The Sentinel: Illinois becomes the first state to restrict federal access to autism-related data

Illinois becomes the first state to restrict federal access to autism-related data

One in 31 children in the U.S. is diagnosed as being on the autism spectrum.

by Judith Ruiz-Branch
Illinois News Connection

CHICAGO - Illinois is the first state to block the federal government from accessing state data on autism.

The order, signed by Gov. JB Pritzker last week, is in response to federal efforts to create a mass data collection on autism.

Health and Human Services Secretary Robert F. Kennedy Jr. plans to use Medicare and Medicaid data to create an autism registry with the goal of finding the cause of what he called an "autism epidemic." Pritzker's order prohibits the collection in Illinois without consent from an individual or guardian.

Federal agencies said they would protect sensitive health information.

Jeff Chan, associate professor of special education at Northern Illinois University, said along with concerns about accidental disclosure of protected health information, right now there is no single cause or cure for autism and he is skeptical a database could change it

"I don't even know if we will ever find that one, single cause," Chan acknowledged. "There's a variety of factors in play on the genetic side and the environmental side that are all affecting parents and mothers and children, which eventually lead to the expression of those symptoms."

Federal agencies said they would protect sensitive health information. More than a dozen autism organizations and advocates are pushing back against the planned database and any rhetoric claiming autism is "curable" or is caused by vaccines.

One in 31 children in the U.S. is diagnosed as being on the autism spectrum. Chan noted in Illinois the rate increased from one in 333 children in 2002 to one in 51 children in 2023. He added while cases are rising, the numbers are also influenced by earlier diagnosis and improved data collection.

Chan emphasized the importance of oversight of data and interpretation and cautioned about the potential for drawing conclusions from incomplete information or cherry-picking evidence.

"Anyone could collect data and they can interpret it differently, and they can spin it differently," Chan stressed. "That happens all the time. And that's happened in the past, especially about the causes of autism."

Chan advised caution regarding individuals with extreme theories. He acknowledged the difficulty parents and caregivers face in evaluating information and the importance of institutions to help navigate the evidence.

"There's people out there that, for whatever reason, are true believers about a particular narrative about autism," Chan explained. "You have to be a very careful consumer about what you take in and what evidence you choose to believe."

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