TED2015
Steve Silberman: The forgotten history of autism
Steve Silberman: Zaboravljena povijest autizma
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Prije nekoliko desetljeća tek je nekoliko pedijatara čulo za autizam. Godine 1975. procjenjivalo se da od njega pati svako 5 000. dijete, no danas se svako 68. dijete nalazi na autističnom spektru. Što je uzrokovalo takav nagao porast? Steve Silberman ukazuje na "savršenu oluju svijesti o autizmu" koja uključuje sljedeće: nekoliko doktora ponudilo je prihvatljivije gledište o autizmu, neočekivani događaj iz popularne kulture i novi klinički test. Međutim, kako bismo zaista shvatili o čemu se radi, moramo se vratiti austrijskom doktoru Hansu Aspergeru koji je 1944. objavio prvi takav članak, no kako je taj rad na vrijeme bio zakopan, autizam sve otad obavija veo zabluda. (Ovaj govor dio je TED2015 sesije vođene od strane Pop-Up Magazine: popupmagazine.com ili @popupmag na Twitteru.)
Steve Silberman - Writer and editor
Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius. Full bio
Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius. Full bio
Double-click the English transcript below to play the video.
00:12
Just after Christmas last year,
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Odmah nakon Božića prošle godine
00:15
132 kids in California got the measles
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132 djece u Kaliforniji dobilo je ospice
00:19
by either visiting Disneyland
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ili zato što su posjetili Disneyland
00:21
or being exposed to someone
who'd been there.
who'd been there.
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ili zato što su bili izloženi
nekome tko je bio ondje.
nekome tko je bio ondje.
00:24
The virus then hopped the Canadian border,
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Virus je zatim prešao kanadsku granicu,
00:27
infecting more than
100 children in Quebec.
100 children in Quebec.
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zarazivši više od stotinu djece
u pokrajini Quebec.
u pokrajini Quebec.
00:30
One of the tragic things
about this outbreak
about this outbreak
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Ono što je u toj
epidemiji tragično jest to
epidemiji tragično jest to
00:33
is that measles, which can be fatal
to a child with a weakened immune system,
to a child with a weakened immune system,
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što su ospice, koje za dijete oslabljenog
imuniteta mogu biti smrtonosne,
imuniteta mogu biti smrtonosne,
00:39
is one of the most easily
preventable diseases in the world.
preventable diseases in the world.
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bolest koju je u svijetu
vrlo jednostavno spriječiti.
vrlo jednostavno spriječiti.
00:43
An effective vaccine against it
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Učinkovito cjepivo protiv ospica
00:45
has been available for more
than half a century,
than half a century,
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dostupno je već više od 50 godina,
00:48
but many of the kids involved
in the Disneyland outbreak
in the Disneyland outbreak
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no mnogo djece uključeno
u epidemiju u Disneylandu
u epidemiju u Disneylandu
00:51
had not been vaccinated
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nije bilo cijepljeno
00:53
because their parents were afraid
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jer su se njihovi roditelji bojali
00:56
of something allegedly even worse:
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nečega što je navodno još gore:
00:59
autism.
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autizma.
01:00
But wait -- wasn't the paper
that sparked the controversy
that sparked the controversy
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No nisu li članak koji je izazvao polemike
01:04
about autism and vaccines
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o autizmu i cjepivima
01:06
debunked, retracted,
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razotkrili, porekli
01:08
and branded a deliberate fraud
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i proglasili namjernom prijevarom
01:11
by the British Medical Journal?
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u Britanskom medicinskom časopisu?
01:13
Don't most science-savvy people
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Zar većina stručnjaka ne zna
01:15
know that the theory
that vaccines cause autism is B.S.?
that vaccines cause autism is B.S.?
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da je teorija da cjepiva
uzrokuju autizam besmislena?
uzrokuju autizam besmislena?
01:19
I think most of you do,
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Mislim da većina vas zna,
01:21
but millions of parents worldwide
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no milijuni se roditelja diljem svijeta
01:23
continue to fear that vaccines
put their kids at risk for autism.
put their kids at risk for autism.
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i dalje boje da cjepiva njihovu djecu
podvrgavaju riziku od autizma.
podvrgavaju riziku od autizma.
01:28
Why?
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Zašto?
01:30
Here's why.
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Objasnit ću vam zašto.
01:32
This is a graph of autism
prevalence estimates rising over time.
prevalence estimates rising over time.
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Grafikon prikazuje procjenu učestalosti
autizma koja s vremenom raste.
autizma koja s vremenom raste.
01:37
For most of the 20th century,
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Većinu 20. stoljeća
01:39
autism was considered
an incredibly rare condition.
an incredibly rare condition.
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autizam se smatrao
iznimno rijetkom bolešću.
iznimno rijetkom bolešću.
01:43
The few psychologists and pediatricians
who'd even heard of it
who'd even heard of it
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Rijetki psiholozi i pedijatri
koji su uopće čuli za to
koji su uopće čuli za to
01:46
figured they would get through
their entire careers
their entire careers
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smatrali su kako tijekom
cijele svoje karijere
cijele svoje karijere
01:49
without seeing a single case.
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neće naići ni na jedan slučaj autizma.
01:52
For decades, the prevalence estimates
remained stable
remained stable
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Desetljećima se procjena
učestalosti zadržala
učestalosti zadržala
01:55
at just three or four children in 10,000.
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na troje ili četvero djece na 10 000.
01:58
But then, in the 1990s,
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Međutim, tijekom 1990-ih,
02:00
the numbers started to skyrocket.
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brojke su vrtoglavo počele rasti.
02:03
Fundraising organizations
like Autism Speaks
like Autism Speaks
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Organizacije za prikupljanje novca
poput "Autism Speaks"
poput "Autism Speaks"
02:06
routinely refer to autism as an epidemic,
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obično o autizmu govore kao o epidemiji,
02:09
as if you could catch it
from another kid at Disneyland.
from another kid at Disneyland.
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kao nešto čime biste se mogli zaraziti
preko drugog djeteta u Disneylandu.
preko drugog djeteta u Disneylandu.
02:13
So what's going on?
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Što se događa?
02:14
If it isn't vaccines, what is it?
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Ako se ne radi o cjepivima,
o čemu se onda radi?
o čemu se onda radi?
02:18
If you ask the folks down at
the Centers for Disease Control in Atlanta
the Centers for Disease Control in Atlanta
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Upitate li ljude iz centara
za nadzor bolesti iz Atlante
za nadzor bolesti iz Atlante
02:22
what's going on,
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što se događa,
02:23
they tend to rely on phrases like
"broadened diagnostic criteria"
"broadened diagnostic criteria"
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reći će vam nešto poput:
"prošireni dijagnostički kriteriji"
"prošireni dijagnostički kriteriji"
02:28
and "better case finding"
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i "bolje pronalaženje oboljelih"
02:30
to explain these rising numbers.
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kako bi objasnili porast oboljelih.
02:32
But that kind of language
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No, takav jezik
02:34
doesn't do much to allay
the fears of a young mother
the fears of a young mother
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ne pomaže puno ustrašenoj mladoj majci
02:37
who is searching her
two-year-old's face for eye contact.
two-year-old's face for eye contact.
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koja pokušava uspostaviti kontakt očima
sa svojom dvogodišnjom kćeri.
sa svojom dvogodišnjom kćeri.
02:42
If the diagnostic criteria
had to be broadened,
had to be broadened,
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Ako se dijagnostički kriterij proširio,
02:45
why were they so narrow
in the first place?
in the first place?
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zašto je uopće bio tako uzak?
02:48
Why were cases of autism
so hard to find
so hard to find
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Zašto je bilo tako teško
pronaći slučajeve autizma
pronaći slučajeve autizma
02:51
before the 1990s?
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prije 1990-ih?
02:53
Five years ago, I decided to try
to uncover the answers to these questions.
to uncover the answers to these questions.
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Prije pet godina odlučio sam
pronaći odgovore na ta pitanja.
pronaći odgovore na ta pitanja.
02:59
I learned that what happened
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Saznao sam da ono što se dogodilo
03:01
has less to do with the slow and cautious
progress of science
progress of science
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nema toliko veze sa sporim
i opreznim napretkom znanosti
i opreznim napretkom znanosti
03:05
than it does with the seductive
power of storytelling.
power of storytelling.
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koliko sa zavodljivom moći pričanja priča.
03:08
For most of the 20th century,
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Većinu 20. stoljeća
03:10
clinicians told one story
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liječnici su pričali priču
03:13
about what autism is
and how it was discovered,
and how it was discovered,
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o tome što je autizam
i kako su ga otkrili,
i kako su ga otkrili,
03:16
but that story turned out to be wrong,
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ali ta se priča pokazala pogrešnom
03:19
and the consequences of it
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i njezine posljedice
03:21
are having a devastating impact
on global public health.
on global public health.
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imaju razarajući učinak
na globalno javno zdravstvo.
na globalno javno zdravstvo.
03:25
There was a second,
more accurate story of autism
more accurate story of autism
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Postojala je i druga,
točnija priča o autizmu
točnija priča o autizmu
03:28
which had been lost and forgotten
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koja je izgubljena i zaboravljena
03:31
in obscure corners
of the clinical literature.
of the clinical literature.
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u skrivenim kutovima
liječničke literature.
liječničke literature.
03:34
This second story tells us everything
about how we got here
about how we got here
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Ta druga priča govori nam sve
o tome kako smo ovdje došli
o tome kako smo ovdje došli
03:38
and where we need to go next.
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i gdje tek trebamo poći.
03:41
The first story starts with a child
psychiatrist at Johns Hopkins Hospital
psychiatrist at Johns Hopkins Hospital
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Prva priča započinje u bolnici
Johns Hopkins s dječjim psihijatrom
Johns Hopkins s dječjim psihijatrom
03:45
named Leo Kanner.
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Leom Kannerom.
03:47
In 1943, Kanner published a paper
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Kanner je 1943. objavio članak
03:51
describing 11 young patients
who seemed to inhabit private worlds,
who seemed to inhabit private worlds,
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u kojem opisuje 11 mladih pacijenata
koji su živjeli u vlastitim svjetovima
koji su živjeli u vlastitim svjetovima
03:56
ignoring the people around them,
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i ignorirali ljude oko sebe,
03:58
even their own parents.
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pa čak i vlastite roditelje.
04:00
They could amuse themselves for hours
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Mogli su satima zabavljati sami sebe
04:02
by flapping their hands
in front of their faces,
in front of their faces,
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mašući rukama ispred lica,
04:05
but they were panicked by little things
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ali uspaničarili bi se zbog sitnica
04:07
like their favorite toy
being moved from its usual place
being moved from its usual place
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poput premještanja omiljene im igračke
s uobičajenog mjesta
s uobičajenog mjesta
04:10
without their knowledge.
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bez njihova znanja.
04:12
Based on the patients
who were brought to his clinic,
who were brought to his clinic,
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Na temelju pacijenata
dovedenih u tu kliniku,
dovedenih u tu kliniku,
04:15
Kanner speculated
that autism is very rare.
that autism is very rare.
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Kanner je pretpostavio
da je autizam iznimno rijedak.
da je autizam iznimno rijedak.
04:19
By the 1950s, as the world's
leading authority on the subject,
leading authority on the subject,
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Do 1950-ih, kao najveći svjetski
autoritet na tom području,
autoritet na tom području,
04:23
he declared that he had seen
less than 150 true cases of his syndrome
less than 150 true cases of his syndrome
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izjavio je da je vidio manje od 150
pravih slučajeva "njegova sindroma"
pravih slučajeva "njegova sindroma"
04:29
while fielding referrals from
as far away as South Africa.
as far away as South Africa.
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proučavajući osobe čak i iz Južne Afrike
za koje se sumnjalo da su autistične.
za koje se sumnjalo da su autistične.
04:33
That's actually not surprising,
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To zapravo ne iznenađuje
04:35
because Kanner's criteria
for diagnosing autism
for diagnosing autism
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jer je Kannerov kriterij
za dijagnoziranje autizma
za dijagnoziranje autizma
04:39
were incredibly selective.
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bio iznimno selektivan.
04:41
For example, he discouraged giving
the diagnosis to children who had seizures
the diagnosis to children who had seizures
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Npr. nije preporučivao postavljanje
dijagnoze djeci koja su patila od napadaja
dijagnoze djeci koja su patila od napadaja
04:46
but now we know that epilepsy
is very common in autism.
is very common in autism.
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iako sada znamo
da je epilepsija česta kod autizma.
da je epilepsija česta kod autizma.
04:50
He once bragged that he had turned
nine out of 10 kids
nine out of 10 kids
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Hvalio se kako je poslao kući
devet od desetero djece
devet od desetero djece
04:53
referred to his office as autistic
by other clinicians
by other clinicians
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upućene mu od strane drugih liječnika
pod sumnjom bolovanja od autizma
pod sumnjom bolovanja od autizma
04:57
without giving them an autism diagnosis.
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bez postavljanja dijagnoze autizma.
05:00
Kanner was a smart guy,
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Kanner je bio pametan čovjek,
05:02
but a number of his theories
didn't pan out.
didn't pan out.
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no mnoge su njegove teorije propale.
05:05
He classified autism as a form
of infantile psychosis
of infantile psychosis
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Klasificirao je autizam
kao oblik infantilne psihoze
kao oblik infantilne psihoze
05:08
caused by cold and unaffectionate parents.
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koju uzrokuju hladni
i nebrižni roditelji.
i nebrižni roditelji.
05:12
These children, he said,
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Izjavio je da su takva djeca
05:14
had been kept neatly
in a refrigerator that didn't defrost.
in a refrigerator that didn't defrost.
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uredno spremljena u zamrzivač
koji nije imao funkciju odmrzavanja.
koji nije imao funkciju odmrzavanja.
05:19
At the same time, however,
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No, ujedno je
05:21
Kanner noticed that some
of his young patients
of his young patients
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Kanner primijetio da neki
od njegovih mladih pacijenata
od njegovih mladih pacijenata
05:24
had special abilities
that clustered in certain areas
that clustered in certain areas
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imaju posebne sposobnosti
na određenim područjima
na određenim područjima
05:27
like music, math and memory.
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poput glazbe, matematike i pamćenja.
05:30
One boy in his clinic
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Jedan dječak u njegovoj klinici
05:32
could distinguish between 18 symphonies
before he turned two.
before he turned two.
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do druge godine života mogao je
raspoznati 18 različitih simfonija.
raspoznati 18 različitih simfonija.
05:37
When his mother put on
one of his favorite records,
one of his favorite records,
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Kad bi majka stavila jednu
od najdražih mu ploča,
od najdražih mu ploča,
05:40
he would correctly declare,
"Beethoven!"
"Beethoven!"
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točno bi uskliknuo: "Beethoven!"
05:43
But Kanner took a dim view
of these abilities,
of these abilities,
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No, Kanner nije prihvaćao te sposobnosti,
05:46
claiming that the kids
were just regurgitating things
were just regurgitating things
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već je smatrao da ta djeca samo ponavljaju
05:50
they'd heard their pompous parents say,
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ono što su čula od
svojih pompoznih roditelja
svojih pompoznih roditelja
05:52
desperate to earn their approval.
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u očajničkoj čežnji
za njihovim odobravanjem.
za njihovim odobravanjem.
05:55
As a result, autism became
a source of shame and stigma for families,
a source of shame and stigma for families,
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Posljedično, autizam je za obitelji
postao izvor srama i stigme
postao izvor srama i stigme
06:00
and two generations of autistic children
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i dvije generacije autistične djece
06:03
were shipped off to institutions
for their own good,
for their own good,
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poslane su u institucije
za vlastito dobro,
za vlastito dobro,
06:06
becoming invisible to the world at large.
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time postajući nevidljive cijelom svijetu.
06:10
Amazingly, it wasn't until the 1970s
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Začudo, tek su 1970-ih
06:14
that researchers began to test
Kanner's theory that autism was rare.
Kanner's theory that autism was rare.
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istraživači počeli propitivati Kannerovu
teoriju o neučestalosti autizma.
teoriju o neučestalosti autizma.
06:19
Lorna Wing was a cognitive
psychologist in London
psychologist in London
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Lorna Wing, kognitivna
psihologinja iz Londona,
psihologinja iz Londona,
06:23
who thought that Kanner's theory
of refrigerator parenting
of refrigerator parenting
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smatrala je Kannerovu teoriju
o zamrzivačkom stilu roditeljstva,
o zamrzivačkom stilu roditeljstva,
06:26
were "bloody stupid," as she told me.
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kako mi je rekla, "prokleto glupom".
06:29
She and her husband John were warm
and affectionate people,
and affectionate people,
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Ona i njezin muž John
bili su topli i brižni roditelji
bili su topli i brižni roditelji
06:33
and they had a profoundly
autistic daughter named Susie.
autistic daughter named Susie.
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iznimno autistične djevojčice Susie.
06:37
Lorna and John knew how hard it was
to raise a child like Susie
to raise a child like Susie
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Lorna i John znali su koliko je teško
odgajati dijete poput Susie
odgajati dijete poput Susie
06:41
without support services,
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bez usluga podrške,
06:43
special education,
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posebne edukacije
06:45
and the other resources that are
out of reach without a diagnosis.
out of reach without a diagnosis.
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i drugih resursa koji su
nedostupni bez dijagnoze.
nedostupni bez dijagnoze.
06:49
To make the case
to the National Health Service
to the National Health Service
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Kako bi Nacionalnoj
zdravstvenoj službi dokazali
zdravstvenoj službi dokazali
06:52
that more resources were needed
for autistic children and their families,
for autistic children and their families,
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da je više resursa potrebno
za autističnu djecu i njihove obitelji,
za autističnu djecu i njihove obitelji,
06:57
Lorna and her colleague Judith Gould
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Lorna i njezina kolegica Judith Gould
06:59
decided to do something that should
have been done 30 years earlier.
have been done 30 years earlier.
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odlučile su se na nešto što se
trebalo napraviti prije trideset godina.
trebalo napraviti prije trideset godina.
07:04
They undertook a study of autism
prevalence in the general population.
prevalence in the general population.
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Provele su istraživanje o učestalosti
autizma širom opće populacije.
autizma širom opće populacije.
07:09
They pounded the pavement
in a London suburb called Camberwell
in a London suburb called Camberwell
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Pješačile su Camberwellom,
londonskim predgrađem,
londonskim predgrađem,
07:13
to try to find autistic children
in the community.
in the community.
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u potrazi za autističnom
djecom u tom naselju.
djecom u tom naselju.
07:17
What they saw made clear
that Kanner's model was way too narrow,
that Kanner's model was way too narrow,
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Opaženo im je razbistrilo
ograničenost Kannerova modela,
ograničenost Kannerova modela,
07:21
while the reality of autism
was much more colorful and diverse.
was much more colorful and diverse.
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a autističku stvarnost učinilo
raznobojnijom i raznolikijom.
raznobojnijom i raznolikijom.
07:26
Some kids couldn't talk at all,
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Neka djeca uopće nisu mogla govoriti
07:28
while others waxed on at length
about their fascination with astrophysics,
about their fascination with astrophysics,
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dok su druga nadugačko i naširoko pričala
o svojoj fasciniranosti astrofizikom,
o svojoj fasciniranosti astrofizikom,
07:33
dinosaurs or the genealogy of royalty.
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dinosaurima ili rodoslovlju
kraljevske obitelji.
kraljevske obitelji.
07:37
In other words, these children
didn't fit into nice, neat boxes,
didn't fit into nice, neat boxes,
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Drugim riječima, ta djeca nisu pripadala
lijepim, točno određenim kategorijama,
lijepim, točno određenim kategorijama,
07:42
as Judith put it,
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kako ih je Judith nazvala,
07:43
and they saw lots of them,
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a viđali su ih puno,
07:45
way more than Kanner's monolithic model
would have predicted.
would have predicted.
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puno više nego što je Kannerov
monolitni model previđao.
monolitni model previđao.
07:49
At first, they were at a loss
to make sense of their data.
to make sense of their data.
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Isprva nisu uspijevale pronaći
smisao u prikupljenim podatcima.
smisao u prikupljenim podatcima.
07:53
How had no one noticed
these children before?
these children before?
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Kako tu djecu nitko dosad nije primijetio?
07:56
But then Lorna came upon a reference
to a paper that had been published
to a paper that had been published
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No, onda je Lorna naišla
na referencu na članak objavljen
na referencu na članak objavljen
07:59
in German in 1944,
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1944. u Njemačkoj,
08:02
the year after Kanner's paper,
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godinu dana nakon Kannerova članka
08:04
and then forgotten,
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i koji je zatim pao u zaborav,
08:06
buried with the ashes of a terrible time
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zakopan uz pepeo užasnog vremena
08:09
that no one wanted to remember
or think about.
or think about.
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kojega se nitko nije htio
niti prisjećati niti razmišljati o njemu.
niti prisjećati niti razmišljati o njemu.
08:12
Kanner knew about this competing paper,
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Kanner je znao
za taj suprotstavljeni članak,
za taj suprotstavljeni članak,
08:15
but scrupulously avoided
mentioning it in his own work.
mentioning it in his own work.
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ali svjesno ga je odbio
spomenuti u vlastitom radu.
spomenuti u vlastitom radu.
08:19
It had never even
been translated into English,
been translated into English,
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Taj članak nikad
nije preveden na engleski,
nije preveden na engleski,
08:22
but luckily, Lorna's husband spoke German,
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no srećom, Lornin muž govorio je njemački,
08:25
and he translated it for her.
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pa joj ga je preveo.
08:27
The paper offered
an alternate story of autism.
an alternate story of autism.
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Članak je ponudio
drugačiju priču o autizmu.
drugačiju priču o autizmu.
08:31
Its author was a man named Hans Asperger,
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Autor članka bio je Hans Asperger,
08:34
who ran a combination clinic
and residential school
and residential school
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voditelj kombinirane klinike
i škole s učeničkim domom
i škole s učeničkim domom
08:37
in Vienna in the 1930s.
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u Beču 1930-ih.
08:40
Asperger's ideas about teaching children
with learning differences
with learning differences
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Aspergerove ideje o učenju
djece sa specifičnostima u učenju
djece sa specifičnostima u učenju
08:44
were progressive even
by contemporary standards.
by contemporary standards.
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bile su progresivne
čak i za suvremene standarde.
čak i za suvremene standarde.
08:47
Mornings at his clinic began
with exercise classes set to music,
with exercise classes set to music,
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Jutra u njegovoj klinici
započinjala su vježbom uz glazbu,
započinjala su vježbom uz glazbu,
08:51
and the children put on plays
on Sunday afternoons.
on Sunday afternoons.
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a djeca su nedjeljom popodne
organizirala predstave.
organizirala predstave.
08:55
Instead of blaming parents
for causing autism,
for causing autism,
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Umjesto da je okrivljavao
roditelje za autizam,
roditelje za autizam,
08:58
Asperger framed it as a lifelong,
polygenetic disability
polygenetic disability
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Asperger je autizam definirao
kao poligenetički invaliditet
kao poligenetički invaliditet
09:03
that requires compassionate forms
of support and accommodations
of support and accommodations
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koji zahtijeva suosjećajne oblike
podrške i prilagođavanja
podrške i prilagođavanja
09:07
over the course of one's whole life.
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tijekom cijelog životnog vijeka.
09:10
Rather than treating the kids
in his clinic like patients,
in his clinic like patients,
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Umjesto da je djecu u klinici
tretirao kao pacijente,
tretirao kao pacijente,
09:13
Asperger called them
his little professors,
his little professors,
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on ih je nazivao svojim malim profesorima
09:16
and enlisted their help in developing
methods of education
methods of education
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te tražio njihovu pomoć
u razvijanju metoda u obrazovanju
u razvijanju metoda u obrazovanju
09:20
that were particularly suited to them.
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posebno prilagođenih njima.
09:22
Crucially, Asperger viewed autism
as a diverse continuum
as a diverse continuum
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Ključno je to što je Asperger autizam
promatrao na kontinuumu raznolikosti
promatrao na kontinuumu raznolikosti
09:28
that spans an astonishing range
of giftedness and disability.
of giftedness and disability.
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koji obuhvaća nevjerojatan
raspon od darovitosti do nesposobnosti.
raspon od darovitosti do nesposobnosti.
09:33
He believed that autism
and autistic traits are common
and autistic traits are common
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Vjerovao je da su autizam
i značajke autizma uobičajene
i značajke autizma uobičajene
09:37
and always have been,
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i da su oduvijek bile takve
09:38
seeing aspects of this continuum
in familiar archetypes from pop culture
in familiar archetypes from pop culture
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jer su aspekti tog kontinuuma vidljivi
u poznatim arhetipovima popularne kulture
u poznatim arhetipovima popularne kulture
09:44
like the socially awkward scientist
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poput društveno
neprilagođenog znanstvenika
neprilagođenog znanstvenika
09:46
and the absent-minded professor.
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2694
i duhom odsutnog profesora.
09:49
He went so far as to say,
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Čak je rekao
09:51
it seems that for success
in science and art,
in science and art,
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da je za uspjeh u znanosti i umjetnosti
09:54
a dash of autism is essential.
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nužna doza autizma.
09:58
Lorna and Judith realized that Kanner
had been as wrong about autism being rare
had been as wrong about autism being rare
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Lorna i Judith shvatile su da je Kanner
krivo pretpostavio da je autizam rijedak,
krivo pretpostavio da je autizam rijedak,
10:03
as he had been about parents causing it.
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2693
kao što je i krivo pretpostavio
da su mu uzrok roditelji.
da su mu uzrok roditelji.
10:05
Over the next several years,
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Tijekom sljedećih nekoliko godina
10:07
they quietly worked with
the American Psychiatric Association
the American Psychiatric Association
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u tišini su surađivale s Američkom
udrugom za psihijatriju
udrugom za psihijatriju
10:11
to broaden the criteria for diagnosis
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2600
kako bi proširile kriterij za dijagnozu
10:13
to reflect the diversity of what
they called "the autism spectrum."
they called "the autism spectrum."
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koji bi odražavao raznolikost onoga
što je nazvao "autističnim spektrom".
što je nazvao "autističnim spektrom".
10:17
In the late '80s and early 1990s,
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Kasnih 80-ih i ranih 90-ih
10:20
their changes went into effect,
189
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2298
te su promjene stupile na snagu
10:22
swapping out Kanner's narrow model
190
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2369
zamjenjujući Kannerov uzak model
10:25
for Asperger's broad and inclusive one.
191
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3575
Aspergerovim širokim
i uključujućim modelom.
i uključujućim modelom.
10:28
These changes weren't
happening in a vacuum.
happening in a vacuum.
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2671
Te se promjene nisu događale u vakuumu.
10:31
By coincidence, as Lorna and Judith
worked behind the scenes
worked behind the scenes
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Sasvim slučajno, dok su
Lorna i Judith u tajnosti radile
Lorna i Judith u tajnosti radile
10:35
to reform the criteria,
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na reformi kriterija,
10:37
people all over the world were seeing
an autistic adult for the first time.
an autistic adult for the first time.
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ljudi diljem svijeta po prvi su put
gledali odraslog autista.
gledali odraslog autista.
10:42
Before "Rain Man" came out in 1988,
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Prije nego što je 1988.
izašao "Kišni čovjek",
izašao "Kišni čovjek",
10:45
only a tiny, ingrown circle of experts
knew what autism looked like,
knew what autism looked like,
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samo je malen krug stručnjaka
znao kako izgleda autizam.
znao kako izgleda autizam.
10:50
but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt
performance as Raymond Babbitt
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No, nakon što je Hoffmanova neponovljiva
interpretacija Raymonda Babbitta
interpretacija Raymonda Babbitta
10:54
earned "Rain Man" four Academy Awards,
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"Kišnom čovjeku" zaradila četiri Oscara,
10:58
pediatricians, psychologists,
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pedijatri, psiholozi,
11:00
teachers and parents all over the world
knew what autism looked like.
knew what autism looked like.
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učitelji i roditelji diljem svijeta
znali su kako izgleda autizam.
znali su kako izgleda autizam.
11:05
Coincidentally, at the same time,
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Igrom slučaja, u to isto vrijeme
11:08
the first easy-to-use clinical tests
for diagnosing autism were introduced.
for diagnosing autism were introduced.
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pojavili su se prvi testovi za dijagnozu
autizma jednostavni za korištenje.
autizma jednostavni za korištenje.
11:13
You no longer had to have a connection
to that tiny circle of experts
to that tiny circle of experts
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Više vam nije trebala veza
do malog kruga stručnjaka
do malog kruga stručnjaka
11:18
to get your child evaluated.
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kako bi vaše dijete dobilo procjenu.
11:21
The combination of "Rain Man,"
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Kombinacija "Kišnog čovjeka",
11:23
the changes to the criteria,
and the introduction of these tests
and the introduction of these tests
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promjena u kriteriju i pojava tih testova
11:27
created a network effect,
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stvorili su mrežni učinak,
11:29
a perfect storm of autism awareness.
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savršenu oluju svijesti o autizmu.
11:33
The number of diagnoses started to soar,
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Broj dijagnoza vinuo se u nebesa,
11:36
just as Lorna and Judith predicted,
indeed hoped, that it would,
indeed hoped, that it would,
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baš kao što su Lorna i Judith predvidjele,
točnije baš kao što su se nadale da hoće,
točnije baš kao što su se nadale da hoće,
11:41
enabling autistic people
and their families
and their families
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što je autistima
i obiteljima autista pomoglo
i obiteljima autista pomoglo
11:44
to finally get the support
and services they deserved.
and services they deserved.
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dobiti zasluženu podršku i usluge.
11:47
Then Andrew Wakefield came along
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2066
Zatim se pojavio Andrew Wakefield
11:49
to blame the spike
in diagnoses on vaccines,
in diagnoses on vaccines,
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3855
i za taj je porast okrivio cjepiva.
11:53
a simple, powerful,
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2113
Bila je to jednostavna, moćna
11:55
and seductively believable story
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2786
i zamamno vjerojatna priča
11:58
that was as wrong as Kanner's theory
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2368
pogrešna gotovo kao i Kannerova teorija
12:00
that autism was rare.
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2253
o neučestalosti autizma.
12:03
If the CDC's current estimate,
220
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3471
Ako je točna trenutna pretpostavka CDC-a
12:06
that one in 68 kids in America
are on the spectrum, is correct,
are on the spectrum, is correct,
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4423
da je svako 68. dijete
u Americi na ovom spektru,
u Americi na ovom spektru,
12:11
autistics are one of the largest
minority groups in the world.
minority groups in the world.
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autisti su jedna od najvećih
manjinskih grupa u svijetu.
manjinskih grupa u svijetu.
12:15
In recent years, autistic people
have come together on the Internet
have come together on the Internet
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Nedavnih godina autisti
su se ujedinili na internetu
su se ujedinili na internetu
12:19
to reject the notion that they
are puzzles to be solved
are puzzles to be solved
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kako bi opovrgnuli vjerovanje da su
oni tek zagonetke koje treba riješiti
oni tek zagonetke koje treba riješiti
12:22
by the next medical breakthrough,
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sljedeće otkriće u medicini
12:24
coining the term "neurodiversity"
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te pritom stvarajući
pojam "neuroraznolikosti"
pojam "neuroraznolikosti"
12:27
to celebrate the varieties
of human cognition.
of human cognition.
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kako bi slavili razlike
u ljudskoj kogniciji.
u ljudskoj kogniciji.
12:31
One way to understand neurodiversity
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2391
Jedan od načina
razumjevanja neuroraznolikosti
razumjevanja neuroraznolikosti
12:33
is to think in terms
of human operating systems.
of human operating systems.
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uključuje razmišljanje u kontekstu
ljudskih operativnih sustava.
ljudskih operativnih sustava.
12:37
Just because a P.C. is not running Windows
doesn't mean that it's broken.
doesn't mean that it's broken.
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To što računalo nema Windowse,
ne znači da to računalo ne valja.
ne znači da to računalo ne valja.
12:42
By autistic standards,
the normal human brain
the normal human brain
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Prema autističkim standardima
normalom ljudskom mozgu
normalom ljudskom mozgu
12:45
is easily distractable,
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2020
lako je odvući pažnju,
12:47
obsessively social,
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1788
pretjerano je društven
12:49
and suffers from a deficit
of attention to detail.
of attention to detail.
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te pati od manjka pažnje za detalje.
12:52
To be sure, autistic people
have a hard time
have a hard time
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2995
Autistima je teško
12:55
living in a world not built for them.
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2276
živjeti u svijetu nenamijenjenom za njih.
12:58
[Seventy] years later, we're still
catching up to Asperger,
catching up to Asperger,
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Sedamdeset godina kasnije
još uvijek tek sustižemo Aspergera
još uvijek tek sustižemo Aspergera
13:02
who believed that the "cure"
for the most disabling aspects of autism
for the most disabling aspects of autism
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4083
koji je vjerovao da se "lijek" za
najograničavajuće aspekte autizma
najograničavajuće aspekte autizma
13:06
is to be found in understanding teachers,
239
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2926
može pronaći u učiteljima
prepunim razumijevanja,
prepunim razumijevanja,
13:09
accommodating employers,
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2136
prilagodljivim poslodavcima,
13:11
supportive communities,
241
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1857
podržavajućim zajednicama
13:13
and parents who have faith
in their children's potential.
in their children's potential.
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3344
i roditeljima koji vjeruju
u potencijal svoje djece.
u potencijal svoje djece.
13:16
An autistic woman
named Zosia Zaks once said,
named Zosia Zaks once said,
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3042
Autistična žena Zosia Zaks
jednom je prilikom izjavila:
jednom je prilikom izjavila:
13:19
"We need all hands on deck
to right the ship of humanity."
to right the ship of humanity."
244
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"Treba nam pomoć svih da ispravimo
put na kojem se našlo čovječanstvo."
put na kojem se našlo čovječanstvo."
13:25
As we sail into an uncertain future,
245
793211
2553
Dok plovimo prema nesigurnoj budućnosti,
13:27
we need every form
of human intelligence on the planet
of human intelligence on the planet
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3738
svaki oblik ljudske inteligencije
na planetu treba
na planetu treba
13:31
working together to tackle
the challenges that we face as a society.
the challenges that we face as a society.
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zajedničkim naporima svladati izazove
s kojima se kao društvo suočavamo.
s kojima se kao društvo suočavamo.
13:37
We can't afford to waste a brain.
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Ne možemo si priuštiti
da izgubimo ijedan mozak.
da izgubimo ijedan mozak.
13:39
Thank you.
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Hvala.
13:42
(Applause)
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(Pljesak)
ABOUT THE SPEAKER
Steve Silberman - Writer and editorSteve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius.
Why you should listen
Steve Silberman is a writer and contributing editor for Wired and other national magazines. In 2001, he published "The Geek Syndrome," one of the first articles in the mainstream press to probe the complex relationship between autism and genius. The article was praised by experts in the field like neurologist Oliver Sacks and author Temple Grandin, but as time went on, Silberman was haunted by the biggest question that he had left unanswered: Why have rates of autism diagnosis increased so steeply in the past 30 years?
This question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.
A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.
More profile about the speakerThis question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.
A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.
Steve Silberman | Speaker | TED.com