RFK Jr. Is Creating a National Autism Registry — These States Already Have Them
State autism registries are used to help facilitate research and establish programs for parents.
Published April 23 2025, 1:14 p.m. ET
In April 2025, Health and Human Services Secretary Robert F. Kennedy Jr. announced the creation of a new disease registry that will also track Americans with autism. According to CBS News, in order to facilitate this, the National Institutes of Health will collect data from private medical records from a number of federal and commercial databases. "The idea of the platform is that the existing data resources are often fragmented and difficult to obtain," said NIH Director Dr. Jay Bhattacharya.
Dr. Bhattacharya also said that somewhere between 10 and 20 research groups will be given access to the autism registry in order to produce studies that will be used to treat and manage autism. The research will account for the "range of manifestations" of autism. In the U.S., there are already several states that have mandatory autism registries.
These are the states that have a mandatory autism registry.
The state of Delaware has an Autism Surveillance and Registry Program that "requires any physician, surgeon, dentist, podiatrist or other health care practitioner who diagnoses a child with autism under the age of 18 to report this information," via the registry. Its purpose is to "collect basic descriptive information on the individuals with autism, to track changes in prevalence over time," which helps plan services and facilitate autism research.
Similar to Delaware, Indiana requires Autism Spectrum Disorders (ASDs) to be reported via Indiana’s Birth Defects and Problems Registry (IBDPR) at the Indiana State Department of Health (ISDH). This information is collected to help parents get the specialized healthcare they need and to provide education and awareness.
New Jersey state law "requires licensed health care providers to register any child with Autism Spectrum Disorder (ASD) that they diagnose or follow, who is a New Jersey resident, under the age of 22." It was created to "better understand autism or ASD in New Jersey and to link families to available services and supports." This information is kept private.
In 2016, New Jersey did a study comparing state autism registries. They found that Rhode Island defines autism as a birth defect and has two types of autism registries. Children under the age of 5 who are diagnosed with autism are required to register in the Birth Defect Registry. This study also stated that West Virginia was the first state to enact an autism registry. "Since 2004, it requires that only newly diagnosed persons be registered."
Is RFK Jr.'s national autism registry legal?
While a national autism registry is legal, the means of procuring the data raises red flags when it comes to privacy. The Health Insurance Portability and Accountability Act Privacy Rule "requires appropriate safeguards to protect the privacy of protected health information and sets limits and conditions on the uses and disclosures that may be made of such information without an individual’s authorization," per the Department of Health and Human Services.
Some on X (formerly Twitter) are comparing this national registry to the Reich Committee for the Scientific Registration of Serious Hereditary and Congenital Diseases which was established by the Nazis in 1939. It was born from medical killing, which was used to justify the murder of those they deemed unworthy of living, per The New York Times.