TED2015
Steve Silberman: The forgotten history of autism
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Decades ago, few pediatricians had heard of autism. In 1975, 1 in 5,000 kids was estimated to have it. Today, 1 in 68 is on the autism spectrum. What caused this steep rise? Steve Silberman points to “a perfect storm of autism awareness” — a pair of psychologists with an accepting view, an unexpected pop culture moment and a new clinical test. But to really understand, we have to go back further to an Austrian doctor by the name of Hans Asperger, who published a pioneering paper in 1944. Because it was buried in time, autism has been shrouded in misunderstanding ever since. (This talk was part of a TED2015 session curated by Pop-Up Magazine: popupmagazine.com or @popupmag on Twitter.)
Steve Silberman - Writer and editor
Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius. Full bio
Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius. Full bio
Double-click the English transcript below to play the video.
00:12
Just after Christmas last year,
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132 kids in California got the measles
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by either visiting Disneyland
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or being exposed to someone
who'd been there.
who'd been there.
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The virus then hopped the Canadian border,
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infecting more than
100 children in Quebec.
100 children in Quebec.
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One of the tragic things
about this outbreak
about this outbreak
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is that measles, which can be fatal
to a child with a weakened immune system,
to a child with a weakened immune system,
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is one of the most easily
preventable diseases in the world.
preventable diseases in the world.
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An effective vaccine against it
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has been available for more
than half a century,
than half a century,
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but many of the kids involved
in the Disneyland outbreak
in the Disneyland outbreak
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had not been vaccinated
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because their parents were afraid
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of something allegedly even worse:
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autism.
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But wait -- wasn't the paper
that sparked the controversy
that sparked the controversy
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about autism and vaccines
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debunked, retracted,
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and branded a deliberate fraud
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by the British Medical Journal?
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Don't most science-savvy people
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know that the theory
that vaccines cause autism is B.S.?
that vaccines cause autism is B.S.?
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I think most of you do,
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but millions of parents worldwide
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continue to fear that vaccines
put their kids at risk for autism.
put their kids at risk for autism.
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Why?
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Here's why.
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This is a graph of autism
prevalence estimates rising over time.
prevalence estimates rising over time.
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For most of the 20th century,
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autism was considered
an incredibly rare condition.
an incredibly rare condition.
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The few psychologists and pediatricians
who'd even heard of it
who'd even heard of it
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figured they would get through
their entire careers
their entire careers
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without seeing a single case.
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For decades, the prevalence estimates
remained stable
remained stable
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at just three or four children in 10,000.
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But then, in the 1990s,
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the numbers started to skyrocket.
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Fundraising organizations
like Autism Speaks
like Autism Speaks
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routinely refer to autism as an epidemic,
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as if you could catch it
from another kid at Disneyland.
from another kid at Disneyland.
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So what's going on?
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If it isn't vaccines, what is it?
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If you ask the folks down at
the Centers for Disease Control in Atlanta
the Centers for Disease Control in Atlanta
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what's going on,
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they tend to rely on phrases like
"broadened diagnostic criteria"
"broadened diagnostic criteria"
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and "better case finding"
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to explain these rising numbers.
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But that kind of language
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doesn't do much to allay
the fears of a young mother
the fears of a young mother
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who is searching her
two-year-old's face for eye contact.
two-year-old's face for eye contact.
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If the diagnostic criteria
had to be broadened,
had to be broadened,
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why were they so narrow
in the first place?
in the first place?
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Why were cases of autism
so hard to find
so hard to find
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before the 1990s?
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Five years ago, I decided to try
to uncover the answers to these questions.
to uncover the answers to these questions.
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I learned that what happened
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has less to do with the slow and cautious
progress of science
progress of science
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than it does with the seductive
power of storytelling.
power of storytelling.
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For most of the 20th century,
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clinicians told one story
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about what autism is
and how it was discovered,
and how it was discovered,
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but that story turned out to be wrong,
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and the consequences of it
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are having a devastating impact
on global public health.
on global public health.
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There was a second,
more accurate story of autism
more accurate story of autism
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which had been lost and forgotten
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in obscure corners
of the clinical literature.
of the clinical literature.
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This second story tells us everything
about how we got here
about how we got here
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and where we need to go next.
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The first story starts with a child
psychiatrist at Johns Hopkins Hospital
psychiatrist at Johns Hopkins Hospital
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named Leo Kanner.
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In 1943, Kanner published a paper
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describing 11 young patients
who seemed to inhabit private worlds,
who seemed to inhabit private worlds,
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ignoring the people around them,
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even their own parents.
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They could amuse themselves for hours
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by flapping their hands
in front of their faces,
in front of their faces,
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but they were panicked by little things
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like their favorite toy
being moved from its usual place
being moved from its usual place
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without their knowledge.
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Based on the patients
who were brought to his clinic,
who were brought to his clinic,
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Kanner speculated
that autism is very rare.
that autism is very rare.
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By the 1950s, as the world's
leading authority on the subject,
leading authority on the subject,
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he declared that he had seen
less than 150 true cases of his syndrome
less than 150 true cases of his syndrome
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while fielding referrals from
as far away as South Africa.
as far away as South Africa.
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That's actually not surprising,
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because Kanner's criteria
for diagnosing autism
for diagnosing autism
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were incredibly selective.
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For example, he discouraged giving
the diagnosis to children who had seizures
the diagnosis to children who had seizures
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but now we know that epilepsy
is very common in autism.
is very common in autism.
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He once bragged that he had turned
nine out of 10 kids
nine out of 10 kids
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referred to his office as autistic
by other clinicians
by other clinicians
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without giving them an autism diagnosis.
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Kanner was a smart guy,
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but a number of his theories
didn't pan out.
didn't pan out.
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He classified autism as a form
of infantile psychosis
of infantile psychosis
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caused by cold and unaffectionate parents.
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These children, he said,
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had been kept neatly
in a refrigerator that didn't defrost.
in a refrigerator that didn't defrost.
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At the same time, however,
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Kanner noticed that some
of his young patients
of his young patients
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had special abilities
that clustered in certain areas
that clustered in certain areas
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like music, math and memory.
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One boy in his clinic
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could distinguish between 18 symphonies
before he turned two.
before he turned two.
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When his mother put on
one of his favorite records,
one of his favorite records,
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he would correctly declare,
"Beethoven!"
"Beethoven!"
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But Kanner took a dim view
of these abilities,
of these abilities,
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claiming that the kids
were just regurgitating things
were just regurgitating things
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they'd heard their pompous parents say,
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desperate to earn their approval.
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As a result, autism became
a source of shame and stigma for families,
a source of shame and stigma for families,
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and two generations of autistic children
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were shipped off to institutions
for their own good,
for their own good,
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becoming invisible to the world at large.
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Amazingly, it wasn't until the 1970s
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that researchers began to test
Kanner's theory that autism was rare.
Kanner's theory that autism was rare.
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Lorna Wing was a cognitive
psychologist in London
psychologist in London
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who thought that Kanner's theory
of refrigerator parenting
of refrigerator parenting
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were "bloody stupid," as she told me.
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She and her husband John were warm
and affectionate people,
and affectionate people,
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and they had a profoundly
autistic daughter named Susie.
autistic daughter named Susie.
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Lorna and John knew how hard it was
to raise a child like Susie
to raise a child like Susie
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without support services,
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special education,
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and the other resources that are
out of reach without a diagnosis.
out of reach without a diagnosis.
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To make the case
to the National Health Service
to the National Health Service
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that more resources were needed
for autistic children and their families,
for autistic children and their families,
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Lorna and her colleague Judith Gould
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decided to do something that should
have been done 30 years earlier.
have been done 30 years earlier.
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They undertook a study of autism
prevalence in the general population.
prevalence in the general population.
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They pounded the pavement
in a London suburb called Camberwell
in a London suburb called Camberwell
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to try to find autistic children
in the community.
in the community.
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What they saw made clear
that Kanner's model was way too narrow,
that Kanner's model was way too narrow,
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while the reality of autism
was much more colorful and diverse.
was much more colorful and diverse.
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Some kids couldn't talk at all,
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while others waxed on at length
about their fascination with astrophysics,
about their fascination with astrophysics,
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dinosaurs or the genealogy of royalty.
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In other words, these children
didn't fit into nice, neat boxes,
didn't fit into nice, neat boxes,
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as Judith put it,
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and they saw lots of them,
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way more than Kanner's monolithic model
would have predicted.
would have predicted.
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At first, they were at a loss
to make sense of their data.
to make sense of their data.
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How had no one noticed
these children before?
these children before?
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But then Lorna came upon a reference
to a paper that had been published
to a paper that had been published
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in German in 1944,
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the year after Kanner's paper,
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and then forgotten,
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buried with the ashes of a terrible time
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that no one wanted to remember
or think about.
or think about.
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Kanner knew about this competing paper,
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but scrupulously avoided
mentioning it in his own work.
mentioning it in his own work.
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It had never even
been translated into English,
been translated into English,
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but luckily, Lorna's husband spoke German,
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and he translated it for her.
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The paper offered
an alternate story of autism.
an alternate story of autism.
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Its author was a man named Hans Asperger,
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who ran a combination clinic
and residential school
and residential school
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in Vienna in the 1930s.
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Asperger's ideas about teaching children
with learning differences
with learning differences
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were progressive even
by contemporary standards.
by contemporary standards.
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Mornings at his clinic began
with exercise classes set to music,
with exercise classes set to music,
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and the children put on plays
on Sunday afternoons.
on Sunday afternoons.
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Instead of blaming parents
for causing autism,
for causing autism,
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Asperger framed it as a lifelong,
polygenetic disability
polygenetic disability
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that requires compassionate forms
of support and accommodations
of support and accommodations
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over the course of one's whole life.
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Rather than treating the kids
in his clinic like patients,
in his clinic like patients,
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Asperger called them
his little professors,
his little professors,
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and enlisted their help in developing
methods of education
methods of education
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that were particularly suited to them.
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Crucially, Asperger viewed autism
as a diverse continuum
as a diverse continuum
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that spans an astonishing range
of giftedness and disability.
of giftedness and disability.
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He believed that autism
and autistic traits are common
and autistic traits are common
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and always have been,
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seeing aspects of this continuum
in familiar archetypes from pop culture
in familiar archetypes from pop culture
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like the socially awkward scientist
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and the absent-minded professor.
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He went so far as to say,
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it seems that for success
in science and art,
in science and art,
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a dash of autism is essential.
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Lorna and Judith realized that Kanner
had been as wrong about autism being rare
had been as wrong about autism being rare
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as he had been about parents causing it.
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Over the next several years,
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they quietly worked with
the American Psychiatric Association
the American Psychiatric Association
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to broaden the criteria for diagnosis
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to reflect the diversity of what
they called "the autism spectrum."
they called "the autism spectrum."
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In the late '80s and early 1990s,
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their changes went into effect,
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swapping out Kanner's narrow model
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for Asperger's broad and inclusive one.
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These changes weren't
happening in a vacuum.
happening in a vacuum.
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By coincidence, as Lorna and Judith
worked behind the scenes
worked behind the scenes
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to reform the criteria,
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people all over the world were seeing
an autistic adult for the first time.
an autistic adult for the first time.
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Before "Rain Man" came out in 1988,
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only a tiny, ingrown circle of experts
knew what autism looked like,
knew what autism looked like,
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but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt
performance as Raymond Babbitt
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earned "Rain Man" four Academy Awards,
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pediatricians, psychologists,
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teachers and parents all over the world
knew what autism looked like.
knew what autism looked like.
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Coincidentally, at the same time,
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the first easy-to-use clinical tests
for diagnosing autism were introduced.
for diagnosing autism were introduced.
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You no longer had to have a connection
to that tiny circle of experts
to that tiny circle of experts
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to get your child evaluated.
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The combination of "Rain Man,"
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the changes to the criteria,
and the introduction of these tests
and the introduction of these tests
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created a network effect,
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a perfect storm of autism awareness.
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The number of diagnoses started to soar,
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just as Lorna and Judith predicted,
indeed hoped, that it would,
indeed hoped, that it would,
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enabling autistic people
and their families
and their families
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to finally get the support
and services they deserved.
and services they deserved.
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Then Andrew Wakefield came along
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to blame the spike
in diagnoses on vaccines,
in diagnoses on vaccines,
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a simple, powerful,
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and seductively believable story
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that was as wrong as Kanner's theory
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that autism was rare.
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If the CDC's current estimate,
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that one in 68 kids in America
are on the spectrum, is correct,
are on the spectrum, is correct,
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autistics are one of the largest
minority groups in the world.
minority groups in the world.
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In recent years, autistic people
have come together on the Internet
have come together on the Internet
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to reject the notion that they
are puzzles to be solved
are puzzles to be solved
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by the next medical breakthrough,
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coining the term "neurodiversity"
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to celebrate the varieties
of human cognition.
of human cognition.
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One way to understand neurodiversity
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is to think in terms
of human operating systems.
of human operating systems.
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Just because a P.C. is not running Windows
doesn't mean that it's broken.
doesn't mean that it's broken.
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By autistic standards,
the normal human brain
the normal human brain
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is easily distractable,
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obsessively social,
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and suffers from a deficit
of attention to detail.
of attention to detail.
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To be sure, autistic people
have a hard time
have a hard time
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living in a world not built for them.
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[Seventy] years later, we're still
catching up to Asperger,
catching up to Asperger,
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who believed that the "cure"
for the most disabling aspects of autism
for the most disabling aspects of autism
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is to be found in understanding teachers,
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accommodating employers,
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supportive communities,
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and parents who have faith
in their children's potential.
in their children's potential.
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An autistic woman
named Zosia Zaks once said,
named Zosia Zaks once said,
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"We need all hands on deck
to right the ship of humanity."
to right the ship of humanity."
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As we sail into an uncertain future,
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we need every form
of human intelligence on the planet
of human intelligence on the planet
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working together to tackle
the challenges that we face as a society.
the challenges that we face as a society.
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We can't afford to waste a brain.
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Thank you.
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(Applause)
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ABOUT THE SPEAKER
Steve Silberman - Writer and editorSteve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius.
Why you should listen
Steve Silberman is a writer and contributing editor for Wired and other national magazines. In 2001, he published "The Geek Syndrome," one of the first articles in the mainstream press to probe the complex relationship between autism and genius. The article was praised by experts in the field like neurologist Oliver Sacks and author Temple Grandin, but as time went on, Silberman was haunted by the biggest question that he had left unanswered: Why have rates of autism diagnosis increased so steeply in the past 30 years?
This question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.
A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.
More profile about the speakerThis question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.
A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.
Steve Silberman | Speaker | TED.com