Charting the Course of Autism in Adulthood (CCAA): A Longitudinal Study on Employment and Educational Instability for Young Adults with Autism Spectrum Disorder

Difficulties in employment and postsecondary education (PSE) among young adults with ASD are nearly universal. In response, interventions have been developed that target finding a job or gaining acceptance to a PSE program. However, getting a job or into a program is only the start -- our work suggests that maintaining a job or PSE enrollment is more difficult than obtaining. The factors that influence how long an individual can keep a job or stay in an educational program (e.g., family climate, community size) are different from the factors that play a role in how someone starts a job or program (e.g., verbal skills, how well someone adapts to their environment). New interventions are needed that focus on maintaining employment or PSE. Yet the previous studies are limited in their ability to inform the development of these necessary interventions due to issues such as small sample sizes, finding how to address a group of people with such diverse skills and abilities, and not enough data to test hypotheses about job/educational instability.  Our study's primary goal is to thoroughly evaluate the factors that lead to and consequences that results from job and educational instability.

In studying the thoughts, feelings, and experiences of those on the individuals on the autism spectrum between the ages of 18 - 35, we aim to examine how these relate to the life course of these 200 participants over a period of years.

We are no longer recruiting new participants for this study.

The ASSIST Program

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 employed
• 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 enrolled ~180 families and followed them over 3 years to measure this nationally-relevant program’s effectiveness. Because we modified program content to make it applicable to service systems across the nation, we rigorously tested the ASSIST program in three states with different service systems (Tennessee, Illinois, Wisconsin). We included the perspective of young adult with ASD in the data collection, and we examined how the ASSIST program influences youth outcomes. Finally, we explored 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 tested 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 attended the in-person training sessions for 12 weeks, while the control group received course materials in the mail. However, the control group still had the opportunity to take the in-person training program at a later date, so all participants were able to join the group – some just had to wait a bit longer than others. We collected follow-up data from families every 6 months for 3 years. This study resulted in a new intervention to improve outcomes for youth with ASD that can be implemented across the country.

Find more information about ASSIST at: https://assist.vkcsites.org/

We are no longer recruiting new participants for this study.

Daily Experiences and Mental Health Study

Youth with autism spectrum disorder (ASD) experience extremely high rates of depression.  However, few studies have investigated how depressive symptoms in this population relate to daily life experiences. This study aimed to test the associations between depressive symptoms and various educational, vocational, and social experiences among youth with ASD.  We wanted to explore the connection between mental health and various types of everyday experiences, such as feeling included at school, the level of engagement at work, and the types of people someone spends time with most. We recruited ~250 young adults with ASD and their parents from the Simons Simplex Collection (SSC) at the Interactive Autism Network registry (a national registry of well-characterized children and youth with ASD) and collected data using survey, interview, and experiential sampling methods. We also examined how other factors, like adaptive behavior and core ASD symptoms, play a role in the relationship between everyday life experiences and depressive symptoms. This study provided critical, specific, and actionable information to address the treatment barriers for depressed youth with ASD. 

We are no longer recruiting new participants for this study.

Language development in Fragile X syndrome study

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 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 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 sex differences in language, literacy, and the capacity for independent functioning, which are areas that have not yet been researched in the adult transition years.

We are no longer recruiting new participants for this study.

Past Projects

Volunteer Advocacy Project - Transition (VAP-T)

In this project, we adapted an existing parent advocacy program (the Volunteer Advocacy Project; VAP) to create an intervention targeting the needs of transition-aged youth with ASD (the Volunteer Advocacy Project – Transition, VAP-T). We conducted a pilot study, using a randomized controlled trial with a waitlist-control design, to gather preliminary data about the efficacy of the intervention and moderators of treatment response. The resulting information was used to develop a treatment manual, as well as to provide preliminary data for a larger multi-site randomized-controlled trial (the ASSIST project). The years immediately after high school exit are a critical time period that either makes or breaks a successful transition to adulthood. If they don't go well, disengagement from post-secondary education, work, and social isolation can persist throughout adulthood, leading to significant societal costs. Despite the pressing need to better support youth with ASD during this turbulent time, few interventions for these youth have been developed and even fewer tested. Our preliminary work has demonstrated the efficacy of a 12-week parent training program targeting parents' ability to advocate for services on behalf of their offspring (called the "Volunteer Advocacy Program-Transition" or VAP-T), in improving the transition to adulthood for youth with ASD. Relative to a wait-list control group, youth whose parents participated in the VAP-T were more likely to be employed or in post-secondary education, and they received more school-based and adult services.

We are no longer recruiting new participants for this study.