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

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. <i>Recommendations include:</i> 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.

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Publication Details

Journal
Journal of Patient Experience
Published
2025-04-15
DOI
https://doi.org/10.1177/23743735251333601
Citations
1
Primary Topic
Connective tissue disorders research
Type
article
Field-Weighted Citation Impact
1.82
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article

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

Sarah Clark
1 citations
Journal of Patient Experience
Connective tissue disorders research
1.82
article

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

Sarah Clark
article en
1 citations

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. <i>Recommendations include:</i> 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.

Journal of Patient ExperienceVol. 12
Bournemouth University (GB)
Reduced inequalities
Openalex Percentile: Top 17%
Connective tissue disorders research
1.82
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