WASHINGTON — Imagine waking up one day and your toddler, who you once described as energetic and chatty, is suddenly the opposite. He is withdrawn, lacks motor function and his expanding vocabulary has shrunk to one word: juice.
That was the reality Ron Suskind and his wife, Cornelia, faced with their son, Owen, more than 20 years ago.
“Cornelia and I said, ‘This doesn’t make sense. Kids don’t grow backwards,’” said Ron Suskind, a Pulitzer Prize winning journalist, author and former senior national affairs reporter for The Wall Street Journal.
“We just tried to think what it could be, and soon we heard the word: autism.”
Owen was diagnosed with regressive autism around the age of 3 — a form of autism that affects about one-third of those on the spectrum.
In many ways, Owen “just kind of vanished,” Ron said. But there was one place where he showed signs of engagement: in front of a small TV watching Disney movies.
Over and over, Owen watched “The Little Mermaid,” “Beauty and the Beast” and “Aladdin.” He studied the characters in “The Lion King” and “Dumbo,” and one day started talking, repeating phrases from the movies. Eventually, he began associating with the animated characters and used their experiences to make sense of his world.
“I would say more than anything, it was his motivation. Those films acted as his motivation to reach out to us, to develop language, to learn how to read,” Cornelia said.
Realizing that the movies were a way to connect to Owen, the whole family threw themselves into Owen’s own wonderful world of Disney. Each night, they would watch films together in the basement, and even communicate to Owen as characters from the films.
One of Ron’s major breakthroughs with Owen was when he approached the small boy as Iago, Jafar’s evil sidekick in the movie, “Aladdin.” That night, Owen shared his emotions with his father and laughed for the first time in years.
“By day, I’m interviewing presidents, and then at night the family’s together playing out characters,” Ron said. “It was joyful. And Owen was leading the way … it was a double life we lived, in our hometown of D.C.”
Owen’s pediatrician attributed the success of “Disney therapy,” as the family called it, to the dependable nature of the films. There were always bright colors, there was always music and the characters always pranced around with exaggerated expressions on their faces.
“They drew Owen in and they were always the same,” Cornelia said. “Every time he put in a movie, he could count on that character being exactly the same.”
However, Owen’s parents say the success came from using his one passion as a pathway to reach their son.
“It became very clear that this technique that we used is really successful for so many kids on the spectrum — tapping into their affinity, the thing that they love, the thing that brings them joy,” Cornelia said.
To help other parents reach their autistic children, the Suskinds worked with researchers to develop the app, Sidekicks (named by Owen and his love for all the sidekicks — good and evil — to Disney’s main characters). Using the app, adults can speak to a child through an avatar on a phone or computer screen, much like how the family spoke to Owen as Disney characters all those years.
Ron also wrote a documentary and book about Owen’s journey, called “Life, Animated,” in which Owen is the leading man, not a sidekick. So far the film, directed by Roger Ross Williams, has won awards and recognition at several festivals, including Sundance.
Ron says Owen is very much aware of his challenges, but he confronts them, head-on. He currently lives in his own condo in a supported independent community and works a few different part-time jobs, one of which is at a movie theater — “Of course,” Ron said.
More than anything, Cornelia says she hopes “Life, Animated” gives a new image to autism. “And that people will see those with autism for who they are in their fullness.”
“This reframes conventional ideals about autism. And that’s our goal, and I think it’s happening,” Ron said.
“Owen is a very vivid example of what’s possible if you live an animated life, which is what he has taught us to do.”
“Life, Animated” is currently playing at Bethesda Row Cinema. Watch the trailer below:
