D'une approche centrée sur l'enfant à une approche centrée sur la famille : perspectives des aidants sur la réussite du traitement de l'autisme

Titre original en anglais : From Child-Focused to Family-Centered: Caregiver Perspectives on Success in Autism Treatment

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Befi, M., Bemmel, V., Cook, I., Ikola, J., Schlueter, C., & Pfingston, B. (2026). From Child-Focused to Family-Centered: Caregiver Perspectives on Success in Autism Treatment. The Family Journal, 34(2), 364-379. https://doi.org/10.1177/10664807261420133

Date de publication: 16/02/2026 Ajout dans AutiHub: 25/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
1 / 6 (16,7 %)
  1. Michelle Befi
  2. Vincent Bemmel
  3. Ian Cook
  1. Jennifer Ikola
  2. Courtney Schlueter
  3. Ben Pfingston *

Résumé

Le traitement de l'autisme aux États-Unis est souvent centré sur le changement de comportement de l'enfant, les aidants étant considérés comme des acteurs adjoints plutôt que centraux. En revanche, cette étude qualitative examine les perspectives des aidants au début du traitement, en explorant la manière dont ils conceptualisent la réussite et perçoivent les obstacles. Nous avons analysé les réponses recueillies lors de l'admission auprès de 81 aidants d'enfants autistes à travers trois stades de développement (<6, 6–11, 12–17 ans) au moyen d'une analyse thématique structurée. Quatre thèmes fondamentaux ont émergé, organisés en deux thèmes généraux : Comprendre et soutenir l'enfant autiste (Couches du soi ; Les aider à s'épanouir) et Autonomiser le système familial (Nous sommes aussi concernés ; Guérir le système). Les aidants ont exprimé des objectifs à plusieurs niveaux couvrant la régulation émotionnelle, l'identité sociale, l'autonomie, la capacité d'accompagnement, le bien-être familial et la navigation au sein du système. Leurs perspectives remettent en question les modèles traditionnels centrés uniquement sur l'enfant en mettant en évidence la réciprocité entre les résultats concernant l'enfant et le fonctionnement familial. Les résultats soulignent la pertinence des thérapeutes conjugaux et familiaux (MFTs) pour diriger des soins de l'autisme holistiques et centrés sur la famille, en faisant le lien entre les priorités de l'enfant et celles de la famille, en adaptant le soutien à la préparation des aidants et en surmontant les obstacles systémiques. En plaçant les voix des aidants au centre d'un cadre systémique, cette étude propose une voie vers des interventions en matière d'autisme plus adaptées aux relations et plus durables.

Autism treatment in the United States often centers on child behavior change, with caregivers viewed as adjunct rather than central. In contrast, this qualitative study examines caregiver perspectives at treatment entry, exploring how they conceptualize success and perceive barriers. We analyzed intake responses from 81 caregivers of autistic children across three developmental stages (<6, 6–11, 12–17 years) using a structured thematic analysis. Four core themes emerged, organized into two overarching themes: Understanding and Supporting the Autistic Child (Layers of Self; Help Them Thrive) and Empowering the Family System (We’re in This Too; Healing the System). Caregivers articulated layered goals spanning emotional regulation, social identity, autonomy, caregiving capacity, family wellbeing, and systemic navigation. Their perspectives challenge traditional child-only models by highlighting the reciprocity between child outcomes and family functioning. Findings underscore the suitability of Marriage and Family Therapists (MFTs) to lead holistic, family-centered autism care, bridging child and family priorities, tailoring support to caregiver readiness, and navigating systemic barriers. By centering caregiver voices within a systemic framework, this study offers a pathway toward more relationally responsive and sustainable autism interventions.

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 14:09.

Références citées
99
Avec un DOI
92
Sans DOI, à partir du texte brut de la bibliographie
7
7 / 99 (7,1 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
4 / 99 (4,0 %)
Références avec noms d’auteurices détectés
96 / 99 (97,0 %)
Sans nom d’auteurice détecté
3
Sans titre structuré
4
Sans identifiant stable
7
Références avec noms bruts d’auteurices restant à vérifier
3
Références avec problème de récupération des métadonnées externes
0
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
456
À partir du DOI ou de métadonnées externes
456
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
3
142 / 456 (31,1 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 314 / 456 (68,9 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
11 / 456 (2,4 %)
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 : 11 / 142 (7,7 %). Personnes distinctes identifiées comme autistes : 9 / 433 (2,1 %).
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