Exploration and Comparison of Adolescents With Autism Spectrum Disorder and Their Caregiver's Perspectives on Transitioning to Adult Health Care and Adulthood

• Published in: Journal of pediatric psychology Vol. 42; no. 9; pp. 1028 - 1039
• Main Authors: Cheak-Zamora, Nancy C, Teti, Michelle, Maurer-Batjer, Anna, Koegler, Erica
• Format: Journal Article
• Language: English
• Published: United States 01.10.2017
• Subjects: Adaptation, Psychological; Adolescent; Autism Spectrum Disorder - psychology; Autism Spectrum Disorder - therapy; Caregivers - psychology; Female; Focus Groups; Humans; Male; Qualitative Research; Self Efficacy; Social Support; Transition to Adult Care; Young Adult; autism spectrum; parent–adolescent communication; adolescents; health care services; qualitative methods; parents
• ISSN: 0146-8693; 1465-735X
• DOI: 10.1093/jpepsy/jsx075

Adolescents with autism spectrum disorder (ASD) experience challenges achieving independence. Few studies assess both adolescents and caregivers' needs as adolescents transition to adult health care. This study explored and compared the health-related independence experiences of 27 adolescents with ASD and their caregivers. Caregivers participated in focus groups and adolescents participated in semi-structured interviews. Thematic analysis of dyads' responses highlighted three common themes: (a) efforts toward independence, (b) low self-efficacy for adolescents' independence, and (c) desire for independence. Nuances in responses indicated that although members of dyads shared many experiences, they were not communicating these experiences with each other. Results suggest both groups understand the importance of health-related independence and are motivated to achieve independence but lack skills and supports. Improved communication about experiences and goals between caregivers, adolescents, and the care team are needed. These findings can inform future interventions to better support adolescents' transition to adult health care.