Improving Health Care Services for Autistic Young Adults: Development and Use of a Self-Reported Health Care Transition Readiness Assessment.
N C Cheak-Zamora, L Boccardi, G Bertucci
Autistic young adults ranked understanding their own health conditions and feeling safe as most important for independence.
Communication challenges and reliance on caregivers were their biggest barriers. Digital reminders were central to daily functioning.
Key findings
1Participants ranked 'understanding and being able to talk about your physical and mental health challenges' as the most important topic for independence, followed by 'feeling safe in your home, community and on the internet.' 'Knowledge about sex, reproduction and safe relationships' was most frequently ranked as least important.
2Four themes emerged from the interviews: need for memory aids, learning behaviours and gaining skills, barriers to independence, and feeling like 'I can't do it.' Automatic digital reminders were described as essential for staying organized; no participant relied exclusively on manual reminders.
3Most participants reported relying heavily on caregivers for appointments, medications, and explaining their health. In every case where support was needed, the reason given was a communication challenge or anxiety about communicating with others.
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What it does not show
Fourteen participants is a small sample, and the authors state the results are not generalizable to all autistic young adults. Autism diagnoses were self-reported and not independently verified by the research team. Only verbal participants could take part; those who use alternative communication methods were excluded. The sample was 78.6% white and had a mean age of 23, so it does not represent the full range of autistic young adults. No data were collected on participants' living situations, which the authors note may shape how they report independence. Four participants brought a parent into the interview, and the authors acknowledge the caregiver's presence may have influenced the young adult's answers. No one on the research team is autistic (the first author has a neurodevelopmental disability), and the authors note this as a limitation. The study is a refinement of one existing measure (HRI), not a test of an intervention, so it does not show that any particular support strategy works.
Declared interests
The authors declare no conflict of interest and state the research received no specific grant from any public, commercial, or not-for-profit funding agency.
The easy way to misread this
Do not read these themes as a universal description of what all autistic young adults need from their healthcare team. The study interviewed 14 verbal, mostly white young adults with self-reported diagnoses, and the authors state the findings are not generalizable. It is a refinement of one readiness measure, not a validated tool or a treatment protocol.
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