Effects of a Parent-Training Intervention on Service Access and Employment for Youth with ASD

Background:  When youth with autism spectrum disorder (ASD) leave high school, they encounter an adult service system that is underfunded and difficult to navigate; this serves as a significant barrier to accessing appropriate services and support. In response, our group developed the Volunteer Advocacy Program-Transition (VAP-T), which equips parents to more effectively navigate the adult service system on behalf of their son/daughter with ASD. In initial findings from a small randomized controlled trial (RCT), we found that relative to control group parents, those who participated in the VAP-T knew more about adult services, and felt more empowered and skilled in advocating. It is unclear, however, whether increased parental knowledge/empowerment leads to improved transition outcomes for youth.

Objectives:  To test whether parent participation in the VAP-T led to increased service access and higher rates of community employment/post-secondary education (PSE) for transition-aged youth with ASD.

Methods: We examined the efficacy of the VAP-T using an RCT, waiting-list control design with families of youth with ASD who were within 2 years of high school exit. After completing pre-test measures, families were randomly assigned to the intervention group or a wait-list control. Parents in the intervention group met weekly for 12 weeks; each session lasted 2.5 hours. Sessions covered aspects of the adult service system (e.g., Vocational Rehabilitation, post-secondary education programs, SSI, SSDI) and advocacy skills. All youth had ASD diagnoses confirmed using the Autism Diagnostic Observation Schedule-2 administered by research-reliable clinicians.

38 families (19 treatment, 19 control) have completed the 6-month follow-up thus far. At this time, 55% of youth were in high school and 45% had exited. The sample of youth was 18% female, and 32% had an intellectual disability. Outcomes, measured six months after the intervention group completed the VAP-T, included the number of services youth were receiving and whether youth were currently working in the community or in a PSE program.

Results: Youth with ASD whose parents were in the treatment group were more than twice as likely as the control group to be working in the community or in PSE (47% vs. 21%), Fisher’s Exact Test p-value = .09. Group effects were more pronounced for those out of school; 86% of treatment group youth who had exited high school were working in the community or in PSE, compared to 30% of control group youth, Fisher’s Exact Test p-value = .04. Relative to the control group, treatment group participants may be receiving more services (3.60 vs. 3.00), although the difference was not statistically significant. Further analyses will examine whether intervention effects on service access depend on high school exit (in/out of high school) or whether the youth has an intellectual disability.

Conclusions:  Training parents how to navigate the adult service system may lead to higher rates of employment/PSE participation for youth with ASD, and perhaps to better service access. Discussion will highlight the importance of intervening at the level of the family, when working to strengthen environmental supports for youth with ASD during the transition to adulthood.