"I'm Not Trying to Be Difficult When I Can't Do Things": A Mixed Methods Look at Transitioning from Pediatric to...

Although autistic individuals can require more health care services than the general population, the care they receive is often suboptimal. During young adulthood, autistic patients face additional developmental barriers and achieve poorer medical outcomes as they transition between pediatric and adult health systems. However, little is known about their transition needs, perceptions, and experiences.

This study examined the health care experiences and transition perceptions of 213 autistic young adults aged 18-26 years (mean age 22.72). Both formally diagnosed and self-identified autistic individuals participated in the study. Our research team used mixed methods online survey, including an original health care experience questionnaire, an adapted measure of health care transition readiness, and short-answer questions. We used nonparametric statistical tests to examine relationships between quantitative variables, and qualitative responses were analyzed using an inductive, open-coding approach.

Quantitative analyses revealed health care environments to be least accessible for individuals who are female or gender nonconforming, nonspeaking, and/or in their late teenage years. These individuals also showed lower levels of involvement in their own care compared with other subgroups. Conversely, those with a history of regular medication management reported higher levels of readiness for health care transition. Open-ended survey responses clustered around the following five themes: (1) deciding whether to disclose an autism diagnosis, (2) medical staff's current understanding of autism, (3) discrimination, (4) communication challenges, and (5) unique needs.

Participants in this study preferred to be actively involved in their health care and required supportive, knowledgeable providers and inclusive environments to accomplish this goal. Noting this, it is important for health care providers to assess individual needs and preferences and design focused supports for autistic patients transitioning from pediatric to adult care.