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By Nick Mordowanec
Staff Writer
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The fewer than 10 states with mandatory autism registries are getting renewed attention following purported new efforts by U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. to employ a national database to track Americans with autism.
Why It Matters
Kennedy, along with some autism researchers, are warning about a prevalence in autism spectrum disorder (ASD) rates in the past two decades, increasing from 1 in 150 children in 2000 to now 1 in 31 children being identified.
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It has been described by Kennedy as an "epidemic" he claims is spurred more by environmental toxins than genetics. A number of autism researchers have disagreed with his theory, adding that increased awareness of ASD has contributed to higher known levels of prevalence.
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What To Know
On Tuesday, CBS News reported that the National Institutes of Health (NIH)—under the HHS umbrella—was overseeing the launch of a registry to track Americans with autism amid a broader plan to collect patient data for autism research.
That purportedly includes NIH collecting the private medical records of numerous Americans from several different federal and commercial databases to provide research as part of the new study.
Which States Require Doctors to Report Autistic Clients?
Seven U.S. states already have some sort of autism registries: Delaware, Indiana, North Dakota, New Jersey, Rhode Island, Utah and West Virginia.
New Hampshire formerly had an autism database. However, in June 2024, Governor Chris Sununu signed a bill approved by the Legislature, repealing the state's autism registry and directing the Department of Health and Human Services to destroy the individual records contained within the registry.
Amy Marschall, clinical psychologist and autistic person, told Newsweek that a national registry provokes "huge concerns" regarding ethics and consent as it pertains to the federal government.
"What will this information be used for, and what if that purpose changes after the data have already been gathered?" Marschall said. "Historically, governments keeping lists of citizens based on disability has not ended well.
"The statements that this is necessary because autistic people are such a terrible drain on resources is rooted in eugenics. ... Overall, I do not see a benefit to the federal government creating an autism registry. Many state registries lack funding, so although they are unethical, the harm they can do is limited. Federal resources being put to track autistics frankly scares me."
Delaware
Delaware law requires that any physician, surgeon, dentist, podiatrist or other health care practitioner who diagnoses a child with autism under the age of 18 report such information on the Delaware Autism Surveillance and Registration/Autism Registry, overseen by the state's Department of Health & Social Services and Division of Public Health.
All health care practitioners are required to submit annual forms to track changes and to maintain current and accurate information.
Any child diagnosed with autism and under age 18 must be registered.
"The purpose of the Autism Registry is to provide an accurate and continuing source of data concerning autism to provide information to Public Health officials to help to ultimately decrease the autism morbidity burden associated with the disorder," the state's health website states. "The Autism Registry will gather data to assist with: prevalence estimation, cluster investigation, risk factor identification, and outcome assessment."
Indiana
The Indiana Birth Defects and Problems Registry (IBDPR) is a statewide system that collects medical information about children born in Indiana with birth defects and birth issues.
Indiana authorized the IBDPR to monitor birth defects since 1987, when the Indiana Legislature authorized the establishment of a registry. State law requires that doctors, hospitals and other health care providers notify the IBDPR when a child is born with a birth defect.
Information is collected, according to the state, to help parents of infants with special health care needs to receive necessary services; to find different methods to prevent or reduce the impact of certain birth defects; and to identify factors possibly associated with birth defects.
Individuals of all ages are instructed to register.
New Jersey
New Jersey state law requires licensed health care providers to register any child with autism that they diagnose or follow. They must be state residents under the age of 22.
North Dakota
North Dakota's database records all individuals diagnosed with autism regardless of age, with collected information used to complete epidemiological surveys, research and analysis, and provide services to individuals with ASD.
Rhode Island
Rhode Island has two registries.
One is mandated and involves the state's Birth Defects Registry, aimed to identify children with birth defects up to the age of 5.
The other is the Rhode Island Consortium for Autism Research & Treatment (RI-CART), which is voluntary as part of a research project that works with minors and their families.
Utah
The Utah Registry of Autism and Developmental Disabilities (URADD) was established in 2002 jointly by the state's Department of Health and Human Services and the University of Utah Department of Psychiatry.
"URADD uses a passive, population-based system to identify persons with ASD based on a community medical diagnosis of ASD and/or an autism special education eligibility," the state's website says.
West Virginia
The West Virginia Autism Spectrum Disorders Registry (WVASDR) was established in 2002. Since 2004, it has required registration for only newly diagnosed people. However, people of all ages, including newly diagnosed adults, are also required to register.
What Is RFK Jr.'s 'Autism Registry' Plan? What We Know
It remains unclear whether a national registry is actually being implemented and enforced, and what the parameters are in terms of government intervention and Americans having to divulge personal and medical information to the federal government.
Kennedy has hired David Geier, a figure previously criticized for treating autistic children with puberty-blocking drugs, to lead a federal study on the causes of autism.
What People Are Saying
Kennedy said in a statement on April 15: "The autism epidemic has now reached a scale unprecedented in human history because it affects the young. The risks and costs of this crisis are a thousand times more threatening to our country than COVID-19. Autism is preventable and it is unforgivable that we have not yet identified the underlying causes. We should have had these answers 20 years ago."
Richard Angwin, an X user with more than 190,000 followers, wrote: "RFK Jr.'s autism registry is a chilling overreach, tracking private medical data without consent violates HIPAA and echoes eugenics. It's not about health; it's about control. Stop this now."
What Happens Next
Kennedy has pledged September as the deadline for new autism data to be made public.
A Change.org petition began three years ago and has received new signatures as of this week, imploring groups like the American Civil Liberties Union to file lawsuits against "mandatory databases."
Update 4/23/25, 4:46 p.m. ET: This article was updated with comment from Marschall.
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