Why Autism Advocates Are Fighting Back Against a National Data Registry Proposal

Privacy, Misconceptions, and the Fight for Autism Dignity

A new proposal to collect private medical data on individuals with autism has sparked intense backlash among Colorado’s autism advocates—and for good reason. While pitched as a way to “study and understand” autism through a national registry, the plan raises deep concerns about privacy, consent, and the troubling narrative being built around what autism is.

Statements made by Health and Human Services Director Robert F. Kennedy Jr. have added fuel to the fire. In describing autism as something that’s “destroying families” and suggesting it’s something we’re “doing to our children,” he’s not just offering a plan—he’s spreading a message that many see as harmful and inaccurate.

For families, therapists, and autistic individuals in our community, this isn’t just a policy issue—it’s personal.

What’s Actually Being Proposed?

According to Kennedy’s announcement, the government would begin collecting medical records and other private health data to create a national registry of individuals diagnosed with autism. The stated goal is to support research and find potential causes or interventions.

However, advocates across Colorado and beyond are pushing back, arguing that:

• This violates the right to medical privacy
  
  
• There is no clear ethical framework or informed consent process
  
  
• It promotes the false idea that autism is a disease that must be “cured”
  
  

Advocacy groups are urging lawmakers to step in and block any such data collection unless it is fully transparent, consent-based, and conducted through ethical channels that respect the dignity of those on the spectrum.

Autism Is Not a Problem to Fix

Families who live with autism every day are rejecting the idea that their loved ones need to be “cured.” Autism is a neurodevelopmental condition, not a flaw. Many parents and professionals agree that efforts should focus on support, inclusion, and empowerment—not surveillance or stigmatization.

Statements like those made by Kennedy risk rolling back years of progress toward acceptance and understanding. They frame autism as a tragedy rather than a difference, which only serves to isolate and harm the very individuals these policies claim to help.

Supporting Autism Services in Colorado the Right Way

What families truly need isn’t a registry—they need access to trusted, high-quality autism services in Colorado. They need therapists who understand their children, plans that reflect their individual needs, and a system that values support over suspicion.

At New Dawn ABA, we’re committed to providing personalized, compassionate care to children and families navigating an autism diagnosis. Our approach is grounded in respect, evidence-based methods, and a firm belief that every child has the potential to thrive with the right guidance.

We offer ABA therapy that is built around each child’s strengths and challenges—because supporting families means meeting them where they are, not labeling or tracking them without consent.

Contact Us Today to Learn More About Our Autism Services in Colorado

If you're concerned about access, inclusion, or finding the right support for your child, reach out today. Our team is here to answer your questions, understand your goals, and provide the expert, ethical autism services your family deserves.