Can autistic people hold down jobs, pay taxes or find love?
Many do — but the question we should be asking, according to waves of advocates, allies and autistic people voicing their concerns online, is why are we defining a person’s worth at all?
Reaction from the autism community has been swift and damning after U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy Jr.’s press conference last week. In discussing the CDC’s new report that autism numbers increased in 2022, Kennedy called autism an “epidemic” and claimed it “destroys families.”
“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,” he told reporters.
Kennedy’s comments come as the autism community is already grappling with his assertion that the U.S. will pinpoint the cause of autism by September, previous repeated pushes of a discredited theory that blames vaccinations, and more recently, news that the NIH will create a disease registry to track autistic Americans.
Autism does not destroy lives, but RKF Jr’s conspiracy theories and insults do.
Now, he wants to create a registry of Americans with autism—pulling from a 1939 Nazi playbook. https://t.co/DncL7o6W3H
All of this is based on the belief that autism is an avoidable disease, which advocates and medical experts have said is stigmatizing, harmful and raises alarm bells.
And many of those who are autistic, raising autistic children, or both, say the current rhetoric in the U.S. is frightening for autistic people everywhere.
“We for so long have been asking to be adequately supported and accepted, and to instead be told that our autism is a tragedy to our families and society as a whole, couldn’t be further from the truth,” said Katherine L’Etang of Springwater, Ont., who is autistic and has ADHD.
“This isn’t the rhetoric of an administration that is looking to support autistic people,” said L’Etang, who was diagnosed when she was 31.
“At best they are misinformed and think they are helping, at worst, they’re looking to eliminate autism, which in turn, given autism’s genetic component, is akin to eliminating autistic people from existing.”
‘Autism doesn’t destroy families’
Autism is a developmental condition that presents a variety of symptoms that can include delays in language, learning and differences in social or emotional skills.
Their support needs can also vary widely. Some autistic people are non-verbal, for instance, or otherwise require extensive, ongoing care. Others generally function independently, but may require some support, such as noise-cancelling headphones in the classroom, or social coaching.
About one in 50 Canadian children aged one to 17 have been diagnosed with autism spectrum disorder (ASD), notes the Public Health Agency of Canada, with males being diagnosed approximately four times more frequently than females.
Experts have largely attributed a rise in cases to improved screening and better understanding of the condition, reasoning that Kennedy has rejected.
While there is no one cause, decades of research have shown that genetics plays a large role. The U.S. National Institutes of Health also lists some possible risk factors, such as prenatal exposure to pesticides or air pollution, extreme prematurity or low birth weight, certain maternal health problems or parents conceiving at an older age.
L’Etang’s children, ages five and seven, are also autistic and have ADHD, with varying support needs. She documents their experiences, and advocates for herself and her family, to her nearly 120,000 followers on Instagram.
And she’s created several posts in response to Kennedy, including one where she writes, “Autism doesn’t destroy families…. Lack of support and services does.”
His comments aren’t just harmful, L’Etang says, they also take away from so much of the progress in the neurodiversity movement, which acknowledges autism as a brain difference that has existed for centuries.
Division by ability
Kennedy’s remarks also divide the community by ability, L’Etang says. Although many autistic people do pay taxes and have jobs, his comments deem those who cannot perform those tasks as “worthless,” she says.
“Their lives are worthy regardless of how much support they need,” she said, adding that children deserve to live a dignified life regardless of how “productive” they are or whether they can live alone.
That’s a sentiment echoed by Kingston, Ont., author Julie M. Green, who wrote Tuesday in her Substack, The Autistic Mom, that a person’s contribution to society extends far beyond their earning power. That type of rhetoric “steers us closer toward supremacy and eugenics,” she wrote.
“As an autistic adult and a parent to a young autistic person, the current narrative terrifies me,” wrote Green.
“Autistic lives matter — all of them. Not simply those of people who are able to hold down a job and pay taxes (which, for the record, many autistic folks do — and which, also for the record, many neurotypicals don’t).”
Edmonton Public Schools is moving into the planning phase for a school specifically for students with autism. While some parents said the school would segregate students with disabilities, a researcher at the University of Alberta thinks that is not necessarily a bad thing.
The harm of misinformation
One of L’Etang’s biggest concerns about Kennedy’s comments is that it will make vulnerable, exhausted parents more likely to fall prey to autism misinformation, she said, adding that social media is rife with it.
For instance, medical experts have linked the resurgence in measles cases with the rise of vaccine hesitancy — including the false idea that the measles, mumps and rubella vaccine causes autism — even though this claim has been debunked by numerous studies.
Meanwhile, a petition has been circulating urging Amazon to pull a new book that advises bleach enemas to “cure” autistic children. The book, written by a homeopath, promotes the “CD protocol,” which both the FDA and Health Canada have warned can cause life-threatening side effects.
And according to Google Trends, U.S. searches for “can autism be cured?” have risen sharply since about April 10 — right around the time Kennedy vowed to pinpoint the “cause” of autism by September.
“Normal” at whatever the cost is not the message we need to be sending right now, said L’Etang.
“If we’re intent on curing and cause, can we focus on cancer? I am horrified.”
