Inside One Autistic Boy's Disney World

Just before Owen Suskind’s third birthday, his parents, Ron and Cornelia, began noticing he was losing the speech and other skills he’d acquired; he would go on to be diagnosed with regressive autism. Along with trying the traditional treatments, including occupational, physical, speech, behavioral and social skills therapies, Ron and Cornelia happened upon a novel way of reaching Owen—through Disney movies.

By the time Owen was nearly 4, he had watched and rewatched Disney animated classics old and new countless times, from Dumbo to The Little Mermaid. Intense interests like this are common among autistics, and the Suskinds were happy to encourage his fascination since Disney movies seemed to make their son light up. But over time his parents would come to realize that the movies were doing much more than that. Owen was beginning to recover words by soaking up movie dialogue and, eventually, was even learning to read via rolling the credits again and again.

Ron and Cornelia, along with Owen’s big brother, Walt, began joining him in his world, They became the characters and acted out scenes, right down to the voices—which Owen had an uncanny talent for mimicking. They had found a way to reach their son, and for him to reach them. It was the start of something big.

Suskind, a Pulitzer Prize-winning journalist, spoke with the Child Mind Institute about his book, Life, Animated, and the 20-year journey traveled by Owen and his family.

You write in the book that Owen was nearly 4 and basically nonverbal until you figured out that his repetition of the word “juicervose” was him repeating “Just your voice,” a lyric from one of the songs in The Little Mermaid. So you decided to embrace his fascination with Disney movies, leading to what you call “the basement sessions.”

What we felt is that we really wanted to live within the affinity and try to understand it—not as a pathology, not looking at it through that lens that it’s a perseverative wheel in the ditch and a nonproductive behavior. We wanted to know what it is that draws him in here, why he’s finding comfort and satisfaction in here, and figure out what, as best we can, he sees. And that was a process that took some years.

How did you figure out that his fixation on Disney movies was more than it seemed?

It’s clear that he is hypersystemizing; he is doing all manner of pattern recognition, tying the movies to other movies. He’s connecting characters across many movies, in terms of their type of affect, their personality, their traits, their inclinations, their desires. At that point, we said, “My goodness, there’s a whole world down there.”

When did you first try to really communicate through a Disney character?

On Walt’s 9^th birthday. Owen was 6. That night, I slip into his room as Iago [the parrot from Aladdin] for the first time, in character, and we had the Iago conversation where he tells Iago “I’m not happy. I don’t have friends. I can’t understand what people say.” It was most certainly a crossroads.

You call what you did with Owen “affinity therapy.” I’ve never heard of that.

I hadn’t either. [laughs] I think we invented it. It’s the idea that you grab a hook to pull them out into your world. I don’t think there’s a great deal of attentiveness to the nature of the affinity, as in I am a Disney kid vs. a maps kid, or maybe a little of both.

I prefer the term affinity therapy to people calling it Disney therapy because you do this with affinities of all kinds. I think if you looked at the large population of folks on the spectrum, and certainly if broken down by some age groups, you would probably find 12 or so affinities that predominate. I think Disney is first, but you’ve got a lot of Thomas the Tank Engine kids, you’ve got a lot of anime kids, you’ve got the trains and the maps. I think there are opportunities in those, too.

You talk about the importance of understanding the affinity.

Affinity can often reveal unrecognized capability, and that capability offers you a map to more possibility in the lives of these people and these kids, certainly.

Had you tried using traditional behavioral therapies?

We had a behavioral model where if Owen didn’t score a certain number of points at school for appropriate behavior, he could not watch a video that night. We had some improvement in behavior and then it started to slag. It was like we’d cut him off from his supply line.

When did Owen’s identification with the Disney sidekicks start?

After he was asked to leave the Lab School at 11. When he had to leave, he had been whacked. He saw the world’s judgment. He saw something larger—that he was left behind, that the other kids were racing forward. At that point he became an aficionado of the sidekicks. As he would tell us, they help the hero fulfill his destiny, but it is not for them to have a destiny. But he came up with his incredibly profound sidekicks philosophy, “No Sidekick Gets Left Behind.”

Sidekicks are interesting, right?

There are hundreds of them. There’s a pantheon. Some are goofy, some are resourceful, some are wise. He attached sidekick identities to kids at the school where he went to, where the kids are more burdened. And it grew into a structure for him to engage, guide and shape his identity.

What happened next?

Eventually at 14 it grows, because he’s grown. And when his brother challenges him, “Any movie ideas in there?” he says, “Well, I do have one.” It’s 12 sidekicks searching for a hero, and through their journey and the obstacles they face, each finds a hero within themself. That becomes his model for growth. Not to be drawn as a hero; that somehow seems wrong to him. He is here to help others fulfill their destiny. But at the same time, to search for the qualities of heroes within himself. I can think of a lot of adults I know who might profit from such a philosophy. [And he did this with] a measurable IQ of 75.

You bring up the idea of IQs testing. What’s your take on scoring autistic kids?

I think it’s wrong to put that number on the arm of a kid with such an uneven presentation of skills and deficits. People put so much weight on that score and it defines so much going forward. Part of the difficulty is that the yardsticks we use in the neurotypical world are often built by and to affirm the victorious march of those who do well on such tasks.

After Owen was asked to leave the Lab School, Cornelia homeschooled him for two years. How did she use Disney in her lesson plans?

Cornelia’s a journalist, like I am. But 20 years ago when Owen was diagnosed, she said, “I now have a new job.” During the homeschooling, she worked one-on-one to teach him the basics of education and used his favorite scripts from Disney to teach.

There are many ways in. For example, he’s into pirates, so she said, “Today we’re going to do pirates.” He does an inspirational riff in the voices from Treasure Planet—it’s an animated movie, Treasure Island in space. Owen loves saying it, it’s almost like he snaps into a kind of integration, like Temple Grandin and her squeeze machine. He does the voice, then he’s quite attentive.

And then as Cornelia goes through William Bonney and Blackbeard, he sees connections. The next thing you know, she’s with Thomas Jefferson and the Barbary pirates, and then she’s with Thomas Jefferson at Monticello. So we get from Treasure Planet to Monticello in three jumps.

The boys are in their twenties now. What are they up to?

Walt’s a public affairs officer at the Consumer Financial Protection Bureau in Washington, D.C. Owen’s graduating in June after three years at Riverview School, on Cape Cod, for folks of various challenges. Many are ASD, some Downs. It’s affiliated with Cape Cod Community College; the kids take classes at the college. He’s lived in a dorm, just like any college experience, for the last three years.

Owen has developed a Disney Club at Riverview for kids who share his affinity. How has that helped him and the others?

Many of the parents say they now see changes in their children. I can see it, too. There’s much more interaction, a sense of strength in numbers, a sense of “Hey, wait, we’re all right, we’re not crazy, this stuff has a lot in it.”

At one point, we talk about Gaston, and one of the girls says he’s different from all the other villains. I’m missing it, I don’t see how. Owen says he’s handsome and popular, the only villain like that. Then they debate it. One of the girls says most of the villains she’s known have been like him, handsome and popular—just think of some of the boys she ran into in high school.

It’s like a dam break. Many were told watching Disney is not age-appropriate—if you’re 18, if you’re 20, you’re supposed to be watching sex and violence. They’re like “I don’t want to watch that.” I see moral precept in this.

Owen’s an adult now. What’s next for him?

Starting next year, he’ll be moving to a community also for those with a lot of independent capabilities, they go from 20 to 40. All of them have jobs, some of them drive. It’s called Living Independently Forever [LIFE] and was created by families to provide support. He will be in a house there in a cluster of a dozen houses, which has a community center and whatnot. He and three other kids who are all classmates from Riverview will be in the house. They’ll each have separate one-bedroom apartments. One of them is his former roommate; another is his girlfriend of two years. Emily. They have a very attentive, intimate, loving relationship. She’s a Disney Club member.

Does he have particular strengths on which to build?

One of the things the school has been really, really good about developing is Owen’s artistic skill. He paints very powerfully Warhol-like versions of these iconic characters, from Captain Hook and Peter Pan on. Some of the art has appeared in galleries on the Cape, and so the expectation is he will move more forcefully into selling his paintings. He’s got a great art teacher at Riverview, Nate Olin, who basically saw his talent from the first day and said, “The kid is an artist.”

You dedicated the book to Walt. Why?

He’s a real-life hero because, you know, the sibling issues are often under-recognized and unappreciated. He will be with Owen the rest of his life. He’s the only neurotypical person Owen really has known intimately his own age. The way Owen modeled himself and thought about his path was based on what Walt had done. And at the end of the day, it’s Walter who says that Owen was his best teacher.

For a piece adapted from the book, see “Reaching My Autistic Son Through Disney” in the New York Times.