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

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.