Quelles sont les priorités de recherche sur l’autisme chez les adultes autistes en Écosse ?

Ajouté le 23/06/2024

Type de contenu

Article de revue du type Recherche scientifique (février 2024 ; anglais)

Eilidh Cage, Catherine Crompton, Sarah Dantas, Khiah Strachan, Rachel Birch*, Mark Robinson, Stasa Morgan-Appel*, Charlie MacKenzie-Nash, Aaron Gallagher, Monique Botha* , What are the autism research priorities of autistic adults in Scotland? publié dans la revue "Autism", Preprint, 12 pages , doi:10.1177/13623613231222656

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

=> Accès libre et gratuit

Bien que la recherche ait le potentiel d'améliorer la vie des personnes autistes, de nombreux financements sont consacrés à la recherche sur des sujets qui, selon les autistes, ont peu d'impact sur leur vie quotidienne. La vie des personnes autistes peut être différente selon l'endroit où elles vivent, et l'Écosse est un pays unique à bien des égards. Nous voulions savoir sur quels sujets les personnes autistes en Écosse souhaitaient faire l'objet de recherches. Notre équipe de chercheurs autistes et non autistes (y compris des chercheurs universitaires et communautaires) a créé une enquête dans laquelle 225 adultes autistes ont évalué et classé l'importance des sujets de recherche possibles et ont partagé leurs réflexions sur les sujets qui leur importaient. Les cinq sujets les plus importants étaient la santé mentale et le bien-être, l'identification et le diagnostic des personnes autistes, les services de soutien (y compris les soins de santé et les services sociaux), les connaissances et attitudes des personnes non autistes et les problèmes affectant les femmes autistes. Les trois sujets les moins importants étaient la génétique ou les aspects biologiques de l'autisme, les traitements/interventions en matière d'autisme et les causes de l'autisme. Nos résultats indiquent que les personnes autistes en Écosse souhaitent que la recherche se concentre sur les choses qui comptent pour leur vie quotidienne. En outre, le gouvernement écossais affirme qu'il écoutera les personnes autistes dans ses derniers plans politiques, et nous pensons que la prise en compte des priorités de recherche des personnes autistes en constitue un élément important. Nos résultats s’ajoutent également aux appels croissants en faveur d’un changement dans la manière et les sujets sur lesquels les chercheurs en autisme effectuent leurs recherches.

Although research has the potential to improve autistic people's lives, lots of funding goes towards research looking at topics which autistic people say has little impact in their everyday lives. Autistic people's lives can be different depending on where they live, and Scotland is a unique country in many ways. We wanted to find out which topics autistic people in Scotland want to see research on. Our team of autistic and non-autistic researchers (including university-based and community researchers) created a survey where 225 autistic adults rated and ranked the importance of possible research topics and shared their thoughts on what topics mattered to them. The five most important topics were mental health and well-being, identifying and diagnosing autistic people, support services (including healthcare and social care), non-autistic people's knowledge and attitudes and issues impacting autistic women. The three least important topics were genetics or biological aspects of autism, autism treatments/interventions and causes of autism. Our findings indicate that autistic people in Scotland want research to focus on things that matter to their day-to-day lives. Also, the Scottish government says they will be listening to autistic people in their latest policy plans, and we believe that considering autistic people's research priorities is an important part of this. Our findings also add to growing calls for change to happen in how and what autism researchers do research on.

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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