TEDxRiodelaPlata
Carina Morillo: To understand autism, don't look away
Carina Morillo: Para entender o autismo, não vires a cara
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Carina Morillo não sabia quase nada sobre o autismo quando o seu filho Ivan foi diagnosticado, só que ele não falava nem respondia às palavras e ela teve que encontrar uma maneira d se relacionar com ele. Carina conta como aprendeu a ajudar o filho a realizar-se, partilhando 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.
"Olha 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 estas palavras, passei a ser
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, com 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 comunica através de um iPad
00:32
where his whole universe of words
exists in images.
exists in images.
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onde está todo o seu universo
de palavras em imagens.
de palavras em imagens.
Soubemos do seu diagnóstico
quando tinha dois anos e meio
quando 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 recordo
esse momento com muita dor.
esse momento com muita dor.
00:49
My husband and I felt really lost;
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O meu marido e eu
sentíamo-nos perdidos.
sentíamo-nos 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 podíamos pesquisar informações,
00:59
you couldn't Google information,
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01:02
so we made those first steps
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por isso os 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 contacto visual,
01:13
he had lost the words that he did know,
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perdera 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 pedíssemos,
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 é 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 para os seus olhos.
Mas essa ligação estava quebrada.
01:37
But that bridge was broken.
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Como ensinar a vida a 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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Contudo, eu fazia coisas
de que ele gostava.
de que ele gostava.
Aí, sim, olhava para mim
01:51
and we were connected.
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e estávamos juntos,
Por isso dediquei-me
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 que cada vez houvesse
mais momentos de olhares.
mais momentos de olhares.
01:57
so we would have more and more
eye-contact moments.
eye-contact moments.
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Passávamos horas e horas
a jogar à apanhada
a jogar à apanhada
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 a irmã mais velha, Alexia.
Quando dizíamos: "Vou apanhar-te!"
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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ele olhava para nós
e, nesse momento,
eu sentia que ele estava vivo.
eu 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 temos um 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 teve uma paixão
muito forte pela água.
muito forte pela 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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Recordo que ele tinha
dois anos e meio
dois anos e meio
e, um dia de inverno,
de muita chuva,
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 estava a levá-lo
para uma piscina coberta,
para uma piscina coberta,
02:45
because even on rainy days
we'd go swimming.
we'd go swimming.
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porque nem sequer nesses dias
deixávamos de ir.
deixávamos de ir.
Estávamos a seguir pela autoestrada
02:49
We were on the highway,
and I took the wrong exit.
and I took the wrong exit.
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e enganei-me na saída.
02:54
He burst into tears and cried
inconsolably, nonstop,
inconsolably, nonstop,
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Ele começou a chorar,
desconsolado, sem parar,
desconsolado, sem parar,
até eu retomar o caminho
02:58
until I turned back.
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e então sim, acalmou-se.
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 daquela chuva e neblina,
em que quase não se via nada,
em que quase não se via 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?
Dei-me conta de que Ivan
tinha uma memória visual excecional,
tinha uma memória visual excecional,
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 ia ser essa
a minha porta de entrada.
a minha porta de entrada.
03:25
and that that would be my way in.
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Comecei a tirar fotografias a tudo
03:29
So I started taking
pictures of everything,
pictures of everything,
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e a ensinar-lhe a vida assim,
03:32
and teaching him what life was like,
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mostrando-as... 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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Hoje continua a ser a forma
como Ivan nos transmite
como Ivan nos transmite
o que quer, de que necessita
03:44
what he wants,
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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 era apenas
com o olhar de Ivan.
com o olhar de Ivan.
03:54
But it wasn't just
Ivan's eye contact that mattered.
Ivan's eye contact that mattered.
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Era também com os olhares
dos outros.
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 para o seu autismo,
04:06
but see him the person
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mas que olhassem para ele,
04:09
and everything he can give;
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para tudo o que ele pode dar?
04:12
everything he can do;
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Com tudo o que ele é capaz de fazer?
04:15
the things he likes and doesn't like,
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Com as coisas de que gosta,
aquelas de que não gosta,
aquelas de que não gosta,
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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Para isso, eu também
tinha que contribuir.
tinha que contribuir.
Tinha que decidir-me a libertá-lo.
04:25
I had to have the strength to let him go,
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Isso custava-me imenso.
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 o tratamento muito perto
de casa, noutro bairro.
de casa, noutro bairro.
04:40
One afternoon,
while I was waiting for him,
while I was waiting for him,
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Uma tarde, enquanto
estava à espera dele,
estava à espera dele,
04:44
I went into a greengrocer,
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entrei numa loja de legumes,
04:46
a typical neighborhood store
with a little bit of everything.
with a little bit of everything.
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uma típica loja de legumes de bairro
que tem um pouco de tudo.
que tem um pouco de tudo.
Enquanto compra, não compra,
04:50
While doing the shopping,
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04:52
I started talking to Jose, the owner.
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pus-me a conversar com José, o dono.
04:56
I told him about Ivan,
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Falei-lhe de Ivan, que tinha autismo
04:59
that he had autism,
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e que eu queria que ele aprendesse
a andar sozinho na rua,
a andar sozinho na 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 andar de mão dada com ninguém.
Atrevi-me a perguntar-lhe
05:08
So I decided to ask Jose
if Thursdays around 2pm,
if Thursdays around 2pm,
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se às quintas-feiras, às duas da tarde,
Ivan podia ir ajudá-lo a arrumar
as prateleiras das garrafas de água
as prateleiras das 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 prémio, dar-lhe
dar-lhe umas bolachinhas de chocolate,
dar-lhe umas bolachinhas de chocolate,
05:23
which were his favorite.
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as bolachas preferidas dele.
Disse-me logo 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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Isso durou um ano.
05:34
Ivan would go to Jose's greengrocer,
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Ivan chegava à loja de José,
05:37
help him arrange the shelves
of water bottles
of water bottles
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ajudava-o a arrumar as prateleiras
das garrafas de água
das garrafas 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 ia-se embora, feliz,
com as suas bolachas de chocolate.
05:56
Jose is not an expert in autism.
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José não é especialista em autismo.
06:01
There is no need to be an expert
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Não é preciso ser especialista de nada,
06:05
nor do anything heroic to include someone.
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nem fazer nenhuma façanha
para incluir outra pessoa.
para incluir outra pessoa.
06:12
We just need to be there --
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Simplesmente temos que estar...
06:14
(Applause)
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(Aplausos)
06:22
(Applause ends)
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É verdade, não é 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 perto.
06:33
And if we are afraid of something
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Se alguma coisa nos mete medo,
06:36
or we don't understand something,
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ou não percebemos, perguntemos,
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 coragem de nos olharmos nos olhos
porque, com o nosso olhar,
06:56
because by looking,
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podemos abrir um mundo a outra pessoa.
06:58
we can open a whole world to someone else.
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(Aplausos)
07:03
(Applause)
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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