Ecological Approaches to Transition Interventions in ASD: Training Parents to More Effectively Navigate the Adult Service System

Background: Although there is an increasing body of descriptive and intervention work that aims to improve the transition to adulthood for youth with autism spectrum disorders (ASD), most studies focus on characteristics of the youth themselves. Yet, the ecological contexts in which these youth are found also play critical roles in transition outcomes. In this study, we report initial findings from a small randomized-controlled trial (RCT) that intervenes at the level of the family, by training parents how to more effectively interface with the adult service system.

Objectives: The study’s goal was to test whether, for parents of transition-aged youth with ASD, participating in a parent advocacy intervention led to increased knowledge about the adult service system; greater feelings of empowerment; increased advocacy skills; and increased connectedness with the disability community.

Methods: This study has two phases. In Phase 1, we recruited seven families of transition-aged youth with ASD, who participated in a pre-pilot of the 12-week parent advocacy intervention. In Phase 2, we examined the intervention using an RCT, waiting-list control design with 45 families of transition-aged youth with ASD. Families were randomly assigned to either the intervention group (Fall 2015) or a wait-list control (who will receive the intervention in Spring 2017). Participant characteristics are presented in Table 1.  In Phase 2, the intervention was delivered in three locations: in person in Nashville, TN, and via webcast in Chattanooga and in Memphis. All youth had ASD diagnoses confirmed using the Autism Diagnostic Observation Schedule-2 administered by research-reliable clinicians.

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. Primary outcomes, measured before and after the intervention, included knowledge about the adult service system; advocacy skills and comfort, family empowerment, and connectedness to the disability community.

Results: In Phase 1, six of seven families provided data. After taking the intervention, parents reported increased advocacy skills/knowledge, paired t(5)=-6.52, p<.001, connectedness to the disability community, paired t(5)=-3.05, p<.05, and knowledge of the adult disability service system, paired t(5)=-2.08, p=.09. No significant changes occurred in family empowerment. 

For Phase 2, pre-test data collection has now been completed, with post-test data collected in December 2015/January 2016. Beyond examining changes in primary outcomes for the treatment vs. control group, we will also explore potential moderators of treatment response, including characteristics of offspring (intellectual disability vs. no intellectual disability), training (in person vs. via webcast), and family (high vs. low parent stress).

Conclusions: From initial findings, it appears that participating in the parent advocacy training can improve parents’ ability to advocate for adult services for their son/daughter with ASD. In future analyses, we will examine whether improving parents’ capacity to advocate also changes “broader” transition outcomes (e.g., employment, community integration) – and, if not, which barriers might be in place. More generally, discussion will highlight the continued role of the family in the lives of individuals with ASD across the lifespan.