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 se sont publiquement identifié·es comme autistess. [En savoir plus sur cette mention]

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Résumé/Présentation

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.

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 liste 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.

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