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Carina Morillo: To understand autism, don't look away
Carina Morillo: Ak chceme pochopiť autizmus, nesmieme odvracať pohľad
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Carina Morillo nevedela o autizme takmer nič, keď ho jej synovi Ivanovi diagnostikovali. Vedela len to, že nerozprával a nereagoval na slová a že musela nájsť iný spôsob, ako sa s ním spojiť. Rozpráva, ako sa naučila pomáhať synovi rozvíjať sa tým, že bola zvedavá spolu s ním.
Carina Morillo - Autism advocate
Carina Morillo is an advocate for the social inclusion of people with autism. Full bio
Carina Morillo is an advocate for the social inclusion of people with autism. Full bio
Double-click the English transcript below to play the video.
00:13
"Look at me!"
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„Pozri sa na mňa.“
00:16
That phrase turned me
into an eye-contact coach.
into an eye-contact coach.
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Táto veta zo mňa urobila
trénerku očného kontaktu.
trénerku očného kontaktu.
00:22
I'm the mother of Ivan; he's 15 years old.
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Som matkou Ivana, má 15 rokov.
00:26
Ivan has autism,
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Ivan je autista,
00:28
he doesn't speak,
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nerozpráva
00:30
and he communicates through an iPad,
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a komunikuje sa prostredníctvom iPadu,
00:32
where his whole universe of words
exists in images.
exists in images.
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v ktorom má celý svoj vesmír slov
v podobe obrázkov.
v podobe obrázkov.
00:37
He was diagnosed
when he was two and a half.
when he was two and a half.
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Autizmus mu bol diagnostikovaný,
keď mal dva a pol roka.
keď mal dva a pol roka.
00:43
I still remember that day painfully.
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Stále si na ten deň bolestne spomínam.
00:49
My husband and I felt really lost;
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Môj muž a ja sme sa cítili
naozaj stratene,
naozaj stratene,
00:53
we didn't know where to begin.
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nevedeli sme, kde začať.
00:56
There was no internet,
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Nebol žiaden internet ako dnes,
00:59
you couldn't Google information,
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nedalo sa „googliť“ informácie,
takže sme prvé kroky
robili čisto intuitívne.
robili čisto intuitívne.
01:02
so we made those first steps
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01:05
out of sheer intuition.
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01:09
Ivan would not maintain eye contact,
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Ivan neudržiaval očný kontakt,
01:13
he had lost the words that he did know,
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prestal používať slová, ktoré už vedel,
01:16
and he didn't respond to his name
or to anything we asked him,
or to anything we asked him,
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a nereagoval na meno ani žiadne prosby,
01:21
as if words were noise.
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akoby slová boli len šum.
01:25
The only way I could know
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Jediný spôsob, ako zistiť,
01:30
what was going on with him,
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čo sa s ním dialo,
01:32
what he felt,
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čo cítil,
01:34
was looking him in the eye.
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bolo pozrieť sa mu do očí.
01:37
But that bridge was broken.
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Toto spojenie sa ale pretrhlo.
01:42
How could I teach him about life?
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Ako som ho mohla naučiť žiť?
01:47
When I did things he liked,
he would look at me,
he would look at me,
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Keď som spravila niečo, čo sa mu páčilo,
pozrel sa na mňa
pozrel sa na mňa
01:51
and we were connected.
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a boli sme prepojení.
01:53
So I dedicated myself
to working with him on those things,
to working with him on those things,
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Tak som si zaumienila opakovať po ňom,
01:57
so we would have more and more
eye-contact moments.
eye-contact moments.
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aby sme mali stále viac a viac
očného kontaktu.
očného kontaktu.
02:03
We would spend hours and hours playing tag
with his older sister, Alexia,
with his older sister, Alexia,
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Trávili sme hodiny a hodiny hraním sa
na naháňačku s jeho
staršou sestrou, Alexiou,
staršou sestrou, Alexiou,
02:10
and when we said: "I caught you!"
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a keď sme povedali: „Mám ťa!“
02:14
he would look around for us,
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porozhliadal sa po nás
02:16
and at that moment,
I could feel he was alive.
I could feel he was alive.
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a v tom momente som cítila, že je nažive.
02:25
We also hold a record for hours spent
in a swimming pool.
in a swimming pool.
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Okrem toho držíme rekord v počte
hodín strávených v bazéne.
hodín strávených v bazéne.
02:31
Ivan always had a passion for water.
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Voda bola vždy Ivanovou veľkou vášňou.
02:35
I remember when he was two and a half,
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Pamätám sa, keď mal dva a pol roka,
02:39
on a rainy winter day,
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v jeden veľmi upršaný zimný deň
02:43
I was taking him to an indoor pool,
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som ho vzala do krytého bazéna,
02:45
because even on rainy days
we'd go swimming.
we'd go swimming.
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pretože aj počas daždivých dní
sme chodievali plávať.
sme chodievali plávať.
02:49
We were on the highway,
and I took the wrong exit.
and I took the wrong exit.
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Boli sme na diaľnici a zle som odbočila.
02:54
He burst into tears and cried
inconsolably, nonstop,
inconsolably, nonstop,
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Začal neutíšiteľne plakať a neprestal,
02:58
until I turned back.
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až kým som sa neotočila.
03:00
Only then did he calm down.
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Až potom sa upokojil.
03:03
How was it possible
that a two and a half year old
that a two and a half year old
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Ako je možné, že dva a pol ročný
03:07
didn't respond to his own name,
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nereagoval na vlastné meno,
03:09
yet in the middle of the rain and fog,
where I couldn't see anything,
where I couldn't see anything,
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a predsa uprostred dažďa a hmly,
kde ja som nič nevidela,
kde ja som nič nevidela,
03:13
he knew the exact route?
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poznal presne cestu?
03:21
That's when I realized that Ivan
had an exceptional visual memory,
had an exceptional visual memory,
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Vtedy som si uvedomila,
že Ivan má výnimočnú vizuálnu pamäť
že Ivan má výnimočnú vizuálnu pamäť
03:25
and that that would be my way in.
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a že tá bude moja cesta k nemu.
03:29
So I started taking
pictures of everything,
pictures of everything,
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Tak som začala všetko fotiť
03:32
and teaching him what life was like,
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a učila ho, aký je život,
03:35
showing it to him, picture by picture.
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ukazovala som mu ho fotku za fotkou.
03:39
Even now, it's the way Ivan communicates
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Dodnes Ivan vyjadruje týmto spôsobom,
03:44
what he wants,
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čo chce,
03:46
what he needs
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čo potrebuje
03:48
and also what he feels.
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a tiež čo cíti.
03:54
But it wasn't just
Ivan's eye contact that mattered.
Ivan's eye contact that mattered.
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Ale nebol to len Ivanov očný kontakt,
na ktorom záležalo.
na ktorom záležalo.
03:58
Everyone else's did, too.
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Aj očný kontakt ostatných bol dôležitý.
04:02
How could I make people see
not only his autism,
not only his autism,
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Ako som mohla ľudí priviesť k tomu,
aby nevideli len jeho autizmus,
aby nevideli len jeho autizmus,
04:06
but see him the person
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ale aby ho videli ako človeka
04:09
and everything he can give;
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so všetkým, čo dokáže dávať,
04:12
everything he can do;
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všetkým, čo dokáže urobiť,
04:15
the things he likes and doesn't like,
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vecami, ktoré má a nemá rád,
04:18
just like any one of us?
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tak ako my ostatní?
04:21
But for that, I also had
to give of myself.
to give of myself.
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Ale pre to všetko som aj ja
musela dať kúsok zo seba.
musela dať kúsok zo seba.
04:25
I had to have the strength to let him go,
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Musela som nájsť silu nechať ho ísť,
04:28
which was extremely difficult.
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čo bolo strašne ťažké.
04:33
Ivan was 11 years old,
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Ivan mal 11 rokov
04:35
and he went for treatment
in a neighborhood near our house.
in a neighborhood near our house.
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a chodieval sa liečiť do inej
mestskej časti, neďaleko domu.
mestskej časti, neďaleko domu.
04:40
One afternoon,
while I was waiting for him,
while I was waiting for him,
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Jedno poobedie, kým som na neho čakala,
04:44
I went into a greengrocer,
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som vošla do zelovocu,
04:46
a typical neighborhood store
with a little bit of everything.
with a little bit of everything.
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typického miestneho zelovocu
s troškou tovaru každého druhu.
s troškou tovaru každého druhu.
04:50
While doing the shopping,
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Kým som nakupovala,
04:52
I started talking to Jose, the owner.
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prihovorila som sa Josému, majiteľovi.
04:56
I told him about Ivan,
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Porozprávala som mu o Ivanovi,
04:59
that he had autism,
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že je autista
05:01
and that I wanted him to learn
to walk down the street by himself,
to walk down the street by himself,
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a že by som chcela, aby sa naučil
ísť sám po ulici bez toho,
ísť sám po ulici bez toho,
05:05
without anyone holding his hand.
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aby ho niekto viedol za ruku.
05:08
So I decided to ask Jose
if Thursdays around 2pm,
if Thursdays around 2pm,
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Tak som sa rozhodla opýtať Josého,
či by každý štvrtok okolo 14-tej
či by každý štvrtok okolo 14-tej
05:13
Ivan could come and help him arrange
the water bottles on the shelves,
the water bottles on the shelves,
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nemohol Ivan prísť a pomôcť mu
usporiadať fľaše s vodou na regáloch,
usporiadať fľaše s vodou na regáloch,
05:17
because he loved to organize things.
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pretože zbožňuje usporadúvať veci.
05:19
And as a reward, he could buy
some chocolate cookies,
some chocolate cookies,
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Ako odmenu si mohol kúpiť
čokoládové sušienky,
čokoládové sušienky,
05:23
which were his favorite.
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ktoré sú jeho obľúbené.
05:27
He said "yes" right away.
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Bez zaváhania mi povedal „áno“.
05:30
So that's how it went for a year:
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A takto to šlo rok:
05:34
Ivan would go to Jose's greengrocer,
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Ivan chodieval do Josého zelovocu,
05:37
help him arrange the shelves
of water bottles
of water bottles
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pomáhal mu usporadúvať fľaše v regáloch
05:40
with the labels perfectly
lined up on the same side,
lined up on the same side,
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do radu s perfektne zarovnanými etiketami,
05:46
and he would leave happy
with his chocolate cookies.
with his chocolate cookies.
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a vždy spokojne odišiel
s čokoládovými sušienkami.
s čokoládovými sušienkami.
05:56
Jose is not an expert in autism.
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José nie je odborník na autizmus.
06:01
There is no need to be an expert
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Nie je potrebné byť odborník na nič
06:05
nor do anything heroic to include someone.
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alebo urobiť hrdinský čin,
aby sme niekoho zapojili.
aby sme niekoho zapojili.
06:12
We just need to be there --
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Musíme tam len byť.
06:14
(Applause)
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(potlesk)
06:22
(Applause ends)
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06:25
Really, no heroic deed --
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Naozaj, žiadny hrdinský čin.
06:28
we simply need to be close.
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Musíme len byť nablízku.
06:33
And if we are afraid of something
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A keď sa niečoho bojíme
06:36
or we don't understand something,
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alebo niečomu nerozumieme,
06:38
we need to ask.
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musíme sa opýtať.
06:41
Let's be curious
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Buďme zvedaví,
06:44
but never indifferent.
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ale nikdy nie ľahostajní.
06:50
Let's have the courage
to look each other in the eye,
to look each other in the eye,
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Majme odvahu pozrieť sa
jeden druhému do očí,
jeden druhému do očí,
06:56
because by looking,
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pretože pohľadom
06:58
we can open a whole world to someone else.
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môžeme pre druhého otvoriť celý svet.
07:03
(Applause)
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(potlesk)
07:05
(Cheers)
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(výskot)
ABOUT THE SPEAKER
Carina Morillo - Autism advocateCarina Morillo is an advocate for the social inclusion of people with autism.
Why you should listen
Carina Morillo is a founding member and president of Fundación Brincar, a non-profit organization in Argentina that has worked since 2010 for a better quality of life of people with autism and their families.
Morillo started Fundación Brincar -- inspired by her son Ivan, who is currently 16 years old and has autism -- because she strongly believes that although life with autism can be challenging, her family and others like it have the right to be happy. In spite of its high prevalence, most people still don't know what autism is about or how to help someone with autism. The foundation offers support services and training to families and professionals, community awareness programs and art and skills training for children, youth and adults on the autism spectrum. Brincar has trained more than 15,000 professionals and families, and it currently offers support services to more than 3,000 families throughout Argentina. The foundation's free virtual library monthly reaches 400,000 people per month throughout Latin America and Spain. Brincar is also founding member of the Argentina Network of Autism, and has become one of the leading autism references for both families, health professionals and teachers in Argentina and Latin America.
Morillo is actively working on the creation of an adult life platform for living with autism. Like many parents, her main concern is who will take care of her son during his adult life. Around one-third of people with autism remain nonverbal, and one-third have an intellectual disability, requiring 24/7 support throughout their life. Existing facilities and services in Argentina and Latin America are limited to school age, with no residence or occupation solutions for anyone older than 18.
Morillo has been awarded the 2016 US Ambassador in Argentina Entrepreneur Prize and the 2014 Argentine Solidarity Prize. In April 2017, Fundación Brincar was declared of Social Interest by the Congress of the City of Buenos Aires for its open community services. Morillo holds a BS in Business Administration degree of Babson College.
Carina Morillo | Speaker | TED.com