“He's not ready for the world and the world is not ready for him”: Parents and youth perspectives on the challenges of transitioning to adulthood with autism

Although all adolescents experience obstacles while transitioning into adulthood, youth with autism spectrum disorder (ASD) face endless difficulties. Given the lack of data on transitioning, we conducted focus groups with youth with ASD and their parents, to better understand needs and barriers. Giving youth and their parents an opportunity to share their experiences is essential to providing services responsive to their needs. Participants were recruited from urban/rural counties in Missouri. Using a semi-structured interview guide, we conducted two parent and two youth focus groups concentrating on preparation, challenges, and transition services. Data were transcribed verbatim, entered into a qualitative software analysis program, and analyzed for key themes, using content analysis strategies.

Parents (n=19) were primarily female (n=17) residing with youth. Youth (n=13) predominately male (n=11) ranged in age from 15 – 22 years. Parents and youth expressed challenges in five major areas: health, independent living, social skills, employment, and education. Parents voiced concerns for their child's future, and were overwhelmed by having to provide and coordinate services themselves. Youth expressed anxiety and uncertainly about their futures, along with a need for services to help establish safe and enjoyable living, working and education routines.

Families and youth are in dire need of transition services to aid in skill development and produce meaningful changes sustainable into adulthood. Parents wanted “one-stop shops” to meet health and social needs and community based allies to provide services and information. Both parents and youth need mental health support to guide youth's successful transition into adulthood.