Vanderbilt Kennedy Center (VKC) investigator Julie Lounds Taylor, Ph.D., recently secured two research grants to study quality of life for adolescents and young adults with autism spectrum disorder (ASD). One grant will focus on ways to support individuals in their work and school, and the other will study specific day-to-day experiences associated with depressive symptoms in their lives.
“We wrote these grants because we noticed huge holes in the autism research literature, which were impeding our ability to develop evidence-based treatments to improve the quality of life for individuals on the autism spectrum,” said Taylor, who serves as associate professor of Pediatrics and Psychiatry & Behavioral Sciences. “We have been working on getting both of these grants funded for nearly five years, and I think the fact that their time has finally come shows a maturation in the adult autism research field,” Taylor added. “For a while, funded research was focused on describing the challenges faced by youth and adults on the autism spectrum. Are autistic adults working? What are their rates of depression? How are they doing in school? Findings from these initial studies were alarming, and so the focus of research abruptly shifted to developing and testing interventions to improve the quality of life for autistic youth and adults.
“But much of the foundational research to understand what exactly we should be intervening in and who might benefit most from certain programs hadn’t yet been done,” Taylor continued. “With some promising treatment trials now underway, it seems as though there is now support for stepping back a bit and trying to understand why and how autistic adults might be struggling, so that we can continue to develop interventions and treatments that are grounded in evidence. We are excited to get to contribute to this evidence base.”
The first study, “A Longitudinal Study of Employment and Educational Instability for Young Adults with Autism Spectrum Disorder,” is funded by the National Institute of Mental Health. Difficulties in employment and postsecondary education (PSE) among young adults with ASD are nearly universal. In response, interventions have been developed that target obtaining a job or gaining admittance to a PSE program. However, preliminary research suggests that maintaining a job or PSE enrollment is more difficult than obtaining those positions in the first place, and the predictors of keeping a job are different than those associated with starting a job.
“First, we observed in our studies and in our conversations with autistic adults and families, that maintaining jobs and college attendance was a significant challenge,” said Taylor. “Getting that job or getting into college was only half the battle – being successful in the position once there was just as much of a challenge, if not more so. In one small study, we found that 50 percent of young adults on the autism spectrum dropped out of college or left jobs under challenging circumstances in the first two to three years after leaving high school. This was alarming to us, as most research in the autism field is concerned with helping adults find jobs or get into college. But we do adults no favors by understanding how to help them get a position without understanding how to help them be successful in these positions once they are acquired.”
With this grant, Taylor’s research team will follow adults on the autism spectrum for three years as they navigate employment or postsecondary education, studying contributing factors in job loss or retention. The goal is to identify specific services or factors that are associated with adults with ASD keeping jobs, that can be leveraged in new interventions down the road.
“This is clearly a challenging time to be studying the employment and daily activities of individuals on the autism spectrum,” Taylor said. “The current global pandemic is impacting work, school, and social activities for all of us, but especially for individuals with disabilities. However, the timing also provides us the opportunity to investigate new, important questions that we might not have been able to study otherwise. For example, we expect that many autistic adults who are currently unemployed due to COVID will be moving back into the job market over the course of our study, and we will be well-positioned to examine the factors associated with re-entry into the labor market.”
The second project, “The Influence of Social, Educational, and Work Experiences on Psychological Health for Transition-Aged Youth with Autism Spectrum Disorders,” is funded by the U.S. Department of Defense Autism Research Program. This project focuses on the relationships between day-to-day activities and depression in adolescents and young adults on the autism spectrum.
“We, and many others, have observed very high rates of depression among autistic adults. We also observe high rates of day-to-day circumstances or activities among these individuals that could be considered depressing, such as peer victimization, struggles in school or work, and challenges in social relationships,” said Taylor.
“If our hypothesis is correct, and depression is resulting, at least in part, from some of these difficult daily experiences, a myriad of new avenues for mental health treatment for autistic individuals might open. That is, instead of medicating the depressive symptoms, or trying to teach people to think differently about their lives, we may be able to directly intervene in the situations that are causing that person to be depressed,” she said.
Taylor’s team will recruit 250 families of individuals between the ages of 15 and 25 who will take part in self- and parent-issued interviews, surveys, and daily reports designed to examine relationships between depressive symptoms, quality of life, and multiple types of experiences. Surveys will be completed online, and interviews will be conducted over the telephone.
“Our goal is to understand which day-to-day activities are associated with depression, and for whom – because autism is a very wide spectrum – so that we can think about new treatment options and maybe even be able to identify those individuals who are most at-risk to experience depression.”
Research recruitment for both studies will begin in late 2020. For more information about participating in VKC research, visit VKC StudyFinder. For more information about these studies, or to fill out an interest form to participate, visit www.vumc.org/transitionslab/.
Elizabeth Turner is associate director of VKC Communications.