated in Williams syndrome than in autism spectrum disorders. These genes are involved in aspects of brain development and function (particularly dendritogenesis) and are expressed in brain areas (particularly the cerebellum, the thalamus, and the striatum) of relevance for the autism spectrum disorder and the Williams syndrome etiopathogenesis.Lay abstractAutism spectrum disorders and Williams syndrome are complex cognitive conditions exhibiting quite opposite features in the social domain: whereas people with autism spectrum disorders are mostly hyposocial, subjects with Williams syndrome are usually reported as hypersocial. At the same time, autism spectrum disorders and Williams syndrome share some common underlying behavioral and cognitive deficits. It is not clear, however, which genes account for the attested differences (and similarities) in the socio-cognitive domain. In this article, we adopted a comparative molecular approach and looked for genes that might be differentially (or similarly) regulated in the blood of people with these conditions. We found a significant overlap between genes dysregulated in the blood of patients compared to neurotypical controls, with most of them being upregulated or, in some cases, downregulated. Still, genes with similar expression trends can exhibit quantitative differences between conditions, with most of them being more dysregulated in Williams syndrome than in autism spectrum disorders. Differentially expressed genes are involved in aspects of brain development and function (particularly dendritogenesis) and are expressed in brain areas (particularly the cerebellum, the thalamus, and the striatum) of relevance for the autism spectrum disorder and the Williams syndrome etiopathogenesis. Overall, these genes emerge as promising candidates for the similarities and differences between the autism spectrum disorder and the Williams syndrome socio-cognitive profiles.
      Citation: Autism
      PubDate: 2020-11-04T05:05:35Z
      DOI: 10.1177/1362361320965074
       
  • Research priorities of the autism community: A systematic review of key
           stakeholder perspectives
    • Authors: Laura Roche, Dawn Adams, Megan Clark
      Abstract: Autism, Ahead of Print.
      In recent years, a shift in focus has seen researchers seek to identify the priorities and preferences of key stakeholders to shape the direction of future research for those on the autism spectrum. The process of synthesising the views, knowledge and expertise of key stakeholders with either a lived or shared experience of autism is invaluable and can inform future research to ensure that it is meaningful and has the greatest impact. A number of studies have reported on the research priorities of groups within the autism community, but to date, these studies stand alone and priorities have not been considered collectively. This systematic review identified seven studies that reported on key stakeholders’ priorities for autism research. Studies were synthesised according to (a) the target participant group and method of recruitment, (b) the methodology used to elucidate the viewpoint of stakeholders, (c) the country of stakeholders and (d) commonly identified priorities. Common features across studies note the importance of prioritising initiatives that will result in real-world changes in the lives of the autism community and more research across the lifespan. There is an identified need for more diverse stakeholder voices to influence the identification of priorities for future research foci. Continued inclusion of the autistic and autism communities in priority-setting research is imperative for achieving significant outcomes in autism research and to progress the field in an effective and socio-ethical way.Lay abstractIt has become very important in autism research to ask the autistic community about what kinds of research they think should be done in order to improve the lives of people with autism. Many studies have reported on research goals from people within the autism community, such as parents of people on the autism spectrum, and practitioners and clinicians who support people on the autism spectrum. So far, the research goals from all of these studies have not been considered together, which is important so that all autism research can be working towards the same goals. We reviewed seven studies that looked at the priorities for autism research from key people within the autism community. Each of the reviewed studies are described according to (a) the types of people involved in the study, (b) the way the research goals from each group of people were identified, (c) the country where they were from and (d) the most common research goals from across all of the studies. Within these seven studies, research that will lead to real-world changes in the daily lives of the autism community and a greater focus on skill training for people with autism across their lives were found to be very important. From this review, we found that it is also very important to include a range of different people from the autism community when deciding what autism research goals should be focused on so that future research can be more helpful for the autism community.
      Citation: Autism
      PubDate: 2020-11-04T05:05:15Z
      DOI: 10.1177/1362361320967790
       
  • Developmental associations between joint engagement and autistic
           children’s vocabulary: A cross-lagged panel analysis
    • Authors: Kristen Bottema-Beutel, So Yoon Kim, Shannon Crowley, Paul J Yoder
      Abstract: Autism, Ahead of Print.
      Cross-lagged panel analysis was used to examine associations between two joint engagement variables; higher order supported joint engagement and higher order supported joint engagement that co-occurs with caregiver’s follow-in talk (higher order supported joint engagement + follow-in), and expressive and receptive vocabulary in a group of young autistic children (n = 91) with language delay (mean chronological age = 39 months). Variables were measured twice, 8 months apart. Coefficients for cross-lagged variable pairs were derived from structural equation models. Early higher order supported joint engagement was significantly associated with later expressive and receptive vocabulary (bs = 0.18 and 0.26, respectively), and early higher order supported joint engagement + follow-in was significantly associated with later expressive and receptive vocabulary (bs = 0.14 and 0.15, respectively). Associations between early vocabulary and later joint engagement were not significant. Linear contrasts between cross-lagged associations did not show a significantly superior association for any early joint engagement variables and later vocabulary variables. However, our results suggest that higher order supported joint engagement and higher order supported joint engagement + follow-in may be useful initial intervention targets for developmental interventions aimed at promoting autistic children’s language development who are initially language delayed.Lay abstractIn this study, we used a cross-lagged panel analysis to examine correlations over time between two types of engagement between children and their parents and children’s later expressive and receptive vocabularies. This kind of design can help researchers understand which early developmental achievements “drive” later developmental achievements. It is important for intervention researchers to know which developmental achievements happen first, so that they can set intervention goals appropriately. The two joint engagement variables we examined were (a) higher order supported joint engagement, which occurs when caregivers influence their child’s play with toys and the child reciprocally responds to the caregiver, but does not manage the interaction by shifting gaze between the toys and the caregiver, and (b) higher order supported joint engagement that co-occurs with caregiver’s follow-in talk (higher order supported joint engagement + follow-in). Follow-in talk occurs when the caregiver talks about objects and events that the child is focused on. Ninety-one autistic children (n = 91) with language delay (mean chronological age = 39 months) participated, along with their primary caregivers. Each of the four variables was measured twice, 8 months apart. Our statistical procedures showed that early higher order supported joint engagement and early higher order supported joint engagement + follow-in were significantly associated with later expressive and receptive vocabulary. In contrast, associations between early vocabulary variables and later joint engagement variables were not significant. Our results suggest that higher order supported joint engagement and higher order supported joint engagement + follow-in may be useful initial intervention targets, for developmental interventions aimed at promoting language development in autistic children who are initially language delayed.
      Citation: Autism
      PubDate: 2020-11-04T05:04:55Z
      DOI: 10.1177/1362361320968641
       
  • To reduce the average age of autism diagnosis, screen preschoolers in
           primary care
    • Authors: Katharine E Zuckerman, Sarabeth Broder-Fingert, R Christopher Sheldrick
      Abstract: Autism, Ahead of Print.
      The American Academy of Pediatrics recommends autism spectrum disorder screening at the 18- and 24-month well-child visits. However, despite widespread toddler screening, many children are not diagnosed until school age, and delayed diagnosis is more common among low-income and minority children. Offering autism spectrum disorder screening at preschool well-child checks might reduce disparities and lower the overall age of diagnosis and service initiation. However, screening tools that span the preschool ages and are tailored for primary care are needed.Lay abstractPediatric primary care providers check for autism signs, usually using a standard checklist, at 18- and 24-month well-child visits. When the checklist shows possible autism, children should be referred for additional treatment and evaluation with an autism specialist. However, many children with autism spectrum disorder are not detected as toddlers. Low-income and minority children are particularly likely to have a late autism spectrum disorder diagnosis. Checking for autism at preschool-aged well-child visits might be one way to identify autism spectrum disorder earlier, especially for low-income and minority children.
      Citation: Autism
      PubDate: 2020-10-31T05:06:01Z
      DOI: 10.1177/1362361320968974
       
  • The role of loneliness as a mediator between autism features and mental
           health among autistic young adults
    • Authors: Hillary K Schiltz, Alana J McVey, Bridget Dolan Wozniak, Angela D Haendel, Rachel Stanley, Alexis Arias, Nakia Gordon, Amy Vaughan Van Hecke
      Abstract: Autism, Ahead of Print.
      Autistic adults commonly experience anxiety and depression. These mental health concerns are often tied to social experiences, such that mental well-being can be supported by social connection and deteriorated by loneliness. The mediating role of social and emotional loneliness (i.e. social isolation and lack of emotional attachment, respectively) between autism features and mental health has yet to be empirically tested among autistic adults. Here, 69 autistic young adults completed self-report questionnaires assessing social contact (Friendship Questionnaire), autism features (Autism Quotient), mental health (Liebowitz Social Anxiety Scale, Social Phobia Inventory, Beck Depression Inventory), and loneliness (Social and Emotional Loneliness Scale for Adults). Positive associations emerged between autism features, social loneliness, family loneliness, social anxiety, and depression. In addition, more social contact was related to less social and family loneliness and less social anxiety but was not related to depression. Mediation analyses indicated significant indirect effects of social contact and autism features on mental health through social loneliness. Indirect effects partially held substituting family loneliness for social loneliness and did not hold using romantic loneliness. In light of these results, the scientific and clinical implications of the role of loneliness for autistic young adults are discussed and recommendations provided.Lay abstractAutistic adults commonly experience mental health concerns including social anxiety and depression, which can have negative effects on their quality of life. It is not completely clear, however, why rates of mental health concerns are so high. Some evidence suggests that social connectedness might play a key role. The goal of this study was to explore links between loneliness, mental health concerns, autism features, and social contact among autistic adults and test whether the links between mental health with autism features and social contact can be explained by loneliness. Researchers in this study collected data using questionnaires completed by 69 autistic young adults. Autistic adults who reported more autism features also reported more social and family loneliness, higher levels of social anxiety and depression, and fewer initiated social contacts. In addition, adults with more social contact initiations were likely to report lower levels of social and family loneliness and social anxiety but not depression. Results showed that the link from social engagement and autism features to social anxiety and depression symptoms could be mostly explained by loneliness. The results of this study expand previous findings by illustrating one factor (loneliness) that might be responsible for the high rates of mental health concerns among adults on the autism spectrum. These findings highlight the importance of studying factors related to mental health concerns among autistic adults and ways to best support social connectedness for the mental well-being of autistic young adults.
      Citation: Autism
      PubDate: 2020-10-31T05:05:29Z
      DOI: 10.1177/1362361320967789
       
  • Insomnia subtypes and clinical impairment in hospitalized children with
           autism spectrum disorder
    • Authors: Briana J Taylor, Charles F Reynolds, Matthew Siegel
      Abstract: Autism, Ahead of Print.
      Insomnia subtypes have not been characterized in severely affected youth with autism spectrum disorder. We examined indices of clinical impairment (i.e. length of hospital stay, autism severity, nonverbal intelligence quotient, and adaptive and maladaptive behaviors) across insomnia subtypes in 427 psychiatrically hospitalized children with autism spectrum disorder (mean age = 12.8 ± 3.4; 81.3% male). Multivariate analysis with Bonferroni adjustment tested for differences in clinical impairment across insomnia subtypes adjusting for age and sex. Per parent report, 60% (n = 257) of children had at least one form of insomnia. The distribution of subtypes was sleep onset (26.1%, n = 67), sleep maintenance (24.9%, n = 64), early morning waking (4.3%, n = 11), and combined (44.7%, n = 115). There was a significant multivariate effect of insomnia subtypes on clinical impairment (Pillai’s Trace = 0.25, F = 2.78, p < 0.001). Sleep maintenance and early morning waking were associated with longer hospital stays. Early morning waking was also associated with greater autism symptom severity. In general, children with sleep-maintenance or combined insomnias scored lower on adaptive behaviors and higher on maladaptive behaviors. Sleep-maintenance and combined insomnias appear to be more indicative of or consequential for impaired behavioral functioning.Lay abstractInsomnia subtypes are not well understood in the most severely affected children with autism spectrum disorder. We examined length of hospital stay, autism severity, nonverbal intelligence quotient, and behavioral functioning across insomnia subtypes in 427 psychiatrically hospitalized children with autism spectrum disorder (mean age = 12.8 ± 3.4; 81.3% male). Per parent report, 60% (n = 257) of children had at least one type of insomnia. The distribution of subtypes was difficulty falling asleep (26.1%, n = 67), difficulty staying asleep (24.9%, n = 64), early morning awakening (4.3%, n = 11), and multiple insomnia symptoms (44.7%, n = 115). Difficulty staying asleep and early morning awakenings were associated with longer hospital stays. Early morning awakening was also associated with higher autism symptom severity. In general, children with difficulty staying asleep or multiple insomnia symptoms scored lower on adaptive behaviors (e.g. communication, self-care, socialization) and higher on maladaptive behaviors (e.g. irritability, hyperactivity, emotional reactivity, and emotional dysphoria). Difficulty staying asleep or having multiple insomnia symptoms appears to be most strongly related to impaired behavioral functioning. Conversely, early morning awakenings may be more closely tied with autism spectrum disorder itself. Further research is needed regarding insomnia subtypes at the severe end of the autism spectrum.
      Citation: Autism
      PubDate: 2020-10-27T05:02:45Z
      DOI: 10.1177/1362361320967524
       
  • Self-compassion as a mediator of the association between autistic traits
           and depressive/anxious symptomatology
    • Authors: John Galvin, Abby Howes, Bethany McCarthy, Gareth Richards
      Abstract: Autism, Ahead of Print.
      Self-compassion refers to the extension of kindness to oneself when faced with inadequacies, shortcomings or failures. This study examined the mediating role of self-compassion in the relationship between autistic traits and depressive/anxious symptomatology in the general population. Participants included 164 university students (69 males and 95 females) ranging in age from 18 to 51 years (mean = 23.16, standard deviation = 7.81). Participants completed the Autism Spectrum Quotient, the Self-Compassion Scale, and the Hospital Anxiety and Depression Scale. A series of multiple mediation analyses was conducted using the bootstrapping method, and it was found that Total Self-Compassion and the two subscales of Compassionate Self-Responding and Uncompassionate Self-Responding partially mediated the relationship between autistic traits and anxious/depressive symptoms. The indirect effect of self-compassion accounted for 41.9% of the variance in the relationship between autistic traits and depressive symptoms and 50% of the variance in the relationship between autistic traits and anxiety symptoms. It was also further found that the correlation between autistic traits and self-compassion was significantly stronger in males than females. Although preliminary, the current findings suggest that self-compassion could potentially serve as a target for clinical intervention in individuals with elevated autistic traits who experience anxiety and/or depression.Lay AbstractIn this study, we asked 164 undergraduate students to complete an online questionnaire. The questionnaire measured the students’ levels of autistic traits, self-compassion, and experience of anxiety and depression. We were interested in knowing if self-compassion (defined as the extension of kindness to oneself when faced with challenges) had any influence on the relationship between autistic traits and experiences of anxiety and depression. The results of the study indicated that self-compassion may be an important factor influencing the relationship between autistic traits and mental health, with higher levels of self-compassion being related to more positive mental health outcomes. Although the findings should be considered preliminary in nature, they do suggest that self-compassion could potentially be a target for clinical intervention in people with elevated autistic traits and experience anxiety and/or depression.
      Citation: Autism
      PubDate: 2020-10-27T05:02:26Z
      DOI: 10.1177/1362361320966853
       
  • Satisfaction with informal supports predicts resilience in families of
           children with autism spectrum disorder
    • Authors: Vanessa Fong, Emily Gardiner, Grace Iarocci
      Abstract: Autism, Ahead of Print.
      The current study examined the role of informal supports in predicting resilience among families of children with autism spectrum disorder. Participants included 153 caregivers of children with autism spectrum disorder, who were between the ages of 2 and 18 years (M = 10.45; SD = 4.32). Caregivers completed a measure of satisfaction with informal supports as well as the Family Resilience Assessment Scale-autism spectrum disorder. After controlling for demographic factors and child behavioural problems, regression analyses revealed that satisfaction with informal supports significantly predicted family resilience. The findings highlight the importance of specifically strengthening informal support networks when providing services and interventions to families of children with autism spectrum disorder to foster the family’s resilience.Lay abstractThe study of resilience among individuals with disabilities and their families represents a paradigmatic shift from a deficits orientation towards a more holistic and contextualized approach focused on strength and adaptation. The current study investigated whether informal supports could help improve families’ capacity for resilience. We recruited 153 caregivers of children aged between 2 and 18 years who all had a diagnosis of autism. Participants were asked to complete surveys assessing resilience in their families as well as their satisfaction with informal supports (e.g. friends and family). Families more likely to report higher satisfaction with their informal support networks demonstrate greater resilience. The results suggest that informal social supports are a valuable resource for families in strengthening their capacity for resilience. The findings may help inform the development of interventions and services that work collaboratively and innovatively with families and their social networks to provide assistance and support in meaningful and effective ways.
      Citation: Autism
      PubDate: 2020-10-27T05:01:46Z
      DOI: 10.1177/1362361320962677
       
  • Psychometric testing of a set of patient-reported instruments to assess
           healthcare interventions for autistic adults
    • Authors: Christina Nicolaidis, Kelly Y Zhen, Junghee Lee, Dora M Raymaker, Steven K Kapp, Lisa A Croen, Anna Urbanowicz, Joelle Maslak, Mirah Scharer
      Abstract: Autism, Ahead of Print.
      There is a growing recognition of the need for interventions to improve the healthcare of autistic adults. However, there is a dearth of validated measures to evaluate such interventions. Our objectives were to use a community-based participatory research approach to create an accessible set of patient- and proxy-reported instruments to measure healthcare outcomes and potential intervention targets in autistic adults and to assess the instruments’ psychometric characteristics, including content validity, construct validity, and internal consistency reliability. We administered a survey to 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (194 participating directly and 50 participating via a proxy reporter). Community partners ensured items were easy to understand and captured the intended construct. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Visit Preparedness Scale, Healthcare Accommodations Scale, and Patient–Provider Communication Scale were each found to have a single factor. The AASPIRE Health and Healthcare Self-Efficacy Scale had two factors: Individual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy. Both patient- and proxy-reported versions of all scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales were associated with the Barriers to Healthcare Checklist and the Unmet Healthcare Needs Checklist in the hypothesized directions.Lay AbstractInterventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient–provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults.
      Citation: Autism
      PubDate: 2020-10-26T06:30:13Z
      DOI: 10.1177/1362361320967178
       
  • Performance of the Autism Observation Scale for Infants with
           community-ascertained infants showing early signs of autism
    • Authors: Kristelle Hudry, Lacey Chetcuti, Maryam Boutrus, Sarah Pillar, Emma K Baker, Stefanie Dimov, Josephine Barbaro, Jonathan Green, Andrew JO Whitehouse, Kandice J Varcin
      Abstract: Autism, Ahead of Print.
      Often included within ‘high-risk sibling’ studies, the Autism Observation Scale for Infants (AOSI) has only one independent replication study and no evaluation with community-ascertained cohorts. We administered the AOSI and established clinical measures with 103 infants (68% male) at ‘high autism likelihood’ on the Social Attention and Communication Surveillance - Revised (SACS-R) tool, at 9–14 months of age and again 6 months later. AOSI Total scores showed adequate internal consistency and strong inter-rater agreement (live- or video-coded) and were approximately normally distributed at each visit. Modest significant associations presented between Time 1 AOSI scores and concurrent developmental/adaptive skills measures. Concurrent associations were stronger at Time 2, particularly between AOSI Total and Autism Diagnostic Observation Schedule (ADOS) Social Affect scores. AOSI scores were only moderately associated across Time 1 and 2 assessments, as were Time 1 AOSI with Time 2 ADOS scores. These data from a clinically indicated cohort broadly replicate previous AOSI validity accounts from ‘high-risk sibling’ studies, particularly beyond the first year. Strong inter-rater agreement indicates viable AOSI inclusion within protocols necessitating blinded evaluation (e.g. intervention trials). Moderate within-participant stability suggests that, like ‘high-risk siblings,’ community-ascertained infants experience variable early trajectories.Lay AbstractWe investigated whether a commonly used research assessment – the Autism Observation Scale for Infants (AOSI) – accurately measures autism behaviours among infants showing early signs of autism identified within the community. The AOSI is often included in studies tracking the development of infants at increased likelihood of autism, such as the infant siblings of diagnosed children. However, the suitability of this measure has not previously been tested with community-referred infants. We administered the AOSI with infants when aged 9 to 14 months and again 6 months later. Our researchers – independent of the AOSI development team and newly trained on this measure – were able to administer the brief interactive assessment and score it accurately. The infants’ AOSI scores were linked to their scores on other established and validated clinical assessments, particularly at the second visit when average age was 18 months. Stronger correspondence of AOSI and other scores at this second visit suggests early autism behaviours are better established and more consistent by 18 months of age, even though these infants showed clear enough signs of possible autism to prompt referral to our study around 12 months of age. However, the moderate association of AOSI scores over time suggests that, like infant siblings – who mostly do not develop autism – community-identified infants showing early signs may also have variable developmental pathways in early life.
      Citation: Autism
      PubDate: 2020-10-23T06:38:53Z
      DOI: 10.1177/1362361320965397
       
  • Depressive symptoms of autism spectrum disorder children’s siblings in
           Greece: Associations with parental anxiety and social support
    • Authors: Evangelia Koukouriki, Sryridon-Georgios Soulis, Elias Andreoulakis
      Abstract: Autism, Ahead of Print.
      Previous research has shown elevated levels of depressive symptoms in typically developing siblings of children with autism spectrum disorders. The current study investigates for associations between the depressive symptoms of school-aged typically developing siblings of children with autism and parental mental health, perceived social support as well as demographic factors. Eighty-five Greek typically developing siblings of autistic children and their parents provided information concerning children’s depressive symptoms (assessed with the Children’s Depression Inventory), demographics, parent mental health status (assessed with the General Health Questionnaire-28), and perceived social support (assessed with the Multidimensional Scale of Perceived Social Support). Typically developing siblings showed higher levels of depressive symptoms compared to normative data. The hierarchical multiple regressions performed showed that typically developing siblings’ depressive symptoms were significantly associated with parental anxiety and perceived social support from the family. Of note, parental anxiety remained associated with typically developing siblings’ depressive symptoms independent of perceived social support. These findings demonstrate a direct link between typically developing siblings’ psychopathological symptoms and those of their parents and highlight the need for family-centered interventions, not limited to providing social support.Lay abstractTypically developing siblings of children with autism spectrum disorders are often found to exhibit elevated levels of stress and depressive symptoms compared to siblings of typically developing children or siblings of children with other disabilities. Besides the behavioral problems of the child with autism and certain demographic characteristics that have been recognized as factors associated with typically developing siblings’ psychological distress, the role of parental mental health and the social support from the family has not been studied sufficiently. The goal of this study is to assess depressive symptoms in 85 Greek school-aged typically developing siblings of children with autism and to investigate for any associations between siblings’ depressive symptoms on one hand and demographics, parental mental health, and perceived social support on the other hand. It was found that typically developing siblings had higher levels of depressive symptoms compared to children from a general population sample. In addition, parental anxiety and social support from the family as perceived by the parents themselves were identified as independently associated with typically developing siblings’ depressive symptoms. Of note, perceived social support failed to attenuate the association between parental anxiety and siblings’ depressive symptoms. These results highlight the importance of assessing both parental and typically developing siblings’ psychological state to implement interventions addressed to the needs of all family members.
      Citation: Autism
      PubDate: 2020-10-22T05:35:05Z
      DOI: 10.1177/1362361320966847
       
  • Adverse event reporting in intervention research for young autistic
           children
    • Authors: Kristen Bottema-Beutel, Shannon Crowley, Micheal Sandbank, Tiffany G Woynaroski
      Abstract: Autism, Ahead of Print.
      Our team examined 150 reports on group-design, non-pharmacological interventions for young autistic children, to determine the prevalence of adverse event reporting. We found that only 11 studies mentioned adverse events; one indicated adverse events occurred, and an additional three indicated adverse effects occurred (i.e. adverse events that could be attributed to the intervention). We also coded reasons for participant withdrawal and found that of the 54 studies that reported reasons for withdrawal, 10 studies reported reasons that could be categorized as adverse events, 8 reported reasons that could be categorized as adverse effects, and an additional 12 studies reported reasons that were too vaguely described to determine adverse event status. We recommend that autism intervention researchers make concerted efforts to monitor, classify, and report adverse events so that practitioners, policy-makers, and families are better equipped to weigh potential benefits of interventions against potential harms.Lay abstractIn this study, we looked at published research on interventions for young autistic children that did not involve administering medication. We were interested in determining how often studies reported on whether adverse events (i.e. physical or psychological distress to the participants) or adverse effects (i.e. adverse events that are thought to be caused by the intervention) had occurred. We found that of the 150 reports we examined, only 11 mentioned adverse events. One of these studies reported adverse events occurred, and three reported that adverse effects occurred. We also reviewed the studies to examine the reasons that were given to explain why any participants dropped out of the intervention (termed “withdrawal”), to determine if any of these reasons could be considered adverse events or adverse effects. Fifty-four studies described reasons for withdrawal, and 10 of these studies had reasons that could be categorized as an adverse event, 8 studies had reasons that could be categorized as an adverse effect, and an additional 12 studies had reasons that were too vaguely described to determine whether they were adverse events or not. We recommend that autism intervention researchers develop more systematic methods of looking for and reporting adverse events and effects, so that professionals and families can be better informed when choosing to enroll their autistic children in interventions.
      Citation: Autism
      PubDate: 2020-10-20T05:36:13Z
      DOI: 10.1177/1362361320965331
       
  • Explicit and implicit self-esteem in youth with autism spectrum disorders
    • Authors: Renske van der Cruijsen, Bianca E Boyer
      Abstract: Autism, Ahead of Print.
      Although the link between self-esteem and psychopathology has been well established, studies on self-esteem in individuals with autism spectrum disorder are lacking. In this study, we aimed to (1) compare explicit and implicit self-esteem of youth with autism spectrum disorder to typically developing peers and to (2) explore relationships of implicit-, explicit-, and discrepant self-esteem measures with co-occurring internalizing and externalizing problems in youth with autism spectrum disorder. For this purpose, 25 individuals with autism spectrum disorder and 24 individuals as age- and intelligence quotient–matched controls aged 8–16 years participated in this study. Results showed lower explicit self-esteem in autism spectrum disorder compared to typically developing youth and no differences in implicit self-esteem between groups. In youth with autism spectrum disorder, low explicit self-esteem was related to co-occurring depression symptoms, whereas lower implicit self-esteem was related to externalizing symptoms. These results show that youth with autism spectrum disorder are at risk for developing low explicit self-esteem, which appears to be related to often co-occurring internalizing symptoms. This emphasizes the need to focus more on self-esteem in assessment and treatment of youth with autism spectrum disorder.Lay abstractHaving a stable and good self-esteem is important for maintaining a good mental health. However, having low self-esteem is a risk factor for developing depressive, anxious, or uncooperative/aggressive symptoms. While many individuals with an autism spectrum disorder have these symptoms, there is a lack of studies on self-esteem in this group. We studied self-esteem of youth with autism spectrum disorder and the connection to their co-occurring symptoms. To do this, different self-esteem profiles were investigated, including explicit self-esteem (how someone says their self-esteem is after reflecting on it), implicit self-esteem (how someone’s self-esteem is on a task that does not give them time to reflect on it), and the difference between both (high explicit with low implicit self-esteem or low explicit with high implicit self-esteem). Our results show that youth with autism spectrum disorder report lower self-esteem than youth without autism spectrum disorder when they have reflected on it (explicit self-esteem). And parents of children with autism spectrum disorder report that their children have even lower self-esteem. Implicit self-esteem was the same for youth with and without autism spectrum disorder. Furthermore, we found that within youth with autism spectrum disorder, there was a negative relationship between explicit self-esteem and depressive symptoms, and between implicit self-esteem and externalizing behavior. Taken together, youth with autism spectrum disorder are at risk for developing low self-esteem and when they do they have a higher risk of developing co-occurring problems. Therefore we stress that it is important to measure and improve the self-esteem of youth with autism spectrum disorder, so they develop less co-occurring problems and have a higher quality of life.
      Citation: Autism
      PubDate: 2020-10-15T09:33:50Z
      DOI: 10.1177/1362361320961006
       
  • Autistic traits are related to worse performance in a volatile reward
           learning task despite adaptive learning rates
    • Authors: Judith Goris, Massimo Silvetti, Tom Verguts, Jan R Wiersema, Marcel Brass, Senne Braem
      Abstract: Autism, Ahead of Print.
      Recent theories propose that autism is characterized by an impairment in determining when to learn and when not. We investigated this by estimating learning rate in environments varying in volatility and uncertainty. Specifically, we correlated autistic traits (in 163 neurotypical participants) with modelled learning behaviour during probabilistic reward learning under the following three conditions: a Stationary Low Noise condition with stable reward contingencies, a Volatile condition with changing reward contingencies and a Stationary High Noise condition where reward probabilities for all options were 60%, resulting in an uncertain, noisy environment. Consistent with earlier findings, we found less optimal decision-making in the Volatile condition for participants with more autistic traits. However, we observed no correlations between underlying adjustments in learning rates and autistic traits, suggesting no impairment in updating learning rates in response to volatile versus noisy environments. Exploratory analyses indicated that impaired performance in the Volatile condition in participants with more autistic traits, was specific to trials with reward contingencies opposite to those initially learned, suggesting a primacy bias. We conclude that performance in volatile environments is lower in participants with more autistic traits, but this cannot be unambiguously attributed to difficulties with adjusting learning rates.Lay abstractRecent theories propose that autism is characterized by an impairment in determining when to learn and when not. Here, we investigated this hypothesis by estimating learning rates (i.e. the speed with which one learns) in three different environments that differed in rule stability and uncertainty. We found that neurotypical participants with more autistic traits performed worse in a volatile environment (with unstable rules), as they chose less often for the most rewarding option. Exploratory analyses indicated that performance was specifically worse when reward rules were opposite to those initially learned for participants with more autistic traits. However, there were no differences in the adjustment of learning rates between participants with more versus less autistic traits. Together, these results suggest that performance in volatile environments is lower in participants with more autistic traits, but that this performance difference cannot be unambiguously explained by an impairment in adjusting learning rates.
      Citation: Autism
      PubDate: 2020-10-08T09:11:01Z
      DOI: 10.1177/1362361320962237
       
  • How do core autism traits and associated symptoms relate to quality of
           life' Findings from the Longitudinal European Autism Project
    • Authors: Bethany FM Oakley, Julian Tillmann, Jumana Ahmad, Daisy Crawley, Antonia San José Cáceres, Rosemary Holt, Tony Charman, Tobias Banaschewski, Jan Buitelaar, Emily Simonoff, Declan Murphy, Eva Loth
      Abstract: Autism, Ahead of Print.
      Previous studies have reported reduced quality of life in autism. Improving quality of life for autistic people is, therefore, a key priority for clinical research and practice. However, the relative impact of core autism traits (e.g. social-communication difficulties), as compared to associated mental health symptoms (e.g. anxiety, depression) on quality of life remains poorly understood. This is despite at least 20%–50% of autistic individuals experiencing associated anxiety and/or depression symptoms. Hence, we measured subjective quality of life in 573 six to thirty-year-olds (autism spectrum disorder N = 344), using two widely validated questionnaires. Adults self-reported on the World Health Organization Quality of Life–Brief instrument. Parents of children/adolescents completed the Child Health and Illness Profile. We assessed individual variability across both measures and modelled associations between quality of life, core autism traits, anxiety, and depression symptoms. Across both age groups and quality of life measures, autistic individuals scored lower than comparison individuals, on average, particularly for physical health in adults (d = −1.24, 95% confidence interval: [−1.56, −0.93]) and school achievement for children/adolescents (d = −1.06, 95% confidence interval: [−1.29, −0.84]). However, a notable proportion of autistic individuals (36%–71% across quality of life domains) did not have reduced quality of life. Across ages and quality of life measures, severity of associated symptoms was significantly related to reduced quality of life on several domains, after accounting for core autism traits. Most notably, depression symptoms were related to reduced physical/psychological well-being in both adults (β ⩾ −0.34) and children/adolescents (β = −0.29, 95% confidence interval: [−0.36, −0.14]). For children/adolescents, anxiety symptoms (β ⩾ −0.28) and core social-communication difficulties (β ⩾ −0.22) were also related to subjective quality of life outcomes. Overall, findings indicate that not all autistic individuals experience reduced subjective quality of life. Variability in quality of life is significantly influenced by associated symptoms, across developmental stage. This may provide a tractable target for mental health services to improve quality of life for autistic individuals over the lifespan.Lay abstractPrevious studies suggest that some autistic individuals report lower satisfaction, or well-being, with different aspects of everyday life than those without autism. It is unclear whether this might be partly explained by symptoms of anxiety and/or depression, which affect at least 20%–50% of autistic people. In this study, we measured individual differences in well-being in 573 six to thirty-year-olds with and without a diagnosis of autism. We investigated whether individual differences in well-being were explained by autism traits (e.g. social-communication difficulties) and/or anxiety and depression symptoms. We showed that, though well-being was lower for some autistic individuals, compared to those without autism, many autistic individuals reported good well-being. Where well-being was reduced, this was particularly explained by depression symptoms, across all ages. For children/adolescents, anxiety and social-communication difficulties were also related to some aspects of well-being. Our study suggests that support and services for improving mental health, especially depression symptoms, may also improve broader outcomes for autistic people.
      Citation: Autism
      PubDate: 2020-10-07T07:07:13Z
      DOI: 10.1177/1362361320959959
       
  • Anxiety in autistic individuals who speak few or no words: A qualitative
           study of parental experience and anxiety management
    • Authors: Joanne Tarver, Effie Pearson, Georgina Edwards, Aryana Shirazi, Liana Potter, Priya Malhi, Jane Waite
      Abstract: Autism, Ahead of Print.
      Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words.Lay abstractAnxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families' During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.
      Citation: Autism
      PubDate: 2020-10-01T08:55:51Z
      DOI: 10.1177/1362361320962366
       
  • Characteristics of toddlers with early versus later diagnosis of autism
           spectrum disorder
    • Authors: Lauren E Miller, Yael G Dai, Deborah A Fein, Diana L Robins
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder symptom emergence is heterogeneous, yet literature comparing young children diagnosed early versus later is relatively scant. Toddlers diagnosed with autism spectrum disorder between 12 and 18 months (n = 20), 19 and 24 months (n = 65), or 25 and 41 months (n = 27) were compared on demographics, developmental functioning, and symptoms. Later diagnosed children were more impaired than both younger groups on nonverbal reasoning, adaptive behavior, and autism spectrum disorder severity. Fine motor, receptive language, and social skills followed a linear pattern, with 25- to 41-month children more delayed than 19- to 24-month participants, who were more delayed than 12- to 18-month toddlers. Communication skills were similarly impaired across groups. Universal autism spectrum disorder screening before 18 months may detect toddlers when symptoms are milder and more amenable to intervention.Lay abstractThe emergence of autism symptoms in childhood is variable, with some children showing signs of autism spectrum disorder very early, and others not being identified until much later. Although most children in the United States are not diagnosed with autism spectrum disorder until preschool, at ages 3–4 years, symptoms can be reliably detected at 14 months. It is less certain how those toddlers diagnosed with autism spectrum disorder earlier versus later differ from each other clinically. This study revealed that young children diagnosed later in development, between ages 25 and 41 months, are more impaired on measures of cognitive, adaptive, and social functioning than their counterparts who are diagnosed with autism spectrum disorder earlier. All young children with autism spectrum disorder are impaired in communication to a similar degree, however. Universal autism screening at 18 months may identify toddlers with autism spectrum disorder when their symptoms are milder and more readily amenable to intervention. Repeated screening at 24 months is supported to detect those children missed by an earlier screening, who may be more severely affected. Caregivers should be encouraged to pursue diagnostic evaluation at an initial positive screening result to ensure timely diagnosis and treatment.
      Citation: Autism
      PubDate: 2020-09-26T11:29:57Z
      DOI: 10.1177/1362361320959507
       
  • Gastrointestinal problems are associated with increased repetitive
           behaviors but not social communication difficulties in young children with
           autism spectrum disorders
    • Authors: Payal Chakraborty, Kimberly L H Carpenter, Samantha Major, Megan Deaver, Saritha Vermeer, Brianna Herold, Lauren Franz, Jill Howard, Geraldine Dawson
      Abstract: Autism, Ahead of Print.
      Individuals with autism spectrum disorder are more likely than typically developing individuals to experience a range of gastrointestinal abnormalities, including chronic diarrhea, constipation, food sensitivities, and abdominal pain. These gastrointestinal symptoms have been associated with higher levels of irritability and aggressive behavior, but less is known about their relationship with core autism spectrum disorder symptoms. We investigated the relationship between autism spectrum disorder and gastrointestinal symptom severity while accounting for three associated behavioral symptom domains (Irritability, Aggressiveness, and Specific Fears), in a sample of 176 children (140 males and 36 females) ages 2–7 years old with autism spectrum disorder. Most participants had at least one reported gastrointestinal symptom (93.2%) and had more than one gastrointestinal symptom (88.1%). After accounting for each associated behavioral symptom domain, repetitive behaviors and stereotypies were positively associated with gastrointestinal symptom severity. Social and communication difficulties were not significantly associated with gastrointestinal symptom severity after accounting for associated behavioral symptoms. Our findings replicate a previously described association between irritability and aggression and gastrointestinal symptoms. Furthermore, gastrointestinal symptom severity is associated with repetitive behaviors, a subset of core autism spectrum disorder symptoms. This suggests that gastrointestinal symptoms may exacerbate repetitive behaviors, or vice versa, independent from other associated behavioral symptoms.Lay AbstractIndividuals with autism spectrum disorder are more likely than typically developing individuals to experience a range of gastrointestinal abnormalities, including chronic diarrhea, constipation, food sensitivities, and abdominal pain. These gastrointestinal symptoms have been associated with higher levels of irritability and aggressive behavior, but less is known about their relationship with core autism spectrum disorder symptoms. We investigated the relationship between autism spectrum disorder symptom severity and gastrointestinal symptoms while accounting for three associated behavioral symptom domains (Irritability, Aggressiveness, and Specific Fears), in a sample of 176 children (140 males and 36 females) ages 2–7 years old with autism spectrum disorder. A large majority (93.2%) of the sample had at least one reported gastrointestinal symptom, and most (88.1%) participants had more than one gastrointestinal symptom. Various types of gastrointestinal symptoms were reported; the most common symptoms reported were constipation, food limits, gas/bloating, and stomach pain. After accounting for each associated behavioral symptom domain, repetitive behaviors and stereotypies were significantly associated with gastrointestinal symptom severity. Increased severity of autism spectrum disorder symptoms was correlated with increased gastrointestinal symptom severity. Social and communication difficulties were not significantly associated with gastrointestinal symptom severity after accounting for associated behavioral symptoms. Our findings replicate a previously described association between irritability and aggression and gastrointestinal symptoms. Furthermore, we found that repetitive behaviors, but not social or communication symptoms, are associated with gastrointestinal symptom severity, even after accounting for associated behavioral symptoms. This suggests that gastrointestinal symptoms may exacerbate repetitive behaviors, or vice versa, independent from other associated behavioral symptoms.
      Citation: Autism
      PubDate: 2020-09-25T05:53:52Z
      DOI: 10.1177/1362361320959503
       
  • How is autistic identity in adolescence influenced by parental disclosure
           decisions and perceptions of autism'
    • Authors: Ariana Riccio, Steven K Kapp, Allison Jordan, Anna Marie Dorelien, Kristen Gillespie-Lynch
      Abstract: Autism, Ahead of Print.
      A large body of literature examines parental interpretations of their child’s autism diagnosis. However, research examining intersections between parental disclosure of their child’s autism diagnosis to their child and their child’s identity development is lacking. The primary aim of this study was to analyze if parental decisions to disclose/withhold their child’s autism diagnosis influence adolescents’ perceptions of autism and identity development. Adolescent participants (n = 19) and their mothers, recruited from an informal educational program, completed in-person interviews and online questionnaires, respectively. Adolescents were told about their autism diagnosis in varying ways. Adolescents whose parents voluntarily disclosed their autism diagnosis to them described autism and themselves more positively than adolescents who did not experience voluntary disclosure. Although parents and teens showed similarities on a group level when defining autism, parents and children expressed diverse themes in their definitions of autism. Findings suggest that parents can help their children develop neurodiversity-aligned perspectives about autism by mindfully discussing autism with them early in their development.Lay abstractThere is a lot of research about how parents think about their child’s autism but we don’t know much about how parents talk with their kids about autism. How parents talk with their kids about autism may shape how kids see autism. A team of autistic and non-autistic people (including a mother of an autistic person) did a study. We wanted to know if how parents talk with their kids about autism shapes how their kids see autism. Nineteen teens from a summer camp did interviews and surveys. Their mothers did surveys. Teens learned about if they had autism in different ways. Some teens still didn’t know they were autistic. Teens whose moms chose to tell them about their autism talked about autism and themselves more positively than teens whose moms didn’t choose to talk with them about autism. Only teens whose moms chose to talk with them about autism described themselves as having social strengths. Teens had a harder time defining autism than moms. However, teens and moms talked about autism in similar ways. Our study shows that parents can help their kids see autism and themselves more positively by talking with their kids about autism early in development.
      Citation: Autism
      PubDate: 2020-09-24T08:59:31Z
      DOI: 10.1177/1362361320958214
       
  • Development and preliminary validation of a depressive symptomatology
           detection scale among children and adolescents on the autism spectrum
    • Authors: Lucie Bellalou, Naomi Downes, Emilie Cappe
      Abstract: Autism, Ahead of Print.
      High rates of depressive disorders are reported among young people on the autism spectrum. This condition is generally assessed using measures validated for typically developing young people. Tools adapted to children on the autism spectrum are not tailored to detect Major Depressive Disorder, nor have they been used among samples with an intellectual disability. To fill this gap, this article builds a novel Scale for evaluating depressive symptoms among youth on the autism spectrum (Echelle d’évaluation de la symptomatology dépressive spécifique à l’autisme) and evaluates its performance using a sample of 153 young people on the autism spectrum in France. The Echelle d’évaluation de la symptomatology dépressive spécifique à l’autisme was completed by parents of children and adolescents (aged 3–17 years) via an interview with a psychologist. The Echelle d’évaluation de la symptomatology dépressive spécifique à l’autisme has very good internal consistency, as well as good content validity. The scale is composed of two factors: (1) behavioral changes and (2) emotional and cognitive changes. Future studies should replicate this validation study with a larger sample size and investigate interrater reliability. Overall, results suggest preliminary support for using the Echelle d’évaluation de la symptomatology dépressive spécifique à l’autisme among youth on the autism spectrum.Lay abstractMany individuals on the autism spectrum experience depressive symptoms. These symptoms contribute to poor quality of life and may have a more negative impact than core autistic features. However, identifying depressive symptoms among individuals on the spectrum is a real challenge. In this study, we investigate the psychometric qualities of a French scale for evaluating depressive symptoms among youth on the autism spectrum. Participants were 153 autistic children and adolescents aged between 3 and 17 years. The majority of the sample was male (73.86%). One of their parents completed the scale for evaluating depressive symptoms among youth on the autism spectrum during an interview with a psychologist. Overall, the findings indicate the scale may be reliably used with children and adolescents on the autism spectrum. Experts deemed the items as being representative of depressive symptoms. The scale is composed of two factors: behavioral changes on one hand and cognitive and emotional changes on the other. The results are encouraging and show the scale is a promising instrument for assessing Major Depressive Disorder symptomatology among youth on the spectrum. Future studies should focus on testing this scale among adults and developing an auto-evaluative section.
      Citation: Autism
      PubDate: 2020-09-21T07:25:45Z
      DOI: 10.1177/1362361320958209
       
  • Physical activity participation among adolescents with autism spectrum
           disorder
    • Authors: Patrick Jachyra, Rebecca Renwick, Brenda Gladstone, Evdokia Anagnostou, Barbara E Gibson
      Abstract: Autism, Ahead of Print.
      Adolescents with autism spectrum disorder are less physically active compared with their age-related peers. Despite the many benefits of physical activity, little is known about why they are predominantly inactive. To date, research has rarely included adolescent’s perspectives, and little is known about how wider social, systemic, and policy forces shape physical activity. The purpose of this study was to explore the perceptions, meanings, and role of physical activity in the lives of adolescents with autism spectrum disorder, and draw on their experiences to examine how social and cultural processes shaped their participation. Ten adolescent boys with autism spectrum disorder created individual digital stories, and participated in two interviews. Thematic analysis was informed by a critical social science approach. The results highlight that bullying, challenges in community programs, and the prioritization of therapeutic interventions limited participation. Participation was maximized when physical activity generated meaning, purpose, a sense of identity, and affective pleasures. The study findings illuminate the complexity of physical activity participation which has not previously been described in the literature. The findings suggest potential value in promoting the affective pleasures of movement, along with facilitating social and systemic pathways to enhance physical activity participation.Lay abstractAdolescents with autism spectrum disorder are less likely to be physically active compared to their age-related peers. Despite the lower levels of physical activity observed among adolescents with autism spectrum disorder, it is unknown why they are predominantly inactive. Much of the research so far has focused on understanding how biological aspects influence physical activity participation. But there is little research that has examined how social and cultural components influence their physical activity participation. There is also little research that has sought the perspectives and experiences of adolescents with autism spectrum disorder. In this study, 10 adolescent boys with autism spectrum disorder created a digital story, and also participated in two face-to-face interviews. The purpose of the study was to examine how individual, social, and cultural forces influenced physical activity participation. Analysis of the data highlight that bullying, challenges in community programs, and the prioritization of therapeutic interventions limited participation. On the contrary, participants were more likely to be active when physical activity generated meaning, purpose, a sense of identity, and affective pleasures. The findings add new knowledge suggesting that adolescents with autism spectrum disorder are not simply unmotivated. Rather, physical activity participation was shaped by wider social experiences, norms, values, and practices in which they were immersed. The findings suggest a need for directed efforts to create policies and practices which are individualized and reflective of the needs and abilities of adolescents with autism spectrum disorder to promote physical activity participation and potentially enhance physical health and wellbeing.
      Citation: Autism
      PubDate: 2020-09-14T07:45:22Z
      DOI: 10.1177/1362361320949344
       
  • A commentary on interpreting the United States preventive services task
           force autism screening recommendation statement
    • Authors: Emily Hickey, R Christopher Sheldrick, Jocelyn Kuhn, Sarabeth Broder-Fingert
      Abstract: Autism, Ahead of Print.
      In 2016, the US Preventive Services Task Force concluded that there was “insufficient” (“I” statement) evidence to support universal primary care screening for autism spectrum disorder. The statement led to controversy among research and clinical communities. Although a number of papers have since been published arguing for the potential benefit of autism spectrum disorder screening, none adequately address the potential harms of autism spectrum disorder screening. This evidence gap may relate to confusion regarding how the US Preventive Services Task Force conceptualizes and evaluates potential harm. In this commentary, we explore how the US Preventive Services Task Force operationalizes harm and discuss how the potential for harm was described in the “I” statement on autism spectrum disorder screening. This information can serve as a guide for investigators working to study the benefits and harms of autism spectrum disorder screening in order to fill the research gaps cited by the US Preventive Services Task Force report. Finally, we recommend future research directions for exploring harms of autism spectrum disorder screening, filling cited research gaps, and ultimately ensuring that the benefits of autism spectrum disorder screening truly outweigh the harms for all children and their families.
      Citation: Autism
      PubDate: 2020-09-14T07:44:43Z
      DOI: 10.1177/1362361320957463
       
  • Increased prevalence of non-communicable physical health conditions among
           autistic adults
    • Authors: Elizabeth Weir, Carrie Allison, Varun Warrier, Simon Baron-Cohen
      Abstract: Autism, Ahead of Print.
      Autistic individuals may be at risk of premature mortality, and physical health comorbidity increases this risk; however, most studies fail to include older autistic adults or consider lifestyle-related factors that affect health. We developed an anonymous, online physical health survey. The final sample included n = 2368 individuals (mean age = 41.42), and of these, n = 1156 were autistic individuals (mean age = 40.98). We utilized three sex-stratified statistical models to determine the prevalence of cancer, cardiovascular conditions, respiratory conditions, and diabetes. All three models indicate that autistic females are more likely to have cardiovascular conditions, respiratory conditions, asthma, low blood pressure, arrhythmias, and prediabetes than non-autistic females, and autistic males are more likely to have arrhythmias than non-autistic males; these results suggest that autistic individuals carry increased risks for these conditions when compared to the general population, even after controlling for age, ethnicity, education level, body mass index, smoking, and alcohol use. Further, these risks may differ depending on biological sex for autistic individuals. Autistic adults, and particularly autistic females, have greater and wider-ranging risks than previously thought, even after controlling for demographic and lifestyle-related factors. Although this is a large sample of autistic adults across the lifespan, future research should employ larger, population-based samples to confirm these findings.Lay abstractPrevious research indicates autistic individuals die at a younger age than others and that this is possibly due in part to chronic physical health conditions. The present study used an anonymous, online survey to determine how common certain physical health conditions are among autistic adults, compared with non-autistic adults. We found autistic adults are more likely to develop heart conditions, lung conditions, and diabetes than non-autistic adults. Autistic females may be at higher risk of developing certain conditions (including respiratory conditions, asthma, and prediabetes) than autistic males. Finally, autistic individuals have increased health risks even when considering lifestyle factors (such as smoking, alcohol, and body mass index). This is still a relatively small study, and future research needs to confirm these findings and identify why these risks exist.
      Citation: Autism
      PubDate: 2020-09-10T06:16:14Z
      DOI: 10.1177/1362361320953652
       
  • Neurological disorders in autism: A systematic review and meta-analysis
    • Authors: Pei-Yin Pan, Sven Bölte, Preet Kaur, Sadia Jamil, Ulf Jonsson
      Abstract: Autism, Ahead of Print.
      The etiological significance of neurological disorders in autism is debated, but it is clear that they complicate support provision and clinical management, and can have negative impact on outcomes. This systematic review and meta-analysis explored the full range of co-occurring neurological disorders in autism. We estimated the odds of having neurological complications compared to the general population and other neurodevelopmental conditions, as well as the overall prevalence of different neurological disorders. Seventy-nine articles were eligible for the systematic review, including 28 case-control studies, 43 prevalence studies, and 8 cohort studies. Findings were heterogeneous across studies. Overall, autistic individuals were significantly more likely than the general population to exhibit epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headache, and congenital abnormalities of the nervous system, with prevalence estimates ranging from 1.1% (0%–3.3%; hydrocephalus) to 14.2% (11.3%–17.2%; epilepsy). Epilepsy was also more common in autism than in attention-deficit/hyperactivity disorder (odds ratio [95% confidence interval] = 4.06 [2.81–5.88]). Findings indicate that awareness of neurological disorders and neurological check-ups are indicated in autism to ensure adequate physical health care and support. Prospective studies of neurological disorders in children diagnosed with or at risk of autism might further enhance our understanding of causal pathways.Lay abstractNeurological disorders, such as epilepsy and cerebral palsy, have been reported to occur among individuals with autism beyond chance and may have an impact on daily living across the lifespan. Although there has been research investigating neurological disorders in autism, the findings are not always conclusive. Previous summaries of existing studies have not evaluated the full range of neurological disorders. This study aimed to comprehensively explore the neurological problems appearing in autism to provide updated information that is needed for better healthcare and support in this population. We looked at already published studies focusing on risk or frequency of neurological disorders in autism. Our results suggest that individuals with autism are more likely than the general population to have a range of neurological disorders, including epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headache, and inborn abnormalities of the nervous system. In order to provide individualized healthcare and support of high quality to individuals diagnosed with autism, health care professionals and other support providers need to be attentive to neurological complications. To further improve our understanding about the link between autism and neurological disorders, future research should follow the neurological health of children who are diagnosed with or are at increased likelihood of autism.
      Citation: Autism
      PubDate: 2020-09-10T06:15:15Z
      DOI: 10.1177/1362361320951370
       
  • Development and psychometric testing of the AASPIRE Adult Autism
           Healthcare Provider Self-Efficacy Scale
    • Authors: Christina Nicolaidis, Gavin Schnider, Junghee Lee, Dora M Raymaker, Steven K Kapp, Lisa A Croen, Anna Urbanowicz, Joelle Maslak
      Abstract: Autism, Ahead of Print.
      Our objective was to develop a measure of healthcare providers’ self-efficacy in providing healthcare to autistic adults and to better understand their training needs. We used a community-based participatory research approach with academic researchers, autistic adults, supporters, and healthcare providers. We developed a one-page questionnaire which included the new 6-item self-efficacy scale, two items on how challenging and rewarding it is to provide care to autistic adults, and seven items on provider characteristics. We surveyed 143 healthcare providers from eight primary care clinics in Oregon and California, United States. Preliminary psychometric testing found the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Adult Autism Healthcare Provider Self-Efficacy Scale to have good internal consistency reliability (Cronbach’s alpha 0.87) and consist of a single factor. A priori hypothesis testing found correlations in the expected directions. Only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients and identify and make accommodations.Lay abstractThe adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers’ confidence (or “self-efficacy”) in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers’ training needs most effectively.
      Citation: Autism
      PubDate: 2020-08-29T06:33:35Z
      DOI: 10.1177/1362361320949734
       
  • Telehealth cognitive behavioral therapy for insomnia in children with
           autism spectrum disorder: A pilot examining feasibility, satisfaction, and
           preliminary findings
    • Authors: Christina S McCrae, Wai Sze Chan, Ashley F Curtis, Neetu Nair, Chelsea B Deroche, Melissa Munoz, Stephanie Takamatsu, Deija McLean, Mattina Davenport, Julie E Muckerman, Nicole Takahashi, Dillon McCann, Kevin McGovney, Pradeep Sahota, Micah O Mazurek
      Abstract: Autism, Ahead of Print.
      Insomnia is common in children with autism. Cognitive behavioral treatment for childhood insomnia may improve sleep and functioning in children with autism and their parents, but delivery involving multiple office visits limits accessibility. This single-arm pilot study tested telehealth delivery of eight-session cognitive behavioral treatment for childhood insomnia in 17 children (6–12 years) with autism spectrum disorder and insomnia and their parent(s). Treatment integrity was assessed each session (delivery, by therapist; receipt, participant understanding; and enactment, home practice). Treatment satisfaction was assessed after treatment. Children and parents wore actigraphs and completed electronic diaries for 2 weeks, children completed 5-min Holter Monitoring (assessed heart rate variability, physiological arousal indicator), and parents completed Aberrant Behavior Checklist before and after 1 month. Average integrity scores were high (98%, delivery; 93%, receipt; and 82%, enactment). Parents found cognitive behavioral treatment for childhood insomnia helpful, age-appropriate, and autism-friendly. Paired-samples t-tests (family-wise error controlled) indicated telehealth cognitive behavioral treatment for childhood insomnia improved child and parent sleep (objective and subjective) and functioning (child—decreased irritability, lethargy, stereotypy, hyperactivity; parent—decreased fatigue). At 1 month, inappropriate speech also decreased, but hyperactivity was no longer decreased. Other gains were maintained. Most children demonstrated reduced arousal following treatment. This pilot shows telehealth cognitive behavioral treatment for childhood insomnia is feasible and may improve child and parent sleep, child behavior and arousal, and parent fatigue. A randomized controlled trial of telehealth cognitive behavioral treatment for childhood insomnia for children with autism is needed.Lay abstractInsomnia is common in children with autism. Cognitive behavioral treatment for childhood insomnia (CBT-CI) may improve sleep and functioning in children with autism and their parents, but typical delivery involving multiple office visits can make it difficult for some children to get this treatment. This pilot study tested telehealth delivery of CBT-CI using computers, which allowed children and their parents to get the treatment at home. This pilot shows therapists that parents and children were able to use telehealth CBT-CI to improve child and parent sleep, child behavior and arousal, and parent fatigue. Parents found telehealth CBT-CI helpful, age-appropriate, and autism-friendly. Telehealth CBT-CI holds promise for treating insomnia in school-aged children with autism and deserves further testing.
      Citation: Autism
      PubDate: 2020-08-25T08:32:46Z
      DOI: 10.1177/1362361320949078
       
  • Epilepsy in adulthood: Prevalence, incidence, and associated antiepileptic
           drug use in autistic adults in a state Medicaid system
    • Authors: Lauren Bishop, Kiley J McLean, Eric Rubenstein
      Abstract: Autism, Ahead of Print.
      Although epilepsy commonly presents with autism in children, it is currently unknown whether established estimates represent the prevalence and incidence of epilepsy in autistic adults. Our objective was to use population-level Medicaid data to determine prevalence, incidence, and antiepileptic drug use associated with epilepsy in a unique population of autistic adults aged 21+ with (N = 2738) and without (N = 4775) intellectual disability and to compare results to adults with intellectual disability alone (N = 18,429). We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. New incidence of epilepsy was 23.6 incident cases per 1000 person years (95% confidence interval: 21.3, 26.2) in autistic adults with intellectual disability, 7.7 incident cases per 1000 person years (95% confidence interval: 6.6, 8.9) in autistic adults without intellectual disability, and 15.9 incident cases per 1000 person years (95% confidence interval: 15.2, 16.7) in adults with intellectual disability alone. Female sex and intellectual disability were associated with increased risk of prevalent and incident epilepsy in autistic adults. Findings underscore the importance of treating prevalent epilepsy and screening and preventing incident epilepsy in autistic adults as they age.Lay abstractEpilepsy is more common in autistic children compared to children without autism, but we do not have good estimates of how many autistic adults have epilepsy. We used data from a full population of 7513 autistic adults who received Medicaid in Wisconsin to figure out the proportion of autistic adults who have epilepsy, as compared to 18,429 adults with intellectual disability. We also wanted to assess how often epilepsy is first diagnosed in adulthood. Finally, we wanted to see whether antiepileptic drugs are being used to treat epilepsy in autistic adults. We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. Autistic women and autistic adults with intellectual disability were more likely than autistic men and autistic adults without intellectual disability to have both previous and new diagnoses of epilepsy. Finally, we found that antiepileptic medications are commonly prescribed to autistic people who do not have epilepsy potentially to treat mental health conditions or behavior problems, and that antiepileptic medications are not always prescribed to autistic people with epilepsy even though they are indicated as a first-line epilepsy treatment. The findings of this study highlight the need to effectively treat and prevent epilepsy in autistic adults.
      Citation: Autism
      PubDate: 2020-08-06T04:51:44Z
      DOI: 10.1177/1362361320942982
       
  • Increased emotional eating behaviors in children with autism: Sex
           differences and links with dietary variety
    • Authors: Gregory L Wallace, Emily Richard, Alexandra Wolff, Monica Nadeau, Nancy Zucker
      Abstract: Autism, Ahead of Print.
      Although food selectivity and so-called “picky” eating are well documented in autism spectrum disorder, emotion-linked eating has rarely been investigated. This study examined emotion-linked over- and under-eating based on parent ratings of these behaviors in 4- to 17-year-old children with autism spectrum disorder (n = 190) as compared to same-age typically developing children (n = 119). Children with autism spectrum disorder were rated as exhibiting both more emotional over-eating and more emotional under-eating behaviors than their typically developing peers. Furthermore, while sex differences in these emotional eating behaviors were not observed in the typically developing children, girls with autism spectrum disorder were rated as experiencing more emotional over-eating behaviors than boys with autism spectrum disorder. Finally, among all children with autism spectrum disorder, emotional over-eating was linked with increased consumption of sweet foods and decreased consumption of vegetables. These findings have implications for better understanding eating habits in children with autism spectrum disorder and suggest that emotional eating behaviors might have both immediate and downstream health impacts.Lay abstractAlthough “picky” eating is well documented in autism spectrum disorder, emotional eating has rarely been investigated. This study examined emotional over- and under-eating based on parent ratings of these behaviors in 4- to 17-year-old children with autism spectrum disorder (n = 190) as compared to same-age typically developing children (n = 119). Children with autism spectrum disorder were rated as exhibiting both more emotional over-eating and more emotional under-eating behaviors than their typically developing peers. Furthermore, while sex differences in these emotional eating behaviors were not observed in the typically developing children, girls with autism spectrum disorder were rated as experiencing more emotional over-eating behaviors than boys with autism spectrum disorder. Finally, among all children with autism spectrum disorder, emotional over-eating was linked with increased consumption of sweet foods and decreased consumption of vegetables. These findings have implications for better understanding eating habits in children with autism spectrum disorder and suggest that emotional eating behaviors might have both immediate and downstream health impacts.
      Citation: Autism
      PubDate: 2020-08-01T08:14:08Z
      DOI: 10.1177/1362361320942087
       
  • Vision care among school-aged children with autism spectrum disorder in
           North America: Findings from the Autism Treatment Network Registry
           Call-Back Study
    • Authors: Olivia J Lindly, James Chan, Rachel M Fenning, Justin G Farmer, Ann M Neumeyer, Paul Wang, Mark Swanson, Robert A Parker, Karen A Kuhlthau
      Abstract: Autism, Ahead of Print.
      Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care.Lay AbstractChildren with autism are at high risk for vision problems, which may compound core social and behavioral symptoms if untreated. Despite recommendations for school-aged children with autism to receive routine vision testing by an eye care practitioner (ophthalmologist or optometrist), little is known about their vision care. This study, therefore, examined vision care among 351 children with autism ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Parents were surveyed using the following vision care measures: (1) child’s vision was tested with pictures, shapes, or letters in the past 2 years; (2) child’s vision was tested by an eye care practitioner in the past 2 years; (3) child was prescribed corrective eyeglasses; and (4) child wore eyeglasses as recommended. Sociodemographic characteristics such as parent education level, child functioning characteristics such as child communication abilities, and family functioning characteristics such as caregiver strain were also assessed in relationship to vision care. Although 78% of children with autism had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Differences in vision care were additionally found among children with autism by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism do not receive recommended vision care and highlight potentially modifiable disparities in vision care.
      Citation: Autism
      PubDate: 2020-07-22T04:48:55Z
      DOI: 10.1177/1362361320942091
       
  • Using phecode analysis to characterize co-occurring medical conditions in
           autism spectrum disorder
    • Authors: Michelle D Failla, Kyle L Schwartz, Shikha Chaganti, Laurie E Cutting, Bennett A Landman, Carissa J Cascio
      Abstract: Autism, Ahead of Print.
      Individuals with autism spectrum disorder experience a significant number of co-occurring medical conditions, yet little is known about these conditions beyond prevalence. Using large-scale de-identified medical records, we can use a novel phecode-based tool to characterize co-occurring conditions in autism spectrum disorder. We hypothesized that individuals with autism spectrum disorder experience an increased burden of co-occurring conditions as measured by presence, frequency, and duration of visits related to co-occurring conditions. Secondarily, we hypothesized that age at first encounter for autism spectrum disorder (early, 5) would be associated with different co-occurring conditions. The International Classification of Diseases, Ninth Revision, codes were extracted from a large anonymized electronic medical center database for 3097 individuals with autism spectrum disorder and 3097 matched controls. Co-occurring conditions were characterized using a novel tool (pyPheWAS) to examine presence, frequency, and duration of each condition. We identified several categories of co-occurring conditions in autism spectrum disorder: neurological (convulsions, sleep disorders); psychiatric (anxiety disorders, adjustment/conduct disorders), as well as constipation, hearing loss, and developmental delays. Our work confirms individuals with autism spectrum disorder are under a significant medical burden, with increased duration and frequency of visits associated with co-occurring conditions. Adequate management of these conditions could improve quality of life for individuals with autism spectrum disorder.Lay abstractPeople with autism spectrum disorder often have a number of other medical conditions in addition to autism. These can range from constipation to epilepsy. This study uses medical record data to understand how frequently and how long people with autism have to be seen by a medical professional for these other medical conditions. This study confirmed that people with autism often have a number of other medical conditions and that they have to go see a medical professional about those conditions often. We also looked to see if children diagnosed with autism after age 5 years might have different medical conditions compared to children diagnosed earlier. Children diagnosed later had more conditions like asthma, hearing loss, and mood disorders. This work describes how much medical care people with autism get for different medical conditions and the burden of seeking additional medical care for people with autism and their families.
      Citation: Autism
      PubDate: 2020-07-14T11:57:49Z
      DOI: 10.1177/1362361320934561
       
  • Healthcare service utilization and cost among transition-age youth with
           autism spectrum disorder and other special healthcare needs
    • Authors: Jennifer L Ames, Maria L Massolo, Meghan N Davignon, Yinge Qian, Lisa A Croen
      Abstract: Autism, Ahead of Print.
      Youth with autism spectrum disorder often have complex medical needs. Disruptions of healthcare during the transition from pediatric to adult healthcare may put youth with autism spectrum disorder at higher risk of medical emergencies and high medical costs. We conducted a study among transition-age youth (14–25 years old) receiving healthcare at Kaiser Permanente Northern California during 2014–2015. We examined the differences in healthcare utilization and costs among youth with autism spectrum disorder (n = 4123), attention deficit and hyperactivity disorder (n = 20,6015), diabetes mellitus (n = 2156), and general population controls (n = 20,615). Analyses were also stratified by age and sex. Youth with autism spectrum disorder had the highest utilization of outpatient primary care, mental health, and psychotropic medications and the lowest utilization of obstetrics/gynecology and urgent care. Costs for youth with autism spectrum disorder were higher than those for attention deficit and hyperactivity disorder and general population peers and lower than for diabetes mellitus. Utilization patterns varied by age. Transition-age youth with autism spectrum disorder generally utilize healthcare at higher rates relative to attention deficit and hyperactivity disorder and general population peers but at similar or lower rates than diabetes mellitus peers, indicating this group’s complex combination of psychiatric and medical healthcare needs. The relatively high utilization of psychiatric services and low utilization of women’s health services in transition-age youth with autism spectrum disorder may have implications for long-term health and warrants additional research.Lay abstractYouth with autism spectrum disorder often have complex medical needs. Disruptions of healthcare during the transition from pediatric to adult healthcare may put youth with autism spectrum disorder at higher risk of medical emergencies and high medical costs. To understand healthcare utilization during the transition years, we conducted a study among transition-age youth (14–25 years old) receiving healthcare at Kaiser Permanente Northern California during 2014–2015. We examined differences in healthcare utilization and costs among youth with autism spectrum disorder (n = 4123), attention deficit and hyperactivity disorder (n = 20,6015), diabetes mellitus (n = 2156), and general population controls (n = 20,615). Analyses were also stratified by age and sex. Youth with autism spectrum disorder had the highest utilization of outpatient primary care, mental health, and psychotropic medications and the lowest utilization of obstetrics/gynecology and urgent care. Costs for youth with autism spectrum disorder were higher than those for attention deficit and hyperactivity disorder and general population peers and lower than for diabetes mellitus. Healthcare utilization patterns varied by age. Transition-age youth with autism spectrum disorder generally used healthcare at higher rates relative to attention deficit and hyperactivity disorder and general population peers but at similar or lower rates than diabetes mellitus peers, indicating this group’s complex combination of psychiatric and medical healthcare needs. The relatively high utilization of psychiatric services and low utilization of women’s health services in transition-age youth with autism spectrum disorder may have implications for long-term health and warrants additional research.
      Citation: Autism
      PubDate: 2020-06-25T10:55:29Z
      DOI: 10.1177/1362361320931268
       
  • A grounded theory of adoption and maintenance of physical activity among
           autistic adults
    • Authors: Andrew M Colombo-Dougovito, A Josephine Blagrave, Sean Healy
      Abstract: Autism, Ahead of Print.
      Background:Although a growing body of literature has explored the physical activity experiences from the perspective of children on the autism spectrum, the perspective of autistic adults remains largely unheard. Due to this absence of perspective, there exists limited knowledge of the appropriateness and generalizability of current models and theories of physical activity for this population.Methods:A constructivist grounded theory study was conducted to explore the experiences of adoption and maintenance of physical activity from the direct perspective of autistic adults. Autistic adults (n = 23) from the United States and the United Kingdom were recruited.Results:A total of 29 codes emerged from the coding process. These codes were formed into four broad categories: (1) individual attributes; (2) environmental factors; (3) social relationships; and (4) social experiences. The interconnectedness of these four categories was explored.Conclusions:The findings and presented model highlight the importance of building successful experiences for young children on the autism spectrum, so that they are more likely to continue physical activity into their adult life. Furthermore, findings emphasize the importance of creating noncompetitive, sensory-friendly physical activity experiences for autistic adults that offer flexibility in social engagement.Lay abstractLittle is known about how autistic adults experience physical activity. To begin to change this, we interviewed 23 autistic adults from the United State and the United Kingdom about their past and current experiences of physical activity participation. The interviewees told us about how their physical activity experiences were highly influenced by their individual strengths, the setting in which the activity took place, the presence of people to support their physical activities, and the sensory experiences they had while in physical activity. Through these interviews, we were able to create a model that represented the physical activity experiences discussed. Based on the model that emerged from this study, we recommend physical activity opportunities are made available that are noncompetitive, sensory-friendly, and that allow for participants to socialize as they prefer.
      Citation: Autism
      PubDate: 2020-06-24T01:06:00Z
      DOI: 10.1177/1362361320932444
       
  • The health of college students on the autism spectrum as compared to their
           neurotypical peers
    • Authors: Jane D McLeod, Amelia Hawbaker, Emily Meanwell
      Abstract: Autism, Ahead of Print.
      Data from an online survey of undergraduate students at 14 colleges and universities were used to estimate the association of autism with six physical and mental health outcomes, accounting for comorbidity with other disabilities (learning disability, attention deficit hyperactivity disorder, sensory impairment, mobility impairment, mental health disorder, or other disabilities). Autism status was determined based on registration for disability accommodations based on autism and/or self-reports of an autism diagnosis. Health outcomes included self-rated physical health, self-rated mental health, depressive symptoms, symptoms of anxiety, sleep deprivation, and binge drinking. Students with autism reported poorer self-rated physical and mental health, more depressive symptoms, and more symptoms of anxiety than other students, even in the presence of controls for other disabilities. Students with autism also reported a lower likelihood of sleep deprivation and binge drinking than other students. Our results extend previous research on the health correlates of autism by considering additional indicators of health and by incorporating a direct comparison to neurotypical students. They encourage consideration of how health services for students with autism can be improved, especially for mental health problems, and argue for integrated support services that address the full constellation of physical and mental health challenges that students on the spectrum experience.Lay abstractStudies have shown that children and older adults on the autism spectrum experience more physical and mental health problems than their neurotypical peers. Less is known about the physical and mental health of college students on the spectrum. Studying college students is important because young adults on the spectrum are enrolling in college at increasing rates and because health problems can be a barrier to succeeding in college. We collected data from 2820 students at 14 colleges and universities using an online survey, some of whom had registered for accommodations based on autism and others of whom had not. We used the data to compare the physical and mental health of students on the spectrum to their neurotypical peers. Because students with autism often report other disabilities that also affect health, we accounted for whether they experienced a learning disability, attention deficit hyperactivity disorder, sensory impairment, mobility impairment, mental health disorder, or any other disabilities. We assessed health using self-reports of how healthy they were physically and mentally, and reports of depressive symptoms, symptoms of anxiety, sleep deprivation, and binge drinking. We found that students with autism reported poorer physical and mental health, more depressive symptoms, and more symptoms of anxiety even after taking into account other disabilities they may have experienced. They were also less likely to report sleep deprivation and binge drinking. Our results argue for developing specialized services to address the physical and mental health challenges of college students on the spectrum.
      Citation: Autism
      PubDate: 2020-06-18T12:00:52Z
      DOI: 10.1177/1362361320926070
       
  • Transitioning youth with autism spectrum disorders and other special
           health care needs into adult primary care: A provider survey
    • Authors: Jennifer L Ames, Maria L Massolo, Meghan N Davignon, Yinge Qian, Hilda J Cerros, Lisa A Croen
      Abstract: Autism, Ahead of Print.
      Health care continuity during the transition from pediatric to adult care is critical to helping individuals with autism spectrum disorders manage complex medical and psychiatric co-morbidities that start in childhood and evolve with age. We conducted a brief online survey of pediatric and adult providers at Kaiser Permanente Northern California, a large integrated health care delivery system, to assess departmental policies and personal approaches to transitioning patients with special health care needs, including autism spectrum disorders. A total of 354 pediatric (43% response rate) and 715 adult providers (30% response rate) completed the survey. A large majority of departments did not have transition policies in place. Many providers in both primary care and mental health did not provide transition resources, review legal changes, use standardized assessment tools, or communicate with the next/previous provider. Transition planning was usually delayed until age 17 or later. Most providers did not have consistent approaches to the transition of care for youth with special health care needs and may be inadequately prepared to handle the process for patients with autism spectrum disorders. As the population of transition-age youth with autism spectrum disorders continues to grow, there is urgent need to understand how to best implement transition policies that promote early communication between providers and families and track outcomes among transitioning patients with special health care needs.Lay AbstractThe transition from pediatric to adult care is a critical inflection point for the long-term health of youth with autism spectrum disorders and other special health care needs. However, for many patients, their caregivers, and providers, the transition lacks coordination. This survey study demonstrates that pediatric and adult providers struggle to implement many components of transition best practices for youth with autism and other chronic conditions, highlighting the urgent need for enhanced medical coordination and additional transition training and resources.
      Citation: Autism
      PubDate: 2020-06-18T12:00:12Z
      DOI: 10.1177/1362361320926318
       
  • Production and comprehension of pronouns in individuals with autism: A
           meta-analysis and systematic review
    • Authors: Elizabeth G Finnegan, Kristie Asaro-Saddler, Matthew C Zajic
      First page: 3
      Abstract: Autism, Ahead of Print.
      This study compared pronoun use in individuals with autism to their typically developing peers via meta-analysis and systematic review of 20 selected articles to examine differences in overall pronoun usage as well as in personal, ambiguous, possessive, reflexive, and clitic pronoun usage. Summary effects indicated significant differences between individuals with autism and their typically developing peers in the use of pronouns overall as well as in ambiguous, clitic, and reflexive pronoun usage, but not in personal and possessive pronoun usage. Results indicate wide variation in the way individuals with autism use pronouns, and individual outcomes appeared to be moderated by multiple factors, including cognitive ability, first language, and overall language development. Implications and recommendations for assessment and intervention practices are discussed.Lay abstractThis research compared pronoun use in individuals with autism and typically developing peers. Meta-analysis and systematic review of 20 selected articles were used to determine whether significant differences existed in the use of pronouns overall as well as in personal, ambiguous, possessive, reflexive, and clitic pronoun usage. Summary effects indicated significant differences between individuals with autism and their typically developing peers in the use of pronouns overall as well as in ambiguous, clitic, and reflexive pronoun usage, but not in personal and possessive pronoun usage. Results indicate wide variation in the way individuals with autism use pronouns. Since individual outcomes appear to be moderated by multiple factors, including cognitive ability, first language, and overall language development, it is recommended these be considered in assessment and treatment.
      Citation: Autism
      PubDate: 2020-08-25T08:27:43Z
      DOI: 10.1177/1362361320949103
       
  • Anxiety and intellectual functioning in autistic children: A systematic
           review and meta-analysis
    • Authors: Jessica E Mingins, Joanne Tarver, Jane Waite, Chris Jones, Andrew DR Surtees
      First page: 18
      Abstract: Autism, Ahead of Print.
      Autistic children experience higher levels of anxiety than their peers. Making appropriate diagnoses of anxiety disorders and providing effective treatment for these children is particularly difficult. Inconsistent evidence suggests that levels of anxiety in autistic children are related to intellectual functioning. We provide the first meta-analysis of this evidence. A systematic search identified 49 papers for review. These papers included measures of anxiety and intelligence quotient in 18,430 autistic children. Studies employing correlations showed evidence of a significant relationship between intelligence quotient and anxiety in autistic children: children with higher intelligence quotient scored higher on measures of anxiety. Studies directly comparing groups of autistic children with and without intellectual disability also supported this conclusion. Most studies employing other designs also supported this finding. Employing a quality assessment framework identified common threats to validity. Many studies used measures of anxiety that were not validated across the samples they measure. This was most notable for those autistic children with an intellectual disability. It is vital that future research determines whether the identified relationship between intelligence quotient and anxiety reflects something important in the mechanism for anxiety in autistic children, or quantifies the lack of sensitivity of our measures of anxiety across different groups.Lay abstractAutistic children often experience higher levels of anxiety than their peers. It can be difficult to diagnose and treat anxiety disorders in autistic children, in part because of the high degree of variability in their underlying abilities and presentations. Some evidence suggests that autistic children with higher intelligence (as measured by intelligence quotient) experience higher levels of anxiety than autistic children with lower intelligence. However, the evidence is inconsistent, with other papers not finding a difference or finding higher levels of anxiety in autistic children with lower intelligence. In this article, we review existing literature to see whether autistic children with higher intelligence quotients have higher anxiety than autistic children with lower intelligence quotients. A systematic search of the literature was conducted which identified 49 papers on the topic. The methods of all the papers were reviewed using an objective quality assessment framework. When combining the data statistically, there was evidence that autistic children with higher intelligence quotients are more anxious than autistic children with lower intelligence quotients. The quality review raised common weaknesses across studies. Most importantly, few studies used measures of anxiety that have been shown to be valid for children with very low intelligence quotients. Similarly, many studies used measures of anxiety that have not been shown to be valid for autistic children. These factors are important because autistic children and those with low intelligence quotient may experience or understand anxiety differently. Future research should use fully validated measures to test whether high intelligence quotient is associated with high levels of anxiety in autistic children.
      Citation: Autism
      PubDate: 2020-11-17T04:07:33Z
      DOI: 10.1177/1362361320953253
       
  • Construct validity of the First-Year Inventory (FYI Version 2.0) in
           12-month-olds at high-risk for Autism Spectrum Disorder
    • Authors: Helen Y Lee, Cheryl Vigen, Lonnie Zwaigenbaum, Isabel M Smith, Jessica Brian, Linda R. Watson, Elizabeth R. Crais, Grace T Baranek
      First page: 33
      Abstract: Autism, Ahead of Print.
      This study examines the construct validity of the First-Year Inventory 2.0 with respect to other established instruments in a sample of high-risk infant siblings of children with Autism Spectrum Disorder. The First-Year Inventory 2.0 is a parent-report screening instrument designed to identify 12-month-old infants at risk for an eventual diagnosis of Autism Spectrum Disorder and consists of two domains: Social-Communication and Sensory-Regulatory. Although the First-Year Inventory 2.0’s screening psychometrics have been examined, its construct validity has not been investigated. In a sample of 112 high-risk 12-month-olds, we examined the First-Year Inventory 2.0’s associations with the Autism Observation Scale for Infants, an observer-based Autism Spectrum Disorder screener, and with other developmental instruments measuring similar areas in social communication and regulatory functioning in young children. Findings generally supported the First-Year Inventory 2.0 associations with other instruments in expected ways. The First-Year Inventory 2.0 Social-Communication domain was notably associated with the Autism Observation Scale for Infant’s total score and with language and communication domains of the Vineland and the Mullen. The Sensory-Regulatory domain showed minimal associations with other instruments that only had a few sensory items. Considering different objectives and strengths of assessments, researchers and clinicians are encouraged to utilize a variety of instruments in a comprehensive evaluation of a child.Lay abstractThe First-Year Inventory 2.0 is a parent-report screening instrument designed to identify 12-month-old infants at risk for an eventual diagnosis of Autism Spectrum Disorder. This instrument focuses on Social-Communication and Sensory-Regulatory areas of infant behavior. Although the First-Year Inventory 2.0 screening performance has been previously studied, its validity has not been examined. Establishing validity of an instrument is important because it supports the effectiveness and the reliability of the instrument. In this study, we examined relationship between the First-Year Inventory 2.0 (Social-Communication and Sensory-Regulatory areas) and other instruments that measure similar areas of infant behavior in a sample of high-risk infant siblings of children with Autism Spectrum Disorder. These other instruments share some common aims and theoretical areas with the First-Year Inventory 2.0: the Autism Observation Scale for Infants, the Mullen Scales of Early Learning, the Vineland Adaptive Behavior Scales-II, and the Infant Behavior Questionnaire. Findings generally supported the validity of the First-Year Inventory 2.0 with other instruments. In particular, the Social-Communication area of the First-Year Inventory 2.0 showed greater commonality with other instruments than in the Sensory-Regulatory area. The Sensory-Regulatory area seemed to be a unique feature of the First-Year Inventory 2.0 instrument. Considering different aims and strengths of assessments, researchers and clinicians are encouraged to utilize a variety of instruments in a comprehensive evaluation of a child.
      Citation: Autism
      PubDate: 2020-08-27T07:48:23Z
      DOI: 10.1177/1362361320947325
       
  • Parent utilization of ImPACT intervention strategies is a mediator of
           proximal then distal social communication outcomes in younger siblings of
           children with ASD
    • Authors: Paul J Yoder, Wendy L Stone, Sarah R Edmunds
      First page: 44
      Abstract: Autism, Ahead of Print.
      Younger siblings of children with autism spectrum disorders (HR-Sibs) are at elevated risk for social communication deficits and language delays. One way to mitigate this risk early, before these deficits and delays become clear or impairing, may be to equip parents to use the strategies taught through the Improving Parents as Communication Teachers (ImPACT) intervention. In this randomized control trial, 97 HR-Sibs (mean age 14 months) and their primary caregiver were randomized to either ImPACT or a business-as-usual control group. Our a priori, preregistered hypothesis was that parents’ participation in ImPACT training would indirectly attenuate younger siblings’ social communication challenges 9 months later by sequentially increasing parents’ use of ImPACT strategies immediately after the intervention phase and by improving children’s midpoint proximal skills (e.g. motor imitation or intentional communication). Results supported this prediction.Lay abstractLater born siblings of children with autism spectrum disorders (ASD) are at elevated risk for language delay or ASD. One way to manage this risk may be for parents to use techniques taught in Improving Parents as Communication Teachers (ImPACT) with the younger siblings during the period in which language delay and ASD may be too subtle to be diagnosed. ImPACT targets children’s play, imitation, and communication skills. Improvement in these skills may reduce the severity of language delays and social communication deficits associated with ASD. In this study, 97 younger siblings of children with ASD and their primary parents were randomly assigned to ImPACT or a control group. We measured whether parents used ImPACT teaching strategies and whether children used the skills that ImPACT targets. We also measured children’s later language ability and social communication skills. The results confirmed our predictions that parents’ use of ImPACT strategies improves language ability by improving children’s motor imitation and communication skills. Use of ImPACT also had a positive effect on children’s language delay and ASD symptoms, supporting the clinical value of the findings. The study’s methodological strengths make this one of the most rigorous tests of ImPACT and supports one way to manage the risk of language delay and ASD in younger siblings of children with ASD.
      Citation: Autism
      PubDate: 2020-08-19T04:26:24Z
      DOI: 10.1177/1362361320946883
       
  • For which younger siblings of children with autism spectrum disorder does
           parent-mediated intervention work'
    • Authors: Paul J Yoder, Wendy L Stone, Sarah R Edmunds
      First page: 58
      Abstract: Autism, Ahead of Print.
      In this second of two primary papers, we examined moderators of treatment effects for younger siblings of children with autism spectrum disorders whose parents were taught to use a parent-implemented intervention called “Improving Parents As Communication Teachers”. Investigators randomized 97 high-risk siblings and their primary parent to either the Improving Parents As Communication Teachers or control group, used intent-to-treat analysis, and used assessors and coders who were blinded to group assignment. We hypothesized that a cumulative risk score (incorporating younger siblings’ sex, multiplex status, and behavioral risk) would moderate the effect of Improving Parents As Communication Teachers on younger siblings’ proximal skills related to their continuously measured communication challenges. Pre-intervention level of parents’ depressive symptoms was the proposed moderator of Improving Parents As Communication Teachers on parenting-related stress and parenting efficacy. In high-risk siblings with no additional risk factors (i.e. girls with only one older sibling with autism spectrum disorder and who score at low risk on an autism spectrum disorder screen), parental receipt of Improving Parents As Communication Teachers training had indirect effects on children’s expressive language ability or autism spectrum disorder diagnosis through earlier effects on high-risk siblings’ intentional communication or expressive vocabulary. “Improving Parents As Communication Teachers” intervention did not show moderated or total effects on parenting-related stress or parenting efficacy.Lay AbstractIn this second of two primary papers, we examined two pre-intervention characteristics that might describe for whom a parent-implemented intervention, “Improving Parents As Communication Teachers,” worked. Investigators randomized 97 high-risk siblings and their primary parent to either the Improving Parents As Communication Teachers or control group, used intent-to-treat analysis, and used assessors and coders who were blinded to group assignment. We predicted that a combined risk score (incorporating young siblings’ sex, multiplex status, and behavioral risk) would describe the subgroup for whom Improving Parents As Communication Teachers affected the targeted skills related to reducing communication challenges. We also predicted that pre-intervention level of parents’ depressive symptoms would describe the parents whose parenting stress and effectiveness as parents would be improved by learning to use Improving Parents As Communication Teachers. In girls with only one older sibling with autism spectrum disorder and who scored at low risk on an autism spectrum disorder screen, parental receipt of Improving Parents As Communication Teachers training had an indirect effect on children’s expressive language ability or autism spectrum disorder diagnosis through earlier effects on high-risk siblings’ intentional communication or expressive vocabulary. We did not confirm our prediction regarding Improving Parents As Communication Teachers’ effect on parenting-related stress or sense of parenting effectiveness.
      Citation: Autism
      PubDate: 2020-08-19T04:26:39Z
      DOI: 10.1177/1362361320943373
       
  • Timing of diagnosis, depression and self-harm in adolescents with autism
           spectrum disorder
    • Authors: Mariko Hosozawa, Amanda Sacker, Noriko Cable
      First page: 70
      Abstract: Autism, Ahead of Print.
      This exploratory study aimed to explore the association between depression and self-harming behaviour in adolescence and the timing of diagnosis for autism spectrum disorder. We analysed data on 11,320 14 year olds, including 396 children with autism spectrum disorder, from the UK Millennium Cohort Study. Exposures were the timing of diagnosis for autism spectrum disorder confirmed by parental report at ages 5, 7, 11 and 14. Outcomes were depression measured by the Short Mood and Feelings Questionnaire (scores ⩾12) and self-report of self-harming behaviour, both assessed at age 14. Data were analysed using multivariable regression analysis. 91% of the autism spectrum disorder group had within-typical-range cognitive ability. After adjusting for child and family confounders, there was a positive linear trend between diagnostic age and depression, with children diagnosed between ages 7 and 11 and children diagnosed after age 11 showing increased symptoms (odds ratio = 2.21 and 3.58, respectively). A similar trend was observed for self-harming behaviour, with children diagnosed after age 11 showing the strongest association (odds ratio = 3.16). These results suggest the importance of earlier diagnosis in preventing secondary mental health problems in this population, particularly among those without cognitive delays. Further studies replicating across a wider intellectual spectrum and clarifying the underlying mechanism are warranted.Lay AbstractChildren with autism spectrum disorder are at increased risk of depression and self-harming behaviours. The question of whether timing of diagnosis of autism spectrum disorder is associated with these consequences in adolescence has not yet been studied. This exploratory study aimed to explore the association between depression and self-harming behaviour in adolescence and the parent-reported timing of diagnosis for autism spectrum disorder using a large population-based cohort in the United Kingdom. Most of the children with autism spectrum disorder in our study had within-typical-range cognitive ability. We found a linear association between timing of autism spectrum disorder diagnosis and depression and self-harming behaviour in adolescence; later diagnosis of autism spectrum disorder, particularly diagnosis in adolescence, was associated with the increased risk of self-reported depressive symptoms and self-harming behaviour in adolescence among children with autism spectrum disorder. Our findings, albeit observational, suggest that interventions targeting the earlier diagnosis of autism spectrum disorder and approaches to improve person–environment fit may help prevent secondary mental health problems in this population, particularly among those without cognitive delays and those diagnosed late. Further studies replicating across a wider intellectual spectrum and clarifying the underlying mechanism are warranted.
      Citation: Autism
      PubDate: 2020-08-08T09:03:55Z
      DOI: 10.1177/1362361320945540
       
  • Parent-identified strengths of autistic youth
    • Authors: Nick Warren, Bridges Eatchel, Anne V Kirby, Marissa Diener, Cheryl Wright, Valerie D’Astous
      First page: 79
      Abstract: Autism, Ahead of Print.
      There is a need for strengths-based intervention approaches for autistic youth during the transition to adulthood. In the current study, we explored parent perspectives about youth strengths during adolescence. We combined data from three studies which included semi-structured interviews about parents’ perspectives on preparing for adulthood with autistic youth. Total participants included 39 parents of 41 autistic youth (ages 12–19 years, 88% male). Parents of autistic youth described many strengths of their children in the context of conversations about the transition to adulthood. Thematic analysis revealed three subthemes under the broad theme of parental perceptions of strengths: diverse strengths and skills, strengths counterbalanced by challenges, and strengths with supports. Diverse strengths and skills were further categorized using content analysis and included intelligence, creativity, physical abilities, and self-care skills, which notably include some areas often perceived as weaknesses for autistic people. The findings demonstrate that parents are an important source of information about youth strengths during transition planning processes. Understanding the types of strengths that parents observe in their autistic sons and daughters can help inform the development of strengths-based interventions capable of supporting the transition to adulthood.Lay abstractAutism is a condition frequently characterized by social and communication challenges. Because most research focuses on understanding and reducing challenges, less is known about the strengths of autistic individuals. This is especially true of those who are transitioning into adulthood. We designed this research study to provide information about how parents perceive the strengths of their autistic adolescent children prior to the transition. We reviewed 39 parent interviews from previous research about how they prepare their autistic sons and daughters for adulthood. Without prompting, parents identified many strengths of their autistic children. Diverse strengths and skills they identified included intelligence, creativity, physical abilities, and self-care skills. These strengths are interesting, as they cover traits that are often thought of as areas of difficulty for autistic youth. However, parents also talked about strengths alongside challenges, and how specific supports would be needed to help their sons and daughters fully realize their strengths. These findings are important, as they help us know more about the strengths of autistic youth and how strengths can be supported when preparing for adulthood. Our findings also help reveal strengths that are particularly apparent during the transition to adulthood.
      Citation: Autism
      PubDate: 2020-08-06T04:51:44Z
      DOI: 10.1177/1362361320945556
       
  • Cross-lagged model of bullying victimization and mental health problems in
           children with autism in middle to older childhood
    • Authors: Geovanna Rodriguez, Kim Drastal, Sigan L Hartley
      First page: 90
      Abstract: Autism, Ahead of Print.
      Youth with autism spectrum conditions have been shown to be at an increased risk for bullying victimization. The overall aim of this study was to identify factors associated with increased risk for bullying victimization in youth with autism during middle childhood to early adolescence (aged 5–12 years) and to explore the potential time-ordered associations between bullying victimization and mental health problems 12 months later. The average age of the youth with autism was 7.90 years (SD = 2.33), 86% were male, 34.6% had an intellectual disability, and 84% were White, non-Hispanic. Youth with autism who experienced bullying victimization (vs no victimization) were older in age, had more severe autism symptoms, and higher levels of internalizing and externalizing mental health problems at study onset. Using two cross-lagged structural equation models, the associations between maternal report of youth bullying victimization and teacher report of youth mental health problems using two waves of data were tested. Internalizing and externalizing mental health problems at Time 1 did not relate to change in likelihood of being bullied 1 year later. In contrast, bullying victimization at Time 1 was associated with an increase in internalizing mental health problems (β = 0.24, p 
      Citation: Autism
      PubDate: 2020-09-12T07:37:45Z
      DOI: 10.1177/1362361320947513
       
  • Disparities in autism spectrum disorder diagnoses among 8-year-old
           children in Colorado: Who are we missing'
    • Authors: Trenesha L Hill, Tiffany C White, Bruno J Anthony, Judy Reaven, Bryn Harris, Nuri Reyes, Laura G Anthony
      First page: 102
      Abstract: Autism, Ahead of Print.
      There is often a large time gap between caregivers’ initial concerns and the diagnosis of autism spectrum disorder. The current study aimed to identify factors associated with missed or delayed autism spectrum disorder diagnoses among children in Colorado. In a surveillance-based sample of 8-year-old children with autism spectrum disorder (N = 572), we examined differences between children who were identified with autism spectrum disorder by a community provider and/or were eligible for special education services under an autism eligibility (documented diagnosis) and children who were first identified with autism spectrum disorder through a systematic record review (newly identified). Compared to documented diagnosis children, newly identified children were more likely to be female, aggressive, and argumentative. They were less likely to have had a developmental regression, sleep abnormalities, or an autism screener or diagnostic measure in their records. Newly identified children also had a poorer quality of information in their records. Furthermore, among documented diagnosis children, variations in clinical presentations were associated with significantly different mean ages at autism spectrum disorder diagnosis; children who showed early delays, motor abnormalities, hyperactivity and attention deficits, and odd responses to sensory stimuli received a diagnosis much earlier than documented diagnosis children with other clinical presentations.Lay abstractAlthough autism can be reliably diagnosed as early as 2 years of age, many children are not diagnosed with autism until much later. We analyzed data to determine why many of the 8-year-old children who resided in Colorado and were identified as having autism through a review of their health and/or educational records did not have a documented clinical diagnosis of autism and were not eligible for special education services under an autism eligibility. We found that children who did not have a documented clinical diagnosis of autism and were not eligible for special education services under an autism eligibility were more likely to be female, aggressive, and argumentative. They had a poorer quality of information in their records and were less likely to have had a developmental regression, sleep problems, or an autism screener or diagnostic measure in their records. These results suggest that the symptoms characteristic of autism among this group of children may have been attributed to another disorder and that clinicians may be able to recognize autism more readily in children with more functional impairment and those who experience a developmental regression. We also discovered that differences in symptom presentations among children who had a documented clinical diagnosis of autism and/or were eligible for special education services under an autism eligibility were associated with different ages at autism diagnosis.
      Citation: Autism
      PubDate: 2020-08-29T06:34:35Z
      DOI: 10.1177/1362361320950058
       
  • Assessment of Sesame Street online autism resources: Impacts on parental
           implicit and explicit attitudes toward children with autism
    • Authors: Cheryl L Dickter, Joshua A Burk, Laura Gutermuth Anthony, Hillary A Robertson, Alyssa Verbalis, Sydney Seese, Yetta Myrick, Bruno J Anthony
      First page: 114
      Abstract: Autism, Ahead of Print.
      The current study sought to characterize implicit bias toward children with autism and examine whether viewing educational materials about autism would change attitudes toward children with autism. A website developed by Sesame Street containing information about autism and resources for families was distributed to parents of children with autism (n = 473) and parents of children without autism (n = 707). Pre- and post-test measures of implicit bias toward children with autism; explicit attitudes and knowledge about autism; and parenting confidence, strain, and stigma were completed before and after the website was presented. Results indicated that parents of children with autism showed less implicit bias compared with those of non-autistic children during the pre-test, but the groups did not differ at the post-test. Parents without autistic children and those with more negative explicit attitudes showed a greater reduction in implicit bias from the pre- to the post-test. In addition, for parents of children with autism, a more positive change in explicit attitudes and increased knowledge from the pre- to the post-test was associated with more empowerment at the post-test. Together, our findings suggest that the online educational resources can reduce implicit bias against children with autism and help mitigate some of the psychological issues associated with parenting children with autism.
      Citation: Autism
      PubDate: 2020-08-26T05:45:54Z
      DOI: 10.1177/1362361320949346
       
  • Improving visual perspective-taking performance in children with autism
           spectrum conditions: Effects of embodied self-rotation and object-based
           mental rotation strategies
    • Authors: Pingping Ni, Lingfeng Xue, Jiajing Cai, Minjie Wen, Jie He
      First page: 125
      Abstract: Autism, Ahead of Print.
      Visual perspective-taking is the ability to perceive the world from another person’s perspective, and research on visual perspective-taking ability in children with autism spectrum conditions yielded inconsistent results. To solve a visual perspective-taking task, people can mentally rotate themselves to another person’s location (embodied self-rotation strategy) or else rotate the object toward themselves (object-based mental rotation strategy). Previous interventions for autistic individuals have mainly focused on embodied self-rotation strategy, the visual perspective-taking mechanism in neurotypicals. This study examined the effects of both embodied self-rotation and object-based mental rotation strategies in improving visual perspective-taking performance in 34 autistic children and 34 ability-matched neurotypical children. All children completed three tasks: one measuring baseline visual perspective-taking performance, while the other two measuring visual perspective-taking performance after instructions in embodied self-rotation and object-based mental rotation strategies. The results indicated that autistic children had difficulty in baseline visual perspective-taking tasks. After a brief strategy learning period, autistic children benefited similarly from both embodied self-rotation and object-based mental rotation instructions, suggesting that there are various possible ways to improving autistic children’s perspective taking, and that further interventions for autistic children could consider combining different strategies that better suit their autistic traits.Lay abstractWhen answering how the same object might appear to others in different locations, people can provide answers by mentally putting themselves into another person’s location using the embodied self-rotation strategy or by rotating the target object toward themselves using the object-based mental rotation strategy. In this study, after learning the embodied self-rotation or object-based mental rotation strategies, autistic children improved their visual perspective-taking performance, which is believed to be impaired or delayed in autistic individuals. We recruited 34 autistic children and an equal number of ability-matched typical children and examined their visual perspective-taking performance at baseline and after learning the embodied self-rotation and object-based mental rotation strategies. As previous visual perspective-taking and other social cognition interventions for autistic individuals have primarily focused on the embodied self-rotation strategy, showing moderate effectiveness and limited generalizability, we explored the effects of both embodied self-rotation and object-based mental rotation strategies for improving perspective-taking performance and discussed their implications in this study. The results showed that autistic children had a lower performance at baseline compared with typical children; however, they were still sensitive to both embodied self-rotation and object-based mental rotation strategies. Unlike typical children, who gained more from the embodied self-rotation strategy, autistic children benefited similarly from the two strategies. This suggests that there are multiple ways to helping autistic children overcome their difficulty in perspective-taking tasks. Future interventions for autistic children could consider combining various strategies that better suit their autistic traits.
      Citation: Autism
      PubDate: 2020-08-28T06:08:21Z
      DOI: 10.1177/1362361320949352
       
  • Eye contact perception in high-functioning adults with autism spectrum
           disorder
    • Authors: Shota Uono, Sayaka Yoshimura, Motomi Toichi
      First page: 137
      Abstract: Autism, Ahead of Print.
      The present study investigated how the eye contact perception of ingroup and outgroup faces by Japanese adults with high-functioning autism spectrum disorder differed from that of age-, sex-, and IQ-matched typically developing individuals. The autism spectrum disorder and typically developing individuals were equally likely to perceive subtly averted gazes as self-directed gazes. In both groups, the frequency with which self-directed gazes were perceived decreased as gaze aversion increased. In general, individuals with autism spectrum disorder were equally capable of perceiving a self-directed gaze as typically developing individuals. However, typically developing individuals, but not individuals with autism spectrum disorder, were more likely to perceive self-directed gazes from ingroup faces than from outgroup faces. Stimuli ratings revealed that individuals with autism spectrum disorder, but not those with typically developing, gave higher warmth ratings to ingroup faces with averted gazes and outgroup faces with direct gazes compared to other types of face stimuli, suggesting atypical affective experiences in response to ingroup and outgroup faces in autism spectrum disorder. These results suggest that individuals with autism spectrum disorder did not show an ingroup bias for the perception of a self-directed gaze, and raise the possibility that an atypical emotional experience contributes to the diminished ingroup bias for the perception of a self-directed gaze.Lay abstractThe detection of a self-directed gaze is often the starting point for social interactions and a person who feels as if they are being watched can prepare to respond to others’ actions irrespective of the real gaze direction because the other person may likely be motivated to approach. Although many studies demonstrated that individuals with autism spectrum disorder have difficulty discriminating gaze direction, it remains unclear how the perception of self-directed gaze by individuals with autism spectrum disorder differs from that of age-, sex-, and IQ-matched typically developing individuals. Participants observed faces with various gaze directions and answered whether the person in the photograph was looking at them or not. Individuals with and without autism spectrum disorder were just as likely to perceive subtle averted gazes as self-directed gazes. The frequency of perceiving a self-directed gaze decreased as gaze aversion increased in both groups and, in general, individuals with autism spectrum disorder showed a comparable ability to perceive a self-directed gaze as that of typically developing individuals. Interestingly, considering face membership of photographs (ingroup or outgroup faces), typically developing individuals, but not individuals with autism spectrum disorder, were more likely to perceive self-directed gazes from ingroup faces than from outgroup faces. However, individuals with autism spectrum disorder had different affective experiences in response to ingroup and outgroup faces. These results suggest that individuals with autism spectrum disorder did not show an ingroup bias for the perception of a self-directed gaze, and raise a possibility that an atypical emotional experience contributes to the diminished ingroup bias.
      Citation: Autism
      PubDate: 2020-08-27T07:48:09Z
      DOI: 10.1177/1362361320949721
       
  • ‘I’m not just a guinea pig’: Academic and community perceptions of
           participatory autism research
    • Authors: Jacquiline den Houting, Julianne Higgins, Kathy Isaacs, Joanne Mahony, Elizabeth Pellicano
      First page: 148
      Abstract: Autism, Ahead of Print.
      Despite calls for increased community engagement in autism research, the published evidence base suggests that participatory autism research remains rare. This study examined the extent and nature of community engagement in Australian research projects commissioned by the Autism CRC. Data were gathered using an online survey, comprising quantitative scale items and qualitative free-text responses, which was completed by 64 academic partners and 15 community partners. Quantitative findings indicated that autism research stakeholders in Australia are largely supportive of community engagement in research and have had positive experiences of participatory research. These findings were not wholly corroborated by the qualitative findings, however, which suggested that participants lacked understanding of participatory research, and held attitudes that may hinder the conduct of successful participatory research. Systemic issues within research settings were also perceived to impede community engagement in research. Both academic and community partners would benefit from better understanding of participatory research approaches, paired with practical and epistemological shifts at the systemic level, to ensure that future community engagement in autism research is respectful, equitable and beneficial to all stakeholders.Lay abstractParticipatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants’ own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well.
      Citation: Autism
      PubDate: 2020-08-28T06:08:01Z
      DOI: 10.1177/1362361320951696
       
  • Knowing me, knowing you: Spontaneous use of mentalistic language for self
           and other in autism
    • Authors: Alexandra Zinck, Uta Frith, Peter Schönknecht, Sarah White
      First page: 164
      Abstract: Autism, Ahead of Print.
      Recent studies on mentalizing have shown that autistic individuals who pass explicit mentalizing tasks may still have difficulties with implicit mentalizing tasks. This study explores implicit mentalizing by examining spontaneous speech that is likely to contain mentalistic expressions. The spontaneous production of meta-statements provides a clear measure for implicit mentalizing that is unlikely to be learned through experience. We examined the self- and other-descriptions of highly verbally able autistic and non-autistic adults in terms of their spontaneous use of mentalistic language and meta-representational utterances through quantitative and qualitative analysis. We devised a hierarchical coding system that allowed us to study the types of statements produced in comparable conditions for the self and for a familiar other. The descriptions of autistic participants revealed less mentalistic content relating to psychological traits and meta-statements. References to physical traits were similar between groups. Within each group, participants produced a similar pattern of types of mental utterance across ‘self’ and ‘other’ conditions. This suggests that autistic individuals show a unique pattern of mental-state-representation for both self and other. Meta-statements add a degree of complexity to self- and other-descriptions and to the understanding of mental states; their reduction in autism provides evidence for implicit mentalizing difficulties.Lay abstractAutistic people can have difficulties in understanding non-autistic people’s mental states such as beliefs, emotions and intentions. Although autistic adults may learn to overcome difficulties in understanding of explicit (overt) mental states, they may nevertheless struggle with implicit (indirect) understanding of mental states. This study explores how spontaneous language is used in order to specifically point to this implicit (indirect) understanding of mental states. In particular, our study compares the spontaneous statements that were used in descriptions of oneself and a familiar other person. Here, we found that autistic and non-autistic adults were comparable in the number of statements about physical traits they made. In contrast, non-autistic adults made more statements about mentalistic traits (about the mental including psychological traits, relationship traits and statements reflecting about these) both for the self and the other. Non-autistic and autistic adults showed no difference in the number of statements about relationships but in the number of statements about psychological traits and especially in the statements reflecting on these. Each group showed a similar pattern of kinds of statements for the self and for the other person. This suggests that autistic individuals show the same unique pattern of description in mentalistic terms for the self and another person. This study also indicates that investigating spontaneous use of language, especially for statements reflecting about mental states, enables us to look into difficulties with implicit (indirect) understanding of mental states.
      Citation: Autism
      PubDate: 2020-08-27T07:47:50Z
      DOI: 10.1177/1362361320951017
       
  • Parental perspectives of functioning in their children with autism
           spectrum disorder: A global scoping review
    • Authors: Marisa Viljoen, Soheil Mahdi, James Shelly, Petrus J de Vries
      First page: 176
      Abstract: Autism, Ahead of Print.
      No reviews to date have summarized the views of parents on the functional challenges and/or strengths of their children with autism spectrum disorder. We set out to perform a scoping review aiming (a) to identify and collate global results to provide a broad description of parental perspective of functioning research and (b) to summarize these using the International Classification of Functioning Disability and Health–Child and Youth version framework. The International Classification of Functioning Disability and Health provides a language to describe the functional skills of an individual with a health condition in terms of their body structures, body functions, activities and participation, their environmental and personal factors. Given the influence that context has on functioning, and the potential impact of economic status on availability of resources, we were specifically interested to compare perspectives from high-income countries and low-/middle-income countries. Two researchers conducted a comprehensive search of English peer-reviewed studies published between 1990 and June 2016. Articles were accessed and summarized using thematic analysis. Meaningful phrases were extracted from key findings and linked to second-level International Classification of Functioning Disability and Health–Child and Youth categories following international linking rules. Thirty-three studies were identified of which only six originated from low/middle-income countries (n = 6/33, 18%). Two studies compared perspectives from low-/middle-income countries and high-income countries (n = 2/33, 6%). Functional themes from high-income countries included a range across the International Classification of Functioning Disability and Health–Child and Youth bio-psychosocial framework while functional themes from low-/middle-income countries were predominantly focused on environmental factors. We propose further research should consider a systematic comparison of high-income and low/middle-income countries across functional categories to get a more accurate impression of the impact of context on functioning.Lay abstractNo paper to date has summarized parents’ views on the functional challenges and/or strengths of their children with autism spectrum disorder. In this review we set out to perform a scoping review aiming to (a) find and compare existing research from around the globe on parental perception of functioning and (b) summarize results from these papers using the International Classification of Functioning Disability and Health–Child and Youth version framework. Since we know that the place and circumstances we live in can have a significant influence on our functioning in daily life, we were specifically interested in comparing perceptions from high-income countries and low-/middle-income countries. Two researchers conducted a comprehensive search of English studies published between 1990 and June 2016. Papers were summarized and key findings were linked to International Classification of Functioning Disability and Health–Child and Youth categories. Thirty-three studies were identified, of which most were conducted in high-income countries (n = 25/33, 76%) with only six studies in low/middle-income countries (n = 6/33, 18%). Two studies compared views from low/middle-income and high-income countries (n = 2/33, 6%). Functional themes from high-income countries included a range across the International Classification of Functioning Disability and Health–Child and Youth framework while functional themes from low-/middle-income countries were mostly focused on environmental factors. It was difficult to directly compare studies from low/middle-income and high-income countries because they investigated and discussed such different parts of functioning. We suggest that future research should use an approach that will allow researchers to directly compare functional categories in order to get a more accurate impression of the impact of context on functioning.
      Citation: Autism
      PubDate: 2020-08-31T04:38:38Z
      DOI: 10.1177/1362361320950055
       
  • Quantity and quality of empathic responding by autistic and non-autistic
           adolescent girls and boys
    • Authors: Carolien Rieffe, Rachel O’Connor, Anne Bülow, Danique Willems, Laura Hull, Felicity Sedgewick, Lex Stockmann, Els Blijd-Hoogewys
      First page: 199
      Abstract: Autism, Ahead of Print.
      Empathy evokes support for the person in distress, and thus strengthening social cohesion. The question is to what extent empathic reactions can be observed in autistic adolescents and autistic girls in particular, since there is evidence that they have better social skills than boys, which might hinder their recognition as autistic. We examined 193 adolescents (autistic/non-autistic boys/girls) during an in vivo task in which the experimenter hurt herself. In line with our predictions, no group or gender differences appeared related to their attention for the event; yet autistic girls and boys showed less visible emotional arousal, indicative of less affective empathy. Autistic girls and boys reacted by comforting the experimenter equally often as their non-autistic peers, but autistic boys seemed to address the problem more often than any other group; while girls (autistic and non-autistic) more often addressed the emotion of the person in need. Our findings highlight that empathic behaviour – to some extent – seems similar between autistic and non-autistic boys and girls. However, differences exist, in terms of expressed emotional arousal and gender-specific comforting styles. Autistic girls’ higher levels of emotion-focused comforting could be explained by well-developed social skills, camouflaging, or emotional investment in relationships with others.Lay abstractEmpathy is an important feature to feel for another person, evoking social support for the person in distress, and thus strengthening social cohesion. The question is to what extent empathic reactions can also be observed in autistic adolescents and autistic girls in particular, since their often mentioned good social skills might prevent their direct social environment from recognizing their autism. We examined 194 adolescents (autistic and non-autistic boys and girls) during an in vivo task in which the experimenter pretended to hurt herself while closing a binder. All responses by the participants were videotaped and coded by two independent coders. In line with our predictions, no group or gender differences appeared related to their attention for the event; yet autistic girls and boys showed less visible emotional arousal, which could indicate less affective empathy (feeling for someone), or which could indicate that autistic adolescents know less well how to show empathy. Autistic girls and boys reacted by comforting the experimenter equally often as their non-autistic peers, but autistic boys addressed the problem more often than any other group, while girls (autistic and non-autistic) more often addressed the emotion of the person in need. Our findings highlight that empathic behaviour is remarkably similar between autistic and non-autistic boys and girls. Indeed, only subtle differences exist, in terms of expressed emotional arousal and gender-specific comforting styles. Autistic girls’ higher levels of emotion-focused comforting could be explained by well-developed social skills, camouflaging, or emotional investment in relationships with others.
      Citation: Autism
      PubDate: 2020-09-24T08:58:12Z
      DOI: 10.1177/1362361320956422
       
  • Effects of being watched on eye gaze and facial displays of typical and
           autistic individuals during conversation
    • Authors: Roser Cañigueral, Jamie A Ward, Antonia F de C Hamilton
      First page: 210
      Abstract: Autism, Ahead of Print.
      Communication with others relies on coordinated exchanges of social signals, such as eye gaze and facial displays. However, this can only happen when partners are able to see each other. Although previous studies report that autistic individuals have difficulties in planning eye gaze and making facial displays during conversation, evidence from real-life dyadic tasks is scarce and mixed. Across two studies, here we investigate how eye gaze and facial displays of typical and high-functioning autistic individuals are modulated by the belief in being seen and potential to show true gaze direction. Participants were recorded with an eye-tracking and video-camera system while they completed a structured Q&A task with a confederate under three social contexts: pre-recorded video, video-call and face-to-face. Typical participants gazed less to the confederate and produced more facial displays when they were being watched and when they were speaking. Contrary to our hypotheses, eye gaze and facial motion patterns in autistic participants were overall similar to the typical group. This suggests that high-functioning autistic participants are able to use eye gaze and facial displays as social signals. Future studies will need to investigate to what extent this reflects spontaneous behaviour or the use of compensation strategies.Lay abstractWhen we are communicating with other people, we exchange a variety of social signals through eye gaze and facial expressions. However, coordinated exchanges of these social signals can only happen when people involved in the interaction are able to see each other. Although previous studies report that autistic individuals have difficulties in using eye gaze and facial expressions during social interactions, evidence from tasks that involve real face-to-face conversations is scarce and mixed. Here, we investigate how eye gaze and facial expressions of typical and high-functioning autistic individuals are modulated by the belief in being seen by another person, and by being in a face-to-face interaction. Participants were recorded with an eye-tracking and video-camera system while they completed a structured Q&A task with a confederate under three social contexts: pre-recorded video (no belief in being seen, no face-to-face), video-call (belief in being seen, no face-to-face) and face-to-face (belief in being seen and face-to-face). Typical participants gazed less to the confederate and made more facial expressions when they were being watched and when they were speaking. Contrary to our hypotheses, eye gaze and facial expression patterns in autistic participants were overall similar to the typical group. This suggests that high-functioning autistic participants are able to use eye gaze and facial expressions as social signals. Future studies will need to investigate to what extent this reflects spontaneous behaviour or the use of compensation strategies.
      Citation: Autism
      PubDate: 2020-08-28T06:08:10Z
      DOI: 10.1177/1362361320951691
       
  • Inhibition in developmental disorders: A comparison of inhibition profiles
           between children with autism spectrum disorder,
           attention-deficit/hyperactivity disorder, and comorbid symptom
           presentation
    • Authors: Amanda Cremone-Caira, Katherine Trier, Victoria Sanchez, Brooke Kohn, Rachel Gilbert, Susan Faja
      First page: 227
      Abstract: Autism, Ahead of Print.
      Thirty to 80% of children with autism spectrum disorder also have symptoms of attention-deficit hyperactivity disorder. Many children with autism spectrum disorder and attention-deficit hyperactivity disorder experience difficulties carrying out goal-directed behaviors, particularly when it comes to inhibiting responses. The aim of this study was to better understand the relative strengths and weaknesses across different measures of inhibition in children with autism spectrum disorder, attention-deficit hyperactivity disorder, autism spectrum disorder + attention-deficit hyperactivity disorder, and children who are typically developing. Inhibition of distracting information, motor responses, response speed, and selections with the potential for greater loss was measured in 155 school-aged children across these four groups. Results indicate that, for children with autism spectrum disorder + attention-deficit hyperactivity disorder, inhibition varied across the different outcomes assessed. Relative to typically developing children, children with autism spectrum disorder + attention-deficit hyperactivity disorder showed greater difficulty inhibiting behavioral responses. Conversely, inhibition of distracting information and strategic slowing of response speed differed between the children with autism spectrum disorder + attention-deficit hyperactivity disorder and those with either autism spectrum disorder or attention-deficit hyperactivity disorder. Avoidance of potential losses did not significantly differ between the four groups. The unique pattern of inhibition abilities shown in the autism spectrum disorder + attention-deficit hyperactivity disorder group suggests the need for special consideration in the context of targeted intervention.Lay AbstractMany children with autism spectrum disorder (ASD) also have symptoms of attention-deficit hyperactivity disorder (ADHD). Children with ASD and ADHD often experience difficulties with inhibition. This study had the goal of understanding inhibition in children with ASD, ADHD, ASD + ADHD, and children who are typically developing (TD) using tasks that measured several aspects of inhibition. Results indicate that children with ASD + ADHD had greater difficulty inhibiting behavioral responses than TD children. Children with ASD + ADHD also differed from children with ASD and with ADHD in their inhibition of distracting information and strategic slowing of response speed. The four groups did not differ in their avoidance of potential losses. Children with ASD + ADHD exhibit a unique profile of inhibition challenges suggesting they may benefit from targeted intervention matched to their abilities.
      Citation: Autism
      PubDate: 2020-09-25T05:53:33Z
      DOI: 10.1177/1362361320955107
       
  • The role of early social motivation in explaining variability in
           functional language in toddlers with autism spectrum disorder
    • Authors: Pumpki L Su, Sally J Rogers, Annette Estes, Paul Yoder
      First page: 244
      Abstract: Autism, Ahead of Print.
      This study examined an insufficiently studied predictor of functional language, social motivation, in a group of 87 young children with autism spectrum disorder. Participants (age 14–31 months at the start of the study) were assessed at four times over 24 months. We tested total and indirect associations between early social motivation and later expressive language to understand the behavioral mechanisms by which social motivation might affect functional language development. Results from this study show that early social motivation predicts functional language 2 years later in young children with autism spectrum disorder. In addition, this positive longitudinal association is serially mediated by intentional communication and then receptive language. These findings are consistent with the elicited bootstrapping hypothesis which proposes that children with relatively stronger social motivation produce more intentional communication. This, in turn, elicits others’ linguistic input which impels receptive language development. This process eventually results in relatively increased expressive language development.Lay abstractAbout one-third of children with autism spectrum disorder never develop the language that they need in different day-to-day situations. Identifying potential factors that can predict later language development is crucial to understanding why some children with autism spectrum disorder successfully develop language while others do not. This study sought to investigate one of the understudied predictors of language development, social motivation, and to test theories for why this association may occur. Testing the theories requires that we measure children’s ability to deliberately and directly communicate with others (i.e. intentional communication) and children’s language understanding between the measures of social motivation and later expressive language. We tested 87 children with autism spectrum disorder, aged 14–31 months, at four times over 24 months. We found that children with relatively stronger social motivation had relatively better language use 2 years later. This positive link was partly due to a child’s ability to produce intentional communication and to understand language. Although we did not measure parents’ talking to their children, a theory that inspired this study suggests that children who use frequent intentional communication probably motivate others to talk with them frequently, which facilitates children’s language understanding which leads to the development of expressive language. This theory, if confirmed to be true, can provide guidance for parents who want to help their children learn to talk. Parents could look for intentional communication from their children and respond by talking to their children. Effective intervention on both parent and child targets will likely enhance treatment efficacy. Future work is needed to test these ideas.
      Citation: Autism
      PubDate: 2020-09-12T07:37:16Z
      DOI: 10.1177/1362361320953260
       
  • Specialized primary care medical home: A positive impact on continuity of
           care among autistic adults
    • Authors: Brittany N Hand, Daniel L Coury, Susan White, Amy R Darragh, Susan Moffatt-Bruce, Lauren Harris, Anne Longo, Jennifer H Garvin
      First page: 258
      Abstract: Autism, Ahead of Print.
      While the medical home has proven effective at improving continuity of care among other populations, there is a paucity of literature testing the effectiveness of medical homes in serving the healthcare needs of autistic adults. We conducted a retrospective cohort study to compare the continuity of care of autistic adult patients at a specialized primary care medical home designed to remove barriers to care for autistic adults, called the Center for Autism Services and Transition (CAST), to propensity score matched national samples of autistic adults with private insurance or Medicare. The unadjusted median Bice–Boxerman continuity of care index was 0.6 (interquartile range = 0.4–1.0) for CAST patients, 0.5 (interquartile range = 0.3–1.0) for Medicare beneficiaries, and 0.6 (interquartile range = 0.4–1.0) for privately insured autistic adults. In multivariable models controlling for demographic characteristics, on average, CAST patients had continuity of care indices that were 10% higher than national samples of autistic adult Medicare beneficiaries (p 
      Citation: Autism
      PubDate: 2020-09-10T06:17:14Z
      DOI: 10.1177/1362361320953967
       
  • Health status of Medicare-enrolled autistic older adults with and without
           co-occurring intellectual disability: An analysis of inpatient and
           institutional outpatient medical claims
    • Authors: Daniel Gilmore, Lauren Harris, Anne Longo, Brittany N Hand
      First page: 266
      Abstract: Autism, Ahead of Print.
      Little is known about the extent to which the healthcare needs of autistic older adults with intellectual disability differ from autistic older adults without intellectual disability. We conducted a cross-sectional retrospective cohort study of Medicare claims data from 2016 to 2017 to compare the prevalence of physical and mental health conditions among autistic older adults (age 65+ years) with intellectual disability (N = 2054) to autistic older adults without intellectual disability (N = 2631). Medicare claims data consisted of records from inpatient hospitalizations and institutional outpatient visits (i.e. visits to hospital outpatient departments, rural health clinics, renal dialysis facilities, outpatient rehabilitation facilities, Federally Qualified Health Centers, and community mental health centers). Examination of the largest between-group differences revealed that autistic older adults with intellectual disability had 350% greater odds of epilepsy (odds ratio = 4.5, 95% confidence interval = 3.9–5.2), 170% greater odds of osteoporosis (odds ratio = 2.7, 95% confidence interval = 2.3–3.2), and 100% greater odds of gastrointestinal conditions (odds ratio = 2.0, 95% confidence interval = 1.8–2.2) but 80% lower odds of attention deficit disorders (odds ratio = 0.2, 95% confidence interval = 0.1–0.3), 70% lower odds of substance use disorders (odds ratio = 0.3, 95% confidence interval = 0.2–0.4), and 60% lower odds of suicidal ideation or intentional self-injury (odds ratio = 0.4, 95% confidence interval = 0.3–0.6). These findings highlight the importance of developing tailored health management strategies for the autistic older adult population as a function of intellectual disability status.Lay abstractLittle is known about the extent to which the healthcare needs of autistic older adults with intellectual disability differ from autistic older adults without intellectual disability. Our study is the first, to our knowledge, to use US national data to compare physical and mental health conditions among autistic older adults with and without intellectual disability. The data analyzed in this study consisted of records from inpatient hospitalizations as well as “institutional outpatient” healthcare visits, which include visits to hospital outpatient departments, rural health clinics, renal dialysis facilities, outpatient rehabilitation facilities, Federally Qualified Health Centers, and community mental health centers. Autistic older adults with intellectual disability were significantly more likely to have thyroid disorders, epilepsy, respiratory infections, gastrointestinal conditions, osteoporosis, cognitive disorders, and schizophrenia/psychotic disorders. In contrast, autistic older adults without intellectual disability were significantly more likely to have obesity, diabetes, high blood pressure, cerebrovascular disease, chronic obstructive pulmonary disease, arthritis, back conditions, attention deficit disorders, substance use disorders, and suicidal ideation or intentional self-injury. These findings highlight the importance of developing distinct, tailored health management strategies for the autistic older adults with and without intellectual disability.
      Citation: Autism
      PubDate: 2020-09-10T06:17:54Z
      DOI: 10.1177/1362361320955109
       
  • ‘I just rolled up my sleeves’: Mothers’ perspectives on raising
           girls on the autism spectrum
    • Authors: Karen Fowler, Cliodhna O’Connor
      First page: 275
      Abstract: Autism, Ahead of Print.
      Little previous research has elucidated the everyday experiences of autistic girls or their families. This study used qualitative in-depth interviews to explore mothers’ experiences of the diagnosis, presentation and impact of caring for a daughter with autism. Nineteen women with autistic daughters (aged between 7 and 18) participated in the research, which took place in Ireland. Thematic analysis identified six themes: What’s Going On'; Road to Acceptance; Beyond the Stigma of Autism; Autism: Like a Girl; Mothers Holding It All Together; and Mothers Roll Up Their Sleeves. The analysis suggests that the path of autism in girls in Ireland is marked by diagnostic delays, social stigma, interpersonal difficulties, mental health comorbidities and parental stress. However, these challenges were offset by the resilience of mothers, buttressed by pride in their daughters and support from other women. Results will inform the development of policy and practice that is sensitive to the lived realities of autistic girls and their families.Lay abstractAutism in boys has been well researched but very little is known about the everyday experiences of autistic girls or their families. Mothers’ views and insights can be very helpful in increasing knowledge around the unique demands of raising a daughter with autism. This study conducted interviews with Irish mothers to examine their own experiences regarding (a) getting an autism diagnosis for their daughter, (b) their daughters’ personal characteristics and (c) the impact of caring for a daughter with autism. The study suggests that the route to an autism diagnosis for girls in Ireland is made more difficult by delays and missed diagnoses, and often followed by inadequate supports. Mothers described autistic girls as presenting with social challenges and mental health difficulties. Many mothers experienced judgement from other parents and family members, acute stress and mental health struggles. However, these challenges were offset by mothers’ resilience, pride in their daughters and support from other women. The findings of this study highlight the importance of specific support for autistic girls and their families.
      Citation: Autism
      PubDate: 2020-09-15T09:52:54Z
      DOI: 10.1177/1362361320956876
       
  • Improving autism and developmental screening and referral in US primary
           care practices serving Latinos
    • Authors: Katharine E Zuckerman, Alison E Chavez, Laura Wilson, Katie Unger, Colleen Reuland, Katrina Ramsey, Margaret King, Julie Scholz, Eric Fombonne
      First page: 288
      Abstract: Autism, Ahead of Print.
      Improving autism spectrum disorder screening and referral in primary care may reduce autism spectrum disorder disparities for Latino children. The REAL-START intervention aimed to increase primary care provider adherence to autism spectrum disorder and developmental screening guidelines, and to increase Early Intervention referral for children at developmental risk in primary care clinics serving Latinos. This quasi-experimental study enrolled six Oregon primary care clinics. Clinic staff attended one initial and three follow-up trainings. Trainings addressed screening, billing, referral, and follow-up issues specific to Latinos. Clinic leaders met with a quality improvement facilitator to review performance. Medical record review measured screening and referral at 18- and 24-month well-child visits at baseline and 3, 6, 9, and 12 months. State Early Intervention database queries assessed Early Intervention eligibility. Overall, 2224 well-child visits were assessed (39% Latino). Clinics improved rates of autism spectrum disorder screening from 70% to 94% and general developmental screening from 62% to 95%. Adherence to screening guidelines increased from 46% to 91%. Proportion of children referred to Early Intervention for unchanged, but total referrals increased and age range of referred children broadened. Time to Early Intervention evaluation was slightly shorter among screening-age children. REAL-START may improve screening and referral for autism spectrum disorder and developmental delay in Latino communities.Lay abstractLatino children experience delays in access to diagnosis and treatment of autism spectrum disorder. Primary care–based screening of all children for autism spectrum disorder and referring them for services may reduce racial/ethnic differences and improve care. REAL-START, a yearlong screening intervention, was effective in increasing screening for autism spectrum disorder and general developmental delays, increasing therapy referrals, and shortening time for developmental assessment in primary care clinics with Latino patients.
      Citation: Autism
      PubDate: 2020-09-14T07:45:02Z
      DOI: 10.1177/1362361320957461
       
  • Mortality in 787,666 school pupils with and without autism: A cohort study
    • Authors: Gillian S Smith, Michael Fleming, Deborah Kinnear, Angela Henderson, Jill P Pell, Craig Melville, Sally-Ann Cooper
      First page: 300
      Abstract: Autism, Ahead of Print.
      Studies on children and adults combined suggest higher mortality rates for autistic than other people, but few report mortality rates for autistic children. In addition, past studies may not be representative of the current generation of children diagnosed with autism. We examined mortality in children using data from Scotland’s annual pupil census, linked to National Records of Scotland deaths register, between 2008 and 2015. In total, 9754 (1.2%) of 787,666 pupils had autism. They were more likely to live in neighbourhoods of greater deprivation and receive free school meals. Six autistic pupils died; crude mortality rate 15.8/100,000 person-years (95% CI = 7.1–35.1), compared with 458 other pupils; crude mortality rate 12.5/100,000 person-years (95% CI = 11.4–13.7). The indirectly standardised mortality ratio was 1.1 (95% CI = 0.5–2.5). In the autistic pupils, the most common causes of death were nervous system diseases, for example, epilepsy. Avoidable causes were common. In the comparison group, external causes and cancers were the most common causes of death. We cautiously conclude that mortality in the current generation of autistic children is no higher than for other children, perhaps due to recent widening of criteria for autism spectrum diagnosis, but some deaths could have been avoided by better care.Lay abstractThere are few studies on the deaths of children and young people with autism; some studies on children and adults combined suggest that those with autism may have higher death rates than other people. More children are diagnosed with autism than in the past, suggesting that there are now more children with milder autism who have the diagnosis than in the past, so studies in the past might not apply to the current generation of children and young people diagnosed with autism. We examined the rates of death in children and young people in Scotland using recorded information in Scotland’s annual pupil census, linked to the National Records of Scotland deaths register, between 2008 and 2015. In total, 9754 (1.2%) out of 787,666 pupils had autism. Six pupils with autism died in the study period, compared with 458 other pupils. This was equivalent to 16 per 100,000 for pupils with autism and 13 per 100,000 pupils without autism; hence, the rate of death was very similar. In the pupils with autism, the most common causes of death were diseases of the nervous system, whereas they were from external causes in the comparison pupils. The autism group had some deaths due to epilepsy which might have been prevented by good quality care. We cautiously conclude that the death rate in the current generation of children and young adults with autism is no higher than for other children, but that even in this high-income country, some deaths could be prevented by high quality care.
      Citation: Autism
      PubDate: 2020-08-24T08:31:49Z
      DOI: 10.1177/1362361320944037
       
 
JournalTOCs
School of Mathematical and Computer Sciences
Heriot-Watt University
Edinburgh, EH14 4AS, UK
Email: journaltocs@hw.ac.uk
Tel: +00 44 (0)131 4513762
 


Your IP address: 3.232.133.141
 
Home (Search)
API
About JournalTOCs
News (blog, publications)
JournalTOCs on Twitter   JournalTOCs on Facebook

JournalTOCs © 2009-