TED2015
Steve Silberman: The forgotten history of autism
Steve Silberman: Pozabljena zgodovina avtizma
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Pred nekaj desetletji so le redki pediatri poznali avtizem. Leta 1975 so ocenjevali, da ga ima le 1 na 5 000 otrok. Danes ima 1 na 68 otrok eno izmed motenj avtističnega spektra. Kaj je povzročilo ta strm porast? Steve Silberman nas opozarja na sunkovit porast ozaveščenosti o avtizmu, ki so ga povzročili nepričakovan trenutek v pop kulturi, dve zdravnici, ki sta predlagali bolj sprejemljivo razlago za avtizem in novi klinični testi. Ampak, da bi res razumeli kaj se je zgodilo, se moramo vrniti še dlje v preteklost, do avstrijskega zdravnika po imenu Hand Asperger, ki je leta 1944 objavil pionirski članek. Ker smo na ta članek pozabili, je bilo naše razumevanje avtizma napačno. (To predavanje je bilo del TED2015 seje, ki jo je organizirala revija Pop-Up, dostopna na popupmagazine.com ali @popupmag na Twitterju.)
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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Lani po božiču
00:15
132 kids in California got the measles
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je 132 otrok v Kaliforniji
zbolelo za ošpicami,
zbolelo za ošpicami,
00:19
by either visiting Disneyland
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po tem ko so obiskali Disneyland
00:21
or being exposed to someone
who'd been there.
who'd been there.
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ali bili v stiku s kom, ki je bil tam.
00:24
The virus then hopped the Canadian border,
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Virus je prečkal kanadsko mejo
00:27
infecting more than
100 children in Quebec.
100 children in Quebec.
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in okužil več kot 100 otrok v Quebecu.
00:30
One of the tragic things
about this outbreak
about this outbreak
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Eno izmed tragičnih dejstev
o tem izbruhu je,
o tem izbruhu je,
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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da so ošpice, ki so lahko smrtonosne
za otroke z oslabelim imunskim sistemom,
za otroke z oslabelim imunskim sistemom,
00:39
is one of the most easily
preventable diseases in the world.
preventable diseases in the world.
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ena izmed najlažje
preprečljivih bolezni na svetu.
preprečljivih bolezni na svetu.
00:43
An effective vaccine against it
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Učinkovito cepivo za ošpice
00:45
has been available for more
than half a century,
than half a century,
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poznamo že več kot pol stoletja,
00:48
but many of the kids involved
in the Disneyland outbreak
in the Disneyland outbreak
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ampak otroci, ki so zboleli med
izbruhom v Disneylandu,
izbruhom v Disneylandu,
00:51
had not been vaccinated
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niso bili cepljeni,
00:53
because their parents were afraid
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ker so se njihovi starši bali
00:56
of something allegedly even worse:
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domnevno se strašnejše bolezni:
00:59
autism.
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avtizma.
01:00
But wait -- wasn't the paper
that sparked the controversy
that sparked the controversy
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Ampak... Ali ni bil članek, ki je
sprožil polemike
sprožil polemike
01:04
about autism and vaccines
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o avtizmu in cepivih
01:06
debunked, retracted,
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ovržen, preklican
01:08
and branded a deliberate fraud
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in označen za namerno prevaro
01:11
by the British Medical Journal?
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v Britanski Medicinski reviji?
01:13
Don't most science-savvy people
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Ali večina znanstveno osveščenih ljudi
01:15
know that the theory
that vaccines cause autism is B.S.?
that vaccines cause autism is B.S.?
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ne ve, da je teorija o cepivih,
ki povzročajo avtizem bedarija?
ki povzročajo avtizem bedarija?
01:19
I think most of you do,
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Mislim, da večina izmed vas to ve,
01:21
but millions of parents worldwide
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ampak milijone staršev po svetu
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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je še strah, da bodo zaradi cepiv
njihovi otroci zboleli z avtizmom.
njihovi otroci zboleli z avtizmom.
01:28
Why?
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Zakaj?
01:30
Here's why.
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Zato.
01:32
This is a graph of autism
prevalence estimates rising over time.
prevalence estimates rising over time.
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Ta graf prikazuje višanje
prevalence avtizma skozi čas.
prevalence avtizma skozi čas.
01:37
For most of the 20th century,
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Skozi 20. stoletje
01:39
autism was considered
an incredibly rare condition.
an incredibly rare condition.
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je avtizem veljal
za izredno redko bolezen.
za izredno redko bolezen.
01:43
The few psychologists and pediatricians
who'd even heard of it
who'd even heard of it
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Redki psihologi in pediatri,
ki so sploh slišali zanjo,
ki so sploh slišali zanjo,
01:46
figured they would get through
their entire careers
their entire careers
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so menili, da v svoji celotni karieri
01:49
without seeing a single case.
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ne bodo videli niti enega samega primera.
01:52
For decades, the prevalence estimates
remained stable
remained stable
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Desetletja je bila prevalenca ocenjena
01:55
at just three or four children in 10,000.
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na tri ali štiri otroke na 10 000.
01:58
But then, in the 1990s,
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Ampak v 90. letih prejšnjega stoletja
02:00
the numbers started to skyrocket.
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je ta številka naglo porasla.
02:03
Fundraising organizations
like Autism Speaks
like Autism Speaks
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Dobrodelne organizacije kot Autism Speaks
(Avtizem Govori)
(Avtizem Govori)
02:06
routinely refer to autism as an epidemic,
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o avtizmu vedno znova govorijo
kot o epidemiji,
kot o epidemiji,
02:09
as if you could catch it
from another kid at Disneyland.
from another kid at Disneyland.
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kakor da se ga lahko nalezeš
od drugega otroka v Disenylandu.
od drugega otroka v Disenylandu.
02:13
So what's going on?
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Kaj se torej dogaja?
02:14
If it isn't vaccines, what is it?
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Če niso kriva cepiva, kaj je?
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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Če vprašate ljudi v Centru za
obvladovanje bolezni (COB) v Atlanti,
obvladovanje bolezni (COB) v Atlanti,
02:22
what's going on,
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kaj se dogaja,
02:23
they tend to rely on phrases like
"broadened diagnostic criteria"
"broadened diagnostic criteria"
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se zanašajo na fraze kot:
"razširjeni diagnostični kriteriji"
"razširjeni diagnostični kriteriji"
02:28
and "better case finding"
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in "učinkovitejše odkrivanje primerov"
02:30
to explain these rising numbers.
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za pojasnjevanje porasta
v številu avtističnih otrok.
v številu avtističnih otrok.
02:32
But that kind of language
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Ampak takšni odgovori
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 pomirijo strahu mlade matere,
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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ki se neuspešno trudi vzpostaviti
očesni stik s svojim dveletnikom.
očesni stik s svojim dveletnikom.
02:42
If the diagnostic criteria
had to be broadened,
had to be broadened,
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Če smo morali razširiti
diagnostične kriterije,
diagnostične kriterije,
02:45
why were they so narrow
in the first place?
in the first place?
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zakaj so bili prej tako ozki?
02:48
Why were cases of autism
so hard to find
so hard to find
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Zakaj je tako težko najti
opise primerov avtizma
opise primerov avtizma
02:51
before the 1990s?
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pred 90. leti 20. stoletja?
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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Pred petimi leti sem se odločil,
da bom našel odgovore na ta vprašanja.
da bom našel odgovore na ta vprašanja.
02:59
I learned that what happened
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Ugotovil sem, da to kar se je zgodilo,
03:01
has less to do with the slow and cautious
progress of science
progress of science
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ni toliko povezano s počasnim in
previdnim napredkom znanosti,
previdnim napredkom znanosti,
03:05
than it does with the seductive
power of storytelling.
power of storytelling.
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pač pa z močjo zapeljive pripovedi.
03:08
For most of the 20th century,
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Tekom 20. stoletja
03:10
clinicians told one story
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so kliniki pripovedovali le eno zgodbo,
03:13
about what autism is
and how it was discovered,
and how it was discovered,
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o tem kaj avtizem je
in kako so ga odkrili.
in kako so ga odkrili.
03:16
but that story turned out to be wrong,
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Ampak ta zgodba se je izkazala za napačno
03:19
and the consequences of it
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in posledice te napake
03:21
are having a devastating impact
on global public health.
on global public health.
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imajo poguben vpliv
na svetovno javno zdravje.
na svetovno javno zdravje.
03:25
There was a second,
more accurate story of autism
more accurate story of autism
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Obstaja še druga,
bolj pravilna zgodba o avtizmu,
bolj pravilna zgodba o avtizmu,
03:28
which had been lost and forgotten
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ki je bila izgubljena in pozabljena
03:31
in obscure corners
of the clinical literature.
of the clinical literature.
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v temnih kotičkih medicinske 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 zgodba nam govori o tem,
kako smo prisli do sem
kako smo prisli do sem
03:38
and where we need to go next.
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in k čemur moramo stremeti v prihodnosti.
03:41
The first story starts with a child
psychiatrist at Johns Hopkins Hospital
psychiatrist at Johns Hopkins Hospital
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Prva zgodba se začne s pediatričnim
psihiatrom v bolnisnici Johna Hopkinsa
psihiatrom v bolnisnici Johna Hopkinsa
03:45
named Leo Kanner.
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z imenom Leo Kanner.
03:47
In 1943, Kanner published a paper
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Leta 1943 je Kanner objavil članek,
03:51
describing 11 young patients
who seemed to inhabit private worlds,
who seemed to inhabit private worlds,
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v katerem je opisal 11 mladih pacientov,
ki so navidez živeli v lastnem svetu
ki so navidez živeli v lastnem svetu
03:56
ignoring the people around them,
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in ignorirali ljudi okoli sebe,
03:58
even their own parents.
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celo lastne starše.
04:00
They could amuse themselves for hours
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Cele ure so se lahko zabavali,
04:02
by flapping their hands
in front of their faces,
in front of their faces,
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tako da so si z rokami mahali pred obrazi.
04:05
but they were panicked by little things
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Ampak zlahka jih je zajela panika,
04:07
like their favorite toy
being moved from its usual place
being moved from its usual place
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na primer če so prestavili
njihovo najljubšo igračko,
njihovo najljubšo igračko,
04:10
without their knowledge.
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ne da bi jim povedali.
04:12
Based on the patients
who were brought to his clinic,
who were brought to his clinic,
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Glede na paciente, ki so
prihajali v njegovo kliniko,
prihajali v njegovo kliniko,
04:15
Kanner speculated
that autism is very rare.
that autism is very rare.
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je Kanner predvideval,
da je avtizem zelo redek.
da je avtizem zelo redek.
04:19
By the 1950s, as the world's
leading authority on the subject,
leading authority on the subject,
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V 50. letih je kot vodilni
svetovni strokovnjak na tem področju,
svetovni strokovnjak na tem področju,
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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naznanil, da je videl manj kot
150 primerov pravega avtizma,
150 primerov pravega avtizma,
04:29
while fielding referrals from
as far away as South Africa.
as far away as South Africa.
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čeprav so k njemu pošiljali otroke od
vsepovsod, celo iz Južnoafriške Republike.
vsepovsod, celo iz Južnoafriške Republike.
04:33
That's actually not surprising,
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To pravzaprav ni presenetljivo,
04:35
because Kanner's criteria
for diagnosing autism
for diagnosing autism
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saj so bili Kannerjevi diagnosticni
kriteriji za avtizem
kriteriji za avtizem
04:39
were incredibly selective.
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izredno selektivni.
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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Otrokom, ki so imeli epileptične napade,
je nerad postavil diagnozo avtizma,
je nerad postavil diagnozo avtizma,
04:46
but now we know that epilepsy
is very common in autism.
is very common in autism.
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čeprav danes vemo, da je epilepsija
zelo pogosta pri avtističnih pacientih.
zelo pogosta pri avtističnih pacientih.
04:50
He once bragged that he had turned
nine out of 10 kids
nine out of 10 kids
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Nekoč se je pohvalil, da je
9 izmed 10 otrok,
9 izmed 10 otrok,
04:53
referred to his office as autistic
by other clinicians
by other clinicians
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ki so jih k njemu napotili
drugi zdravniki,
drugi zdravniki,
04:57
without giving them an autism diagnosis.
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odpravil brez da bi jim
diagnosticiral avtizem.
diagnosticiral avtizem.
05:00
Kanner was a smart guy,
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Kanner je bil pameten moški,
05:02
but a number of his theories
didn't pan out.
didn't pan out.
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a veliko njegovih teorij je bilo napačnih.
05:05
He classified autism as a form
of infantile psychosis
of infantile psychosis
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Avtizem je klasificiral kot
obliko otroške psihoze,
obliko otroške psihoze,
05:08
caused by cold and unaffectionate parents.
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ki naj bi jo povzročili hladni
in neljubeči starši.
in neljubeči starši.
05:12
These children, he said,
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Rekel je, da so te otroke
05:14
had been kept neatly
in a refrigerator that didn't defrost.
in a refrigerator that didn't defrost.
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vzgajali v "hladilniku,
ki ga niso nikoli odtalili."
ki ga niso nikoli odtalili."
05:19
At the same time, however,
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Istočasno pa je
05:21
Kanner noticed that some
of his young patients
of his young patients
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Kanner opazil, da imajo nekateri
njegovi mlajši pacienti,
njegovi mlajši pacienti,
05:24
had special abilities
that clustered in certain areas
that clustered in certain areas
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posebne sposobnosti na določenih podrocjih
05:27
like music, math and memory.
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kot so glasba, matematika in spomin.
05:30
One boy in his clinic
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En deček v njegovi kliniki
05:32
could distinguish between 18 symphonies
before he turned two.
before he turned two.
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je razločil med 18 različnimi
simfonijami, preden je dopolnil dve leti.
simfonijami, preden je dopolnil dve leti.
05:37
When his mother put on
one of his favorite records,
one of his favorite records,
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Ko je mama zavrtela njegovo
priljubljeno ploščo,
priljubljeno ploščo,
05:40
he would correctly declare,
"Beethoven!"
"Beethoven!"
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je pravilno oznanil: "Beethoven!"
05:43
But Kanner took a dim view
of these abilities,
of these abilities,
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A Kanner teh sposobnosti ni odobraval
05:46
claiming that the kids
were just regurgitating things
were just regurgitating things
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in je trdil, da otroci le ponavljajo reči,
05:50
they'd heard their pompous parents say,
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ki so jih slišali od svojih
domišljavih staršev,
domišljavih staršev,
05:52
desperate to earn their approval.
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saj si želijo njihovega odobravanja.
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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Posledično je avtizem postal vir
sramote in stigme za družine
sramote in stigme za družine
06:00
and two generations of autistic children
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in dve generaciji avtističnih otrok,
06:03
were shipped off to institutions
for their own good,
for their own good,
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ki so jih poslali v institucije
"v njihovo lastno dobro,"
"v njihovo lastno dobro,"
06:06
becoming invisible to the world at large.
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sta postali nevidni za svet.
06:10
Amazingly, it wasn't until the 1970s
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Presenetljivo, so šele v
70. letih 20. stoletja
70. letih 20. stoletja
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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raziskovalci pričeli preverjati Kannerjevo
teorijo, da je avtizem redek.
teorijo, da je avtizem redek.
06:19
Lorna Wing was a cognitive
psychologist in London
psychologist in London
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Lorna Wing je bila kognitivna psihologinja
v Londonu
v Londonu
06:23
who thought that Kanner's theory
of refrigerator parenting
of refrigerator parenting
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in je menila, da je Kannerjeva teorija
o "hladni vzgoji"
o "hladni vzgoji"
06:26
were "bloody stupid," as she told me.
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izredno neumna.
06:29
She and her husband John were warm
and affectionate people,
and affectionate people,
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Z možem Johnom sta bila
topla, ljubeča človeka
topla, ljubeča človeka
06:33
and they had a profoundly
autistic daughter named Susie.
autistic daughter named Susie.
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in sta kljub temu imela hudo
avtistično hčer Susie.
avtistično hčer 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 in John sta vedela, kako težko
je vzgajati otroka kot je Susie
je vzgajati otroka kot je Susie
06:41
without support services,
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brez podpornih služb,
06:43
special education,
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posebne izobrazbe
06:45
and the other resources that are
out of reach without a diagnosis.
out of reach without a diagnosis.
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in ostalih sredstev, do katerih nimaš
dostopa brez postavljene diagnoze.
dostopa brez postavljene diagnoze.
06:49
To make the case
to the National Health Service
to the National Health Service
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Da bi lahko Nacionalno zdravstveno
sluzbo zaprosili
sluzbo zaprosili
06:52
that more resources were needed
for autistic children and their families,
for autistic children and their families,
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za več sredstev za avtistične
otroke in njihove družine,
otroke in njihove družine,
06:57
Lorna and her colleague Judith Gould
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sta se Lorna in njena sodelavka
Judith Gould
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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odločili, da bosta storili nekaj,
kar bi moralo biti narejeno pred 30 leti.
kar bi moralo biti narejeno pred 30 leti.
07:04
They undertook a study of autism
prevalence in the general population.
prevalence in the general population.
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Izvedli sta študijo o pogostosti
avtizma v splošni populaciji.
avtizma v splošni populaciji.
07:09
They pounded the pavement
in a London suburb called Camberwell
in a London suburb called Camberwell
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Preučevali sta Londonsko
predmestje Camberwell
predmestje Camberwell
07:13
to try to find autistic children
in the community.
in the community.
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in iskali avtistične otroke v skupnosti.
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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Njune ugotovitve, so jasno pokazale,
da je Kannerjev model preozek,
da je Kannerjev model preozek,
07:21
while the reality of autism
was much more colorful and diverse.
was much more colorful and diverse.
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saj je avtizem v resnici
zelo pester in raznolik.
zelo pester in raznolik.
07:26
Some kids couldn't talk at all,
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Nekateri otroci sploh niso mogli govoriti,
07:28
while others waxed on at length
about their fascination with astrophysics,
about their fascination with astrophysics,
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medtem ko so drugi neprestano govorili
o svoji prevzetosti z astrofiziko,
o svoji prevzetosti z astrofiziko,
07:33
dinosaurs or the genealogy of royalty.
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dinozavri ali genealogijo
kraljevih družin.
kraljevih družin.
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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Ali drugače povedano, teh otrok se
ni dalo enostavno popredalčkati,
ni dalo enostavno popredalčkati,
07:42
as Judith put it,
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kot se je izrazila Judith.
07:43
and they saw lots of them,
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In videli sta mnogo teh otrok,
07:45
way more than Kanner's monolithic model
would have predicted.
would have predicted.
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veliko več kot je predvideval
Kannerjev monolitični model.
Kannerjev monolitični model.
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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Sprva so ju njune najdbe zelo zmedle.
07:53
How had no one noticed
these children before?
these children before?
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Kako da teh otrok ni nihče
opazili že prej?
opazili že prej?
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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Potem pa je Lorna odkrila članek,
ki je bil obavljen
ki je bil obavljen
07:59
in German in 1944,
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v Nemčiji leta 1944,
08:02
the year after Kanner's paper,
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le leto po objavi Kannerjevega članka,
08:04
and then forgotten,
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in bil nato pozabljen,
08:06
buried with the ashes of a terrible time
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pokopan v pepelu grozovitih časov,
08:09
that no one wanted to remember
or think about.
or think about.
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ki se jih nihče ni želel spominjati
ali misliti nanje.
ali misliti nanje.
08:12
Kanner knew about this competing paper,
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Kanner je poznal članek svojega tekmeca,
08:15
but scrupulously avoided
mentioning it in his own work.
mentioning it in his own work.
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ampak ga namerno ni omenjal
v svojih lastnih publikacijah.
v svojih lastnih publikacijah.
08:19
It had never even
been translated into English,
been translated into English,
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Članka niso nikoli niti
prevedli v angleščino,
prevedli v angleščino,
08:22
but luckily, Lorna's husband spoke German,
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ampak na srečo je Lornin mož
govoril nemško
govoril nemško
08:25
and he translated it for her.
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in ga je prevedel zanjo.
08:27
The paper offered
an alternate story of autism.
an alternate story of autism.
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Članek je vseboval alternativno
zgodbo o avtizmu.
zgodbo o avtizmu.
08:31
Its author was a man named Hans Asperger,
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Avtor je bil Hans Asperger,
08:34
who ran a combination clinic
and residential school
and residential school
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ki je vodil kombinirano kliniko
in internatsko šolo
in internatsko šolo
08:37
in Vienna in the 1930s.
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na Dunaju v 30. letih 20. stoletja.
08:40
Asperger's ideas about teaching children
with learning differences
with learning differences
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Aspergerjeve ideje o poučevanju
otrok s posebnimi potrebami
otrok s posebnimi potrebami
08:44
were progressive even
by contemporary standards.
by contemporary standards.
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so bile progresivne celo po
današnjih standardih.
današnjih standardih.
08:47
Mornings at his clinic began
with exercise classes set to music,
with exercise classes set to music,
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Jutra so se v njegovi kliniki začenjala
s telovadbo ob glasbi,
s telovadbo ob glasbi,
08:51
and the children put on plays
on Sunday afternoons.
on Sunday afternoons.
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ob nedeljskih popoldnevih pa so otroci
uprizarjali gledališke predstave.
uprizarjali gledališke predstave.
08:55
Instead of blaming parents
for causing autism,
for causing autism,
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Namesto, da bi za razvoj
avtizma obtoževal starše,
avtizma obtoževal starše,
08:58
Asperger framed it as a lifelong,
polygenetic disability
polygenetic disability
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ga je Asperger označil
za doživljenjsko poligensko obolenje,
za doživljenjsko poligensko obolenje,
09:03
that requires compassionate forms
of support and accommodations
of support and accommodations
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ki zahteva sočutno podporo in prilagajanje
09:07
over the course of one's whole life.
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tekom celotnega življenja.
09:10
Rather than treating the kids
in his clinic like patients,
in his clinic like patients,
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Otrok v svoji kliniki ni
obravnaval kot paciente,
obravnaval kot paciente,
09:13
Asperger called them
his little professors,
his little professors,
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pač pa jih je klical
"moji mali profesorji"
"moji mali profesorji"
09:16
and enlisted their help in developing
methods of education
methods of education
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in z njihovo pomočjo razvijal
nove metode poučevanja,
nove metode poučevanja,
09:20
that were particularly suited to them.
171
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2484
ki so bile prilagojene zanje.
09:22
Crucially, Asperger viewed autism
as a diverse continuum
as a diverse continuum
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Ključno je, da je Asperger avtizem
videl kot raznolik spekter,
videl kot raznolik spekter,
09:28
that spans an astonishing range
of giftedness and disability.
of giftedness and disability.
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ki vključuje izredno velik razpon
nadarjenosti in nezmožnosti.
nadarjenosti in nezmožnosti.
09:33
He believed that autism
and autistic traits are common
and autistic traits are common
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Verjel je, da so avtizem
in avtistične značilnosti pogoste
in avtistične značilnosti pogoste
09:37
and always have been,
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in so tudi vedno bile,
09:38
seeing aspects of this continuum
in familiar archetypes from pop culture
in familiar archetypes from pop culture
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5294
saj je te značilnosti prepoznal v znanih
arhetipih iz pop kulture,
arhetipih iz pop kulture,
09:44
like the socially awkward scientist
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2336
npr. arhetip družabno
nespretnega znanstvenika
nespretnega znanstvenika
09:46
and the absent-minded professor.
178
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2694
in zmedenega profesorja.
09:49
He went so far as to say,
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2113
Šel je celo tako daleč, da je trdil,
09:51
it seems that for success
in science and art,
in science and art,
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3227
da je za uspeh v znanosti in umetnosti
09:54
a dash of autism is essential.
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potreben kanček avtizma.
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 in Judith sta spoznali, da se
je Kanner motil tako o pogostosti avtizma,
je Kanner motil tako o pogostosti avtizma,
10:03
as he had been about parents causing it.
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2693
kakor tudi o njegovem vzroku.
10:05
Over the next several years,
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2044
V naslednjih letih
10:07
they quietly worked with
the American Psychiatric Association
the American Psychiatric Association
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595951
3413
sta na skrivaj sodelovali
z Ameriško psihiatrično asociacijo,
z Ameriško psihiatrično asociacijo,
10:11
to broaden the criteria for diagnosis
186
599364
2600
da bi razširili kriterije za diagnozo,
10:13
to reflect the diversity of what
they called "the autism spectrum."
they called "the autism spectrum."
187
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4017
tako da bi odražali raznovrstnost tega,
čemur danes pravimo "avtistični spekter."
čemur danes pravimo "avtistični spekter."
10:17
In the late '80s and early 1990s,
188
605981
2578
V poznih 80. in zgodnjih 90. 20. stoletja
10:20
their changes went into effect,
189
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2298
so njune spremembe postale veljavne
10:22
swapping out Kanner's narrow model
190
610857
2369
in so zamenjale Kannerjev ozek model,
10:25
for Asperger's broad and inclusive one.
191
613226
3575
z Aspergerjevim širokim in vključujočim.
10:28
These changes weren't
happening in a vacuum.
happening in a vacuum.
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2671
A te spremembe se niso dogajale v vakumu.
10:31
By coincidence, as Lorna and Judith
worked behind the scenes
worked behind the scenes
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3854
Po naključju so takrat, ko sta
Lorna in Judith v zakulisju
Lorna in Judith v zakulisju
10:35
to reform the criteria,
194
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1834
izboljševali kriterije,
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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625160
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ljudje po celem svetu prvič videli
avtistično odraslo osebo.
avtistično odraslo osebo.
10:42
Before "Rain Man" came out in 1988,
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3374
Pred izidom filma Deževni mož leta 1988,
10:45
only a tiny, ingrown circle of experts
knew what autism looked like,
knew what autism looked like,
197
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4659
je samo majhen krog strokovnjakov
vedel, kako avtizem izgleda.
vedel, kako avtizem izgleda.
10:50
but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt
performance as Raymond Babbitt
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638209
4760
Po nepozabnem nastopu Dustina Hoffmana
v vlogi Raymonda Babbitta,
v vlogi Raymonda Babbitta,
10:54
earned "Rain Man" four Academy Awards,
199
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3135
ki je filmu prislužil štiri Oskarje,
10:58
pediatricians, psychologists,
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646104
2740
so pediatri, psihologi,
11:00
teachers and parents all over the world
knew what autism looked like.
knew what autism looked like.
201
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4690
učitelji in starši po vsem svetu
vedeli kako izgleda avtizem.
vedeli kako izgleda avtizem.
11:05
Coincidentally, at the same time,
202
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2925
Po naključju so istočasno
11:08
the first easy-to-use clinical tests
for diagnosing autism were introduced.
for diagnosing autism were introduced.
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5130
uvedli tudi prve preproste klinične teste
za diagnostiko avtizma.
za diagnostiko avtizma.
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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Ni bilo več potrebno biti povezan z
majhnim krogom strokovnjakov za avtizem,
majhnim krogom strokovnjakov za avtizem,
11:18
to get your child evaluated.
205
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2578
da bi bil tvoj otrok pregledan.
11:21
The combination of "Rain Man,"
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2113
Kombinacija Deževnega moža,
11:23
the changes to the criteria,
and the introduction of these tests
and the introduction of these tests
207
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4179
spremenjenih kriterijev
in uvedbe novih testov
in uvedbe novih testov
11:27
created a network effect,
208
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2275
je povzročila efekt snežne krogle
11:29
a perfect storm of autism awareness.
209
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3530
in velik porast ozaveščenosti o avtizmu.
11:33
The number of diagnoses started to soar,
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3018
Število diagnoz je sunkovito poraslo,
11:36
just as Lorna and Judith predicted,
indeed hoped, that it would,
indeed hoped, that it would,
211
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5668
kakor sta Lorna in Judith
predvideli in upali,
predvideli in upali,
11:41
enabling autistic people
and their families
and their families
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2116
in omogočilo avtistom in njihovim družinam
11:44
to finally get the support
and services they deserved.
and services they deserved.
213
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3692
dostop do sredstev in podpore,
ki so jo zaslužili.
ki so jo zaslužili.
11:47
Then Andrew Wakefield came along
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695798
2066
Nato pa se je pojavil Andrew Wakefield
11:49
to blame the spike
in diagnoses on vaccines,
in diagnoses on vaccines,
215
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3855
in za porast v številu
diagnoz okrivil cepiva.
diagnoz okrivil cepiva.
11:53
a simple, powerful,
216
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2113
Njegova zgodba je preprosta, vplivna
11:55
and seductively believable story
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2786
in zapeljivo prepričljiva,
11:58
that was as wrong as Kanner's theory
218
706618
2368
vendar zmotna, tako kot
Kannerjeva teorija,
Kannerjeva teorija,
12:00
that autism was rare.
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2253
da je avtizem redek.
12:03
If the CDC's current estimate,
220
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3471
Če je COB-jeva ocena,
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 ima eden na 68 ameriških otrok
motnjo avtističnega spektra, pravilna,
motnjo avtističnega spektra, pravilna,
12:11
autistics are one of the largest
minority groups in the world.
minority groups in the world.
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potem so avtistični ljudje ena izmed
največjih svetovnih manjšin.
največjih svetovnih manjšin.
12:15
In recent years, autistic people
have come together on the Internet
have come together on the Internet
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V zadnjih letih so se avtistični ljudje
povezali preko interneta,
povezali preko interneta,
12:19
to reject the notion that they
are puzzles to be solved
are puzzles to be solved
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3645
da bi oporekali predstavi, da so uganke,
ki jih moramo rešiti
ki jih moramo rešiti
12:22
by the next medical breakthrough,
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2183
z novim medicinskim prebojem.
12:24
coining the term "neurodiversity"
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2461
Skovali so pojem "nevro-raznolikost,"
12:27
to celebrate the varieties
of human cognition.
of human cognition.
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3288
da bi proslavili pestrost
človeške kognicije.
človeške kognicije.
12:31
One way to understand neurodiversity
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2391
Nevro-raznolikost si lahko
predstavljamo kot
predstavljamo kot
12:33
is to think in terms
of human operating systems.
of human operating systems.
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3669
človeške operacijske sisteme.
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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4916
Če naš računalnik ne uporablja
OS Windows, še ne pomeni, da je pokvarjen.
OS Windows, še ne pomeni, da je pokvarjen.
12:42
By autistic standards,
the normal human brain
the normal human brain
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3629
Z avtističnega stališča so
normalni človeški možgani
normalni človeški možgani
12:45
is easily distractable,
232
753869
2020
zlahka odvrnljivi,
12:47
obsessively social,
233
755889
1788
pretirano socialno usmerjeni
12:49
and suffers from a deficit
of attention to detail.
of attention to detail.
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3320
in premalo pozorni na podrobnosti.
12:52
To be sure, autistic people
have a hard time
have a hard time
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2995
Seveda je avtističnim ljudem težko
12:55
living in a world not built for them.
236
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2276
živeti na svetu, ki ni prilagojen zanje.
12:58
[Seventy] years later, we're still
catching up to Asperger,
catching up to Asperger,
237
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4252
Sedemdeset let po njegovem članku, še
vedno nismo na isti ravni kot Asperger,
vedno nismo na isti ravni kot Asperger,
13:02
who believed that the "cure"
for the most disabling aspects of autism
for the most disabling aspects of autism
238
770520
4083
ki je verjel, da so "zdravilo" za še tako
onesposabljajoče vidike avtizma
onesposabljajoče vidike avtizma
13:06
is to be found in understanding teachers,
239
774603
2926
razumevajoči učitelji,
13:09
accommodating employers,
240
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2136
prilagodljivi delodajalci,
13:11
supportive communities,
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1857
podpirajoče skupnosti
13:13
and parents who have faith
in their children's potential.
in their children's potential.
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3344
in starši, ki verjamejo
v otrokov potencial.
v otrokov potencial.
13:16
An autistic woman
named Zosia Zaks once said,
named Zosia Zaks once said,
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3042
Avtistična ženska Zosia Zaks,
je nekoč rekla:
je nekoč rekla:
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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5303
"Vsi moramo sodelovati pri obračanju
ladje človeštva v pravo smer."
ladje človeštva v pravo smer."
13:25
As we sail into an uncertain future,
245
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2553
Ko plovemo v neznano prihodnost,
13:27
we need every form
of human intelligence on the planet
of human intelligence on the planet
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795764
3738
morajo vse oblike inteligence
na tem planetu
na tem planetu
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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5967
sodelovati pri spoprijemanju z izzivi,
s katerimi se sooča naša družba.
s katerimi se sooča naša družba.
13:37
We can't afford to waste a brain.
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2322
Vsi možgani so za nas nepogrešljivi.
13:39
Thank you.
249
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2345
Hvala
13:42
(Applause)
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810136
4000
(Aplavz)
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