Le Questionnaire sur la diversité de genre et l'autisme : un outil clinique, de recherche et d'auto-revendication développé par la communauté pour les jeunes adultes autistes transgenres et de genre divers

Titre original en anglais : The Gender-Diversity and Autism Questionnaire: A Community-Developed Clinical, Research, and Self-Advocacy Tool for Autistic Transgender and Gender-Diverse Young Adults

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Strang, J. F., McClellan, L. S., Raaijmakers, D., Caplan, R., Klomp, S. E., Reutter, M., Lai, M. C., Song, M., Gratton, F., Dale, L. K., Schutte, A., Vries, A. d., Gardiner, F., Edwards-Leeper, L., Minnaard, A. L., Eleveld, N. L., corbin, e., Purkis, Y., Lawson, W.,..., & Miesen, A. I. R. v. d. (2023). The Gender-Diversity and Autism Questionnaire: A Community-Developed Clinical, Research, and Self-Advocacy Tool for Autistic Transgender and Gender-Diverse Young Adults. Autism in Adulthood, 5(2), 175-190. https://doi.org/10.1089/aut.2023.0002

Date de publication: 01/06/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
37
Auteur·ices de la publication identifié·es comme autistes
5 / 37 (13,5 %)
  1. John F. Strang
  2. Lucy S. McClellan
  3. Daphne Raaijmakers
  4. Reid Caplan *
  5. Sascha E. Klomp
  6. Mindy Reutter
  7. Meng-Chuan Lai
  8. Minneh Song
  9. F. Gratton
  10. Laura Kate Dale
  11. Anouschka Schutte
  12. A. de Vries
  13. Finn Gardiner
  1. Laura Edwards-Leeper
  2. Amélie Lune Minnaard
  3. Niki Lou Eleveld
  4. endever* corbin *
  5. Yenn (Jeanette) Purkis *
  6. Wenn Lawson *
  7. Da‐Young Kim
  8. Isa M. van Wieringen
  9. Victoria M. Rodríguez-Roldán
  10. Marvel C. Harris
  11. Madeline F. Wilks
  12. Gee Abraham
  13. Anouk Balleur-van Rijn
  1. Ly Xīnzhèn M. Zhǎngsūn Brown *
  2. Alexandra Forshaw
  3. Gary B. Wilks
  4. April Dawn Griffin
  5. Elizabeth K. Graham
  6. Sandy Krause
  7. Noor Pervez
  8. Inge A. Bok
  9. Amber Y. Song
  10. Abigail L. Fischbach
  11. Anna I. R. van der Miesen

Résumé

Contexte : Les personnes transgenres autistes sont confrontées à des risques uniques dans la société, notamment à des inégalités dans l'accès aux soins nécessaires et à des disparités connexes en matière de santé mentale. Compte tenu du besoin d'aménagements et de soutiens spécifiques et adaptés à la culture, il est impératif de caractériser les expériences, défis, besoins et facteurs de résilience clés au sein de cette population. Cette étude a élaboré un outil structuré d'auto-évaluation permettant aux jeunes adultes transgenres autistes de communiquer leurs expériences et leurs besoins dans un format de rapport adapté aux styles courants de pensée et de communication autistes. Méthodes : Ce projet multinational a élaboré et affiné le Questionnaire sur la diversité de genre et l'autisme au moyen d'une approche itérative fondée sur la communauté utilisant la méthodologie du panel Delphi. Ce projet de preuve de principe a défini l'« expertise » au sens large, en employant une approche de recherche d'experts à entrées multiples afin d'équilibrer l'expertise fondée sur le milieu universitaire, la communauté et l'expérience vécue. Résultats : Les collaborateurs experts (N = 24 répondants) ont réalisé une étude Delphi en deux tours, qui a élaboré 85 items majoritairement fermés sur la base d'un consensus de 90 %. Le contenu final des items relève de six domaines thématiques : l'expérience des identités ; l'impact de la discrimination, des préjugés et de la violence subis ou anticipés à l'égard des personnes autistes et des personnes transgenres ; les tâches et expériences de la vie quotidienne ; les besoins et les antécédents de soins liés à la diversité de genre ou à l'autisme ; l'expérience du fait que d'autres personnes mettent en doute l'identité de genre et/ou l'autisme d'un individu ; et l'expérience de la communauté et de la connexion. La majorité des items retenus concernent les tâches et expériences de la vie quotidienne ou l'impact de la discrimination, des préjugés et de la violence subis ou anticipés. Conclusions : Cette étude a employé une approche de recherche multimodale à volets multiples afin de maximiser l'équité dans la représentation de l'équipe experte chargée de l'élaboration de la mesure. L'instrument qui en résulte, conçu pour des applications cliniques, de recherche et d'auto-revendication, possède des versions parallèles en néerlandais et en anglais et est disponible pour une utilisation immédiate. De futures recherches interculturelles utilisant cet instrument pourraient aider à identifier des facteurs contextuels de risque et de résilience afin de mieux comprendre et traiter les inégalités auxquelles est confrontée cette vaste population intersectionnelle.

Background: Autistic transgender people face unique risks in society, including inequities in accessing needed care and related mental health disparities. Given the need for specific and culturally responsive accommodations/supports, the characterization of key experiences, challenges, needs, and resilience factors within this population is imperative. This study developed a structured self-report tool for autistic transgender young adults to communicate their experiences and needs in a report format attuned to common autistic thinking and communication styles. Methods: This cross-nation project developed and refined the Gender-Diversity and Autism Questionnaire through an iterative community-based approach using Delphi panel methodology. This proof-of-principle project defined “expertise” broadly, employing a multi-input expert search approach to balance academic-, community-, and lived experience-based expertise. Results: The expert collaborators ( N = 24 respondents) completed a two-round Delphi study, which developed 85 mostly closed-ended items based on 90% consensus. Final item content falls within six topic areas: the experience of identities; the impact of experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people; tasks and experiences of everyday life; gender diversity- or autism-related care needs and history; the experience of others doubting an individual's gender identity and/or autism; and the experience of community and connectedness. The majority of retained items relate to tasks and experiences of everyday life or the impact of experienced or anticipated discrimination, bias, and violence. Conclusions: This study employed a multipronged multimodal search approach to maximize equity in representation of the expert measure development team. The resulting instrument, designed for clinical, research, and self-advocacy applications, has parallel Dutch and English versions and is available for immediate use. Future cross-cultural research with this instrument could help identify contextual risk and resilience factors to better understand and address inequities faced by this large intersectional population.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
97
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
9 / 97 (9,3 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
29 / 487 (6,0 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 29 / 189 (15,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 21 / 410 (5,1 %).
Occurrences citées rattachées à la base AutiHub
189 / 487 (38,8 %)
Auteurices cité·es distinct·es rattaché·es : 117 / 410 (28,5 %)
Occurrences rattachées, non identifiées comme autistes
160 / 189 (84,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 160 / 487 (32,9 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 96 / 117 (82,1 %).
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