JournalTOCs

Autism
Journal Prestige (SJR): 1.739

Citation Impact (citeScore): 4
Number of Followers: 207

Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1362-3613 - ISSN (Online) 1461-7005
Published by Sage Publications

[1176 journals]

Distinct patterns of GABAergic interneuron pathology in autism are
associated with intellectual impairment and stereotypic behaviors
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  Authors: Brett D Dufour, Erin McBride, Trevor Bartley, Pablo Juarez, Verónica Martínez-Cerdeño
  Abstract: Autism, Ahead of Print.
  Autism spectrum disorder is a neurodevelopmental condition characterized by deficits in social communication and repetitive behaviors. How specific anatomical alterations contribute to the clinical profile of autism spectrum disorder remains largely uncharacterized. We have previously shown that parvalbumin-positive Chandelier cells, a specific type of GABAergic interneuron, are reduced in number in the autism spectrum disorder prefrontal cortex. Here, we assessed the relationship between interneuron pathology with autism spectrum disorder symptom severity and comorbidity. We collected clinical records from autism (n = 20) and control (n = 19) brain donors, from whom we previously characterized GABAergic interneuron pathology in three regions of the prefrontal cortex (BA9, 46, and 47). We assessed the relationship between the severity of core symptoms, as indicated by Autism Diagnostic Interview—Revised scores, and Chandelier cell pathology in autism spectrum disorder, and also differences in interneuron pathology associated with autism spectrum disorder comorbidities. Total GABAergic interneuron number was significantly reduced in autism spectrum disorder cases with intellectual disability in the prefrontal cortex (PFC )—by 36.6% relative to autism spectrum disorder without intellectual disability and by 38.7% relative to neurotypical controls. The severity of autism spectrum disorder motor stereotypies was correlated with the severity of Chandelier cell loss in BA47, as indicated by reductions in parvalbumin+ interneurons and GABA transporter 1+ cartridges. Chandelier cell loss is associated with the core autism spectrum disorder symptom domain of restricted repetitive behaviors and likely plays a role in stereotypic motor mannerisms. Intellectual impairment in autism spectrum disorder reflects a more severe form of a common underlying neuropathology-cortical GABAergic interneuron loss.Lay AbstractAutism spectrum disorder is a neurodevelopmental condition characterized by deficits in sociability and communication and the presence of repetitive behaviors. How specific pathological alterations of the brain contribute to the clinical profile of autism spectrum disorder remains unknown. We previously found that a specific type of inhibitory interneuron is reduced in number in the autism spectrum disorder prefrontal cortex. Here, we assessed the relationship between interneuron reduction and autism spectrum disorder symptom severity. We collected clinical records from autism spectrum disorder (n = 20) and assessed the relationship between the severity of symptoms and interneuron number. We found that the reduced number of inhibitory interneurons that we previously reported is linked to specific symptoms of autism spectrum disorder, particularly stereotypic movements and intellectual impairments.
  Citation: Autism
  PubDate: 2023-03-20T06:43:24Z
  DOI: 10.1177/13623613231154053
Prevalence and severity of COVID-19 among children and adolescents with
autism spectrum disorders in the Republic of Korea
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  Authors: Jieun Yun, Beomjun Kang, Jae-ryun Lee, Hyejin Lee, Jin Yong Lee
  Abstract: Autism, Ahead of Print.
  Autism spectrum disorder is considered a vulnerability for many diseases including coronavirus disease 2019. This study investigated trends in coronavirus disease 2019 among children and adolescents with and without autism spectrum disorder and to evaluate whether there are differences in the prevalence, severity, and case fatality rate. We used data from the National Health Insurance Service for all people ⩽19 years of age. Among 9,187,211 children and adolescents ⩽19 years of age, 402,499 (4.4%) were coronavirus disease 2019–positive. Of the total population, 63,054 (0.7%) were diagnosed with autism spectrum disorder, among whom 2557 (4.1%) were coronavirus disease 2019–positive. The coronavirus disease 2019 prevalence was lower among children and adolescents with autism spectrum disorder, with 4055 per 100,000 versus 4383 per 100,000 without autism spectrum disorder (p
  Citation: Autism
  PubDate: 2023-03-20T06:41:41Z
  DOI: 10.1177/13623613231160631
Factors of relationship satisfaction for autistic and non-autistic
partners in long-term relationships
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  Authors: Rui Ying Yew, Merrilyn Hooley, Mark A Stokes
  Abstract: Autism, Ahead of Print.
  Autistic individuals have reported lower satisfaction in their romantic relationships compared to non-autistic individuals. Previous research on the factors that contribute to relationship satisfaction within autism has focused on the characteristics of autistic participants as barriers to relationship satisfaction, while overlooking the role of their partners. This study investigated a range of factors and their association with long-term relationship satisfaction for 95 autistic individuals and 65 non-autistic individuals in current or previous long-term relationships with autistic individuals. Participants completed an online survey, including questionnaires measuring autistic traits, the Big Five personality traits, social loneliness, partner responsiveness, sexual satisfaction and relationship satisfaction. Partner responsiveness significantly predicted relationship satisfaction for both autistic and non-autistic partners. The findings suggest that to enhance relationship satisfaction, service providers working with couples involving an autistic individual would improve the relationship by focusing on assisting their clients to identify each other’s needs and how best to meet them.Lay abstractPrevious research has found that autistic people report lower satisfaction in their romantic relationships compared to non-autistic people. However, the majority of this research has focused on autistic traits as barriers to relationship satisfaction, while overlooking the role of their partners in these relationships. Our study explored a range of factors in both autistic people and non-autistic partners of autistic people and how they may be linked to long-term relationship satisfaction. These factors included social and communication skills, personality traits, social loneliness, partner responsiveness, and sexual satisfaction. We found that partner responsiveness was a strong predictor of relationship satisfaction for both autistic and non-autistic partners, suggesting that rather than focusing intervention solely on the autistic person, the role of their partner should also be considered. Service providers who work with couples involving an autistic person to enhance their relationship satisfaction could focus on assisting their clients to identify each other’s needs and how best to meet them.
  Citation: Autism
  PubDate: 2023-03-16T10:10:06Z
  DOI: 10.1177/13623613231160244
Factors influencing the mental health of autistic children and teenagers:
Parents’ observations and experiences
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  Authors: Suzanne Mukherjee, Bryony Beresford
  Abstract: Autism, Ahead of Print.
  The high prevalence of mental health and behaviour problems among autistic children and adults is an issue of concern to the autism community. Many studies have been undertaken to identify the factors that protect against/or increase the risk of such difficulties. However, this research is dominated by quantitative observational studies. In this study, we sought to investigate the same issue using a qualitative research approach, positioning parents as experts and eliciting their theories as to what influenced their child’s mental health from diagnosis to the late teenage years. In-depth interviews were undertaken with 33 parents (30 mothers, 3 fathers) of 31 autistic teenagers (21 males, 10 females) aged between 15 and 19 years (median 17 years) purposively sampled from an existing cohort (QUEST). Parents believed a wide range of child-centred, developmental and socio-environmental factors had played a role in their child’s mental health, alongside life events involving loss and separation. A number of these factors have received little or no research attention to date (e.g. aspects of the school environment). The findings have important implications, highlighting factors that should be given priority in future research, as well as interventions needed to support the mental health of autistic teenagers.Lay abstractAutistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents’ expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers’ mental health from diagnosis in early childhood through to the present, and to explain the ‘theories’ they developed about what affected their child’s mental health – positively and negatively – and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child’s difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved.
  Citation: Autism
  PubDate: 2023-03-16T04:41:09Z
  DOI: 10.1177/13623613231158959
The earlier the better: An RCT of treatment timing effects for toddlers on
the autism spectrum
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  Authors: Whitney Guthrie, Amy M Wetherby, Juliann Woods, Christopher Schatschneider, Renee D Holland, Lindee Morgan, Catherine E Lord
  Abstract: Autism, Ahead of Print.
  Robust evidence supports the efficacy of early autism intervention. Despite broad consensus that earlier intervention leads to better outcomes, evidence for this has been limited to correlational studies. This study examined timing effects of the Early Social Interaction (ESI) model, a parent-implemented intervention, using a complete crossover randomized controlled trial (RCT). Effects of Individual-ESI were compared when initiated at 18 or 27 months of age, and also contrasted with effects of the less intensive Group-ESI as an active control condition. Participants included 82 autistic toddlers who received 9 months of Individual-ESI and 9 months of Group-ESI, with the timing/order randomized. Blinded clinicians completed assessments at baseline (18 months of age), end of Condition 1 (27 months), and end of Condition 2 (36 months). Toddlers randomized to Individual-ESI at 18 months showed greater gains during treatment than those starting Individual-ESI at 27 months in receptive/expressive language, social communication, and daily living skills. This pattern was not observed for Group-ESI, demonstrating that timing effects were specific to Individual-ESI and ruling out maturation effects. This RCT demonstrated that earlier intensive, individualized intervention led to greater improvements, and suggests that even a narrow window of 18 versus 27 months may impact child outcomes.Lay abstractBehavioral interventions that incorporate naturalistic, developmental strategies have been shown to improve outcomes for young children who receive an autism spectrum disorder (ASD) diagnosis. Although there is broad consensus that children on the spectrum should begin supports as soon as possible, the empirical evidence for this is relatively limited and little is known about the optimal age to start autism-specific interventions. Our team conducted a randomized controlled trial (RCT) to test the effects of starting intervention at different ages, using the Early Social Interaction (ESI) model, a parent-implemented intervention for toddlers on the spectrum. Participants included 82 autistic toddlers and their caregiver(s) who received 9 months of Individual-ESI and 9 months of Group-ESI, with the timing/order of these two treatment conditions randomized. Thus, families received the more intensive and individualized Individual-ESI at either 18 or 27 months of age. Results revealed that children who received Individual-ESI earlier showed greater treatment gains than those who received this intervention later. Gains were demonstrated in several areas, which included the use and understanding of language, social use of communication skills, and self-help skills. Importantly, these findings were specific to the intensive and individualized parent coaching model compared to group-based treatment, allowing us to rule out the possibility that these timing effects were due to children getting older rather than the treatment itself. Our results suggest that even a narrow window of 18 versus 27 months may have an impact on outcomes and underscore the importance of screening and evaluation as young as possible.
  Citation: Autism
  PubDate: 2023-03-16T04:38:59Z
  DOI: 10.1177/13623613231159153
Direct and indirect costs for families of children with autism spectrum
disorder in China
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  Authors: Yanan Zhao, Yanan Luo, Rong Zhang, Xiaoying Zheng
  Abstract: Autism, Ahead of Print.
  Autism spectrum disorder has gained international attention due to its prevalence and the extent to which it can affect families. As a disorder without quantifiable treatment effects, it is easily overlooked in the battle for resources. Estimating family economic burdens and the specific factors that may be associated with them could help in the identification of resources and the promotion of social justice. We examined the family costs from a national family survey with Children with autism spectrum disorder aged 2–6 years (N = 3236). A three-tiered model to quantify the costs was used. The families’ average annual direct cost per child was $24,869.0, including direct medical cost (inpatient, outpatient,drugs, etc.) of $6009.2 and direct nonmedical cost (rehabilitation or educational, rental, transportation, care, and others) of $18,859.8. The annual indirect costs (productivity loss from resignation and job adjustment) for families were $13,990.7. The total costs were $34,206.5. The results of the regression revealed that the mothers’ educational level was significantly associated with costs. Families with an interprovincial immigration background, a higher-than-average income, or children with more severe autism spectrum disorder had a greater possibility of higher direct, indirect, and overall costs. Autism spectrum disorder imposed a significant financial burden on the families of children with autism spectrum disorder.Lay abstractThis is the first comprehensive national study to explore the direct and indirect costs for families of children with autism spectrum disorder in China. The increasing prevalence of autism spectrum disorder highlights a growing need for resources to provide care for families of children with autism spectrum disorder. The medical and nonmedical costs and parents’ productivity loss have caused a serious burden on their families. Our objective is to estimate the direct and indirect costs for the families of children with autism spectrum disorder in China. The target population was parents of children with autism spectrum disorder. We analyzed the costs using cross-sectional data from a Chinese national family survey with children aged 2–6 years (N = 3236) who were clinically diagnosed with autism spectrum disorder. Family data from 30 provinces in China were obtained. Cost items included direct medical costs, direct nonmedical costs, and indirect costs. In this study, we found that the largest part of family costs for autism spectrum disorder are nonmedical costs and productivity loss. Autism spectrum disorder has imposed a huge economic burden on parents having children with autism spectrum disorder in China, who need more support than the current health care system provides.
  Citation: Autism
  PubDate: 2023-03-07T10:34:56Z
  DOI: 10.1177/13623613231158862
Innovation through neurodiversity: Diversity is beneficial
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  Authors: Harriet Axbey, Nadin Beckmann, Sue Fletcher-Watson, Alisdair Tullo, Catherine J Crompton
  Abstract: Autism, Ahead of Print.
  Those experiencing high rapport or strong social connection are more likely to copy each other, or emulate each other’s ideas, either consciously or sub-consciously. In this study, we use this phenomenon to examine whether neurotype match or mismatch impacts degree of imitation in a creative task. We asked 71 participants in neurodiverse pairs (including both autistic and non-autistic participants) and single-neurotype pairs (both autistic or both non-autistic), where one participant builds and one observes, to build the tallest possible tower from dried spaghetti and plasticine. We measured the height of each tower and photographed them to create a stimulus set. We then asked independent raters (n = 351, 62 autistic) to rate towers for degree of similarity. We hypothesised that lower similarity scores would be generated for towers created by people in neurodiverse pairs, showing positive innovation. Results showed towers built in the neurodiverse condition had least similarity, whereas towers built in the autistic and non-autistic conditions were significantly more similar. There was no difference in performance (height of tower) based on condition. Our results are the first to examine creativity within single-neurotype and neurodiverse pairs; they indicate that neurological diversity may be beneficial within a group setting. Subsequent research is required to examine how this interacts with divergent communication styles.Lay abstractNeurodivergences such as autism have been previously viewed from a negative, ‘deficit’, perspective. However, research is beginning to show the benefits of being autistic, and the positive outcomes of neurodiverse interactions. Diversity in the way we think can lead to diversity in the outcomes we produce. In this study, we asked independent raters to compare the similarity of towers built by autistic and non-autistic individuals in single-neurotype (both people were autistic or both people were non-autistic) and neurodiverse (one autistic person and one non-autistic person) pairs, to see whether people would be more or less likely to copy someone who shared their diagnostic status. Our results showed there was the least similarity in design in the neurodiverse pairs; people were less likely to copy the design of the previous builder if that person had a different autistic status to themselves. This could imply people felt more confident in copying someone with a similar neurotype, mirroring results from rapport studies where autistic individuals reported greater rapport with other autistic participants than with non-autistic participants. This also shows there was more evidence of creativity in designs, and innovation from stimulus design (the tower they had watched being built) when the pairs had different autistic diagnoses. This could inform practice and support involving autistic people, encouraging education and care providers to create more diverse methods and designs for support mechanisms, content delivery, and research data collection.
  Citation: Autism
  PubDate: 2023-03-07T10:32:46Z
  DOI: 10.1177/13623613231158685
‘I felt like my senses were under attack’: An interpretative
phenomenological analysis of experiences of hypersensitivity in autistic
individuals
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  Authors: Liesbeth Taels, Jasper Feyaerts, Marie Lizon, Melissa De Smet, Stijn Vanheule
  Abstract: Autism, Ahead of Print.
  While atypical sensory processes have become central to scientific explanatory models of autism, such models usually do not explicitly address first-person experiences of sensory processes by autistic individuals. Detailed phenomenological research of this subjective domain is nonetheless essential to ground explanatory accounts in the actual experiences and challenges faced by autistic individuals. Therefore, our study consisted of an interpretative phenomenological analysis of 18 semi-structured interviews with autistic individuals about their experiences of hypersensitivity. Overall, our analysis showed how hypersensitivity pertained to disturbances at a basic level of bodily self-experience and also affected other crucial phenomenological experiential dimensions such as the subjective perception of time and space, sense-making processes, intersubjectivity, and moods. Hypersensitivities were described by participants as intrusive experiences of being vulnerably exposed to overwhelming stimuli that invaded their bodies and were simultaneously related to an invasive, chaotic, unpredictable or threatening perception of the (social) environment. Our study highlights the impact of hypersensitivities on experiential domains outside the strict sensory register, thereby providing further evidence for altered sensory processing as a potential core mechanism involved in a variety of autistic symptoms. Our study also indicates the clinical importance of therapeutic interventions that act on a fragile sense of embodiment in autism.Lay abstractResearch shows that the way autistic individuals perceive and process sensory stimuli differs from those of non-autistic people. However, while current research often focuses on what sensory differences in autism are and which neurocognitive processes may explain these, it often does not explicitly address what it is like to experience the world through the senses of an autistic person. To explore this understudied dimension, we conducted 18 in-depth interviews with autistic individuals in order to better understand how they personally experienced hypersensitivity from a first-person perspective. Participants described hypersensitivity as a feeling of being bombarded by intrusive stimuli that seemed to invade their bodies and from which they had difficulties distancing themselves. They also indicated how due to hypersensitivity they often perceived their (social) environment as invasive, chaotic, unpredictable or threatening. Hypersensitivities were thus not only described as unsettling bodily experiences but also related to challenges in perceiving, understanding and interacting with the (social) world. By focussing on the subjective dimension of sensory processing in autism, our study thus highlights how sensory difficulties are not peripheral features of autism but play an essential part in the daily challenges faced by autistic individuals.
  Citation: Autism
  PubDate: 2023-03-06T08:59:45Z
  DOI: 10.1177/13623613231158182
Variable patterns of daily activity participation across settings in
autistic youth: A latent profile transition analysis
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  Authors: Yun-Ju Chen, Eric Duku, Anat Zaidman-Zait, Peter Szatmari, Isabel M Smith, Wendy J Ungar, Lonnie Zwaigenbaum, Tracy Vaillancourt, Connor Kerns, Teresa Bennett, Mayada Elsabbagh, Ann Thompson, Stelios Georgiades
  Abstract: Autism, Ahead of Print.
  Participation in daily activities is often linked to functional independence and well-being, yet individual variability in participation and factors associated with that variation have rarely been examined among autistic youth. We applied latent profile analysis to identify subgroups of youth based on parent-reported activity participation frequency at home, school and community, as well as associations with youth characteristics, family demographics and environmental supportiveness among 158 autistic youth (aged 11–14 years at baseline). Three-, three- and two-profile solutions were selected for home, school and community settings, respectively; the most prevalent profiles were characterized by frequent home participation (73%), low participation in non-classroom activities at school (65%) and low community participation, particularly in social gatherings (80%), indicating participation imbalance across settings. More active participation profiles were generally associated with greater environmental support, higher cognitive and adaptive functioning and less externalizing behaviour. Latent transition analysis revealed overall 75% stability in profile membership over approximately 1 year, with a different home participation profile emerging at the second time-point. Our findings highlighted the variable participation patterns among autistic youth as associated with individual, family and environmental factors, thus stressing the need for optimizing person–environment fit through tailored supports to promote autistic youth’s participation across settings.Lay abstractWhat people do or engage in in their daily lives, or daily life participation, is often linked to their state of being happy and healthy, as well as potential for living independently. To date, little research has been conducted on daily activity participation by autistic youth at home, at school or in the community. Learning more about individual differences in participation levels and what might influence them can help to create custom supports for autistic youth and their families. In this study, 158 caregivers of autistic youth were asked how often their children took part in 25 common activities at two assessments, about one year apart. The analysis showed three profiles for each of the home and school settings and two profiles for the community setting. These profiles reflected distinct patterns in how often autistic youth took part in various daily activities, particularly in doing homework, school club activities and community gatherings. Most autistic youth were in profiles marked by often taking part at home but less often at school and in the community, and about three-fourths of them tended to stay in the same profile over time. Autistic youth with limited participation profiles were more likely to have lower scores on measures of cognitive ability and daily life skills and more challenging behaviour, and faced more barriers in their environment. These findings show how important it is to think about each autistic person’s strengths and weaknesses, and changing needs, to better support their daily life participation.
  Citation: Autism
  PubDate: 2023-03-01T04:57:23Z
  DOI: 10.1177/13623613231154729
Brief report: Evaluation of an adapted youth version of Parents Taking
Action for parents of pre/adolescents with autism spectrum disorder in
Colombia
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  Authors: Mariana Garcia Torres, Sandy Magaña, Fabricio Balcazar
  Abstract: Autism, Ahead of Print.
  The aim of this study was to evaluate the efficacy of the youth version of the program Parents Taking Action in Bogota, Colombia, using a quasi-experimental design. We hypothesized that parents in the treatment groups would improve in levels of knowledge, empowerment, self-efficacy, and use of strategies related to topics of adolescence and sexuality compared to the control group. We recruited 25 Colombian parents of pre/adolescent youth with autism spectrum disorder between the ages of 10 and 17 in Bogota. The intervention included four weekly sessions in which the new content about sexuality and adolescence was delivered. Twelve parents were in the intervention group and 13 were in the control group. Intervention participants significantly improved in Knowledge (t = 4.37 p
  Citation: Autism
  PubDate: 2023-02-27T12:49:38Z
  DOI: 10.1177/13623613231155773
Factors associated with mental health symptoms among UK autistic children
and young people and their parents during the COVID-19 pandemic
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  Authors: Melanie Palmer, Susie Chandler, Virginia Carter Leno, Farah Mgaieth, Isabel Yorke, Matthew Hollocks, Andrew Pickles, Vicky Slonims, Stephen Scott, Tony Charman, Emily Simonoff
  Abstract: Autism, Ahead of Print.
  The current study explored the role of pre-existing and pandemic-time child, family or environmental factors in the presentation of mental health symptoms of autistic youth and their parents during the pandemic. Participants were parents/carers of autistic children (Autism Spectrum Treatment and Resilience Cohort, N = 67, Mage = 9 years) and adolescents (QUEST cohort, N = 112, Mage = 17 years). Parents completed an online survey that asked about child and parental mental health, infection experience, and changes to education arrangements, family life, housing and finances during the pandemic. Pre-existing measures of mental health, autism and adaptive functioning were also utilised. More engagement and enjoyment in education provision and going outside was associated with better child and parental mental health. In multivariate multiple linear regression models, more pre-existing attention deficit hyperactivity disorder symptoms were associated with more behavioural/attention deficit hyperactivity disorder symptoms during the pandemic in the pre-adolescent cohort, and with greater emotional symptoms in the adolescent cohort. More pre-existing parental mental health problems were associated with more parental mental health symptoms during the pandemic in both cohorts. Knowledge of pre-existing mental health and pandemic-related stressors may help care planning. Encouraging engagement and enjoyment in education and promoting physical exercise are key intervention targets. Ensuring access to attention deficit hyperactivity disorder medication and support is important, especially if this is managed jointly across school and home.Lay abstractWhat is already known about the topic: The COVID-19 pandemic and the associated restrictions impacted all of society. There is emerging evidence showing a range of impacts on autistic children and young people and their families. Further research that looks at how individuals coped during the pandemic while considering how they were doing before the pandemic is needed.What this paper adds: This article explores whether how well autistic youth were doing before the pandemic influenced how they coped during the pandemic. It also looked at how well their parents were doing during the pandemic and whether any pre-pandemic factors influenced how they coped. Samples of both primary-school-aged autistic children and autistic teenagers and their parents were surveyed to answer these questions. More engagement and enjoyment in education provision during the pandemic and getting outside more were linked with better child and parental mental health during the pandemic. More attention deficit hyperactivity disorder before the pandemic was linked with more attention deficit hyperactivity disorder and behavioural problems during the pandemic in primary-school-aged autistic children, and more emotional problems during the pandemic in autistic teenagers. Parents with more mental health problems during the pandemic had more mental health problems before the pandemic.Implications for practice, research or policy: Encouraging engagement and enjoyment in education and promoting physical exercise are key intervention targets. Ensuring access to attention deficit hyperactivity disorder medication and support is important, especially if this is managed jointly across school and home.
  Citation: Autism
  PubDate: 2023-02-27T12:42:51Z
  DOI: 10.1177/13623613231153694
Short report: The role of oral hypersensitivity in feeding behaviors of
young autistic children
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  Authors: Kelsey Thompson, Anna Wallisch, Sallie Nowell, Jessica Meredith, Brian Boyd
  Abstract: Autism, Ahead of Print.
  Feeding problems are common among autistic children and are linked to negative health consequences. Therefore, understanding feeding problems and factors that influence these behaviors is important for developing supports for children and families. While certain sensory processing patterns are commonly associated with feeding problems, less is known about the link between sensory processing and feeding behaviors in autism, as well as how parent behaviors and feelings during mealtime differ based on child sensory preferences. This research examined two groups of young autistic children who were reported to be picky eaters by their parents: those with and those without oral hypersensitivity. Children with oral hypersensitivity had more difficulty with food acceptance, and their parents reported more negative feelings around feeding their child. However, the two groups of children (oral hypersensitive and not) did not differ in their medical/oral motor symptoms, mealtime behavior, or parent use of strategies at mealtimes. This research supports the need for personalized treatment strategies based on the child’s sensory preferences to support both the child and parent in managing mealtimes.Lay abstractFeeding problems are common among autistic children and are linked to negative health consequences. Therefore, understanding feeding problems and factors that influence these behaviors is important for developing supports for children and families. While certain sensory processing patterns are commonly associated with feeding problems, less is known about the link between sensory processing and feeding behaviors in autism, as well as how parent behaviors and feelings during mealtime differ based on child sensory preferences. This research examined two groups of young autistic children who were reported to be picky eaters by their parents: those with and those without oral hypersensitivity. Children with oral hypersensitivity had more difficulty with food acceptance and their parents reported more negative feelings around feeding their child. However, the two groups of children (oral hypersensitive and not) did not differ in their medical/oral motor symptoms, mealtime behavior, or parent use of strategies at mealtimes. This research supports the need for personalized treatment strategies based on the child’s sensory preferences to support both the child and parent in managing mealtimes.
  Citation: Autism
  PubDate: 2023-02-25T05:59:16Z
  DOI: 10.1177/13623613221135091
Measuring family outcomes for young autistic children receiving
interventions in China: The structure of the Family Outcomes Survey and
predicting variables
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  Authors: Huichao Xie, Nicolette Waschl, Songtian Zeng
  Abstract: Autism, Ahead of Print.
  Given the importance of parent involvement and parent-implemented interventions in achieving maximum child outcomes, practitioners need valid measures to assess and monitor family outcomes in developing and delivering effective and sustainable interventions. This study examined the structure of the Family Outcomes Survey, Form A, using a sample of 467 caregivers of young children diagnosed with or at increased likelihood of autism in China and identified significant predictors of the five family outcomes. Findings supported a five-factor model but a poorer fit was reported when the overall family outcome factor was added to the model. Modeling shared variance between some items under Outcome 4, “having support systems,” and Outcome 5, “accessing the community” was found to significantly improve the model fit. Among the analyzed child and family characteristics, the number of hours that the caregiver spent with the autistic child, caregivers’ employment status, family income, and caregivers’ educational attainment were found to be significantly associated with Family Outcomes Survey, Form A scores. Implications of the findings are discussed.Lay abstractEfforts to measure, document, and monitor family outcomes can be helpful to practitioners in developing and delivering effective and sustainable interventions. Researchers have developed the Family Outcomes Survey, Form A, for measuring the outcomes experienced by families of children in the early intervention/early childhood special education system. Little has been reported on how well the five outcomes on the Family Outcomes Survey, Form A describe the experiences and expectations of families of autistic children in China. We conducted a survey using the Family Outcomes Survey, Form A, Chinese version with 467 caregivers of young autistic children in China. First, the five-outcome structure of the Family Outcomes Survey, Form A seemed to be appropriate for measuring family outcomes of autistic children in China. We also found that the Chinese caregivers of autistic children seemed to give general lower ratings on all five outcomes on the Family Outcomes Survey, Form A as compared to caregivers of children in early intervention/early childhood special education in Western countries like the United States and Australia. Furthermore, caregivers’ ratings on the five Family Outcomes Survey, Form A outcomes seemed to be related to their educational attainment, employment status, family income level, and how much time caregivers spent with their autistic child. This study supported the use of the Family Outcomes Survey, Form A, Chinese version with families of autistic children in China. We also discussed how the coronavirus disease 2019 pandemic could have impacted the family outcomes as reported by the Chinese caregivers.
  Citation: Autism
  PubDate: 2023-02-24T06:33:05Z
  DOI: 10.1177/13623613231152563
A portfolio analysis of autism research funding in Aotearoa New Zealand
2007–2021
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  Authors: Lisa Marie Emerson, Elizabeth Pellicano, Ruth Monk, Melissa Lim, Jessica Heaton, Laurie McLay
  Abstract: Autism, Ahead of Print.
  Previously documented global trends in autism research funding have been skewed towards biology research, which is at odds with the priorities expressed by autistic and autism community members. We aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand, and to explore the views of the autistic and autism communities on this funding distribution. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We categorised the funding for autism research to enable comparison to that previously documented in other countries. We elicited the views of the autistic and autism communities in relation to the funded autism research, through an online survey and a series of focus groups. The largest proportion of money and number of grants was awarded to biological research. Community members expressed dissatisfaction with this pattern of funding, and noted that it does not address the needs and priorities of the autistic community. Community members suggested that the funding pattern indicated a lack of autistic consultation and engagement in research design and funding allocation. The priorities of the autistic and autism communities need to be considered by researchers and funders alike. We discuss how autistic inclusion in research can be supported through decision-making regarding funding and ethics relating to autism research.Lay AbstractWe aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We compared the funding distribution in Aotearoa New Zealand to other countries. We asked people from the autistic community and broader autism community whether they were satisfied with this funding pattern, and whether it aligned with what is important to them and to autistic people. We found that the majority of funding for autism research was awarded to biology research (67%). Members of the autistic and autism communities were dissatisfied with the funding distribution, and expressed a lack of alignment with what is important to them. People from the community indicated that the funding distribution did not address the priorities of autistic people, and that it indicated a lack of engagement with autistic people. Autism research funding needs to reflect the priorities of the autistic and autism communities. Autistic people need to be included in autism research and related funding decisions.
  Citation: Autism
  PubDate: 2023-02-20T06:02:49Z
  DOI: 10.1177/13623613231155954
Representation of autism in fictional media: A systematic review of media
content and its impact on viewer knowledge and understanding of autism
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  Authors: Sandra C Jones, Chloe S Gordon, Simone Mizzi
  Abstract: Autism, Ahead of Print.
  Media depictions of autism have the potential to have either positive or detrimental impacts on the lives of autistic people. This systematic review aimed to examine (1) the accuracy and authenticity of fictional media portrayals of autism (Part A) and (2) the impact of viewing such portrayals on knowledge about autism and attitudes towards autistic people (Part B). Seventeen articles met the inclusion criteria and were included in the review: 14 for Part A and 3 for Part B, comprising five experimental studies. The media reviewed in Part A covered a 30-year period (1988–2017). Several stereotypical and unhelpful portrayals surfaced. Positive portrayals of autism highlighted strengths and reflected nuance. Overall, participants in the fiction conditions in Part B were significantly more likely to attribute positive traits to an autistic person than those in the control conditions, with medium effect sizes ranging from 0.57 to 0.73. There were no improvements in knowledge. Given the small number of studies included in this review, further evidence is needed to understand the conditions under which fictional media may be effective. There is also a need to develop measures that accurately and respectfully measure autistic people’s experiences of community knowledge and attitudes.Lay abstractThe way autism is represented in fictional media can impact people’s views of autistic people. For example, representations may contribute to negative views of autistic people as being unusual or dangerous, or they may challenge stereotypes and instead highlight the strengths of autistic people. This work aimed to review previous research to understand how autistic people have been represented in fictional media (Part A). It also sought to understand whether viewing fictional portrayals of autism has an impact on people’s knowledge of autism and attitudes towards autistic people (Part B). Of 14 studies that were included in Part A, several unhelpful and stereotypical portrayals of autism emerged. Positive portrayals were those that highlighted the strengths of autistic people and reflected nuance. There is a need for greater diversity in representation of autism in fictional media. For example, not all autistic people are white heterosexual males. Across the five studies included in Part B, there were no improvements in people’s knowledge of autism after watching or reading a short segment from a fictional TV series or novel that depicts an autistic person. Although there was a significant improvement in people’s attitudes towards autistic people, these findings do not provide a complete picture given the short length of the media exposure and small number of studies. Future studies should investigate how multiple exposures to the representation of autistic people in both fictional and non-fictional sources can affect people’s understanding of autism. There is also a need to develop more accurate and respectful ways of measuring people’s knowledge of, and attitudes towards, autism.
  Citation: Autism
  PubDate: 2023-02-20T05:59:29Z
  DOI: 10.1177/13623613231155770
“Oh, you couldn’t be autistic”: Examining anti-autistic bias and
self-esteem in the therapeutic alliance
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  Authors: Zoe Darazsdi, Christa S. Bialka
  Abstract: Autism, Ahead of Print.
  Presently, most mental health practitioners in the United States are educated, trained, and employed in a system focused on curing or changing autistic people. As a result, mental health practitioners may exhibit anti-autistic bias—any form of bias that degrades, devalues, or others autistic people or traits—when engaged with autistic clients. Since the collaborative relationship between therapist and client, termed the “therapeutic alliance,” is often viewed as the most influential element of therapeutic effectiveness, our phenomenological study examined 14 autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they perceive it has on their self-esteem. Findings, determined through thematic analysis, reveal implicit, unintentional bias was manifested through clinical assumptions about autism, explicit, overt bias was expressed through feelings of intentional harm, and repair of self-esteem was shown through positive alliances. Based on the findings of this study, we offer recommendations to help mental health practitioners and mental health practitioner training programs better serve autistic clients. This study addresses a significant gap in current research on anti-autistic bias in the mental health field and the overall well-being of autistic individuals.Lay AbstractMany mental health practitioners in the United States are trained to cure or change autistic people. Some of these mental health practitioners may show anti-autistic bias when working with autistic clients. Anti-autistic bias is any kind of bias that degrades, devalues, or others autistic people or autistic traits. Anti-autistic bias is especially problematic when mental health practitioners and clients are engaged in the therapeutic alliance, which is the collaborative relationship between a therapist and client. The therapeutic alliance is one of most important parts of an effective therapeutic relationship. Our interview-based study examined 14 autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they felt it has on their self-esteem. Results from this research showed that some mental health practitioners expressed hidden and unrealized bias when working with autistic clients, such as making assumptions about what it means to be autistic. Results also showed that some mental health practitioners were intentionally biased and openly harmful to their autistic clients. Both forms of bias negatively affected participant self-esteem. Based on the findings of this study, we offer recommendations to help mental health practitioners and mental health practitioner training programs better serve autistic clients. This study addresses a significant gap in current research on anti-autistic bias in the mental health field and the overall well-being of autistic individuals.
  Citation: Autism
  PubDate: 2023-02-20T05:49:09Z
  DOI: 10.1177/13623613231154622
Modality-specific associations between sensory differences and autistic
traits
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  Authors: Peter Bang, Kajsa Igelström
  Abstract: Autism, Ahead of Print.
  Sensory processing differences measured by self- or parent-report co-segregate with quantitative autistic traits and have potential endophenotypic properties. It is not known to what extent this reflects generalized sensory dysfunction versus more specific associations involving individual senses or autistic trait domains. We combined Bayesian variable selection with dominance analysis to obtain a more nuanced understanding of modality-specific associations. We recruited two independent samples of adults to complete the Broad Autism Phenotype Questionnaire and the Glasgow Sensory Questionnaire. For each domain of autistic traits (social interaction, communication, cognitive rigidity), we performed stochastic search variable selection using Glasgow Sensory Questionnaire modality subscales as predictors while controlling for uncertainty in other variables. Dominance analysis was applied to the reduced models to evaluate the relative importance of predictors. Only auditory scores reliably predicted all three autistic traits when other modalities were accounted for. The proprioceptive scale, which included motor and interoceptive deficits, predicted communicative autistic traits more than other trait domains. The tactile scale appeared most specific for social autistic traits. Although the findings must be interpreted in light of the limitations of the questionnaires, the study suggests that auditory differences may be more likely than differences in other senses to be a robust sensory endophenotype relevant to autism.Lay abstractSensory symptoms are a major source of distress for many autistic people, causing anxiety, stress, and avoidance. Sensory problems are thought to be passed on genetically together with other autistic characteristics, such as social preferences. This means that people who report cognitive rigidity and autistic-like social function are more likely to suffer from sensory issues. We do not know what role the individual senses, such as vision, hearing, smell, or touch, play in this relationship, because sensory processing is generally measured with questionnaires that target general, multisensory issues. This study aimed to investigate the individual importance of the different senses (vision, hearing, touch, smell, taste, balance, and proprioception) in the correlation with autistic traits. To ensure the results were replicable, we repeated the experiment in two large groups of adults. The first group contained 40% autistic participants, whereas the second group resembled the general population. We found that problems with auditory processing were more strongly predictive of general autistic characteristics than were problems with the other senses. Problems with touch were specifically related to differences in social interaction, such as avoiding social settings. We also found a specific relationship between proprioceptive differences and autistic-like communication preferences. The sensory questionnaire had limited reliability, so our results may underestimate the contribution of some senses. With that reservation in mind, we conclude that auditory differences are dominant over other modalities in predicting genetically based autistic traits and may therefore be of special interest for further genetic and neurobiological studies.
  Citation: Autism
  PubDate: 2023-02-20T05:42:15Z
  DOI: 10.1177/13623613231154349
Associations between executive function and attention abilities and
language and social communication skills in young autistic children
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  Authors: Jill Howard, Brianna Herold, Samantha Major, Caroline Leahy, Kevin Ramseur, Lauren Franz, Megan Deaver, Saritha Vermeer, Kimberly LH Carpenter, Michael Murias, Wei Angel Huang, Geraldine Dawson
  Abstract: Autism, Ahead of Print.
  Although it has been found that autistic children exhibit delays in executive function abilities and atypical patterns of attention, less is known about the relationship between executive function and attention abilities and social and language skills in early childhood. In this study, 180 autistic children, age 2–8 years, participated in a study examining the relationship between executive function abilities, measured by the Behavior Rating Inventory of Executive Function, and assessments of sustained attention measured via eye-tracking and several language and social communication measures. Results revealed that children with higher caregiver-reported executive function skills, specifically, working memory and planning/organization abilities, demonstrated higher levels of caregiver-reported receptive-expressive social communication abilities measured via the Pervasive Developmental Disorder Behavior Inventory. Higher executive function abilities across all domains were associated with lower levels of social pragmatic problems. Children who were able to sustain their attention for a longer duration demonstrated higher expressive language abilities. These results suggest that executive function and attention skills may play an important role in multiple domains of functioning in autistic children. It will be useful to determine whether therapies that seek to improve executive function skills in autistic individuals also positively influence their social/communication and language abilities.Lay AbstractExecutive functioning describes a set of cognitive processes that affect thinking and behavior. Past research has shown that autistic individuals often have delays in the acquisition of executive function abilities. Our study explored how differences in executive function and attention abilities relate to social abilities and communication/language in 180 young autistic children. Data were gathered via caregiver report (questionnaires/interviews) and an assessment of vocabulary skills. The ability to sustain attention to a dynamic video was measured via eye tracking. We found that children with higher levels of executive function skills demonstrated lower levels of social pragmatic problems, a measure of having difficulties in social contexts. Furthermore, children who were able to sustain their attention longer to the video displayed higher levels of expressive language. Our results emphasize the importance of executive function and attention skills across multiple areas of functioning in autistic children, in particular those that involve language and social communication.
  Citation: Autism
  PubDate: 2023-02-20T05:32:50Z
  DOI: 10.1177/13623613231154310
Scoping review of behavioral coding measures used to evaluate parent
responsiveness of children with autism or elevated risk of autism
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  Authors: Thelma E Uzonyi, Alaina C Grissom, Ranita V Anderson, Helen Lee, Sarah Towner-Wright, Elizabeth R Crais, Linda R Watson, Rebecca J Landa
  Abstract: Autism, Ahead of Print.
  Various aspects of parent responsiveness are associated with child outcomes, such as play, language, and social development. However, behavioral coding methods used to measure parent responsiveness vary widely, making comparison of results across studies difficult. The purpose of this scoping review was to summarize current behavioral coding methods used in measuring parent responsiveness to children with autism or elevated likelihood of autism, synthesize the reported metrics used, and highlight the strengths and weaknesses in the reporting standards of available literature. A total of 101 articles met criteria for the review and were analyzed for metrics in demographics, coding system development and accessibility, characteristics of measured responsiveness, reliability, and validity. Results revealed variations in observational procedures, forms of measurement, and specific aspects of responsiveness measured. Details necessary for study replication or extension often were missing, such as parent demographics, clear definitions of parent responsiveness, and coder training procedures. The scoping review results reflect the wide variety of behavioral coding systems used and the inconsistent reporting in published literature on this topic. A case for a best practice model for behavioral coding metrics and reporting standards within parent responsiveness is presented in the discussion.Lay abstractThe topic of how parents react (e.g., how they talk and act) to their child with autism or elevated likelihood of autism, often called parent responsiveness, has been studied by researchers for over 50 years. Many methods for measuring behaviors around parent responsiveness have been created depending on what researchers were interested in discovering. For example, some include only the behaviors that the parent does/says in reacting to something the child does/says. Other systems look at all behaviors in a period of time between child and parent (e.g., who talked/acted first, how much the child or parent said/did). The purpose of this article was to provide a summary of how and what researchers looked at around parent responsiveness, describe the strengths and barriers of these approaches, and suggest a “best practices” method of looking at parent responsiveness. The model suggested could make it more possible to look across studies to compare study methods and results. The model could be used in the future by researchers, clinicians, and policymakers to provide more effective services to children and their families.
  Citation: Autism
  PubDate: 2023-02-18T06:59:06Z
  DOI: 10.1177/13623613231152641
Urban and rural differences in needs, service use and satisfaction among
caregivers of autistic children in Morocco
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  Authors: MV De Jonge, M Boutjdir, T El Korchi, H Torres, A Karpur, A Shih, A El Idrissi
  Abstract: Autism, Ahead of Print.
  Understanding caregivers’ needs is crucial for service planning and empowering caregivers around the world. Although research on autism from Arab countries is emerging, many countries are still unrepresented. Moreover, within-country disparities are understudied. This study investigated differences in needs, service use, and satisfaction between urban or rural living caregivers of autistic children in Morocco. The “Andersen Behavioral Model of Health Services Use” served as a conceptual framework to investigate factors associated with receiving intervention and service satisfaction. Results from a survey among 131 Moroccan caregivers of autistic children revealed similarities and differences in urban and rural living caregivers’ challenges and needs. Children from urban communities had 12 times higher odds of receiving intervention despite similar age and verbal ability. Significantly, fewer children from rural communities attended school as compared with urban communities. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to reflect regional needs, resources, and practices. Addressing enabling factors such as costs, information barriers, or stigma may help reduce both global and within-country disparities in autism care.Lay AbstractIt is very important to understand the needs of caregivers to be able to empower caregivers and to develop or improve services around the world. Therefore, research in different regions is needed to understand differences in caregivers needs between countries, but also between areas within countries. This study investigated differences in needs and service use between caregivers of autistic children in Morocco, living in urban and rural areas. A total of 131 Moroccan caregivers of autistic children took part in the study and responded to an interview survey. The results showed both similarities and differences between urban and rural living caregivers’ challenges and needs. Autistic children from urban communities were much more likely to receive intervention and attend school than children from rural communities, even though age and verbal skills of the two groups of children were comparable. Caregivers expressed similar needs for improved care and education, but different challenges in caring. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to respond to regional needs, resources, and practices. In addition, the results showed the importance of addressing challenges as experienced by caregivers such as costs related to care, barriers in access to information, or stigma. Addressing these issues may help reduce both global and within-country differences in autism care.
  Citation: Autism
  PubDate: 2023-02-18T06:51:26Z
  DOI: 10.1177/13623613221150086
Prevalence of high-risk conditions for severe COVID-19 among
Medicaid-enrolled children with autism and mental health diagnoses in the
United States
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  Authors: Whitney Schott, Sha Tao, Lindsay Shea
  Abstract: Autism, Ahead of Print.
  Children are at risk of short- and long-term morbidity and mortality from COVID-19. We examine whether autistic children and children with mental health conditions have higher odds of underlying health conditions at high risk of severe disease from COVID-19. We use claims data from a national sample of Medicaid-enrolled children for the years 2008–2016. We examine (1) children with claims for autism and (2) a random sample of children covered by Medicaid, without autism claims but with mental health condition. The comparison group is a random sample of children without autism or any mental health condition. There were 888,487 autistic children, 423,397 with mental health conditions (but not autism or intellectual disability), and 932,625 children without autism or mental health condition. We found 29.5% of autistic children and 25.2% of children with mental health conditions had an underlying condition with high risk for severe illness from COVID, compared to 14.1% of children without these diagnoses. Autistic children had higher odds of having any underlying condition (odds ratio = 2.17; 99% confidence interval = 2.14–2.20), as did children with mental health conditions (odds ratio = 1.71; 99% confidence interval = 1.68–1.73), adjusting for basic demographic characteristics. Children with diagnoses of autism and mental health conditions may be at higher risk for severe COVID due to high-risk condition prevalence.Lay abstractChildren are at risk of varying severity of illness and even death from COVID-19. We aim to determine whether autistic children or children with mental health conditions have more underlying health conditions that put people at risk of severe illness from COVID-19. We use data from a national sample of Medicaid-enrolled children for the years 2008–2016. These data include children across the 50 states and the District of Columbia. We compare the prevalence of underlying conditions among autistic children and children with mental health condition to that of other children in Medicaid. This study included 888,487 autistic children, 423,397 with any mental health condition (but not autism), and 932,625 children without any of these diagnoses. We found 29.5% of autistic children and 25.2% of children with mental health conditions had an underlying condition with high risk for severe illness from COVID, compared to 14.1% of children without these diagnoses. Autistic children had over twice the odds of having any underlying conditions, when accounting for age, race, sex, and other characteristics. Children with mental health conditions had 70% higher odds of having these underlying conditions. Mitigation measures in schools and other areas could minimize risk of short- and long-term impacts from COVID for autistic and all children.
  Citation: Autism
  PubDate: 2023-02-17T10:46:50Z
  DOI: 10.1177/13623613231155265
Psychological, behavioural and biological factors associated with
gastrointestinal symptoms in autistic adults and adults with autistic
traits
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  Authors: EB Warreman, LA Nooteboom, MB Terry, HW Hoek, PJM Leenen, EFC van Rossum, D Ramlal, RRJM Vermeiren, WA Ester
  Abstract: Autism, Ahead of Print.
  Gastrointestinal symptoms and their relation to physical and mental aspects in adults with an autism spectrum disorder (ASD) are poorly understood, despite their high prevalence. Therefore, the aim of this study is to examine psychological, behavioural and biological factors associated with gastrointestinal symptoms in adults with ASD (traits). We included 31,185 adults from the Lifelines Study. Using multivariable logistic regression, we analysed the association between gastrointestinal symptoms and psychological, behavioural (questionnaire-assessed) and physically measured biological factors in adults with ASD (n = 309), without ASD (n = 30,876), and in the quartiles with highest (n = 7783) and lowest (n = 7783) Autism Spectrum Quotient-10 sum scores. In the ASD-group, gastrointestinal symptoms were associated with psychiatric comorbidity (odds ratio: 2.71, 95% confidence interval: 1.51–4.85), more stress (odds ratio: 1.15, 95% confidence interval: 1.06–1.26), and worse perceived health (odds ratio: 2.32, 95% confidence interval: 1.62–3.34). In the quartile with the highest Autism Spectrum Quotient-10 sum scores, gastrointestinal symptoms were also associated with these psychological factors, and with less physical activity (odds ratio: 0.95, 95% confidence interval: 0.92–0.98). Our study demonstrates that not only adults with ASD but also adults with autistic traits are at increased risk for gastrointestinal symptoms, which is associated with psychological and behavioural factors. This suggests that an integrated psychosomatic approach of gastrointestinal symptoms in adults with ASD (traits) is needed.Lay abstractLittle is known about factors related to the increased risk for gastrointestinal symptoms in adults with an autism spectrum disorder (ASD), while the negative impact of gastrointestinal symptoms is evident. Especially, the relationship between gastrointestinal symptoms and psychological, behavioural, and biological risk factors in adults with ASD (traits) is unclear. Autistic peer support workers and autism-advocates also emphasised the importance of identifying risk factors, because of the high prevalence of gastrointestinal problems in people with ASD. Therefore, our study investigated which psychological, behavioural, and biological factors are associated with gastrointestinal symptoms in adults with ASD or with autistic traits. We analysed data from 31,185 adults in the Dutch Lifelines Study. Questionnaires were used to evaluate the presence of an autism spectrum disorder diagnosis, autistic traits, gastrointestinal symptoms, psychological and behavioural factors. Biological factors were examined with body measurements. We found that not only adults with ASD but also adults with higher levels of autistic traits were at increased risk for gastrointestinal symptoms. Adults with ASD who experienced psychological problems (psychiatric problems, worse perceived health, chronic stress) had a higher risk for gastrointestinal symptoms than adults with ASD without these psychological problems. Moreover, adults with higher levels of autistic traits were less physically active, which was also associated with gastrointestinal symptoms. In conclusion, our study highlights the relevance of identifying psychological problems and evaluating physical activity when trying to help adults with ASD or autistic traits and gastrointestinal symptoms. This suggests that healthcare professionals should be more aware of behavioural and psychological risk factors when evaluating gastrointestinal symptoms in adults with ASD (traits).
  Citation: Autism
  PubDate: 2023-02-16T08:35:58Z
  DOI: 10.1177/13623613231155324
‘If I’m just me, I doubt I’d get the job’: A qualitative
exploration of autistic people’s experiences in job interviews
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  Authors: Mikaela Finn, Rebecca L Flower, Han Ming Leong, Darren Hedley
  Abstract: Autism, Ahead of Print.
  Autistic people face many challenges entering the workforce, for example, during job interviews where performance is reliant on particular social skills. To be competitive during job interviews, autistic people may experience pressure to conceal or ‘camouflage’ their autistic traits and behaviour. This qualitative study used semi-structured interviews to explore the job interview experiences of 10 autistic people. Based on the literature, we were curious as to whether participants would report behaviour consistent with the camouflaging hypothesis. Thematic analysis identified six themes reflecting individual and environmental factors. Participants reported engaging in camouflaging behaviour during job interviews, with external factors (e.g. avoid being treated differently) cited as the primary reason. Participants reported that camouflaging required effort, leading to stress, anxiety, exhaustion and feeling ‘burnt out’. They expressed a desire for an inclusive, understanding and accommodating environment where they would feel more comfortable disclosing their diagnosis without feeling they needed to conceal their autistic traits and behaviour. These preliminary findings add to the current literature regarding autism, camouflaging and employment.Lay abstractWhen applying for a job, autistic job candidates are likely to face a number of challenges. Job interviews are one of these challenges – they require communicating and relationship-building with unfamiliar people and involve expectations about behaviour (that may vary between companies and are not made clear to job candidates). Given autistic people communicate differently to non-autistic people, autistic job candidates may be disadvantaged in the interview process. Autistic candidates may not feel comfortable or safe sharing with organisations their autistic identity and may feel pressure to hide any characteristics or behaviour they feel might indicate they are autistic. To explore this issue, we interviewed 10 autistic adults about their job interview experiences in Australia. We analysed the content of the interviews and found three themes that related to the individual person and three themes that related to environmental factors. Participants told us that they engaged in camouflaging behaviour during job interviews, feeling pressure to conceal aspects of themselves. Those who camouflaged during job interviews reported that it took a lot of effort, which resulted in increased stress, anxiety and exhaustion. The autistic adults we spoke to reported a need for inclusive, understanding and accommodating employers to help them feel more comfortable disclosing their autism diagnosis in the job application process. These findings add to current research that has explored camouflaging behaviour and barriers to employment for autistic people.
  Citation: Autism
  PubDate: 2023-02-16T08:32:18Z
  DOI: 10.1177/13623613231153480
Decision-making in autism: A narrative review
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  Authors: Elisa van der Plas, David Mason, Francesca Happé
  Abstract: Autism, Ahead of Print.
  Autistic people often have an atypical profile of abilities: while excelling in some structured paradigms, many report difficulties with making real-life decisions. To test whether decision-making in autism is different from in typically developing controls, we reviewed 104 studies that compared decision-making performance between autistic and comparison participants (N = 2712 autistic and N = 3189 comparison participants) between 1998 and 2022. Our searches revealed four main decision-making paradigms that are widely used in the field of decision neuroscience: perceptual discrimination, reward learning, metacognition and value-based decision-making paradigm. Our synthesis highlights that perceptual processing and reward learning were similar between autistic and comparison participants, whereas value-based decision-making and metacognitive accuracy were often different between groups. Furthermore, decision-making differences were most pronounced when the autistic participant was explicitly probed to report on an internal belief, while implicit markers of the same decision (e.g. error-related response times) were usually not different. Our findings provide evidence in favour of a metacognitive explanation of decision-making atypicalities in autism.Lay summaryMany autistic people report difficulties with real-life decision-making. However, when doing decision-making tests in laboratory experiments, autistic people often perform as well or better than non-autistic people. We review previously published studies on autistic people’s decision-making, across different types of tests, to understand what type of decision-making is more challenging. To do this, we searched four databases of research papers. We found 104 studies that tested, in total, 2712 autistic and 3189 comparison participants on different decision-making tasks. We found that there were four categories of decision-making tests that were used in these experiments: perceptual (e.g. deciding which image has the most dots); reward learning (e.g. learning which deck of cards gives the best reward); metacognition (e.g. knowing how well you perform or what you want); and value-based (e.g. making a decision based on a choice between two outcomes that differ in value to you). Overall, these studies suggest that autistic and comparison participants tend to perform similarly well at perceptual and reward-learning decisions. However, autistic participants tended to decide differently from comparison participants on metacognition and value-based paradigms. This suggests that autistic people might differ from typically developing controls in how they evaluate their own performance and in how they make decisions based on weighing up the subjective value of two different options. We suggest these reflect more general differences in metacognition, thinking about thinking, in autism.
  Citation: Autism
  PubDate: 2023-02-16T08:28:39Z
  DOI: 10.1177/13623613221148010
Sex differences in early autism screening using the Modified Checklist for
Autism in Toddlers, Revised, with Follow-Up (M-CHAT-R/F)
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  Authors: Sherief Y Eldeeb, Natasha N Ludwig, Andrea Trubanova Wieckowski, Mary FS Dieckhaus, Yasemin Algur, Victoria Ryan, Sarah Dufek, Aubyn Stahmer, Diana L Robins
  Abstract: Autism, Ahead of Print.
  Males are more likely to be diagnosed with autism than females, and at earlier ages, yet few studies examine sex differences in screening. This study explored sex differences in psychometric properties, recommended cutoff scores, and overall scores of the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up. Participants were 28,088 toddlers enrolled in four early detection of autism studies. Children (N = 731) at high likelihood for autism attended evaluations after screening and/or primary care clinician concern. Females were less likely to screen at high likelihood for autism at each stage of screening and therefore less likely to be invited for evaluations. Positive predictive value was significantly lower among females than males, but sensitivity was similar. False positive females were likely to have another developmental delay. Cutoff scores for males and females matched recommended guidelines. Final scores on the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up did not differ between males and females diagnosed with autism, but did for the overall sample identified at high likelihood for autism. Our findings suggest that females are less likely to be referred for evaluations, but the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up accurately identifies both males and females with autism at established cutoffs. Future research should examine methods to reduce false positive in females.Lay abstractThis study examined a widely used autism screening tool, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up to identify differences in screening for autism between toddler males and females. Examining sex differences in screening for autism in toddlerhood is important as it determines who will be referred for evaluations and receive diagnoses, which is critical for access to autism-specific early intervention. This study found that females were less likely to screen positive and be invited for evaluations compared with males. Females at high likelihood for autism were less likely to be diagnosed with autism, which decreases confidence in the screener’s results. Importantly, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up accurately identified both males and females with autism. Future research should examine ways to improve accuracy in screening results for females.
  Citation: Autism
  PubDate: 2023-02-14T10:23:01Z
  DOI: 10.1177/13623613231154728
Predicting future sleep problems in young autistic children
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  Authors: Amy M Shui, Linnea A Lampinen, Amanda Richdale, Terry Katz
  Abstract: Autism, Ahead of Print.
  Sleep problems are common in autistic children and adversely impact daytime functioning. Knowledge of predictive factors could help with treatment and prevention of these problems. This study aimed to determine predictors of sleep problems among young autistic children. Study cohorts consisted of autistic children aged 2–5 years who did not have sleep problems at a first visit and had sleep measure data available at a subsequent visit. Sleep problems for five study cohorts were defined by different methods: Children’s Sleep Habits Questionnaire with two cutoff scores (41 and 48; cohort n = 101 and 204, respectively), Children’s Sleep Habits Questionnaire–autism derived cutoff score (35; n = 188), and parent- (n = 205) or clinician- (n = 252) report. Separate predictive models of sleep problems were developed in each cohort using multivariable logistic regression with final model predictors determined by backward elimination selection. Model performance was evaluated. Two of the five models had both adequate discrimination and calibration performance predicting (1) Children’s Sleep Habits Questionnaire score ⩾ 48 and (2) Children’s Sleep Habits Questionnaire–autism score ⩾ 35. In both models, self-injurious behavior, sensory issues, dental problems, and lower primary caregiver education level were significant risk factors of future sleep problems. These predictors may be useful in helping clinicians provide prevention strategies or early intervention for children who are at a higher risk of developing sleep problems.Lay abstractSleep problems are common in autistic children and negatively impact daytime functioning. A method for predicting sleep problems could help with treatment and prevention of such problems. This study aimed to determine predictors of sleep problems among young autistic children. Study participants consisted of autistic children aged 2–5 years who did not have sleep problems at a first visit (Autism Treatment Network Registry) and had sleep data available at a subsequent visit (Registry Call-Back Assessment study). Sleep problems for five study cohorts of children were defined by different methods, including parent questionnaires and parent- or clinician-report of sleep problems. We found that self-injurious behavior, sensory issues, dental problems, and lower primary caregiver education level were significant risk factors of future sleep problems. These predictors may help clinicians provide prevention or earlier treatment for children who are at risk of developing sleep problems.
  Citation: Autism
  PubDate: 2023-02-09T04:48:31Z
  DOI: 10.1177/13623613231152963
Associations between autism traits and family functioning over time in
autistic and non-autistic children
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  Authors: Leontine W ten Hoopen, Pieter FA de Nijs, Geerte Slappendel, Jan van der Ende, Dennis Bastiaansen, Kirstin Greaves-Lord, Leona Hakkaart-van Roijen, Manon HJ Hillegers
  Abstract: Autism, Ahead of Print.
  To explore associations between autism traits and family functioning over time, we studied longitudinal data of a mixed group of 168 clinically referred autistic and non-autistic children. Cross-lagged models showed a significant association between fewer autism traits at the diagnostic assessment and better family functioning 1 year later for the whole group, independently of children’s internalizing or externalizing behavior. When splitting the group into autistic children (58%) and non-autistic children (42%) based on an autism diagnosis, this association was only significant in the subgroup of non-autistic children with autism traits. We hypothesized that the needs of families experiencing difficulty understanding and adjusting to their children with autism traits, but no clinical autism diagnosis, might be unmet without the training or support facilities offered to families with autistic children. Although further research is needed to explore this association, clinicians may also consider supporting families of non-autistic children with autism traits to prevent family functioning problems. Because high autism trait levels in non-autistic children may be of a different origin than autism, for example, other neurodevelopmental or mental health problems, family training or support should be tailored to the child’s underlying difficulties.Lay AbstractLittle is known about family functioning over time when raising a child with autism traits, with or without a clinical autism diagnosis. Therefore, we asked caregivers—mostly parents—of a group of 168 children about the family functioning and the child’s emotional and behavioral characteristics, as well as autistic traits, twice with about 1 year in between. For numerous reasons, the children were referred to youth mental health care centers, including child and adolescent psychiatric services. Care as usual was offered after the diagnostic assessment if a clinical diagnosis was the assessment outcome. Caregivers reported less problematic family functioning in children with fewer autism traits over time. The child’s additional emotional or behavioral characteristics did not seem to influence this relation. Furthermore, we split the whole group into autistic children with a clinical autism diagnosis (58%) and non-autistic children with autism traits but without a clinical diagnosis (42%) to see whether we would find the same results in both groups. Surprisingly, the relation between family functioning and the level of a child’s autism traits only held for the subgroup of non-autistic children with autism traits. Thus, raising children with autism traits without a clinical diagnosis may affect family functioning over time. We think that families might have difficulty understanding and adjusting to the autism traits of their children but are lacking the support that is exclusively offered to families of children with a clinical autism diagnosis. We must be cautious because we do not know whether there is a causal relation. Although further research is needed to explore and learn to understand this result, clinicians might consider offering support to families of children with subthreshold autism to prevent problems in family functioning. Because high autism trait levels in non-autistic children may be of a different origin than autism, for example, other neurodevelopmental or mental health problems, family training or support should be tailored to the child’s underlying difficulties.
  Citation: Autism
  PubDate: 2023-02-08T10:18:05Z
  DOI: 10.1177/13623613231151784
Barriers to service and unmet need among autistic adolescents and young
adults
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  Authors: Karen J Ishler, Kristen A Berg, Tugba Olgac, Rita Obeid, David E Biegel
  Abstract: Autism, Ahead of Print.
  Many of the nearly six million autistic adolescents and adults in the United States require support to navigate daily life. Family members often provide the first line of support for autistic youth by providing care and coordinating services. Although considerable research has examined the perspectives of family members caring for young autistic children, comparatively less has focused on those caring for transition-age youth who often struggle to access needed services as they leave child-serving systems of care. This study examined caregiver-reported barriers to service for 174 adolescents and young adults on the spectrum (ages 16–30) and the association between such barriers and unmet service needs. Exploratory factor analysis suggested two service barrier domains: access (e.g., cost) and quality (e.g., providers not trained). Regression models indicated that caregivers whose youth were diagnosed at older ages perceived both greater access and quality barriers. Male caregivers reported fewer access barriers, and those who perceived greater caregiver burdens (daily life disruptions, financial difficulties, and worries) reported more access barriers. Caregivers whose youth lived with them reported fewer quality barriers. Greater access–but not quality–service barriers predicted greater unmet service needs. Findings have implications for service delivery to autistic youth and specific directions for future research.Lay AbstractPrior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families.
  Citation: Autism
  PubDate: 2023-02-06T05:00:03Z
  DOI: 10.1177/13623613221150569
Intersecting effects of sex/gender and autism on structural language: A
scoping review
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  Authors: Morgan Oates, Allison Bean
  Abstract: Autism, Ahead of Print.
  Despite emerging awareness of gender diversity in the autistic population, our understanding of autism remains limited to cisgender boys and men. We conducted a scoping review to better understand how structural language skills (i.e. syntax, semantics, narrative) differ across sex/gender within autism, and how gender diversity is incorporated in such research. Five research databases were searched for articles that have autistic participants who were not all male, present quantitative results separated by sex/gender, pertain to structural language, and were published between 2000 and 2021. Twenty-four articles met inclusion criteria. One article demonstrated awareness of gender diversity beyond the binary (i.e. girl, boy). Overall, autistic girls performed better than autistic boys but worse than nonautistic girls. Autistic girls are less likely to share the same quality and magnitude of structural language difficulties as autistic boys, which may contribute to their underdiagnosis. Comparing autistic girls to nonautistic girls is more likely to reveal areas of linguistic difference and potential intervention targets. This research provides further support for developing sex/gender-aware diagnostic and support measures for autism. Broader awareness of gender diversity, as both a concept and a prevalent feature of the autistic population, is essential for researchers to continue learning about sex/gender interactions in autism.Lay abstractResearch about autism is mostly about boys and men, even though many autistic people are girls, women, and transgender/nonbinary. We wanted to learn more about how gender interacts with language skills in autistic people, so we reviewed existing research articles on this topic. We also wanted to know how this previous research talked about gender. Included articles had to measure language skills for autistic people of different genders. They also had to be published between 2000 and 2021. Twenty-four articles met these requirements. We found that autistic girls showed better language skills than autistic boys but worse skills than nonautistic girls. This may be one reason that autistic girls are underdiagnosed compared to autistic boys. If we compare autistic girls to nonautistic girls instead, we can see more language differences and possible areas to target in interventions. This study supports the need to create diagnostic and support measures for autism that take gender into account. Also, only one article mentioned autistic people who are transgender or nonbinary. Researchers who want to learn more about gender and autism need to understand gender diversity and recognize that many autistic people are transgender or nonbinary.
  Citation: Autism
  PubDate: 2023-02-04T05:34:29Z
  DOI: 10.1177/13623613221151095
Autism spectrum disorder and personality disorders: How do clinicians
carry out a differential diagnosis'
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  Authors: Clare S Allely, Emma Woodhouse, Raja AS Mukherjee
  Abstract: Autism, Ahead of Print.
  Although it is recognised that autism spectrum disorder (ASD) and personality disorders (PDs) have a variety of factors in common, the exact nature of the relationship between ASD and the PDs remains unclear. The overlapping symptom profiles and complexities in developmental trajectories in ASD and PDs can lead to diagnostic uncertainty and to challenges in determining differential diagnoses. Features of ASD and PD can be misattributed and easily lead to misdiagnosis or missed diagnoses in patients who have a diagnosis of ASD, which may impact therapeutic pathways. Since differentiating between ASD and PD is such a complex task with implications for therapeutic approaches, it has been argued that there is a need for additional understanding and markers for facilitating diagnostic procedures. There is an urgent need to explore how clinicians make diagnostic decisions and the challenges they face in forming diagnostic conclusions. Where overlaps exist, it is important to consider how clinicians interpret and attribute certain characteristics within the context of ASD and/or PD diagnoses.Lay AbstractIt is now recognised that autism spectrum disorder (ASD) and personality disorders (PDs) have a variety of factors in common. However, the exact nature of the relationship between ASD and the PDs remains unclear. The overlapping symptom profiles of ASD and PDs can lead to diagnostic uncertainty – features of ASD and PD can be misattributed and easily lead to misdiagnosis of ASD patients. Since differentiating between ASD and PD is such a complex task, it has been argued that there is a need for additional understanding and markers for facilitating diagnostic procedures. There is an urgent need to explore, first, how clinicians make diagnostic decisions and, second, how to effectively deal with the challenges and difficulties they face when making decisions. Also, where there are clear overlaps, how do clinicians choose how to attribute labels in order to understand the person.
  Citation: Autism
  PubDate: 2023-01-28T03:50:16Z
  DOI: 10.1177/13623613231151356
Individuals with autism spectrum disorder are differentially sensitive to
interference from previous verbal feedback
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  Authors: Phil Reed
  Abstract: Autism, Ahead of Print.
  This study examined whether set-shifting ability for children with autism spectrum disorder without intellectual disability would be affected differentially by verbal or nonverbal feedback as the outcome of previous research tentatively suggests that verbal feedback may lead to slower set-shifting. Overall, 56 children participated (42 male; 14 female); 28 with a diagnosis of autism spectrum disorder (24 male) and 28 (21 male) typically developing children matched on cognitive and verbal abilities. Each group was exposed to a set-shifting task using cards varying in three dimensions. One group of typically developing children, and one group of autism spectrum disorder children, received verbal feedback on their performance, and one group received nonverbal feedback. Children with autism spectrum disorder learned an initial categorisation rule as fast as matched typically developing children. There was little difference in the impact of the type of feedback on acquisition. However, on shifting the classification rule, children with autism spectrum disorder showed slower rates of learning the new rule, relative to matched controls, which was worse when verbal feedback was used compared to nonverbal feedback. This finding has implications for the interpretations of set-shifting performance and for classroom use of feedback strategies.Lay abstractIndividuals with autism spectrum disorder can find behavioural flexibility challenging, often exhibited in terms of repetitive behaviours or restricted ranges of interests and activities. An inability to shift efficiently from one situation to another is connected with problems in daily life, and identifying factors associated with this ability may help develop teaching strategies to improve behavioural flexibility. Some existing findings imply shifting performance for individuals with autism spectrum disorder is better with nonverbal, compared to verbal, feedback – even for those with strong verbal abilities. Unfortunately, there are few behavioural examinations that further explore these findings, which is the aim of this study. In this study, 28 children with a diagnosis of autism spectrum disorder and 28 typically developing children matched on cognitive and verbal abilities learned to sort cards according to one out of a possible three dimensions (colour, shape and number), and then had to relearn the sorting rule. One group of typically developing children, and one group of autism spectrum disorder children, received verbal feedback on their performance, and one group received nonverbal feedback. Children with autism spectrum disorder learned an initial categorisation rule as fast as matched typically developing children, and there was little difference in the impact of the type of feedback on acquisition. However, on shifting the classification rule, children with autism spectrum disorder showed slower rates of learning the new rule, which was worse when verbal feedback was used compared to nonverbal feedback. This finding has implications for the interpretations of set-shifting performance and for classroom use of feedback strategies.
  Citation: Autism
  PubDate: 2023-01-26T03:39:54Z
  DOI: 10.1177/13623613221150377
Suicide and non-fatal self-injury-related emergency department visits
among individuals with autism spectrum disorder
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  Authors: Theodoros V Giannouchos, Judith Beverly, Ilias Christodoulou, Timothy Callaghan
  Abstract: Autism, Ahead of Print.
  We analyzed the Healthcare Cost and Utilization State Emergency Department (ED) Databases and State Inpatient Databases for all individuals who were 2 years of age or older with at least one ED visit from 2011 to 2016 in New York to estimate the association between suicide and non-fatal injury-related ED visits and autism spectrum disorder (ASD). Our study included 14.4 million individuals with 43.5 million ED visits. Of those, 31,946 (0.2%) individuals had ASD accounting for 162,440 ED visits (0.4%). Compared to those without ASD, individuals with ASD had 2.1 more ED visits on average, higher shares of inpatient ED visits, more years of ED utilization, and higher prevalence of mental health-related comorbidities and diagnoses and self-injury-related ED visits. Among the ASD cohort, 6.1% had at least one self-injury-related ED visit compared to 2.2% among those without ASD. Using multivariable regressions adjusted for sociodemographic, clinical, contextual, and visit-level characteristics, we found that individuals with ASD were significantly more likely to have at least one self-injury-related ED visit compared to those without ASD. Our findings highlight the importance of raising awareness among caregivers and providers about the increased self-injury risk that individuals with ASD face and to tailor care delivery practices towards their needs.Lay abstractThis study used data for 14.4 million individuals with 43.5 million emergency department visits from all hospitals in the state of New York to explore the association between suicide and non-fatal self-injury-related (self-injury) emergency department visits and autism spectrum disorder. Overall, we found that individuals with autism spectrum disorder had more emergency department visits and admissions through the emergency department, more years of emergency department utilization, and higher prevalence of mental health-related comorbidities. Individuals with autism spectrum disorder were also significantly more likely to have at least one self-injury-related emergency department visit compared to those without autism spectrum disorder. These results emphasize the need to raise awareness across both family caregivers and healthcare providers on the increased suicide and self-injury risks that individuals with autism spectrum disorder face and to improve care delivery practices. In addition, effort to promote and increase timely access to mental health care is an urgent priority for individuals with autism spectrum disorder.
  Citation: Autism
  PubDate: 2023-01-26T01:46:25Z
  DOI: 10.1177/13623613221150089
Attention control in autism: Eye-tracking findings from pre-school
children in a low- and middle-income country setting
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  Authors: Georgia Lockwood Estrin, Luke Mason, Rashi Arora, Supriya Bhavnani, Jayashree Dasgupta, Sheffali Gulati, Teodora Gliga, Mark H Johnson
  Abstract: Autism, Ahead of Print.
  Alterations in the development of attention control and learning have been associated with autism and can be measured using the ‘antisaccade task’, which assesses a child’s ability to make an oculomotor response away from a distracting stimulus, and learn to instead anticipate a later reward. We aimed to assess these cognitive processes using portable eye-tracking in an understudied population of pre-school children with and without a diagnosis of autism spectrum disorder in community settings in New Delhi, India. The eye-tracking antisaccade task was presented to children in three groups (n = 104) (children with a clinical diagnosis of autism spectrum disorder or intellectual disability and children meeting developmental milestones). In accordance with findings from high-income, laboratory-based environments, children learnt to anticipate looks towards a reward, as well as inhibit eye-movements towards a distractor stimulus. We also provide novel evidence that while differences in inhibition responses might be applicable to multiple developmental conditions, a reduced learning to anticipate looks towards a target in this age group may be specific to autism. This eye-tracking task may, therefore, have the potential to identify and assess autism specific traits across development, and be used in longitudinal research studies such as investigating response to intervention in low-resource settings.Lay abstractThe development of cognitive processes, such as attention control and learning, has been suggested to be altered in children with a diagnosis of autism spectrum disorder. However, nearly all of our understanding of the development of these cognitive processes comes from studies with school-aged or older children in high-income countries, and from research conducted in a controlled laboratory environment, thereby restricting the potential generalisability of results and away from the majority of the world’s population. We need to expand our research to investigate abilities beyond these limited settings. We address shortcomings in the literature by (1) studying attention control and learning in an understudied population of children in a low- and middle-income country setting in India, (2) focusing research on a critical younger age group of children and (3) using portable eye-tracking technology that can be taken into communities and healthcare settings to increase the accessibility of research in hard-to-reach populations. Our results provide novel evidence on differences in attention control and learning responses in groups of children with and without a diagnosis of autism spectrum disorder. We show that learning responses in children that we assessed through a portable eye-tracking task, called the ‘antisaccade task’, may be specific to autism. This suggests that the methods we use may have the potential to identify and assess autism-specific traits across development, and be used in research in low-resource settings.
  Citation: Autism
  PubDate: 2023-01-26T01:40:06Z
  DOI: 10.1177/13623613221149541
‘Maybe we just seem like easy targets’: A qualitative analysis of
autistic adults’ experiences of interpersonal violence
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  Authors: Vicki Gibbs, Elizabeth Pellicano
  Abstract: Autism, Ahead of Print.
  Research has consistently found high rates of victimisation among autistic children. There is emerging evidence that disproportionate victimisation continues into adulthood, however the extent, nature and impact and the mechanisms that underlie high rates of interpersonal violence are not well understood. Here we investigate the nature and impact of violence experiences using qualitative methods. Twenty-two autistic adults who had experienced interpersonal violence during adulthood participated in semi-structured interviews. We analysed the data using a thematic analysis to identify key themes. Violence was commonplace in their own lives and in the lives of other autistic people that they knew, to the extent that violence had become normalised. They spoke of the impacts of these experiences on their mental health, self-concept and subsequent relationships and of how these impacts were exacerbated when their disclosures were dismissed by others. They reported that certain autistic characteristics might make them more vulnerable and of how such characteristics were often shaped by repeated experiences of invalidation and pressure to conform within a neurotypical world. These findings demonstrate the importance of developing ways to improve the personal safety of autistic people which must include the broader social factors that at least partly contribute to these distressing experiences.Lay abstractResearch has consistently shown that autistic children are more likely to be victimised than non-autistic children. More recently, studies have also found that autistic adults report experiencing more violence than non-autistic adults however the circumstances surrounding these incidents and the reasons for this are not clear. We wanted to learn more about violence during adulthood for autistic people including what led up to these incidents and what happened afterwards. We spoke to 22 autistic adults who had experienced violence and analysed what they told us to look for common themes. They told us that violence was commonplace in their own lives and in the lives of other autistic people that they know, so much so that they had even come to expect it to happen. They also talked about the negative effect these experiences had on their mental health, the way they felt about themselves and their ability to trust people. This was made worse if people did not believe them when they disclosed what had happened to them. They told us that certain autistic characteristics might make them more vulnerable like being too trusting or going along with people just to please them. They thought that some of these characteristics had been shaped by their experiences, especially being told that that their thoughts, feelings or behaviours were wrong and being pressured to change the way they behaved to ‘fit in’. These findings are important in helping us to understand how to improve the personal safety of autistic people.
  Citation: Autism
  PubDate: 2023-01-24T05:15:00Z
  DOI: 10.1177/13623613221150375
A longitudinal study of the relationships between sleep problems in
autistic children and maternal mental health
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  Authors: Emma K Baker, Rebecca Giallo, Monique Seymour, Stephen JC Hearps, Catherine E Wood
  Abstract: Autism, Ahead of Print.
  Autistic children experience a high rate of sleep problems, which have been associated with maternal mental health difficulties. However, the directionality of these relationships has received little attention. The extent to which children’s sleep problems influence maternal mental health difficulties and vice versa remains unclear. The aim of this study was to examine the bidirectional relationships between the sleep problems of autistic children and maternal mental health difficulties over 12 years. Six biennial waves of longitudinal data from when children were 4 to 5 years old were drawn from the Longitudinal Study of Australian Children. The sample comprised 397 child–mother dyads. Maternal mental health was assessed with the Kessler-6, while sleep problems were assessed through a series of questions relating to common sleep problems in children. The results demonstrated significant bidirectional effects between maternal mental health and child sleep problems at key developmental transition time points. Specifically, when children transitioned from preschool to primary school and again when the children transitioned from primary school to high school. These findings highlight the need for increased support for both the child and mother at these critical time points to reduce the negative impact of maternal psychological distress on child sleep problems and vice versa.Lay abstractAutistic children experience increased the rates of sleep problems. These sleep problems have been associated with mother’s mental health symptoms. However, the direction of these relationships is not well understood. This study investigated the relationships between autistic children’s sleep problems and mothers’ mental health over a 12-year period using data collected as part of the Longitudinal Study of Australian Children. Data from 397 autistic children and their mothers were included in this study. Mothers completed a questionnaire about their own mental health and common childhood sleep problems at four time points from 4–5 years to 14–15 years. The results showed important relationships between mothers’ mental health symptoms and child sleep problems at two time points. Specifically, (1) mothers’ mental health symptoms when the child was aged 4 to 5 years predicted child sleep problems at age 6 to 7 years; and (2) child sleep problems at age 12–13 years predicted mothers’ mental health symptoms when the child was aged 14 to 15 years. Interestingly, these significant relationships also coincide with key developmental transition time points, when the child is transitioning in and out of primary school. These findings highlight the need for increased support for both the child and mother at these times to optimise outcomes for both.
  Citation: Autism
  PubDate: 2023-01-24T05:13:21Z
  DOI: 10.1177/13623613221147397
Reliability and validity of the Autism Screen for Kids and Youth
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  Authors: Rachelle Lavi, Mark A Stokes
  Abstract: Autism, Ahead of Print.
  Few instruments screen for autism spectrum disorder (ASD) among kindergarteners and older children. The Autism Screen for Kids and Youth (ASKY) is a 30-item parental questionnaire for 4- to 18-year-old children and adolescents available in Arabic, English, and Hebrew. We examined the sensitivity, specificity, and temporal stability of the Hebrew ASKY’s categorizations (“probable ASD” versus “probable non-ASD”) of 167 autistic and non-autistic 4- to 18-year olds. Algorithm-based categorization following The Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition (DSM-5) rules demonstrated 91.8% sensitivity, 71.7% specificity, and excellent test–retest reliability (κ = 0.783, 95% confidence interval (CI) = 0.583–0.983, p
  Citation: Autism
  PubDate: 2023-01-23T10:02:03Z
  DOI: 10.1177/13623613221149542
Neurotypical, but not autistic, adults might experience distress when
looking at someone avoiding eye contact: A live face-to-face paradigm
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  Authors: Elise Clin, Mikhail Kissine
  Abstract: Autism, Ahead of Print.
  Many autistics report being distressed by eye contact, but eye-tracking studies suggest that eye contact is associated with hypo-arousal rather than hyper-arousal in autism. Within a live face-to-face paradigm combining a wearable eye-tracker with electrodermal activity sensors, 80 adults (40 autistics) defined words in front of an experimenter either staring at their eyes (direct gaze condition) or looking elsewhere (averted gaze condition). Autistics did not differ from neurotypicals in their eye behaviours nor their skin conductance responses. Autistics did not appear distressed when they were looking at the experimenter’s eyes in the direct gaze condition. However, neurotypicals, compared to autistics, might experience more stress when looking at the experimenter in the averted gaze condition, even after controlling for social anxiety and alexithymia. In comparison to autistics, neurotypicals might be hyper-aroused when they look at someone avoiding eye contact. Based on a bidirectional perspective on interactional difficulties in autism, we speculate that the neurotypicals’ distress when their attempts to eye contact are not reciprocated could make their behaviour insistent, which, in turn, could make the autistics uncomfortable. In our study, participants’ partner remained passive, displaying no specific reaction when a mutual gaze was shared or not. Future studies should test different partner reactions to gaze in various social contexts.Lay abstractWhat is already known about the topic'Autistics are usually reported to share less eye contact than neurotypicals with their interlocutors. However, the reason why autistics might pay less attention to eyes looking at them is still unknown: some autistics express being hyper-aroused by this eye contact, while some eye-tracking studies suggest that eye contact is associated with hypo-arousal in autism.What this paper adds'This study is based on a highly controlled live face-to-face paradigm, combining a wearable eye-tracker (to study eye behaviours) with electrodermal activity sensors (to assess potential stress). We draw a nuanced picture of social attention in autism, as our autistic participants did not differ from our neurotypical group in their eye behaviours nor their skin conductance responses. However, we found that neurotypicals, compared to autistics, seemed to be much more distressed when their interlocutor did not gaze at them during the experiment.Implications for practice, research or policy:Our study encourages to consider social interaction difficulties in autism as a relational issue, instead as an individual deficit. This step might be first taken in research, by implementing paradigms sensitive to the experimenter’s role and attitude.
  Citation: Autism
  PubDate: 2023-01-23T10:00:24Z
  DOI: 10.1177/13623613221148553
Sex differences in the course of autistic and co-occurring
psychopathological symptoms in adolescents with and without autism
spectrum disorder
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  Authors: Ernst Horwitz, Melissa Vos, Annelies De Bildt, Kirstin Greaves-Lord, Nanda Rommelse, Robert Schoevers, Catharina Hartman
  Abstract: Autism, Ahead of Print.
  There is an ongoing debate as to whether autism spectrum disorder (ASD) is expressed differently in women than men. It is unclear whether differences found are specific to autism or merely reflecting normative development. In this study, we compared sex differences in developmental trajectories of autistic and co-occurring psychopathological symptoms in adolescents with milder forms of autism to those in a normative group matched for intelligence quotient (IQ) and socioeconomic status. Data of five assessment waves from ages 11 to 22 years were analyzed using linear mixed modeling. We found that in adolescence, sex differences in developmental trajectories of psychopathological symptoms specific for autism are confined to the repetitive stereotyped domain (males had higher scores on the sensory/stereotypic and resistance to change domains, the latter difference disappeared during adolescence due to an increase of these problems in females with ASD). Other sex differences, among which an increase over time in affective and anxiety problems in females was the most outstanding, were also observed in typically developing females. These sex-specific differences have relevance in the clinical care of men and women with autism, although they are subtle compared to differences between individuals with and without autism, which are broadly present in internalizing and externalizing problem domains.Lay abstractThere is an ongoing debate as to whether autism spectrum disorder (ASD) is expressed differently in women than men. Studies on sex differences in autistic symptoms and symptoms of other psychiatric problems present in individuals with autism generally do not include a general population comparison group, making it unclear whether differences are specific to autism or merely reflecting development in the general population. In this study, we compared sex differences in the course of autistic and at the same time present symptoms of other psychiatric problems in adolescents with milder forms of ASD to those in a group of the general population with an equal intelligence quotient (IQ) and socioeconomic status. Data of five assessment moments from ages 11 to 22 years were analyzed using a statistic procedure that allowed us to determine which factors affect the course of symptoms over time. We found that in adolescence, sex differences in the course of psychopathological symptoms specific for autism are confined to the repetitive stereotyped domains. Males had higher scores on the sensory/stereotypic and resistance to change domains, the latter difference disappeared during the course of adolescence due to an increase of these problems in autistic females. Other sex differences, among which an increase over time in mood and anxiety problems in females was the most outstanding, were also observed in females without autism. These sex-specific differences have relevance in the clinical care of autistic men and women, although they are subtle compared to differences between individuals with and without autism.
  Citation: Autism
  PubDate: 2023-01-21T11:46:29Z
  DOI: 10.1177/13623613221146477
‘Somali parents feel like they’re on the outer’: Somali mothers’
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  Authors: Jodie Smith, Aspasia Stacey Rabba, Amal Ali, Poulomee Datta, Emma Dresens, Nadia Faragaab, Gabrielle Hall, Melanie Heyworth, Khadra Ige, Wenn Lawson, Rozanna Lilley, Najeeba Syeda, Elizabeth Pellicano
  Abstract: Autism, Ahead of Print.
  Effective parent–teacher partnerships can improve outcomes for autistic students. Yet, we know little about what effective partnerships look like for parents of autistic children from diverse backgrounds. Using participatory methods, we conducted semi-structured interviews with 15 Somali mothers of autistic children attending Australian kindergartens/schools to understand experiences of parent–teacher interactions. We used reflexive thematic analysis to identify key themes. We found that mothers were proud and accepting of their children. They had high expectations, particularly around children’s independence. Mothers wished their children’s differences were understood and supported by other people, including teachers. They were frustrated by low expectations of children, a lack of genuine communication from teachers and limited autism-specific knowledge, skills and experience within schools. They described racist attitudes towards their children and reported that they themselves had experienced stigma. They also had few sources of support to rely upon, although their non-autistic daughters and their faith were important foundations for resilience. Despite all of these challenges, mothers themselves were increasing community awareness and knowledge about autism in the hope that they and their children would be valued by others. Our work has implications for how teachers and schools can foster successful relationships with Somali parents of autistic children.Lay abstractGood relationships between parents and schools can improve autistic children’s school success. There are many reasons why families from different cultural backgrounds find it harder to develop good relationships with schools, such as language barriers, discrimination and unfamiliarity with education systems. We know little about what ‘good relationships’ look like for these families. Here, we worked with a team of autistic and non-autistic researchers as well as an Advisory Group of Somali parents to conduct interviews with 15 Somali mothers of kindergarten and school-age autistic children. We asked mothers about their experiences of their child’s education, communication with teachers and what a good relationship with schools would look like. We also asked how they felt the Somali community understood autism. We looked for common things that mothers said. We found that mothers were very proud of their children. They had high expectations, particularly about what children could do by themselves. Mothers found it frustrating that teachers had low expectations, that schools were not good at communicating with them and that autism-specific skills and experience were uncommon in schools. They also reported racist attitudes towards their children. Mothers experienced stigma and lacked resources, but support was gained from their daughters and their religion. Mothers themselves were proactively increasing community awareness and knowledge about autism in the hope that they and their autistic children would be valued and better supported. Our work has implications for how teachers and schools can work together with Somali parents to forge better futures for autistic children.
  Citation: Autism
  PubDate: 2023-01-21T09:29:20Z
  DOI: 10.1177/13623613221146077
Short report: Prevalence of autism spectrum disorder in a large pediatric
primary care network
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  Authors: Kate E Wallis, Toore Adebajo, Amanda E Bennett, Madison Drye, Marsha Gerdes, Judith S Miller, Whitney Guthrie
  Abstract: Autism, Ahead of Print.
  In this retrospective cohort study using data from an integrated primary care and subspecialty network, we examined medical records of children seen in primary care at eligible autism spectrum disorder (ASD) screening ages and followed through at least 4 years of age. We examined the prevalence of ASD; age of first documented ASD diagnosis; and whether the prevalence and age of documented diagnosis varied by race, ethnicity, socio-economic status (SES) and site of care (urban versus suburban/rural). The prevalence of ASD across the cohort was 3.2%, with a median age of diagnosis of 3.93 years. ASD prevalence was unexpectedly higher among Asian children, non-Hispanic Black children, children with higher Social Vulnerability Index scores (a neighborhood-level proxy of socio-economic risk), and children who received care in urban primary care sites. There were no statistically significant differences in age at which ASD diagnosis was documented across socio-demographic groups. Receiving primary care at an urban site accounted for most other socio-demographic differences in ASD prevalence rates, except among Asian children, who were found to have higher adjusted odds of ASD diagnosis compared to White children (aOR = 1.82, p
  Citation: Autism
  PubDate: 2023-01-18T05:00:09Z
  DOI: 10.1177/13623613221147396
Autistic young people’s experiences of remote psychological
interventions during COVID-19
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  Authors: Lucy Adams, Nicoletta Adamo, Matthew J Hollocks, Jennifer Watson, Aylana Brewster, Lucia Valmaggia, Emma Jewitt, Jodie Edwards, Maisie Krisson, Emily Simonoff
  Abstract: Autism, Ahead of Print.
  Telepsychiatry has been rapidly adopted to help control the spread of coronavirus. Clinicians have raised concerns over this for individuals diagnosed with autism spectrum disorder. The remote delivery of psychological interventions in particular requires further attention as their in-person delivery has autism spectrum disorder–associated challenges which overlap with the challenges of telepsychiatry broadly (i.e. beyond autism spectrum disorder). Autistic service-users (aged 15–18 years, n = 6) and clinicians working with this client group (n = 8) were therefore interviewed about their experience of remote psychological interventions during the pandemic. The sample size was determined using preregistered thematic saturation calculations. Thematic analysis of responses identified challenges/barriers, benefits, facilitators, and factors perceived to cause variability in experiences of remote delivery. These broadly echoed those identified in existing literature, but their underlying reasons had not been explored before and some were novel. Novel findings mostly surrounded difficulties navigating a new social system online, and the intensity of the social interaction feeling reduced remotely. Themes were broadly the same between young people and clinicians, aside from subtle differences. For example, young people provided distinct reasons for some of the perceived benefits. Most participants advocated for the provision of hybrid delivery post-pandemic. Implications of findings are discussed.Lay abstractRecently, therapy has been delivered at a distance (i.e. remotely) to help control the spread of coronavirus. Clinicians have voiced concerns that remote delivery is unsuitable for certain individuals, including those who are autistic, but they have also highlighted potential benefits for autistic individuals. Benefits include some individuals feeling more comfortable receiving therapy at home. This is the first study to interview autistic individuals about their experience of remote therapy. Participants were six young people aged 15–18 years and eight clinicians. Participants described their experience of remote delivery, including challenges, benefits, and suggestions. Most of these supported previous research findings, but some were new or provided further insight into those already identified. A newly identified challenge was knowing online social etiquette. All participants found aspects of the experience challenging, but all identified benefits and most voiced that remote sessions should be offered to young people. Participants further identified individual characteristics that may make someone less suited to remote delivery (e.g. shyness). They also identified ways of making the experience of remote delivery easier (e.g. sitting with a pet). Young people’s and clinicians’ views were similar overall, with only subtle differences. For example, young people uniquely voiced that remote delivery was similar to in-person, that benefits were hard to identify, and provided distinct reasons for the social interaction feeling less intense remotely. Findings may be used to improve remote delivery, for guiding future research, and as a case for continuing to offer it to those who may most benefit.
  Citation: Autism
  PubDate: 2023-01-16T10:40:18Z
  DOI: 10.1177/13623613221142730
How can psychologists meet the needs of autistic adults'
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  Authors: Rachel Jellett, Rebecca L Flower
  Abstract: Autism, Ahead of Print.
  In a recent editorial, Mandy declared an autism mental health crisis and proposed six ideas for how this might be addressed, with which we agree. However, we propose that for these ideas (e.g. training for mental health professionals) to be implemented for psychologists, assumptions about best practice need to be assessed considering the evolving conceptualisation of autism. The formation and development of a therapeutic alliance between a psychologist and client has been established as an important ‘common factor’ that impacts the efficacy of therapy. If one considers the double empathy problem and views autism through a neurodiversity lens, the development of a therapeutic alliance between a psychologist and client of different neurotypes might require an alternative approach to standard practice. We propose that psychologists (if they are, for example, non-autistic and working with an autistic client), are at risk of misinterpreting their clients’ communication and needs. As such, we consider the notion of cultural competency, and how the profession of psychology can move forward to help psychologists work effectively with autistic clients, learning from autistic people, including autistic psychologists.Lay abstractIn a recent editorial, Mandy described an autism mental health crisis because autistic people are more likely to experience mental health concerns, yet they are less likely to get help. When autistic people do seek support, services tend not to be well matched to their needs. Alongside the six ideas Mandy suggested for addressing the mental health crisis, we think it is essential for psychologists to start changing the way they work to improve the person-environment fit for autistic clients. The relationship between a psychologist and their client influences the gains a client makes from engaging in therapy. The way psychologists are trained to build an effective working relationship with clients is based on neurotypical communication styles. The double empathy problem tells us that autistic clients relate to others differently to non-autistic clients, and so we propose that psychologists, especially when not autistic themselves, need to build the therapeutic relationship in a different way. We feel this is important, as the relationship between a psychologist and client is understood to be an important factor in how much the client can benefit from therapy. In this letter, we draw upon Bulluss’ call for cultural competency when working with autistic clients, and further insights from autistic psychologists, and propose that psychologists rethink some taken-for-granted aspects of practice to be better able to create a sense of interpersonal safety when working with autistic clients.
  Citation: Autism
  PubDate: 2023-01-14T06:18:44Z
  DOI: 10.1177/13623613221147346
Psychological strengths and well-being: Strengths use predicts quality of
life, well-being and mental health in autism
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  Authors: Emily C Taylor, Lucy A Livingston, Rachel A Clutterbuck, Mitchell J Callan, Punit Shah
  Abstract: Autism, Ahead of Print.
  Strengths-based approaches to autism are increasing in research and clinical practice. Such approaches suggest facilitating autistic people to increase the use of their strengths leads to positive outcomes (e.g. improved well-being). However, despite proliferation of strengths-based clinical and educational interventions, these approaches are grounded on several assumptions that remain uninvestigated. Little is known about the specific strengths of autistic people, nor their current knowledge and use of their strengths. Critically, no research has directly tested if autistic people’s strengths knowledge and use is in fact associated with positive outcomes. Conducting an exploratory study, including the first well-powered comparisons of the self-reported strengths, strengths knowledge, and strengths use of matched autistic and non-autistic samples (N = 276), we found that autistic and non-autistic participants reported similar strengths. While autistic people reported lower strengths knowledge and use, strengths use in autism strongly predicted better quality of life, subjective well-being, and lower levels of anxiety, depression, and stress. Thus, strength-based approaches and clinical interventions designed to increase strengths use may pose a valuable method for boosting well-being in autism. However, we suggest such approaches should focus on individuals’ strengths more generally, rather than perceived autism-specific abilities.Lay abstractIt is often suggested that supporting autistic people to identify and use their strengths will lead to positive outcomes. However, little research has explored if this is true. To date, no research has explored whether autistic people already have knowledge of and use their strengths, nor whether increased strengths knowledge and use is linked to good outcomes, such as a better quality of life, well-being and improved mental health. Comparing large samples of autistic and non-autistic people, this study tested these unanswered questions. We found that autistic and non-autistic people reported similar strengths, but autistic people reported less knowledge and use of their strengths compared to non-autistic people. Importantly however, autistic people who reported using their strengths often had better quality of life, well-being and mental health than autistic people who reported using their strengths less frequently. We, therefore, propose that supporting autistic people to use their strengths more often may be a valuable way to boost well-being in this population.
  Citation: Autism
  PubDate: 2023-01-14T06:11:05Z
  DOI: 10.1177/13623613221146440
Towards the measurement of autistic burnout
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  Authors: Samuel RC Arnold, Julianne M Higgins, Janelle Weise, Aishani Desai, Elizabeth Pellicano, Julian N Trollor
  Abstract: Autism, Ahead of Print.
  Studies are emerging documenting the experience of fatigue, exhaustion and loss of functioning that has long been described by autistic adults as autistic burnout. New assessment tools are needed to enable identification and diagnosis. Here, we sought to identify factors associated with severity, develop an autistic burnout assessment and test the prepublication AASPIRE Autistic Burnout Measure tool. A co-produced survey of 141 autistic adults with experience of autistic burnout (98% above cut-off for depression) was subjected to exploratory factor analysis and scale reduction to identify a grouping of Autistic Burnout Severity Items. Autistic Burnout Severity Items showed strong overall internal consistency and acceptable internal consistency across four factors. Masking and depression were associated with the Autistic Burnout Severity Items, once variation in alexithymia, interoception, repetitive behaviours, sensory sensitivities and autism severity had been adjusted for. There is some suggestion that the Autistic Burnout Measure may not be as robust as the Autistic Burnout Severity Items, particularly as it showed a significant relationship with depression but not masking. Our findings alongside recent literature highlight a core phenomenon, comprising exhaustion, withdrawal and cognitive overload, associated with stressors potentially unique to autistic people. Further disambiguation from autistic shutdown and other conditions is needed in work towards the measurement of autistic burnout.Lay abstractAutistic burnout has been talked about by autistic adults for some time on blogs and in social media. Now, research describes fatigue, exhaustion and other related symptoms experienced by autistic people. We need new ways to help identify autistic burnout. In this study, we tested a new questionnaire called the AASPIRE Autistic Burnout Measure, and we investigated things that are linked to worse autistic burnout. We also trialled a group of Autistic Burnout Severity Items that we made. Working with an autistic researcher, we made the Autistic Burnout Severity Items based on published definitions of autistic burnout. Autistic adults (n = 141) who had experienced autistic burnout completed an online survey. We found that autistic burnout was connected to masking and depression. The Autistic Burnout Measure tool was associated with depression but not with masking. It was not very accurate in telling apart participants who were currently experiencing burnout versus those who were reporting on their past experience. The Autistic Burnout Severity Items might have problems with subscales adding together to measure autistic burnout. More work is needed on how to measure autistic burnout. Our research and other recent studies show autistic people experience a combination of exhaustion, withdrawal and problems with their concentration and thinking. Burnout seems to be linked to the stress experienced by autistic people in their daily lives. We need more research to understand the difference between autistic burnout and other conditions and experiences. We need to develop assessment tools that can help identify this burnout.
  Citation: Autism
  PubDate: 2023-01-13T02:00:14Z
  DOI: 10.1177/13623613221147401
Confirming the nature of autistic burnout
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  Authors: Samuel RC Arnold, Julianne M Higgins, Janelle Weise, Aishani Desai, Elizabeth Pellicano, Julian N Trollor
  Abstract: Autism, Ahead of Print.
  Autistic burnout is an experience commonly described by autistic people (#AutBurnout and #AutisticBurnout on social media). Recently, two definitions of this syndrome have been published. Both describe debilitating exhaustion with onset related to various stressors including masking, though several differences exist, such as the characteristic of interpersonal withdrawal. We sought to explore the content validity of these definitions including duration and frequency criteria, using descriptive statistics, content analysis and reflexive thematic analysis. A co-produced survey of 141 autistic adults with experience of autistic burnout showed strong endorsement of the definition by Higgins et al., where exhaustion and interpersonal withdrawal occur alongside reduced functioning, executive functioning difficulties, and increased manifestation of autistic traits. Duration and frequency criteria were unresolved, with qualitative data highlighting varying (both acute and chronic) experiences. Autistic burnout is frequently misdiagnosed as depression, anxiety, bipolar disorder, borderline personality disorder or other conditions. Work is needed to increase community and clinician awareness, as well as initiatives to improve unaccommodating neurotypical environments. More research and validation are needed in larger samples not restricted to autistic adults who have experienced autistic burnout to determine prevalence and risk factors as well as duration and frequency.Lay abstractAutistic burnout is something autistic people have been talking about for a while (see #AutBurnout and #AutisticBurnout on social media). Recently, researchers published two different definitions of autistic burnout. We wanted to test these definitions. We wanted to confirm the duration and frequency of autistic burnout. That is, how long and how often do people get autistic burnout' We surveyed 141 autistic adults who had autistic burnout. We used descriptive statistics, content analysis and reflexive thematic analysis to analyse the survey responses. Autistic adults strongly agreed with the definition published by Higgins et al. How long and how often people get autistic burnout was not clear. Participants told us they have both short and long episodes. Participants told us that autistic burnout leads to exhaustion. They needed to withdraw from being with other people. They needed to stay away from autism unfriendly places. Many had been misdiagnosed as having depression, anxiety, bipolar disorder, borderline personality disorder or other conditions. We need increased awareness of autistic burnout. Autistic people need more help. More research is needed, we need to have bigger studies to understand autistic burnout.
  Citation: Autism
  PubDate: 2023-01-13T02:00:05Z
  DOI: 10.1177/13623613221147410
The factor structure and measurement invariance of the Autism Spectrum
Quotient-28: A cross-cultural comparison between Malaysia and the
Netherlands
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  Authors: Zhong Jian Chee, Anke M Scheeren, Marieke De Vries
  Abstract: Autism, Ahead of Print.
  Despite several psychometric advantages over the 50-item Autism Spectrum Quotient, an instrument used to measure autistic traits, the abridged AQ-28 and its cross-cultural validity have not been examined as extensively. Therefore, this study aimed to examine the factor structure and measurement invariance of the AQ-28 in 818 Dutch (Mage = 37.4, 581 females, 233 males, 4 others) and 437 Malaysian (Mage = 23.0, 328 females, 99 males, 10 others) participants from the general population. The hierarchical structure of the AQ-28 showed fair and good fit in Malaysia and in the Netherlands, respectively. A multi-group invariance analysis supported that the AQ-28 is cross-culturally invariant. Malaysians (M = 68.63, SD = 8.33) scored significantly higher than Dutch participants (M = 51.48, SD = 10.30) on the AQ-28 while gender was controlled for. While the measurement invariance suggests that the AQ-28 functions similarly in Malaysia and the Netherlands in terms of structure, exploratory analyses showed 11 items with differential item functioning. Hence, while the AQ-28 possesses a stable factor structure and appears to measure the same latent traits in Malaysia and the Netherlands, some items potentially display cultural bias which, in turn, might explain the differences in AQ scores.Lay abstractThe AQ-28 is a questionnaire measuring autistic traits, that is, traits that are related to Autism Spectrum Conditions, but its reliability in other cultures has not been thoroughly evaluated. We, therefore, tested whether the properties of the AQ-28 are comparable between two countries with different cultures, Malaysia and the Netherlands. A total of 437 Malaysian and 818 Dutch participants completed the AQ-28 online. We measured whether the AQ-28 measures autistic traits similarly in Malaysia and the Netherlands. The AQ-28 measures autistic traits similarly, and the reliability was acceptable and good in the general population of Malaysia and the Netherlands, respectively. However, Malaysians scored higher than Dutch participants. Moreover, 11 AQ-28 items showed cultural bias, indicating that these items are answered/interpreted differently in Malaysia and the Netherlands. Cross-cultural differences in interpreting, reporting, and/or expressing autistic traits highlighted in this study could potentially explain why some items are culturally biased and why Malaysians score higher on these items. The findings of this work imply that cutoff scores derived from one culture should not be generalised to another culture. Moreover, the findings are informative for future development of culturally neutral or appropriate screening and diagnostic tools for autism.
  Citation: Autism
  PubDate: 2023-01-12T09:00:46Z
  DOI: 10.1177/13623613221147395
The lived experience of meltdowns for autistic adults
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  Authors: Laura Foran Lewis, Kailey Stevens
  Abstract: Autism, Ahead of Print.
  Autistic meltdowns have been explored from the perspectives of parents, but there is a paucity of research on the experience of meltdowns from the autistic perspective. Little is known about how adults experience these events. In this descriptive phenomenological study, we conducted online interviews with 32 autistic adults on the experience of having a meltdown. Data were analyzed using Colaizzi’s seven-step method. Six themes emerged from data that captured the essence of meltdowns, including feeling overwhelmed by informational, sensory, social, or emotional stressors; experiencing extreme emotions, such as anger, sadness, and fear; losing logic, including challenges with thinking and memory; grasping for self-control, in which participants felt out of touch with themselves; finding a release for emotions, often described as an “explosion” of external behaviors or self-harm; and minimizing social, emotional, or physical harm by avoiding triggers or self-isolating when possible. Findings highlight the painful and distressing internalized experience of meltdowns beyond behavioral characteristics. Participants shared examples of internal meltdowns, in which external characteristics of meltdowns were camouflaged. Participants also suggested that meltdowns may serve a functional role in regulating emotions and making one’s voice heard. Meltdowns are diverse experiences that hold different meaning to different people.Lay abstractThere is not a lot known about what it feels like for autistic people to have a meltdown. Past research has focused on what meltdowns are like for parents and what meltdowns look like from the outside without understanding what it is like for the person having the meltdown. We asked 32 autistic adults about what it is like for them to have a meltdown. We asked them to tell us about their thoughts and feelings about having a meltdown. Then, we looked for themes in their responses that summarized the meltdown experience. Our findings showed that meltdowns hold different meaning to different people. During a meltdown, we found that most autistics described feeling overwhelmed by information, senses, and social and emotional stress. They often felt extreme emotions, such as anger, sadness, and fear, and had trouble with thinking and memory during the meltdown. Participants described trying to stay in control of themselves, often feeling like they were not themselves during meltdowns. They described the meltdown as a way of letting go of or releasing the extreme emotions they felt. Participants tried to stay away from things or people that might trigger a meltdown or tried to make sure they were alone if they felt a meltdown may be coming as a way of avoiding harm—including harm to their bodies, their emotions, and their relationships. These findings offer an important look into what it is like for autistic adults to have meltdowns from their own point of view.
  Citation: Autism
  PubDate: 2023-01-12T07:15:25Z
  DOI: 10.1177/13623613221145783
Community-guided measurement-based care for autistic youth and adults
receiving psychotherapy: A conceptual overview and pilot implementation
study of MBC-AUT
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  Authors: Jessica M Schwartzman, Zachary J Williams, Ann V Paterson, Alexandra X Jacobs, Blythe A Corbett
  Abstract: Autism, Ahead of Print.
  Measurement-based care is an approach to clinical care that involves systematically evaluating patient-reported outcomes to guide clinical decision making with a strong evidence base in the general population; however, its use in autism is limited. As autistic people are more likely to be diagnosed with psychiatric disorders (e.g. depression, anxiety) and to use psychiatric services (e.g. psychotherapy) than the general population, efforts to enhance clinical care for this population are critical. The current proof-of-concept study presents the development and pilot administration of an autism-adapted measurement-based care (MBC-AUT) system for psychotherapy designed for and with autistic people, as well as preliminary data on the feasibility, acceptability, benefits, and barriers to the adoption of the system for clients and clinicians. Findings from the first 18 youth and adult clients to use the system suggest that the MBC-AUT system is feasible and acceptable. Important benefits of the MBC-AUT system for clients and clinicians were identified through semi-structured interviews, and some barriers to the use of the MBC-AUT system were raised. Potential solutions are presented to address these barriers and to reduce the client and clinician burden. As autistic clients continue to seek psychological services, efforts to enhance the delivery and quality of psychotherapy for this population are essential.Lay abstractAutistic youth and adults are more likely to experience psychiatric symptoms (e.g. depression, anxiety) and to use psychiatric services than non-autistic people, yet research on evidence-based approaches to enhance psychiatric care for autistic people is limited. Measurement-based care is an evidence-based approach to psychotherapy that improves outcomes for clients, clinicians, and organizations by routinely administering and evaluating measures to clients. Despite this, research on measurement-based care systems for autistic clients is sparse. To address this gap, we developed an autism-adapted measurement-based care (MBC-AUT) system for and with autistic people and pilot tested the system in an outpatient psychiatry clinic to investigate the preliminary feasibility, acceptability, benefits, and barriers to this system for clients and clinicians. Findings suggested that the MBC-AUT system was a feasible and acceptable system for the first 18 autistic youth, their caregivers, and autistic adults to use the system. In semi-structured interviews, clients and clinicians discussed the benefits of the MBC-AUT system to various therapeutic processes, as well as several important barriers to the use of the system. We offer potential solutions to address these barriers and to reduce client and clinician burden, and propose future directions for this line of research to increase access to more autistic people. As autistic clients continue to seek psychological services amid social landscapes of increasing complexity (e.g. COVID-19 pandemic), efforts to enhance the delivery of psychotherapy for this population are critical.
  Citation: Autism
  PubDate: 2023-01-12T07:13:25Z
  DOI: 10.1177/13623613221143587
Children with autism exhibit similar longitudinal changes in core symptoms
when placed in special or mainstream education settings
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  Authors: Michal Ilan, Michal Faroy, Ditza Zachor, Liora Manelis, Danel Waissengreen, Analya Michaelovski, Inbar Avni, Idan Menashe, Judah Koller, Ilan Dinstein, Gal Meiri
  Abstract: Autism, Ahead of Print.
  Children with autism spectrum disorder (ASD) are often placed in inclusive mainstream education (ME) or exclusive special education (SE) settings. While ME settings usually offer less-intensive and structured intervention programs than SE settings, they offer more exposure to typically developing peers. A total of 121 children (2–5 years old) with ASD, 85 in SE and 36 in ME, completed two Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) assessments. Repeated-measures analysis of covariance (ANCOVA) analyses were used to assess longitudinal changes in ADOS-2 calibrated severity scores (CSS) and language production (estimated from the ADOS-2), while accounting for baseline cognitive scores, age of diagnosis, and parent-reported intensity of intervention. Longitudinal changes in ADOS CSS did not differ significantly across educational settings but were strongly associated with the age of diagnosis, demonstrating that children diagnosed earlier improved more regardless of educational settings. These findings suggest that children with ASD placed in SE and ME exhibit similar longitudinal changes in core ASD symptoms. Further studies comparing additional outcome measures such as cognitive abilities and adaptive behaviors are highly warranted for establishing placement recommendations and public health policies.Lay abstractToday, children with autism spectrum disorder (ASD) are placed in mainstream or special education settings somewhat arbitrarily with no clear clinical recommendations. Here, we compared changes in core ASD symptoms, as measured by the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) clinical assessment, across ASD preschool children placed in special or mainstream education. Longitudinal changes in ADOS-2 scores did not differ significantly across settings over a 1- to 2-year period. While some children improved in core ASD symptoms, others deteriorated in both settings. This highlights the need to identify specific criteria for establishing meaningful placement recommendations.
  Citation: Autism
  PubDate: 2023-01-12T07:11:00Z
  DOI: 10.1177/13623613221142394
Examination of the impact of the Get SET Early program on equitable access
to care within the screen-evaluate-treat chain in toddlers with autism
spectrum disorder
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  Authors: Christie Pham, Elizabeth C Bacon, Andrea Grzybowski, Cynthia Carter-Barnes, Steven Arias, Ronghui Xu, Linda Lopez, Eric Courchesne, Karen Pierce
  Abstract: Autism, Ahead of Print.
  Delays in autism spectrum disorder identification/services could impact developmental outcomes. Although trends are encouraging, children from historically underrepresented minority backgrounds are often identified later and have reduced engagement in care. It is unclear if disparities exist throughout the screen-evaluate-treat chain, or if early detection programs such as Get SET Early that standardize these steps are effective countermeasures. Pediatricians/primary care providers administered Communication and Symbolic Behavior Scales IT Checklist screens at 12-, 18-, and 24-month well-baby examinations, and parents designated race, ethnicity, and developmental concerns. Toddlers who scored in the range of concern, or whose pediatricians/primary care providers had concerns, were referred for evaluations. Rates of screening and evaluation engagement within ethnic/racial groups were compared to U.S. Census proportions. Age at screen, evaluation, and treatment and quantity was compared across groups. Regressions examined whether key factors were associated with ethnicity or race. No differences were found for mean age of screen, evaluation, initiation of behavioral therapy, or quantity received between racial and ethnic groups. Historically underrepresented minority children were more likely to fall into the range of concern, referred for evaluations, and have their parents express developmental concerns. Although there remain gaps within the pipeline, implementation of systemized programs can be effective in ensuring equitable access to resources across communities.Lay abstractDelays in autism spectrum disorder identification and access to care could impact developmental outcomes. Although trends are encouraging, children from historically underrepresented minority backgrounds are often identified at later ages and have reduced engagement in services. It is unclear if disparities exist all along the screen-evaluation-treatment chain, or if early detection programs such as Get SET Early that standardize, these steps are effective at ameliorating disparities. As part of the Get SET Early model, primary care providers administered a parent-report screen at well-baby examinations, and parents designated race, ethnicity, and developmental concerns. Toddlers who scored in the range of concern, or whose primary care provider had concerns, were referred for an evaluation. Rates of screening and evaluation engagement within ethnic/racial groups were compared to US Census data. Age at screen, evaluation, and treatment engagement and quantity was compared across groups. Statistical models examined whether key factors such as parent concern were associated with ethnicity or race. No differences were found in the mean age at the first screen, evaluation, or initiation or quantity of behavioral therapy between participants. However, children from historically underrepresented minority backgrounds were more likely to fall into the range of concern on the parent-report screen, their parents expressed developmental concerns more often, and pediatricians were more likely to refer for an evaluation than their White/Not Hispanic counterparts. Overall results suggest that models that support transparent tracking of steps in the screen-evaluation-treatment chain and service referral pipelines may be an effective strategy for ensuring equitable access to care for all children.
  Citation: Autism
  PubDate: 2023-01-11T11:08:35Z
  DOI: 10.1177/13623613221147416
Language and communication skills in multilingual children on the autism
spectrum: A systematic review
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  Authors: Christina Sophia Gilhuber, Tracy Jane Raulston, Kasie Galley
  Abstract: Autism, Ahead of Print.
  More than half the global population is estimated to be multilingual, yet research on autistic children who grow up in multilingual environments remains scant. We conducted a systematic review of peer-reviewed studies on multilingualism in autistic children and its impact on children’s language and communication skills. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, our search identified 22 group comparison studies published from 2011 to 2022. The current review addressed two main questions: (a) Which language and communication skills of multilingual autistic children were assessed and how; and (b) how the skills of multilingual autistic children compared with their peers. Semantic-related skills were most frequently reported, while phonology and pragmatics were the most underreported dimensions of language. Most reviewed studies used a combination of direct and indirect language assessments. Available research provides no indication that being exposed to more than one language has adverse effects on the communication skills of autistic children. Although multilingual autistic children often have common autism characteristics, such as pragmatic difficulties affecting their communication skills, preliminary findings also indicate that they may share some advantages of multilingualism with their multilingual nonautistic peers. Studies often excluded participants with co-occurring diagnoses, which may have impacted the generalizability of the findings.Lay AbstractBoth parents and service providers have voiced concerns about the potential negative impact of exposure to multiple languages on the language and communication skills of autistic children. The current literature review summarized research that assessed the language and communication skills of multilingual autistic children in comparison with their autistic and nonautistic peers. After a comprehensive search, 22 relevant publications were identified that met the inclusion criteria of the current review. Thirteen studies used both direct (directly administered screening/diagnostic tools) and indirect language assessments (e.g. parent questionnaires). Receptive and expressive vocabulary was the most frequently assessed language skill. Available research does not support the assumption that bilingualism has negative effects on the language and communication skills of autistic children. The language and communication skills of multilingual autistic children frequently resembled their monolingual autistic peers in both strengths and areas of growth. Preliminary findings indicate that multilingual autistic children may share some advantages of multilingualism with their multilingual nonautistic peers. Studies often excluded participants with intellectual disabilities or complex communication needs, which means that a large population of autistic children is not yet represented in research about the effects of multilingualism.
  Citation: Autism
  PubDate: 2023-01-11T11:04:30Z
  DOI: 10.1177/13623613221147780
Autism research capacity building in Northern Mexico: Preliminary
evaluation of an ongoing process
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  Authors: Georgina Perez Liz, Guillermo Vela, Arturo Vela, Juan R Maldonado Coronado, Patricia Sanchez Lizardi, Diana L Robins
  Abstract: Autism, Ahead of Print.
  Research capacity building is a process by which individuals and organizations develop skills and infrastructure resulting in greater ability to conduct useful research. Frequently, research quality and productivity measures focus on outcomes, such as peer-reviewed publications or grants awarded. Such distal measures are not informative when measuring initial stages of research, a common situation in low- and middle-income countries. This study used Cooke’s six-principle framework to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the years 2018, 2020, and 2022, which correspond to Years 5, 7, and 9 since the beginning of the collaborative, respectively. As of 2022, Principles 2 and 3 (“Close to practice” and “Linkages, collaborations, and partnerships,” respectively) had all begun; no criteria were rated as Not started. The principles with the highest Achieved rates were “Linkages, collaborations, and partnerships” (90%), and “Infrastructure” (Principle 6, 70%). Cooke’s research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels.Lay abstractTo inform improvement of care and public policy, quality research is required. Conducting research projects requires skills and infrastructure. Research capacity building is the process by which individuals and organizations develop greater ability to conduct useful research. However, in the scientific community, research quality and productivity measures are often focused on long-term products, such as publications or grants awarded. Those measures are not helpful when measuring initial stages of research, a common situation in low- and middle-income countries. We used a six-principle framework designed by J. Cooke to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles, and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the Years 2018, 2020, and 2022. The principles with the highest Achieved rates were “Linkages, collaborations, and partnerships” (90%), and “Infrastructure” (Principle 6, 70%). Cooke’s research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels.
  Citation: Autism
  PubDate: 2023-01-11T06:24:55Z
  DOI: 10.1177/13623613221145787
Profiles of the parenting experience in families of autistic children
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  Authors: Jessica L Greenlee, Emily Hickey, Claire R Stelter, Tuyen Huynh, Sigan L Hartley
  Abstract: Autism, Ahead of Print.
  Parents of autistic children experience more parenting stress and are at increased risk for poor mental and physical health compared with parents of neurotypical children; however, not all parents are distressed. The present study used a person-centered analytic approach to identify profiles of the parenting experience in a sample of 183 mothers and fathers of an autistic child (5–12 years old) and to examine associations between profile membership and child outcomes. Results indicated three profiles for mothers: Adaptive (41.1%; high authoritative parenting, lowest stress, and highest competence), Average (42.1%; sample average of all parenting indicators), and Distressed (16.8%; high stress, low competence, maladaptive parenting strategies). Fathers were classified into four profiles: Adaptive (33.3%), Average (37.7%), Distressed—Permissive (15.3%; high stress, low competence, permissive parenting strategies), and Distressed—Authoritarian (13.6%; some stress, lowest competence, authoritarian parenting strategies). The profiles differed on child internalizing and externalizing symptoms and autism symptom severity. Comparative analysis also revealed that children did better when at least one parent was included in the Adaptive group. Implications of these findings are discussed and include fostering empowering messages to parents as well as providing useful new insight in the context of family-focused interventions.Lay abstractResearch shows that parents of autistic children, on average, are stressed; however, there is likely an array of factors that characterize the parenting experience in the context of autism other than stress. Understanding the diversity in the parenting experiences of both mothers and fathers of autistic children is important in the development of family-based intervention. A total of 188 co-habiting couples with an autistic child described their parenting experiences using a series of questionnaires examining their feelings of stress, parenting competence, and parenting attitudes and behaviors. We then sorted responses into profiles—three for mothers and four for fathers. We found that children of parents who reported the least amount of stress, highest feeling of competence, and use of responsive and directive parenting strategies (the Adaptive profile) had children with the least severe behavioral problems and autism symptoms. It was not necessary for both parents to be in the Adaptive category for child emotional and behavioral problems to less severe. We found that children did just as well when one parent was Adaptive compared with when both parents fell into this category.
  Citation: Autism
  PubDate: 2023-01-05T12:50:17Z
  DOI: 10.1177/13623613221147399
Age of autism diagnosis in Latin American and Caribbean countries
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  Authors: Cecilia Montiel-Nava, Maria C Montenegro, Ana C Ramirez, Daniel Valdez, Analia Rosoli, Ricardo Garcia, Gabriela Garrido, Sebastian Cukier, Alexia Rattazzi, Cristiane Silvestre Paula
  Abstract: Autism, Ahead of Print.
  An earlier diagnosis of autism spectrum disorder might lead to an earlier intervention, yet knowledge and awareness of autism spectrum disorder in Latin America and Caribbean Countries are limited. A later autism spectrum disorder diagnosis has been associated with negative consequences, as it might imply later access to services. This study aims to identify factors associated with the age of autism spectrum disorder diagnosis as reported by 2520 caregivers of autistic children from six Latin America and Caribbean Countries. Results indicate that on average, caregivers were concerned about their child’s development by 22 months of age; however, the diagnosis was 24 months later. Current age of autistic individuals, better language abilities, and having public health coverage increased the age of diagnosis. On the contrary, the presence of medical comorbidities, severity level, and type of diagnosis decreased the age of diagnosis. The age of diagnosis of autistic individuals in Latin America and Caribbean Countries corresponded to the start of formal schooling despite a much earlier age of first noticed developmental concern, highlighting the need to reduce this age gap and increase children’s probability of benefiting from early intervention. Taken together, autism spectrum disorder personal/clinical characteristics and access to health service are the main determinants for the age of diagnosis.Lay abstractAn earlier diagnosis of autism spectrum disorder might lead to earlier intervention. However, people living in Latin American and Caribbean countries do not have much knowledge about autism spectrum disorder symptoms. It has been suggested that the older a child is when diagnosed, the fewer opportunities he or she will have to receive services. We asked 2520 caregivers of autistic children in six different Latin America and Caribbean Countries, the child’s age when they noticed some developmental delays and their child’s age when they received their first autism spectrum disorder diagnosis. Results indicate that, on average, caregivers were concerned about their child’s development by 22 months of age; however, the diagnosis was received when the child was 46 months of age. In addition, older children with better language abilities and public health coverage (opposed to private health coverage) were diagnosed later. On the contrary, children with other medical problems and more severe behaviors received an earlier diagnosis. In our study, children were diagnosed around the time they entered formal schooling, delaying the access to early intervention programs. In summary, the characteristics of the autistic person and the type of health coverage influence the age of diagnosis in children living in Latin America and Caribbean Countries.
  Citation: Autism
  PubDate: 2023-01-05T12:46:57Z
  DOI: 10.1177/13623613221147345
Predicting academic success of autistic students in higher education
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  Authors: Theo Bakker, Lydia Krabbendam, Sandjai Bhulai, Martijn Meeter, Sander Begeer
  Abstract: Autism, Ahead of Print.
  Individuals with autism increasingly enroll in universities, but little is known about predictors for their success. This study developed predictive models for the academic success of autistic bachelor students (N = 101) in comparison to students with other health conditions (N = 2465) and students with no health conditions (N = 25,077). We applied propensity score weighting to balance outcomes. The research showed that autistic students’ academic success was predictable, and these predictions were more accurate than predictions of their peers’ success. For first-year success, study choice issues were the most important predictors (parallel program and application timing). Issues with participation in pre-education (missingness of grades in pre-educational records) and delays at the beginning of autistic students’ studies (reflected in age) were the most influential predictors for the second-year success and delays in the second and final year of their bachelor’s program. In addition, academic performance (average grades) was the strongest predictor for degree completion in 3 years. These insights can enable universities to develop tailored support for autistic students. Using early warning signals from administrative data, institutions can lower dropout risk and increase degree completion for autistic students.Laymen SummaryWhat is already known about the topic'Autistic youths increasingly enter universities. We know from existing research that autistic students are at risk of dropping out or studying delays. Using machine learning and historical information of students, researchers can predict the academic success of bachelor students. However, we know little about what kind of information can predict whether autistic students will succeed in their studies and how accurate these predictions will be.What does this article add'In this research, we developed predictive models for the academic success of 101 autistic bachelor students. We compared these models to 2,465 students with other health conditions and 25,077 students without health conditions. The research showed that the academic success of autistic students was predictable. Moreover, these predictions were more precise than predictions of the success of students without autism.For the success of the first bachelor year, concerns with aptitude and study choice were the most important predictors. Participation in pre-education and delays at the beginning of autistic students’ studies were the most influential predictors for second-year success and delays in the second and final year of their bachelor’s program. In addition, academic performance in high school was the strongest predictor for degree completion in 3 years.Implications for practice, research, or policyThese insights can enable universities to develop tailored support for autistic students. Using early warning signals from administrative data, institutions can lower dropout risk and increase degree completion for autistic students.
  Citation: Autism
  PubDate: 2023-01-05T12:44:37Z
  DOI: 10.1177/13623613221146439
Quality and accessibility of written development assessment reports
provided to caregivers in a publicly funded child developmental assessment
service
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  Authors: Martha Munro, Kelsie A Boulton, Natalie Phillips, M Antoinette Hodge, Natalie Ong, David Coghill, Natalie Silove, Adam J Guastella
  Abstract: Autism, Ahead of Print.
  Despite long wait times, public paediatric developmental assessment services remain crucial for the assessment of vulnerable children, particularly those from disadvantaged backgrounds. Assessment represents a critical opportunity to guide the placement of supports to improve functioning and developmental trajectories. There is, however, a lack of research examining how multi-disciplinary assessment services conduct assessments, synthesise results and provide reports to families. This study retrospectively examined 85 reports provided to caregivers at a multi-disciplinary developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on multiple transdiagnostic needs. Recommendations provided in the reports that were related to autism diagnoses were specific and actionable, but reports rarely addressed transdiagnostic needs or comorbidities (e.g. cognitive impairments, mental health). For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than what is typically recommended. Recommendations for future practice are provided to improve the quality of reports and to better meet the needs of children and families attending developmental assessment services.Lay abstractDespite long wait times, public paediatric developmental assessment services remain crucial for assessment of children. Assessment is a critical opportunity to guide the placement of supports to improve outcomes. There is little research examining how clinical assessment services conduct their assessments, present results and write reports to families. This study examined 85 reports provided to caregivers at a developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs. Recommendations related to autism diagnoses were actionable, but they rarely addressed comorbidities such as cognitive impairments or mental health. For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than recommended. Recommendations for future practice are provided so that consideration may be given to how to improve the quality and effectiveness of reports for families attending services.
  Citation: Autism
  PubDate: 2023-01-04T10:45:07Z
  DOI: 10.1177/13623613221145868
Access to employment: A comparison of autistic, neurodivergent and
neurotypical adults’ experiences of hiring processes in the United
Kingdom
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  Authors: Jade Davies, Brett Heasman, Adam Livesey, Amy Walker, Elizabeth Pellicano, Anna Remington
  Abstract: Autism, Ahead of Print.
  Autistic people face high unemployment rates. One reason for this may be that hiring processes are inaccessible. This study aimed to establish autistic people’s unique experiences of hiring processes in the United Kingdom, by comparing them to the experiences of non-autistic neurodivergent people and neurotypical people. Using qualitative and quantitative data from 225 autistic, 64 non-autistic neurodivergent and 88 neurotypical adults, we identified a series of (dis)similarities in participants’ views and experiences of recruitment for employment. Similarities across the three groups included (1) frustration with the focus on social skills; (2) a perceived need for more flexible hiring processes; (3) a desire for more clarity and (4) the importance of the environment. Participants also acknowledged the important role employers play in one’s decision to disclose a diagnosis or access need. Yet, autistic people faced a set of unique barriers to successful recruitment, over and above those that non-autistic people faced. For example, the perceived pressure to mask autistic traits to succeed and concerns about stigma and discrimination. Participants’ recommendations for improvements included the use of more practical recruitment strategies (e.g. work trials), more clarity about what to expect, and improvements in recruiters’ understanding of the challenges autistic and neurodivergent candidates may face.Lay abstractAutistic people are less likely to have a job than non-autistic people. One reason for this may be that hiring processes (e.g. job applications, interviews) can be challenging for autistic people. To better understand the experiences of hiring processes in the United Kingdom, we asked 225 autistic, 64 neurodivergent (but not autistic) and 64 adults with no reported area of neurodivergence questions about their experiences using an online survey. We found a range of similarities and differences in responses. For example, participants in all three groups were frustrated with the focus on social skills in recruitment and said they wanted more practical methods (e.g. work trials) that help them show their skills and abilities. Autistic and otherwise neurodivergent participants discussed the importance of the environment (e.g. the interview/assessment room) in improving experiences. Participants also discussed how employers can impact whether somebody decides to disclose their diagnosis or needs – or not. Autistic people experienced some barriers to successful recruitment that non-autistic people did not. For example, autistic people felt they had to hide their autistic traits to gain employment and many autistic people were worried about being discriminated against if they disclosed that they were autistic during the hiring process. To make experiences better, our participants said that employers should offer candidates different recruitment methods and give them more information about the hiring process. They also said employers should improve their understanding of autism and other hidden disabilities so they know the challenges that people might face during recruitment.
  Citation: Autism
  PubDate: 2023-01-04T10:43:27Z
  DOI: 10.1177/13623613221145377
Mental health–related hospitalizations among adolescents and emerging
adults with autism in the United States: A retrospective, cross-sectional
analysis of national hospital discharge data
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  Authors: Darcy Jones (DJ) McMaughan, Sara Imanpour, Abigail Mulcahy, Jennifer Jones, Michael M Criss
  Abstract: Autism, Ahead of Print.
  Autistic adolescents and emerging adults experience high rates of mental health conditions—a risk factor for hospitalization. Using nationally representative data from the 2016 HCUP KID, we estimated the prevalence and costs of mental health–related hospitalizations for autistic adolescents and emerging adults in the United States. Hospital discharges for ages 10–20 years (n = 1,346,849) were analyzed using survey-adjusted logistic regression and general linear modeling. Mental health–related hospitalizations among autistic young people (n = 14,368) were mostly for neurodevelopmental, disruptive, depressive, and bipolar disorders. Mental health–related hospitalizations were almost 11 times more likely (OR = 10.98, 95% CI = 10.00–12.00) for autistic youth compared youth with complex and chronic conditions, and two times (OR = 2.03, 95% CI = 1.88–2.19) more likely compared to population controls. Predicted mean service delivery costs of mental health–related hospitalizations for autistic adolescents and emerging adults were US$7,401.23 per stay, resulting in US$106 million in estimated total service delivery costs in 2016. Mental health–related hospitalizations can indicate poor quality care, be traumatic, and increase suicide risk. Community mental health care for autistic young people is needed.Lay abstractAutistic young people are more likely to have mental health conditions, like depression and bipolar disorder, than people without autism. These mental health issues sometimes lead to hospitalizations, which can be expensive and traumatic. Because of this, we wanted to understand mental health–related hospitalizations among autistic young people aged 10–20. We found that the main mental health reasons for the hospitalization of autistic young people were neurodevelopmental, disruptive, depressive, and bipolar disorders. These hospitalizations cost an average of US$7401.23 per stay, for a total of US$106 million in service delivery costs in 2016. Mental health–related hospitalizations were compared between young people with autism, young people with complex and chronic conditions, and young people with no chronic conditions. Autistic young people were almost 11 times more likely to be hospitalized for mental health reasons than young people with complex and chronic conditions, and two times more likely than young people with no complex and chronic conditions. We believe the United States needs better community-based mental health care for young people with autism.
  Citation: Autism
  PubDate: 2023-01-04T10:40:57Z
  DOI: 10.1177/13623613221143592
Development of stigma-related support for autistic adults: Insights from
the autism community
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  Authors: Emeline Han, Katrina Scior, Eric Heath, Kana Umagami, Laura Crane
  Abstract: Autism, Ahead of Print.
  Many autistic adults experience public stigma and some internalise this stigma with negative effects on their mental health. While efforts to reduce public stigma are paramount, change can be slow, and interventions to prevent internalised stigma may also be needed. Using a mixed methods online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma-related support programme for autistic adults is needed and, if so, what it should ‘look’ like. Quantitative data (summarised descriptively) showed that most participants felt it was important for autistic adults to have support in managing stigma and revealed diverse preferences in terms of programme delivery, underscoring the need for flexibility. Using reflexive thematic analysis, four main themes were identified from the qualitative data: (1) ‘We need to change society not autistic people’, (2) ‘Stigma is difficult to manage alone’, (3) ‘Focus on positive, practical support’, and (4) ‘There is no one size fits all approach’. We discuss the important implications our findings have for how future interventions in this area are framed and delivered.Lay AbstractMany autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults. Clearly, it is crucial to change how society thinks and acts towards autistic people. There are several programmes that are trying to do this. But as change can be slow, support may also be needed to help autistic people cope with and challenge stigma. Using an online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma support programme for autistic adults is needed and, if so, what it should ‘look’ like. Most participants felt it was important for autistic adults to have support in managing stigma because of the harmful effects that stigma has on mental health and the challenges that autistic adults face in disclosing their diagnosis. However, participants were also concerned that such a programme could convey the message that autistic people, rather than society, need to change. Participants suggested that the programme should be positive and practical, helping autistic adults to understand and accept themselves, as well as learn context-specific strategies for responding to stigma and/or disclosing their diagnosis. They also stressed that the programme should be flexible and inclusive, recognising that autistic adults have very different needs and preferences.
  Citation: Autism
  PubDate: 2023-01-04T10:39:22Z
  DOI: 10.1177/13623613221143590
Daily experiences and well-being of Chinese parents of children with
autism
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  Authors: Hui Wang, Sihan Liu, Jianjie Xu, Xiaoyi Hu, Zhuo Rachel Han
  Abstract: Autism, Ahead of Print.
  Parents of children with autism experience significant stress and challenges in daily life that can impact their well-being. Using a daily diary method, the present study examined the same-day and next-day associations between child-related stress, social support, coping, and parental well-being outcomes (i.e. life satisfaction, positive and negative affect). A total of 76 parents (58 mothers) of autistic children participated in the study and completed daily diaries for 14 consecutive days. Multilevel modeling analyses indicated that child-related stress and social support were associated with same-day life satisfaction only in mothers. Moreover, positive coping on a given day was not only related to more positive affect and higher life satisfaction on the same day but also to higher life satisfaction on the next day, whereas negative coping was only related to higher negative affect and lower positive affect on the same day in both parents. These findings emphasize the benefits of positive coping and social support in raising children with autism, which may contribute toward the further development of existing support programs for parents of children with autism.Lay abstractThe present study examined the influences of child-related stress, parental coping and social support on parental daily subjective well-being (i.e. positive and negative affect, life satisfactory) in Chinese families of children with autism spectrum disorder. For 14 days, a total of 76 parents (58 mothers) participated in the study and completed daily diaries. For mothers, child-related stress was related to lower life satisfaction; social support was related to higher life satisfaction that day. These daily relations were not found for fathers. Across all parents, avoidant coping was associated with higher negative affect and lower positive affect on the same day. Notably, daily positive coping was related to greater same-day positive affect as well as greater same-day and next-day life satisfaction. Interventions aimed at increasing positive coping and social support, and reducing child-related stress and avoidant coping are important to help parents maintain well-being, particularly for mothers of children with autism.
  Citation: Autism
  PubDate: 2023-01-03T07:10:15Z
  DOI: 10.1177/13623613221144191
Parent-to-parent support among parents of children with autism: A review
of the literature
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  Authors: James D Lee, Adriana Kaori Terol, Christy D Yoon, Hedda Meadan
  Abstract: Autism, Ahead of Print.
  Parents of autistic children have historically reported hardships related to raising their children. However, the access to resources related to the childrearing of an autistic child is not equitable, therefore resulting in exacerbated difficulties for parents in low-resource settings. In these situations, peer support may be a protective factor for parental resilience in which they receive various supports from other parents of an autistic child with similar experiences. Despite its potential utility, little is known about such parent-to-parent support as evidenced by no synthesis of relevant literature. To address this gap, we present a scoping review of 25 studies that included parent-to-parent support among parents of autistic children. Across these studies, a total of 141 and 747 parents participated as parent mentors and mentees with some heterogeneity in their demographic characteristics. We also identified how parent mentors were trained to provide support to their peers and social validity data related to parent-to-parent support and provided implications for future intervention research.Lay AbstractParents of autistic children have long reported feelings of isolation and increased stress during and after receiving their child’s diagnosis. Increasing global prevalence of autism also calls for increased services and supports to meet the needs of these families, but most parents who live in low-resource settings still report exacerbated barriers. This may indicate the need for diversifying intervention delivery models to increase contextual fit and enhance implementation effects for different populations. For example, many parents have reported parent-to-parent (P2P) model to be a source of emotional support, advocacy, and knowledge related to their child’s diagnosis, and practical advice. However, little is known about this topic due to the lack of synthesis of relevant autism literature. To address this gap, we conducted a literature review to gain a deeper understanding of how P2P support is used. We identified 25 studies based on our inclusion and exclusion criteria, which we coded to extract variables such as demographic information of participants, types of P2P, dosage, target outcomes, and social validity. About half of studies focused on providing support groups for parents, and the other half focused on individual matching and mentoring for skill acquisition of parents. Across the included 25 studies, a total of 141 parents participated as parent mentors and 747 parents as parent mentees. We also present implications for future research.
  Citation: Autism
  PubDate: 2023-01-02T06:12:19Z
  DOI: 10.1177/13623613221146444
Acceptability and feasibility of a parent-mediated social-communication
therapy for young autistic children in Brazil: A qualitative
implementation study of Paediatric Autism Communication Therapy
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  Authors: Priscilla Brandi Gomes Godoy, Lorna McWilliams, Leticia Rodrigues da Silveira, Mirian de Cesaro Revers Biasão, Fernanda Speggiorin Pereira Alarcão, Leonardo Seda, Renata Generoso Campoli, Holan Liang, Gauri Divan, Kathy Leadbitter, Jonathan Green, Elizabeth Shephard
  Abstract: Autism, Ahead of Print.
  Effective support for autistic individuals is lacking in Brazil. Few centres offer services and those that do are limited in therapeutic options and geographical location. Paediatric Autism Communication Therapy is a low-intensity, evidence-based parent-mediated social-communication intervention that may be useful for this scenario. This implementation study aimed to assess the acceptability and feasibility of Paediatric Autism Communication Therapy for young autistic children (aged 2–10 years) in Brazil. Parents (n = 18) of 2- to 10-year-old autistic children and clinicians (n = 20) who work with autistic children in Brazil were interviewed and the data analysed using thematic analysis to explore their perceptions concerning the acceptability and feasibility of Paediatric Autism Communication Therapy. In addition, Paediatric Autism Communication Therapy was delivered to a case series of 15 further parent–child dyads; these parents were interviewed at the end of the therapy, and the data were analysed using thematic analysis. All parents and clinicians had favourable opinions about the acceptability, feasibility and perceived effectiveness of a parent-mediated intervention conducted mainly in the home. However, they also highlighted obstacles concerning the implementation of Paediatric Autism Communication Therapy in Brazil, especially related to engaging Brazilian parents in a parent-mediated model of therapy. Based on these data, minor adaptations were made to the original Paediatric Autism Communication Therapy protocol to facilitate the implementation of the intervention in Brazil.Lay abstractParents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2–10 years. The therapy is conducted with the autistic child’s parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2–10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2–7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil.
  Citation: Autism
  PubDate: 2023-01-02T06:06:58Z
  DOI: 10.1177/13623613221144501
Health conditions and service use of autistic women and men: A
retrospective population-based case–control study
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  Authors: Ami Tint, Hannah Chung, Meng-Chuan Lai, Robert Balogh, Elizabeth Lin, Anna Durbin, Yona Lunsky
  Abstract: Autism, Ahead of Print.
  This study used administrative data to compare the socio-demographics, health conditions, and health service use of autistic adults with adults with and without other developmental disabilities, after matching for age and sex. Autistic women and men were more likely to have a wide range of physical and mental health conditions compared to adults without developmental disabilities. Rates of co-occurring health conditions were similar or lower among autistic adults compared to adults with other developmental disabilities, except for a higher prevalence of psychiatric conditions among autistic adults. Notably increased psychiatric service use was evident among autistic women and men compared to the other groups. Among age-matched autistic women and men, significant differences were found for physical (i.e. Crohn’s disease/colitis, rheumatoid arthritis) and psychiatric conditions (i.e. psychotic disorders, non-psychotic disorders), as well as service use (i.e. emergency department visits, hospitalizations, family doctor and neurologist visits). These findings suggest autistic adults have high health care needs, as do adults with other developmental disabilities. Mental health support is especially critical for autistic adults and research examining sex and gender effects will assist in tailoring health promotion and intervention efforts.Lay abstractThis study used administrative data from Ontario, Canada to compare the health conditions and service use of autistic women and men with adults with other developmental disabilities and with adults without developmental disabilities. Autistic women and men were more likely to have physical and mental health conditions compared to adults without developmental disabilities. Rates of health conditions were similar or lower among autistic adults compared to adults with other developmental disabilities, except more autistic adults had psychiatric conditions. Autistic women and men used higher rates of psychiatric services compared to all other groups. When comparing autistic women with same aged autistic men, sex differences were found for specific physical (Crohn’s disease/colitis, rheumatoid arthritis) and psychiatric conditions (psychotic disorders, non-psychotic disorders), as well differences in service use (emergency department visits, hospitalizations, family doctor and neurologist visits). These results further highlight the high health needs and service use of autistic women and men, as well as adults with other developmental disabilities. It is critical for future research to focus on mental health support for autistic adults and to better understand how to tailor supports to best serve autistic women.
  Citation: Autism
  PubDate: 2023-01-02T05:59:18Z
  DOI: 10.1177/13623613221144353
Longitudinal relations between autistic-like features and functional
somatic symptoms in adolescence
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  Authors: Elske Hogendoorn, Catharina A Hartman, Sarah M Burke, Marijn W G van Dijk, Judith G M Rosmalen
  Abstract: Autism, Ahead of Print.
  Autistic-like features and functional somatic symptoms (FSS) frequently co-occur. It remains unknown how autistic-like features and FSS affect each other and develop throughout adolescence. This study examined reciprocal relations between autistic-like features and FSS in adolescence. Participants were 2772 adolescents (52.5% male) from the Tracking Adolescents’ Individual Lives Survey population and clinical cohort. Data from four waves were included, covering the ages between 11 and 19 years. Autistic-like features were measured using the Children’s Social Behavior Questionnaire. FSS were assessed using the Youth Self Report and Adult Self Report, respectively. Using the random intercept cross-lagged panel model, a stable positive, moderately strong between-persons association was found between autistic-like features and FSS. No within-persons reciprocal effects from wave to wave were observed. Secondary analyses revealed a consistent relation with FSS for three different domains of autistic-like features (social and communication behaviors, repetitive behaviors, and self-regulatory behaviors), and highly similar interrelations in a subsample of adolescents with a clinical autism spectrum disorder diagnosis. In conclusion, the co-occurrence between autistic-like features and FSS is stable throughout adolescence. Clinicians working with adolescents with autistic-like features should be alert to the presence FSS, and vice versa.Lay abstractAdolescents with autistic-like features frequently experience unexplained somatic symptoms too, and vice versa. We followed 2772 adolescents for 8 years, starting at 11 and ending at 19 years of age. At four different moments during this time, we asked these adolescents how often they suffered from unexplained somatic symptoms, such as stomachache and dizziness. We asked their parents to what extent the adolescents showed autistic-like features at those four moments too. Then, we assessed whether the relation between autistic-like features and unexplained somatic symptoms stayed the same between 11 and 19 years old. We also looked at whether there was a reciprocal influence. So far, most studies only looked into the relation between autistic-like features and unexplained somatic symptoms at a specific moment in time. It is important to study how this relation develops over time in adolescence, so we can improve treatment for burdening co-occurring symptoms. In our sample, adolescents who experienced many autistic symptoms also experienced many unexplained somatic symptoms. This relation stayed the same over time. There was no reciprocal influence, so higher autistic-like features did not contribute to higher unexplained somatic symptoms, or the other way around. The findings of this work tell us that in adolescents with autistic-like features it is important to be alert to the presence of unexplained somatic symptoms, and vice versa.
  Citation: Autism
  PubDate: 2023-01-02T05:50:26Z
  DOI: 10.1177/13623613221143874
We must improve the low standards underlying “evidence-based
practice”
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  Authors: Kristen Bottema-Beutel
  First page: 269
  Abstract: Autism, Ahead of Print.
  
  Citation: Autism
  PubDate: 2023-01-02T06:08:18Z
  DOI: 10.1177/13623613221146441
Erratum to “The ‘Double Empathy Problem’: Ten Years
On”
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  Abstract: Autism, Ahead of Print.
  
  Citation: Autism
  PubDate: 2022-12-27T05:50:08Z
  DOI: 10.1177/13623613221150205
Are autistic people disadvantaged by the criminal justice system' A
case comparison
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  Authors: Rachel Slavny-Cross, Carrie Allison, Sarah Griffiths, Simon Baron-Cohen
  Abstract: Autism, Ahead of Print.
  The UK government identified ‘improving support within the criminal justice systems’ as a priority for autistic people. There is a lack of quantitative research to enable policymakers to make evidence-based decisions on how to improve access to justice for autistic people. This study used a case-comparison design to compare the experiences of 145 autistic and 116 non-autistic adults who had been arrested at some point in their life. Autistic participants were nearly five times more likely to state that they were not given an appropriate adult even though they believed they needed one and felt less able to communicate with the police. Autistic participants felt less able to cope with stress, twice as likely to have experienced meltdowns and five times more likely to have experienced shutdowns because of their criminal justice involvement. We conclude that there are inequalities that autistic people face when navigating the criminal justice system and the degree to which they can participate effectively in the justice process. This has an impact on their mental health. Policy recommendations are discussed based on this evidence.Lay AbstractMost autistic people will never experience being arrested or charged with a crime, however for those who do tend to be less satisfied with the way they were treated. The purpose of this study was to find out if autistic people are being disadvantaged by the criminal justice system if they are arrested. Previous research has shown that autistic people may have difficulties communicating with the police. This study builds on this knowledge by uncovering why autistic people may not feel able to communicate with the police and whether the police made any adjustments to help them. This study also measures the impact of being involved with the criminal justice system on autistic people’s mental health, such as stress, meltdowns and shutdowns. The results show that autistic people were not always given the support they felt they needed. For example, not all autistic people had an appropriate adult with them at the police station who could help to make sure they understood what was happening around them. Autistic people were also more likely to feel less able to cope with the stress and more likely to suffer meltdowns and shutdowns because of their involvement with the criminal justice system. We hope this study will help police officers and lawyers to better support autistic people if they become involved with the criminal justice system.
  Citation: Autism
  PubDate: 2022-12-22T06:55:27Z
  DOI: 10.1177/13623613221140284
Gendered play behaviours in autistic and non-autistic children: A
population-based cohort study
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  Authors: Laura Hull, Hein Heuvelman, Jean Golding, William Mandy, Dheeraj Rai
  Abstract: Autism, Ahead of Print.
  Gender-typical play is observed throughout childhood for non-autistic children. However, there has been limited research into the gender typicality of autistic children’s play compared to that of non-autistic children. In a longitudinal population-based cohort, we compared gendered play behaviours in autistic and non-autistic children using standardised parent-report (30, 42 and 57 months) and child-report (8 years) data (N = 11,251). We observed no difference in gendered play behaviours between girls with or without autism at any time point. Autistic and non-autistic boys did not differ in the gender typicality of their play when aged 30 months, but the play of autistic boys appeared less masculine than that of non-autistic boys (β = −1.1, 95% confidence interval = −2.1 to −0.2; and β = −2.6, 95% confidence interval = −4.7 to −0.5) at 42 and 57 months. Autistic boys also self-reported less masculine play behaviours than non-autistic boys at 8 years of age (β = −3.4, 95% confidence interval = −6.6 to −0.2). We found that autistic boys’ play was less gender typical than that of non-autistic boys in middle and later childhood. Our findings highlight the importance of examining gendered play behaviours in a developmental context and have relevance for understanding the development of gender identity in autism.Lay abstractNon-autistic children tend to show gendered patterns of play behaviours – boys are more likely to play with ‘masculine’ toys, and girls are more likely to play with ‘feminine’ toys. However, little is known about whether autistic children follow these patterns as well. We looked at the masculinity and femininity of autistic and non-autistic children’s play behaviours at multiple time points. Parents reported their children’s play behaviours at ages 30, 42 and 57 months, and children reported their own play behaviours at 8 years old. We found no difference between autistic and non-autistic girls, who both showed more feminine play behaviours as they got older. Autistic boys’ play behaviours were reported as less masculine than non-autistic boys at 42 and 57 months, and at 8 years old. We also found that non-autistic boys’ play tended to become more masculine as they got older, but this was not the case for autistic boys. Our findings suggest that differences in autistic and non-autistic boys’ play behaviours may develop at around 42 months old.
  Citation: Autism
  PubDate: 2022-12-20T02:01:22Z
  DOI: 10.1177/13623613221139373
Tele-assessment of young children referred for autism spectrum disorder
evaluation during COVID-19: Associations among clinical characteristics
and diagnostic outcome
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  Authors: Rebecca McNally Keehn, Brett Enneking, Tybytha Ryan, Cristina James, Qing Tang, Audra Blewitt, Angela Tomlin, Laura Corona, Liliana Wagner
  Abstract: Autism, Ahead of Print.
  Since the onset of the COVID-19 pandemic, there has been a rapid acceleration of innovative research on health services delivery, including real-world clinical implementation and evaluation of tele-assessment for the diagnosis of autism spectrum disorder. Extending this promising work, the present study examined clinical characteristics and diagnostic outcome for young children receiving autism spectrum disorder tele-assessment during the COVID-19 pandemic. The standard tele-assessment procedure included caregiver clinical interview, administration of the TELE-ASD-PEDS (TAP; a novel caregiver-mediated remote autism spectrum disorder observational assessment tool), Vineland-3, and diagnostic feedback and family counseling. Overall, our findings suggest that a definitive autism spectrum disorder diagnosis can be determined for most young children evaluated using standard tele-assessment procedures. While TAP scores and measures of adaptive functioning and Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition autism spectrum disorder symptoms are highly associated with autism spectrum disorder diagnostic outcome, a specific pattern of Restricted and Repetitive Behaviors independently predicted differential autism spectrum disorder outcome. Furthermore, our findings suggest that the TAP is useful for evaluation of at-risk children above 36 months of age with delayed language. These results add to an increasing body of research supporting use of tele-assessment, and specifically the TAP, for diagnosis of young children referred for autism spectrum disorder evaluation.Lay abstractThe diagnosis of autism spectrum disorder (ASD) has traditionally been made through in-person evaluation. While the COVID-19 pandemic disrupted access to ASD services, there has been remarkable growth in research focused on novel ASD diagnostic practices, including the use of telemedicine. We implemented a standard ASD tele-assessment evaluation procedure, including use of a novel remote clinician-coached, caregiver-delivered ASD assessment tool (TELE-ASD-PEDS; TAP), with the goal of continuing to provide diagnostic services to young children and their families during the pandemic. We examined the relationship between child characteristics and diagnostic outcome for 335 children, ages 14–78 months, who received ASD tele-assessment conducted by psychologists and pediatricians in an outpatient clinic of a Midwestern academic medical center. We found that clinicians could make a determination about ASD diagnosis for most children (85%) evaluated using tele-assessment. Child clinical characteristics, including TAP scores and clinician ratings of ASD symptoms, were related to diagnostic outcome (i.e. diagnosis of ASD, no ASD, and Unsure about ASD). When all clinical characteristics were examined together, the presence of specific repetitive behaviors predicted ASD diagnosis. We also found that the TAP is effective for making an ASD diagnosis when used as part of comprehensive tele-assessment evaluation in children ⩾ 36 months of age with delayed language. Our study adds to an increasing body of research supporting use of tele-assessment for diagnosis of ASD. Although further research is needed, telemedicine may help families from different backgrounds and geographic locations to access high-quality diagnostic services.
  Citation: Autism
  PubDate: 2022-12-17T06:25:06Z
  DOI: 10.1177/13623613221138642
Autistic and non-autistic young people’s and caregivers’ perspectives
on COVID-19-related schooling changes and their impact on emotional
well-being: An opportunity for change'
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  Authors: Ann Ozsivadjian, Victoria Milner, Hannah Pickard, Matthew J Hollock, Sebastian B Gaigg, Emma Colvert, Francesca Happé, Iliana Magiati
  Abstract: Autism, Ahead of Print.
  Autistic children and young people experience poorer mental health and well-being compared to their non-autistic peers. Navigating the complex social, academic, procedural and sensory aspects of school may be particularly challenging for autistic young people and contribute to poorer mental well-being. The COVID-19 pandemic caused unprecedented school changes and provided a unique opportunity to gather caregiver’s and young people’s perspectives on the impact of school and pandemic-related school changes on the well-being of both autistic and non-autistic young people. Open-text online survey data from 71 caregivers (of n = 45 autistic young people) and 30 young people aged 11–18 years (n = 18 autistic) gathered across three timepoints between May and December 2020 during the pandemic revealed both benefits and challenges associated with school changes. Insights into possible lessons from the pandemic and recommendations for more flexible, individualised and strengths-based educational practices going forward are discussed.Lay abstractAutistic young people experience poorer mental health and well-being compared to their non-autistic peers. Navigating the complex social, academic, procedural and sensory aspects of school may be particularly challenging for autistic young people and contribute to poorer mental well-being. The COVID-19 pandemic caused unprecedented school changes and provided a unique opportunity to gather caregiver’s and young people’s perspectives on the impact of school and pandemic-related school changes on the well-being of both autistic and non-autistic young people. We asked for the views of caregivers and young people aged 11–18 years gathered across three timepoints between May and December 2020. Their responses revealed both benefits and challenges associated with school changes. Insights into possible lessons from the pandemic and recommendations for more flexible, individualised and strengths-based educational practices are discussed.
  Citation: Autism
  PubDate: 2022-12-15T08:07:29Z
  DOI: 10.1177/13623613221140759
Explicit stigma and implicit biases toward autism in South Korea versus
the United States
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  Authors: So Yoon Kim, Jeong Eun Cheon, Kristen Gillespie-Lynch, Jennifer Grandits, Young-Hoon Kim
  Abstract: Autism, Ahead of Print.
  This cross-cultural study examined Koreans’ and Americans’ explicit stigma and implicit biases toward autism to examine potential mechanisms underlying recent evidence for heightened explicit autism stigma in South Korea relative to the United States. This evidence is somewhat at odds with other evidence that individuals living in collectivistic cultures such as South Korea may be more prone to present themselves favorably than those living in relatively individualistic cultures such as the United States. A total 224 American and 536 Korean non-autistic adult participants completed an online survey. Implicit biases were measured using the implicit association test. Koreans reported greater explicit stigma and exhibited more implicit biases toward autism than Americans. Explicit stigma was not correlated with implicit biases in either country. Less autism knowledge and pleasant contact with autistic people predicted greater explicit stigma among both Koreans and Americans. Less frequent contact and heightened assimilation ideology toward ethnic minorities predicted greater stigma only among Koreans. The variance in implicit biases explained by predictors was small, emphasizing the need for follow-up research investigating predictors of implicit biases. Informing Koreans about the shortcomings of assimilationist approaches and fostering an appreciation of the plurality of cultures may reduce stigma toward autistic individuals in South Korea.Lay abstractHow people report their feelings about autism may be different from how they actually think about autism because some people may not want to reveal their true feelings. People who value the group’s goal tend to present themselves as more socially acceptable than people who value one person’s interests. We studied how people in South Korea and the United States report their feelings about autism and think about autism. Koreans tend to value the group’s goals. Americans tend to prefer one person’s goals. Koreans reported that they wanted more space from autistic people than Americans did. Koreans were more likely to think about autism with negative words (and think more negatively about autism). How Koreans and Americans report their feelings about autism was not related to their thoughts about autism. People who knew about autism and liked meeting with autistic people wanted to get closer to autistic people in South Korea and the US, Koreans who had met autistic people and thought that people who newly came to Korea from abroad should be more like Koreans did not want to get very close to autistic people. This could be because very few foreign people live in South Korea compared to the United States. Teaching Koreans that all cultures have values and should be appreciated will help them like autistic people more.
  Citation: Autism
  PubDate: 2022-12-15T08:02:32Z
  DOI: 10.1177/13623613221140695
An initial trial of OPT-In-Early: An online training program for
caregivers of autistic children
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  Authors: Yael G Dai, Rebecca P Thomas, Lynn Brennan, My-Linh Luu, Jamie Hughes-Lika, Molly Reilly, Paula Moreno, Brenda Obe, Kelli B Ahmed, Leandra N Berry, Robin P Goin-Kochel, Molly S Helt, Marianne L Barton, Thyde Dumont-Mathieu, Diana L Robins, Deborah A Fein
  Abstract: Autism, Ahead of Print.
  Online Parent Training in Early Behavioral Intervention (OPT-In-Early) is a self-directed resource for caregivers of autistic children. Sixty-three parent–child dyads from three states in were randomized to the OPT-In-Early or treatment as usual group. Parents in both groups completed baseline and post-treatment visits, which were targeted for 4 months apart but allowed to go up to 6 months. Compared to parents in the treatment as usual group, parents randomized to OPT-In-Early learned more evidence-based intervention principles from baseline to post-treatment and were rated by observers blind to group and time as increasing their use of these strategies during brief semi-structured interactions with their children. Parent participation in OPT-In-Early did not significantly influence children’s social communication as coded from one observation session. Results suggest that parents acquired knowledge and skills in intervention techniques from OPT-In-Early. Longer trials may be needed for gains in child behavior.Lay abstractEarly intervention can help children learn language and improve social communication. However, many barriers, including the expense of services and an insufficient number of providers, prohibit families from accessing services when their children are young. We developed a comprehensive online program for caregivers of autistic children. The program, Online Parent Training in Early Behavioral Intervention (OPT-In-Early), uses text and video demonstrations to teach caregivers effective methods for improving their children’s language, social, and adaptive skills (e.g. using utensils, toilet training), and reducing their children’s disruptive behavior. Sixty-three parents from three states participated in the study. Half of the parents received access to the OPT-In-Early program. After 4 months, parents who had access to the OPT-In-Early program learned more effective intervention strategies, and started using these strategies during interactions with their children, than parents who did not receive access to the program. Parent participation in OPT-In-Early did not significantly influence children’s social communication compared to children whose parents did not have access to OPT-In-Early. A longer duration of parents using learned intervention skills with their children may be needed for children’s social communication skills to improve.
  Citation: Autism
  PubDate: 2022-12-15T01:14:19Z
  DOI: 10.1177/13623613221142408
How my life is unique: Sibling perspectives of autism
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  Authors: Priscilla Burnham Riosa, Rebecca Ensor, Brynn Jichici, Brittany Davy
  Abstract: Autism, Ahead of Print.
  The impact of autism on the family is an area of study that merits further research attention. Much of the existing literature has focused on the parent perspective, with less emphasis on the experiences of other family members, particularly non-autistic siblings. This study aimed to explore the lived experiences of a sample of nine 8- to 17-year-old non-autistic siblings of children and youth on the autism spectrum. We interviewed siblings and analysed transcripts using interpretative phenomenological analysis. Our results revealed the following Group Experiential Themes: (1) Role disparities, different expectations; (2) Connection and disconnection; and (3) Our family is (extra)ordinary. Our study findings highlight the unique and collective perspectives of siblings regarding their brother or sister on the spectrum within the broader family dynamic. We discuss the implications of these results on siblings of autistic children and youth.Lay abstractThe impact of autism on the family is an important area of study. Much of the existing literature has focused on the parent perspective, with less emphasis on the experiences of other family members, especially non-autistic siblings. This study aimed to explore the lived experiences of a sample of nine 8- to 17-year-old non-autistic siblings of children and youth on the autism spectrum. We interviewed non-autistic siblings and analysed the written transcripts. Our results revealed the following themes: (1) Role disparities, different expectations; (2) Connection and disconnection; and (3) Our family is (extra)ordinary. Our study findings highlight siblings’ unique and collective perspectives regarding their brother or sister on the spectrum within the broader family unit. We discuss the implications of these results on siblings of autistic children and youth.
  Citation: Autism
  PubDate: 2022-12-15T01:07:39Z
  DOI: 10.1177/13623613221142385
Short report: A co-designed psychoeducation for older autistic adults-a
multiple case study
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  Authors: ER Groenendijk, BFC Van Heijst, HM Geurts
  Abstract: Autism, Ahead of Print.
  There are currently no old-age specific interventions for autistic adults. Therefore, in this explorative study, we examined the possible effects of a co-designed psychoeducation program for older autistic adults (55+ years), with a multiple case study design (N = 9, age 56–73 years; Netherlands Trial Register (code Trial NL5670)). For each participant, also a person close to them (a proxy) participated. This allowed us to calculate a discrepancy score regarding autistic traits and cognitive challenges. The main hypothesis was that our program, delivered after general psychoeducation, would result in a discrepancy reduction between self and proxy reports. However, contrary to our hypothesis, we observed neither intervention effects on our primary outcome measures (discrepancy scores) nor the secondary outcome measures (mastery, self-efficacy, self-esteem, self-stigmatization, quality of life, and hope and future perspectives). Thus, despite co-designing the current intervention, the results were not promising. However, the positive feedback and suggestions of the participants make developing an improved version of a specific psychoeducation program for older autistic adults still a worthwhile pursuit.Lay abstractAfter receiving an autism diagnosis by a clinician, psychoeducation (i.e. information regarding autism) is often offered. However, older autistic adults (55+ years) may need specific information about the challenges they face in daily life as they are in a specific life phase. A psychoeducation program for this specific age group does not exist yet. We first developed such a program together with autistic adults and clinicians working with autistic people, after which we tested the program with nine autistic adults (56–73 years) and someone close to them (so-called proxy). Before testing the program, we determined together with autistic older adults what they thought should be the outcome of this intervention in order to state whether it was, indeed, a useful intervention. Earlier studies found that autistic people often think differently about their own autistic characteristics than their proxy. A reduction of this difference could increase mutual understanding. Therefore, the main hypothesis was that the program would decrease this difference with respect to autistic characteristics and cognitive challenges (e.g. memory problems). Another hypothesis was that the program would have a positive impact on a series of other factors, such as self-esteem. The results showed that the program did neither decrease the difference in insight nor the other tested factors. Nonetheless, we believe it is important to keep on working on a psychoeducation program for older autistic adults, because participants informed us the program had still helped them in certain ways and they gave helpful feedback for improvements of the program.
  Citation: Autism
  PubDate: 2022-12-15T01:06:06Z
  DOI: 10.1177/13623613221138691
Understanding language preference: Autism knowledge, experience of stigma
and autism identity
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  Authors: Simon M Bury, Rachel Jellett, Alex Haschek, Michael Wenzel, Darren Hedley, Jennifer R Spoor
  Abstract: Autism, Ahead of Print.
  Prior research has studied preferences for identity- or person-first language among persons with an autism diagnosis. The current study differs from this previous body of research by specifically examining quantitative predictors of language preferences through a social identity theoretical approach, thereby leading to a better understanding of psychological and social factors that might underlie language use and preference within the autistic community. Australian adults with an autism diagnosis (N = 198) completed the measures of autism knowledge, internalised stigma, and autism identity to determine whether these factors predict language preference. Results indicated a stronger autism identity was associated with a preference for identity-first terms (autistic/autistic person) and finding these less offensive. Contrastingly, stigma was associated with finding identity-first language less favourable and more offensive. Person-first terms (e.g. person with autism) were not associated with any of the predictors. Together, these findings suggest decision-making around identity-first language is influenced by a strong sense of autistic identity and experiences of stigma.Lay abstractThere is ongoing discussion around what language is acceptable when talking about someone with an autism diagnosis, especially regarding person-first (e.g. person with autism) or identity-first (e.g. autistic person) language. We asked 198 Australian adults with an autism diagnosis what terminology they prefer and what they find offensive. We also asked questions to understand their experience of stigma, their autism knowledge and how much they endorse an autism identity, to investigate if these factors were associated with their language preferences. Overall, there was no significant association between these three factors and person-first terminology. For identity-first terms, those who endorse a stronger autism identity tended to find identity-first terms more preferable and less offensive, whereas those who reported greater experiences and internalisation of stigma tended to find identity-first terms less preferable and more offensive. Previous research has tended to ask what language participants prefer. The findings of this work help provide some context as to why people prefer or find offensive specific terms, at least for identity-first language.
  Citation: Autism
  PubDate: 2022-12-13T08:58:56Z
  DOI: 10.1177/13623613221142383
‘We are doing damage control’: Government stakeholder perspectives of
educational and other services for children with autism spectrum disorder
in South Africa
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  Authors: Sarosha Pillay, Madeleine Duncan, Petrus J de Vries
  Abstract: Autism, Ahead of Print.
  Autism spectrum disorder is a growing public health concern in low-and middle-income countries that has prompted a World Health Organization resolution on ‘comprehensive and coordinated efforts for management of autism spectrum disorder’. Despite being a signatory of the resolution, South Africa does not have any national policies to guide the management of autism spectrum disorder services. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their proposed solutions to meet the needs of autistic children and their families. The overarching theme that emerged was ‘We are doing damage control’. Government stakeholders acknowledged that autism spectrum disorder services were falling between the ‘cracks’ caused by competing societal demands on government resources. Participants shared perspectives about autism spectrum disorder services in three categories: a cracked society, siloed service systems and gap-filling strategies. Findings from this study highlighted the need for collaborative efforts between government departments and civil society to develop a strategy for autism spectrum disorder in line with the World Health Organization resolution. Multistakeholder engagement to break down barriers, strengthen systems and develop innovative solutions to improving services for children with autism spectrum disorder and their families is recommended.Lay abstractAutism spectrum disorder is a growing public health concern in low- and middle-income countries like South Africa where there are no plans or policies in place for autism spectrum disorder management. Many children with autism spectrum disorder in South Africa are out of schools and waiting for school placement to become available. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their suggestion for improving services for these children and their families. Semi-structured interviews were conducted with government stakeholders from the Western Cape Department of Education, Department of Health and the Department of Social development. The main theme that emerged was ‘We are doing damage control’. Government stakeholders acknowledged that autism spectrum disorder services were being overlooked because of other demands on government resources. Finding from this study highlighted the need for government departments to work together to develop a strategy for autism spectrum disorder management. Engagement between government and civil society to break down barriers, strengthen systems and develop solutions to improving access to services for children with autism spectrum disorder and their families is recommended.
  Citation: Autism
  PubDate: 2022-12-13T08:55:36Z
  DOI: 10.1177/13623613221142111
Perspectives from parents of autistic children on participating in early
intervention and associated research
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  Authors: Catherine A Bent, Elizabeth Pellicano, Teresa Iacono, Kristelle Hudry
  Abstract: Autism, Ahead of Print.
  Early support should help autistic children lead flourishing lives. We sought to understand parents’ experiences of their children’s involvement in early intervention and associated research, through focus groups with 23 parents (of 22 children) enrolled in a university-affiliated service. Reflexive thematic analysis revealed four themes. Parents conveyed a strong sense of gratitude (Theme 1) arising from their perceptions of the importance of early intervention and feelings of having ‘hit the jackpot’ to secure access to the service from which they perceived their children ‘gained so much’. They valued the service and staff expertise which made them feel secure (Theme 2). University affiliation and the associated research also contributed to parents’ sense of safety, from perceived ‘accountability’ and ‘integrity’. Parents conveyed deep commitment to the service (Theme 3) but shared often-negative experiences as their child’s enrolment came to an end (Theme 4) and they expressed feelings of abandonment and disempowerment, being confronted with the reality of needing to secure next-stage support for their children and of perceived critical need for ‘conversion of research into practice’. These parents’ accounts offer insights into the benefits and ongoing challenges of achieving truly effective supports for autistic preschoolers and their families.Lay abstractSupport for autistic children early in life should help them to lead flourishing lives. However, many of the early intervention programmes for young autistic children are time-consuming and costly for families. These programmes are also often conducted in settings that are not closely matched to real life. We spoke to 23 parents (of 22 autistic children) to understand their experiences of their children’s involvement in early intervention. Parents told us they were grateful for the opportunity, that they had ‘hit the jackpot’, and their children had ‘gained so much’ from the programme. They seemed to value the service because it made them feel safe and secure during an uncertain time in their children’s lives. Parents told us they trusted staff, felt that they weren’t ‘doing it alone’, and this ‘took that pressure off’ and helped them feel empowered. They also spoke of feelings of safety from being linked to the university research programme which offered ‘accountability’ and ‘integrity’. Parents’ comments showed a strong commitment to the early intervention model and staff – but also common feelings of abandonment and disempowerment as their child’s time with the programme came to an end and they went ‘back to the real world’ and needed to find new supports for their children. These parents’ insights should help to inform the design and delivery of community supports for preschool-aged autistic children and their families, which match the reality of their lived experiences.
  Citation: Autism
  PubDate: 2022-12-13T08:53:56Z
  DOI: 10.1177/13623613221141540
A cross-cultural comparison of a measure of parent perceptions among
families of children with autism in Vietnam
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  Authors: Dieu M Truong, Sarah S Mire, Susan X Day, Lan Ni, Milena Keller-Margulis
  Abstract: Autism, Ahead of Print.
  Most current autism research focuses on Western countries, where service availability and cultural experiences differ from those of individuals living in Asian countries, where collectivistic cultural values prevail and understanding of autism is emerging. By gathering data from Vietnamese parents of autistic children (N = 339), the current measurement study examined measure variance and invariance between the English version of the Illness Perception Questionnaire- Revised for Autism Spectrum Disorder (IPQ-R-ASD) and a Vietnamese translation of it, at the item, scalar, and factor levels. Results indicated measurement variance for only three of 37 items and highlighted different perceptions of autism between Vietnamese and North American parents, based on responses to the IPQ-R-ASD. Responses indicated that Vietnamese parents may have a different interpretation of the questions. Seven factors emerged on both the Vietnamese and English instruments, but items loaded differently, and a distinct factor emerged on the Vietnamese version. In sum, the current findings suggest that the IPQ-R-ASD can be useful for better understanding Vietnamese parents’ perceptions of their children’s autism, but the interpretation is somewhat different than on the English version, highlighting the importance of cross-cultural considerations in the study of autism in Western versus Eastern cultures.Lay abstractRaising an autistic child can affect many aspects of families’ lives. Parents are responsible for many decisions, from initiating evaluation to selecting and implementing treatments. How parents conceptualize the course and nature of their child’s diagnosis influences these processes and parents’ own well-being. Parents’ perceptions about their children’s autism are also affected by cultural contexts and understanding of autism. The Illness Perception Questionnaire-Revised (IPQ-R) is widely used to study cognitions in chronic health research and has been adapted and validated to measure parents’ perceptions and beliefs about their children’s ASD (IPQ-R-ASD). However, such studies are mostly conducted in high-income countries (HICs) with western, individualistic cultural values (e.g. United States, Canada). Therefore, it is unclear whether the IPQ-R-ASD is a useful instrument in understanding parents’ perceptions of autism in Vietnam, a lower- and middle-income country (LMIC) with collectivistic Asian cultural values. These differences suggest that parents in Vietnam may have cognitive representations of their children’s autism that differ from those of parents living in HIC, western countries. The purpose of this study was to examine the usability of the translated Vietnamese IPQ-R-ASD that may, ultimately, help explore Vietnamese parents’ autism perceptions. While the study’s result indicated the usability of the translated measure in Vietnam, when interpreted with Vietnamese norms, results also highlighted notable differences between Vietnamese and North American parents’ perceptions of autism that warrant further research.
  Citation: Autism
  PubDate: 2022-12-13T08:52:36Z
  DOI: 10.1177/13623613221141262
Acceptance and commitment therapy for autistic adults: A randomized
controlled pilot study in a psychiatric outpatient setting
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  Authors: Johan Pahnke, Markus Jansson-Fröjmark, Gerhard Andersson, Johan Bjureberg, Jussi Jokinen, Benjamin Bohman, Tobias Lundgren
  Abstract: Autism, Ahead of Print.
  Autistic adults are at risk of stress-related psychiatric disorders and reduced life quality due to social, cognitive, and perceptual challenges. Mental health interventions adapted to autistic adults are scarce. Acceptance and commitment therapy has preliminarily indicated health benefits in autistic adults, although it has not been robustly evaluated. Overall, 39 adults (21 males; 21–72 years) with autism spectrum disorder and normal intellectual ability (IQ M = 108.5; SD = 13.5) were randomized to 14 weeks of adapted acceptance and commitment therapy group treatment (NeuroACT) or treatment as usual. The intervention was feasible. Perceived stress and quality of life (primary outcomes), alongside psychological inflexibility, cognitive fusion, cognitive and behavioral avoidance, and autistic mannerism were statistically significantly improved in NeuroACT compared with treatment as usual (d = 0.70–0.90). Clinically significant changes in perceived stress and quality of life were in favor of NeuroACT. Between-group altered depression, anxiety, sleep problems, one quality of life measure, functional impairment, social aspects of autism, and executive difficulties were statistically non-significant. Dropout was slightly higher in NeuroACT. NeuroACT may be a promising treatment for autistic adults with co-existing stress and reduced quality of life. More extensive studies are warranted to evaluate NeuroACT further.Lay abstractAutistic adults are often stressed and feel depressed or anxious. However, mental health programs that are suited for autistic adults are few. Acceptance and commitment therapy is a psychotherapy method that seems to help people feel better, although not thoroughly evaluated in autistic individuals. In this study, 20 autistic adults had 14 weeks of acceptance and commitment therapy group treatment suited for autism (NeuroACT), while 19 autistic adults had ordinary care. The acceptance and commitment therapy group treatment program seemed logical and reasonable to the participants. Also, when comparing the participants in the NeuroACT group with those in the ordinary care group, the NeuroACT participants reported less stress and higher quality of life. Compared to the ordinary care group, they could also manage distressing thoughts better, perceived themselves as more flexible, and did not avoid stressful situations as much as before. However, there was no significant difference between the groups in depression, anxiety, sleep problems, social aspects of autism, everyday functioning, or executive challenges. Slightly more NeuroACT participants did not finish the treatment than ordinary care participants. In conclusion, the NeuroACT program may be a treatment for autistic adults who feel stressed and have reduced quality of life. More studies are needed to see how helpful the NeuroACT program is for autistic adults.
  Citation: Autism
  PubDate: 2022-12-13T08:50:36Z
  DOI: 10.1177/13623613221140749
Realist evaluation of a transdisciplinary mealtime management service for
autistic children
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  Authors: Wai Ting Chan, Christina Li Ern Chong, Zhao Min Goh, Chrystal Xin Xuan Ling, Ruyi Tong, Madeline Davey, Melissa H Black
  Abstract: Autism, Ahead of Print.
  Autistic children commonly experience mealtime difficulties; however, it is unknown what makes an effective transdisciplinary mealtime service for autistic children. This study used a realist evaluation framework to explore caregivers’ and therapists’ perceptions of the contexts, mechanisms and associated outcomes of a transdisciplinary mealtime management service for autistic children. Semi-structured interviews were conducted with six caregivers of autistic children engaged in a transdisciplinary mealtime service and 10 therapists providing the service, with interview data analysed using a realist evaluation approach. Four-context (child factors, family factors, therapist factors and institutional parameters), three-mechanism (transdisciplinary collaboration, child-centred approach and managing caregiver expectations) and two-outcome (impact on the child and impact on the caregiver) themes were identified. Findings highlighted that transdisciplinary collaboration, a child- and family-centred approach and managing caregiver expectations are key mechanisms providing a foundation for the development of evidence-based mealtime services for autistic children.Lay abstractMealtimes and eating can be difficult for autistic children. A service where different professions work together is required to address the varied and complex mealtime difficulties of autistic children. Little is known about what is needed for such services to be effective. We interviewed six caregivers of autistic children who were engaged in a mealtime service and 10 therapists who are involved in delivering the service to understand their perspectives on the factors that were driving the effectiveness of the mealtime service. We found that different health professionals from different disciplines working together, focusing on adapting intervention to the child and family and managing expectations of the caregiver were important in contributing to outcomes of the mealtime service. The findings of this study can be used to inform the development of more effective interventions and services to support the well-being and development of autistic children.
  Citation: Autism
  PubDate: 2022-12-13T08:48:29Z
  DOI: 10.1177/13623613221140717
Cost-benefit analysis of a non-government organization and Australian
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  Authors: Darren Hedley, David FE Hedley, Emmanuelle Walkowiak, Simon M Bury, Jennifer R Spoor, Alan Shiell
  Abstract: Autism, Ahead of Print.
  We present a cost-benefit analysis of an Australian Government sponsored 3-year supported employment program for autistic adults—the DXC Dandelion Program—in the information and communications technology sector. We explored the range of direct costs associated with running the program, benefits to participants, and avoided costs to the government. Estimates were based on data from 56 (86% men; Mage = 25.28, standard deviation [SD] = 8.36 years) autistic participants in the program. The program generated a high benefit ratio for government, mainly driven by increases in wage rates and hours worked and avoiding welfare and unemployment benefit payments. Participants received the largest benefit through wages and access to the labor market, with most participants transitioning into productive, open employment following program completion. The results from the model are robust; the benefit ratio remained above 1.0 even when higher discount rates were applied. In sum, our analysis identifies potential economic savings associated with supported employment programs that provide pathways for otherwise unemployed or under-employed autistic adults to enter the workforce.Lay abstractRelative to the size of the population, there are fewer autistic people than non-autistic people in the workforce. Employment programs that provide extra support to autistic people may help them to gain and keep jobs that are suited to their skills and expertise. In this study, we reviewed the DXC Dandelion Program. This is a supported autism employment program run in partnership with the Australian Government. The program provided jobs to autistic people who worked in information and communications technology roles, such as software testing and cyber security. In this study, we examined some of the benefits of the program for the autistic people who participated in it. We also examined the benefits of the program to the government. We found that there are many savings to government when autistic people are employed in jobs that are matched to their skills and abilities, compared to being unemployed or working in jobs that are below their level of education, training, or skills.
  Citation: Autism
  PubDate: 2022-12-02T05:42:52Z
  DOI: 10.1177/13623613221138643
Association of labor epidural analgesia exposure with long-term risk of
autism spectrum disorder in offspring: A meta-analysis of observational
studies
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  Authors: Kuo-Chuan Hung, Jen-Yin Chen, Chung-Hsi Hsing, Chih-Wei Hsu, Ping-Hsin Liu, Ying-Jen Chang, Jui-Yi Chen, Sheng-Fu Chiu, Cheuk-Kwan Sun
  Abstract: Autism, Ahead of Print.
  To investigate the association between labor epidural analgesia exposure and the risk of autism spectrum disorder in offspring, this meta-analysis reviewed relevant literature from Medline, Cochrane Library, Google Scholar, and EMBASE databases from inception to May 2022 to evaluate the overall adjusted risk of autism spectrum disorder in offspring (primary outcome) and adjusted risks of autism spectrum disorder focusing on sibling-matched data, children who were delivered vaginally, and duration of labor epidural analgesia exposure (secondary outcomes). Pooled results of seven eligible observational studies involving 4,021,406 children revealed slightly higher risks of autism spectrum disorder in children with labor epidural analgesia exposure than those without (hazard ratio = 1.11, 95% confidence interval: 1.06–1.16, I2 = 67%, seven studies, level of evidence: very low). Consistent findings were found in subgroup analysis focusing on sibling data (hazard ratio: 1.10, 95% confidence interval: 1.02–1.18, I2 = 0%, five studies) and children delivered vaginally (hazard ratio: 1.11, 95% confidence interval: 1.06–1.17, I2 = 64%, seven studies). The tendency of an increased risk of autism spectrum disorder in children exposed to labor epidural analgesia 8 h (two studies). Although our results demonstrated a slightly increased risk of autism spectrum disorder in offspring with previous labor epidural analgesia exposure, the small effect size and lack of cumulative dose–response effect precluded tangible evidence supporting the association.Lay abstractA previous meta-analysis has demonstrated a superior analgesic efficacy of epidural analgesia (e.g. labor epidural analgesia) in comparison with non-epidural approaches. The widely accepted safety of labor epidural analgesia also endorses its current popularity in obstetric practice. However, the results of a recent large-scale longitudinal study that demonstrated a significant increase in risk of autism spectrum disorder in offspring from mothers with labor epidural analgesia exposure have raised some concerns over the safety of its use. The current meta-analysis aimed at examining the strength of evidence regarding this issue based on updated clinical data. Through systematically reviewing seven eligible observational studies involving 4,021,406 children from electronic databases, our results showed a slight but statistically significant increase in risk of autism spectrum disorder in children with exposure to labor epidural analgesia compared with those without. The finding was consistent in subgroup analysis focusing on siblings and children delivered vaginally. Nevertheless, despite the tendency of an increased risk of autism spectrum disorder in children exposed to labor epidural analgesia 8 h (data from two studies). In conclusion, the level of evidence linking labor epidural analgesia to autism spectrum disorder development in offspring was very low based on the latest data because of the small effect size and the finding of a lack of cumulative dose–response effect in the current analysis. Further studies are warranted to provide an insight into this issue.
  Citation: Autism
  PubDate: 2022-11-30T01:07:18Z
  DOI: 10.1177/13623613221138690
Categorical perception of Mandarin lexical tones in language-delayed
autistic children
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  Authors: Yicheng Rong, Yi Weng, Fei Chen, Gang Peng
  Abstract: Autism, Ahead of Print.
  Enhanced pitch perception has been identified in autistic individuals, but it remains understudied whether such enhancement can be observed in the lexical tone perception of language-delayed autistic children. This study examined the categorical perception of Mandarin lexical tones in 23 language-delayed autistic children and two groups of non-autistic children, with one matched on chronological age (n = 23) and the other on developmental age in language ability (n = 23). The participants were required to identify and discriminate lexical tones. A wider identification boundary width and a lower between-category discrimination accuracy were found in autistic children than their chronological-age-matched non-autistic peers, but the autistic group exhibited seemingly comparable performance to the group of developmental-age-matched non-autistic children. While both non-autistic groups displayed a typical categorical perception pattern with enhanced sensitivity to between-category tone pairs relative to within-category ones, such a categorical perception pattern was not observed in the autistic group. These findings suggest among language-delayed autistic children with a developmental age around 4, categorical perception is still developing. Finally, we found categorical perception performance correlated with language ability, indicating autistic children’s language disability might be predictive of their poor categorical perception of speech sounds.Lay abstractSome theories suggested that autistic people have better pitch perception skills than non-autistic people. However, in a context where pitch patterns are used to differentiate word meanings (i.e. lexical tones), autistic people may encounter difficulties, especially those with less language experience. We tested this by asking language-delayed autistic children to identify and discriminate two Mandarin lexical tones (/yi/ with Tone 1, meaning ‘clothes’; /yi/ with Tone 2, meaning ‘aunt’; /yi/: the standard romanization of Mandarin Chinese). On average, these autistic children were 7.35 years old, but their developmental age in language ability was 4.20, lagging behind 7-year-old non-autistic children in terms of language ability. Autistic children’s performance in identifying and discriminating lexical tones was compared with two groups of non-autistic children: one group was matched with the autistic group on age, and the other was matched based on language ability. Autistic children performed differently from the non-autistic children matched on age, while autistic and non-autistic children matched on language ability exhibited seemingly similar performance. However, both the non-autistic groups have developed the perceptual ability to process lexical tones as different categories, but this ability was still developing in autistic children. Finally, we found autistic children who performed worse in identifying lexical tones had poorer language ability. The results suggest that language disability might have adverse influence on the development of skills of speech sound processing.
  Citation: Autism
  PubDate: 2022-11-24T05:34:56Z
  DOI: 10.1177/13623613221138687
Staring spells in children with autism spectrum disorder: A clinical
dilemma
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  Authors: Ajay Goenka, Laura D Fonseca, Sarah G Yu, Monica C George, Caroline Wong, Adrienne Stolfi, Gogi Kumar
  Abstract: Autism, Ahead of Print.
  To assess the role of clinical features in diagnosing seizures in children with autism spectrum disorder who present with staring spells. A 10-year retrospective chart analysis of autism spectrum disorder patients aged 3–14 years was performed at a tertiary care children’s hospital. Patient demographics, clinical presentation, and epileptic seizure versus non-epileptic spell diagnosis were assessed. Target episodes of staring spells were captured during a long-term electroencephalogram monitoring record. Multilevel likelihood ratios and a receiver operating characteristic curve were determined using 8 of the 11 clinical variables. Among the cohort of 140 patients with autism spectrum disorder, 16% were diagnosed with epileptic seizures with the most common seizure being atypical absence seizures (64%). Clinical semiology differed between those diagnosed with epileptic seizures versus those diagnosed with non-epileptic spells in the average duration of episodes (42 s vs 87 s), frequency of spells per week (6 vs 11.5 spells), increase in frequency of staring spells over time (100% vs 40%), and response to verbal stimulation (0% vs 100%), respectively. Multilevel likelihood ratios based on the receiver operating characteristic curves and clinical semiology features may be helpful in differentiating epileptic seizures from non-epileptic spells in children with autism spectrum disorder.Lay It is a common occurrence for children with autism spectrum disorder to be diagnosed with staring spells. Staring spells are defined as periods of time when children “space out” and are subcategorized as either “absence seizures” (brain activity resembling a seizure but with no physical seizure symptoms) or “non-epileptic spells” (inattentiveness or daydreaming). Due to the subtle characteristics of staring spells, they are usually diagnosed via long-term video electroencephalogram. The child is monitored for 3–5 days with an electroencephalogram which records brain waves. An electroencephalogram may be difficult to perform in children with autism spectrum disorder due to behavior, cognitive, or sensory concerns. Therefore, we wanted to investigate other clinical characteristics that may help us differentiate between epileptic seizures versus non-epileptic spells in children with autism spectrum disorder presenting with staring spells. We reviewed 140 charts retrospectively from the years of 2010–2021. We abstracted demographic and clinical information from the electronic medical record system and reviewed electroencephalogram videos to group the 140 children into epileptic seizure diagnosis group versus non-epileptic spell group. Of the 140 children in this study, 22 were diagnosed with epileptic seizures and the remaining were diagnosed with non-epileptic spells. We found that the two groups differed in certain clinical characteristics such as how long the staring spells lasted, how many staring spells the child had in 1 week, and whether they responded to verbal commands. We believe that clinical features may be helpful in differentiating epileptic seizures from non-epileptic spells in children with autism spectrum disorder.
  Citation: Autism
  PubDate: 2022-11-23T08:25:27Z
  DOI: 10.1177/13623613221137240
Autistic adults and adults with sub-clinical autistic traits differ from
non-autistic adults in social-pragmatic inferencing and narrative
discourse
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  Authors: Katja Dindar, Soile Loukusa, Eeva Leinonen, Leena Mäkinen, Laura Mämmelä, Marja-Leena Mattila, Hanna Ebeling, Tuula Hurtig
  Abstract: Autism, Ahead of Print.
  Since prior research has mostly focused on children, less is known about how autistic adults and adults with sub-clinical autistic traits interpret pragmatically complex social situations and the kind of narrative discourse they produce. 32 autistic young adults, 18 young adults with sub-clinical autistic traits and 34 non-autistic young adults participated this study. They were shown videos of social interactions which required complex pragmatic processing and were asked to freely narrate what they thought was occurring in each video. Their narratives were coded for aspects of social-pragmatic and narrative discourse. The results indicate that the autistic and sub-clinical groups differed from the comparison group in what they inferred as relevant video content. The narratives of the autistic group also differed from the comparison group in meaning, focus and emphasis on details. In addition, the comparison group produced more holistic narratives whereas the autistic and sub-clinical groups produced more atomistic narratives. Correlational findings indicated that perceptual reasoning has stronger associations with pragmatic inferencing in the autistic and sub-clinical groups than in the comparison group. This study suggests that autistic adults and adults with sub-clinical autistic traits differ from non-autistic adults in what they perceive to be relevant in their social world.Lay AbstractPrevious social-pragmatic and narrative research involving autistic individuals has mostly focused on children. Little is known about how autistic adults and adults who have autistic traits but do not have a diagnosis of an autism spectrum disorder (ASD) interpret complex social situations and tell narratives about these situations. We asked 32 autistic young adults, 18 adults with autistic traits but no ASD diagnosis, and 34 non-autistic young adults to watch socially complex situations and freely tell narratives about what they thought was occurring in each situation. These narratives were analysed for how the participants had interpreted the situations and for the type of narratives they produced. We found that the groups had both similarities and differences. Regarding the differences, we found that the autistic adults and adults with autistic traits interpreted the situations differently from the non-autistic adults. The autistic adults found different aspects of the situations relevant, had different foci and placed greater importance on details than the non-autistic adults. The autistic adults and adults with autistic traits also differed from the non-autistic adults by having more detail- and event-focused narratives whereas the non-autistic adults were more likely to base their narratives on their own broad interpretations of the situations. Perceptual processing styles appeared to play a bigger role in interpreting the situations for the autistic adults and adults with autistic traits than the non-autistic adults. Our findings suggest that autistic adults and adults with autistic traits focus on different aspects in their social world than non-autistic adults.
  Citation: Autism
  PubDate: 2022-11-23T08:23:28Z
  DOI: 10.1177/13623613221136003
Knowing and accepting oneself: Exploring possibilities of self-awareness
among working autistic young adults
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  Authors: Hanna Bertilsdotter Rosqvist, Lill Hultman, Johan Hallqvist
  Abstract: Autism, Ahead of Print.
  Autistic people have historically been described as incapable of developing a deeper sense of self-awareness, and autistic understandings of self-awareness have been largely disregarded. The aim of this study is to explore the way young autistic adults try to understand their functionality and who they are, or to develop their sense of self-awareness, in work and in private life contexts. In 12 qualitative interviews conducted with four autistic adults without learning difficulties, we identified a rich set of reflections on knowing and accepting oneself. The overarching theme of self-knowledge has three subthemes: learning from previous experiences, learning about oneself by securing the support of others, and understanding and accepting autistic functionality. The strategy of self-knowledge was used by these young adults to help them achieve functional lives in the work and private domains. Our results show that young autistic adults both actively explore and develop their self-awareness. We suggest that it is important for practitioners and employers working with autistic individuals to engage with their journeys of self-awareness as a vital part of understanding and supporting them.Lay abstractWhen researchers and professionals talk about autism, they commonly point out problems and risks with autism or being autistic. Several interventions are based on the idea of the problems and risks of autism. Another way of talking about autism is to point out autistic people’s strengths and strategies which they use to handle barriers and problems in their lives in order to live good lives on their own terms. In this article, the researchers explore how autistic young adults formulate their own difficulties, strengths and support needs in order to get right support from support people. To be able to formulate this, autistic people need to get to know oneself and one’s own way of functioning. Autistic own self-knowledge must be central when formal support people, such as social workers, formulate support and interventions aimed at helping autistic people, in order for the support/intervention to be helpful.
  Citation: Autism
  PubDate: 2022-11-21T01:32:18Z
  DOI: 10.1177/13623613221137428
Diversifying autism neuroimaging research: An arterial spin labeling
review
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  Authors: Laust V Knudsen, Abigail J Sheldrick, Manouchehr S Vafaee, Tanja Maria Michel
  Abstract: Autism, Ahead of Print.
  Cognition and brain homeostasis depends on cerebral blood flow to secure adequate oxygen and nutrient distribution to the brain tissue. Altered cerebral blood flow has previously been reported in individuals diagnosed with autism spectrum condition in comparison to non-autistics. This phenomenon might suggest cerebral blood flow as a potential biomarker for autism spectrum condition. Major technological advancement enables the non-invasive and quantitative measurement of cerebral blood flow via arterial spin labeling magnetic resonance imaging. However, most neuroimaging studies in autistic individuals exploit the indirect blood oxygen level dependent functional magnetic resonance imaging signal instead. Therefore, this review examines the use of arterial spin labeling to further investigate the neurobiology of the autism spectrum condition. Followed by a comparison of results from molecular imaging and arterial spin labeling studies and a discussion concerning the future direction and potential of arterial spin labeling in this context. We found that arterial spin labeling study results are consistent with those of molecular imaging, especially after considering the effect of age and sex. Arterial spin labeling has numerous application possibilities besides the quantification of cerebral blood flow, including assessment of functional connectivity and arterial transit time. Therefore, we encourage researchers to explore and consider the application of arterial spin labeling for future scientific studies in the quest to better understand the neurobiology of autism spectrum condition.Lay abstractBrain function and health depend on cerebral blood flow to secure the necessary delivery of oxygen and nutrients to the brain tissue. However, cerebral blood flow appears to be altered in autistic compared to non-autistic individuals, potentially suggesting this difference to be a cause and potential identification point of autism. Recent technological development enables precise and non-invasive measurement of cerebral blood flow via the magnetic resonance imaging method referred to as arterial spin labeling. However, most neuroimaging studies still prefer using the physiologically indirect measure derived from functional magnetic resonance imaging. Therefore, this review examines the use of arterial spin labeling to further investigate the neurobiology of autism. Furthermore, the review includes a comparison of results from molecular imaging and arterial spin labeling followed by a discussion concerning the future direction and potential of arterial spin labeling. We found that arterial spin labeling study results are consistent with those of molecular imaging, especially after considering the effect of age and sex. In addition, arterial spin labeling has numerous application possibilities besides the quantification of cerebral blood flow. Therefore, we encourage researchers to explore and consider the application of arterial spin labeling for future scientific studies in the quest to better understand the neurobiology of autism.
  Citation: Autism
  PubDate: 2022-11-21T01:28:58Z
  DOI: 10.1177/13623613221137230
Co-design of an NHS primary care health check for autistic adults
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  Authors: Helen Taylor, Barry Ingham, David Mason, Tracy Finch, Colin Wilson, Clare Scarlett, Sebastian Moss, Carole Buckley, Anna Urbanowicz, Dora Raymaker, Charlotte Seiboth, Rhianna Lees, Deborah Garland, Malcolm Osbourne, Nicholas Lennox, Sally-Ann Cooper, Christina Nicolaidis, Jeremy R Parr
  Abstract: Autism, Ahead of Print.
  Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people’s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person’s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.
  Citation: Autism
  PubDate: 2022-11-21T01:25:31Z
  DOI: 10.1177/13623613221132921
Autistic women’s experiences of self-compassion after receiving
their diagnosis in adulthood
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  Authors: Rosemarie B Wilson, Andrew R Thompson, Georgina Rowse, Richard Smith, Amber-Sophie Dugdale, Megan Freeth
  Abstract: Autism, Ahead of Print.
  Knowledge of autistic individuals’ experiences of self-compassion is very limited. This study investigated autistic women’s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women completed semi-structured interviews analysed using interpretative phenomenological analysis. Three super-ordinate themes were identified: ‘Disconnect between the autistic self and experience of societal expectations’ (the burden of conformity; autism is misunderstood; social challenges; mental health impact); ‘Unmasking: the process of self-understanding’ (autonomy and self-compassion; validation and grief) and ‘Impact on relationships’ (diagnosis disclosure dilemmas; connection and understanding). Frustration with society’s misconceptions of autism and unhelpful thinking styles were presented as barriers to self-compassion. Most participants reported that their diagnosis had led to the development of a greater sense of self-understanding, which facilitated self-compassion. Some participants suggested their own increased understanding of autism facilitated their compassion towards others. Findings from this study have clinical implications for increasing understanding about autistic women’s experiences of self-compassion and possibly ways to facilitate its development, to enhance well-being.Lay abstractKnowledge of autistic individuals’ experiences of self-compassion is very limited. This study investigated autistic women’s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women were interviewed about their experiences of receiving their diagnosis in adulthood and their experiences of self-compassion. Systematic analysis of the interview transcripts revealed common themes in the participants’ experiences. Participants reported that their autism diagnosis helped them to better understand themselves, particularly when reflecting on problematic past experiences. After receiving an autism diagnosis, participants described being able to relate to them with greater self-kindness compared to previous self-criticism; this included allowing themselves to assert their needs and engage in self-care activities. Participants spoke about having difficult social experiences, including feeling pressure to conform to expectations in society and often feeling misunderstood. The findings highlight the barriers autistic women face obtaining their diagnoses and demonstrate the need for autism training for professionals to support early identification. Findings from this study suggest that interventions aimed at developing self-compassion could support and enhance autistic women’s well-being.
  Citation: Autism
  PubDate: 2022-11-14T12:14:13Z
  DOI: 10.1177/13623613221136752
Exploring communicative competence in autistic children who are minimally
verbal: The Low Verbal Investigatory Survey for Autism (LVIS)
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  Authors: Adam Naples, Elena J Tenenbaum, Richard N Jones, Giulia Righi, Stephen J Sheinkopf, Inge-Marie Eigsti
  Abstract: Autism, Ahead of Print.
  Approximately 30% of autistic children are considered minimally verbal. The field lacks an efficient and reliable measure of communicative capacity among minimally verbal autistic children. Improved methods are needed to determine which children are at greatest risk for minimally verbal outcomes to better target interventions. Here, we present the Low Verbal Investigatory Survey (LVIS), a brief parent-report measure designed to assess communicative capacity among minimally verbal autistic children. The 36-item easy-to-complete LVIS was developed to capture the atypical language trajectories associated specifically with autism. We report pilot results from a sample of 147 children (1–8 years) whose caregivers completed the LVIS as part of other studies. Principal components analysis was used to assess dimensionality of the LVIS; composite scores were compared with existing measures of communicative capacity, all of which take significantly more time and training to administer and score. Scores on the LVIS were strongly correlated with existing gold-standard measures of communication. Presence of atypical vocalizations was determined to be particularly relevant for symptoms of autism as well as language and cognitive abilities. These findings provide initial validation of a tool designed to capture multiple dimensions of communicative capacity in children with minimal or low verbal skills.Lay abstractApproximately one in three autistic children is unable to communicate with language; this state is often described as minimally verbal. Despite the tremendous clinical implications, we cannot predict whether a minimally verbal child is simply delayed (but will eventually develop spoken language) or will continue to struggle with verbal language, and might therefore benefit from learning an alternative form of communication. This is important for clinicians to know, to be able to choose the most helpful interventions, such as alternative forms of communication. In addition, the field lacks a standard definition of “minimally verbal.” Even when we do agree on what the term means (e.g. fewer than 20 words), describing a child based on their lack of words does not tell us whether that child is communicating in other ways or how they are using those 20 words. To address these concerns, we developed the Low Verbal Investigatory Survey (LVIS), a one-page parent-report measure designed to help us characterize how minimally verbal autistic children are communicating. Parents of 147 children (aged 1–8 years) completed the LVIS. Here, we ask (1) whether the survey measures what it was designed to measure, that is, communicative ability in children without much spoken language, and (2) how the LVIS relates to cognitive and language ability, and symptoms of autism. Results suggest that this survey, which takes only 5 min to complete, is a good estimate of the child’s communication skills. Furthermore, LVIS survey scores are correlated with other measures of language and cognitive abilities as well as autism symptomatology. The LVIS has the potential to save time and money in both clinical and research efforts to assess communication skills in minimally verbal autistic children.
  Citation: Autism
  PubDate: 2022-11-14T12:12:53Z
  DOI: 10.1177/13623613221136657
Autism spectrum disorder among 16- to 30-month-old children in Bangladesh:
Observational cross-sectional study
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  Authors: Shaheen Akhter, Jannatara Shefa, Mohammad Abdul Quader, Khurshid Talukder, AHM Enayet Hussain, Gopen Kumar Kundu, Kanij Fatema, Sayeda Tabassum Alam, Kazi Ashraful Islam, Md Sayedur Rahman, Mohammad Mizanur Rahman, Ziaul Hasan, Muzharul Mannan
  Abstract: Autism, Ahead of Print.
  Autism spectrum disorder is a developmental disorder that includes deficits in social communication and interaction, and restricted and repetitive behaviours, interests, or activities. This survey was done to assess autism spectrum disorder prevalence in 16- to 30-month-old children at an urban–rural distribution and determine the association of socioeconomic and demographic conditions. An observational cross-sectional study was conducted in 30 districts of Bangladesh. Three-stage cluster sampling was used with ‘Red Flag’, Modified Checklist for Toddlers and Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, respectively. Data editing and analysis were done using CSPro 6 and SPSS 23. The survey included 37,982 households (71% rural, 29% urban) with 38,440 children. ‘Red Flag’ was positive in 209/10,000 children. Modified Checklist for Toddlers was positive in 149/10,000 children. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition–positive autism spectrum disorder prevalence was 17/10,000 young children (boys 24/10,000, girls 9.8/10,000). Prevalence was higher in urban than rural (25/10,000 and 14/10,000 respectively). It was 77/10,000 in mothers aged 35–39 years and 23/10,000 in children of fathers aged 40 years. For families within the lowest wealth quintile, the autism spectrum disorder prevalence was 15/10,000. Autism spectrum disorder at very young ages in Bangladesh is still low. It was higher in urban areas, with the advanced age of parents, especially mothers, and in families with higher wealth quintiles.Lay abstractA nationwide survey was done in Bangladesh to assess autism spectrum disorder prevalence in 16- to 30-month-old children at urban–rural distribution and to determine the association with socioeconomic and demographic conditions. A three-stage cluster sampling method was used where districts from all divisions were selected in the first stage, census enumeration areas as blocks of households were selected in the second stage and households (within the blocks) were selected in the third stage. Thereby, it included 38,440 children from 37,982 households (71% rural, 29% urban) aged 16–30 months from 30 districts of eight divisions of Bangladesh. Screening was done with a ‘Red Flag’ tool and Modified Checklist for Toddlers and a final diagnosis using Diagnostic and Statistical Manual of Mental Disorders, 5th Edition for autism spectrum disorder. Autism spectrum disorder prevalence was 17 per 10,000 young children – in other words, one in 589 young children. Boys were found at higher risk of autism (one in 423 boys; one in 1026 girls). Prevalence of autism spectrum disorder was higher in urban environments than in rural ones – 25/10,000 and 14/10,000, respectively. More autism spectrum disorder children were found in advanced age groups of parents, especially mothers, and in households with a higher wealth quintile. This survey is significant as it covers both urban and rural areas and specifically targets very young children. The involvement of the Bangladesh Bureau of Statistics, as well as support from the entire healthcare system infrastructure, makes this survey more representative on a national level. Its results will form a database to support the development of an effective early intervention programme in Bangladesh. We hope it will prove useful for researchers, clinicians and frontline healthcare workers, and inform the decisions of policymakers and funders in Bangladesh.
  Citation: Autism
  PubDate: 2022-11-14T11:22:49Z
  DOI: 10.1177/13623613221135297
Looking through rainbow-rimmed glasses: Taking neurodiversity perspective
is related to subjective well-being of autistic adults
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  Authors: Kinga Ferenc, Mateusz Płatos, Katarzyna Byrka, Magdalena Ewa Król
  Abstract: Autism, Ahead of Print.
  Finding new ways of supporting the well-being of autistic adults is an essential goal for research and practice. We tested the predictive value of attitudes towards autism (as neurodiversity or as a disorder) and identification with other autistic people, on the psychological distress and self-esteem of autistic adults (n = 109). Adopting a neurodiversity attitude not only predicted higher self-esteem but also served as a protective factor against the negative impact of identification with other autistic people on psychological distress. These findings show that clinicians should be sensitive to the way autistic people understand autism and the extent to which they identify with the autism community, as these factors relate to their well-being.Lay abstractAutistic adults experience a high level of distress. Finding new ways to support their well-being is an important goal for researchers and clinicians. We assessed the way autistic adults view their autism, as a disorder or as a type of mind (neurodiversity), and the level they integrate with other autistic people, and we checked how those factors contribute to their well-being. People who see autism rather as a type of mind than as a disorder had higher self-esteem. People who view themselves as more similar to other autistic people felt more stressed, but this result was not accurate for people who view autism as a type of mind. Clinicians should be sensitive to the way autistic people understand autism and to what extent they identify with the autism community, because it may relate to their well-being.
  Citation: Autism
  PubDate: 2022-11-14T08:32:39Z
  DOI: 10.1177/13623613221135818
Supporting caregivers of children with developmental disabilities:
Findings from a brief caregiver well-being programme in South Africa
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  Authors: Liezl Schlebusch, Nola Chambers, David Rosenstein, Petro Erasmus, Petrus J de Vries
  Abstract: Autism, Ahead of Print.
  Caring for children with developmental delays or disabilities places significant stress on caregivers, which is often exacerbated in low-resource settings. The World Health Organization developed a caregiver skills training for families of children with developmental delays or disabilities, which includes a three-session caregiver well-being module based on Acceptance and Commitment Therapy, that aims to help caregivers build psychological flexibility (i.e. the ability to focus on the present moment, make space for difficult thoughts and emotions and commit to value-driven actions that enrich their lives). We investigated whether this brief caregiver well-being programme was feasible, acceptable and contributed to positive outcomes for caregivers in a rural South African town. We adapted the intervention to the local context using a participatory approach. The ‘Well-Beans for Caregivers’ adaptation of the World Health Organization Caregiver Skills Training Caregiver Wellbeing module was then delivered by trained facilitators to a group of 10 caregivers in three weekly, 2-h sessions. Most caregivers were single and unemployed. Feedback from the facilitators, caregivers and trainee observers was obtained before, during and after the programme. Results suggested that this brief programme shows promise as a feasible and acceptable intervention, which may lead to improved caregiver well-being and mental health in communities in South Africa.Lay abstractYoung children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers’ mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers’ capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers’ well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant ‘Well Beans for Caregivers’ was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers’ well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers’ capacity to care for their children.
  Citation: Autism
  PubDate: 2022-11-10T06:12:48Z
  DOI: 10.1177/13623613221133182
Perspective: The role of diversity advisory boards in autism research
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  Authors: Ed-Dee G Williams, Matthew J Smith, Brian Boyd
  Abstract: Autism, Ahead of Print.
  In this perspective, we argue that the regular use of diversity advisory boards in autism research will improve the inclusivity and participation of marginalized groups in autism research and intervention development. We define a diversity advisory board as a representative group of community members, scholars, policymakers, and area experts that specifically discuss and examine research and interventions for accurate representation and consideration of underrepresented and marginalized identities such as racial, gender, sexual minorities, and dis/abilities who are often excluded from the research process. We present three arguments for forming and integrating diversity advisory boards in autism research and intervention development. First, diversity advisory boards would encourage scholars and interventionists to be intentional in considering how their intervention will work for culturally, racially, gendered, and dis/ability diverse groups. Second, diversity advisory boards will lead to increased diverse samples of autistic participants if members of the board are incentivized to support recruitment efforts from their local communities and networks. Finally, the regular use of diversity advisory boards will improve the research-to-practice gap by including a wider range of community members in the early development and implementation of autism interventions. Recommended actions researchers could take to select, maintain, and meaningfully engage a diversity advisory board are included in this perspective.Lay abstractThis article argues that using groups of individuals that specifically focus on addressing issues with diversity in autism research and autism intervention development are key in ensuring that a greater amount of racial, ethnic, and gender diverse autistic individuals are included in the research and that the research is addressing the needs of these individuals and groups. We call these groups a diversity advisory board. A diversity advisory board will help improve diversity in autism research and intervention development by making sure that autism researchers (1) are intentional about addressing issues of diversity in their research and (2) are able to recruit a greater number of autistic individuals with diverse identities, and (3) by giving greater consideration to the context of diverse autistic individuals which will help autism-focused interventions work better in community settings. We give a short description of these arguments and ideas for how to form and use a diversity advisory board.
  Citation: Autism
  PubDate: 2022-11-07T08:13:19Z
  DOI: 10.1177/13623613221133633
Digital tools for direct assessment of autism risk during early childhood:
A systematic review
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  Authors: Debarati Mukherjee, Supriya Bhavnani, Georgia Lockwood Estrin, Vaisnavi Rao, Jayashree Dasgupta, Hiba Irfan, Bhismadev Chakrabarti, Vikram Patel, Matthew K Belmonte
  Abstract: Autism, Ahead of Print.
  Current challenges in early identification of autism spectrum disorder lead to significant delays in starting interventions, thereby compromising outcomes. Digital tools can potentially address this barrier as they are accessible, can measure autism-relevant phenotypes and can be administered in children’s natural environments by non-specialists. The purpose of this systematic review is to identify and characterise potentially scalable digital tools for direct assessment of autism spectrum disorder risk in early childhood. In total, 51,953 titles, 6884 abstracts and 567 full-text articles from four databases were screened using predefined criteria. Of these, 38 met inclusion criteria. Tasks are presented on both portable and non-portable technologies, typically by researchers in laboratory or clinic settings. Gamified tasks, virtual-reality platforms and automated analysis of video or audio recordings of children’s behaviours and speech are used to assess autism spectrum disorder risk. Tasks tapping social communication/interaction and motor domains most reliably discriminate between autism spectrum disorder and typically developing groups. Digital tools employing objective data collection and analysis methods hold immense potential for early identification of autism spectrum disorder risk. Next steps should be to further validate these tools, evaluate their generalisability outside laboratory or clinic settings, and standardise derived measures across tasks. Furthermore, stakeholders from underserved communities should be involved in the research and development process.Lay abstractThe challenge of finding autistic children, and finding them early enough to make a difference for them and their families, becomes all the greater in parts of the world where human and material resources are in short supply. Poverty of resources delays interventions, translating into a poverty of outcomes. Digital tools carry potential to lessen this delay because they can be administered by non-specialists in children’s homes, schools or other everyday environments, they can measure a wide range of autistic behaviours objectively and they can automate analysis without requiring an expert in computers or statistics. This literature review aimed to identify and describe digital tools for screening children who may be at risk for autism. These tools are predominantly at the ‘proof-of-concept’ stage. Both portable (laptops, mobile phones, smart toys) and fixed (desktop computers, virtual-reality platforms) technologies are used to present computerised games, or to record children’s behaviours or speech. Computerised analysis of children’s interactions with these technologies differentiates children with and without autism, with promising results. Tasks assessing social responses and hand and body movements are the most reliable in distinguishing autistic from typically developing children. Such digital tools hold immense potential for early identification of autism spectrum disorder risk at a large scale. Next steps should be to further validate these tools and to evaluate their applicability in a variety of settings. Crucially, stakeholders from underserved communities globally must be involved in this research, lest it fail to capture the issues that these stakeholders are facing.
  Citation: Autism
  PubDate: 2022-11-07T08:10:19Z
  DOI: 10.1177/13623613221133176
The indirect effect of self-compassion in the association between autistic
traits and anxiety/depression: A cross-sectional study in autistic and
non-autistic adults
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  Authors: John Galvin, Gareth Richards
  Abstract: Autism, Ahead of Print.
  This study followed a pre-registered analysis plan with the aim to investigate whether autistic traits and self-compassion are correlated in autistic adults, and to test an indirect effect of autistic traits on anxiety/depression via self-compassion. We present the findings of an online survey of 456 participants (n = 228 autistic adults, n = 228 non-autistic adults) who completed the Autism Spectrum Quotient (AQ), the Self-Compassion Scale (SCS) and the Hospital Anxiety and Depression Scale (HADS). Lower self-compassion was reported by autistic participants compared to non-autistic participants, and a negative correlation was found between autistic traits and self-compassion in both groups. Furthermore, an indirect association between autistic traits and anxiety/depression via self-compassion was observed in both samples. Considering that many autistic people experience co-occurring anxiety and depression, and that self-compassion is a skill that can be cultivated with practice, the findings of this study suggest that self-compassion may be a modifiable factor that could improve the mental health of this population.Lay abstractPrevious research on non-autistic adults suggests self-compassion may serve to reduce mental health problems and promote psychological well-being. Correlations between autistic traits and self-compassion have been observed in non-clinical populations. In this study, we were interested in extending previous research by exploring relationships between autistic traits, self-compassion and anxiety/depression in autistic adults without intellectual disability. The findings revealed that on average autistic people reported lower self-compassion than non-autistic people. Once we accounted for levels of self-compassion in our statistical model, this resulted in a complete loss of statistical significance in the relationships between autistic traits and anxiety/depression. Self-compassion may be a useful target for clinical intervention in autistic adults with co-occurring mental health difficulties.
  Citation: Autism
  PubDate: 2022-11-07T07:30:25Z
  DOI: 10.1177/13623613221132109
Autism-friendly public bus transport: A personal experience–based
perspective
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  Authors: Hélène Dirix, Veerle Ross, Kris Brijs, Laura Bertels, Wael Alhajyaseen, Tom Brijs, Geert Wets, Annemie Spooren
  Abstract: Autism, Ahead of Print.
  Community participation and the formation of social networks are crucial for a qualitative life. To this end, transportation plays an essential role. Many autistic people rely on public transportation for their mobility needs. However, research shows that it is not always easy for them to use it. The issues they face when using public bus transport have not yet been thoroughly studied. The current case study in Flanders aimed to give autistic people the opportunity to express the issues they face while using public bus transportation. A qualitative hermeneutic phenomenological study was carried out. Semistructured interviews were conducted with 17 autistic individuals. The interviews were analyzed based on the interpretative phenomenological analysis method. Three main themes emerged: creating predictability, limiting stimuli, and open and accessible communication. In addition, various coping strategies were described, such as the use of noise-canceling headphones. The results of this study may lead to a more autism-friendly public transportation environment.Lay AbstractTransportation plays an essential role in daily life, allowing people to participate in the community and form social relationships. Many autistic people rely on public transportation to meet their mobility needs. However, research shows that it is not always easy for them to use it. The exact issues autistic individuals face when traveling with public transportation and how public transportation can be made more autism-friendly have yet to be researched. The current study allowed autistic individuals to express themselves regarding issues they face while traveling by public bus transportation, to raise awareness for making public transportation more autism-friendly. We interviewed 17 autistic individuals about their experiences riding the bus. Three main themes emerged from the results: creating predictability, limiting stimuli, and open and accessible communication. If transport companies take initiatives related to these themes, autistic people traveling by bus can have a more pleasant experience. Participants also described coping strategies for stressful or uncomfortable situations while using public bus transportation, such as using noise-cancelling headphones or digital applications for real-time route tracking, etc. These findings may lead to a more autism-friendly public transportation.
  Citation: Autism
  PubDate: 2022-11-07T07:27:07Z
  DOI: 10.1177/13623613221132106
Socioeconomic factors and autism among 16- to 30-month-old children:
Evidence from a national survey of China
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  Authors: Muqing Cao, Li Li, Hein Raat, Amy Van Grieken, Xin Wang, Lizi Lin, Qiang Chen, Jin Jing
  Abstract: Autism, Ahead of Print.
  We examined the association of socioeconomic status with the diagnosis of autism during 16–30 months of age. Using data from a national survey in China, we included 6049 children (55.6% male) in the final analysis, among which 71 of them were clinically diagnosed with autism. Adjusted for covariates, the odds ratios for having the diagnosis of autism (2.46, 95% confidence interval: [1.32, 4.59]) among children whose mother’s level is “junior middle school or below” were significantly higher than children whose mother’s level is “college or above.” Among children of lower educated mothers, there is a higher risk of being diagnosed with autism at a young age. We recommend more support for families with a low socioeconomic status to early detect, diagnose, and manage autism.Lay abstractDoes being born in a family of high socioeconomic status mean a higher risk of being diagnosed with autism' The evidence from the Asian area is lacking. This research was conducted among 6049 toddlers who went through an evaluation–diagnose procedure of autism and whose parents were surveyed during the national survey of China, 2016–2017. Parents reported their education levels, occupations, family income, and ethnic background. We recruited the toddlers and parents from kindergartens, communities, and hospitals in five geographically representative areas of China. On average, these toddlers were 23 months of age. We found toddlers whose mothers had less than 9 years of education (junior middle school or below) had 2.46 times the chance to get a diagnosis of autism, compared with toddlers whose mothers had more than 15 years of education (college or above). We also found that 1.17 toddlers could be diagnosed with autism in each 100 Chinese toddlers. These findings have important implications for providing support to families that have low socioeconomic status, especially families with a mother who did not complete 9 years of education. Early detection programs focused on children from low socioeconomic backgrounds should be promoted.
  Citation: Autism
  PubDate: 2022-11-04T08:51:17Z
  DOI: 10.1177/13623613221132743
Autism voices: Perspectives of the needs, challenges, and hopes for the
future of autistic youth
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  Authors: Rackeb Tesfaye, Valerie Courchesne, Pat Mirenda, Wendy Mitchell, David Nicholas, Ilina Singh, Lonnie Zwaigenbaum, Mayada Elsabbagh
  Abstract: Autism, Ahead of Print.
  The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how these insights shared by autistic youth can facilitate active involvement in their communities, promote well-being, and promote optimal transition into adulthood. Autism Voices demonstrates that partnering with multiple stakeholders and the use of inclusive methodologies are pivotal steps toward capturing the voices of all autistic youth.Lay abstractCurrently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11–18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.
  Citation: Autism
  PubDate: 2022-11-04T05:56:34Z
  DOI: 10.1177/13623613221132108
Thinking, fast and slow on the autism spectrum
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  Authors: Mark Brosnan, Chris Ashwin
  Abstract: Autism, Ahead of Print.
  The Dual Process Theory of Autism proposes that autistic individuals demonstrate greater deliberative (slower) processing alongside reduced (faster) intuitive processing. This study manipulated the reasoning time available to investigate the extent to which deliberative and intuitive processing are sensitive to time context in autism. A total of 74 young autistic people and 132 control participants completed the Cognitive Reflection Test to measure intuition and deliberation, with responses being either speeded (fast condition) or delayed (slow condition). The autistic group produced more deliberative and less intuitive responses than controls overall. Both groups showed more intuitive responses in the fast condition and more deliberative responses in the slow condition, demonstrating the reasoning style in autism is sensitive to context.Lay abstractWhat is already known about the topicDaniel Kahneman wrote a highly influential book titled ‘thinking, fast and slow’. He proposes that people usually think in a rapid, automatic, intuitive style. When people realise their intuitive thinking may be wrong, a slower, effortful, deliberative style of thinking takes over. It has recently been proposed that thinking in autistic individuals can be characterised as usually thinking in the deliberative style (rather than the intuitive style that non-autistic people usually think in).What this paper addsAs intuitive thinking is fast and deliberative thinking is slow, this research manipulated the time available to complete a series of reasoning questions. These questions have been developed to have intuitive answers (which are incorrect) and deliberative answers (which are correct). For the first time, a fast time manipulation (you must answer quickly) and slow (you must think about your answer before responding) was undertaken with autistic individuals. Autistic participants did produce more deliberative answers than the non-autistic participants. However, both groups produced comparably more intuitive answers and less deliberative answers in the fast condition. This shows that while autistic people tend not to use their intuition, autistic people can be encouraged to use their intuition.Implications for practice, research or policyUsing rapid intuition can be useful in fast-changing contexts, such as some social situations. Future research can explore how to support autistic individuals to use their intuition when the need arises. In addition, the propensity for deliberation resulting in unbiased, correct responses reflects a strengths-based account of autism. This requires more mental effort and is less susceptible to bias and errors. This is called ‘Dual Process Theory’.
  Citation: Autism
  PubDate: 2022-11-03T07:30:16Z
  DOI: 10.1177/13623613221132437
A qualitative exploration of autistic mothers’ experiences I:
Pregnancy experiences
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  Authors: Sarah Hampton, Joyce Man, Carrie Allison, Ezra Aydin, Simon Baron-Cohen, Rosemary Holt
  Abstract: Autism, Ahead of Print.
  Pregnancy may pose a number of physical and healthcare-related challenges for autistic people, who experience differences in sensory processing and can face barriers to accessing healthcare. However, little research has explored autistic pregnancy experiences. Semi-structured interviews were conducted with 24 autistic and 21 non-autistic women during the third trimester of pregnancy. Thematic analysis revealed that the autistic group experienced heightened sensory and physical symptoms during pregnancy compared with the non-autistic group. Autistic participants were sometimes reluctant to disclose their diagnosis to healthcare professionals and felt that professionals lacked autism knowledge. While both groups appreciated clear information about their care, autistic participants further highlighted the need for detailed information and being given time to process verbal information. The autistic group also highlighted the need for sensory adjustments in healthcare settings. The findings indicate ways in which prenatal healthcare can be improved for autistic people, including sensory and communication adjustments. There is a need for greater autism-related training for prenatal healthcare professionals to ensure that autistic people receive appropriate support.Lay abstractLittle is known about how autistic people experience pregnancy. We interviewed 24 autistic and 21 non-autistic women during pregnancy to find out about their experiences. Autistic participants had more physical difficulties, such as nausea and pain, during pregnancy than non-autistic participants. They also sometimes felt that healthcare professionals, such as midwives, did not have a good understanding of autism and they did not always feel comfortable telling professionals about their autism diagnosis. Autistic participants told us that they needed professionals to communicate with them clearly and to make changes during appointments such as dimming lights. This research shows that autistic people would benefit from changes to pregnancy appointments and that more training about autism would help maternity care professionals to support autistic people during pregnancy.
  Citation: Autism
  PubDate: 2022-11-03T07:26:39Z
  DOI: 10.1177/13623613221132435
“Giving the patients less work”: A thematic analysis of telehealth use
and recommendations to improve usability for autistic adults
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  Authors: Daniel Gilmore, Lauren Harris, Christopher Hanks, Daniel Coury, Susan Moffatt-Bruce, Jennifer H Garvin, Brittany N Hand
  Abstract: Autism, Ahead of Print.
  Virtual visits are a telehealth service where patients and providers communicate in real-time using audio and/or video technology. Setting up a virtual visit is complex and may pose challenges for some autistic adults. We conducted semi-structured interviews with autistic adults (n = 7), family members of autistic adults (n = 12), and clinic personnel (n = 6) from one US-based clinic and used thematic analysis to identify factors affecting usability of virtual visits. We found virtual visit preparation involves multiple contacts between clinic personnel and patients or family members via a variety of channels and usability was affected by technology considerations, logistical considerations, and expectations for visits. Participants said technological experience and using the patient portal enhanced usability, but technological issues could increase anxiety. Clinic personnel reported time constraints created logistical barriers to virtual visits; streamlining the process before the visit via the patient portal may improve the usability of virtual visits for autistic adults, family members, and clinic personnel. Participants also reported unclear expectations for virtual visits reduced usability and recommended reminders, instructional videos, and estimated wait-times to clarify expectations. While our findings are based on a single clinic, they may help inform usability improvement efforts in other clinics offering virtual visits for autistic adults.Lay abstractReal-time telehealth visits, called “virtual visits,” are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples’ experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members.
  Citation: Autism
  PubDate: 2022-11-03T07:23:39Z
  DOI: 10.1177/13623613221132422
A systematic review examining caregivers’ of color experiences with the
diagnostic process of autism spectrum disorder
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  Authors: Allison P Fisher, James D Lynch, Farrah M Jacquez, Monica J Mitchell, Kelly I Kamimura-Nishimura, Shari L Wade
  Abstract: Autism, Ahead of Print.
  There are racial/ethnic disparities in the diagnosis of autism spectrum disorder, including delayed diagnosis, discrimination, and a lack of culturally responsive care. The perspectives of caregivers of color are critical in improving delivery of equitable care. We systematically reviewed articles pertaining to experiences with the diagnostic process among caregivers of color. We entered key terms into five databases to identify literature from 2000 to 2021. Fifteen qualitative studies met inclusion criteria, representing 253 caregivers. We used inductive methods to examine themes across racial and ethnic groups and assessed the quality of included studies. Families of color identified multiple factors that negatively affected the diagnostic process. Systems-level factors included long wait lists and financial concerns. Provider-level factors included minimization of caregiver concerns, a “wait and see” approach, biases, and lack of knowledge. Caregivers also described individual (e.g. knowledge) and family factors (e.g. stigma) that delayed diagnosis and complicated the diagnostic process. Communication barriers were commonly reported, which impeded understanding of autism spectrum disorder. Some families described providers, other individuals, community networks, and self-advocacy as facilitators. Interventions targeting systems- (e.g. Medicaid expansion) and provider-level (e.g. increase training in autism spectrum disorder) factors are needed to increase equity in the autism spectrum disorder diagnostic process.Lay abstractChildren of color are diagnosed with autism later than White children. Caregivers of color are also more likely than White caregivers to report that their child’s healthcare providers do not treat them as a partner, spend enough time with them, or respect their culture and values. We wanted to better understand the experiences of caregivers of color with the diagnostic process of autism spectrum disorder, from the time they discuss developmental concerns with their child’s primary care provider to when the diagnosis is shared with them. We systematically reviewed the literature and found 15 articles that explored the experiences of caregivers of color. Caregivers of color described that they faced large-scale barriers, such as the cost of appointments, transportation, and long wait lists. They also reported negative experiences with providers, including providers not taking their concerns seriously, making assumptions about caregivers, and delaying referrals for an evaluation. Caregivers stated that their own lack of knowledge of autism spectrum disorder, stigma, their family’s thoughts and opinions, and cultural differences between providers and caregivers served as barriers during the diagnostic process. Communication challenges were discussed and included use of medical and technical jargon, a lack of follow-up, language barriers, and difficulty obtaining high-quality interpreters. Some families described providers, other individuals, community networks, and self-advocacy as helpful during the diagnostic process. Large-scale changes are needed, such as increases in the number of providers who are trained in diagnosing Autism. Provider-level changes (e.g. implicit bias training) are also important for improving caregivers’ experiences.
  Citation: Autism
  PubDate: 2022-11-02T08:09:06Z
  DOI: 10.1177/13623613221128171
A preliminary exploration of different coping strategies used by Korean
immigrant parents of autistic children in high versus low family quality
of life ratings
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  Authors: Vanessa C. Fong, Jennifer Shim, Andy Yoon, Bo Sang Lee, Grace Iarocci
  Abstract: Autism, Ahead of Print.
  The experiences of coping in parents of autistic children have been extensively studied in the literature. While this research has identified both effective and ineffective coping strategies used by caregivers, no studies to date have examined how coping strategies used by parents might be linked to family quality of life outcomes. Furthermore, few studies exist examining both coping strategies and family quality of life in culturally and linguistically diverse populations. Thus, this study aimed to address both limitations. A total of 12 Korean immigrant parents of autistic children, 6 representing the high family quality of life group and 6 representing the low family quality of life group, shared their experiences related to coping and managing stress. Responses fell under three broad categories (problem-focused, emotion-focused, and adjustment-focused) with differences observed when comparing the high versus low family quality of life groups. A better understanding of the link between coping strategies and family quality of life outcomes may help identify effective and culturally sensitive supports for caregivers and families to improve their quality of life and well-being.Lay abstractThe experiences of coping in parents of autistic children have been extensively studied in the literature. While this research has identified both effective and ineffective coping strategies used by caregivers, no studies to date have examined how coping strategies used by parents might be linked to family quality of life outcomes. Furthermore, few studies exist examining both coping strategies and family quality of life in culturally and linguistically diverse populations. Thus, this study aimed to address both limitations. A total of 12 Korean immigrant parents of autistic children, 6 representing the high family quality of life group and 6 representing the low family quality of life group, shared their experiences related to coping and managing stress. Responses fell under three broad categories (problem-focused, emotion-focused, and adjustment-focused) with differences observed when comparing the high versus low family quality of life groups. A better understanding of the link between coping strategies and family quality of life outcomes may help identify effective and culturally sensitive supports for caregivers and families to improve their quality of life and well-being.
  Citation: Autism
  PubDate: 2022-11-01T07:23:11Z
  DOI: 10.1177/13623613221133961
Overcoming tensions between family-centered care and fidelity within Early
Intervention implementation research
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  Authors: Katherine Pickard, Allison Wainer, Sarabeth Broder-Fingert, R. Christopher Sheldrick, Aubyn C. Stahmer
  Abstract: Autism, Ahead of Print.
  The Part C Early Intervention system has been a focus of translational efforts in the autism field, as it is an entry point to services during a critical window of early development. Although Early Intervention systems are perceived as a promising setting in which to implement evidence-based practices for autism, implementation efforts seldom account for the unique service delivery model of Early Intervention systems, which emphasize family-centered care. The principles of family-centered care may at times pose tradeoffs to the implementation of manualized evidence-based practices and, thus, are pertinent to consider within implementation research being conducted within these systems. This commentary highlights family-centered care as an important factor of service delivery in Early Intervention systems that deserve greater attention. We lay out how family-centered care provides a framework for evaluating evidence-based practice adaptation in Early Intervention systems, how it may impact the adoption and implementation of evidence-based practices, and directions for future research to evaluate the impact of family-centered care alongside evidence-based practice delivery. Measuring family-centered care as part of research within Early Intervention systems may shift the autism field to a more balanced view of fidelity as both delivering core evidence-based practice components in a manner that closely align with fundamental tenants of Early Intervention systems.Lay AbstractEarly Intervention systems provide therapeutic services to families of young children birth to 3 years with developmental delays and are considered a natural access point to services for young children and their families. Research studies in the autism field have been interested in training providers to deliver evidence-based practices in Early Intervention systems to increase access to services for young children with an increased likelihood of being autistic. However, research has often overlooked that Early Intervention systems prioritize family-centered care, an approach to working with families that honors and respects their values and choices and that provides supports to strengthen family functioning. This commentary points out that family-centered care deserves greater attention in research being done in Early Intervention systems. We describe how family-centered care may shape how interventions are delivered, and discuss directions for future research to evaluate the impact of family-centered care alongside intervention delivery.
  Citation: Autism
  PubDate: 2022-11-01T07:20:30Z
  DOI: 10.1177/13623613221133641
Portrayals of autism in the British press: A corpus-based study
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  Authors: Themis Karaminis, Costas Gabrielatos, Ursula Maden-Weinberger, Geoffrey Beattie
  Abstract: Autism, Ahead of Print.
  Press representations of autism and autistic people both reflect and help shape public attitudes towards autism and neurodiversity and may establish critical barriers to social integration for autistic individuals. This study examined such representations in UK newspapers in the period 2011–2020 using a corpus-based approach. It also considered how press representations changed over time and differed with regard to reporting style (tabloids vs broadsheets) and political orientation (left- vs right-leaning). We created the Autism UK Press Corpus, which included all documents (~24K) referring to autism in 10 national newspapers. We used document counts (normalised by newspaper size) to assess the ‘newsworthiness’ of autism. We also employed a synergy of corpus-based and critical-discourse-analysis methodologies to study lexicogrammatical patterns and uncover explicit and implicit attitudes towards autism. Our results showed that the coverage of autism increased slightly over time, especially in broadsheets and left-leaning newspapers. Newspapers emphasised adversities associated with autism, often used negative language, and tended to focus on boys. These representations shifted gradually towards more difference-based descriptions and included more diverse age/gender groups, especially in broadsheets and left-leaning newspapers. We discuss the broad implications of these findings for the autism community and those interested in a more inclusive society.Lay abstractAny thriving society must recognise, accept and celebrate all of its diverse talent. But how accepting is British society towards autism and autistic people' This research addressed this question through the lens of the press since the press both reflects and helps shape public attitudes towards various social categories. We used specialised ‘corpus-based’ methods to carry out a large-scale study, which examined all articles referring to autism or autistic people in 10 national British newspapers in the period 2011–2020. We first investigated how often newspapers referred to autism. We found that the coverage of autism increased slightly over the years, suggesting that autism was becoming an increasingly newsworthy topic. Furthermore, the rise in autism coverage differed considerably between individual newspapers: it was more pronounced in the broadsheets than tabloids, and in left-leaning than right-leaning newspapers. But what was the focus of these articles' We found that newspapers emphasised the adversities associated with autism and portrayed autism with a lot of negative language. Newspapers also tended to focus on autistic children, and particularly on boys. There were some signs of change in more recent years, with some newspapers now representing autism as a difference and, in addition, referring to more diverse groups of autistic people. However, these changes tended to be confined to broadsheets and left-leaning newspapers. Our findings suggest that representations of autism in the contemporary British press are skewed towards stereotypically negative views, which may well hinder the acceptance of autism and the fostering of a more inclusive society.
  Citation: Autism
  PubDate: 2022-11-01T07:14:50Z
  DOI: 10.1177/13623613221131752
Using implementation science frameworks to explore barriers and
facilitators for parents’ use of therapeutic strategies following a
parent-mediated autism intervention
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  Authors: Sophie Carruthers, Natasha Mleczko, Stephanie Page, Shalini Ahuja, Ceri Ellis, Patricia Howlin, Kathy Leadbitter, Lauren Taylor, Vicky Slonims, Tony Charman
  Abstract: Autism, Ahead of Print.
  One core component of the Paediatric Autism Communication Therapy–Generalised involves supporting parents to change their interaction and communication style with their child. This behaviour change has been found to affect child outcomes. Implementation science methodologies offer a range of opportunities to investigate how interventions are delivered in practice; however, few autism intervention studies have used such designs to explore the behaviour change of parents. We interviewed 27 parents and explored their use of intervention strategies after the Paediatric Autism Communication Therapy–Generalised trial. We employed the Theoretical Domains Framework and Consolidated Framework for Implementation Research to systematically explore a range of barriers and facilitators experienced by the parents associated with parents’ characteristics, their context and features of the intervention. Our analysis revealed barriers and facilitators across three themes: Motivating Factors, which was further subdivided into Compatibility and Buy-In and Alignment of Goals and Outcomes; Opportunity and Support; Parent Characteristics. Almost all parents reported continued use of the Paediatric Autism Communication Therapy–Generalised strategies. Facilitators (e.g. parental confidence in using the strategies) and barriers (e.g. child’s behaviour) were identified. Consideration of these factors can inform identification of implementation strategies to test in future studies of Paediatric Autism Communication Therapy–Generalised and other parent-mediated early autism interventions.Lay abstractMany early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy–Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2 years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents’ characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy–Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy–Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child’s behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions.
  Citation: Autism
  PubDate: 2022-10-31T12:47:51Z
  DOI: 10.1177/13623613221125630
Anxiety in children and youth with autism spectrum disorder and the
association with amygdala subnuclei structure
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  Authors: Abagail Hennessy, Diane Seguin, Susana Correa, Jianan Wang, Julio C Martinez-Trujillo, Rob Nicolson, Emma G Duerden
  Abstract: Autism, Ahead of Print.
  Autism spectrum disorder (ASD) is clinically characterized by social and communication difficulties as well as repetitive behaviors. Many children with ASD also suffer from anxiety, which has been associated with alterations in amygdala structure. In this work, the association between amygdala subnuclei volumes and anxiety was assessed in a cohort of 234 participants (mean age = 11.0 years, SD = 3.9, 95 children with ASD, 139 children were non-autistic). Children underwent magnetic resonance imaging. Amygdala subnuclei volumes were extracted automatically. Anxiety was assessed using the Screen for Child Anxiety Related Disorders, the Child Behavior Checklist, and the Strength and Difficulties Questionnaire. Children with ASD had higher anxiety scores relative to non-autistic children on all anxiety measures (all, p
  Citation: Autism
  PubDate: 2022-10-22T12:20:59Z
  DOI: 10.1177/13623613221127512
Mental health of autistic adults during the COVID-19 pandemic: The impact
of perceived stress, intolerance of uncertainty, and coping style
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  Authors: Kris Evers, Eef Gijbels, Jarymke Maljaars, Freya Rumball, Debbie Spain, Francesca Happé, Ilse Noens
  Abstract: Autism, Ahead of Print.
  Autistic individuals are at particular risk of experiencing mental health problems during the COVID-19 pandemic, yet little is known about personal characteristics that may underlie this vulnerability. This longitudinal questionnaire study with 149 autistic and 147 non-autistic adults investigated the association between perceived stress and anxiety and depressive symptoms, measured 4 months later. In addition, the moderating impact of intolerance of uncertainty and coping styles on this association was examined. Confirming previous studies, autistic adults reported poorer mental health than non-autistic individuals. Results demonstrated similar moderation models across individuals with versus without autism. Perceived stress at timepoint 1 was associated with anxiety and depression at timepoint 2. Across both participant groups, individuals with maladaptive coping strategies and higher levels of intolerance of uncertainty at timepoint 1 showed more internalizing symptoms at timepoint 2. The findings demonstrate the burden of the pandemic on the mental health of autistic adults, especially on those with high levels of perceived stress, maladaptive coping strategies, or intolerance of uncertainty. Interventions to support autistic adults during and after the pandemic might involve providing psychoeducation about the impact of stress, coping, and intolerance of uncertainty on internalizing symptoms, and teaching more adaptive ways to cope with difficult circumstances.Lay abstractMore and more research shows us that autistic individuals are at risk of experiencing mental health problems in response to the COVID-19 pandemic. However, little is known about why this is the case. At two timepoints during the pandemic, we asked 149 autistic and 147 non-autistic adults about feelings of anxiety, depression, and stress, and about characteristics that may explain why some (autistic) people have a larger chance of developing anxiety and depression during this pandemic. In our study, autistic adults experienced more anxiety and depression than non-autistic adults. Across autistic and non-autistic individuals, the people who experienced more stress at timepoint 1 experienced more anxiety and depression 4 months later. This was especially the case for those individuals who use maladaptive coping styles, such as denial or venting, and for those who have difficulties dealing with uncertain situations. Our findings show the burden of the COVID-19 pandemic on the mental health of autistic adults. Interventions to support autistic adults during and after the pandemic are needed, and they may want to focus on the negative impact of stress and teach autistic (and non-autistic) adults more adaptive ways to cope with stressful circumstances.
  Citation: Autism
  PubDate: 2022-10-20T08:30:20Z
  DOI: 10.1177/13623613221119749
Cutting our own keys: New possibilities of neurodivergent storying in
research
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  Authors: Hanna Bertilsdotter Rosqvist, Monique Botha, Kristien Hens, Sarinah O’Donoghue, Amy Pearson, Anna Stenning
  Abstract: Autism, Ahead of Print.
  Increasingly, neurodivergent people are sharing their own narratives and conducting their own research. Prominent individuals have integrated the ‘nothing about us without us’ slogan, used by neurodivergent and other disabled social activists, into academia. This article imagines a neuromixed academia. We consider how to work through challenges present in neuromixed encounters; to support cross-neurotype communication and pave the way for an ethos of community and collaboration. We explore how we might create a space in which neurodivergent experiences are seen as just one part of our complex and multifaceted identities. We do this through the process of ‘cutting our own keys’, to try out new possibilities of neurodivergent storying aimed at finding ourselves in our own stories about neurodivergence. This involves borrowing and developing methodological approaches formulated outside of research on different forms of neurodivergence, and to invent our own concepts based on our own embodied experiences and the social worlds we inhabit. Throughout, we mingle our own autoethnographic accounts in relation to research accounts and theories, as a way of illustrating the work with the text as a thinking about neurodivergence with each other in itself.Lay abstractA lot of people who do research are also neurodivergent (such as being autistic or attention deficit hyperactivity disorder), but neurodivergent people do not always feel welcome in research spaces which are often shaped around neurotypical people. Some neurotypical researchers lack confidence in talking to neurodivergent people, and others feel like neurodivergent people might not be able to do good research about other people who are like them without being biased. We think it is important that all researchers are able to work well together, regardless of whether they are neurotypical, autistic, or attention deficit hyperactivity disorder (or any other neurotype) – in truly ‘neurodiverse’ teams. In this article we talk about how to create better spaces for all researchers, where we feel valued for who we are and take each others’ needs into account. We do this using some approaches from other areas of research and talking about how they relate to our personal experiences of being neurodivergent researchers with our own personal stories. This article adds to a growing work on how we can work with people who are different from us, in more respectful and kind ways.
  Citation: Autism
  PubDate: 2022-10-19T10:12:23Z
  DOI: 10.1177/13623613221132107
Differences in white matter segments in autistic males, non-autistic
siblings, and non-autistic participants: An intermediate phenotype
approach
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  Authors: Yi-Ling Chien, Yu-Jen Chen, Wan-Ling Tseng, Yung-Chin Hsu, Chi-Shin Wu, Wen-Yih Isaac Tseng, Susan Shur-Fen Gau
  Abstract: Autism, Ahead of Print.
  Whether altered white matter microstructural property of autistic people also exists in non-autistic siblings is uncertain. The microstructures of a neural tract may not be consistent throughout the whole track. We assessed 38 cognitive-able autistic males (aged 15.8 ± 4.4 years), 39 non-autistic siblings (16.5 ± 5.7 years), and 78 age- and sex-matched non-autistic comparison people (14.4 ± 5.3 years) using tract-based automatic analysis of diffusion spectrum imaging and threshold-free cluster-weighted method. First, we identified segments within the right frontal aslant tract, frontostriatal tract, and thalamic radiation to precentral areas in both autistic people and non-autistic siblings that differed from those in non-autistic comparison people. Second, segments within bilateral cingulate gyri and callosal fibers connecting superior temporal lobes differed between autistic people and non-autistic comparison people but not between siblings and non-autistic comparison people. Third, segments within the left inferior longitudinal fasciculus and callosal fibers connecting precuneus showed increased generalized fractional anisotropy in non-autistic siblings. Our findings suggest microstructural properties of some potential neural segments that were similar between autistic people and their non-autistic siblings may serve as intermediate phenotypes of autism, facilitating further etiological searching for autism. Meanwhile, increased microstructural properties in unaffected siblings alone might indicate compensatory processes in the light of genetic predisposition for autism.Lay abstractWhite matter is the neural pathway that connects neurons in different brain regions. Although research has shown white matter differences between autistic and non-autistic people, little is known about the properties of white matter in non-autistic siblings. In addition, past studies often focused on the whole neural tracts; it is unclear where differences exist in specific segments of the tracts. This study identified neural segments that differed between autistic people, their non-autistic siblings, and the age- and non-autistic people. We found altered segments within the tracts connected to anterior brain regions corresponding to several higher cognitive functions (e.g. executive functions) in autistic people and non-autistic siblings. Segments connecting to regions for social cognition and Theory of Mind were altered only in autistic people, explaining a large portion of autistic traits and may serve as neuroimaging markers. Segments within the tracts associated with fewer autistic traits or connecting brain regions for diverse highly integrated functions showed compensatory increases in the microstructural properties in non-autistic siblings. Our findings suggest that differential white matter segments that are shared between autistic people and non-autistic siblings may serve as potential “intermediate phenotypes”—biological or neuropsychological characteristics in the causal link between genetics and symptoms—of autism. These findings shed light on a promising neuroimaging model to refine the intermediate phenotype of autism which may facilitate further identification of the genetic and biological bases of autism. Future research exploring links between compensatory segments and neurocognitive strengths in non-autistic siblings may help understand brain adaptation to autism.
  Citation: Autism
  PubDate: 2022-10-18T10:35:56Z
  DOI: 10.1177/13623613221125620
The Suicidal Ideation Attributes Scale-Modified (SIDAS-M): Development and
preliminary validation of a new scale for the measurement of suicidal
ideation in autistic adults
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  Authors: Darren Hedley, Philip J Batterham, Simon M Bury, Angela Clapperton, Kathleen Denney, Cheryl Dissanayake, Phoenix Fox, Thomas W Frazier, Emma Gallagher, Susan M Hayward, Jo Robinson, Ensu Sahin, Julian Trollor, Mirko Uljarević, Mark A Stokes
  Abstract: Autism, Ahead of Print.
  The study describes the development and preliminary psychometric validation of the Suicidal Ideation Attributes Scale-Modified (SIDAS-M), a five-item assessment of suicidal ideation for use with autistic adults. Participants (n = 102 autistic adults; 58% women, 34% men, 8% nonbinary; Mage = 41.75, SD = 12.89) completed an online survey including the SIDAS-M at Time 1 and participated in follow-up interviews at Time 2 (~111 days later). A single factor solution provided good to excellent fit to the data (comparative fit index = 0.961, Tucker–Lewis index = 0.921; standardized root mean square residual = 0.027), with all items showing good to excellent loadings (0.74–0.91). SIDAS-M total score (ω=.930, bias-corrected and accelerated 95% confidence interval (BCa 95% CI) [.90, .95]) demonstrated good convergent validity, correlating significantly with existing suicide specific (ρ=.442–.698, p
  Citation: Autism
  PubDate: 2022-10-14T06:05:14Z
  DOI: 10.1177/13623613221131234
Parent experiences of obtaining an autism diagnosis for their daughter: An
interpretative phenomenological analysis
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  Authors: Nerelie C Freeman, Pascale Paradis
  Abstract: Autism, Ahead of Print.
  The process of getting an autism diagnosis can be a stressful and uncertain time for families. While the experiences of parents seeking an autism diagnosis for their child have been explored in previous research, the experiences of families with a daughter have been underrepresented. It is likely that their experience is markedly different given that females are often misdiagnosed and/or are diagnosed at a later age. Semi-structured interviews were conducted with six families, and interpretative phenomenological analysis was used along with member checks to derive themes from the participants’ narratives. Three superordinate themes emerged from the analysis: ‘Something’s not right’ consisted of narratives describing the process of getting their daughter diagnosed and ‘So many barriers’ captured the factors that delayed assessment and diagnosis. Finally, the third theme ‘I wanted to just get this process done and dusted’ explored the range of emotions experienced by families during the assessment process. The importance of challenging outdated conceptualisations of autism and providing further training to increase health professionals’ confidence when diagnosing autistic females is emphasised, as well as recognising that families may experience a range of emotions during the assessment and diagnostic process, including positive ones.Lay abstractAutistic females are often diagnosed later than males and are also more likely to be misdiagnosed with other conditions. Co-occurring conditions may also be diagnosed at the time of the assessment but their autism diagnosis is missed. The majority of research examining the parent experience of obtaining an autism diagnosis for their child has included predominantly or exclusively male children in their samples. This study examines the experiences of parents in obtaining an autism diagnosis for their daughters in Australia through interview data which allowed for an exploration of their lived experiences. Several of the parents reported positive feelings of excitement or curiosity in relation to the assessment process which are emotions that have not been reported in earlier studies. While recent research advances have improved our understanding of gender differences in autistic behaviours, the findings of this study suggest that some practitioners have obsolete knowledge which may lead to misdiagnosis or missed diagnosis in some females. Although the extent that these experiences are representative of parents in the wider community is unknown, the fact that they are still being reported in the present day suggests that a proportion of health professionals continue to practice with outdated conceptualisations of autism.
  Citation: Autism
  PubDate: 2022-10-12T07:01:30Z
  DOI: 10.1177/13623613221129830
Detecting dodgy behaviour: The role of autism, autistic traits and theory
of mind
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  Authors: Neil Brewer, Carmen A Lucas, Alliyza Lim, Robyn L Young
  Abstract: Autism, Ahead of Print.
  We examined whether theory of mind difficulties often considered to characterise autistic individuals impair their ability to detect the presence of dodgy or suspicious behaviour in interactions, thereby rendering them especially vulnerable to becoming involved in criminal activity or being victimised. Using a signal detection theory approach, we compared autistic (N = 72; Verbal Comprehension Index = 88–122, M = 106.6) and non-autistic (N = 70; Verbal Comprehension Index = 86–120, M = 104.4) adults’ ability to detect dodgy or suspicious behaviour across a broad array of scenarios (N = 136). Although theory of mind performance was poorer for the autistic group, frequentist and Bayesian analyses indicated there were no group differences in either the standard measures of discrimination performance obtainable using a signal detection theory approach or in terms of a bias towards reporting dodgy behaviour. Furthermore, there was no indication of a relationship between dodginess detection and autistic traits. However, regardless of group membership, theory of mind difficulties were associated with poorer discrimination of dodgy behaviour, highlighting an individual difference variable that may increase the vulnerability of both autistic and non-autistic individuals to involvement in some form of criminal activity or to becoming a victim of crime.Lay abstractDifficulties in reading others’ minds make it difficult to anticipate their future behaviour. It has often been argued that such difficulties contribute to autistic individuals becoming enmeshed in criminal activity. However, supportive scientific evidence is virtually non-existent. We compared the ability of groups of autistic and non-autistic adults of similar intellectual ability to detect dodgy or suspicious behaviour across a wide range of scenarios. Although the autistic group performed more poorly than the non-autistic group on an established measure of mindreading, there were no group differences in the ability to detect dodginess. Nor did we find any evidence that detecting dodgy behaviour was associated with the degree of autistic traits reported by individual participants. However, when we combined the two groups, difficulty reading the minds of others was indeed associated with poorer detection of dodginess, thus highlighting a characteristic of individuals that may well increase the likelihood of becoming involved in crime or exploited for autistic and non-autistic individuals alike.
  Citation: Autism
  PubDate: 2022-10-11T08:28:15Z
  DOI: 10.1177/13623613221125564
An evaluation of intervention research for transition-age autistic youth
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  Authors: Kristen Bottema-Beutel, Shannon Crowley LaPoint, So Yoon Kim, Sarah Mohiuddin, Qun Yu, Rachael McKinnon
  Abstract: Autism, Ahead of Print.
  In this systematic evaluation of intervention research for transition-age autistic youth, we examined quality indicators in 193 group and single-case design intervention studies, which tested effects on 1258 outcomes. Behaviorally based interventions were the most common intervention type. We found significant threats to internal validity for the majority of studies, including inadequate randomization, unmasked assessors, and too few data points to infer functional relations. The majority of outcomes were measured in contexts similar to the intervention and were conceptualized as behaviors directly addressed by intervention procedures. As such, they are of unclear long-term utility for autistic people entering adulthood. Adverse events were rarely reported. We suggest several avenues for improving intervention research for this age group.Lay abstractIn this study, we assess the quality of intervention research that focuses on autistic youth who are 14–22 years old. We found 193 different studies on this topic, and carefully reviewed them. Most of these studies tested strategies that were behavioral. This means that they used procedures like prompting and rewards to change participants’ behavior. We found that the majority of studies had problems that make it hard to determine whether or not the intervention worked. The problems related to how researchers designed their studies, and how they measured the study outcomes. We also found that researchers rarely tried to find out if the strategies they studied had unintended negative effects for participants. Because of these issues, we make suggestions for how researchers might design better studies that will let people know how well the strategies worked.
  Citation: Autism
  PubDate: 2022-10-03T09:45:55Z
  DOI: 10.1177/13623613221128761
Strategies for capacity building in a low-resource setting:
Stakeholders’ voices
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  Authors: James D Lee, Hedda Meadan, Enkhjin Oyunbaatar, Amarbuyan Amar
  Abstract: Autism, Ahead of Print.
  Although global prevalence of autism has grown substantially, researchers still report inequity in access to evidence-based interventions in many low-resource settings where majority of world’s children live. Capacity building of diverse stakeholders in low-resource settings has been suggested to be a potential way to mitigate low levels of access to resources; however, little is known about what these stakeholders consider as helpful strategies in capacity building. In this qualitative research, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with professionals in Mongolia. Three themes emerged from this study, including (a) partnership, (b) advocacy, and (c) empowerment. Each theme also contained several categories. For example, partnerships included enhancing collaboration among stakeholders and collaboration with international development agencies; advocacy included parental and legislative advocacy; and empowerment included training for diverse stakeholders, including caregivers and professionals. Implications and directions for future research are also suggested.Lay abstractPrevalence of autism is increasing all around the globe, but there is still great inequity in accessing evidence-based interventions. Although the field of autism research has made great strides in identifying and establishing evidence-based interventions, dissemination and implementation of these interventions have been reported as inequitable. This inequity is especially highlighted in many low-resource settings, such as Mongolia. As a field, there is still much to be learned about what strategies are used by stakeholders in low-resource settings to build capacity and to mitigate the hardships. To gain a deeper understanding of strategies for capacity building within a low-resource setting, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with various professionals who work in Mongolia. These stakeholders reported three main strategies, including (a) partnership, (b) advocacy, and (c) empowerment, which included several strategies and implications on capacity-building practices. Furthermore, the findings from this study may suggest important implications for future intervention research.
  Citation: Autism
  PubDate: 2022-09-27T12:25:01Z
  DOI: 10.1177/13623613221127077
‘Instruments are good at eliciting information; scores are very
dangerous’: The perspectives of clinical professionals regarding
neurodevelopmental assessment
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  Authors: Barry Coughlan, Matt Woolgar, Emma JL Weisblatt, Robbie Duschinsky
  Abstract: Autism, Ahead of Print.
  Clinical judgement is a crucial part of autism and attention deficit hyperactivity disorder (ADHD) assessments. This study aims to harness insights from psychology and sociology to explore clinical perspectives and assessment practices of autism and attention deficit hyperactivity disorder. Qualitative interviews were conducted with health care professionals (n = 17). Interviews were conducted between January and May 2019. Data were analysed using a thematic approach. Themes were sorted into two interrelated categories (1) approaches to diagnosis (2) elements of diagnosis. Approaches to diagnosis were comprised of the following subthemes: nature of diagnosis, application of diagnosis: natural and pragmatic, revisiting conceptualisations: sub-optimal practice & unhelpful diagnoses, autism and attention deficit hyperactivity disorder. Elements of diagnosis contained three related subthemes: contextualising standardised assessments, triangulating material, organisational factors. There is sometimes a pragmatic as well as nosological dimension to diagnosis. Competing desires for consistency and utility add further complexity to neurodevelopmental assessment.Lay abstractAutism and attention deficit hyperactivity disorder are common behaviourally diagnosed conditions. One of the key aspects of diagnosis is clinical judgement. Yet despite decades of research, it is only in recent times that researchers have started exploring clinicians’ perspectives on diagnosing these conditions. We aimed to add to this body of knowledge by conducting interviews with 17 experienced health care professionals in the United Kingdom to hear their perspectives on diagnosing autism and attention deficit hyperactivity disorder. Clinicians reflected that for some children and young people, diagnosis is reasonably straightforward; however, in other situations, decisions are made on more pragmatic grounds (i.e. will this be helpful). We identified some differences of opinion between professionals and organisation which adds to the complexity of applying a diagnosis. We recommend several areas for future research and point to some practical and philosophical implications of the work.
  Citation: Autism
  PubDate: 2022-09-26T05:52:23Z
  DOI: 10.1177/13623613221121413
Concomitant medication use in children with autism spectrum disorder: Data
from the Autism Biomarkers Consortium for Clinical Trials
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  Authors: Logan Shurtz, Chloe Schwartz, Charlotte DiStefano, James C McPartland, April R Levin, Geraldine Dawson, Natalia M Kleinhans, Susan Faja, Sara J Webb, Frederick Shic, Adam J Naples, Helen Seow, Raphael A Bernier, Katarzyna Chawarska, Catherine A Sugar, James Dziura, Damla Senturk, Megha Santhosh, Shafali S Jeste
  Abstract: Autism, Ahead of Print.
  Children with autism spectrum disorder are prescribed various medications to address behavior and mood. In clinical trials, individuals taking concomitant psychotropic medications often are excluded to maintain homogeneity and prevent contamination of clinical endpoints. However, this choice may compromise the representativeness of the sample. In a recent study designed to identify biomarkers and endpoints for clinical trials (the Autism Biomarkers Consortium for Clinical Trials), school-age children with autism spectrum disorder were enrolled without excluding for medications, providing the opportunity to examine characteristics of psychotropic medication use and guide future decisions on medication-related inclusion criteria. The aims of the current analysis were (1) to quantify the frequency and type of psychotropic medications reported in school-age children enrolled in the study and (2) to examine behavioral features of children with autism spectrum disorder based on medication classes. Of the 280 children with autism spectrum disorder in the cohort, 42.5% were taking psychotropic medications, with polypharmacy in half. The most commonly reported psychotropic medications included melatonin, stimulants, selective serotonin reuptake inhibitors, alpha agonists, and antipsychotics. Our findings suggest that exclusion of children taking concomitant psychotropic medications could limit the representativeness of the study population, perhaps even excluding children who may most benefit from new treatment options.Lay abstractChildren with autism spectrum disorder are prescribed a variety of medications that affect the central nervous system (psychotropic medications) to address behavior and mood. In clinical trials, individuals taking concomitant psychotropic medications often are excluded to maintain homogeneity of the sample and prevent contamination of biomarkers or clinical endpoints. However, this choice may significantly diminish the clinical representativeness of the sample. In a recent multisite study designed to identify biomarkers and behavioral endpoints for clinical trials (the Autism Biomarkers Consortium for Clinical Trials), school-age children with autism spectrum disorder were enrolled without excluding for medications, thus providing a unique opportunity to examine characteristics of psychotropic medication use in a research cohort and to guide future decisions on medication-related inclusion criteria. The aims of the current analysis were (1) to quantify the frequency and type of psychotropic medications reported in school-age children enrolled in the ABC-CT and (2) to examine behavioral features of children with autism spectrum disorder based on medication classes. Of the 280 children with autism spectrum disorder in the cohort, 42.5% were taking psychotropic medications, with polypharmacy in half of these children. The most commonly reported psychotropic medications included melatonin, stimulants, selective serotonin reuptake inhibitors, alpha agonists, and antipsychotics. Descriptive analysis showed that children taking antipsychotics displayed a trend toward greater overall impairment. Our findings suggest that exclusion of children taking concomitant psychotropic medications in trials could limit the clinical representativeness of the study population, perhaps even excluding children who may most benefit from new treatment options.
  Citation: Autism
  PubDate: 2022-09-10T05:19:52Z
  DOI: 10.1177/13623613221121425
Insistence on sameness for food space appropriation: An exploratory study
on Brazilians with autism (self-)diagnosis in adulthood
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  Authors: JungJa Park-Cardoso, Ana Paula Soares da Silva
  Abstract: Autism, Ahead of Print.
  Insistence on Sameness has been pathologized as a subtype of restricted, repetitive patterns of behavior, interests, or activities, in autism. We examined the meanings of Insistence on Sameness for autistic adults through the lens of critical autism studies and environmental psychology, exploring their foodways and experiences of food environments, in relation to eating out and grocery shopping, and their experiences of autism (self-)diagnosis. Data were collected from earlier individual email interviews with Brazilian adults on the autism spectrum (N = 16), either formally diagnosed in adulthood (n = 10) or self-diagnosed (n = 6). Our thematic analysis generated the following three themes: (1) Insistence on Sameness behaviors in food space as participants’ efforts for human–environment optimization—reducing uncertainty, uncontrollability, and exposure to unwanted sensory stimuli and social interaction; (2) suppressed Insistence on Sameness behaviors for being considered weird habits; and (3) realization of Insistence on Sameness as an authentically autistic way of coping when self-knowledge deepens through autism (self-)diagnosis. Our findings suggest autistic adults’ insistence on sameness is an authentically autistic way to appropriate space and exercise their right to comfortably co-exist and live as human beings and as themselves.Lay abstractInsistence on sameness is common in autistic individuals and continues into adulthood. Research shows it may be a way to cope with environments because of their sensory sensitivity, intolerance to uncertainty, and anxiety. Understanding the reasons for insistence on sameness from the perspective of autistic adults is important. To study the meanings of insistence on sameness for autistic adults, we interviewed 16 Brazilian autistic adults. All 10 formally diagnosed participants were diagnosed in adulthood. Six participants identified as being on the autism spectrum without formal diagnosis. During the interviews by email, we first asked about participants’ experiences with autism diagnosis, either formal diagnosis or self-diagnosis. Then, we asked about their experiences in places for eating out and grocery shopping. We found they tended to always go to the same places and use protective accessories to eat or shop comfortably. But their such behaviors were considered weird habits, first by other people and later by themselves. While trying to control their weird habits because of social pressure, they often suffered anxiety and meltdowns. When they finally learned of their autism in adulthood, they began to better understand who they are and why they experience the environment differently from others. This new understanding taught them that their so-called weird habits are actually part of their authentically autistic ways to cope with the weirder world. This study suggests that autistic adults’ insistence on sameness is an authentically autistic way to exercise their right to comfortably co-exist and live as human beings and as themselves.
  Citation: Autism
  PubDate: 2022-09-10T05:16:18Z
  DOI: 10.1177/13623613221121417
Integrating autistic perspectives into autism science: A role for autistic
autobiographies
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  Authors: Janette Dinishak, Nameera Akhtar
  Abstract: Autism, Ahead of Print.
  Autism science faces several conceptual and ethical challenges. These include fundamental issues such as how to characterize autism and the fact that research findings and how they are interpreted sometimes contribute to negative perceptions of autistic people. We argue that some of these challenges can be addressed by centering the perspectives of autistic people and focus on one way to accomplish this: having non-autistic researchers critically engage with personal accounts of autistic experience. We discuss some of the advantages and challenges of engaging with these accounts and argue that they can play a role in the reform of autism science.Lay abstractAutism science faces challenges in how to think about autism and what questions to focus on, and sometimes contributes to stigma against autistic people. We examine one way that non-autistic researchers may start to combat these challenges: by reading and reflecting on autistic people’s descriptions of their personal experiences (e.g. autobiographies) of what it is like to be autistic. In this article, we review some of the advantages and challenges of this approach and how it may help combat some of the challenges currently facing autism science by focusing studies on the questions autistic people find most important, counteracting stereotypes, and increasing understanding of autistic experiences.
  Citation: Autism
  PubDate: 2022-09-09T05:47:32Z
  DOI: 10.1177/13623613221123731
Barriers and facilitators for obtaining support services among underserved
families with an autistic child: A systematic qualitative review
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  Authors: Carla Wallace-Watkin, Jeff Sigafoos, Hannah Waddington
  Abstract: Autism, Ahead of Print.
  Families of autistic children from underserved populations participate in support services at lower rates than other families. To better understand possible reasons for this inequity, we reviewed qualitative studies examining parent-reported barriers and facilitators to accessing and participating in support services. A systematic search identified 18 articles that met inclusion criteria. Resulting thematic analysis located three themes: (a) support service accessibility, (b) diversity of support services, and (c) community. Parents reported that financial pressures, geographic location, and service flexibility influenced their ability to obtain support services. Implications for service delivery and areas for future research are discussed.Lay abstractFamilies from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery.
  Citation: Autism
  PubDate: 2022-09-09T05:44:09Z
  DOI: 10.1177/13623613221123712
Describing (pre)linguistic oral productions in 3- to 5-year-old autistic
children: A cluster analysis
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  Authors: Pauline Maes, Marielle Weyland, Mikhail Kissine
  Abstract: Autism, Ahead of Print.
  In many autistic children, speech onset is delayed and expressive language emerges after 3 years of age. We qualitatively and quantitatively describe oral productions of autistic preschoolers, including many non- or minimally speaking, recorded during interactions with a caregiver and with an experimenter. Data clustering on manually coded oral production samples indicates five validated linguistic profiles of oral production in this diverse and inclusive sample (n = 59) of 3- to 5-year-old autistic children with highly variable expressive language abilities. These profiles are then compared on a series of demographic (age, socioeconomic status) and psychometric (autism severity, nonverbal and verbal IQ) measures, as well as on additional measures of language (expressive vocabulary, phonetic inventories). Two clusters are composed of speaking autistic children, while the three others comprise non- or minimally speaking children with qualitatively different patterns of vocal productions. The five-profile division suggests that traditional binary division of speaking vs nonspeaking children does not do justice to the complexity of early expressive language in autism.Lay abstractFor most autistic children, spoken language emergence and development happen after the age of 3. Once they start developing and using spoken language, some eventually manage to reach typical levels of language abilities, while others remain minimally speaking into adulthood. It is therefore difficult to consider young autistic preschoolers as a homogeneous group in terms of spoken language levels. In our study, we breakdown a representative and inclusive group of children on the spectrum aged from 3 to 5 into five subgroups that correspond to different linguistic profiles. To do so, we qualitatively described children’s (pre)verbal productions elicited during interactions with a parent and with an experimenter. We then used a type of statistical analysis called cluster analysis to group together the children that had a similar expressive (pre)linguistic behavior. Using this analysis, we were able to delineate five linguistic profiles with qualitatively different patterns of vocal production. Two of these profiles are composed of speaking children; the three others are composed of non- or minimally speaking children. Our findings show that traditional binary division of speaking versus nonspeaking autistic children is not precise enough to describe the heterogeneity of early spoken language in young autistic children. They also support the use of qualitative descriptions of vocal productions and speech to accurately document children’s level of language, which could, in turn, help design very finely tailored language intervention specific to each child.
  Citation: Autism
  PubDate: 2022-09-08T06:07:08Z
  DOI: 10.1177/13623613221122663
No differences between adults with and without autism in audiovisual
synchrony perception
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  Authors: Ricarda F Weiland, Tinca JC Polderman, Dirk JA Smit, Sander Begeer, Erik Van der Burg
  Abstract: Autism, Ahead of Print.
  To facilitate multisensory processing, the brain binds multisensory information when presented within a certain maximum time lag (temporal binding window). In addition, and in audiovisual perception specifically, the brain adapts rapidly to asynchronies within a single trial and shifts the point of subjective simultaneity. Both processes, temporal binding and rapid recalibration, have been found to be altered in individuals with an autism spectrum disorder diagnosis. Here, we used a large adult sample (autism spectrum disorder: n = 75, no autism spectrum disorder: n = 85) to replicate these earlier findings. In this study, audiovisual stimuli were presented in a random order across a range of stimulus onset asynchronies, and participants indicated whether they were perceived simultaneously. Based on the synchrony distribution, their individual temporal binding window and point of subjective simultaneity were calculated. Contrary to previous findings, we found that the temporal binding window was not significantly different between both groups. Rapid recalibration was observed for both groups but did not differ significantly between groups. Evidence of an age effect was found which might explain discrepancies to previous studies. In addition, neither temporal binding window nor rapid recalibration was correlated with self-reported autistic symptoms or sensory sensitivity.Lay abstractIt has been known for a long time that individuals diagnosed with autism spectrum disorder perceive the world differently. In this study, we investigated how people with or without autism perceive visual and auditory information. We know that an auditory and a visual stimulus do not have to be perfectly synchronous for us to perceive them as synchronous: first, when the two are within a certain time window (temporal binding window), the brain will tell us that they are synchronous. Second, the brain can also adapt quickly to audiovisual asynchronies (rapid recalibration). Although previous studies have shown that people with autism spectrum disorder have different temporal binding windows, and less rapid recalibration, we did not find these differences in our study. However, we did find that both processes develop over age, and since previous studies tested only young people (children, adolescents, and young adults), and we tested adults from 18 to 55 years, this might explain the different findings. In the end, there might be quite a complex story, where people with and without autism spectrum disorder perceive the world differently, even dependent on how old they are.
  Citation: Autism
  PubDate: 2022-09-08T06:02:31Z
  DOI: 10.1177/13623613221121414
Parents’ perceptions of the impact of COVID-19 and school transition on
autistic children’s friendships
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  Authors: Laura Fox, Kathryn Asbury, Aimee Code, Umar Toseeb
  Abstract: Autism, Ahead of Print.
  Friendships play a key role in supporting a successful transition to a new school for autistic children and young people. However, little is known about how these relationships have been impacted by restrictions put in place during the COVID-19 pandemic. This study aimed to explore how parents perceived the impact of COVID-19 on their autistic child’s friendships during transition to a new school. Semi-structured interviews were carried out with 14 parents of autistic children in the United Kingdom. Data were analysed using reflexive thematic analysis. Parents discussed a variety of experiences, which differed between and within school types and age groups. Several factors influenced children’s friendships during transition including support from their new school and others’ understanding of their needs. Parents described the differing expectations of what friendship was and how that affected their children’s existing and new relationships. For some, COVID-19 negatively impacted on friendships by reducing contact with existing and new friends. Others experienced positive or neutral experiences due to lockdown restrictions. This study highlights the diversity of needs among autistic children and calls for a personalised approach to transition support beyond the pandemic as one way of supporting autistic children to develop positive peer relationships.Lay abstractResearch shows that moving schools can be a challenging time for autistic children and young people. One factor that has been found to support successful transition is friendships. However, there is little research exploring how transition between schools affects autistic children’s friendships, and even less on how children’s relationships during transition have been impacted by COVID-19. Fourteen parents of autistic children and young people were interviewed about their child’s move to a new school and the impact they felt this had on their friendships. Parents described how moving with existing friends helped some children to find the transition less challenging. Others had differing experiences, with their children’s friendships playing a much smaller role in the move. Differences were also seen with regard to the impact of COVID-19, with some parents speaking of how hard being away from friends was for their child, while others found the social restrictions a welcome break from interacting with peers. The study highlights how different the experiences of autistic individuals, and their parents, can be and the importance of a child-centred approach to transition support.
  Citation: Autism
  PubDate: 2022-09-06T09:15:58Z
  DOI: 10.1177/13623613221123734
Maternal obesity, diabetes, preeclampsia, and asthma during pregnancy and
likelihood of autism spectrum disorder with gastrointestinal disturbances
in offspring
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  Authors: Sarah A Carter, Jane C Lin, Ting Chow, Xin Yu, Md Mostafijur Rahman, Mayra P Martinez, Klara Feldman, Sandrah P Eckel, Jiu-Chiuan Chen, Zhanghua Chen, Pat Levitt, Frederick W Lurmann, Rob McConnell, Anny H Xiang
  Abstract: Autism, Ahead of Print.
  Gastrointestinal disturbances (GIDs) are relatively common in children diagnosed with autism spectrum disorder (ASD). This study assessed associations between maternal obesity, diabetes, preeclampsia, and asthma and likelihood of ASD with GIDs. This retrospective cohort study included 308,536 mother–child pairs of singletons born between 2001 and 2014 in a single integrated health care system. Social demographics, maternal health conditions during pregnancy, and child’s ASD and/or GID diagnosis by age 5 were extracted from electronic medical records. Child’s outcome was classified as: no ASD no GIDs; no ASD with GIDs; ASD no GIDs; and ASD with GIDs. Multinomial logistic regression was used to estimate odds ratios of child’s outcomes associated with maternal exposures, adjusting for covariates. Compared to children with neither disorder, each maternal condition was associated with higher odds of no ASD with GIDs, ASD no GIDs, and ASD with GIDs. Association was greatest for likelihood of ASD with GIDs (Maternal obesity odds ratio (95% confidence interval): 1.37 (1.22–1.54); Diabetes: 1.50 (1.28–1.76); Preeclampsia: 1.63 (1.36–1.95); Asthma: 1.39 (1.17–1.67); relative to no ASD no GIDs). Associations were robust to mutual adjustment for all maternal exposures. Maternal obesity, diabetes, preeclampsia, and asthma exposure during pregnancy may increase likelihood of both GIDs and ASD with or without co-occurring GIDs in offspring. This association was greatest in children diagnosed with ASD with co-occurring GIDs.Lay abstractAutism spectrum disorder is heterogeneous and often accompanied by co-occurring conditions. Previous studies have shown that maternal health conditions during pregnancy including obesity, diabetes, preeclampsia, and asthma were associated with increased likelihood of autism. However, little has been done examining the likelihood associated with autism with co-occurring conditions. This study assessed these maternal health conditions in relationship to autism and gastrointestinal disturbances, a common co-occurring condition in children diagnosed with autism. Data included 308,536 mother-child pairs from one integrated health care system with comprehensive electronic medical records. Among the study cohort, 5,131 (1.7%) children had a diagnosis of autism by age 5. Gastrointestinal disturbances were present in 35.4% of children diagnosed with autism and 25.1% of children without autism diagnoses. Our results showed that each of the four maternal health conditions during pregnancy was associated with increased likelihood of gastrointestinal disturbances, autism without gastrointestinal disturbances, and autism with gastrointestinal disturbances. For all four maternal health conditions, the association was greatest for likelihood of autism with gastrointestinal disturbances. Given that children diagnosed with autism are more likely to have gastrointestinal disturbances and over 80% of gastrointestinal disturbances in this cohort were diagnosed prior to autism diagnosis, this study suggests that there may be common biological pathways between autism and gastrointestinal disturbances impacted by these maternal exposures. Future studies are warranted to assess associations between different exposures and autism with other co-occurring conditions to increase our understanding of autism heterogeneity.
  Citation: Autism
  PubDate: 2022-09-05T05:13:29Z
  DOI: 10.1177/13623613221118430
The impact of a positive autism identity and autistic community solidarity
on social anxiety and mental health in autistic young people
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  Authors: Kate Cooper, Ailsa J Russell, Jiedi Lei, Laura GE Smith
  Abstract: Autism, Ahead of Print.
  Autism is increasingly seen as a social identity, as well as a clinical diagnosis. Evidence suggests that autistic adults who have stronger autism social identification have better psychological well-being. Autism is a condition which impacts on social interactions, and so one’s sense of autism identification may be particularly important for reducing social anxiety, which is common in autistic adolescents. We aimed to investigate how the subcomponents of autism identification relate to social anxiety in autistic young people. We hypothesised that autistic young people who had a higher satisfaction with their autism identity, and more solidarity with other autistic people, would have better psychological well-being and lower social anxiety. 121 autistic young people between the ages of 15–22 completed questionnaires measuring self-reported autism traits, social anxiety, psychological well-being, and different components of autism social identification. We conducted regression analyses controlling for age, gender, and autism traits. We found that higher autism satisfaction was associated with higher psychological well-being and lower social anxiety. Young people with higher autism solidarity had higher psychological well-being, but there was no significant relationship between solidarity and social anxiety. We conclude that it is important to support autistic young people to develop autism social identification.Lay abstractAutism is a diagnosis given to individuals by professionals but is also increasingly seen as an identity which an individual can choose for themselves. We wanted to explore how having autism as an identity affects autistic young people. There is evidence that autistic adults have better psychological well-being when they feel more solidarity with other autistic people and feel positively about being autistic. We know that autistic teenagers often feel anxious in social situations. Having a positive autism identity might help alleviate social anxiety associated with being autistic. We wanted to find out if autistic young people who felt more solidarity with other autistic people, and had more positive feelings about autism, had better psychological well-being and less social anxiety. We asked 121 autistic people aged 15–22 years to complete some questionnaires. These questionnaires asked about the young person’s autism traits, social anxiety, and psychological well-being. The questionnaires also asked how satisfied they felt to be autistic (satisfaction) and how much solidarity they felt with the autism community (solidarity). We found that autistic young people who had higher autism satisfaction had better psychological well-being and lower social anxiety. Young people who felt more solidarity with other autistic people had higher psychological well-being. There was no association between autism solidarity and social anxiety. We conclude that is important to support autistic young people to develop positive feelings about autism and to feel solidarity with other autistic people.
  Citation: Autism
  PubDate: 2022-09-05T05:10:36Z
  DOI: 10.1177/13623613221118351
Multimorbidity patterns and subgroups among autistic adults with
intellectual disability: Results from the EFAAR study
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  Authors: Stéphanie Miot, Raphaël Chancel, Marianne Peries, Sophie Crepiat, Sylvie Couderc, Eric Pernon, Marie-Christine Picot, Véronique Gonnier, Claude Jeandel, Hubert Blain, Amaria Baghdadli
  Abstract: Autism, Ahead of Print.
  Multimorbidity, defined as having two or more chronic health conditions, is associated with elevated polypharmacy and mortality. Autism spectrum disorder is a whole-body chronic health condition in which comorbidities – in particular co-occurring intellectual disability – contribute to high clinical heterogeneity, polypharmacy and premature mortality. We aimed to determine specific multimorbidity patterns among autism spectrum disorder + intellectual disability adults, and to identify participants’ subgroups based on multimorbidity features. We used baseline examination data from a previous exploratory prospective multicentric study that included 63 autism spectrum disorder + intellectual disability adults. Multimorbidity patterns and subgroups were determined using clustering approaches. We observed 84.1% multimorbidity, significantly associated with age. We identified a dominant multimorbidity pattern, combining immune dysfunction, gastrointestinal disorders, neurological, and joint diseases. Four participants’ subgroups could be distinguished by multimorbidity, autonomy and polypharmacy. Two clusters were distinguished by the prevalence and consequences of multimorbidity. One cluster involved women with endocrine disorders. The final cluster was composed of older adults with the lowest autism spectrum disorder severity but greater multimorbidity, including cardiovascular and kidney diseases. Our results support a role for the gut–brain axis in the pathophysiology of autism spectrum disorder + intellectual disability multimorbidity. Furthermore, we identified patient subgroups with specific needs, underscoring the importance of a holistic approach for autism spectrum disorder + intellectual disability adults.Lay abstractMultimorbidity relates to having multiple chronic health conditions. It is a risk factor for poor health and reduces life expectancy. Autistic people have multiple chronic health conditions and die prematurely, especially if they have an intellectual disability (autism spectrum disorder and intellectual disability). Certain pathophysiological processes observed in autism spectrum disorder are common to those related to the genesis and/or maintenance of multimorbidity. Furthermore, multimorbidity could be helpful in better identifying patient subgroups in autism spectrum disorder. It is therefore essential to better characterize multimorbidity and its consequences in the subgroup of autism spectrum disorder + intellectual disability individuals to offer them personalized care. We conducted a preliminary study of 63 autism spectrum disorder + intellectual disability adults to classify them according to their multimorbidity and search for a specific combination of chronic health conditions. We observed high and early multimorbidity in this sample and identified four classes of participants, distinguished by their multimorbidity status, independence and number of treatments. In addition, we observed a dominant combination of multimorbidity in our sample, combining immune dysfunction and gastrointestinal disorders, neurological and joint diseases. These findings support the hypothesis that an altered gut–brain relationship is involved in the risk of autism spectrum disorder, its outcome, and its association with chronic health conditions. Although larger studies are needed, our results suggest that subgroups of autism spectrum disorder + intellectual disability individuals can be identified based on their multimorbidity and potentially different ageing trajectories. A more comprehensive and personalized approach is needed to reduce the burden of multimorbidity and increase the quality of life and life expectancy in autism spectrum disorder/ intellectual disability.
  Citation: Autism
  PubDate: 2022-09-03T06:52:13Z
  DOI: 10.1177/13623613221121623
The Autism-Spectrum Quotient–Hebrew version: Psychometric properties of
a full and a short form, adapted for DSM-5
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  Authors: Ofer Golan, Michael Terner, Sandra Israel-Yaacov, Carrie Allison, Simon Baron-Cohen
  Abstract: Autism, Ahead of Print.
  The Autism-Spectrum Quotient is a self-report scale, used to assess autistic traits. It was tested cross-culturally, and a short version was created to clinically refer adults for an autism assessment. This study aimed to examine the properties of the Hebrew version of the Autism-Spectrum Quotient and to create a short version suitable for Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Ninety-three clinically diagnosed autistic adults (24 females) aged 18–53, and 147 comparable controls (34 females) completed the Hebrew version of the Autism-Spectrum Quotient. Ten clinicians specializing in diagnosing autism in adults classified the Autism-Spectrum Quotient’s items according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. The Hebrew version of the Autism-Spectrum Quotient showed good internal consistency (Kuder-Richardson 20 = 0.90). Based on the prevalence of autism among clinically referred adults (70%), receiver operating characteristic analysis yielded area under the curve of 0.94. A cutoff of 21 demonstrated high sensitivity (0.90), specificity (0.76), positive predictive value (0.90), and negative predictive value (0.77). The short version of the Hebrew Autism-Spectrum Quotient included five social communication and five restricted, repetitive behavior items, which represented two social communication and two restricted, repetitive behavior criteria of Diagnostic and Statistical Manual of Mental Disorders (5th ed.). It showed good internal consistency (Kuder-Richardson 20 = 0.86), and receiver operating characteristic analysis yielded area under the curve of 0.95. An optimal clinical cutoff of five showed high sensitivity (0.90), specificity (0.82), positive predictive value (0.92), and negative predictive value (0.78). The Hebrew version of the Autism-Spectrum Quotient and the short version of the Hebrew Autism-Spectrum Quotient can be effectively used to help screen for autism in clinically referred adults.Lay AbstractDespite the attempt to diagnose autism at an early age, there are still many individuals who would only get an autism diagnosis in adulthood. For these adults, a questionnaire that could assist in highlighting their need to seek diagnostic assessment is needed. The Autism-Spectrum Quotient is a self-report scale used to assess autistic traits. It was tested cross-culturally, and a short version was recommended to help identify adults who should be referred for an autism assessment. However, its relevance for the up-to-date diagnostic criteria, according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), has not been tested. This study aimed to examine the psychometric properties of the Hebrew version of the Autism-Spectrum Quotient and to create a short version of the Hebrew Autism-Spectrum Quotient, based on items which map on to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. Ninety-three autistic adults (24 females), aged 18–51, clinically diagnosed according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.), and 147 comparable controls (34 females) filled out the Hebrew version of the Autism-Spectrum Quotient. Ten clinicians who specialize in diagnosing autism in adults classified the Autism-Spectrum Quotient’s items according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. The short version of the Hebrew Autism-Spectrum Quotient comprised items that best differentiated between adults with and without autism, five items representing each of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) diagnostic domains. The overall probability for participants to be correctly classified as autistic or neurotypical was 86% for the Hebrew version of the Autism-Spectrum Quotient and 88% for the short version of the Hebrew Autism-Spectrum Quotient. We conclude that both versions are reliable and sensitive instruments that can help referring adults for autism assessment.
  Citation: Autism
  PubDate: 2022-09-02T11:51:33Z
  DOI: 10.1177/13623613221117020
Autistic experiences of applied behavior analysis
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  Authors: Laura K Anderson
  Abstract: Autism, Ahead of Print.
  Autism spectrum disorder is a developmental disability affecting individuals across their entire lifespan. Autistic individuals have differences from nonautistic people (sometimes called allistic or neurotypical people) in social skills, communication, and atypical interests and/or repetitive behaviors. Approximately 1 in 59 children are born autistic, leading to over 3.5 million autistic Americans. Applied behavior analysis is one of the first and most common interventions recommended for autistic children. However, autistic self-advocates argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed. This phenomenological qualitative study examined seven autistic individuals who received applied behavior analysis interventions as children to understand what autistic adults perceive as the costs and benefits of applied behavior analysis interventions, how they feel about the applied behavior analysis interventions they received, and what recommendations autistic adults have for the future of applied behavior analysis. The findings include: Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis.Lay AbstractAutism spectrum disorder is a developmental disability affecting individuals across their entire lifespan. Autistic individuals have differences from nonautistic people (sometimes called allistic or neurotypical people) in social skills, communication, and atypical interests and/or repetitive behaviors. Applied behavior analysis is one of the first and most common interventions recommended for autistic children. However, autistic individuals argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed. This study examined the experiences of seven autistic individuals who received applied behavior analysis interventions as children to understand what autistic adults think about their applied behavior analysis interventions, how they feel about the applied behavior analysis interventions they received, and what recommendations autistic adults have for the future of applied behavior analysis. The findings include: Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis.
  Citation: Autism
  PubDate: 2022-08-24T05:03:52Z
  DOI: 10.1177/13623613221118216
Toward feeling, understanding, and caring: The development of empathy in
young autistic children
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  Authors: Boya Li, Els Blijd-Hoogewys, Lex Stockmann, Ilaria Vergari, Carolien Rieffe
  Abstract: Autism, Ahead of Print.
  Autistic people are often portrayed as lacking empathy. Yet they are not indifferent to others’ feelings. To advance our understanding of the early development of empathy in autistic children, this longitudinal study followed the development of four empathy abilities: emotion contagion, attention to others, emotion acknowledgment, and prosocial actions, in 1- to 6-year-old autistic children (N = 61; Mage = 55.49 months), in comparison with non-autistic peers (N = 145; Mage = 52.16 months). Once a year, for 4 consecutive years, children’s empathic reactions were evaluated by experimenters who acted out emotional episodes to elicit empathy in children, and by parents who filled out empathy questionnaires. We confirmed autistic children’s difficulty attending to others, acknowledging others’ emotions, and initiating prosocial actions. However, according to parents, they did not differ from non-autistic children in emotion contagion with others’ negative emotions. Notably, autistic children showed a greater increase in prosocial actions over time than their non-autistic peers. We discussed how to interpret these findings in light of the “double empathy problem,” and stressed the importance of removing the stereotypical view of autism. Furthermore, this study was among the first to show that autistic children have the potential to learn and to improve empathy skills.Lay abstractEmpathy is a highly valued human capacity. Yet, autistic people are often portrayed as lacking in empathy. Recent research, which views empathy as a complex construct emerging from multiple interrelated emotional and cognitive processes, argues that, although many autistic people do have difficulty understanding others’ emotions, and this may hinder them from responding to others in a prosocial manner, they are not indifferent to other people’s feelings. Hoping to contribute to a better understanding of the unique challenges that autistic children face in their empathy development, we followed the development of four empathy abilities: emotion contagion, attention to others, emotion acknowledgment, and prosocial actions, in 1- to 6-year-old autistic children, in comparison with non-autistic children. Once a year, for 4 consecutive years, children’s empathy abilities were evaluated by experimenters who acted out emotional episodes to provoke empathy in children, and by parents who filled out empathy questionnaires. We found that autistic children experienced indeed more difficulty attending to others, acknowledging others’ emotions, and initiating prosocial actions toward others. However, according to parents, they did not differ from their non-autistic peers in feeling along with others’ negative emotions. This indicates that it might not be the case that autistic children did not want to act empathetically toward others. Rather, they might not know how to do so. Notably, despite these difficulties, when looking at children’s developmental trajectories, autistic children showed similar improvements over time as non-autistic children. This provides evidence that autistic children have the potential to learn and to improve their empathy skills.
  Citation: Autism
  PubDate: 2022-08-24T05:01:52Z
  DOI: 10.1177/13623613221117955
Short-term low-intensity Early Start Denver Model program implemented in
regional hospitals in Northern Taiwan
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  Authors: Chung-Hsin Chiang, Tzu-Ling Lin, Hsiang-Yuan Lin, Suk Yin Ho, Ching-Ching Wong, Hsin-Chi Wu
  Abstract: Autism, Ahead of Print.
  The Early Start Denver Model is an evidence-based, comprehensive naturalistic developmental behavioral intervention for young and very young children with autism spectrum disorder. This interdisciplinary model is suitable for the Taiwanese public health system. In this study, we evaluated the effectiveness of an Early Start Denver Model program with adaptation, including a lower intensity, shorter duration, and delivery in general hospitals by multidisciplinary professionals. A quasi-experimental study with pre-, post-intervention, and 6-month follow-up was conducted. Forty-five young children with autism spectrum disorder, aged 2–4 years, were grouped into the Early Start Denver Model and control (the usual community treatment) groups. The Early Start Denver Model group received 6 months of one-on-one intervention for approximately 8–9 h per week. Compared with the control group, the Early Start Denver Model group showed greater improvements in overall development quotient and nonverbal development quotient from pre- to post-intervention, but these differences (a Group-by-Time interaction) did not sustain at the 6-month follow-up. Being mindful of some potential threats to internal validity associated with clinical trial designs and implementation, this study provides preliminary evidence to support the effectiveness of the Early Start Denver Model intervention in regional general hospital settings in the context of Han-Chinese-mainly culture.Lay AbstractThe Early Start Denver Model is an evidence-based early intervention program for young and very young children with autism. This interdisciplinary model is used by many types of professionals, such as psychologists, occupational therapists, speech pathologists, early child special educators, and paraprofessionals, as well as by parents. Most previous studies on the Early Start Denver Model were conducted in the West, and there are scarce studies on the topics of generalization in culture and countries outside the Western world. In this study, we evaluated the effect of the Early Start Denver Model with some adaptations, including a lower intensity, shorter duration, and delivery in regional general hospitals in Northern Taiwan. In total, 45 young children with autism, aged 2–4 years, were divided into the Early Start Denver Model and community-based control groups. The children in the Early Start Denver Model group received one-on-one intervention for approximately 8–9 h per week for 6 months. The results revealed that compared with the control group, the Early Start Denver Model group showed greater gains in overall development ability and nonverbal development ability from pre- to post-intervention. However, these differences did not sustain at the 6-month follow-up after the completion of the intervention. Being mindful of some caveats in trial designs, this study provides preliminary evidence to support the effectiveness of the Early Start Denver Model intervention in the regional general hospital settings in the context of Han-Chinese-mainly culture. Our findings can provide helpful information to stakeholders and policymakers of early intervention service systems for children with autism in Taiwan, as well as in Asian countries.
  Citation: Autism
  PubDate: 2022-08-24T04:59:12Z
  DOI: 10.1177/13623613221117444
Conducting caregiver focus groups on autism in the context of an
international research collaboration: Logistical and methodological
lessons learned in South Africa
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  Authors: Jessy Guler, Kearsley A Stewart, Petrus J de Vries, Noleen Seris, Nokuthula Shabalala, Lauren Franz
  Abstract: Autism, Ahead of Print.
  Most autism research has been conducted in high-income countries, with participants typically from White, upper-middle-income families. Given the disparities experienced by autistic individuals living in underserved communities globally, there is a critical need for research to include individuals from culturally, linguistically, socioeconomically, and geographically diverse backgrounds to understand their unique needs. Qualitative research has the potential to describe the “lived experience” of families historically underrepresented in the autism literature. Here we describe the logistical and methodological challenges of conducting focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. Logistical challenges included (1) recruitment, (2) response rate, and (3) resource access. Methodological challenges included (1) participant background and experiences, (2) interpersonal dynamics, and (3) research ethics. We present recommendations based on lessons learned to reduce these challenges and improve rigorous qualitative research practices in similar low-resource contexts.Lay abstractMost of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals’ life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts.
  Citation: Autism
  PubDate: 2022-08-24T04:57:32Z
  DOI: 10.1177/13623613221117012
Patterns of sensory processing in young children with autism: Differences
in autism characteristics, adaptive skills, and attentional problems
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  Authors: Girija Kadlaskar, Pin-Hsun Mao, Ana-Maria Iosif, David Amaral, Christine Wu Nordahl, Meghan Miller
  Abstract: Autism, Ahead of Print.
  Sensory processing differences are widely reported in autism. However, our understanding of sensory profiles in this population has been complicated due to the heterogeneous presentation of sensory symptoms. We addressed this by using latent profile analysis, allowing for the identification of more homogeneous sensory classes in a large cohort (n = 211 (52 females), 2–4 years) of autistic children using subscale scores from the Short Sensory Profile. Based on the patterns of both severity and sensory modality, four classes emerged: Moderate/Mixed (35.5%), Severe/Mixed (8.5%), Moderate/Broad (14.6%), and Low/Mixed (41.1%). While a subset of children displayed normative sensory-related behaviors, the majority showed a combination of both hypo- and hyper-reactivity across various sensory modalities. Subsequent analyses showed that the class characterized by Severe/Mixed sensory differences exhibited greater problems in a variety of areas such as social and adaptive skills and attention-deficit/hyperactivity disorder symptoms, whereas the Low/Mixed class showed overall fewer problems. Identification of homogeneous classes may be useful for neurophysiological/imaging studies focusing on studying underlying mechanisms linked with specific sensory patterns. These findings may help clinicians identify children with particular sensory profiles that might relate to other social, adaptive, or behavioral domains with potential implications for intervention.Lay abstractResearch has found differences in responding to various sensory stimuli among autistic individuals, which are associated with social and adaptive skills. However, our understanding of sensory profiles in autism has been complicated due to the variable presentation of sensory symptoms. One way to better understand variability in sensory symptoms is to use advanced statistical approaches, such as latent profile analysis, that allow for the identification of more similar sensory classes in otherwise variable groups. We used the Short Sensory Profile to identify homogeneous classes of sensory reactivity in autistic children based on both severity and modality and examined whether sensory classes differed in terms of autism characteristics, adaptive skills, and attention-deficit/hyperactivity disorder symptoms. Based on the pattern of both severity and modality, four sensory classes emerged and were named Moderate/Mixed (35.5%; probable-to-definite differences in all modalities except in movement sensitivity and low energy/weakness), Severe/Mixed (8.5%; definite sensory differences in all modalities except in low energy/weakness), Moderate/Broad (14.6%; probable-to-definite differences in all modalities), and Low/Mixed (41.1%; typical scores in most modalities with probable differences in taste/smell sensitivity, under-responsive/seeks sensation, and auditory filtering). The Severe/Mixed class exhibited greater problems in a variety of areas such as social, adaptive, and attention-deficit/hyperactivity disorder symptoms, whereas the Low/Mixed class showed overall fewer problems. This may provide insight for clinicians and researchers aiming to understand whether autistic children who exhibit distinct sensory patterns are more or less likely to also experience social, adaptive, and/or attention/behavior-related difficulties.
  Citation: Autism
  PubDate: 2022-08-24T04:53:55Z
  DOI: 10.1177/13623613221115951
Women seeking an autism diagnosis in Australia: A qualitative exploration
of factors that help and hinder
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  Authors: Sarah Murphy, Rebecca L Flower, Rachel Jellett
  Abstract: Autism, Ahead of Print.
  An autism diagnosis in adulthood can increase women’s self-compassion and inform appropriate supports. This study explored what helped and hindered autistic women when accessing an adulthood autism diagnosis in Australia. Ten autistic women diagnosed as adults within the past 5 years participated in a semi-structured interview about their experiences of accessing a diagnosis. Framework analysis was used to identify barriers and facilitators on person, provider and system levels. Person-level factors included women’s recognition of their autism, motivation, preparation, social support and approach during the assessment. Provider-level factors related to providers’ level of knowledge and skill in working with autistic women, as well as the women’s experience of being dismissed or misdiagnosed. Interactions between person- and provider-level factors highlighted that the diagnostic process is relational. System-level factors included the requirements of the diagnostic process (time, financial costs, and technology) and the nature of diagnostic criteria and assessment tools used. These factors provided the context in which person-level and provider-level factors operated. The experiences of participants highlight improvements that could be made to accessing an adulthood autism diagnosis for women in Australia, including provider knowledge of the heterogeneity of autism and the development of resources to help autistic women prepare for their diagnostic assessment.Lay abstractAn autism diagnosis can have a big impact on women and make it possible to access support. This study explored women’s experiences of being diagnosed with autism as an adult in Australia, to try to understand what was helpful (facilitators) and unhelpful (barriers) for them during this process. We interviewed 10 autistic women who had been diagnosed in the last 5 years. Framework analysis was used to understand the data. We wanted to understand barriers and facilitators relating to the individual participants, the professionals they saw and the system they went through for their diagnostic assessment. Women reported that being able to recognise they were autistic, being motivated, preparing for the assessment, having social support and unmasking to be themselves were helpful during the diagnostic process. They reported that having a knowledgeable diagnostician who made accommodations for their needs assisted them during the assessment process. When providers dismissed the participants when they first raised the possibility they were autistic, it delayed them in seeking an assessment. At the system level, the women in this study found some aspects of the healthcare system difficult to navigate, particularly costs and long waitlists. Some found the assessment tools used were not well suited to them. The experiences of the women in this study highlight improvements that could be made to accessing an adulthood autism diagnosis in Australia. These include improving provider knowledge of the varied presentation of autism and the development of resources to help autistic women prepare for their diagnostic assessment.
  Citation: Autism
  PubDate: 2022-08-18T05:11:45Z
  DOI: 10.1177/13623613221117911
Autistics working in academia: What are the barriers and facilitators'
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  Authors: Sandra C Jones
  Abstract: Autism, Ahead of Print.
  Autistic people are under-represented in university student populations, but their numbers are growing, and the barriers to their inclusion are being recognised. Outside of the student body, autistic people in academia are often overlooked, although this is starting to change with the growth in inclusive autism research. However, they remain absent from the academic literature, despite the evident synergies between autistic strengths and academic careers. This study explored the perceptions of 37 autistic academics from various disciplines: what are the positives of working in academia for autistic people, and what are the negatives' Participants reported many positive aspects of an academic career, including the fit with the strengths, characteristics and motivations of autistic people. However, they also noted barriers and challenges – social, environmental and structural – many of which could be addressed by greater awareness and acceptance of autism. Given the considerable benefits that autistic teachers and researchers bring to higher education, there is a clear need for universities and colleges to implement changes to the physical and social environment to make academia more inclusive.Lay AbstractAcademia appears to provide an ideal career option for autistic people: the opportunity to lock ourselves away in an ivory tower and utilise our extensive knowledge of a very specific topic. We know autistic people are underrepresented in postsecondary education, and there is a growing body of research on how to make universities more inclusive. What is missing from the literature is the voices of autistic people who have survived the university experience and gone on to become university teachers and researchers. Increasing the visibility of autistics in academia, and exploring the barriers and facilitators they experience in an academic career, is important to raise the aspirations of future university students and graduates. This study included 37 autistic academics from various disciplines and countries, exploring their perceptions of the positive and negative aspects of being an autistic in academia.
  Citation: Autism
  PubDate: 2022-08-12T06:44:27Z
  DOI: 10.1177/13623613221118158
‘Autistic person’ or ‘person with autism’' Person-first
language preference in Dutch adults with autism and parents
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  Authors: Riley Buijsman, Sander Begeer, Anke M Scheeren
  Abstract: Autism, Ahead of Print.
  The language used to refer to autism has been a topic of ongoing debate. Research in English-speaking countries indicated an overall preference for identity-first language (‘autistic person’) among autistic adults rather than person-first language (‘person with autism’). We examined terminology preference in Dutch autistic adults (n = 1026; 16–84 years; 57% women) and parents of autistic children (n = 286) via an online survey. A majority of self-reporting adults with autism (68.3%) and parents (82.5%) demonstrated a person-first language preference. A younger age, higher IQ and more autistic traits predicted a relatively stronger identity-first language preference in autistic adults. We conclude that language and culture may impact terminology preference of adults with autism and parents. For now, we advocate to use a mix of person-first language and identity-first language in academic papers to cover the full range of preferences.Lay abstractThere are different words to describe people with an autism diagnosis. For instance, we can put the person before autism (e.g. ‘person with autism’), or we can put autism before the person (e.g. ‘autistic person’). Previous research showed that autistic adults in English-speaking countries generally liked it better when autism is placed before the person. Yet, people also greatly differ in the words they like and dislike. In this study, we examined word preference in Dutch autistic adults (n = 1026; 16–84 years; 57% women) and parents of autistic children (n = 286). Via an online questionnaire, we asked our participants to select one term for autistic people that they liked best. The results showed that most adults with autism (68.3%) and parents (82.5%) preferred to put the person before autism. Younger adults, with a higher intelligence, and with more autistic traits, were a bit more likely to put autism before the person. We conclude that there are large differences in the words that people prefer. Because we found different results in our Dutch participants compared to participants in English-speaking countries, we think that the Dutch language or culture may also play a role in word preference. For now, we advise autism researchers to use both person-first and autism-first language.
  Citation: Autism
  PubDate: 2022-08-12T05:25:05Z
  DOI: 10.1177/13623613221117914
Mobile and online consumer tools to screen for autism do not promote
equity
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  Authors: Benjamin W Sanders, Steven Bedrick, Sarabeth Broder-Fingert, Shannon A Brown, Jill K Dolata, Eric Fombonne, Julie A Reeder, Luis Andres Rivas Vazquez, Plyce Fuchu, Yesenia Morales, Katharine E Zuckerman
  Abstract: Autism, Ahead of Print.
  Limited access to screening and evaluation for autism spectrum disorder in children is a major barrier to improving outcomes for marginalized families. To identify and evaluate available digital autism spectrum disorder screening resources, we simulated web and mobile app searches by a parent concerned about their child’s likelihood of autism spectrum disorder. Included digital autism spectrum disorder screening tools (a) were on Internet or mobile app; (b) were in English; (c) had a parent user inputting data; (d) assigned likelihood category to child
  Citation: Autism
  PubDate: 2022-08-12T05:23:10Z
  DOI: 10.1177/13623613221114280
Psychiatry training in autism spectrum disorder and intellectual
disability: Ongoing gaps and emerging opportunities
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  Authors: Natasha Marrus, Kathleen A Koth, Jessica A Hellings, Rachel McDonald, McLeod Frampton Gwynette, Rebecca Muhle, William D Lohr, RA Vasa
  Abstract: Autism, Ahead of Print.
  Autism spectrum disorder and intellectual disability are associated with psychiatric comorbidities, yet a 2009 study of US child and adolescent psychiatry program directors indicated that psychiatry residents receive insufficient training in autism spectrum disorder/intellectual disability. This follow-up study surveyed child and adolescent psychiatry and general psychiatry program directors to assess (1) the current extent of residency training in autism spectrum disorder/intellectual disability, (2) program director perceptions of educational topics and resident competency in autism spectrum disorder/intellectual disability, and (3) preferred resources to strengthen autism spectrum disorder/intellectual disability training. As in 2009, many child and adolescent psychiatry program directors reported few lecture hours, although current child and adolescent psychiatry residents saw slightly more patients with autism spectrum disorder but not intellectual disability. General psychiatry program directors reported fewer lecture hours in autism spectrum disorder/intellectual disability and fewer patients with autism spectrum disorder than child and adolescent psychiatry program directors. Both child and adolescent psychiatry and general psychiatry program directors recognized the importance of a range of educational topics in autism spectrum disorder/intellectual disability. Child and adolescent psychiatry program directors reported higher resident competency, and lecture hours and patients seen moderately correlated with resident competency. Program directors indicated that online videos and other resources would help improve autism spectrum disorder/intellectual disability training in their programs. Collectively, these findings suggest minimal improvements in autism spectrum disorder/intellectual disability training over the past decade and highlight the urgent need to advance psychiatry training in this field through dissemination of resources.Lay abstractChildren, adolescents, and adults with autism spectrum disorder and intellectual disability experience high rates of co-occurring psychiatric conditions throughout their lifetime. However, there is a shortage of psychiatrists to treat these populations. We evaluated how much education psychiatrists-in-training receive on how to care for individuals with autism spectrum disorder/intellectual disability. We found that in many psychiatry programs, residents receive limited training experiences in autism spectrum disorder/intellectual disability involving lectures and patient contact and that psychiatry program directors would benefit from more resources to strengthen education in autism spectrum disorder/intellectual disability.
  Citation: Autism
  PubDate: 2022-08-03T10:08:46Z
  DOI: 10.1177/13623613221112197
Leveraging technology to make parent training more accessible: Randomized
trial of in-person versus online executive function training for parents
of autistic children
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  Authors: Lauren Kenworthy, Deb Childress, Anna Chelsea Armour, Alyssa Verbalis, Anqing Zhang, Mary Troxel, Rebecca Handsman, Kelly Kocher, Yetta Myrick, Monica Werner, Katie C Alexander, Lynn Cannon, Laura G Anthony
  Abstract: Autism, Ahead of Print.
  This randomized trial compared the first online parent training program for an evidence-supported executive function intervention for autism to in-person parent training with the same dose and content. Parents of autistic children (8–12 years-old; Full Scale IQ above 70) were randomized to in-person (n = 51) or online (n = 46) training. Training acceptability and feasibility were rated highly by parents, without significant differences between groups. The completion rate was lower for parents in the online versus the in-person training condition, but neither the total time spent with training materials, nor parent and child outcomes differed by condition. Parents reported that training resulted in a reduction in caregiver strain (Cohen’s d = 0.66) and modest improvements in child flexibility, emotional control and global EF, but not planning and organization. Dose of parent training had a significant positive effect on child planning and organization problems. These findings did not support the hypothesized superiority of online to in-person training, but they did indicate online is as effective as in-person training at helping parents learn to improve their autistic children’s EF abilities and reduce their own experience of parenting strain. Implications included increased access to training for parents who experience barriers to receiving in-person care.Trial Registration: clinicaltrials.gov Identifier: NCT02708069Lay AbstractThis study compared the first online parent training program for executive function intervention for autism to in-person parent training on the same content. Participants were parents of autistic children, who were between 8 and 12 years of age and did not have intellectual disability. Parents were randomized to the in-person (n = 51) or online (n = 46) training conditions. Both trainings were developed with stakeholder (parents and autistic people) guidance. In this trial, most parents reported that they liked both trainings and that they were able to implement what they learned with their children. Parents in both groups spent equivalent amounts of time (about 8 hours) with the training materials, but while 94% of parents in the in-person training attended both parent trainings, only 59% of parents in the online group completed all 10 online modules. Parents reported that it was difficult to stay motivated to complete the online trainings over the 10-week trial. Parent and child outcomes did not differ significantly between the groups. Overall, parents reported that the trainings resulted in a reduction in their own parenting strain and improvements in their child’s flexibility, emotional control, and global executive function, but not planning and organization. These findings indicated brief in-person and online training can help parents learn to support and improve their autistic children’s executive function abilities, reducing their own experience of parenting strain. The finding that the online training was equivalent to the in-person trainings is important because it is accessible to parents who encounter barriers to in-person care.
  Citation: Autism
  PubDate: 2022-08-02T09:56:30Z
  DOI: 10.1177/13623613221111212
Parental experience of parent-mediated intervention for children with ASD:
A systematic review and qualitative evidence synthesis
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  Authors: Lucie Jurek, Kathy Leadbitter, Bruno Falissard, Cyrille Colin, Sandrine Touzet, Marie-Maude Geoffray
  Abstract: Autism, Ahead of Print.
  While the effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented, information on the experience of parents involved in parent-mediated interventions is limited. We performed a systematic review with qualitative evidence synthesis to explore the experience of parent-mediated interventions in parents of children with autism spectrum disorder. PubMed, Scopus, PsycINFO, CINAHL, and Sociology Collection were searched from the date of their creation until 25 February 2022. Qualitative studies reporting parents’ experience of parent-mediated interventions were included. Two independent reviewers assessed the risk of bias. The findings of the selected studies were extracted and synthesized using the meta-aggregation method. The results are reported according to PRISMA and ENTREQ guidelines. A total of 23 studies were synthesized representing 345 participants. We found 34 categories that were summarized in four synthesized themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. Parents’ experience of parent-mediated interventions in autism spectrum disorder is balanced between positive outcomes for them and their child, emotional struggles, and some difficulties in implementing parent-mediated interventions. Based on these results, we propose new ways to improve implementation of parent-mediated interventions and research in the field.Lay abstractThe effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented but information on the experience of parents involved in parent-mediated interventions is limited.This study is the first synthesis of evidence concerning the experience of parents involved in parent-mediated interventions. It synthesizes the voice of 345 parents across the world into four general themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child.The findings of our study provide evidence that parent-mediated interventions should be adapted to the needs of each family. Specific care and support should be offered to parents in addition to parent-mediated interventions. Our study, however, highlights which outcomes are important to parents and should be considered in future studies.
  Citation: Autism
  PubDate: 2022-07-28T11:38:03Z
  DOI: 10.1177/13623613221112204
Mental health service availability for autistic youth in New York City: An
examination of the developmental disability and mental health service
systems
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  Authors: Paige E Cervantes, Greta R Conlon, Dana EM Seag, Michael Feder, Qortni Lang, Samantha Meril, Argelinda Baroni, Annie Li, Kimberly E Hoagwood, Sarah M Horwitz
  Abstract: Autism, Ahead of Print.
  Psychiatric conditions are common in autism; however, a multitude of barriers exist in accessing community-based mental health care for autistic youth. Perhaps the first and most formidable barrier is identifying a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. These systems typically function independently of one another, contributing to the complexity of accessing services. To identify gaps caused by New York’s multisystem care model for autistic youth, and as part of a larger quality improvement initiative to advance suicide risk management in several New York City emergency departments, we conducted a telephone survey to identify outpatient mental health service availability for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state’s mental health and developmental disability systems. Results demonstrated that while a greater proportion of clinics in the mental health system compared with agencies in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), there is remarkably limited service availability overall. Efforts to reduce these care inequities through policy reform and improving workforce capacity are urgently needed.Lay abstractAutistic children and adolescents experience high rates of co-occurring mental health conditions, including depression and suicidality, which are frequently identified by stakeholders as treatment priorities. Unfortunately, accessing community-based mental health care is often difficult for autistic youth and their families. The first obstacle families confront is finding a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. The mental health and developmental disability systems are two of the most commonly accessed, and previous work has shown there is often confusion over which of these systems is responsible for providing mental health care to autistic individuals. In this study, we conducted a telephone survey to determine the availability of outpatient mental health services for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state’s mental health and developmental disability systems. Results showed that while a greater percentage of clinics in the mental health system compared with in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), many more did not offer care to autistic youth and there were very few options overall. Therefore, it is important that changes to policy are made to increase the availability of services and that mental health care providers’ knowledge and confidence in working with autistic youth are improved.
  Citation: Autism
  PubDate: 2022-07-27T08:54:31Z
  DOI: 10.1177/13623613221112202
A comparison of the content and nature of worries of autistic and
neurotypical young people as they transition from school
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  Authors: Jack Waldman, Ann McPaul, Andrew Jahoda
  Abstract: Autism, Ahead of Print.
  The prevalence of anxiety is higher in autistic young people, compared to neurotypical youths. However, the nature of worry in autistic young people is under-researched. Transition from secondary school is a time of change and can be challenging for autistic adolescents. This project explored the content and emotional impact of worries in neurotypical and autistic young people during transition. Twenty-two autistic people and 22 neurotypical people, aged 16–18, were recruited from mainstream schools. Participants completed a novel task to identify and explore the nature of their main worries. The participants’ worry frequency and distress levels in relation to their most salient concerns, and their anxiety levels, were measured. Content analysis highlighted similarities and differences between the two groups’ worries. Both groups worried about failure and their prospects of further education. Autistic people were more concerned about change and friendship, whereas more salient worries for neurotypical individuals were about work and money. Autistic people were more distressed by their worries than neurotypical individuals. Findings regarding the nature of autistic young people’s worries may help inform interventions. Moreover, asking autistic people about their worries as they leave school may help to address their concerns, ease their transition and reduce distress.Lay abstractAutistic young people experience higher levels of anxiety than neurotypical young people. Having worries is part of feeling anxious. This makes it surprising that very little research has looked at the kind of worries autistic young people have. Leaving school, in particular, can be a worrying time for young people. Twenty-two autistic young people and 22 neurotypical young people who were at mainstream secondary schools agreed to take part in the study. They were between 16 and 18 years of age. They were asked to sort through a series of pictures, showing the different types of worries that young people might experience. They were then asked to pick out their four main worries and say how much they thought about each worry and how upset the worry made them. They also completed a questionnaire about their level of anxiety. There were similarities and differences between the autistic and neurotypical young people’s worries. Both groups worried about failing and how they might get on in further education. The autistic young people were more worried about change and friendships. Work and money were particular concerns for the neurotypical young people. The autistic young people said that they found their worries more upsetting than the neurotypical young people. Having a better understanding of autistic young people’s worries at important points in their lives might mean that more timely help and support can be given to them. Simply knowing what to ask young autistic school leavers about may help them to express unspoken concerns.
  Citation: Autism
  PubDate: 2022-07-27T08:52:27Z
  DOI: 10.1177/13623613221111313
Mental representations of speech and musical pitch contours reveal a
diversity of profiles in autism spectrum disorder
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  Authors: Li Wang, Jia Hoong Ong, Emmanuel Ponsot, Qingqi Hou, Cunmei Jiang, Fang Liu
  Abstract: Autism, Ahead of Print.
  As an information-bearing auditory attribute of sound, pitch plays a crucial role in the perception of speech and music. Studies examining pitch processing in autism spectrum disorder have produced equivocal results. To understand this discrepancy from a mechanistic perspective, we used a novel data-driven method, the reverse-correlation paradigm, to explore whether the equivocal findings in autism spectrum disorder have high-level origins in top–down comparisons of internal mental representations of pitch contours. Thirty-two Mandarin-speaking autistic individuals and 32 non-autistic individuals undertook three subtasks testing mental representations of pitch contours in speech, complex tone and melody, respectively. The results indicate that while the two groups exhibited similar representations of pitch contours across the three conditions, the autistic group showed a significantly higher intra-group variability than the non-autistic group. In addition, the two groups did not differ significantly in internal noise, a measure of the robustness of participant responses to external variability, suggesting that the present findings translate genuinely qualitative differences and similarities between groups in pitch processing. These findings uncover for the first time that pitch patterns in speech and music are mentally represented in a similar manner in autistic and non-autistic individuals, through domain-general top–down mechanisms.Lay abstractAs a key auditory attribute of sounds, pitch is ubiquitous in our everyday listening experience involving language, music and environmental sounds. Given its critical role in auditory processing related to communication, numerous studies have investigated pitch processing in autism spectrum disorder. However, the findings have been mixed, reporting either enhanced, typical or impaired performance among autistic individuals. By investigating top–down comparisons of internal mental representations of pitch contours in speech and music, this study shows for the first time that, while autistic individuals exhibit diverse profiles of pitch processing compared to non-autistic individuals, their mental representations of pitch contours are typical across domains. These findings suggest that pitch-processing mechanisms are shared across domains in autism spectrum disorder and provide theoretical implications for using music to improve speech for those autistic individuals who have language problems.
  Citation: Autism
  PubDate: 2022-07-18T09:39:52Z
  DOI: 10.1177/13623613221111207
Alexithymia and intolerance of uncertainty predict somatic symptoms in
autistic and non-autistic adults
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  Authors: Fionnuala Larkin, Brianna Ralston, Sophie Jayne Dinsdale, Sakura Kimura, Marianna Emma Hayiou-Thomas
  Abstract: Autism, Ahead of Print.
  Autistic people experience heightened rates of physical health problems but may also experience elevated levels of somatic symptoms (e.g. pain, headache, gastrointestinal symptoms) due to psychological factors which are common in autism. This online study sought to compare rates of somatic symptoms (Patient Health Questionnaire-15) in older adolescents and adults who were autistic (n = 51), non-autistic (n = 119) and who suspected they were autistic (n = 32), while controlling for health conditions. We investigated psychological risk factors that may predispose individuals to experience somatic symptoms, including alexithymia (General Alexithymia Factor Score), interoception (Body Awareness Questionnaire) and intolerance of uncertainty (Intolerance of Uncertainty Scale). Diagnosed autistic individuals had higher rates of alexithymia and intolerance of uncertainty. We also found higher somatic symptoms in diagnosed autistic individuals, controlling for mental and physical health. However, hierarchical regression showed that somatic symptoms were predicted by physical and mental health conditions, female gender, alexithymia, and intolerance of uncertainty, regardless of autism status. The results suggest that autistic and non-autistic individuals experience more bodily discomfort in part due to gender, physical and mental health, alexithymia, and difficulty tolerating uncertainty. Implications for mental and physical health care in autism are discussed.Lay abstractAutistic people have more physical health problems than non-autistic people. We were interested in whether autistic people experience more discomfort in their bodies than non-autistic people and whether certain psychological traits contribute to that. A survey was completed online by older adolescents and adults, 51 of whom were autistic, 32 of whom thought they might be autistic but were not diagnosed and 119 who were not autistic. They completed measures of somatic symptoms (daily experience of pain, discomfort, dizziness), alexithymia (difficulty identifying and expressing feelings), interoception (how much people are aware of their bodies) and intolerance of uncertainty (how people handle doubt or uncertainty), and reported any physical or mental health conditions. We found that the autistic participants had more physical and mental health conditions than the non-autistic participants, but even when we took account of this, they experienced higher levels of somatic symptoms. We looked at which psychological factors influenced levels of somatic symptoms across the whole sample, and found that alexithymia, intolerance of uncertainty, having physical health problems, being female and the number of mental health conditions predicted somatic symptoms, while interoception and autism diagnosis did not. The findings suggest that people may be more likely to experience physical discomfort if they are female, and have difficulty identifying and expressing feeling and difficulty tolerating doubt. As these psychological factors are more prominent in autism, we think this is important for physical and mental health providers to know about, so that these psychological factors can be considered when assessing and treating autistic people.
  Citation: Autism
  PubDate: 2022-07-16T05:36:51Z
  DOI: 10.1177/13623613221109717
Relationships between alexithymia, interoception, and emotional empathy in
autism spectrum disorder
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  Authors: Christiana D Butera, Laura Harrison, Emily Kilroy, Aditya Jayashankar, Michelle Shipkova, Ariel Pruyser, Lisa Aziz-Zadeh
  Abstract: Autism, Ahead of Print.
  Some studies suggest that individuals with autism spectrum disorder have reduced emotional empathy while others do not. The presence of co-occurring alexithymia in autism spectrum disorder and differences in interoception have been associated with reductions in empathic ability. To fully explore the relationships between interoception, alexithymia, and emotional empathy, we collected self-report and interview data in 35 youth with autism spectrum disorder and 40 typically developing controls (ages 8–17 years). The autism spectrum disorder sample had increased alexithymia and physiological hyperarousal compared to typically developing controls, but there were no group differences in interoception or emotional empathy. Alexithymia severity correlated with higher personal distress in both groups and with lower empathic concern in the autism spectrum disorder group. Within the autism spectrum disorder group, higher incidence of reports of bodily sensation when describing emotional experience correlated with lower personal distress and lower alexithymia. In addition, although empathic concern was negatively correlated with alexithymia in the autism spectrum disorder group, across groups, the alexithymia hypothesis was supported in only the personal distress domain of emotional empathy. These results suggest emotional empathy; personal distress, in particular, is not intrinsically impaired in autism spectrum disorder.Lay abstractEmpathy, the ability to understand and share the emotions of others, is a necessary skill for social functioning and can be categorized into cognitive and emotional empathy. There is evidence to suggest that individuals with autism spectrum disorder have difficulties with cognitive empathy, the ability to imagine how another person is thinking or feeling. However, it is unclear if individuals with autism spectrum disorder struggle with emotional empathy, the ability to share and feel emotions others are experiencing. Self-report and interview data were collected to explore the relationships between interoception (individuals’ self-reported awareness of sensation from their body such as thirst, heartbeat, etc.), alexithymia (an individual’s ability to describe and distinguish between their own emotions), and emotional empathy in 35 youth with autism spectrum disorder and 40 typically developing youth. Greater personal distress to others’ emotions and greater difficulty describing and recognizing self-emotions were associated with reporting fewer physical sensations in the body when experiencing emotion in the autism spectrum disorder group. The results of this study suggest that while autism spectrum disorder youth with concomitant alexithymia may experience emotional empathy differently, it should not be characterized as an absence of a capacity for emotional empathy.
  Citation: Autism
  PubDate: 2022-07-14T10:13:45Z
  DOI: 10.1177/13623613221111310
Non-pharmacological interventions for autistic children: An umbrella
review
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  Authors: David Trembath, Kandice Varcin, Hannah Waddington, Rhylee Sulek, Cathy Bent, Jill Ashburner, Valsamma Eapen, Emma Goodall, Kristelle Hudry, Jacqueline Roberts, Natalie Silove, Andrew Whitehouse
  First page: 275
  Abstract: Autism, Ahead of Print.
  The breadth of available non-pharmacological interventions for autistic children, with varying evidence for efficacy summarised in multiple systematic reviews, creates challenges for parents, practitioners, and policymakers in navigating the research evidence. In this article, we report the findings of an umbrella review of 58 systematic reviews of non-pharmacological interventions for autistic children (aged 0–12 years). Positive therapeutic effects were identified for Behavioural interventions, Developmental interventions, Naturalistic Developmental Behavioural Interventions, Technology-based interventions, and Cognitive Behaviour Therapy across several child and family outcomes. Positive effects for certain practices within Sensory-based interventions and ‘other’ interventions were limited to select child and family outcomes. Both inconsistent and null intervention effects were found for Treatment and Education of Autistic and related Communication-handicapped Children, and Animal-assisted interventions across outcomes. The possible influence of child (chronological age, core autism characteristics, and related skills) and delivery (agent, mode, format, and amount) characteristics on intervention effects was rarely examined, and inconsistent where reported. Twenty-seven systematic reviews (47%) were rated as ‘high’ quality. Few systematic reviews examined children’s participation and quality of life or adverse effects. The findings highlight the need for individualised evidence-based decision-making when selecting interventions for autistic children.Lay abstractWhat is already known about the topic'The delivery of evidence-based interventions is an important part of the clinical pathway for many autistic children and their families. However, parents, practitioners, and policymakers face challenges making evidence informed decisions, due to the wide variety of interventions available and the large, and often inconsistent, body of evidence regarding their effectiveness.What this paper adds'This is a comprehensive umbrella review, also known as a ‘review of reviews’, which examined the range of interventions available, the evidence for their effectiveness, and whether effects were influenced by factors relating to individual children (e.g. chronological age, core autism characteristics, and related skills) or the ways interventions were delivered (by whom and in what setting, format, mode, and amount). There was evidence for positive therapeutic effects for some, but not all, interventions. No single intervention had a positive effect for all child and family outcomes of interest. The influence of child and delivery characteristics on effects was unclear.Implications for practice, research, and policyThe findings provide parents, practitioners, and policymakers with a synthesis of the research evidence to inform decision-making and highlight the importance of individualised approaches in the absence of clear and consistent evidence. The findings also highlight the need to improve consistency and completeness in reporting of research studies, so that the same questions may be answered more comprehensively in the future.
  Citation: Autism
  PubDate: 2022-09-09T05:38:47Z
  DOI: 10.1177/13623613221119368
Longitudinal impact of parents’ discrimination experiences on
children’s internalizing and externalizing symptoms: A 2-year study of
families of autistic children
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  Authors: Kevin Ka Shing Chan, Donald Chi Kin Leung, Winnie Tsz Wa Fung
  First page: 296
  Abstract: Autism, Ahead of Print.
  The present study examined the longitudinal associations of parents’ discrimination experiences with children’s internalizing and externalizing symptoms among families of autistic children and tested whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents’ discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children’s internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents’ discrimination experiences at T1 had significant indirect effects on children’s internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Theoretically, our findings elucidate how parents’ discrimination experiences may longitudinally heighten children’s internalizing and externalizing symptoms by adversely affecting parental well-being and parent–child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents’ discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development.Lay abstractAlthough many parents of autistic children are routinely discriminated against, the potential impact of this discrimination on their parenting processes and child-rearing outcomes has seldom been investigated. The present study addressed this gap in the literature by examining the longitudinal associations of parents’ discrimination experiences with children’s internalizing and externalizing symptoms among families of autistic children and testing whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents’ discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children’s internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents’ discrimination experiences at T1 had significant indirect effects on children’s internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Our findings have important theoretical contributions and significant practical implications. Theoretically, our findings elucidate how parents’ discrimination experiences may longitudinally heighten children’s internalizing and externalizing symptoms by adversely affecting parental well-being and parent–child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents’ discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development.
  Citation: Autism
  PubDate: 2022-05-19T04:37:19Z
  DOI: 10.1177/13623613221093110
Examining clinical characteristics of autism and links with parent
perceptions of sibling relationship quality
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  Authors: Alana J McVey, Quinn Liu, Saashi A Bedford, Anat Zaidman-Zait, Peter Szatmari, Isabel M Smith, Tracy Vaillancourt, Lonnie Zwaigenbaum, Teresa Bennett, Eric Duku, Mayada Elsabbagh, Stelios Georgiades, Connor M Kerns
  First page: 309
  Abstract: Autism, Ahead of Print.
  Research regarding autistic children’s sibling relationship quality is mixed, although some literature suggests poorer quality compared to children with other disabilities or who are neurotypical. Little is known about how the clinical characteristics of autistic children relate to parent perceptions of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum, ages 10–11 years, from an ongoing longitudinal study. Hierarchical multiple regressions tested the extent to which children’s autism symptoms, behavioral difficulties, and communication abilities related to four domains of parent-rated sibling relationship quality. We also examined communication ability as a moderator of the effect of behavioral difficulties on parent-rated sibling relationship quality. More severe autism symptoms were associated with lower levels of conflict and rivalry, whereas higher communication ability was related to more relative status/power, but also conflict. Communication ability moderated the effect of behavioral difficulties such that behavioral difficulties were more closely associated with less warmth/closeness when children had weaker communication skills; behavioral difficulties were not significantly associated with other domains of sibling relationship quality. Findings underscore the importance of considering clinical characteristics and multiple domains of relationship quality to better understand how parents view the relationships between autistic children and their siblings.Lay abstractSibling relationship quality is important for the well-being of children on the autism spectrum and their siblings. Little is known, however, about how varied behavior and abilities of children on the autism spectrum may be associated with parent perceptions of domains of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum (ages 10–11 years), participating in an ongoing longitudinal study. We looked at how three clinical characteristics (autism symptoms, behavioral difficulties, and communication ability) related to four areas of parent-reported sibling relationship quality (warmth/closeness, conflict, relative status/power, and rivalry). We also examined whether the strength of the association between behavioral difficulties and parent-reported sibling relationship quality was influenced by communication ability. We found that more severe autism symptoms were associated with less conflict and rivalry, and higher communication ability was associated with more relative status/power. We also found that children on the autism spectrum with more behavioral difficulties and weaker communication ability had less warmth/closeness in their sibling relationships. Our findings highlight that it is important to consider autism symptoms, behavioral difficulties, and communication ability, as well as multiple domains of relationship quality, to better understand how parents view the relationships between autistic children and their siblings. Clinically, methods for improving sibling relationships may include teaching conflict resolution strategies to children on the autism spectrum with stronger communication abilities and their siblings, and fostering sibling connection for those with lower communication abilities.
  Citation: Autism
  PubDate: 2022-05-05T06:53:30Z
  DOI: 10.1177/13623613221094672
Autism as a difference or a disorder' Exploring the views of
individuals who use peer-led online support groups for autistic partners
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  Authors: Laura Foran Lewis
  First page: 321
  Abstract: Autism, Ahead of Print.
  Approximately one-third of autistics report intimate relationship experience, but few studies have explored neuromixed relationships from the perspectives of non-autistic partners. Non-autistic partners increasingly use peer-led online groups to seek support. The purpose of this study was to capture a theory that reflects the basic social experience of individuals who use these support groups using classic Glaserian grounded theory methodology. Online interviews were conducted with 162 non-autistics who believed that they were in neuromixed relationships. Data were concurrently collected and analyzed using constant comparative analysis. Participants described varying views of autism, from a difference to a disorder, which defined the context of their relationships. Five relationship profiles emerged—mutual partnership: viewed partners as = companionship: viewed partners as friends but lacked a deeper connection; caregiving: viewed partners as dependents and compared relationships to parent–child dyads; detachment: viewed relationships as broken beyond repair and isolated selves from partners; and discriminatory: believed and circulated negative generalizations about autism. Many participants who were dissatisfied in their relationships shared that their partners were not formally evaluated and did not self-identify as autistic. Future research should explore ways that autism labels are (mis)applied by the general public based on negative stereotypes about autism.Lay abstractIndividuals who use peer-led online support groups for partners of autistics describe diverse views of autism, with some describing autism as a difference and others describing it as a disorder. I conducted online interviews with 162 non-autistics who believed they were in relationships with autistics and who participated in online support groups on social media. I analyzed their responses by constantly comparing each interview to previous interviews to develop a theory about their social experiences. As many as one-third of autistics participate in romantic relationships, and many of their partners seek support through groups on social media. Few studies explore what it is like to be a non-autistic person who is in a relationship with an autistic person. The way that participants viewed autism influenced the way that they viewed themselves, their partners, and their relationships. Many participants who were dissatisfied in their relationships shared that they believed their partners were autistic, but their partners had never been formally evaluated and did not self-identify as autistic. Future research should explore ways that autism labels are (mis)applied by the general public based on negative stereotypes about autism.
  Citation: Autism
  PubDate: 2022-06-02T09:36:41Z
  DOI: 10.1177/13623613221097850
Predictors of expert providers’ familiarity with intervention practices
for school- and transition-age youth with autism spectrum disorder
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  Authors: Chelsea M Cooper, Tamara Rosen, Hyunsik Kim, Nicholas R Eaton, Elizabeth Cohn, Amy Drahota, Lauren J Moskowitz, Matthew D Lerner, Connor M Kerns
  First page: 331
  Abstract: Autism, Ahead of Print.
  Understanding the types of intervention practices familiar to transdisciplinary autism spectrum disorder providers may be critical to characterize and optimize “usual care” for common clinical concerns (e.g. internalizing, externalizing, and social challenges) among school- and transition-age autistic youth. We assessed if there is an underlying factor structure to expert providers’ familiarity with such practices, and if characteristics of experts (discipline, years’ experience, and school setting) and/or their clients (age and intellectual disability) predicted these factors. Fifty-three expert providers rated their familiarity with 55 practices via an online Delphi poll. Exploratory structural equation modeling identified latent factors of familiarity, which were regressed onto provider and client variables to identify predictors. Four factors emerged: two approaches (cognitive and behavioral) and two strategies (engagement and accessibility). Cognitive approaches were associated with practicing outside school settings and treating clients without intellectual disability, behavioral approaches with practicing in schools and the disciplines of clinical psychology and behavior analysis, engagement strategies with practicing outside school settings, and accessibility strategies with more years in practice. Findings suggest expert transdisciplinary autism spectrum disorder providers are familiar with many of the same approaches and that differences in knowledge are predicted by their discipline, treatment setting, experience, and work with youth with intellectual disabilities.Lay abstractSchool-age children, adolescents, and young adults with autism spectrum disorder encounter many different types of providers in their pursuit of treatment for anxiety, behavior problems, and social difficulties. These providers may all be familiar with different types of intervention practices. However, research has not yet investigated patterns in expert providers’ familiarity with different practices nor how these patterns are related to the characteristics of providers (years in practice, academic discipline, setting) and the youth (age and intellectual disability) they typically support. A panel of 53 expert transdisciplinary providers rated their familiarity with 55 intervention practices (derived from research and expert nominations) via an online Delphi poll. Advanced statistical methods were used to identify types of intervention practices with which providers were familiar, which included two approaches (cognitive and behavioral) and two strategies (engagement and accessibility). Providers who practiced outside a school setting or treated clients without intellectual disability were more familiar with cognitive approaches. Clinical psychologists, behavior analysts, and school-based providers were more familiar with behavioral approaches. Providers practicing outside school settings were also more familiar with engagement strategies, and providers with more years in practice were more familiar with accessibility strategies. These results may help families and researchers to better anticipate how services may vary depending on the types of autism spectrum disorder providers seen and work to reduce disparities in care that may result.
  Citation: Autism
  PubDate: 2022-06-20T09:39:41Z
  DOI: 10.1177/13623613221100787
Consensus statements on optimal adult post-autism diagnosis support and
services: Delphi process following a UK survey of autistic adults,
relatives and clinicians
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  Authors: Sarah Wigham, Barry Ingham, Ann Le Couteur, Colin Wilson, Ian Ensum, Jeremy R Parr
  First page: 344
  Abstract: Autism, Ahead of Print.
  Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally.Lay AbstractResearch has identified types of support helpful to autistic people, for example, physical and mental health interventions, psycho-education, peer support, developing positive identities and affiliation with social groups. However, accessing suitable post-autism diagnosis support and services is extremely difficult. We asked autistic adults, relatives and clinicians about their experiences of receiving and delivering post-autism diagnosis support/services. In Stage 1, 343 autistic adults and 45 relatives completed a survey. They answered questions about their experiences of UK autism post-diagnosis support/services for adults within 12 months after receiving a diagnosis. Thirty-five clinicians completed a similar survey. Just over half of adults and relatives said there was a follow-up appointment or discussion about support after diagnosis. Fewer than 40% received any support/services in 12 months after diagnosis. We used information from the surveys to create 11 statements describing characteristics of appropriate adult post-autism diagnosis support/services. In Stage 2, we asked clinicians for their views on the statements – they agreed with all of them. For example, those adults are offered an additional follow-up meeting after diagnosis and have access to mental and physical health services. We shared results with autistic adults, relatives and clinicians at two events. Some autistic adults, relatives and clinicians were positive about post-autism diagnosis support/services. However, they described many areas for improvement. The study findings can be used to define, develop and improve the types of adult post-diagnosis support services.
  Citation: Autism
  PubDate: 2022-06-07T07:22:20Z
  DOI: 10.1177/13623613221097502
Learning from the experts: Evaluating a participatory autism and universal
design training for university educators
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  Authors: TC Waisman, Zachary J Williams, Eilidh Cage, Siva Priya Santhanam, Iliana Magiati, Patrick Dwyer, Kayden M Stockwell, Bella Kofner, Heather Brown, Denise Davidson, Jessye Herrell, Stephen M Shore, Dave Caudel, Emine Gurbuz, Kristen Gillespie-Lynch
  First page: 356
  Abstract: Autism, Ahead of Print.
  Autistic students experience strengths and challenges that can impact their full inclusion in higher education, including stigma. A participatory team of autistic and non-autistic scholars developed an autism and universal design (UD) training. This participatory approach centered the voices of autistic collaborators in training design and evaluation. Ninety-eight educators from 53 institutions across five countries completed assessments before training (pre-tests), 89 completed post-tests (after training), and 82 completed maintenance assessments (a month after post-test). Pre-test autism stigma was heightened among males, educators with less autism knowledge, and those who reported heightened social dominance orientation. Autism knowledge, autism stigma, and attitudes toward UD improved with training. Improvements remained apparent a month after post-test but were somewhat attenuated for knowledge and stigma. To the best of our knowledge, this is the first evidence of maintenance of benefits of an autism training over time. Participants’ main reason for enrolling in the study was to gain a better understanding about neurodiversity. Feedback indicates that this goal was reached by most with the added benefit of gaining understanding about UD. Results suggest that interest in one type of diversity (e.g. autism) can motivate faculty to learn UD-aligned teaching strategies that benefit diverse students more generally.Lay abstractAutistic university students have many strengths. They also go through difficulties that professors may not understand. Professors may not understand what college life is like for autistic students. They might judge autistic students. A team of autistic and non-autistic researchers made a training to help professors understand autistic students better. This training also gave professors ideas to help them teach all of their students. Ninety-eight professors did an online survey before the autism training. They shared how they felt about autism and teaching. Before our training, professors who knew more about autism appreciated autism more. Professors who thought people should be equal and women also appreciated autism more. Then, 89 of the professors did our training and another survey after the training. This helped us see what they learned from the training. They did one more survey a month later. This helped us see what they remembered. Our training helped professors understand and value autism. It also helped them understand how they can teach all students better. The professors remembered a lot of what we taught them. This study shows that a training that autistic people helped make can help professors understand their autistic students better.
  Citation: Autism
  PubDate: 2022-06-02T08:34:38Z
  DOI: 10.1177/13623613221097207
Nutrient intake and adequacy in children with autism spectrum disorder:
EPINED epidemiological study
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  Authors: Victoria Arija, Patricia Esteban-Figuerola, Paula Morales-Hidalgo, Cristina Jardí, Josefa Canals-Sans
  First page: 371
  Abstract: Autism, Ahead of Print.
  This article assesses nutritional intake and adequacy in children with autism spectrum disorder (ASD), subdiagnostic autistic symptoms and children with typical development (TD). In total, 77 children diagnosed with ASD, 40 with subdiagnostic autistic symptoms and 333 children with TD were assessed. A validated food frequency questionnaire was used. Very few nutritional differences were found between ASD and TD groups. Preschool children with ASD and subdiagnostic autistic symptoms had slightly lower intake of monounsaturated fatty acids (MUFA), vitamin D and vitamin B12, and primary school children with ASD and subdiagnostic autistic symptoms had slightly higher intake of protein, cholesterol, thiamine and niacin, and a higher percentage of obesity than children with TD. All samples had an unbalanced energy intake (high in added sugars, fats and saturated fatty acids (SFAs); extremely inadequate intake (80%–100%) of vitamins D and E; high intake (50%–80%) of fibre, b-carotene (except preschool children with TD), calcium (except preschool children) and magnesium). The fact that differences between diagnoses are scarce may be related to the low level of ASD severity in this school sample.Lay abstractChildren with autism spectrum disorder (ASD) have a fivefold elevated risk of developing eating problems, which predisposes them to nutritional deficiencies. This study assesses nutritional intake and adequacy in children with ASD, subdiagnostic autistic symptoms and typically developing (TD) children. Preschool children with ASD and subdiagnostic symptoms had slightly lower intake of monounsaturated fatty acids (MUFA), vitamin D and vitamin B12. Primary school children with ASD and subdiagnostic symptoms had slightly higher intake of protein, cholesterol, thiamine and niacin, and a higher percentage of obesity than children with TD. All children had a high intake in sugars, fats and saturated fatty acids; a very highly inadequate intake of vitamins (vitamins D and E), fibre, b-carotene, calcium and magnesium; and a moderately inadequate intake of vitamin C, folate and iron. However, although all children need nutrition advice, children with ASD and subdiagnostic autistic symptoms had a poorer quality diet than those with TD.
  Citation: Autism
  PubDate: 2022-06-20T09:36:47Z
  DOI: 10.1177/13623613221098237
Prospective relationship between autistic traits and nutrient intakes
among Japanese children: Results of the Shika study
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  Authors: Hiromasa Tsujiguchi, Akinori Hara, Sakae Miyagi, Kim Oanh Pham, Keita Suzuki, Thao Thi Thu Nguyen, Yasuki Ono, Yasuhiro Kambayashi, Yukari Shimizu, Haruki Nakamura, Fumihiko Suzuki, Aki Shibata, Koichi Hayashi, Hirohito Tsuboi, Hiroyuki Nakamura
  First page: 389
  Abstract: Autism, Ahead of Print.
  Increased food selectivity among children with autism spectrum disorder may lead to nutritional inadequacy. We designed this study to examine the prospective relationship between autistic traits in children and subsequent nutrient intake in later childhood and whether this relationship changes over time. We utilized longitudinal data obtained at two time points from the Shika study, an ongoing population-based study conducted in a rural area of Japan. Participants were 759 Japanese children aged between 7 and 12 years at baseline and between 10 and 15 years in the follow-up. The results obtained showed relatively lower intakes of sodium, calcium, magnesium, iron, vitamin D, vitamin B2, and vitamin B12 among children with than without autistic traits. Interactions were observed among autistic traits and time points for iron, vitamin B2, folic acid, and pantothenic acid. The results of this study suggest the importance of screening the nutrient intake of children with autistic traits across childhood in order to reduce the risk of restricted intake.Lay AbstractIt is known about food selectivity among children with autism spectrum disorder. However, the nutritional inadequacy among children with ASD is not clear. Especially, long-term evaluation has not been studied. We examined the prospective relationship between autistic traits in children and subsequent nutrient intake in later childhood. We utilized data obtained at two time points from a study conducted in Japan. Participants were 759 Japanese children aged between 7 and 12 years at baseline and between 10 and 15 years in the follow-up. The results showed relatively lower intakes of sodium, calcium, magnesium, iron, vitamin D, vitamin B2, and vitamin B12 among children with than without autistic traits. Relatively lower intake of minerals and vitamins in children with autistic traits is more evident in later childhood. The results suggest the importance of screening the nutrient intake of children with autistic traits across childhood.
  Citation: Autism
  PubDate: 2022-06-02T08:37:45Z
  DOI: 10.1177/13623613221097487
Sex differences in predictors and outcomes of camouflaging: Comparing
diagnosed autistic, high autistic trait and low autistic trait young
adults
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  Authors: Victoria Milner, Will Mandy, Francesca Happé, Emma Colvert
  First page: 402
  Abstract: Autism, Ahead of Print.
  Many autistic individuals camouflage socially atypical behaviours. Evidence suggests autistic females camouflage more than autistic males. Although camouflaging may confer some benefits, it is also associated with negative outcomes including poorer mental health and well-being. Those with high autistic traits but no clinical diagnosis are not seldom included in camouflaging research, therefore we cannot ascertain whether camouflaging plays a role in the underdiagnosis of autistic females. Data from young adults with a diagnosis of autism (n = 78), high autistic traits but no diagnosis (n = 177) or low autistic traits (n = 180) revealed autistic females reported camouflaging significantly more than other groups. Males and females with low autistic traits reported significantly lower camouflaging than high trait and diagnosed groups. Loneliness was a key predictor of camouflaging for the diagnosed group only. Camouflaging was found to predict lower psychological quality of life for the diagnosed group, and lower social quality of life for the high trait and low trait groups. Overall, findings indicated that, although all groups reported camouflaging, the motivations for doing so may be different for diagnosed autistic individuals. It is important for stakeholders and society to improve understanding of autism and acceptance of atypical behaviour to alleviate possible negative outcomes associated with camouflaging.Lay AbstractMany autistic people use strategies that help them adapt in social situations and hide behaviours that may seem different to non-autistic individuals – this is called camouflaging. Camouflaging may help autistic people fit in socially; however, it might also lead to poorer well-being. It has been suggested that autistic females camouflage more than autistic males. This article explored differences between males and females who have an autism diagnosis, have characteristics of autism but no diagnosis and those with few autistic characteristics. It is important to include these groups as camouflaging may make it more difficult to get an autism diagnosis and therefore make it less likely a person will receive support. We found that autistic women camouflaged more than all other groups. The group with few autistic characteristics (males and females) camouflaged the least. Loneliness was found to be a possible reason for camouflaging for the diagnosed autistic group only. In terms of outcomes related to camouflaging, it was found that those who camouflaged most had a lower quality of life; this was true of all groups. This tells us that there may be different reasons to camouflage, and different outcomes related to camouflaging for those with many characteristics of autism (including those with a diagnosis), and those with few. It is important that clinicians, teachers, parents and other stakeholders are aware of the negative outcomes associated with camouflaging so that more support can be provided for those who need it.
  Citation: Autism
  PubDate: 2022-06-02T08:41:48Z
  DOI: 10.1177/13623613221098240
Clinician factors related to the delivery of psychotherapy for autistic
youth and youth with attention-deficit hyperactivity disorder
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  Authors: Flora Roudbarani, Paula Tablon Modica, Brenna B Maddox, Yvonne Bohr, Jonathan A Weiss
  First page: 415
  Abstract: Autism, Ahead of Print.
  Autistic children and adolescents are more likely than non-autistic youth to experience mental health problems, such as anxiety or depression, but less likely to receive psychotherapy to address these concerns. Recent research indicates that clinician factors, such as knowledge, attitudes, confidence and beliefs, can impact their decisions to provide care, though this work has primarily focused on adults or within the context of one kind of treatment (cognitive behaviour therapy). The current study examined psychological predictors (e.g. attitudes and confidence) of clinicians’ intention to deliver psychotherapy to autistic youth and those with attention-deficit hyperactivity disorder. Participants included 611 clinicians across publicly funded agencies in Ontario, Canada. Multiple mediation analyses revealed that clinician knowledge on mental health-related topics (e.g. core symptoms, developing treatment plans and identifying progress towards treatment goals) was associated with intention to treat autistic clients or clients with attention-deficit hyperactivity disorder, and normative pressures and attitudes partially mediated this association. Clinicians felt less likely to treat autistic clients than clients with attention-deficit hyperactivity disorder, partly because of differences in attitudes, normative pressures and knowledge. This research suggests that targeted training around autism and mental health care may be a useful initiative for agency staff.Lay abstractAutistic children and youth often experience mental health problems, such as anxiety, depression and behavioural challenges. Although there are therapy programmes that have been found helpful in reducing these issues, such as cognitive behaviour therapy, autistic children often struggle to receive adequate mental health care. Clinicians’ knowledge, attitudes, confidence and beliefs about treating mental health problems in autistic people may be related to their choices in providing psychotherapy. Across Ontario, Canada, 611 mental health clinicians, working in publicly funded agencies, completed an online survey about their experiences and opinions on delivering therapy for autistic clients compared to those with attention-deficit hyperactivity disorder. Clinician knowledge was associated with their intention to treat autistic clients or clients with attention-deficit hyperactivity disorder, partly because of their attitudes and the social pressures or values they felt. Clinicians reported feeling less intent on providing therapy to autistic youth compared to youth with attention-deficit hyperactivity disorder because of differences in their attitudes, social pressures and knowledge. This research can inform the training and educational initiatives for mental health practitioners.
  Citation: Autism
  PubDate: 2022-07-02T07:12:24Z
  DOI: 10.1177/13623613221106400
Predicting intervention use in autistic children: Demographic and
autism-specific characteristics
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