Vanderbilt Kennedy Center (TN UCEDD, LEND, IDDRC) Investigator Develops Initiative to Focus on Empowering Young Adults with Autism

by Tom Wilemon

September 25, 2017

A new initiative, developed by Beth Malow, M.D., M.S., Burry Chair in Cognitive Childhood Development; professor of Neurology and Pediatrics, and a Vanderbilt Kennedy Center investigator, aims to improve the lives of young adults with autism spectrum disorders who often end up socially isolated once they leave school.

The initiative, called Spectrum Pathways, begins with a week of engagement, where Vanderbilt University students and participants take part in activities that range from visiting the Nashville Zoo at Grassmere or the Frist Center to navigating public transit.

The week is followed by three months of weekly, individualized, phone coaching sessions. Vanderbilt student coaches provided encouragement and structure for the participants' goal attainment process. Additionally, participants have the opportunity to attend at least one outing during this time.

The goals of the initiative are for participants to learn about community resources, ways to manage stress, improving their health and setting goals.

The effectiveness of the initiative is measured in multiple ways including data gathered by activity monitors worn by participants and surveys of participants.

"This is a group that oftentimes is described as falling off the cliff because there are so many supports when you are a kid, particularly if it is a good school system," said Malow. "There is a lot of emphasis placed on kids with autism. For example, funding goes for kids with autism, not so much as adults."

Spectrum Pathways is made possible by a Vanderbilt Trans-Institutional Programs (TIPs) grant. The five-year, $50 million TIPs enterprise, launched by Vanderbilt University Chancellor Nicholas S. Zeppos in 2015, supports trans-institutional research and teaching, a foundation of the university's Academic Strategic Plan.

The "Optimizing Health and Well-Being in Adults With Autism Spectrum Disorders" proposal, awarded a grant in 2016, brings together faculty in the School of Medicine, the College of Arts and Sciences and Peabody College to pursue new autism research and develop innovative educational programs focused on adults with autism spectrum disorders, a population currently underserved.

The Spectrum Pathways program is part of this TIPs grant, connecting The Martha Rivers Ingram Commons and Vanderbilt University Medical Center (VUMC).

"I was very pleased that The Commons, specifically, and Vanderbilt undergraduates, more generally, could be involved in this initiative," said Vanessa Beasley, Ph.D., associate professor of Communication Studies and Dean of the Martha Rivers Ingram Commons. "The opportunity to work with and learn from young adults with autism is unique, and it will be a benefit to our students in ways that may match, if not surpass, the benefits to the young adults in the study."

The 18-month program is for people ages 18 to 35 with autism spectrum disorders. The initiative is seeking 70 participants. Enrollment is ongoing for the fall program, which runs Sept. 18-22. A spring 2018 program is also planned.

Activities will vary, but they may include community service projects, music and theater, yoga and meditation, outings to sporting events and vocational training.

TA McDonald, Ph.D., with VUMC's Department of Neurology, is the postdoctoral fellow associated with the study.

"Many adults on the autism spectrum have experienced others setting goals for them," McDonald said. "This program is focused on the adults setting goals for themselves."
The initiative was piloted in April with a small number of participants. One young woman set a goal to visit her grandparents on a solo trip.

"She focused on how do I plan a trip, how do I get on the internet, how do I look at plane fares, etc.," Malow said. "We also asked her to consider what would be the most stressful part of the experience. She said the airport. What could simulate the airport? A shopping mall is similar. So one of her outings was to go to the mall and be exposed to lots of people and have her coach with her."

The purpose of the outing was not a practice run for boarding a plane, but it did allow her to confront a fear of crowded places. While she is still planning her trip to visit her grandparents, she has gone on an out-of-state trip with friends, which was a first-time experience for her that brings her closer to her goal of traveling cross country.

Malow, who is also director of the Vanderbilt Sleep Disorders Division, said a patient case led her to set up this study.

"I was trying to help one of my patients who was staying up at night and sleeping during the day," she said. "I realized his erratic sleep habits were being driven by the fact he didn't have anything to do during the day. He was stuck at home. He was in a rural area. He couldn't get out. That's how I first conceptualized the idea we could take these adults with autism, bring them to Vanderbilt and kind of immerse them in things they were interested in."

Spectrum Pathways also links participants with community resources close to their homes, Malow said, that can benefit their health and wellness.

For more information about the Spectrum Pathways study, email Spectrum.forLIFE@vanderbilt.edu or call McDonald at 615-343-2626.

Collaborators with Malow, Beasley, and McDonald on this initiative include Blythe Corbett, Ph.D., Erik Carter, Ph.D., Kaite Gotham, Ph.D., Linda Manning, Ph.D., Tyler Reimschisel, M.D., Elisabeth Sandberg, Ph.D., and Julie Lounds Taylor, Ph.D.