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
TED2015

Steve Silberman: The forgotten history of autism

Filmed:
1,699,224 views

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

Double-click the English transcript below to play the video.

00:12
Just after Christmas last year,
0
882
2600
00:15
132 kids in California got the measles
1
3482
3838
00:19
by either visiting Disneyland
2
7320
2013
00:21
or being exposed to someone
who'd been there.
3
9333
2949
00:24
The virus then hopped the Canadian border,
4
12282
3204
00:27
infecting more than
100 children in Quebec.
5
15486
3436
00:30
One of the tragic things
about this outbreak
6
18922
2949
00:33
is that measles, which can be fatal
to a child with a weakened immune system,
7
21871
5619
00:39
is one of the most easily
preventable diseases in the world.
8
27490
3785
00:43
An effective vaccine against it
9
31275
1997
00:45
has been available for more
than half a century,
10
33272
3366
00:48
but many of the kids involved
in the Disneyland outbreak
11
36638
3274
00:51
had not been vaccinated
12
39912
1974
00:53
because their parents were afraid
13
41886
2252
00:56
of something allegedly even worse:
14
44138
3019
00:59
autism.
15
47157
1718
01:00
But wait -- wasn't the paper
that sparked the controversy
16
48875
3783
01:04
about autism and vaccines
17
52658
2323
01:06
debunked, retracted,
18
54981
1997
01:08
and branded a deliberate fraud
19
56978
2472
01:11
by the British Medical Journal?
20
59450
1708
01:13
Don't most science-savvy people
21
61158
2043
01:15
know that the theory
that vaccines cause autism is B.S.?
22
63201
4319
01:19
I think most of you do,
23
67520
1857
01:21
but millions of parents worldwide
24
69377
2578
01:23
continue to fear that vaccines
put their kids at risk for autism.
25
71955
4618
01:28
Why?
26
76923
1124
01:30
Here's why.
27
78827
1463
01:32
This is a graph of autism
prevalence estimates rising over time.
28
80290
5085
01:37
For most of the 20th century,
29
85375
2113
01:39
autism was considered
an incredibly rare condition.
30
87488
3692
01:43
The few psychologists and pediatricians
who'd even heard of it
31
91180
3320
01:46
figured they would get through
their entire careers
32
94500
2717
01:49
without seeing a single case.
33
97217
2507
01:52
For decades, the prevalence estimates
remained stable
34
100364
3238
01:55
at just three or four children in 10,000.
35
103602
3251
01:58
But then, in the 1990s,
36
106853
2066
02:00
the numbers started to skyrocket.
37
108919
2461
02:03
Fundraising organizations
like Autism Speaks
38
111380
3228
02:06
routinely refer to autism as an epidemic,
39
114608
3088
02:09
as if you could catch it
from another kid at Disneyland.
40
117696
3669
02:13
So what's going on?
41
121365
1602
02:14
If it isn't vaccines, what is it?
42
122967
3227
02:18
If you ask the folks down at
the Centers for Disease Control in Atlanta
43
126194
3971
02:22
what's going on,
44
130165
1695
02:23
they tend to rely on phrases like
"broadened diagnostic criteria"
45
131860
4510
02:28
and "better case finding"
46
136370
1764
02:30
to explain these rising numbers.
47
138134
2577
02:32
But that kind of language
48
140711
2020
02:34
doesn't do much to allay
the fears of a young mother
49
142731
2949
02:37
who is searching her
two-year-old's face for eye contact.
50
145680
4644
02:42
If the diagnostic criteria
had to be broadened,
51
150324
2995
02:45
why were they so narrow
in the first place?
52
153319
2833
02:48
Why were cases of autism
so hard to find
53
156152
2995
02:51
before the 1990s?
54
159147
2290
02:53
Five years ago, I decided to try
to uncover the answers to these questions.
55
161437
5735
02:59
I learned that what happened
56
167172
2044
03:01
has less to do with the slow and cautious
progress of science
57
169216
3900
03:05
than it does with the seductive
power of storytelling.
58
173116
3238
03:08
For most of the 20th century,
59
176544
2206
03:10
clinicians told one story
60
178750
2461
03:13
about what autism is
and how it was discovered,
61
181211
3552
03:16
but that story turned out to be wrong,
62
184763
2810
03:19
and the consequences of it
63
187573
1811
03:21
are having a devastating impact
on global public health.
64
189384
3901
03:25
There was a second,
more accurate story of autism
65
193285
3529
03:28
which had been lost and forgotten
66
196814
2616
03:31
in obscure corners
of the clinical literature.
67
199430
2980
03:34
This second story tells us everything
about how we got here
68
202410
4017
03:38
and where we need to go next.
69
206427
2605
03:41
The first story starts with a child
psychiatrist at Johns Hopkins Hospital
70
209352
4644
03:45
named Leo Kanner.
71
213996
1950
03:47
In 1943, Kanner published a paper
72
215946
3553
03:51
describing 11 young patients
who seemed to inhabit private worlds,
73
219499
4713
03:56
ignoring the people around them,
74
224212
2090
03:58
even their own parents.
75
226302
2160
04:00
They could amuse themselves for hours
76
228462
2275
04:02
by flapping their hands
in front of their faces,
77
230737
2647
04:05
but they were panicked by little things
78
233384
1974
04:07
like their favorite toy
being moved from its usual place
79
235358
3612
04:10
without their knowledge.
80
238970
2007
04:12
Based on the patients
who were brought to his clinic,
81
240977
2716
04:15
Kanner speculated
that autism is very rare.
82
243693
3576
04:19
By the 1950s, as the world's
leading authority on the subject,
83
247269
4458
04:23
he declared that he had seen
less than 150 true cases of his syndrome
84
251727
5573
04:29
while fielding referrals from
as far away as South Africa.
85
257300
4063
04:33
That's actually not surprising,
86
261363
2391
04:35
because Kanner's criteria
for diagnosing autism
87
263754
3376
04:39
were incredibly selective.
88
267130
2313
04:41
For example, he discouraged giving
the diagnosis to children who had seizures
89
269443
5178
04:46
but now we know that epilepsy
is very common in autism.
90
274621
3761
04:50
He once bragged that he had turned
nine out of 10 kids
91
278382
3042
04:53
referred to his office as autistic
by other clinicians
92
281424
3831
04:57
without giving them an autism diagnosis.
93
285255
2628
05:00
Kanner was a smart guy,
94
288503
2441
05:02
but a number of his theories
didn't pan out.
95
290944
2169
05:05
He classified autism as a form
of infantile psychosis
96
293113
3775
05:08
caused by cold and unaffectionate parents.
97
296888
3970
05:12
These children, he said,
98
300858
2137
05:14
had been kept neatly
in a refrigerator that didn't defrost.
99
302995
4318
05:19
At the same time, however,
100
307313
1951
05:21
Kanner noticed that some
of his young patients
101
309264
2925
05:24
had special abilities
that clustered in certain areas
102
312189
3413
05:27
like music, math and memory.
103
315602
3251
05:30
One boy in his clinic
104
318853
1881
05:32
could distinguish between 18 symphonies
before he turned two.
105
320734
4594
05:37
When his mother put on
one of his favorite records,
106
325796
2647
05:40
he would correctly declare,
"Beethoven!"
107
328443
3366
05:43
But Kanner took a dim view
of these abilities,
108
331809
2856
05:46
claiming that the kids
were just regurgitating things
109
334665
3577
05:50
they'd heard their pompous parents say,
110
338242
2623
05:52
desperate to earn their approval.
111
340865
2600
05:55
As a result, autism became
a source of shame and stigma for families,
112
343465
5364
06:00
and two generations of autistic children
113
348829
2577
06:03
were shipped off to institutions
for their own good,
114
351406
3483
06:06
becoming invisible to the world at large.
115
354889
3274
06:10
Amazingly, it wasn't until the 1970s
116
358163
4237
06:14
that researchers began to test
Kanner's theory that autism was rare.
117
362400
5167
06:19
Lorna Wing was a cognitive
psychologist in London
118
367567
3738
06:23
who thought that Kanner's theory
of refrigerator parenting
119
371305
3204
06:26
were "bloody stupid," as she told me.
120
374509
3019
06:29
She and her husband John were warm
and affectionate people,
121
377528
4179
06:33
and they had a profoundly
autistic daughter named Susie.
122
381707
2813
06:37
Lorna and John knew how hard it was
to raise a child like Susie
123
385110
4712
06:41
without support services,
124
389822
1962
06:43
special education,
125
391784
1602
06:45
and the other resources that are
out of reach without a diagnosis.
126
393386
4249
06:49
To make the case
to the National Health Service
127
397635
2624
06:52
that more resources were needed
for autistic children and their families,
128
400259
5248
06:57
Lorna and her colleague Judith Gould
129
405507
2136
06:59
decided to do something that should
have been done 30 years earlier.
130
407643
4550
07:04
They undertook a study of autism
prevalence in the general population.
131
412193
4946
07:09
They pounded the pavement
in a London suburb called Camberwell
132
417139
4296
07:13
to try to find autistic children
in the community.
133
421435
3665
07:17
What they saw made clear
that Kanner's model was way too narrow,
134
425100
4667
07:21
while the reality of autism
was much more colorful and diverse.
135
429767
4526
07:26
Some kids couldn't talk at all,
136
434663
2143
07:28
while others waxed on at length
about their fascination with astrophysics,
137
436806
4736
07:33
dinosaurs or the genealogy of royalty.
138
441542
3944
07:37
In other words, these children
didn't fit into nice, neat boxes,
139
445486
4690
07:42
as Judith put it,
140
450176
1695
07:43
and they saw lots of them,
141
451871
1881
07:45
way more than Kanner's monolithic model
would have predicted.
142
453752
3785
07:49
At first, they were at a loss
to make sense of their data.
143
457537
3715
07:53
How had no one noticed
these children before?
144
461252
3128
07:56
But then Lorna came upon a reference
to a paper that had been published
145
464380
3519
07:59
in German in 1944,
146
467899
2655
08:02
the year after Kanner's paper,
147
470554
2345
08:04
and then forgotten,
148
472899
1718
08:06
buried with the ashes of a terrible time
149
474617
2577
08:09
that no one wanted to remember
or think about.
150
477194
3251
08:12
Kanner knew about this competing paper,
151
480445
2670
08:15
but scrupulously avoided
mentioning it in his own work.
152
483115
4745
08:19
It had never even
been translated into English,
153
487860
2462
08:22
but luckily, Lorna's husband spoke German,
154
490322
2963
08:25
and he translated it for her.
155
493285
2647
08:27
The paper offered
an alternate story of autism.
156
495932
3692
08:31
Its author was a man named Hans Asperger,
157
499624
2693
08:34
who ran a combination clinic
and residential school
158
502317
3274
08:37
in Vienna in the 1930s.
159
505591
2740
08:40
Asperger's ideas about teaching children
with learning differences
160
508331
3971
08:44
were progressive even
by contemporary standards.
161
512302
3134
08:47
Mornings at his clinic began
with exercise classes set to music,
162
515436
4412
08:51
and the children put on plays
on Sunday afternoons.
163
519848
3506
08:55
Instead of blaming parents
for causing autism,
164
523354
2995
08:58
Asperger framed it as a lifelong,
polygenetic disability
165
526349
4853
09:03
that requires compassionate forms
of support and accommodations
166
531202
3901
09:07
over the course of one's whole life.
167
535103
3407
09:10
Rather than treating the kids
in his clinic like patients,
168
538510
2885
09:13
Asperger called them
his little professors,
169
541395
3065
09:16
and enlisted their help in developing
methods of education
170
544460
3785
09:20
that were particularly suited to them.
171
548245
2484
09:22
Crucially, Asperger viewed autism
as a diverse continuum
172
550729
5731
09:28
that spans an astonishing range
of giftedness and disability.
173
556460
4654
09:33
He believed that autism
and autistic traits are common
174
561584
3532
09:37
and always have been,
175
565116
1866
09:38
seeing aspects of this continuum
in familiar archetypes from pop culture
176
566982
5294
09:44
like the socially awkward scientist
177
572276
2336
09:46
and the absent-minded professor.
178
574612
2694
09:49
He went so far as to say,
179
577306
2113
09:51
it seems that for success
in science and art,
180
579419
3227
09:54
a dash of autism is essential.
181
582646
2946
09:58
Lorna and Judith realized that Kanner
had been as wrong about autism being rare
182
586292
4922
10:03
as he had been about parents causing it.
183
591214
2693
10:05
Over the next several years,
184
593907
2044
10:07
they quietly worked with
the American Psychiatric Association
185
595951
3413
10:11
to broaden the criteria for diagnosis
186
599364
2600
10:13
to reflect the diversity of what
they called "the autism spectrum."
187
601964
4017
10:17
In the late '80s and early 1990s,
188
605981
2578
10:20
their changes went into effect,
189
608559
2298
10:22
swapping out Kanner's narrow model
190
610857
2369
10:25
for Asperger's broad and inclusive one.
191
613226
3575
10:28
These changes weren't
happening in a vacuum.
192
616801
2671
10:31
By coincidence, as Lorna and Judith
worked behind the scenes
193
619472
3854
10:35
to reform the criteria,
194
623326
1834
10:37
people all over the world were seeing
an autistic adult for the first time.
195
625160
5016
10:42
Before "Rain Man" came out in 1988,
196
630176
3374
10:45
only a tiny, ingrown circle of experts
knew what autism looked like,
197
633550
4659
10:50
but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt
198
638209
4760
10:54
earned "Rain Man" four Academy Awards,
199
642969
3135
10:58
pediatricians, psychologists,
200
646104
2740
11:00
teachers and parents all over the world
knew what autism looked like.
201
648844
4690
11:05
Coincidentally, at the same time,
202
653534
2925
11:08
the first easy-to-use clinical tests
for diagnosing autism were introduced.
203
656459
5130
11:13
You no longer had to have a connection
to that tiny circle of experts
204
661939
4690
11:18
to get your child evaluated.
205
666629
2578
11:21
The combination of "Rain Man,"
206
669207
2113
11:23
the changes to the criteria,
and the introduction of these tests
207
671320
4179
11:27
created a network effect,
208
675499
2275
11:29
a perfect storm of autism awareness.
209
677774
3530
11:33
The number of diagnoses started to soar,
210
681304
3018
11:36
just as Lorna and Judith predicted,
indeed hoped, that it would,
211
684322
5668
11:41
enabling autistic people
and their families
212
689990
2116
11:44
to finally get the support
and services they deserved.
213
692106
3692
11:47
Then Andrew Wakefield came along
214
695798
2066
11:49
to blame the spike
in diagnoses on vaccines,
215
697864
3855
11:53
a simple, powerful,
216
701719
2113
11:55
and seductively believable story
217
703832
2786
11:58
that was as wrong as Kanner's theory
218
706618
2368
12:00
that autism was rare.
219
708986
2253
12:03
If the CDC's current estimate,
220
711239
3471
12:06
that one in 68 kids in America
are on the spectrum, is correct,
221
714710
4423
12:11
autistics are one of the largest
minority groups in the world.
222
719133
4207
12:15
In recent years, autistic people
have come together on the Internet
223
723340
3827
12:19
to reject the notion that they
are puzzles to be solved
224
727167
3645
12:22
by the next medical breakthrough,
225
730812
2183
12:24
coining the term "neurodiversity"
226
732995
2461
12:27
to celebrate the varieties
of human cognition.
227
735456
3288
12:31
One way to understand neurodiversity
228
739264
2391
12:33
is to think in terms
of human operating systems.
229
741655
3669
12:37
Just because a P.C. is not running Windows
doesn't mean that it's broken.
230
745324
4916
12:42
By autistic standards,
the normal human brain
231
750240
3629
12:45
is easily distractable,
232
753869
2020
12:47
obsessively social,
233
755889
1788
12:49
and suffers from a deficit
of attention to detail.
234
757677
3320
12:52
To be sure, autistic people
have a hard time
235
760997
2995
12:55
living in a world not built for them.
236
763992
2276
12:58
[Seventy] years later, we're still
catching up to Asperger,
237
766268
4252
13:02
who believed that the "cure"
for the most disabling aspects of autism
238
770520
4083
13:06
is to be found in understanding teachers,
239
774603
2926
13:09
accommodating employers,
240
777529
2136
13:11
supportive communities,
241
779665
1857
13:13
and parents who have faith
in their children's potential.
242
781522
3344
13:16
An autistic woman
named Zosia Zaks once said,
243
784866
3042
13:19
"We need all hands on deck
to right the ship of humanity."
244
787908
5303
13:25
As we sail into an uncertain future,
245
793211
2553
13:27
we need every form
of human intelligence on the planet
246
795764
3738
13:31
working together to tackle
the challenges that we face as a society.
247
799502
5967
13:37
We can't afford to waste a brain.
248
805469
2322
13:39
Thank you.
249
807791
2345
13:42
(Applause)
250
810136
4000

▲Back to top

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