« Un groupe de compagnons de route qui comprennent » : entretiens avec des personnes autistes sur le soutien par les pairs après le diagnostic à l’âge adulte

Titre original en anglais : “A Group of Fellow Travellers Who Understand”: Interviews With Autistic People About Post-diagnostic Peer Support in Adulthood

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Crompton, C. J., Hallett, S., McAuliffe, C., Stanfield, A. C., & Fletcher‐Watson, S. (2022). “A Group of Fellow Travellers Who Understand”: Interviews With Autistic People About Post-diagnostic Peer Support in Adulthood. Frontiers in Psychology, 13, 831628-831628. https://doi.org/10.3389/fpsyg.2022.831628

Date de publication: 07/03/2022 Ajout dans AutiHub: 05/07/2026 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. Catherine J. Crompton
  2. Sonny Hallett *
  3. Christine McAuliffe
  4. Andrew C. Stanfield
  5. Sue Fletcher‐Watson

Résumé

Recevoir un diagnostic d’autisme à l’âge adulte peut être un événement qui change la vie, ayant un impact sur l’identité, les relations et la santé mentale. Un manque de soutien après le diagnostic a été mis en évidence par des adultes autistes, leurs alliés, des cliniciens et des prestataires de services. Il peut être une source de détresse pour les adultes autistes, renforçant les sentiments d’isolement social et de rejet. Le soutien par les pairs pourrait constituer un modèle rentable, flexible et durable pour fournir un soutien communautaire aux adultes autistes. Cependant, il existe peu de recherches sur la valeur du soutien par les pairs, malgré les appels de la communauté autiste. Cette étude qualitative a exploré les expériences et les besoins des personnes autistes après le diagnostic, en identifiant des façons spécifiques dont le soutien par les pairs peut leur être bénéfique et en explorant les limites du soutien par les pairs. Douze adultes autistes ayant tous reçu un diagnostic d’autisme à l’âge adulte ont réalisé un entretien semi-structuré portant sur l’expérience diagnostique, le soutien nécessaire et fourni après le diagnostic, l’engagement auprès de la communauté autiste et le soutien par les pairs après le diagnostic. L’analyse thématique des transcriptions d’entretiens a abouti à quatre thèmes : (1) inadéquation entre le soutien nécessaire et le soutien fourni ; (2) connexion communautaire ; (3) soutien flexible et personnalisé ; et (4) durabilité. Les participants ont indiqué que le soutien par les pairs peut constituer un mécanisme utile pour soutenir les adultes autistes après le diagnostic et offre des possibilités uniques qui ne sont pas disponibles par d’autres canaux de soutien. Bien qu’un soutien informel par les pairs existe, il pourrait être plus durable et plus efficace s’il était bien soutenu et financé.

Receiving a diagnosis of autism in adulthood can be a life changing event, impacting identity, relationships, and mental health. A lack of post-diagnostic support has been highlighted by autistic adults, their allies, clinicians, and service providers. It can be a source of distress for autistic adults, reinforcing feelings of social isolation and rejection. Peer support could be a cost-effective, flexible, and sustainable model to provide community-based support for autistic adults. However, there is little research on the value of peer support, despite calls from the autistic community. This qualitative study explored autistic experiences and needs post-diagnosis, identifying specific ways that peer support may benefit them, and exploring the limitations of peer support. Twelve autistic adults who had all received an autism diagnosis in adulthood completed a semi-structured interview focussing on the diagnostic experience, post-diagnostic support needed and provided, engagement with the autistic community, and post-diagnostic peer support. Thematic analysis of interview transcripts resulted in four themes: (1) Mismatch in support needed and provided; (2) Community connection; (3) Flexible and personalised support; and (4) Sustainability. Participants indicated that peer support may be a useful mechanism to support autistic adults' post-diagnosis and offers unique opportunities not available through other support channels. Though informal peer support exists, it could be more sustainable and effective if well-supported and funded.

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
69
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
12 / 69 (17,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
14 / 225 (6,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 14 / 105 (13,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 13 / 192 (6,8 %).
Occurrences citées rattachées à la base AutiHub
105 / 225 (46,7 %)
Auteurices cité·es distinct·es rattaché·es : 78 / 192 (40,6 %)
Occurrences rattachées, non identifiées comme autistes
91 / 105 (86,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 91 / 225 (40,4 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 65 / 78 (83,3 %).
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