“Becoming an Adult Is a Big Step for Me”: Youth and Caregiver Perspectives on Coping with the Challenges of Transitioning to Adulthood with Autism

Background and Purpose

The transition into adulthood can be particularly challenging for youth with Autism Spectrum Disorder (ASD) and their caregivers. Previous research has provided important insight into the challenges and stressors of raising a child with ASD from caregiver perspectives. However, there is a lack of research examining the perspectives of youth with ASD and their caregivers when youth transition to adulthood. This study helps to fill this gap in research by examining how youth with ASD and their caregivers cope with challenges experienced during this critical time period.

Methods

Using a qualitative research design, we conducted four focus groups with youth with ASD (n=13) and their caregivers (n=19). Youth participants ranged from 15 to 22 years in age and were primarily male (n=11), while the caregiver participants were primarily female (n=17). Participants were recruited through study fliers posted at several clinics that serve youth with ASD, located in both urban and rural areas in a state in the Midwest. Study flyers were also mailed to addresses from the clinics’ list servers. Semi-structured focus group questions were used to explore the youth and caregivers’ perspectives on the youths’ transition from adolescence to adulthood. The questions were similar for both youth and caregiver focus groups. Audio recordings from the focus groups discussions were transcribed verbatim and coded thematically using NVivo qualitative software guided by principles of grounded theory.

Findings

Major themes that emerged from the youth discussions include: a.) difficulties with transitions and managing multiple responsibilities; b.) accessing supportive services from professionals; and c.) receiving support from family members. Major themes that emerged from the caregiver discussions include: a.) encountering a lack of services for youth after high school; b.) mobilizing informal and formal support for youth; and c.) advocating for youth.

Conclusions and Implications

These findings provide insight into youth and caregivers’ perceptions of the challenges they face when youth transition to adulthood, along with the coping strategies and resources they have found helpful. This information is integral to the design of future programs, services, and policies supporting transition-aged youth with ASD and their caregivers.