TEDxRiodelaPlata
Carina Morillo: To understand autism, don't look away
Carina Morillo: Para entender el autismo, no quites la mirada
Filmed:
Readability: 2.9
673,429 views
Carina Morillo no sabía casi nada sobre el autismo cuando su hijo Ivan fue diagnosticado, sólo que él no hablaba ni respondía a las palabras y que ella tenía que encontrar sus maneras de conectarse con él. Carina narra cómo aprendió a ayudar a su hijo a realizarse compartiendo con él la curiosidad.
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.
"¡Mirame!"
00:13
"Look at me!"
0
1278
1379
00:16
That phrase turned me
into an eye-contact coach.
into an eye-contact coach.
1
4676
4625
Con esa palabra me convertí
en entrenadora de miradas.
en entrenadora de miradas.
00:22
I'm the mother of Ivan; he's 15 years old.
2
10795
2944
Soy la mamá de Ivan, de 15 años.
00:26
Ivan has autism,
3
14519
1944
Ivan tiene autismo, no habla,
00:28
he doesn't speak,
4
16487
1545
00:30
and he communicates through an iPad,
5
18056
1990
y se comunica a través de un iPad
00:32
where his whole universe of words
exists in images.
exists in images.
6
20070
3872
donde está todo su universo
de palabras en imágenes.
de palabras en imágenes.
Recibimos su diagnóstico
cuando tenía dos años y medio
cuando tenía dos años y medio
00:37
He was diagnosed
when he was two and a half.
when he was two and a half.
7
25947
4542
00:43
I still remember that day painfully.
8
31707
4013
y todavía hoy, me acuerdo
de ese momento con mucho dolor.
de ese momento con mucho dolor.
00:49
My husband and I felt really lost;
9
37479
2733
Con mi marido nos sentíamos muy perdidos.
00:53
we didn't know where to begin.
10
41489
2178
No sabíamos por dónde empezar.
No había Internet como ahora,
00:56
There was no internet,
11
44940
2425
no se podía googlear información,
00:59
you couldn't Google information,
12
47389
2430
01:02
so we made those first steps
13
50705
1977
así que esos primeros pasos
fueron de pura intuición.
01:05
out of sheer intuition.
14
53619
2126
01:09
Ivan would not maintain eye contact,
15
57849
2090
Ivan no sostenía la mirada,
01:13
he had lost the words that he did know,
16
61011
2249
había perdido las palabras que decía,
01:16
and he didn't respond to his name
or to anything we asked him,
or to anything we asked him,
17
64284
3977
no respondía a su nombre
ni a nada que le pidiéramos,
como si las palabras fueran ruidos.
01:21
as if words were noise.
18
69069
2287
01:25
The only way I could know
19
73467
3908
La única forma que yo tenía
de saber lo que a él le pasaba,
01:30
what was going on with him,
20
78017
1618
lo que él sentía,
01:32
what he felt,
21
80303
1499
01:34
was looking him in the eye.
22
82337
1859
era mirándolo a los ojos.
Pero ese puente estaba roto.
01:37
But that bridge was broken.
23
85809
2153
¿Cómo enseñarle la vida a Ivan?
01:42
How could I teach him about life?
24
90621
2431
01:47
When I did things he liked,
he would look at me,
he would look at me,
25
95519
3908
Cuando yo hacía cosas
que a él le gustaban,
que a él le gustaban,
allí sí, me miraba;
01:51
and we were connected.
26
99451
1534
y estábamos juntos.
Así que me dediqué
a seguirlo en esas cosas,
a seguirlo en esas cosas,
01:53
So I dedicated myself
to working with him on those things,
to working with him on those things,
27
101885
3568
para que cada vez hubiera
más y más momentos de miradas.
más y más momentos de miradas.
01:57
so we would have more and more
eye-contact moments.
eye-contact moments.
28
105477
4329
Nos pasábamos horas y horas
jugando a la mancha
jugando a la mancha
02:03
We would spend hours and hours playing tag
with his older sister, Alexia,
with his older sister, Alexia,
29
111290
6521
con su hermana mayor, Alexia,
y en esa ronda de: "¡Ay! ¡Que te atrapo!"
02:10
and when we said: "I caught you!"
30
118502
2617
02:14
he would look around for us,
31
122186
1694
nos buscaba con la mirada,
y yo allí, en ese momento,
sentía que él estaba vivo.
sentía que él estaba vivo.
02:16
and at that moment,
I could feel he was alive.
I could feel he was alive.
32
124970
4739
También, tenemos récord
de horas en la pileta.
de horas en la pileta.
02:25
We also hold a record for hours spent
in a swimming pool.
in a swimming pool.
33
133088
4927
Ivan siempre tuvo una pasión
muy fuerte por el agua.
muy fuerte por el agua.
02:31
Ivan always had a passion for water.
34
139182
3356
02:35
I remember when he was two and a half,
35
143834
2857
Me acuerdo de que tenía dos años y medio,
y un día de invierno, de mucha lluvia,
02:39
on a rainy winter day,
36
147761
3300
02:43
I was taking him to an indoor pool,
37
151085
2476
lo estaba llevando a una pileta cubierta,
02:45
because even on rainy days
we'd go swimming.
we'd go swimming.
38
153585
2650
porque ni siquiera esos días
dejábamos de ir.
dejábamos de ir.
Estábamos yendo por la autopista,
02:49
We were on the highway,
and I took the wrong exit.
and I took the wrong exit.
39
157823
3688
y me equivoqué de salida.
02:54
He burst into tears and cried
inconsolably, nonstop,
inconsolably, nonstop,
40
162295
3942
Y allí se largó a llorar,
desconsoladamente, sin parar,
desconsoladamente, sin parar,
hasta que retomé el camino
02:58
until I turned back.
41
166261
1520
y recién allí, se calmó.
03:00
Only then did he calm down.
42
168536
1622
¿Cómo era posible
03:03
How was it possible
that a two and a half year old
that a two and a half year old
43
171528
3696
que con dos años y medio
no respondiera a su nombre,
no respondiera a su nombre,
03:07
didn't respond to his own name,
44
175248
1807
pero en el medio de esa lluvia y neblina,
que yo no lograba ver nada,
que yo no lograba 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,
45
177851
4124
03:13
he knew the exact route?
46
181999
4306
él fuera capaz de reconocer
perfectamente el camino?
perfectamente el camino?
Allí me di cuenta de que Ivan tenía
una memoria visual excepcional,
una memoria visual excepcional,
03:21
That's when I realized that Ivan
had an exceptional visual memory,
had an exceptional visual memory,
47
189066
3440
y que esa iba a ser mi puerta de entrada.
03:25
and that that would be my way in.
48
193542
3400
Así que empecé a sacarle fotos a todo,
03:29
So I started taking
pictures of everything,
pictures of everything,
49
197827
2370
y enseñarle la vida así,
03:32
and teaching him what life was like,
50
200868
2146
mostrándoselas ... foto a foto.
03:35
showing it to him, picture by picture.
51
203038
3590
03:39
Even now, it's the way Ivan communicates
52
207758
4698
Y todavía hoy sigue siendo la forma
en la que Ivan nos cuenta
en la que Ivan nos cuenta
03:44
what he wants,
53
212480
1362
lo que él quiere, lo que él necesita,
03:46
what he needs
54
214311
1279
y también, lo que él siente.
03:48
and also what he feels.
55
216392
2390
Pero no solo estaba en la mirada de Ivan.
03:54
But it wasn't just
Ivan's eye contact that mattered.
Ivan's eye contact that mattered.
56
222023
3199
También estaba en la mirada de los demás.
03:58
Everyone else's did, too.
57
226932
1964
04:02
How could I make people see
not only his autism,
not only his autism,
58
230735
3990
¿Cómo lograr
que no solamente miraran a su autismo,
pero que lo miraran a él,
04:06
but see him the person
59
234749
1396
04:09
and everything he can give;
60
237312
1669
con todo lo que él puede dar?
04:12
everything he can do;
61
240316
1746
¿Con todo lo que él es capaz de hacer?
04:15
the things he likes and doesn't like,
62
243387
2638
¿Con las cosas que le gustan, las que no,
04:18
just like any one of us?
63
246049
1840
como a cualquiera de nosotros?
04:21
But for that, I also had
to give of myself.
to give of myself.
64
249311
3070
Pero para eso, yo también
tenía que poner de mi parte.
tenía que poner de mi parte.
Yo me tenía que animar a soltarlo.
04:25
I had to have the strength to let him go,
65
253794
2047
Y me costaba muchísimo.
04:28
which was extremely difficult.
66
256896
2059
Ivan tenía 11 años,
04:33
Ivan was 11 years old,
67
261297
1470
04:35
and he went for treatment
in a neighborhood near our house.
in a neighborhood near our house.
68
263755
3690
y hacía su tratamiento muy cerca
de casa, en otro barrio.
de casa, en otro barrio.
04:40
One afternoon,
while I was waiting for him,
while I was waiting for him,
69
268793
3431
Y una tarde, mientras
hacía tiempo esperándolo,
hacía tiempo esperándolo,
04:44
I went into a greengrocer,
70
272863
1336
entré en una verdulería,
04:46
a typical neighborhood store
with a little bit of everything.
with a little bit of everything.
71
274223
3269
típica verdulería de barrio
que tiene un poco de todo.
que tiene un poco de todo.
Y entre compra y compra,
04:50
While doing the shopping,
72
278428
1552
04:52
I started talking to Jose, the owner.
73
280004
3210
me puse a charlar con Jose, el dueño.
04:56
I told him about Ivan,
74
284942
1383
Le conté de Ivan, que tenía autismo,
04:59
that he had autism,
75
287057
1356
y que yo quería que él aprendiera
a caminar solo por la calle,
a caminar solo por la calle,
05:01
and that I wanted him to learn
to walk down the street by himself,
to walk down the street by himself,
76
289437
4268
05:05
without anyone holding his hand.
77
293729
2100
sin que nadie le sostuviera la mano.
Y me animé a preguntarle
05:08
So I decided to ask Jose
if Thursdays around 2pm,
if Thursdays around 2pm,
78
296875
3666
si los jueves a las dos de la tarde,
Ivan podría venir a ayudarlo a ordenar
los estantes de botellas de agua
los estantes de botellas de agua
05:13
Ivan could come and help him arrange
the water bottles on the shelves,
the water bottles on the shelves,
79
301509
3749
porque a él le encantaba ordenar,
05:17
because he loved to organize things.
80
305282
2315
05:19
And as a reward, he could buy
some chocolate cookies,
some chocolate cookies,
81
307621
3766
y de premio, comprarse
unas galletitas de chocolate,
unas galletitas de chocolate,
05:23
which were his favorite.
82
311411
1746
sus galletitas favoritas.
En seguida me dijo que sí.
05:27
He said "yes" right away.
83
315843
1500
05:30
So that's how it went for a year:
84
318815
3242
Y así fue como durante un año,
05:34
Ivan would go to Jose's greengrocer,
85
322081
2290
Ivan llegaba a la verdulería de Jose,
05:37
help him arrange the shelves
of water bottles
of water bottles
86
325312
3444
lo ayudaba ordenar los estantes
de botellas de agua
de botellas de agua
que quedaban con las etiquetas
perfectamente enfiladas
perfectamente enfiladas
05:40
with the labels perfectly
lined up on the same side,
lined up on the same side,
87
328780
5263
milimétricamente para el mismo lado.
05:46
and he would leave happy
with his chocolate cookies.
with his chocolate cookies.
88
334067
3607
Y partía feliz
con sus galletitas de chocolate.
05:56
Jose is not an expert in autism.
89
344054
2420
Jose no es experto en autismo.
06:01
There is no need to be an expert
90
349291
2811
No hace falta ser expertos en nada,
06:05
nor do anything heroic to include someone.
91
353212
3788
ni hacer ninguna hazaña
para incluir a otro.
para incluir a otro.
06:12
We just need to be there --
92
360084
1996
Simplemente tenemos que estar --
(Aplausos)
06:14
(Applause)
93
362515
1572
06:22
(Applause ends)
94
370942
1572
así es, ninguna hazaña.
06:25
Really, no heroic deed --
95
373737
1517
06:28
we simply need to be close.
96
376977
2292
Simplemente tenemos que estar cerca.
06:33
And if we are afraid of something
97
381948
1676
Y si algo nos da miedo,
06:36
or we don't understand something,
98
384511
2184
o no lo entendemos, preguntemos;
06:38
we need to ask.
99
386719
1249
seamos curiosos,
06:41
Let's be curious
100
389182
1680
06:44
but never indifferent.
101
392362
3160
pero nunca indiferentes.
06:50
Let's have the courage
to look each other in the eye,
to look each other in the eye,
102
398217
3550
Tengamos el valor de mirarnos a los ojos,
porque con nuestra mirada,
06:56
because by looking,
103
404386
2102
le podemos abrir un mundo a otro.
06:58
we can open a whole world to someone else.
104
406512
3073
(Aplausos)
07:03
(Applause)
105
411142
2398
07:05
(Cheers)
106
413564
2324
(Ovaciones)
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