Autisme et syndrome d’Ehlers-Danlos hypermobile (hEDS) : une combinaison difficile

Titre original en anglais : Autism and hypermobile Ehlers-Danlos syndrome (hEDS): A challenging combination

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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Clark, S., Portch, E., Moseley, R., & Arden-Close, E. (2026). Autism and hypermobile Ehlers-Danlos syndrome (hEDS): A challenging combination. Research in Autism, 137, 202989. https://doi.org/10.1016/j.reia.2026.202989

Publication date: 04/08/2026 Ajout dans AutiHub: 17/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
2 / 4 (50,0 %)
  1. Sarah Clark *
  2. E. Portch
  3. R.L. Moseley *
  4. E. Arden-Close

Résumé

Le syndrome d’Ehlers-Danlos hypermobile (hEDS), un trouble multisystémique du tissu conjonctif ayant d’importantes répercussions biopsychosociales, survient à une fréquence plus élevée que prévu chez les personnes autistes, mais les répercussions spécifiques sur leur vie quotidienne et leurs expériences de soins de santé sont largement non documentées. En particulier, les informations sont limitées concernant les manières dont chaque affection (autisme, hEDS) pourrait compliquer ou améliorer les besoins associés à l’autre. Nous avons mené des entretiens semi-structurés auprès de cinq femmes ayant reçu un diagnostic à la fois d’autisme et de hEDS, qui ont été analysés à l’aide de l’analyse phénoménologique interprétative (IPA). Bien que les parcours vers le diagnostic aient été longs et éprouvants, l’obtention des diagnostics a apporté les bénéfices de la connaissance de soi et de l’autocompassion, d’une meilleure autogestion de leur santé et d’une meilleure négociation du soutien pratique et émotionnel. Les participantes ont également indiqué que, si l’autisme facilitait certains aspects de l’autogestion du hEDS, le hEDS pouvait exacerber les difficultés médicales déjà rencontrées de manière disproportionnée par les personnes autistes. Dans l’ensemble, nos résultats préliminaires suggèrent que les besoins de soins de santé uniques de ce sous-groupe vulnérable et mal compris pourraient ne pas être satisfaits par l’offre actuelle de soins de santé ; de plus, les forces autistiques potentiellement adaptatives pour la gestion de la maladie pourraient ne pas être couramment favorisées. Afin de mieux répondre à ces besoins, une formation à la communication destinée aux professionnels de santé, l’adaptation des environnements de soins aux patients et l’adoption d’une approche holistique de la prise en charge sont recommandées.

Hypermobile Ehlers-Danlos syndrome (hEDS), a multi-systemic connective tissue disorder with extensive biopsychosocial impacts, occurs with greater than expected frequency in autistic people, yet the specific impacts on their daily lives and healthcare experiences are largely undocumented. In particular, there is limited information regarding ways in which each condition (autism, hEDS) might complicate or ameliorate the needs associated with the other one. We conducted semi-structured interviews with five women diagnosed with both autism and hEDS, which were analysed using Interpretative Phenomenological Analysis (IPA). While journeys to diagnosis were lengthy and distressing, obtaining diagnoses yielded the benefits of self-knowledge and self-compassion, improved self-management of their health, and better negotiation of practical and emotional support. Participants also noted that while autism facilitated some aspects of hEDS self-management, hEDS could exacerbate the medical challenges already disproportionately faced by autistic individuals. Overall, our preliminary findings suggest that the unique healthcare needs of this poorly understood and vulnerable subgroup may be unmet by current healthcare provision; moreover, potentially adaptive autistic strengths for illness management may not be commonly facilitated. To better accommodate these needs, communication training for healthcare professionals, adaptation of patient care environments and adoption of a holistic management approach are recommended.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

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 : 20/09/2026 01:01.

Références citées
89
Avec un DOI
76
Sans DOI, à partir du texte brut de la bibliographie
13
21 / 89 (23,6 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
2 / 89 (2,2 %)
Références avec noms d’auteurices détectés
87 / 89 (97,8 %)
Sans nom d’auteurice détecté
2
Sans titre structuré
2
Sans identifiant stable
13
Références avec noms bruts d’auteurices restant à vérifier
2
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
371
À partir du DOI ou de métadonnées externes
371
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
2
147 / 371 (39,6 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 224 / 371 (60,4 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
46 / 371 (12,4 %)
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 : 46 / 147 (31,3 %). Personnes distinctes identifiées comme autistes : 37 / 346 (10,7 %).
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