Children who are diagnosed with autism tend to be urban, male, white, and live with two parents with higher-than-average education. Every child deserves to have health care, but for children with autism in Appalachia, the struggle to obtain adequate care is even more pronounced.
The Centers for Disease Control and Prevention estimate that autism spectrum disorder (ASD), a series of complex brain disorders characterized by communication problems, repetitive behaviors, and social and behavioral challenges, affects roughly 1 in 68 children. Dr. Angela Scarpa, a professor of psychology at Virginia Tech and the director of the VT Center for Autism Research, knows firsthand how hard it can be to ensure children with autism receive the treatment and services they need to thrive. Despite living in Blacksburg, Virginia, a university town of more than 42,000 people, she has struggled to find services for her own son with autism.
Her challenges have informed her understanding of the issues surrounding the lack of access to autism treatment for children in Appalachia, as well as her approach to solving it: bring treatment to children and their families.
Scarpa leads a project sending health-care professionals out to rural areas in Virginia via a specially refurbished vehicle: a 29-foot long RV. Outfitted with a wood laminate floor, a cozy sitting area in the front with chairs and a loveseat, a work space in the back, and video equipment for supervision and feedback forthcoming, the mobile clinic mirrors the interior of a traditional office.
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“The main idea is to travel to locations with populations that have a hard time accessing treatments and therapy,” Scarpa said in an interview with Rewire.News.
“Right now, we’re starting with a community of five counties, including the city of Mount Rogers. There is a high waiting list of children, so we decided to start there. We plan to go places that are able to accommodate us but are also centrally located so that most people can access them, places like churches, health and wellness centers, libraries. We come to where they are.”
Scarpa confirmed what Appalachian families with children with autism already know: the area is woefully underserved. According to the state’s Department of Education, nearly 12,000 children with autism attend school in Virginia, but Scapra said: “When it comes to autism, because it is such a specialized disorder, and such a relatively recent diagnosis, there are fewer people who are trained in its assessment and treatment worldwide. The disparities are even greater in rural areas. The people there are so underserved, in part because it’s incredibly difficult to find people who specialize in autism treatment to move here. And for the people who already live here, it’s nearly impossible to find training.”
Dr. Bryan Parsons, a professor at Roanoke College in Virginia, was living in rural Tennessee when his son was diagnosed a week before the child’s third birthday. “I remember in the autistic diagnosis appointment, the psychiatrist who did the evaluation told us, in what seemed like the same breath, essentially, ‘Good luck in the state and in your area because there aren’t a lot of services,’” Parsons told Rewire.News. “To hear her say that was a bit of a gut punch.”
He had noticed his son had a speech delay and brought it up with his pediatrician, who at first chalked it up to individual differences. A few months later, the pediatrician suggested an early intervention program and speech therapy. “The closest speech therapist was about a two hour round trip from our home,” Parsons said. His son also ultimately had occupational therapy. “All told, his treatments were four hours round trip. Essentially, being in the middle of nowhere was incredibly difficult for at least two reasons: 1) It took forever to get to whatever services we need and 2) Whatever services there were, were full.”
While some children in Appalachia are covered by private insurance, many have to wait for openings in the paltry numbers of state programs for autism treatment—sometimes, that wait time stretches for years. Children on Medicaid may not receive treatment at all, as many programs considered the most effective don’t accept Medicaid.
Children with autism frequently struggle with behavioral and developmental issues, so Scarpa and her team work with children to find ways to inspire them. “For little kids who are struggling with language skills, for instance, we may work to motivate them by pairing speaking with something interesting or entertaining to them, to motivate them to speak,” Scarpa said. “So if we want to teach a child to say ‘ball,’ we give them the ball as reinforcement when they say that exact item. It’s all about finding ways to motivate children.”
Scapra’s team “follow[s] a model called pivotal response treatment. It’s a parent training approach,” she explained. “We train parents on developing skills based on applied behavior analysis. We know children spend most of their time with their families, so we work with parents to reinforce and maintain what we’re doing with the child in treatment. We give parents basic instruction on skills, and then once they have the foundation, we then ask them to practice at home. At that point, we ask them to tape their interactions and bring the tape back. We review it, troubleshoot, and give very specific feedback on things to do differently to make their teaching even more effective. We are also trying to work on parenting stress and coping skills.”
She emphasized the importance of caring for the whole family when it comes to autism. “Families are very important. If you start with younger children, you have a wider impact as they grow. For many of these kids that are stuck on waiting lists or who receive little to no treatment at all, this is dire, because their best chances at improvement comes from early intervention. The earlier we can identify and treat children with autism, the better their outcomes will be,” Scapra said.
While the RV is currently only being used for treatment and therapy for children with autism, Scarpa hopes they can eventually expand their services. “Ideally, we would love to do assessment in the future,” she said. “We really want this to be a long term project, we really want to be a part of the community.”
Parsons ultimately moved to suburban Virginia in order to get better treatment for his son. He noted the stress his son’s lack of treatment caused his family, including health problems, but knows he has a freedom and latitude not afforded to many people who live in rural, Appalachian areas. “Lots of people have family ties that keep them there,” Parsons said. “In our case, what worked in our favor was we had income and education to just pick up and move. We lucked out; all the services have been good for our son …. He’s doing great now. He’s in public schools, doing wonderful, talking, interacting. I often think had we waited to leave Tennessee, we may not have seen the progress we’ve seen with our son.”
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