ASSIST (Advocating for SupportS to Improve Service Transition) is a 12-week parent training program that helps parents advocate for services for their young adult on the autism spectrum. The main goal of this project is to improve the transition to adulthood for youth with autism spectrum disorder (ASD).
When we tested a similar training program a few years ago, we found that compared to the control group, young adults whose parents took in the program were more likely to:
be enrolled in post-secondary education (PSE), such as college
receive more school-based and adult services
These findings were very promising, but this initial program only took place 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 project will enroll 180 families and follow 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 adult 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.
We believe that ASSIST participation will improve parents' advocacy ability, leading to higher rates of employment, education, social participation, and service access for youth with ASD. We will test this hypothesis by randomly assigning parents of transition-aged youth with ASD (ages 16-26) to either an intervention group or a control group. The intervention group attends the in-person training sessions for 12 weeks, while the control group receives course materials in the mail. However, the control group will still have the opportunity to take the in-person training program at a later date, so all participants will be able to join the group – some may just have to wait a bit longer than others. We will collect follow-up data from families every 6 months for 3 years.
The project will result in a new intervention to improve outcomes for youth with ASD that can be implemented across the country. By participating, you can help us test the program and show us how we can make it better!
If you are interested in participating or know someone who may qualify, please fill free to fill out this brief form, and we will reach out to you as soon as possible!
https://is.gd/assisttn
Language Development in Fragile X Syndrome
Fragile X syndrome (FXS) is the leading genetic cause of intellectual disability, resulting from a mutation in the FMR1 gene on the X chromosome. Language impairments are common among individuals with FXS. These language impairments can impact reading, learning, social interaction, and life skills.
In this study, we will focus on language development during transition from high school into adulthood, examining the experiences of individuals with FXS in contexts that require and promote independence. We will also evaluate pragmatics and literacy, which are challenging areas for individuals with FXS.
The project has four goals:
(1) Describe the development of language, literacy, and the capacity for independent functioning in FXS during the transition into adulthood. We will use a variety of measurement strategies and paint the most holistic picture to date of the transition to adulthood for FXS.
(2) Evaluate for the first time the two-way relationships between the independent functioning and language and literacy.
(3) Examine variations of language and literacy within the FXS population and which factors contribute to these differences.
(4) Identify s*x differences in language, literacy, and the capacity for independent functioning, which are areas that have not yet been researched in the adult transition years.
Participants will enroll in the project in their last year of high school. They will complete 4 visits of the course of 3 years: two at Vanderbilt University Medical Center and two at home. Travel costs will be reimbursed.
To participate, please call 615-322-2943 or email us at transitions@vumc.org!
