Empowering parents: A path to improved services and outcomes for youth with autism

The transition from adolescence to adulthood is a pivotal and often challenging period for both individuals on the autism spectrum and their families. Accessing appropriate services during this transition can be a daunting task, so with the goal of improving transition outcomes, researchers at the Vanderbilt Kennedy Center (VKC)* developed and tested a 12-week advocacy training program named Advocating for SupportS to Improve Service Transition (ASSIST). Findings were recently published in Autism Research**.

The ASSIST study was conducted across three U.S. states, involving 185 parents who were randomly assigned to one of two groups. The treatment group participated in the 12-week, facilitator-led program alongside other families, while the control group received the same written materials but did not participate in the program. (This group would have the opportunity to take part in the live training a year later.)

The ASSIST program consisted of 12 two-hour training sessions led by a program facilitator with experience in adult services and in leading groups. Each session focused on a different aspect of adult services and supports, including person-centered planning, models of decision making, supplemental security income, social security disability insurance, health insurance, Medicaid waiver, employment, post-secondary education, housing, special needs trusts, and advocacy. Throughout the 12 weeks, participants provided feedback.

Headshot of Julie Lounds Taylor, Ph.D.

Julie Lounds Taylor, Ph.D.

“The results at the end of the 12 weeks were illuminating,” said Julie Lounds Taylor, Ph.D., associate professor of Pediatrics and Psychiatry & Behavioral Sciences and co-director of the VKC UCEDD.  “After completing the program, parents in the treatment group demonstrated significant gains in two key areas. First, they showed a substantial increase in their understanding of the adult services available to their sons and daughters with autism. This is essential for navigating the complex service landscape and ensuring that the youth receive the appropriate resources. The second key area of improvement is that the parents who underwent the advocacy training felt more confident in their ability to advocate effectively. Building these advocacy skills can be invaluable in ensuring that the unique needs and goals of youth with autism are met.”

Notably, the study also found that the benefits of the ASSIST program were most pronounced for parents who faced greater challenges in advocating for their sons and daughters with autism. Parents who began with less knowledge, lower perceived advocacy skills, and less active coping styles experienced the most significant improvements after participating in the program. This highlights the program’s potential to be particularly effective for those who need it the most.

Meghan Burke, Ph.D., BCBA-D

Meghan Burke, Ph.D., BCBA-D

“While our findings are undoubtedly promising, they also raise an important question for future research,” said Meghan Burke, Ph.D., BCBA-D., professor of Special Education and a member of the VKC. “Can improved parent advocacy ability lead to better service access and post-school outcomes? We need to delve deeper into the connection between enhanced parent advocacy and the real-world impact on service access and overall outcomes. Another next step of the project is testing an adapted version of ASSIST with Latino, Spanish-speaking families of transition-aged youth with autism.”

Drs. Taylor and Burke presented ASSIST findings on Oct. 24 as part of the VKC’s Conversations in IDD Research series. A recording of the webinar will be available on the VKC website the week of Oct. 30.

*Research was conducted at the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities in partnership with the University of Illinois Urbana-Champaign and the Waisman Center, University of Wisconsin-Madison.

**Taylor, Julie & DaWalt, Leann & Burke, Meghan & Slaughter, James & Xu, Meng. (2023). Improving parents’ ability to advocate for services for youth with autism: A randomized clinical trial. Autism research: official journal of the International Society for Autism Research. 10.1002/aur.3001.

Top photo by Getty Images

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This is a monthly email of Vanderbilt Kennedy Center Notables published by the Communications staff of the Vanderbilt Kennedy Center. Between issues of Notables, you can stay up to date on the latest Vanderbilt Kennedy Center news, information, and resources via the Vanderbilt Kennedy Center’s Facebook page.