WEBVTT

00:00:00.882 --> 00:00:03.482
Just after Christmas last year,

00:00:03.482 --> 00:00:07.320
132 kids in California got the measles

00:00:07.320 --> 00:00:09.333
by either visiting Disneyland

00:00:09.333 --> 00:00:12.282
or being exposed to someone
who'd been there.

00:00:12.282 --> 00:00:15.486
The virus then hopped the Canadian border,

00:00:15.486 --> 00:00:18.922
infecting more than
100 children in Quebec.

00:00:18.922 --> 00:00:21.871
One of the tragic things
about this outbreak

00:00:21.871 --> 00:00:27.490
is that measles, which can be fatal
to a child with a weakened immune system,

00:00:27.490 --> 00:00:31.275
is one of the most easily
preventable diseases in the world.

00:00:31.275 --> 00:00:33.272
An effective vaccine against it

00:00:33.272 --> 00:00:36.638
has been available for more
than half a century,

00:00:36.638 --> 00:00:39.912
but many of the kids involved
in the Disneyland outbreak

00:00:39.912 --> 00:00:41.886
had not been vaccinated

00:00:41.886 --> 00:00:44.138
because their parents were afraid

00:00:44.138 --> 00:00:47.157
of something allegedly even worse:

00:00:47.157 --> 00:00:48.875
autism.

NOTE Paragraph

00:00:48.875 --> 00:00:52.658
But wait -- wasn't the paper
that sparked the controversy

00:00:52.658 --> 00:00:54.981
about autism and vaccines

00:00:54.981 --> 00:00:56.978
debunked, retracted,

00:00:56.978 --> 00:00:59.450
and branded a deliberate fraud

00:00:59.450 --> 00:01:01.158
by the British Medical Journal?

00:01:01.158 --> 00:01:03.201
Don't most science-savvy people

00:01:03.201 --> 00:01:07.520
know that the theory
that vaccines cause autism is B.S.?

00:01:07.520 --> 00:01:09.377
I think most of you do,

00:01:09.377 --> 00:01:11.955
but millions of parents worldwide

00:01:11.955 --> 00:01:16.573
continue to fear that vaccines
put their kids at risk for autism.

NOTE Paragraph

00:01:16.923 --> 00:01:18.047
Why?

00:01:18.827 --> 00:01:20.290
Here's why.

00:01:20.290 --> 00:01:25.375
This is a graph of autism
prevalence estimates rising over time.

00:01:25.375 --> 00:01:27.488
For most of the 20th century,

00:01:27.488 --> 00:01:31.180
autism was considered
an incredibly rare condition.

00:01:31.180 --> 00:01:34.500
The few psychologists and pediatricians
who'd even heard of it

00:01:34.500 --> 00:01:37.217
figured they would get through
their entire careers

00:01:37.217 --> 00:01:39.724
without seeing a single case.

00:01:40.364 --> 00:01:43.602
For decades, the prevalence estimates
remained stable

00:01:43.602 --> 00:01:46.853
at just three or four children in 10,000.

00:01:46.853 --> 00:01:48.919
But then, in the 1990s,

00:01:48.919 --> 00:01:51.380
the numbers started to skyrocket.

00:01:51.380 --> 00:01:54.608
Fundraising organizations
like Autism Speaks

00:01:54.608 --> 00:01:57.696
routinely refer to autism as an epidemic,

00:01:57.696 --> 00:02:01.365
as if you could catch it
from another kid at Disneyland.

NOTE Paragraph

00:02:01.365 --> 00:02:02.967
So what's going on?

00:02:02.967 --> 00:02:06.194
If it isn't vaccines, what is it?

00:02:06.194 --> 00:02:10.165
If you ask the folks down at
the Centers for Disease Control in Atlanta

00:02:10.165 --> 00:02:11.860
what's going on,

00:02:11.860 --> 00:02:16.370
they tend to rely on phrases like
"broadened diagnostic criteria"

00:02:16.370 --> 00:02:18.134
and "better case finding"

00:02:18.134 --> 00:02:20.711
to explain these rising numbers.

00:02:20.711 --> 00:02:22.731
But that kind of language

00:02:22.731 --> 00:02:25.680
doesn't do much to allay
the fears of a young mother

00:02:25.680 --> 00:02:30.324
who is searching her
two-year-old's face for eye contact.

00:02:30.324 --> 00:02:33.319
If the diagnostic criteria
had to be broadened,

00:02:33.319 --> 00:02:36.152
why were they so narrow
in the first place?

00:02:36.152 --> 00:02:39.147
Why were cases of autism
so hard to find

00:02:39.147 --> 00:02:41.437
before the 1990s?

NOTE Paragraph

00:02:41.437 --> 00:02:47.172
Five years ago, I decided to try
to uncover the answers to these questions.

00:02:47.172 --> 00:02:49.216
I learned that what happened

00:02:49.216 --> 00:02:53.116
has less to do with the slow and cautious
progress of science

00:02:53.116 --> 00:02:56.354
than it does with the seductive
power of storytelling.

00:02:56.544 --> 00:02:58.750
For most of the 20th century,

00:02:58.750 --> 00:03:01.211
clinicians told one story

00:03:01.211 --> 00:03:04.763
about what autism is
and how it was discovered,

00:03:04.763 --> 00:03:07.573
but that story turned out to be wrong,

00:03:07.573 --> 00:03:09.384
and the consequences of it

00:03:09.384 --> 00:03:13.285
are having a devastating impact
on global public health.

00:03:13.285 --> 00:03:16.814
There was a second,
more accurate story of autism

00:03:16.814 --> 00:03:19.430
which had been lost and forgotten

00:03:19.430 --> 00:03:22.410
in obscure corners
of the clinical literature.

00:03:22.410 --> 00:03:26.427
This second story tells us everything
about how we got here

00:03:26.427 --> 00:03:29.032
and where we need to go next.

NOTE Paragraph

00:03:29.352 --> 00:03:33.996
The first story starts with a child
psychiatrist at Johns Hopkins Hospital

00:03:33.996 --> 00:03:35.946
named Leo Kanner.

00:03:35.946 --> 00:03:39.499
In 1943, Kanner published a paper

00:03:39.499 --> 00:03:44.212
describing 11 young patients
who seemed to inhabit private worlds,

00:03:44.212 --> 00:03:46.302
ignoring the people around them,

00:03:46.302 --> 00:03:48.462
even their own parents.

00:03:48.462 --> 00:03:50.737
They could amuse themselves for hours

00:03:50.737 --> 00:03:53.384
by flapping their hands
in front of their faces,

00:03:53.384 --> 00:03:55.358
but they were panicked by little things

00:03:55.358 --> 00:03:58.970
like their favorite toy
being moved from its usual place

00:03:58.970 --> 00:04:00.977
without their knowledge.

00:04:00.977 --> 00:04:03.693
Based on the patients
who were brought to his clinic,

00:04:03.693 --> 00:04:07.269
Kanner speculated
that autism is very rare.

00:04:07.269 --> 00:04:11.727
By the 1950s, as the world's
leading authority on the subject,

00:04:11.727 --> 00:04:17.300
he declared that he had seen
less than 150 true cases of his syndrome

00:04:17.300 --> 00:04:21.363
while fielding referrals from
as far away as South Africa.

00:04:21.363 --> 00:04:23.754
That's actually not surprising,

00:04:23.754 --> 00:04:27.130
because Kanner's criteria
for diagnosing autism

00:04:27.130 --> 00:04:29.443
were incredibly selective.

00:04:29.443 --> 00:04:34.621
For example, he discouraged giving
the diagnosis to children who had seizures

00:04:34.621 --> 00:04:38.382
but now we know that epilepsy
is very common in autism.

00:04:38.382 --> 00:04:41.424
He once bragged that he had turned
nine out of 10 kids

00:04:41.424 --> 00:04:45.255
referred to his office as autistic
by other clinicians

00:04:45.255 --> 00:04:47.883
without giving them an autism diagnosis.

NOTE Paragraph

00:04:48.503 --> 00:04:50.944
Kanner was a smart guy,

00:04:50.944 --> 00:04:53.113
but a number of his theories
didn't pan out.

00:04:53.113 --> 00:04:56.888
He classified autism as a form
of infantile psychosis

00:04:56.888 --> 00:05:00.858
caused by cold and unaffectionate parents.

00:05:00.858 --> 00:05:02.995
These children, he said,

00:05:02.995 --> 00:05:07.313
had been kept neatly
in a refrigerator that didn't defrost.

00:05:07.313 --> 00:05:09.264
At the same time, however,

00:05:09.264 --> 00:05:12.189
Kanner noticed that some
of his young patients

00:05:12.189 --> 00:05:15.602
had special abilities
that clustered in certain areas

00:05:15.602 --> 00:05:18.853
like music, math and memory.

00:05:18.853 --> 00:05:20.734
One boy in his clinic

00:05:20.734 --> 00:05:25.328
could distinguish between 18 symphonies
before he turned two.

00:05:25.796 --> 00:05:28.443
When his mother put on
one of his favorite records,

00:05:28.443 --> 00:05:31.809
he would correctly declare,
"Beethoven!"

00:05:31.809 --> 00:05:34.665
But Kanner took a dim view
of these abilities,

00:05:34.665 --> 00:05:38.242
claiming that the kids
were just regurgitating things

00:05:38.242 --> 00:05:40.865
they'd heard their pompous parents say,

00:05:40.865 --> 00:05:43.465
desperate to earn their approval.

00:05:43.465 --> 00:05:48.829
As a result, autism became
a source of shame and stigma for families,

00:05:48.829 --> 00:05:51.406
and two generations of autistic children

00:05:51.406 --> 00:05:54.889
were shipped off to institutions
for their own good,

00:05:54.889 --> 00:05:58.163
becoming invisible to the world at large.

NOTE Paragraph

00:05:58.163 --> 00:06:02.400
Amazingly, it wasn't until the 1970s

00:06:02.400 --> 00:06:07.567
that researchers began to test
Kanner's theory that autism was rare.

00:06:07.567 --> 00:06:11.305
Lorna Wing was a cognitive
psychologist in London

00:06:11.305 --> 00:06:14.509
who thought that Kanner's theory
of refrigerator parenting

00:06:14.509 --> 00:06:17.528
were "bloody stupid," as she told me.

00:06:17.528 --> 00:06:21.707
She and her husband John were warm
and affectionate people,

00:06:21.707 --> 00:06:24.520
and they had a profoundly
autistic daughter named Susie.

00:06:25.110 --> 00:06:29.822
Lorna and John knew how hard it was
to raise a child like Susie

00:06:29.822 --> 00:06:31.784
without support services,

00:06:31.784 --> 00:06:33.386
special education,

00:06:33.386 --> 00:06:37.635
and the other resources that are
out of reach without a diagnosis.

00:06:37.635 --> 00:06:40.259
To make the case
to the National Health Service

00:06:40.259 --> 00:06:45.507
that more resources were needed
for autistic children and their families,

NOTE Paragraph

00:06:45.507 --> 00:06:47.643
Lorna and her colleague Judith Gould

00:06:47.643 --> 00:06:52.193
decided to do something that should
have been done 30 years earlier.

00:06:52.193 --> 00:06:57.139
They undertook a study of autism
prevalence in the general population.

00:06:57.139 --> 00:07:01.435
They pounded the pavement
in a London suburb called Camberwell

00:07:01.435 --> 00:07:05.100
to try to find autistic children
in the community.

00:07:05.100 --> 00:07:09.767
What they saw made clear
that Kanner's model was way too narrow,

00:07:09.767 --> 00:07:14.293
while the reality of autism
was much more colorful and diverse.

00:07:14.663 --> 00:07:16.806
Some kids couldn't talk at all,

00:07:16.806 --> 00:07:21.542
while others waxed on at length
about their fascination with astrophysics,

00:07:21.542 --> 00:07:25.486
dinosaurs or the genealogy of royalty.

00:07:25.486 --> 00:07:30.176
In other words, these children
didn't fit into nice, neat boxes,

00:07:30.176 --> 00:07:31.871
as Judith put it,

00:07:31.871 --> 00:07:33.752
and they saw lots of them,

00:07:33.752 --> 00:07:37.537
way more than Kanner's monolithic model
would have predicted.

NOTE Paragraph

00:07:37.537 --> 00:07:41.252
At first, they were at a loss
to make sense of their data.

00:07:41.252 --> 00:07:44.380
How had no one noticed
these children before?

00:07:44.380 --> 00:07:47.899
But then Lorna came upon a reference
to a paper that had been published

00:07:47.899 --> 00:07:50.554
in German in 1944,

00:07:50.554 --> 00:07:52.899
the year after Kanner's paper,

00:07:52.899 --> 00:07:54.617
and then forgotten,

00:07:54.617 --> 00:07:57.194
buried with the ashes of a terrible time

00:07:57.194 --> 00:08:00.445
that no one wanted to remember
or think about.

00:08:00.445 --> 00:08:03.115
Kanner knew about this competing paper,

00:08:03.115 --> 00:08:07.860
but scrupulously avoided
mentioning it in his own work.

00:08:07.860 --> 00:08:10.322
It had never even
been translated into English,

00:08:10.322 --> 00:08:13.285
but luckily, Lorna's husband spoke German,

00:08:13.285 --> 00:08:15.932
and he translated it for her.

NOTE Paragraph

00:08:15.932 --> 00:08:19.624
The paper offered
an alternate story of autism.

00:08:19.624 --> 00:08:22.317
Its author was a man named Hans Asperger,

00:08:22.317 --> 00:08:25.591
who ran a combination clinic
and residential school

00:08:25.591 --> 00:08:28.331
in Vienna in the 1930s.

00:08:28.331 --> 00:08:32.302
Asperger's ideas about teaching children
with learning differences

00:08:32.302 --> 00:08:35.436
were progressive even
by contemporary standards.

00:08:35.436 --> 00:08:39.848
Mornings at his clinic began
with exercise classes set to music,

00:08:39.848 --> 00:08:43.354
and the children put on plays
on Sunday afternoons.

00:08:43.354 --> 00:08:46.349
Instead of blaming parents
for causing autism,

00:08:46.349 --> 00:08:51.202
Asperger framed it as a lifelong,
polygenetic disability

00:08:51.202 --> 00:08:55.103
that requires compassionate forms
of support and accommodations

00:08:55.103 --> 00:08:58.510
over the course of one's whole life.

00:08:58.510 --> 00:09:01.395
Rather than treating the kids
in his clinic like patients,

00:09:01.395 --> 00:09:04.460
Asperger called them
his little professors,

00:09:04.460 --> 00:09:08.245
and enlisted their help in developing
methods of education

00:09:08.245 --> 00:09:10.729
that were particularly suited to them.

00:09:10.729 --> 00:09:16.460
Crucially, Asperger viewed autism
as a diverse continuum

00:09:16.460 --> 00:09:21.114
that spans an astonishing range
of giftedness and disability.

00:09:21.584 --> 00:09:25.116
He believed that autism
and autistic traits are common

00:09:25.116 --> 00:09:26.982
and always have been,

00:09:26.982 --> 00:09:32.276
seeing aspects of this continuum
in familiar archetypes from pop culture

00:09:32.276 --> 00:09:34.612
like the socially awkward scientist

00:09:34.612 --> 00:09:37.306
and the absent-minded professor.

00:09:37.306 --> 00:09:39.419
He went so far as to say,

00:09:39.419 --> 00:09:42.646
it seems that for success
in science and art,

00:09:42.646 --> 00:09:45.592
a dash of autism is essential.

NOTE Paragraph

00:09:46.292 --> 00:09:51.214
Lorna and Judith realized that Kanner
had been as wrong about autism being rare

00:09:51.214 --> 00:09:53.907
as he had been about parents causing it.

00:09:53.907 --> 00:09:55.951
Over the next several years,

00:09:55.951 --> 00:09:59.364
they quietly worked with
the American Psychiatric Association

00:09:59.364 --> 00:10:01.964
to broaden the criteria for diagnosis

00:10:01.964 --> 00:10:05.981
to reflect the diversity of what
they called "the autism spectrum."

00:10:05.981 --> 00:10:08.559
In the late '80s and early 1990s,

00:10:08.559 --> 00:10:10.857
their changes went into effect,

00:10:10.857 --> 00:10:13.226
swapping out Kanner's narrow model

00:10:13.226 --> 00:10:16.801
for Asperger's broad and inclusive one.

NOTE Paragraph

00:10:16.801 --> 00:10:19.472
These changes weren't
happening in a vacuum.

00:10:19.472 --> 00:10:23.326
By coincidence, as Lorna and Judith
worked behind the scenes

00:10:23.326 --> 00:10:25.160
to reform the criteria,

00:10:25.160 --> 00:10:30.176
people all over the world were seeing
an autistic adult for the first time.

00:10:30.176 --> 00:10:33.550
Before "Rain Man" came out in 1988,

00:10:33.550 --> 00:10:38.209
only a tiny, ingrown circle of experts
knew what autism looked like,

00:10:38.209 --> 00:10:42.969
but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt

00:10:42.969 --> 00:10:46.104
earned "Rain Man" four Academy Awards,

00:10:46.104 --> 00:10:48.844
pediatricians, psychologists,

00:10:48.844 --> 00:10:53.534
teachers and parents all over the world
knew what autism looked like.

NOTE Paragraph

00:10:53.534 --> 00:10:56.459
Coincidentally, at the same time,

00:10:56.459 --> 00:11:01.589
the first easy-to-use clinical tests
for diagnosing autism were introduced.

00:11:01.939 --> 00:11:06.629
You no longer had to have a connection
to that tiny circle of experts

00:11:06.629 --> 00:11:09.207
to get your child evaluated.

NOTE Paragraph

00:11:09.207 --> 00:11:11.320
The combination of "Rain Man,"

00:11:11.320 --> 00:11:15.499
the changes to the criteria,
and the introduction of these tests

00:11:15.499 --> 00:11:17.774
created a network effect,

00:11:17.774 --> 00:11:21.304
a perfect storm of autism awareness.

00:11:21.304 --> 00:11:24.322
The number of diagnoses started to soar,

00:11:24.322 --> 00:11:29.990
just as Lorna and Judith predicted,
indeed hoped, that it would,

00:11:29.990 --> 00:11:32.106
enabling autistic people
and their families

00:11:32.106 --> 00:11:35.798
to finally get the support
and services they deserved.

NOTE Paragraph

00:11:35.798 --> 00:11:37.864
Then Andrew Wakefield came along

00:11:37.864 --> 00:11:41.719
to blame the spike
in diagnoses on vaccines,

00:11:41.719 --> 00:11:43.832
a simple, powerful,

00:11:43.832 --> 00:11:46.618
and seductively believable story

00:11:46.618 --> 00:11:48.986
that was as wrong as Kanner's theory

00:11:48.986 --> 00:11:51.239
that autism was rare.

NOTE Paragraph

00:11:51.239 --> 00:11:54.710
If the CDC's current estimate,

00:11:54.710 --> 00:11:59.133
that one in 68 kids in America
are on the spectrum, is correct,

00:11:59.133 --> 00:12:03.340
autistics are one of the largest
minority groups in the world.

00:12:03.340 --> 00:12:07.167
In recent years, autistic people
have come together on the Internet

00:12:07.167 --> 00:12:10.812
to reject the notion that they
are puzzles to be solved

00:12:10.812 --> 00:12:12.995
by the next medical breakthrough,

00:12:12.995 --> 00:12:15.456
coining the term "neurodiversity"

00:12:15.456 --> 00:12:18.744
to celebrate the varieties
of human cognition.

NOTE Paragraph

00:12:19.264 --> 00:12:21.655
One way to understand neurodiversity

00:12:21.655 --> 00:12:25.324
is to think in terms
of human operating systems.

00:12:25.324 --> 00:12:30.240
Just because a P.C. is not running Windows
doesn't mean that it's broken.

00:12:30.240 --> 00:12:33.869
By autistic standards,
the normal human brain

00:12:33.869 --> 00:12:35.889
is easily distractable,

00:12:35.889 --> 00:12:37.677
obsessively social,

00:12:37.677 --> 00:12:40.997
and suffers from a deficit
of attention to detail.

00:12:40.997 --> 00:12:43.992
To be sure, autistic people
have a hard time

00:12:43.992 --> 00:12:46.268
living in a world not built for them.

00:12:46.268 --> 00:12:50.520
[Seventy] years later, we're still
catching up to Asperger,

00:12:50.520 --> 00:12:54.603
who believed that the "cure"
for the most disabling aspects of autism

00:12:54.603 --> 00:12:57.529
is to be found in understanding teachers,

00:12:57.529 --> 00:12:59.665
accommodating employers,

00:12:59.665 --> 00:13:01.522
supportive communities,

00:13:01.522 --> 00:13:04.866
and parents who have faith
in their children's potential.

NOTE Paragraph

00:13:04.866 --> 00:13:07.908
An autistic [man]
named Zosia Zaks once said,

00:13:07.908 --> 00:13:13.211
"We need all hands on deck
to right the ship of humanity."

00:13:13.211 --> 00:13:15.764
As we sail into an uncertain future,

00:13:15.764 --> 00:13:19.502
we need every form
of human intelligence on the planet

00:13:19.502 --> 00:13:25.469
working together to tackle
the challenges that we face as a society.

00:13:25.469 --> 00:13:27.791
We can't afford to waste a brain.

NOTE Paragraph

00:13:27.791 --> 00:13:30.136
Thank you.

NOTE Paragraph

00:13:30.136 --> 00:13:34.136
(Applause)