Caregivers’ perspectives on health-care transition in autism

Abstract

Purpose Adults with autism spectrum disorder (ASD) experience significant health-care disparities across physical and mental health domains resulting in poorer health and quality of life. Poor transitions to adult care negatively impact the health of adults with ASD. Current research focuses on personal factors in research samples that lack diversity. The purpose of this study is to examine the lived health-care experiences of geographically and ethnically diverse young adults with ASD in adult care settings in the USA to understand provider and system-level factors affecting their health. Design/methodology/approach Nine caregivers of young adults with ASD participated in key informant interviews describing their experiences in navigating the health-care system. Data were analyzed using a grounded theory approach. Findings The data indicated that limited quantity of services, poor quality of services, and high cost of services had a negative effect on the health of adults with ASD. Issues cascaded to become more complex. Practical implications Practical implications for payors, providers, persons with ASD and their families are discussed in this paper. Originality/value To the best of the authors’ knowledge, this study answers the call to better understand system-level factors affecting the health of geographically and ethnically diverse people with ASD.