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.
Odmah nakon Božića prošle godine 132 djece u Kaliforniji dobilo je ospice ili zato što su posjetili Disneyland ili zato što su bili izloženi nekome tko je bio ondje. Virus je zatim prešao kanadsku granicu, zarazivši više od stotinu djece u pokrajini Quebec. Ono što je u toj epidemiji tragično jest to što su ospice, koje za dijete oslabljenog imuniteta mogu biti smrtonosne, bolest koju je u svijetu vrlo jednostavno spriječiti. Učinkovito cjepivo protiv ospica dostupno je već više od 50 godina, no mnogo djece uključeno u epidemiju u Disneylandu nije bilo cijepljeno jer su se njihovi roditelji bojali nečega što je navodno još gore: autizma.
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.
No nisu li članak koji je izazvao polemike o autizmu i cjepivima razotkrili, porekli i proglasili namjernom prijevarom u Britanskom medicinskom časopisu? Zar većina stručnjaka ne zna da je teorija da cjepiva uzrokuju autizam besmislena? Mislim da većina vas zna, no milijuni se roditelja diljem svijeta i dalje boje da cjepiva njihovu djecu podvrgavaju riziku od autizma.
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.
Zašto? Objasnit ću vam zašto. Grafikon prikazuje procjenu učestalosti autizma koja s vremenom raste. Većinu 20. stoljeća autizam se smatrao iznimno rijetkom bolešću. Rijetki psiholozi i pedijatri koji su uopće čuli za to smatrali su kako tijekom cijele svoje karijere neće naići ni na jedan slučaj autizma. Desetljećima se procjena učestalosti zadržala na troje ili četvero djece na 10 000. Međutim, tijekom 1990-ih, brojke su vrtoglavo počele rasti. Organizacije za prikupljanje novca poput "Autism Speaks" obično o autizmu govore kao o epidemiji, kao nešto čime biste se mogli zaraziti preko drugog djeteta u Disneylandu.
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?
Što se događa? Ako se ne radi o cjepivima, o čemu se onda radi? Upitate li ljude iz centara za nadzor bolesti iz Atlante što se događa, reći će vam nešto poput: "prošireni dijagnostički kriteriji" i "bolje pronalaženje oboljelih" kako bi objasnili porast oboljelih. No, takav jezik ne pomaže puno ustrašenoj mladoj majci koja pokušava uspostaviti kontakt očima sa svojom dvogodišnjom kćeri. Ako se dijagnostički kriterij proširio, zašto je uopće bio tako uzak? Zašto je bilo tako teško pronaći slučajeve autizma prije 1990-ih?
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.
Prije pet godina odlučio sam pronaći odgovore na ta pitanja. Saznao sam da ono što se dogodilo nema toliko veze sa sporim i opreznim napretkom znanosti koliko sa zavodljivom moći pričanja priča. Većinu 20. stoljeća liječnici su pričali priču o tome što je autizam i kako su ga otkrili, ali ta se priča pokazala pogrešnom i njezine posljedice imaju razarajući učinak na globalno javno zdravstvo. Postojala je i druga, točnija priča o autizmu koja je izgubljena i zaboravljena u skrivenim kutovima liječničke literature. Ta druga priča govori nam sve o tome kako smo ovdje došli i gdje tek trebamo poći.
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.
Prva priča započinje u bolnici Johns Hopkins s dječjim psihijatrom Leom Kannerom. Kanner je 1943. objavio članak u kojem opisuje 11 mladih pacijenata koji su živjeli u vlastitim svjetovima i ignorirali ljude oko sebe, pa čak i vlastite roditelje. Mogli su satima zabavljati sami sebe mašući rukama ispred lica, ali uspaničarili bi se zbog sitnica poput premještanja omiljene im igračke s uobičajenog mjesta bez njihova znanja. Na temelju pacijenata dovedenih u tu kliniku, Kanner je pretpostavio da je autizam iznimno rijedak. Do 1950-ih, kao najveći svjetski autoritet na tom području, izjavio je da je vidio manje od 150 pravih slučajeva "njegova sindroma" proučavajući osobe čak i iz Južne Afrike za koje se sumnjalo da su autistične. To zapravo ne iznenađuje jer je Kannerov kriterij za dijagnoziranje autizma bio iznimno selektivan. Npr. nije preporučivao postavljanje dijagnoze djeci koja su patila od napadaja iako sada znamo da je epilepsija česta kod autizma. Hvalio se kako je poslao kući devet od desetero djece upućene mu od strane drugih liječnika pod sumnjom bolovanja od autizma bez postavljanja dijagnoze autizma.
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 je bio pametan čovjek, no mnoge su njegove teorije propale. Klasificirao je autizam kao oblik infantilne psihoze koju uzrokuju hladni i nebrižni roditelji. Izjavio je da su takva djeca uredno spremljena u zamrzivač koji nije imao funkciju odmrzavanja. No, ujedno je Kanner primijetio da neki od njegovih mladih pacijenata imaju posebne sposobnosti na određenim područjima poput glazbe, matematike i pamćenja. Jedan dječak u njegovoj klinici do druge godine života mogao je raspoznati 18 različitih simfonija. Kad bi majka stavila jednu od najdražih mu ploča, točno bi uskliknuo: "Beethoven!" No, Kanner nije prihvaćao te sposobnosti, već je smatrao da ta djeca samo ponavljaju ono što su čula od svojih pompoznih roditelja u očajničkoj čežnji za njihovim odobravanjem. Posljedično, autizam je za obitelji postao izvor srama i stigme i dvije generacije autistične djece poslane su u institucije za vlastito dobro, time postajući nevidljive cijelom svijetu.
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,
Začudo, tek su 1970-ih istraživači počeli propitivati Kannerovu teoriju o neučestalosti autizma. Lorna Wing, kognitivna psihologinja iz Londona, smatrala je Kannerovu teoriju o zamrzivačkom stilu roditeljstva, kako mi je rekla, "prokleto glupom". Ona i njezin muž John bili su topli i brižni roditelji iznimno autistične djevojčice Susie. Lorna i John znali su koliko je teško odgajati dijete poput Susie bez usluga podrške, posebne edukacije i drugih resursa koji su nedostupni bez dijagnoze. Kako bi Nacionalnoj zdravstvenoj službi dokazali da je više resursa potrebno za autističnu djecu i njihove obitelji,
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 i njezina kolegica Judith Gould odlučile su se na nešto što se trebalo napraviti prije trideset godina. Provele su istraživanje o učestalosti autizma širom opće populacije. Pješačile su Camberwellom, londonskim predgrađem, u potrazi za autističnom djecom u tom naselju. Opaženo im je razbistrilo ograničenost Kannerova modela, a autističku stvarnost učinilo raznobojnijom i raznolikijom. Neka djeca uopće nisu mogla govoriti dok su druga nadugačko i naširoko pričala o svojoj fasciniranosti astrofizikom, dinosaurima ili rodoslovlju kraljevske obitelji. Drugim riječima, ta djeca nisu pripadala lijepim, točno određenim kategorijama, kako ih je Judith nazvala, a viđali su ih puno, puno više nego što je Kannerov monolitni model previđao.
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.
Isprva nisu uspijevale pronaći smisao u prikupljenim podatcima. Kako tu djecu nitko dosad nije primijetio? No, onda je Lorna naišla na referencu na članak objavljen 1944. u Njemačkoj, godinu dana nakon Kannerova članka i koji je zatim pao u zaborav, zakopan uz pepeo užasnog vremena kojega se nitko nije htio niti prisjećati niti razmišljati o njemu. Kanner je znao za taj suprotstavljeni članak, ali svjesno ga je odbio spomenuti u vlastitom radu. Taj članak nikad nije preveden na engleski, no srećom, Lornin muž govorio je njemački, pa joj ga je preveo.
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.
Članak je ponudio drugačiju priču o autizmu. Autor članka bio je Hans Asperger, voditelj kombinirane klinike i škole s učeničkim domom u Beču 1930-ih. Aspergerove ideje o učenju djece sa specifičnostima u učenju bile su progresivne čak i za suvremene standarde. Jutra u njegovoj klinici započinjala su vježbom uz glazbu, a djeca su nedjeljom popodne organizirala predstave. Umjesto da je okrivljavao roditelje za autizam, Asperger je autizam definirao kao poligenetički invaliditet koji zahtijeva suosjećajne oblike podrške i prilagođavanja tijekom cijelog životnog vijeka. Umjesto da je djecu u klinici tretirao kao pacijente, on ih je nazivao svojim malim profesorima te tražio njihovu pomoć u razvijanju metoda u obrazovanju posebno prilagođenih njima. Ključno je to što je Asperger autizam promatrao na kontinuumu raznolikosti koji obuhvaća nevjerojatan raspon od darovitosti do nesposobnosti. Vjerovao je da su autizam i značajke autizma uobičajene i da su oduvijek bile takve jer su aspekti tog kontinuuma vidljivi u poznatim arhetipovima popularne kulture poput društveno neprilagođenog znanstvenika i duhom odsutnog profesora. Čak je rekao da je za uspjeh u znanosti i umjetnosti nužna doza autizma.
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 i Judith shvatile su da je Kanner krivo pretpostavio da je autizam rijedak, kao što je i krivo pretpostavio da su mu uzrok roditelji. Tijekom sljedećih nekoliko godina u tišini su surađivale s Američkom udrugom za psihijatriju kako bi proširile kriterij za dijagnozu koji bi odražavao raznolikost onoga što je nazvao "autističnim spektrom". Kasnih 80-ih i ranih 90-ih te su promjene stupile na snagu zamjenjujući Kannerov uzak model Aspergerovim širokim i uključujućim modelom.
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.
Te se promjene nisu događale u vakuumu. Sasvim slučajno, dok su Lorna i Judith u tajnosti radile na reformi kriterija, ljudi diljem svijeta po prvi su put gledali odraslog autista. Prije nego što je 1988. izašao "Kišni čovjek", samo je malen krug stručnjaka znao kako izgleda autizam. No, nakon što je Hoffmanova neponovljiva interpretacija Raymonda Babbitta "Kišnom čovjeku" zaradila četiri Oscara, pedijatri, psiholozi, učitelji i roditelji diljem svijeta znali su kako izgleda autizam.
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.
Igrom slučaja, u to isto vrijeme pojavili su se prvi testovi za dijagnozu autizma jednostavni za korištenje. Više vam nije trebala veza do malog kruga stručnjaka kako bi vaše dijete dobilo procjenu.
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.
Kombinacija "Kišnog čovjeka", promjena u kriteriju i pojava tih testova stvorili su mrežni učinak, savršenu oluju svijesti o autizmu. Broj dijagnoza vinuo se u nebesa, baš kao što su Lorna i Judith predvidjele, točnije baš kao što su se nadale da hoće, što je autistima i obiteljima autista pomoglo dobiti zasluženu podršku i usluge.
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.
Zatim se pojavio Andrew Wakefield i za taj je porast okrivio cjepiva. Bila je to jednostavna, moćna i zamamno vjerojatna priča pogrešna gotovo kao i Kannerova teorija o neučestalosti autizma.
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.
Ako je točna trenutna pretpostavka CDC-a da je svako 68. dijete u Americi na ovom spektru, autisti su jedna od najvećih manjinskih grupa u svijetu. Nedavnih godina autisti su se ujedinili na internetu kako bi opovrgnuli vjerovanje da su oni tek zagonetke koje treba riješiti sljedeće otkriće u medicini te pritom stvarajući pojam "neuroraznolikosti" kako bi slavili razlike u ljudskoj kogniciji.
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.
Jedan od načina razumjevanja neuroraznolikosti uključuje razmišljanje u kontekstu ljudskih operativnih sustava. To što računalo nema Windowse, ne znači da to računalo ne valja. Prema autističkim standardima normalom ljudskom mozgu lako je odvući pažnju, pretjerano je društven te pati od manjka pažnje za detalje. Autistima je teško živjeti u svijetu nenamijenjenom za njih. Sedamdeset godina kasnije još uvijek tek sustižemo Aspergera koji je vjerovao da se "lijek" za najograničavajuće aspekte autizma može pronaći u učiteljima prepunim razumijevanja, prilagodljivim poslodavcima, podržavajućim zajednicama i roditeljima koji vjeruju u potencijal svoje djece.
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.
Autistični muškarac Zosia Zaks jednom je prilikom izjavio: "Treba nam pomoć svih da ispravimo put na kojem se našlo čovječanstvo." Dok plovimo prema nesigurnoj budućnosti, svaki oblik ljudske inteligencije na planetu treba zajedničkim naporima svladati izazove s kojima se kao društvo suočavamo. Ne možemo si priuštiti da izgubimo ijedan mozak.
Thank you.
Hvala.
(Applause)
(Pljesak)