In his latest book, Pulitzer Prize-winning journalist Ron Suskind describes the horror of watching his young son Owen "disappear."
Just shy of his third birthday, an engaged, chatty child full of typical speech — who said things like, "I love you," "where are my Ninja Turtles" and "let's get ice cream" -- fell silent.
"There was a new story every day, a new horror. Owen wove about like someone walking with his eyes shut," Suskind writes. His parents wondered if their son "had been injured somehow — banged his head, or swallowed something poisonous. It was like searching for clues to a kidnapping."
The clues lead to a diagnosis of regressive autism, which now affects roughly a third of children with the disorder. But Suskind's book tells the story of Owen's extraordinary 20-year journey back. He'd stopped talking but had retained an affinity, a passion, for Disney movies. And over the years these provided him with stories, characters and, eventually, a language that allowed him to re-engage with his family and the world.
Ron Suskind, senior fellow at Harvard's Edmond Safra Center for Ethics, author of "Life Animated: A Story of Sidekicks, Heroes and Autism" and former senior national affairs writer for The Wall Street Journal, where he won the Pulitzer Prize. He tweets at @RonSuskind.
On the first time doctors said Owen was autistic:
Ron Suskind: "You can almost do a before and after. I can see those two people, Cornelia and me, sitting on the chair when we hear it for the first time. And then we seem to escape from our bodies and look down on those two people frozen in place. And the doctors explained to us, 'Look, some kids never get their speech back. You have to be aware of that. This is a life journey you're now embarking on. You've got to think about supporting him for the next 50 years and for 30 years after you're dead.' This is an adult moment."
On Owen's first real sentence:
RS: "We don't know if he's understanding or what he's understanding. Meanwhile, Cornelia's working round-the-clock, every day, every night. Owen's not sleeping, so she's up every night with him. Every therapist we can find, a little bit of speech is coming back — two, three word sentences. And then, when he's about six and a half, his brother gets a little emotional on his birthday. He's 9 years old, his older brother Walt. And Owen walks into the kitchen on the day of Walt's birthday and says, 'Walter doesn't want to grow up like Mowgli or Peter Pan.' Now, this is his first real sentence at six and a half."
On what lessons can be drawn from Owen's story:
RS: "It's looking at a blind spot that a lot of us so-called neurotypical people — that's just the term of art for normal — I'm not sure what that term means, frankly, anymore. I think we're all on various spectrums. I think we're recognizing that now but what we did was say, 'Be more like us. Jump around between subjects, listen to what the teacher's saying and say it back.' That doesn't seem to be the way. But because we felt that way, these affinities were seen as perseverative and obsessive — cut them off, wean the kids off of them. Now the view, since the book came out, is they're more pathway than prison. If you go deep into them, live inside of them with the kid, you'll find that, down there in that underground cavern — each of these kids seems to have one of these — there's navigation equipment, there's language that means this and that, there are ways that the kids are processing it to understand themselves. And, eventually, as what happened with Owen — and we have it happening with other families that call us — we created a vehicle that he now drives out into the world. That is something that he's in charge of, because his affinity is deeply rooted in him. The idea is that the DNA of all things is found in everything. And that's part of the lesson. Let them be more like themselves rather than more like us."
On how Owen is doing now:
RS: "Owen is at a school out on Cape Cod. It's a school for folks, some are on the autism spectrum, other kids with different kinds of challenges. He'll be graduating in two weeks, after three years there. It's been a great time there, for him. As soon as he got there he started Disney Club, of course, to meet people like him, he says, and to find answers, whatever that means. And first year there's 12 kids, this year there's 35 kids in it and they all speak Disney. They do that and meditate on it like philosophers, little social connections are forming in Disney Club, several boyfriend-girlfriend mixes, including Owen, who's had a steady girlfriend for the last two years. Walt is his main adviser on romance."
On Walt's romantic advice to Owen:
Walt Suskind: "For one of the first time in our 22 years together, at that point, were sitting down and having a conversation that older brothers have all over the world with their younger brothers. It was something, in high school, that I became more aware of as I saw all these brothers at my school really going from guys who lived in the same house to best friends and sharing these things and being together. It was something I always had to wrestle with, that this would never really exist in exactly the same way for Owen and myself. But, being able to sit there at Friendly's with him and kind of just talk through something that every older brother wants to pass down to their younger brother is kind of a moment that, obviously, I'll always hold onto and treasure. All of a sudden we were just two guys in that booth sitting there talking, and we didn't have to use one Disney anecdote, either."
- "When acclaimed journalist Ron Suskind’s son Owen was two and a half, he suddenly stopped communicating: his vocabulary dropped to a single word, “juice,” he would cry inconsolably and had trouble both eating and sleeping."
- "After visits to several doctors, we first heard the word “autism.” Later, it would be fine-tuned to “regressive autism,” now affecting roughly a third of children with the disorder. Unlike the kids born with it, this group seems typical until somewhere between 18 and 36 months — then they vanish. Some never get their speech back. Families stop watching those early videos, their child waving to the camera. Too painful. That child’s gone."
- "Sitting in the classroom, he systematically reviews which of these dreams might be realized for Owen: “Best way to figure that is to extract them, one by one, and smash them in the corner.”
This segment aired on May 28, 2014.