Pritzker Signs Executive Order Protecting Autistic IL Residents

ILLINOIS — With the recent creation of an autism database by the U.S. Department of Health and Human Services, Gov. JB Pritzker signed an executive order Wednesday "that protects individuals from unauthorized data collection and sharing by state agencies and ensures that autism-related information is handled only when necessary and with informed consent," according to his office.

Illinois becomes one of the first states to formally restrict the mass collection or sharing of autism-related data absent legal or medical necessity, with the executive order.

"Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination," Pritzker said. "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."

As reported by The Guardian, a number of autism researchers and advocates are pushing back against the database, with a petition gaining nearly 50,000 signatures at Change.org since it was created last week.

HHS has denied the database is a registry, but did confirm to The Guardian that "a sweeping database of autistic people will power a $50m study on autism." U.S. Health Secretary Robert F. Kennedy, Jr. said last week he plans to announce results from the study within months. Kennedy came under fire in February when he referred to autism as an "epidemic."

"Autism is a neurological difference — not a disease or an epidemic — identified by trained clinicians and healthcare professionals, with rising identification rates attributable to improved practices, greater awareness, and expanded access to screening tools," the executive order reads.

RELATED: 'I Have Autism And I'm Not Broken' — Princeton Student Challenges RFK Jr.'s Claims

Under the executive order, 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 strict privacy and data minimization rules, according to Pritzker's office.

In addition, contractors, vendors, and grantees who work with state agencies are also covered by this executive order, and shall not collect, store, or disclose autism-related data. All disclosures must be limited to the minimum amount of information necessary to meet the legal requirement, and should be anonymized where allowed and practicable, the order reads.

"This is a win for privacy, inclusion, and progress," Stephanie Brown, executive director of the Southern Illinois Autism Society, said. "We're grateful the Governor is listening to the autism community and taking concrete action."