Friday 30 September 2016

How Disney films gave an autistic child his voice back

The remarkable documentary 'Life, Animated' tells the true story of a boy who lost the ability to speak - until he was rescued by 'The Little Mermaid'

William Leith

Published 23/04/2016 | 02:30

Trip of a lifetime: Owen Suskind, subject of the documentary Life, Animated, during a childhood trip to Disney World (courtesy of Ron Suskind)
Trip of a lifetime: Owen Suskind, subject of the documentary Life, Animated, during a childhood trip to Disney World (courtesy of Ron Suskind)

In November 1993, when he was two-years-old, something mysterious happened to Owen Suskind. His parents, Ron and Cornelia, have been trying to make sense of it for more than two decades. One day, he was like any normal toddler; Ron has a videotape to prove it.

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In the tape, Ron and his son are enacting a scene from Disney's Peter Pan. Owen, a big fan of Disney cartoons, has a toy sword. He pretends to kill Ron. His father, then a 33-year-old national affairs reporter for the Wall Street Journal, falls over.

"A month later,"' Ron Suskind writes in Life, Animated, his book about Owen, "the boy vanished."

Suskind and his wife, Cornelia, have watched the tape over and over again. The way Suskind describes it is heartbreaking. "It's a last sighting of him," he says.

But Owen was not kidnapped or taken in a physical sense. As we discover in Suskind's book - now an acclaimed film by the director Roger Ross Williams - it was his mind that seemed to disappear. Talking to me on the phone from his home in Washington DC, Suskind takes me back to 1993.

"Something's wrong," he says. "He's not looking at you. He seems unhappy. He's crying a lot. He was never a big cryer. And then we find, a few weeks after that, he's losing speech.

"About two months along, he has lost the usual two-and-half-year-old vocabulary of 200 words. He's down to a single word: 'juice'. And he's walking around like someone with their eyes shut. He's losing motor function."

The Suskinds were terrified. "We're like, what's happening? Kids don't grow backwards."

But very occasionally, they do. Owen had "regressive autism", a condition in which the symptoms of autism present themselves when the child is a toddler. This happens to about a quarter of people with autism.

For a while - somewhere between 15 and 30 months - they are doing what most toddlers do: learning to interact, reading facial expressions and processing language. And then something changes. "The cruelty of regressive autism," Suskind tells me, "is that the child feels to be present, chatting away, at one-and-a-half, or two. And then they vanish."

We still don't know what causes autism, or the exact mechanism that drives it. The term is derived from the Greek word for "self", because autism appears to be a retreat into the self. About one in 100 people in Ireland have the condition.

For Ron and Cornelia, the next three years were difficult. They had another son, Walt, a couple of years older than Owen. Walt was "neurotypical" -­ a normal kid. Meanwhile, Owen was still locked­ in. He was finding it very hard to communicate. That's the crucial problem with autism: communication.

As Steve Silberman, author of NeuroTribes, writes, "autistic people struggle to make sense of social signals in real time."

The Suskinds tried to treat Owen in various ways. They sent him to "the largest and best school for kids with disabilities in the area." Ron describes a day in 1994 in which Cordelia "drove Owen to school, picked him up at midday, and drove him to intense speech and language therapy and then occupational therapy. None of it seems to be doing much good."

Between the ages of three and six, Owen would wave his hands around and talk what appeared to be nonsense. Then he'd go up to his bedroom, where he would watch Disney films for hundreds of hours. He would rewind the tape and repeat watching scenes.

Then one day, at the age of six, Owen was watching The Little Mermaid. He grabbed the remote to replay a scene. In the scene Ursula sings the lines: "It won't cost much/Just your voice!" The song is about a character who loses their voice. Owen pressed rewind again. Then he said: "juicervoice!"

His family realised he was trying to say something. He was using the Disney film to communicate it.

Owen kept saying the word: "Juicervoice! Juicervoice!" Maybe it wasn't his thoughts that had gone missing, but just his ability to communicate them. Just his voice.

Ron and Cordelia talked to a speech therapist who suggested it might not be proper communication - maybe it was echolalia - when someone hears a word and repeats it. This is what babies do. It's also common for people with autism.

But had there been something more? Owen had been concentrating on a particular scene. He'd rewound the tape.

Another day, Owen had been watching Beauty and the Beast. Again, he'd been saying something over and over - a line from the film - "bootylyzwitten". The actual words from the cartoon were: "beauty lies within".

The real breakthrough came a few weeks later on Walt's ninth birthday, when Owen said, "Walter doesn't want to grow up, like Mowgli or Peter Pan."

Later that day, Suskind went up to Owen's bedroom. He spotted a puppet of Iago, the parrot from the Disney cartoon Aladdin. Then Suskind had an idea that would change his life, and Owen's life, and possibly the lives of countless people on the autism spectrum. He put his hand into the puppet and began talking to his son in Iago's voice.

He said: "How does it feel to be you?" Owen said, "I'm not happy. I don't have friends. I don't understand what people say."

In the film, we see Owen and Ron many years later. Owen is now in his early 20s. But they re­enact the scene. As they do, a penny drops. We see an essential truth about autism - it's not that the thoughts are missing, it's the communication. So you have to find a creative way to communicate - Owen's was using Disney cartoons.

Today, he's grown up and he can talk. Maybe he's not like a regular person, but what, in any case, is a regular person?

Suskind and others are beginning to think about that process. They are calling it Affinity therapy. Lots of people on the autistic spectrum develop affinities. It might be with games, or books,­ or, in the case of Owen Suskind, Disney cartoons. And these people can be reached through their affinities.

Suskind says, "People say, oh that kid, the kid who memorised all the Disney movies. I've heard about him. He's one in a million! I think we're going to find, as the years pass, he's one​ of ​a million. One of many millions in the discard pile."

For Ron Suskind, the last 20 years have been hard. But now Owen has friends. A girlfriend. He'll never have a regular life, but he has a good life.

"Who decides?" asks Suskind. "Who decides what the meaningful life is? Every time I say that, I well up with emotion."

'Life, Animated' will be released in Ireland later in the year

Irish Independent

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