Gov. JB Pritzker on Wednesday plans to sign an executive order to restrict the mass collection and sharing of autism-related data for Illinois residents, in response to the country’s top health secretary’s rhetoric around the cause of autism.
The executive order comes after Kennedy Jr., the U.S. Health and Human Services Secretary, recently said he would undertake a “massive testing and research effort” to determine the cause of autism, including an investigation into whether any environmental factors are causing the development disorder.
The governor’s office said the executive order is in response to rising concerns about efforts to create federal autism registries or databases without legal safeguards or accountability. With Pritzker’s signature, Illinois will become the first state to formally restrict the collection or sharing of autism-related data absent legal or medical necessity.
“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” Pritzker said in a statement. “As Donald Trump and DOGE threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.”
A draft of the executive order obtained by the Chicago Sun-Times says Illinois state agencies may not collect or disclose personally identifiable autism-related data unless it is required for care, legal compliance or program eligibility, and must always follow privacy and data rules. Contractors, vendors and grantees who work with state agencies are also covered by the order, and won’t be allowed to collect, store, or disclose autism-related data. All disclosures will be required to be “limited to the minimum amount of information necessary to meet the legal requirement,” and should also be anonymous when possible, the order says.
Kennedy angered many with autism, and their loved ones, when he called it a “preventable disease” and an epidemic. The National Institute of Mental Health calls it a “neurological and developmental disorder that affects how many people interact with others, communicate, learn, and behave.”
He also called autism a “tragedy” that “destroys families.”
“These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use the toilet unassisted,” Kennedy said at an April press conference. He later clarified that he was referring to people with “profound autism.”
In a Cabinet meeting with President Trump last month, Kennedy said his effort would be completed by the fall and would involve hundreds of scientists. Kennedy has linked vaccines to autism — a widely discredited theory. Trump agreed.
“There’s got to be something artificial out there that’s doing this,” Trump said at the meeting. “If you can come up with that answer, where you stop taking something, eating something, or maybe it’s a shot. But something’s causing it.”
Contributing: Associated Press
