« Rien sur nous, sans nous » : priorités de recherche pour les filles, les femmes et les personnes autistes de genre divers en Australie

Titre original en anglais : ‘Nothing About Us, Without Us’: Research Priorities for Autistic Girls, Women and Gender Diverse People in Australia

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Grove, R., Clapham, H., Moodie, T., Gurrin, S., & Hall, G. (2024). ‘Nothing About Us, Without Us’: Research Priorities for Autistic Girls, Women and Gender Diverse People in Australia. Journal of Autism and Developmental Disorders, 55(7), 2522-2538. https://doi.org/10.1007/s10803-024-06330-5

Date de publication: 06/05/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
4 / 5 (80,0 %)
  1. Rachel Grove
  2. Hayley Clapham *
  3. Tess Moodie *
  4. Sarah Gurrin *
  5. Gabrielle Hall *

Résumé

Les filles, les femmes et les personnes autistes de genre divers ont des besoins spécifiques qui sont sous-représentés dans la recherche. Les priorités de recherche sont souvent établies par des organismes de financement, des chercheurs, des parents, des aidants et des professionnels de santé, et peuvent ne pas répondre aux besoins de la communauté autiste diverse. Ce projet coproduit visait à déterminer quelles recherches bénéficieraient à la vie des filles, des femmes et des personnes autistes de genre divers en Australie. Nous avons interrogé 47 filles, femmes et personnes autistes de genre divers âgées de sept ans et plus, et avons obtenu les retours de 411 personnes autistes supplémentaires au moyen d'une enquête en ligne. Les jeunes personnes autistes ont identifié six priorités de recherche essentielles, notamment : (1) une meilleure compréhension et un meilleur soutien à l'école, (2) la compréhension de nos expériences, forces et défis, (3) un soutien en santé mentale spécifique à l'autisme, (4) les amitiés et relations autistes, (5) les expériences de diversité de genre et (6) des aménagements pour nous faciliter la vie. Huit domaines prioritaires de recherche essentiels ont été identifiés par les adultes autistes, notamment : (1) comprendre et soutenir les besoins spécifiques à l'âge adulte, (2) les expériences de traumatisme, de maltraitance et de violence sexuelle, (3) soutenir la santé mentale et le bien-être, (4) lever les obstacles dans les soins de santé, (5) comprendre et soutenir les besoins en santé physique, (6) lever les obstacles dans l'éducation et le milieu professionnel, (7) comprendre le rôle de la société, adopter la neurodiversité et l'importance de l'identité autiste et (8) coconcevoir la recherche et les soutiens avec les personnes autistes. Nous présentons une discussion sur l'importance de se concentrer sur ces domaines prioritaires de recherche dans les futures recherches sur l'autisme en Australie.

Autistic girls, women and gender diverse people have specific needs that are underrepresented in research. Research priorities are often established by funding bodies, researchers, parents, carers and health professionals and may not meet the needs of the diverse Autistic community. This co-produced project aimed to identify what research would benefit the lives of Autistic girls, women and gender diverse people in Australia. We interviewed 47 Autistic girls, women and gender diverse people aged seven and above and obtained feedback from an additional 411 Autistic people through an online survey. Autistic young people identified six key research priorities including (1) better understanding and support at school, (2) understanding our experiences, strengths and challenges, (3) autism specific mental health support, (4) Autistic friendships and relationships, (5) experiences of gender diversity and (6) accommodations to make life easier for us. Eight key research priority areas were identified by Autistic adults including (1) understanding and supporting specific needs in adulthood, (2) experiences of trauma, abuse and sexual violence, (3) supporting mental health and wellbeing, (4) addressing barriers in healthcare, (5) understanding and supporting physical health needs, (6) addressing barriers in education and the workplace, (7) understanding the role of society, embracing neurodiversity and the importance of Autistic identity and (8) co-designing research and supports with Autistic people. We provide a discussion around the importance of focusing on these research priority areas in future autism research in Australia.

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
52
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
11 / 52 (21,2 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
16 / 164 (9,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 16 / 98 (16,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 10 / 142 (7,0 %).
Occurrences citées rattachées à la base AutiHub
98 / 164 (59,8 %)
Auteurices cité·es distinct·es rattaché·es : 76 / 142 (53,5 %)
Occurrences rattachées, non identifiées comme autistes
82 / 98 (83,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 82 / 164 (50,0 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 66 / 76 (86,8 %).
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