I wasn’t looking for a diagnosis in April of 2004 when I began reading a New York Times article on Asperger’s syndrome — then psychiatry’s label for a less-disabling form of autism. But soon after reading it, I had a whole new way of understanding myself.
Learning to read on my own at age 3? That was hyperlexia, which is commonly associated with autism. Being overwhelmed by loud noises, clothing and food textures, smells, hugs and other people? That is why being autistic is sometimes described as living in an “intense world.” Using repetition and routines to manage these sensations; talking obsessively about my unusual interests; taking everything literally; and missing social cues … yep, all me.
I realized I wasn’t the only one whose life had been molded by this collection of seemingly disparate traits. Many others were on the same journey: The more we learn about autism, the more prevalent it seems to be. Recent statistics show that autism rates have risen from 0.7 percent of 8-year-olds in 2000 to 3 percent in 2022.
Experts disagree on the causes of that increase, but for President Trump and Health Secretary Robert F. Kennedy Jr., it’s a clear sign that autism has become a “crisis” that must be eradicated.
On Monday, Mr. Trump introduced new government efforts to identify the roots of the condition and potential treatments. During a stunning press conference, he claimed that the use of acetaminophen — a.k.a. Tylenol — during pregnancy is linked with a “very increased” risk of autism and is “not good.” (Studies find that the link between autism and Tylenol, if not entirely an artifact of data gathering issues, is weak.) Mr. Trump encouraged pregnant women to “tough it out” and not use the medication, even though untreated fever can harm development.
Mr. Kennedy also announced that the administration would fast-track access to a drug called leucovorin, a form of the B vitamin folate, to treat autism, and he said that we should “believe all women” when they claim that their children have been injured by vaccines.
The whole initiative is the latest troubling sign that the administration misunderstands what autistic people and our families need. Unfortunately, the Trump administration seems to see autistic people as a burden on society that should be eliminated, not as citizens who are valuable.
Mr. Kennedy has said that “autism destroys families” and called it “cataclysmic” during the press conference. But there is much more to autism than this bleak view suggests. Like many brain differences, autism isn’t just an affliction.
Autism can cause profound disability, which is true in 10 to 27 percent of cases. Such cases are rising at a much lower rate than those on the milder end of the spectrum, who, like me, may become aware of what their traits signify only because of greater media attention to the diagnosis. Even the apparent rise in severe cases may be a classification issue: Many intellectually disabled children who once would have been given other labels are now identified as autistic; this may account for two-thirds of the increase in these cases.
Of course, even if severe cases aren’t increasing sharply, the suffering associated with them demands our attention. But it’s this distress, pain and severe disability that we must reduce — not autistic traits or people. If we try to eliminate autism, we’re likely also to lose a great deal of mathematical, scientific, linguistic, artistic, musical and humanitarian genius. And critically, regardless of abilities, all people have intrinsic value.
The best data suggests that autism is mainly genetic. Studies that compare identical twins to fraternal ones (identical twins share nearly 100 percent of their genes; fraternal twins, around 50 percent) show that if an identical twin has autism, the odds that the other twin is also autistic are between 65 and 90 percent. But for fraternal twins, those odds are less than half as high and are even lower if the twins are not the same sex. If chemical exposure in early life is the primary issue, twins should be equally affected.
It may also be the case that we’re seeing more of what scientists call assortative mating — where like attracts like. The internet has made it far easier for those with similar interests to find one another and have children together, and that might include autistic people. Research increasingly supports this theory.
As with other disabilities, many of the worst problems faced by autistic people aren’t caused directly by their symptoms, but by how society treats us. Accommodating differences — rather than rejecting and isolating people who seem “strange” or “difficult” — also makes society better.
As a child, I was frequently bullied because I often couldn’t prevent myself from crying. Such reactivity is typical of autism, and our experience of being unable to fit in may be why so many of us are sensitized to unfairness and injustice. Such bullying isn’t just a minor hassle: It’s linked to later depression, addictions, even suicide.
Ironically, autism used to be seen as a condition marked by a lack of empathy. In fact, many autistic people are over-empathetic: The problem is that this can cause so much distress that we turn away rather than reach out because we are overwhelmed.
This is an agonizing trait to have at this moment. As many autistic people do, I tend to seek escape in systems, which are more predictable to us than people. I sometimes think we can fall in love with them the way you would with another person. Science, of course, is the system to understand all systems — and so to see it under attack, in the name of fixing us, of all things — is brutal.
Moreover, autistic folks tend to love stability and routine, and to struggle mightily with chaos. To see the nation’s scientific agencies following Mr. Kennedy’s lead and promoting pseudoscience is shattering. Many of our greatest scientists, musicians and mathematicians have high levels of autistic traits or actually meet criteria for autism; if we want to benefit from more of their insights or just be better people, we need to target autism-associated disabilities, not autism.
What we need is understanding, accommodation and resources. Instead, the signal we’re getting is that autism shouldn’t exist.
Maia Szalavitz (@maiasz) is a contributing Opinion writer and the author, most recently, of “Undoing Drugs: How Harm Reduction Is Changing the Future of Drugs and Addiction.”
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