TEDxRiodelaPlata
Carina Morillo: To understand autism, don't look away
Carina Morillo: Ha meg akarja érteni az autizmust, ne nézzen félre!
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Carina Morillo szinte semmit sem tudott az autizmusról, amikor fiát, Ivánt diagnosztizálták. Annyit tudott, hogy a kicsi nem beszél, nem reagál a szavakra, és hogy meg kell találnia a módját, hogy kapcsolatba lépjen vele. Carina elmeséli, miként tanulta meg – közös kíváncsiságukra alapozva- – hogyan segítse fiát az érvényesülésben.
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.
Nézz a szemembe!
00:13
"Look at me!"
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00:16
That phrase turned me
into an eye-contact coach.
into an eye-contact coach.
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Ezekkel a szavakkal lettem nézésedző.
A 15 éves Iván édesanyja vagyok.
00:22
I'm the mother of Ivan; he's 15 years old.
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00:26
Ivan has autism,
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Iván autista, nem beszél,
00:28
he doesn't speak,
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egy iPaden keresztül kommunikálunk vele,
00:30
and he communicates through an iPad,
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00:32
where his whole universe of words
exists in images.
exists in images.
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amely egész szókincsét képekben mutatja.
Két és fél éves volt,
00:37
He was diagnosed
when he was two and a half.
when he was two and a half.
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amikor megkaptuk a diagnózist,
és még most is
00:43
I still remember that day painfully.
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mély fájdalommal gondolok arra a percre.
A férjem és én is
00:49
My husband and I felt really lost;
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nagyon elveszettnek éreztük magunkat.
Nem tudtuk, mihez kezdjünk.
00:53
we didn't know where to begin.
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Akkor még nem volt internet, mint most,
00:56
There was no internet,
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nem lehetett ráguglizni,
00:59
you couldn't Google information,
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így az első lépések megtételénél
01:02
so we made those first steps
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csak a megérzésünkre hagyatkozhattunk.
01:05
out of sheer intuition.
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Iván nem viselte el a szemkontaktust,
01:09
Ivan would not maintain eye contact,
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01:13
he had lost the words that he did know,
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nem értette a szavakat,
nem reagált a nevére,
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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sem másra, amit kérdeztünk tőle,
mintha a szavakat zajnak fogta volna fel.
01:21
as if words were noise.
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Az egyetlen módszerem arra,
01:25
The only way I could know
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hogy tudjam, mit gondol,
01:30
what was going on with him,
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mit érez,
01:32
what he felt,
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01:34
was looking him in the eye.
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az volt, hogy belenéztem a szemébe.
De ez a kapu is zárva volt.
01:37
But that bridge was broken.
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01:42
How could I teach him about life?
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Hogyan készítsük fel Ivánt az életre?
Amikor olyasmiket csináltam,
ami tetszett neki,
ami tetszett neki,
01:47
When I did things he liked,
he would look at me,
he would look at me,
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ő is rám nézett,
01:51
and we were connected.
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éreztem, hogy együtt vagyunk.
01:53
So I dedicated myself
to working with him on those things,
to working with him on those things,
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Akkor elkezdtem
egyre többször ismételni
egyre többször ismételni
ezeket a dolgokat,
01:57
so we would have more and more
eye-contact moments.
eye-contact moments.
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hogy több és több együtt töltött
pillanatunk lehessen.
pillanatunk lehessen.
Órákat töltöttünk fogócskázással
02:03
We would spend hours and hours playing tag
with his older sister, Alexia,
with his older sister, Alexia,
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vele és a nővérével, Alexiával.
Amikor azt mondtuk: "Elkaptalak!",
02:10
and when we said: "I caught you!"
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keresett minket a tekintetével,
02:14
he would look around for us,
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02:16
and at that moment,
I could feel he was alive.
I could feel he was alive.
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és abban a pillanatban éreztem, hogy él.
02:25
We also hold a record for hours spent
in a swimming pool.
in a swimming pool.
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A medencében is órákat töltöttünk.
Iván mindig is imádta a vizet.
02:31
Ivan always had a passion for water.
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02:35
I remember when he was two and a half,
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Emlékszem, hogy két és fél éves korában
02:39
on a rainy winter day,
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egy esős téli napon
02:43
I was taking him to an indoor pool,
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elvittük egy benti medencébe,
mert még ilyenkor sem hagytuk ki.
02:45
because even on rainy days
we'd go swimming.
we'd go swimming.
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Mentünk az autópályán,
02:49
We were on the highway,
and I took the wrong exit.
and I took the wrong exit.
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és elvétettem a kijáratot.
02:54
He burst into tears and cried
inconsolably, nonstop,
inconsolably, nonstop,
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Elkezdett vigasztalhatatlanul sírni,
amíg vissza nem fordultam,
02:58
until I turned back.
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03:00
Only then did he calm down.
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Csak akkor nyugodott meg.
Hogy lehet, hogy két és fél évesen
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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a nevére nem reagált,
03:07
didn't respond to his own name,
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de még abban a nagy esőben és ködben is,
amiben én semmit sem láttam
amiben én semmit sem láttam
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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képes volt tökéletesen
felismerni az útvonalat?
felismerni az útvonalat?
03:13
he knew the exact route?
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Akkor tudatosult bennem, hogy Ivánnak
03:21
That's when I realized that Ivan
had an exceptional visual memory,
had an exceptional visual memory,
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különlegesen fejlett
vizuális memóriája van,
vizuális memóriája van,
és ez lesz a kapu, mely elvezet hozzá.
03:25
and that that would be my way in.
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03:29
So I started taking
pictures of everything,
pictures of everything,
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Elkezdtem mindent lefotózni,
és az életet így mutattam be neki,
03:32
and teaching him what life was like,
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03:35
showing it to him, picture by picture.
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képről képre.
Még ma is így kommunikál velünk,
03:39
Even now, it's the way Ivan communicates
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így mondja el, mit szeretne,
03:44
what he wants,
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03:46
what he needs
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03:48
and also what he feels.
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mire van szüksége, és hogy mit érez.
Nem csak Iván nézésében
03:54
But it wasn't just
Ivan's eye contact that mattered.
Ivan's eye contact that mattered.
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van ott az a kapcsolódási pont.
03:58
Everyone else's did, too.
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A többiekében is megvan.
Hogyan érhetjük el,
04:02
How could I make people see
not only his autism,
not only his autism,
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hogy ne csak az autistát lássák Ivánban,
04:06
but see him the person
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hanem őt magát,
és mindent, amit adni tud az embernek?
04:09
and everything he can give;
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Mindent, amit képes megcsinálni,
04:12
everything he can do;
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azokat a dolgokat, amiket szeret,
04:15
the things he likes and doesn't like,
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és azokat, amiket nem,
04:18
just like any one of us?
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mint bárki közülünk.
04:21
But for that, I also had
to give of myself.
to give of myself.
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De ehhez nekem is oda kellett tenni magam.
Erő kellett hozzá, hogy el tudjam engedni,
04:25
I had to have the strength to let him go,
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ami nagyon nehéz volt.
04:28
which was extremely difficult.
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Iván 11 éves volt,
04:33
Ivan was 11 years old,
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és a lakásunkhoz közel,
04:35
and he went for treatment
in a neighborhood near our house.
in a neighborhood near our house.
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a szomszéd negyedben volt kezelésen.
04:40
One afternoon,
while I was waiting for him,
while I was waiting for him,
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Egy délután, amíg vártam,
odamentem egy zöldségesstandhoz.
04:44
I went into a greengrocer,
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04:46
a typical neighborhood store
with a little bit of everything.
with a little bit of everything.
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Tipikus helyi zöldséges volt,
aki mindenfélét árult.
aki mindenfélét árult.
Vásárlás közben
04:50
While doing the shopping,
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szóba elegyedtem José-val, az árussal.
04:52
I started talking to Jose, the owner.
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Meséltem neki Ivánról,
és arról, hogy autista,
és arról, hogy autista,
04:56
I told him about Ivan,
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04:59
that he had autism,
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és hogy szeretném megtanítani,
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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hogy egyedül járjon az utcán,
05:05
without anyone holding his hand.
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anélkül, hogy valaki fogná a kezét.
És bátorkodtam megkérdezni Josét,
05:08
So I decided to ask Jose
if Thursdays around 2pm,
if Thursdays around 2pm,
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hogy mi lenne,
ha csütörtökönként délután kettőkor
Iván eljönne segíteni neki
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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elrendezni a vizes üvegeket a polcokon,
05:17
because he loved to organize things.
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mert imád rendet rakni,
05:19
And as a reward, he could buy
some chocolate cookies,
some chocolate cookies,
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és jutalmul vehetne magának
05:23
which were his favorite.
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a kedvenc csokis süteményéből.
Azonnal igent mondott.
05:27
He said "yes" right away.
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05:30
So that's how it went for a year:
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És így ment ez nagyjából egy évig:
Iván megérkezett José zöltségesstandjához,
05:34
Ivan would go to Jose's greengrocer,
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segített neki elrendezni a vizes üvegeket,
05:37
help him arrange the shelves
of water bottles
of water bottles
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így azok tökéletesen,
címkével kifelé álltak,
címkével kifelé álltak,
05:40
with the labels perfectly
lined up on the same side,
lined up on the same side,
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És boldogan távozott
05:46
and he would leave happy
with his chocolate cookies.
with his chocolate cookies.
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a csokis sütijeivel.
José nem autizmus-szakértő.
05:56
Jose is not an expert in autism.
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Nem kell szakértőnek lenni,
06:01
There is no need to be an expert
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06:05
nor do anything heroic to include someone.
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sem hősnek lenni ahhoz,
hogy bevonjuk a másikat.
06:12
We just need to be there --
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Egyszerűen elég, ha vagyunk.
06:14
(Applause)
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(Taps)
06:22
(Applause ends)
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Így igaz, hőstettek nélkül.
06:25
Really, no heroic deed --
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Egyszerűen közel kell lennünk.
06:28
we simply need to be close.
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És ha valamitől félünk,
06:33
And if we are afraid of something
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vagy ha valamit nem értünk, kérdezzünk!
06:36
or we don't understand something,
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06:38
we need to ask.
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Legyünk kíváncsiak!
06:41
Let's be curious
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De sohasem közömbösek.
06:44
but never indifferent.
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Legyen bátorságunk egymás szemébe nézni,
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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mert a tekintetünkkel
06:56
because by looking,
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egy világot nyithatunk meg a másikban!
06:58
we can open a whole world to someone else.
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(Taps)
07:03
(Applause)
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(Ováció)
07:05
(Cheers)
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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