RFK Jr.’s Autism Registry Proposal: Understanding the Implications for ABA Companies
Robert F. Kennedy Jr., now serving as Health Secretary, has proposed the creation of a national autism registry. The stated goal: to identify environmental and other contributing factors behind autism diagnoses through a large-scale, data-driven research initiative. While the concept isn't new—registries exist for cancer, cerebral palsy, and other conditions—the autism community and ABA providers are watching closely, with a mix of curiosity and concern.
What the Registry Intends to Do
According to RFK Jr. and NIH Director Jay Bhattacharya, the registry would consolidate existing medical, insurance, pharmacy, and possibly even fitness tracking data into one central database. The objective is to support what Bhattacharya calls "the highest quality proposals" for autism research. These will range "from basic science to epidemiological approaches, to other more applied approaches" aimed at understanding, treating, and managing autism. Bhattacharya has also acknowledged autism’s variability across individuals, reflecting some awareness of the spectrum.
The timeline is ambitious—results are expected by September. Experts have expressed skepticism, noting that quality research, especially at this scale, typically takes years, not months. Still, the potential is there, assuming it’s implemented thoughtfully.
What Makes This Different from Existing Registries?
Registries for other conditions already exist. Cancer surveillance programs like SEER have been around for decades. Similar databases for conditions like cerebral palsy, Alzheimer's, diabetes, and rare diseases are used for planning and public health—not broad federal surveillance.
This proposal is different because of:
- The scale and centralization of data
- Unclear policies around consent and privacy
- Concerns about framing autism as something to "fix"
The Privacy and Consent Debate
ASAN (Autistic Self Advocacy Network) expressed strong concerns. Their statement highlights unanswered questions: how autistic individuals will be identified, whether identifying info will be included, what kind of notice people will get, and if there's any way to opt out.
CBS News reported that data sources could include medical billing, prescription history, and even personal devices like smartwatches. Without clear guidelines, this raises serious ethical questions.
ASAN also pointed out that this proposal comes from an administration whose past language about autism has been called out as eugenic and unscientific. That, paired with the lack of clarity, adds up to a lot of justified concern about misuse of data.
States That Already Track Autism Through Registries
Seven states already have some type of autism reporting or registry system:
- Delaware
- Indiana
- North Dakota
- New Jersey
- Rhode Island
- Utah
- West Virginia
These are typically state-run, used for public health planning, and often include informed consent provisions.
New Hampshire had one, but it was repealed in June 2024 when Gov. Chris Sununu signed legislation requiring all registry data to be destroyed. That decision was driven by privacy concerns and lack of transparency.
Impacts on ABA Companies
1. Communication with Clients
Families are going to have questions. ABA companies should be ready with transparent, straightforward answers about their data practices and how (or if) they’re involved in the registry.
2. Regulatory Preparedness
If registry participation becomes tied to Medicaid or insurance compliance, providers could be facing new reporting burdens. It’s smart to review your current privacy policies now.
3. Funding Focus
RFK Jr. is clearly focused on prevention and causes. That could pull funding away from services and into research, which may hurt small and mid-sized ABA practices depending on public payers.
4. Public Understanding of Autism
There’s a growing divide between seeing autism as something to “cure” versus something to support. ABA providers should double down on education and clarity with families to reinforce that they’re there to help, not to change who someone is.
Balancing Concern with Context
It's important to keep perspective. Data registries, when run with transparency, consent, and community input, can lead to better care. But this proposal still lacks the critical information families and providers need to feel confident.
If it's co-designed with the autistic community, has real privacy protections, and avoids pathologizing language, it could serve as a useful tool. But until those things are confirmed, caution is absolutely appropriate.
What ABA Providers Can Do
- Track updates. Follow HHS, advocacy groups, and trade organizations.
- Communicate clearly. Don’t ignore client concerns—be ready to discuss them.
- Protect privacy. Review your policies and ensure you're covered legally and ethically.
- Speak up. If a public comment period opens, participate. Your input matters.
Final Thoughts
National autism registries aren’t inherently dangerous, but how they’re handled makes all the difference. The autism community—and ABA providers—need transparency, respect, and safeguards. If we don’t get that, this could create far more problems than it solves.
