Expériences de défenseurs pairs familiaux soutenant des familles noires élevant des enfants autistes

Titre original en anglais : Experiences of Family Peer Advocates Supporting Black Families Raising Autistic Children

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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Pearson, J. N., Manns, L. D. C., Stewart-Ginsburg, J. H., Martin, D. M., & Johnson, J. (2024). Experiences of Family Peer Advocates Supporting Black Families Raising Autistic Children. Exceptional Children, 91(1), 57-73. https://doi.org/10.1177/00144029241271151

Date de publication: 21/08/2024 Ajout dans AutiHub: 02/10/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
1 / 5 (20,0 %)
  1. Jamie N. Pearson
  2. Lonnie D. C. Manns
  3. Jared H. Stewart-Ginsburg
  4. DeVoshia M. Martin
  5. Janelle Johnson *

Résumé

Les professionnels jouent un rôle important dans le moment et la manière dont les familles accèdent aux services liés à l’autisme. Les familles noires connaissent souvent un accès inégal aux services liés à l’autisme par rapport aux familles blanches. Les défenseurs pairs familiaux (Family Peer Advocates, FPA) sont des professionnels ayant une expérience personnelle du processus diagnostique, des soutiens en milieu scolaire et des services communautaires, et qui fournissent une formation et un soutien aux familles. Comprendre les expériences des FPA peut aider les chercheurs et les praticiens à mieux répondre aux besoins des enfants autistes noirs et de leurs familles. L’objectif de cette étude qualitative était d’explorer les expériences des FPA dans la fourniture de services et de ressources liés à l’autisme aux familles noires ayant des enfants autistes. Nous avons mené des groupes de discussion avec 32 FPA issus de deux organismes situés dans un État du Sud-Est. Trois thèmes ont émergé de notre analyse inductive des données concernant les expériences des FPA : a) assumer de multiples rôles ; b) travailler avec « zéro ressource » ; et c) des variations dans la réactivité raciale. Au vu de nos résultats, nous appelons les FPA à veiller à prendre en compte et à répondre à l’impact croisé de la race sur les expériences des familles en matière de diagnostic et de services liés à l’autisme.

Professionals play an important role in when and how families access autism services. Black families often experience disparate access to autism services compared to White families. Family Peer Advocates (FPAs) are professionals who have personal experience with the diagnostic process, school-based supports, and community-based services, and provide training and support to families. Understanding the experiences of FPAs may help researchers and practitioners better address the needs of Black autistic children and their families. The purpose of this qualitative study was to explore FPAs’ experiences providing autism-related services and resources for Black families with autistic children. We conducted focus groups with 32 FPAs from two agencies in one southeastern state. Three themes emerged from our inductive data analysis regarding FPA experiences: (a) serving multiple roles; (b) working with “zero resources”; and (c) variations in racial responsivity. Given our findings, we call for FPAs to ensure they are considering and responding to the intersecting impact of race on families’ experiences with autism diagnosis and services.

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Références citées
53
Avec un DOI
48
Sans DOI, à partir du texte brut de la bibliographie
3
2 / 53 (3,8 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
1 / 53 (1,9 %)
Références avec noms d’auteurices détectés
52 / 53 (98,1 %)
Sans nom d’auteurice détecté
1
Sans titre structuré
1
Sans identifiant stable
3
Références avec noms bruts d’auteurices restant à vérifier
1
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0
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Noms d’auteurices détectés dans la bibliographie citée
283
À partir du DOI ou de métadonnées externes
283
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
1
70 / 283 (24,7 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 213 / 283 (75,3 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
2 / 283 (0,7 %)
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 : 2 / 70 (2,9 %). Personnes distinctes identifiées comme autistes : 2 / 238 (0,8 %).
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