The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Clark, S. (2025). The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective. Journal of Patient Experience, 12, 23743735251333601-23743735251333601. https://doi.org/10.1177/23743735251333601

Publication date: 15 Apr 2025 Added to AutiHub: 17 Sep 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
1
Publication authors identified as autistic
1 / 1 (100.0%)
  1. Sarah Clark *

Abstract

Autistic individuals with hypermobile Ehlers-Danlos syndrome (hEDS) often face unique challenges navigating healthcare systems due to lack of clinician awareness, diagnostic delays, misdiagnoses, and systemic barriers. Drawing on my own lived experience within the UK's National Health Service (NHS), this patient perspective article integrates personal narratives with the research and literature, highlighting critical gaps in clinical care, offering practical recommendations to enhance equity and inclusion. Recommendations include: improved clinician education on neurodivergence and overlapping conditions, improving holistic patient-centred communication, and collaborative care models that prioritise patient needs, learning from lived expertise.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

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
10
With a DOI
10
Without a DOI, from raw bibliography text
0
5 / 10 (50.0%) cited references include at least one author identified as autistic.
References with data to complete
0 / 10 (0.0%)
References with detected author names
10 / 10 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
References with raw author names still to review
0
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
41
From DOI or external metadata
41
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
23 / 41 (56.1%) names are linked to an author already present in AutiHub. 18 / 41 (43.9%) names are not yet linked.
Names linked to a person identified as autistic
12 / 41 (29.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 12 / 23 (52.2%). Distinct people identified as autistic: 7 / 32 (21.9%).
  1. Anne G. Lever , Hilde M. Geurts (2016). Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 46(6), 1916-1930. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2722-8 OpenAlex: https://openalex.org/W2272786625
    Crossref OpenAlex OpenCitations
  3. Colin M.E. Halverson , Heather L. Penwell , Clair A. Francomano (2023). Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes . SSM - Qualitative Research in Health, 3, 100237. Elsevier BV.
    Type: Article DOI: 10.1016/j.ssmqr.2023.100237 OpenAlex: https://openalex.org/W4319787162
    Crossref OpenAlex OpenCitations
  4. Brad Tinkle , Marco Castori , Britta Berglund , Helen Cohen , Rodney Grahame , Hanadi Kazkaz et al. (2017). Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 48-69. Wiley.
    Type: Article DOI: 10.1002/ajmg.c.31538 OpenAlex: https://openalex.org/W2585772542
    Crossref OpenAlex OpenCitations
  5. Colin M.E. Halverson , Sha Cao , Susan M. Perkins , Clair A. Francomano (2023). Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndrome . Genetics in Medicine Open, 1(1), 100812. Elsevier BV.
    Type: Article DOI: 10.1016/j.gimo.2023.100812 OpenAlex: https://openalex.org/W4367315658
    Crossref OpenAlex OpenCitations
  6. Erik Kindgren , Antonia Quiñones Perez , Rajna Knez (2021). Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study . Neuropsychiatric Disease and Treatment, Volume 17, 379-388. Informa UK Limited.
    Type: Article DOI: 10.2147/ndt.s290494 OpenAlex: https://openalex.org/W3126676499
    Crossref OpenAlex OpenCitations
  9. Sarah Clark * (2021). Help me trust you after my misdiagnosis . Br Med J., 373, n1175. BMJ.
    Type: Article DOI: 10.1136/bmj.n1175 OpenAlex: https://openalex.org/W3165791466
    Crossref OpenAlex