Health and Human Services Secretary Robert F. Kennedy Jr. recently claimed that we will learn the cause of autism within a few months. Kennedy told reporters, “we’ve launched a massive testing and research effort that’s going to involve hundreds of scientists from around the world … By September, we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures”
Kennedy later doubled down during a press conference on April 16, again declaring autism to be an “epidemic” and vowed to find the “environmental toxin” behind it. He also called autism a “preventable disease.”
These words pierced right through me and other autistic individuals that I know. The way I have understood autism is as a different way of having your brain structured. Now I’m being told that my brain is the product of an “epidemic.” To Kennedy, because I have a “disease” and need to be cured. My different way of living needs to end.
When you think of “disease,” people generally think of the flu, cancer, diabetes or measles. These are all diseases that have sometimes been fatal. Does autism truly belong in this category? I have yet to learn about anyone that has died as a result of having autism. Autism has not ever spread from one person to the next, nor has it ever killed someone. Therefore, we should reject Kennedy’s characterization of autism as a “disease.”
When autistic people like me are told we have a “disease,” it’s hard to see that as anything but demoralizing and hurtful. Does this mean we have to continue to be isolated, like autistic people have been for decades? Does this mean we’re at risk of spreading our disease? These are questions Kennedy does not answer.
Kennedy’s reasoning for why there’s an “epidemic” is that there has been an increasing number of autism diagnoses over the years. Very recently, the CDC released a report showing that now one in 31 children in the U.S. has autism.
The problem with Kennedy’s reasoning, however, is the increased number of autism diagnoses can be attributed to better screening and awareness of autism. As that CDC report stated, the increase of the number of individuals being diagnosed may be attributed to “availability of services for early detection and evaluation and diagnostic practices.” Rigorous research supports this view.
Kennedy said many worse things in a speech last week — that “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.” Evidently, Kennedy has not met many, if any, autistic people, as there are many of us out in the world who pay taxes, hold jobs and live ambitious lives.
The person Kennedy tasked to investigate the “autism epidemic” is David Geier, who is not a physician and was charged by the Maryland Board of Physicians for improper practice of medicine. Geier has also promoted anti-vaccine views on multiple occasions. This should be enough evidence to show that Kennedy isn’t launching a good-faith investigation into autism, and we should disregard whatever the final report says about what is behind autism.
Still, whatever the results of RFK Jr.’s autism inquiry, the damage is done. When the top health official in America declares autism to be an epidemic and a disease, some people listen and pass that information to others. Because it is now being repeated at the highest level of the health community, ideas like the pathology view of autism are legitimized — when they should be thrown in the dustbin of bad science.
Autistic people will survive this latest attack on our identity, but we are hurt by rhetoric that treats autism as a pathology. When Kennedy is in charge of a platform like the Department of Health and Human Services, his bad views are amplified to a wide audience.
Instead of pushing for a pathology view of autism, the department should be pushing for a view that sees autism as a different way of living that comes with different challenges. Under Secretary Kennedy, however, I fear that won’t be happening anytime soon.
David Rivera is the president and founder of Mentoring Autistic Minds, a California-based nonprofit that aims for a neurodiversity-affirming country through mentoring and education.
