SHAWNEETOWN, Ill. — Families and advocates are praising action taken to protect people in Illinois who have autism. On Wednesday, Gov. J.B. Pritzker signed an executive order aiming to shield Illinois residents from unauthorized data related to autism being collected or shared.

Southern Illinois Resource and Advocacy Center said Gov. Pritzker's executive order keeps the autism families they serve safe.

The order comes as Health and Human Services Robert F. Kennedy Jr. is floating the idea for the creation of a disease registry that tracks people diagnosed with autism. Kennedy claims the plan is still in effect but will be "voluntary" for participants.

In the case that voluntary participation turns mandatory, families in Illinois say this executive order gives them peace of mind.

Kennedy's autism database proposal was met with concern from many autism families and advocates.

That includes Megan Ragan, executive director of Southern Illinois Resource and Advocacy Center.

“Terrified, honestly, I literally thought, have thought about it for several weeks about, is there any way that I can get my son's medical records redacted to show that he does not have this diagnosis?” Ragan said.

She said the move could threaten the safety of her child and the clients she serves. After Pritzker’s executive order, she breathed a sigh of relief.

“That brings them some sort of peace of mind that you know somebody in higher authority, I guess I should say, at least, is trying to. Look out for our kids, our family members, our spouses,” Ragan said.

Southern Illinois Resource and Advocacy Center said Gov. Pritzker's executive order keeps the autism families they serve safe.

The Southern Illinois Autism Society agreed. In a statement, the organization said, "This is a win for privacy, inclusion, and progress. We're grateful the governor is listening to the autism community and taking concrete action."

Ragan hopes the neighboring states will take a similar approach.

“I do hope that individual or that other states will follow suit in this, because, you know, if we want to do autism research, that's OK. We can do that without the personal health information of individuals,” Ragan said.

When it comes to that research, Ragan wants people with autism involved in the planning.

“We have to really tread lightly, because when we talk about it in the wrong way, we end up pathologizing something that is not a disease. It's not a disease, it's not a sickness,” Ragan said.

Illinois is the first state to formally restrict the mass collection or sharing of autism-related data, unless legally or medically necessary.