The Road to Adulthood: The Concerns and Expectations of Parents of Adolescents with ASD

Background: The transition to adulthood typically involves tasks such as graduating from high school, participating in postsecondary education, obtaining employment, living independently, and developing meaningful social relationships (Wehman, 2006). Adolescents with ASD often struggle with the developmental tasks of young adulthood due to autism symptomatology, adaptive behavior deficits, and limited postsecondary education and employment opportunities (Hendricks & Wehman, 2009; Seltzer, et al., 2004). More information about needs and difficulties during this developmental period is required to facilitate successful transitions and improve adult outcomes.

Objectives: The objectives of the current study were to (1) examine transition-related concerns and social concerns in parents of adolescents with ASD; (2) assess parental expectations in regards to their children’s employment, education, and independent living; and (3) survey what services parents are currently using and what services they anticipate utilizing in the future.

Methods: Eighty-seven parents of adolescents with ASD completed the Adolescent Transition Survey (ATS; Duncan, under development) and the Vineland Adaptive Behavior Scales, Caregiver Survey. The ATS asks parents about the concerns, needs, and expectations in transition-related areas. Adolescents with ASD ranged in age from 13-17 years (M = 182.2 months). Diagnoses of ASD were confirmed by examining the adolescent’s electronic medical record.

Results: The average Vineland Adaptive Behavior Composite Score was in the Low range (M = 66.8) and Communication, Socialization, and Daily Living Skills score were also in the Moderately Low to Low range. When asked about general transition concerns, parents reported that they were very or moderately concerned about social skills and social support (75.9%), money management (71.3%), problem solving skills (69.0%), vocational issues (69.0%), decision making and goal setting (69.0%), and future planning (67.8%). While approximately half of parents expected their adolescent to pursue postsecondary education or receive job training, 28% of families were uncertain about their adolescent’s education or vocational future. In regards to vocational supports, 78% of parents reported that their adolescent would need assistance finding a job and 53% expected their adolescent to need ongoing support to perform the job.

Preliminary analyses on the qualitative data from the open-ended questions on the ATS revealed that many families believe that their adolescent will achieve an outcome in adulthood that involves residential independence, postsecondary education, and/ or employment. However, parents also reported that there are many barriers to a successful post-school outcome including lack of resources at school and in the community to teach relevant job skills, develop social skills with peers and adults, and build critical independent living skills. Further analyses will be conducted on the qualitative data from the ATS to identify themes related to current parental concerns, knowledge of the transition process, future expectations, service utilization, and potential barriers to a successful transition.

Conclusions:   The findings suggest that parents of adolescents with ASD have significant transition-related concerns. Gathering detailed information from parents can help highlight areas that could be targeted in interventions to empower families and build skills in adolescents with ASD.