Steve Silberman: The forgotten history of autism

Translator: Aida Zečkanović Reviewer: Nika Kotnik

Just after Christmas last year,

Lani po božiču

132 kids in California got the measles

je 132 otrok v Kaliforniji zbolelo za ošpicami,

by either visiting Disneyland

po tem ko so obiskali Disneyland

or being exposed to someone who'd been there.

ali bili v stiku s kom, ki je bil tam.

The virus then hopped the Canadian border,

Virus je prečkal kanadsko mejo

infecting more than 100 children in Quebec.

in okužil več kot 100 otrok v Quebecu.

One of the tragic things about this outbreak

Eno izmed tragičnih dejstev o tem izbruhu je,

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

da so ošpice, ki so lahko smrtonosne za otroke z oslabelim imunskim sistemom,

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

ena izmed najlažje preprečljivih bolezni na svetu.

An effective vaccine against it

Učinkovito cepivo za ošpice

has been available for more than half a century,

poznamo že več kot pol stoletja,

but many of the kids involved in the Disneyland outbreak

ampak otroci, ki so zboleli med izbruhom v Disneylandu,

had not been vaccinated

niso bili cepljeni,

because their parents were afraid

ker so se njihovi starši bali

of something allegedly even worse:

domnevno se strašnejše bolezni:

autism.

avtizma.

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

Ampak... Ali ni bil članek, ki je sprožil polemike

about autism and vaccines

o avtizmu in cepivih

debunked, retracted,

ovržen, preklican

and branded a deliberate fraud

in označen za namerno prevaro

by the British Medical Journal?

v Britanski Medicinski reviji?

Don't most science-savvy people

Ali večina znanstveno osveščenih ljudi

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

ne ve, da je teorija o cepivih, ki povzročajo avtizem bedarija?

I think most of you do,

Mislim, da večina izmed vas to ve,

but millions of parents worldwide

ampak milijone staršev po svetu

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

je še strah, da bodo zaradi cepiv njihovi otroci zboleli z avtizmom.

Why?

Zakaj?

Here's why.

Zato.

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

Ta graf prikazuje višanje prevalence avtizma skozi čas.

For most of the 20th century,

Skozi 20. stoletje

autism was considered an incredibly rare condition.

je avtizem veljal za izredno redko bolezen.

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

Redki psihologi in pediatri, ki so sploh slišali zanjo,

figured they would get through their entire careers

so menili, da v svoji celotni karieri

without seeing a single case.

ne bodo videli niti enega samega primera.

For decades, the prevalence estimates remained stable

Desetletja je bila prevalenca ocenjena

at just three or four children in 10,000.

na tri ali štiri otroke na 10 000.

But then, in the 1990s,

Ampak v 90. letih prejšnjega stoletja

the numbers started to skyrocket.

je ta številka naglo porasla.

Fundraising organizations like Autism Speaks

Dobrodelne organizacije kot Autism Speaks (Avtizem Govori)

routinely refer to autism as an epidemic,

o avtizmu vedno znova govorijo kot o epidemiji,

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

kakor da se ga lahko nalezeš od drugega otroka v Disenylandu.

So what's going on?

Kaj se torej dogaja?

If it isn't vaccines, what is it?

Če niso kriva cepiva, kaj je?

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

Če vprašate ljudi v Centru za obvladovanje bolezni (COB) v Atlanti,

what's going on,

kaj se dogaja,

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

se zanašajo na fraze kot: "razširjeni diagnostični kriteriji"

and "better case finding"

in "učinkovitejše odkrivanje primerov"

to explain these rising numbers.

za pojasnjevanje porasta v številu avtističnih otrok.

But that kind of language

Ampak takšni odgovori

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

ne pomirijo strahu mlade matere,

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

ki se neuspešno trudi vzpostaviti očesni stik s svojim dveletnikom.

If the diagnostic criteria had to be broadened,

Če smo morali razširiti diagnostične kriterije,

why were they so narrow in the first place?

zakaj so bili prej tako ozki?

Why were cases of autism so hard to find

Zakaj je tako težko najti opise primerov avtizma

before the 1990s?

pred 90. leti 20. stoletja?

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

Pred petimi leti sem se odločil, da bom našel odgovore na ta vprašanja.

I learned that what happened

Ugotovil sem, da to kar se je zgodilo,

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

ni toliko povezano s počasnim in previdnim napredkom znanosti,

than it does with the seductive power of storytelling.

pač pa z močjo zapeljive pripovedi.

For most of the 20th century,

Tekom 20. stoletja

clinicians told one story

so kliniki pripovedovali le eno zgodbo,

about what autism is and how it was discovered,

o tem kaj avtizem je in kako so ga odkrili.

but that story turned out to be wrong,

Ampak ta zgodba se je izkazala za napačno

and the consequences of it

in posledice te napake

are having a devastating impact on global public health.

imajo poguben vpliv na svetovno javno zdravje.

There was a second, more accurate story of autism

Obstaja še druga, bolj pravilna zgodba o avtizmu,

which had been lost and forgotten

ki je bila izgubljena in pozabljena

in obscure corners of the clinical literature.

v temnih kotičkih medicinske literature.

This second story tells us everything about how we got here

Ta druga zgodba nam govori o tem, kako smo prisli do sem

and where we need to go next.

in k čemur moramo stremeti v prihodnosti.

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

Prva zgodba se začne s pediatričnim psihiatrom v bolnisnici Johna Hopkinsa

named Leo Kanner.

z imenom Leo Kanner.

In 1943, Kanner published a paper

Leta 1943 je Kanner objavil članek,

describing 11 young patients who seemed to inhabit private worlds,

v katerem je opisal 11 mladih pacientov, ki so navidez živeli v lastnem svetu

ignoring the people around them,

in ignorirali ljudi okoli sebe,

even their own parents.

celo lastne starše.

They could amuse themselves for hours

Cele ure so se lahko zabavali,

by flapping their hands in front of their faces,

tako da so si z rokami mahali pred obrazi.

but they were panicked by little things

Ampak zlahka jih je zajela panika,

like their favorite toy being moved from its usual place

na primer če so prestavili njihovo najljubšo igračko,

without their knowledge.

ne da bi jim povedali.

Based on the patients who were brought to his clinic,

Glede na paciente, ki so prihajali v njegovo kliniko,

Kanner speculated that autism is very rare.

je Kanner predvideval, da je avtizem zelo redek.

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

V 50. letih je kot vodilni svetovni strokovnjak na tem področju,

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

naznanil, da je videl manj kot 150 primerov pravega avtizma,

while fielding referrals from as far away as South Africa.

čeprav so k njemu pošiljali otroke od vsepovsod, celo iz Južnoafriške Republike.

That's actually not surprising,

To pravzaprav ni presenetljivo,

because Kanner's criteria for diagnosing autism

saj so bili Kannerjevi diagnosticni kriteriji za avtizem

were incredibly selective.

izredno selektivni.

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

Otrokom, ki so imeli epileptične napade, je nerad postavil diagnozo avtizma,

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

čeprav danes vemo, da je epilepsija zelo pogosta pri avtističnih pacientih.

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

Nekoč se je pohvalil, da je 9 izmed 10 otrok,

referred to his office as autistic by other clinicians

ki so jih k njemu napotili drugi zdravniki,

without giving them an autism diagnosis.

odpravil brez da bi jim diagnosticiral avtizem.

Kanner was a smart guy,

Kanner je bil pameten moški,

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

a veliko njegovih teorij je bilo napačnih.

He classified autism as a form of infantile psychosis

Avtizem je klasificiral kot obliko otroške psihoze,

caused by cold and unaffectionate parents.

ki naj bi jo povzročili hladni in neljubeči starši.

These children, he said,

Rekel je, da so te otroke

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

vzgajali v "hladilniku, ki ga niso nikoli odtalili."

At the same time, however,

Istočasno pa je

Kanner noticed that some of his young patients

Kanner opazil, da imajo nekateri njegovi mlajši pacienti,

had special abilities that clustered in certain areas

posebne sposobnosti na določenih podrocjih

like music, math and memory.

kot so glasba, matematika in spomin.

One boy in his clinic

En deček v njegovi kliniki

could distinguish between 18 symphonies before he turned two.

je razločil med 18 različnimi simfonijami, preden je dopolnil dve leti.

When his mother put on one of his favorite records,

Ko je mama zavrtela njegovo priljubljeno ploščo,

he would correctly declare, "Beethoven!"

je pravilno oznanil: "Beethoven!"

But Kanner took a dim view of these abilities,

A Kanner teh sposobnosti ni odobraval

claiming that the kids were just regurgitating things

in je trdil, da otroci le ponavljajo reči,

they'd heard their pompous parents say,

ki so jih slišali od svojih domišljavih staršev,

desperate to earn their approval.

saj si želijo njihovega odobravanja.

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

Posledično je avtizem postal vir sramote in stigme za družine

and two generations of autistic children

in dve generaciji avtističnih otrok,

were shipped off to institutions for their own good,

ki so jih poslali v institucije "v njihovo lastno dobro,"

becoming invisible to the world at large.

sta postali nevidni za svet.

Amazingly, it wasn't until the 1970s

Presenetljivo, so šele v 70. letih 20. stoletja

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

raziskovalci pričeli preverjati Kannerjevo teorijo, da je avtizem redek.

Lorna Wing was a cognitive psychologist in London

Lorna Wing je bila kognitivna psihologinja v Londonu

who thought that Kanner's theory of refrigerator parenting

in je menila, da je Kannerjeva teorija o "hladni vzgoji"

were "bloody stupid," as she told me.

izredno neumna.

She and her husband John were warm and affectionate people,

Z možem Johnom sta bila topla, ljubeča človeka

and they had a profoundly autistic daughter named Susie.

in sta kljub temu imela hudo avtistično hčer Susie.

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

Lorna in John sta vedela, kako težko je vzgajati otroka kot je Susie

without support services,

brez podpornih služb,

special education,

posebne izobrazbe

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

in ostalih sredstev, do katerih nimaš dostopa brez postavljene diagnoze.

To make the case to the National Health Service

Da bi lahko Nacionalno zdravstveno sluzbo zaprosili

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

za več sredstev za avtistične otroke in njihove družine,

Lorna and her colleague Judith Gould

sta se Lorna in njena sodelavka Judith Gould

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

odločili, da bosta storili nekaj, kar bi moralo biti narejeno pred 30 leti.

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

Izvedli sta študijo o pogostosti avtizma v splošni populaciji.

They pounded the pavement in a London suburb called Camberwell

Preučevali sta Londonsko predmestje Camberwell

to try to find autistic children in the community.

in iskali avtistične otroke v skupnosti.

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

Njune ugotovitve, so jasno pokazale, da je Kannerjev model preozek,

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

saj je avtizem v resnici zelo pester in raznolik.

Some kids couldn't talk at all,

Nekateri otroci sploh niso mogli govoriti,

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

medtem ko so drugi neprestano govorili o svoji prevzetosti z astrofiziko,

dinosaurs or the genealogy of royalty.

dinozavri ali genealogijo kraljevih družin.

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

Ali drugače povedano, teh otrok se ni dalo enostavno popredalčkati,

as Judith put it,

kot se je izrazila Judith.

and they saw lots of them,

In videli sta mnogo teh otrok,

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

veliko več kot je predvideval Kannerjev monolitični model.

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

Sprva so ju njune najdbe zelo zmedle.

How had no one noticed these children before?

Kako da teh otrok ni nihče opazili že prej?

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

Potem pa je Lorna odkrila članek, ki je bil obavljen

in German in 1944,

v Nemčiji leta 1944,

the year after Kanner's paper,

le leto po objavi Kannerjevega članka,

and then forgotten,

in bil nato pozabljen,

buried with the ashes of a terrible time

pokopan v pepelu grozovitih časov,

that no one wanted to remember or think about.

ki se jih nihče ni želel spominjati ali misliti nanje.

Kanner knew about this competing paper,

Kanner je poznal članek svojega tekmeca,

but scrupulously avoided mentioning it in his own work.

ampak ga namerno ni omenjal v svojih lastnih publikacijah.

It had never even been translated into English,

Članka niso nikoli niti prevedli v angleščino,

but luckily, Lorna's husband spoke German,

ampak na srečo je Lornin mož govoril nemško

and he translated it for her.

in ga je prevedel zanjo.

The paper offered an alternate story of autism.

Članek je vseboval alternativno zgodbo o avtizmu.

Its author was a man named Hans Asperger,

Avtor je bil Hans Asperger,

who ran a combination clinic and residential school

ki je vodil kombinirano kliniko in internatsko šolo

in Vienna in the 1930s.

na Dunaju v 30. letih 20. stoletja.

Asperger's ideas about teaching children with learning differences

Aspergerjeve ideje o poučevanju otrok s posebnimi potrebami

were progressive even by contemporary standards.

so bile progresivne celo po današnjih standardih.

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

Jutra so se v njegovi kliniki začenjala s telovadbo ob glasbi,

and the children put on plays on Sunday afternoons.

ob nedeljskih popoldnevih pa so otroci uprizarjali gledališke predstave.

Instead of blaming parents for causing autism,

Namesto, da bi za razvoj avtizma obtoževal starše,

Asperger framed it as a lifelong, polygenetic disability

ga je Asperger označil za doživljenjsko poligensko obolenje,

that requires compassionate forms of support and accommodations

ki zahteva sočutno podporo in prilagajanje

over the course of one's whole life.

tekom celotnega življenja.

Rather than treating the kids in his clinic like patients,

Otrok v svoji kliniki ni obravnaval kot paciente,

Asperger called them his little professors,

pač pa jih je klical "moji mali profesorji"

and enlisted their help in developing methods of education

in z njihovo pomočjo razvijal nove metode poučevanja,

that were particularly suited to them.

ki so bile prilagojene zanje.

Crucially, Asperger viewed autism as a diverse continuum

Ključno je, da je Asperger avtizem videl kot raznolik spekter,

that spans an astonishing range of giftedness and disability.

ki vključuje izredno velik razpon nadarjenosti in nezmožnosti.

He believed that autism and autistic traits are common

Verjel je, da so avtizem in avtistične značilnosti pogoste

and always have been,

in so tudi vedno bile,

seeing aspects of this continuum in familiar archetypes from pop culture

saj je te značilnosti prepoznal v znanih arhetipih iz pop kulture,

like the socially awkward scientist

npr. arhetip družabno nespretnega znanstvenika

and the absent-minded professor.

in zmedenega profesorja.

He went so far as to say,

Šel je celo tako daleč, da je trdil,

it seems that for success in science and art,

da je za uspeh v znanosti in umetnosti

a dash of autism is essential.

potreben kanček avtizma.

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

Lorna in Judith sta spoznali, da se je Kanner motil tako o pogostosti avtizma,

as he had been about parents causing it.

kakor tudi o njegovem vzroku.

Over the next several years,

V naslednjih letih

they quietly worked with the American Psychiatric Association

sta na skrivaj sodelovali z Ameriško psihiatrično asociacijo,

to broaden the criteria for diagnosis

da bi razširili kriterije za diagnozo,

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

tako da bi odražali raznovrstnost tega, čemur danes pravimo "avtistični spekter."

In the late '80s and early 1990s,

V poznih 80. in zgodnjih 90. 20. stoletja

their changes went into effect,

so njune spremembe postale veljavne

swapping out Kanner's narrow model

in so zamenjale Kannerjev ozek model,

for Asperger's broad and inclusive one.

z Aspergerjevim širokim in vključujočim.

These changes weren't happening in a vacuum.

A te spremembe se niso dogajale v vakumu.

By coincidence, as Lorna and Judith worked behind the scenes

Po naključju so takrat, ko sta Lorna in Judith v zakulisju

to reform the criteria,

izboljševali kriterije,

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

ljudje po celem svetu prvič videli avtistično odraslo osebo.

Before "Rain Man" came out in 1988,

Pred izidom filma Deževni mož leta 1988,

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

je samo majhen krog strokovnjakov vedel, kako avtizem izgleda.

but after Dustin Hoffman's unforgettable performance as Raymond Babbitt

Po nepozabnem nastopu Dustina Hoffmana v vlogi Raymonda Babbitta,

earned "Rain Man" four Academy Awards,

ki je filmu prislužil štiri Oskarje,

pediatricians, psychologists,

so pediatri, psihologi,

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

učitelji in starši po vsem svetu vedeli kako izgleda avtizem.

Coincidentally, at the same time,

Po naključju so istočasno

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

uvedli tudi prve preproste klinične teste za diagnostiko avtizma.

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

Ni bilo več potrebno biti povezan z majhnim krogom strokovnjakov za avtizem,

to get your child evaluated.

da bi bil tvoj otrok pregledan.

The combination of "Rain Man,"

Kombinacija Deževnega moža,

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

spremenjenih kriterijev in uvedbe novih testov

created a network effect,

je povzročila efekt snežne krogle

a perfect storm of autism awareness.

in velik porast ozaveščenosti o avtizmu.

The number of diagnoses started to soar,

Število diagnoz je sunkovito poraslo,

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

kakor sta Lorna in Judith predvideli in upali,

enabling autistic people and their families

in omogočilo avtistom in njihovim družinam

to finally get the support and services they deserved.

dostop do sredstev in podpore, ki so jo zaslužili.

Then Andrew Wakefield came along

Nato pa se je pojavil Andrew Wakefield

to blame the spike in diagnoses on vaccines,

in za porast v številu diagnoz okrivil cepiva.

a simple, powerful,

Njegova zgodba je preprosta, vplivna

and seductively believable story

in zapeljivo prepričljiva,

that was as wrong as Kanner's theory

vendar zmotna, tako kot Kannerjeva teorija,

that autism was rare.

da je avtizem redek.

If the CDC's current estimate,

Če je COB-jeva ocena,

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

da ima eden na 68 ameriških otrok motnjo avtističnega spektra, pravilna,

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

potem so avtistični ljudje ena izmed največjih svetovnih manjšin.

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

V zadnjih letih so se avtistični ljudje povezali preko interneta,

to reject the notion that they are puzzles to be solved

da bi oporekali predstavi, da so uganke, ki jih moramo rešiti

by the next medical breakthrough,

z novim medicinskim prebojem.

coining the term "neurodiversity"

Skovali so pojem "nevro-raznolikost,"

to celebrate the varieties of human cognition.

da bi proslavili pestrost človeške kognicije.

One way to understand neurodiversity

Nevro-raznolikost si lahko predstavljamo kot

is to think in terms of human operating systems.

človeške operacijske sisteme.

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

Če naš računalnik ne uporablja OS Windows, še ne pomeni, da je pokvarjen.

By autistic standards, the normal human brain

Z avtističnega stališča so normalni človeški možgani

is easily distractable,

zlahka odvrnljivi,

obsessively social,

pretirano socialno usmerjeni

and suffers from a deficit of attention to detail.

in premalo pozorni na podrobnosti.

To be sure, autistic people have a hard time

Seveda je avtističnim ljudem težko

living in a world not built for them.

živeti na svetu, ki ni prilagojen zanje.

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

Sedemdeset let po njegovem članku, še vedno nismo na isti ravni kot Asperger,

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

ki je verjel, da so "zdravilo" za še tako onesposabljajoče vidike avtizma

is to be found in understanding teachers,

razumevajoči učitelji,

accommodating employers,

prilagodljivi delodajalci,

supportive communities,

podpirajoče skupnosti

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

in starši, ki verjamejo v otrokov potencial.

An autistic [man] named Zosia Zaks once said,

Avtistična ženska Zosia Zaks, je nekoč rekla:

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

"Vsi moramo sodelovati pri obračanju ladje človeštva v pravo smer."

As we sail into an uncertain future,

Ko plovemo v neznano prihodnost,

we need every form of human intelligence on the planet

morajo vse oblike inteligence na tem planetu

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

sodelovati pri spoprijemanju z izzivi, s katerimi se sooča naša družba.

We can't afford to waste a brain.

Vsi možgani so za nas nepogrešljivi.

Thank you.

Hvala

(Applause)

(Aplavz)