« Nous traversons un traumatisme » : expériences de parents sud-asiatiques concernant le diagnostic d’autisme et les soutiens précoces pour leurs enfants autistes en Australie

Titre original en anglais : “We go through trauma”: South Asian parents’ experiences of autism diagnosis and early supports for their autistic children in Australia

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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Smith, J., Aulich, A., Bent, C. A., Constantine, C., Franks, K., Goonetilleke, N., Green, C. C., Ijaz, R., Patel, K., Said, H., Wood, S., & Hudry, K. (2024). “We go through trauma”: South Asian parents’ experiences of autism diagnosis and early supports for their autistic children in Australia. Research in Autism Spectrum Disorders, 114, 102408. https://doi.org/10.1016/j.rasd.2024.102408

Publication date: 25/04/2024 Ajout dans AutiHub: 14/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
12
Auteur·ices de la publication identifié·es comme autistes
1 / 12 (8,3 %)
  1. Jodie Smith
  2. Alexandra Aulich
  3. Catherine A. Bent
  4. Christos Constantine *
  1. Kathleen Franks
  2. Nilushi Goonetilleke
  3. Cherie C. Green
  4. Rabia Ijaz
  1. Kanisha Patel
  2. Helen Said
  3. Sarah Wood
  4. Kristelle Hudry

Résumé

La croissance de la communauté migrante sud-asiatique australienne a fortement augmenté au cours de la dernière décennie. Pourtant, nous disposons de peu d’informations sur les expériences des parents migrants sud-asiatiques élevant un enfant autiste en Australie. Cette recherche participative éclaire cette question en rapportant des récits de première main sur l’accès à un diagnostic d’autisme et la réception de soutiens précoces pour les parents sud-asiatiques et leurs enfants autistes vivant en Australie. Des parents originaires d’Inde, du Pakistan et du Sri Lanka (n = 13) ont été interrogés dans leur langue de préférence. Au cours des entretiens, les parents ont été interrogés sur leurs expériences du processus diagnostique et de la navigation dans les soutiens précoces pour leur enfant autiste. Les entretiens ont été analysés au moyen d’une analyse thématique réflexive. Les parents ont décrit avoir rencontré une multitude de difficultés pour accéder à des soutiens précoces pour l’autisme, notamment des connaissances limitées, des problèmes de financement, de longues listes d’attente et des cliniciens de mauvaise qualité. Ils ont également déclaré avoir eu du mal à accepter les diagnostics de leur enfant et avoir fait face à des jugements au sein de leur communauté. Contrairement à d’autres communautés migrantes australiennes, ce groupe de parents n’a pas décrit l’obtention de soutiens spécifiques à leur communauté et a souvent cheminé seul. Ces difficultés cumulées ont eu un impact sur la santé mentale des parents. Pourtant, les parents ont également décrit rechercher de manière proactive autant de soutien que possible, préférant des interventions précoces intensives et comportementales, fondées sur des objectifs. Les cliniciens devraient être conscients que les familles issues de certains groupes migrants ou de minorités culturelles peuvent être plus isolées que d’autres, et réfléchir à la meilleure manière de soutenir autrement un sentiment d’appartenance communautaire. Le fait que ces parents aient exprimé une préférence pour des soutiens intensifs et comportementaux pour l’autisme met également en évidence la diversité des points de vue et des souhaits liés aux services au sein des communautés autistes et de l’autisme.

Growth of the Australian South Asian migrant community has surged over the last decade. Yet we have minimal information about migrant South Asian parents’ experiences of raising an autistic child in Australia. This participatory research informs the issue through reporting first-hand accounts of accessing an autism diagnosis and receiving early supports for South Asian parents and their autistic children living in Australia. Parents from India, Pakistan and Sri Lanka (n = 13) were interviewed in their preferred language. During interviews, parents were asked about their experiences of the diagnostic process and navigating early supports for their autistic child. Interviews were analysed using reflexive thematic analysis. Parents described experiencing myriad challenges to accessing early autism supports, including limited knowledge, funding issues, lengthy waiting lists, and poor-quality clinicians. They also reported struggling to accept their child’s diagnoses and facing judgement from within their community. Unlike other migrant Australian communities, this group of parents did not describe obtaining community-specific supports and often navigated their journeys alone. These cumulative challenges impacted parents’ mental health. Yet, parents also described proactively seeking as much support as possible, preferring goal-based, intensive, behavioural early interventions. Clinicians should be aware that families from particular migrant/cultural minority groups may be more isolated than others, and consider how best to support a sense of community belonging in other ways. That these parents expressed preference for intensive, behavioural autism supports also highlights the diversity of service-related views and desires in the autistic and autism communities.

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 : 19/09/2026 01:01.

Références citées
57
Avec un DOI
46
Sans DOI, à partir du texte brut de la bibliographie
10
4 / 57 (7,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
9 / 57 (15,8 %)
Références avec noms d’auteurices détectés
48 / 57 (84,2 %)
Sans nom d’auteurice détecté
9
Sans titre structuré
9
Sans identifiant stable
10
Références avec noms bruts d’auteurices restant à vérifier
9
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
244
À partir du DOI ou de métadonnées externes
244
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
12
103 / 244 (42,2 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 141 / 244 (57,8 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
8 / 244 (3,3 %)
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 : 8 / 103 (7,8 %). Personnes distinctes identifiées comme autistes : 5 / 213 (2,3 %).
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