Health care transition for autistic adolescents and young adults: A pilot rural and urban comparison survey study
Authors: Zhang E , Snyder Makenna , Alduraidi Wafaa , Kaiser Ezra , Hunley Spencer , Wright Lacy , Swinburne Romine Rebecca , Nelson Eve-Lynn , Cheak-Zamora Nancy 
Published: December 2024

Autistic adolescents and young adults in rural areas often experience more unmet medical needs than their urban peers, particularly during the health care transition, the process of moving from pediatric to adult health care. This study aimed to understand the health care transition experiences of autistic adolescents and young adults (14–25 years old) across rural and urban settings through a structured survey assessing demographics, health care transition experiences, and future health care decision-making planning. Of 180 participants (urban: 96; rural: 84), the average age was 19.67 years. Slightly over half (53.3%) reported completing health care transition at an average age of 18.02 years. Only 40 participants had health care transition discussions with their doctors, typically starting at 17.78 years. Regarding future medical decision-making, autistic adolescents and young adults who completed the survey independently had significantly higher odds of anticipating future independent medical decision-making compared to those who had parental assistance in survey completion (odds ratio = 6.601, 95% confidence interval: 2.857–15.250, p < .001). These results emphasize the need for enhanced health care transition support for autistic adolescents and young adults, suggesting that health care transition should be integrated into broader transition planning, and tailored interventions should be developed to improve health care transition outcomes for adolescents and young adults, their caregivers, and providers.

Lay abstract

Autistic adolescents and young adults in rural areas face significant challenges in health care transition compared to their urban counterparts. Health care transition, the process of moving from pediatric to adult health care, is crucial for the long-term health outcomes of adolescents and young adults. Previous research indicates rural adolescents and young adults often have greater unmet medical and financial needs, affecting their transition experiences, but there was no study focusing on rural autistic adolescents and young adults’ health care transition experiences. This pilot study provides a comparative analysis of the health care transition experiences of rural and urban autistic adolescents and young adults. Ninety-six urban and 84 rural participants (14–25 years old) participated in the study. Their average age was 19.67 years. Just over half of the participants had completed the transition to adult care, typically reporting finishing this process at around 18 years old. A majority had limited discussions with their doctors about transitioning, and those who had discussions often started these conversations late. It also reveals that the responses completed by or with parents of autistic adolescents and young adults tend to indicate that the adolescents and young adults would not make future medical decisions or are uncertain about it. The findings underscore the necessity for targeted support for autistic adolescents and young adults during their health care transition process, regardless of their residence. There is a clear need for targeted health care transition interventions for adolescents and young adults, parents, and health care providers to ensure autistic adolescents and young adults and their families receive adequate support during the health care transition process.