Steve Silberman: The forgotten history of autism

Prevodilac: Ivana Krivokuća Lektor: Mile Živković

Just after Christmas last year,

Odmah posle Božića prošle godine,

132 kids in California got the measles

132 deteta u Kaliforniji je dobilo male boginje

by either visiting Disneyland

ili posetivši Diznilend

or being exposed to someone who'd been there.

ili tako što su bili izloženi nekome ko je bio tamo.

The virus then hopped the Canadian border,

Virus je zatim preskočio kanadsku granicu,

infecting more than 100 children in Quebec.

zarazivši više od 100 dece u Kvebeku.

One of the tragic things about this outbreak

Jedna od tragičnih stvari u vezi sa ovom epidemijom

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

je da su male boginje,

koje mogu biti pogubne za dete sa oslabljenim imunim sistemom,

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

jedna od bolesti koje su najlakše sprečive na svetu.

An effective vaccine against it

Efikasna vakcina protiv njih

has been available for more than half a century,

je dostupna više od polovine veka,

but many of the kids involved in the Disneyland outbreak

ali mnoga deca obuhvaćena epidemijom u Diznilendu

had not been vaccinated

nisu bila vakcinisana

because their parents were afraid

jer su njihovi roditelji bili uplašeni

of something allegedly even worse:

od nečeg navodno još goreg:

autism.

autizma.

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

Ali čekajte - zar rad koji je podstakao kontroverzu

about autism and vaccines

o autizmu i vakcinama

debunked, retracted,

nije raskrinkan, poništen,

and branded a deliberate fraud

i obeležen kao namerna prevara

by the British Medical Journal?

od strane Britanskog medicinskog časopisa?

Don't most science-savvy people

Zar većina ljudi koji se razumeju u nauku

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

ne zna da je teorija da vakcine izazivaju autizam jedna velika prevara?

I think most of you do,

Mislim da većina vas to zna,

but millions of parents worldwide

ali milioni roditelja širom sveta

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

se i dalje plaše da vakcine stavljaju decu pod rizik od autizma.

Why?

Zašto?

Here's why.

Evo zašto.

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

Ovo je grafikon procene učestalosti autizma koja se vremenom povećava.

For most of the 20th century,

Tokom većine XX veka,

autism was considered an incredibly rare condition.

autizam se smatrao izuzetno retkim stanjem.

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

Nekolicina psihologa i pedijatara koji su uopšte čuli za njega

figured they would get through their entire careers

pretpostavljali su da će završiti svoju karijeru

without seeing a single case.

ne videvši ni jedan jedini slučaj.

For decades, the prevalence estimates remained stable

Decenijama je procena učestalosti ostala nepromenjena

at just three or four children in 10,000.

sa svega tri ili četiri deteta na 10 000.

But then, in the 1990s,

Ali onda, 1990-ih godina,

the numbers started to skyrocket.

brojevi su počeli da naglo rastu.

Fundraising organizations like Autism Speaks

Dobrotvorne organizacije poput "Autism Speaks"

routinely refer to autism as an epidemic,

rutinski pominju autizam kao epidemiju,

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

kao da možete da ga dobijete od drugog deteta u Diznilendu.

So what's going on?

Dakle, šta se dešava?

If it isn't vaccines, what is it?

Ako nisu vakcine u pitanju, šta jeste?

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

Ako pitate ljude tamo dole u ​​Centrima za kontrolu bolesti u Atlanti

what's going on,

šta se dešava,

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

oni se obično oslanjaju na izraze kao što su

"prošireni dijagnostički kriterijumi" i "bolje pronalaženje slučajeva"

and "better case finding"

to explain these rising numbers.

da bi objasnili te brojeve u porastu.

But that kind of language

Ali takav jezik

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

ne postiže naročito da se ublaže strahovanja mlade majke

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

koja traga za kontaktom očima na licu svog dvogodišnjaka.

If the diagnostic criteria had to be broadened,

Ako su dijagnostički kriterijumi morali da budu prošireni,

why were they so narrow in the first place?

zašto su prvobitno bili tako suženi?

Why were cases of autism so hard to find

Zašto je bilo tako teško pronaći slučajeve autizma

before the 1990s?

pre 1990-ih godina?

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

Pre pet godina, odlučio sam da pokušam da razotkrijem odgovore na ova 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

ima manje veze sa sporim i opreznim napretkom nauke

than it does with the seductive power of storytelling.

nego što ima sa zavodljivom moći pripovedanja.

For most of the 20th century,

Većim delom XX veka,

clinicians told one story

lekari su pričali jednu priču

about what autism is and how it was discovered,

o tome šta je autizam i kako se otkriva,

but that story turned out to be wrong,

ali ispostavilo se da je ta priča pogrešna,

and the consequences of it

a njene posledice

are having a devastating impact on global public health.

imaju razarajući uticaj na globalno javno zdravlje.

There was a second, more accurate story of autism

Postojala je i druga, tačnija priča o autizmu

which had been lost and forgotten

koja je napuštena i zaboravljena

in obscure corners of the clinical literature.

u mračnim ćoškovima kliničke literature.

This second story tells us everything about how we got here

Ta druga priča nam govori sve o tome kako smo dospeli ovde

and where we need to go next.

i gde treba sledeće da se zaputimo.

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

Prva priča počinje sa dečijim psihijatrom u bolnici Džon Hopkins

named Leo Kanner.

po imenu Lio Kaner.

In 1943, Kanner published a paper

1943. godine, Kaner je objavio rad

describing 11 young patients who seemed to inhabit private worlds,

opisujući 11 mladih pacijenata za koje se činilo

da nastanjuju skrivene svetove, ignorišući ljude oko sebe,

ignoring the people around them,

even their own parents.

čak i sopstvene roditelje.

They could amuse themselves for hours

Mogli su da se razonode satima

by flapping their hands in front of their faces,

pljeskajući rukama ispred lica,

but they were panicked by little things

ali bi se uspaničili zbog malih stvari

like their favorite toy being moved from its usual place

kao što je premeštanje njihove omiljene igračke

sa uobičajenog mesta bez njihovog znanja.

without their knowledge.

Based on the patients who were brought to his clinic,

Na osnovu pacijenata koji su dovedeni na njegovu kliniku,

Kanner speculated that autism is very rare.

Kanner je mislio da je autizam veoma redak.

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

Do 1950-ih, kao vodeći svetski autoritet na ovu temu,

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

izjavio je da je video manje od 150 pravih slučajeva tog sindroma

while fielding referrals from as far away as South Africa.

dok je radio sa ljudima čak i iz Južne Afrike.

That's actually not surprising,

To zapravo nije iznenađujuće,

because Kanner's criteria for diagnosing autism

jer su Kanerovi kriterijumi za postavljanje dijagnoze autizma

were incredibly selective.

bili neverovatno selektivni.

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

Na primer, osporavao je davanje dijagnoze

deci koja su imala napade, a sada znamo da je epilepsija vrlo česta kod autizma.

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

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

Jednom se hvalio da je vratio devetoro od 10 dece

referred to his office as autistic by other clinicians

koju su drugi kliničari uputili na njegovu kancelariju,

without giving them an autism diagnosis.

a da im nije postavio dijagnozu autizma.

Kanner was a smart guy,

Kaner je bio pametan tip,

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

ali veliki broj njegovih teorija nije uspeo.

He classified autism as a form of infantile psychosis

On je klasifikovao autizam kao oblik infantilne psihoze

caused by cold and unaffectionate parents.

koju uzrokuju hladni roditelji koji ne pružaju ljubav.

These children, he said,

Ova deca, govorio je,

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

su uredno držana u frižideru koji se nije odledio.

At the same time, however,

Istovremeno, međutim,

Kanner noticed that some of his young patients

Kaner je primetio da su neki od njegovih mladih pacijenata

had special abilities that clustered in certain areas

imali posebne sposobnosti koje su se grupisale u određene oblasti

like music, math and memory.

kao što su muzika, matematika i pamćenje.

One boy in his clinic

Jedan dečak na njegovoj klinici

could distinguish between 18 symphonies before he turned two.

mogao je da razlikuje 18 simfonija pre nego što je napunio dve godine.

When his mother put on one of his favorite records,

Kada bi njegova majka pustila jednu od njegovih omiljenih ploča,

he would correctly declare, "Beethoven!"

on bi tačno izjavio: "Betoven!"

But Kanner took a dim view of these abilities,

Ali Kaner nije uvažio ove sposobnosti,

claiming that the kids were just regurgitating things

tvrdeći da su deca samo ponavljala

they'd heard their pompous parents say,

ono što bi čuli da govore njihovi pompezni roditelji,

desperate to earn their approval.

očajni da steknu njihovo priznanje.

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

Kao rezultat toga, autizam je postao izvor stida i stigmatizacije za porodice,

and two generations of autistic children

i dve generacije autistične dece

were shipped off to institutions for their own good,

je otpremljeno u institucije za njihovo dobro,

becoming invisible to the world at large.

postavši nevidljivi za čitav svet.

Amazingly, it wasn't until the 1970s

Zapanjujuće je da su tek 1970-ih

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

istraživači počeli da proveravaju Kanerovu teoriju da je autizam redak.

Lorna Wing was a cognitive psychologist in London

Lorna Ving je bila kognitivna psihološkinja u Londonu

who thought that Kanner's theory of refrigerator parenting

koja je smatrala da je Kanerova teorija o hladnom roditeljstvu

were "bloody stupid," as she told me.

"prokleto glupa", kako mi je rekla.

She and her husband John were warm and affectionate people,

Ona i njen suprug Džon su bili topli i nežnI ljudi,

and they had a profoundly autistic daughter named Susie.

a imali su duboko autističnu ćerku Suzi.

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

Lorna i Džon su znali koliko je bilo teško podići dete kao što je Suzi

without support services,

bez službi podrške,

special education,

specijalnog obrazovanja,

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

i drugih resursa koji su izvan domašaja bez dijagnoze.

To make the case to the National Health Service

Da bi obrazložili Nacionalnoj zdravstvenoj službi

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

da je potrebno više resursa za autističnu decu i njihove porodice,

Lorna and her colleague Judith Gould

Lorna i njena koleginica Džudit Guld

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

odlučile su da urade nešto što je trebalo da bude urađeno 30 godina pre toga.

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

Pokrenule su istraživanje o učestalosti autizma u opštoj populaciji.

They pounded the pavement in a London suburb called Camberwell

Prevrnuli su predgrađe Londona zvano Kambervel

to try to find autistic children in the community.

da bi pronašli autističnu decu u zajednici.

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

Onim što su videli, postalo je jasno da je Kanerov model bio suviše ograničen,

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

dok je stvarnost autizma mnogo više šarenolika i raznovrsna.

Some kids couldn't talk at all,

Neka deca uopšte nisu umela da pričaju,

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

dok su druga naklapala nadugačko o svojoj fascinaciji astrofizikom,

dinosaurs or the genealogy of royalty.

dinosaurusima ili rodoslovima plemstva.

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

Drugim rečima, ova deca se nisu uklapala u fine, uredne kutije,

as Judith put it,

kako je Džudit to formulisala,

and they saw lots of them,

a videli su ih mnogo,

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

mnogo više nego što bi to Kanerov monolitni model predvideo.

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

U početku, nisu mogli da nađu smisao u svojim podacima.

How had no one noticed these children before?

Kako to da niko pre nije primetio tu decu?

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

Ali onda je Lorna naišla na referencu na rad koji je objavljen

in German in 1944,

u Nemačkoj 1944. godine,

the year after Kanner's paper,

godinu dana nakon Kanerovog rada,

and then forgotten,

i zatim je zaboravljen,

buried with the ashes of a terrible time

zakopan u pepelu užasnog vremena

that no one wanted to remember or think about.

koje niko nije želeo da pamti niti da misli o njemu.

Kanner knew about this competing paper,

Kaner je znao za taj konkurentski rad,

but scrupulously avoided mentioning it in his own work.

ali brižljivo izbegavao da ga pominje u svom radu.

It had never even been translated into English,

Nikada nije preveden na engleski,

but luckily, Lorna's husband spoke German,

ali srećom, Lornin suprug je govorio nemački,

and he translated it for her.

i preveo ga je za nju.

The paper offered an alternate story of autism.

Rad je ponudio alternativnu priču o autizmu.

Its author was a man named Hans Asperger,

Njegov autor je bio čovek po imenu Hans Asperger,

who ran a combination clinic and residential school

koji je rukovodio spojem klinike i škole sa boravištem

in Vienna in the 1930s.

u Beču 1930-ih godina.

Asperger's ideas about teaching children with learning differences

Aspergerove ideje o učenju dece sa različitostima u učenju

were progressive even by contemporary standards.

bile su napredne čak i po savremenim standardima.

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

Jutra na njegovoj klinici bi započinjala časovima vežbanja prilagođenim muzici,

and the children put on plays on Sunday afternoons.

a deca bi igrala predstave nedeljom popodne.

Instead of blaming parents for causing autism,

Umesto da okrivi roditelje za prouzrokovanje autizma,

Asperger framed it as a lifelong, polygenetic disability

Asperger ga je zamislio kao doživotni, poligenetski invaliditet

that requires compassionate forms of support and accommodations

koji zahteva saosećajne oblike podrške i smeštaja

over the course of one's whole life.

tokom celog života osobe.

Rather than treating the kids in his clinic like patients,

Umesto da tretira decu na svojoj klinici kao pacijente,

Asperger called them his little professors,

Asperger ih je nazivao svojim malim profesorima,

and enlisted their help in developing methods of education

i koristio je njihovu pomoć u razvoju metoda obrazovanja

that were particularly suited to them.

koje su bile posebno pogodne za njih.

Crucially, Asperger viewed autism as a diverse continuum

U suštini, Asperger je video autizam kao raznovrstan kontinuum

that spans an astonishing range of giftedness and disability.

koji obuhvata zapanjujući spektar darovitosti i invaliditeta.

He believed that autism and autistic traits are common

Verovao je da su autizam i autistične osobine česte

and always have been,

i da su oduvek bile,

seeing aspects of this continuum in familiar archetypes from pop culture

videvši aspekte ovog kontinuuma u poznatim arhetipovima iz pop kulture

like the socially awkward scientist

kao što je društveno nespretan naučnik

and the absent-minded professor.

i rasejani profesor.

He went so far as to say,

Išao je toliko daleko da je rekao

it seems that for success in science and art,

da se čini da je za uspeh u nauci i umetnosti

a dash of autism is essential.

neophodno malčice autizma.

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

Lorna i Džudit su shvatile da je Kaner grešio u vezi sa time da je autizam redak

as he had been about parents causing it.

kao u pripisivanju uzroka roditeljima.

Over the next several years,

Tokom narednih nekoliko godina,

they quietly worked with the American Psychiatric Association

tiho su radile sa Američkom psihijatrijskom asocijacijom

to broaden the criteria for diagnosis

na proširenju dijagnostičkih kriterijuma

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

da bi prikazali raznolikost onoga što su nazvali "autistični spektar".

In the late '80s and early 1990s,

Kasnih 80-ih i ranih 90-ih,

their changes went into effect,

njihove izmene su došle na snagu,

swapping out Kanner's narrow model

zamenivši Kanerov uski model

for Asperger's broad and inclusive one.

Aspergerovim širokim i inkluzivnim.

These changes weren't happening in a vacuum.

Ove promene se nisu događale u vakuumu.

By coincidence, as Lorna and Judith worked behind the scenes

Igrom slučaja, dok su Lorna i Džudit radile iza kulisa

to reform the criteria,

da bi reformisale kriterijume,

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

ljudi širom sveta su prvi put videli odraslog autističnog čoveka.

Before "Rain Man" came out in 1988,

Pre nego što je "Kišni čovek" izašao 1988. godine,

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

samo je mali, interni krug eksperata znao kako autizam izgleda,

but after Dustin Hoffman's unforgettable performance as Raymond Babbitt

ali nakon što je nezaboravno izvođenje Dastina Hofmana u ulozi Rejmonda Bebita

earned "Rain Man" four Academy Awards,

zaradilo četiri Oskara za "Kišnog čoveka",

pediatricians, psychologists,

pedijatri, psiholozi,

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

učitelji i roditelji širom sveta su znali kako autizam izgleda.

Coincidentally, at the same time,

Sticajem okolnosti, istovremeno,

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

uvedeni su prvi lako primenljivi klinički testovi

za dijagnostikovanje autizma.

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

Više nije bilo potrebno da imate vezu sa tim malim krugom eksperata

to get your child evaluated.

da biste izvršili procenu vašeg deteta.

The combination of "Rain Man,"

Kombinacija "Kišnog čoveka",

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

promene kriterijuma i uvođenje ovih testova

created a network effect,

stvorili su efekat u mreži,

a perfect storm of autism awareness.

savršenu oluju svesti o autizmu.

The number of diagnoses started to soar,

Broj dijagnoza je počeo da se uzdiže,

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

baš kao što su Lorna i Džudit predvidele, zapravo nadale da hoće,

enabling autistic people and their families

omogućujući ljudima sa autizmom i njihovim porodicama

to finally get the support and services they deserved.

da konačno dobiju podršku i usluge koje zaslužuju.

Then Andrew Wakefield came along

Onda je došao Endru Vejkfild

to blame the spike in diagnoses on vaccines,

da okrivi vakcine za visok broja dijagnoza,

a simple, powerful,

jednostavna, snažna

and seductively believable story

i zavodljivo uverljiva priča

that was as wrong as Kanner's theory

koja je bila pogrešna kao i Kanerova teorija

that autism was rare.

da je autizam redak.

If the CDC's current estimate,

Ako je tačna trenutna procena Centra za kontrolu i prevenciju bolesti,

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

da se jedno od 68 dece u Americi nalazi na spektrumu,

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

autistični ljudi su jedna od najvećih manjinskih grupa na svetu.

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

Tokom poslednjih godina, autistični ljudi su se okupili na internetu

to reject the notion that they are puzzles to be solved

kako bi odbacili ideju da su oni zagonetka koju treba da reši

by the next medical breakthrough,

sledeće medicinsko otkriće,

coining the term "neurodiversity"

stvorivši pojam "neuroraznolikost"

to celebrate the varieties of human cognition.

u slavu raznovrsnosti ljudske kognicije.

One way to understand neurodiversity

Jedan od načina za razumevanje neuroraznolikosti

is to think in terms of human operating systems.

je razmišljati u smislu ljudskih operativnih sistema.

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

Samo zato što kompjuterom ne upravlja Vindous, ne znači da je pokvaren.

By autistic standards, the normal human brain

Po autističnim standardima, normalan ljudski mozak

is easily distractable,

je lako poremetiti,

obsessively social,

opsesivno je društven,

and suffers from a deficit of attention to detail.

i pati od manjka pažnje usmerene na detalje.

To be sure, autistic people have a hard time

Svakako, za autistične ljude je teško

living in a world not built for them.

što žive u svetu koji nije napravljen za njih.

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

Osamdeset godina kasnije, još uvek sustižemo Aspergera

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

koji je verovao da se "lek" za većinu onesposobljujućih aspekata autizma

is to be found in understanding teachers,

može naći kod učitelja sa razumevanjem,

accommodating employers,

prilagodljivih poslodavaca,

supportive communities,

u zajednicama koje pružaju podršku

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

i kod roditelja koji imaju veru u potencijal svoje dece.

An autistic [man] named Zosia Zaks once said,

Autistični muškarac po imenu Zoša Zeks je jednom rekao:

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

"Potrebne su nam sve ruke na palubi da bismo ispravili brod humanosti."

As we sail into an uncertain future,

Dok plovimo u neizvesnu budućnost,

we need every form of human intelligence on the planet

potrebno nam je da svaki oblik ljudske inteligencije na planeti

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

zajednički radi

da bismo se bavili izazovima sa kojima se suočavamo kao društvo.

We can't afford to waste a brain.

Ne možemo priuštiti da protraćimo mozak.

Thank you.

Hvala vam.

(Applause)

(Aplauz)