Réimaginer le lien : le rôle du diagnostic tardif de l'autisme dans le rétablissement des troubles des conduites alimentaires et le soutien social

Titre original en anglais : Re-imagining connection: the role of late autism diagnosis in eating disorder recovery and social support

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». deux auteur·ices de cette publication sont identifié·es comme autistes dans le projet.

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Downs, J. & Adams, M. (2025). Re-imagining connection: the role of late autism diagnosis in eating disorder recovery and social support. Journal of Eating Disorders, 13(1), Article 120. https://doi.org/10.1186/s40337-025-01271-5

Date de publication: 23/06/2025 Ajout dans AutiHub: 28/10/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

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Auteurs

Auteur·ices des publications
2
Auteur·ices de la publication identifié·es comme autistes
2 / 2 (100,0 %)
  1. James Downs *
  2. Marissa Adams *

Résumé

Cet article explore la relation complexe entre l'autisme, le lien social et le rétablissement des troubles des conduites alimentaires, en s'appuyant sur les expériences vécues de deux adultes autistes diagnostiqués tardivement ayant des antécédents de troubles des conduites alimentaires anciens et sévères. À l'aide de méthodes narratives et autoethnographiques, nous examinons comment le diagnostic tardif de l'autisme recoupe les dimensions sociales de la maladie ainsi que le processus de traitement et de rétablissement. Nous identifions les obstacles particuliers auxquels les personnes autistes souffrant de troubles des conduites alimentaires sont confrontées pour établir des liens sociaux significatifs, s'orienter dans les systèmes de soutien et accéder à des soins appropriés. En intégrant des perspectives personnelles aux recherches existantes, nous plaidons en faveur d'un dépistage plus précoce de l'autisme et d'approches thérapeutiques affirmant la neurodiversité, qui accueillent et valorisent les différences autistiques, y compris les forces inhérentes à la neurodivergence. Cela exige un changement dans la façon dont le soutien social est conceptualisé dans les soins des troubles des conduites alimentaires, en donnant la priorité à la création de liens significatifs qui répondent aux besoins sociaux et émotionnels spécifiques des personnes autistes. Nous plaidons pour des pratiques cliniques qui non seulement reconnaissent les difficultés rencontrées par les personnes neurodivergentes, mais accueillent également les forces qu'elles apportent, en favorisant des environnements où les personnes autistes peuvent s'engager de manière authentique dans leur processus de rétablissement. Cette approche bénéficie en définitive tant aux patients qu'aux prestataires de soins, en promouvant des soins plus inclusifs, empathiques et efficaces pour tous. Cet article est rédigé par deux personnes ayant vécu avec des troubles des conduites alimentaires anciens et sévères et ayant reçu un diagnostic d'autisme à l'âge adulte. À l'aide de récits de leur vie, les auteurs explorent comment des diagnostics d'autisme retardés ou manqués ont affecté leur santé mentale, leur vie sociale et leurs expériences de traitement. Ils décrivent comment le fait de se sentir incompris et non soutenus a aggravé leurs troubles des conduites alimentaires, en particulier avant le diagnostic. Recevoir un diagnostic d'autisme plus tard dans la vie les a aidés à reformuler leurs difficultés, à réduire la honte et à commencer à établir des liens plus significatifs et plus soutenants. Les auteurs montrent l'intérêt de reconnaître et de soutenir les différences autistiques, plutôt que de les considérer comme des problèmes à corriger, et comment cela peut soutenir le rétablissement d'une manière qui paraît plus respectueuse et authentique. Ils soulignent également que le soutien social peut prendre des formes très différentes pour les personnes autistes et mettent en garde contre les approches universelles dans le traitement. En s'appuyant à la fois sur l'expérience vécue et la recherche, l'article formule des recommandations sur la manière dont les services consacrés aux troubles des conduites alimentaires peuvent devenir plus inclusifs et plus adaptés aux besoins des personnes autistes. Cela comprend un dépistage plus précoce de l'autisme, des options de soutien flexibles et la collaboration avec des personnes ayant une expérience vécue afin de concevoir des soins meilleurs et plus compatissants.

This paper explores the complex relationship between autism, social connection, and eating disorder recovery, drawing on the lived experiences of two late-diagnosed autistic adults with histories of longstanding and severe eating disorders. Using narrative and autoethnographic methods, we examine how delayed autism diagnosis intersects with the social dimensions of illness, and the process of treatment and recovery. We identify unique barriers autistic individuals with eating disorders face in building meaningful social connections, navigating support systems, and accessing appropriate care. By integrating personal insights with existing research, we advocate for earlier autism screening and neurodiversity-affirming treatment approaches that embrace and value autistic differences, including the strengths inherent in neurodivergence. This requires a shift in how social support is conceptualised within eating disorder care, prioritising the creation of meaningful connections that address the unique social and emotional needs of autistic individuals. We argue for clinical practices that not only recognise the challenges faced by neurodivergent individuals but also embrace the strengths they bring, fostering environments where autistic individuals can engage authentically in their recovery process. This approach ultimately benefits patients and treatment providers alike, promoting more inclusive, empathetic, and effective care for all. This article is written by two individuals who have lived with longstanding and severe eating disorders and were diagnosed as autistic in adulthood. Using stories from their lives, the authors explore how delayed or missed autism diagnoses affected their mental health, social lives, and experiences of treatment. They describe how feeling misunderstood and unsupported made their eating disorders worse, especially before being diagnosed. Receiving an autism diagnosis later in life helped them reframe their struggles, reduce shame, and begin building more meaningful and supportive connections. The authors show the value of recognising and supporting autistic differences, rather than seeing them as problems to fix, and how this can support recovery in ways that feel more respectful and authentic. They also highlight that social support can look very different for autistic people, and caution against one-size-fits-all approaches in treatment. Drawing on both lived experience and research, the paper makes recommendations for how eating disorder services can become more inclusive and responsive to autistic people’s needs. This includes earlier autism screening, flexible support options, and working alongside people with lived experience to design better, more compassionate care.

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 : 28/10/2026 22:15.

Références citées
108
Avec un DOI
99
Sans DOI, à partir du texte brut de la bibliographie
9
20 / 108 (18,5 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
8 / 108 (7,4 %)
Références avec noms d’auteurices détectés
104 / 108 (96,3 %)
Sans nom d’auteurice détecté
4
Sans titre structuré
8
Sans identifiant stable
9
Références avec noms bruts d’auteurices restant à vérifier
4
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
509
À partir du DOI ou de métadonnées externes
509
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
20
146 / 509 (28,7 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 363 / 509 (71,3 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
26 / 509 (5,1 %)
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 : 26 / 146 (17,8 %). Personnes distinctes identifiées comme autistes : 19 / 454 (4,2 %).
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