President Trump and Robert F. Kennedy Jr. have vowed to tackle what they describe as a scourge threatening American children. The rise in autism has been precipitous: One in 36 children is affected today, up from four in 10,000 in the 1980s, the president warned in a recent executive order. Under Mr. Kennedy’s direction, the Centers for Disease Control and Prevention plans to investigate whether vaccines are the cause — despite overwhelming evidence that they are not.
But what if there’s no mystery to be solved? What if autism is not becoming more common at all? What if the rise in diagnoses is a good thing?
As a scientist with autism, I believe the rise in diagnoses is the result of greater awareness, better identification (especially among women and girls) and a broader definition that now includes a range of neurodevelopmental conditions under the umbrella of “autism spectrum disorder.”
As a child, I often stared into space, missed social cues and delivered long monologues about my specific interests. But it was not until I was 53 that I suspected I had autism spectrum disorder.
The idea arose during a professional review for which my employer had brought in a psychologist. After interviewing me and my co-workers, the psychologist suggested that I might have autism, which subsequent evaluations confirmed.
It’s hard to grasp how a seventyfold increase in autism cases could mostly reflect changes in diagnosis or heightened awareness, but my own experience helps make sense of it. When I was growing up in the late 1960s, autism was mostly diagnosed among children who had huge difficulties in daily functioning and needed extensive support. I wasn’t flagged for evaluation or diagnosis, but that might be different today.
Studies show that the increase in autism spectrum diagnoses among people like myself who do not have intellectual disability, defined as an I.Q. under 70, has steeply increased since 2000. If I had been diagnosed as a child, it probably would have been with Asperger’s syndrome, a label that was often given to children who struggled socially but didn’t have the language delays present in many cases of autism. But in 2013, the American Psychiatric Association folded Asperger’s syndrome into the broader category of autism spectrum disorder.
We also have strong evidence that children who would have been diagnosed with an intellectual or learning disability or emotional disturbance a couple of decades ago are now being diagnosed with autism. Clinicians are also identifying children at younger ages, as early as 18 months. And they are getting better at recognizing the ways that autism can look different in girls, who have always had lower rates of the diagnosis.
If you still think greater awareness and changing diagnostic standards can’t account for the rise in cases, consider this: When researchers screened 50,000 children for autism in South Korea between 2005 and 2009, a time when autism diagnoses were rare in the country, they found 2.6 percent of the population met the criteria for a diagnosis. That’s almost exactly the rate of autism diagnosis we find in the United States today — another piece of evidence that while the official statistics can vary widely, the underlying incidence may be relatively stable across different decades and regions.
As autism has become less of a stigma, it has also become easier for parents to accept. Since I publicly disclosed my diagnosis a year ago, I’ve heard from many people who wonder if they too should get evaluated. These questions often come from parents whose child was diagnosed and who recognize similar traits in themselves.
There’s disagreement over whether people like myself who are professionally successful and don’t have learning difficulties warrant a diagnosis. But even people with milder symptoms of autism can struggle without the acceptance and support for organizational challenges, sensory issues and social communication that a diagnosis can help provide. A diagnosis can also give children access to special education, specialized forms of therapy, accommodations in school and coverage of these treatments by health insurance.
The notion that autism needs to be treated or cured is deeply contested. The Autism Self-Advocacy Network, a nonprofit group run by people on the autism spectrum, released a statement in response to Mr. Trump’s executive order, arguing that autism is not a disease but rather a natural part of human diversity, “something we are born with, and that shouldn’t be changed.” Far from being solely a deficit, I believe, my neurodiversity has made me a better scientist because my autistic thinking leads me to search for patterns, a crucial skill in science.
Other people, including some but by no means all family members of individuals with very high support needs (sometimes called profound autism), may be more likely to consider autism as a medical condition worthy of pharmaceutical intervention and research into treatment and prevention. Although I subscribe to the neurodiversity view for myself, I oversee a scientific journal that publishes research from both perspectives, and I believe proponents of both ways of viewing it have a lot to learn from one another.
One thing that unites both of these camps, however, is a disdain for the persistence of the debunked claim that autism is a result of vaccination.
Could there be other factors behind the surge in autism diagnoses beyond increased awareness? Yes. Conservative estimates from studies of twins and siblings indicate that genetic factors may account for about 80 percent of autism risk. That leaves room for environmental factors. For instance, there are studies suggesting a link between autism and exposure of expecting mothers to nitric oxide found in air pollution.
But any environmental contributors to autism will need to be subjected to rigorous study of all of the evidence. Too often, when vaccine skeptics blame vaccines for autism, they point to studies that have weak methodology, as Mr. Kennedy did during his confirmation hearing for health secretary. These studies ignore the existence of numerous careful randomized control trials that show the opposite.
Some argue, what’s the harm of doing more research on whether vaccines cause autism? For people with severe challenges, whose families urgently want treatments to improve their child’s situation, money spent on a dead-end road takes resources away from more productive paths. It can also increase vaccine hesitancy and contribute to the resurgence of deadly diseases, like the measles outbreak spreading in Texas and neighboring states.
Further, public acceptance of the wrong cause can be detrimental for patients and families. The idea that autism was caused by cold, distant mothers, a leading theory in the 1950s through 1970s, produced considerable trauma before it was debunked.
Knowing I’m on the spectrum has improved my life for the better. I’m able to give my co-workers and loved ones context for how to understand and interact with me. For example, I struggle to modulate my facial expressions and vocal tone. Expensive media coaching failed to help — it just made me preoccupied with my mannerisms instead of my message. By disclosing my diagnosis, I can free my mind to focus on the meaning of my words.
But more than that, I’ve been inspired by the strength of the parents and children who have struggled more than I have, often because they didn’t get the attention and support they deserved. Getting more people diagnosed has helped with this problem.
The last thing we need is to re-litigate a vaccine “debate” that just confuses people and does nothing to accommodate a different way of thinking.