Une enquête qualitative sur les perspectives d'adultes autistes concernant les objectifs d'intervention destinés aux enfants autistes

Titre original en anglais : A qualitative investigation into autistic adults’ perspectives on intervention goals for autistic children

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Schuck, R. K., Geng, A., Doss, Y., Lin, F., Crousore, H., Baiden, K. M. P., Dwyer, P., Williams, Z. J., & Wang, M. (2024). A qualitative investigation into autistic adults’ perspectives on intervention goals for autistic children. Neurodiversity, 2. https://doi.org/10.1177/27546330241266718

Date de publication: 01/01/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
9
Auteur·ices de la publication identifié·es comme autistes
2 / 9 (22,2 %)
  1. Rachel K. Schuck
  2. Alicia Geng
  3. Yvette Doss
  4. Florence Lin
  5. Hannah Crousore
  1. Kaitlynn M. P. Baiden
  2. Patrick Dwyer *
  3. Zachary J. Williams *
  4. Mian Wang

Résumé

Les programmes d'intervention comportementale destinés aux enfants autistes ciblent divers objectifs, notamment les compétences de communication, sociales, scolaires et de la vie quotidienne. Une composante essentielle des interventions éthiques est la validité sociale, c'est-à-dire la mesure dans laquelle les parties intéressées jugent acceptables les objectifs, les procédures et les résultats du programme. Toutefois, des recherches antérieures indiquent que la validité sociale est rarement évaluée du point de vue autiste. Ainsi, bien que les objectifs d'intervention puissent être acceptables du point de vue des parents ou des cliniciens, on sait peu de choses sur la manière dont les personnes autistes perçoivent ces objectifs. Dans cette étude, des adultes autistes ont reçu des objectifs d'intervention courants et ont été invités à fournir un retour écrit à leur sujet. Bien que ces questions ouvertes aient été présentées comme une question facultative du questionnaire, chaque objectif a reçu des commentaires ouverts de 120 à 189 participants (sur un maximum possible de 214 ayant complété les parties pertinentes du questionnaire). Les réponses ont été analysées au moyen d'une analyse thématique réflexive par une équipe de chercheurs non autistes et autistes. Quatre thèmes ont été identifiés : « Manière d'être autiste et problème de la double empathie » ; « Soutenir l'autonomie, l'autoreprésentation et l'interdépendance » ; « La mise en œuvre est importante » ; et « Aller au-delà du comportement ». Les résultats contribueront, espérons-le, à aider les prestataires à élaborer des objectifs d'intervention qui soient alignés sur les perspectives de la communauté autiste. Résumé grand public Les programmes d'intervention destinés aux enfants autistes visent à aider les enfants dans les domaines de la communication, des compétences sociales, des tâches scolaires, ainsi que des comportements et activités de la vie quotidienne. Un facteur majeur pour garantir que ces programmes sont éthiques est la « validité sociale », ce qui signifie s'assurer que les objectifs, les procédures et les résultats du programme sont jugés acceptables par les personnes concernées. Historiquement, les points de vue des personnes autistes concernant ces interventions ont été négligés ; les chercheurs se sont plutôt concentrés sur les perspectives des cliniciens et des parents. Cette étude a utilisé un questionnaire comportant des questions ouvertes afin d'explorer les perspectives d'adultes autistes sur l'acceptabilité d'objectifs d'intervention courants. Notre équipe de recherche, qui comprenait des membres autistes et non autistes, a analysé et catégorisé les réponses au questionnaire en quatre thèmes : « Manière d'être autiste et problème de la double empathie » ; « Soutenir l'autonomie, l'autoreprésentation et l'interdépendance » ; « La mise en œuvre est importante » ; et « Aller au-delà du comportement ». Les résultats visent à encourager les prestataires à élaborer des objectifs d'intervention qui s'alignent sur les perspectives de la communauté autiste.

Behavioral intervention programs for autistic children target a variety of goals including communication, social, academic, and daily living skills. A key component of ethical interventions is social validity, the extent to which interested parties find the program goals, procedures, and outcomes acceptable. However, past research indicates that social validity is rarely assessed from the autistic point of view. Thus, while intervention goals may be acceptable from parent or clinician perspectives, little is known regarding autistic individuals’ views of these goals. In this study, autistic adults were presented with common intervention goals and asked to provide written feedback on them. Though these open-ended questions were presented as an optional survey question, each goal received open-ended feedback from 120 to 189 participants (out of a possible 214 who completed the relevant survey portions). Responses were analyzed using reflexive thematic analysis by a team of nonautistic and autistic researchers. Four themes were identified: “Autistic Way of Being & The Double Empathy Problem”; “Supporting Autonomy, Self-Advocacy, and Interdependence”; “Implementation Matters,", and “Moving Beyond Behavior.” Findings will hopefully aid providers in developing intervention goals that are aligned with the perspectives of the autistic community. Lay abstract Intervention programs for autistic children aim to help children with communication, social skills, academic tasks, and everyday behaviors and activities. A major factor in ensuring these programs are ethical is “social validity,” which means ensuring that the program goals, procedures, and outcomes are deemed acceptable by those involved. Historically, the views of autistic individuals on these interventions have been overlooked; instead, researchers have focused on the perspectives of clinicians and parents. This study used a survey with open-ended questions to explore autistic adults’ perspectives on the acceptability of common intervention goals. Our research team, which included both autistic and nonautistic members, analyzed and categorized the survey answers into four themes: “Autistic Way of Being & The Double Empathy Problem”; “Supporting Autonomy, Self-Advocacy, and Interdependence”; “Implementation Matters”; and “Moving Beyond Behavior.” Findings aim to encourage providers to develop intervention goals that align with the perspectives of the autistic community.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
90
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
14 / 90 (15,6 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
20 / 256 (7,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 20 / 102 (19,6 %). Auteurices cité·es distinct·es identifié·es comme autistes : 13 / 225 (5,8 %).
Occurrences citées rattachées à la base AutiHub
102 / 256 (39,8 %)
Auteurices cité·es distinct·es rattaché·es : 76 / 225 (33,8 %)
Occurrences rattachées, non identifiées comme autistes
82 / 102 (80,4 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 82 / 256 (32,0 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 63 / 76 (82,9 %).
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