Steve Silberman: The forgotten history of autism

Translator: Silvia González Reviewer: Serv. de Norm. Lingüística U. de Santiago de Compostela

Just after Christmas last year,

Despois do Nadal do ano pasado

132 kids in California got the measles

132 rapaces contraeron o sarampelo en California

by either visiting Disneyland

por ir a Disneylandia

or being exposed to someone who'd been there.

ou por exporse a alguén que estivera alí.

The virus then hopped the Canadian border,

Logo, o virus pasou a Canadá,

infecting more than 100 children in Quebec.

e infectou máis de cen nenos no Quebec.

One of the tragic things about this outbreak

Un dos aspectos tráxicos deste brote

is that measles, which can be fatal to a child with a weakened immune system,

é que o sarampelo, que pode ser mortal para un rapaz inmunodeprimido,

é unha das enfermidades máis fáciles de previr do mundo.

is one of the most easily preventable diseases in the world.

An effective vaccine against it

Existe unha vacina eficaz

has been available for more than half a century,

que leva dispoñible máis de medio século,

but many of the kids involved in the Disneyland outbreak

pero moitos dos nenos implicados no brote de Disneylandia

had not been vaccinated

non foran vacinados

because their parents were afraid

porque os seus pais tiñan medo

de algo presuntamente peor:

of something allegedly even worse:

autismo.

autism.

But wait -- wasn't the paper that sparked the controversy

Pero, acaso ese artigo, o que desatara a polémica

about autism and vaccines

sobre as vacinas e o autismo,

debunked, retracted,

non fora xa desacreditado, retirado

and branded a deliberate fraud

e tachado de fraude deliberado

by the British Medical Journal?

polo British Medical Journal?

Non saben todos os científicos expertos

Don't most science-savvy people

know that the theory that vaccines cause autism is B.S.?

que a teoría de que as vacinas provocan autismo é unha parvada?

I think most of you do,

Creo que a maioría de vós sabédelo,

but millions of parents worldwide

pero hai millóns de pais no mundo

continue to fear that vaccines put their kids at risk for autism.

que seguen a pensar que as vacinas expoñen os seus fillos ao autismo.

Why?

Por que?

Here's why.

Por isto.

This is a graph of autism prevalence estimates rising over time.

Este é un gráfico que mostra o aumento da prevalencia do autismo co tempo.

For most of the 20th century,

Durante case todo o século vinte

autism was considered an incredibly rare condition.

o autismo era considerado unha enfermidade extremadamente rara.

Os poucos psicólogos e pediatras que escoitaran falar dela

The few psychologists and pediatricians who'd even heard of it

figured they would get through their entire careers

pensaban que en toda a súa carreira

without seeing a single case.

non verían nin un só caso.

For decades, the prevalence estimates remained stable

Durante décadas, calculouse unha prevalencia estable do autismo

at just three or four children in 10,000.

de tres ou catro nenos por cada dez mil.

But then, in the 1990s,

Pero máis tarde, nos anos noventa,

the numbers started to skyrocket.

as cifras disparáronse.

Fundraising organizations like Autism Speaks

Organizacións recadadoras de fondos como Autism Speaks

routinely refer to autism as an epidemic,

falan a cotío da epidemia do autismo

as if you could catch it from another kid at Disneyland.

como se te puidese contaxiar un neno en Disneylandia.

So what's going on?

Pero entón, que está pasando?

If it isn't vaccines, what is it?

Se non son as vacinas, que é?

If you ask the folks down at the Centers for Disease Control in Atlanta

Se preguntas en Atlanta, no Centro de Control de Enfermidades,

que é o que está a pasar,

what's going on,

they tend to rely on phrases like "broadened diagnostic criteria"

adoitan empregar frases como: "criterios de diagnóstico máis amplos"

and "better case finding"

e "unha mellor detección"

para explicar este aumento dos casos.

to explain these rising numbers.

But that kind of language

Pero este tipo de linguaxe

doesn't do much to allay the fears of a young mother

non consegue acougar unha nai nova

who is searching her two-year-old's face for eye contact.

que intenta establecer contacto visual co seu fillo de dous anos.

If the diagnostic criteria had to be broadened,

Se era preciso ampliar os criterios de diagnóstico,

why were they so narrow in the first place?

por que eran tan reducidos antes?

Why were cases of autism so hard to find

Por que era tan difícil atopar casos de autismo

antes dos anos noventa?

before the 1990s?

Five years ago, I decided to try to uncover the answers to these questions.

Hai cinco anos, decidín buscar respostas para estas preguntas.

Descubrín que o que acontece

I learned that what happened

has less to do with the slow and cautious progress of science

ten menos que ver cos lentos e cautos avances científicos

ca co poder de sedución dunha boa narración.

than it does with the seductive power of storytelling.

For most of the 20th century,

Durante a maior parte do século vinte,

clinicians told one story

os médicos contaron un relato

about what autism is and how it was discovered,

sobre o autismo, que era e como se descubrira,

but that story turned out to be wrong,

pero resultou ser un relato errado,

and the consequences of it

e as súas consecuencias

are having a devastating impact on global public health.

teñen un impacto devastador na saúde pública mundial.

There was a second, more accurate story of autism

Había un segundo relato, máis acertado,

which had been lost and forgotten

que estaba perdido e esquecido

in obscure corners of the clinical literature.

nun recuncho escuro da bibliografía médica.

This second story tells us everything about how we got here

Este segundo relato explica como chegamos ata aquí

and where we need to go next.

e cara a onde temos que ir agora.

The first story starts with a child psychiatrist at Johns Hopkins Hospital

O primeiro relato comeza cun psiquiatra infantil do Hospital Johns Hopkins,

named Leo Kanner.

chamado Leo Kanner.

In 1943, Kanner published a paper

En 1943, Kanner publicou un artigo

describing 11 young patients who seemed to inhabit private worlds,

no que describía once pacientes novos que parecían habitar mundos privados,

ignoring the people around them,

e ignoraban a xente ao seu redor,

even their own parents.

mesmo a seus pais.

They could amuse themselves for hours

Podían entreterse sós durante horas

by flapping their hands in front of their faces,

batendo as mans diante da cara,

but they were panicked by little things

pero logo espantábanse por pequeneces,

like their favorite toy being moved from its usual place

como que lles movesen do sitio o seu xoguete favorito

without their knowledge.

sen llelo dicir antes.

Based on the patients who were brought to his clinic,

Baseándose nos pacientes que lle chegaban á súa consulta,

Kanner speculated that autism is very rare.

Kanner supuxo que o autismo era moi pouco frecuente.

By the 1950s, as the world's leading authority on the subject,

Nos anos cincuenta, xa como experto mundial na materia,

he declared that he had seen less than 150 true cases of his syndrome

declarou que non vira nin 150 casos verdadeiros da "súa" síndrome,

while fielding referrals from as far away as South Africa.

aínda que atendera pacientes derivados mesmo dende Suráfrica.

That's actually not surprising,

Isto non é tan sorprendente,

because Kanner's criteria for diagnosing autism

dado que os criterios de Kanner para o diagnóstico do autismo

eran extremadamente selectivos.

were incredibly selective.

For example, he discouraged giving the diagnosis to children who had seizures

Por exemplo, non recomendaba diagnosticar de autismo a nenos con convulsións,

but now we know that epilepsy is very common in autism.

pero agora sabemos que a epilepsia é moi común no autismo.

He once bragged that he had turned nine out of 10 kids

Unha vez presumiu de descartar nove de cada dez nenos

referred to his office as autistic by other clinicians

que chegaban á súa consulta declarados autistas por outros médicos,

without giving them an autism diagnosis.

sen diagnosticarlles autismo.

Kanner was a smart guy,

Kanner era un tipo listo,

but a number of his theories didn't pan out.

pero algunhas das súas teorías non eran certas.

Clasificou o autismo como unha forma de psicose infantil

He classified autism as a form of infantile psychosis

caused by cold and unaffectionate parents.

causada por pais fríos e pouco agarimosos.

These children, he said,

Estes nenos, segundo el dicía,

had been kept neatly in a refrigerator that didn't defrost.

foran coidadosamente mantidos nun frigorífico que non desconxelaba.

At the same time, however,

Porén, ó mesmo tempo,

Kanner noticed that some of his young patients

Kanner decatouse de que algúns dos seus pacientes

had special abilities that clustered in certain areas

tiñan habilidades especiais concentradas en áreas concretas,

like music, math and memory.

como música, matemáticas e a memoria.

One boy in his clinic

Un dos rapaces da súa clínica

could distinguish between 18 symphonies before he turned two.

sabía distinguir 18 sinfonías antes de facer dous anos.

When his mother put on one of his favorite records,

Cando a súa nai puña un dos seus discos favoritos,

he would correctly declare, "Beethoven!"

o neno anunciaba correctamente: "Beethoven!"

But Kanner took a dim view of these abilities,

Pero Kanner vía con malos ollos estas habilidades,

claiming that the kids were just regurgitating things

e dicía que os nenos só repetían mecanicamente

they'd heard their pompous parents say,

o que lles oían dicir aos seus pedantes pais,

desperate to earn their approval.

desesperados por gañar a súa aprobación.

As a result, autism became a source of shame and stigma for families,

Así, o autismo era para as familias fonte de vergonza e estigma,

and two generations of autistic children

e dúas xeracións de rapaces autistas

were shipped off to institutions for their own good,

foron enviados a psiquiátricos polo seu ben,

becoming invisible to the world at large.

e volvéronse invisibles para o mundo.

É estraño que non fora ata os anos setenta

Amazingly, it wasn't until the 1970s

that researchers began to test Kanner's theory that autism was rare.

cando se tratou de contrastar a teoría de que o autismo era pouco común.

Lorna Wing was a cognitive psychologist in London

Lorna Wing era unha psicóloga cognitiva en Londres

que pensaba que a teoría de Kanner dos pais frigorífico

who thought that Kanner's theory of refrigerator parenting

were "bloody stupid," as she told me.

era, tal como me dixo, "unha estupidez".

She and her husband John were warm and affectionate people,

Lorna e o seu marido John eran persoas cálidas e afectuosas,

e tiveran unha filla autista profunda que se chamaba Susie.

and they had a profoundly autistic daughter named Susie.

Lorna e John sabían o difícil que era criar unha nena coma Susie,

Lorna and John knew how hard it was to raise a child like Susie

without support services,

sen servizos de apoio,

special education,

educación especial

and the other resources that are out of reach without a diagnosis.

e tódolos demais recursos ós que non podes acceder sen un diagnóstico.

To make the case to the National Health Service

Para xustificar ante a Seguridade Social

that more resources were needed for autistic children and their families,

que se precisaban máis recursos para os nenos autistas e as súas familias,

Lorna and her colleague Judith Gould

Lorna e a súa colega Judith Gould

decided to do something that should have been done 30 years earlier.

decidiron facer algo que xa debía levar 30 anos feito.

They undertook a study of autism prevalence in the general population.

Fixeron un estudo da prevalencia do autismo na poboación xeral.

Patearon as rúas de Camberwell, un barrio nas aforas de Londres,

They pounded the pavement in a London suburb called Camberwell

to try to find autistic children in the community.

para buscar nenos autistas na veciñanza.

Descubriron que o modelo de Kanner era demasiado limitado

What they saw made clear that Kanner's model was way too narrow,

while the reality of autism was much more colorful and diverse.

para a realidade dun autismo que é moito máis diverso e variado.

Some kids couldn't talk at all,

Algúns nenos non sabían dicir palabra,

while others waxed on at length about their fascination with astrophysics,

mentres que outros falaban sen parar fascinados pola astrofísica,

dinosaurs or the genealogy of royalty.

os dinosauros ou a xenealoxía da realeza.

In other words, these children didn't fit into nice, neat boxes,

Noutras palabras, estes rapaces non podían clasificarse en compartimentos estancos,

como explicou Judith,

as Judith put it,

and they saw lots of them,

e elas viran moitos destes rapaces,

way more than Kanner's monolithic model would have predicted.

moitos máis dos que Kanner predixera co seu ríxido modelo.

At first, they were at a loss to make sense of their data.

Ao principio, non sabían darlles sentido aos datos que conseguiran.

How had no one noticed these children before?

Como ninguén lles prestara atención antes a estes rapaces?

Pero entón Lorna atopou unha referencia a un artigo

But then Lorna came upon a reference to a paper that had been published

publicado en alemán no 1944,

in German in 1944,

the year after Kanner's paper,

un ano despois do de Kanner,

and then forgotten,

e logo esquecido,

buried with the ashes of a terrible time

soterrado coas cinzas dun tempo terrible

that no one wanted to remember or think about.

que ninguén quería recordar.

Kanner knew about this competing paper,

Kanner sabía dese artigo rival,

pero tivo moito coidado de non mencionalo no seu traballo.

but scrupulously avoided mentioning it in his own work.

It had never even been translated into English,

Nunca se traducira ó inglés,

pero, por sorte, o marido de Lorna sabía alemán,

but luckily, Lorna's husband spoke German,

and he translated it for her.

e traduciuno para ela.

The paper offered an alternate story of autism.

Este traballo ofrecía unha historia alternativa do autismo.

Its author was a man named Hans Asperger,

O autor era un home chamado Hans Asperger,

who ran a combination clinic and residential school

quen dirixía unha clínica con internado

in Vienna in the 1930s.

en Viena nos anos 30.

Asperger's ideas about teaching children with learning differences

As ideas de Asperger sobre a educación de nenos con diferenzas de aprendizaxe

were progressive even by contemporary standards.

eran progresistas mesmo para hoxe en día.

Mornings at his clinic began with exercise classes set to music,

As mañás na súa clínica comezaban con exercicios con música,

and the children put on plays on Sunday afternoons.

e os rapaces representaban obras de teatro os domingos pola tarde.

Instead of blaming parents for causing autism,

En lugar de culpar os pais de causar o autismo,

Asperger framed it as a lifelong, polygenetic disability

Asperger catalogouno como unha discapacidade polixénica permanente

that requires compassionate forms of support and accommodations

que precisaba dun aloxamento e apoio compasivos

en tódalas etapas da vida.

over the course of one's whole life.

En lugar de tratar os nenos na súa clínica como pacientes,

Rather than treating the kids in his clinic like patients,

Asperger called them his little professors,

Asperger chamáballes os seus pequenos profesores,

and enlisted their help in developing methods of education

e serviuse da súa axuda para desenvolver métodos de educación

that were particularly suited to them.

que foran específicos para eles.

Crucially, Asperger viewed autism as a diverse continuum

O máis importante era que Asperger vía o autismo como un contínuum variado

que comprende unha incrible gama de talentos e discapacidades.

that spans an astonishing range of giftedness and disability.

He believed that autism and autistic traits are common

El cría que o autismo e os trazos autistas son habituais

e que sempre o foran,

and always have been,

seeing aspects of this continuum in familiar archetypes from pop culture

xa que temos mostras deste contínuum en arquetipos comúns da cultura popular,

like the socially awkward scientist

como o científico torpe na vida social,

and the absent-minded professor.

ou o profesor distraído.

He went so far as to say,

Asperger foi máis alá ata dicir

it seems that for success in science and art,

que parece que para ter éxito nas ciencias e nas artes,

a dash of autism is essential.

unha pinga de autismo é esencial.

Lorna and Judith realized that Kanner had been as wrong about autism being rare

Lorna e Judith déronse conta de que Kanner errara ao dicir que o autismo era raro,

as he had been about parents causing it.

igual ca cando dixera que o causaban os pais.

Over the next several years,

Durante os anos seguintes,

they quietly worked with the American Psychiatric Association

traballaron discretamente coa Asociación Americana de Psiquiatría

to broaden the criteria for diagnosis

para ampliar os criterios de diagnóstico

to reflect the diversity of what they called "the autism spectrum."

e reflectir a diversidade do que chamaron "espectro autista".

In the late '80s and early 1990s,

A finais dos 80 e principios dos 90,

their changes went into effect,

os seus cambios produciron efectos,

swapping out Kanner's narrow model

mudando o modelo limitado de Kanner

for Asperger's broad and inclusive one.

polo amplo e inclusivo modelo de Asperger.

These changes weren't happening in a vacuum.

Estes cambios non sucedían no baleiro.

By coincidence, as Lorna and Judith worked behind the scenes

Casualmente, mentres Lorna e Judith traballaban entre bastidores

to reform the criteria,

para modificar os criterios,

o mundo vía un adulto autista por primeira vez.

people all over the world were seeing an autistic adult for the first time.

Antes da estrea de "Rain Man" en 1988,

Before "Rain Man" came out in 1988,

only a tiny, ingrown circle of experts knew what autism looked like,

só un círculo moi limitado de expertos sabía en que consistía o autismo,

but after Dustin Hoffman's unforgettable performance as Raymond Babbitt

pero logo de que a inesquecible actuación de Dustin Hoffman como Raymond Babbitt

earned "Rain Man" four Academy Awards,

acadara para "Rain Man" catro Óscars da Academia,

pediatras, psicólogos,

pediatricians, psychologists,

teachers and parents all over the world knew what autism looked like.

profesores e pais de todo o mundo coñeceron o autismo.

Coincidentally, at the same time,

De casualidade, tamén coincidiu

the first easy-to-use clinical tests for diagnosing autism were introduced.

coa aparición dos primeiros test sinxelos para o diagnóstico do autismo.

You no longer had to have a connection to that tiny circle of experts

Xa non había que estar relacionado con ese minúsculo grupo de expertos

to get your child evaluated.

para que avaliaran o teu fillo.

The combination of "Rain Man,"

A combinación de "Rain Man"

the changes to the criteria, and the introduction of these tests

cos cambios nos criterios e a aparición destes tests

created a network effect,

creou unha reacción en cadea,

a perfect storm of autism awareness.

a tormenta perfecta da concienciación sobre o autismo.

The number of diagnoses started to soar,

O número de diagnósticos comezou a dispararse,

just as Lorna and Judith predicted, indeed hoped, that it would,

xusto como Lorna e Judith predixeran, ou esperaban que sucedese,

enabling autistic people and their families

e posibilitou que autistas e familias

recibiran o apoio e os servizos que merecían.

to finally get the support and services they deserved.

Then Andrew Wakefield came along

Entón apareceu Andrew Wakefield

to blame the spike in diagnoses on vaccines,

e culpou as vacinas do pico nos diagnósticos.

a simple, powerful,

Una historia simple,

and seductively believable story

poderosa, sedutora e crible

that was as wrong as Kanner's theory

tan errada como a teoría de Kanner

that autism was rare.

do autismo pouco común.

If the CDC's current estimate,

Se os cálculos son correctos

that one in 68 kids in America are on the spectrum, is correct,

e un de cada 68 nenos en Estados Unidos están dentro do espectro autista,

as persoas autistas constitúen unha das principais minorías do mundo.

autistics are one of the largest minority groups in the world.

In recent years, autistic people have come together on the Internet

Nos últimos anos, estableceron unha comunidade en Internet

para rexeitar a idea de que son un crebacabezas que será resolto

to reject the notion that they are puzzles to be solved

by the next medical breakthrough,

polo próximo avance médico,

coining the term "neurodiversity"

e acuñaron o termo "neurodiversidade"

to celebrate the varieties of human cognition.

para celebrar a pluralidade cognitiva do ser humano.

One way to understand neurodiversity

Un xeito de entender a neurodiversidade

is to think in terms of human operating systems.

é pensar en termos de sistemas operativos humanos.

Just because a P.C. is not running Windows doesn't mean that it's broken.

Que un ordenador non funcione con Windows non significa que estea estragado.

Segundo o estándar autista, un cerebro humano normal

By autistic standards, the normal human brain

is easily distractable,

distráese con facilidade,

obsessively social,

é obsesivamente social

and suffers from a deficit of attention to detail.

e sofre dun déficit de atención aos detalles.

To be sure, autistic people have a hard time

Está claro que resulta difícil para as persoas autistas

living in a world not built for them.

vivir nun mundo que non se deseñou para eles.

[Seventy] years later, we're still catching up to Asperger,

Agora, 70 anos máis tarde, aínda imos por detrás de Asperger,

who believed that the "cure" for the most disabling aspects of autism

que cría que a "cura" para a maioría das discapacidades do autismo

is to be found in understanding teachers,

eran os profesores comprensivos,

accommodating employers,

os xefes con capacidade de adaptación,

supportive communities,

as comunidades que prestan apoio

and parents who have faith in their children's potential.

e os pais que cren no potencial dos seus fillos.

An autistic [man] named Zosia Zaks once said,

Unha muller autista, Zosia Zaks dixo:

"We need all hands on deck to right the ship of humanity."

"Todas as mans son necesarias para endereitar o barco da humanidade."

As we sail into an uncertain future,

Mentres navegamos cara a un futuro incerto,

we need every form of human intelligence on the planet

necesitamos tódalas formas de intelixencia humana do planeta

working together to tackle the challenges that we face as a society.

traballando xuntas para encarar os desafíos da nosa sociedade.

We can't afford to waste a brain.

Non podemos desaproveitar ningún cerebro.

Thank you.

Grazas.

(Aplausos)

(Applause)