Points de vue de la communauté sur la neurodiversité, les modèles du handicap et les interventions pour l'autisme: Des méthodes mixtes révèlent des objectifs communs et des tensions clés

Ajouté le 19/09/2024

Type de contenu

Article de revue du type Recherche scientifique ( ; anglais)

Patrick Dwyer*, Ava Gurba*, Steven Kapp*, Elizabeth Kilgallon*, Lynnette Hersh, David Chang, Susan Rivera, Kristen Gillespie-Lynch , Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions publié dans la revue "Autism", Preprint, 18 pages , doi:10.1177/13623613241273029

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

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Les controverses entourant le mouvement de la neurodiversité peuvent être exacerbées par la confusion sur sa signification. Par exemple, certains suggèrent que la neurodiversité implique l'acceptation du modèle social, tandis que d'autres la décrivent comme plus nuancée. Nous avons cherché à aider à résoudre ces points de vue conflictuels en invitant 504 membres de la communauté autiste et de l'autisme (278 autistes, 226 non-autistes), dont 100 chercheurs (41 autistes), 122 professionnels (35 autistes) et 162 parents/aidants (53 autistes). Ils ont évalué le mouvement de la neurodiversité, le modèle social, le modèle médical et les objectifs des interventions, et ont répondu à des questions ouvertes sur la signification de la neurodiversité, du mouvement de la neurodiversité et des modèles du handicap. Le soutien au mouvement de la neurodiversité était associé à l'approbation de réformes sociétales et à la création d'environnements plus favorables, ainsi qu'à un soutien moindre à la normalisation et aux interventions axées sur les compétences adaptatives, bien que l'enseignement des compétences adaptatives ait été largement soutenu dans l'ensemble. Bien que les participants aient souvent suggéré que le modèle social attribue le handicap uniquement à la société, cette vision "forte" n'était pas universelle. Les partisans du modèle social "fort" soutenaient encore certaines interventions ciblant les caractéristiques des individus (notamment l'enseignement des compétences adaptatives, le traitement de la dépression et de l'épilepsie). Les résultats confirment que les partisans du mouvement de la neurodiversité dénoncent la normalisation, mais sont ouverts à des soutiens individualisés. Les résultats mettent en évidence un fort soutien pour le leadership autiste (en particulier parmi les personnes autistes, y compris les parents autistes) et pour les réformes sociétales, et suggèrent que des discours simplifiés peuvent provoquer une confusion quant aux points de vue des défenseurs.

Controversies regarding the neurodiversity movement may be exacerbated by confusion over its meaning. For example, some suggest neurodiversity entails acceptance of the social model, whereas others describe it as more nuanced. We aimed to help resolve conflicting viewpoints by inviting insights from 504 autistic and autism community members (278 autistic, 226 non-autistic), including 100 researchers (41 autistic), 122 professionals (35 autistic) and 162 parents/caregivers (53 autistic). They rated the neurodiversity movement, social model, medical model and intervention goals, and answered open-ended questions regarding the meaning of neurodiversity, the neurodiversity movement and disability models. Neurodiversity movement support was associated with endorsing societal reform and making environments more supportive, and lower support for normalization and adaptive skill interventions, though teaching adaptive skills was widely supported overall. Although participants often suggested the social model attributes disability solely to society, this ‘strong’ view was not universal. ‘Strong’ social model supporters still endorsed some interventions targeting individuals’ characteristics (specifically, teaching adaptive skills, curing depression and epilepsy). Findings confirm that neurodiversity movement supporters denounce normalization, but are open to individualized supports. Findings highlight strong support for autistic leadership (especially among autistic people, including autistic parents) and for societal reform, and suggest that oversimplified rhetoric may cause confusion regarding advocates’ views.

Pour information:

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(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;

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