Gov. J.B. Pritzker (D-IL) signed an executive order to protect the collection and distribution of autism-related data for Illinois residents.
The governor’s move comes after Health and Human Services Secretary Robert F. Kennedy Jr. said he would use data from Medicare and Medicaid to track people with autism. Pritzker said the order was necessary in response to concerns about the creation of a federal autism registry or database without legal protections.
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“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 [the Department of Government Efficiency] 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.”
Illinois is set to become the first state to restrict autism-related data without legal or medical necessity.
According to a draft of the executive order obtained by the Chicago Sun-Times, Illinois state agencies will not be permitted to collect or disclose personally identifiable autism-related data unless required for medical or legal purposes. Vendors and other contractors that work with the state will also be prohibited from collecting sensitive data.
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Kennedy has said the National Institutes of Health will work to identify the cause of autism by April 2026. Within that time frame, he is developing a patient database for people diagnosed with autism spectrum disorder.
Kennedy has drawn fierce backlash over his unproven comments about autism, including calling ASD a “tragedy” that “destroys families.” He has linked vaccines to causing autism, which is a widely discredited theory that has no scientific backing.