Jodie Singer was diagnosed with autism at age 3. Photo / Bryan Anselm, The New York Times
Families of people with severe autism say the repeated expansion of the diagnosis has pushed them to the sidelines.
As a child, Jodie Singer barely spoke. She could repeat words that people said to her or recite the book Madeline from beginning to end, but she could not answer yes or no when her mother asked if she wanted juice.
Sometimes she hurt herself, compulsively tearing at the skin and hair on the nape of her neck. She threw tantrums, thrashing and refusing to be comforted.
When she was almost 3, Jodie was given a diagnosis of autism. Now 28, she still speaks only in short, repetitive phrases and requires round-the-clock care.
At the time of Jodie’s diagnosis, the definition of autism was expanding, as it would continue to do over the next 25 years. Once primarily limited to severely disabled people, autism began to be viewed as a spectrum that included far less impaired children and adults.
That broadening of the diagnosis, autism experts believe, along with the increasing awareness of the disorder, is largely responsible for the steep rise in autism cases that Health Secretary Robert F Kennedy Jr has called “an epidemic” and has attributed to theories of causality that mainstream scientists reject, like vaccines and, more recently, Tylenol.
And the diagnostic expansion has now become a flash point in a debate over how autism should be defined.
Jodie’s mother, Alison Singer, the head of the Autism Science Foundation, is one of a group of parents and clinicians who are calling for the autism spectrum diagnosis to effectively be split in two, saying it has become so broad that it is obscuring the experiences of the seriously disabled people it was first meant to describe, like her daughter.
The group has proposed the creation of a separate category, called profound autism, for people with the most severe disabilities.
An estimated one in 31 8-year-olds in the United States has an autism diagnosis, up from one in 150 8-year-olds in 2000. While the most severe autism cases account for a small part of that increase, most of the surge reflects a rise in the number of higher-functioning people getting diagnosed.
Parents of children with severe autism say the wider diagnosis has come at a steep cost: research that includes people with the most significant impairments has declined, even as overall funding for autism research has grown substantially.
Yet many autistic activists strongly object to the idea of splitting the diagnosis, warning that it risks invalidating their own experiences.
“We’re not really autistic – that’s the undertone of all of this,” said Dr Mary Doherty, an anesthesiologist and the founder of Autistic Doctors International.
Autism first became a formal diagnosis in the 1980 version of the Diagnostic and Statistical Manual of Mental Disorders, often referred to as the “bible of psychiatry”. Back then, the diagnosis was used to identify children who, by the time they were toddlers, seemed unable to form social attachments and who had severe language deficits.
Although some of the children could recall facts with astonishing clarity, most had an IQ below 70. Many showed self-destructive behaviours, like intentionally banging their heads or hitting themselves, or being aggressive toward others. The disorder, the manual said, was “very rare”.
In the years after autism was first added to the diagnostic manual, clinicians began noticing that some of their young patients seemed to fit a similar mould but did not meet the stringent requirements for a formal diagnosis. The idea of autism being on a “spectrum” began to gain traction.
In 1994, the DSM officially loosened the criteria, allowing the diagnosis to be applied to more people. And the manual added a new, related diagnosis, Asperger’s syndrome. This new diagnosis included children who struggled with social interactions and often displayed repetitive behaviours and had narrow interests, but who could speak and typically had average and sometimes extraordinary intelligence.
A growing movement of people on the spectrum fought to reframe autism, rejecting the idea that it was a disease in need of a cure. The neurodiversity movement emphasised that many traits once considered pathological could be seen instead as strengths.
Activists called out what they saw as punitive therapies that tried to eliminate behaviours like fidgeting or avoiding eye contact, which they argued had little to do with their well-being and more to do with the discomfort of people around them.
“We wanted to move away from trying to fix or correct people,” said Ari Ne’eman, an assistant professor at the Harvard TH Chan School of Public Health who researches disability policy.
Ne’eman, who was diagnosed with Asperger’s as a child, founded an influential group called the Autistic Self Advocacy Network in 2006. It focused on meaningful interventions in autistic people’s lives, “rather than trying to make them look and act normal”, he said.
Then, in 2013, psychiatrists decided to do away with the separate categories altogether and fold them into the unified diagnosis of “autism spectrum disorder” that is in use today. Different degrees of impairment were identified by different levels – Level 1 for those with the lowest needs for support, and Level 3 for those with the highest.
That decision was contentious from the beginning. “I thought this was a mistake,” said Simon Baron-Cohen, a clinical psychologist at the University of Cambridge.
The authors of the first diagnostic manual to include autism 45 years ago estimated that the disorder affected only two to four children in 10,000. Over the years, the estimates rose to one in 500, then to one in 150, and now to one in 31.
US President Donald Trump and Kennedy frequently cite those numbers to suggest that autism is spreading like wildfire.
“The meteoric rise in autism is among the most alarming public health developments in history,” Trump said last week.
But most scientists believe that the biggest reason for the increased prevalence is the shift in how autism has been defined.
“Everything changed when we included Asperger’s,” said Dr Eric Fombonne, a psychiatrist and researcher at Oregon Health & Science University. He noted that in the earliest studies of autism rates, 75% of people with the diagnosis had intellectual disabilities. Now, only about a third do.
With Trump and Kennedy’s focus on the issue, some experts argue, the widening of the diagnosis also has urgent consequences for public health. Dr Allen Frances, a psychiatrist who led the 1994 DSM revision, said that at the time, no one dreamed that the number of people with autism diagnoses would increase as much as it had.
“The dire consequences now include that people won’t get vaccinated because of this diagnosis,” he said, referring to parents who will not vaccinate their children out of fear that they will develop autism. “We’re partly at fault, because we didn’t foresee it.”
This article originally appeared in The New York Times.
Written by: Azeen Ghorayshi
Photographs by: Bryan Anselm and Lucy Lu
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