Autism Awareness Month: Q&A with Ron Suskind

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18296031When Ron Suskind’s son, Owen, was three, he vanished into regressive autism. He wasn’t sleeping, eating, or talking; the only thing that could hold his attention were the Disney movies he’d always loved. Terrified and confused, Ron and his wife, Cornelia, were unsure where to turn—and eventually found that those very same Disney movies were the key to communicating with their son. Disney may seem like an obvious way to reach a child, as their classic animated movies are loved by children around the world. But for Owen and his parents, they were a lifeline.

Suskind, a Pulitzer Prize–winning journalist, was inspired to write Owen’s story—an account that became the book Life, Animated. For April’s Autism Awareness Month, Suskind answered a few questions for YPG about the book, his family’s experience with Owen’s autism, and the “stories we literally need to survive.”

YPG: What inspired you to tell your son’s story?

RS: When our son Owen vanished into regressive autism at three, he changed. But we all changed. We were reshaped, over years, in how we saw ourselves and our place in the world. As our older son, Walter, often says, “Owen is my best teacher.” Those lessons—many of them life lessons—inspired us and we hoped that they would inspire others.

Why do you think it’s important to represent experiences like Owen’s in books?

Once Owen hit 19 or so and became more aware of his capacities and the way people looked at him, he pressed us to write this book to show others that “I’m a diamond in the rough, that I’m more than what I appear.” (Yes, that’s drawn from Aladdin!). So many people like Owen are invisible—they have no voice and are almost blithely discarded by society. Books like this allow them to speak—and speak powerfully for themselves. It’s hard to look past a person who’s looking you in the eye and addressing you powerfully and directly.

Disney is highly prevalent in Life, Animated. For a lot of people, Disney are a source of hope because they remind us of our childhood, a simpler time. Was that effect amplified for you? Or did it become more of a storytelling tool?

Oh my—I could write a book on the complex relationships folks have with these Disney movies (there are already several on the shelves). They surely do draw us back to moments in our lives of simplicity and innocence. But these movies are anything but simple: Walt Disney, like the brothers Grimm, drew from the folktales that humans have been telling for thousands of years to make their way through life. We didn’t really appreciate all this until we realized Owen was using dozens of Disney classics as his map—his code-breakers, to understand human interaction. Then slipped down the rabbit hole, you might say, to find him, to rescue him. But what we found in his underground cavern were the ancient stories of the world.

On your website you mention “stories we literally need to survive.” Can you talk about the importance of storytelling in relation to the human experience? Why do you feel stories and the humanities are important?

I’ve been a story guy my whole life, both personally and professionally—spinning them for the dinner party guests as a kid, writing them as a journalist and author, telling them on stages. During those decades, the culture has more and more joined my story fixation. Folks are crowding onto stages for The Moth and TED. Neuroscientists now study the speed with which our brains shape noisy reality into narratives that define our views, our actions. These days, I teach a class a Harvard Law School about how those swiftly shaped narratives affect matters of justice. Story has made it to the “adult table,” you might say. I consider that progress and a boost, not incidentally, for the beleaguered humanities, which have long been battered by the transactional, well-marketed literalisms of competing disciplines and their prompt, “what sort of earnings will this degree get me?” We’re now realizing that’s a smallish query. The question is “how do I become a fully-realized and aware person?” The answer has long been found in the humanities. The word’s root says it all: they teach us to become more human. And, as humans, we discover ourselves through story.

There’s an idea of parents in similar situations trying to “rescue” a child. Is there a way in which your son may have rescued you?

At the start, when Owen stopped talking, we spoke of rescuing him, as though he’d been kidnapped. Of course, we’d come to realize that he hadn’t been. He didn’t vanish—he’d become a boy, now a man, with autism. And as he taught us, and now the wider world, what that means, he rescued us from a life in which we’d been missing so much of what illuminates the gift of each day.

How did you feel when Owen lost his speech, in that moment when you realized something was wrong?

Terrified and confused. And not sure—back in 1993—where to turn. Two decades later, we now know so much more.

Was it a long process to accept that Owen that has autism? Were you in denial at first? How did you come to terms with it in the short term?

Yes, deep denial. An old and wise psychiatrist—the father of a best friend—once said to me, “respect denial, it’s an important mechanism in the human architecture that helps us live with what we cannot face.” We didn’t respect it. Didn’t even recognize it at the start. That’s why we so swiftly embraced Owen’s early diagnosis of PDD-NOS, which stands for “Pervasive Developmental Disorder—Not Otherwise Specified.” Right, like something out of Orwell. What we knew… it wasn’t the A-word, which meant “Rain Man” and, maybe, him never regaining speech.

Confidence is, of course, the major theme in your book Confidence Men. What role do you think confidence plays in working with an autistic child?

When parents are knocked backward by a diagnosis and face a hard-to-reach kid, they feel like they can’t parent in a traditional way. That well-known playbook gets discarded. It’s easy to lose confidence, to defer to therapists and professionals, and worry that you’re “doing something wrong.” Confidence can either be willed or earned, and parents earn it (or earn it back) by trying lots of things, remembering that trial and error defines every parent-child relationship, that a challenged kid isn’t made of china—they won’t break—and that parents are always the leading experts on their child.

Life, Animated is not only your story, but your family’s. What were the biggest hurdles for your family in raising a child with autism? What moments were the greatest successes?

The biggest hurdle was not trying to always “fix” Owen—something we did out of love, of course, to help him manage his life—and, instead, just enjoy his wonderful uniqueness. Love what he loves, Cornelia would say, and you’re loving him. And together, with him often in the lead, we found pathways to all that defines love and family… for everyone.

Ron Suskind is the author of the New York Times bestsellers The Way of the World, The One Percent Doctrine, The Price of Loyalty, and A Hope in the Unseen. From 1993 to 2000 he was the senior national affairs writer for the Wall Street Journal, where he won a Pulitzer Prize. His newest book, Life, Animated, chronicles his son Owen’s struggle with autism and the way in which the family used Owen’s affinity for Disney to connect with him. He lives in Cambridge, MA, where he is Senior Fellow at Harvard’s Safra Center for Ethics.

This article was contributed by YPG member Sophia Latorre-Zengierski. For more information, visit our Contributing Writers page.

 

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