AutismPub Date : 2025-08-01Epub Date: 2025-04-25DOI: 10.1177/13623613251335070
Chris Edwards, Abigail Ma Love, Ru Ying Cai, Melanie Heyworth, Alexandra Johnston, Fiona Aldridge, Vicki Gibbs
{"title":"\"I'm not feeling alone in my experiences\": How newly diagnosed autistic adults engage with a neurodiversity-affirming \"Welcome Pack\".","authors":"Chris Edwards, Abigail Ma Love, Ru Ying Cai, Melanie Heyworth, Alexandra Johnston, Fiona Aldridge, Vicki Gibbs","doi":"10.1177/13623613251335070","DOIUrl":"10.1177/13623613251335070","url":null,"abstract":"<p><p>Receiving an autism diagnosis in adulthood can be profoundly transformative, yet many newly diagnosed autistic adults experience a lack of accessible, affirming post-diagnostic support. This study explores how a self-guided, neurodiversity-affirming resource-the \"Welcome Pack\"-supports newly diagnosed autistic adults in navigating their evolving identity. Using a qualitative approach, we recruited 11 autistic adults without intellectual disability in Australia who had received a diagnosis within the past 6 months. Participants engaged with the \"Welcome Pack\" over a 2-month period before taking part in semi-structured interviews. Reflexive thematic analysis generated four key themes: (1) a sense of belonging through community and representation, as participants found validation in shared narratives; (2) the \"Welcome Pack\" as one of many tools supporting their self-understanding; (3) emotional reflections, including both relief and grief over years of masking; and (4) challenges in self-advocacy and educating others. While participants described the \"Welcome Pack\" as an important and validating resource, they also highlighted the need for additional structured peer support and practical guidance. These findings underscore the value of integrating self-guided resources within broader post-diagnostic ecosystems, ensuring that newly diagnosed autistic adults receive timely, accessible, and neurodiversity-affirming support as they navigate their identity.Lay Abstract.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2072-2083"},"PeriodicalIF":5.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12255835/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143955776","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AutismPub Date : 2025-07-23DOI: 10.1177/13623613251355255
Mackenzie Bougoure, Sici Zhuang, Jack D Brett, Murray T Maybery, Michael C English, Diana Weiting Tan, Iliana Magiati
{"title":"Measuring autistic burnout: A psychometric validation of the AASPIRE Autistic Burnout Measure in autistic adults.","authors":"Mackenzie Bougoure, Sici Zhuang, Jack D Brett, Murray T Maybery, Michael C English, Diana Weiting Tan, Iliana Magiati","doi":"10.1177/13623613251355255","DOIUrl":"https://doi.org/10.1177/13623613251355255","url":null,"abstract":"<p><p>Autistic burnout is characterised by extreme exhaustion, loss of functioning, and reduced tolerance to stimulus, resulting from the cumulative stress associated with navigating a predominantly non-autistic world. To date, in mostly qualitative studies, autistic burnout has been associated with poorer mental health, well-being and life outcomes in autistic adults. To comprehensively investigate autistic burnout, identify affected individuals and evaluate supports, a valid and reliable measure is required. The current study explored the psychometric properties of the AASPIRE Autistic Burnout Measure. The Autistic Burnout Measure and other related measures (camouflaging, mental health) were completed online by 379 autistic adults. The Autistic Burnout Measure demonstrated a predominantly unidimensional structure, with high loadings across all 27 items, excellent internal consistency (ω = 0.98), and reasonable consistency over 12 months (<i>r</i> = 0.59). It also showed sound construct validity, with medium-to-large positive correlations with autistic traits, camouflaging, occupational burnout, depression and anxiety. The Autistic Burnout Measure also effectively differentiated between autistic participants who reported currently experiencing autistic burnout and those who were not (area under the curve = 0.92; 95% confidence interval = [0.86, 0.97]). Our findings indicate that the Autistic Burnout Measure has promising psychometric properties and may be a useful measure in future autism research and practice. However, further validation is necessary to determine whether the unidimensional structure holds across diverse samples.Lay abstractAutistic people have described autistic burnout as an intense experience of physical, emotional, mental and social exhaustion impacting their ability to complete everyday tasks and contributing to poorer well-being. To identify and measure autistic burnout in practice and research, we need a self-report measure that gives accurate and consistent results. In this study, 379 autistic adults completed a recently developed measure of autistic burnout online, the AASPIRE Autistic Burnout Measure. We analysed their ratings to determine whether the measure is reliable (i.e. ratings are consistent), valid (i.e. the tool measures what it says it measures), correctly identifies those currently experiencing burnout, and is associated with other relevant experiences, such as camouflaging, anxiety and depression. The Autistic Burnout Measure was found to be reliable and valid. Autistic adults reporting greater autistic burnout also reported more camouflaging, autistic traits and greater general burnout, depression, and anxiety. The Autistic Burnout Measure was accurate in identifying individuals who reported currently experiencing autistic burnout and those who did not. Overall, our findings suggest that the Autistic Burnout Measure may be suitable for use in research and practice to identify and better understand experie","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251355255"},"PeriodicalIF":5.2,"publicationDate":"2025-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144688823","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"'I don't think they understand the reality of autism': The lived experiences of autistic adults in Japan.","authors":"Nanami Harada, Elizabeth Pellicano, Shinichiro Kumagaya, Satsuki Ayaya, Kosuke Asada, Atsushi Senju","doi":"10.1177/13623613251355303","DOIUrl":"https://doi.org/10.1177/13623613251355303","url":null,"abstract":"<p><p>Most autism research has been conducted in Western settings, which means that we know little about the lived experiences of autistic adults across a wide range of sociocultural contexts and countries. This study is, to our knowledge, the first to examine the lived experiences of autistic Japanese adults, eliciting their experiences of growing up autistic from their time at elementary school to the time of interview. We used semi-structured interviews with seven autistic Japanese adults, who had been clinically diagnosed in their 20s and 30s. Using reflexive thematic analysis, we identified four themes, including (1) people feeling different and misunderstood, (2) the books, doctors or other autistic people enabling the journey towards diagnosis, (3) the many and mixed emotions that emanated from the diagnosis and (4) a strong desire to be accepted. All interviewees experienced significant hardship throughout their lives, including a lack of acceptance of their diagnosis from their families. While this took its toll on the interviewees' mental health, they desired to be understood by others and to address stigma. More efforts are needed to increase the knowledge, understanding and acceptance of autism in Japan through the lens of neurodiversity and with the input of the autistic community.Lay AbstractWe know more and more about what it's like to be autistic and autistic people's experiences at school and at work. But most studies are from Western cultures, especially the United Kingdom and the United States, which means we know little about what it's like to be autistic in other cultures, including East Asian cultures. In this study, for the first time, we investigated the life experiences from school to employment of Japanese autistic adults. We asked seven Japanese autistic adults, who had received their clinical diagnosis in their 20s and 30s, about their experiences from their own perspective. We found four major ideas or 'themes': (1) people feeling different and misunderstood, (2) the books, doctors or other autistic people enabling the journey towards diagnosis, (3) the many, mixed emotions that came from getting an autism diagnosis and (4) a strong desire to be accepted. All participants experienced bullying and felt different from others around them from an early age. Some participants were happy to receive their autism diagnosis, which made them understand themselves better, while others had mixed feelings - such as feeling hopeless because autism has no cure. Our findings are consistent with previous Western research. We also found some distinctive experiences from Japanese participants, who faced a significant amount of stigma, potentially because of negative attitudes towards autism/disability and Japanese social expectations and rules. Future research should focus on the needs of autistic people in Japan and work with them to increase understanding, awareness and acceptance of autism.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251355303"},"PeriodicalIF":5.2,"publicationDate":"2025-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144666977","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AutismPub Date : 2025-07-20DOI: 10.1177/13623613251355231
Rebecca W Lieb, Luther G Kalb, Rachel Reetzke, Natasha N Ludwig, Christina E Love, Rowena Ng, Danielle Wexler, Allison E Gornik, Calliope Holingue, Ji Su Hong
{"title":"Associations between emotion and behavior codes and ADOS-2 scores in a sample of children referred for autism evaluation.","authors":"Rebecca W Lieb, Luther G Kalb, Rachel Reetzke, Natasha N Ludwig, Christina E Love, Rowena Ng, Danielle Wexler, Allison E Gornik, Calliope Holingue, Ji Su Hong","doi":"10.1177/13623613251355231","DOIUrl":"https://doi.org/10.1177/13623613251355231","url":null,"abstract":"<p><p>While the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) is considered a \"reference standard\" measure to observe symptoms of autism spectrum disorder (ASD), little is known about the utility of its Other Abnormal Behaviors or \"E codes.\" This study investigated the unique influence of each E code (overactivity, disruptive behavior, anxiety) on ADOS-2 scoring. Data from ADOS-2 administrations (Modules 1, 2, 3) were collected from 3364 children (mean age = 6.73 years) at an outpatient ASD clinic. For those with ASD, ADOS-2 Calibrated Severity Scores (CSS) were descriptively higher for those with overactivity and disruptive behavior, but lower for those with anxiety. For those without ASD, no patterns emerged when comparing means. After controlling for age, sex, and language level, multivariable linear models indicated the presence of overactivity was significantly associated with increased CSS for children with ASD compared to those without. No significant interaction was present for disruptive behavior. The presence of anxiety was significantly associated with increased Social Affect CSS only for those without ASD. All effect sizes were small. This is one of the first studies to evaluate the effect of each individual E code on ADOS-2 CSS. Unique differences emerged across diagnostic groups, suggesting implications for ADOS-2 interpretation.Lay SummaryThe Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) is a common assessment tool used during an autism evaluation. As part of the ADOS-2, the examiner rates \"E codes,\" which are levels of hyperactivity, disruptive behavior, and anxiety during testing. These codes are not part of the final ADOS-2 score. While there is a lot of research on the ADOS-2, less is known about these E codes. This study looked at how the E codes might affect the final ADOS-2 scoring. Information came from 3364 in-person autism assessments (average age = 6.73 years) who were evaluated at an autism specialty clinic. For autistic children, ADOS-2 scores were higher (i.e. more autism-related behaviors) for those with overactivity and disruptive behavior, but lower for those with anxiety. For those without autism, there was no pattern. After accounting for the child's age, sex, and language level, there were unique results for each E code, depending on whether the child received an autism diagnosis. This study is important as it is one of the first to evaluate the effects of each E code on ADOS-2 scores and could impact how scores are interpreted when considering an autism diagnosis.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251355231"},"PeriodicalIF":5.2,"publicationDate":"2025-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144666976","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AutismPub Date : 2025-07-16DOI: 10.1177/13623613251347740
Michael Cw English, Rebecca E Poulsen, Murray T Maybery, David McAlpine, Paul F Sowman, Elizabeth Pellicano
{"title":"Psychometric evaluation of the Comprehensive Autistic Trait Inventory in autistic and non-autistic adults.","authors":"Michael Cw English, Rebecca E Poulsen, Murray T Maybery, David McAlpine, Paul F Sowman, Elizabeth Pellicano","doi":"10.1177/13623613251347740","DOIUrl":"https://doi.org/10.1177/13623613251347740","url":null,"abstract":"<p><p>Measures of autistic traits are only useful - for pre-diagnostic screening, exploring individual differences, and gaining personal insight - if they efficiently and accurately assess autism as currently conceptualised while maintaining psychometric validity across different demographic groups. We recruited 1322 autistic and 1279 non-autistic adults who varied in autism status (non-autistic, diagnosed autistic, self-identifying autistic) and gender (cisgender men, cisgender women, gender diverse) to assess the psychometric properties of the Comprehensive Autistic Trait Inventory, a recently developed measure of autistic traits that examines six trait domains using 42 self-report statements. Factor fit for the six subscales was appropriate, as was total-scale and subscale reliability. Importantly, measurement invariance was demonstrated based on both autism status and gender, indicating that Comprehensive Autistic Trait Inventory scores of these group members can be directly compared. Autistic traits were highly similar between diagnosed and self-identifying autistic adults, while gender-diverse participants showed more autistic traits than their cisgender counterparts. A total-scale discrimination threshold of 147.5 calculated was suggested which corresponded to sensitivity and specificity of 77.20 and 87.41, respectively. Our analysis indicates that the Comprehensive Autistic Trait Inventory is a practical measure of autistic traits in non-autistic and autistic participants that is useful for researchers and clinicians and for affirming self-identity.Lay abstractThe Comprehensive Autistic Trait Inventory (CATI) is a free questionnaire designed to measure autistic traits in both autistic and non-autistic adults. The CATI includes 42 items focusing on six areas: Social Interactions, Communication, Social Camouflage, Self-Regulating Behaviours, Cognitive Flexibility, and Sensory Sensitivity. Here, we set out to determine whether the CATI can accurately measure autistic traits in both autistic (both diagnosed and self-identifying) and non-autistic people, as well as people of different genders. We also wanted to explore the extent to which trait scores differed between these groups of individuals. Our study recruited over 2600 participants, including 1322 autistic and 1279 non-autistic adults. Our findings suggest that the CATI works the way it was designed to. It is a reliable and accurate tool for measuring autistic traits, can distinguish between autistic and non-autistic people, and appears appropriate for people of different genders. Notably, we found that people who self-identify as autistic have similar trait scores to those with a clinical diagnosis of autism and that gender-diverse people scored higher on autistic traits compared to cisgender people. Our data suggest that the CATI is a useful tool for measuring autistic traits in autistic and non-autistic people and for understanding the way that autistic people vary from one another. ","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251347740"},"PeriodicalIF":5.2,"publicationDate":"2025-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144648358","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AutismPub Date : 2025-07-12DOI: 10.1177/13623613251357648
Hanna Bertilsdotter Rosqvist, Amy Pearson, Georgia Pavlopoulou, Kristen Bottema-Beutel
{"title":"The social model in autism research.","authors":"Hanna Bertilsdotter Rosqvist, Amy Pearson, Georgia Pavlopoulou, Kristen Bottema-Beutel","doi":"10.1177/13623613251357648","DOIUrl":"https://doi.org/10.1177/13623613251357648","url":null,"abstract":"","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251357648"},"PeriodicalIF":5.2,"publicationDate":"2025-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144616108","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Hypothalamic volume is associated with dysregulated sleep in autistic and non-autistic young children.","authors":"Burt Hatch, Derek Sayre Andrews, Brett Dufour, Shayan M Alavynejad, Joshua K Lee, Sally Rogers, Marjorie Solomon, Meghan Miller, Christine Wu Nordahl","doi":"10.1177/13623613251352249","DOIUrl":"10.1177/13623613251352249","url":null,"abstract":"<p><p>Difficulty initiating or maintaining sleep is common among autistic individuals and co-occurs with internalizing and externalizing symptoms. This study tested associations between subcortical regions implicated in sleep processes and measures of dysregulated sleep initiation/maintenance in autistic and non-autistic 2- to 4-year-olds. The role of co-occurring externalizing and internalizing symptoms in these associations was also evaluated. Participants included 203 autistic (131 males, 72 females) and 92 non-autistic (49 males, 43 females) 2- to 4-year-olds who completed magnetic resonance imaging. A subscale of items from the Children's Sleep Habits Questionnaire, previously shown to be reliable across both autistic and non-autistic children, was used to measure dysregulated sleep initiation/maintenance. Externalizing and internalizing symptoms were evaluated using the Child Behavior Checklist-Preschool. Associations between volumes for nine subcortical structures known to be implicated in sleep were separately modeled. Mediation analyses explored whether such associations could be accounted for by externalizing or internalizing symptoms. Smaller right hypothalamus volume was associated with dysregulated sleep initiation/maintenance in both autistic and non-autistic children. Externalizing (but not internalizing) problems partially mediated this association. Findings implicate the right hypothalamus in sleep initiation and maintenance issues for both autistic and non-autistic young children, supporting prior evidence of its central role in sleep regulation.Lay AbstractDifficulty initiating or maintaining sleep is common among autistic individuals and often goes alongside difficulties regulating emotions and behavior during the day. Although there is a body of research suggesting that subcortical brain regions, including a brain region known as the hypothalamus, play important roles regulating sleep, few studies have examined whether this extends to young autistic children. Using data from a sample of 203 autistic (131 males, 72 females) and 92 non-autistic (49 males, 43 females) 2- to 4-year-olds, we examined whether size of subcortical brain regions implicated in sleep processes is associated with difficulties initiating and/or maintaining sleep. In addition, we examined whether daytime behaviors and emotions were also implicated in these associations. We found that smaller right hypothalamus volume was associated with dysregulated sleep initiation/maintenance in both autistic and non-autistic children. This relationship remained evident even after accounting for externalizing behaviors and emotions like anger that were also associated with both the hypothalamus and dysregulated sleep initiation/maintenance. The strength of association between right hypothalamus volumes and dysregulated sleep initiation/maintenance was similar for autistic and non-autistic children. These findings suggest that for both young autistic and non-autistic chil","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251352249"},"PeriodicalIF":5.2,"publicationDate":"2025-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144590366","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AutismPub Date : 2025-07-09DOI: 10.1177/13623613251353358
Anke M Scheeren, Smiddy Nieuwenhuis, Laura Crane, Yvette Roke, Sander Begeer
{"title":"Masking, social context and perceived stress in autistic adults: An ecological momentary assessment study.","authors":"Anke M Scheeren, Smiddy Nieuwenhuis, Laura Crane, Yvette Roke, Sander Begeer","doi":"10.1177/13623613251353358","DOIUrl":"https://doi.org/10.1177/13623613251353358","url":null,"abstract":"<p><p>Masking may entail the suppression of autistic traits by autistic individuals. Thus far, research indicates a negative impact of autistic masking on mental health, but this is largely based on retrospective surveys. In this study, we used ecological momentary assessment to examine real-time associations between social context (i.e. presence of (non-)autistic others), masking, and perceived stress in everyday life among a sample of autistic adults. Ecological momentary assessment data were collected via a smartphone application for 87 autistic individuals (58 females; <i>M</i> age = 48; age range: 17-68). In line with the hypotheses, repeated measures analyses of variance and linear mixed models indicated that (1) participants reported masking significantly less when they were alone compared with when others were present, (2) participants masked significantly more when non-autistic others were present compared with autistic others, and (3) more masking was associated with a concurrent higher level of perceived stress. Autistic adults reported they could be more themselves among autistic peers and reduced masking was associated with reduced stress. These ecological momentary assessment study findings provide ecological validity to the potential stressful impact of masking in the daily lives of autistic adults.Lay abstractAutistic people may try to hide their autistic traits in order to fit in. This is called autistic masking. Survey research suggests that autistic masking may have a negative effect on the mental well-being of autistic people. Yet, survey research has limitations, because people may not remember or may not accurately report how much they masked and how they felt in the past. Therefore, in this study, we asked autistic adults to use a smartphone app to report with whom they were (with or without autistic people), if they could be themselves (degree of masking), and how stressed they felt during the past 4 h. Participants reported this information multiple times over a period of 28 days. In total, 87 autistic adults participated (58 females; age range: 17-68). In line with our expectations, (1) participants masked less when they were alone compared with when others were present, (2) participants masked more when non-autistic others were present compared with autistic others, and (3) more masking was linked with the experience of more stress in the same moment. Autistic adults reported they could be more themselves among other autistic individuals. Also, less masking was associated with less stress. Our study shows the everyday reality of stress during masking experienced by autistic adults.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251353358"},"PeriodicalIF":5.2,"publicationDate":"2025-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144599236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AutismPub Date : 2025-07-08DOI: 10.1177/13623613251355257
Andrea Trubanova Wieckowski, Ashley de Marchena, Alexia F Dickerson, Erika Frick, Georgina Perez Liz, Ashley Dubin, Diana L Robins
{"title":"Short report: Autism diagnostic impressions in young children formed by primary care clinicians and through telemedicine expert assessments.","authors":"Andrea Trubanova Wieckowski, Ashley de Marchena, Alexia F Dickerson, Erika Frick, Georgina Perez Liz, Ashley Dubin, Diana L Robins","doi":"10.1177/13623613251355257","DOIUrl":"https://doi.org/10.1177/13623613251355257","url":null,"abstract":"<p><p>Formal autism diagnosis is often critical for children to access early, autism-specific services and supports. However, barriers to traditional in-person evaluations, including long waitlists, delay diagnosis. The goal of the current study was to compare diagnostic impressions (i.e. clinical judgments) made by primary care clinicians and autism experts conducting brief telehealth sessions, with expert diagnosis from in-person gold-standard evaluations. Participants were toddlers (<i>n</i> = 32, age 12-36 months) referred for any developmental concerns by four primary care clinicians from one pediatric practice in the United States. Primary care clinicians indicated their diagnostic classification and families then completed telehealth evaluations and in-person evaluations with one of five autism diagnostic expert clinicians. When primary care clinicians classified a child as having definite autism (<i>n</i> = 11), they were 100% accurate, but only 57% accurate when they indicated a child definitely did not have autism. Experts providing classification after a telehealth evaluation accurately classified 72% of children and were confident in the diagnosis for 55% of cases. In high-confidence cases, telehealth diagnosis matched final diagnosis 88% of the time. These findings indicate that when primary care clinicians believe a toddler is autistic, or when autism experts indicate autism telehealth classification with confidence, the child should begin receiving autism-specific services and supports right away.Lay abstractThere are long waitlists for autism evaluations, which greatly delay the start of interventions that are known to improve children's outcomes. We tested the accuracy of primary care clinicians' impressions of autism versus other developmental delays during well-child visits, and of experts during brief telemedicine visits, and found that more than half of the children were accurately identified through these streamlined methods. These findings support a tiered approach in which children identified through these more efficient methods begin autism intervention immediately; this approach also benefits children with more complex differentials by shortening waitlists for comprehensive evaluations for those who require them prior to treatment entry.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251355257"},"PeriodicalIF":5.2,"publicationDate":"2025-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144590367","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
AutismPub Date : 2025-07-08DOI: 10.1177/13623613251355247
Imane Kostet
{"title":"The (in)visibilisation of 'ethnicity', 'race' and 'culture' as constructs of difference in Global North autism disparities research.","authors":"Imane Kostet","doi":"10.1177/13623613251355247","DOIUrl":"https://doi.org/10.1177/13623613251355247","url":null,"abstract":"<p><p>Research evidences significant ethnic and racial disparities in the identification and diagnosis of autism in Global North contexts, sparking interest in how cultural factors contribute to these disparities. Despite this interest, however, the concept of 'culture' remains underdeveloped in autism research, where ethnic, racial, and other social categories are also often conflated. This has led to selective and limited explanations of how 'culture' influences the observed disparities. This commentary article discusses how autism research on the observed disparities in Global North contexts tends to hyper-visibilise ethnicity and race as proxies for 'differences', perpetuating cultural essentialist explanations for inequalities in diagnostics and social services. At the same time, research exploring autism as a constructed and negotiated 'culture' and 'identity' nearly renders ethnicity and race invisible. Consequently, little is known about how autism is initially shaped in intersection with ethnicity and race, how we collectively envision autistic individuals, and the extent to which our collective images are ethnically or racially diverse. This article advocates for a broader definition of culture in autism scholarship, emphasising how autism disparities also result from how autism is constructed and negotiated through processes of meaning-making.Lay abstractResearch shows that people from ethnic and racial minority groups in North America and Europe are confronted with major inequalities in the identification and diagnosis of autism. This has led to growing interest in autism research in how cultural factors might contribute to these differences. However, the way 'culture' is understood in autism research is still limited. Often, ethnic, racial and national backgrounds are mixed together, leading to narrow explanations for why these disparities exist. Concretely, this article explores how autism research often highlights ethnicity and race as markers of 'difference', which can reinforce oversimplified ideas about why these diagnostic inequalities occur. On the contrary, when autism is studied as a social identity or culture, ethnicity and race are almost ignored. Because of this, we know very little about how society imagines autistic people, and how diverse these images actually are in ethnic or racial terms. This study argues for a broader understanding of 'culture' in autism research, urging scholars to consider how autism is often viewed as primarily a 'white' condition through cultural and social interpretations. This approach could help better understand and address the disparities in autism diagnosis.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251355247"},"PeriodicalIF":5.2,"publicationDate":"2025-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144590368","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}