Red Flag Alert - United States: The Proposed Autism Registry

United States Health Secretary Robert F. Kennedy Jr.’s “fixed, myopic view” of autism, as described by David Mandell, a University of Pennsylvania psychiatry professor and director of the Penn Center for Mental Health, has progressed to more dangerous territory.

CBS News reported on April 22 that the U.S. Department of Health and Human Services was planning to create a “new disease registry … to track Americans with autism.” According to National Institute of Health director Dr. Jay Bhattacharya, this database will collate private health data gathered from various private sources (apparently without the consent of individuals whose information will be accessed). Secretary Kennedy has stated that he intends to find the cause of autism “by September,” though it is unclear how the registry would achieve that goal. What can be said with absolute certainty is that whenever a state creates a list of names of people considered to be somehow unfit, we are in the danger zone for a genocidal process.

According to Stat, a medical news outlet, the outcry that followed Dr. Bhattacharya’s announcement has led the Department of Health and Human Services to walk back that announcement in a “written statement” on April 24 claiming that it has no plans for an autism registry. The Lemkin Institute has been unable to locate this April 24 statement. As far as we are able to discern, it has not been posted on the HHS.gov website.

Secretary Kennedy’s comments on autism have been hostile and confounding. He has routinely described autism using profoundly negative and stigmatizing language, stating that it “destroys families” and is “an individual tragedy.” At the press conference, he remarked, referring to autistic people, “They'll never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date. Many of them will never use a toilet unassisted.” These assertions are an egregious and illegitimate overgeneralization that stigmatizes both autistic people and people with any other disability. Furthermore, his position that autism is a preventable disease flies in the face of the vast majority of scientific research on the condition. Referencing a recently released CDC report that found an increase in autism rates in some U.S. communities, Secretary Kennedy referred to an “epidemic” of autism in the United States. He also characterized autism as “catastrophic for our country,” thereby linking his research agenda to the right-wing social, moral, and physical contagion hysteria that is behind most of the Trump Administration’s national cleansing policies released since the President took office in January. In this sense, Secretary Kennedy’s approach resembles plans previously spearheaded by the organization Autism Speaks that aimed at eradicating (“curing”) autism by developing a prenatal test for it. The Secretary’s real concern seems to be the reported cost of treating autism, which he remarked at the press conference will rise to $1 trillion per year by 2035.

RFK Jr.’s descriptions of the capabilities of autistic people are not only an inaccurate representation of the vast spectrum of autistic experience, but also a red flag in denying the humanity of autistic people. In creating a threatening, growing monstrosity that must be overcome, he is clearly seeking to unite the American people behind an eradication campaign that could easily have tragic consequences. His language mirrors National Socialist concepts, such as “life unworthy of life” and “useless eaters,” that were marshalled to justify the T-4 mass murder operation (“euthanasia”) of Germans considered by Nazi scientists to be physically, mentally, or “socially” disabled. The T-4 operation, which predated World War II and the Holocaust, was an important stepping-stone in the radicalization of the Third Reich towards a continent-wide mass murder program. T-4 was the first Nazi program to use gas as a means of mass murder. It created an ever-widening criminal conspiracy, involving teachers, nurses, doctors, social workers, parents, neighbors, and so forth, and eventually provided the death camps of the Holocaust with their skilled – and hardened – personnel. It also created a language of ‘mercy killing’ to hide the truly monstrous crimes being committed.

The Lemkin Institute urges the American people, especially the scientific community, to take an unwavering stand against any sort of registry of autistic people (or any other group). We also urge Americans to push back hard against violations of privacy and limits on disabled people's rights to life, inclusion, and respect. Americans must reject the idea that the state should be able to trample these fundamental rights whenever it feels a certain group is a threat to “national strength” or is becoming too costly, as RFK Jr. has made clear he views autistic people to be. If allowed to continue, the upcoming database of autistic individuals will only be used for harm. Evidence of this is not only RFK Jr.’s hostile and misleading, scientifically unsubstantiated statements about autism, or his goal of eradicating it entirely, but also the man he has chosen to lead the study – vaccine denier and overall charlatan David Geier. Geier was disciplined by regulators for, among other things, practicing medicine without a license in Maryland and encouraging autistic children to take the chemical castration drug Lupron. Americans are not safe with such people in power at the Department of Health and Human Services. They certainly should not be trusted with private medical data.

The Lemkin Institute pledges to support members of the autistic community as they work together to recognize and protect each other’s unique needs. We urge everyone to be cognizant of the fact that while all people diagnosed with autism are targets for this operation, those with higher support needs are facing heightened threats to their wellbeing. The federal government's current hyperfocus on a “cause” of autism – which most scientists believe is a very complex interplay of genetics and environmental factors – threatens to take resources away from “access, affordability, and quality of healthcare services,” which “are crucial factors influencing health outcomes for people with Autism,” according to the Autism Society. In fact, the defunding of autism research related to essential services has already begun. The Department of Education's Institute of Education Sciences, which studied best practices to improve outcomes for autistic students, has been gutted by Trump Administration layoffs.

The Lemkin Institute underscores that assessments of “quality of life” should never be determined by ideological frameworks, particularly those informed by eugenics and other population “fitness” models linked to 20th century mass murder projects. The lived experience of autistic people should be the starting point for all state programs aimed at addressing autism. Autistic people are diverse – just like any other group; they are capable of feeling joy, of expressing and receiving love, and they enrich our society in multiple ways that too often go unrecognized. Autism is not a “disease” but one “disorder” among many in our diverse species. Even if someone cannot, in the Secretary's words, “play baseball” or “write a poem,” they are still a person who deserves to be included and cared for in society.

Excluding people from society based on their medical history opens the door to excluding people for all sorts of other perceived weaknesses – and it ignores the many strengths that such people have, strengths that may even be absent in people like Secretary Kennedy. It is always remarkable to observe the arrogance of leaders who target marginalized groups with smear campaigns while assuming that they themselves are somehow free from characteristics that are “catastrophic for our country” and constitute “individual tragedies.” We remind Americans that fascist movements often begin by attacking more socially acceptable (and marginalized) targets through the language of positive social change (“protecting” people from undocumented immigrants, “curing” disability). It is crucial not to let this framing obfuscate the true nature of the government’s intentions towards autistic people and other targets of state hostility.