Points de vue des membres de la communauté sur l'intervention en autisme : effets de la proximité avec des personnes autistes présentant une déficience intellectuelle et des personnes autistes non parlantes

Titre original en anglais : Community Member Views on Autism Intervention: Effects of Closeness to Autistic People with Intellectual Disabilities And Nonspeaking Autistic People

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». quatre auteur·ices de cette publication sont identifié·es comme autistes dans le projet.

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Hersh, L. H., Dwyer, P., Kapp, S. K., Shevchuk-Hill, S., Gurba, A. N., Kilgallon, E., Mair, A. P. A., Chang, D. S., Rivera, S. M., & Gillespie-Lynch, K. (2024). Community Member Views on Autism Intervention: Effects of Closeness to Autistic People with Intellectual Disabilities And Nonspeaking Autistic People. Autism in Adulthood, 6(3), 253-271. https://doi.org/10.1089/aut.2023.0202

Date de publication: 01/09/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

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Auteurs

Auteur·ices des publications
10
Auteur·ices de la publication identifié·es comme autistes
4 / 10 (40,0 %)
  1. Lynnette H. Hersh
  2. Patrick Dwyer *
  3. Steven K. Kapp *
  4. Sergey Shevchuk-Hill
  5. Ava N. Gurba *
  1. Elizabeth Kilgallon *
  2. Ally Pax Arcari Mair
  3. David S. Chang
  4. Susan M. Rivera
  5. Kristen Gillespie-Lynch

Résumé

Contexte : La controverse concernant le mouvement de la neurodiversité (NDM), les modèles social et médical du handicap, les objectifs des interventions en autisme et les attributions causales du handicap contribue aux divisions au sein des communautés autistes et de l'autisme. La présente étude examine les points de vue de membres autistes et non autistes des communautés autistes et de l'autisme sur ces sujets. Nous avons examiné si ces points de vue sont façonnés par le fait d'avoir des relations proches avec des personnes autistes présentant une déficience intellectuelle (DI) et des personnes autistes non parlantes (NSA). Méthodes : Au total, 504 membres des communautés autistes et de l'autisme (278 autistes, 226 non autistes) ont répondu à une enquête 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 présentant une DI, aucune de ces deux catégories, ou les deux. Résultats : Globalement, il existait 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 favorable et de compétences adaptatives. Bien que les participants autistes aient rapporté moins de soutien aux objectifs de normalisation et de compétences adaptatives que les participants non autistes, ils ont exprimé un enthousiasme quelque peu plus grand pour la réforme sociétale et les environnements favorables que les personnes non autistes. Les personnes autistes soutenaient davantage le NDM et moins le modèle médical que les personnes non autistes. Les personnes proches de personnes autistes présentant une DI ont attribué des évaluations plus élevées aux objectifs de compétences adaptatives. En moyenne, les participants qui n'étaient pas proches de personnes autistes présentant une DI considéraient que les difficultés des personnes sans DI étaient légèrement davantage dues à des facteurs environnementaux et sociaux que les difficultés des personnes présentant une DI ; aucune différence statistique de ce type n'a été observée parmi les personnes proches de personnes autistes présentant une DI. Conclusion : Des recherches supplémentaires examinant les points de vue de la communauté, avec l'inclusion d'un plus grand nombre de personnes autistes présentant une DI et de personnes NSA elles-mêmes, sont nécessaires, mais les résultats de cette étude suggèrent que les communautés autistes et de l'autisme au sens large considèrent les objectifs d'intervention conformes au NDM comme appropriés pour toutes les personnes autistes, y compris les personnes NSA et celles présentant une DI. Comme les interventions en autisme ont souvent poursuivi des objectifs de normalisation impopulaires, cela suggère des orientations pour la réforme.

Background: Controversy regarding the neurodiversity movement (NDM), the social and medical models of disability, autism intervention goals, and causal attributions of disability contributes to divides in the autistic and autism communities. The present study investigates the views of autistic and non-autistic autistic and autism community members on these topics. We explored whether these views are shaped by having close relationships to autistic people with intellectual disabilities (ID) and nonspeaking autistic (NSA) people. Methods: A total of 504 autistic and autism community members (278 autistic, 226 non-autistic) completed an online survey about theoretical models and intervention goals. Participants reported whether they had one or more close relationships with NSA people, autistic people with ID, neither, or both. Results: Overall, there was considerable consensus regarding desired intervention goals: normalization goals were generally opposed, while participants generally supported well-being, societal reform, supportive environment, and adaptive skill goals. While autistic participants reported less support for normalization and adaptive skills goals than non-autistic participants, they expressed somewhat more enthusiasm for societal reform and supportive environments than non-autistic people. Autistic people supported the NDM more and the medical model less than non-autistic people. Those close to autistic people with ID gave higher ratings to adaptive skill goals. On average, participants not close to autistic people with ID saw the challenges of those without ID as being slightly more due to environmental/social factors than the challenges of those with ID; there was no such statistical difference among those close to autistic people with ID. Conclusion: Further research investigating community views, with the inclusion of more autistic people with ID and NSA people themselves, is needed, but the results of this study suggest that the broader autistic and autism communities see NDM-consistent intervention goals as appropriate for all autistic people, including NSA people and those with ID. As autism interventions have often pursued unpopular normalization goals, this suggests directions for reform.

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 02/10/2026 11:54.

Références citées
165
Avec un DOI
133
Sans DOI, à partir du texte brut de la bibliographie
32
43 / 165 (26,1 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
23 / 165 (13,9 %)
Références avec noms d’auteurices détectés
142 / 165 (86,1 %)
Sans nom d’auteurice détecté
23
Sans titre structuré
23
Sans identifiant stable
31
Références avec noms bruts d’auteurices restant à vérifier
23
Références avec problème de récupération des métadonnées externes
1
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
583
À partir du DOI ou de métadonnées externes
583
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
23
362 / 583 (62,1 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 221 / 583 (37,9 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
127 / 583 (21,8 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 127 / 362 (35,1 %). Personnes distinctes identifiées comme autistes : 77 / 464 (16,6 %).
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