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TED2015

Steve Silberman: The forgotten history of autism

Filmed:

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.)

- 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

Just after Christmas last year,
00:12
132 kids in California got the measles
00:15
by either visiting Disneyland
00:19
or being exposed to someone
who'd been there.
00:21
The virus then hopped the Canadian border,
00:24
infecting more than
100 children in Quebec.
00:27
One of the tragic things
about this outbreak
00:30
is that measles, which can be fatal
to a child with a weakened immune system,
00:33
is one of the most easily
preventable diseases in the world.
00:39
An effective vaccine against it
00:43
has been available for more
than half a century,
00:45
but many of the kids involved
in the Disneyland outbreak
00:48
had not been vaccinated
00:51
because their parents were afraid
00:53
of something allegedly even worse:
00:56
autism.
00:59
But wait -- wasn't the paper
that sparked the controversy
01:00
about autism and vaccines
01:04
debunked, retracted,
01:06
and branded a deliberate fraud
01:08
by the British Medical Journal?
01:11
Don't most science-savvy people
01:13
know that the theory
that vaccines cause autism is B.S.?
01:15
I think most of you do,
01:19
but millions of parents worldwide
01:21
continue to fear that vaccines
put their kids at risk for autism.
01:23
Why?
01:28
Here's why.
01:30
This is a graph of autism
prevalence estimates rising over time.
01:32
For most of the 20th century,
01:37
autism was considered
an incredibly rare condition.
01:39
The few psychologists and pediatricians
who'd even heard of it
01:43
figured they would get through
their entire careers
01:46
without seeing a single case.
01:49
For decades, the prevalence estimates
remained stable
01:52
at just three or four children in 10,000.
01:55
But then, in the 1990s,
01:58
the numbers started to skyrocket.
02:00
Fundraising organizations
like Autism Speaks
02:03
routinely refer to autism as an epidemic,
02:06
as if you could catch it
from another kid at Disneyland.
02:09
So what's going on?
02:13
If it isn't vaccines, what is it?
02:14
If you ask the folks down at
the Centers for Disease Control in Atlanta
02:18
what's going on,
02:22
they tend to rely on phrases like
"broadened diagnostic criteria"
02:23
and "better case finding"
02:28
to explain these rising numbers.
02:30
But that kind of language
02:32
doesn't do much to allay
the fears of a young mother
02:34
who is searching her
two-year-old's face for eye contact.
02:37
If the diagnostic criteria
had to be broadened,
02:42
why were they so narrow
in the first place?
02:45
Why were cases of autism
so hard to find
02:48
before the 1990s?
02:51
Five years ago, I decided to try
to uncover the answers to these questions.
02:53
I learned that what happened
02:59
has less to do with the slow and cautious
progress of science
03:01
than it does with the seductive
power of storytelling.
03:05
For most of the 20th century,
03:08
clinicians told one story
03:10
about what autism is
and how it was discovered,
03:13
but that story turned out to be wrong,
03:16
and the consequences of it
03:19
are having a devastating impact
on global public health.
03:21
There was a second,
more accurate story of autism
03:25
which had been lost and forgotten
03:28
in obscure corners
of the clinical literature.
03:31
This second story tells us everything
about how we got here
03:34
and where we need to go next.
03:38
The first story starts with a child
psychiatrist at Johns Hopkins Hospital
03:41
named Leo Kanner.
03:45
In 1943, Kanner published a paper
03:47
describing 11 young patients
who seemed to inhabit private worlds,
03:51
ignoring the people around them,
03:56
even their own parents.
03:58
They could amuse themselves for hours
04:00
by flapping their hands
in front of their faces,
04:02
but they were panicked by little things
04:05
like their favorite toy
being moved from its usual place
04:07
without their knowledge.
04:10
Based on the patients
who were brought to his clinic,
04:12
Kanner speculated
that autism is very rare.
04:15
By the 1950s, as the world's
leading authority on the subject,
04:19
he declared that he had seen
less than 150 true cases of his syndrome
04:23
while fielding referrals from
as far away as South Africa.
04:29
That's actually not surprising,
04:33
because Kanner's criteria
for diagnosing autism
04:35
were incredibly selective.
04:39
For example, he discouraged giving
the diagnosis to children who had seizures
04:41
but now we know that epilepsy
is very common in autism.
04:46
He once bragged that he had turned
nine out of 10 kids
04:50
referred to his office as autistic
by other clinicians
04:53
without giving them an autism diagnosis.
04:57
Kanner was a smart guy,
05:00
but a number of his theories
didn't pan out.
05:02
He classified autism as a form
of infantile psychosis
05:05
caused by cold and unaffectionate parents.
05:08
These children, he said,
05:12
had been kept neatly
in a refrigerator that didn't defrost.
05:14
At the same time, however,
05:19
Kanner noticed that some
of his young patients
05:21
had special abilities
that clustered in certain areas
05:24
like music, math and memory.
05:27
One boy in his clinic
05:30
could distinguish between 18 symphonies
before he turned two.
05:32
When his mother put on
one of his favorite records,
05:37
he would correctly declare,
"Beethoven!"
05:40
But Kanner took a dim view
of these abilities,
05:43
claiming that the kids
were just regurgitating things
05:46
they'd heard their pompous parents say,
05:50
desperate to earn their approval.
05:52
As a result, autism became
a source of shame and stigma for families,
05:55
and two generations of autistic children
06:00
were shipped off to institutions
for their own good,
06:03
becoming invisible to the world at large.
06:06
Amazingly, it wasn't until the 1970s
06:10
that researchers began to test
Kanner's theory that autism was rare.
06:14
Lorna Wing was a cognitive
psychologist in London
06:19
who thought that Kanner's theory
of refrigerator parenting
06:23
were "bloody stupid," as she told me.
06:26
She and her husband John were warm
and affectionate people,
06:29
and they had a profoundly
autistic daughter named Susie.
06:33
Lorna and John knew how hard it was
to raise a child like Susie
06:37
without support services,
06:41
special education,
06:43
and the other resources that are
out of reach without a diagnosis.
06:45
To make the case
to the National Health Service
06:49
that more resources were needed
for autistic children and their families,
06:52
Lorna and her colleague Judith Gould
06:57
decided to do something that should
have been done 30 years earlier.
06:59
They undertook a study of autism
prevalence in the general population.
07:04
They pounded the pavement
in a London suburb called Camberwell
07:09
to try to find autistic children
in the community.
07:13
What they saw made clear
that Kanner's model was way too narrow,
07:17
while the reality of autism
was much more colorful and diverse.
07:21
Some kids couldn't talk at all,
07:26
while others waxed on at length
about their fascination with astrophysics,
07:28
dinosaurs or the genealogy of royalty.
07:33
In other words, these children
didn't fit into nice, neat boxes,
07:37
as Judith put it,
07:42
and they saw lots of them,
07:43
way more than Kanner's monolithic model
would have predicted.
07:45
At first, they were at a loss
to make sense of their data.
07:49
How had no one noticed
these children before?
07:53
But then Lorna came upon a reference
to a paper that had been published
07:56
in German in 1944,
07:59
the year after Kanner's paper,
08:02
and then forgotten,
08:04
buried with the ashes of a terrible time
08:06
that no one wanted to remember
or think about.
08:09
Kanner knew about this competing paper,
08:12
but scrupulously avoided
mentioning it in his own work.
08:15
It had never even
been translated into English,
08:19
but luckily, Lorna's husband spoke German,
08:22
and he translated it for her.
08:25
The paper offered
an alternate story of autism.
08:27
Its author was a man named Hans Asperger,
08:31
who ran a combination clinic
and residential school
08:34
in Vienna in the 1930s.
08:37
Asperger's ideas about teaching children
with learning differences
08:40
were progressive even
by contemporary standards.
08:44
Mornings at his clinic began
with exercise classes set to music,
08:47
and the children put on plays
on Sunday afternoons.
08:51
Instead of blaming parents
for causing autism,
08:55
Asperger framed it as a lifelong,
polygenetic disability
08:58
that requires compassionate forms
of support and accommodations
09:03
over the course of one's whole life.
09:07
Rather than treating the kids
in his clinic like patients,
09:10
Asperger called them
his little professors,
09:13
and enlisted their help in developing
methods of education
09:16
that were particularly suited to them.
09:20
Crucially, Asperger viewed autism
as a diverse continuum
09:22
that spans an astonishing range
of giftedness and disability.
09:28
He believed that autism
and autistic traits are common
09:33
and always have been,
09:37
seeing aspects of this continuum
in familiar archetypes from pop culture
09:38
like the socially awkward scientist
09:44
and the absent-minded professor.
09:46
He went so far as to say,
09:49
it seems that for success
in science and art,
09:51
a dash of autism is essential.
09:54
Lorna and Judith realized that Kanner
had been as wrong about autism being rare
09:58
as he had been about parents causing it.
10:03
Over the next several years,
10:05
they quietly worked with
the American Psychiatric Association
10:07
to broaden the criteria for diagnosis
10:11
to reflect the diversity of what
they called "the autism spectrum."
10:13
In the late '80s and early 1990s,
10:17
their changes went into effect,
10:20
swapping out Kanner's narrow model
10:22
for Asperger's broad and inclusive one.
10:25
These changes weren't
happening in a vacuum.
10:28
By coincidence, as Lorna and Judith
worked behind the scenes
10:31
to reform the criteria,
10:35
people all over the world were seeing
an autistic adult for the first time.
10:37
Before "Rain Man" came out in 1988,
10:42
only a tiny, ingrown circle of experts
knew what autism looked like,
10:45
but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt
10:50
earned "Rain Man" four Academy Awards,
10:54
pediatricians, psychologists,
10:58
teachers and parents all over the world
knew what autism looked like.
11:00
Coincidentally, at the same time,
11:05
the first easy-to-use clinical tests
for diagnosing autism were introduced.
11:08
You no longer had to have a connection
to that tiny circle of experts
11:13
to get your child evaluated.
11:18
The combination of "Rain Man,"
11:21
the changes to the criteria,
and the introduction of these tests
11:23
created a network effect,
11:27
a perfect storm of autism awareness.
11:29
The number of diagnoses started to soar,
11:33
just as Lorna and Judith predicted,
indeed hoped, that it would,
11:36
enabling autistic people
and their families
11:41
to finally get the support
and services they deserved.
11:44
Then Andrew Wakefield came along
11:47
to blame the spike
in diagnoses on vaccines,
11:49
a simple, powerful,
11:53
and seductively believable story
11:55
that was as wrong as Kanner's theory
11:58
that autism was rare.
12:00
If the CDC's current estimate,
12:03
that one in 68 kids in America
are on the spectrum, is correct,
12:06
autistics are one of the largest
minority groups in the world.
12:11
In recent years, autistic people
have come together on the Internet
12:15
to reject the notion that they
are puzzles to be solved
12:19
by the next medical breakthrough,
12:22
coining the term "neurodiversity"
12:24
to celebrate the varieties
of human cognition.
12:27
One way to understand neurodiversity
12:31
is to think in terms
of human operating systems.
12:33
Just because a P.C. is not running Windows
doesn't mean that it's broken.
12:37
By autistic standards,
the normal human brain
12:42
is easily distractable,
12:45
obsessively social,
12:47
and suffers from a deficit
of attention to detail.
12:49
To be sure, autistic people
have a hard time
12:52
living in a world not built for them.
12:55
[Seventy] years later, we're still
catching up to Asperger,
12:58
who believed that the "cure"
for the most disabling aspects of autism
13:02
is to be found in understanding teachers,
13:06
accommodating employers,
13:09
supportive communities,
13:11
and parents who have faith
in their children's potential.
13:13
An autistic woman
named Zosia Zaks once said,
13:16
"We need all hands on deck
to right the ship of humanity."
13:19
As we sail into an uncertain future,
13:25
we need every form
of human intelligence on the planet
13:27
working together to tackle
the challenges that we face as a society.
13:31
We can't afford to waste a brain.
13:37
Thank you.
13:39
(Applause)
13:42

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About the Speaker:

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.

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 speaker
Steve Silberman | Speaker | TED.com