'Nous avons tellement à offrir' : points de vue des membres de la communauté sur la recherche sur l'autisme

Ajouté le 19/06/2024

Type de contenu

Article de revue du type Recherche scientifique ( ; anglais)

Tori Haar*, Charlotte Brownlow, Gabrielle Hall*, Melanie Heyworth*, Wenn Lawson*, Rebecca Poulsen*, Tamara Reinisch, Elizabeth Pellicano , 'We have so much to offer': Community members' perspectives on autism research publié dans la revue "Autism", Preprint, 14 pages , doi:10.1177/13623613241248713

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

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La recherche sur l'autisme évolue. Les militants et les chercheurs autistes souhaitent que les personnes autistes de la communauté aient davantage leur mot à dire sur ce qui est étudié et comment. Mais nous n’avons pas demandé aux membres de la communauté ce qu’ils en pensaient. Cette étude a utilisé les informations obtenues auprès de 55 membres de la communauté, y compris des personnes autistes, leurs familles et des professionnels travaillant avec des personnes autistes, à partir d'une étude existante sur leurs priorités en matière de recherche sur l'autisme. Nous avons réexaminé ce qui avait été dit pour voir si nous pouvions comprendre les points de vue et les expériences des membres de la communauté en matière de recherche sur l'autisme. Les gens étaient tout à fait d’accord sur le fait que la recherche peut jouer un rôle important pour façonner de bonnes vies pour les autistes. Ils ont également estimé que de grands changements étaient nécessaires pour que la recherche y parvienne. Certains de ces changements étaient que les chercheurs devraient cesser de penser à l'autisme de manière étroite et négative, dans laquelle les personnes autistes sont considérées comme le problème. Les chercheurs doivent réfléchir davantage à la manière d’améliorer les systèmes, les expériences et à la manière dont les autres réagissent face aux personnes autistes. Ils souhaitent également que la communauté de l’autisme soit davantage impliquée dans les recherches menées et dans la manière dont elles le sont. Les résultats de notre étude mettent en évidence le potentiel de la recherche pour être positif lorsque les personnes autistes et leurs familles sont écoutées, abordées avec compréhension et respectées et valorisées en tant qu'individus dans le processus de recherche.

Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven't asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members' views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process.

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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