Dépouillements

Whose Outcomes Count? Rethinking Measurement in Global Autism Research / Shoba S. MEERA in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2437-2442 Titre : Whose Outcomes Count? Rethinking Measurement in Global Autism Research Type de document : texte imprimé Auteurs : Shoba S. MEERA, Auteur ; Mirko ULJAREVIĆ, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : p.2437-2442 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613261480175 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Whose Outcomes Count? Rethinking Measurement in Global Autism Research [texte imprimé] / Shoba S. MEERA, Auteur ; Mirko ULJAREVIĆ, Auteur ; Rosa A. HOEKSTRA, Auteur . - p.2437-2442. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2437-2442 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613261480175 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Common and Differing Elements Across Caregiver-Mediated Social Communication Programs Supporting Autistic Children: A Scoping Review With Content Analysis / Vipula RAJESH KUMAR in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2443-2464 Titre : Common and Differing Elements Across Caregiver-Mediated Social Communication Programs Supporting Autistic Children: A Scoping Review With Content Analysis Type de document : texte imprimé Auteurs : Vipula RAJESH KUMAR, Auteur ; Lauren CHOI, Auteur ; Janis ORAM, Auteur ; Amanda BINNS, Auteur Article en page(s) : p.2443-2464 Langues : Anglais (eng) Mots-clés : autism  caregiver-mediated interventions  social communication  coaching strategies  program elements  content analysis Index. décimale : PER Périodiques Résumé : Caregiver-mediated interventions are widely used to support social communication development in young autistic children. While many such interventions are evidence-informed, limited information exists about their shared and unique elements, making it challenging for caregivers and clinicians to tailor program selection to individual needs and preferences—an essential part of personalized care in autism. This scoping review with content analysis examined 18 commercially available, caregiver-mediated social communication interventions to identify similarities and differences in child skills targeted and caregiver-coached strategies. Data were extracted from program manuals, fidelity tools, published literature, and program websites for eight developmental social pragmatic (DSP) programs and 10 naturalistic developmental behavioral interventions (NDBIs). Programs varied in scope, with some supporting a broad range of child skills and others focusing on specific areas. Across all programs, 70 caregiver-coached strategies were identified, and then thematically grouped into eight categories aligned with the developmental skills the strategies aim to support. Although some strategies were common across all programs, some unique strategies were also identified. In addition, there were notable differences in how these strategies were operationalized despite using similar terminology, underscoring the need for more precise, clearly defined fidelity measures to enable accurate assessment of caregiver implementation and meaningful comparisons across programs. This study lays the groundwork for future research to identify active ingredients of interventions and supports more informed, individualized decision-making in clinical practice.Lay Abstract Young autistic children may engage with others and communicate in ways that differ from non-autistic peers, and may need support to develop skills to communicate with, and navigate interactions with others. Many programs have been developed for this purpose, with a growing number of programs including caregivers in this process. In programs where caregivers play a primary role, professionals coach them to use certain techniques that can support social communication. Although many such programs exist, we still lack clarity on how these programs are similar or different, making it tough for families to choose among them. To address this gap, we reviewed 18 well-known caregiver-led programs to compare the skills they aim to support children with, and the specific techniques they teach caregivers. We gathered information from program resource materials, published research, and official program websites. We found that some programs focused on supporting a wide range of skills, whereas others targeted only certain developmental areas. In total, we identified 70 distinct caregiver-coached techniques, which we organized into eight categories. Many techniques were common across all programs, but others were unique to specific programs. Even among the shared techniques, there were differences in the way they were practiced, despite using the same strategy name. For example, a technique like “following the child’s lead” could look quite different depending on the program. These findings show that having descriptions of how techniques should be used is important to understanding and comparing different programs. Overall, these findings provide families with information about program ingredients and can be used to guide clinicians toward programs that match individuals’ needs and wants. This work also paves way for future research exploring how these social communication programs work, and evaluating which techniques are most effective for specific groups of children and families. En ligne : https://dx.doi.org/10.1177/13623613261469913 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Common and Differing Elements Across Caregiver-Mediated Social Communication Programs Supporting Autistic Children: A Scoping Review With Content Analysis [texte imprimé] / Vipula RAJESH KUMAR, Auteur ; Lauren CHOI, Auteur ; Janis ORAM, Auteur ; Amanda BINNS, Auteur . - p.2443-2464. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2443-2464 Mots-clés : autism  caregiver-mediated interventions  social communication  coaching strategies  program elements  content analysis Index. décimale : PER Périodiques Résumé : Caregiver-mediated interventions are widely used to support social communication development in young autistic children. While many such interventions are evidence-informed, limited information exists about their shared and unique elements, making it challenging for caregivers and clinicians to tailor program selection to individual needs and preferences—an essential part of personalized care in autism. This scoping review with content analysis examined 18 commercially available, caregiver-mediated social communication interventions to identify similarities and differences in child skills targeted and caregiver-coached strategies. Data were extracted from program manuals, fidelity tools, published literature, and program websites for eight developmental social pragmatic (DSP) programs and 10 naturalistic developmental behavioral interventions (NDBIs). Programs varied in scope, with some supporting a broad range of child skills and others focusing on specific areas. Across all programs, 70 caregiver-coached strategies were identified, and then thematically grouped into eight categories aligned with the developmental skills the strategies aim to support. Although some strategies were common across all programs, some unique strategies were also identified. In addition, there were notable differences in how these strategies were operationalized despite using similar terminology, underscoring the need for more precise, clearly defined fidelity measures to enable accurate assessment of caregiver implementation and meaningful comparisons across programs. This study lays the groundwork for future research to identify active ingredients of interventions and supports more informed, individualized decision-making in clinical practice.Lay Abstract Young autistic children may engage with others and communicate in ways that differ from non-autistic peers, and may need support to develop skills to communicate with, and navigate interactions with others. Many programs have been developed for this purpose, with a growing number of programs including caregivers in this process. In programs where caregivers play a primary role, professionals coach them to use certain techniques that can support social communication. Although many such programs exist, we still lack clarity on how these programs are similar or different, making it tough for families to choose among them. To address this gap, we reviewed 18 well-known caregiver-led programs to compare the skills they aim to support children with, and the specific techniques they teach caregivers. We gathered information from program resource materials, published research, and official program websites. We found that some programs focused on supporting a wide range of skills, whereas others targeted only certain developmental areas. In total, we identified 70 distinct caregiver-coached techniques, which we organized into eight categories. Many techniques were common across all programs, but others were unique to specific programs. Even among the shared techniques, there were differences in the way they were practiced, despite using the same strategy name. For example, a technique like “following the child’s lead” could look quite different depending on the program. These findings show that having descriptions of how techniques should be used is important to understanding and comparing different programs. Overall, these findings provide families with information about program ingredients and can be used to guide clinicians toward programs that match individuals’ needs and wants. This work also paves way for future research exploring how these social communication programs work, and evaluating which techniques are most effective for specific groups of children and families. En ligne : https://dx.doi.org/10.1177/13623613261469913 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Rapid Review of the Brief Observation of Social Communication Change (BOSCC) Shows It Can Detect Behavioural Changes in Social Communication in Autism / Claire HOWLIN in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2465-2480 Titre : Rapid Review of the Brief Observation of Social Communication Change (BOSCC) Shows It Can Detect Behavioural Changes in Social Communication in Autism Type de document : texte imprimé Auteurs : Claire HOWLIN, Auteur ; Anna KOVALOVA, Auteur ; Artur JASCHKE, Auteur ; David M. GREENBERG, Auteur ; Beth MASON, Auteur ; Irene PALLÁS-FERRER, Auteur ; Eve MERRIAM, Auteur ; Catherine BRUSHWOOD, Auteur ; Jonathan POOL, Auteur ; Carrie ALLISON, Auteur ; Helen ODELL-MILLER, Auteur ; Karen HAYDEN, Auteur ; Carmel Simone MOORE, Auteur ; Rebecca ATKINSON, Auteur ; Ramarni Treyvone WILFRED, Auteur ; Simon BARON-COHEN, Auteur Article en page(s) : p.2465-2480 Langues : Anglais (eng) Mots-clés : autism  clinical  diagnoses  meta-analysis  methods  outcome measurement  school-age children  populations  interventions  supportive  social interaction  repetitive behaviours and interests Index. décimale : PER Périodiques Résumé : Reliable measurement of social communication change remains a major challenge in autism research. The Brief Observation of Social Communication Change (BOSCC) was developed to detect subtle changes in communication. This rapid review synthesised current evidence on the BOSCC’s responsiveness, validity, and suitability as a clinical trial endpoint. Systematic searches of PubMed, PsycINFO, CINAHL, and Web of Science identified 19 eligible studies (n = 789). Within-group meta-analyses estimated pre–post standardised mean change (Hedges’ g) for BOSCC and ADOS (Autism Diagnostic Observation Schedule) outcomes, using random-effect (RE) models. The BOSCC total score for intervention arms showed a moderate, significant change (g = −0.32, 95% confidence interval [CI] = [−0.42, −0.22]), with a smaller, non-significant change in control arms (g = −0.15). The Social Communication subscale yielded consistent effects on the intervention arm (g = −0.34, 95% CI = [−0.49, −0.19]), indicating sensitivity to improvements in reciprocal interaction. The restricted and repetitive behaviour (RRB) subscale also showed a moderate significant effect on the intervention arm but with wide confidence intervals indicating a large degree of heterogeneity in this result (g = −0.40, 95% CI = [−0.74, −0.06]). ADOS scores showed a similar pattern of results for the intervention arms, based on a sub-analysis of four studies that included both BOSCC and ADOS scores. Findings indicate that the BOSCC captures clinically meaningful behavioural change across diverse contexts. Variability in RRB outcomes may arise because they are not routinely targeted by supports for social communication, in line with neuro-affirmative approaches.Lay Abstract Autism research often aims to understand how different supports can help autistic children develop skills that are important to them and their families, such as social communication. However, changes in social communication are very difficult to measure. The Brief Observation of Social Communication Change (BOSCC) was developed to help address this. It focuses on observing natural, everyday interactions to capture subtle shifts in social communication and patterns of behaviour, and restricted and repetitive behaviours. In this review, we gathered and summarised all available studies up to March 2025 that used the BOSCC with autistic children, including both intervention studies and studies examining how well the BOSCC works. Across 19 studies including 789 children, we found that the BOSCC was consistently able to detect changes that occurred during a wide range of supports and programmes. The Social Communication subscale was particularly good at picking up changes, but the scale designed to measure repetitive behaviours was more inconsistent. The lack of changes in repetitive behaviours may reflect the diversity and important self-regulatory roles that repetitive behaviours can have, as well as the fact that many short-term interventions do not focus on changing them. The BOSCC was also found to be better at picking up changes in social communication compared to a diagnostic tool called the Autism Diagnostic Observation Schedule (ADOS). Overall, the evidence suggests that the BOSCC, particularly the Social Communication subscale, may be a useful way to detect changes in autistic communication over time. Future work should acknowledge that repetitive behaviours are not routinely targeted by supports intended to enhance communication and may serve a self-regulatory function, to manage sensory input, or to express emotions. This will help ensure that the BOSCC is used in a way that aligns with neurodiversity-affirming principles and supports ethically grounded research. En ligne : https://dx.doi.org/10.1177/13623613261471808 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Rapid Review of the Brief Observation of Social Communication Change (BOSCC) Shows It Can Detect Behavioural Changes in Social Communication in Autism [texte imprimé] / Claire HOWLIN, Auteur ; Anna KOVALOVA, Auteur ; Artur JASCHKE, Auteur ; David M. GREENBERG, Auteur ; Beth MASON, Auteur ; Irene PALLÁS-FERRER, Auteur ; Eve MERRIAM, Auteur ; Catherine BRUSHWOOD, Auteur ; Jonathan POOL, Auteur ; Carrie ALLISON, Auteur ; Helen ODELL-MILLER, Auteur ; Karen HAYDEN, Auteur ; Carmel Simone MOORE, Auteur ; Rebecca ATKINSON, Auteur ; Ramarni Treyvone WILFRED, Auteur ; Simon BARON-COHEN, Auteur . - p.2465-2480. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2465-2480 Mots-clés : autism  clinical  diagnoses  meta-analysis  methods  outcome measurement  school-age children  populations  interventions  supportive  social interaction  repetitive behaviours and interests Index. décimale : PER Périodiques Résumé : Reliable measurement of social communication change remains a major challenge in autism research. The Brief Observation of Social Communication Change (BOSCC) was developed to detect subtle changes in communication. This rapid review synthesised current evidence on the BOSCC’s responsiveness, validity, and suitability as a clinical trial endpoint. Systematic searches of PubMed, PsycINFO, CINAHL, and Web of Science identified 19 eligible studies (n = 789). Within-group meta-analyses estimated pre–post standardised mean change (Hedges’ g) for BOSCC and ADOS (Autism Diagnostic Observation Schedule) outcomes, using random-effect (RE) models. The BOSCC total score for intervention arms showed a moderate, significant change (g = −0.32, 95% confidence interval [CI] = [−0.42, −0.22]), with a smaller, non-significant change in control arms (g = −0.15). The Social Communication subscale yielded consistent effects on the intervention arm (g = −0.34, 95% CI = [−0.49, −0.19]), indicating sensitivity to improvements in reciprocal interaction. The restricted and repetitive behaviour (RRB) subscale also showed a moderate significant effect on the intervention arm but with wide confidence intervals indicating a large degree of heterogeneity in this result (g = −0.40, 95% CI = [−0.74, −0.06]). ADOS scores showed a similar pattern of results for the intervention arms, based on a sub-analysis of four studies that included both BOSCC and ADOS scores. Findings indicate that the BOSCC captures clinically meaningful behavioural change across diverse contexts. Variability in RRB outcomes may arise because they are not routinely targeted by supports for social communication, in line with neuro-affirmative approaches.Lay Abstract Autism research often aims to understand how different supports can help autistic children develop skills that are important to them and their families, such as social communication. However, changes in social communication are very difficult to measure. The Brief Observation of Social Communication Change (BOSCC) was developed to help address this. It focuses on observing natural, everyday interactions to capture subtle shifts in social communication and patterns of behaviour, and restricted and repetitive behaviours. In this review, we gathered and summarised all available studies up to March 2025 that used the BOSCC with autistic children, including both intervention studies and studies examining how well the BOSCC works. Across 19 studies including 789 children, we found that the BOSCC was consistently able to detect changes that occurred during a wide range of supports and programmes. The Social Communication subscale was particularly good at picking up changes, but the scale designed to measure repetitive behaviours was more inconsistent. The lack of changes in repetitive behaviours may reflect the diversity and important self-regulatory roles that repetitive behaviours can have, as well as the fact that many short-term interventions do not focus on changing them. The BOSCC was also found to be better at picking up changes in social communication compared to a diagnostic tool called the Autism Diagnostic Observation Schedule (ADOS). Overall, the evidence suggests that the BOSCC, particularly the Social Communication subscale, may be a useful way to detect changes in autistic communication over time. Future work should acknowledge that repetitive behaviours are not routinely targeted by supports intended to enhance communication and may serve a self-regulatory function, to manage sensory input, or to express emotions. This will help ensure that the BOSCC is used in a way that aligns with neurodiversity-affirming principles and supports ethically grounded research. En ligne : https://dx.doi.org/10.1177/13623613261471808 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

The Use of the Clinical Global Impressions Scale in Psychosocial Interventions for Autism Characteristics: A Systematic Review / Magdalena GLOD in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2481-2494 Titre : The Use of the Clinical Global Impressions Scale in Psychosocial Interventions for Autism Characteristics: A Systematic Review Type de document : texte imprimé Auteurs : Magdalena GLOD, Auteur ; Victoria GRAHAME, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.2481-2494 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  Clinical Global Impressions (CGI) scale  psychosocial interventions  systematic review Index. décimale : PER Périodiques Résumé : The increase in intervention diversity to improve core difficulties in autism has resulted in the development and proliferation of a variety of measures to assess change. The Clinical Global Impressions (CGI) scale has been recommended for use in pharmacological autism clinical trials to monitor individuals’ progress. No specific recommendations have been made for an outcome measure for psychosocial interventions. This review aimed to evaluate available evidence of a use of the CGI scale as an outcome measure in psychosocial interventions for autism characteristics. A systematic search of electronic databases identified 22 primary studies utilising the CGI scale to evaluate change across a range of social, communication and behavioural interventions for autistic people. The lack of consistency in the use of the measure was evident. This applied to the variety of constructs being measured, inconsistent application and scoring methods, which all limited the CGI scale’s reliability and validity. Despite the widespread use of the CGI scale in psychosocial clinical trials for autistic people, the lack of standardisation hampers conclusions regarding the evidence of its effectiveness in measuring change. Standardisation of the use of the CGI scale is essential to ensure comprehensive evaluation of interventions.Lay Abstract Many different therapies and supports exist to help autistic people with social, communication, and behavioural differences. To understand whether these interventions are working, researchers need good tools to measure change. One commonly used tool in medical studies is the Clinical Global Impressions (CGI) scale, which helps clinicians rate a person’s overall improvement. Although the CGI scale is recommended for autism medication studies, there are no clear guidelines for using it in psychosocial (non-medical) interventions. In this review, we looked at research studies that used the CGI scale to measure change after psychosocial interventions for autistic people. We found 22 studies that used the CGI scale in very different ways. The studies measured a wide range of skills and behaviours, and they often used the CGI scale differently from one another. This inconsistency makes it difficult to trust the results or compare findings across studies. Although the CGI scale is widely used, the lack of standard guidelines means it may not reliably show whether psychosocial interventions are effective. To improve research and ensure that interventions are properly evaluated, it is important to develop clear, standardised ways of using the CGI scale. En ligne : https://dx.doi.org/10.1177/13623613261472939 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] The Use of the Clinical Global Impressions Scale in Psychosocial Interventions for Autism Characteristics: A Systematic Review [texte imprimé] / Magdalena GLOD, Auteur ; Victoria GRAHAME, Auteur ; Jacqui RODGERS, Auteur . - p.2481-2494. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2481-2494 Mots-clés : autism spectrum disorder  Clinical Global Impressions (CGI) scale  psychosocial interventions  systematic review Index. décimale : PER Périodiques Résumé : The increase in intervention diversity to improve core difficulties in autism has resulted in the development and proliferation of a variety of measures to assess change. The Clinical Global Impressions (CGI) scale has been recommended for use in pharmacological autism clinical trials to monitor individuals’ progress. No specific recommendations have been made for an outcome measure for psychosocial interventions. This review aimed to evaluate available evidence of a use of the CGI scale as an outcome measure in psychosocial interventions for autism characteristics. A systematic search of electronic databases identified 22 primary studies utilising the CGI scale to evaluate change across a range of social, communication and behavioural interventions for autistic people. The lack of consistency in the use of the measure was evident. This applied to the variety of constructs being measured, inconsistent application and scoring methods, which all limited the CGI scale’s reliability and validity. Despite the widespread use of the CGI scale in psychosocial clinical trials for autistic people, the lack of standardisation hampers conclusions regarding the evidence of its effectiveness in measuring change. Standardisation of the use of the CGI scale is essential to ensure comprehensive evaluation of interventions.Lay Abstract Many different therapies and supports exist to help autistic people with social, communication, and behavioural differences. To understand whether these interventions are working, researchers need good tools to measure change. One commonly used tool in medical studies is the Clinical Global Impressions (CGI) scale, which helps clinicians rate a person’s overall improvement. Although the CGI scale is recommended for autism medication studies, there are no clear guidelines for using it in psychosocial (non-medical) interventions. In this review, we looked at research studies that used the CGI scale to measure change after psychosocial interventions for autistic people. We found 22 studies that used the CGI scale in very different ways. The studies measured a wide range of skills and behaviours, and they often used the CGI scale differently from one another. This inconsistency makes it difficult to trust the results or compare findings across studies. Although the CGI scale is widely used, the lack of standard guidelines means it may not reliably show whether psychosocial interventions are effective. To improve research and ensure that interventions are properly evaluated, it is important to develop clear, standardised ways of using the CGI scale. En ligne : https://dx.doi.org/10.1177/13623613261472939 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Overall Weak Association Between Gastrointestinal Symptoms and Psychological, Autism, and Demographic Variables in Autistic Children / Eliana ROSENTHAL in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2495-2504 Titre : Overall Weak Association Between Gastrointestinal Symptoms and Psychological, Autism, and Demographic Variables in Autistic Children Type de document : texte imprimé Auteurs : Eliana ROSENTHAL, Auteur ; Daniel A. WASCHBUSCH, Auteur ; Susan D. MAYES, Auteur Article en page(s) : p.2495-2504 Langues : Anglais (eng) Mots-clés : children  autism  gastrointestinal  co-occurring symptoms Index. décimale : PER Périodiques Résumé : Our study determined psychological, autism trait, somatic, and demographic variables associated with maternal ratings of stomachaches, constipation, diarrhea, and bowel incontinence in autistic children. Mothers of 1,093 autistic children rated their children on the Pediatric Behavior Scale. In regression analyses, the somatic symptom score (i.e., headaches, other aches/pains excluding stomachaches, complains of feeling sick) was the strongest predictor of stomachaches, constipation, and diarrhea. Scores on the other variables (autism severity, externalizing symptoms, internalizing symptoms, autism traits, sleep problems, demographics) each contributed less than 2% more to explained variance. Decreasing age and decreasing IQ were predictors of bowel incontinence. Only 1 of the 30 significant correlations between GI symptoms and the independent variables was large (stomachaches and other somatic symptoms), one was medium (stomachaches and sadness), and four were small to medium (stomachaches and anxiety and increasing age; bowel incontinence and decreasing age and decreasing IQ). The association between GI problems and psychopathology, autism symptoms, and demographics is weak. Findings suggest that researchers and clinicians need to look beyond these variables and consider medical, physiological, neurobiological, and genetic reasons why GI problems are so common in autism relative to children with other neurodevelopmental disorders and neurotypical children.Lay Abstract This study explored the reasons why autistic children often experience stomachaches and other digestive issues. We found that other physical symptoms, like headaches, were the biggest predictors of stomach problems, while factors like autism severity, age, or IQ had less influence. The researchers suggest that there may be medical or physical reasons behind these issues, beyond what is currently understood. En ligne : https://dx.doi.org/10.1177/13623613261464209 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Overall Weak Association Between Gastrointestinal Symptoms and Psychological, Autism, and Demographic Variables in Autistic Children [texte imprimé] / Eliana ROSENTHAL, Auteur ; Daniel A. WASCHBUSCH, Auteur ; Susan D. MAYES, Auteur . - p.2495-2504. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2495-2504 Mots-clés : children  autism  gastrointestinal  co-occurring symptoms Index. décimale : PER Périodiques Résumé : Our study determined psychological, autism trait, somatic, and demographic variables associated with maternal ratings of stomachaches, constipation, diarrhea, and bowel incontinence in autistic children. Mothers of 1,093 autistic children rated their children on the Pediatric Behavior Scale. In regression analyses, the somatic symptom score (i.e., headaches, other aches/pains excluding stomachaches, complains of feeling sick) was the strongest predictor of stomachaches, constipation, and diarrhea. Scores on the other variables (autism severity, externalizing symptoms, internalizing symptoms, autism traits, sleep problems, demographics) each contributed less than 2% more to explained variance. Decreasing age and decreasing IQ were predictors of bowel incontinence. Only 1 of the 30 significant correlations between GI symptoms and the independent variables was large (stomachaches and other somatic symptoms), one was medium (stomachaches and sadness), and four were small to medium (stomachaches and anxiety and increasing age; bowel incontinence and decreasing age and decreasing IQ). The association between GI problems and psychopathology, autism symptoms, and demographics is weak. Findings suggest that researchers and clinicians need to look beyond these variables and consider medical, physiological, neurobiological, and genetic reasons why GI problems are so common in autism relative to children with other neurodevelopmental disorders and neurotypical children.Lay Abstract This study explored the reasons why autistic children often experience stomachaches and other digestive issues. We found that other physical symptoms, like headaches, were the biggest predictors of stomach problems, while factors like autism severity, age, or IQ had less influence. The researchers suggest that there may be medical or physical reasons behind these issues, beyond what is currently understood. En ligne : https://dx.doi.org/10.1177/13623613261464209 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Sense of Coherence and the Relation to Autistic Traits in Autistic Adults / Britta WESTERBERG in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2505-2515 Titre : Sense of Coherence and the Relation to Autistic Traits in Autistic Adults Type de document : texte imprimé Auteurs : Britta WESTERBERG, Auteur ; Susanne BEJEROT, Auteur ; Ann LANGIUS-EKLÖF, Auteur ; Fredrik HOLLÄNDARE, Auteur Article en page(s) : p.2505-2515 Langues : Anglais (eng) Mots-clés : autism  sense of coherence  quality of life  central coherence Index. décimale : PER Périodiques Résumé : Sense of coherence reflects the ability to comprehend and interpret one’s environment as coherent and to experience life as manageable and meaningful. Sense of coherence is predictive of quality of life in several populations, but this relation has not been investigated among autistic individuals. Even though autistic individuals often describe difficulties perceiving the world in a coherent way, the sense of coherence concept is relatively unexplored in autism. The aim of this study was to explore the relationship between autistic traits, sense of coherence and quality of life in autistic individuals in Sweden. A total of 81 adults with autism completed questionnaires covering their sense of coherence, quality of life and autistic traits. The results showed that sense of coherence predicted quality of life and that autistic traits predicted sense of coherence levels in our sample. Based on the results, we suggest that sense of coherence may be important for the understanding of autistic functioning and that sense of coherence is essential for quality of life in this group. The study contributes to the understanding of autistic functioning and adds useful knowledge for the development of appropriate interventions for autistic individuals. Interventions that address aspects aimed at increasing the individual’s sense of coherence may therefore be warranted.Lay Abstract Sense of coherence reflects a person’s sense that their environment is understandable, that they can manage life’s challenges and that they judge it to be meaningful. In many populations, a strong sense of coherence is linked to a higher quality of life, but this relation has not been studied among autistic individuals. Even though autistic individuals often describe difficulties perceiving the world in a coherent way, the concept of sense of coherence is relatively unexplored among individuals with autism. This study explored the links between autistic traits, sense of coherence and quality of life in 81 autistic adults in Sweden who completed a series of questionnaires. We found that sense of coherence was a strong predictor of quality of life. We also discovered that having more autistic traits was linked to a weak sense of coherence. Based on our results, we suggest that sense of coherence may be important to understand autistic functioning. We also conclude that sense of coherence is important for quality of life in this group. This suggests that interventions designed to help individuals see their world as more coherent and manageable could be a valuable way to improve their quality of life. En ligne : https://dx.doi.org/10.1177/13623613261469916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Sense of Coherence and the Relation to Autistic Traits in Autistic Adults [texte imprimé] / Britta WESTERBERG, Auteur ; Susanne BEJEROT, Auteur ; Ann LANGIUS-EKLÖF, Auteur ; Fredrik HOLLÄNDARE, Auteur . - p.2505-2515. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2505-2515 Mots-clés : autism  sense of coherence  quality of life  central coherence Index. décimale : PER Périodiques Résumé : Sense of coherence reflects the ability to comprehend and interpret one’s environment as coherent and to experience life as manageable and meaningful. Sense of coherence is predictive of quality of life in several populations, but this relation has not been investigated among autistic individuals. Even though autistic individuals often describe difficulties perceiving the world in a coherent way, the sense of coherence concept is relatively unexplored in autism. The aim of this study was to explore the relationship between autistic traits, sense of coherence and quality of life in autistic individuals in Sweden. A total of 81 adults with autism completed questionnaires covering their sense of coherence, quality of life and autistic traits. The results showed that sense of coherence predicted quality of life and that autistic traits predicted sense of coherence levels in our sample. Based on the results, we suggest that sense of coherence may be important for the understanding of autistic functioning and that sense of coherence is essential for quality of life in this group. The study contributes to the understanding of autistic functioning and adds useful knowledge for the development of appropriate interventions for autistic individuals. Interventions that address aspects aimed at increasing the individual’s sense of coherence may therefore be warranted.Lay Abstract Sense of coherence reflects a person’s sense that their environment is understandable, that they can manage life’s challenges and that they judge it to be meaningful. In many populations, a strong sense of coherence is linked to a higher quality of life, but this relation has not been studied among autistic individuals. Even though autistic individuals often describe difficulties perceiving the world in a coherent way, the concept of sense of coherence is relatively unexplored among individuals with autism. This study explored the links between autistic traits, sense of coherence and quality of life in 81 autistic adults in Sweden who completed a series of questionnaires. We found that sense of coherence was a strong predictor of quality of life. We also discovered that having more autistic traits was linked to a weak sense of coherence. Based on our results, we suggest that sense of coherence may be important to understand autistic functioning. We also conclude that sense of coherence is important for quality of life in this group. This suggests that interventions designed to help individuals see their world as more coherent and manageable could be a valuable way to improve their quality of life. En ligne : https://dx.doi.org/10.1177/13623613261469916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Facilitating Autism Service Navigation, Parenting, and Self-Care Within a Community-Based Organization: A Pilot Feasibility Study With Culturally and Linguistically Diverse Families / Shana M. ATTAR in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2516-2531 Titre : Facilitating Autism Service Navigation, Parenting, and Self-Care Within a Community-Based Organization: A Pilot Feasibility Study With Culturally and Linguistically Diverse Families Type de document : texte imprimé Auteurs : Shana M. ATTAR, Auteur ; Hannah BENAVIDEZ, Auteur ; Carol GICHERU, Auteur ; Colleen ALABI, Auteur ; Risho SAPANO, Auteur ; Wendy L. STONE, Auteur Article en page(s) : p.2516-2531 Langues : Anglais (eng) Mots-clés : autism  developmental delay  co-design  community-based organizations  early intervention  service navigation  culturally and linguistically diverse  multilingual Index. décimale : PER Périodiques Résumé : Health care and early education systems are common entry points for autism identification and specialized services. However, culturally and linguistically diverse families are less likely to experience timely or positive interactions within these systems. This pilot feasibility study examined implementation outcomes of using non-specialist providers (NSPs) within a community-based non-profit organization to support early service navigation while also promoting caregiver use of evidence-based parenting and self-care strategies. Six multilingual NSPs completed a web-based training and delivered a four-session program, the Family Care Project, to 35 families of children aged 16 months to 5 years for whom there were developmental concerns. Implementation outcomes were assessed using Proctor’s taxonomy, including acceptability, feasibility, appropriateness, adoption, penetration, and sustainability. All families completed all four sessions within 5 weeks. NSPs reported high acceptability, feasibility, and appropriateness of the training and caregiver-facing materials; adoption was high, with 95% of planned module content delivered. At the 5-month follow-up, NSPs reported continued program use with additional families, providing evidence of organizational penetration and sustainability. Results suggest that a low-resource, culturally responsive curriculum can be acceptable, feasible, and appropriate for NSP-led delivery in community-based settings and may offer a scalable complement to health care–based navigation models.Lay Abstract Medical professionals and educators are often the first to identify concerns about a child’s development and help families seek care. However, families who speak languages other than English or who come from diverse cultural backgrounds may face barriers to accessing this support. This study examined whether trusted community providers, who share language and cultural backgrounds with families but do not have specialized clinical training, can deliver autism-related support within a community-based non-profit organization. Six community-based providers who speak a range of African and Middle Eastern languages completed an online training through the Family Care Project and used this program to support 35 families of young children. Providers reported that the program was easy to use and fit well with the work they already do. All families completed the program within 5 weeks. Six months later, providers had continued delivering the program and had supported an additional 24 families. These findings suggest that a low-cost, community-based program led by trusted providers from the same communities as participating families can support early autism-related service navigation. The Family Care Project may help more families access information, resources, and support early in their child’s development. En ligne : https://dx.doi.org/10.1177/13623613261469915 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Facilitating Autism Service Navigation, Parenting, and Self-Care Within a Community-Based Organization: A Pilot Feasibility Study With Culturally and Linguistically Diverse Families [texte imprimé] / Shana M. ATTAR, Auteur ; Hannah BENAVIDEZ, Auteur ; Carol GICHERU, Auteur ; Colleen ALABI, Auteur ; Risho SAPANO, Auteur ; Wendy L. STONE, Auteur . - p.2516-2531. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2516-2531 Mots-clés : autism  developmental delay  co-design  community-based organizations  early intervention  service navigation  culturally and linguistically diverse  multilingual Index. décimale : PER Périodiques Résumé : Health care and early education systems are common entry points for autism identification and specialized services. However, culturally and linguistically diverse families are less likely to experience timely or positive interactions within these systems. This pilot feasibility study examined implementation outcomes of using non-specialist providers (NSPs) within a community-based non-profit organization to support early service navigation while also promoting caregiver use of evidence-based parenting and self-care strategies. Six multilingual NSPs completed a web-based training and delivered a four-session program, the Family Care Project, to 35 families of children aged 16 months to 5 years for whom there were developmental concerns. Implementation outcomes were assessed using Proctor’s taxonomy, including acceptability, feasibility, appropriateness, adoption, penetration, and sustainability. All families completed all four sessions within 5 weeks. NSPs reported high acceptability, feasibility, and appropriateness of the training and caregiver-facing materials; adoption was high, with 95% of planned module content delivered. At the 5-month follow-up, NSPs reported continued program use with additional families, providing evidence of organizational penetration and sustainability. Results suggest that a low-resource, culturally responsive curriculum can be acceptable, feasible, and appropriate for NSP-led delivery in community-based settings and may offer a scalable complement to health care–based navigation models.Lay Abstract Medical professionals and educators are often the first to identify concerns about a child’s development and help families seek care. However, families who speak languages other than English or who come from diverse cultural backgrounds may face barriers to accessing this support. This study examined whether trusted community providers, who share language and cultural backgrounds with families but do not have specialized clinical training, can deliver autism-related support within a community-based non-profit organization. Six community-based providers who speak a range of African and Middle Eastern languages completed an online training through the Family Care Project and used this program to support 35 families of young children. Providers reported that the program was easy to use and fit well with the work they already do. All families completed the program within 5 weeks. Six months later, providers had continued delivering the program and had supported an additional 24 families. These findings suggest that a low-cost, community-based program led by trusted providers from the same communities as participating families can support early autism-related service navigation. The Family Care Project may help more families access information, resources, and support early in their child’s development. En ligne : https://dx.doi.org/10.1177/13623613261469915 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Understanding Autism Through Indigenous Relational Ecologies: A Phenomenographic Exploratory Study With Potawatomi Participants / Jessica C. KITCHENS in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2532-2544 Titre : Understanding Autism Through Indigenous Relational Ecologies: A Phenomenographic Exploratory Study With Potawatomi Participants Type de document : texte imprimé Auteurs : Jessica C. KITCHENS, Auteur ; Donna WAKE, Auteur Article en page(s) : p.2532-2544 Langues : Anglais (eng) Mots-clés : autism  Indigenous Knowledge Systems  phenomenography  decolonizing leadership  relational ontology  Potawatomi Index. décimale : PER Périodiques Résumé : Autism is commonly conceptualized in research, policy, and clinical contexts as an individual condition defined by diagnostic criteria and functional impairment. While these frameworks shape access to services, they often obscure relational, cultural, and contextual meanings of autism, particularly within Indigenous communities. This article reports findings from an exploratory phenomenographic study examining how autism is understood among five Citizen Potawatomi Nation participants. Guided by Indigenous Knowledge Systems, decolonial leadership, relational epistemologies, and a neurodiversity-affirming paradigm, the study examined qualitative variation in meaning-making rather than consensus or generalizability. Semi-structured interviews were conducted with Autistic adults, parents of Autistic children, and a tribal Knowledge Keeper. Analysis followed Åkerlind’s interpretive phenomenographic approach, resulting in five categories of description illustrating coexisting understandings of autism: system-managed difference, intergenerational family patterning, natural human variation, relational identity and belonging, and spiritual gift with purpose. These categories were organized into an outcome space reflecting a relational ecology of meaning. Findings demonstrate that autism is understood within Potawatomi contexts through intergenerational continuity, relational belonging, and culturally grounded purpose, challenging deficit-based and universalizing frameworks. The study highlights the value of phenomenography for Indigenous autism research and informs future Nation-engaged, relationally accountable inquiry.Lay Abstract Autism is often described in medical, educational, and policy settings as a problem located within an individual. This study explored how five Citizen Potawatomi Nation participants understand autism, including Autistic adults, parents of Autistic children, and a tribal Knowledge Keeper. Rather than seeking one shared definition, the study examined different ways autism is understood based on lived experience, relationships, and cultural teachings. Participants described autism as shaped by health care and school systems, as a pattern across families and generations, as a natural part of human diversity, as part of identity and belonging, and as a spiritually meaningful difference with cultural purpose. The findings suggest that dominant Western frameworks may miss relational, cultural, and spiritual meanings that matter in Potawatomi contexts. Recognizing these meanings can support respectful research and more responsive approaches to education, health care, and community support. En ligne : https://dx.doi.org/10.1177/13623613261470856 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Understanding Autism Through Indigenous Relational Ecologies: A Phenomenographic Exploratory Study With Potawatomi Participants [texte imprimé] / Jessica C. KITCHENS, Auteur ; Donna WAKE, Auteur . - p.2532-2544. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2532-2544 Mots-clés : autism  Indigenous Knowledge Systems  phenomenography  decolonizing leadership  relational ontology  Potawatomi Index. décimale : PER Périodiques Résumé : Autism is commonly conceptualized in research, policy, and clinical contexts as an individual condition defined by diagnostic criteria and functional impairment. While these frameworks shape access to services, they often obscure relational, cultural, and contextual meanings of autism, particularly within Indigenous communities. This article reports findings from an exploratory phenomenographic study examining how autism is understood among five Citizen Potawatomi Nation participants. Guided by Indigenous Knowledge Systems, decolonial leadership, relational epistemologies, and a neurodiversity-affirming paradigm, the study examined qualitative variation in meaning-making rather than consensus or generalizability. Semi-structured interviews were conducted with Autistic adults, parents of Autistic children, and a tribal Knowledge Keeper. Analysis followed Åkerlind’s interpretive phenomenographic approach, resulting in five categories of description illustrating coexisting understandings of autism: system-managed difference, intergenerational family patterning, natural human variation, relational identity and belonging, and spiritual gift with purpose. These categories were organized into an outcome space reflecting a relational ecology of meaning. Findings demonstrate that autism is understood within Potawatomi contexts through intergenerational continuity, relational belonging, and culturally grounded purpose, challenging deficit-based and universalizing frameworks. The study highlights the value of phenomenography for Indigenous autism research and informs future Nation-engaged, relationally accountable inquiry.Lay Abstract Autism is often described in medical, educational, and policy settings as a problem located within an individual. This study explored how five Citizen Potawatomi Nation participants understand autism, including Autistic adults, parents of Autistic children, and a tribal Knowledge Keeper. Rather than seeking one shared definition, the study examined different ways autism is understood based on lived experience, relationships, and cultural teachings. Participants described autism as shaped by health care and school systems, as a pattern across families and generations, as a natural part of human diversity, as part of identity and belonging, and as a spiritually meaningful difference with cultural purpose. The findings suggest that dominant Western frameworks may miss relational, cultural, and spiritual meanings that matter in Potawatomi contexts. Recognizing these meanings can support respectful research and more responsive approaches to education, health care, and community support. En ligne : https://dx.doi.org/10.1177/13623613261470856 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Special Interests in Autism: Functions, Benefits, and Challenges / Mareike BAYER in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2545-2557 Titre : Special Interests in Autism: Functions, Benefits, and Challenges Type de document : texte imprimé Auteurs : Mareike BAYER, Auteur ; Isabel DZIOBEK, Auteur Article en page(s) : p.2545-2557 Langues : Anglais (eng) Mots-clés : special interests  emotion regulation  resources  self  stigma Index. décimale : PER Périodiques Résumé : Special interests are a highly prevalent feature of autism spectrum conditions (ASC) and have long been described primarily from a deficit-oriented perspective. More recent work has pointed to their potential as psychological resources, yet systematic evidence and direct comparisons with non-autistic groups remain limited. The present study examined the significance of special interests for well-being, self-related aspects and emotion regulation in autistic adults, as well as negative consequences and stigma. Furthermore, we directly compared the likelihood of engaging in special interests versus seeking social contact across a range of emotional contexts. A total of 182 participants (60 autistic and 122 non-autistic) completed an online survey on multiple aspects of their (special) interests and measures of social anxiety and self-esteem. Autistic individuals reported a stronger role of special interests in emotion regulation and as a source of learning and knowledge, while also experiencing greater stigma and negative consequences compared with non-autistic participants. Autistic participants further showed a higher likelihood of relying on their interests as a coping strategy in negative and exhausting situations, highlighting their particular relevance for emotion regulation. Our findings emphasize the unique functions of special interests in autism and point to their therapeutic potential as adaptive resources.Lay Abstract Many autistic people have special interests – topics or activities they pursue with great passion. We asked autistic and non-autistic adults how meaningful their interests are and how they use them in different emotional situations. Autistic people reported that interests are especially helpful for coping with stress and regulating emotions, and that they are an important source of learning and knowledge. On the other hand, autistic individuals also experienced more stigma and negative reactions from others than non-autistic individuals. Our findings show that special interests are an important source of well-being and should be recognized as a valuable resource in autism. En ligne : https://dx.doi.org/10.1177/13623613261471572 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Special Interests in Autism: Functions, Benefits, and Challenges [texte imprimé] / Mareike BAYER, Auteur ; Isabel DZIOBEK, Auteur . - p.2545-2557. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2545-2557 Mots-clés : special interests  emotion regulation  resources  self  stigma Index. décimale : PER Périodiques Résumé : Special interests are a highly prevalent feature of autism spectrum conditions (ASC) and have long been described primarily from a deficit-oriented perspective. More recent work has pointed to their potential as psychological resources, yet systematic evidence and direct comparisons with non-autistic groups remain limited. The present study examined the significance of special interests for well-being, self-related aspects and emotion regulation in autistic adults, as well as negative consequences and stigma. Furthermore, we directly compared the likelihood of engaging in special interests versus seeking social contact across a range of emotional contexts. A total of 182 participants (60 autistic and 122 non-autistic) completed an online survey on multiple aspects of their (special) interests and measures of social anxiety and self-esteem. Autistic individuals reported a stronger role of special interests in emotion regulation and as a source of learning and knowledge, while also experiencing greater stigma and negative consequences compared with non-autistic participants. Autistic participants further showed a higher likelihood of relying on their interests as a coping strategy in negative and exhausting situations, highlighting their particular relevance for emotion regulation. Our findings emphasize the unique functions of special interests in autism and point to their therapeutic potential as adaptive resources.Lay Abstract Many autistic people have special interests – topics or activities they pursue with great passion. We asked autistic and non-autistic adults how meaningful their interests are and how they use them in different emotional situations. Autistic people reported that interests are especially helpful for coping with stress and regulating emotions, and that they are an important source of learning and knowledge. On the other hand, autistic individuals also experienced more stigma and negative reactions from others than non-autistic individuals. Our findings show that special interests are an important source of well-being and should be recognized as a valuable resource in autism. En ligne : https://dx.doi.org/10.1177/13623613261471572 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Linking Emotion Dysregulation to Autistic Traits Across Neurodiverse Samples / Rachel G. MCDONALD in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2558-2569 Titre : Linking Emotion Dysregulation to Autistic Traits Across Neurodiverse Samples Type de document : texte imprimé Auteurs : Rachel G. MCDONALD, Auteur ; Mary Isaac CARGILL, Auteur ; Emily LYNCH, Auteur ; Sadaf KHAWAR, Auteur ; Caroline FREDEN, Auteur ; Erin KANG, Auteur Article en page(s) : p.2558-2569 Langues : Anglais (eng) Mots-clés : emotional dysregulation  social communication  restrictive and repetitive behaviors  autism Index. décimale : PER Périodiques Résumé : Emotion dysregulation (ED) is defined as difficulty regulating emotions in response to activating situations, and subsequent difficulty choosing an environmentally appropriate strategy to modulate one’s emotions. Despite ED being identified as a transdiagnostic construct, little research has examined the links to constructs like social communication and interaction (SCI) and restricted and repetitive behaviors (RRBs). SCIs and RRBs are core components of neurodevelopmental conditions like autism, as well as other mental health conditions more broadly. This article sought to examine the effects of emotional dysphoria and emotional reactivity on SCI and RRBs. Caregivers of 99 youth (64 autistic) ages 6 to 17 completed questionnaires about their child’s ED, SCI, and RRBs. Path models were used to examine ED’s impact on SCI difficulties and RRBs. Results suggest that both SCI and RRBs are affected by ED dysphoria and reactivity, with some differences across autistic and non-autistic groups. These findings can inform treatments for medication management and intervention planning for different profiles of ED in both autistic and non-autistic youth.Lay Abstract Many youth experience struggle with managing their emotions, which is sometimes called emotion dysregulation. Some youth, particularly autistic youth, also experience difficulties with social communication and present with repetitive or restrictive behaviors and interests. However, research has not closely examined how emotional difficulties might be connected to these specific behaviors. This study looked at two distinct types of emotion dysregulation: persistent low or distressed mood (emotional dysphoria) and intense emotional reactions (emotional reactivity). Caregivers of 99 youth aged 6 to 17, including 63 autistic youth, answered questions about child’s emotion regulation, social communication, and repetitive behaviors. The findings show how both types of emotion dysregulation related to greater challenges with social communication and repetitive behaviors, and how there were some differences in how these patterns appear between autistic and non-autistic youth. These findings suggest that addressing emotional difficulties could be an important aspect of supporting youth. Clinicians may benefit from identifying which type of emotional dysregulation a youth experiences to help tailor intervention approaches more effectively for each individual. En ligne : https://dx.doi.org/10.1177/13623613261472147 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Linking Emotion Dysregulation to Autistic Traits Across Neurodiverse Samples [texte imprimé] / Rachel G. MCDONALD, Auteur ; Mary Isaac CARGILL, Auteur ; Emily LYNCH, Auteur ; Sadaf KHAWAR, Auteur ; Caroline FREDEN, Auteur ; Erin KANG, Auteur . - p.2558-2569. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2558-2569 Mots-clés : emotional dysregulation  social communication  restrictive and repetitive behaviors  autism Index. décimale : PER Périodiques Résumé : Emotion dysregulation (ED) is defined as difficulty regulating emotions in response to activating situations, and subsequent difficulty choosing an environmentally appropriate strategy to modulate one’s emotions. Despite ED being identified as a transdiagnostic construct, little research has examined the links to constructs like social communication and interaction (SCI) and restricted and repetitive behaviors (RRBs). SCIs and RRBs are core components of neurodevelopmental conditions like autism, as well as other mental health conditions more broadly. This article sought to examine the effects of emotional dysphoria and emotional reactivity on SCI and RRBs. Caregivers of 99 youth (64 autistic) ages 6 to 17 completed questionnaires about their child’s ED, SCI, and RRBs. Path models were used to examine ED’s impact on SCI difficulties and RRBs. Results suggest that both SCI and RRBs are affected by ED dysphoria and reactivity, with some differences across autistic and non-autistic groups. These findings can inform treatments for medication management and intervention planning for different profiles of ED in both autistic and non-autistic youth.Lay Abstract Many youth experience struggle with managing their emotions, which is sometimes called emotion dysregulation. Some youth, particularly autistic youth, also experience difficulties with social communication and present with repetitive or restrictive behaviors and interests. However, research has not closely examined how emotional difficulties might be connected to these specific behaviors. This study looked at two distinct types of emotion dysregulation: persistent low or distressed mood (emotional dysphoria) and intense emotional reactions (emotional reactivity). Caregivers of 99 youth aged 6 to 17, including 63 autistic youth, answered questions about child’s emotion regulation, social communication, and repetitive behaviors. The findings show how both types of emotion dysregulation related to greater challenges with social communication and repetitive behaviors, and how there were some differences in how these patterns appear between autistic and non-autistic youth. These findings suggest that addressing emotional difficulties could be an important aspect of supporting youth. Clinicians may benefit from identifying which type of emotional dysregulation a youth experiences to help tailor intervention approaches more effectively for each individual. En ligne : https://dx.doi.org/10.1177/13623613261472147 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

A Reliable Effect of Alexithymia, but Not Autism, on Placebo Hypoalgesia / Eri ICHIJO in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2570-2583 Titre : A Reliable Effect of Alexithymia, but Not Autism, on Placebo Hypoalgesia Type de document : texte imprimé Auteurs : Eri ICHIJO, Auteur ; Michel-Pierre COLL, Auteur ; Caroline CATMUR, Auteur ; Geoffrey BIRD, Auteur Article en page(s) : p.2570-2583 Langues : Anglais (eng) Mots-clés : placebo  pain  autism  alexithymia  interoception Index. décimale : PER Périodiques Résumé : Perception of pain can be altered by one’s expectations of that pain, producing well-known phenomena such as placebo effects. It has been suggested that perceptual inference functions differently in autism, with perception weighted towards bottom-up sensory evidence rather than top-down expectations. This account would predict reduced placebo effects in autism. However, research also indicates that atypical interoception (perception of bodily sensations) in autism may be better explained by co-occurring alexithymia. This latter finding suggests that any differences in perceptual inference in autism, at least within the interoceptive domain, may be a product of co-occurring alexithymia. We conducted a study in London and Oxford, England, using a placebo hypoalgesia paradigm to assess perceptual inferences in autism and alexithymia. This paradigm permits manipulation of expectations (concerning the magnitude of pain relief) while measuring individual differences in the perception of stimuli (perceived pain). We investigated whether the magnitude of the placebo effect could be explained by autistic and/or alexithymic traits. Ninety-six adults, including autistic people (n = 28), alexithymic people (n = 25), and non-autistic, non-alexithymic people (n = 55) participated in the study. Results showed that alexithymia and trait anxiety were reliable predictors of the magnitude of the placebo effect, but any effect of autism was weaker and unreliable. Results suggest that atypical interoception in alexithymia may explain differences previously thought to relate to autism.Lay Abstract Perception of pain can be altered by how one expects that pain to feel, producing well-known phenomena such as placebo effects. Placebo effects occur when a painful sensation is experienced as less painful than it otherwise would be, simply because we expect it to be less painful. Recently, researchers have suggested that the effect of expectation on how we perceive the world is different among the autistic population compared to non-autistic people. We therefore aimed to investigate whether this is the case for pain perception.We conducted a study where we were able to change people’s expectations about how painful an electric shock would be, to see whether this would affect pain perception, and see whether the effect of expectations differs between autistic and non-autistic people. We were also interested in looking at the effect of alexithymia (difficulties in identifying and describing one’s own emotions), which is suggested to affect pain perception and is prevalent in the autistic population.We found that alexithymia and anxiety predicted how susceptible someone was to the placebo effect (i.e., how much expecting a shock would not be painful affected one’s pain perception). These effects were greater than any effect of autism, which was small and unreliable. This study adds to previous research which shows that many of the differences between autistic people and non-autistic people in terms of perceiving bodily sensations, including pain, may be better explained by alexithymia than autism. En ligne : https://dx.doi.org/10.1177/13623613261472929 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] A Reliable Effect of Alexithymia, but Not Autism, on Placebo Hypoalgesia [texte imprimé] / Eri ICHIJO, Auteur ; Michel-Pierre COLL, Auteur ; Caroline CATMUR, Auteur ; Geoffrey BIRD, Auteur . - p.2570-2583. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2570-2583 Mots-clés : placebo  pain  autism  alexithymia  interoception Index. décimale : PER Périodiques Résumé : Perception of pain can be altered by one’s expectations of that pain, producing well-known phenomena such as placebo effects. It has been suggested that perceptual inference functions differently in autism, with perception weighted towards bottom-up sensory evidence rather than top-down expectations. This account would predict reduced placebo effects in autism. However, research also indicates that atypical interoception (perception of bodily sensations) in autism may be better explained by co-occurring alexithymia. This latter finding suggests that any differences in perceptual inference in autism, at least within the interoceptive domain, may be a product of co-occurring alexithymia. We conducted a study in London and Oxford, England, using a placebo hypoalgesia paradigm to assess perceptual inferences in autism and alexithymia. This paradigm permits manipulation of expectations (concerning the magnitude of pain relief) while measuring individual differences in the perception of stimuli (perceived pain). We investigated whether the magnitude of the placebo effect could be explained by autistic and/or alexithymic traits. Ninety-six adults, including autistic people (n = 28), alexithymic people (n = 25), and non-autistic, non-alexithymic people (n = 55) participated in the study. Results showed that alexithymia and trait anxiety were reliable predictors of the magnitude of the placebo effect, but any effect of autism was weaker and unreliable. Results suggest that atypical interoception in alexithymia may explain differences previously thought to relate to autism.Lay Abstract Perception of pain can be altered by how one expects that pain to feel, producing well-known phenomena such as placebo effects. Placebo effects occur when a painful sensation is experienced as less painful than it otherwise would be, simply because we expect it to be less painful. Recently, researchers have suggested that the effect of expectation on how we perceive the world is different among the autistic population compared to non-autistic people. We therefore aimed to investigate whether this is the case for pain perception.We conducted a study where we were able to change people’s expectations about how painful an electric shock would be, to see whether this would affect pain perception, and see whether the effect of expectations differs between autistic and non-autistic people. We were also interested in looking at the effect of alexithymia (difficulties in identifying and describing one’s own emotions), which is suggested to affect pain perception and is prevalent in the autistic population.We found that alexithymia and anxiety predicted how susceptible someone was to the placebo effect (i.e., how much expecting a shock would not be painful affected one’s pain perception). These effects were greater than any effect of autism, which was small and unreliable. This study adds to previous research which shows that many of the differences between autistic people and non-autistic people in terms of perceiving bodily sensations, including pain, may be better explained by alexithymia than autism. En ligne : https://dx.doi.org/10.1177/13623613261472929 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis / E. ZHANG in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2584-2595 Titre : Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis Type de document : texte imprimé Auteurs : E. ZHANG, Auteur ; Makenna SNYDER, Auteur ; Wafaa ALDURAIDI, Auteur ; Spencer HUNLEY, Auteur ; Kristin SOHL, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Eve-Lynn NELSON, Auteur Article en page(s) : p.2584-2595 Langues : Anglais (eng) Mots-clés : autism  health care transition  rural  urban  adolescent  young adult Index. décimale : PER Périodiques Résumé : Health care transition (HCT) is underexplored among autistic adolescents and young adults (AYAs). We explored autistic AYAs’ HCT experiences through virtual semi-structured interviews with 19 participants (mean age = 21.4 years; range = 15–25). Data were analyzed using reflexive thematic analysis and interpreted through self-determination theory (SDT). Participants described HCT as marked by increased expectations for independent health care management without commensurate preparation, relational continuity, or structural support. Findings were organized around SDT domains of competence, autonomy, and relatedness, which were interconnected. Gaps in competence constrained autonomy and contributed to stress and care avoidance. Autonomy was negotiated and situational, often supported through ongoing caregiver involvement rather than full independence. Relatedness was undermined by fragmented care, limited continuity, and experiences of being dismissed by providers. Structural factors (transportation, insurance acceptance, provider availability, and rurality) shaped when and how these psychological needs could be met, amplifying transition-related challenges. Autistic AYAs want to take ownership of their care, but successful HCT depends on developmentally scaffolded skill-building, supportive interdependence, and health systems that foster competence, autonomy, and relatedness. Findings highlight the need for autism-responsive HCT models that incorporate gradual preparation, provider training, caregiver-supported autonomy, and structural accommodations, particularly in rural communities.Lay Abstract Moving from pediatric to adult health care can be challenging for autistic adolescents and young adults, especially in rural areas. We interviewed 19 autistic participants ages 15 to 25 to understand their experiences of health care transition. We analyzed interviews to identify themes and organized findings around three needs: feeling capable of managing health care (skills and confidence), having appropriate choice and control, and feeling supported and taken seriously by health care providers. Participants often described being expected to manage appointments, medications, and communication with providers more independently, without enough preparation or clear guidance. Many reported that limited skills or confidence made it harder to take charge of their care and contributed to stress and sometimes avoiding care. Independence was not “all-or-nothing”: participants described sharing responsibilities with caregivers in ways that changed across situations, rather than becoming fully independent at once. Participants also described challenges with continuity and relationships such as switching providers, fragmented services, and feeling dismissed, making it harder to feel understood and supported. Practical barriers shaped these experiences, including transportation, whether providers accepted insurance, limited local providers, and rural distance. Overall, participants wanted to take more ownership of their health, but they emphasized the need for step-by-step skill-building, supportive shared responsibility with caregivers, and health care systems that help autistic young people feel capable, in control, and supported, especially in rural communities. En ligne : https://dx.doi.org/10.1177/13623613261472991 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis [texte imprimé] / E. ZHANG, Auteur ; Makenna SNYDER, Auteur ; Wafaa ALDURAIDI, Auteur ; Spencer HUNLEY, Auteur ; Kristin SOHL, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Eve-Lynn NELSON, Auteur . - p.2584-2595. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2584-2595 Mots-clés : autism  health care transition  rural  urban  adolescent  young adult Index. décimale : PER Périodiques Résumé : Health care transition (HCT) is underexplored among autistic adolescents and young adults (AYAs). We explored autistic AYAs’ HCT experiences through virtual semi-structured interviews with 19 participants (mean age = 21.4 years; range = 15–25). Data were analyzed using reflexive thematic analysis and interpreted through self-determination theory (SDT). Participants described HCT as marked by increased expectations for independent health care management without commensurate preparation, relational continuity, or structural support. Findings were organized around SDT domains of competence, autonomy, and relatedness, which were interconnected. Gaps in competence constrained autonomy and contributed to stress and care avoidance. Autonomy was negotiated and situational, often supported through ongoing caregiver involvement rather than full independence. Relatedness was undermined by fragmented care, limited continuity, and experiences of being dismissed by providers. Structural factors (transportation, insurance acceptance, provider availability, and rurality) shaped when and how these psychological needs could be met, amplifying transition-related challenges. Autistic AYAs want to take ownership of their care, but successful HCT depends on developmentally scaffolded skill-building, supportive interdependence, and health systems that foster competence, autonomy, and relatedness. Findings highlight the need for autism-responsive HCT models that incorporate gradual preparation, provider training, caregiver-supported autonomy, and structural accommodations, particularly in rural communities.Lay Abstract Moving from pediatric to adult health care can be challenging for autistic adolescents and young adults, especially in rural areas. We interviewed 19 autistic participants ages 15 to 25 to understand their experiences of health care transition. We analyzed interviews to identify themes and organized findings around three needs: feeling capable of managing health care (skills and confidence), having appropriate choice and control, and feeling supported and taken seriously by health care providers. Participants often described being expected to manage appointments, medications, and communication with providers more independently, without enough preparation or clear guidance. Many reported that limited skills or confidence made it harder to take charge of their care and contributed to stress and sometimes avoiding care. Independence was not “all-or-nothing”: participants described sharing responsibilities with caregivers in ways that changed across situations, rather than becoming fully independent at once. Participants also described challenges with continuity and relationships such as switching providers, fragmented services, and feeling dismissed, making it harder to feel understood and supported. Practical barriers shaped these experiences, including transportation, whether providers accepted insurance, limited local providers, and rural distance. Overall, participants wanted to take more ownership of their health, but they emphasized the need for step-by-step skill-building, supportive shared responsibility with caregivers, and health care systems that help autistic young people feel capable, in control, and supported, especially in rural communities. En ligne : https://dx.doi.org/10.1177/13623613261472991 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Age at Autism Diagnosis in the Norwegian Mother, Father, and Child Cohort Study (MoBa): Exploring the Association With Family Well-Being / Bernt Damian GLASER in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2596-2609 Titre : Age at Autism Diagnosis in the Norwegian Mother, Father, and Child Cohort Study (MoBa): Exploring the Association With Family Well-Being Type de document : texte imprimé Auteurs : Bernt Damian GLASER, Auteur ; Meseret Mamo BAZEZEW, Auteur ; Daniela BRAGANTINI, Auteur ; Laura Elizabeth HEGEMANN, Auteur ; Stian ORM, Auteur ; Morgan James MORGAN, Auteur ; Somer L. BISHOP, Auteur ; Stian Barbo VALAND, Auteur ; Laurie John HANNIGAN, Auteur ; Alexandra HAVDAHL, Auteur Article en page(s) : p.2596-2609 Langues : Anglais (eng) Mots-clés : autism  diagnosis  well-being  family functioning and support  school-age children  adolescents  parents  MoBa  the Norwegian Mother  Father and Child Cohort Study Index. décimale : PER Périodiques Résumé : For many autistic individuals, close family members represent a crucial source of support throughout their lifetime. Early autism diagnosis is thought to benefit both autistic individuals and their family members by facilitating early access to services and information. However, little research has empirically studied the relationship between age at diagnosis and well-being among autistic individuals and their family members. In this study, we examined predictors of age at autism diagnosis and its relationship with family well-being using the population-based Norwegian Mother, Father, and Child Cohort Study (MoBa). We found that the most important factors associated with a later age at diagnosis were fewer social communication difficulties at age three, fewer maternal concerns about development in early childhood, absence of a co-occurring intellectual disability diagnosis, female sex, and having older siblings. While a later age at diagnosis was associated with higher well-being for mothers and children during childhood, it was associated with lower well-being for children during adolescence. All associations were substantially attenuated after adjustment for various clinical, demographic, and genetic factors – reflecting complex patterns of confounding. We argue that future research should aim to leverage public awareness campaigns, screening programmes, or changes in clinical practice to understand the causal mechanisms underlying these relationships.Lay abstract Family members of autistic people are often an important source of support for their well-being. An earlier autism diagnosis might be helpful for autistic individuals and their families, because families might receive professional support sooner. However, the impact of an earlier diagnosis is difficult to study, because many child and family characteristics that lead to an earlier autism diagnosis may have their own influence on well-being in autistic individuals and their families. In this study, we look at how age at diagnosis and family well-being are related and how they both relate to different child and family characteristics. We find that children, on average, receive a later autism diagnosis when they have fewer social communication difficulties and fewer maternal concerns in early childhood, do not also have an intellectual disability diagnosis, are a girl, or have older siblings. We also found that a later autism diagnosis was associated with higher well-being for children and mothers in childhood but with lower well-being for children in adolescence. When we compared families with similar child and family characteristics, we no longer saw such clear links between age at diagnosis and well-being. This might be because of the complex mixture of influences child and family characteristics have on both age at diagnosis and well-being and suggests that other types of study may be better for investigating the impact of age at diagnosis on well-being in families. En ligne : https://dx.doi.org/10.1177/13623613261474929 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Age at Autism Diagnosis in the Norwegian Mother, Father, and Child Cohort Study (MoBa): Exploring the Association With Family Well-Being [texte imprimé] / Bernt Damian GLASER, Auteur ; Meseret Mamo BAZEZEW, Auteur ; Daniela BRAGANTINI, Auteur ; Laura Elizabeth HEGEMANN, Auteur ; Stian ORM, Auteur ; Morgan James MORGAN, Auteur ; Somer L. BISHOP, Auteur ; Stian Barbo VALAND, Auteur ; Laurie John HANNIGAN, Auteur ; Alexandra HAVDAHL, Auteur . - p.2596-2609. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2596-2609 Mots-clés : autism  diagnosis  well-being  family functioning and support  school-age children  adolescents  parents  MoBa  the Norwegian Mother  Father and Child Cohort Study Index. décimale : PER Périodiques Résumé : For many autistic individuals, close family members represent a crucial source of support throughout their lifetime. Early autism diagnosis is thought to benefit both autistic individuals and their family members by facilitating early access to services and information. However, little research has empirically studied the relationship between age at diagnosis and well-being among autistic individuals and their family members. In this study, we examined predictors of age at autism diagnosis and its relationship with family well-being using the population-based Norwegian Mother, Father, and Child Cohort Study (MoBa). We found that the most important factors associated with a later age at diagnosis were fewer social communication difficulties at age three, fewer maternal concerns about development in early childhood, absence of a co-occurring intellectual disability diagnosis, female sex, and having older siblings. While a later age at diagnosis was associated with higher well-being for mothers and children during childhood, it was associated with lower well-being for children during adolescence. All associations were substantially attenuated after adjustment for various clinical, demographic, and genetic factors – reflecting complex patterns of confounding. We argue that future research should aim to leverage public awareness campaigns, screening programmes, or changes in clinical practice to understand the causal mechanisms underlying these relationships.Lay abstract Family members of autistic people are often an important source of support for their well-being. An earlier autism diagnosis might be helpful for autistic individuals and their families, because families might receive professional support sooner. However, the impact of an earlier diagnosis is difficult to study, because many child and family characteristics that lead to an earlier autism diagnosis may have their own influence on well-being in autistic individuals and their families. In this study, we look at how age at diagnosis and family well-being are related and how they both relate to different child and family characteristics. We find that children, on average, receive a later autism diagnosis when they have fewer social communication difficulties and fewer maternal concerns in early childhood, do not also have an intellectual disability diagnosis, are a girl, or have older siblings. We also found that a later autism diagnosis was associated with higher well-being for children and mothers in childhood but with lower well-being for children in adolescence. When we compared families with similar child and family characteristics, we no longer saw such clear links between age at diagnosis and well-being. This might be because of the complex mixture of influences child and family characteristics have on both age at diagnosis and well-being and suggests that other types of study may be better for investigating the impact of age at diagnosis on well-being in families. En ligne : https://dx.doi.org/10.1177/13623613261474929 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

English-Language Autism Terminology Preferences of Autistic People and their Parents in the United States: Clustering Illuminates Diverse Views / Patrick DWYER in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2610-2627 Titre : English-Language Autism Terminology Preferences of Autistic People and their Parents in the United States: Clustering Illuminates Diverse Views Type de document : texte imprimé Auteurs : Patrick DWYER, Auteur ; Zachary J. WILLIAMS, Auteur ; Jennifer E. MAGNUSON, Auteur ; Tiffany G. WOYNAROSKI, Auteur Article en page(s) : p.2610-2627 Langues : Anglais (eng) Mots-clés : identity-first language  person-first language  terminology  autism  pathologising language  functioning labels  profound autism  Asperger’s syndrome Index. décimale : PER Périodiques Résumé : Autism terminology preferences are the subject of considerable debate and various studies, the results of which sometimes conflict. This study examined diversity in terminology preferences in a U.S. sample of 3,181 non-autistic parents and 2,098 autistic people (including 451 autistic parents). The study also examined a particularly wide range of language issues: participants rated terms for autism, possible subgroups within autism, autistic people, autism likelihood, and autistic characteristics. Non-autistic parents’, autistic parents’, and autistic non-parents’ terminology ratings differed, but generally modestly. Using clustering to explore response patterns revealed greater variability. Almost half of the participants were grouped in the Open Cluster, characterised by liking or neutrality towards most terms. Others were grouped in the Identity-First Cluster, characterised by support for identity-first language, strong opposition to terms for possible autism subgroups, and rejection of many pathologising terms. Other participants were in the Person-First Cluster, characterised by support for person-first language, yet still some scepticism towards terms for possible autism subgroups. Autistic participants were overrepresented in the Identity-First Cluster, while non-autistic parents were overrepresented in the Person-First Cluster. These results suggest that there is presently no consensus regarding autism terminology preferences in the United States.Community Abstract Why was this study done? It is important to respect how members of any community want to be talked about. However, previous studies about terminology preferences in the autism community sometimes provide different results. These conflicting results suggest that prior studies are not always capturing the diversity of terminology preferences in the autism community.What did the researchers do? We recruited large groups of autistic and non-autistic people in the United States. We asked them to rate different terms for talking about autism, subgroups within autism, autistic people, characteristics of autism, and the likelihood that somebody will later be diagnosed with autism.We then clustered the data, which means we let participants’ responses sort themselves into clusters of similar responses. This allowed us to highlight the diversity of people’s views.What did the researchers find? We found some terms that almost everyone liked, such as “autism,” and other terms or phrases that almost everyone disliked, such as “person suffering from autism.” However, most terms were liked by some people and disliked by others.We describe an “Open Cluster” of participants who like or have neutral feelings towards most terms.We describe an “Identity-First Cluster” of participants who like identity-first language and dislike terms for subgroups within autism. Identity-First cluster members also disliked many terms that imply autism is a bad thing, like “risk” for autism.Finally, we describe a “Person-First Cluster” of participants who like person-first language. Person-First Cluster members disliked some terms for subgroups within autism, but not as strongly as Identity-First Cluster members did.What are the implications? This study shows that autism community members do not always agree about terminology. This means that it is important to be thoughtful and considerate in how we talk about autism. En ligne : https://dx.doi.org/10.1177/13623613261475023 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] English-Language Autism Terminology Preferences of Autistic People and their Parents in the United States: Clustering Illuminates Diverse Views [texte imprimé] / Patrick DWYER, Auteur ; Zachary J. WILLIAMS, Auteur ; Jennifer E. MAGNUSON, Auteur ; Tiffany G. WOYNAROSKI, Auteur . - p.2610-2627. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2610-2627 Mots-clés : identity-first language  person-first language  terminology  autism  pathologising language  functioning labels  profound autism  Asperger’s syndrome Index. décimale : PER Périodiques Résumé : Autism terminology preferences are the subject of considerable debate and various studies, the results of which sometimes conflict. This study examined diversity in terminology preferences in a U.S. sample of 3,181 non-autistic parents and 2,098 autistic people (including 451 autistic parents). The study also examined a particularly wide range of language issues: participants rated terms for autism, possible subgroups within autism, autistic people, autism likelihood, and autistic characteristics. Non-autistic parents’, autistic parents’, and autistic non-parents’ terminology ratings differed, but generally modestly. Using clustering to explore response patterns revealed greater variability. Almost half of the participants were grouped in the Open Cluster, characterised by liking or neutrality towards most terms. Others were grouped in the Identity-First Cluster, characterised by support for identity-first language, strong opposition to terms for possible autism subgroups, and rejection of many pathologising terms. Other participants were in the Person-First Cluster, characterised by support for person-first language, yet still some scepticism towards terms for possible autism subgroups. Autistic participants were overrepresented in the Identity-First Cluster, while non-autistic parents were overrepresented in the Person-First Cluster. These results suggest that there is presently no consensus regarding autism terminology preferences in the United States.Community Abstract Why was this study done? It is important to respect how members of any community want to be talked about. However, previous studies about terminology preferences in the autism community sometimes provide different results. These conflicting results suggest that prior studies are not always capturing the diversity of terminology preferences in the autism community.What did the researchers do? We recruited large groups of autistic and non-autistic people in the United States. We asked them to rate different terms for talking about autism, subgroups within autism, autistic people, characteristics of autism, and the likelihood that somebody will later be diagnosed with autism.We then clustered the data, which means we let participants’ responses sort themselves into clusters of similar responses. This allowed us to highlight the diversity of people’s views.What did the researchers find? We found some terms that almost everyone liked, such as “autism,” and other terms or phrases that almost everyone disliked, such as “person suffering from autism.” However, most terms were liked by some people and disliked by others.We describe an “Open Cluster” of participants who like or have neutral feelings towards most terms.We describe an “Identity-First Cluster” of participants who like identity-first language and dislike terms for subgroups within autism. Identity-First cluster members also disliked many terms that imply autism is a bad thing, like “risk” for autism.Finally, we describe a “Person-First Cluster” of participants who like person-first language. Person-First Cluster members disliked some terms for subgroups within autism, but not as strongly as Identity-First Cluster members did.What are the implications? This study shows that autism community members do not always agree about terminology. This means that it is important to be thoughtful and considerate in how we talk about autism. En ligne : https://dx.doi.org/10.1177/13623613261475023 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults / Christina NICOLAIDIS in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2628-2647 Titre : Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults Type de document : texte imprimé Auteurs : Christina NICOLAIDIS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Mirah SCHARER, Auteur ; Joelle MASLAK, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Willi HORNER-JOHNSON, Auteur ; Julia LOVE, Auteur ; Dora M. RAYMAKER, Auteur ; Andrea JOYCE, Auteur ; Shannon DES ROCHES ROSA, Auteur ; Grace A. HERBERT, Auteur ; Julie Lounds TAYLOR, Auteur ; Liu-Qin YANG, Auteur ; Katherine MCDONALD, Auteur ; Zack SIDDEEK, Auteur ; Steven K. KAPP, Auteur ; Emanuel FROWNER, Auteur ; Ivanova SMITH, Auteur ; Anna Furra WALLINGTON, Auteur ; K.J. FLORES, Auteur ; Noah KAUFMAN, Auteur ; Clarissa KRIPKE, Auteur ; Joseph VERA, Auteur ; Vivian D. GRILLO, Auteur ; Finn GARDINER, Auteur Article en page(s) : p.2628-2647 Langues : Anglais (eng) Mots-clés : adults  populations  outcome measurement  methods  community based participatory research  participatory methods  longitudinal research  health services  contexts Index. décimale : PER Périodiques Résumé : Adult autism services research is plagued by methodological challenges, including difficulty obtaining representative or heterogeneous samples and a frequent mismatch between experimental methodologies and real-world settings. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Outcomes Project used a community-based participatory research (CBPR) approach to (a) create the AASPIRE Measurement Toolkit – a set of self- and caregiver-reported accessible outcome measures to evaluate health and social services and (b) explore factors predicting changes in outcomes. We previously used a CBPR-nested Delphi process to identify high-priority outcomes and adapted or created instruments to measure them. We conducted a longitudinal survey to validate these measures in a pragmatic sample of autistic adults with subcohorts from two health care systems, two disability service systems, and the larger autistic community in the United States. This article (a) describes our study methods and the sample’s baseline characteristics and (b) compares characteristics among participants in the separate subcohorts and sites. We collected baseline data from 870 participants. Follow-up response rates were >80% for the second and third time points. The sample includes strong heterogeneity. As expected, sample characteristics differed markedly between the three subcohorts. Lessons from our experience may help other researchers devise strategies to effectively recruit heterogeneous samples of autistic adults across various settings.Lay Abstract There are many challenges that can get in the way of doing good research on autism in adulthood. Examples of these types of challenges include the following: (a) it can be hard to include autistic people with a wide range of characteristics in research studies and (b) traditional research may come up with results that do not really apply to people in the real world. Academic Autism Spectrum Partnership in Research and Education (AASPIRE) is a group of academics and autistic community members who work together as equal partners. We are creating the AASPIRE Measurement Toolkit, an accessible set of survey measures about the health and life outcomes most important to autistic adults. In an earlier part of the project, we worked together to create the measures in the Toolkit. Now we are doing a big survey study to test the new measures and look at what predicts changes in outcomes over time. This article describes our study methods and the characteristics of the people in the sample. It also compares basic information about people recruited to the study from different places, using different methods. We recruited 870 autistic adults from two health care centers (the health care subgroup); two disability services systems (the disability subgroup); and the broader autistic community. We collected data from each person three times over 12 to 18 months. Over 80% of study participants did the follow-up surveys. People in the study had a wide range of personal and disability-related characteristics. As we predicted, the three subgroups were really different from each other. Even the two sites within the subgroups were a bit different. This serves as a warning to researchers: results that come from people recruited from one setting may not apply to people in other settings. It also shows how using multiple different strategies at the same time can increase the diversity in study samples. En ligne : https://dx.doi.org/10.1177/13623613261476381 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults [texte imprimé] / Christina NICOLAIDIS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Mirah SCHARER, Auteur ; Joelle MASLAK, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Willi HORNER-JOHNSON, Auteur ; Julia LOVE, Auteur ; Dora M. RAYMAKER, Auteur ; Andrea JOYCE, Auteur ; Shannon DES ROCHES ROSA, Auteur ; Grace A. HERBERT, Auteur ; Julie Lounds TAYLOR, Auteur ; Liu-Qin YANG, Auteur ; Katherine MCDONALD, Auteur ; Zack SIDDEEK, Auteur ; Steven K. KAPP, Auteur ; Emanuel FROWNER, Auteur ; Ivanova SMITH, Auteur ; Anna Furra WALLINGTON, Auteur ; K.J. FLORES, Auteur ; Noah KAUFMAN, Auteur ; Clarissa KRIPKE, Auteur ; Joseph VERA, Auteur ; Vivian D. GRILLO, Auteur ; Finn GARDINER, Auteur . - p.2628-2647. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2628-2647 Mots-clés : adults  populations  outcome measurement  methods  community based participatory research  participatory methods  longitudinal research  health services  contexts Index. décimale : PER Périodiques Résumé : Adult autism services research is plagued by methodological challenges, including difficulty obtaining representative or heterogeneous samples and a frequent mismatch between experimental methodologies and real-world settings. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Outcomes Project used a community-based participatory research (CBPR) approach to (a) create the AASPIRE Measurement Toolkit – a set of self- and caregiver-reported accessible outcome measures to evaluate health and social services and (b) explore factors predicting changes in outcomes. We previously used a CBPR-nested Delphi process to identify high-priority outcomes and adapted or created instruments to measure them. We conducted a longitudinal survey to validate these measures in a pragmatic sample of autistic adults with subcohorts from two health care systems, two disability service systems, and the larger autistic community in the United States. This article (a) describes our study methods and the sample’s baseline characteristics and (b) compares characteristics among participants in the separate subcohorts and sites. We collected baseline data from 870 participants. Follow-up response rates were >80% for the second and third time points. The sample includes strong heterogeneity. As expected, sample characteristics differed markedly between the three subcohorts. Lessons from our experience may help other researchers devise strategies to effectively recruit heterogeneous samples of autistic adults across various settings.Lay Abstract There are many challenges that can get in the way of doing good research on autism in adulthood. Examples of these types of challenges include the following: (a) it can be hard to include autistic people with a wide range of characteristics in research studies and (b) traditional research may come up with results that do not really apply to people in the real world. Academic Autism Spectrum Partnership in Research and Education (AASPIRE) is a group of academics and autistic community members who work together as equal partners. We are creating the AASPIRE Measurement Toolkit, an accessible set of survey measures about the health and life outcomes most important to autistic adults. In an earlier part of the project, we worked together to create the measures in the Toolkit. Now we are doing a big survey study to test the new measures and look at what predicts changes in outcomes over time. This article describes our study methods and the characteristics of the people in the sample. It also compares basic information about people recruited to the study from different places, using different methods. We recruited 870 autistic adults from two health care centers (the health care subgroup); two disability services systems (the disability subgroup); and the broader autistic community. We collected data from each person three times over 12 to 18 months. Over 80% of study participants did the follow-up surveys. People in the study had a wide range of personal and disability-related characteristics. As we predicted, the three subgroups were really different from each other. Even the two sites within the subgroups were a bit different. This serves as a warning to researchers: results that come from people recruited from one setting may not apply to people in other settings. It also shows how using multiple different strategies at the same time can increase the diversity in study samples. En ligne : https://dx.doi.org/10.1177/13623613261476381 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

The Impact of “Harmful Behaviours” on Parents of Autistic Children / Melanie HEYWORTH in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2648-2661 Titre : The Impact of “Harmful Behaviours” on Parents of Autistic Children Type de document : texte imprimé Auteurs : Melanie HEYWORTH, Auteur ; Diana Weiting TAN, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.2648-2661 Langues : Anglais (eng) Mots-clés : autism  parents  harmful behaviours  externalising behaviours  trauma Index. décimale : PER Périodiques Résumé : In existing literature, an Autistic child’s “externalising behaviour” (e.g., aggression, defiance) is often associated with poor parental mental health outcomes. Yet few studies have considered the extent and nature of the impact of a child’s harmful behaviours (physical harm to self, others, and property) on parents qualitatively. Here, we examined how Autistic and non-autistic parents conceptualise their Autistic children’s harmful behaviours, and the impact of such behaviours on parents. We analysed 39 Autistic and non-autistic parent interviews using reflexive thematic analysis, from which we identified four themes. Theme 1 encompassed parents’ experiences of their children’s harmful behaviours. Theme 2 captured parents’ explanations for their children’s harmful behaviours, which they understood as indicating intense distress. In Theme 3, parents reflected on their responses to periods of crisis, during which they prioritised safety but acknowledged a systemic lack of support hindered their efforts. Finally, Theme 4 describes the detrimental impacts on parent mental health, including feelings of helplessness, grief, guilt, and fear for the future. We show that it is imperative to more openly discuss child harmful behaviours in neuroaffirming ways, to develop responsive and appropriate parental and familial supports, which acknowledge the role of guilt and trauma in parental mental health.Lay Abstract Lots of research suggests that an Autistic child’s so-called “externalising behaviour” (like aggression or defiance) has a negative impact on that child’s parents’ mental health. But, so far, very few studies have talked directly to parents about why and how they experience distress because of their child’s externalising behaviours. In this study, we interviewed 39 Autistic and non-Autistic parents of Autistic children, to better understand their experiences of specific externalising behaviours. For this study, we were particularly interested in children’s “harmful behaviours,” which we defined as violence towards self, others, and/or property. We wanted parents to tell us in their own words what their experiences of such harmful behaviours were, how they understood these periods of crisis, what they did to respond to their children’s harmful behaviours, and what they felt about the behaviours. When we analysed parents’ responses, we came up with four main ideas or “themes.” Parents saw harmful behaviours as a combination of child self-harm, suicidal behaviour, and physical violence to their parents, siblings, and property (Theme 1). But parents did not necessarily blame their child, instead understanding that their child’s behaviour was likely an indication of intense or extreme distress or dysregulation (Theme 2). Parents wanted to keep their whole family safe, but they found they had limited options to do this, and they felt there was little or no support to help them during crises (Theme 3). Unfortunately, parents expressed lots of different emotions, like helplessness, grief, guilt, and fear, as a result of their child’s harmful behaviours (Theme 4). We need to understand better what is happening in families, how they are responding, and what support they need to cope so that we can help families who are experiencing these kinds of crises. This article addresses these questions. En ligne : https://dx.doi.org/10.1177/13623613261476379 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] The Impact of “Harmful Behaviours” on Parents of Autistic Children [texte imprimé] / Melanie HEYWORTH, Auteur ; Diana Weiting TAN, Auteur ; Elizabeth PELLICANO, Auteur . - p.2648-2661. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2648-2661 Mots-clés : autism  parents  harmful behaviours  externalising behaviours  trauma Index. décimale : PER Périodiques Résumé : In existing literature, an Autistic child’s “externalising behaviour” (e.g., aggression, defiance) is often associated with poor parental mental health outcomes. Yet few studies have considered the extent and nature of the impact of a child’s harmful behaviours (physical harm to self, others, and property) on parents qualitatively. Here, we examined how Autistic and non-autistic parents conceptualise their Autistic children’s harmful behaviours, and the impact of such behaviours on parents. We analysed 39 Autistic and non-autistic parent interviews using reflexive thematic analysis, from which we identified four themes. Theme 1 encompassed parents’ experiences of their children’s harmful behaviours. Theme 2 captured parents’ explanations for their children’s harmful behaviours, which they understood as indicating intense distress. In Theme 3, parents reflected on their responses to periods of crisis, during which they prioritised safety but acknowledged a systemic lack of support hindered their efforts. Finally, Theme 4 describes the detrimental impacts on parent mental health, including feelings of helplessness, grief, guilt, and fear for the future. We show that it is imperative to more openly discuss child harmful behaviours in neuroaffirming ways, to develop responsive and appropriate parental and familial supports, which acknowledge the role of guilt and trauma in parental mental health.Lay Abstract Lots of research suggests that an Autistic child’s so-called “externalising behaviour” (like aggression or defiance) has a negative impact on that child’s parents’ mental health. But, so far, very few studies have talked directly to parents about why and how they experience distress because of their child’s externalising behaviours. In this study, we interviewed 39 Autistic and non-Autistic parents of Autistic children, to better understand their experiences of specific externalising behaviours. For this study, we were particularly interested in children’s “harmful behaviours,” which we defined as violence towards self, others, and/or property. We wanted parents to tell us in their own words what their experiences of such harmful behaviours were, how they understood these periods of crisis, what they did to respond to their children’s harmful behaviours, and what they felt about the behaviours. When we analysed parents’ responses, we came up with four main ideas or “themes.” Parents saw harmful behaviours as a combination of child self-harm, suicidal behaviour, and physical violence to their parents, siblings, and property (Theme 1). But parents did not necessarily blame their child, instead understanding that their child’s behaviour was likely an indication of intense or extreme distress or dysregulation (Theme 2). Parents wanted to keep their whole family safe, but they found they had limited options to do this, and they felt there was little or no support to help them during crises (Theme 3). Unfortunately, parents expressed lots of different emotions, like helplessness, grief, guilt, and fear, as a result of their child’s harmful behaviours (Theme 4). We need to understand better what is happening in families, how they are responding, and what support they need to cope so that we can help families who are experiencing these kinds of crises. This article addresses these questions. En ligne : https://dx.doi.org/10.1177/13623613261476379 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

“There’s No Greater Feeling”: Empowerment and Achievement Through Neurodivergent Co-Design / Noah GLASER in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2662-2673 Titre : “There’s No Greater Feeling”: Empowerment and Achievement Through Neurodivergent Co-Design Type de document : texte imprimé Auteurs : Noah GLASER, Auteur ; Nigel NEWBUTT, Auteur Article en page(s) : p.2662-2673 Langues : Anglais (eng) Mots-clés : neurodiversity  co-design  extended reality  virtual reality  grounded theory Index. décimale : PER Périodiques Résumé : Extended reality (XR) technologies, including virtual reality (VR), have long been investigated as tools to support autistic and other neurodivergent individuals, yet much of this work has prioritized researcher-defined outcomes over the lived experiences of neurodivergent users. Participatory and co-design approaches offer a means to address this gap, but limited research documents how neurodivergent adults experience authentic involvement in XR development. This study examines the experiences of neurodivergent co-designers engaged in the collaborative creation of uSucceed, a VR cybersecurity learning environment. Five neurodivergent adults employed as paid members of a university-based development lab participated in semi-structured interviews focused on expectations, learning, design responsibilities, collaboration, and perceived impact. Using a grounded theory approach, analysis involved iterative coding, constant comparison, and axial mapping of relationships among design practices, experiences, and outcomes. Co-designers reported substantial growth in technical skills such as Unity development, C# scripting, debugging, and animation, alongside gains in communication, persistence, and reflective problem-solving. Structured learning supports and authentic production-level responsibilities fostered confidence, ownership, and a sense of value within a supportive, inclusive environment. These findings illustrate how intentionally structured, production-oriented XR co-design can support both technical skill development and meaningful participation for neurodivergent adults.Lay Abstract This study explores what it is like for neurodivergent adults to take part in designing virtual reality (VR) learning technologies, not just as research subjects, but as paid members of a development team. While VR and similar technologies have often been created to support autistic and other neurodivergent people, these tools are usually designed based on what researchers think users need, rather than on the experiences and priorities of neurodivergent individuals themselves. This project focuses on a different approach by examining how neurodivergent adults experienced collaborating on the development of uSucceed, a VR learning environment that teaches cybersecurity skills. Five neurodivergent adults worked in a university-based lab as co-designers and developers on the project. They participated in interviews where they shared their expectations, what they learned, how they contributed to the design process, how they worked with others, and how the experience affected them personally and professionally. The researchers carefully analyzed these interviews to understand common themes and patterns in their experiences. Participants described learning a wide range of technical skills, such as building VR environments, writing and fixing code, creating animations, and working with professional development tools. They also reported growth in broader skills, including communication, problem-solving, persistence, and confidence. Importantly, the team structure included clear guidance, regular check-ins, collaborative problem-solving, and supportive feedback, which helped participants stay engaged and work through challenges without becoming overwhelmed. Having real responsibilities on a production-level project made participants feel valued and proud of their contributions. En ligne : https://dx.doi.org/10.1177/13623613261478883 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] “There’s No Greater Feeling”: Empowerment and Achievement Through Neurodivergent Co-Design [texte imprimé] / Noah GLASER, Auteur ; Nigel NEWBUTT, Auteur . - p.2662-2673. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2662-2673 Mots-clés : neurodiversity  co-design  extended reality  virtual reality  grounded theory Index. décimale : PER Périodiques Résumé : Extended reality (XR) technologies, including virtual reality (VR), have long been investigated as tools to support autistic and other neurodivergent individuals, yet much of this work has prioritized researcher-defined outcomes over the lived experiences of neurodivergent users. Participatory and co-design approaches offer a means to address this gap, but limited research documents how neurodivergent adults experience authentic involvement in XR development. This study examines the experiences of neurodivergent co-designers engaged in the collaborative creation of uSucceed, a VR cybersecurity learning environment. Five neurodivergent adults employed as paid members of a university-based development lab participated in semi-structured interviews focused on expectations, learning, design responsibilities, collaboration, and perceived impact. Using a grounded theory approach, analysis involved iterative coding, constant comparison, and axial mapping of relationships among design practices, experiences, and outcomes. Co-designers reported substantial growth in technical skills such as Unity development, C# scripting, debugging, and animation, alongside gains in communication, persistence, and reflective problem-solving. Structured learning supports and authentic production-level responsibilities fostered confidence, ownership, and a sense of value within a supportive, inclusive environment. These findings illustrate how intentionally structured, production-oriented XR co-design can support both technical skill development and meaningful participation for neurodivergent adults.Lay Abstract This study explores what it is like for neurodivergent adults to take part in designing virtual reality (VR) learning technologies, not just as research subjects, but as paid members of a development team. While VR and similar technologies have often been created to support autistic and other neurodivergent people, these tools are usually designed based on what researchers think users need, rather than on the experiences and priorities of neurodivergent individuals themselves. This project focuses on a different approach by examining how neurodivergent adults experienced collaborating on the development of uSucceed, a VR learning environment that teaches cybersecurity skills. Five neurodivergent adults worked in a university-based lab as co-designers and developers on the project. They participated in interviews where they shared their expectations, what they learned, how they contributed to the design process, how they worked with others, and how the experience affected them personally and professionally. The researchers carefully analyzed these interviews to understand common themes and patterns in their experiences. Participants described learning a wide range of technical skills, such as building VR environments, writing and fixing code, creating animations, and working with professional development tools. They also reported growth in broader skills, including communication, problem-solving, persistence, and confidence. Importantly, the team structure included clear guidance, regular check-ins, collaborative problem-solving, and supportive feedback, which helped participants stay engaged and work through challenges without becoming overwhelmed. Having real responsibilities on a production-level project made participants feel valued and proud of their contributions. En ligne : https://dx.doi.org/10.1177/13623613261478883 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Challenges in Independent Living for Middle-Aged Autistic Adults in China: A Qualitative Study / Xi WANG in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2674-2690 Titre : Challenges in Independent Living for Middle-Aged Autistic Adults in China: A Qualitative Study Type de document : texte imprimé Auteurs : Xi WANG, Auteur ; Lihua ZHOU, Auteur Article en page(s) : p.2674-2690 Langues : Anglais (eng) Mots-clés : independent living  care sustainability  older adults  middle-aged adults  healthy aging  care disruption  family caregivers  charitable trusts  China Index. décimale : PER Périodiques Résumé : As the first cohort of formally diagnosed autistic individuals in China enters later life, the disruption of premature old-age care among middle-aged autistic adults—while they strive for independent living in old age—has emerged as an urgent public health issue. This study employed an exploratory qualitative design. Data collection methods included 34 semi-structured interviews and participant observation. Analysis revealed that premature care disruption unfolds through three sequential stages. First, while families still provided care, three resource deficits undermined independent aging for middle-aged autistic adults: lack of labor insurance, depleted household savings, and reduced care support in single-parent structures. Second, when family care capacity ruptured, reliance on institutional care was accompanied by multiple systemic limitations, including age-based exclusion and services that eroded rather than supported independent living. Third, families explored charitable trusts as an emerging strategy, yet these remained accessible primarily to middle-income households and left critical gaps in legal protection, asset management, and long-term social support. Middle-aged autistic adults in China experience a structural mismatch between their chronological midlife status and advanced-aged care needs, resulting in the premature breakdown of conditions for independent living. These findings offer critical implications for advancing the goal of healthy aging among autistic populations.Lay Abstract As the first cohort of formally diagnosed autistic individuals in China reaches middle and older age, many are facing a serious problem. They need care typically associated with old age, even though they are only in their 40s and 50s. This study explored why this happens and what families can do about it. We found that care disruption unfolds in three phases over time. First, while families were still caring for their children at home, many struggled to build enough savings and support for the future. Most middle-aged autistic adults had no work insurance. Years of caregiving had drained family resources. Single-parent families faced extra strain. Second, when parents became too old or ill to continue caring, families faced a crisis. Care homes often refused to accept autistic adults over 55. Even when accepted, these facilities failed to support independent living. Staff sometimes delivered meals directly to residents rather than helping them learn to do things for themselves. Third, after parents could no longer provide care, some families explored charitable trusts. These arrangements can provide money after parents die, but they require families to have assets such as property or savings to place in trust. They do not solve problems such as loneliness, daily support, or safety from bullying. Our findings show that middle-aged autistic adults are aging prematurely because of gaps in the care system. We hope these results will help policymakers design better support for autistic adults as they grow older. En ligne : https://dx.doi.org/10.1177/13623613261478882 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Challenges in Independent Living for Middle-Aged Autistic Adults in China: A Qualitative Study [texte imprimé] / Xi WANG, Auteur ; Lihua ZHOU, Auteur . - p.2674-2690. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2674-2690 Mots-clés : independent living  care sustainability  older adults  middle-aged adults  healthy aging  care disruption  family caregivers  charitable trusts  China Index. décimale : PER Périodiques Résumé : As the first cohort of formally diagnosed autistic individuals in China enters later life, the disruption of premature old-age care among middle-aged autistic adults—while they strive for independent living in old age—has emerged as an urgent public health issue. This study employed an exploratory qualitative design. Data collection methods included 34 semi-structured interviews and participant observation. Analysis revealed that premature care disruption unfolds through three sequential stages. First, while families still provided care, three resource deficits undermined independent aging for middle-aged autistic adults: lack of labor insurance, depleted household savings, and reduced care support in single-parent structures. Second, when family care capacity ruptured, reliance on institutional care was accompanied by multiple systemic limitations, including age-based exclusion and services that eroded rather than supported independent living. Third, families explored charitable trusts as an emerging strategy, yet these remained accessible primarily to middle-income households and left critical gaps in legal protection, asset management, and long-term social support. Middle-aged autistic adults in China experience a structural mismatch between their chronological midlife status and advanced-aged care needs, resulting in the premature breakdown of conditions for independent living. These findings offer critical implications for advancing the goal of healthy aging among autistic populations.Lay Abstract As the first cohort of formally diagnosed autistic individuals in China reaches middle and older age, many are facing a serious problem. They need care typically associated with old age, even though they are only in their 40s and 50s. This study explored why this happens and what families can do about it. We found that care disruption unfolds in three phases over time. First, while families were still caring for their children at home, many struggled to build enough savings and support for the future. Most middle-aged autistic adults had no work insurance. Years of caregiving had drained family resources. Single-parent families faced extra strain. Second, when parents became too old or ill to continue caring, families faced a crisis. Care homes often refused to accept autistic adults over 55. Even when accepted, these facilities failed to support independent living. Staff sometimes delivered meals directly to residents rather than helping them learn to do things for themselves. Third, after parents could no longer provide care, some families explored charitable trusts. These arrangements can provide money after parents die, but they require families to have assets such as property or savings to place in trust. They do not solve problems such as loneliness, daily support, or safety from bullying. Our findings show that middle-aged autistic adults are aging prematurely because of gaps in the care system. We hope these results will help policymakers design better support for autistic adults as they grow older. En ligne : https://dx.doi.org/10.1177/13623613261478882 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Short Report: Divergent Sleep–Wake Regularity in U.S. Children With Autism Spectrum Disorder: Bedtime vs Wake-up Regularity / Chia-Shuan CHANG in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2691-2698 Titre : Short Report: Divergent Sleep–Wake Regularity in U.S. Children With Autism Spectrum Disorder: Bedtime vs Wake-up Regularity Type de document : texte imprimé Auteurs : Chia-Shuan CHANG, Auteur ; Chun-Ji LIN, Auteur Article en page(s) : p.2691-2698 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  sleep–wake regularity  sleep timing  children Index. décimale : PER Périodiques Résumé : Sleep–wake regularity is an emerging dimension of sleep health, yet its association with autism spectrum disorder (ASD) remains understudied in nationally representative samples, particularly across distinct components of sleep timing. Using parent-reported data from 11,462 U.S. children aged 5–17 years in the 2022 and 2024 National Health Interview Survey, this study examined associations between ASD diagnosis and irregular bedtime and wake-up timing, including differences by age group. Multivariable logistic regression models were adjusted for sociodemographic characteristics, family context, daytime fatigue, and mental health indicators, with survey weights applied to account for the complex sampling design. In pooled analyses, ASD was associated with lower odds of irregular bedtime (adjusted odds ratio [aOR] = 0.64, 95% CI: 0.43–0.95) but higher odds of irregular wake-up times (aOR = 1.60, 95% CI: 1.01–2.56). Age-stratified analyses showed that the association with irregular wake-up timing remained in children (aOR = 2.27, 95% CI: 1.14–4.51) but not in adolescents, while no association was observed for bedtime in either age group. As one of the first nationally representative analyses distinguishing bedtime and wake-up regularity in ASD, these findings suggest that associations differ by timing component and age group, with wake-up timing representing a potential intervention target.Lay abstract Many children do not go to bed or wake up at the same time every day, which can affect their health and daily functioning. Sleep problems are especially common among autistic children, but most research has focused on how long they sleep or how well they sleep, rather than whether their sleep schedules are consistent. In this study, we used national survey data from the United States to examine whether autistic children differ from other children in how regularly they go to bed and wake up. Using data from the 2022 and 2024 National Health Interview Survey, we analyzed parent-reported information from over 11,000 children aged 5 to 17 years. Our results showed that autistic children were more likely to have consistent bedtimes but also more likely to have irregular wake-up times than children who were not autistic. This pattern remained after accounting for factors such as daytime tiredness and emotional well-being. These findings suggest that sleep challenges in autistic children may vary by time of day and developmental stage. In particular, maintaining consistent wake-up times may be more difficult for younger autistic children. Focusing on wake-up timing may therefore be a useful target for supporting sleep health in this group. Further research is needed to understand the reasons behind these differences and to identify effective ways to promote consistent sleep schedules. En ligne : https://dx.doi.org/10.1177/13623613261477806 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Short Report: Divergent Sleep–Wake Regularity in U.S. Children With Autism Spectrum Disorder: Bedtime vs Wake-up Regularity [texte imprimé] / Chia-Shuan CHANG, Auteur ; Chun-Ji LIN, Auteur . - p.2691-2698. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2691-2698 Mots-clés : autism spectrum disorder  sleep–wake regularity  sleep timing  children Index. décimale : PER Périodiques Résumé : Sleep–wake regularity is an emerging dimension of sleep health, yet its association with autism spectrum disorder (ASD) remains understudied in nationally representative samples, particularly across distinct components of sleep timing. Using parent-reported data from 11,462 U.S. children aged 5–17 years in the 2022 and 2024 National Health Interview Survey, this study examined associations between ASD diagnosis and irregular bedtime and wake-up timing, including differences by age group. Multivariable logistic regression models were adjusted for sociodemographic characteristics, family context, daytime fatigue, and mental health indicators, with survey weights applied to account for the complex sampling design. In pooled analyses, ASD was associated with lower odds of irregular bedtime (adjusted odds ratio [aOR] = 0.64, 95% CI: 0.43–0.95) but higher odds of irregular wake-up times (aOR = 1.60, 95% CI: 1.01–2.56). Age-stratified analyses showed that the association with irregular wake-up timing remained in children (aOR = 2.27, 95% CI: 1.14–4.51) but not in adolescents, while no association was observed for bedtime in either age group. As one of the first nationally representative analyses distinguishing bedtime and wake-up regularity in ASD, these findings suggest that associations differ by timing component and age group, with wake-up timing representing a potential intervention target.Lay abstract Many children do not go to bed or wake up at the same time every day, which can affect their health and daily functioning. Sleep problems are especially common among autistic children, but most research has focused on how long they sleep or how well they sleep, rather than whether their sleep schedules are consistent. In this study, we used national survey data from the United States to examine whether autistic children differ from other children in how regularly they go to bed and wake up. Using data from the 2022 and 2024 National Health Interview Survey, we analyzed parent-reported information from over 11,000 children aged 5 to 17 years. Our results showed that autistic children were more likely to have consistent bedtimes but also more likely to have irregular wake-up times than children who were not autistic. This pattern remained after accounting for factors such as daytime tiredness and emotional well-being. These findings suggest that sleep challenges in autistic children may vary by time of day and developmental stage. In particular, maintaining consistent wake-up times may be more difficult for younger autistic children. Focusing on wake-up timing may therefore be a useful target for supporting sleep health in this group. Further research is needed to understand the reasons behind these differences and to identify effective ways to promote consistent sleep schedules. En ligne : https://dx.doi.org/10.1177/13623613261477806 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Embedding Child-Centred Information in Developmental Care Pathways for Autistic Children: A Response to Albin et al / Liping YANG in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2699-2700 Titre : Embedding Child-Centred Information in Developmental Care Pathways for Autistic Children: A Response to Albin et al Type de document : texte imprimé Auteurs : Liping YANG, Auteur Article en page(s) : p.2699-2700 Langues : Anglais (eng) Mots-clés : autism  clinical/diagnoses  adaptive behaviour Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613261470852 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Embedding Child-Centred Information in Developmental Care Pathways for Autistic Children: A Response to Albin et al [texte imprimé] / Liping YANG, Auteur . - p.2699-2700. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2699-2700 Mots-clés : autism  clinical/diagnoses  adaptive behaviour Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613261470852 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593