A mixed-methods study of autistic adults' healthcare independence over time.
Autistic young adults say they grow more healthcare-independent over a year, but caregivers don’t see it—so always collect self-ratings.
01Research in Context
What this study did
Gilmore et al. (2023) followed autistic young adults at one autism-friendly clinic for a year. They asked clients and caregivers the same questions about healthcare independence every few months.
The team used mixed methods. They counted survey scores and held open-ended interviews to hear personal stories.
What they found
Young adults said they got better at making appointments, filling scripts, and talking to doctors. Caregivers noticed almost no change.
The gap stayed wide the whole year. Self-ratings crept up; proxy-ratings stayed flat.
How this fits with other research
Andrés-Gárriz et al. (2025) ran a program to boost self-determination. Their autistic clients also felt small gains, while staff saw little shift. Together the papers show self-view and other-view often diverge.
Nishith et al. (2025) looked at autistic adults who also report ADHD symptoms. That group said daily independence fell, not rose. The clash makes sense: Shruti’s sample had extra executive-load from ADHD; Gilmore’s clinic screened for stable clients without added conditions.
Orsmond et al. (2025) tracked high-school leavers and found depression, not autism traits, best predicted later independence. Gilmore’s positive trend may hinge on keeping mood problems low, a detail the clinic should monitor.
Why it matters
If you serve autistic adults, ask them directly about progress. Caregiver forms can miss real growth. Use simple rating scales at every visit and graph the client’s own line. When it stalls, check for depression or ADHD symptoms before tweaking goals.
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02At a glance
03Original abstract
Healthcare independence refers to an individual’s ability to participate in and manage their healthcare by using specific skills like communicating with providers and scheduling appointments. Understanding healthcare independence among autistic young adults is important to designing healthcare systems that provide equitable support for autistic people throughout their lives. To quantify changes in autistic adults’ healthcare independence over time and understand factors associated with change in healthcare independence. We administered a measure of healthcare skills, the Transition Readiness Assessment Questionnaire (TRAQ), to n = 27 autistic young adults who provided a self-report, and n = 21 autistic young adults who participated via proxy-report by supporters, at one autism-specialized primary care clinic. Participants completed the TRAQ at baseline, six months, and 12 months. We used repeated measures generalized linear mixed models to quantify changes in healthcare independence over time, controlling for demographic factors, executive functioning, restrictive and repetitive behaviors, and number of clinic visits. To understand factors associated with change in healthcare independence, we completed follow-up semi-structured interviews with n = 6 autistic young adults and n = 5 supporters of autistic young adults. Autistic young adults who participated via self-report showed statistically significantly increases in healthcare independence between baseline and 12 months and between six months and 12 months, and significant increases on most TRAQ subdomains over time (e.g., appointment keeping, managing medications). Autistic young adults who participated via proxy-report showed no significant changes in healthcare independence over time, and significant improvement on the management of activities subdomain between baseline and 12 months. Changes in healthcare independence were associated with interactions with providers, individual health changes, consistent support needs, and community resources. At one autism-specialized primary care clinic, some autistic young adults may demonstrate improvements in healthcare independence, but other autistic young adults may require additional support strategies to increase healthcare independence. Future studies among larger samples are needed to obtain generalizable understanding of healthcare independence for autistic adults.
Health Care Transitions, 2023 · doi:10.1016/j.hctj.2023.100029