Should the Autism Spectrum Be Split Apart?

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, including help eating, getting dressed and using the toilet.

At the time Jodie’s diagnosis was first made, 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. Along the way, it also became an identity, embraced by college graduates and even by some of the world’s most successful people, like Elon Musk and Bill Gates.

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 flashpoint in a long-running debate over how autism should be defined, one that has divided parents and activists, ignited social media battles and grown fiercer with Mr. Kennedy’s laser focus on autism.

Speaking of autistic children in the spring, Mr. Kennedy said, “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.”

His words drew a swift backlash from many autistic adults, who called his characterization of their lives false and dehumanizing. But Jodie’s mother, Alison Singer, said that, though she disagrees with Mr. Kennedy’s views on the causes of autism, his words about the harsh realities of living with the disorder spoke to families like her own.

Now Ms. Singer, who is the head of the Autism Science Foundation, a nonprofit that funds autism research, 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.

At major autism conferences and in scientific journals, 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, according to the most recent data, 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 year over year, even as overall funding for autism research has grown substantially.

And a survey of 800 families, conducted this year by the National Council on Severe Autism, found that 80 percent had been told their children were too disruptive even for classrooms and services tailored to students with autism and other disabilities.

“Autism has become so diluted, we can’t really tell what we’re talking about anymore,” Jill Escher, the founder of the national council who has two adult children with profound autism, said.

Ms. Singer put it more bluntly: “The idea that Elon Musk has the same diagnosis as my daughter,” she said, “is ludicrous.”

Yet many autistic activists strongly object to the idea of splitting the diagnosis, warning that it risks invalidating their own experiences.

The field of psychiatry, they argue, long dismissed people at the milder end of the autism spectrum as merely quirky or difficult, before recognizing that they, too, often required support. Many of the activists who helped change that — pioneers of what is known as the neurodiversity movement — worry that splitting the diagnosis could marginalize people with less visible struggles.

“We’re not really autistic — that’s the undertone of all of this,” said Dr. Mary Doherty, an anesthesiologist in Dublin and the founder of the advocacy group Autistic Doctors International. She said that while she knew vast numbers of autistic people, “I don’t know any who support this.”

A ‘Very Rare’ Disorder

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 or did not speak at all.

Though some of the children could recall facts with astonishing clarity, most had an I.Q. below 70. Many showed self-destructive behaviors, like intentionally banging their heads or hitting themselves, or being aggressive toward others. The disorder, the manual said, was “very rare.”

For Ms. Singer, the first clue that Jodie might be different came at a Mommy and Me class in 1999. She noticed that her daughter did not play with her toys the way the other babies did, instead quietly lining them up and arranging them by color and size. Most noticeable was the fact that Jodie seemed unable to use language to communicate.

Early internet email lists for parents of children with autism were filled with frightening theories about autism’s potential causes. In 1998, Andrew Wakefield published his now-retracted study linking autism to the measles, mumps and rubella vaccine. Online, many parents spoke excitedly about the book “Let Me Hear Your Voice,” written by a mother of a child with autism, which made the unsubstantiated claim that intensive behavioral therapy could lead to a cure.

Ms. Singer quit her job and hired therapists to work with Jodie 40 hours a week. But after two years, although Jodie had learned some basic skills, her autism was unchanged.

“I realized this was going to be lifelong,” Ms. Singer said. The family decided, “We were going to continue to try to help her to be the best Jodie she could be.”

A Unified ‘Spectrum’

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 mold 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 D.S.M. officially loosened the criteria, allowing the diagnosis to be applied to more people. And the manual added a new, related diagnosis, Asperger’s syndrome, named after the Austrian pediatrician who had first identified such children 50 years earlier.

This new diagnosis included children who struggled with social interactions and often displayed repetitive behaviors and had narrow interests, but who could speak and typically had average and sometimes extraordinary intelligence.

At the same time, 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 emphasized that many traits once considered pathological could be seen instead as differences or even strengths central to their identities.

Activists called out what they saw as punitive therapies that tried to eliminate behaviors 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. “Nothing about us without us” became a rallying cry, as autistic people fought to be involved in decisions about their care.

“We wanted to move away from trying to fix or correct people,” Ari Ne’eman, an assistant professor at the Harvard T.H. Chan School of Public Health who researches disability policy, said.

Dr. 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.

The movement’s work to destigmatize autism helped give some adults a framework to explain challenges they had faced since childhood. “Aspie” culture thrived in corners of the internet and in fields like science and technology and was talked about as a superpower of sorts. Microsoft started a neurodiversity hiring program.

But, in 2012, Catherine Lord, a clinical psychologist at the University of California, Los Angeles, conducted a study that found Asperger’s “was not a reliable diagnosis.” Whether a person received a diagnosis was determined less by the criteria they met and more by who did the diagnosing.

A controversy was also growing over the fact that Hans Asperger had worked with the Nazi regime.

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.

In an opinion essay Dr. Baron-Cohen wrote while the American Psychiatric Association was revising the D.S.M., he argued, “I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups the psychiatric association should not blur too hastily.”

Soaring Diagnoses

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.

President Trump and Mr. 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,” Mr. Trump said at a news conference last week, arguing that Tylenol and vaccines were driving the rise.

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 epidemiologist at Oregon Health & Science University who was on the committee that added the Asperger’s diagnosis. He noted that in the earliest studies of autism rates, 75 percent of people with the diagnosis had intellectual disabilities. Now, only about a third do.

With Mr. Trump and Mr. 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 D.S.M. 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 they will develop autism. “We’re partly at fault, because we didn’t foresee it.”

A Profound Need

Parents of children with profound autism say that as diagnoses have surged, it has become more difficult to find services for their children.

Ms. Singer said Jodie was asked to leave three schools before her district offered to pay for her to attend a residential school in upstate New York geared toward profoundly autistic children.

Eileen Lamb, who has two autistic children, said she had seen intimately how much harder it was to obtain accommodations for her son Charlie, 12, who cannot speak and has an intellectual disability, than for his brother Jude, 10, who has some social and communication problems but is considered gifted.

Last summer, she signed up both Charlie and Jude for a swimming class for children with disabilities in Austin, Texas, where they live. Jude thrived. But the swim school said in order for Charlie to continue, Ms. Lamb and her husband would need to pay for an additional instructor for him. They could not afford it and pulled him out of the class.

She said she also had to remove Charlie from his special education classroom after incidents in which he hit people, swallowed inedible objects and ran away from school.

“I see how broad the spectrum is every day,” said Ms. Lamb, who is also diagnosed with autism.

Ms. Lamb, who writes on her website, The Autism Cafe, about her experiences as a parent of a child with profound autism, said she was frequently criticized online by people who said she was stigmatizing autism.

Jackie Kancir, the executive director of the national council, who is a full-time caregiver to her profoundly autistic 22-year-old daughter, said in Tennessee, where she lives, there are programs for adults with mild to moderate disabilities, but that “there is absolutely nothing available for her population in my state.”

“That’s where the neurodiversity movement is failing,” Ms. Kancir said. “They have usurped this population to the point of exclusion.”

Different Needs

One persistent question is whether profound autism can be identified as a distinct biological category, but people with significant impairments are underrepresented in research that could help answer this question.

Dr. Matthew Siegel, a child psychiatrist at Boston Children’s Hospital, said his research showed that from 1991 to 2013, the proportion of treatment studies that included participants with severe autism declined to 35 percent from 95 percent.

Part of the gap, he said, was likely driven by convenience. People with profound autism could not go online and fill out surveys for studies or tolerate sitting still for a brain scan inside a loudly humming machine. And obtaining informed consent is more complicated for people with intellectual disabilities, whose parents typically consent on their behalf.

But Ms. Singer argues that the growing influence of the neurodiversity movement has also played a role in shifting research priorities away from questions about causes and cures and toward issues like mental health, best practices in employment and how to support autistic women during pregnancy.

The research that parents of children with profound autism wanted to see was worlds away: “What is causing my child to bang her head against the floor? Why is she having seizures? Why doesn’t she eat? Why doesn’t she sleep? How can I teach her to talk?” Ms. Singer said.

At international autism conferences groups have presented proposals for a profound autism category, defined as having either minimal or no ability to speak or an I.Q. of less than 50, or both, and requiring 24 hour access to a caregiver.

Dr. Ne’eman, the Harvard disability researcher, said while there was a clear need for better services and more research for people with profound impairments, he worried that the new label could further stigmatize them and make them vulnerable in light of psychiatry’s history of institutionalizing people with severe disabilities.

Besides, Dr. Ne’eman said, where would you draw the line? The attempt to split the autism spectrum, he said, was akin to trying to “cleave a meatloaf at the joints.”

A Regular Day

Like most parents of children with profound autism, Ms. Singer worries what will happen to Jodie after she and her husband die.

Her daughter is one of 180 adults who live at a residential center on 1,500 acres of farmland in upstate New York. Openings are extremely rare because most residents remain for their entire lives.

When I joined Ms. Singer to visit Jodie this summer, she was doing her daily job: visiting the farm animals and bringing them hay to eat. Typically, she’d spend time petting the goats, giving them a kiss on their snouts.

When we arrived, the departure from routine — her mother coming on Friday instead of Saturday to bring her home for the weekend — rattled her. Ms. Singer assured her that she would be having a regular day, then would go home. Pacing back and forth, Jodie repeated the phrase “regular day,” compulsively pulling at the hair on the back of her neck the way she had when she was a little girl.

An hour later, back at her shared house on the sprawling campus, the calamity had passed. As Ms. Singer packed her bag for the weekend, Jodie sat hunched at a desk by a sunny window. She smiled as she drew a picture of her family and then, slowly, spelled out “Jodie.”