Kansas training program empowers families with autistic children
A boy plays with a wooden numbers puzzle. Sensory exercises like this are often used in special education classrooms. (Getty Images)
TOPEKA — An autism spectrum diagnosis can be confounding for some families.
For years, parents and caregivers had little support or guidance to provide the best outcomes for children with autism.
Often, the most they were given was a packet of information, said Linda Heitzman-Powell, a professor in pediatrics for the University of Kansas and a lead researcher for an autism training program.
“It always felt like that we were setting them adrift at sea with no sail and no oars,” Heitzman-Powell said on the Kansas Reflector podcast.
But roughly 25 years ago, Heitzman-Powell and a small handful of doctors began training service providers in how to foster a stable family when a child has an autism spectrum diagnosis.
Parents expressed interest in the training, so Heitzman-Powell, with federal grant funding, created a parent-focused program through the University of Kansas Medical Center and studied its efficacy. The program is called OASIS, or Online and Applied Systems of Intervention Skills.
“It’s teaching parents the fundamental skills or procedures or practices that are inherent in an evidence-based approach, so they can take it with them in life, whether it be to grandma’s house, whether it be, you know, going trick-or-treating, whether it be going to get their hair cut or going out to eat,” said Heitzman-Powell, who was not speaking on behalf of the KU Medical Center. “I just think it’s important that parents are empowered.”
A recent federal funding award has allowed the program to expand further and develop a Spanish-language ambassador framework. The program previously included bilingual resources and cultural accommodations, Heitzman-Powell said, but the funding allows researchers to go deeper.
That means considering how Hispanic and Latino families obtain information, who families will trust and listen to and how to provide further support.
“Our impetus was families,” Heitzman-Powell said. “It always has been. It’s identifying a need of families in the field and then trying to develop programs that can address that, and then diligently working to get that program back out into the field.”
The program’s ultimate purpose is to develop evidence-based strategies that can be easily incorporated into everyday life, she said.
Part of the purpose, too, is advocacy.
In Heitzman-Powell’s work, the need to correct misperceptions began with debunked theories. One was dubbed “refrigerator moms,” an untrue claim that emotionally cold mothers cause autism in children. Another theorized that a gluten- and casein-free diet could prevent autism, which has not been backed by science.
Correlation is not causation, Heitzman-Powell said.
She has run into similar rhetoric in unsubstantiated claims that certain vaccines cause autism, including directly from the current top U.S. health official.
Autism encompasses a wide range of different behavioral, intellectual, developmental and emotional and mental health symptoms.
New fads always arise, Heitzman-Powell said, including ones that tout purported cures to autism. There are none, but autism is treatable.
“The cure that we know works is a lot of hard work,” Heitzman-Powell said. “And it’s being able to break all those behaviors down into their incremental pieces and systematically teaching them and putting them back together until you come up with this really wonderful, warm, kind, caring, beautiful, little individual that has the ability to be as independent as possible.”