TED2015
Steve Silberman: The forgotten history of autism
Steve Silberman: A historia esquecida do autismo
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Hai varias décadas, poucos pediatras escoitaran falar do autismo. En 1975, calculábase que 1 de cada 5000 nenos era autista. Hoxe, 1 de cada 68 está dentro do espectro autista. Que causou este aumento repentino? Steve Silberman sinala unha "tormenta perfecta da concienciación sobre o autismo": un par de doutoras que ofrecen unha visión máis comprensiva, un momento inesperado na cultura popular e un novo test clínico. Pero para comprendelo de verdade, temos que nos remontar ata o doutor austríaco Hans Asperger, quen en 1944 publicou un artigo pioneiro. Ao quedar soterrado no tempo, o autismo permaneceu como o grande incomprendido. (Esta charla forma parte dunha das sesións TED2015 organizadas pola Pop-Up Magazine: popupmagazine.com ou @popupmag en 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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Despois do Nadal do ano pasado
00:15
132 kids in California got the measles
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132 rapaces contraeron
o sarampelo en California
o sarampelo en California
00:19
by either visiting Disneyland
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por ir a Disneylandia
00:21
or being exposed to someone
who'd been there.
who'd been there.
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ou por exporse a alguén que estivera alí.
00:24
The virus then hopped the Canadian border,
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Logo, o virus pasou a Canadá,
00:27
infecting more than
100 children in Quebec.
100 children in Quebec.
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e infectou máis de cen nenos no Quebec.
00:30
One of the tragic things
about this outbreak
about this outbreak
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Un dos aspectos tráxicos deste brote
00:33
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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é que o sarampelo, que pode ser mortal
para un rapaz inmunodeprimido,
para un rapaz inmunodeprimido,
é unha das enfermidades
máis fáciles de previr do mundo.
máis fáciles de previr do mundo.
00:39
is one of the most easily
preventable diseases in the world.
preventable diseases in the world.
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Existe unha vacina eficaz
00:43
An effective vaccine against it
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00:45
has been available for more
than half a century,
than half a century,
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que leva dispoñible máis de medio século,
00:48
but many of the kids involved
in the Disneyland outbreak
in the Disneyland outbreak
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pero moitos dos nenos
implicados no brote de Disneylandia
implicados no brote de Disneylandia
non foran vacinados
00:51
had not been vaccinated
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00:53
because their parents were afraid
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porque os seus pais tiñan medo
00:56
of something allegedly even worse:
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de algo presuntamente peor:
00:59
autism.
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autismo.
Pero, acaso ese artigo,
o que desatara a polémica
o que desatara a polémica
01:00
But wait -- wasn't the paper
that sparked the controversy
that sparked the controversy
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01:04
about autism and vaccines
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sobre as vacinas e o autismo,
01:06
debunked, retracted,
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non fora xa desacreditado, retirado
01:08
and branded a deliberate fraud
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e tachado de fraude deliberado
polo British Medical Journal?
01:11
by the British Medical Journal?
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01:13
Don't most science-savvy people
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Non saben todos os científicos expertos
01:15
know that the theory
that vaccines cause autism is B.S.?
that vaccines cause autism is B.S.?
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que a teoría de que as vacinas
provocan autismo é unha parvada?
provocan autismo é unha parvada?
01:19
I think most of you do,
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Creo que a maioría de vós sabédelo,
01:21
but millions of parents worldwide
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pero hai millóns de pais no mundo
01:23
continue to fear that vaccines
put their kids at risk for autism.
put their kids at risk for autism.
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que seguen a pensar que as vacinas
expoñen os seus fillos ao autismo.
expoñen os seus fillos ao autismo.
01:28
Why?
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Por que?
Por isto.
01:30
Here's why.
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01:32
This is a graph of autism
prevalence estimates rising over time.
prevalence estimates rising over time.
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Este é un gráfico que mostra o aumento
da prevalencia do autismo co tempo.
da prevalencia do autismo co tempo.
Durante case todo o século vinte
01:37
For most of the 20th century,
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01:39
autism was considered
an incredibly rare condition.
an incredibly rare condition.
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o autismo era considerado
unha enfermidade extremadamente rara.
unha enfermidade extremadamente rara.
Os poucos psicólogos e pediatras
que escoitaran falar dela
que escoitaran falar dela
01:43
The few psychologists and pediatricians
who'd even heard of it
who'd even heard of it
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01:46
figured they would get through
their entire careers
their entire careers
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pensaban que en toda a súa carreira
01:49
without seeing a single case.
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non verían nin un só caso.
01:52
For decades, the prevalence estimates
remained stable
remained stable
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Durante décadas, calculouse
unha prevalencia estable do autismo
unha prevalencia estable do autismo
01:55
at just three or four children in 10,000.
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de tres ou catro nenos por cada dez mil.
01:58
But then, in the 1990s,
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Pero máis tarde, nos anos noventa,
02:00
the numbers started to skyrocket.
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as cifras disparáronse.
02:03
Fundraising organizations
like Autism Speaks
like Autism Speaks
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Organizacións recadadoras de fondos
como Autism Speaks
como Autism Speaks
02:06
routinely refer to autism as an epidemic,
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falan a cotío da epidemia do autismo
02:09
as if you could catch it
from another kid at Disneyland.
from another kid at Disneyland.
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como se te puidese contaxiar
un neno en Disneylandia.
un neno en Disneylandia.
02:13
So what's going on?
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Pero entón, que está pasando?
02:14
If it isn't vaccines, what is it?
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Se non son as vacinas, que é?
02:18
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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Se preguntas en Atlanta,
no Centro de Control de Enfermidades,
no Centro de Control de Enfermidades,
que é o que está a pasar,
02:22
what's going on,
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adoitan empregar frases como:
"criterios de diagnóstico máis amplos"
"criterios de diagnóstico máis amplos"
02:23
they tend to rely on phrases like
"broadened diagnostic criteria"
"broadened diagnostic criteria"
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02:28
and "better case finding"
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e "unha mellor detección"
02:30
to explain these rising numbers.
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para explicar este aumento dos casos.
02:32
But that kind of language
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Pero este tipo de linguaxe
02:34
doesn't do much to allay
the fears of a young mother
the fears of a young mother
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non consegue acougar unha nai nova
02:37
who is searching her
two-year-old's face for eye contact.
two-year-old's face for eye contact.
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que intenta establecer contacto visual
co seu fillo de dous anos.
co seu fillo de dous anos.
02:42
If the diagnostic criteria
had to be broadened,
had to be broadened,
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Se era preciso ampliar
os criterios de diagnóstico,
os criterios de diagnóstico,
02:45
why were they so narrow
in the first place?
in the first place?
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por que eran tan reducidos antes?
02:48
Why were cases of autism
so hard to find
so hard to find
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Por que era tan difícil
atopar casos de autismo
atopar casos de autismo
02:51
before the 1990s?
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antes dos anos noventa?
02:53
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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Hai cinco anos, decidín buscar
respostas para estas preguntas.
respostas para estas preguntas.
02:59
I learned that what happened
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Descubrín que o que acontece
03:01
has less to do with the slow and cautious
progress of science
progress of science
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ten menos que ver
cos lentos e cautos avances científicos
cos lentos e cautos avances científicos
03:05
than it does with the seductive
power of storytelling.
power of storytelling.
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ca co poder de sedución
dunha boa narración.
dunha boa narración.
03:08
For most of the 20th century,
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Durante a maior parte do século vinte,
03:10
clinicians told one story
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os médicos contaron un relato
03:13
about what autism is
and how it was discovered,
and how it was discovered,
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sobre o autismo,
que era e como se descubrira,
que era e como se descubrira,
03:16
but that story turned out to be wrong,
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pero resultou ser un relato errado,
03:19
and the consequences of it
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e as súas consecuencias
03:21
are having a devastating impact
on global public health.
on global public health.
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teñen un impacto devastador
na saúde pública mundial.
na saúde pública mundial.
03:25
There was a second,
more accurate story of autism
more accurate story of autism
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Había un segundo relato, máis acertado,
03:28
which had been lost and forgotten
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que estaba perdido e esquecido
03:31
in obscure corners
of the clinical literature.
of the clinical literature.
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nun recuncho escuro da bibliografía médica.
03:34
This second story tells us everything
about how we got here
about how we got here
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Este segundo relato explica
como chegamos ata aquí
como chegamos ata aquí
e cara a onde temos que ir agora.
03:38
and where we need to go next.
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03:41
The first story starts with a child
psychiatrist at Johns Hopkins Hospital
psychiatrist at Johns Hopkins Hospital
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O primeiro relato comeza cun psiquiatra
infantil do Hospital Johns Hopkins,
infantil do Hospital Johns Hopkins,
03:45
named Leo Kanner.
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chamado Leo Kanner.
03:47
In 1943, Kanner published a paper
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En 1943, Kanner publicou un artigo
no que describía once pacientes novos
que parecían habitar mundos privados,
que parecían habitar mundos privados,
03:51
describing 11 young patients
who seemed to inhabit private worlds,
who seemed to inhabit private worlds,
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03:56
ignoring the people around them,
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e ignoraban a xente ao seu redor,
03:58
even their own parents.
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mesmo a seus pais.
04:00
They could amuse themselves for hours
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Podían entreterse sós durante horas
batendo as mans diante da cara,
04:02
by flapping their hands
in front of their faces,
in front of their faces,
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pero logo espantábanse por pequeneces,
04:05
but they were panicked by little things
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04:07
like their favorite toy
being moved from its usual place
being moved from its usual place
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como que lles movesen do sitio
o seu xoguete favorito
o seu xoguete favorito
04:10
without their knowledge.
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sen llelo dicir antes.
Baseándose nos pacientes
que lle chegaban á súa consulta,
que lle chegaban á súa consulta,
04:12
Based on the patients
who were brought to his clinic,
who were brought to his clinic,
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04:15
Kanner speculated
that autism is very rare.
that autism is very rare.
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Kanner supuxo que o autismo
era moi pouco frecuente.
era moi pouco frecuente.
Nos anos cincuenta,
xa como experto mundial na materia,
xa como experto mundial na materia,
04:19
By the 1950s, as the world's
leading authority on the subject,
leading authority on the subject,
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04:23
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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declarou que non vira nin 150 casos
verdadeiros da "súa" síndrome,
verdadeiros da "súa" síndrome,
04:29
while fielding referrals from
as far away as South Africa.
as far away as South Africa.
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aínda que atendera pacientes derivados
mesmo dende Suráfrica.
mesmo dende Suráfrica.
Isto non é tan sorprendente,
04:33
That's actually not surprising,
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04:35
because Kanner's criteria
for diagnosing autism
for diagnosing autism
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dado que os criterios de Kanner
para o diagnóstico do autismo
para o diagnóstico do autismo
eran extremadamente selectivos.
04:39
were incredibly selective.
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04:41
For example, he discouraged giving
the diagnosis to children who had seizures
the diagnosis to children who had seizures
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Por exemplo, non recomendaba diagnosticar
de autismo a nenos con convulsións,
de autismo a nenos con convulsións,
04:46
but now we know that epilepsy
is very common in autism.
is very common in autism.
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pero agora sabemos que a epilepsia
é moi común no autismo.
é moi común no autismo.
Unha vez presumiu de descartar
nove de cada dez nenos
nove de cada dez nenos
04:50
He once bragged that he had turned
nine out of 10 kids
nine out of 10 kids
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04:53
referred to his office as autistic
by other clinicians
by other clinicians
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que chegaban á súa consulta
declarados autistas por outros médicos,
declarados autistas por outros médicos,
04:57
without giving them an autism diagnosis.
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sen diagnosticarlles autismo.
05:00
Kanner was a smart guy,
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Kanner era un tipo listo,
pero algunhas das súas teorías
non eran certas.
non eran certas.
05:02
but a number of his theories
didn't pan out.
didn't pan out.
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05:05
He classified autism as a form
of infantile psychosis
of infantile psychosis
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Clasificou o autismo
como unha forma de psicose infantil
como unha forma de psicose infantil
causada por pais fríos e pouco agarimosos.
05:08
caused by cold and unaffectionate parents.
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Estes nenos, segundo el dicía,
05:12
These children, he said,
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foran coidadosamente mantidos
nun frigorífico que non desconxelaba.
nun frigorífico que non desconxelaba.
05:14
had been kept neatly
in a refrigerator that didn't defrost.
in a refrigerator that didn't defrost.
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05:19
At the same time, however,
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Porén, ó mesmo tempo,
05:21
Kanner noticed that some
of his young patients
of his young patients
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Kanner decatouse de que algúns dos seus pacientes
05:24
had special abilities
that clustered in certain areas
that clustered in certain areas
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tiñan habilidades especiais
concentradas en áreas concretas,
concentradas en áreas concretas,
05:27
like music, math and memory.
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como música, matemáticas e a memoria.
05:30
One boy in his clinic
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Un dos rapaces da súa clínica
05:32
could distinguish between 18 symphonies
before he turned two.
before he turned two.
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sabía distinguir 18 sinfonías
antes de facer dous anos.
antes de facer dous anos.
05:37
When his mother put on
one of his favorite records,
one of his favorite records,
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Cando a súa nai puña
un dos seus discos favoritos,
un dos seus discos favoritos,
05:40
he would correctly declare,
"Beethoven!"
"Beethoven!"
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o neno anunciaba correctamente:
"Beethoven!"
"Beethoven!"
05:43
But Kanner took a dim view
of these abilities,
of these abilities,
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Pero Kanner vía con malos ollos
estas habilidades,
estas habilidades,
05:46
claiming that the kids
were just regurgitating things
were just regurgitating things
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e dicía que os nenos
só repetían mecanicamente
só repetían mecanicamente
05:50
they'd heard their pompous parents say,
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o que lles oían dicir
aos seus pedantes pais,
aos seus pedantes pais,
05:52
desperate to earn their approval.
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desesperados por gañar a súa aprobación.
05:55
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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Así, o autismo era para as familias
fonte de vergonza e estigma,
fonte de vergonza e estigma,
e dúas xeracións de rapaces autistas
06:00
and two generations of autistic children
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06:03
were shipped off to institutions
for their own good,
for their own good,
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foron enviados a psiquiátricos polo seu ben,
e volvéronse invisibles para o mundo.
06:06
becoming invisible to the world at large.
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É estraño que non fora ata os anos setenta
06:10
Amazingly, it wasn't until the 1970s
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cando se tratou de contrastar a teoría
de que o autismo era pouco común.
de que o autismo era pouco común.
06:14
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 era
unha psicóloga cognitiva en Londres
unha psicóloga cognitiva en Londres
06:19
Lorna Wing was a cognitive
psychologist in London
psychologist in London
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que pensaba que a teoría de Kanner
dos pais frigorífico
dos pais frigorífico
06:23
who thought that Kanner's theory
of refrigerator parenting
of refrigerator parenting
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06:26
were "bloody stupid," as she told me.
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era, tal como me dixo, "unha estupidez".
06:29
She and her husband John were warm
and affectionate people,
and affectionate people,
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Lorna e o seu marido John
eran persoas cálidas e afectuosas,
eran persoas cálidas e afectuosas,
e tiveran unha filla autista profunda
que se chamaba Susie.
que se chamaba Susie.
06:33
and they had a profoundly
autistic daughter named Susie.
autistic daughter named Susie.
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06:37
Lorna and John knew how hard it was
to raise a child like Susie
to raise a child like Susie
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Lorna e John sabían o difícil que era
criar unha nena coma Susie,
criar unha nena coma Susie,
06:41
without support services,
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sen servizos de apoio,
06:43
special education,
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educación especial
06:45
and the other resources that are
out of reach without a diagnosis.
out of reach without a diagnosis.
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e tódolos demais recursos ós que non podes
acceder sen un diagnóstico.
acceder sen un diagnóstico.
06:49
To make the case
to the National Health Service
to the National Health Service
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Para xustificar ante a Seguridade Social
06:52
that more resources were needed
for autistic children and their families,
for autistic children and their families,
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que se precisaban máis recursos
para os nenos autistas e as súas familias,
para os nenos autistas e as súas familias,
06:57
Lorna and her colleague Judith Gould
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Lorna e a súa colega Judith Gould
06:59
decided to do something that should
have been done 30 years earlier.
have been done 30 years earlier.
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decidiron facer algo
que xa debía levar 30 anos feito.
que xa debía levar 30 anos feito.
07:04
They undertook a study of autism
prevalence in the general population.
prevalence in the general population.
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Fixeron un estudo da prevalencia
do autismo na poboación xeral.
do autismo na poboación xeral.
07:09
They pounded the pavement
in a London suburb called Camberwell
in a London suburb called Camberwell
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Patearon as rúas de Camberwell,
un barrio nas aforas de Londres,
un barrio nas aforas de Londres,
07:13
to try to find autistic children
in the community.
in the community.
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para buscar nenos autistas na veciñanza.
07:17
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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Descubriron que o modelo de Kanner
era demasiado limitado
era demasiado limitado
07:21
while the reality of autism
was much more colorful and diverse.
was much more colorful and diverse.
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para a realidade dun autismo
que é moito máis diverso e variado.
que é moito máis diverso e variado.
Algúns nenos non sabían dicir palabra,
07:26
Some kids couldn't talk at all,
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07:28
while others waxed on at length
about their fascination with astrophysics,
about their fascination with astrophysics,
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mentres que outros falaban sen parar
fascinados pola astrofísica,
fascinados pola astrofísica,
os dinosauros ou a xenealoxía da realeza.
07:33
dinosaurs or the genealogy of royalty.
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Noutras palabras, estes rapaces
non podían clasificarse en compartimentos estancos,
non podían clasificarse en compartimentos estancos,
07:37
In other words, these children
didn't fit into nice, neat boxes,
didn't fit into nice, neat boxes,
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07:42
as Judith put it,
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como explicou Judith,
07:43
and they saw lots of them,
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e elas viran moitos destes rapaces,
07:45
way more than Kanner's monolithic model
would have predicted.
would have predicted.
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moitos máis dos que Kanner predixera
co seu ríxido modelo.
co seu ríxido modelo.
07:49
At first, they were at a loss
to make sense of their data.
to make sense of their data.
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Ao principio, non sabían darlles sentido
aos datos que conseguiran.
aos datos que conseguiran.
Como ninguén lles prestara atención
antes a estes rapaces?
antes a estes rapaces?
07:53
How had no one noticed
these children before?
these children before?
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Pero entón Lorna atopou
unha referencia a un artigo
unha referencia a un artigo
07:56
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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publicado en alemán no 1944,
07:59
in German in 1944,
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un ano despois do de Kanner,
08:02
the year after Kanner's paper,
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08:04
and then forgotten,
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e logo esquecido,
08:06
buried with the ashes of a terrible time
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soterrado coas cinzas dun tempo terrible
08:09
that no one wanted to remember
or think about.
or think about.
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que ninguén quería recordar.
08:12
Kanner knew about this competing paper,
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Kanner sabía dese artigo rival,
pero tivo moito coidado
de non mencionalo no seu traballo.
de non mencionalo no seu traballo.
08:15
but scrupulously avoided
mentioning it in his own work.
mentioning it in his own work.
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Nunca se traducira ó inglés,
08:19
It had never even
been translated into English,
been translated into English,
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pero, por sorte,
o marido de Lorna sabía alemán,
o marido de Lorna sabía alemán,
08:22
but luckily, Lorna's husband spoke German,
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08:25
and he translated it for her.
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e traduciuno para ela.
08:27
The paper offered
an alternate story of autism.
an alternate story of autism.
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Este traballo ofrecía
unha historia alternativa do autismo.
unha historia alternativa do autismo.
08:31
Its author was a man named Hans Asperger,
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O autor era un home chamado Hans Asperger,
08:34
who ran a combination clinic
and residential school
and residential school
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quen dirixía unha clínica con internado
08:37
in Vienna in the 1930s.
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en Viena nos anos 30.
08:40
Asperger's ideas about teaching children
with learning differences
with learning differences
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As ideas de Asperger sobre a educación
de nenos con diferenzas de aprendizaxe
de nenos con diferenzas de aprendizaxe
08:44
were progressive even
by contemporary standards.
by contemporary standards.
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3134
eran progresistas mesmo para hoxe en día.
08:47
Mornings at his clinic began
with exercise classes set to music,
with exercise classes set to music,
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As mañás na súa clínica
comezaban con exercicios con música,
comezaban con exercicios con música,
e os rapaces representaban
obras de teatro os domingos pola tarde.
obras de teatro os domingos pola tarde.
08:51
and the children put on plays
on Sunday afternoons.
on Sunday afternoons.
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08:55
Instead of blaming parents
for causing autism,
for causing autism,
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En lugar de culpar os pais
de causar o autismo,
de causar o autismo,
08:58
Asperger framed it as a lifelong,
polygenetic disability
polygenetic disability
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Asperger catalogouno como
unha discapacidade polixénica permanente
unha discapacidade polixénica permanente
09:03
that requires compassionate forms
of support and accommodations
of support and accommodations
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que precisaba dun aloxamento
e apoio compasivos
e apoio compasivos
09:07
over the course of one's whole life.
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3407
en tódalas etapas da vida.
En lugar de tratar os nenos
na súa clínica como pacientes,
na súa clínica como pacientes,
09:10
Rather than treating the kids
in his clinic like patients,
in his clinic like patients,
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09:13
Asperger called them
his little professors,
his little professors,
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3065
Asperger chamáballes
os seus pequenos profesores,
os seus pequenos profesores,
09:16
and enlisted their help in developing
methods of education
methods of education
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e serviuse da súa axuda
para desenvolver métodos de educación
para desenvolver métodos de educación
que foran específicos para eles.
09:20
that were particularly suited to them.
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09:22
Crucially, Asperger viewed autism
as a diverse continuum
as a diverse continuum
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O máis importante era que Asperger
vía o autismo como un contínuum variado
vía o autismo como un contínuum variado
que comprende unha incrible gama
de talentos e discapacidades.
de talentos e discapacidades.
09:28
that spans an astonishing range
of giftedness and disability.
of giftedness and disability.
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El cría que o autismo
e os trazos autistas son habituais
e os trazos autistas son habituais
09:33
He believed that autism
and autistic traits are common
and autistic traits are common
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3532
09:37
and always have been,
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e que sempre o foran,
09:38
seeing aspects of this continuum
in familiar archetypes from pop culture
in familiar archetypes from pop culture
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5294
xa que temos mostras deste contínuum
en arquetipos comúns da cultura popular,
en arquetipos comúns da cultura popular,
09:44
like the socially awkward scientist
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2336
como o científico torpe na vida social,
09:46
and the absent-minded professor.
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574612
2694
ou o profesor distraído.
Asperger foi máis alá ata dicir
09:49
He went so far as to say,
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2113
que parece que para ter éxito
nas ciencias e nas artes,
nas ciencias e nas artes,
09:51
it seems that for success
in science and art,
in science and art,
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579419
3227
unha pinga de autismo é esencial.
09:54
a dash of autism is essential.
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2946
09:58
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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Lorna e Judith déronse conta de que Kanner
errara ao dicir que o autismo era raro,
errara ao dicir que o autismo era raro,
10:03
as he had been about parents causing it.
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591214
2693
igual ca cando dixera
que o causaban os pais.
que o causaban os pais.
10:05
Over the next several years,
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2044
Durante os anos seguintes,
10:07
they quietly worked with
the American Psychiatric Association
the American Psychiatric Association
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595951
3413
traballaron discretamente coa
Asociación Americana de Psiquiatría
Asociación Americana de Psiquiatría
10:11
to broaden the criteria for diagnosis
186
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2600
para ampliar os criterios de diagnóstico
10:13
to reflect the diversity of what
they called "the autism spectrum."
they called "the autism spectrum."
187
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4017
e reflectir a diversidade
do que chamaron "espectro autista".
do que chamaron "espectro autista".
10:17
In the late '80s and early 1990s,
188
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2578
A finais dos 80 e principios dos 90,
10:20
their changes went into effect,
189
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2298
os seus cambios produciron efectos,
10:22
swapping out Kanner's narrow model
190
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2369
mudando o modelo limitado de Kanner
10:25
for Asperger's broad and inclusive one.
191
613226
3575
polo amplo e inclusivo modelo de Asperger.
Estes cambios non sucedían no baleiro.
10:28
These changes weren't
happening in a vacuum.
happening in a vacuum.
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2671
10:31
By coincidence, as Lorna and Judith
worked behind the scenes
worked behind the scenes
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3854
Casualmente, mentres Lorna e Judith
traballaban entre bastidores
traballaban entre bastidores
10:35
to reform the criteria,
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623326
1834
para modificar os criterios,
o mundo vía un adulto autista
por primeira vez.
por primeira vez.
10:37
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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5016
10:42
Before "Rain Man" came out in 1988,
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3374
Antes da estrea de "Rain Man" en 1988,
só un círculo moi limitado de expertos
sabía en que consistía o autismo,
sabía en que consistía o autismo,
10:45
only a tiny, ingrown circle of experts
knew what autism looked like,
knew what autism looked like,
197
633550
4659
10:50
but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt
performance as Raymond Babbitt
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638209
4760
pero logo de que a inesquecible actuación
de Dustin Hoffman como Raymond Babbitt
de Dustin Hoffman como Raymond Babbitt
10:54
earned "Rain Man" four Academy Awards,
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3135
acadara para "Rain Man"
catro Óscars da Academia,
catro Óscars da Academia,
10:58
pediatricians, psychologists,
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646104
2740
pediatras, psicólogos,
11:00
teachers and parents all over the world
knew what autism looked like.
knew what autism looked like.
201
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4690
profesores e pais de todo o mundo
coñeceron o autismo.
coñeceron o autismo.
11:05
Coincidentally, at the same time,
202
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2925
De casualidade, tamén coincidiu
11:08
the first easy-to-use clinical tests
for diagnosing autism were introduced.
for diagnosing autism were introduced.
203
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5130
coa aparición dos primeiros test sinxelos
para o diagnóstico do autismo.
para o diagnóstico do autismo.
Xa non había que estar relacionado
con ese minúsculo grupo de expertos
con ese minúsculo grupo de expertos
11:13
You no longer had to have a connection
to that tiny circle of experts
to that tiny circle of experts
204
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4690
para que avaliaran o teu fillo.
11:18
to get your child evaluated.
205
666629
2578
11:21
The combination of "Rain Man,"
206
669207
2113
A combinación de "Rain Man"
11:23
the changes to the criteria,
and the introduction of these tests
and the introduction of these tests
207
671320
4179
cos cambios nos criterios
e a aparición destes tests
e a aparición destes tests
creou unha reacción en cadea,
11:27
created a network effect,
208
675499
2275
11:29
a perfect storm of autism awareness.
209
677774
3530
a tormenta perfecta
da concienciación sobre o autismo.
da concienciación sobre o autismo.
11:33
The number of diagnoses started to soar,
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3018
O número de diagnósticos
comezou a dispararse,
comezou a dispararse,
11:36
just as Lorna and Judith predicted,
indeed hoped, that it would,
indeed hoped, that it would,
211
684322
5668
xusto como Lorna e Judith predixeran,
ou esperaban que sucedese,
ou esperaban que sucedese,
e posibilitou que autistas e familias
11:41
enabling autistic people
and their families
and their families
212
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2116
11:44
to finally get the support
and services they deserved.
and services they deserved.
213
692106
3692
recibiran o apoio
e os servizos que merecían.
e os servizos que merecían.
Entón apareceu Andrew Wakefield
11:47
Then Andrew Wakefield came along
214
695798
2066
11:49
to blame the spike
in diagnoses on vaccines,
in diagnoses on vaccines,
215
697864
3855
e culpou as vacinas
do pico nos diagnósticos.
do pico nos diagnósticos.
11:53
a simple, powerful,
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2113
Una historia simple,
11:55
and seductively believable story
217
703832
2786
poderosa, sedutora e crible
11:58
that was as wrong as Kanner's theory
218
706618
2368
tan errada como a teoría de Kanner
12:00
that autism was rare.
219
708986
2253
do autismo pouco común.
12:03
If the CDC's current estimate,
220
711239
3471
Se os cálculos son correctos
e un de cada 68 nenos en Estados Unidos
están dentro do espectro autista,
están dentro do espectro autista,
12:06
that one in 68 kids in America
are on the spectrum, is correct,
are on the spectrum, is correct,
221
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4423
12:11
autistics are one of the largest
minority groups in the world.
minority groups in the world.
222
719133
4207
as persoas autistas constitúen
unha das principais minorías do mundo.
unha das principais minorías do mundo.
Nos últimos anos,
estableceron unha comunidade en Internet
estableceron unha comunidade en Internet
12:15
In recent years, autistic people
have come together on the Internet
have come together on the Internet
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723340
3827
12:19
to reject the notion that they
are puzzles to be solved
are puzzles to be solved
224
727167
3645
para rexeitar a idea de que son
un crebacabezas que será resolto
un crebacabezas que será resolto
12:22
by the next medical breakthrough,
225
730812
2183
polo próximo avance médico,
12:24
coining the term "neurodiversity"
226
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2461
e acuñaron o termo "neurodiversidade"
12:27
to celebrate the varieties
of human cognition.
of human cognition.
227
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3288
para celebrar a pluralidade
cognitiva do ser humano.
cognitiva do ser humano.
Un xeito de entender a neurodiversidade
12:31
One way to understand neurodiversity
228
739264
2391
12:33
is to think in terms
of human operating systems.
of human operating systems.
229
741655
3669
é pensar en termos
de sistemas operativos humanos.
de sistemas operativos humanos.
Que un ordenador non funcione con Windows
non significa que estea estragado.
non significa que estea estragado.
12:37
Just because a P.C. is not running Windows
doesn't mean that it's broken.
doesn't mean that it's broken.
230
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4916
Segundo o estándar autista,
un cerebro humano normal
un cerebro humano normal
12:42
By autistic standards,
the normal human brain
the normal human brain
231
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3629
12:45
is easily distractable,
232
753869
2020
distráese con facilidade,
12:47
obsessively social,
233
755889
1788
é obsesivamente social
12:49
and suffers from a deficit
of attention to detail.
of attention to detail.
234
757677
3320
e sofre dun déficit
de atención aos detalles.
de atención aos detalles.
Está claro que resulta difícil
para as persoas autistas
para as persoas autistas
12:52
To be sure, autistic people
have a hard time
have a hard time
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2995
12:55
living in a world not built for them.
236
763992
2276
vivir nun mundo
que non se deseñou para eles.
que non se deseñou para eles.
Agora, 70 anos máis tarde,
aínda imos por detrás de Asperger,
aínda imos por detrás de Asperger,
12:58
[Seventy] years later, we're still
catching up to Asperger,
catching up to Asperger,
237
766268
4252
que cría que a "cura" para a maioría
das discapacidades do autismo
das discapacidades do autismo
13:02
who believed that the "cure"
for the most disabling aspects of autism
for the most disabling aspects of autism
238
770520
4083
eran os profesores comprensivos,
13:06
is to be found in understanding teachers,
239
774603
2926
13:09
accommodating employers,
240
777529
2136
os xefes con capacidade de adaptación,
13:11
supportive communities,
241
779665
1857
as comunidades que prestan apoio
e os pais que cren
no potencial dos seus fillos.
no potencial dos seus fillos.
13:13
and parents who have faith
in their children's potential.
in their children's potential.
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3344
Unha muller autista, Zosia Zaks dixo:
13:16
An autistic woman
named Zosia Zaks once said,
named Zosia Zaks once said,
243
784866
3042
13:19
"We need all hands on deck
to right the ship of humanity."
to right the ship of humanity."
244
787908
5303
"Todas as mans son necesarias
para endereitar o barco da humanidade."
para endereitar o barco da humanidade."
13:25
As we sail into an uncertain future,
245
793211
2553
Mentres navegamos
cara a un futuro incerto,
cara a un futuro incerto,
13:27
we need every form
of human intelligence on the planet
of human intelligence on the planet
246
795764
3738
necesitamos tódalas formas
de intelixencia humana do planeta
de intelixencia humana do planeta
13:31
working together to tackle
the challenges that we face as a society.
the challenges that we face as a society.
247
799502
5967
traballando xuntas para encarar
os desafíos da nosa sociedade.
os desafíos da nosa sociedade.
13:37
We can't afford to waste a brain.
248
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2322
Non podemos desaproveitar ningún cerebro.
13:39
Thank you.
249
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2345
Grazas.
(Aplausos)
13:42
(Applause)
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4000
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