Illinois Gov. JB Pritzker has signed an executive order safeguarding the medical records of autistic people in Illinois. The order follows a recent federal proposal by the National Institutes of Health (NIH) and the Department of Health and Human Services (HHS) to create a national autism database. It prevents state agencies from sharing autism-related information with anyone outside of state government without a clear reason and informed consent.

The order also clearly states that “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.”

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” Pritzker said in a press release . “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.”

After backlash to the database proposal, HHS Secretary Robert F. Kennedy Jr. attempted to clarify it, saying he would create an autism database using Medicare and Medicaid data. The goal is to discover a “cure” for autism, despite the fact that autism is a naturally occurring condition and not believed to have a cause.

Kennedy also made statements suggesting that he believes autistic people’s lives are worthless and harmful. In one speech, he said of autistic children, “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 a toilet unassisted.” He also said, “Autism destroys families.” Doctors and autism advocates say this wildly and insultingly mischaracterizes the experiences of autistic people, and falsely paints their lives as a burden to themselves and others.

The HHS’s statements and actions make Pritzker’s order necessary, according to Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. “There’s a lot of mistrust now between the autistic community and HHS and the administration because of the way that Secretary Kennedy is talking about our community,” Gross told Prism. “Which was one reason I was really excited to see Governor Pritzker push back on that in the executive order.”

An HHS spokesperson told Prism in an emailed statement that the autism database would “enable researchers to analyze large-scale, de-identified data to better understand the causes of conditions like autism and chronic diseases.” The statement also said that “data with personal identifiers are subject to federal privacy laws and regulations” and that the autism data platform “would be fully compliant with these laws and regulations.”

Gross, however, remained concerned that the data would not be adequately protected. She worried that people’s data could be linked to them and used to enable discrimination.

Gross also told Prism, “We feel the data needs to be used for good, for research that will positively impact the autistic community.”

“[What] we fear it’s going to be used for instead is to create a bogus link between autism and vaccines, because we know that that’s Secretary Kennedy’s existing belief,” Gross continued.

“I don’t think [Kennedy] knows enough stories and knows enough about the community to make comments like he’s made,” said Kimberly L. Johnson, former president of Chicagoland Autism Connection and board president of disability advocacy group The Arc of Illinois. Johnson pointed to her own son, now 32 years old, who was nonverbal as a child and has now graduated from college and lives independently.

“It’s just really frustrating,” she said, “when you hear comments coming from someone who is now in charge of this very delicate area for families and hasn’t even been in office long enough to even have conversations [with the autistic community].”

Johnson said that in contrast, she’s been pleased with the way that Pritzker’s office has reached out to autistic and disabled organizations and individuals. Advocates with the Arc of Illinois didn’t know an executive order was coming necessarily, Johnson told Prism, but Pritzker, “asked for our opinion” on autistic issues.

Johnson also pointed out that Pritzker has been strongly advocating against Medicaid cuts . The Republican Congress is currently proposing $880 billion in cuts to Medicaid and the Affordable Care Act, which would leave some 13 million people without insurance. Medicaid “is the lifeline of services for people with disabilities,” Johnson told Prism. Pritzker, Johnson said, understands “that the state could not take that weight if Medicaid services were cut.”

HHS statements about data collection on autistic people have been “alarming,” according to Ly Xīnzhèn M. Zhǎngsūn Brown, senior adviser at Autistic Women & Nonbinary Network. They expressed deep concern about the potential misuse of a federal autism database, citing historical abuses of data collection against marginalized groups.

“What do you use a registry for? Perhaps to increase surveillance on people, to round people up, or to target people for caging or elimination,” Zhǎngsūn Brown said. “That might sound hyperbolic, but if you look historically and in other countries, this is what is happening, and we don’t want that to happen here.”

Federal officials have stated that any database would use de-identified data and comply with privacy laws, emphasizing that individual identities would not be tracked or monitored. However, in recent public statements and letters to HHS, advocacy groups have continued to communicate concern about the adequacy of these safeguards and the potential for misuse. They expressed concern about the Trump administration targeting trans people and the way that has intersected with policies targeting or denigrating autistic people.

Trans and nonbinary people are up to six times more likely to be autistic than cis people. Some right-wing legislators have been misusing this finding to argue that nefarious trans ideologues are misleading innocent and incompetent autistic children into becoming trans. This “undermines the autonomy and dignity of autistic trans people and further contributes to the criminalization and the demonization of the trans community,” Zhǎngsūn Brown said. “So there are very, very real-world impacts that are dangerous and potentially deadly for our communities coming out of the current administration’s rhetoric.”

Pritzker has also been proactive in trying to protect trans rights in Illinois. The state has passed laws making it easier for trans people to change gender markers on state ID and has guaranteed trans women access to women’s bathrooms in the workplace. State-level pushback against discriminatory federal policies can be helpful, according to the advocates Prism spoke to, who all agreed that Pritzker’s executive order would help protect autistic medical records and autistic people.

Advocates say that solidarity is also important. States cannot fully counteract federal policy. But when the head of HHS is spreading misinformation about autism, they said it’s vital that other leaders push back and model informed policy based on actual research and input from autistic people.

“I would love to see other states adopt similar executive orders,” Gross said, “both affirming the state government’s belief that autism is not an epidemic or something to be terrified about, and also protecting the data rights of autistic people and our data privacy.”

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