Autism Registry?

There’s been a lot of buzz lately about a new “registry” tracking people with autism. Some folks are saying it’s brand new, or that it’s something Robert F. Kennedy Jr. is starting. But here’s the truth:

📌 This is not new—and Indiana has already been involved for years.

RFK Jr., isn’t responsible for the initiation of this registry, however he is very likely to be using the registry to determine the causes of autism by September, as promised.

This is also how he and others within the federal government have been able to conduct studies on the rates of autism across the country.

Let’s walk through what’s actually going on—without the hype or confusion.

🧠 What is this “autism registry” really?

It’s officially called the Autism and Developmental Disabilities Monitoring (ADDM) Network, and it’s run by the Centers for Disease Control and Prevention (CDC). The program started back in 2000, and Indiana has been a part of it since around 2023.

It collects data to:

• Track how many children have autism spectrum disorder (ASD) or cerebral palsy (CP)
• Learn when and how early kids are diagnosed
• Compare how common these conditions are in different parts of the country
• See how these numbers change over time
  

✅ Learn more from the CDC: ADDM Network Overview »

🔁 Federal and Indiana goals are the same- Likely just, copied and pasted...

The Indiana Department of Health is fully aligned with the CDC. The state’s program lists the exact same goals—almost word for word.

That means this isn’t a different or separate project. It’s one part of a national network working together behind the scenes.

📄 See Indiana’s official page here:
Autism and Developmental Disabilities Monitoring in Indiana »

🧐 How do they collect the data?

They don’t ask families directly. Instead, they make agreements with:

• School districts
• Early intervention programs
• State health departments

These agreements (called MOUs) let them access your child’s records—often without you even knowing.

📘 Learn more about data access here:
How ADDM Sites Access Data »

🚨 Why should Hoosiers care?

Because Indiana has a major health privacy problem. It’s called the Indiana Health Information Exchange (IHIE)—a massive system that stores medical records for millions of Hoosiers.

Here’s the catch:
You’re probably in the system—and you weren’t even told.

And it gets worse: there’s no true opt-out. (More info on this in the future)

That means registries like ADDM could pull from databases like IHIE to get even more data—without your permission.

🔒 That’s not okay. Health records should belong to you.
Not the State.
Not the Federal Government.
Not the hospitals.
Certainly not a private non-profit like IHIE
 
📚 Learn more about the IHIE:
https://www.ihie.org

Worse yet, there are other registries, for vaccines, for birth defects, and more... and it's all done in compliance with HIPAA.

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⚖️ Can this data help?

Some families, researchers, and autism advocates do find value in the work of the ADDM Network.

In fact, in 2023, the network expanded from 11 to 16 sites—including one in Indiana—marking the first major growth since 2010.

This expansion was celebrated by Autism Speaks, which noted that the data helps identify gaps in diagnosis, improve screening tools, and develop programs for underserved communities. ADDM’s research has helped highlight disparities in autism diagnoses, including among Black, Hispanic, and Asian communities—giving us a clearer picture of who is being missed and why.

📊 Read more about that expansion here:
Autism Speaks: ADDM Network Expansion »

While this data can serve a public good, we must also protect individual rights. Even helpful programs become dangerous when people aren’t told they’re part of them or when there’s no way to say no.

Supporting the autism community and respecting medical privacy are not opposite goals.
In fact, the best solutions will always do both.

✅ What needs to change?

We believe Hoosiers deserve better.

That’s why we have been calling for:
📝 An opt-in system—where families give permission before data is shared.
🛑 Stronger laws to stop automatic enrollment in health registries
📢 Public transparency about who is collecting what, and why

Health surveillance is growing fast. If we don’t stand up now, we may lose control over our most personal information—our health.

Sign the petition now:
Hands Off My Health Record

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Let’s keep Indiana in control,
Let’s protect our families’ data,
And let’s make informed decision-making the standard again- including with our privacy.


In Liberty,
Ashley Grogg, MSN-RN, BC-FMP
Founder, Hoosiers for Medical Liberty
📞 260-267-0098
📩 [email protected]
🌐 www.h4ml.org