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Telementoring project aims to improve access for adults with autism

Oct. 29, 2020, 9:56 AM

 

by Paul Govern

A team at Vanderbilt University Medical Center and Vanderbilt Kennedy Center is launching a program to improve access to primary care for adults with autism.

Their strategy: engage adult primary care clinicians from around the country — physicians, advanced practice nurses, physician assistants — in a series of live online case presentations and discussions guided by autism experts.

Janet Shouse and Beth Malow, MD, MS, are among a team of Vanderbilt Kennedy Center researchers seeking to improve access to care for adults with autism. (photo by Steve Green)
Janet Shouse, left, and Beth Malow, MD, MS, are among a team of Vanderbilt Kennedy Center researchers seeking to improve access to care for adults with autism. (photo by Steve Green)

Starting in November, the team, led by autism and sleep specialist Beth Malow, MD — herself the mother of two adult sons with autism spectrum disorder — will offer a pilot series of one-hour sessions, two per month for six months. The program seeks 25 participants; several participant slots remain open, see below for contact information. A second series will start in November 2021 with a new batch of 25 participants. The two-year pilot is funded by the U.S. Department of Defense.

Malow and her team will then evaluate the initial series and seek to expand the program to reach more clinicians.

“My goal is to find a way to increase access and improve the quality of care for adults with autism, without it necessarily costing more money,” said Malow, professor of Neurology, holder of the Burry Chair in Cognitive Childhood Development, and director of the Vanderbilt Kennedy Center Clinical Translational Core.

With autism prevalence increasing over recent years, the U.S. Centers for Disease Control and Prevention estimates that 5.4 million adults in the U.S. have autism spectrum disorder, equating to one in 45, or 2.2% of adults.

These adults can apparently have a difficult time finding primary care clinicians to take them on as patients, and this challenge is only in part due to their greater likelihood of being Medicaid recipients (many adults with autism rely on Supplemental Security Income, a federal program that entails enrollment in Medicaid).

Unlike the common run of pediatricians, adult primary care clinicians often lack training in intellectual and developmental disabilities, and this apparently contributes to their disinclination, as a group, to accept patients with autism.

“A lot of people still associate autism with being a pediatric condition, but the kids grow up,” Malow said. “And there are so few providers who really feel comfortable taking care of adults on the autism spectrum. So, the idea would be, can we equip primary care providers to feel comfortable with something that is becoming really common?”

Joining Malow to lead the sessions are autism specialists from the University of Washington, Yale University and Florida International University. They’ll be joined by a patient advocate (the parent of an adult with autism) and two academics who themselves are on the autism spectrum (one of these, David Caudel, PhD, is associate director of Vanderbilt’s Frist Center for Autism and Innovation). The study coordinator, Vanderbilt Kennedy Center staffer Janet Shouse, is herself the mother of an adult son with autism.

Up for discussion in the sessions will be topics such as identifying autism in adults; managing co-occurring medical and behavioral health conditions; using psychotropic medications; housing, education, employment and community supports; and supporting families/caregivers.

“What we want them to have is an understanding of what autism is and an understanding of how to work with somebody who either may be nonverbal or may be perfectly fluent but doesn’t always understand the nuances of what’s being communicated,” Mallow said.

The program is based on a telementoring program developed at the University of New Mexico in 2003 and since replicated around the world, called Project ECHO (Extension for Community Healthcare Outcomes). Malow visited UNM for training in preparation for this, the world’s first ECHO program devoted to adult autism.

“Like many others with disabilities, there’s a lot of good that these young adults can do in our society,” Malow said. “I’m a true believer that we’re helping our overall society when we pay attention to health care in this population, which has really gotten the short end of the stick and is not, in my opinion, getting the care they deserve.”

Along with continuing education credits, clinicians will receive compensation for completing questionnaires that will aid evaluation of the program and guide its improvement. For more information, contact Janet Shouse at janet.shouse@vumc.org.

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