A new paper published in the Journal of Child Psychology and Psychiatry outlines a multi-site randomized controlled trial led by Vanderbilt Kennedy Center investigators Julie Lounds Taylor, Ph.D., and Meghan Burke, Ph.D. Working with colleagues from the University of Wisconsin–Madison and the University of Illinois-Urbana-Champaign, the project tested whether a parent-focused advocacy intervention – Advocating for Supports to Improve Service Transitions (ASSIST) – could improve service access for transition-aged autistic youth.
Julie Lounds Taylor, Ph.D.
“The transition from high school to adulthood is a critical and often challenging time for autistic youth,” said Taylor. “Many face barriers in employment, postsecondary education, independent living, and mental health. Accessing adult disability services can help address these challenges, yet these services are often complex, fragmented, and difficult to obtain once a young person leaves high school.”
ASSIST is a 12-week, group-based program designed to help parents navigate the adult disability service system. The program includes both nationally relevant content and state-specific guidance on topics such as legal protections, income support, employment, housing, and community participation. In this study, parents in the treatment group attended the sessions, while those in the control group received the same written materials but no live instruction or discussion.
The trial enrolled 185 parents of autistic youth aged 16–26 across Illinois, Tennessee, and Wisconsin. About 60 percent of the youth were still in high school, and roughly 40 percent had an intellectual disability. Families were randomly assigned to the ASSIST program or the information-only control group. For this report, the outcome was the number of services that the autistic youth received, measured at baseline, six months, and 12 months post-intervention.
“Though we did not find differences in services after intervention between the two groups overall, there was an intervention effect among families of youth who had already exited high school when their parents took the ASSIST class,” said Taylor. “Among these families, those in the ASSIST group were receiving more adult service-related government programs (e.g., Medicaid waiver, Supplemental Security Income or SSI) six months after taking the intervention than the information-only control group.”
Additionally, Taylor reports that both treatment and control participants had gains in accessing government programs over time, suggesting that written information alone may also help some families improve service access.
Participants reported finding the intervention extremely helpful.
“Transitioning from childhood to adulthood is very scary. I was afraid I would mess it up and he would be put on a wrong list and not get the services he needed in 40 years because I had messed it up,” one parent said. “But now I have more confidence knowing that there are ways to get what you need even if the path isn’t linear. There are ways to appeal, to get to the answers through a different path.”
“I have applied for services because of the intervention,” said another parent. “Before I did not understand the differences, so it helped me differentiate. I have a better understanding of what different agencies do.”
Taylor noted that the intervention was delivered during the height of the COVID-19 pandemic. Government offices were closed, and service delivery was disrupted, which likely influenced both program delivery and service access outcomes. The researchers posit that results might look different in more typical times.
“ASSIST may be particularly beneficial for families of autistic youth who have already left high school, when eligibility for many adult programs begins,” said Taylor. “The findings also suggest that some families can leverage written resources alone, while others may need the additional engagement of a structured, interactive program. Future research should identify which families benefit most from each approach and explore ways to ensure that securing funding through government programs leads to actual receipt of needed services.”
Open access article:
Taylor, J.L., DaWalt, L.S., Burke, M.M., Xu, M. and Slaughter, J.C. (2025), Effects of a parent advocacy intervention on service access for transition-aged autistic youth: a multisite randomized controlled trial. J Child Psychol Psychiatr. https://doi.org/10.1111/jcpp.70036
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