Barriers to Receipt of Services for Young Adults With Autism

Abstract

OBJECTIVES: In this study, we examine experiences of families of young adults (YAs) on the autism spectrum to better understand dynamics leading to poor YA outcomes. METHODS: Twenty parents of YAs with autism spectrum disorder (ASD) who had completed high school in the past 15 years took part in a 90-minute interview. They described their YA’s experiences at the transition from high school and current status with regards to services or postsecondary education. Qualitative interviews were digitally recorded, transcribed, and analyzed by using the constant comparative method associated with a grounded theory approach. RESULTS: Few adults with ASD were receiving autism-specific assistance no matter their level of cognitive functioning. Existing systems, such as service agencies and college disability support offices, had seldom been designed to meet their needs. Some families gave up on services, some used self-directed services they had to manage themselves, and others paid out of pocket for services they could access no other way. Inadequate services often led to YA failure and worsening of symptoms. The majority of families bore the financial and emotional brunt of finding or creating services and community experiences to meet their adult child’s needs. CONCLUSIONS: Parent narratives highlight the difficulties that are faced as families attempt to access appropriate services for YAs on the autism spectrum at all levels of functioning. These insights can help pediatricians understand family concerns and develop anticipatory guidance strategies. More research is needed to identify potential solutions to challenges faced by specific subgroups of YAs with ASD.