Health self-management for adolescents with autism spectrum disorder

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition with differences in communication, social, and behavioral abilities diagnosed in 1 in 54 youth in the United States. Upwards of 95% of individuals with ASD have at least one co-occurring health condition, which may lead to early mortality in this population. Additionally, less than 14% of adolescents with ASD receive guided health transition services aimed to teach youth to self-manage their health throughout life. The gap in health transition services has left many parents with this responsibility. Therefore, given the dearth of research examining transition of health responsibility from parent to adolescent with ASD this study had three specific aims: to explore factors associated with adolescent health self-management (HSM) behavior, compare differences in parent and adolescent perspective, and examine the nature of social facilitation between parent and adolescent that contribute to HSM behavior. Forty adolescents with ASD and parent dyads completed the online survey. Guided by the new Adolescent Health Self-Management (AHSM) Model, results of this descriptive correlational study found many adolescents with ASD were receiving some form of transitional support from parents and report engaging in HSM behavior regardless of receiving guided transition services. However, gaps in health transition may exist during parent and adolescent social facilitation regarding health promoting activities (monitoring health and emotions) and managing existing health conditions (scheduling appointments, managing medications, completing a treatment regiment, etc.). Many conceptual relationships were well explained by the AHSM model in this study. Hierarchical regression analysis found contextual domain variables (parents’ marital status, executive function deficits, age at ASD diagnosis) and process domain variables (health knowledge and self-efficacy) explained 43% of the variance in adolescent HSM behavior in this sample. Furthermore, differences in adolescent and parent perspective of beliefs and abilities further reinforce the need for family-centered and coordinated health transition guidance. This is the first known study to examine HSM behavior for adolescents with ASD. Findings of the study suggest many implications addressing practice, research, and policy alike.