It’s no secret that disability services become more challenging to navigate by the time an adolescent with autism spectrum disorder (ASD) enters adulthood. Pediatrics associate professor and VKC Investigator Julie Lounds Taylor, Ph.D., is studying the effectiveness of a 12-week parent advocacy program designed to improve the transition to adulthood for youth on the autism spectrum.
“The years immediately after high school exit are such a critical time period that either makes or breaks a successful transition to adulthood,” Taylor said. “If they don’t go well, social isolation and disengagement from postsecondary education or work can persist throughout adulthood. Despite the need to better support youth with ASD during this time, few interventions have been developed and even fewer tested.
“When we spoke to youth and their parents during our earlier studies, it quickly became clear that families were having an incredibly difficult time accessing the services and supports that could assist their son or daughter in maximizing his/her independence in adulthood,” Taylor continued. “And the unavailability of adult services due to under-funding was only one of the issues. The adult service system is incredibly difficult to navigate, and families are left on their own to try to put it all together. We wanted to try to help with that, by developing a program to assist families in understanding the adult services system and accessing services and supports.”
Taylor and her team began this work with a small randomized controlled trial of 45 families in Tennessee who had a child on the verge of graduating high school.
The original project, called the Volunteer Advocacy Program-Transition or VAP-T, recruited families of youth with an autism diagnosis who were up to two years before or after high school exit. Those in the waitlist control group had the opportunity to take the VAP-T program after a waiting period. Those families in the active study group went through the VAP-T training program and were followed by researchers for one year.
After the follow-up period concluded, findings showed that youths whose parents participated in VAP-T were more likely to be employed or in postsecondary education, and that they received more school-based and adult services.
Changes will be coming with the continuation of this study, including modifying the program to be used in other states. This nationally-relevant program will have a new name: Advocating for SupportS to Improve Service Transitions, or ASSIST. The project will continue with a large randomized controlled trial across one ASSIST project site each in Nashville and Chicago, and two in Wisconsin.
“In the new study, we will be recruiting families of youth on the autism spectrum with a wider age range, between 16-26 years,” said Taylor. “And this time, our control group will have access to all of the written materials that the treatment group gets as part of the ASSIST program,” she added. “After a waiting period, everyone in the control group will also have the opportunity to take the full ASSIST program. This allows us to test the interesting – and important – question of whether participating in a 12-week program provides benefit to families above and beyond providing them with written materials. It also allows us to provide resources to families who are in the control group while they are waiting to take the full ASSIST program.”
Participation in the VAP-T program has shown itself to be beneficial both for the youth with ASD and for the parents themselves, who had a rare opportunity to spend time with fellow families of young adult offspring with ASD on a regular basis and form relationships with them.
“The value to families of meeting with other families in a group format was something that we weren’t necessarily expecting,” Taylor said. “At every phase of the project, we carefully think about the best way to deliver the program. Although we always feel a push to disseminate the program online so families who are unable to attend a group can access the information, we have a lot of data telling us that the group format is really important. In our pilot work, we compared families who accessed more of the content online versus in a group format. Parents learned the same amount of information about adult services either way, but families felt more empowered to use the information they learned if they were present for more of the in-person sessions.
“We have had many occasions where families told us that they would like to keep meeting – formally or informally – after the sessions have ended. In our first group, families were planning on getting together after the VAP-T was over for a pool party!”
Enrollment for the next phase of the ASSIST program study is expected to begin in summer, with plans to begin the course in winter/spring 2020. For more information on the ASSIST program or to express interest in participating in the next study cohort, call (615) 322-2943 or email firstname.lastname@example.org.
Elizabeth Turner is associate director of VKC Communications.