Effects of a parent advocacy intervention on service access for transition-aged autistic youth: a multisite randomized controlled trial.

Researchers tested whether teaching parents better advocacy skills would help their autistic young adults get more services. They compared families who took an advocacy class (ASSIST) with families who received written information about services. Overall, the advocacy class didn't lead to more services. However, for families whose children had already finished high school, the advocacy class did help them access more government-funded programs.

The study suggests that some families might benefit from advocacy training while others may do just as well with good written information.

This multisite randomized controlled trial evaluated the ASSIST intervention, designed to improve parents' advocacy skills for accessing adult services for autistic youth transitioning to adulthood. 185 parents were randomly assigned to receive either the ASSIST intervention or comprehensive written information about adult services. The study measured service access at baseline, 6 months, and 12 months post-intervention. Primary analyses found no significant treatment effects on overall service access. However, subgroup analyses revealed that among families whose autistic youth had already exited high school, those in the treatment group accessed more government-funded service programs at 6 months compared to controls.

The findings suggest the intervention may benefit specific subgroups but overall effectiveness remains unclear.

Results suggest parent advocacy interventions may need to be tailored based on family circumstances and timing relative to school completion. Clinicians should consider individual family capacity to utilize written resources before recommending intensive advocacy training. Further research is needed to identify families most likely to benefit from structured advocacy interventions.

The study does not identify which families can effectively use written information versus those needing more intensive support. Subgroup analyses were exploratory and may have limited generalizability. The study focused only on parental reports of service access without objective verification of service utilization.

Autistic youth in the United States face many challenges accessing services as they transition to adulthood. Improving parents' ability to advocate for services is a promising way to improve service access. The current study tested whether participation in an intervention to improve parents' ability to advocate for adult services (called Advocating for Supports to Improve Service Transitions or ASSIST) led to increased service access for their transition-aged autistic youth. Using a multisite, single-blind parallel-group design, we randomized 185 parents of transition-aged autistic youth to either a treatment condition that received the ASSIST intervention, or a control condition that received comprehensive written information about adult services.

Primary outcomes for this report - number of government programs that fund services and direct services received by the youth - were collected via parental interview at baseline, six, and 12 months after intervention. Primary analyses found no significant treatment effects on service access. Subgroup analyses, however, detected treatment effects for families of youth who had exited high school prior to their families taking ASSIST. Among those families, youth from the treatment group were receiving more government programs that fund services at 6 months after intervention compared with youth from the control group.

We cannot conclude from our findings that ASSIST improved access to services, though there was some evidence to suggest increased access to government programs that fund services for families of autistic youth who had exited high school. Future research should investigate which families can translate written information about adult services (i.e. the control condition) into improved service access, and which families need more individualized support beyond a group-based class to see improvements in service access.