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.