Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis.
E Zhang, Makenna Snyder, Wafaa Alduraidi and 4 others
PMID 42572330WHAT IT FOUND
Autistic young adults said they were pushed into adult health care unprepared: nobody taught them how appointments, insurance or the system work.
Rural participants had few providers and long travel; urban ones faced fragmented, rushed care. Parents often covered the gaps.
Key findings
01Participants said providers assumed they already knew how health care works and that nobody walked them through visits; they described confusion, panic and not knowing their own medical history.
02Participants wanted to manage their own care but many still relied on a parent for appointments, insurance, transport and deciding whether a symptom needed a doctor; some found that reliance embarrassing or intrusive, while others saw it as a safety net.
03Rural and urban participants described different barriers: rural participants had too few providers and long distances to travel, urban participants faced complicated and fragmented systems, and those on Medicaid reported the hardest time finding a provider who would take it.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
Everyone had to be willing and able to sit through a 60 to 90 minute interview, so autistic young people with higher support needs, more distress or less contact with services are underrepresented. The sample was small and gender-diverse, so the authors could not compare experiences by gender, transition status or other overlapping identities. A parent was present for four of the interviews, which may have changed what those participants chose to say. Rural and urban differences are described from interviews, not tested; the authors ran no statistical comparisons between groups. The researchers brought their own lived experience of disability and autism to the analysis, which they say strengthened rapport and sensitivity but may also have shaped what they noticed.
Declared interests
The authors declared no potential conflicts of interest in relation to the research, authorship or publication of the article. Participants and advisory board members were paid for their time. No separate funding statement appears in the article text provided.
The easy way to misread this
Do not read this as evidence that any particular transition programme works. Nothing was tested here: these are 19 interviews with people who were already engaged enough with services to volunteer for a long conversation. Also do not treat full independence as the finish line. Several participants who described themselves as independent were still relying on a parent for appointments, insurance and transport.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →