The ASSIST Program

ASSIST is a 12-week parent training program that helps parents advocate for services for their young adults on the autism spectrum. This project’s primary goal is to improve the transition to adulthood for youth with autism spectrum disorder (ASD).

When we tested a similar training program, focused on adults’ services in Tennessee, we found that compared to the control group, parents who took part in the program:

  • Knew more about adult services and supports
  • Felt comfortable and prepared to use that information to advocate for services for their son or daughter

We also had some evidence to suggest that participating in the program led to better post-school employment and post-secondary education outcomes and improved access to services.

These findings were very promising, but this initial program only took place in Tennessee. Service systems vary from state to state, so we wanted to build upon what we learned and see if we could expand the program to help as many families as possible. We decided to test a program that would be relevant across the nation, no matter what state you are in.

The ASSIST sessions provide parent participants with locally relevant information about:

  • The importance of person-centered thinking
  • Adult services and other resources
  • Rights and responsibilities within service systems
  • The best place to contact for the help needed
  • The value of being assertive
  • Maintaining motivation to learn about adult services

Each of the 12 sessions includes 1-3 topics, has an introductory presentation, a local expert who provides information specific to the participant’s state, and mixes content and discussion.

History and Development of the ASSIST Program

The ASSIST program is an extension of the Volunteer Advocacy Project- Transition (VAP-T), which trains parents of youth with autism spectrum disorder (ASD) to advocate for adult disability services in the state of Tennessee. Using the framework of the VAP-T, ASSIST includes 24-26 hours of instruction delivered in 12 weekly sessions, composed of didactic instruction, activities, and case studies.

To develop the content of ASSIST, project personnel from three states (Tennessee, Illinois, and Wisconsin) revised the existing VAP-T curriculum to be nationally relevant through weekly video conference calls, and one in-person meeting. Personnel included experts in transition-related and adult services, social workers who are experienced in disability services and supports, parents of individuals with ASD, service providers, and members of statewide disability organizations. First, topics to be included in ASSIST were discussed, building from the VAP-T curriculum along with the discussion of potential new topics. After the set of session topics was decided, we examined each VAP-T session and reviewed relevant documents (e.g., regulations, statutes, case law, blogs, white papers) to determine what content is nationally relevant and should be included in introductory videos. We also determined what state-specific content was most important to include in learning objectives for local experts. The development of ASSIST was an iterative process, with multiple levels of feedback in each phase of development.

Study Purpose and Participants

The purpose of this project is to develop and test the effectiveness of a national curriculum of the ASSIST (Advocating for SupportS to Improve Service Transition) program. The ASSIST project has enrolled over 180 families and is following them over 3 years to measure this nationally relevant program’s effectiveness.

Because we have modified program content to make it applicable to service systems across the nation, we are rigorously testing the ASSIST program in three states with different service systems (Tennessee, Illinois, Wisconsin). We are including the perspective of young adults with ASD in the data collection, and we are examining how the ASSIST program influences youth outcomes. Finally, we are exploring barriers to participation and factors that make it more challenging for families to receive the services they need.

Recruitment for this study is closed. However, if you are interested in participation you can check out our other studies examining factors related to the transition to adulthood for youth with autism spectrum disorder (ASD) and their parents. Also, keep an eye out for future follow-ups to this study!