May 31, 2025
Six weeks ago, the autistic community sounded the alarm when U.S. Health and Human Services Secretary Robert F. Kennedy, Jr., called autism a “preventable disease” caused by unknown “environmental toxins,” and vowed to root out its causes within six months. Shortly thereafter, the head of the National Institutes of Health (NIH) announced that it would begin amassing private medical records from commercial and federal databases, including those operated by the Centers for Medicare and Medicaid Services (CMS), to provide health data for Kennedy’s proposed autism study, according to NPR.
This proposed NIH-CMS database would reportedly include information from wearable health devices, insurance claims, and online medical records. An NIH official said, “The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies.”
Kennedy initially said the NIH-CMS database would fuel a series of research studies to “identify precisely what the environmental toxins are that are causing” autism by September; he recently pushed back that date by six months or more. Meanwhile, autism scientists, medical practitioners, and advocates have expressed concern and even outrage over Kennedy’s apparent dismissal of existing autism research and the recent resignation of a top NIH scientist who accused the Kennedy-run organization of research censorship.
Though Kennedy insists the database is not an “autism registry,” privacy concerns remain high. Currently, autism databases do exist in seven U.S. states, including Delaware, Indiana, North Dakota, New Jersey, Rhode Island, Utah, and West Virginia. However, rules of consent for these state databases set them apart from the NIH-CMS database, which reportedly pulls in medical information from insurance claims and medical records without first securing patient consent.
In its May 22 MAHA Report, Kennedy’s MAHA Commission confirmed its plans to “expand the NIH-CMS autism data initiative into a broader, secure system linking claims, EHRs, and environmental inputs to study childhood chronic diseases.” Details remain unclear, however ADDitude recently asked readers to share their thoughts and reactions to this news.
Overall, a majority of the 194 respondents expressed privacy concerns, citing possible violations of HIPAA laws in relation to the NIH-CMS database. They also remained largely unconvinced that this database could unlock answers about the causes of autism within 6 to 12 months, considering that global researchers have been working to solve that puzzle for decades.
Some respondents reported experience with state-level databases and expressed a desire for the NIH to institute a nationwide support network for autistic people and their families, but most expressed skepticism that this database would achieve that goal. Following are more than a dozen comments shared by ADDitude readers.
“Nothing About Us Without Us!”
“I believe that collecting and studying medical records related to autism can be valuable — but only if it is done ethically, with full transparency, and with the informed consent of individuals and families. Trust, privacy, and the protection of autistic people’s rights should be at the center of any such effort.”
“I have not knowingly participated. But being AuDHD and on Medicaid for ADHD makes me very much a part of this. This makes me very nervous. I feel more anxiety about discrimination than I do hope about research breakthroughs.”
“I understand the exceptional possibilities of researching, connecting, and resourcing families touched by autism. However, (this database) must be paired with mandatory ethical guidelines and government-backed regulations to ensure that families, students, job applicants, etc. are not discriminated against if their status can be ‘looked up.'”
“Voluntary registration to connect with others: Great idea. Government oversite of such a registry? No way. Every administration has its own agenda, and you have no way of knowing how the information will be used. It smacks of lack of privacy, lack of safety, lack of internet security, and especially the possibility for abuse of power over the vulnerable.”
“Both my college-aged and teenage children who are autistic are against the idea of a registry. They feel it could be used to track them and their personal information without their consent. They also feel this is preferred more by parents than actual autistic people, who often do not get to voice their experiences to professionals. Many teenage and adult autistic people are begging for a voice in this conversation!”
“Connecting to supports is important but a nationwide registry is not necessary to facilitate this. It could (and in my opinion, would) be used for purposes that would not benefit and could cause major harms to the families and/or the children who are on the ‘list.’ This is a major moral, ethical, and privacy issue. What kinds of data management would be put in place to ensure that individuals as well as families and communities (especially Indigenous peoples and other vulnerable communities) have control over how, when, where, and why the data is accessed?”
“How about a voluntary registry? Long-term data is good, but there needs to be consistency and confidentiality. This should not be done without full consent of the people being studied. Nothing about us without us!”
“I am fearful that a national registry of those identified on the autism spectrum could be used against them rather than to help link them to supports.”
“I am horrified as I fear for an unjust use of this data. As a clinical therapist, I am almost reluctant to record ADHD and ASD as diagnoses. This is a frightful reversal to our cultural values in which I grew up.”
“I feel like the idea of an ‘autism registry’ is being created for the wrong reasons. While it may be presented as a tool for research or support, it raises serious concerns about privacy and potential misuse. A centralized list of autistic individuals could easily be weaponized — whether intentionally or through systemic bias — and used to deny people opportunities in areas like employment, housing, education, or even healthcare. It could lead to increased surveillance, reinforce harmful stereotypes, and deepen the stigma that already exists around autism.”
“Most of the current communities that provide services to autistic individuals are the de facto registries and are also (in theory) under HIPPA disclosure standards. I do not trust that setting up a brand-new registry would be up to that standard of protecting the rights and privacy for individuals and families.”
“I support the opportunity for connections, but the availability for others to use personal medical data without consent is abominable. I fear this information will be used against people in hiring and in obtaining benefits. I have several autistic co-workers, and I am scared for them.”
“If this was for research only, or to sign up for some valid benefit, it wouldn’t feel so ominous. But the way this is being handled, it feels like a target list, and I don’t trust that those added to these lists won’t suffer in some way or another, like loss of economic opportunities.”
“It feels like an invasion of privacy to force individuals into a registry. It also further perpetuates the narrative that autistic and neurodivergence is a problem or needs to be ‘fixed’. It truly brings me despair. We deserve better, and everyone deserves education on things they don’t personally relate to/are directly related to.”
“The amassing and studying records are steps of good science. But I don’t trust the intentions, the word, or the medical judgement of the people who want to do the amassing and studying in this case. I hope those with legal standing will try to stop these actions.”
Autism Registry Proposed by the MAHA Commission: Next Steps
- Analysis: MAHA Report – 3 Takeaways for the ADHD Community
- Read: RFK Jr., Is Spreading a Dangerous, Ignorant Myth About Autism
- Learn: MAHA Commission Means Fear, Stigma, Health Threats for Two-Thirds of ADDitude Readers
- Background: MAHA Commission Draws Swift Criticism, Condemnation
SUPPORT ADDITUDE
Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.
Updated on June 3, 2025