A Bloomington-Normal nonprofit aims to fill the need for Central Illinois families seeking autism support amid a shortage of providers.
Applied Behavior Analysis [ABA] is a behavioral modification therapy that Lifelong Access uses as a form of positive reinforcement to help clients improve communication, social skills and ability to do other tasks.
Senior Director of Applied Behavior Analysis Dan Ervin said the organization initially used ABA to train staff in understanding behavior and improve outcomes with clients. The results prompted expanding services to include pediatric and adult ABA therapy, "so people can reach these areas of their life where maybe they couldn't before.”
Kim Manieri is a Board-Certified Behavior Analyst [BCBA] with Lifelong Access. She said ABA helps autistic clients modify challenging behaviors sometimes associated with difficulty communicating.
"If I don't know how to tell you I need to use the bathroom, that might show in challenging behavior, like me pacing around the room or running out of the room to go get to somewhere to find a bathroom," she said. "If I were able to express my needs, I could ask for help, or I could ask where the bathroom is, so I'm easier able to navigate my environment based on my needs.”
Autistic children may experience difficulty with potty training for myriad reasons, said Jenna Franklin, ABA case supervisor with Lifelong Access. Franklin said among those reasons is a difference in the brain and body connection among neurodiverse children and the interpretation of those signals.
"You might not understand or realize that sensation of I have to go to the bathroom, so now this is the time that I would go and sit on the toilet," Franklin said.
Such as in the case of Bloomington resident, Adrienne Overmeyer’s son, who was five years old when he began receiving ABA services. Overmeyer hoped the therapy would help with potty training and address safety concerns.
“Another thing that we were experiencing was a lot of eloping and him running away often, and we needed help with that. And ABA ended up helping us with so many things, but those were kind of the two biggest things that we were experiencing.” Overmeyer said, noting her son would run away while they were in parking lots or while walking in the street.
She said within a few weeks of implementing the plan drafted by their therapist to address the potty training, her son began using the toilet.
Franklin said the ABA plans are rewards-based and tailored to reinforce motivation for the child to perform certain tasks. The plans are adjusted based on the data collected from parents and caregivers.
“ABA is super big into data collection. It's very focused on observable and measurable data. So, I think when we're collaborating with families, it's a little bit different," Franklin said. "But in the clinic, we take very detailed data on maybe how many times a certain behavior is occurring, if it's elopement, how many times in a session is a client eloping from safe spaces?”
Franklin said the data helps them track if the intervention is successful, and if the plan is met with resistance from the child, they pivot to a different an intervention with better results. She said her goal is not to teach compliance, but rather, help children discover an easier path of accomplishing tasks.
“If there is a behavior modification that a kid is not a fan of, then it's my job and responsibility to find something that they are comfortable with, and then I think another, that first and foremost, that's always my answer, because if you're saying no, it's for a reason.”
Controversial past
Overmeyer said she first heard about ABA while doing her own research for interventions. An acquaintance advised her against doing a Google search of the therapy’s history — advice she's thankful she heeded.
Manieri said that’s because the framework for ABA’s early beginnings stem from the psychology and science of Dr. Ole Ivar Loovas, who critics say presented a punitive-based behavior modification framework.
“I think if you look far enough back in any field history, you’re going to find things that are different or not as accepted or ethical. But for now, the framework stands for Applied Behavior Analysis to focus on empowering the individual who’s participating in the therapy so things like working on what’s motivating for that person," Manieri said.
Overmeyer remembers feeling overwhelmed before her son started ABA.
“ABA completely changed the trajectory that my son was going on, because without it, we would probably still not be potty trained. We'd still be getting into dangerous situations. He wouldn't be as independent as he is. He has so many independent functioning skills now, and it's completely changed. It's completely changed his life.”
In waiting
Manieri said there’s one thing she would change about the current state of ABA services is its accessibility. Families in Central and Southern Illinois are facing a shortage of autism service providers, a need felt acutely by families living in rural communities, she said. A Bloomington pediatrician stated the ratio of clients to providers is 47,000 to 1.
“So having more spaces available, or more options for things like telehealth," Manieri said, adding that access for services without being physically in person would increase access.
Lifelong Access also offers Family Treatment Guidance, a grant-funded program for families waiting for a diagnosis and in need of direct services, or who just need a little extra support.
Insurance will only cover ABA services if there’s an autism diagnosis.
"[That] really limits the amount of participants, because not everybody with challenging behavior or with behavior that could benefit from ABA has an autism diagnosis. There's a lot of other diagnoses that could benefit from ABA as well," Manieri said.
