Arkansas Delta leaders hope to dry up autism deserts

The Arkansas Delta is defined by long rows of cotton, soybeans, rice and other crops. The word desert is almost never used to describe any part of this region, but for children and adults who suffer from autism, many parts of the region are devoid of services that could help them cope with their condition.

There is an effort underway to change that dynamic.

Dr. Peggy Schaefer Whitby, an associate professor of curriculum and instruction with the College of Education and Health Professions, hopes to create five autism therapy centers across the state. It would cost an estimated $2.5 million per year to operate these centers and they would be placed in rural areas, targeting communities throughout the Delta. They haven’t identified a funding source yet, but Schaefer Whitby hopes that will change as the word about this problem gets out.

“I think it’s really important to increase the capacity in the community to provide these services,” she said.

Autism or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and non-verbal communications, according to the Centers for Disease Control and Prevention. Autism has many sub-types, most influenced by a combination of genetic and environmental factors.

Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. The ways in which people with autism learn, think and problem-solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently, according to Autism Speaks.

Several factors may influence the development of autism, and it is often accompanied by sensory sensitivities and medical issues such as gastrointestinal (GI) disorders, seizures or sleep disorders, as well as mental health challenges such as anxiety, depression and attention issues.

About one in 65 children has been diagnosed with some form of autism nationwide, but in Arkansas only one out of 68 have been diagnosed and those numbers are higher for minorities. The state ranks last in terms of late childhood diagnosis, which means those children receive treatment and services later in the process and it can impact outcomes, Schaefer Whitby said. It can also take from 18 months to two years to get a full diagnosis.

According to Schaefer Whitby, each center would have two autism therapists and several registered behavior technicians. The autism therapists would have to be a qualified behavior analyst.

These therapy centers ideally won’t require the construction of a building. The goal is to partner with rural health centers and other established healthcare providers in the area. Those centers would provide the physical work spaces from which the therapists and techs would work. The centers might also coordinate with the local school districts to provide services.

One organization that would be interested in a partnership of this kind is Kids For the Future, a day center that provides services to preschoolers that have developmental delays. KFF owner Bess Ginty told Talk Business & Politics early detection is the key, and the sooner applied behavior science therapy (ABA) can start, the better off the child will be. ABA therapies are individually designed to allow a patient to reach age-oriented goals. Those therapies might include learning games, communication training, non-verbal use of pictures, and others.

Ginty gave an example of a young child who was non-verbal and couldn’t walk down a hall in a line without “melting down.” An ABA approach was devised for the child and during the course of several months, the child improved and now can walk in line with others with becoming upset.

Each day, her company works with about 1,500 children, she said. The problem is still pervasive in many rural Arkansas communities, but in recent years there have been some slight improvements, she added.

“It’s getting better,” she said.

If funding from a donor, donors, a grant or other sources can be acquired, the first clinic will be formed in Helena. It’s central location in the Delta region would be beneficial. Her goal is to find a qualified staff, Schaefer Whitby said.

Schaefer Whitby has partnered with UAMS East, Partners for Inclusive Communities and the Arkansas Autism Resource and Outreach Center. The idea was to identify community stakeholders that could help to identify children and get them screened, she said.

Autism isn’t just a problem for the sufferer. It’s a problem that impacts society as a whole, she said. An estimated $35 billion is spent each year on long-term care for autism sufferers, and many of these people could be higher functioning members of society if they are diagnosed early and receive the right treatment. Early diagnosis and treatment leads to a better quality of life for the child and it also costs society less in the long run to take care of them, she added.

“We will have to pay for this one way or the other,” she said.