A mixed-methods study of autistic adults’ healthcare independence over time

Background: 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. Objective: To quantify changes in autistic adults’ healthcare independence over time and understand factors associated with change in healthcare independence. Methods: 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. Results: 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. Conclusions: 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.