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