Illinois becomes first state to restrict collection of personal autism records

PEORIA (25News Now) - Illinois is taking action against the nation’s top health agency and its plan to compile information on people with autism.

Governor JB Pritzker signed an executive order Wednesday that restricts state agencies and departments from sharing personal information about people with autism. It states that personally identifiable information may only be shared when legally required, necessary for care, or with written consent.

The Governor’s office said the executive order made Illinois the first state to make that restriction.

The order is Pritzker’s response to Health and Human Services Secretary Robert F. Kennedy Jr’s plan to collect information for autism research through sources like pharmacy chains and personal devices.

“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.”

EP!C is a Peoria nonprofit that supports people with disabilities in all aspects of life.

Marketing Director Ashley Schreck said EP!C is not government-operated and has always abided by the Health Insurance Portability and Accountability Act (HIPAA). She believes the executive order can help other entities not covered by those federal requirements protect members.

“Just because [a person has] a disability and this is a focus on something, doesn’t necessarily give [the government] the right to all of a sudden start collecting this data,” Schreck said. “If you don’t want data to be collected about yourself, then we should consider how people with cognitive differences would feel as well, because they have a say.”

Schreck also corrected RFK Jr.’s claim that autism is a “preventable disease.”

To her, it’s an incurable medical condition. Although she also believes it deserves more funding. She said the wait to get diagnosed with autism can be several years long.

“There’s still a lot of research and a lot of support that needs to be done, so we’re behind any support that [the government] wants to give, but it can be confusing to call it a disease or to consider it something other than a medical diagnosis at this time,” said Schreck.

Schreck said she has not encountered a client who hesitated or avoided diagnosis out of fear that their medical information could become available. She hopes people don’t become afraid to get diagnosed because of the White House’s plan to collect autism-related data.

The Governor’s office said the new executive order builds on Illinois’ history of disability rights advocacy in the state, including the Dignity in Pay Act, banning discrimination in housing selection, and a record level of funding for disability services.

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