Exploring adolescent and parent perspectives on facilitating health self-management in adolescents with autism spectrum disorder

Abstract

Background

As many as 95% of individuals across the lifespan with autism spectrum disorder (ASD) have at least one comorbidity. While research focused only on the health of autistic adolescents is limited, we do know that fewer than 14% of these youth receive appropriate transition services to self-manage their health. These limitations have resulted in poor outcomes and premature mortality. Little is known about how parents and their adolescent children address this health burden.

Objective

The objective of this study is twofold. First to compare the perceptions of adolescents with ASD and their parents regarding adolescents’ contextual and process variables (depressive symptoms, health knowledge, health communication/planning, self-efficacy, self-determination) and health self-management (HSM) behavior. The second is to examine social facilitation for HSM behaviors in adolescents with ASD and their parents.

Methods

In this community-based study, an online survey was used to compare the perspectives of 40 adolescents with ASD aged 12 to 22 years and their parents on the adolescents’ HSM behaviors. Contextual and process variable measures (PROMISE, Star_x, General Self-efficacy Scale, AIR Self-determination Scale, Social Facilitation Questionnaire) were completed by both adolescents (adolescent/pediatric version) and parents (parent version).

Results

Descriptive analysis indicated that parents were teaching self-management to adolescents for monitoring and preventing illness, including medication knowledge and how to talk to their doctor. The largest differences were found between parents’ and adolescents’ perceptions regarding teaching and learning about independent management of existing health conditions. Additionally, adolescents rated their self-efficacy (t (38) = 3.62, p < .001) and self-determination (t (39) = 4.55, p < .001) significantly higher than their parents did.

Conclusions

This study contributes perspectives on what parents and adolescents are doing to enhance adolescents’ health self-management. Adolescence is a developmental period of social facilitation when parents may teach their adolescent children with ASD to self-manage their health and when those adolescents may learn to do so. During this period, providers should offer adequate planning and guided training to support parents and their adolescent children with ASD to improve adolescents’ self-management behaviors and improve health outcomes for this vulnerable population.