Last month, President Donald Trump and Secretary of Health and Human Services Robert F. Kennedy Jr. made a joint statement on the “Autism Epidemic.” In it, they peddled various pseudoscientific theories about Autism Spectrum Disorder, with little evidence for any claims.
There was immediate pushback from health organizations across the globe. Most of them targeted claims made by the HHS about Tylenol usage during pregnancy causing autism and Leucovorin, or folinic acid, as a treatment option for speech deficits.
There has been no proven link between acetaminophen usage during pregnancy and autism. Additionally, researchers have pointed out there is little evidence for claims made about Leucovorin.
Combating disinformation is important. However, by focusing on that alone, some organizations failed to properly address how the language used is damaging to perceptions of the autistic community. The underlying stigma representing autism as a disease was not disputed.
The word choice is something to be zeroed in on. President Trump referred to the increase in autism diagnoses as a “horrible crisis,” an “epidemic” and “the most alarming development in history.”
The increasing rate of autism diagnoses can be attributed to awareness about autism and changes in diagnostic criteria. Simply put, there are not more people who are autistic, but more people who have autism who are being diagnosed.
Instead of highlighting this fact, there was an implication that the current rates of diagnosis are because of something unnatural.
The recommendations never touched on how best to support autistic people. Kennedy never talked about quality of life. Nowhere in this statement was there anything said to support living autistic people.
This is because bettering people’s lives is not the goal. The goal is to permanently “correct” behavior that exists outside of what is “acceptable.” The implication is that autism is a disease that needs to be fixed.
If the administration cared about autistic people, it would have focused on how to help autistic people with the issues they think are important. Autistic people may struggle to access resources and face discrimination at higher rates than their neurotypical peers. Because of stigmatized perceptions of their behavior, they deal with social discrimination in education and beyond.
To address these issues, we have to accept that parts of the system are at fault. There is no miracle drug for medical discrimination and no cure for lack of accommodations.
Most importantly, when addressing their health and challenges, we need to listen to what autistic people say they need. Even if systemic issues are addressed, autistic people will still have medical and neurological differences.
Disabilities also do not make people any less valuable. A human being’s worth is not determined by their ability to “pay taxes” or “play baseball,” as Kennedy insinuated.
All humans are deserving of basic respect and dignity. The mission of health experts should be to reaffirm this in every public statement made.
Instead of cycling through fad cures and treatments, we should address why we think that people who do not fit into specific categories or follow specific social norms are inherently “lesser.” We should address why we think specific contributions to society make a person more valuable than another.
Rushing out medications that have not proven effective helps no one. The best thing that can be done for those of us who have differences is to listen. Then, work should be put into restructuring society in a way that allows every individual to thrive.
