TEDxRiodelaPlata
Carina Morillo: To understand autism, don't look away
Carina Morillo: Per capire l’autismo, mantenete il contatto visivo | Carina Morillo | TEDxRiodelaPlata
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Carina Morillo non sapeva quasi nulla dell’autismo, quando fu diagnosticato a suo figlio Ivan. Vedeva solo che lui non parlava, né rispondeva alle parole, quindi lei doveva trovare il modo di entrare in relazione con lui.
Carina racconta come imparò ad aiutare suo figlio a realizzarsi, condividendo con lui la curiosità.
Questo talk è stato presentato a un evento TED usando il format TED Conference. Per maggiori informazioni, visita il sito http://ted.com/tedx
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.
"Guardami"!
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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Con questa parola sono diventata
una allenatrice di sguardi.
una allenatrice di sguardi.
00:22
I'm the mother of Ivan; he's 15 years old.
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Sono la mamma di Ivan, che ha 15 anni.
00:26
Ivan has autism,
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Ivan ha i sintomi dell'autismo, non parla,
00:28
he doesn't speak,
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00:30
and he communicates through an iPad,
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e comunica attraverso un iPad,
00:32
where his whole universe of words
exists in images.
exists in images.
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dove c'è tutto il suo universo
di parole in immagini.
di parole in immagini.
Ricevemmo la sua diagnosi
quando aveva due anni e mezzo.
quando aveva due anni e mezzo.
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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Ancor oggi mi ricordo
quel momento, con molto dolore.
quel momento, con molto dolore.
00:49
My husband and I felt really lost;
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Insieme a mio marito
ci sentimmo davvero perduti.
ci sentimmo davvero perduti.
00:53
we didn't know where to begin.
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Non sapevamo da dove cominciare.
Allora non c'era internet,
00:56
There was no internet,
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non c'era il motore di ricerca Google.
00:59
you couldn't Google information,
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01:02
so we made those first steps
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Perciò i nostri primi passi
furono puramente intuitivi.
01:05
out of sheer intuition.
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01:09
Ivan would not maintain eye contact,
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Ivan evitava il contatto visivo,
01:13
he had lost the words that he did know,
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non parlava più,
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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non rispondeva al suo nome
né ad alcuna delle nostre domande,
come se le parole fossero solo rumori.
01:21
as if words were noise.
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01:25
The only way I could know
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L'unico modo che avevo
per sapere cosa gli succedeva,
01:30
what was going on with him,
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cosa sentiva,
01:32
what he felt,
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01:34
was looking him in the eye.
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era guardarlo negli occhi.
Però questo ponte era rotto.
01:37
But that bridge was broken.
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Come insegnare la vita 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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Quando facevo qualcosa che gli piaceva,
mi guardava
01:51
and we were connected.
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ed eravamo uniti.
Mi dedicai quindi
a seguirlo in queste cose,
a seguirlo in queste cose,
01:53
So I dedicated myself
to working with him on those things,
to working with him on those things,
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affinché ci fossero sempre
più momenti di contatto visivo.
più momenti di contatto visivo.
01:57
so we would have more and more
eye-contact moments.
eye-contact moments.
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Trascorrevamo ore e ore
giocando a nascondino
giocando a nascondino
02:03
We would spend hours and hours playing tag
with his older sister, Alexia,
with his older sister, Alexia,
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con sua sorella maggiore, Alexia,
e nel turno di: "Ti acchiappo!"
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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lui ci catturava con lo sguardo,
e io, in quel momento,
sentivo che era vivo.
sentivo che era vivo.
02:16
and at that moment,
I could feel he was alive.
I could feel he was alive.
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Abbiamo anche trascorso
ore immemorabili in piscina.
ore immemorabili in piscina.
02:25
We also hold a record for hours spent
in a swimming pool.
in a swimming pool.
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Ivan ha sempre avuto
una passione enorme per l'acqua.
una passione enorme per l'acqua.
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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Mi ricordo che,
quando aveva due anni e mezzo,
quando aveva due anni e mezzo,
in un giorno d'inverno,
con la pioggia a dirotto,
con la pioggia a dirotto,
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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lo stavo portando a una piscina coperta,
02:45
because even on rainy days
we'd go swimming.
we'd go swimming.
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poiché neanche in quei giorni
rinunciavamo ad andarci.
rinunciavamo ad andarci.
Eravamo in autostrada
02:49
We were on the highway,
and I took the wrong exit.
and I took the wrong exit.
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e io sbagliai uscita.
02:54
He burst into tears and cried
inconsolably, nonstop,
inconsolably, nonstop,
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E lui scoppiò a piangere,
sconsolatamente, senza smettere,
sconsolatamente, senza smettere,
finché ritrovai la direzione giusta
02:58
until I turned back.
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e, appena lì, lui si calmò.
03:00
Only then did he calm down.
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Com'era possibile
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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che, a due anni e mezzo,
non rispondeva al suo nome,
non rispondeva al suo nome,
03:07
didn't respond to his own name,
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ma nel mezzo di pioggia e nebbia,
in cui io non riuscivo a vedere niente,
in cui io non riuscivo a vedere niente,
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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lui fosse capace di riconoscere
perfettamente il percorso?
perfettamente il percorso?
In quel momento capii che Ivan
aveva una memoria visiva eccezionale,
aveva una memoria visiva eccezionale,
03:21
That's when I realized that Ivan
had an exceptional visual memory,
had an exceptional visual memory,
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che sarebbe stata la mia porta di accesso.
03:25
and that that would be my way in.
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Iniziai così a fare foto di tutto,
03:29
So I started taking
pictures of everything,
pictures of everything,
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insegnandogli la vita così,
03:32
and teaching him what life was like,
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mostrandogliela... foto per 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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Ancor oggi è la forma
con cui Ivan ci racconta
con cui Ivan ci racconta
03:44
what he wants,
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che cosa vuole, di cosa ha bisogno,
03:46
what he needs
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ma anche quello che sente.
03:48
and also what he feels.
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Non c'era però solo lo sguardo di Ivan,
03:54
But it wasn't just
Ivan's eye contact that mattered.
Ivan's eye contact that mattered.
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ma anche lo sguardo degli altri.
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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Come ottenere
che non vedessero solo il suo autismo,
ma che guardassero lui,
04:06
but see him the person
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04:09
and everything he can give;
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con tutto quello che lui può dare?
04:12
everything he can do;
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Con tutto quello che è capace di fare?
04:15
the things he likes and doesn't like,
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Con le cose che gli piacciono, o meno,
04:18
just like any one of us?
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come a chiunque di noi?
04:21
But for that, I also had
to give of myself.
to give of myself.
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Però anch'io, per riuscirci,
dovevo fare la mia parte.
dovevo fare la mia parte.
Dovevo animarlo a smuoversi.
04:25
I had to have the strength to let him go,
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E mi costava moltissimo.
04:28
which was extremely difficult.
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Ivan aveva 11 anni,
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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era in terapia molto vicino a casa,
in un altro quartiere.
in un altro quartiere.
04:40
One afternoon,
while I was waiting for him,
while I was waiting for him,
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E una sera, mentre lo aspettavo,
04:44
I went into a greengrocer,
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entrai da un fruttivendolo,
04:46
a typical neighborhood store
with a little bit of everything.
with a little bit of everything.
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un tipico negozio di quartiere,
che vendeva di tutto.
che vendeva di tutto.
E fra un acquisto e l'altro,
04:50
While doing the shopping,
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04:52
I started talking to Jose, the owner.
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chiaccherai con Jose, il titolare.
04:56
I told him about Ivan,
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Gli raccontai di Ivan, che aveva l'autismo
04:59
that he had autism,
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e che volevo che imparasse
a camminare da solo per strada,
a camminare da solo per strada,
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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senza che nessuno lo tenesse per mano.
Trovai il coraggio di chiedergli
05:08
So I decided to ask Jose
if Thursdays around 2pm,
if Thursdays around 2pm,
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se i giovedì, alle due del pomeriggio.
Ivan poteva aiutarlo a riordinare
gli scaffali con le bottiglie di acqua,
gli scaffali con le bottiglie di acqua,
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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perché lo entusiasmava riordinare,
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 per ricompensa,
comprarsi dei biscottini di cioccolato,
comprarsi dei biscottini di cioccolato,
05:23
which were his favorite.
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i suoi biscottini preferiti.
Mi rispose subito di sì.
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 così, per un anno,
05:34
Ivan would go to Jose's greengrocer,
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Ivan andava dal fruttivendolo Jose,
05:37
help him arrange the shelves
of water bottles
of water bottles
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lo aiutava a riordinare
le bottiglie d'acqua,
le bottiglie d'acqua,
che rimanevano con le etichette
perfettamente allineate
perfettamente allineate
05:40
with the labels perfectly
lined up on the same side,
lined up on the same side,
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millimetricamente, sullo stesso lato.
05:46
and he would leave happy
with his chocolate cookies.
with his chocolate cookies.
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E usciva felice,
con i suoi biscottini di cioccolato.
05:56
Jose is not an expert in autism.
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Jose non è un esperto di autismo.
06:01
There is no need to be an expert
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Non è necessario essere esperti di nulla,
06:05
nor do anything heroic to include someone.
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né compiere imprese,
per includere gli altri.
per includere gli altri.
06:12
We just need to be there --
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Dobbiamo semplicemente stare...
(Applausi)
06:14
(Applause)
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06:22
(Applause ends)
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così... senza imprese.
06:25
Really, no heroic deed --
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06:28
we simply need to be close.
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Dobbiamo semplicemente stare vicini.
06:33
And if we are afraid of something
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E se qualcosa ci intimorisce,
06:36
or we don't understand something,
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o non lo capiamo, chiediamo;
06:38
we need to ask.
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siamo curiosi,
06:41
Let's be curious
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06:44
but never indifferent.
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però mai indifferenti.
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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Troviamo il coraggio
di guardarci negli occhi,
di guardarci negli occhi,
perché, con il nostro sguardo,
06:56
because by looking,
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possiamo aprire un mondo agli altri.
06:58
we can open a whole world to someone else.
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(Applausi)
07:03
(Applause)
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07:05
(Cheers)
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(Ovazioni)
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