Local advocates optimistic about federal focus on autism, if done right

COLUMBIA, Mo. (KMIZ)

The head of a local program focused on treating patients with autism spectrum disorder said last week that he hopes plans for a federal database can help uncover the cause of the condition, but it should protect patients' safety and privacy.

The National Institutes of Health plans to work with the Centers for Medicare and Medicaid Services to create an autism registry to determine the root cause of autism spectrum disorder.

The Department of Health and Human Services says the two agencies will create the database using insurance claims, electronic medical records and data from wearable devices with health sensors, like smartwatches.

It will focus on Medicare and Medicaid enrollees, about 36% of Americans, and follow autism diagnoses, with plans to expand the research to other chronic health conditions

This move follows ongoing debate, including comments from Health Secretary Robert F. Kennedy Jr., who has shifted positions on the idea of establishing a registry.

Myles Hinkel, executive director of the Thompson Foundation for Autism and Neurodevelopment, spoke with ABC 17 News last week at a progress event for MU Health Care's new Thompson Center building. The center treats patients with autism spectrum disorder.

"I think we are all in favor of looking into root causes, looking into different support in therapies that helps kids and families of the autism spectrum but we're not in favor of doing that in a way that either jeopardizes security, jeopardizes their personal health information or jeopardizes that data in anyway," Hinkel said.

Uncovering the root causes of autism remains complex and ongoing. Doctors say there are likely many causes.

"It's something that has been studied for quite a few years, it is such a wide variety of symptoms, likely a wide variety of causes, likely multiple genes, potentially some underlying environmental causes as well, the short answer is we don't know yet," Hinkel added.

The new Thompson Center Foundation's overall goal is to be a source for families that navigate autism.

"At the federal level, things are changing on a daily basis, messaging is coming out on a daily basis, if not an hourly basis," Hinkel said. "What we want to do is to be an evidence-based, very fact-based resource for our kids and families."

Eric Cronacher is the father of 15-year-old Ashton Cronacher, who has Down syndrome and is also on the lower end of the autism spectrum.

Eric says he first noticed signs when Ashton was younger and had trouble letting go of unfinished tasks.

"You try to put somebody on a registry and say its who this person is, that a tiny snippet of who that person is," Eric said.

He worries a federal autism registry would do more harm than good and would treat it like a disease.

"I really do take offense to what they're trying to do in the sense  you're trying to limit my son and you're trying to label him and you're trying to make it a disease not a disability," Eric said.

Autism research has been ongoing at the federal level for years, and Eric believes that’s the way it should stay.

"The research the federal government does and the cdc and all those things, those are what we use as our tools and our resources as we are trying do our own individual Kennedy said its on the parents to do it, trust me  theres very few special need parents that don't do a ton of research and don't try to better their child's life." Eric said.