Autism and hypermobile Ehlers-Danlos syndrome (hEDS): A challenging combination

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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: 4 Aug 2026 Added to AutiHub: 17 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
2 / 4 (50.0%)
  1. Sarah Clark *
  2. E. Portch
  3. R.L. Moseley *
  4. E. Arden-Close

Abstract

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.

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 20 Sep 2026 01:01.

Cited references
89
With a DOI
76
Without a DOI, from raw bibliography text
13
21 / 89 (23.6%) cited references include at least one author identified as autistic.
References with data to complete
2 / 89 (2.2%)
References with detected author names
87 / 89 (97.8%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
13
References with raw author names still to review
2
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
371
From DOI or external metadata
371
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
147 / 371 (39.6%) names are linked to an author already present in AutiHub. 224 / 371 (60.4%) names are not yet linked.
Names linked to a person identified as autistic
46 / 371 (12.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 46 / 147 (31.3%). Distinct people identified as autistic: 37 / 346 (10.7%).
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