A Novel Provider-Focused Training Program to Serve Transition-Age Youth and Adults with Autism Spectrum Disorder

Beth Malow, M.D., M.S.
Vanderbilt Kennedy Center Investigator; Burry Chair in Cognitive Childhood Development; Professor of Neurology and Pediatrics; Director, Vanderbilt Sleep Disorders Division

Janet Shouse
Program Coordinator, IDD Toolkit; Disability Employment Specialist, TennesseeWorks Partnership

– I’m Dr. Beth Malow, I’m a professor of neurology at Vanderbilt, I’m also a member and investigator for the Vanderbilt Kennedy Center, and I’m the director of the Autism Treatment Network at Vanderbilt. And the purpose of my research is to increase the number of providers to care for adults with autism. We’ve all seen the numbers of how many kids each year have autism, and these kids become adults, in fact, a recent study estimated that more than 5 million adults in the US, that’s like one in 45 individuals are on the autism spectrum. And the challenge is, there just aren’t enough trained providers to care for these adults. So what our project will do is train primary care providers, that means physicians, nurse practitioners, physician assistants, across the nation using Zoom, many of us are very familiar with Zoom now, using a model called the ECHO Model. And in this ECHO model, people get together at regular intervals to form a community practice, they present anonymous cases and they receive feedback from each other and from experts, and they also get short lectures and resources that help them gain expertise in caring for adults with autism.

– And I’m Janet Shouse, I am Dr. Malow’s study coordinator and I’m a Vanderbilt Kennedy Center staffer. I’m also the parent of a young adult with autism, and I know firsthand the difficulties in finding appropriate health care providers, those who are willing to serve young adults like my son, and also who are knowledgeable about autism and other developmental disabilities. And so, this research will help us find ways to connect with primary care providers, and I look forward to being a part of it.

– I’m engaging in this research because I really care about the health and well-being of adults on the autism spectrum. And like any of us, when people aren’t feeling well, when they are having sleep problems or other medical issues, or depression, they often retreat from life, and they’re not fully engaged and involved. And since adults with autism have so much potential to shape our society in positive ways, we really need them to be fully engaged.

– And I come at this from a little different angle. My son has some pretty significant challenging behavior, and I talk with a lot of families whose loved ones also exhibit challenging behavior, and we know that many times this challenging behavior is a result of medical issues that have not been addressed or psychiatric or emotional disorders that have not been dealt with in an appropriate manner. And so we need knowledgeable and willing healthcare providers to work with the individuals with autism and their families to try to improve the outcomes for everybody so that these adults can take part in their community, in their jobs, in their families, and do the things that they want to be able to do, and good healthcare is important for them just as it is for us.

– So, the outcomes of this research will help us train larger groups of providers. We want to understand particularly what makes a provider want to do this kind of a program, so that we can motivate them and get larger groups of providers in future studies, because our ultimate goal is to see if we can improve the health and well-being of adults with autism through this training program.

– It’s really important for adults with autism to be able to get the appropriate care they need in their communities, and not have to travel 90 or 100 miles, if even that’s available, to get the care that they need. And doing this research will help us understand how to engage the medical providers, how to help them know what needs to be done, and to be willing to do it. We realized that that there are some issues that are different in caring for adults with autism, there are certain comorbid conditions that need to be addressed, and they are offending issues and we realize this, but we would really love to have providers in every community across the nation, who are willing and capable and want to serve adults with autism.

For more information on VKC-affiliated research studies, visit https://vkc.vumc.org/studyfinder/
Vanderbilt Kennedy Center (VKC) Research Briefs are a series of 2- to 3-minute videos during which VKC members and investigators share exciting details and promise of new research opportunities in accessible “plain language.”

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