Steve Silberman: The forgotten history of autism

Prevoditelj: Anja Kolobarić Recezent: Ivan Stamenković

Just after Christmas last year,

Odmah nakon Božića prošle godine

132 kids in California got the measles

132 djece u Kaliforniji dobilo je ospice

by either visiting Disneyland

ili zato što su posjetili Disneyland

or being exposed to someone who'd been there.

ili zato što su bili izloženi nekome tko je bio ondje.

The virus then hopped the Canadian border,

Virus je zatim prešao kanadsku granicu,

infecting more than 100 children in Quebec.

zarazivši više od stotinu djece u pokrajini Quebec.

One of the tragic things about this outbreak

Ono što je u toj epidemiji tragično jest to

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

što su ospice, koje za dijete oslabljenog imuniteta mogu biti smrtonosne,

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

bolest koju je u svijetu vrlo jednostavno spriječiti.

An effective vaccine against it

Učinkovito cjepivo protiv ospica

has been available for more than half a century,

dostupno je već više od 50 godina,

but many of the kids involved in the Disneyland outbreak

no mnogo djece uključeno u epidemiju u Disneylandu

had not been vaccinated

nije bilo cijepljeno

because their parents were afraid

jer su se njihovi roditelji bojali

of something allegedly even worse:

nečega što je navodno još gore:

autism.

autizma.

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

No nisu li članak koji je izazvao polemike

about autism and vaccines

o autizmu i cjepivima

debunked, retracted,

razotkrili, porekli

and branded a deliberate fraud

i proglasili namjernom prijevarom

by the British Medical Journal?

u Britanskom medicinskom časopisu?

Don't most science-savvy people

Zar većina stručnjaka ne zna

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

da je teorija da cjepiva uzrokuju autizam besmislena?

I think most of you do,

Mislim da većina vas zna,

but millions of parents worldwide

no milijuni se roditelja diljem svijeta

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

i dalje boje da cjepiva njihovu djecu podvrgavaju riziku od autizma.

Why?

Zašto?

Here's why.

Objasnit ću vam zašto.

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

Grafikon prikazuje procjenu učestalosti autizma koja s vremenom raste.

For most of the 20th century,

Većinu 20. stoljeća

autism was considered an incredibly rare condition.

autizam se smatrao iznimno rijetkom bolešću.

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

Rijetki psiholozi i pedijatri koji su uopće čuli za to

figured they would get through their entire careers

smatrali su kako tijekom cijele svoje karijere

without seeing a single case.

neće naići ni na jedan slučaj autizma.

For decades, the prevalence estimates remained stable

Desetljećima se procjena učestalosti zadržala

at just three or four children in 10,000.

na troje ili četvero djece na 10 000.

But then, in the 1990s,

Međutim, tijekom 1990-ih,

the numbers started to skyrocket.

brojke su vrtoglavo počele rasti.

Fundraising organizations like Autism Speaks

Organizacije za prikupljanje novca poput "Autism Speaks"

routinely refer to autism as an epidemic,

obično o autizmu govore kao o epidemiji,

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

kao nešto čime biste se mogli zaraziti preko drugog djeteta u Disneylandu.

So what's going on?

Što se događa?

If it isn't vaccines, what is it?

Ako se ne radi o cjepivima, o čemu se onda radi?

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

Upitate li ljude iz centara za nadzor bolesti iz Atlante

what's going on,

što se događa,

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

reći će vam nešto poput: "prošireni dijagnostički kriteriji"

and "better case finding"

i "bolje pronalaženje oboljelih"

to explain these rising numbers.

kako bi objasnili porast oboljelih.

But that kind of language

No, takav jezik

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

ne pomaže puno ustrašenoj mladoj majci

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

koja pokušava uspostaviti kontakt očima sa svojom dvogodišnjom kćeri.

If the diagnostic criteria had to be broadened,

Ako se dijagnostički kriterij proširio,

why were they so narrow in the first place?

zašto je uopće bio tako uzak?

Why were cases of autism so hard to find

Zašto je bilo tako teško pronaći slučajeve autizma

before the 1990s?

prije 1990-ih?

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

Prije pet godina odlučio sam pronaći odgovore na ta pitanja.

I learned that what happened

Saznao sam da ono što se dogodilo

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

nema toliko veze sa sporim i opreznim napretkom znanosti

than it does with the seductive power of storytelling.

koliko sa zavodljivom moći pričanja priča.

For most of the 20th century,

Većinu 20. stoljeća

clinicians told one story

liječnici su pričali priču

about what autism is and how it was discovered,

o tome što je autizam i kako su ga otkrili,

but that story turned out to be wrong,

ali ta se priča pokazala pogrešnom

and the consequences of it

i njezine posljedice

are having a devastating impact on global public health.

imaju razarajući učinak na globalno javno zdravstvo.

There was a second, more accurate story of autism

Postojala je i druga, točnija priča o autizmu

which had been lost and forgotten

koja je izgubljena i zaboravljena

in obscure corners of the clinical literature.

u skrivenim kutovima liječničke literature.

This second story tells us everything about how we got here

Ta druga priča govori nam sve o tome kako smo ovdje došli

and where we need to go next.

i gdje tek trebamo poći.

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

Prva priča započinje u bolnici Johns Hopkins s dječjim psihijatrom

named Leo Kanner.

Leom Kannerom.

In 1943, Kanner published a paper

Kanner je 1943. objavio članak

describing 11 young patients who seemed to inhabit private worlds,

u kojem opisuje 11 mladih pacijenata koji su živjeli u vlastitim svjetovima

ignoring the people around them,

i ignorirali ljude oko sebe,

even their own parents.

pa čak i vlastite roditelje.

They could amuse themselves for hours

Mogli su satima zabavljati sami sebe

by flapping their hands in front of their faces,

mašući rukama ispred lica,

but they were panicked by little things

ali uspaničarili bi se zbog sitnica

like their favorite toy being moved from its usual place

poput premještanja omiljene im igračke s uobičajenog mjesta

without their knowledge.

bez njihova znanja.

Based on the patients who were brought to his clinic,

Na temelju pacijenata dovedenih u tu kliniku,

Kanner speculated that autism is very rare.

Kanner je pretpostavio da je autizam iznimno rijedak.

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

Do 1950-ih, kao najveći svjetski autoritet na tom području,

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

izjavio je da je vidio manje od 150 pravih slučajeva "njegova sindroma"

while fielding referrals from as far away as South Africa.

proučavajući osobe čak i iz Južne Afrike za koje se sumnjalo da su autistične.

That's actually not surprising,

To zapravo ne iznenađuje

because Kanner's criteria for diagnosing autism

jer je Kannerov kriterij za dijagnoziranje autizma

were incredibly selective.

bio iznimno selektivan.

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

Npr. nije preporučivao postavljanje dijagnoze djeci koja su patila od napadaja

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

iako sada znamo da je epilepsija česta kod autizma.

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

Hvalio se kako je poslao kući devet od desetero djece

referred to his office as autistic by other clinicians

upućene mu od strane drugih liječnika pod sumnjom bolovanja od autizma

without giving them an autism diagnosis.

bez postavljanja dijagnoze autizma.

Kanner was a smart guy,

Kanner je bio pametan čovjek,

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

no mnoge su njegove teorije propale.

He classified autism as a form of infantile psychosis

Klasificirao je autizam kao oblik infantilne psihoze

caused by cold and unaffectionate parents.

koju uzrokuju hladni i nebrižni roditelji.

These children, he said,

Izjavio je da su takva djeca

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

uredno spremljena u zamrzivač koji nije imao funkciju odmrzavanja.

At the same time, however,

No, ujedno je

Kanner noticed that some of his young patients

Kanner primijetio da neki od njegovih mladih pacijenata

had special abilities that clustered in certain areas

imaju posebne sposobnosti na određenim područjima

like music, math and memory.

poput glazbe, matematike i pamćenja.

One boy in his clinic

Jedan dječak u njegovoj klinici

could distinguish between 18 symphonies before he turned two.

do druge godine života mogao je raspoznati 18 različitih simfonija.

When his mother put on one of his favorite records,

Kad bi majka stavila jednu od najdražih mu ploča,

he would correctly declare, "Beethoven!"

točno bi uskliknuo: "Beethoven!"

But Kanner took a dim view of these abilities,

No, Kanner nije prihvaćao te sposobnosti,

claiming that the kids were just regurgitating things

već je smatrao da ta djeca samo ponavljaju

they'd heard their pompous parents say,

ono što su čula od svojih pompoznih roditelja

desperate to earn their approval.

u očajničkoj čežnji za njihovim odobravanjem.

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

Posljedično, autizam je za obitelji postao izvor srama i stigme

and two generations of autistic children

i dvije generacije autistične djece

were shipped off to institutions for their own good,

poslane su u institucije za vlastito dobro,

becoming invisible to the world at large.

time postajući nevidljive cijelom svijetu.

Amazingly, it wasn't until the 1970s

Začudo, tek su 1970-ih

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

istraživači počeli propitivati Kannerovu teoriju o neučestalosti autizma.

Lorna Wing was a cognitive psychologist in London

Lorna Wing, kognitivna psihologinja iz Londona,

who thought that Kanner's theory of refrigerator parenting

smatrala je Kannerovu teoriju o zamrzivačkom stilu roditeljstva,

were "bloody stupid," as she told me.

kako mi je rekla, "prokleto glupom".

She and her husband John were warm and affectionate people,

Ona i njezin muž John bili su topli i brižni roditelji

and they had a profoundly autistic daughter named Susie.

iznimno autistične djevojčice Susie.

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

Lorna i John znali su koliko je teško odgajati dijete poput Susie

without support services,

bez usluga podrške,

special education,

posebne edukacije

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

i drugih resursa koji su nedostupni bez dijagnoze.

To make the case to the National Health Service

Kako bi Nacionalnoj zdravstvenoj službi dokazali

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

da je više resursa potrebno za autističnu djecu i njihove obitelji,

Lorna and her colleague Judith Gould

Lorna i njezina kolegica Judith Gould

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

odlučile su se na nešto što se trebalo napraviti prije trideset godina.

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

Provele su istraživanje o učestalosti autizma širom opće populacije.

They pounded the pavement in a London suburb called Camberwell

Pješačile su Camberwellom, londonskim predgrađem,

to try to find autistic children in the community.

u potrazi za autističnom djecom u tom naselju.

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

Opaženo im je razbistrilo ograničenost Kannerova modela,

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

a autističku stvarnost učinilo raznobojnijom i raznolikijom.

Some kids couldn't talk at all,

Neka djeca uopće nisu mogla govoriti

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

dok su druga nadugačko i naširoko pričala o svojoj fasciniranosti astrofizikom,

dinosaurs or the genealogy of royalty.

dinosaurima ili rodoslovlju kraljevske obitelji.

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

Drugim riječima, ta djeca nisu pripadala lijepim, točno određenim kategorijama,

as Judith put it,

kako ih je Judith nazvala,

and they saw lots of them,

a viđali su ih puno,

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

puno više nego što je Kannerov monolitni model previđao.

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

Isprva nisu uspijevale pronaći smisao u prikupljenim podatcima.

How had no one noticed these children before?

Kako tu djecu nitko dosad nije primijetio?

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

No, onda je Lorna naišla na referencu na članak objavljen

in German in 1944,

1944. u Njemačkoj,

the year after Kanner's paper,

godinu dana nakon Kannerova članka

and then forgotten,

i koji je zatim pao u zaborav,

buried with the ashes of a terrible time

zakopan uz pepeo užasnog vremena

that no one wanted to remember or think about.

kojega se nitko nije htio niti prisjećati niti razmišljati o njemu.

Kanner knew about this competing paper,

Kanner je znao za taj suprotstavljeni članak,

but scrupulously avoided mentioning it in his own work.

ali svjesno ga je odbio spomenuti u vlastitom radu.

It had never even been translated into English,

Taj članak nikad nije preveden na engleski,

but luckily, Lorna's husband spoke German,

no srećom, Lornin muž govorio je njemački,

and he translated it for her.

pa joj ga je preveo.

The paper offered an alternate story of autism.

Članak je ponudio drugačiju priču o autizmu.

Its author was a man named Hans Asperger,

Autor članka bio je Hans Asperger,

who ran a combination clinic and residential school

voditelj kombinirane klinike i škole s učeničkim domom

in Vienna in the 1930s.

u Beču 1930-ih.

Asperger's ideas about teaching children with learning differences

Aspergerove ideje o učenju djece sa specifičnostima u učenju

were progressive even by contemporary standards.

bile su progresivne čak i za suvremene standarde.

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

Jutra u njegovoj klinici započinjala su vježbom uz glazbu,

and the children put on plays on Sunday afternoons.

a djeca su nedjeljom popodne organizirala predstave.

Instead of blaming parents for causing autism,

Umjesto da je okrivljavao roditelje za autizam,

Asperger framed it as a lifelong, polygenetic disability

Asperger je autizam definirao kao poligenetički invaliditet

that requires compassionate forms of support and accommodations

koji zahtijeva suosjećajne oblike podrške i prilagođavanja

over the course of one's whole life.

tijekom cijelog životnog vijeka.

Rather than treating the kids in his clinic like patients,

Umjesto da je djecu u klinici tretirao kao pacijente,

Asperger called them his little professors,

on ih je nazivao svojim malim profesorima

and enlisted their help in developing methods of education

te tražio njihovu pomoć u razvijanju metoda u obrazovanju

that were particularly suited to them.

posebno prilagođenih njima.

Crucially, Asperger viewed autism as a diverse continuum

Ključno je to što je Asperger autizam promatrao na kontinuumu raznolikosti

that spans an astonishing range of giftedness and disability.

koji obuhvaća nevjerojatan raspon od darovitosti do nesposobnosti.

He believed that autism and autistic traits are common

Vjerovao je da su autizam i značajke autizma uobičajene

and always have been,

i da su oduvijek bile takve

seeing aspects of this continuum in familiar archetypes from pop culture

jer su aspekti tog kontinuuma vidljivi u poznatim arhetipovima popularne kulture

like the socially awkward scientist

poput društveno neprilagođenog znanstvenika

and the absent-minded professor.

i duhom odsutnog profesora.

He went so far as to say,

Čak je rekao

it seems that for success in science and art,

da je za uspjeh u znanosti i umjetnosti

a dash of autism is essential.

nužna doza autizma.

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

Lorna i Judith shvatile su da je Kanner krivo pretpostavio da je autizam rijedak,

as he had been about parents causing it.

kao što je i krivo pretpostavio da su mu uzrok roditelji.

Over the next several years,

Tijekom sljedećih nekoliko godina

they quietly worked with the American Psychiatric Association

u tišini su surađivale s Američkom udrugom za psihijatriju

to broaden the criteria for diagnosis

kako bi proširile kriterij za dijagnozu

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

koji bi odražavao raznolikost onoga što je nazvao "autističnim spektrom".

In the late '80s and early 1990s,

Kasnih 80-ih i ranih 90-ih

their changes went into effect,

te su promjene stupile na snagu

swapping out Kanner's narrow model

zamjenjujući Kannerov uzak model

for Asperger's broad and inclusive one.

Aspergerovim širokim i uključujućim modelom.

These changes weren't happening in a vacuum.

Te se promjene nisu događale u vakuumu.

By coincidence, as Lorna and Judith worked behind the scenes

Sasvim slučajno, dok su Lorna i Judith u tajnosti radile

to reform the criteria,

na reformi kriterija,

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

ljudi diljem svijeta po prvi su put gledali odraslog autista.

Before "Rain Man" came out in 1988,

Prije nego što je 1988. izašao "Kišni čovjek",

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

samo je malen krug stručnjaka znao kako izgleda autizam.

but after Dustin Hoffman's unforgettable performance as Raymond Babbitt

No, nakon što je Hoffmanova neponovljiva interpretacija Raymonda Babbitta

earned "Rain Man" four Academy Awards,

"Kišnom čovjeku" zaradila četiri Oscara,

pediatricians, psychologists,

pedijatri, psiholozi,

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

učitelji i roditelji diljem svijeta znali su kako izgleda autizam.

Coincidentally, at the same time,

Igrom slučaja, u to isto vrijeme

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

pojavili su se prvi testovi za dijagnozu autizma jednostavni za korištenje.

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

Više vam nije trebala veza do malog kruga stručnjaka

to get your child evaluated.

kako bi vaše dijete dobilo procjenu.

The combination of "Rain Man,"

Kombinacija "Kišnog čovjeka",

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

promjena u kriteriju i pojava tih testova

created a network effect,

stvorili su mrežni učinak,

a perfect storm of autism awareness.

savršenu oluju svijesti o autizmu.

The number of diagnoses started to soar,

Broj dijagnoza vinuo se u nebesa,

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

baš kao što su Lorna i Judith predvidjele, točnije baš kao što su se nadale da hoće,

enabling autistic people and their families

što je autistima i obiteljima autista pomoglo

to finally get the support and services they deserved.

dobiti zasluženu podršku i usluge.

Then Andrew Wakefield came along

Zatim se pojavio Andrew Wakefield

to blame the spike in diagnoses on vaccines,

i za taj je porast okrivio cjepiva.

a simple, powerful,

Bila je to jednostavna, moćna

and seductively believable story

i zamamno vjerojatna priča

that was as wrong as Kanner's theory

pogrešna gotovo kao i Kannerova teorija

that autism was rare.

o neučestalosti autizma.

If the CDC's current estimate,

Ako je točna trenutna pretpostavka CDC-a

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

da je svako 68. dijete u Americi na ovom spektru,

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

autisti su jedna od najvećih manjinskih grupa u svijetu.

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

Nedavnih godina autisti su se ujedinili na internetu

to reject the notion that they are puzzles to be solved

kako bi opovrgnuli vjerovanje da su oni tek zagonetke koje treba riješiti

by the next medical breakthrough,

sljedeće otkriće u medicini

coining the term "neurodiversity"

te pritom stvarajući pojam "neuroraznolikosti"

to celebrate the varieties of human cognition.

kako bi slavili razlike u ljudskoj kogniciji.

One way to understand neurodiversity

Jedan od načina razumjevanja neuroraznolikosti

is to think in terms of human operating systems.

uključuje razmišljanje u kontekstu ljudskih operativnih sustava.

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

To što računalo nema Windowse, ne znači da to računalo ne valja.

By autistic standards, the normal human brain

Prema autističkim standardima normalom ljudskom mozgu

is easily distractable,

lako je odvući pažnju,

obsessively social,

pretjerano je društven

and suffers from a deficit of attention to detail.

te pati od manjka pažnje za detalje.

To be sure, autistic people have a hard time

Autistima je teško

living in a world not built for them.

živjeti u svijetu nenamijenjenom za njih.

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

Sedamdeset godina kasnije još uvijek tek sustižemo Aspergera

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

koji je vjerovao da se "lijek" za najograničavajuće aspekte autizma

is to be found in understanding teachers,

može pronaći u učiteljima prepunim razumijevanja,

accommodating employers,

prilagodljivim poslodavcima,

supportive communities,

podržavajućim zajednicama

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

i roditeljima koji vjeruju u potencijal svoje djece.

An autistic [man] named Zosia Zaks once said,

Autistični muškarac Zosia Zaks jednom je prilikom izjavio:

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

"Treba nam pomoć svih da ispravimo put na kojem se našlo čovječanstvo."

As we sail into an uncertain future,

Dok plovimo prema nesigurnoj budućnosti,

we need every form of human intelligence on the planet

svaki oblik ljudske inteligencije na planetu treba

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

zajedničkim naporima svladati izazove s kojima se kao društvo suočavamo.

We can't afford to waste a brain.

Ne možemo si priuštiti da izgubimo ijedan mozak.

Thank you.

Hvala.

(Applause)

(Pljesak)