A group of Virginia Tech faculty and graduate students are taking their expertise on autism spectrum disorder on the road with a unique mission — to serve people who live in Virginia’s rural Central Appalachian region.
They are converting a recreational vehicle into a traveling clinic to provide clinical care and support to families who have children with autism.
“Appalachia is one of the most underserved regions in the country,” said Angela Scarpa, an associate professor of psychology at Virginia Tech who is leading the mobile clinic effort. She also co-directs the Virginia Tech Autism Clinic in Blacksburg.
“A lot of the families have nowhere to turn,” she said.
Several times a week from spring through November, faculty and graduate students plan to drive the 2004 Itasca by Winnebago Spirit RV approximately 115 miles southwest from Blacksburg to an area covered by the Mount Rogers Community Services Board. This area comprises five counties and one city.
The RV, one of several mobile health units across the country that serves children with autism, will be ready for travel this spring.
There they will offer therapy sessions for families and children who have autism spectrum disorder, which is a group of developmental disorders that impacts a person’s ability to communicate and function socially in many areas of life. The team, which includes Denis Gracanin, an associate professor in Virginia Tech’s Department of Computer Science, also plans to incorporate technology in a way that they can communicate with families when the mobile clinic is not visiting the area.
“We want to develop an intervention that targets parent training in rural areas,” said Scarpa. “The idea is to reduce the disparities in access to evidence-based care for autism in these areas.”
Other Virginia Tech faculty members have worked in Appalachia. In the past few years, an interdisciplinary team studied health disparities there and found that rates of certain diseases, such as cancer and cardiovascular disease, are higher compared with other parts of the country.
The team suggested that more research is needed to determine how the region’s topography and industries, such as coal and natural gas, affect health.
There is a strong need for autism clinical services in Virginia’s Central Appalachian region, where there are few clinicians to work with autism patients, said KJ Holbrook, coordinator of counseling services for youth and family at Mount Rogers Community Services Board.
“It’s just hard to get a lot of people to apply [for jobs] in this area,” she said.
Also, it often takes longer for people in rural areas to be diagnosed with autism spectrum disorder, Scarpa said.
In the United States, one in 66 children has an autism spectrum disorder, according to the Centers for Disease Control and Prevention.
Scarpa has a personal understanding of the plight of parents seeking accessible clinical care for their children with autism. In 2005, she founded the Virginia Tech Autism Clinic as a result of her own struggles to find autism services for her son.
Before the clinic, Scarpa drove about three hours each way to the UVA Child Development and Rehabilitation Center, formerly the Kluge Children’s Rehabilitation Center in Charlottesville, Virginia, for her son’s evaluation and follow-up care. The Blue Ridge Autism and Achievement Center, then located in Bedford, Virginia, and more than 60 miles from Blacksburg, was the nearest place for him to receive behavioral therapy.
“I felt almost responsible for all [parents] in the area going through the same thing,” said Scarpa, who is a licensed child psychologist.
She founded and directs the Virginia Tech Center for Autism Research, housed in the College of Science, to promote autism-related research across disciplines.
But even the Blacksburg clinic is too far for many families who live in rural Southwest Virginia to travel for services, she said.
Scarpa decided to take Virginia Tech’s expertise to them.
Last year, she received a $99,784 grant from the Malone Family Foundation, a nonprofit, as part of its atypical development initiative program. She used the funds to purchase the RV and to hire a rural outreach coordinator, Jen Pollard Scott, to lead the day-to-day work with rural communities. Scott, who has a master of public health degree from Tulane University, formerly was assistant director of the Center for Accessibility Services at Radford University.
The grant ends in 2019.
Some Virginia Tech faculty members also received funding last summer to further research the mobile autism clinic’s role in using both in-person and distance training, through technology, for families.
The team of Scarpa; Gracanin; Laura Jensen, an associate professor at the Center for Public Administration and Policy; and Sharon Ramey, a professor and distinguished research scholar at the Virginia Tech Carilion Research Institute; received a $19,686 grant from Virginia Tech’s Policy Strategic Growth Area stakeholders group.
This group, one of the university’s four strategic growth areas, aims to develop policy research, education, and outreach that builds on Virginia Tech’s strengths.
The RV is undergoing renovations to create space inside for therapy, meetings, and a sitting area for clients. Scarpa and her team are in the process of scheduling focus groups in the Mount Rogers area to assess the needs there.
The plans for the mobile autism clinic drew Angela Dahiya-Singh to Virginia Tech from California for her doctoral work.
“My experience with autism has been in big cities,” said Dahiya-Singh, who previously worked at UCLA with autism patients as part of her master’s degree program. “I was interested in learning about areas that don’t have access to these services.”
She is studying for her Ph.D. in psychology, with a focus on clinical science. For the next four years, she will work under Scarpa and with the mobile autism clinic through a doctoral fellowship with the Institute for Critical Technology and Applied Science at Virginia Tech.
Eventually, Scarpa said she hopes to add a research component to this work.
“We really want to build on the strengths of the community,” she said. “These communities are very family oriented and have strong social ties. We want to be able to be part of that, but also provide them with the empowerment and the ability to use those strengths to their advantage.”
To donate, visit: www.psyc.vt.edu/outreach/autism/donations
— Steven Mackay