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

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Résumé/Présentation

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.

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