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Recently, Robert F. Kennedy Jr., the U.S. Secretary of Health and Human Services, announced new plans to collect nationwide data on people with autism and related conditions. The goal, he said, is to better understand these individuals’ needs and improve the services available to them.

However, many have raised concerns about how this data will be used and who can access it. Families worry that the government wants too much control over their private medical information and fear it could be used in a way that stigmatizes their children, limits their opportunities, or opens the door to discrimination.

While better services are needed, many parents believe that data collection must come with clear safeguards and transparency to truly support the autism community.

Illinois Governor JB Pritzker

This is why In a bold move to protect families, Illinois Governor JB Pritzker has signed a new order that stops outside groups and government agencies from collecting or sharing private medical data about people with autism—without clear permission.

Many parents in Illinois are worried about how autism-related information is being tracked and used.

Protect the rights of families and individuals with autism

In a decisive move to protect the rights of families and individuals with autism, Illinois Governor JB Pritzker signed a groundbreaking executive order that restricts the unauthorized collection, storage, and sharing of autism-related medical data.

Pritzker emphasized that “Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” underscoring the state’s commitment to defending these fundamental rights.

Also, voicing concern over broader trends threatening individual freedoms, pointed to figures like Donald Trump and the rise of emerging digital surveillance technologies, he asserted that “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.”

Illinois not only strengthens its stance on protecting private medical information but also sets a clear precedent for other states, ensuring that individuals with autism and disabilities are safeguarded from potential exploitation.

Illinois Autism Center

As autism research continues to evolve and awareness spreads, Illinois Autism Center remains dedicated to supporting families and advocating for the rights of individuals on the spectrum. We are committed to providing resources, education, and guidance to ensure that everyone understands the importance of both privacy and support in fostering positive outcomes for those with autism.

For treatment options and tailored support, don’t hesitate to get in touch with us.