TEDxRiodelaPlata
Carina Morillo: To understand autism, don't look away
Carina Morillo: Autismoa ulertzeko, ez ezazu begirada kendu
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Carina Morillo-k ez zuen ia ideiarik autismoari buruz, Ivan, bere semea diagnostikatua izan zenean, zekien bakarra berak ez zuela hitz egiten eta berarekin konektatzeko moduak aurkitu behar zituela zen. Carinak azaltzen du nola ikasi zuen bere semeari laguntzen, berarekin jakin-mina partekatuz.
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.
Begira nazazu!
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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Hitz honekin bihurtu nintzen
begiraden entrenatzaile.
begiraden entrenatzaile.
00:22
I'm the mother of Ivan; he's 15 years old.
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Ivan-en ama naiz, 15 urte dituena.
00:26
Ivan has autism,
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Ivan-ek autismoa du, ez du hitzik egiten
00:28
he doesn't speak,
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00:30
and he communicates through an iPad,
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eta iPad baten bitartez komunikatzen da,
00:32
where his whole universe of words
exists in images.
exists in images.
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non bere hitzen unibertsoa
irudietan dagoen.
irudietan dagoen.
Diagnosia bi urte eta erdi zituenean
jaso genuen,
jaso genuen,
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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eta gaur egun oraindik, min handiz
gogoratzen dut momentu hura.
gogoratzen dut momentu hura.
Senarrak eta biok oso galduta
ikusten genuen gure burua.
ikusten genuen gure burua.
00:49
My husband and I felt really lost;
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00:53
we didn't know where to begin.
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Ez genekien nondik hasi.
Ez zegoen Internetik gaur egun bezala,
00:56
There was no internet,
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ezin zen Google-en informaziorik bilatu,
00:59
you couldn't Google information,
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01:02
so we made those first steps
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eta beraz lehen urrats haiek,
intuizio hutsa izan ziren.
01:05
out of sheer intuition.
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01:09
Ivan would not maintain eye contact,
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Ivan-ek ez zuen begirada eusten,
01:13
he had lost the words that he did know,
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esan ohi zituen hitzak galdu zituen,
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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ez zion bere izenari erantzuten
ezta eska geniezaiokeen edozerri ere,
hitzak zaratak izango balira bezala zen.
01:21
as if words were noise.
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01:25
The only way I could know
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Nik neukan modu bakarra
zer gertatzen zitzaion jakiteko,
01:30
what was going on with him,
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sentitzen zuena,
01:32
what he felt,
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01:34
was looking him in the eye.
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begietara begiratzea zen.
01:37
But that bridge was broken.
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Baina zubi hori puskatua zegoen.
Nola erakutsi bizitza Ivan-i?
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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Gustuko zituen gauzak egiten nituenean,
orduan bai, begiratzen zidan;
01:51
and we were connected.
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eta elkarrekin geunden.
Hortaz, horretan jarraitu nuen,
01:53
So I dedicated myself
to working with him on those things,
to working with him on those things,
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01:57
so we would have more and more
eye-contact moments.
eye-contact moments.
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gero eta begirada une gehiago
egon zitezen.
egon zitezen.
Orduak ematen genituen
"orbanera jolasten",
"orbanera jolasten",
02:03
We would spend hours and hours playing tag
with his older sister, Alexia,
with his older sister, Alexia,
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bere arreba nagusiarekin, Alexia,
eta "Ai! Arrapatu zaitut!"
txanda horietan
txanda horietan
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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begiradarekin bilatzen zigun,
eta nik, une horretan,
bizirik zegoela sentitzen nuen.
bizirik zegoela sentitzen nuen.
02:16
and at that moment,
I could feel he was alive.
I could feel he was alive.
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Baita ere, igerilekuan emandako
orduen errekorra daukagu.
orduen errekorra daukagu.
02:25
We also hold a record for hours spent
in a swimming pool.
in a swimming pool.
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Ivanek beti izan zuen urarekiko
izugarrizko grina.
izugarrizko grina.
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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Gogoratzen naiz bi urte eta erdi zituela,
eta neguko egun euritsu batean,
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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igerileku estali batera neraman,
02:45
because even on rainy days
we'd go swimming.
we'd go swimming.
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egun horietan ere
ez bait genion joateari uzten.
ez bait genion joateari uzten.
Autobidean zehar gindoazen,
02:49
We were on the highway,
and I took the wrong exit.
and I took the wrong exit.
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eta irteeraz nahastu nintzen.
Eta bertan negarrez hasi zen,
atsekabe handiz, geratu gabe
atsekabe handiz, geratu gabe
02:54
He burst into tears and cried
inconsolably, nonstop,
inconsolably, nonstop,
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bide egokia berrartu nuen arte
02:58
until I turned back.
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eta orduan, baretu zen.
03:00
Only then did he calm down.
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Nola liteke posible,
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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bi urte eta erdirekin
ez erantzutea bere izenari,
ez erantzutea bere izenari,
03:07
didn't respond to his own name,
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baina euri eta laino hartan,
ni ezer ikusteko gai ez nintzen hartan,
ni ezer ikusteko gai ez nintzen hartan,
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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bera bidea ezagutzeko gai izatea?
Orduan konturatu nintzen Ivan-ek
izugarrizko ikus-oroimena zuela,
izugarrizko ikus-oroimena zuela,
03:21
That's when I realized that Ivan
had an exceptional visual memory,
had an exceptional visual memory,
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eta hori izango zela nire sarrera.
03:25
and that that would be my way in.
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Beraz guztiari argazkiak ateratzen
hasi nintzen,
hasi nintzen,
03:29
So I started taking
pictures of everything,
pictures of everything,
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eta horrela bizitza erakusten,
03:32
and teaching him what life was like,
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argazkiak erakutsiz,
bata bestaren ondoren.
bata bestaren ondoren.
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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Eta egun oraindik, modu honen bitartez
azaltzen digu Ivan-ek
azaltzen digu Ivan-ek
03:44
what he wants,
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nahi duena, behar duena,
03:46
what he needs
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eta, baita sentitzen duena ere.
03:48
and also what he feels.
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Baina ez zegoen solik Ivan-en begiradan.
03:54
But it wasn't just
Ivan's eye contact that mattered.
Ivan's eye contact that mattered.
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Beste guztien begiradan
ere bazegoen.
ere bazegoen.
03:58
Everyone else's did, too.
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Nola lortu bere autismoari
soilik ez begiratzea,
soilik ez begiratzea,
04:02
How could I make people see
not only his autism,
not only his autism,
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baizik eta berari ere begiratzea,
04:06
but see him the person
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04:09
and everything he can give;
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eman dezakeen guztiarekin?
04:12
everything he can do;
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Egin dezakeen guztiarekin?
04:15
the things he likes and doesn't like,
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Gustuko dituen gauzekin,
gustuko ez dituenekin,
gustuko ez dituenekin,
04:18
just like any one of us?
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gutako edonorri bezala.
04:21
But for that, I also had
to give of myself.
to give of myself.
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Baina horretarako,
nik ere nire aldetik jarri behar nuen.
nik ere nire aldetik jarri behar nuen.
Bera askatzera animatu behar nintzen.
04:25
I had to have the strength to let him go,
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Eta izugarri kostatzen zitzaidan.
04:28
which was extremely difficult.
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Ivan-ek 11 urte zituen,
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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eta tratamendua etxetik oso gertu
egiten zuen, beste auzo batean.
egiten zuen, beste auzo batean.
04:40
One afternoon,
while I was waiting for him,
while I was waiting for him,
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Eta arratsalde batean, denbora pasa
nengoen, itxaroten nuen bitartean,
nengoen, itxaroten nuen bitartean,
04:44
I went into a greengrocer,
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barazki-dendan sartu nintzen
04:46
a typical neighborhood store
with a little bit of everything.
with a little bit of everything.
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auzoetako ohiko barazki dendan,
non denetarik duten.
non denetarik duten.
Erosten nengoen bitartean,
04:50
While doing the shopping,
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04:52
I started talking to Jose, the owner.
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Jose, jabearekin hizketan hasi nintzen.
04:56
I told him about Ivan,
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Ivan-ek autismoa zuela esan nion,
04:59
that he had autism,
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eta kalean zehar bakarrik
ibiltzen ikas zezala nahi nuela,
ibiltzen ikas zezala nahi nuela,
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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inork eskutik heldu gabe.
Eta hau galdetzera adoretu nintzen,
05:08
So I decided to ask Jose
if Thursdays around 2pm,
if Thursdays around 2pm,
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ea ostegunetan, arratsaldeko ordubietan,
Ivan joan ote zitekeen
ur botil apalak txukuntzera,
ur botil apalak txukuntzera,
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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gauzak antolatzea gustuko zuelako,
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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eta saritzat, txokolatezko gailetatxo
batzuk erostea,
batzuk erostea,
05:23
which were his favorite.
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bere gailetatxo gustukoenak.
Segituan baietz esan zidan.
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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Eta horrela urte batean zehar,
05:34
Ivan would go to Jose's greengrocer,
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Ivan, Jose-ren dendara joaten zen,
05:37
help him arrange the shelves
of water bottles
of water bottles
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ur botilen apalak
antolatzen laguntzen zion,
antolatzen laguntzen zion,
etiketak guztiz lerrokatuta
gelditzen zirelarik
gelditzen zirelarik
05:40
with the labels perfectly
lined up on the same side,
lined up on the same side,
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milimetrikoki alde berdinerantz.
05:46
and he would leave happy
with his chocolate cookies.
with his chocolate cookies.
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Eta pozik joaten zen
bere txokolatezko gailetatxoekin.
05:56
Jose is not an expert in autism.
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Jose ez da autismoan aditua.
06:01
There is no need to be an expert
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Ez da beharrezkoa ezertan aditua izatea,
06:05
nor do anything heroic to include someone.
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ezta izugarrizko ekintzak
egitea beste norbait sartzeko.
egitea beste norbait sartzeko.
06:12
We just need to be there --
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Soilik, bertan egon behar gara--
(Txaloak)
06:14
(Applause)
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06:22
(Applause ends)
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Horrela da,
ez da izugarrizko ekintzarik.
ez da izugarrizko ekintzarik.
06:25
Really, no heroic deed --
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06:28
we simply need to be close.
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Soilik gertu egon behar gara.
06:33
And if we are afraid of something
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Eta zerbaitek beldurtzen bagaitu,
06:36
or we don't understand something,
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edo ez badugu ulertzen, galdetu dezagun;
06:38
we need to ask.
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jakingura izan dezagun,
06:41
Let's be curious
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06:44
but never indifferent.
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baina ez gaitezen
axolagabeak izan.
axolagabeak izan.
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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Begietara begiratzeko adorea izan dezagun,
zeren eta gure begiradarekin,
06:56
because by looking,
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beste mundu bat ireki diezaiokegulako
beste norbaiti.
beste norbaiti.
06:58
we can open a whole world to someone else.
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(Txaloak)
07:03
(Applause)
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07:05
(Cheers)
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(Txaloak)
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