Autism in a care desert

April, a month dedicated to autism awareness and acceptance, may be over, but for families with autistic loved ones, it’s a year-round effort to get the needed support.

While no experience is universal, people with autism often struggle with social interaction and communication, sensory issues and repetitive behaviors. In order to help a person with autism have a better understanding of their behaviors and triggers, therapy of some sort is generally suggested.

However, parents in Southwest Iowa have found it difficult to find the needed resources, calling this part of the state a desert.

“The options right now are either to travel to Des Moines three to five times a week, and you probably do have a few families doing that,” Kathy Thorne Ralston, the mother of a son with autism and an advocate for autism resources, said. “If it was as readily available when we first moved here, I would have done that. It’s that or there are some therapists in the area that are trying to assist with general therapy, I would imagine, but otherwise, I don’t know what they’re doing.”

Thorne Ralston is advocating to bring Applied Behavior Analysis to Creston. Started in the early 20th century, ABA is a research-based behavior therapy aimed toward children which works to develop coping skills, increase positive behaviors and reduce challenging behaviors.

The goal of ABA is not to take autism out of a child but to help them get through life a little more easily.

“As a parent, that was one of the things that I often considered when considering putting him in different therapies,” Thorne Ralston said. “I feel like anyone that knows Isaac sees that’s an important part of, he certainly is his own unique person, but he has very much benefited from very repetitive and systematic and isolated work on understanding his behaviors, on understanding what he is being triggered by. It’s a constant process.”

ABA became Medicaid funded in 2014. Since then, clinics have sprouted in cities around Iowa, everywhere except for the desert of Southwest Iowa.

While some families may be able to travel to Des Moines for three to five appointments a week, most families who want ABA for their child have given up. Parent Stephanie Rettig of Afton said she had her son Carter on a waiting list for years before an opportunity came up.

“One of the places I had reached out to, she had pointed me to this organization that focuses primarily on coming into the home,” Rettig said. “It’s called Carelinks ABA. To have it in our home where he’s comfortable rather than having to go to a clinical setting has been really great.”

The Des Moines-based clinic offers in-home care in various parts of Iowa. Rettig said this is also helpful to the family.

“They just help you help them be able to regulate themselves, so it’s not just him being in therapy by himself,” Rettig said. “We’re all basically taking it as a family together. It’s not solely focused on, we need to make it so he changes who he is to fit in, it’s, let’s give him tools to help in just being able to regulate himself.”

As more people use ABA and see its uses, Thorne Ralston hopes a clinic takes interest in Creston.

“I think they all recognize that this is a desert, but they have their hands full with they are now,” Thorne Ralston said. “What they’ve found is families are moving to them. They are, but they shouldn’t have to. We ought to be able to have the best case scenario here.”

While Thorne Ralston’s family has aged out of using ABA services, she still is advocating for its use in Creston and the rest of Southwest Iowa.

“What I do see is so many families that could be at least considering this as an option for their loved one in this area if we were able to,” Thorne Ralston said. “Either through the medical community or the business community or the therapeutic community, or a collaboration of all of those, helping to host a company with reputable services.”

For those interested in going toward the ABA route, Rettig suggests parents talk to clinics outside their feasible area.

“If you have any questions about it, you could just call any place at all for ABA and just ask them questions,” Rettig said. “From what I have found in the past, anybody is really willing to talk about what they provide.”