The Centers for Disease Control and Prevention updated its website last week to say that “the claim ‘vaccines do not cause autism’ is not an evidence-based claim because studies have not ruled out the possibility that infant vaccines cause autism. Studies supporting a link have been ignored by health authorities.” Health and Human Services Secretary Robert F. Kennedy Jr. later told The New York Times that he personally instructed the CDC to change the language.
Unfortunately, Kennedy’s words are not rooted in reality, which compromises the CDC’s reputation as a trusted scientific source. But his changes also represent a massive step back in how public officials talk about autism. The Trump administration is working toward treating autism as something to be prevented, rather than building a health-care system that helps people who are autistic. It’s part of a larger backlash, both in the United States and around the world, against the concept of neurodiversity.
In recent years, the paradigm around autism changed significantly. In 2014, Congress reauthorized the law previously known as the Combating Autism Act under the moniker the Autism CARES Act. That came after advocates had pushed for a name change using the hashtag #StopCombatingMe on social media.
The current administration focuses on ways autism can be terrible, as if those are the only accurate barometers of a decent life.
The way politicians spoke about autism began to change significantly as well. When Hillary Clinton ran for president in 2008, she said, “We will tackle everything from autism to Alzheimer’s, cancer to diabetes, and make a real difference.” Though well-intentioned, Clinton essentially lumped in a developmental disability with diseases that kill people. It was also rooted in the idea that most advocates were not people who are autistic themselves but their parents, educators, researchers and caregivers.
By the time Clinton ran for president again in 2016, though, her campaign focused on conducting a nationwide survey for autistic adults, keeping students who are autistic safe at school and creating paths for employment. That same year, the nonprofit Autism Speaks removed the word “cure” from its mission statement. Stephen Shore, a member of the group’s board of directors who is autistic, said at the time that “the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum – rather than something that has to be done.”
Earlier this month, I flew to Asheville, North Carolina, to profile Nicholas Hemachandra and his father, Ray, for my second book about autism and young men. Nicholas has a good life. He works at an ice cream shop. He plays basketball at the YMCA, has a girlfriend and enjoys juggling. He has also told his dad that he wants to have more friends.
Nicholas faces challenges, to be sure: He suffered a stroke as a teenager, and as a result he likely will never regain clarity of speech. But thanks to state services like a Medicaid waiver that helps provide caregiver support, he’s able to enjoy life and receive care multiple days of the week. Accepting and embracing people like Nicholas opens doors previously closed to them, and spares them a miserable existence.
I wish that Kennedy could have accompanied me to meet the Hemachandras. As luck would have it, when I got off the plane, Kennedy stood in front of me in the cramped quarters of Asheville Regional Airport. I tried to ask him about a new study that showed no clear link between Tylenol use during pregnancy and autism, but his team brushed me off. As he boarded, someone whispered, “Quack.” If the secretary heard, he showed no sign of it.
The conversation around vaccines wastes time and effort that we need for building an inclusive world for autistic people.
We can relieve the difficulties that people like Nicholas suffer, while also acknowledging their humanity and creating opportunities for them. Unfortunately, Kennedy’s policy approach erases this progress. Rather, the current administration focuses on ways autism can be terrible, including ideas that autistic people can never work, write poetry, date or play baseball, as if those are the only accurate barometers of a decent life. Autistic lives are still worthy even if they never include any of these things.
This explains Kennedy’s wild goose chase on acetaminophen and even circumcision as other causes of autism. And it’s entirely in keeping with Trump’s view of autism as well: The oft-repeated Trumpism “many such cases,” for instance, originated from a tweet in which he decried a hypothetical child receiving a “massive shot of many vaccines” who then “doesn’t feel good and changes – AUTISM.” If autism is truly as tragic as Kennedy and Trump say, then the government should try to prevent it.
Such an approach only harms autistic people and their families. It makes parents feel like failures if they don’t try whatever cockamamie treatment Kennedy suggests, and moral monsters for immunizing their children. Instead of promoting acceptance, which allows autistic people and their families to band together to rebuild the world around them, it creates blame. The conversation around vaccines wastes time and effort that we need for building an inclusive world for autistic people. Without such understanding, too many autistic Americans will suffer.
Eric Garcia is an author and senior correspondent for The Independent.