“Juicervose.”
When Owen Suskind first uttered that word in 1994, he was a 3-year-old slipping deeper by the day into what doctors now call regressive autism. A high-spirited, exuberant boy just the year before, Owen abruptly and dramatically stopped, in every sense of the word. He suddenly refused to make eye contact with his parents or older brother. He was given to waking in the night, eventually unable to sleep the entire night through. His speech spiraled into repetitive gibberish, his final discernable word being “juice.”
So on that November evening in 1994 when Owen began babbling “juicervose” while the family tried to watch a Disney movie, they didn’t think much of it at first.
But as Owen rewound and replayed a particular 20 seconds from “The Little Mermaid,” it became clear to his mother, Cornelia, that Owen was trying to talk.
“Juicervose” turned out to be a snippet Owen fixated on from a song in “The Little Mermaid,” when Ariel is bargaining with Ursula the sea witch to become human.
“I’m a very busy woman and I haven’t got all day,” Ursula sings in the film. “It won’t cost much — just your voice.”
“It was the first time he looked at me in a year,” Owen’s father, Ron Suskind, says in the new Sundance Film Festival documentary about Owen’s journey, “Life, Animated.” “I thought, ‘He’s still in there.’”
But as the film documents, which is premiering this month at Sundance, the league of therapists and doctors trying to help Owen quickly dismissed the Suskinds’ newfound hope that this momentary connection with their son meant anything. It was just echolalia, they said — Owen was just repeating something that amused him, like a parrot.
The Suskinds were undeterred and began using dialogue from Disney films to talk to Owen, eventually enlisting the help of therapists who would use the films to help Owen relate to the world around him.
The film, directed by former journalist Roger Ross Williams, documents how far Owen (now 23) has come, living his own independent life with the help of Disney characters.
“The film is really a classic coming-of-age story,” Williams said. “(Owen) develops through these films a deep understanding of the human condition, the ability to analyze these films and understand what lessons we learn from the story.”
It’s common for children and adults with autism spectrum disorder to develop so-called “obsessions,” or intense interests that completely absorb and focus the patient. Ron Suskind, who wrote the book the documentary is based on, has since coined a different term for these interests: Affinities.
In light of Owen’s incredible transformation using his affinity for Disney films, researchers at Yale, Cambridge, MIT and elsewhere are studying affinities as a potential expansion in therapy to help others on the spectrum.
Williams’ hope is that Owen’s story may lead to a happier ending for other families longing for a look, a smile or even a conversation with their autistic child.
“Owen has this gift and (Ron and Cornelia) could ignore it or embrace it. They went against everything told and they nurtured it,” Williams said. “What it shows is that, if nurtured, (people with autism) have so much to contribute to the world.”
Learning to live
Affinities are only now being explored as a way to connect with autistic children because, before Suskind’s book, autistic “obsessions” were widely considered a hindrance to other therapies that help autistic people develop social skills.
“It was thought that people with autism were indulging in these interests and topics that were non-social and that might be taking them out of the social world,” Yale University psychologist and developmental neuroscientist Kevin Pelphrey said. “People are still concerned about that.”
Because autistic children often lack social skills — for example, not making eye contact, refraining from speaking or not always showing emotion — affinities were seen as something that, if overindulged, could cause the child to regress further and become more antisocial, choosing to interact exclusively with their interests rather than people.
“Autistic children develop affinities the way any other kid develops an interest or a skill,” Pelphrey said. “What’s unique about affinities is the kids use them for another purpose besides just being interested in it and they go on to use them in a way typical kids don’t. That’s unique to autism, we think.”
As Williams’ film shows, traditional social therapy for autism often involves “scripts,” or verbal roadmaps to help them get along in the real world, whether it’s making polite chit chat or asking for help when needed. A therapist presents a patient with a statement or a problem and helps the patient come up with appropriate responses.
One of Owen’s therapists, Dan Griffin, says Owen’s affinity for Disney naturally lent itself to scripting and helping Owen develop skills like problem solving and empathy for others.
“Owen’s parents were already using these films as a way of accessing different parts of Owen. My piece was using the pantheon of these Disney heroes as a way of expanding Owen’s interior life,” Griffin said. “We’d say, OK this isn’t in the script, but how would (a Disney character) deal with this situation? Rather than limit his affinity, this was kind of a win-win.”
In one scene from “Life, Animated,” Owen and his friends attend the Disney film club he started at his school. As Owen and his friends watch Simba chase a heavenly vision of his dead father, Mufasa, across the savannah of “The Lion King” in rapt silence, it’s clear they’re not simply being entertained.
After the film, the group weaves the fiction they’ve just seen into real life lessons.
“It’s important that when parents can no longer help us that we figure things out by ourselves,” Owen says.
The films also help Owen make sense of new feelings and experiences as they’re happening to him.
In “Life, Animated,” Owen persuades his father to watch three scenes from “Dumbo” to boost his resolve on the day he’s slated to move into his first apartment. Owen smiles, watching the baby elephant dive fearlessly from ledges, convinced the crow’s feather clenched in his trunk will keep him from falling.
That night — the first night of his entire life alone in a place of his own — Owen curls up in bed, cradling his laptop in the dark, watching Bambi walk alone through the empty, snow-blanketed forest, calling in a little boy’s voice, “Mother, where are you?”
Still developing
While Owen’s case is inspirational and revelatory for him and his family, Pelphrey and Griffin warn parents of autistic children that a lot of research still has to be done to test the potential and limits of affinities, including the severity of a child’s diagnosis.
“We have a saying that if you’ve seen one kid with autism, you’ve seen one kid with autism — there’s no one single thing that’s the answer, that’s why therapy has to be individualized for them,” Griffin said. “An affinity can be a big slice of the pie, but you’ve got to think of it as a component, not as, ‘This is the way.’”
Experts still don’t agree on whether affinity therapy is the future of autism treatment or just an anomaly of a few cases like Owen’s.
“In the whole field of psychology, autism is probably the closest to religion,” Griffin said. “Everyone has super strong opinions about what you should and shouldn’t do. And that’s true of affinities, too.”
Pelphrey and his team at Yale still have a year left studying how affinities may create learning pathways in the brain using an MRI machine. Some other forms of therapy, such as the popular “Floortime” approach, already use children’s interests to help encourage connection, but in a more limited way. If science can show how affinities physically activate the brain, Pelphrey says therapists could use the information to create a new formal therapeutic technique harnessing the child’s focus and enjoyment of the affinity.
“The concept is an empowering one. If that’s all it is, that’s still exciting,” Pelphrey said. “The difference is in taking it seriously because this person has developed this as a way to connect. Instead of stamping it out, we should try to utilize it.”
Pelphrey said it’s also important to note that some affinities may be harder than others to use as a connection. Disney movies are easy to integrate into social therapy compared to other common affinities like train schedules, maps or a particular toy.
Even when an affinity fits well into therapy, there are some things that can’t be learned except through experience. There are few Disney scenes to help Owen understand the end of his years-long relationship with his girlfriend, Emily, but the films can help him find his own place in the world. And that’s a huge first step.
“‘The Hunchback of Notre Dame’ doesn’t end like a lot of movies,” Owen tells a conference of French affinity researchers in the film. “Quasimodo doesn’t get the girl, but he’s welcomed into society. That’s kind of what happened to me.”
Email: chjohnson@deseretnews.com
Twitter: ChandraMJohnson