Proposed HHS changes particularly threaten autism science.
Key Points:
- Most individuals with autism spectrum disorder (ASD) can achieve developmental milestones like others.
- The recently proposed registry of individuals with ASD is an unethical breach of patient confidentiality.
- More action is urgently needed to drive progress in science generally and autism specifically.
“He doesn’t know anything!” said Joe, a bright 13-year-old diagnosed with an autism spectrum disorder (ASD), as he walked into the psychiatric office. “Who?” the psychiatrist enquired. “RFK, Jr.—he doesn’t understand anything about what it means to be neurodiverse. I’m autistic and proud of it.”
Joe was referring to the press conference given by Robert F. Kennedy, Jr., the United States Secretary of Health and Human Services (HHS), on April 16, 2025. In his statements, Mr. Kennedy said:
“Autism destroys families, and more importantly, it destroys our greatest resource, which is our children…. These are kids who will 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…. We have to recognize we are doing this to our children, and we need to put an end to it.”
Joe is not alone in his indignation about these comments. He and his family identify with the neurodiversity movement, as do a large proportion of autistic individuals and their parents.
“Neurodiversity” is a concept that contends that natural variation exists in human development and brain functioning—in how an individual thinks, processes information, learns, and relates to others. The basic idea is that there is no single “correct” way of being a person. Those who advocate for the acceptance of a neurodiversity viewpoint highlight the positive aspects of ASD.
For example, Temple Grandin (a famous animal scientist), Anthony Hopkins (an esteemed actor), and other highly intelligent individuals are autistic. For Joe, autism is a unique and valued aspect of his identity.
The Diagnosis and Range of ASD
Psychiatrist Leo Kanner first described and diagnosed autism in 1943. Since then, research has soared, with almost 6,000 scientific articles related to autism published annually.
ASD is defined in the Diagnostic and Statistical Manual (DSM-5-TR) as a condition in which the individual exhibits persistent deficits in social communication and interaction, plus restricted, repetitive patterns of behavior, interests, or activities, beginning in the early developmental period. The condition has an overall estimated prevalence of 16.8 per 1,000 children aged 8 years in 2014.
The autism spectrum is generally divided into three levels reflecting the intensity of support required for daily living.
- Level 1 (the largest category, at 45-50%): The individual has an average or above average IQ but struggles socially. Level 1 includes individuals who used to be diagnosed with Asperger’s Disorder. Bright and highly successful individuals, such as Elon Musk, have self-disclosed this diagnosis.
- Level 2 (about 30-35%): The individual requires support, with significant challenges in communication and behavior, but they are able to learn self-care and other life skills.
- Level 3 (about 20-25%): The individual requires very substantial support, with co-occurring intellectual disability, minimal verbal communication, and limited capacity to manage activities of daily living.
The Causes of ASD
HHS Secretary Kennedy claimed, “Autism is a preventable disease…. Clearly, there are industries. This is coming from an environmental toxin. Somebody made a profit by putting that environmental toxin into our air, our water, our medicines, our food. It’s to their benefit to normalize it, to say, this is all normal.” This statement is inaccurate.
ASD is a complex condition resulting from a combination of many factors. The research supporting this claim is very strong. Twin studies and genetic testing consistently demonstrate a powerful genetic component, with estimates of the genetic contribution between 60-90%. In addition, other contributing factors during development have been identified.
The National Institutes of Health (NIH) list other risk factors:
- Prenatal exposure to toxins (pesticides and pollution)
- Viral exposures (especially Rubella)
- Valproate
- Premature birth or low birth weight
- Maternal health problems
- Parents conceiving at older ages.
Although pollution has many adverse health effects, minimal evidence suggests that toxins after birth lead to autism. Large-scale studies conducted over decades have debunked the claim that vaccines cause autism.
The Problematic ASD Registry
HIH Director Jay Bhattacharya reported that NIH would develop national disease registries, including one for autism, to be integrated into a new data platform studying chronic diseases.
However, the plan to amass a broad swath of confidential health data as part of an autism research effort received substantial backlash from families, autism advocacy groups, and autism researchers. They raised concerns about violating the privacy of protected health information and the potential use of the information to support unfounded claims. The groups described the registry as unethical, problematic, and stigmatizing to individuals with ASD. Possibly due to this backlash, HHS reversed course.
What HHS’ Proposed Changes Could Mean
More research on potential causes, early interventions, and treatment of ASD is certainly welcome, if research is performed scientifically. However, a draft of proposed cuts to HHS, leaked on April 23, 2025, would eliminate support for people with disabilities in the U.S., including through cuts in funding of research, social services, health insurance, education, and mental health services for children with special needs.
- Daniel Geschwind, professor and director of the UCLA Center for Autism Research and Treatment, noted that researchers were “poised to make big advances in autism.” Yet, the cuts and unscientific approaches to research will make those advances “stop in their tracks.”
- The ban on research and services related to diversity, equity, inclusion, and accessibility has also directly halted autism research.
- If the Medicaid budget in the U.S. is slashed, as Congress has proposed, about 15 million people with disabilities who rely on Medicaid health insurance will be removed from the rolls.
- Cuts to the Department of Education, which supports more than 7 million disabled students, will also limit essential special educational services to individuals with ASD.
- Children with ASD, along with those with learning disabilities, physical disabilities, intellectual disability, and other mental health conditions, will experience a reduction in services.
Speaking Up for Science
Without a sound scientific understanding of the complex causes of ASD, there is no clear path to prevention. A scientifically questionable and misguided focus on ASD prevention will not advance a true understanding of causes, treatments, and respect for what autistic individuals bring to society. Given the decades of solid scientific research investigating ASD, the claim that the “cause will be found by September” is implausible.
It is important to remember that the United States’ investments in research have made it the world’s largest generator of scientific advances in health and technology. Cutting research budgets while simultaneously claiming to advance the public interest is contradictory and misleading.
HHS reversed its plans for an autism “registry” after a public outcry. A strong public outcry has reversed many other administration declarations. Members of the public can contact HHS and local legislators to advocate against budget cuts to basic services for disabled Americans, as well as for research into causes and cures of autism, cancer, and multiple other serious disorders. Budget policy decisions should be based on scientific evidence and realistic assessments of the needs of U.S. citizens.
This article has been republished with permission. You can view the original source, published on July 2, 2025, at https://www.psychologytoday.com/us/blog/psychiatrys-think-tank/202507/setting-the-record-straight-on-autism.
All authors are child and adolescent psychiatrists. Drs. Dorothy Stubbe, M.D., and Eunice Y. Yuen, M.D., Ph.D., are co-chairs of the GAP Child Committee.
Group for the Advancement of Psychiatry (GAP) is a think tank of top psychiatric minds whose thoughtful analysis and recommendations serve to influence and advance modern psychiatric theory and practice.
