Dépouillements

Disentangling Autism and Vision Impairment: Challenges in Differential Diagnosis / Maria GRAMMATIKOU in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2167-2172 Titre : Disentangling Autism and Vision Impairment: Challenges in Differential Diagnosis Type de document : texte imprimé Auteurs : Maria GRAMMATIKOU, Auteur ; Aikaterini TAVOULARI, Auteur ; Catherine MANNING, Auteur Article en page(s) : p.2167-2172 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613261464680 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Disentangling Autism and Vision Impairment: Challenges in Differential Diagnosis [texte imprimé] / Maria GRAMMATIKOU, Auteur ; Aikaterini TAVOULARI, Auteur ; Catherine MANNING, Auteur . - p.2167-2172. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2167-2172 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613261464680 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Extent and Rigor of Cultural Adaptations in Social Communication Interventions for Autistic Children and Adolescents: A Systematic Review / Vipula RAJESH KUMAR in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2173-2190 Titre : Extent and Rigor of Cultural Adaptations in Social Communication Interventions for Autistic Children and Adolescents: A Systematic Review Type de document : texte imprimé Auteurs : Vipula RAJESH KUMAR, Auteur ; Aditi IYER, Auteur ; Theresa PHAM, Auteur ; Marie Y. SAVUNDRANAYAGAM, Auteur ; Sheila T. MOODIE, Auteur ; Janis ORAM, Auteur Article en page(s) : p.2173-2190 Langues : Anglais (eng) Mots-clés : cultural adaptations  autism spectrum disorder  social communication interventions  systematic review  quality appraisal  Cultural Adaptation Checklist Index. décimale : PER Périodiques Résumé : Social communication interventions to support autistic people are primarily developed and tested in Western countries with predominantly White, English-speaking participants. Although numerous frameworks have been developed to adapt these interventions for diverse ethnocultural groups, the quality of these adaptations is not well understood. This review used the Cultural Adaptation Checklist (CAC) to appraise the quality of cultural adaptations of social communication interventions for autistic children and adolescents. Searches across eight databases identified 16 studies involving 474 participants. Included studies reflected seven different culturally adapted interventions delivered across 12 countries in 11 languages. The methodological quality of the studies was assessed using QualSyst, and data were analyzed through narrative synthesis. All studies demonstrated at least adequate methodological quality, but only three reported using a specific framework to guide their cultural adaptations. The extent of adaptations varied, with fulfillment of CAC items across studies ranging from 44% to 91%. This review highlights the need for more comprehensively reported cultural adaptations to best support the global autistic community. The CAC offers a useful framework that researchers can use to facilitate this process. Future research should examine to what extent cultural adaptations are needed and which types of adaptations best support desired intervention outcomes.Lay Abstract Many programs have been designed in Western countries to support social communication skills such as understanding others, making friends, and building relationships in autistic people. Those who participate in these programs have mainly been English-speaking participants, so the suitability of these programs to other language, cultural, and ethnic backgrounds remains unknown. To make programs more culturally and linguistically relevant, researchers have adapted them in several ways. This study looked at how well programs for autistic children and adolescents have been adapted for various communities. Using the Cultural Adaptation Checklist (CAC), we examined 16 studies and found that the amount of adaptations varied widely. Only three studies mentioned using a framework that guided their adaptations. Our findings show that although all studies described some level of cultural adaptation, very few reported on ensuring stronger community involvement or making the programs more accessible for all. Using tools like the CAC can help researchers and clinicians make programs more inclusive and relevant for autistic individuals and their families worldwide. En ligne : https://dx.doi.org/10.1177/13623613261455374 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Extent and Rigor of Cultural Adaptations in Social Communication Interventions for Autistic Children and Adolescents: A Systematic Review [texte imprimé] / Vipula RAJESH KUMAR, Auteur ; Aditi IYER, Auteur ; Theresa PHAM, Auteur ; Marie Y. SAVUNDRANAYAGAM, Auteur ; Sheila T. MOODIE, Auteur ; Janis ORAM, Auteur . - p.2173-2190. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2173-2190 Mots-clés : cultural adaptations  autism spectrum disorder  social communication interventions  systematic review  quality appraisal  Cultural Adaptation Checklist Index. décimale : PER Périodiques Résumé : Social communication interventions to support autistic people are primarily developed and tested in Western countries with predominantly White, English-speaking participants. Although numerous frameworks have been developed to adapt these interventions for diverse ethnocultural groups, the quality of these adaptations is not well understood. This review used the Cultural Adaptation Checklist (CAC) to appraise the quality of cultural adaptations of social communication interventions for autistic children and adolescents. Searches across eight databases identified 16 studies involving 474 participants. Included studies reflected seven different culturally adapted interventions delivered across 12 countries in 11 languages. The methodological quality of the studies was assessed using QualSyst, and data were analyzed through narrative synthesis. All studies demonstrated at least adequate methodological quality, but only three reported using a specific framework to guide their cultural adaptations. The extent of adaptations varied, with fulfillment of CAC items across studies ranging from 44% to 91%. This review highlights the need for more comprehensively reported cultural adaptations to best support the global autistic community. The CAC offers a useful framework that researchers can use to facilitate this process. Future research should examine to what extent cultural adaptations are needed and which types of adaptations best support desired intervention outcomes.Lay Abstract Many programs have been designed in Western countries to support social communication skills such as understanding others, making friends, and building relationships in autistic people. Those who participate in these programs have mainly been English-speaking participants, so the suitability of these programs to other language, cultural, and ethnic backgrounds remains unknown. To make programs more culturally and linguistically relevant, researchers have adapted them in several ways. This study looked at how well programs for autistic children and adolescents have been adapted for various communities. Using the Cultural Adaptation Checklist (CAC), we examined 16 studies and found that the amount of adaptations varied widely. Only three studies mentioned using a framework that guided their adaptations. Our findings show that although all studies described some level of cultural adaptation, very few reported on ensuring stronger community involvement or making the programs more accessible for all. Using tools like the CAC can help researchers and clinicians make programs more inclusive and relevant for autistic individuals and their families worldwide. En ligne : https://dx.doi.org/10.1177/13623613261455374 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

A Systematic Review and Quality Appraisal of AI-Augmented Intervention Studies for Autistic Individuals / Yusuf AKEMOGLU in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2191-2207 Titre : A Systematic Review and Quality Appraisal of AI-Augmented Intervention Studies for Autistic Individuals Type de document : texte imprimé Auteurs : Yusuf AKEMOGLU, Auteur ; Emily Brooke ROBERTS, Auteur ; Jinjun XIONG, Auteur Article en page(s) : p.2191-2207 Langues : Anglais (eng) Mots-clés : artificial intelligence  autism  methodological rigor  human-centered AI  intervention Index. décimale : PER Périodiques Résumé : Artificial intelligence (AI) has been increasingly integrated into autism interventions to support personalization and scalability; however, the strength of empirical evidence supporting these approaches remains unclear. In this systematic review, we synthesized and critically appraised experimental studies evaluating AI-based interventions for autistic individuals with a specific focus on intervention outcomes and methodological rigor. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guidelines and a preregistered PROSPERO protocol, we searched databases and identified 13 eligible studies, including randomized controlled trials, quasi-experimental group designs, and single-case experimental designs. Reviewed studies targeted social engagement, communication, emotion recognition, empathy, adaptive participation, and symbolic play and predominantly employed human-in-the-loop models involving parents, educators, or clinicians. Methodological quality was evaluated using design-appropriate quality indicators and What Works Clearinghouse (WWC) standards. Although most studies reported positive short-term effects on participant-level outcomes, rigor varied considerably. Only two studies met WWC standards, five met standards with reservations, and six did not meet standards due to limitations related to experimental control, fidelity reporting, outcome measurement, or data adequacy. Overall, AI-based interventions show promise as tools to augment human-delivered autism interventions, but the current evidence base is preliminary. More rigorous research is needed to establish effectiveness and inform implementation in autism services.Lay Abstract Artificial intelligence, often called AI, is increasingly being used to support services for autistic children. AI tools can help adults such as parents, teachers, and therapists personalize instruction, track progress, and provide feedback during everyday activities. However, it is not yet clear how strong the research evidence is for AI-based interventions. In this review, we examined studies that tested AI-supported interventions designed to improve learning and behavior outcomes for autistic individuals. We carefully reviewed 13 studies and evaluated how well these studies were designed and conducted. The studies focused on areas such as social engagement, communication, emotion understanding, empathy, and participation in daily routines. Most interventions used AI to support, rather than replace, adult guidance. Although many studies reported positive short-term improvements, we found that many had important limitations in their research design. Only a small number of studies met strong standards for research quality. This means that more careful and well-designed studies are needed before AI-based interventions can be widely recommended. Overall, AI shows promise as a tool to support autism intervention, but stronger evidence is needed to understand when, how, and for whom these tools are most helpful. En ligne : https://dx.doi.org/10.1177/13623613261470855 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] A Systematic Review and Quality Appraisal of AI-Augmented Intervention Studies for Autistic Individuals [texte imprimé] / Yusuf AKEMOGLU, Auteur ; Emily Brooke ROBERTS, Auteur ; Jinjun XIONG, Auteur . - p.2191-2207. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2191-2207 Mots-clés : artificial intelligence  autism  methodological rigor  human-centered AI  intervention Index. décimale : PER Périodiques Résumé : Artificial intelligence (AI) has been increasingly integrated into autism interventions to support personalization and scalability; however, the strength of empirical evidence supporting these approaches remains unclear. In this systematic review, we synthesized and critically appraised experimental studies evaluating AI-based interventions for autistic individuals with a specific focus on intervention outcomes and methodological rigor. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guidelines and a preregistered PROSPERO protocol, we searched databases and identified 13 eligible studies, including randomized controlled trials, quasi-experimental group designs, and single-case experimental designs. Reviewed studies targeted social engagement, communication, emotion recognition, empathy, adaptive participation, and symbolic play and predominantly employed human-in-the-loop models involving parents, educators, or clinicians. Methodological quality was evaluated using design-appropriate quality indicators and What Works Clearinghouse (WWC) standards. Although most studies reported positive short-term effects on participant-level outcomes, rigor varied considerably. Only two studies met WWC standards, five met standards with reservations, and six did not meet standards due to limitations related to experimental control, fidelity reporting, outcome measurement, or data adequacy. Overall, AI-based interventions show promise as tools to augment human-delivered autism interventions, but the current evidence base is preliminary. More rigorous research is needed to establish effectiveness and inform implementation in autism services.Lay Abstract Artificial intelligence, often called AI, is increasingly being used to support services for autistic children. AI tools can help adults such as parents, teachers, and therapists personalize instruction, track progress, and provide feedback during everyday activities. However, it is not yet clear how strong the research evidence is for AI-based interventions. In this review, we examined studies that tested AI-supported interventions designed to improve learning and behavior outcomes for autistic individuals. We carefully reviewed 13 studies and evaluated how well these studies were designed and conducted. The studies focused on areas such as social engagement, communication, emotion understanding, empathy, and participation in daily routines. Most interventions used AI to support, rather than replace, adult guidance. Although many studies reported positive short-term improvements, we found that many had important limitations in their research design. Only a small number of studies met strong standards for research quality. This means that more careful and well-designed studies are needed before AI-based interventions can be widely recommended. Overall, AI shows promise as a tool to support autism intervention, but stronger evidence is needed to understand when, how, and for whom these tools are most helpful. En ligne : https://dx.doi.org/10.1177/13623613261470855 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Feasibility and Preliminary Efficacy of a Caregiver-Assisted Group-Based Naturalistic Developmental Behavioral Intervention Program for Autistic Preschoolers: A Pilot Randomized Controlled Trial / Guan-Jye SENG in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2208-2224 Titre : Feasibility and Preliminary Efficacy of a Caregiver-Assisted Group-Based Naturalistic Developmental Behavioral Intervention Program for Autistic Preschoolers: A Pilot Randomized Controlled Trial Type de document : texte imprimé Auteurs : Guan-Jye SENG, Auteur ; Ji-Yu LIN, Auteur ; Wei-Lieh HUANG, Auteur ; Hsin-Yu LAI, Auteur ; Wei-Chih KAO, Auteur ; Hao-Ling CHEN, Auteur ; Susan Shur-Fen GAU, Auteur Article en page(s) : p.2208-2224 Langues : Anglais (eng) Mots-clés : autism  naturalistic developmental behavioral intervention  group-based delivery  preliminary efficacy Index. décimale : PER Périodiques Résumé : Naturalistic Developmental Behavioral Interventions (NDBIs) effectively improve developmental, social, and adaptive outcomes in autistic children, with caregiver involvement further enhancing treatment effects. Although one-on-one NDBI programs are strongly supported by evidence, their reliance on high staff-to-child ratios and certified therapists limits scalability. Group-based NDBI models may represent a more feasible and cost-effective alternative, particularly when implemented with open-access fidelity frameworks and active caregiver participation. This pilot randomized controlled trial compared a caregiver-assisted, group-based NDBI program with a therapist-delivered one-on-one NDBI program in autistic children aged 2 to 5 years. Both interventions were administered twice weekly for 12 weeks, with fidelity monitored using the NDBI Fidelity (NDBI-Fi). Forty autistic children were enrolled, and 38 children were included in the final analyses. Both groups showed significant improvements over time in verbal development, social interaction, adaptive functioning, autistic symptoms, problem behaviors, and caregiver stress. A significant time-by-group interaction was observed for nonverbal development, with significant gains in the one-on-one NDBI group but not in the group-based condition. These preliminary findings suggest that a structured, caregiver-assisted group-based NDBI model that integrates caregivers’ assistance, maintains intervention fidelity, and reduces staffing demands is feasible and associated with changes over time, indicating its potential as a scalable intervention approach.Clinical trial registry: https://clinicaltrials.gov/study/NCT06221943Lay Abstract Early intervention can help young autistic children improve communication, learning, social skills, and daily functioning. One widely used approach, Naturalistic Developmental Behavioral Intervention (NDBI), teaches skills through play and everyday activities, while actively involving caregivers. However, traditional NDBI is typically delivered one-on-one by trained therapists, which can be costly and difficult for many families to access. This study evaluated a new, group-based NDBI program in which small groups of young children and their caregivers learned together with therapist guidance. Thirty-eight autistic children aged 2 to 5 years received two sessions per week over 12 weeks, with 19 receiving the group program and 19 receiving the therapist-delivered one-on-one intervention. Children in both groups showed meaningful improvements in language, social interaction, adaptive functioning, autistic symptoms, and behaviors. Caregivers in both groups also reported feeling less stressed. The group-based model was feasible and acceptable while supporting positive developmental changes. However, significant improvements in nonverbal development were observed only in the one-on-one intervention group. Overall, these findings suggest that caregiver-assisted group-based NDBI is a promising and more accessible early intervention option, especially in settings where individualized therapy is limited or difficult to obtain. En ligne : https://dx.doi.org/10.1177/13623613261462574 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Feasibility and Preliminary Efficacy of a Caregiver-Assisted Group-Based Naturalistic Developmental Behavioral Intervention Program for Autistic Preschoolers: A Pilot Randomized Controlled Trial [texte imprimé] / Guan-Jye SENG, Auteur ; Ji-Yu LIN, Auteur ; Wei-Lieh HUANG, Auteur ; Hsin-Yu LAI, Auteur ; Wei-Chih KAO, Auteur ; Hao-Ling CHEN, Auteur ; Susan Shur-Fen GAU, Auteur . - p.2208-2224. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2208-2224 Mots-clés : autism  naturalistic developmental behavioral intervention  group-based delivery  preliminary efficacy Index. décimale : PER Périodiques Résumé : Naturalistic Developmental Behavioral Interventions (NDBIs) effectively improve developmental, social, and adaptive outcomes in autistic children, with caregiver involvement further enhancing treatment effects. Although one-on-one NDBI programs are strongly supported by evidence, their reliance on high staff-to-child ratios and certified therapists limits scalability. Group-based NDBI models may represent a more feasible and cost-effective alternative, particularly when implemented with open-access fidelity frameworks and active caregiver participation. This pilot randomized controlled trial compared a caregiver-assisted, group-based NDBI program with a therapist-delivered one-on-one NDBI program in autistic children aged 2 to 5 years. Both interventions were administered twice weekly for 12 weeks, with fidelity monitored using the NDBI Fidelity (NDBI-Fi). Forty autistic children were enrolled, and 38 children were included in the final analyses. Both groups showed significant improvements over time in verbal development, social interaction, adaptive functioning, autistic symptoms, problem behaviors, and caregiver stress. A significant time-by-group interaction was observed for nonverbal development, with significant gains in the one-on-one NDBI group but not in the group-based condition. These preliminary findings suggest that a structured, caregiver-assisted group-based NDBI model that integrates caregivers’ assistance, maintains intervention fidelity, and reduces staffing demands is feasible and associated with changes over time, indicating its potential as a scalable intervention approach.Clinical trial registry: https://clinicaltrials.gov/study/NCT06221943Lay Abstract Early intervention can help young autistic children improve communication, learning, social skills, and daily functioning. One widely used approach, Naturalistic Developmental Behavioral Intervention (NDBI), teaches skills through play and everyday activities, while actively involving caregivers. However, traditional NDBI is typically delivered one-on-one by trained therapists, which can be costly and difficult for many families to access. This study evaluated a new, group-based NDBI program in which small groups of young children and their caregivers learned together with therapist guidance. Thirty-eight autistic children aged 2 to 5 years received two sessions per week over 12 weeks, with 19 receiving the group program and 19 receiving the therapist-delivered one-on-one intervention. Children in both groups showed meaningful improvements in language, social interaction, adaptive functioning, autistic symptoms, and behaviors. Caregivers in both groups also reported feeling less stressed. The group-based model was feasible and acceptable while supporting positive developmental changes. However, significant improvements in nonverbal development were observed only in the one-on-one intervention group. Overall, these findings suggest that caregiver-assisted group-based NDBI is a promising and more accessible early intervention option, especially in settings where individualized therapy is limited or difficult to obtain. En ligne : https://dx.doi.org/10.1177/13623613261462574 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Olfactory Function in Autism Spectrum Disorder Across the Lifespan: A Systematic Review and Meta-Analysis / Isabelle CULLEN in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2225-2247 Titre : Olfactory Function in Autism Spectrum Disorder Across the Lifespan: A Systematic Review and Meta-Analysis Type de document : texte imprimé Auteurs : Isabelle CULLEN, Auteur ; Elisa DAL BÒ, Auteur ; Peace MADDOX, Auteur ; Thomas SOPHOCLES, Auteur ; Kristina MCSHEA, Auteur ; Edward S. BRODKIN, Auteur ; Valentina PARMA, Auteur Article en page(s) : p.2225-2247 Langues : Anglais (eng) Mots-clés : autism  olfaction  development  meta-analysis Index. décimale : PER Périodiques Résumé : Altered sensory processing is recognized as a core diagnostic feature of autism spectrum disorder (ASD). Olfactory perception in autism remains poorly characterized, despite its important role in safety, nutrition, and socialization. We conducted a preregistered systematic review and meta-analysis to quantify differences and identify moderators in olfactory function between autistic and non-autistic individuals. Following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines, we searched Web of Science, SCOPUS, PubMed, EMBASE, and CINAHL databases and identified 46 eligible studies with 87 effect sizes from 1,580 autistic and 7,698 non-autistic individuals. Moderator analyses examined olfactory assessment type, olfactory function tested, age, sex, and intelligence quotient (IQ). Autistic individuals showed significantly poorer olfactory performance than non-autistic (g = −0.64), with reduced performance in psychophysical testing (g = −0.58) and informant reports (g = −1.31), but not in self-report or odor rating measures. In autism, significant differences were observed for psychophysically measured odor identification (g = −0.66), threshold (g = −0.47), and taste-smell measures from informant reports (g = −1.33). Autistic children exhibited moderate deficits (g = −0.88; odor identification: g = −0.80; threshold: g = −0.65). Olfactory alterations in autism appear most pronounced in childhood and vary by assessment method and olfactory function measured. Our results highlight the need for age-appropriate standardized measures to accurately evaluate sensory function in autism across the lifespan.Lay Abstract Many autistic individuals experience sensory sensitivities that can make everyday activities more difficult. While researchers have studied how autism affects senses like sight and sound, the sense of smell has received much less attention, even though it plays important roles in helping us detect danger, judge whether food is safe to eat, and connect with others socially. Past studies have suggested that autistic individuals may experience differences in their sense of smell, including how well they can detect, distinguish, or identify odors by name. However, the results of smell studies in autism have been mixed because studies often use different testing methods, have small numbers of participants, and do not always account for demographic factors (e.g., age or sex). In this study, we reviewed the published research literature to better understand how the sense of smell differs based on: (1) whether someone is autistic or not, (2) the type of smell test used, (3) age (children vs. adults), and (4) the specific smell ability being measured. Overall, we found that autistic individuals tend to have poorer smell abilities than non-autistic individuals. These differences between autistic and non-autistic individuals were most noticeable when smell was measured by caregiver reports or standardized laboratory tests, but not when people rated their own sense of smell or described how odors smelled to them. These differences in smell were mainly seen in autistic children. The strongest differences were found in odor identification, sensitivity to smells, and caregiver-reported taste and smell experiences. En ligne : https://dx.doi.org/10.1177/13623613261462975 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Olfactory Function in Autism Spectrum Disorder Across the Lifespan: A Systematic Review and Meta-Analysis [texte imprimé] / Isabelle CULLEN, Auteur ; Elisa DAL BÒ, Auteur ; Peace MADDOX, Auteur ; Thomas SOPHOCLES, Auteur ; Kristina MCSHEA, Auteur ; Edward S. BRODKIN, Auteur ; Valentina PARMA, Auteur . - p.2225-2247. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2225-2247 Mots-clés : autism  olfaction  development  meta-analysis Index. décimale : PER Périodiques Résumé : Altered sensory processing is recognized as a core diagnostic feature of autism spectrum disorder (ASD). Olfactory perception in autism remains poorly characterized, despite its important role in safety, nutrition, and socialization. We conducted a preregistered systematic review and meta-analysis to quantify differences and identify moderators in olfactory function between autistic and non-autistic individuals. Following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines, we searched Web of Science, SCOPUS, PubMed, EMBASE, and CINAHL databases and identified 46 eligible studies with 87 effect sizes from 1,580 autistic and 7,698 non-autistic individuals. Moderator analyses examined olfactory assessment type, olfactory function tested, age, sex, and intelligence quotient (IQ). Autistic individuals showed significantly poorer olfactory performance than non-autistic (g = −0.64), with reduced performance in psychophysical testing (g = −0.58) and informant reports (g = −1.31), but not in self-report or odor rating measures. In autism, significant differences were observed for psychophysically measured odor identification (g = −0.66), threshold (g = −0.47), and taste-smell measures from informant reports (g = −1.33). Autistic children exhibited moderate deficits (g = −0.88; odor identification: g = −0.80; threshold: g = −0.65). Olfactory alterations in autism appear most pronounced in childhood and vary by assessment method and olfactory function measured. Our results highlight the need for age-appropriate standardized measures to accurately evaluate sensory function in autism across the lifespan.Lay Abstract Many autistic individuals experience sensory sensitivities that can make everyday activities more difficult. While researchers have studied how autism affects senses like sight and sound, the sense of smell has received much less attention, even though it plays important roles in helping us detect danger, judge whether food is safe to eat, and connect with others socially. Past studies have suggested that autistic individuals may experience differences in their sense of smell, including how well they can detect, distinguish, or identify odors by name. However, the results of smell studies in autism have been mixed because studies often use different testing methods, have small numbers of participants, and do not always account for demographic factors (e.g., age or sex). In this study, we reviewed the published research literature to better understand how the sense of smell differs based on: (1) whether someone is autistic or not, (2) the type of smell test used, (3) age (children vs. adults), and (4) the specific smell ability being measured. Overall, we found that autistic individuals tend to have poorer smell abilities than non-autistic individuals. These differences between autistic and non-autistic individuals were most noticeable when smell was measured by caregiver reports or standardized laboratory tests, but not when people rated their own sense of smell or described how odors smelled to them. These differences in smell were mainly seen in autistic children. The strongest differences were found in odor identification, sensitivity to smells, and caregiver-reported taste and smell experiences. En ligne : https://dx.doi.org/10.1177/13623613261462975 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Preliminary Reliability and Validity of the M-CHAT-S, a New Autism Screening Tool for School-Aged Children / Ashley DE MARCHENA in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2248-2259 Titre : Preliminary Reliability and Validity of the M-CHAT-S, a New Autism Screening Tool for School-Aged Children Type de document : texte imprimé Auteurs : Ashley DE MARCHENA, Auteur ; Andrea T. WIECKOWSKI, Auteur ; Alexia F. DICKERSON, Auteur ; Hunter S. CHENG, Auteur ; Georgina PEREZ LIZ, Auteur ; Ashley DUBIN, Auteur ; Giacomo VIVANTI, Auteur ; Marianne BARTON, Auteur ; Deborah FEIN, Auteur ; Diana L. ROBINS, Auteur Article en page(s) : p.2248-2259 Langues : Anglais (eng) Mots-clés : autism  screening  early detection  psychometrics Index. décimale : PER Périodiques Résumé : Identifying autism early is critical for ensuring timely access to appropriate educational and clinical supports. Current autism screening practices primarily focus on toddlers; universal practices for identifying the substantial portion of autistic children who arrive at school age without a diagnosis are lacking. This study evaluates the preliminary reliability and validity of the Modified Checklist for Autism in Toddlers–School Age version (M-CHAT-S), a novel screener designed for early school-age children, with separate versions for verbally fluent and minimally verbal children. A total of 165 caregivers and 107 educators completed the M-CHAT-S, along with the Social Responsiveness Scale, Second Edition (SRS-2), to test convergent validity, and the Child Behavior Checklist (CBCL), to test discriminant validity. Findings demonstrate strong internal consistency across versions (Cronbach’s α = .79–.92) and robust construct validity. Children with preexisting autism diagnoses scored higher on the M-CHAT-S than nonautistic children. Both test–retest reliability and interrater reliability were in the moderate range. Despite these limitations, the M-CHAT-S demonstrates promise as a screening tool that could facilitate earlier identification of autistic children in school settings. Future research will involve a partnership with school districts to support school-based validation and implementation.Lay Abstract Children with disabilities have a right to a free and appropriate public education in the United States. Children who are not identified by the time of school entry are likely to miss out on appropriate services and supports to which they would otherwise be legally entitled. Many studies show that a large portion of individuals who are ultimately diagnosed with autism are not identified until by the time they start school.Screening tools can help identify children who may be on the autism spectrum. Universal autism screening is currently recommended for toddlers, but not school-age children. To address this gap, we developed the Modified Checklist for Autism in Toddlers-School Age version (M-CHAT-S) for children in early elementary school. This study tested the consistency and accuracy of the M-CHAT-S for both verbally fluent and minimally verbal children.We asked 165 caregivers and 107 educators to complete the M-CHAT-S and compared their responses to other well-established measures of autism traits and behavior. Overall, we found that the M-CHAT-S had good reliability, meaning that the items in the measure were consistent with each other. Children with a known autism diagnosis scored higher on the M-CHAT-S than non-autistic children. M-CHAT-S scores were more strongly related to another autism screening tool (the SRS-2) than to a survey of general behavior (the CBCL). However, test-retest reliability (whether the same rater’s score stayed consistent over time) and interrater reliability (whether two different raters agreed on scores) were lower than expected.These results suggest that the M-CHAT-S may be a useful tool for identifying autistic children in early school years. Future research will involve partnering with school districts to be able to reach as many children as possible, including autistic children who have not yet been identified. If validated further, this tool could help schools and families recognize children who need autistic support, leading to earlier access to services. En ligne : https://dx.doi.org/10.1177/13623613261464200 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Preliminary Reliability and Validity of the M-CHAT-S, a New Autism Screening Tool for School-Aged Children [texte imprimé] / Ashley DE MARCHENA, Auteur ; Andrea T. WIECKOWSKI, Auteur ; Alexia F. DICKERSON, Auteur ; Hunter S. CHENG, Auteur ; Georgina PEREZ LIZ, Auteur ; Ashley DUBIN, Auteur ; Giacomo VIVANTI, Auteur ; Marianne BARTON, Auteur ; Deborah FEIN, Auteur ; Diana L. ROBINS, Auteur . - p.2248-2259. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2248-2259 Mots-clés : autism  screening  early detection  psychometrics Index. décimale : PER Périodiques Résumé : Identifying autism early is critical for ensuring timely access to appropriate educational and clinical supports. Current autism screening practices primarily focus on toddlers; universal practices for identifying the substantial portion of autistic children who arrive at school age without a diagnosis are lacking. This study evaluates the preliminary reliability and validity of the Modified Checklist for Autism in Toddlers–School Age version (M-CHAT-S), a novel screener designed for early school-age children, with separate versions for verbally fluent and minimally verbal children. A total of 165 caregivers and 107 educators completed the M-CHAT-S, along with the Social Responsiveness Scale, Second Edition (SRS-2), to test convergent validity, and the Child Behavior Checklist (CBCL), to test discriminant validity. Findings demonstrate strong internal consistency across versions (Cronbach’s α = .79–.92) and robust construct validity. Children with preexisting autism diagnoses scored higher on the M-CHAT-S than nonautistic children. Both test–retest reliability and interrater reliability were in the moderate range. Despite these limitations, the M-CHAT-S demonstrates promise as a screening tool that could facilitate earlier identification of autistic children in school settings. Future research will involve a partnership with school districts to support school-based validation and implementation.Lay Abstract Children with disabilities have a right to a free and appropriate public education in the United States. Children who are not identified by the time of school entry are likely to miss out on appropriate services and supports to which they would otherwise be legally entitled. Many studies show that a large portion of individuals who are ultimately diagnosed with autism are not identified until by the time they start school.Screening tools can help identify children who may be on the autism spectrum. Universal autism screening is currently recommended for toddlers, but not school-age children. To address this gap, we developed the Modified Checklist for Autism in Toddlers-School Age version (M-CHAT-S) for children in early elementary school. This study tested the consistency and accuracy of the M-CHAT-S for both verbally fluent and minimally verbal children.We asked 165 caregivers and 107 educators to complete the M-CHAT-S and compared their responses to other well-established measures of autism traits and behavior. Overall, we found that the M-CHAT-S had good reliability, meaning that the items in the measure were consistent with each other. Children with a known autism diagnosis scored higher on the M-CHAT-S than non-autistic children. M-CHAT-S scores were more strongly related to another autism screening tool (the SRS-2) than to a survey of general behavior (the CBCL). However, test-retest reliability (whether the same rater’s score stayed consistent over time) and interrater reliability (whether two different raters agreed on scores) were lower than expected.These results suggest that the M-CHAT-S may be a useful tool for identifying autistic children in early school years. Future research will involve partnering with school districts to be able to reach as many children as possible, including autistic children who have not yet been identified. If validated further, this tool could help schools and families recognize children who need autistic support, leading to earlier access to services. En ligne : https://dx.doi.org/10.1177/13623613261464200 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

“There’s No Pretense Needed”: Autistic Perspectives on Autistic Friendships / Erinn H. FINKE in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2260-2271 Titre : “There’s No Pretense Needed”: Autistic Perspectives on Autistic Friendships Type de document : texte imprimé Auteurs : Erinn H. FINKE, Auteur ; Danny H. DUNN, Auteur Article en page(s) : p.2260-2271 Langues : Anglais (eng) Mots-clés : friendship  qualitative research  autism  neurodiversity Index. décimale : PER Périodiques Résumé : Assumptions about autistic sociality have shaped dominant understandings of friendship, often positioning autistic relationships as fragile, shallow, or inherently lacking. These framings stand in contrast to autistic people’s own accounts of friendship as meaningful, sustaining, and deeply valued. This qualitative study explored autistic perspectives on friendship through joint, semistructured interviews with 11 friendship dyads (22 participants), including 20 autistic young adults and their self-identified friends (autistic or nonautistic). Dyadic interviews supported the coconstruction of relational meaning, and data were analyzed using inductive thematic analysis informed by neurodiversity-affirming and double empathy frameworks. Participants described friendships as mutual, chosen, and grounded in acceptance, authenticity, and flexible reciprocity rather than neurotypical social expectations. Friendship quality was defined by depth of understanding and felt connection rather than frequency of interaction or proximity. Across themes, acceptance and authenticity supported unmasking, mutual understanding, adaptive reciprocity, and sustained connection over time. These findings challenge deficit-based models of autistic sociality and highlight autistic friendship as a sophisticated form of relational connection grounded in autistic strengths and values.Lay Abstract Many stereotypes suggest that autistic people struggle to form meaningful friendships. However, autistic people often describe their friendships as deeply important and rewarding. In this study, autistic young adults and their friends participated in interviews about what friendship means to them and how friendships grow and last over time. Participants described friendship as being built on acceptance, honesty, shared understanding, and flexibility rather than pressure to act “normal.” Friends supported each other emotionally, adapted to each other’s needs, and maintained connection in ways that worked for them. Participants also emphasized the importance of being able to unmask and feel authentic in friendship. These findings challenge deficit-based views of autistic social relationships and highlight the strengths, care, and mutual support present in autistic friendships. En ligne : https://dx.doi.org/10.1177/13623613261464197 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] “There’s No Pretense Needed”: Autistic Perspectives on Autistic Friendships [texte imprimé] / Erinn H. FINKE, Auteur ; Danny H. DUNN, Auteur . - p.2260-2271. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2260-2271 Mots-clés : friendship  qualitative research  autism  neurodiversity Index. décimale : PER Périodiques Résumé : Assumptions about autistic sociality have shaped dominant understandings of friendship, often positioning autistic relationships as fragile, shallow, or inherently lacking. These framings stand in contrast to autistic people’s own accounts of friendship as meaningful, sustaining, and deeply valued. This qualitative study explored autistic perspectives on friendship through joint, semistructured interviews with 11 friendship dyads (22 participants), including 20 autistic young adults and their self-identified friends (autistic or nonautistic). Dyadic interviews supported the coconstruction of relational meaning, and data were analyzed using inductive thematic analysis informed by neurodiversity-affirming and double empathy frameworks. Participants described friendships as mutual, chosen, and grounded in acceptance, authenticity, and flexible reciprocity rather than neurotypical social expectations. Friendship quality was defined by depth of understanding and felt connection rather than frequency of interaction or proximity. Across themes, acceptance and authenticity supported unmasking, mutual understanding, adaptive reciprocity, and sustained connection over time. These findings challenge deficit-based models of autistic sociality and highlight autistic friendship as a sophisticated form of relational connection grounded in autistic strengths and values.Lay Abstract Many stereotypes suggest that autistic people struggle to form meaningful friendships. However, autistic people often describe their friendships as deeply important and rewarding. In this study, autistic young adults and their friends participated in interviews about what friendship means to them and how friendships grow and last over time. Participants described friendship as being built on acceptance, honesty, shared understanding, and flexibility rather than pressure to act “normal.” Friends supported each other emotionally, adapted to each other’s needs, and maintained connection in ways that worked for them. Participants also emphasized the importance of being able to unmask and feel authentic in friendship. These findings challenge deficit-based views of autistic social relationships and highlight the strengths, care, and mutual support present in autistic friendships. En ligne : https://dx.doi.org/10.1177/13623613261464197 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Examining the Roles of Retrieval Practice and Post-Retrieval Feedback in Learning Among Autistic Adults / Brianna E. CAIRNEY in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2272-2287 Titre : Examining the Roles of Retrieval Practice and Post-Retrieval Feedback in Learning Among Autistic Adults Type de document : texte imprimé Auteurs : Brianna E. CAIRNEY, Auteur ; Eileen HAEBIG, Auteur ; Heather D. LUCAS, Auteur Article en page(s) : p.2272-2287 Langues : Anglais (eng) Mots-clés : autism  autistic adults  retrieval practice  testing effect  feedback  learning  associative memory Index. décimale : PER Périodiques Résumé : Retrieval practice enhances learning and is most effective when feedback is provided. Despite robust evidence that retrieval practice and post-retrieval feedback benefit numerous clinical populations, these techniques have not been studied in autism. In two experiments, we measured retrieval practice and post-retrieval feedback effects on associative memory in autistic and non-autistic adults residing in the United States. Participants attempted to memorize semantically unrelated word pairs, which were then reviewed during a practice phase consisting of retrieval practice with and without feedback. In Experiment 1, word pairs were presented to participants (40 autistic; 40 non-autistic) auditorily. In Experiment 2, stimuli were presented visually and restudy trials were added to the practice phase. Additionally, feedback for retrieval practice trials was manipulated between-subjects (80 participants per group) and a four-alternative recognition test was used in the practice phase. In both experiments, the testing phase consisted of cued recall. Both experiments yielded benefits of feedback following initial retrieval practice across groups. In addition, Experiment 2 demonstrated that both groups benefited from retrieval practice compared to restudy, even without feedback. Our results suggest that the well-documented effects of retrieval practice, particularly in concert with post-retrieval feedback, extend to support learning among autistic as well as non-autistic individuals.Lay Abstract Every autistic person has their own unique sensory, perceptual, and social experiences that impact learning in different ways. Although many autistic learners have average or above-average IQ, individuals with a diagnosis of autism have an increased likelihood of co-occurring learning disabilities and episodic memory difficulties. These memory-related challenges make it especially important to identify strategies that can support learning in autistic populations. Retrieval practice may be one such strategy, which involves testing oneself on previously learned information. Notably, retrieval practice supports learning among many clinical populations who experience memory and learning difficulties, yet it has not been investigated among autistic learners. This study measured the effects of retrieval practice and post-retrieval feedback among autistic and non-autistic adults (40 per group in Experiment 1; 80 per group in Experiment 2) residing in the United States. The task was divided into three sections. First, participants completed a “learning” block where they attempted to memorize unrelated word pairings (e.g., typing flower). Second was a “practice” block, in which they reviewed the recently learned word pairs. Practice trials consisted of retrieval practice with feedback, retrieval practice without feedback, and restudy. In restudy trials, participants reviewed the full word pair (e.g., typing flower) and selected the second word (e.g., flower) among a list of three similar words (e.g., blossom, bud, bloom). In retrieval practice trials, participants were given the first word (e.g., typing) and attempted to remember its corresponding word (e.g., flower). In feedback trials, after participants made their response, they were presented with the full word pair (e.g., typing flower) regardless of their accuracy. In the third and final “testing” block, participants’ memory for word pairs was tested once more. This allowed us to compare the effect of retrieval practice with feedback, retrieval practice without feedback, and restudying on final test performance. In addition, we measured the generalizability of the testing effect in different learning contexts (listening to word pairs in Experiment 1; reading word pairs in Experiment 2) and retrieval practice formats (cued recall in Experiment 1; multiple choice in Experiment 2). In both experiments, the benefits of feedback following retrieval practice were evident, and retrieval practice was a more effective learning strategy than restudying word pairs. These outcomes wer present in autistic and non-autistic learners alike. This study is the first to demonstrate that retrieval practice with feedback promotes learning in autistic adults. It is well-documented that autistic individuals face suboptimal educational and vocational outcomes compared to their non-autistic peers; thus, strategies that support learning are important to study. These findings contribute to a large body of existing research affirming retrieval practice as a flexible learning strategy that is most effective when accompanied by feedback and may have the potential to improve outcomes for autistic learners. En ligne : https://dx.doi.org/10.1177/13623613261464659 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Examining the Roles of Retrieval Practice and Post-Retrieval Feedback in Learning Among Autistic Adults [texte imprimé] / Brianna E. CAIRNEY, Auteur ; Eileen HAEBIG, Auteur ; Heather D. LUCAS, Auteur . - p.2272-2287. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2272-2287 Mots-clés : autism  autistic adults  retrieval practice  testing effect  feedback  learning  associative memory Index. décimale : PER Périodiques Résumé : Retrieval practice enhances learning and is most effective when feedback is provided. Despite robust evidence that retrieval practice and post-retrieval feedback benefit numerous clinical populations, these techniques have not been studied in autism. In two experiments, we measured retrieval practice and post-retrieval feedback effects on associative memory in autistic and non-autistic adults residing in the United States. Participants attempted to memorize semantically unrelated word pairs, which were then reviewed during a practice phase consisting of retrieval practice with and without feedback. In Experiment 1, word pairs were presented to participants (40 autistic; 40 non-autistic) auditorily. In Experiment 2, stimuli were presented visually and restudy trials were added to the practice phase. Additionally, feedback for retrieval practice trials was manipulated between-subjects (80 participants per group) and a four-alternative recognition test was used in the practice phase. In both experiments, the testing phase consisted of cued recall. Both experiments yielded benefits of feedback following initial retrieval practice across groups. In addition, Experiment 2 demonstrated that both groups benefited from retrieval practice compared to restudy, even without feedback. Our results suggest that the well-documented effects of retrieval practice, particularly in concert with post-retrieval feedback, extend to support learning among autistic as well as non-autistic individuals.Lay Abstract Every autistic person has their own unique sensory, perceptual, and social experiences that impact learning in different ways. Although many autistic learners have average or above-average IQ, individuals with a diagnosis of autism have an increased likelihood of co-occurring learning disabilities and episodic memory difficulties. These memory-related challenges make it especially important to identify strategies that can support learning in autistic populations. Retrieval practice may be one such strategy, which involves testing oneself on previously learned information. Notably, retrieval practice supports learning among many clinical populations who experience memory and learning difficulties, yet it has not been investigated among autistic learners. This study measured the effects of retrieval practice and post-retrieval feedback among autistic and non-autistic adults (40 per group in Experiment 1; 80 per group in Experiment 2) residing in the United States. The task was divided into three sections. First, participants completed a “learning” block where they attempted to memorize unrelated word pairings (e.g., typing flower). Second was a “practice” block, in which they reviewed the recently learned word pairs. Practice trials consisted of retrieval practice with feedback, retrieval practice without feedback, and restudy. In restudy trials, participants reviewed the full word pair (e.g., typing flower) and selected the second word (e.g., flower) among a list of three similar words (e.g., blossom, bud, bloom). In retrieval practice trials, participants were given the first word (e.g., typing) and attempted to remember its corresponding word (e.g., flower). In feedback trials, after participants made their response, they were presented with the full word pair (e.g., typing flower) regardless of their accuracy. In the third and final “testing” block, participants’ memory for word pairs was tested once more. This allowed us to compare the effect of retrieval practice with feedback, retrieval practice without feedback, and restudying on final test performance. In addition, we measured the generalizability of the testing effect in different learning contexts (listening to word pairs in Experiment 1; reading word pairs in Experiment 2) and retrieval practice formats (cued recall in Experiment 1; multiple choice in Experiment 2). In both experiments, the benefits of feedback following retrieval practice were evident, and retrieval practice was a more effective learning strategy than restudying word pairs. These outcomes wer present in autistic and non-autistic learners alike. This study is the first to demonstrate that retrieval practice with feedback promotes learning in autistic adults. It is well-documented that autistic individuals face suboptimal educational and vocational outcomes compared to their non-autistic peers; thus, strategies that support learning are important to study. These findings contribute to a large body of existing research affirming retrieval practice as a flexible learning strategy that is most effective when accompanied by feedback and may have the potential to improve outcomes for autistic learners. En ligne : https://dx.doi.org/10.1177/13623613261464659 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Exploring the Experiences of First Nations Caregivers of Autistic Children in Canada: A Qualitative Community-Based Participatory Research Study / Grant BRUNO in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2288-2300 Titre : Exploring the Experiences of First Nations Caregivers of Autistic Children in Canada: A Qualitative Community-Based Participatory Research Study Type de document : texte imprimé Auteurs : Grant BRUNO, Auteur ; Mariam AHMAD, Auteur ; Carmella CUTKNIFE, Auteur ; Heather LITTLECHILD, Auteur ; Trina ERTMAN, Auteur ; Jacqueline SMITH, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; David NICHOLAS, Auteur Article en page(s) : p.2288-2300 Langues : Anglais (eng) Mots-clés : Indigenous  First Nation  Canada  autism  caregiver  community-based participatory research  neurodiversity Index. décimale : PER Périodiques Résumé : Autism exists across all populations, including among Indigenous Peoples, yet the experiences of First Nations caregivers of Autistic children remain significantly under-researched. This study explores the lived realities of caregivers in two First Nations communities: Maskwacîs (Alberta) and Six Nations of the Grand River (Ontario). Guided by a Community-Based Participatory Research (CBPR) approach and grounded in the nêhiyaw concept of wâhkôtowin (relationality), this research was co-led by the Autism Community Research Circle, which included Elders, Autistic individuals, caregivers, and professionals. Fourteen caregivers participated in semi-structured interviews, and thematic analysis revealed eight key themes: lack of understanding and recognition; caregiver burnout; challenges with diagnosis and clinical navigation; school experiences; advocacy; stigma and ableism; culture and ceremony; and acceptance and transformation. Caregivers identified barriers including jurisdictional divides, racism, and lack of culturally appropriate services, but also emphasized the importance of kinship, cultural identity, and community acceptance. Autism was often reframed through Indigenous worldviews as a gift from the Creator, highlighting a strength-based perspective rooted in relationality. This study addresses a critical gap in the literature and calls for culturally grounded, community-led autism supports that align with Indigenous knowledge systems. Findings offer essential insights to inform more responsive policy, programming, and future research.Lay Abstract Autism exists in every community, including among First Nations Peoples in Canada, yet very little research has explored the experiences of Indigenous families raising Autistic children. This study looked at what life is like for First Nations caregivers of Autistic children in two communities, Maskwacîs in Alberta and Six Nations of the Grand River in Ontario. The project was led in partnership with community members, including Autistic people, Elders, caregivers, and professionals, through the Autism Community Research Circle. Together, we used a community-based approach that followed local teachings and values, especially the Cree concept of wâhkôtowin, which means kinship and relationship. Fourteen caregivers took part in interviews where they shared their stories and perspectives. We learned that caregivers often face major challenges in getting autism diagnoses and finding appropriate supports and services. Many spoke about burnout, stigma, and racism, as well as frustration with school systems and health care providers. Despite these barriers, caregivers described the strength they draw from family, culture, and community. Cultural teachings, ceremonies, and language helped caregivers and their children feel proud, connected, and supported. Some families described autism as a gift from the Creator, showing how Indigenous ways of understanding autism can promote acceptance and belonging. This research shows the need for autism programs, services, and policies that are guided by Indigenous knowledge, community leadership, and cultural safety. It also highlights the importance of seeing autism through a strengths-based lens that values family relationships, community, and identity. By listening to First Nations caregivers, we can build more inclusive and culturally grounded supports for Autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613261464661 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Exploring the Experiences of First Nations Caregivers of Autistic Children in Canada: A Qualitative Community-Based Participatory Research Study [texte imprimé] / Grant BRUNO, Auteur ; Mariam AHMAD, Auteur ; Carmella CUTKNIFE, Auteur ; Heather LITTLECHILD, Auteur ; Trina ERTMAN, Auteur ; Jacqueline SMITH, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; David NICHOLAS, Auteur . - p.2288-2300. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2288-2300 Mots-clés : Indigenous  First Nation  Canada  autism  caregiver  community-based participatory research  neurodiversity Index. décimale : PER Périodiques Résumé : Autism exists across all populations, including among Indigenous Peoples, yet the experiences of First Nations caregivers of Autistic children remain significantly under-researched. This study explores the lived realities of caregivers in two First Nations communities: Maskwacîs (Alberta) and Six Nations of the Grand River (Ontario). Guided by a Community-Based Participatory Research (CBPR) approach and grounded in the nêhiyaw concept of wâhkôtowin (relationality), this research was co-led by the Autism Community Research Circle, which included Elders, Autistic individuals, caregivers, and professionals. Fourteen caregivers participated in semi-structured interviews, and thematic analysis revealed eight key themes: lack of understanding and recognition; caregiver burnout; challenges with diagnosis and clinical navigation; school experiences; advocacy; stigma and ableism; culture and ceremony; and acceptance and transformation. Caregivers identified barriers including jurisdictional divides, racism, and lack of culturally appropriate services, but also emphasized the importance of kinship, cultural identity, and community acceptance. Autism was often reframed through Indigenous worldviews as a gift from the Creator, highlighting a strength-based perspective rooted in relationality. This study addresses a critical gap in the literature and calls for culturally grounded, community-led autism supports that align with Indigenous knowledge systems. Findings offer essential insights to inform more responsive policy, programming, and future research.Lay Abstract Autism exists in every community, including among First Nations Peoples in Canada, yet very little research has explored the experiences of Indigenous families raising Autistic children. This study looked at what life is like for First Nations caregivers of Autistic children in two communities, Maskwacîs in Alberta and Six Nations of the Grand River in Ontario. The project was led in partnership with community members, including Autistic people, Elders, caregivers, and professionals, through the Autism Community Research Circle. Together, we used a community-based approach that followed local teachings and values, especially the Cree concept of wâhkôtowin, which means kinship and relationship. Fourteen caregivers took part in interviews where they shared their stories and perspectives. We learned that caregivers often face major challenges in getting autism diagnoses and finding appropriate supports and services. Many spoke about burnout, stigma, and racism, as well as frustration with school systems and health care providers. Despite these barriers, caregivers described the strength they draw from family, culture, and community. Cultural teachings, ceremonies, and language helped caregivers and their children feel proud, connected, and supported. Some families described autism as a gift from the Creator, showing how Indigenous ways of understanding autism can promote acceptance and belonging. This research shows the need for autism programs, services, and policies that are guided by Indigenous knowledge, community leadership, and cultural safety. It also highlights the importance of seeing autism through a strengths-based lens that values family relationships, community, and identity. By listening to First Nations caregivers, we can build more inclusive and culturally grounded supports for Autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613261464661 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

“Everyone Has a Different Body Constitution”: An Interpretative Phenomenological Analysis of the Experiences of Social Interaction and Related Supports in Chinese Autistic Postsecondary Students / Annabel Shin Ling TONG in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2301-2317 Titre : “Everyone Has a Different Body Constitution”: An Interpretative Phenomenological Analysis of the Experiences of Social Interaction and Related Supports in Chinese Autistic Postsecondary Students Type de document : texte imprimé Auteurs : Annabel Shin Ling TONG, Auteur ; Gary Yu Hin LAM, Auteur Article en page(s) : p.2301-2317 Langues : Anglais (eng) Mots-clés : sociocultural factors  social interaction  adults  interpretative phenomenological analysis  qualitative research  higher and further education  autism  interventions  neurodiversity  Hong Kong  interview Index. décimale : PER Périodiques Résumé : Little research has investigated how autistic individuals make sense of their experiences with socializing and interacting with others in postsecondary education. Autistic students are also dissatisfied with insufficient social interventions and the lack of autistic input in the design of such support. This study investigated the lived experiences of social interaction and related support in autistic postsecondary students. We conducted interviews with eight Chinese autistic students currently enrolled in a university or college in Hong Kong. Analysis using an interpretative phenomenological analysis approach identified four themes, including (1) their attempts and motivation to connect and socialize, which was often felt ineffective and exhausting; (2) the internal negotiation and delicate balance between masking and unmasking; (3) the crucial role of both formal and informal supports in coping with social and emotional challenges; and (4) social support and interventions needed to include diverse strategies ranging from skills building to neurodiversity-informed practices that respond to individual preferences and contexts. This study reveals cultural nuances in social preferences and masking that are not found in Western-dominant literature, which can inform more culturally responsive conceptualizations of interventions that enhance social experiences and promote authenticity.Lay Abstract Autistic students in university often face social challenges that affect their well-being, learning, and ability to connect with others. These struggles are not always well understood. By listening to their personal experiences, we can better support them in ways that they desire and create more inclusive environments. The study aimed to understand how autistic college or university students in Hong Kong experience social interaction and the support they receive. It focused on their personal stories to explore what helps or hinders their ability to interact and socialize with others. We interviewed eight autistic students in Cantonese Chinese. They shared their thoughts and feelings about their social lives and the support they received. The researcher analyzed these interviews to find unique meanings in each participant and the common themes and patterns among their experiences. The study found four main themes. First, socializing is challenging but meaningful. Second, many students masked their autistic traits and found it exhausting, but they also valued the importance and benefits of doing it. Third, support from peers, teachers, and professionals helps them cope. Fourth, social interventions and support should be personalized and should value their preferences and perspectives. The study highlights that masking can be both harmful and helpful, depending on the situation and culture. Our results also show that autistic students want to be themselves but often feel pressured to fit in. These insights challenge the idea that all support should focus on changing autistic behavior, while also supporting the need for autistic students to learn to change and adapt to society. En ligne : https://dx.doi.org/10.1177/13623613261466305 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] “Everyone Has a Different Body Constitution”: An Interpretative Phenomenological Analysis of the Experiences of Social Interaction and Related Supports in Chinese Autistic Postsecondary Students [texte imprimé] / Annabel Shin Ling TONG, Auteur ; Gary Yu Hin LAM, Auteur . - p.2301-2317. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2301-2317 Mots-clés : sociocultural factors  social interaction  adults  interpretative phenomenological analysis  qualitative research  higher and further education  autism  interventions  neurodiversity  Hong Kong  interview Index. décimale : PER Périodiques Résumé : Little research has investigated how autistic individuals make sense of their experiences with socializing and interacting with others in postsecondary education. Autistic students are also dissatisfied with insufficient social interventions and the lack of autistic input in the design of such support. This study investigated the lived experiences of social interaction and related support in autistic postsecondary students. We conducted interviews with eight Chinese autistic students currently enrolled in a university or college in Hong Kong. Analysis using an interpretative phenomenological analysis approach identified four themes, including (1) their attempts and motivation to connect and socialize, which was often felt ineffective and exhausting; (2) the internal negotiation and delicate balance between masking and unmasking; (3) the crucial role of both formal and informal supports in coping with social and emotional challenges; and (4) social support and interventions needed to include diverse strategies ranging from skills building to neurodiversity-informed practices that respond to individual preferences and contexts. This study reveals cultural nuances in social preferences and masking that are not found in Western-dominant literature, which can inform more culturally responsive conceptualizations of interventions that enhance social experiences and promote authenticity.Lay Abstract Autistic students in university often face social challenges that affect their well-being, learning, and ability to connect with others. These struggles are not always well understood. By listening to their personal experiences, we can better support them in ways that they desire and create more inclusive environments. The study aimed to understand how autistic college or university students in Hong Kong experience social interaction and the support they receive. It focused on their personal stories to explore what helps or hinders their ability to interact and socialize with others. We interviewed eight autistic students in Cantonese Chinese. They shared their thoughts and feelings about their social lives and the support they received. The researcher analyzed these interviews to find unique meanings in each participant and the common themes and patterns among their experiences. The study found four main themes. First, socializing is challenging but meaningful. Second, many students masked their autistic traits and found it exhausting, but they also valued the importance and benefits of doing it. Third, support from peers, teachers, and professionals helps them cope. Fourth, social interventions and support should be personalized and should value their preferences and perspectives. The study highlights that masking can be both harmful and helpful, depending on the situation and culture. Our results also show that autistic students want to be themselves but often feel pressured to fit in. These insights challenge the idea that all support should focus on changing autistic behavior, while also supporting the need for autistic students to learn to change and adapt to society. En ligne : https://dx.doi.org/10.1177/13623613261466305 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

A Qualitative Study Exploring the Acceptability of Taking Part in a Large Multicentre RCT of Medication for Anxiety in Autistic Adults (the STRATA Trial) / Alba X. REALPE in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2318-2333 Titre : A Qualitative Study Exploring the Acceptability of Taking Part in a Large Multicentre RCT of Medication for Anxiety in Autistic Adults (the STRATA Trial) Type de document : texte imprimé Auteurs : Alba X. REALPE, Auteur ; Jade Eloise NORRIS, Auteur ; Ava LORENC, Auteur ; Leonora COTTON, Auteur ; Zoe MORGAN, Auteur ; Aws SADIK, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur ; null NULL, Auteur ; David CARMICHAEL, Auteur ; Madeleine COCHRANE, Auteur ; Leonora COTTON, Auteur ; Abbie COTTRELL, Auteur ; Martin HOUSE, Auteur ; David KESSLER, Auteur ; Amanda LEWIS, Auteur ; Ava LORENC, Auteur ; Stephanie MACNEILL, Auteur ; Tim MEDLICOTT, Auteur ; Nicola MILLS, Auteur ; Maximiliano Vazquez MORALES, Auteur ; Jade Eloise NORRIS, Auteur ; Sunita PROCTER, Auteur ; Dheeraj RAI, Auteur ; Alba X REALPE, Auteur ; Jodi TAYLOR, Auteur ; Joanna THORN, Auteur ; Nicholas TURNER, Auteur ; Doug WEBB, Auteur ; Nicola WILES, Auteur ; Sarah DOUGLAS, Auteur ; Peter HALE, Auteur ; Sarah O’BRIEN, Auteur ; Amy WALKER, Auteur ; Jack WELCH, Auteur ; Claire CREE, Auteur ; Liz MCCULLAGH, Auteur ; Alex PARSONS, Auteur ; Jake ALBERTS, Auteur ; Monalisa BORA-WHITE, Auteur ; Alison CAPE, Auteur ; Victoria NIMMO-SMITH, Auteur ; Krist NOONAN, Auteur ; Dheeraj RAI, Auteur ; Aws SADIK, Auteur ; Holly SPRAY, Auteur ; Alexandra YOUNG, Auteur ; Gaurav BHATTARAI, Auteur ; Emma BUTLER, Auteur ; Suzee CHANG, Auteur ; Amy DAVIS, Auteur ; Laura JENKINS, Auteur ; Rose JONES, Auteur ; Laura LORD, Auteur ; Ariska BARBOSA, Auteur ; Didiana DOS SANTOS, Auteur ; Abhishek JHA, Auteur ; Sujata SONI, Auteur ; Kerry FLAHIVE, Auteur ; Emma HORNE, Auteur ; Liz LENAGHAN, Auteur ; Rani PATHANIA, Auteur ; Hafsa SHEIKH, Auteur ; Katie EWART, Auteur ; Anneka NEWMAN, Auteur ; Karen POON, Auteur ; Prasanna RAJBHANDARI, Auteur ; Amy GREEN, Auteur ; Brionne THOMAS, Auteur ; Regi ALEXANDER, Auteur ; Ayomipo Jeremiah AMIOLA, Auteur ; Peter LANGDON, Auteur ; Inder SAWHNEY, Auteur ; Lucy ALLENDER, Auteur ; Wendy ANDRUSJAK, Auteur ; Conor DAVIDSON, Auteur ; Sana FATIMA, Auteur ; Sharmistha GHOSH, Auteur ; Lisa HACKNEY, Auteur ; Alwyn KAM, Auteur ; Keri LODGE, Auteur ; Charlotte MACKNEY-HUDSON, Auteur ; Sarah PARKINSON, Auteur ; Holly LIVESEY, Auteur ; Eleni TSAPPIS, Auteur ; Sharon AUJLA, Auteur ; Sarah BAILLON, Auteur ; Meera BENTLEY, Auteur ; Asit BISWAS, Auteur ; Joy Fellows DAVIS, Auteur ; Ganesh KUNJITHAPATHAM, Auteur ; Rebekah POLE, Auteur ; Samuel TROMANS, Auteur ; Regi ALEXANDER, Auteur ; Catherine HAIG, Auteur ; Stephanie HOWARD, Auteur ; Ayomipo Jeremiah AMIOLA, Auteur ; Charlotte MAPLANKA, Auteur ; Gisela PEREZ-OLIVAS, Auteur ; Jack CHESHIRE, Auteur ; Jacqueline DZIEWANOWSKA, Auteur ; Angela HOLLAND, Auteur ; Puja KOCHHAR, Auteur ; Sowmy MURICKAL, Auteur ; Susan SMITH, Auteur ; Joshua CUDWORTH, Auteur ; Solveig HASELBACH, Auteur ; Jeremy MUDUNKOTUWE, Auteur ; Raja MUKHERJEE, Auteur ; Maria DEL PICCOLO, Auteur ; Ashkan SOWHANI, Auteur ; Emma GLASSON, Auteur ; Katherine HATCH, Auteur ; Helen LEONARD, Auteur ; Sergio STARKSTEIN, Auteur ; Bradleigh HAYHOW, Auteur ; Eleanor TEO, Auteur ; Don HULME, Auteur ; Katrina ORR, Auteur ; Ailsa RUSSELL, Auteur ; Traolach BRUGHA, Auteur ; Zoe MORGAN, Auteur ; David BALDWIN, Auteur ; Peter LANGDON, Auteur ; Jemma REGAN, Auteur ; Jonathan MARTIN, Auteur ; Alice MADDEN, Auteur ; Kathryn JANES, Auteur Article en page(s) : p.2318-2333 Langues : Anglais (eng) Mots-clés : autism  anxiety  randomisation  blinding  RCT  neurodevelopmental conditions  research participation  underserved populations  trial methodology  qualitative research Index. décimale : PER Périodiques Résumé : Autistic adults experience significant physical and mental health inequities yet remain underrepresented in clinical research, with few randomised controlled trials to guide care. Randomised controlled trials (RCTs) of selective serotonin reuptake inhibitors (SSRIs) are limited, underpowered, and rarely focused on anxiety. Anticipating recruitment challenges in a large RCT (“STRATA”) evaluating sertraline for anxiety in autistic adults, we embedded qualitative research to support recruitment, retention, and monitoring trial acceptability. We organised our findings into the theoretical framework of acceptability (TFA) constructs to assess the acceptability of trial design and delivery for autistic adults. We conducted 64 interviews with autistic adults at different trial stages. Data were analysed thematically and mapped to the seven TFA constructs. Participants considered involvement in a blinded medication RCT acceptable across the TFA domains, which they weighed differently when reflecting on anticipated versus experienced aspects of participation. STRATA was a low-burden, ethically sound, and methodologically coherent study for most participants, who reported minimal trade-offs, potential benefits, and self-efficacy in managing anxiety and research participation. Acceptability of trial participation is dynamic and multidimensional, which can be enhanced by meaningful involvement of autistic people throughout the research cycle, accessible participant information design, and responsive ongoing engagement.Lay Abstract Autistic adults often experience poorer physical and mental health than the general population. Yet they are rarely included in clinical research. There have been very few high-quality studies (RCTs) testing medications for anxiety in this group. Most existing studies are small and focus on other outcomes. They don’t provide clear guidance for care. To help address this gap, the STRATA trial tested whether the medication sertraline (an SSRI) can reduce anxiety in autistic adults. Recruiting participants for such trials can be challenging. We included a qualitative study to better understand what helps or hinders people from joining and staying in the trial. We aimed to explore what aspects of the STRATA trial made it easier or more appealing for autistic adults to take part. We used a framework called the theoretical framework of acceptability (TFA) to define acceptability in this context. We interviewed 64 autistic adults at different stages of the trial, including 2 who chose not to take part. Most participants found the trial acceptable when assessed against the seven aspects of the TFA (i.e., how someone feels about taking part, how much effort is needed, whether taking part fits with a person’s values, how well someone understands the study, what someone may have to give up, whether the study is likely to help, and how confident someone feels about taking part). In summary, they felt positive about taking part. They thought the study was ethical and easy to understand and believed it could benefit them. Many also felt more confident in managing their anxiety and contributing to research. STRATA is one of the largest studies of its kind; 318 autistic adults took part across the United Kingdom and Australia. The trial had a very high retention rate. Ninety-two per cent of participants stayed until the main outcome point, and 87% completed the full 52 weeks. How acceptable clinical trials like STRATA are may change during their course, and researchers need to be responsive. To do this well, researchers should involve autistic people meaningfully throughout the research process and from an early stage. Researchers also need to respect individual communication needs and provide clear and accessible information. These approaches were central to STRATA and supported by other studies. En ligne : https://dx.doi.org/10.1177/13623613261466306 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] A Qualitative Study Exploring the Acceptability of Taking Part in a Large Multicentre RCT of Medication for Anxiety in Autistic Adults (the STRATA Trial) [texte imprimé] / Alba X. REALPE, Auteur ; Jade Eloise NORRIS, Auteur ; Ava LORENC, Auteur ; Leonora COTTON, Auteur ; Zoe MORGAN, Auteur ; Aws SADIK, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur ; null NULL, Auteur ; David CARMICHAEL, Auteur ; Madeleine COCHRANE, Auteur ; Leonora COTTON, Auteur ; Abbie COTTRELL, Auteur ; Martin HOUSE, Auteur ; David KESSLER, Auteur ; Amanda LEWIS, Auteur ; Ava LORENC, Auteur ; Stephanie MACNEILL, Auteur ; Tim MEDLICOTT, Auteur ; Nicola MILLS, Auteur ; Maximiliano Vazquez MORALES, Auteur ; Jade Eloise NORRIS, Auteur ; Sunita PROCTER, Auteur ; Dheeraj RAI, Auteur ; Alba X REALPE, Auteur ; Jodi TAYLOR, Auteur ; Joanna THORN, Auteur ; Nicholas TURNER, Auteur ; Doug WEBB, Auteur ; Nicola WILES, Auteur ; Sarah DOUGLAS, Auteur ; Peter HALE, Auteur ; Sarah O’BRIEN, Auteur ; Amy WALKER, Auteur ; Jack WELCH, Auteur ; Claire CREE, Auteur ; Liz MCCULLAGH, Auteur ; Alex PARSONS, Auteur ; Jake ALBERTS, Auteur ; Monalisa BORA-WHITE, Auteur ; Alison CAPE, Auteur ; Victoria NIMMO-SMITH, Auteur ; Krist NOONAN, Auteur ; Dheeraj RAI, Auteur ; Aws SADIK, Auteur ; Holly SPRAY, Auteur ; Alexandra YOUNG, Auteur ; Gaurav BHATTARAI, Auteur ; Emma BUTLER, Auteur ; Suzee CHANG, Auteur ; Amy DAVIS, Auteur ; Laura JENKINS, Auteur ; Rose JONES, Auteur ; Laura LORD, Auteur ; Ariska BARBOSA, Auteur ; Didiana DOS SANTOS, Auteur ; Abhishek JHA, Auteur ; Sujata SONI, Auteur ; Kerry FLAHIVE, Auteur ; Emma HORNE, Auteur ; Liz LENAGHAN, Auteur ; Rani PATHANIA, Auteur ; Hafsa SHEIKH, Auteur ; Katie EWART, Auteur ; Anneka NEWMAN, Auteur ; Karen POON, Auteur ; Prasanna RAJBHANDARI, Auteur ; Amy GREEN, Auteur ; Brionne THOMAS, Auteur ; Regi ALEXANDER, Auteur ; Ayomipo Jeremiah AMIOLA, Auteur ; Peter LANGDON, Auteur ; Inder SAWHNEY, Auteur ; Lucy ALLENDER, Auteur ; Wendy ANDRUSJAK, Auteur ; Conor DAVIDSON, Auteur ; Sana FATIMA, Auteur ; Sharmistha GHOSH, Auteur ; Lisa HACKNEY, Auteur ; Alwyn KAM, Auteur ; Keri LODGE, Auteur ; Charlotte MACKNEY-HUDSON, Auteur ; Sarah PARKINSON, Auteur ; Holly LIVESEY, Auteur ; Eleni TSAPPIS, Auteur ; Sharon AUJLA, Auteur ; Sarah BAILLON, Auteur ; Meera BENTLEY, Auteur ; Asit BISWAS, Auteur ; Joy Fellows DAVIS, Auteur ; Ganesh KUNJITHAPATHAM, Auteur ; Rebekah POLE, Auteur ; Samuel TROMANS, Auteur ; Regi ALEXANDER, Auteur ; Catherine HAIG, Auteur ; Stephanie HOWARD, Auteur ; Ayomipo Jeremiah AMIOLA, Auteur ; Charlotte MAPLANKA, Auteur ; Gisela PEREZ-OLIVAS, Auteur ; Jack CHESHIRE, Auteur ; Jacqueline DZIEWANOWSKA, Auteur ; Angela HOLLAND, Auteur ; Puja KOCHHAR, Auteur ; Sowmy MURICKAL, Auteur ; Susan SMITH, Auteur ; Joshua CUDWORTH, Auteur ; Solveig HASELBACH, Auteur ; Jeremy MUDUNKOTUWE, Auteur ; Raja MUKHERJEE, Auteur ; Maria DEL PICCOLO, Auteur ; Ashkan SOWHANI, Auteur ; Emma GLASSON, Auteur ; Katherine HATCH, Auteur ; Helen LEONARD, Auteur ; Sergio STARKSTEIN, Auteur ; Bradleigh HAYHOW, Auteur ; Eleanor TEO, Auteur ; Don HULME, Auteur ; Katrina ORR, Auteur ; Ailsa RUSSELL, Auteur ; Traolach BRUGHA, Auteur ; Zoe MORGAN, Auteur ; David BALDWIN, Auteur ; Peter LANGDON, Auteur ; Jemma REGAN, Auteur ; Jonathan MARTIN, Auteur ; Alice MADDEN, Auteur ; Kathryn JANES, Auteur . - p.2318-2333. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2318-2333 Mots-clés : autism  anxiety  randomisation  blinding  RCT  neurodevelopmental conditions  research participation  underserved populations  trial methodology  qualitative research Index. décimale : PER Périodiques Résumé : Autistic adults experience significant physical and mental health inequities yet remain underrepresented in clinical research, with few randomised controlled trials to guide care. Randomised controlled trials (RCTs) of selective serotonin reuptake inhibitors (SSRIs) are limited, underpowered, and rarely focused on anxiety. Anticipating recruitment challenges in a large RCT (“STRATA”) evaluating sertraline for anxiety in autistic adults, we embedded qualitative research to support recruitment, retention, and monitoring trial acceptability. We organised our findings into the theoretical framework of acceptability (TFA) constructs to assess the acceptability of trial design and delivery for autistic adults. We conducted 64 interviews with autistic adults at different trial stages. Data were analysed thematically and mapped to the seven TFA constructs. Participants considered involvement in a blinded medication RCT acceptable across the TFA domains, which they weighed differently when reflecting on anticipated versus experienced aspects of participation. STRATA was a low-burden, ethically sound, and methodologically coherent study for most participants, who reported minimal trade-offs, potential benefits, and self-efficacy in managing anxiety and research participation. Acceptability of trial participation is dynamic and multidimensional, which can be enhanced by meaningful involvement of autistic people throughout the research cycle, accessible participant information design, and responsive ongoing engagement.Lay Abstract Autistic adults often experience poorer physical and mental health than the general population. Yet they are rarely included in clinical research. There have been very few high-quality studies (RCTs) testing medications for anxiety in this group. Most existing studies are small and focus on other outcomes. They don’t provide clear guidance for care. To help address this gap, the STRATA trial tested whether the medication sertraline (an SSRI) can reduce anxiety in autistic adults. Recruiting participants for such trials can be challenging. We included a qualitative study to better understand what helps or hinders people from joining and staying in the trial. We aimed to explore what aspects of the STRATA trial made it easier or more appealing for autistic adults to take part. We used a framework called the theoretical framework of acceptability (TFA) to define acceptability in this context. We interviewed 64 autistic adults at different stages of the trial, including 2 who chose not to take part. Most participants found the trial acceptable when assessed against the seven aspects of the TFA (i.e., how someone feels about taking part, how much effort is needed, whether taking part fits with a person’s values, how well someone understands the study, what someone may have to give up, whether the study is likely to help, and how confident someone feels about taking part). In summary, they felt positive about taking part. They thought the study was ethical and easy to understand and believed it could benefit them. Many also felt more confident in managing their anxiety and contributing to research. STRATA is one of the largest studies of its kind; 318 autistic adults took part across the United Kingdom and Australia. The trial had a very high retention rate. Ninety-two per cent of participants stayed until the main outcome point, and 87% completed the full 52 weeks. How acceptable clinical trials like STRATA are may change during their course, and researchers need to be responsive. To do this well, researchers should involve autistic people meaningfully throughout the research process and from an early stage. Researchers also need to respect individual communication needs and provide clear and accessible information. These approaches were central to STRATA and supported by other studies. En ligne : https://dx.doi.org/10.1177/13623613261466306 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Executive Functioning Is Linked to Internalizing Symptoms in Autistic Adults With Higher Support Needs / Ethan GREENSTEIN in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2334-2349 Titre : Executive Functioning Is Linked to Internalizing Symptoms in Autistic Adults With Higher Support Needs Type de document : texte imprimé Auteurs : Ethan GREENSTEIN, Auteur ; Nancy Raitano LEE, Auteur ; Goldie A. MCQUAID, Auteur ; Gregory L. WALLACE, Auteur Article en page(s) : p.2334-2349 Langues : Anglais (eng) Mots-clés : autism  intellectual disability  adulthood  executive function  emotion regulation  anxiety  depression  higher support needs Index. décimale : PER Périodiques Résumé : Executive function (EF) refers to a set of cognitive skills essential for self-regulation, problem-solving, and goal-directed behavior. Although EF’s relationship with co-occurring depression and anxiety symptoms is well documented in autistic individuals, particularly children without intellectual disability (ID), far less is known about this relationship in autistic adults with higher support needs, including those with ID. The present study addresses this gap by examining associations between three EF components (flexibility, emotion regulation, and inhibitory control) and symptoms of anxiety and depression in 486 autistic adults with higher support needs (ages 18–68; M = 31.07 years), recruited through the Simons Powering Autism Research for Knowledge (SPARK) Research Match service. Caregivers completed the Flexibility Scale, the Barkley Deficits in Executive Functioning Scale (inhibitory control and emotion regulation subscales), and the Anxiety, Depression, and Mood Scale (anxiety and depression subscales). Hierarchical linear regressions, controlling for age, sex assigned at birth, likely cognitive impairment, and caregiver educational attainment, revealed that greater difficulties with flexibility and emotion regulation were significantly associated with elevated anxiety and depression symptoms, whereas inhibitory control difficulties were not. These findings identify flexibility and emotion regulation as key correlates of internalizing symptoms in autistic adults with higher support needs, highlighting these domains as potential targets for future mechanistic and intervention research aimed at reducing anxiety and depression symptoms in this group.Lay Abstract Some everyday thinking skills help people manage feelings, handle change, and pause before acting. These are called executive functions. Most studies on these skills in autism have focused on children or on adults who do not have an intellectual disability, so autistic adults who need higher levels of support are often left out of research. In this study, caregivers answered questions about these thinking skills and about anxiety and depression for a large group of autistic adults with higher support needs, including people with intellectual disability. The results showed that greater challenges with flexibility and emotion regulation were linked with more anxiety and depression symptoms, suggesting that flexibility and emotion regulation could be an important focus for intervention development and support provision efforts aimed at reducing anxiety and depression symptoms in this group. En ligne : https://dx.doi.org/10.1177/13623613261466302 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Executive Functioning Is Linked to Internalizing Symptoms in Autistic Adults With Higher Support Needs [texte imprimé] / Ethan GREENSTEIN, Auteur ; Nancy Raitano LEE, Auteur ; Goldie A. MCQUAID, Auteur ; Gregory L. WALLACE, Auteur . - p.2334-2349. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2334-2349 Mots-clés : autism  intellectual disability  adulthood  executive function  emotion regulation  anxiety  depression  higher support needs Index. décimale : PER Périodiques Résumé : Executive function (EF) refers to a set of cognitive skills essential for self-regulation, problem-solving, and goal-directed behavior. Although EF’s relationship with co-occurring depression and anxiety symptoms is well documented in autistic individuals, particularly children without intellectual disability (ID), far less is known about this relationship in autistic adults with higher support needs, including those with ID. The present study addresses this gap by examining associations between three EF components (flexibility, emotion regulation, and inhibitory control) and symptoms of anxiety and depression in 486 autistic adults with higher support needs (ages 18–68; M = 31.07 years), recruited through the Simons Powering Autism Research for Knowledge (SPARK) Research Match service. Caregivers completed the Flexibility Scale, the Barkley Deficits in Executive Functioning Scale (inhibitory control and emotion regulation subscales), and the Anxiety, Depression, and Mood Scale (anxiety and depression subscales). Hierarchical linear regressions, controlling for age, sex assigned at birth, likely cognitive impairment, and caregiver educational attainment, revealed that greater difficulties with flexibility and emotion regulation were significantly associated with elevated anxiety and depression symptoms, whereas inhibitory control difficulties were not. These findings identify flexibility and emotion regulation as key correlates of internalizing symptoms in autistic adults with higher support needs, highlighting these domains as potential targets for future mechanistic and intervention research aimed at reducing anxiety and depression symptoms in this group.Lay Abstract Some everyday thinking skills help people manage feelings, handle change, and pause before acting. These are called executive functions. Most studies on these skills in autism have focused on children or on adults who do not have an intellectual disability, so autistic adults who need higher levels of support are often left out of research. In this study, caregivers answered questions about these thinking skills and about anxiety and depression for a large group of autistic adults with higher support needs, including people with intellectual disability. The results showed that greater challenges with flexibility and emotion regulation were linked with more anxiety and depression symptoms, suggesting that flexibility and emotion regulation could be an important focus for intervention development and support provision efforts aimed at reducing anxiety and depression symptoms in this group. En ligne : https://dx.doi.org/10.1177/13623613261466302 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Walking Alongside: Chinese Mothers’ Lived Experiences of Supporting Autistic Youth on the Journey to Employment / Ping DONG in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2350-2365 Titre : Walking Alongside: Chinese Mothers’ Lived Experiences of Supporting Autistic Youth on the Journey to Employment Type de document : texte imprimé Auteurs : Ping DONG, Auteur ; Tianxi XU, Auteur Article en page(s) : p.2350-2365 Langues : Anglais (eng) Mots-clés : autism  mother  transition  employment  qualitative research  China Index. décimale : PER Périodiques Résumé : Mothers’ persistent involvement is a critical but underexplored area of autistic youth’s transition to employment. Using a qualitative research design, this study interviewed five mothers, two fathers, five autistic youth, and seven teachers to explore the lived experiences of Chinese mothers who supported autistic youth towards employment. By foregrounding mothers’ voices, five interconnected themes were developed and represented in a spiralling model: (1) navigating educational pathways, (2) preparing for employment from childhood, (3) building a long-term support system, (4) balancing hope and uncertainty in lifelong planning, and (5) redefining motherhood over time. These findings highlight that maternal support for autistic youth evolves across the lifespan, revealing the dynamic strategies and roles mothers adopt to foster their children’s development and work preparation, unfolding progressively as children move towards adulthood. These insights underscore the need for coordinated, lifelong autism services and targeted parent training programmes that strengthen family-centred and gender-sensitive support.Lay Abstract Supporting a child with autism as they grow into adulthood and enter the workforce can be a long and challenging journey. Mothers usually play a key role in helping autistic youth prepare for work. Yet, we don’t know much about how mothers support autistic youth as they prepare for work. This study aims to explore the experiences of Chinese mothers who have supported autistic youth towards employment. Through interviews with five mothers, two fathers, five autistic youths, and seven teachers, the research identifies five key aspects of mothers’ support: (a) helping children access schooling and manage their learning, (b) preparing them for future jobs from an early age, (c) building long-term support networks for autistic youth, (d) balancing hope and worry about the future, and (e) adapting their multiple roles as mothers over time. The study shows that maternal support is not limited to a single stage of autistic youth’s lives but evolves continuously from childhood into early adulthood. These findings reveal the various strategies and roles that mothers adopt to help their children, while also highlighting the need for services and programmes that can better help families. Understanding mothers’ experiences can help schools, policymakers, and service providers design support that prepares autistic young people for work while also caring for their caregivers’ well-being. En ligne : https://dx.doi.org/10.1177/13623613261467798 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Walking Alongside: Chinese Mothers’ Lived Experiences of Supporting Autistic Youth on the Journey to Employment [texte imprimé] / Ping DONG, Auteur ; Tianxi XU, Auteur . - p.2350-2365. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2350-2365 Mots-clés : autism  mother  transition  employment  qualitative research  China Index. décimale : PER Périodiques Résumé : Mothers’ persistent involvement is a critical but underexplored area of autistic youth’s transition to employment. Using a qualitative research design, this study interviewed five mothers, two fathers, five autistic youth, and seven teachers to explore the lived experiences of Chinese mothers who supported autistic youth towards employment. By foregrounding mothers’ voices, five interconnected themes were developed and represented in a spiralling model: (1) navigating educational pathways, (2) preparing for employment from childhood, (3) building a long-term support system, (4) balancing hope and uncertainty in lifelong planning, and (5) redefining motherhood over time. These findings highlight that maternal support for autistic youth evolves across the lifespan, revealing the dynamic strategies and roles mothers adopt to foster their children’s development and work preparation, unfolding progressively as children move towards adulthood. These insights underscore the need for coordinated, lifelong autism services and targeted parent training programmes that strengthen family-centred and gender-sensitive support.Lay Abstract Supporting a child with autism as they grow into adulthood and enter the workforce can be a long and challenging journey. Mothers usually play a key role in helping autistic youth prepare for work. Yet, we don’t know much about how mothers support autistic youth as they prepare for work. This study aims to explore the experiences of Chinese mothers who have supported autistic youth towards employment. Through interviews with five mothers, two fathers, five autistic youths, and seven teachers, the research identifies five key aspects of mothers’ support: (a) helping children access schooling and manage their learning, (b) preparing them for future jobs from an early age, (c) building long-term support networks for autistic youth, (d) balancing hope and worry about the future, and (e) adapting their multiple roles as mothers over time. The study shows that maternal support is not limited to a single stage of autistic youth’s lives but evolves continuously from childhood into early adulthood. These findings reveal the various strategies and roles that mothers adopt to help their children, while also highlighting the need for services and programmes that can better help families. Understanding mothers’ experiences can help schools, policymakers, and service providers design support that prepares autistic young people for work while also caring for their caregivers’ well-being. En ligne : https://dx.doi.org/10.1177/13623613261467798 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Prevalence, Distribution, Co-occurring Neurodevelopmental Conditions, and Associated Factors of Autism Among Children in Northern Uganda / Ouma SIMPLE in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2366-2380 Titre : Prevalence, Distribution, Co-occurring Neurodevelopmental Conditions, and Associated Factors of Autism Among Children in Northern Uganda Type de document : texte imprimé Auteurs : Ouma SIMPLE, Auteur ; Edward John ESTLIN, Auteur ; Kennedy Kosko OKELLO, Auteur ; Morrish Obol OKELLO, Auteur ; Franceska AKELLO, Auteur ; James OKELLO, Auteur ; Freddy ODONG, Auteur ; Esther SSEBYALA, Auteur ; Richard IDRO, Auteur ; Catherine ABBO, Auteur ; Jonathan VINCENT, Auteur Article en page(s) : p.2366-2380 Langues : Anglais (eng) Mots-clés : autism  neurodevelopmental conditions  prevalence  diagnosis  and Africa Index. décimale : PER Périodiques Résumé : Autism is a neurodevelopmental condition characterized by differences in social interaction, communication and behaviour. Despite a global prevalence of one in 127 individuals, autism remains underdiagnosed in low-resource settings. We examined the epidemiology of autism among children aged 2 to 9 years in Northern Uganda. Using multistage sampling, 1,139 children were screened for neurodevelopmental conditions using the validated 23Q screening tool. Children who screened positive underwent clinical assessment, and suspected cases received specialist assessments according to DSM-5-TR criteria. Descriptive statistics and Firth logistic regression were employed for analysis. The mean age was 5.38 years (SD = 2.07), and 51.0% were male. The prevalence of autism was 10.5 per 1,000 children (95% confidence interval [CI] [6.0, 18.5]), of whom 75.0% had co-occurring neurodevelopmental conditions. Autistic children were more likely to have intellectual disability, epilepsy, learning disabilities, global developmental delay, attention-deficit/hyperactivity disorder, dyslexia, cerebral palsy, hearing impairment and speech delay (p < .0045). After adjusting for gender, family history of autism (adjusted odds ratio [aOR] = 6.95, 95% CI [1.60, 30.23]), teenage motherhood (aOR = 8.30, 95% CI [1.30, 53.12]), breech presentation (aOR = 12.23, 95% CI [1.83, 81.64]), and oxygen resuscitation at birth (aOR = 4.56, 95% CI [1.08, 19.33]) were independent predictors of autism. These findings highlight the need to strengthen early identification and targeted services for autistic children in low-resource settings.Lay Abstract Autism affects how people communicate, interact, and process information, and about one in 127 people worldwide are autistic. In low-resource settings, autism is often under-researched and underdiagnosed. We carried out a study in Northern Uganda to estimate how common autism is among children aged 2 to 9 years, to identify co-occurring neurodevelopmental conditions, and to explore factors that may increase likelihood of autism. We enrolled 1,139 children from diverse communities using a multi-step sampling process. After parental consent, one child per household was screened with the 23Q neurodevelopmental screener. Children with possible conditions received further assessment by trained health care workers, and likely cases were confirmed by specialist clinicians using DSM-5-TR diagnostic criteria. Approximately 1 in 95 children were autistic, and none had previously received a diagnosis of autism. The average age of the children diagnosed with autism was about 5 years, and slightly more than half were boys, and most lived in rural areas. Most autistic children (82%) had at least one additional neurodevelopmental condition, such as intellectual disability, learning delays, or epilepsy. Autism was linked to family history, teenage motherhood, and certain birth complications. Improving maternal care, community awareness, and early diagnosis could better support autistic children in Northern Uganda. En ligne : https://dx.doi.org/10.1177/13623613261468802 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Prevalence, Distribution, Co-occurring Neurodevelopmental Conditions, and Associated Factors of Autism Among Children in Northern Uganda [texte imprimé] / Ouma SIMPLE, Auteur ; Edward John ESTLIN, Auteur ; Kennedy Kosko OKELLO, Auteur ; Morrish Obol OKELLO, Auteur ; Franceska AKELLO, Auteur ; James OKELLO, Auteur ; Freddy ODONG, Auteur ; Esther SSEBYALA, Auteur ; Richard IDRO, Auteur ; Catherine ABBO, Auteur ; Jonathan VINCENT, Auteur . - p.2366-2380. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2366-2380 Mots-clés : autism  neurodevelopmental conditions  prevalence  diagnosis  and Africa Index. décimale : PER Périodiques Résumé : Autism is a neurodevelopmental condition characterized by differences in social interaction, communication and behaviour. Despite a global prevalence of one in 127 individuals, autism remains underdiagnosed in low-resource settings. We examined the epidemiology of autism among children aged 2 to 9 years in Northern Uganda. Using multistage sampling, 1,139 children were screened for neurodevelopmental conditions using the validated 23Q screening tool. Children who screened positive underwent clinical assessment, and suspected cases received specialist assessments according to DSM-5-TR criteria. Descriptive statistics and Firth logistic regression were employed for analysis. The mean age was 5.38 years (SD = 2.07), and 51.0% were male. The prevalence of autism was 10.5 per 1,000 children (95% confidence interval [CI] [6.0, 18.5]), of whom 75.0% had co-occurring neurodevelopmental conditions. Autistic children were more likely to have intellectual disability, epilepsy, learning disabilities, global developmental delay, attention-deficit/hyperactivity disorder, dyslexia, cerebral palsy, hearing impairment and speech delay (p < .0045). After adjusting for gender, family history of autism (adjusted odds ratio [aOR] = 6.95, 95% CI [1.60, 30.23]), teenage motherhood (aOR = 8.30, 95% CI [1.30, 53.12]), breech presentation (aOR = 12.23, 95% CI [1.83, 81.64]), and oxygen resuscitation at birth (aOR = 4.56, 95% CI [1.08, 19.33]) were independent predictors of autism. These findings highlight the need to strengthen early identification and targeted services for autistic children in low-resource settings.Lay Abstract Autism affects how people communicate, interact, and process information, and about one in 127 people worldwide are autistic. In low-resource settings, autism is often under-researched and underdiagnosed. We carried out a study in Northern Uganda to estimate how common autism is among children aged 2 to 9 years, to identify co-occurring neurodevelopmental conditions, and to explore factors that may increase likelihood of autism. We enrolled 1,139 children from diverse communities using a multi-step sampling process. After parental consent, one child per household was screened with the 23Q neurodevelopmental screener. Children with possible conditions received further assessment by trained health care workers, and likely cases were confirmed by specialist clinicians using DSM-5-TR diagnostic criteria. Approximately 1 in 95 children were autistic, and none had previously received a diagnosis of autism. The average age of the children diagnosed with autism was about 5 years, and slightly more than half were boys, and most lived in rural areas. Most autistic children (82%) had at least one additional neurodevelopmental condition, such as intellectual disability, learning delays, or epilepsy. Autism was linked to family history, teenage motherhood, and certain birth complications. Improving maternal care, community awareness, and early diagnosis could better support autistic children in Northern Uganda. En ligne : https://dx.doi.org/10.1177/13623613261468802 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Scaling Up Caregiver Support for Autism in Public Health Care: Adoption, Implementation Pace and Sustainability of a Train-the-Trainer Model for the WHO Caregiver Skills Training in Italy / Erica SALOMONE in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2381-2400 Titre : Scaling Up Caregiver Support for Autism in Public Health Care: Adoption, Implementation Pace and Sustainability of a Train-the-Trainer Model for the WHO Caregiver Skills Training in Italy Type de document : texte imprimé Auteurs : Erica SALOMONE, Auteur ; Giulia DE LEONARDIS, Auteur ; Camilla FERRANTE, Auteur ; Francesca STARTARI, Auteur ; Letizia GILA, Auteur ; null NULL, Auteur ; Maria Luisa SCATTONI, Auteur Article en page(s) : p.2381-2400 Langues : Anglais (eng) Mots-clés : WHO caregiver skills training  train-the-trainer  cascade training  implementation science  autism  CFIR Index. décimale : PER Périodiques Résumé : Train-the-Trainer (TTT) models can scale parent-mediated interventions (PMIs) in public health care, yet evidence on large-scale implementation remains limited. This study reports the implementation of an adapted TTT model for the WHO Caregiver Skills Training (CST) within the Italian National Health Service, evaluating adoption, acceptability, feasibility and sustainability. Twenty-eight clinicians from 10 Regions undertook the four-phase TTT. A mixed-methods design combined surveys with focus groups, analyzed using the Consolidated Framework for Implementation Research (CFIR). Twenty trainees (71%) qualified as Master Trainers (MTs), and 17 of these (85%) trained facilitators; 60% of MTs achieved full fidelity within the expected timeline. Satisfaction ratings were high, whereas feasibility ratings were mid-range. Implementation inhibitors clustered in the CFIR Inner setting (available resources, leadership engagement), Outer setting (lack of formal recognition), and Process (training model’s intensity structure) domains. Accelerators included Characteristics of individuals (motivation, readiness to change), Intervention characteristics (responsiveness to families’ needs, accessibility) and Inner Setting features (integration within existing care pathways). Overall, the adapted TTT was acceptable and supported early adoption and fidelity; however, lower feasibility for select capacity-building components and multilevel barriers indicate that sustained integration will require stronger organizational support and policy endorsement. Proposed adaptations offer an adaptable framework for global efforts to expand caregiver support within public health systems.Lay Abstract Families of autistic children often benefit from programs that teach caregivers practical skills to support their child’s development. However, these programs can be hard to implement in public health systems due to a shortage of trained professionals and because interventions may not align with existing service structures. To overcome these challenges, the Italian National Institute of Health has implemented the World Health Organization’s Caregiver Skills Training (CST) program through initiatives funded by the National Autism Fund. To ensure the program could be effectively adopted within the Italian public health context, we applied a “Train-the-Trainer” model. This approach trains experienced clinicians to become “Master Trainers,” who in turn train other professionals to deliver the program to families, supporting scalability and sustainability within the system. In our study, 28 clinicians from 10 regions of Italy took part in a four-step training process. Most (20 trainees) completed the program successfully, and many (17 trainees) went on to train facilitators. Surveys and focus groups examined how well the program was taken up, how acceptable it felt, how doable it was in routine services, and what might help it last. Trainers reported high satisfaction with the program, although some faced difficulties such as limited institutional support. Factors that helped implementation included strong motivation and the program’s perceived usefulness for families. Barriers included organizational challenges and the need for formal recognition of the program. Overall, this approach looks promising for bringing CST into public services, but durable, wider use will require stronger organizational support and policy endorsement. The proposed adjustments offer a practical path to expand caregiver support and offer methods that can be transferred to public health systems in other countries. En ligne : https://dx.doi.org/10.1177/13623613261469910 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Scaling Up Caregiver Support for Autism in Public Health Care: Adoption, Implementation Pace and Sustainability of a Train-the-Trainer Model for the WHO Caregiver Skills Training in Italy [texte imprimé] / Erica SALOMONE, Auteur ; Giulia DE LEONARDIS, Auteur ; Camilla FERRANTE, Auteur ; Francesca STARTARI, Auteur ; Letizia GILA, Auteur ; null NULL, Auteur ; Maria Luisa SCATTONI, Auteur . - p.2381-2400. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2381-2400 Mots-clés : WHO caregiver skills training  train-the-trainer  cascade training  implementation science  autism  CFIR Index. décimale : PER Périodiques Résumé : Train-the-Trainer (TTT) models can scale parent-mediated interventions (PMIs) in public health care, yet evidence on large-scale implementation remains limited. This study reports the implementation of an adapted TTT model for the WHO Caregiver Skills Training (CST) within the Italian National Health Service, evaluating adoption, acceptability, feasibility and sustainability. Twenty-eight clinicians from 10 Regions undertook the four-phase TTT. A mixed-methods design combined surveys with focus groups, analyzed using the Consolidated Framework for Implementation Research (CFIR). Twenty trainees (71%) qualified as Master Trainers (MTs), and 17 of these (85%) trained facilitators; 60% of MTs achieved full fidelity within the expected timeline. Satisfaction ratings were high, whereas feasibility ratings were mid-range. Implementation inhibitors clustered in the CFIR Inner setting (available resources, leadership engagement), Outer setting (lack of formal recognition), and Process (training model’s intensity structure) domains. Accelerators included Characteristics of individuals (motivation, readiness to change), Intervention characteristics (responsiveness to families’ needs, accessibility) and Inner Setting features (integration within existing care pathways). Overall, the adapted TTT was acceptable and supported early adoption and fidelity; however, lower feasibility for select capacity-building components and multilevel barriers indicate that sustained integration will require stronger organizational support and policy endorsement. Proposed adaptations offer an adaptable framework for global efforts to expand caregiver support within public health systems.Lay Abstract Families of autistic children often benefit from programs that teach caregivers practical skills to support their child’s development. However, these programs can be hard to implement in public health systems due to a shortage of trained professionals and because interventions may not align with existing service structures. To overcome these challenges, the Italian National Institute of Health has implemented the World Health Organization’s Caregiver Skills Training (CST) program through initiatives funded by the National Autism Fund. To ensure the program could be effectively adopted within the Italian public health context, we applied a “Train-the-Trainer” model. This approach trains experienced clinicians to become “Master Trainers,” who in turn train other professionals to deliver the program to families, supporting scalability and sustainability within the system. In our study, 28 clinicians from 10 regions of Italy took part in a four-step training process. Most (20 trainees) completed the program successfully, and many (17 trainees) went on to train facilitators. Surveys and focus groups examined how well the program was taken up, how acceptable it felt, how doable it was in routine services, and what might help it last. Trainers reported high satisfaction with the program, although some faced difficulties such as limited institutional support. Factors that helped implementation included strong motivation and the program’s perceived usefulness for families. Barriers included organizational challenges and the need for formal recognition of the program. Overall, this approach looks promising for bringing CST into public services, but durable, wider use will require stronger organizational support and policy endorsement. The proposed adjustments offer a practical path to expand caregiver support and offer methods that can be transferred to public health systems in other countries. En ligne : https://dx.doi.org/10.1177/13623613261469910 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Communicating About Sexuality in Autism: Experiences of Primary Caregivers / Tatiane Geralda ANDRÉ in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2401-2414 Titre : Communicating About Sexuality in Autism: Experiences of Primary Caregivers Type de document : texte imprimé Auteurs : Tatiane Geralda ANDRÉ, Auteur ; Milena DE LUCCA, Auteur ; María Dolores GIL-LLARIO, Auteur ; Lucila Castanheira NASCIMENTO, Auteur Article en page(s) : p.2401-2414 Langues : Anglais (eng) Mots-clés : sexuality communication  autism  autism spectrum disorder  caregivers experiences Index. décimale : PER Périodiques Résumé : Sexuality is a fundamental part of human development and should be addressed in its physical, emotional, and social dimensions. However, when it involves autistic children and adolescents, the topic remains marked by taboos, silence, and misinformation, especially within families. To understand the experiences of caregivers of autistic children and adolescents in Brazil and Spain regarding communication about sexuality, a qualitative narrative study was carried out based on Bronfenbrenner’s Bioecological Theory. The research was conducted in Brazil and Spain. In Brazil, participants were recruited in person and remotely; in Spain, recruitment occurred online with academic and social media support. Data were collected through in-depth interviews and field notes using a semi-structured script. Inductive thematic analysis was used to identify recurring patterns. Nineteen caregivers participated, mostly mothers. Two narrative syntheses emerged: (a) “Breaking the Silence,” showing how family silences, trauma, lack of knowledge, and autism-related challenges create emotional and cognitive barriers; and (b) “Navigating Fragilities, Improvisations, and Discoveries,” illustrating daily dilemmas, avoided topics, improvised strategies, and limited institutional support. The Bioecological Theory revealed influences from personal, relational, institutional, cultural, and temporal systems. Sexuality, though recognized as essential, remains surrounded by silence, discomfort, and educational gaps, with tensions intensified by the specificities of autism.Lay Abstract Sexuality is a natural part of growing up, and this also applies to autistic children and adolescents. However, many families still struggle with silence, taboos, and a lack of reliable information when trying to talk about these issues. This study explored how caregivers in Brazil and Spain experience conversations about sexuality with their autistic children and adolescents. Nineteen caregivers, mostly mothers, participated in in-depth interviews in which they shared their everyday difficulties, worries, and learning processes. The findings revealed two main storylines. The first, “Breaking the Silence,” shows how family taboos, past traumas, limited knowledge, and autism-related difficulties create emotional and practical barriers to communication. The second, “Navigating Fragilities, Improvisations, and Discoveries,” illustrates how caregivers often face unexpected situations, avoid sensitive topics, improvise strategies, and receive little support from institutions such as schools and health services. Using Bronfenbrenner’s Bioecological Theory, the study shows that communication about sexuality is shaped by multiple layers: personal beliefs and emotions, family relationships, institutional guidance, cultural norms, and changes over time. Overall, families recognize the importance of discussing sexuality, but the topic remains surrounded by discomfort and educational gaps, difficulties that become even more complex in the context of autism. En ligne : https://dx.doi.org/10.1177/13623613261470850 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Communicating About Sexuality in Autism: Experiences of Primary Caregivers [texte imprimé] / Tatiane Geralda ANDRÉ, Auteur ; Milena DE LUCCA, Auteur ; María Dolores GIL-LLARIO, Auteur ; Lucila Castanheira NASCIMENTO, Auteur . - p.2401-2414. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2401-2414 Mots-clés : sexuality communication  autism  autism spectrum disorder  caregivers experiences Index. décimale : PER Périodiques Résumé : Sexuality is a fundamental part of human development and should be addressed in its physical, emotional, and social dimensions. However, when it involves autistic children and adolescents, the topic remains marked by taboos, silence, and misinformation, especially within families. To understand the experiences of caregivers of autistic children and adolescents in Brazil and Spain regarding communication about sexuality, a qualitative narrative study was carried out based on Bronfenbrenner’s Bioecological Theory. The research was conducted in Brazil and Spain. In Brazil, participants were recruited in person and remotely; in Spain, recruitment occurred online with academic and social media support. Data were collected through in-depth interviews and field notes using a semi-structured script. Inductive thematic analysis was used to identify recurring patterns. Nineteen caregivers participated, mostly mothers. Two narrative syntheses emerged: (a) “Breaking the Silence,” showing how family silences, trauma, lack of knowledge, and autism-related challenges create emotional and cognitive barriers; and (b) “Navigating Fragilities, Improvisations, and Discoveries,” illustrating daily dilemmas, avoided topics, improvised strategies, and limited institutional support. The Bioecological Theory revealed influences from personal, relational, institutional, cultural, and temporal systems. Sexuality, though recognized as essential, remains surrounded by silence, discomfort, and educational gaps, with tensions intensified by the specificities of autism.Lay Abstract Sexuality is a natural part of growing up, and this also applies to autistic children and adolescents. However, many families still struggle with silence, taboos, and a lack of reliable information when trying to talk about these issues. This study explored how caregivers in Brazil and Spain experience conversations about sexuality with their autistic children and adolescents. Nineteen caregivers, mostly mothers, participated in in-depth interviews in which they shared their everyday difficulties, worries, and learning processes. The findings revealed two main storylines. The first, “Breaking the Silence,” shows how family taboos, past traumas, limited knowledge, and autism-related difficulties create emotional and practical barriers to communication. The second, “Navigating Fragilities, Improvisations, and Discoveries,” illustrates how caregivers often face unexpected situations, avoid sensitive topics, improvise strategies, and receive little support from institutions such as schools and health services. Using Bronfenbrenner’s Bioecological Theory, the study shows that communication about sexuality is shaped by multiple layers: personal beliefs and emotions, family relationships, institutional guidance, cultural norms, and changes over time. Overall, families recognize the importance of discussing sexuality, but the topic remains surrounded by discomfort and educational gaps, difficulties that become even more complex in the context of autism. En ligne : https://dx.doi.org/10.1177/13623613261470850 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Navigating Mixed-Neurotype Dialogue: Environmental and Affective Influences on Autistic Speakers / Zachary A. MILLER in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2415-2426 Titre : Navigating Mixed-Neurotype Dialogue: Environmental and Affective Influences on Autistic Speakers Type de document : texte imprimé Auteurs : Zachary A. MILLER, Auteur ; Caitlin M. CONNER, Auteur ; Judy C. CHANG, Auteur ; Carla A. MAZEFSKY, Auteur Article en page(s) : p.2415-2426 Langues : Anglais (eng) Mots-clés : autism  double empathy theory  mixed-neurotype communication  emotions  online survey Index. décimale : PER Périodiques Résumé : In this reflective report study, we examined communication challenges for autistic adults by examining the influences of emotional state and environmental context across neurotype conversation partners. Using the Neurotype Communication and Assistive Technology Survey (NCATS), we surveyed 165 autistic adults (18–35 years old) and analyzed 154 responses to capture both quantitative ratings and qualitative descriptions of past contextual conversations. The majority of the participants noted that environmental factors, such as crowdedness, noise levels, and familiarity, at least somewhat impacted their communication. Autistic adults reported that noisy or unpredictable settings were associated with word loss, scripting, and social withdrawal, while quiet and familiar spaces facilitated openness and authentic self-expression. In addition, participants stated that conversations with allistic (non-autistic) partners required more conscious effort, social masking, and cognitive load than conversations with autistic partners, consistent with the Double Empathy Problem. Finally, survey responses revealed that negative emotions such as stress, frustration, and anxiety may worsen communication difficulties regardless of the conversation partner’s neurotype, whereas positive emotions such as happiness and calmness were found to improve fluency, confidence, and intersubjectivity. These results indicate that partner neurotype, emotional states, and other environmental factors can affect communication challenges for autistic adults.Lay Abstract In this study, autistic adults reflected on their conversational experiences and described what helped communication go well and what made it more difficult. We asked 165 autistic adults (18–35 years old) to complete a survey about how they communicate in different situations based on people and places and received 154 responses. We focused on how communication changed whether the other person is autistic or allistic (non-autistic). Within that, we focused on two main factors: the type of environment they were in (e.g., home, work, school) and how their emotions (feeling happy, sad, angry) affected their communication. The majority of autistic adults said that the place they were in at least somewhat affected their communication. Autistic adults said that loud or unpredictable places often made communication harder, leading to things like losing words, repeating scripts, or pulling back from the conversation. Quiet and familiar spaces, on the contrary, made it easier to share thoughts openly. Talking with allistic people usually took more effort and sometimes led to masking, or hiding one’s natural way of communicating. This fits with the Double Empathy Problem, which says that communication struggles often come from mismatched understandings between autistic and allistic people. Emotions were also important. Stress, anxiety, or frustration made conversations harder, while happiness and calmness made conversing easier and improved confidence. Overall, our findings suggest that reducing sensory stress, supporting emotional well-being, and encouraging mutual understanding can make conversations better for both autistic and allistic people. En ligne : https://dx.doi.org/10.1177/13623613261469909 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Navigating Mixed-Neurotype Dialogue: Environmental and Affective Influences on Autistic Speakers [texte imprimé] / Zachary A. MILLER, Auteur ; Caitlin M. CONNER, Auteur ; Judy C. CHANG, Auteur ; Carla A. MAZEFSKY, Auteur . - p.2415-2426. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2415-2426 Mots-clés : autism  double empathy theory  mixed-neurotype communication  emotions  online survey Index. décimale : PER Périodiques Résumé : In this reflective report study, we examined communication challenges for autistic adults by examining the influences of emotional state and environmental context across neurotype conversation partners. Using the Neurotype Communication and Assistive Technology Survey (NCATS), we surveyed 165 autistic adults (18–35 years old) and analyzed 154 responses to capture both quantitative ratings and qualitative descriptions of past contextual conversations. The majority of the participants noted that environmental factors, such as crowdedness, noise levels, and familiarity, at least somewhat impacted their communication. Autistic adults reported that noisy or unpredictable settings were associated with word loss, scripting, and social withdrawal, while quiet and familiar spaces facilitated openness and authentic self-expression. In addition, participants stated that conversations with allistic (non-autistic) partners required more conscious effort, social masking, and cognitive load than conversations with autistic partners, consistent with the Double Empathy Problem. Finally, survey responses revealed that negative emotions such as stress, frustration, and anxiety may worsen communication difficulties regardless of the conversation partner’s neurotype, whereas positive emotions such as happiness and calmness were found to improve fluency, confidence, and intersubjectivity. These results indicate that partner neurotype, emotional states, and other environmental factors can affect communication challenges for autistic adults.Lay Abstract In this study, autistic adults reflected on their conversational experiences and described what helped communication go well and what made it more difficult. We asked 165 autistic adults (18–35 years old) to complete a survey about how they communicate in different situations based on people and places and received 154 responses. We focused on how communication changed whether the other person is autistic or allistic (non-autistic). Within that, we focused on two main factors: the type of environment they were in (e.g., home, work, school) and how their emotions (feeling happy, sad, angry) affected their communication. The majority of autistic adults said that the place they were in at least somewhat affected their communication. Autistic adults said that loud or unpredictable places often made communication harder, leading to things like losing words, repeating scripts, or pulling back from the conversation. Quiet and familiar spaces, on the contrary, made it easier to share thoughts openly. Talking with allistic people usually took more effort and sometimes led to masking, or hiding one’s natural way of communicating. This fits with the Double Empathy Problem, which says that communication struggles often come from mismatched understandings between autistic and allistic people. Emotions were also important. Stress, anxiety, or frustration made conversations harder, while happiness and calmness made conversing easier and improved confidence. Overall, our findings suggest that reducing sensory stress, supporting emotional well-being, and encouraging mutual understanding can make conversations better for both autistic and allistic people. En ligne : https://dx.doi.org/10.1177/13623613261469909 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Limited Sensitivity and Specificity of the Spanish Social Communication Questionnaire in a Clinic Sample in Quito, Ecuador / Jonathan SAFER-LICHTENSTEIN in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2427-2431 Titre : Limited Sensitivity and Specificity of the Spanish Social Communication Questionnaire in a Clinic Sample in Quito, Ecuador Type de document : texte imprimé Auteurs : Jonathan SAFER-LICHTENSTEIN, Auteur ; Jenniffer VILLARREAL, Auteur ; Lucas FERNANDEZ, Auteur ; Mary TROXEL, Auteur Article en page(s) : p.2427-2431 Langues : Anglais (eng) Mots-clés : autism  Latin America  cross-cultural studies  global context  screening Index. décimale : PER Périodiques Résumé : Accurate identification of autism is critical for timely intervention, yet validated screening tools remain limited in Latin America. This study evaluated the psychometric properties of the Spanish-translated Social Communication Questionnaire (SCQ) in a clinic-based sample of children in Quito, Ecuador. Caregivers of 94 children aged 4-18 years completed the SCQ Lifetime form as part of a diagnostic evaluation that included cognitive testing, developmental history, and the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2). Internal consistency of the SCQ was good (Cronbach’s α = .843). However, the SCQ showed poor diagnostic accuracy, with an area under the receiver operating characteristic curve (AUC) of .60. At the conventional SCQ cut score of 15, sensitivity and specificity were .56 and .60, respectively; using a lower cut score of 11 increased sensitivity (.72) but decreased specificity (.43). These findings indicate limited utility of the SCQ as a screening instrument for autism in this clinical context. Results align with other studies showing variability in SCQ performance across diverse populations and settings, highlighting the need for locally validated screening tools.Lay Abstract Early and accurate identification of autism helps children and families access helpful supports, yet most screening tools have been developed and tested mainly in English-speaking countries, and we know less about how well they work in Latin America. In this study, we examined how well a Spanish translation of the widely used Social Communication Questionnaire (SCQ) identified autism in a clinic in Quito, Ecuador. Caregivers completed the questionnaire as part of a full clinical evaluation by trained professionals. We found that the SCQ was not very accurate at distinguishing which children did or did not have autism in this setting, meaning it may not be reliable on its own for screening. These results suggest that screening tools should be carefully tested with local communities before widespread use and highlight the need for tools that better reflect the languages, cultures, and experiences of families. En ligne : https://dx.doi.org/10.1177/13623613261452239 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Limited Sensitivity and Specificity of the Spanish Social Communication Questionnaire in a Clinic Sample in Quito, Ecuador [texte imprimé] / Jonathan SAFER-LICHTENSTEIN, Auteur ; Jenniffer VILLARREAL, Auteur ; Lucas FERNANDEZ, Auteur ; Mary TROXEL, Auteur . - p.2427-2431. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2427-2431 Mots-clés : autism  Latin America  cross-cultural studies  global context  screening Index. décimale : PER Périodiques Résumé : Accurate identification of autism is critical for timely intervention, yet validated screening tools remain limited in Latin America. This study evaluated the psychometric properties of the Spanish-translated Social Communication Questionnaire (SCQ) in a clinic-based sample of children in Quito, Ecuador. Caregivers of 94 children aged 4-18 years completed the SCQ Lifetime form as part of a diagnostic evaluation that included cognitive testing, developmental history, and the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2). Internal consistency of the SCQ was good (Cronbach’s α = .843). However, the SCQ showed poor diagnostic accuracy, with an area under the receiver operating characteristic curve (AUC) of .60. At the conventional SCQ cut score of 15, sensitivity and specificity were .56 and .60, respectively; using a lower cut score of 11 increased sensitivity (.72) but decreased specificity (.43). These findings indicate limited utility of the SCQ as a screening instrument for autism in this clinical context. Results align with other studies showing variability in SCQ performance across diverse populations and settings, highlighting the need for locally validated screening tools.Lay Abstract Early and accurate identification of autism helps children and families access helpful supports, yet most screening tools have been developed and tested mainly in English-speaking countries, and we know less about how well they work in Latin America. In this study, we examined how well a Spanish translation of the widely used Social Communication Questionnaire (SCQ) identified autism in a clinic in Quito, Ecuador. Caregivers completed the questionnaire as part of a full clinical evaluation by trained professionals. We found that the SCQ was not very accurate at distinguishing which children did or did not have autism in this setting, meaning it may not be reliable on its own for screening. These results suggest that screening tools should be carefully tested with local communities before widespread use and highlight the need for tools that better reflect the languages, cultures, and experiences of families. En ligne : https://dx.doi.org/10.1177/13623613261452239 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Beyond Direct Costs: Expanding the Conceptualization of Caregiver Burden in Autism / Brianna BURTE in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2432-2433 Titre : Beyond Direct Costs: Expanding the Conceptualization of Caregiver Burden in Autism Type de document : texte imprimé Auteurs : Brianna BURTE, Auteur ; Samuel TRINGALI, Auteur Article en page(s) : p.2432-2433 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613261466589 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Beyond Direct Costs: Expanding the Conceptualization of Caregiver Burden in Autism [texte imprimé] / Brianna BURTE, Auteur ; Samuel TRINGALI, Auteur . - p.2432-2433. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2432-2433 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613261466589 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592