“…this group seems typical until somewhere between 18 and 36 months — then they vanish. Some never get their speech back. Families stop watching those early videos, their child waving to the camera. Too painful. That child’s gone.”
But not entirely, as Ron Suskind details in a beautifully written piece for the New York Times. He reveals how his son, Owen, “disappeared” at the age of three.
“An engaged, chatty child, full of typical speech — “I love you,” “Where are my Ninja Turtles?” “Let’s get ice cream!” — fell silent. He cried, inconsolably. Didn’t sleep. Wouldn’t make eye contact.”
Owen was diagnosed with “regressive autism” which, as Suskind notes, affects a third of children with the disorder. And so the Owen they knew and loved was gone, his family left heartbroken.
After his diagnosis, the only thing Owen would do with his brother, Walt, was watch Disney movies. It’s something they did together before autism stole him from his family. New movies, the old classics — all of them. Walt would eventually tire of the movies and find something else to do, but Owen would stay, watching movie after movie, often rewinding, intently focused.
The first breakthrough with Owen happened during what was likely the 30th viewing of The Little Mermaid. For weeks, Owen had been mumbling the nonsensical word “juicervoce.” His parents thought maybe he wanted juice, but that wasn’t it. As they watched the epic scene in which Ursula the sea witch launches into her ditty “Poor Unfortunate Souls,” Owen was laser-focused. When the song ended he rewound it again. And again. And again.
And then, Owen’s mother, Cornelia, realized what “juicervoce” meant.
Within Ursula’s song are the following lines:
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!
Just your voice.
Her silent son had been talking. As Suskind tells the New York Times:
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.”
Suskind’s achingly beautiful article goes on to explain how Disney movies and the characters that populate them helped him and his wife communicate with a son who they thought was gone. In trying to figure out how their experiences with Owen can help others, Suskind has drawn the following conclusion:
There’s a reason — a good-enough reason — that each autistic person has embraced a particular interest. Find that reason, and you will find them, hiding in there, and maybe get a glimpse of their underlying capacities. In our experience, we found that showing authentic interest will help them feel dignity and impel them to show you more, complete with maps and navigational tools that may help to guide their development, their growth. Revealed capability, in turn, may lead to a better understanding of what’s possible in the lives of many people who are challenged.
Don’t let doctors overrule what you feel in your gut. The Suskinds faced all kinds of skepticism from therapists and pediatricians who felt like Owen was just mimicking what he saw and heard on the television. But one look at the video below and you will see what Ron and Cornelia Suskind see. A beautiful boy, now a man, underneath the autism.
Don’t give up on your children. They’re in there, waiting for you to find them.
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