Construire l'avenir ensemble: façonner la recherche sur l'autisme par une participation significative

Ajouté le 15/08/2024

Type de contenu

Article de revue du type Compte-rendu ( ; anglais)

Sue Fletcher-Watson, Jon Adams*, Kabie Brook*, Tony Charman, Laura Crane, James Cusack*, Susan Leekam, Damian Milton*, Jeremy Parr, Elizabeth Pellicano , Making the future together: shaping autism research through meaningful participation publié dans la revue "Autism", n°23, vol.4, 11 pages , doi:10.1177/1362361318786721

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

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Les méthodes de recherche participative relient les chercheurs aux communautés concernées pour atteindre des objectifs communs. Ces méthodes peuvent produire des résultats pertinents pour la vie des personnes, augmentant ainsi la probabilité d'avoir un impact positif. Dans le contexte d'un vaste corpus de recherches sur l'autisme, en constante expansion, avec une mise en œuvre souvent insuffisante et des preuves de mécontentement au sein de la communauté, il existe un argument puissant en faveur de la recherche participative sur l'autisme. Afin de développer un cadre pour ce type de collaboration, une série de séminaires a été organisée au Royaume-Uni, co-produite par des personnes autistes et non autistes possédant une expertise académique, professionnelle et expérientielle. Cet article rend compte des résultats de cette série, en identifiant cinq thèmes pertinents pour la création d'une communauté de pratique en recherche participative : le Respect, l'Authenticité, les Hypothèses, l'Infrastructure et l'Empathie. Chaque thème est lié à un exemple spécifique tiré de la recherche ou au-delà, pour inspirer de nouvelles pratiques dans ce domaine. Nous appelons au développement de compétences en recherche participative au sein de la communauté de recherche sur l'autisme et à la facilitation d'un leadership accru des personnes autistes dans la recherche, ainsi qu'à un partenariat renforcé. Un tel travail, s'il est réalisé avec un haut niveau de qualité, est susceptible de mener à une meilleure traduction en pratique et à de meilleurs résultats pour les personnes autistes et ceux qui les soutiennent.

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.

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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