“Autism Diagnosis as a Guide”: Taiwanese Adolescents’ Own Experiences of Receiving Autism Diagnoses / Chun-Hao LIU in Autism, 30-7 (July 2026)  

Public ISBD [article]  inAutism > 30-7 (July 2026) . - p.1775-1789 Titre : “Autism Diagnosis as a Guide”: Taiwanese Adolescents’ Own Experiences of Receiving Autism Diagnoses Type de document : texte imprimé Auteurs : Chun-Hao LIU, Auteur ; Wei-Cheng LIN, Auteur ; Louisa Lok Yee MAN, Auteur ; Chih-Ju WU, Auteur ; Romin W. TAFARODI, Auteur ; Lin FANG, Auteur ; Melanie PENNER, Auteur ; Hsing-Chang NI, Auteur ; Meng-Chuan LAI, Auteur Article en page(s) : p.1775-1789 Langues : Anglais (eng) Mots-clés : adolescent  autism  culture  diagnosis  lived experience  Taiwan Index. décimale : PER Périodiques Résumé : Receiving an autism diagnosis can significantly contribute to adolescent identity formation via different processes, such as coping with stigmatization and/or reframing the diagnosis as a foundation for self-understanding and self-acceptance. Despite the presumed importance of cultural context in this regard, little is known about how autistic adolescents experience their autism diagnoses in non-Western countries. We aimed to understand the experiences of Taiwanese autistic adolescents receiving autism diagnoses in a relationship-oriented, non-Western culture. Eight autistic adolescents aged 14–18 years (three assigned-male, five assigned-female) participated in in-depth individual interviews, with data analyzed by reflexive thematic analysis. These Taiwanese autistic adolescents used their autism diagnoses to gain self-understanding and guide social interactions, specifically, (a) to explain past experiences in relation to both positive and negative stereotypes about autism; (b) as a guide to autism knowledge and to provide a framework for modifying one’s own behaviors; (c) to seek connections with autistic peers and to be understood by non-autistic people; and (d) to negotiate with the Taiwanese educational system in meeting their needs. This study offers a qualitative, in-depth perspective on how autistic adolescents in a relationship-oriented, non-Western society experience and navigate their autism diagnoses—as a resource for identity construction and social position.Lay Abstract Receiving an autism diagnosis can come with different emotional and cognitive responses, such as feeling stigmatized and/or reframing this experience as a foundation for self-understanding and self-acceptance. This process is especially impactful during the teenage years, when young people typically begin to actively explore who they are. Because most previous research has been conducted in Western countries, we know very little about the experiences receiving an autism diagnosis in non-Western, relationship-oriented cultures, where fitting in with the group is often valued more than standing out. In this study, we interviewed eight autistic adolescents in Taiwan, aged 14–18 years, to understand how they experienced their autism diagnoses. We found that these Taiwanese autistic adolescents used their diagnoses to better understand themselves and guide their interactions with other people. Some used it to explain their past experiences and relieve themselves of guilt. Some said it helped them understand more about their own behavioral tendency and adjust their behavior accordingly. The diagnosis also helped them connect with their autistic peers, communicate effectively with non-autistic people, and ask for support within the school system. This study highlights the voices of Taiwanese autistic teenagers about their experiences of receiving an autism diagnosis. It shows how autism diagnoses can promote self-understanding and social coping. En ligne : https://dx.doi.org/10.1177/13623613261444800 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590 [article] “Autism Diagnosis as a Guide”: Taiwanese Adolescents’ Own Experiences of Receiving Autism Diagnoses [texte imprimé] / Chun-Hao LIU, Auteur ; Wei-Cheng LIN, Auteur ; Louisa Lok Yee MAN, Auteur ; Chih-Ju WU, Auteur ; Romin W. TAFARODI, Auteur ; Lin FANG, Auteur ; Melanie PENNER, Auteur ; Hsing-Chang NI, Auteur ; Meng-Chuan LAI, Auteur . - p.1775-1789. Langues : Anglais (eng) in Autism > 30-7 (July 2026) . - p.1775-1789 Mots-clés : adolescent  autism  culture  diagnosis  lived experience  Taiwan Index. décimale : PER Périodiques Résumé : Receiving an autism diagnosis can significantly contribute to adolescent identity formation via different processes, such as coping with stigmatization and/or reframing the diagnosis as a foundation for self-understanding and self-acceptance. Despite the presumed importance of cultural context in this regard, little is known about how autistic adolescents experience their autism diagnoses in non-Western countries. We aimed to understand the experiences of Taiwanese autistic adolescents receiving autism diagnoses in a relationship-oriented, non-Western culture. Eight autistic adolescents aged 14–18 years (three assigned-male, five assigned-female) participated in in-depth individual interviews, with data analyzed by reflexive thematic analysis. These Taiwanese autistic adolescents used their autism diagnoses to gain self-understanding and guide social interactions, specifically, (a) to explain past experiences in relation to both positive and negative stereotypes about autism; (b) as a guide to autism knowledge and to provide a framework for modifying one’s own behaviors; (c) to seek connections with autistic peers and to be understood by non-autistic people; and (d) to negotiate with the Taiwanese educational system in meeting their needs. This study offers a qualitative, in-depth perspective on how autistic adolescents in a relationship-oriented, non-Western society experience and navigate their autism diagnoses—as a resource for identity construction and social position.Lay Abstract Receiving an autism diagnosis can come with different emotional and cognitive responses, such as feeling stigmatized and/or reframing this experience as a foundation for self-understanding and self-acceptance. This process is especially impactful during the teenage years, when young people typically begin to actively explore who they are. Because most previous research has been conducted in Western countries, we know very little about the experiences receiving an autism diagnosis in non-Western, relationship-oriented cultures, where fitting in with the group is often valued more than standing out. In this study, we interviewed eight autistic adolescents in Taiwan, aged 14–18 years, to understand how they experienced their autism diagnoses. We found that these Taiwanese autistic adolescents used their diagnoses to better understand themselves and guide their interactions with other people. Some used it to explain their past experiences and relieve themselves of guilt. Some said it helped them understand more about their own behavioral tendency and adjust their behavior accordingly. The diagnosis also helped them connect with their autistic peers, communicate effectively with non-autistic people, and ask for support within the school system. This study highlights the voices of Taiwanese autistic teenagers about their experiences of receiving an autism diagnosis. It shows how autism diagnoses can promote self-understanding and social coping. En ligne : https://dx.doi.org/10.1177/13623613261444800 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590

Community Provider Perspectives on an Autism Learning Health Network: A Qualitative Study / Josie KEARNEY in Journal of Autism and Developmental Disorders, 56-4 (April 2026)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 56-4 (April 2026) . - p.1408-1417 Titre : Community Provider Perspectives on an Autism Learning Health Network: A Qualitative Study Type de document : texte imprimé Auteurs : Josie KEARNEY, Auteur ; Catherine BOSYJ, Auteur ; Victoria ROMBOS, Auteur ; Alicia Brewer CURRAN, Auteur ; Brenda CLARK, Auteur ; Wendy CORNELL, Auteur ; Shannon MAH, Auteur ; Melissa MAHURIN, Auteur ; Nicholas PIRODDI, Auteur ; Kristin SOHL, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Melanie PENNER, Auteur Article en page(s) : p.1408-1417 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Although autism is highly prevalent, no single care center has enough patients to produce generalizable knowledge of optimal care; this slows the pace of quality improvement research. The Autism Care Network (ACNet) is a learning health network (LHN) dedicated to developing the most effective approach to care for autistic children and adolescents through integrating clinical and research data. Given that most autistic patients receive care in the community, expanding ACNet to include community providers is essential to improve autism care. Our objectives were to: (1) understand the current data collection practices, learning needs, capacity, and overall interest of community clinicians in participating in an autism LHN; (2) identify their perspectives on participating in a LHN and ways in which their engagement and interest can be cultivated. Participants were purposively sampled from community physicians who participated in ASD-focused educational programming. In-depth semi-structured interviews were conducted. Analysis of 29 participant interviews yielded five primary themes: Navigating Administrative Challenges, Improving Data Collection Practices, Increasing Provider Confidence and Competence, Breaking Down Silos, and System and Societal Barriers to Achieving Best Practices. This study provides a rich and nuanced understanding of the experiences of community providers regarding the challenges of ASD care provision in the community. Overall, these findings suggest that LHNs have the potential to address several of the issues in community autism care highlighted by community providers. En ligne : https://doi.org/10.1007/s10803-024-06597-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=582 [article] Community Provider Perspectives on an Autism Learning Health Network: A Qualitative Study [texte imprimé] / Josie KEARNEY, Auteur ; Catherine BOSYJ, Auteur ; Victoria ROMBOS, Auteur ; Alicia Brewer CURRAN, Auteur ; Brenda CLARK, Auteur ; Wendy CORNELL, Auteur ; Shannon MAH, Auteur ; Melissa MAHURIN, Auteur ; Nicholas PIRODDI, Auteur ; Kristin SOHL, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Melanie PENNER, Auteur . - p.1408-1417. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 56-4 (April 2026) . - p.1408-1417 Index. décimale : PER Périodiques Résumé : Although autism is highly prevalent, no single care center has enough patients to produce generalizable knowledge of optimal care; this slows the pace of quality improvement research. The Autism Care Network (ACNet) is a learning health network (LHN) dedicated to developing the most effective approach to care for autistic children and adolescents through integrating clinical and research data. Given that most autistic patients receive care in the community, expanding ACNet to include community providers is essential to improve autism care. Our objectives were to: (1) understand the current data collection practices, learning needs, capacity, and overall interest of community clinicians in participating in an autism LHN; (2) identify their perspectives on participating in a LHN and ways in which their engagement and interest can be cultivated. Participants were purposively sampled from community physicians who participated in ASD-focused educational programming. In-depth semi-structured interviews were conducted. Analysis of 29 participant interviews yielded five primary themes: Navigating Administrative Challenges, Improving Data Collection Practices, Increasing Provider Confidence and Competence, Breaking Down Silos, and System and Societal Barriers to Achieving Best Practices. This study provides a rich and nuanced understanding of the experiences of community providers regarding the challenges of ASD care provision in the community. Overall, these findings suggest that LHNs have the potential to address several of the issues in community autism care highlighted by community providers. En ligne : https://doi.org/10.1007/s10803-024-06597-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=582

Correction: Community Provider Perspectives on an Autism Learning Health Network: A Qualitative Study / Josie KEARNEY in Journal of Autism and Developmental Disorders, 55-3 (March 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-3 (March 2025) . - p.1156-1156 Titre : Correction: Community Provider Perspectives on an Autism Learning Health Network: A Qualitative Study Type de document : texte imprimé Auteurs : Josie KEARNEY, Auteur ; Catherine BOSYJ, Auteur ; Victoria ROMBOS, Auteur ; Alicia Brewer CURRAN, Auteur ; Brenda G. CLARK, Auteur ; Wendy CORNELL, Auteur ; Shannon MAH, Auteur ; Melissa MAHURIN, Auteur ; Nicholas PIRODDI, Auteur ; Kristin SOHL, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Melanie PENNER, Auteur Article en page(s) : p.1156-1156 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://doi.org/10.1007/s10803-024-06646-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=549 [article] Correction: Community Provider Perspectives on an Autism Learning Health Network: A Qualitative Study [texte imprimé] / Josie KEARNEY, Auteur ; Catherine BOSYJ, Auteur ; Victoria ROMBOS, Auteur ; Alicia Brewer CURRAN, Auteur ; Brenda G. CLARK, Auteur ; Wendy CORNELL, Auteur ; Shannon MAH, Auteur ; Melissa MAHURIN, Auteur ; Nicholas PIRODDI, Auteur ; Kristin SOHL, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Melanie PENNER, Auteur . - p.1156-1156. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-3 (March 2025) . - p.1156-1156 Index. décimale : PER Périodiques En ligne : https://doi.org/10.1007/s10803-024-06646-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=549

Cost-Effectiveness Analysis Comparing Pre-diagnosis Autism Spectrum Disorder (ASD)-Targeted Intervention with Ontario’s Autism Intervention Program / Melanie PENNER in Journal of Autism and Developmental Disorders, 45-9 (September 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-9 (September 2015) . - p.2833-2847 Titre : Cost-Effectiveness Analysis Comparing Pre-diagnosis Autism Spectrum Disorder (ASD)-Targeted Intervention with Ontario’s Autism Intervention Program Type de document : texte imprimé Auteurs : Melanie PENNER, Auteur ; Meera RAYAR, Auteur ; Naazish BASHIR, Auteur ; S. Wendy ROBERTS, Auteur ; Rebecca L. HANCOCK-HOWARD, Auteur ; Peter C. COYTE, Auteur Article en page(s) : p.2833-2847 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Cost-effectiveness  Behavior therapy  Independent living  Economics Index. décimale : PER Périodiques Résumé : Novel management strategies for autism spectrum disorder (ASD) propose providing interventions before diagnosis. We performed a cost-effectiveness analysis comparing the costs and dependency-free life years (DFLYs) generated by pre-diagnosis intensive Early Start Denver Model (ESDM-I); pre-diagnosis parent-delivered ESDM (ESDM-PD); and the Ontario Status Quo (SQ). The analyses took government and societal perspectives to age 65. We assigned probabilities of Independent, Semi-dependent or Dependent living based on projected IQ. Costs per person (in Canadian dollars) were ascribed to each living setting. From a government perspective, the ESDM-PD produced an additional 0.17 DFLYs for $8600 less than SQ. From a societal perspective, the ESDM-I produced an additional 0.53 DFLYs for $45,000 less than SQ. Pre-diagnosis interventions targeting ASD symptoms warrant further investigation. En ligne : http://dx.doi.org/10.1007/s10803-015-2447-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=267 [article] Cost-Effectiveness Analysis Comparing Pre-diagnosis Autism Spectrum Disorder (ASD)-Targeted Intervention with Ontario’s Autism Intervention Program [texte imprimé] / Melanie PENNER, Auteur ; Meera RAYAR, Auteur ; Naazish BASHIR, Auteur ; S. Wendy ROBERTS, Auteur ; Rebecca L. HANCOCK-HOWARD, Auteur ; Peter C. COYTE, Auteur . - p.2833-2847. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-9 (September 2015) . - p.2833-2847 Mots-clés : Autism spectrum disorder  Cost-effectiveness  Behavior therapy  Independent living  Economics Index. décimale : PER Périodiques Résumé : Novel management strategies for autism spectrum disorder (ASD) propose providing interventions before diagnosis. We performed a cost-effectiveness analysis comparing the costs and dependency-free life years (DFLYs) generated by pre-diagnosis intensive Early Start Denver Model (ESDM-I); pre-diagnosis parent-delivered ESDM (ESDM-PD); and the Ontario Status Quo (SQ). The analyses took government and societal perspectives to age 65. We assigned probabilities of Independent, Semi-dependent or Dependent living based on projected IQ. Costs per person (in Canadian dollars) were ascribed to each living setting. From a government perspective, the ESDM-PD produced an additional 0.17 DFLYs for $8600 less than SQ. From a societal perspective, the ESDM-I produced an additional 0.53 DFLYs for $45,000 less than SQ. Pre-diagnosis interventions targeting ASD symptoms warrant further investigation. En ligne : http://dx.doi.org/10.1007/s10803-015-2447-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=267

Diagnosis: screening, surveillance, assessment, and formulation / Melanie PENNER

Public ISBD in Clinician's Manual on Autism Spectrum Disorder / Evdokia ANAGNOSTOU Titre : Diagnosis: screening, surveillance, assessment, and formulation Type de document : texte imprimé Auteurs : Melanie PENNER, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Wendy ROBERTS, Auteur Année de publication : 2015 Importance : p.5-17 Langues : Anglais (eng) Index. décimale : AUT-B AUT-B - L'Autisme - Ouvrages généraux et scientifiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=271 in Clinician's Manual on Autism Spectrum Disorder / Evdokia ANAGNOSTOU Diagnosis: screening, surveillance, assessment, and formulation [texte imprimé] / Melanie PENNER, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Wendy ROBERTS, Auteur . - 2015 . - p.5-17. Langues : Anglais (eng) Index. décimale : AUT-B AUT-B - L'Autisme - Ouvrages généraux et scientifiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=271

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Enhancing access to autism diagnostic services for children in the community / Melanie PENNER in Autism, 27-8 (November 2023)  

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Personalized Lifespan Approach to Autism Assessment: A Clinical and System Framework for Developmentally Informed Assessment Across the Life-Course / Melanie PENNER in Autism Research, 19-8 (August 2026)  

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Practice patterns and determinants of wait time for autism spectrum disorder diagnosis in Canada / Melanie PENNER in Molecular Autism, 9 (2018)  

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Systematic review of clinical guidance documents for autism spectrum disorder diagnostic assessment in select regions / Melanie PENNER in Autism, 22-5 (July 2018)  

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Understanding the Use of the Term "Weaponized Autism" in An Alt-Right Social Media Platform / Christie WELCH in Journal of Autism and Developmental Disorders, 53-10 (October 2023)  

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