ABOUT THE SPEAKER
Carina Morillo - Autism advocate
Carina 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.

More profile about the speaker
Carina Morillo | Speaker | TED.com
TEDxRiodelaPlata

Carina Morillo: To understand autism, don't look away

카리나 모릴료(Carina Morillo): 자폐증을 이해하려면, 눈을 마주치세요

Filmed:
673,429 views

카리나 모릴료는 그녀의 아들 이반이 자폐증 진단을 받을 당시, 아이가 말을 하지 않고 단어에 반응하지 않는다는 사실 외에는 자폐증이 무엇인지 잘 알지 못했습니다. 그녀는 아들과 소통할 다른 방법을 찾아야만 했습니다. 카리나가 아들과 함께 호기심을 나누며 소통하는 방법을 배우게 된 이야기를 들어봅시다.
- Autism advocate
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.

"날 보렴."
00:13
"Look at me!"
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00:16
That phrase turned돌린 me
into an eye-contact눈맞춤 coach코치.
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이 문구로 눈 맞추기 코치가 되었죠.
00:22
I'm the mother어머니 of Ivan이반; he's 15 years연령 old늙은.
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저는 15살 이반의 엄마입니다.
00:26
Ivan이반 has autism자폐성,
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이반은 자폐 아동이고,
말을 안 합니다.
00:28
he doesn't speak말하다,
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00:30
and he communicates의사 소통하다 through...을 통하여 an iPadiPad,
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대신 아이패드 사진을 통해 소통합니다.
00:32
where his whole완전한 universe우주 of words
exists존재하다 in images이미지들.
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이반에게는 사진이 곧 단어입니다.
이반이 2살 반일 때, 진단을 받았죠.
00:37
He was diagnosed진단받은
when he was two and a half절반.
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00:43
I still remember생각해 내다 that day painfully고통스럽게.
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지금도 그 때의 고통이 기억납니다.
00:49
My husband남편 and I felt펠트 really lost잃어버린;
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남편과 저는 길을 잃은 기분이었죠.
00:53
we didn't know where to begin시작하다.
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어디서부터 시작할지 몰랐습니다.
당시에는 인터넷도 없었습니다.
00:56
There was no internet인터넷,
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구글로 정보를 찾을 수 없었어요.
00:59
you couldn't할 수 없었다 GoogleGoogle information정보,
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01:02
so we made만든 those first steps걸음
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우리는 순전히 직감에 의존하여
첫걸음을 내디딜 수밖에 없었습니다.
01:05
out of sheer얇은 intuition직관.
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01:09
Ivan이반 would not maintain유지하다 eye contact접촉,
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이반은 제대로 눈을 마주치지 못했고
01:13
he had lost잃어버린 the words that he did know,
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전에 알던 단어도 잊어버렸습니다.
01:16
and he didn't respond응창 성가 to his name이름
or to anything we asked물었다 him,
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이름을 불러도 무반응이었고
어떤 질문에도 묵묵부답이었습니다.
말이 소음으로 느껴지는 듯 보였죠.
01:21
as if words were noise소음.
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01:25
The only way I could know
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이반이 무슨 생각을 하고
어떤 기분 상태인지
01:30
what was going on with him,
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파악 할 수 있는 유일한 방법은
01:32
what he felt펠트,
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01:34
was looking him in the eye.
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눈을 바라보는 것이었습니다.
그러나 연결고리는 끊겨 있었습니다.
01:37
But that bridge다리 was broken부서진.
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이반에게 어떻게 삶을 가르칠까요?
01:42
How could I teach가르치다 him about life?
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01:47
When I did things he liked좋아했다,
he would look at me,
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이반이 좋아하는 걸 하면
그때 아이는 절 바라보았고
01:51
and we were connected연결된.
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우리는 서로 연결되었습니다.
이런 순간이 자주있길 기대하며
01:53
So I dedicated헌신적 인 myself자기
to working with him on those things,
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아이가 좋아하는 걸
찾는 데 집중했습니다.
01:57
so we would have more and more
eye-contact눈맞춤 moments순간들.
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이반의 누나 알렉시아와 함께
02:03
We would spend보내 hours시간 and hours시간 playing연주하다 tag꼬리표
with his older더 오래된 sister여자 형제, AlexiaAlexia,
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몇 시간 동안
술래잡기를 하곤 했습니다.
우리가 "와! 잡았다!"라고 말하면
02:10
and when we said: "I caught잡힌 you!"
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02:14
he would look around for us,
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이반은 눈짓으로 우리를 찾았습니다.
그 순간, 아들이
살아있다고 느꼈습니다.
02:16
and at that moment순간,
I could feel he was alive살아 있는.
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수영장에도 장시간 머물렀습니다.
02:25
We also또한 hold보류 a record기록 for hours시간 spent지출하다
in a swimming수영 pool.
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이반은 물에 대해 큰 열정을 보였어요.
02:31
Ivan이반 always had a passion열정 for water.
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02:35
I remember생각해 내다 when he was two and a half절반,
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아이가 두 살 반이었을 때
비가 많이 내리던 겨울날
02:39
on a rainy비오는 winter겨울 day,
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02:43
I was taking취득 him to an indoor실내의 pool,
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실내 수영장으로 향하고 있었죠.
02:45
because even on rainy비오는 days
we'd우리는 go swimming수영.
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궂은 날씨도 아랑곳하지 않았죠.
고속도로를 달리던 중
02:49
We were on the highway고속도로,
and I took~했다 the wrong잘못된 exit출구.
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그만 길을 잘못 들었습니다.
02:54
He burst파열 into tears눈물 and cried울었다
inconsolablyinconsolably, nonstop논스톱,
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이반은 멈추지 않고
하염없이 울었습니다.
바른길로 진입해서야 눈물을 멈췄어요.
02:58
until...까지 I turned돌린 back.
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그제야 진정이 되었습니다.
03:00
Only then did he calm고요한 down.
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이름을 불러도 답이 없던
2살 반의 아이가
03:03
How was it possible가능한
that a two and a half절반 year old늙은
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안개가 자욱하고 비가 쏟아지는 날
03:07
didn't respond응창 성가 to his own개인적인 name이름,
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저도 알아보기 힘들었던 길을
03:09
yet아직 in the middle중간 of the rain and fog안개,
where I couldn't할 수 없었다 see anything,
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03:13
he knew알고 있었다 the exact정확한 route노선?
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기억한다는 것이 어떻게 가능할까요?
우수한 시각 기억력을 가졌던 겁니다.
03:21
That's when I realized깨달은 that Ivan이반
had an exceptional특별한 visual시각적 인 memory기억,
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이반의 세계를 이해할 문이 열렸습니다.
03:25
and that that would be my way in.
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그때부터 모든걸 사진으로 남겼습니다.
03:29
So I started시작한 taking취득
pictures영화 of everything,
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사진을 한 장씩 보여주며
03:32
and teaching가르치는 him what life was like,
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삶에 대해 가르쳤습니다.
03:35
showing전시 it to him, picture그림 by picture그림.
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03:39
Even now, it's the way Ivan이반 communicates의사 소통하다
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이반은 지금도 사진으로 소통합니다.
03:44
what he wants,
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원하는 것과 필요한 것을 말하고
03:46
what he needs필요
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자신의 감정도 표현합니다.
03:48
and also또한 what he feels느낀다..
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그러나 이반의 시선만
중요한 게 아니었죠.
03:54
But it wasn't아니었다. just
Ivan's이반의 eye contact접촉 that mattered중요하다.
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타인들의 시선도 있었습니다.
03:58
Everyone각자 모두 else's다른 did, too.
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04:02
How could I make people see
not only his autism자폐성,
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어떻게 하면
사람들이 자폐만을 보지 않고
아이 자체를 봐줄까요?
04:06
but see him the person사람
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04:09
and everything he can give;
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아이의 능력과
04:12
everything he can do;
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가능성을 보고
04:15
the things he likes좋아하는 사람 and doesn't like,
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우리처럼 좋아하고 싫어하는게 있는
04:18
just like any one of us?
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아이의 모습을 봐주길 바랐습니다.
04:21
But for that, I also또한 had
to give of myself자기.
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이를 위해, 제 몫을 해야 했습니다.
마음을 다잡고
아이를 놓아줘야 했습니다.
04:25
I had to have the strength to let him go,
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무척 힘들었습니다.
04:28
which어느 was extremely매우 difficult어려운.
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이반이 11세 되던 해
04:33
Ivan이반 was 11 years연령 old늙은,
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04:35
and he went갔다 for treatment치료
in a neighborhood이웃 near가까운 our house.
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집 근처 동네에서 치료를 받았습니다.
04:40
One afternoon대낮,
while I was waiting기다리는 for him,
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어느 날 오후, 아이를 기다리던 저는
04:44
I went갔다 into a greengrocer청과물 상인,
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채소가게에 들어갔습니다.
04:46
a typical전형적인 neighborhood이웃 store저장
with a little bit비트 of everything.
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모든 것을 조금씩 파는
평범한 가게였죠.
이것저것 사다가
04:50
While doing the shopping쇼핑,
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04:52
I started시작한 talking말하는 to Jose호세, the owner소유자.
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가게 주인인 호세와
대화하게 되었습니다.
04:56
I told him about Ivan이반,
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이반에게 자폐증이 있다고 말했죠.
04:59
that he had autism자폐성,
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저는 이반이 다른 사람의 도움 없이도
05:01
and that I wanted him to learn배우다
to walk산책 down the street거리 by himself그 자신,
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05:05
without없이 anyone누군가 holding보유 his hand.
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혼자 걷는 법을 배우길 바랐습니다.
용기를 내어 호세에게 물어보았습니다.
05:08
So I decided결정적인 to ask청하다 Jose호세
if Thursdays목요일 around 2pm오후,
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혹시 매주 목요일 오후 두 시
이반이 정리하는걸 무척 좋아하는데
05:13
Ivan이반 could come and help him arrange붙이다
the water bottles on the shelves선반,
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물병을 정리하러 와도 되는지 물었죠.
05:17
because he loved사랑하는 to organize구성 things.
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05:19
And as a reward보상, he could buy사다
some chocolate초콜릿 cookies쿠키,
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상으로 초콜릿 과자면 충분하다고요.
05:23
which어느 were his favorite특히 잘하는.
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이반이 좋아하는 과자였죠.
호세는 바로 승낙했습니다.
05:27
He said "yes" right away.
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05:30
So that's how it went갔다 for a year:
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그 후 일 년 동안
05:34
Ivan이반 would go to Jose's호세 greengrocer청과물 상인,
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이반은 호세의 채소가게에 갔습니다.
05:37
help him arrange붙이다 the shelves선반
of water bottles
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물병이 진열된 선반을 정리했지요.
한 치의 착오도 없이 물병의 상표가
05:40
with the labels라벨 perfectly아주
lined안을 댄 up on the same같은 side측면,
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나란히 한 줄에 정렬되어 있었어요.
05:46
and he would leave휴가 happy행복
with his chocolate초콜릿 cookies쿠키.
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이반은 초콜릿 과자를 들고
행복해하며 집으로 돌아왔습니다.
05:56
Jose호세 is not an expert전문가 in autism자폐성.
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호세는 자폐증 전문가가 아닙니다.
06:01
There is no need to be an expert전문가
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전문가일 필요가 전혀 없습니다.
06:05
nor...도 아니다 do anything heroic과장된 어조 to include포함 someone어떤 사람.
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꼭 영웅이 아니라도
포용할 수 있습니다.
06:12
We just need to be there --
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우리는 그저
(박수)
06:14
(Applause박수 갈채)
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06:22
(Applause박수 갈채 ends끝이다)
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네, 영웅적 행위가 없어도
06:25
Really, no heroic과장된 어조 deed증서 --
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06:28
we simply간단히 need to be close닫기.
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다만 가까이서 지켜보면 됩니다.
06:33
And if we are afraid두려워하는 of something
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혹시 두려움이 찾아오거나
06:36
or we don't understand알다 something,
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이해 안되는 부분이 있다면 질문합시다.
06:38
we need to ask청하다.
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호기심을 가집시다.
06:41
Let's be curious이상한
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06:44
but never indifferent무관심한.
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그러나 절대 무관심하지 맙시다.
06:50
Let's have the courage용기
to look each마다 other in the eye,
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용기를 가지고 서로의 눈을 바라봅시다.
우리의 눈빛이
06:56
because by looking,
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누군가에게 새로운 세상을 열어줍니다.
06:58
we can open열다 a whole완전한 world세계 to someone어떤 사람 else그밖에.
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(박수)
07:03
(Applause박수 갈채)
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07:05
(Cheers건배)
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(갈채)
Translated by Kim Sojeong Sue
Reviewed by Jihyeon J. Kim

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ABOUT THE SPEAKER
Carina Morillo - Autism advocate
Carina 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.

More profile about the speaker
Carina Morillo | Speaker | TED.com