Monday, March 10, 2014

The Autistic Sidekick

The New York times magazine recently published a piece by journalist and author Ron Suskind about his son Owen's struggles with autism. Until the age of three, Owen was a typically chatty and curious boy, but something flipped inside him, causing him to develop something diagnosed as regressive autism.

While much of what Owen was up to that point appeared to vanish, a connection remained between the boy and the Disney movies he loved as a toddler. Through those movies, Owen learned to navigate the world and form connections with others and himself.
So we join him upstairs, all of us, on a cold and rainy Saturday afternoon in November 1994. Owen is already on the bed, oblivious to our arrival, murmuring gibberish.... "Juicervose, juicervose." It is something we've been hearing for the past few weeks. Cornelia thinks maybe he wants more juice; but no, he refuses the sippy cup. "The Little Mermaid" is playing as we settle in, propping up pillows. We've all seen it at least a dozen times, but it's at one of the best parts: where Ursula the sea witch, an acerbic diva, sings her song of villainy, "Poor Unfortunate Souls," to the selfish mermaid, Ariel, setting up the part in which Ursula will turn Ariel into a human, allowing her to seek out the handsome prince, in exchange for her voice.

When the song is over, Owen lifts the remote. Hits rewind.

"Come on, Owen, just let it play!" Walt moans. But Owen goes back just 20 seconds or so, to the song's next-to-last stanza, with Ursula shouting:

Go ahead -- make your choice!

I'm a very busy woman, and I haven't got all day.

It won't cost much, just your voice!

He does it again. Stop. Rewind. Play. And one more time. On the fourth pass, Cornelia whispers, "It's not 'juice.' " I barely hear her. "What?" "It's not 'juice.' It's 'just' ... 'just your voice'!"

I grab Owen by the shoulders. "Just your voice! Is that what you're saying?!"

He looks right at me, our first real eye contact in a year. "Juicervose! Juicervose! Juicervose!"

Walt starts to shout, "Owen's talking again!" A mermaid lost her voice in a moment of transformation. So did this silent boy. "Juicervose! Juicervose! Juicervose!" Owen keeps saying it, watching us shout and cheer. And then we're up, all of us, bouncing on the bed. Owen, too, singing it over and over -- "Juicervose!" -- as Cornelia, tears beginning to fall, whispers softly, "Thank God, he's in there."

The result of this interaction is a lifelong commitment to helping Owen express himself and learn about the world through something his parents call "Disney therapy."

This is one of the best articles I've read in a long time. So inspiring, heartbreaking, and beautiful. The article is excerpted from a book by Suskind, Life, Animated, that's due out on April 1st.

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