Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations / Anne M. ROUX in Autism Research, 16-3 (March 2023)  

Public ISBD [article]  inAutism Research > 16-3 (March 2023) . - p.480-496 Titre : Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations Type de document : Texte imprimé et/ou numérique Auteurs : Anne M. ROUX, Auteur ; Lindsay L. SHEA, Auteur ; Hillary STEINBERG, Auteur ; Jessica E. RAST, Auteur ; Kristy A. ANDERSON, Auteur ; Emily HOTEZ, Auteur ; Kashia ROSENAU, Auteur ; Alice KUO, Auteur ; Evva ASSING-MURRAY, Auteur ; Paul T. SHATTUCK, Auteur Article en page(s) : p.480-496 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants. En ligne : https://doi.org/10.1002/aur.2890 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498 [article] Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations [Texte imprimé et/ou numérique] / Anne M. ROUX, Auteur ; Lindsay L. SHEA, Auteur ; Hillary STEINBERG, Auteur ; Jessica E. RAST, Auteur ; Kristy A. ANDERSON, Auteur ; Emily HOTEZ, Auteur ; Kashia ROSENAU, Auteur ; Alice KUO, Auteur ; Evva ASSING-MURRAY, Auteur ; Paul T. SHATTUCK, Auteur . - p.480-496. Langues : Anglais (eng) in Autism Research > 16-3 (March 2023) . - p.480-496 Index. décimale : PER Périodiques Résumé : Abstract Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants. En ligne : https://doi.org/10.1002/aur.2890 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498

Inextricably tied: Nonbinary autistic individuals' views on how their gender identity and autism are connected / Hillary STEINBERG ; Tamara GARFIELD ; Kyle CHVASTA ; Katherine ARDELEANU ; Maci BROWN ; Lindsay SHEA in Autism, 28-12 (December 2024)  

Public ISBD [article]  inAutism > 28-12 (December 2024) . - p.3156-3166 Titre : Inextricably tied: Nonbinary autistic individuals' views on how their gender identity and autism are connected Type de document : Texte imprimé et/ou numérique Auteurs : Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Kyle CHVASTA, Auteur ; Katherine ARDELEANU, Auteur ; Maci BROWN, Auteur ; Lindsay SHEA, Auteur Article en page(s) : p.3156-3166 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  LGBT  qualitative research  transgender Index. décimale : PER Périodiques Résumé : This study explores the experiences and identities of nonbinary autistic people, an under-researched population. While past studies have posited a co-occurrence of autism and transgender identity, little research focuses specifically on nonbinary autistic adults. This community-based study draws on interview data from 44 nonbinary participants. Participants expressed nuanced and informed understandings of their gender identities, highlighting fluidity and a rejection traditional binary gender roles. Participants discussed the connection of their autistic and nonbinary identities and how their identity is shaped by external forces such as politics, community, and interpersonal relationships. Findings highlight the need for the inclusion of nonbinary autistic people in autism research and for autism services and programming to be affirming of various gender identities. Lay abstract This study explores the experiences and identities of nonbinary autistic people. The relationship between autistic and nonbinary identities has not been researched in detail. Few studies focus specifically on nonbinary autistic adults. We interviewed 44 nonbinary individuals for this study. Participants had thought-out opinions on gender identity and emphasized identifying with fluidity rather than traditional gender roles. Participants discussed the connection of their autistic and nonbinary identities and how it affected how people saw them and how they saw themselves. We have recommendations for programming, policy, and research from these findings. En ligne : https://dx.doi.org/10.1177/13623613241257600 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=543 [article] Inextricably tied: Nonbinary autistic individuals' views on how their gender identity and autism are connected [Texte imprimé et/ou numérique] / Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Kyle CHVASTA, Auteur ; Katherine ARDELEANU, Auteur ; Maci BROWN, Auteur ; Lindsay SHEA, Auteur . - p.3156-3166. Langues : Anglais (eng) in Autism > 28-12 (December 2024) . - p.3156-3166 Mots-clés : adults  autism spectrum disorders  LGBT  qualitative research  transgender Index. décimale : PER Périodiques Résumé : This study explores the experiences and identities of nonbinary autistic people, an under-researched population. While past studies have posited a co-occurrence of autism and transgender identity, little research focuses specifically on nonbinary autistic adults. This community-based study draws on interview data from 44 nonbinary participants. Participants expressed nuanced and informed understandings of their gender identities, highlighting fluidity and a rejection traditional binary gender roles. Participants discussed the connection of their autistic and nonbinary identities and how their identity is shaped by external forces such as politics, community, and interpersonal relationships. Findings highlight the need for the inclusion of nonbinary autistic people in autism research and for autism services and programming to be affirming of various gender identities. Lay abstract This study explores the experiences and identities of nonbinary autistic people. The relationship between autistic and nonbinary identities has not been researched in detail. Few studies focus specifically on nonbinary autistic adults. We interviewed 44 nonbinary individuals for this study. Participants had thought-out opinions on gender identity and emphasized identifying with fluidity rather than traditional gender roles. Participants discussed the connection of their autistic and nonbinary identities and how it affected how people saw them and how they saw themselves. We have recommendations for programming, policy, and research from these findings. En ligne : https://dx.doi.org/10.1177/13623613241257600 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=543

Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion / Katherine ARDELEANU in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2344-2355 Titre : Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion Type de document : Texte imprimé et/ou numérique Auteurs : Katherine ARDELEANU, Auteur ; Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Samuelle VOLTAIRE, Auteur ; Lindsay SHEA, Auteur ; Maci BROWN, Auteur ; Kyle CHVASTA, Auteur ; Catherine Do TAN, Auteur Article en page(s) : p.2344-2355 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  diagnosis  policy  qualitative research  queer  transgender Index. décimale : PER Périodiques Résumé : Autism research and services have historically focused on individuals with a formal autism diagnosis. However, activists and self-advocates in the United States recognize that there are financial and clinical barriers impeding access to formal diagnostic evaluations for autism. Research also suggests that groups on the margins of autism, specifically those who are not White, young, or assigned male at birth, receive later diagnoses, if diagnosed at all. In particular, individuals who are autistic and LGTBQ+ are likely to not be afforded opportunities to be assessed and diagnosed. We conducted interviews with 65 queer and transgender autistic adults who either self-identified as autistic or had a formal autism diagnosis about their experiences with and perceptions of autism diagnosis. We found that participants derived a sense of meaning and affirmation from their autistic diagnosis and/or identity, faced significant barriers and deterrents to diagnosis, and experienced invalidation as both a barrier to and product of diagnosis. We argue that self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people. We offer recommendations for research and services, specifically that many should not require formal autism diagnoses of participants.Lay abstract Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services. En ligne : https://dx.doi.org/10.1177/13623613241297222 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion [Texte imprimé et/ou numérique] / Katherine ARDELEANU, Auteur ; Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Samuelle VOLTAIRE, Auteur ; Lindsay SHEA, Auteur ; Maci BROWN, Auteur ; Kyle CHVASTA, Auteur ; Catherine Do TAN, Auteur . - p.2344-2355. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2344-2355 Mots-clés : adults  autism spectrum disorders  diagnosis  policy  qualitative research  queer  transgender Index. décimale : PER Périodiques Résumé : Autism research and services have historically focused on individuals with a formal autism diagnosis. However, activists and self-advocates in the United States recognize that there are financial and clinical barriers impeding access to formal diagnostic evaluations for autism. Research also suggests that groups on the margins of autism, specifically those who are not White, young, or assigned male at birth, receive later diagnoses, if diagnosed at all. In particular, individuals who are autistic and LGTBQ+ are likely to not be afforded opportunities to be assessed and diagnosed. We conducted interviews with 65 queer and transgender autistic adults who either self-identified as autistic or had a formal autism diagnosis about their experiences with and perceptions of autism diagnosis. We found that participants derived a sense of meaning and affirmation from their autistic diagnosis and/or identity, faced significant barriers and deterrents to diagnosis, and experienced invalidation as both a barrier to and product of diagnosis. We argue that self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people. We offer recommendations for research and services, specifically that many should not require formal autism diagnoses of participants.Lay abstract Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services. En ligne : https://dx.doi.org/10.1177/13623613241297222 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

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