Updated: 18th December 2017

How Disney gave voice to a boy with autism

As a young boy, Owen Suskind suddenly stopped talking. Diagnosed with autism, he remained largely silent until an obsession with Disney movies unexpectedly gave him a voice

Near the beginning of the new documentary Life, Animated, there is a home movie filmed by Cornelia Suskind in November 1993. Her husband, Ron, is playing in the garden of their old house with their son Owen, a little boy with dark curly hair and a winning smile. He is waving atoy sword, and Ron asks him, Owen, who are you? Owen grins up at his dad and replies, Im Peter Pan and youre Captain Hook. Together they tumble and play fight in the autumn leaves.

Shortly after that day, Owen stopped talking, became very unhappy and alsobegan to lose his motor skills; Ron describes seeing him weaving around like someone walking with his eyes closed. They knew something was badly wrong after all, as Ron puts it, Children dont grow backwards. Thefirst paediatrician they saw was puzzled, and referred them to a specialist, who in January 1994 diagnosed Owen with autism.

His parents describe those first few months, filled with confusion and fear, as the worst time intheir lives. Owen had so many alarming behaviours although luckily he was never violent or aggressive, says Cornelia. I feared that he would never speak, that we would be taking care of him for his entire life.

The Suskinds have never found out what caused Owen to lose so many skills, but rather than dwell on possible causes they devoted themselves to exploring every therapy on offer. Rons new position onthe Wall Street Journal meant that Cornelia, also a journalist, could just about afford not to work. Instead, she organised and took part in a range of therapies for Owen. She also home educated him for a couple of years when the right school proved elusive. The family assembled a team of specialists to support them and give advice. Progress was painfullyslow.

Many children with autism have favourite interests or activities that they never tire of repeating and which can appear to get in the way of them learning new skills or engaging with others. In Owens case, his obsession was Disney. Despite his motor problems, he mastered the remote control for the familys video recorder and loved to watch the same films over and over again, particularly The Little Mermaid and Peter Pan. He often rewound the same scene repeatedly. Uncomfortable in noisy, unpredictable social situations, watching a video together was one of the few activities that the whole family could share and enjoy. They sat through Dumbo so many times that Cornelia once joked, If I have to watch it one more time, Im going to run away and join the circus!

But their professional advisers were not happy about Owens repetitive viewing habit, believing it restricted his development and contributed to his isolation. His parents were advised to limit his screen time and Cornelia put padlocks on the TV and video and rationed his viewing time and worked hard at speech therapy. By six, Owen could put together a simple three-word sentence to make a request, with a lot of prompts. But he still mainly spoke ingibberish with the occasional movie phrase and seemed disengaged from the world around him. His parents constantly wondered what wasgoing on in his head and worried about his future.

Cornelia
Cornelia and Ron with Owen and his brother Walter. Photograph: Courtesy of the Suskind family

It was the evening of his older brother Walters ninth birthday that a breakthrough came. Walterwas a bit tearful and Owen suddenly said, Walter doesnt want to grow up like Peter Pan and Mowgli. It was the most complex, insightful sentence hehad ever spoken. Ron grabbed thepuppet of Jafar, one of Owens favouritecharacters from Aladdin and mimicking Jafars voice, asked him, How does it feel to be you? Owen answered in his own voice, Im not happy. I dont have friends. I cant understand what people say. From then on, it was as if a door had opened into Owens world. Ron says, He was just shy of seven, and we realised that he was using these movies to interpret our world, the world we are all living in.

From then on, his family stepped into the movie world with him. They would all watch a movie together and impersonate the Disney characters; they would use familiar film dialogue to help Owen navigate tricky situations or understand social challenges. School and the professionals supporting them were very sceptical, worrying that theywere indulging Owens repetitive behaviours, but the Suskinds found an ally in a psychologist, Dan Griffin.

Griffin saw the powerful emotional engagement and energy that came out in sessions where the family re-enacted movies. He ended up incorporating Owens passion for movies into social and role-playing therapy sessions, and he and the Suskinds now believe that intensive, heartfelt immersion into thespecial interest or affinity of achild with autism can be a way to help them connect.

The jury is out on whether affinity therapy could work in all cases. It mayrely too much on the child having typical cognitive abilities in the first place and may not work with those who have severe learning difficulties as well as autism. It also requires a willingness to become as genuinely expert in the special interest as the child and to provide intensive one-to-one input.

But Ron says, Maybe well also find more autistic children who struggle with the physical aspects of speech or motivation and therefore have been hard to assess for cognitive capacity, but in those cases, maybe we can find ways for them to communicate using digital devices, like Stephen Hawking. My feeling, and some of this is born of exposure to other autistic kids, was that the thing that makes the difference is seeing the affinity as a map, a code-breaker, almost like a vessel that you need to board with them.

The Suskinds know that not every family who has a child with autism can afford to devote the intense time they gave Owen, or assemble a team of supportive therapists. Cornelia says: It is a luxury that most people dont have and I am continually trying to advocate and push for legislation in the US that makes insurance more fair so that other families are able to get access to therapy. She and Ron are also working with a software team and neuroscientists at Harvard developing an online programme called Sidekicks (named after Owens favourite type of film characters), which can be tailored to an individual childs special interest and give them support and guidance through a phone app.

Interest in affinity therapy has grown since Rons book about Owen Life, Animated was published in 2014. For Cornelia, it wasnt an easy decision to go public: I am a very private person, and Ron as a journalist who appears on TV is a very public person. Years before, he thought about writing something, and I said, No way,we are too in the trenches, we aretoo involved. And there is no chance that Iwould allow you to write something about Owen without his full participation, I just think it would be exploitative. But then Owen came to us when he was about 19 and said, Mom, I wish people understood who I was. They dont know who I am. They dont understand people like me. Ron said, Would you like me to describe to people who you are? And he said, Yes, I want people to know people like me. I am more than I appear. I am an unpolished gem, a diamond in the rough. Thats from Aladdin, of course.

Cornelia felt their story would be helpful to parents who found themselves as baffled by autism as they had been. It was so important to us that the book was completely honest and there was tons of stuff in there that Ireally blanched at. But then I thought if we dont put the real stuff in, if we were not completely honest, it wouldnt ring true to anyone who has akid with autism. You can totally tell when someone is sugar-coating something, and that in my opinion is the worst possible thing.

The books publication led the filmmaker Roger Ross Williams, who had won an Oscar in 2010 for his short documentary about a group of young disabled musicians in Zimbabwe, to approach them about making a film. Owens parents were fiercely protective of Owen, but, as journalists, they knew they could not have editorial control of the film as they had had with the book. But they trusted Williams and laid down some ground rules. Cornelia says, I knew if there was something difficult he wanted to film, Roger would discuss it with us. He is a very open, kind, intelligent man and I knew he wouldnt manipulate Owen. And Owen could always say if he didnt want him there, but he never did.

Owen
Owen with his parents this year. Photograph: Nicholas Hunt

The documentary weaves together amixture of interviews, home-movie footage, Disney clips and specially commissioned animation to tell the books story. But Williams wanted to take Owens story further, and filmed with him over a critical year. He was 23, and moving into his own apartment, looking for work and going through his first romantic relationship. The result is a heart-warming and fascinating portrait of a proud autistic man, as Owen describes himself in a scene where he addresses a research conference. Owen dreams of being a Disney animator one day and we see the character animations he has drawn, and a glimpse of his 2,000-word screenplay, The Land of the Lost Sidekicks. He holds down three part-time jobs and runs a Disney club for his friends, and posts on YouTube. It is an amazing journey from the child who couldnt speak or hold a pencil.

Looking back, Cornelia wishes she had known then what she knows now. While theres no substitute for early intervention therapy, maturation is an underrated friend for people on the spectrum. I never expected to see him continue to develop so much. Hes nowin his mid-20s and its just been astonishing. His fluidity of speech, his ability to grasp things, his ability to connect with his feelings and to express them, that exponential progress has come about in the last few years.

When he was a child, I lived with this burden that every moment counts. I had to be doing something productive to encourage language at every moment or everything was lost the panic that Ilived with for years was not good andnot healthy. If theres one thing Iregret, its not feeling that I could allow myself to enjoy Owen. Finding the joy in your child and experiencing that with him is the most important therapy there is.

Since Life, Animated won best documentary at the Sundance festival, it has played extensively in the US. Owen has been to many screenings and is looking forward to doing Q&As in the UK this month when he comes here with his family. On the telephone from his new home, he told me what it was like to watch the film for the first time: I loved it! It was a little bit difficult to see my mom and dad talk about how worried they were about me when Iwas a boy that made me sad. Back then, I couldnt understand anyone when they talked to me. It was very weird. But I loved making the movie and I love doing the questions afterwards. People always ask me what my favourite Disney movie is, but I always say I love them all.

Life, Animated is on tour with Q&As featuring the Suskind family and director Roger Ross Williams before general release on 9 December. The book of the same title by Ron Suskind is published by Turnaround, 11.99. To order a copy for 9.83,go tobookshop.theguardian.comorcall the Guardian Bookshop on0330 333 6846. Free UK p&p over 10, online orders only. Phone orders min. p&p of 1.99.

Read more: https://www.theguardian.com/lifeandstyle/2016/dec/03/how-disney-gave-voice-to-a-boy-with-autism

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