What it's really like to have autism | Ethan Lisi

1,068,935 views ・ 2020-04-29

TED


Please double-click on the English subtitles below to play the video.

Prevodilac: Marko Milanovic Lektor: Ivana Korom
00:13
Autism is something that many people know about.
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Autizam je nešto o čemu dosta ljudi zna.
00:19
For example, some people think
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Na primer, neki ljudi misle
00:21
that autistic people are fair-skinned males
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da su autistični ljudi muške osobe svetle puti
00:26
that speak in monotone
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koje pričaju monotonim glasom
00:28
and constantly go on and on about the same topic.
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i konstantno vrte jednu te istu temu.
00:33
Some people think that autistic people do not know right from wrong,
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Neki ljudi misle da autistični ljudi ne mogu da razaznaju dobro od lošeg,
00:38
avoid attention
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da izbegavaju pažnju
00:39
and usually say the wrong thing at the wrong time.
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i da uglavnom kažu pogrešnu stvar u pogrešnom trenutku.
00:43
Some people think that autistic people are socially awkward
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Neki ljudi misle da su autistični ljudi društveno nespretni
00:48
and lack humor and empathy.
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i da nemaju smisao za humor i empatiju.
00:51
Now if you agree with what I just said,
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Sad, ako se slažete sa ovim što sam sad rekao,
00:55
I'm sorry to tell you,
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žao mi je što ću vam reći,
00:56
but you do not have the right impression of autism.
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ali imate pogrešno shvatanje autizma.
01:00
How do I know?
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Kako to znam?
01:02
Because I have autism.
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Zato što ja imam autizam.
01:06
I do have my own obsessions with things like electronics
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I ja imam opsesije stvarima kao što je elektronika
01:11
and public transit,
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ili javni prevoz,
01:13
but that does not define me.
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ali me to ne definiše.
01:16
Each of us are different and unique in our own way.
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Svako od nas je različit i jedinstven na sebi svojstven način.
01:21
However, there is not a lot of information out there
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Međutim, ne postoji dovoljno informacija
01:24
on what an autistic life actually looks like,
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o tome kako zapravo izgleda život autistične osobe,
01:28
so people often resort to stereotypes.
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pa ljudi uglavnom pribegavaju stereotipima.
01:31
And we see these often in the media.
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Često ih viđamo i u medijima.
01:34
Some of the more common stereotypes in the media
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Neki od učestalijih stereotipa u medijima
01:38
include being socially awkward,
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uključuju to da smo društveno nespretni,
01:40
lacking empathy
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da imamo manjak empatije
01:42
and even being a supergenius.
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čak i da smo supergeniji.
01:47
And the lack of knowledge on autism doesn't stop there either.
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Ali nedovoljno znanje o autizmu se ne završava tu.
01:52
Did you know that some people are trying to find a cure for autism?
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Da li ste znali da neki ljudi pokušavaju da nađu lek za autizam?
01:56
That's because they see it as a negative thing,
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To je zato što ga vide kao nešto negativno,
01:58
as a disease.
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kao bolest.
02:00
Many people are challenging the idea
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Mnogi preispituju ovu ideju
02:03
and to us, we think autism is not a disease.
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ali mi, mi ne mislimo da je autizam bolest.
02:08
It's just another way of thinking and looking at the world.
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To je samo još jedan način razmišljanja i pogleda na svet.
02:12
Our brains function differently from most people's brains.
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Naši mozgovi funkcionišu drugačije od većine ljudskih mozgova.
02:16
Think of it like comparing and Xbox and a PlayStation.
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Mislite na to kao da poredite Iksboks i Plejstejšn.
02:19
They're both highly capable consoles with different programming.
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I jedna i druga su vrlo podobne konzole programirane na različite načine.
02:24
But if you put your Xbox game in a PlayStation,
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Ali kada biste ubacili Iksboks igricu u Plejstejšn
02:28
it won't work, because the PlayStation communicates differently.
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ne bi radila, jer Plejstejšn komunicira na drugačiji način.
02:37
When I look in the mirror,
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Kada se pogledam u ogledalo,
02:38
I see someone who thinks differently.
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ja vidim nekog ko razmišlja drugačije.
02:40
Oh, and I also see nice hair.
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O, takođe vidim i lepu frizuru.
02:42
(Laughter)
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(Smeh)
02:44
(Applause)
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(Aplauz)
02:51
But the question is,
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Ali pitanje je
02:53
am I really diseased if I just think differently?
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da li sam ja bolestan samo zato što razmišljam drugačije?
03:00
The main problem with living autistic in today's society
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Glavni problem života sa autizmom u današnjem društvu
03:05
is that the world just isn't built for us.
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je taj da svet jednostavno nije napravljen za nas.
03:08
There's so many ways that we can get overwhelmed.
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Postoji mnogo načina da se uznemirimo.
03:12
For example,
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Na primer,
03:14
the thing that makes me overwhelmed all the time is loud noises,
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ono što me stalno uznemiri jesu glasni zvuci,
03:19
which means I never crank up my music really loud
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što znači da nikad ne odvrćem muziku
03:22
and I usually am not a fan of large parties.
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i uglavnom nisam fan velikih žurki.
03:27
But other people on the spectrum might get overwhelmed
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Ali druge ljude mogu uznemiriti stvari
03:30
with things like bright lights or strong smells
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kao što su jaka svetla ili mirisi
03:34
or gooey textures
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ili stvari gnjecave teksture,
03:36
that all have the potential to create anxiety.
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sve to potencijalno može izazvati anksioznost.
03:40
Think about all of the social gatherings you've been to in the past.
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Prisetite se svih društvenih okupljanja na kojima ste bili u prošlosti.
03:46
Was there loud music playing?
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Da li se puštala glasna muzika?
03:48
Were there really bright lights?
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Da li su svetla bila jaka?
03:51
Were there lots of different food smells going on at the same time?
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Da li ste mogli da osetite mnogo različitih mirisa hrane u isto vreme?
03:56
Were there lots of conversations happening all at once?
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Da li se mnogo razgovora odvijalo u isto vreme?
04:01
Those things may not have bothered you guys,
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Te stvari možda vama nisu smetale,
04:03
but for someone with autism,
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ali nekoga sa autizmom,
04:06
they can be quite overwhelming.
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one mogu uznemiriti.
04:09
So in those situations, we do something called stimming,
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Tako da mi u tim situacijama radimo nešto što se zove stiming,
04:15
which is like a repetitive motion or a noise
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što je nešto poput repetitivnog pokreta ili zvuka
04:18
or some other random fidgeting that may or may not seem normal.
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ili neko drugo nasumično uzvrpoljavanje koje može ili ne izgledati normalno.
04:24
Some people will flap their arms
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Neki će mlatarati rukama
04:27
or make a noise or spin.
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ili proizvoditi zvukove ili se vrteti.
04:32
Ya, it's basically our way of zoning out.
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Da, to je manje-više naš način da se isključimo.
04:36
It can often feel necessary for us to stim.
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Mi često možemo osetiti potrebu za stimovanjem.
04:39
However, it's often frowned upon,
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Međutim, ono uglavnom naiđe na osudu,
04:43
and we're forced to hide it.
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i mi smo primorani da to sakrivamo.
04:45
When we're forced to hide our autistic traits like this,
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Kada smo na takav način primorani da prikrivamo naše autistične crte
04:49
it's called masking.
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to se naziva maskiranje.
04:53
And some people mask better than others.
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A neki se maskiraju bolje od drugih.
04:56
I mask so well sometimes that people don't even know I'm autistic
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Nekada se maskiram tako dobro da ljudi i ne znaju da sam autističan
05:02
until I give them the big reveal. (Laughs)
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dok im ne priredim veliko otkriće. (Smeh)
05:08
But at the end of the day, it gets really stressful.
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Ali na kraju dana, postane poprilično stresno.
05:11
Even something like doing my homework at night
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Čak i nešto poput domaćeg rada uveče
05:14
becomes very tiring.
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postane veoma zamarajuće.
05:17
Some people think,
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Neki ljudi misle,
05:21
because of our ability to mask,
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da zbog moje sposobnosti da se maskiram,
05:23
that this is the cure to autism.
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da je ovo lek za autizam.
05:25
However, all it really does is makes us ashamed
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Međutim, ono što zapravo jeste, jeste osećaj sramote
05:28
of showing our true selves.
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zbog prikazivanja našeg pravog ja.
05:35
Another common stereotype that is often associated with autism
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Još jedan čest stereotip koji se često dovodi u vezu sa autizmom
05:40
is that autistic people lack empathy.
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jeste da autistični ljudi imaju manjak empatije.
05:44
And again, this is not true.
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Još jednom, to nije istina.
05:47
I actually have lots of empathy.
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Ja zapravo imam mnogo empatije.
05:49
I'm just not really good at showing it.
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Samo je ne pokazujem toliko dobro.
05:52
Whenever a friend is trying to tell me
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Kad god prijatelj pokušava da mi priča
05:55
some of the struggles that they're going through,
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o nekim problemima kroz koje prolazi
05:57
I often don't know how to express my reply.
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ja često ne znam kako da odgovorim.
06:01
And that is why I don't show as much empathy
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I zato ne pokazujem onoliku empatiju
06:03
as my nonautistic friends do.
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koju pokazuju moji prijatelji koji nisu autistični.
06:09
Emotional expression, however much or however little,
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Emocionalni izraz, bilo veliki ili mali
06:13
is difficult for me.
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teško mi pada.
06:15
And that is because I am bursting inside
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A to je zato što iznutra pucam od svake emocije
06:18
with every single emotion one feels at all times.
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koju neko može da oseća u bilo kom trenutku.
06:23
Though of course, I cannot express it that way.
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Naravno, ja je ne mogu izraziti na takav način.
06:26
Otherwise, let's say, happiness, for example,
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U suprotnom, na primer,
sreća ne bi ispala kao neko veselo ispuštanje krika,
06:31
would come out as a huge burst of gleeful wheezing,
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06:34
hand flapping and loud vocal "woohoos."
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mlataranje rukama i glasno "vuhu".
06:37
(Laughter)
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(Smeh)
06:40
Whereas you may just smile.
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Dok se vi možete samo nasmejati.
06:41
(Laughter)
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(Smeh)
06:45
Whether it be receiving an awesome birthday gift
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Bilo da je u pitanju sjajan rođendanski poklon
06:49
or listening to a tragic story on the news,
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ili slušanje tragične priče na vestima,
06:55
I cannot really express my reply without bursting,
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ja ne mogu da se izrazim bez nekakvog praska,
06:59
so once again, I have to mask it in order to appear normal.
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tako da, još jednom, moram da ga maskiram kako bih izgledao normalan.
07:05
My inner feelings are unlimited,
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Moja unutrašnja osećanja su neograničena,
07:08
but my mind only lets me express extremes or nothing.
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ali mi moj um dozvoljava da izrazim sve ili ništa.
07:15
So my ...
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Dakle moje...
07:17
I am not great with my emotions,
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Ja nisam dobar sa emocijama,
07:21
and I communicate differently,
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i komuniciram drugačije
07:24
and because of that, I was diagnosed with autism spectrum disorder.
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i zbog toga, dijagnostikovan mi je spektar autističnih poremećaja.
07:30
This diagnosis helps me and my friends and family
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Ova dijagnoza pomaže meni i mojim prijateljima i porodici,
07:34
to know how my mind works.
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da razumemo kako moj um radi.
07:39
And in the world,
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I u svetu,
07:40
approximately one percent of the population
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otprilike jednom procentu populacije
07:43
is diagnosed with autism spectrum disorder.
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dijagnostikovan je spektar autističnih poremećaja.
07:47
And this number is growing.
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I ovaj broj se povećava.
07:49
However, we are still a big minority.
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Međutim, još uvek smo velika manjina.
07:53
And there's still lots of people that do not see us as equals
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I dalje postoje ljudi koji nas ne vide kao jednake.
07:56
to other people.
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08:00
This is my family.
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Ovo je moja porodica.
08:02
And in my family,
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I u mojoj porodici postoji
08:05
there is one other person who is also autistic.
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još jedna osoba koja ima autizam.
08:10
My mother.
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Moja majka.
08:11
Yes, adult women can also be autistic.
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Da, i odrasle žene mogu biti autistične.
08:16
My dad and my brother are both nonautistic.
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Moj otac i brat nemaju autizam.
08:20
Sometimes it can be a bit difficult for us to communicate with each other,
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Međutim, ponekad nam bude teško da komuniciramo jedni sa drugima.
08:25
however.
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08:27
Sometimes I'll say something like,
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Nekad ja kažem nešto tipa
08:29
"Oh, Toronto's Union Station, right?"
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"O, železnička stanica u Torontu, zar ne?"
08:32
thinking that I can
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misleći da mogu
08:36
help them to remember certain aspects of it.
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da im pomognem da se sete određenih apekata vezanih za to.
08:39
When they get confused, I often have to elaborate myself on that.
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Kada se zbune, često moram da elaboriram na tu temu.
08:46
And we often have to say things
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I često moramo da pričamo o stvarima
08:49
in a number of different ways so that everyone understands.
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na više različitih načina kako bi se svi razumeli.
08:54
However, despite all that,
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Međutim, uprkos svemu tome
08:55
we all love each other and respect each other as equals.
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mi se volimo i poštujemo jedni druge kao da smo jednaki.
09:00
In his book "NeuroTribes,"
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U njegovoj knjizi "NeuroTribes"
09:02
author Steve Silberman states that autism and other mental conditions
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autor Stiv Silberman kaže da bi autizam i ostala mentalna stanja
09:08
should be seen as naturally human,
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trebalo da se posmatraju kao nešto što je prirodno ljudski,
09:11
naturally part of a human spectrum
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što je prirodan deo ljudskog spektra,
09:14
and not as defects.
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a ne kao defekt.
09:16
And this is something that I agree to completely.
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I ovo je nešto sa čime se potpuno slažem.
09:20
If autism was seen as part of a natural human spectrum,
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Kada bi se autizam posmatrao kao delom prirodnog ljudskog sepektra,
09:25
then the world could be designed to work better for autistic people.
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onda bi svet mogao biti formiran tako da bude pogodniji za autistične.
09:32
I am not ashamed of my autism.
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Ja se ne stidim svoj autizma.
09:36
And I may not think like you,
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I možda ne mislim kao vi,
09:39
or act like you,
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ili se ne ponašam kao vi,
09:40
but I am still human and I am not diseased.
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ali sam i dalje živo biće i nisam bolestan.
09:45
Thank you.
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Hvala.
09:46
(Applause)
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(Aplauz)
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