'Rien sur nous, sans nous' : priorités de recherche concernant les filles, les femmes et les personnes autistes de genres divers en Australie

Ajouté le 02/07/2024

Type de contenu

Article de revue du type Recherche scientifique ( ; anglais)

Rachel Grove, Hayley Clapham*, Tess Moodie, Sarah Gurrin*, Gabrielle Hall* , 'Nothing about us, without us': research priorities for autistic girls, women and gender diverse people in australia publié dans la revue "Journal of autism and developmental disorders", Preprint, 17 pages , doi:10.1007/s10803-024-06330-5

*Trois co-auteur·rices sont autistes. [En savoir plus sur cette mention]

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Les filles, les femmes et les personnes autistes de divers genres ont des besoins spécifiques qui sont sous-représentés dans la recherche. Les priorités de recherche sont souvent établies par les organismes de financement, les chercheurs, les parents, les soignants et les professionnels de la santé et peuvent ne pas répondre aux besoins de la communauté autiste diversifiée. Ce projet réalisé en 'co-design' visait à identifier les recherches qui pourraient bénéficier à la vie des filles, des femmes et des personnes autistes de divers genres en Australie. Nous avons interrogé 47 filles, femmes et personnes autistes de divers genres âgées de sept ans et plus et obtenu les commentaires de 411 personnes autistes supplémentaires grâce à une enquête en ligne. Les jeunes autistes ont identifié six priorités de recherche clés, notamment (1) une meilleure compréhension et un meilleur soutien à l'école, (2) la compréhension de nos expériences, de nos forces et de nos défis, (3) un soutien en santé mentale spécifique à l'autisme, (4) les amitiés et relations autistes, (5) des expériences de diversité de genre et (6) des aménagements pour nous faciliter la vie. Huit domaines prioritaires de recherche clés ont été identifiés par les adultes autistes, notamment (1) comprendre et soutenir les besoins spécifiques à l'âge adulte, (2) les expériences de traumatisme, d'abus et de violence sexuelle, (3) soutenir la santé mentale et le bien-être, (4) surmonter les obstacles aux soins de santé. , (5) comprendre et soutenir les besoins en matière de santé physique, (6) surmonter les obstacles dans l'éducation et sur le lieu de travail, (7) comprendre le rôle de la société, adopter la neurodiversité et l'importance de l'identité autiste et (8) co-concevoir des recherches et des soutiens avec des personnes autistes. Nous proposons une discussion sur l'importance de se concentrer sur ces domaines prioritaires de recherche dans la future recherche 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.

Pour information:

(1) les références en bleu sont des ressources référencées sur notre site;

(2) les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la listes des ressources publiées et partagées sur le site;

(3) les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes. [En savoir plus sur cette mention]

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