Le diagnostic comme nouveau départ et non comme fin : une étude participative de photovoice sur le parcours d’un diagnostic d’autisme à l’âge adulte

Titre original en anglais : Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood

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Cage, E., Botha, M., McDevitt, L., King, K. N., Biscoe, L., Tucker, K., & Pearson, A. (2024). Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood. Autism, 28(8), 2014-2027. https://doi.org/10.1177/13623613231220418

Date de publication: 17/01/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
2 / 7 (28,6 %)
  1. Eilidh Cage
  2. Monique Botha *
  3. Lynsey McDevitt
  4. Karis N. King
  1. Liz Biscoe
  2. Kirsty Tucker
  3. Amy Pearson *

Résumé

Les personnes autistes diagnostiquées à l’âge adulte rapportent souvent que cette expérience peut changer leur vie, mais le parcours diagnostique pose des problèmes. Peu d’études prennent en compte les points de vue des personnes qui cherchent actuellement un diagnostic ou replacent l’expérience du diagnostic dans le contexte du développement d’une identité autiste. Dans cette étude qualitative participative, nous avons exploré les expériences du parcours d’un diagnostic d’autisme à l’âge adulte au Royaume-Uni. Nous avons recruté six femmes (âgées de 21 à 46 ans) qui cherchaient un diagnostic et qui ont travaillé avec les chercheurs universitaires au cours de quatre séances afin d’élaborer l’étude, de partager leurs expériences et d’analyser les thèmes. Lors d’une séance, elles ont réalisé un entretien semi-structuré associé à photovoice, une méthode d’action communautaire, afin d’expliquer leurs expériences et d’y réfléchir. Nous avons utilisé une analyse thématique réflexive pour identifier des schémas, et quatre thèmes clés ont été identifiés : (1) « tout s’est effondré », (2) « être vu », (3) « de la compréhension, pas du jugement, s’il vous plaît » et (4) « voici une brochure, débrouillez-vous ». Les thèmes reflétaient un désir de changement et d’amélioration du soutien tant pour le diagnostic que pour le développement de l’identité autiste. Conformément à la méthodologie photovoice, nous avons conjointement identifié des actions visant à améliorer le diagnostic à l’âge adulte, notamment l’implication des personnes autistes dans l’amélioration des critères diagnostiques, l’écoute accrue des personnes autistes par les principaux groupes professionnels et communautaires, et la nécessité pour les services de soutien au diagnostic d’être flexibles et de reconnaître la neurodivergence au sens large et l’intersectionnalité. Résumé grand public De nombreuses personnes recherchent un diagnostic d’autisme à l’âge adulte, et elles disent souvent qu’être diagnostiquées peut changer positivement leur vie, mais l’expérience d’obtenir un diagnostic peut être difficile. Nous entendons souvent peu les points de vue des personnes qui recherchent actuellement un diagnostic, et nous parlons peu avec elles de la manière dont le diagnostic est lié à leur identité. Dans notre étude, nous avons examiné les expériences de personnes recherchant actuellement un diagnostic d’autisme au Royaume-Uni. Nous avons utilisé des méthodes participatives, dans lesquelles six personnes recherchant un diagnostic ont été incluses comme collaboratrices dans la recherche. Elles ont participé à quatre séances différentes, au cours desquelles elles ont contribué à façonner la recherche, participé à des entretiens sur leurs expériences et aidé à analyser les schémas présents dans l’ensemble des entretiens. Nous avons également utilisé une méthode appelée photovoice pendant les entretiens, grâce à laquelle elles pouvaient utiliser des photos pour montrer ce qu’elles ressentaient en parcourant le processus diagnostique. Nous avons identifié quatre thèmes communs : (1) toutes avaient vécu une forme de crise avant de rechercher un diagnostic ; (2) lorsqu’elles ont réalisé qu’elles étaient autistes, elles se sont senties vues ; (3) le processus et les critères diagnostiques ne fonctionnaient pas, et elles se sentaient jugées par les cliniciens ; et (4) le soutien disponible après le diagnostic était limité. Lors d’une autre séance, nous avons identifié des actions à entreprendre ayant des implications pour les politiques et les pratiques, notamment l’amélioration du processus et des critères diagnostiques avec les personnes autistes, une écoute accrue des personnes autistes par des personnes telles que les médecins généralistes et les cliniciens, et la nécessité pour les services de diagnostic d’être plus flexibles et de reconnaître les différents aspects de l’identité et de la neurodivergence d’une personne.

Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people currently seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21–46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) ‘everything shattered’, (2) ‘being seen’, (3) ‘understanding not judgement, please’ and (4) ‘here’s a leaflet, off you go’. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality. Lay abstract Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone’s identity and neurodivergence.

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
65
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
13 / 65 (20,0 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
50 / 260 (19,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 50 / 139 (36,0 %). Auteurices cité·es distinct·es identifié·es comme autistes : 43 / 222 (19,4 %).
Occurrences citées rattachées à la base AutiHub
139 / 260 (53,5 %)
Auteurices cité·es distinct·es rattaché·es : 106 / 222 (47,7 %)
Occurrences rattachées, non identifiées comme autistes
89 / 139 (64,0 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 89 / 260 (34,2 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 63 / 106 (59,4 %).
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