"There's no one-size-fits-all kind of solution": An interpretative phenomenological analysis of the experiences of autistic individuals living with Ehlers-Danlos syndrome.
Autistic women with Ehlers-Danlos syndrome see their identity shift daily, and a clinician's belief or doubt can tip that balance for years.
01Research in Context
What this study did
Beckwith et al. (2025) talked with four autistic women who also have Ehlers-Danlos syndrome. They used a method called interpretative phenomenological analysis. This means they asked open questions and let each woman tell her own story.
The team wanted to learn how these women see themselves while living with two lifelong conditions. They met each participant for a long interview and then looked for shared themes.
What they found
Three big ideas came out. First, the women said their illness identity keeps changing. Some days they feel 'autistic,' other days 'bendy,' and sometimes both or neither.
Second, doctors' attitudes shaped how they felt about themselves. Kind, curious clinicians helped them feel valid. Dismissive ones made them hide symptoms.
Third, bad days pushed them to find new meaning. They reframed pain as a signal to rest, not a personal failure.
How this fits with other research
Palikara et al. (2022) looked at English school plans and found only 7.7 % clearly held the child's own words. Rhoslyn's work extends that finding: even adult autistic voices are still missing when care is rushed or skeptical.
Chandroo et al. (2020) asked Australian high-schoolers with autism about transition planning. Like the women in Rhoslyn's study, the teens wanted real input but got token check-boxes. Both papers show that 'including voice' on paper does not equal feeling heard.
Almughyiri (2026) interviewed people with developmental disabilities in Saudi Arabia about pain. Cultural beliefs colored whose pain was believed. Rhoslyn's UK women faced a different bias: clinicians who doubted that autism and EDS could coexist. Different places, same theme—clinician bias decides whose report counts.
Najdowski et al. (2003) spoke with parents of children with tuberous sclerosis. Parents remembered small acts of honesty and information sharing years later. Rhoslyn's participants echoed that: a single validating appointment could shift their whole illness story.
Why it matters
If you assess or treat autistic clients who mention joint pain, fatigue, or clumsiness, pause before you flag it as 'sensory' or 'avoidance.' Ask, 'Could hypermobility play a role?' Then refer for a rheumatology opinion when needed. In your notes, quote the client's exact words about pain instead of paraphrasing. That tiny act tells them their voice—and their body—belong in the room.
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02At a glance
03Original abstract
OBJECTIVE: Approximately a third of individuals live with multiple health conditions and this number is rising. Research suggests that living with a chronic condition can profoundly impact upon one's life and identity, however little attention has been paid to the experiences of those with multiple conditions. Ehlers-Danlos syndrome (EDS) is a rarely-diagnosed connective tissue disorder causing extensive debilitating symptoms and while these symptoms are primarily physical, EDS often co-occurs with autism. This study sought to gain insight into the experience of autistic individuals living with EDS and thus investigate how illness identity occurs with multiple conditions. DESIGN: Interpretative Phenomenological Analysis (IPA) was used. METHODS: Semi-structured interviews were conducted with four autistic women living with EDS. RESULTS: Analysis resulted in three superordinate themes, consisting of 'Transformation,' 'Making sense,' and 'The negatives.' While interrelated, these themes capture the ways in which the conditions have changed the participants' lives, both positively and negatively. Furthermore, they capture how the participants make sense and create meaning in their new identities. CONCLUSION: Individuals living with co-occurring conditions have multiple illness identities which affect their overall sense of self. Within this study, participants incorporated both conditions into their new identities, although the extent to which they rejected or accepted these conditions varied individually based on numerous biopsychosocial factors, which shifted continually, including healthcare professionals' attitudes and awareness of conditions, stigma, finding community and symptom severity. Thus, illness identity is in a constant state of flux. These findings highlight the need for more individualised, supportive care for autistic individuals living with EDS.
Research in developmental disabilities, 2025 · doi:10.1016/j.ridd.2025.105084