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AUTISM HAS ALWAYS EXISTED. WE HAVEN’T ALWAYS CALLED IT AUTISM.  
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Roy Richard Grinker
September 24, 2025
The New York Times
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_ Science has not failed. We have developed reliable early detection
methods, expanded special education and improved behavioral and
medical therapies. To think otherwise reveals a deep and willful
ignorance of the history of autism and complexity. _

Jonas Bendiksen/Magnum Photos // New York Times,

 

When I look back at home videos of my daughter Isabel, I see the signs
of autism clearly. But at the time, in 1992, I couldn’t. Autism was
still considered rare. In one video, when Isabel was 15 months old,
she sits quietly, putting coins in a piggy bank. She doesn’t respond
to her name or look at us. My wife and I marvel at her focus and
precision and predict she will be a scientist.

In a widely anticipated news conference on Monday, President Trump
declared that there was “nothing more important” in his presidency
than reducing the prevalence of autism. He claimed that his
administration would virtually eliminate the condition, which he
called a “horrible crisis” and which a top federal health official
suggested might be “entirely preventable.”

The administration’s project is built on the premise that an autism
diagnosis is a terrible tragedy and that scientists and doctors have
failed to prevent what Health Secretary Robert F. Kennedy Jr. has
called an “epidemic.”

But science has not failed. One reason we have so many questions about
autism today is that we’ve learned so much about it and how to
address it. Thousands of highly trained researchers and clinicians
have generated an extraordinary amount of information about autism’s
genetics and neurobiology, developed reliable early detection methods,
expanded special education and improved behavioral and medical
therapies. To think otherwise reveals a deep and willful ignorance of
the history of autism and its present-day complexity.

ISABEL WAS 2½ when she was diagnosed with the unwieldy and now
obsolete “Pervasive Developmental Disorder, Not Otherwise
Specified,” or PDD-NOS, an old term for someone with autism who had
relatively low support needs, or who did not meet every criterion in
the American Psychiatric Association’s Diagnostic and Statistical
Manual of Mental Disorders (DSM-III-R).

Many years later, when I asked our doctor if he had considered
diagnosing Isabel with autism, he confessed that he was scared the
word would devastate us. Autism was a frightening diagnosis in the
’90s, suggesting one’s child had a bleak future. He also
understood how parents can blame themselves for their child’s
problems. My wife and I searched our memories for what we might have
done wrong — a chemical we used while renovating our new house, even
that roller coaster ride before we knew she was pregnant.

It’s easy to forget how recently autism became a common diagnosis
and a household word. It’s easy to forget how little researchers and
clinicians knew about developmental disorders, how we would
marginalize people with the symptoms we now call autism, stigmatize
them and their families and deny them an education. Without knowledge
of that past, we risk making policy decisions that will stall
scientific and social progress.

What we have learned from dozens of rigorous studies is that, in
contrast to claims Mr. Kennedy has made
[[link removed]], vaccines do not cause
autism. We know that more than 100 genes are associated with autism,
which interact not only with one another but also with individuals’
environment and experience throughout their lifetime. The
neurogeneticist Stanley Nelson once said, “If you had 100 kids with
autism, you could have 100 different genetic causes.”

Researchers increasingly believe the search for a cause of a singular
“autism” is misguided. There are autisms, rather than just autism.
The diversity in symptoms, the severity of symptoms and the range of
biological contributors are simply too large to be reduced to one
uniform disorder. The neurobiology is too complex for easy
explanations.

The more we learn, the more we realize that scientific answers to the
question “What causes autism?” or even “What is autism?” will
take a long time to unravel, no matter how quickly a government
official wants them.

THESE DAYS, WHEN STUDENTS IN MY classes on the anthropology of mental
health ask me about the history of autism, they often put it this way:
“When did it become a thing?” I know they are asking me when
autism became widely recognized, but I like to interpret the question
as, “How did we start believing that autism is something real?”

Doctors developed the concept of autism to make sense of a pattern of
traits that frequently co-occur but were not previously grouped
together under a single term. Autism is a collection of signs and
symptoms that has no single identifiable pathological process. Doctors
did not adopt the term because they found something new, like a
bacterium or a virus, that we can test for in a laboratory.

My students are often surprised to learn just how unstable a concept
autism is. Derived from the Greek word autos, meaning “self,” the
term autistic was often used in the early 20th century to describe
adults with schizophrenia who seemed absorbed by their own internal
worlds and private thoughts. By the 1940s, clinicians began to think
that when a child had the symptoms of autism, it was merely evidence
of childhood-onset schizophrenia, a condition we now know to be
extremely rare.

It wasn’t until the 1960s and early 1970s, when child psychiatry was
just beginning to become a bona fide specialization, that clinicians
started to more regularly differentiate autism from schizophrenia.
Doctors disagreed about whether a diagnosis of autism should be
reserved for children with average or above average intelligence, or
if it should also encompass those with an intellectual disability, as
well as additional medical issues such as seizure disorders.

The families of people with autism also suffered from a particular
stigma around this time. The influential writer Bruno Bettelheim
convinced many that autism was a devastating sickness caused by a
single environmental factor: highly educated, cold and distant
“refrigerator mothers,” who he believed must have neglected their
children.

Without legitimate evidence, Mr. Bettelheim blamed a generation of
loving mothers and urged families to send their autistic children to
grim residential institutions to remove them from their mothers’
“black milk.” Although the authority of psychoanalysis declined
during the 1970s, Mr. Bettelheim’s influence still surfaced. In
1994, a leading autism expert in the United States told my wife that
if we wanted our daughter to improve, she should quit her job and
become a stay-at-home mom. He didn’t look at me, and never suggested
I should quit my own job.

The search for easy explanations also persisted. In 1998, a British
doctor, Andrew Wakefield, published an article in The Lancet
describing 12 children who appeared to have normal development but
quickly lost skills, including language skills, following
administration of the measles, mumps and rubella vaccine. It was later
revealed that Mr. Wakefield had misrepresented the findings: Many of
the children’s symptoms predated the vaccinations, and others did
not have autism at all.

The article was retracted and Mr. Wakefield lost his medical license,
but the damage was done. The myth that vaccines cause autism has
persisted, despite studies covering millions of children showing that
there is no link. And now the president of the United States is
echoing Mr. Wakefield’s discredited claims about children “lost”
to autism because of vaccines.

In the last three decades, I’ve seen countless other attempts to
discover specific causes of autism — including scientifically
plausible topics, like de novo mutations in the sperm of older fathers
or high levels of prenatal testosterone, and the absurd, such as
television and pasteurized milk.

PRESIDENT TRUMP CLAIMED ON MONDAY that “since 2000, autism rates
have surged by much more than 400 percent.” But the definition of
autism has changed so much that comparing diagnostic rates from
different eras is misleading.

When “infantile autism” was first introduced into the American
Psychiatric Association’s diagnostic manual in 1980, it was defined
so narrowly that few children qualified. But by the time Isabel was
diagnosed, the concept had been broadened to “autistic disorder,”
with much greater flexibility in symptoms and age of onset. Core
traits like “pervasive lack of responsiveness to other people”
were broadened to include looser, more subjective descriptions, such
as preferring solitary play.

The manual’s next version, the 1994 DSM-IV, continued that
expansion, adding new subtypes, including the short-lived Asperger’s
disorder, which described autistic children without significant
language delays and was often seen as less stigmatizing. It was a
diagnosis clinicians often made for highly verbal children, sometimes
to assure parents that their children’s challenges were not
profound, much as Isabel’s first doctor chose the diagnosis of
PDD-NOS in lieu of autism.

But even as researchers added subtypes, many worried that they could
not reliably distinguish between different types of autism. By the
time the fifth and current edition of the diagnostic manual was
published in 2013, Asperger’s had been removed and autism was
reconceptualized as a continuous spectrum. The decision was fiercely
contested: Some people with Asperger’s feared a loss of access to
services or even to the identity and community that had been built
around the label.

Isabel now falls under the label autism spectrum disorder, a diagnosis
so broad that it includes people who are nonspeaking and require
intensive support, as well as people who work at the highest levels of
academia, government and technology whose mild autistic features help
them succeed professionally. Isabel certainly doesn’t care about
diagnostic manuals, which say little about what shapes the experiences
and identities of people with autism. To her, autism is what gives her
perfect pitch, her ability to solve complex jigsaw puzzles even when
they are picture-side down, and her quirky, sometimes
belly-laugh-inducing sense of humor.

Some autistic self-advocates argue that for many people, autism should
not be considered a disorder or a disability at all, but rather a
different way of being human. Still other advocates draw attention to
the fact that autism is often accompanied by severe challenges like
seizures, intellectual disability and self-injurious behaviors.
Concerned that such serious issues are getting lost in the public
discourse that is celebrating the abilities of autistic people with
low support needs, they are encouraging clinicians to name a new
subtype profound autism.

THE CLASSIFICATION OF ILLNESSES IS OFTEN BASED less on biological
facts than scientific and social consensus at particular historical
moments. It’s a dynamic process of lumping and splitting, of
changing definitions and measures — whether one is describing
autism, hypertension, Type 2 diabetes, obesity, or other conditions
whose cutoff points keep shifting. It’s even conceivable that, years
from now, scientists will eliminate the word “autism” altogether
and replace it with language that describes behaviors, or biological
or genetic pathways, shared by many different conditions, rather than
a distinct syndrome.

Diagnostic categories rarely reflect clear boundaries between health
and illness. No one knows for certain where on a continuum the
adaptive anxiety that compels humans to look both ways before crossing
the street becomes an anxiety disorder, where sadness becomes clinical
depression, or social awkwardness becomes autism. Indeed, family and
twin studies show that autism symptoms can be found throughout the
general population, and especially among relatives of people with
autism. Identifying the point at which something becomes a disorder is
a clinical judgment about whether people’s symptoms impair their
daily functioning and warrant treatment and services.

Sociocultural factors also play an important role in how we define and
treat the cluster of symptoms we refer to as autism. Some Navajo
Indians have viewed it as a state of becoming; in some areas of
sub-Saharan Africa it is linked to spirit possession; some
ultra-Orthodox Jews in Israel view autism positively as an ability to
connect with God; until the turn of this century, the French
psychiatric establishment labeled autism a psychotic disorder.

In contrast to Mr. Trump’s comment Monday that “there are certain
groups of people that don’t take vaccines and don’t take any pills
that have no autism,” people have had the symptoms long before the
first vaccine was invented in the late 1700s, and certainly long
before the word was coined in the 20th century. In past centuries,
many people with crude labels like “insane” or “feebleminded”
were confined to asylums because it was considered culturally
appropriate to do so.

The president also falsely suggested that autism was virtually absent
among the Amish and in Cuba. The Amish do have autism, though they may
be diagnosed less often because they can be reluctant to seek
specialized medical care, and there are multiple schools in Cuba
specifically for children with autism.

In addition, in my own fieldwork in remote regions such as the Ituri
Forest in the Democratic Republic of Congo and the Kalahari Desert in
Namibia — where some communities have little or no access to
vaccines or modern medicine — I found many children and adults with
autism and intellectual disabilities. In the Kalahari, one little boy
who would almost certainly be diagnosed with autism in an American
doctor’s office, is highly valued for his abilities. Despite being
nonspeaking, and despite recently losing his hearing as a result of
measles, the boy, his father told me, “is great herding goats. He
always knows where they are in the day or night.”

In the United States, both race and income have long shaped who is
recognized as autistic. Black children have historically been much
more likely to receive a diagnosis of “conduct disorder” or
“emotional disturbance” rather than autism — possibly because of
a cultural and clinical bias that wrongly associated minority children
with disruptive behavior.

This has often led to treatments and school placements different from
those given to their white autistic counterparts. In the documentary
“Refrigerator Mothers,” a mother named Dorothy Groomer recalled
doctors at the University of Illinois telling her decades ago that her
son could not have autism. “We did not fit their mold,” she says.
“We did not fit the classic mold for autism. Which is white, upper
middle class and very, very bright.”

Recent prevalence estimates for the Centers for Disease Control and
Prevention suggest that racial gaps in autism rates have narrowed, a
good sign that children once underserved are being identified and
getting the services denied to them in the past.

Had Isabel been born in the 1960s, she might have received any number
of diagnoses, because there was no standardized classification system
for disabilities in American schools. A child with the symptoms of
autism could be labeled a “slow learner,” “educable mentally
retarded,” “emotionally blocked” or any other term a school
system wanted to use.

It wasn’t until the passage of the 1975 Education for All
Handicapped Children Act that the federal government guaranteed that
all children with disabilities could go to school. Shortly after that,
a uniform set of disability categories was established, but the list
did not include autism until the early 1990s. It took many years
before autism programs were established in schools nationwide.

The proportion of children receiving special education services in the
United States has had only a small increase over the past couple of
decades, but the labels have changed. Many children who once might
have been classified as having an intellectual disability, emotional
disturbance or specific learning disability are now classified as
having autism.

Indeed, one study of special education enrollment data on 6.2 million
schoolchildren between 2000 and 2010 found that the reduction of
intellectual disability classifications alone accounted for 64 percent
of the rise in autism classifications during that decade. Such
reclassification helps explain how what may seem like an epidemic may
actually be the result of greater awareness and changing definitions.

WHEN MR. KENNEDY AND MR. TRUMP SEEK TO SIMPLIFY autism to fit their
own cause-and-effect narrative, they risk muting the voices of the
vast majority of autistic self-advocates, scientists and service
providers who do not find the Trump administration’s project
credible or even feasible. Mr. Kennedy and Mr. Trump also threaten to
disrupt the trajectory of the research that has made the science of
autism so vibrant and productive. What’s more, when they talk about
people with autism as casualties of a medicine or a vaccine, they risk
reinforcing the stereotype that people with autism are damaged, and
that this damage could have been prevented.

Remember Mr. Bettelheim? He demonstrates how just one person can
derail scientific progress. He had virtually no scientific training,
yet he convinced many that poor mothering was the single environmental
condition that could explain the causes of autism. Charismatic and
persuasive, he named himself an authority on autism and hijacked
clinical research for years. We lost time that could have been devoted
to other areas of study and wasted precious resources.

Instead of pursuing an ill-conceived search to link vaccines and
autism, we need wide-ranging research on how the genes associated with
autism work, how autism intersects with co-occurring conditions like
A.D.H.D., depression and anxiety, and how sex and gender play roles in
both the onset of symptoms and a person’s life experience.

There is an especially pressing need to study how people with autism
change over their life span, and which treatments and services help
them thrive. Autism research has long focused on children, but
people’s ability to change doesn’t end when they turn 21. Isabel
is today one of the happiest and busiest people I know, but many of
the strides she made to get there happened as an adult.

The history of autism also suggests that we need to have realistic
expectations about the pace of ethical science. Research in genetics
and neuroscience has produced a staggering number of discoveries, but
most have not yet been translated into novel ways to treat
neurological and mental disorders, even disorders that are already
well understood genetically (such as Huntington’s disease). Good
science takes years, not months.

What matters most to Isabel isn’t finding someone to blame, since
she likes herself the way she is. What matters to her is continuing to
build a meaningful life with the social supports and opportunities
that were unavailable to people with autism in the past.

We’ve come too far to go back to a time when autism was a
stigmatized condition defined solely in terms of deficits; when
mothers were made to feel guilty; when the pressures for conformity so
outweighed the desire for diversity that people with autism had few
chances to get an education or a job; when one person with power could
dominate the discourse on autism; and when the people whose well-being
was at stake were excluded from shaping the narratives and policies
that can alter their lives and happiness.

_[ROY RICHARD GRINKER is a cultural anthropologist who teaches about
mental health at George Washington University. His books include
“Nobody’s Normal: How Culture Created the Stigma of Mental Illness
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* autism
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* Science
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* Donald Trump
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* Robert F. Kennedy
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* Robert F. Kennedy Jr
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* RFK
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* Tylenol
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* genetics
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* neuroscience
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* neurobiology
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* research
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* medical science
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* children
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* pregnancy
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* vaccines
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* vaccinations
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