Les points de vue des membres de la communauté sur les interventions concernant l'autisme : Effets de la proximité avec les personnes autistes ayant des déficiences intellectuelles et les personnes autistes non verbales

Ajouté le 06/09/2024

Type de contenu

Article de revue du type Recherche scientifique ( ; anglais)

Lynnette Hersh , Patrick Dwyer * , Steven Kapp * , Sergey Shevchuk-Hill , Ava Gurba * , Elizabeth Kilgallon * , Ally Pax Arcari Mair , David Chang , Susan Rivera , Kristen Gillespie-Lynch
Community member views on autism intervention: Effects of closeness to autistic people with intellectual disabilities and nonspeaking autistic people publié dans la revue "Autism in adulthood" Preprint, 19 pages , doi: 10.1089/aut.2023.0202

*Quatre co-auteur·rices se sont publiquement identifié·es comme autistess. [En savoir plus sur cette mention]

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Résumé/Présentation

Contexte: La controverse entourant le mouvement de la neurodiversité (NDM), les modèles sociaux et médicaux du handicap, les objectifs d'intervention pour l'autisme et les attributions causales du handicap contribuent à des divisions au sein des communautés autistes et de l'autisme. La présente étude examine les points de vue des membres des communautés autistes et de l'autisme, qu'ils soient autistes ou non, sur ces sujets. Nous avons exploré si ces points de vue sont influencés par le fait d'entretenir des relations proches avec des personnes autistes ayant des déficiences intellectuelles (DI) et des personnes autistes non verbales (NSA).
Méthodes : Un total de 504 membres des communautés autistes et de l'autisme (278 autistes, 226 non-autistes) ont répondu à un sondage en ligne sur les modèles théoriques et les objectifs d'intervention. Les participants ont indiqué s'ils avaient une ou plusieurs relations proches avec des personnes NSA, des personnes autistes avec DI, ni l'un ni l'autre, ou les deux.
Résultats : Globalement, il y avait un consensus considérable concernant les objectifs d'intervention souhaités : les objectifs de normalisation étaient généralement rejetés, tandis que les participants soutenaient généralement les objectifs de bien-être, de réforme sociétale, d'environnement de soutien et de compétences adaptatives. Bien que les participants autistes aient signalé moins de soutien pour les objectifs de normalisation et de compétences adaptatives que les participants non autistes, ils ont exprimé un peu plus d'enthousiasme pour la réforme sociétale et les environnements de soutien que les non-autistes. Les personnes autistes soutenaient davantage le NDM et moins le modèle médical que les non-autistes. Ceux qui avaient des relations proches avec des personnes autistes avec DI ont attribué des notes plus élevées aux objectifs de compétences adaptatives. En moyenne, les participants non proches des personnes autistes avec DI percevaient les défis de ceux sans DI comme étant légèrement plus dus à des facteurs environnementaux/sociaux que les défis de ceux avec DI; il n'y avait pas de telle différence statistique chez ceux qui étaient proches des personnes autistes avec DI.
Conclusion : Davantage de recherches examinant les points de vue de la communauté, incluant davantage de personnes autistes avec DI et des personnes NSA elles-mêmes, sont nécessaires. Cependant, les résultats de cette étude suggèrent que les communautés autistes et de l'autisme plus larges considèrent que les objectifs d'intervention cohérents avec le NDM sont appropriés pour toutes les personnes autistes, y compris les personnes NSA et celles avec DI. Étant donné que les interventions en autisme ont souvent poursuivi des objectifs de normalisation impopulaires, cela suggère des directions pour une réforme.

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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