TEDxRiodelaPlata
Carina Morillo: To understand autism, don't look away
Carina Morillo: Para entender o autismo, não olhe para o outro lado
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Carina Morillo não sabia quase nada sobre o autismo, quando o seu filho Ivan foi diagnosticado. Só sabia que ele não falava nem respondia às palavras, e que ela precisava encontrar maneiras de se conectar com ele. Carina conta como aprendeu a ajudar o filho a realizar-se, compartilhando com ele a curiosidade.
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.
"Olhe para mim!"
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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Com essa frase me tornei
uma treinadora de olhares.
uma treinadora de olhares.
00:22
I'm the mother of Ivan; he's 15 years old.
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Sou mãe de Ivan, de 15 anos.
00:26
Ivan has autism,
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Ivan tem autismo, não fala
00:28
he doesn't speak,
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00:30
and he communicates through an iPad,
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e se comunica através de um iPad
00:32
where his whole universe of words
exists in images.
exists in images.
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no qual está todo seu universo
de palavras em imagens.
de palavras em imagens.
Recebemos o diagnóstico
quando ele tinha dois anos e meio,
quando ele tinha dois anos e meio,
00:37
He was diagnosed
when he was two and a half.
when he was two and a half.
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00:43
I still remember that day painfully.
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e ainda hoje me lembro
desse momento com muita dor.
desse momento com muita dor.
00:49
My husband and I felt really lost;
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Eu e meu marido
nos sentíamos muito perdidos.
nos sentíamos muito perdidos.
00:53
we didn't know where to begin.
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Não sabíamos por onde começar.
Não havia internet, como agora,
00:56
There was no internet,
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não se podia pesquisar informação,
00:59
you couldn't Google information,
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01:02
so we made those first steps
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de forma que esses primeiros passos
foram de pura intuição.
01:05
out of sheer intuition.
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01:09
Ivan would not maintain eye contact,
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Ivan não mantinha o olhar,
01:13
he had lost the words that he did know,
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tinha perdido as palavras que dizia,
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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não respondia ao seu nome
nem a nada que lhe pedíamos,
como se as palavras fossem ruídos.
01:21
as if words were noise.
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01:25
The only way I could know
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A única forma que eu tinha
de saber o que se passava com ele,
01:30
what was going on with him,
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o que ele sentia,
01:32
what he felt,
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01:34
was looking him in the eye.
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era olhando em seus olhos.
Mas essa ponte estava quebrada.
01:37
But that bridge was broken.
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Como ensinar a vida ao Ivan?
01:42
How could I teach him about life?
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01:47
When I did things he liked,
he would look at me,
he would look at me,
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Quando eu fazia coisas que ele gostava,
aí sim, me olhava;
01:51
and we were connected.
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e estávamos juntos.
Assim me dediquei
a segui-lo nessas coisas,
a segui-lo nessas coisas,
01:53
So I dedicated myself
to working with him on those things,
to working with him on those things,
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para ter cada vez mais
momentos de olhares.
momentos de olhares.
01:57
so we would have more and more
eye-contact moments.
eye-contact moments.
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Passávamos horas brincando de pegar
02:03
We would spend hours and hours playing tag
with his older sister, Alexia,
with his older sister, Alexia,
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com sua irmã mais velha, Alexia,
e nessa brincadeira de: "Vou te pegar!"
02:10
and when we said: "I caught you!"
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02:14
he would look around for us,
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nos buscava com o olhar,
e eu ali, naquele momento,
sentia que ele estava vivo.
sentia que ele estava vivo.
02:16
and at that moment,
I could feel he was alive.
I could feel he was alive.
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Também tínhamos recorde
de horas na piscina.
de horas na piscina.
02:25
We also hold a record for hours spent
in a swimming pool.
in a swimming pool.
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Ivan sempre foi apaixonado por água.
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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Eu me lembro que aos dois anos e meio,
em um dia de inverno, de muita chuva,
02:39
on a rainy winter day,
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02:43
I was taking him to an indoor pool,
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eu o estava levando a uma piscina coberta,
02:45
because even on rainy days
we'd go swimming.
we'd go swimming.
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porque nem nesses dias deixávamos de ir.
Estávamos indo pela estrada,
02:49
We were on the highway,
and I took the wrong exit.
and I took the wrong exit.
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e me enganei com a saída.
02:54
He burst into tears and cried
inconsolably, nonstop,
inconsolably, nonstop,
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Ele começou a chorar, sem parar,
desconsoladamente,
desconsoladamente,
até que peguei o caminho certo
02:58
until I turned back.
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e só então ele se acalmou.
03:00
Only then did he calm down.
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Como era possível
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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que com dois anos e meio
não respondesse ao seu nome,
não respondesse ao seu nome,
03:07
didn't respond to his own name,
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mas no meio da chuva e da neblina,
em que eu não conseguia ver nada,
em que eu não conseguia ver nada,
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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03:13
he knew the exact route?
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fosse capaz de reconhecer
perfeitamente o caminho?
perfeitamente o caminho?
Ali me dei conta que o Ivan tinha
uma memória visual excepcional,
uma memória visual excepcional,
03:21
That's when I realized that Ivan
had an exceptional visual memory,
had an exceptional visual memory,
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e que essa seria minha porta de entrada.
03:25
and that that would be my way in.
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Então comecei a tirar fotos de tudo,
03:29
So I started taking
pictures of everything,
pictures of everything,
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e ensinar a vida a ele assim,
03:32
and teaching him what life was like,
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mostrando-a... foto a foto.
03:35
showing it to him, picture by picture.
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03:39
Even now, it's the way Ivan communicates
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E até hoje é dessa forma
que Ivan nos conta
que Ivan nos conta
03:44
what he wants,
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o que ele quer, o que precisa,
03:46
what he needs
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e também o que sente.
03:48
and also what he feels.
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Mas o problema não estava
só no olhar do Ivan.
só no olhar do Ivan.
03:54
But it wasn't just
Ivan's eye contact that mattered.
Ivan's eye contact that mattered.
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Também estava no olhar dos outros.
03:58
Everyone else's did, too.
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04:02
How could I make people see
not only his autism,
not only his autism,
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Como conseguir
que não olhassem só o seu autismo,
mas que olhassem pra ele,
04:06
but see him the person
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04:09
and everything he can give;
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com tudo que ele pode dar?
04:12
everything he can do;
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Com tudo que é capaz de fazer?
04:15
the things he likes and doesn't like,
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Com as coisas de que ele
gosta, e as que não,
gosta, e as que não,
04:18
just like any one of us?
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como qualquer um de nós?
04:21
But for that, I also had
to give of myself.
to give of myself.
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Mas para isso eu também
precisava fazer minha parte.
precisava fazer minha parte.
Eu precisava me animar a soltá-lo.
04:25
I had to have the strength to let him go,
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E me custava muito.
04:28
which was extremely difficult.
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Ivan tinha 11 anos,
04:33
Ivan was 11 years old,
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04:35
and he went for treatment
in a neighborhood near our house.
in a neighborhood near our house.
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e fazia seu tratamento em outro bairro,
muito perto de casa,
muito perto de casa,
04:40
One afternoon,
while I was waiting for him,
while I was waiting for him,
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E uma tarde, enquanto eu o esperava,
04:44
I went into a greengrocer,
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entrei num mercado de frutas,
04:46
a typical neighborhood store
with a little bit of everything.
with a little bit of everything.
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um mercado típico de bairro,
que tem de tudo um pouco.
que tem de tudo um pouco.
E entre uma compra e outra,
04:50
While doing the shopping,
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04:52
I started talking to Jose, the owner.
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comecei a conversar com o dono, Jose.
04:56
I told him about Ivan,
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Contei a ele sobre Ivan,
que tinha autismo,
que tinha autismo,
04:59
that he had autism,
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e que eu queria que ele aprendesse
a caminhar sozinho pela rua,
a caminhar sozinho pela rua,
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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05:05
without anyone holding his hand.
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sem ninguém segurá-lo pela mão.
E me animei a perguntar-lhe
05:08
So I decided to ask Jose
if Thursdays around 2pm,
if Thursdays around 2pm,
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se nas quintas, às duas da tarde,
Ivan podia vir ajudá-lo a arrumar
as prateleiras com garrafas de água,
as prateleiras com garrafas de água,
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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porque ele adorava arrumar,
05:17
because he loved to organize things.
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05:19
And as a reward, he could buy
some chocolate cookies,
some chocolate cookies,
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e como prêmio comprar
umas bolachas de chocolate,
umas bolachas de chocolate,
05:23
which were his favorite.
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suas bolachas preferidas.
Logo me disse que sim.
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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E foi assim durante um ano.
05:34
Ivan would go to Jose's greengrocer,
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Ivan chegava à loja de Jose,
05:37
help him arrange the shelves
of water bottles
of water bottles
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ajudava a arrumar as prateleiras de água,
que ficavam com as etiquetas
perfeitamente alinhadas,
perfeitamente alinhadas,
05:40
with the labels perfectly
lined up on the same side,
lined up on the same side,
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milimetricamente, para o mesmo lado.
05:46
and he would leave happy
with his chocolate cookies.
with his chocolate cookies.
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E saía feliz
com suas bolachas de chocolate.
05:56
Jose is not an expert in autism.
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Jose não é especialista em autismo.
06:01
There is no need to be an expert
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Não é preciso ser especialista em algo
06:05
nor do anything heroic to include someone.
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nem fazer nenhuma façanha
para incluir o outro.
para incluir o outro.
06:12
We just need to be there --
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Simplesmente temos que estar...
(Aplausos)
06:14
(Applause)
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06:22
(Applause ends)
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Isso mesmo, nenhuma façanha.
06:25
Really, no heroic deed --
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06:28
we simply need to be close.
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Simplesmente temos que estar próximos.
06:33
And if we are afraid of something
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E se algo nos dá medo,
06:36
or we don't understand something,
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ou não entendemos, temos que perguntar;
06:38
we need to ask.
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sejamos curiosos,
06:41
Let's be curious
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06:44
but never indifferent.
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mas nunca indiferentes.
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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Tenhamos a coragem de olhar nos olhos,
porque, com nosso olhar,
06:56
because by looking,
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podemos abrir um mundo ao outro.
06:58
we can open a whole world to someone else.
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(Aplausos)
07:03
(Applause)
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(Vivas)
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