When the veil of autism descends on a child, devastated parents confront a series of difficult questions and decisions, says Pulitzer Prize-winning journalist Ron Suskind whose new book, Life Animated: A Story of Sidekicks, Heroes and Austim, recounts his family's 20-year odyssey across the elusive realm of autism.
Many children on the autism spectrum have or develop an "affinity" or a passion: trains or comic books or, in the case of young Owen Suskind: Disney animated movies. Professionals have long encouraged parents to force their children to steer away from those affinities and stay focused on the "real" world.
Ron and Cornelia Suskind's experience with their son, Owen, has researchers reconsidering that position. Rather than being a prison that locked Owen away, his favorite films and their characters became a pathway for communication and understanding between Owen and his family. This week on Bloomberg EDU, the Suskinds discuss why Ron wrote the book, how they connected with their son, Owen, and his older brother, Walt, "a real life hero."
The audio and transcript are below.
This is not a legal transcript. Bloomberg LP cannot guarantee its accuracy.
JANE WILLIAMS:
I'm so glad to have you with us for our weekly look at education here on Bloomberg Radio. Really happy to welcome to the program Ron Suskind and Cornelia Suskind. They're married and the proud parents of two young men, Walt and Owen. Ron is a Pulitzer Prize winning writer who worked at The Wall Street Journal and has authored a number of great books. My personal favorite, and I'm not alone, is Hope in the Unseen: An American Odyssey from the Inner City to the Ivy League. He's currently a fellow at Harvard Center for Ethics.
His new book is called, Life, Animated: A Story of Sidekicks, Heroes, and Autism and it tells the beautiful story of their family's experience with autism. Cornelia Kennedy Suskind is a former journalist as well and is, as Ron tells me, the Suskind answer-woman, which is high praise and an important job. Ron, why'd you write this book?
RON SUSKIND:
This is really a moment where this story that grew up as the real defining story of our life arrived at a kind of point of precipitation a few years ago. Owen is just 23. When he was about 19, Cornelia and I sort of looked at each other. Owen, at that point, was growing into fullness. He had a great deal of capacity and a kind of independence that he had acquired. And we said, "Owen wants us to tell people who he is and who people like him are, what they're like, folks on the Autism spectrum." And frankly, at that point, Cornelia and I said the key thing to each other, "Could a book like this have helped us 15 years ago when we were just starting out and so confused and scared?" And we both said immediately, "Of course." And at that moment, off we went.
JANE WILLIAMS:
And because the beginning of your story is not unique, Cornelia, tell us about your son Owen, and what changed for him when he was about three years old.
CORNELIA SUSKIND:
Owen was like other regressive, autistic children. Born typical, seemingly, and when he was two and a half we moved from Boston to Washington D.C., at which time, over the course of about a month, he lost motor skills, language skills that he had been displaying, eye contact, the ability or desire to sleep or eat. We moved to Washington and he basically just completely shut down and went into his own world.
Initially I, as a mom, thought that it was moving/transition issues, and that went on for about a month until Ron and I both looked at each other and said, "This cannot be the result of going from a crib to a big bed, or moving from Boston to Washington." So, it was a very dramatic episode and it was compounded by the fact that we were in a new city where we had no doctors, no friends, no one at all to turn to for help, or to help us figure out what was going on.
JANE WILLIAMS:
So you've just moved to Washington, you have another son, Walt, who's older, and you're trying to sort through all of this. How did you figure out what was going on?
CORNELIA SUSKIND:
Oh boy, it was a long and painful process, but I'll say the short story is that we were able to finally find a developmental pediatrician who could help be our quarterback, as he said to us initially. So, first he was diagnosed, and that was the incredibly traumatic event, because we had absolutely no anticipation that anything like this could be going on. We knew something was going on, but there was no autism in our family, we had no experience with it at all.
And this pediatrician then immediately, it was 1993 at this point, so very early in the sort of, tsunami of autism that has enveloped everyone, so there were very few places to turn, but he immediately got us going with speech therapy, occupational therapy, play therapy, you know, on the road as fast as possible for early intervention.
RON SUSKIND:
It was difficult, Jane, because he basically stopped talking, he fell silent, and he was chatting away to, "I love you. Let's get ice cream. Where are my Ninja Turtles?" Even some jokes and kids do that at two and a half, and then he basically vanished. He was down to just one word, "juice" and he didn't seem to want juice often. He had gone from a big boy cup to a sippy cup. Of course, he had graduated to the big boy cup about a year before.
And at that point we first heard the word "autism" and we were, of course, just in a state of confusion and shock at that point. "That can't be." But over the next year, we just felt our way along. And frankly, as we've felt our way along for decades, certainly the decade to follow, trying to figure out how to reach him, how to help him.
JANE WILLIAMS:
You had to reach out. You said you found your quarterback. A lot of families find themselves in that situation where they get a diagnosis, they don't know what to do next. How did you know what to do?
CORNELIA SUSKIND:
Well, it sounds trite, but the truth is that both being journalists and reporters, we sort of did dive in in that way, and that's kind of our personality anyway, so we just went at it full bore and tried to find any answer that we could. And really to find the very best person that we could and best people that we could to help us navigate this unknown territory. And that's really these therapists and doctor that we had were the people who were educating us as we went.
JANE WILLIAMS:
Ron, tell us about the Disney movies and the breakthrough they provided you all.
RON SUSKIND:
Our kids were born at a time where Disney kind of made a comeback after a couple of decades in the trough, if you had kids in that age, it would be--
JANE WILLIAMS:
Yes, exactly the same ages, so I know precisely what you mean. Great movies.
RON SUSKIND:
Right, Alice (sic) I'm sure your kids are watching what our kids watched - the biggest four movies of various years, Little Mermaid, Beauty and the Beast, Aladdin, and The Lion King.
JANE WILLIAMS:
Fantastic.
RON SUSKIND:
These huge hits, and of course they were out on videos, which was actually a fairly new twist. Not until the mid-'80s were VCRs really integrated into domestic use, as they say. Everyone had one, so everyone had the tapes and everyone watched the movies. Now, the kids, our kids, watched the movies before the onset of autism when Walt, our older son, and Owen used to watch them up in Boston. But once we got to Washington and Owen was just miserable, spinning, confused, silent, and the only thing that seemed to give him comfort was watching his favorites, watching these movies up in our bedroom. And, of course, we went up and sat with him. It was kind of the only time where he seemed to be at ease.
And about a year in, with this being a main family activity, we were watching The Little Mermaid on a particular day. Owen was saying basically nothing at this point, but he was murmuring gibberish, like baby talk. We couldn't make it out it was nonsense-speak. But at one point, leading up to this, he was saying "Juservoss (PH), juservoss, juservoss." And we thought he wanted more juice, but he didn't seem to want the juice. And then we sat as he rewound the part of The Little Mermaid where Ariel, the protagonist, the mermaid, loses her voice, trades it to be human to the sea witch and the sea witch yells, "Just your voice." That's the part of the movie he keeps rewinding. And at which point all of us are up there, Cor and me, Walt, Owen, on the bed, and we said, "Oh my God." Cornelia says, "It's not 'juice', it's 'just'. Just your voice."
JANE WILLIAMS:
Which is such a profound thing.
RON SUSKIND:
And we start to yell, "Owen! Just your voice!" He says, "Juservoss, juservoss, juservoss." And it was a moment of contact. He looked right at us, which was a big event at that point, and we all jumped on the bed, and Walt was yelling, "Owen's talking again!" Now, our specialist sort of said, "Just take a deep breath. This is called echolalia, which a lot of kids with auditory processing and speech deficits do, they echo. Meaning they hear a sound and they repeat it, like little babies do, and he doesn't really understand, probably, what the words mean." This back and forth, "Is it echolalia? Does he understand what he's saying?" Went on for several years, as little by little he built back some speech with round-the-clock therapies that Cornelia was running him to, until he's about six and a half.
Again, he has very modest speech, mostly "I want this. Gimme that." But here's the breakthrough moment, the second of them, where we saw it clearly. His older brother, Walt, like a lot of siblings of folks with challenges, is a very independent kid, kind of a junior adult at this point. But he gets emotional kind of, on one day of the year, his birthday. This is something Cornelia and I barely notice, because it's something we don't want to see, really. We want Walt to be able to conquer the world and make sure he always brings Owen with him.
JANE WILLIAMS:
Of course.
RON SUSKIND:
Well, Owen, after Walt gets emotional on his birthday, walks in from the backyard behind us and turns to us and says, "Walter doesn't wanna grow up, like Mowgli or Peter Pan." Now, this is the first complex sentence he's uttered, really in his whole life, certainly the first complete offering since two, two and a half, like this, and we were just stunned.
It opened a window that allowed us to see his internal life, that he seemed to have been, we find out soon, memorizing these movies. Not so much as language, as song, like he memorizes tracks of music, almost like, as one of our folks said, memorizing something in a foreign language, like a Kurosawa movie in Japanese, and then trying to figure out what all those sounds meant. He had opened a window. And we, at that point, went a little crazy, where we said, "We're gonna have to become like animated characters." Because if you threw him a line, he'd throw you back the next one.
JANE WILLIAMS:
For him to say, though, that, "Walt doesn't wanna grow up, like Mowgli or Peter Pan," meant not only that he was following those movies and understood them perfectly and was mirroring the language and had memorized it, but that he was analyzing them and the behavior of those characters and the behavior of his brother, and making the connection between those two characters and his brother. So very complex thinking.
RON SUSKIND:
Yeah.
CORNELIA SUSKIND:
Right, right. And I think that one very widely-held misperception of autistic children and people, is that because they don't respond, because often they don't respond to some greater or lesser degrees, don't have good eye contact often, is that they're not understanding or listening. This is something that any parent of an autistic child could tell you about. The number of teachers that they've tried to explain, "He really does hear every word you're saying and understands it and is taking it in at a very deep level, even though it doesn't seem that way." And I think that was another thing that we realized at that moment, that's very important.
JANE WILLIAMS:
And not only the thinking, but also the emotional connection with his brother where he's understanding that his birthdays are hard for him and coming up with his own explanation for why that might be.
RON SUSKIND:
Yeah, and it's also pattern recognition. Again, something that the folks on the spectrum are known to have strong capacities in. And there are many kids with no speech, who I'm sure could've drawn the same connection. Owen, though, seeing the pattern that Walt is emotional on, probably, one birthday after another, offers this interpretive expression.
At that point, we basically start playing scenes from Disney movies, and at that point we realized that Owen had memorized dozens of them since Snow White in 1937. And we just became scholars of Disney. We were no great fans of Disney to start with. We watched Jungle Book and Sword in the Stone as kids, that sort of thing, and we went to Disney World once before the kids were born. But at that point, we had to become scholars of this chosen affinity. Owen seemed to have chosen his affinity, as many kids do. He does it for a reason, we really couldn't question that. All we knew is we had to become, essentially, part of his world, and speak this language he had invented, using Disney scripts and dialogue.
JANE WILLIAMS:
So we were talking about the role of Disney movies and you were saying, Ron, that you had to enter his world. You had to learn to speak his language and in a way that helped you then bring him back into yours and into ours. Bring us up to date in the years since then.
RON SUSKIND:
Well, what we found, Jane, is that year by year he was digging deeper and deeper into this chosen affinity. Often, kids are called, on the autism spectrum, "context blind," meaning they don't see context as you or I might, but we found that in this area, he was context deep. A hundred miles deep it seemed. And so, I think what we found, even though many of our specialists, who were people we admire and trusted, were saying at that point what most folks were saying, "This is his affinity, his passion, his obsession. Try to wean him off it."
Many kids, most kids in the spectrum, have some chosen affinity. It could be Thomas the Tank, it could be animé, it could be maps. Many of them are Disney kids, though. We found this all over the place. And I think part of it is that they can rewind the tapes, which allows them, at their own pace, to draw deeper and deeper inferences from them, new details they see each time. And the way their brains work, the joy Owen feels the first time watching Beauty and the Beast is no less than the 101st.
And all together that showed us, maybe, a new way to go. We, at various times, and Cornelia can talk about this, cut it off, 'cause folks said, "It's perseverative, he needs to get more broadly interested in more things to function at school." And that's a battle that we fought day to day.
JANE WILLIAMS:
I wanna ask you about that, Cornelia, because, as Ron just said, often parents are advised that they need to take their child away from their affinity, away from their passion, we have friends who are in that very situation. Would you have advice for them on that?
CORNELIA SUSKIND:
Well, I would say that there certainly is a lot of truth in the fact that any child has to live in the world, so the idea that they can only dwell in the world of their affinity is just not helpful to the child or the family for their future. But I think the difference is, is that what we learned to do, by hook and by crook, there was not a grand plan, we really were feeling our way every day, like any parent does, was to respect the affinity. Ultimately we learned that. Rather than try and tamp it down and get rid of it, we had to use it as our only hook to reach Owen. And then, maybe partially because it was a joyous affinity, Disney, though we were not huge Disney fans, is a pretty happy place to be if you have to be somewhere.
RON SUSKIND:
"Happiest place on Earth." Isn't that their point?
CORNELIA SUSKIND:
And I think just respecting your child's affinity is the first, most important, step. Instead of saying, "Turn it off, turn it off, turn it off." Because, of course, anything perseverative, anything that's over and over and over again would drive any one crazy, any parent crazy. So you have to sort of temper it with the things they need to learn, but we used it, and ultimately respected it, to help him learn the things that he needed to learn.
JANE WILLIAMS:
And using it, as you describe it, you really went into that world, learned to speak that language and communicated with Owen where he was comfortable by using the characters, both as metaphors or symbols of other kinds of things that happen in life, but also as actually having conversations as those characters, right?
RON SUSKIND:
Oh absolutely. And the thing is, it wasn't just mimickry. He was emoting as Mowgli, as Peter Pan, as Simba, with the real emotions. You could feel it, it would melt the wallpaper. And so when we saw that, we realized that he had invested a great deal of his identity in the use of these characters to help him find his way.
And interestingly, Cornelia home-schooled Owen for two years, and along with the ABC's, reading, writing, and arithmetic, what she did was she used some of the Disney movies to try to build lesson plans based on the things of his great motivation and interest. And a big part of the challenge is motivating these kids because the thing they want is the thing they want. Cornelia was able to spread it.
So, if she starts with pirates, there's a pirate movie he loves from Disney called Treasure Planet, next thing you know it's the Barbary Pirates fighting Thomas Jefferson, and then Thomas Jefferson's at Monticello, and he's got all of that now to Thomas Jefferson, because she starts with the affinity and the pirates. And that's the way much of general knowledge was step-by-step taught to him.
JANE WILLIAMS:
I should point out that the book is published by Disney and we are talking a lot about Disney movies, but you're very careful to point out that that connection is only the fact that Disney decided to publish the book, right?
RON SUSKIND:
I'll tell you a funny story that I think people at Bloomberg might be interested in. The reason I had to go to Disney, as opposed to any of my normal publishers, like Harper Collins or Simon and Schuster, is that my agent, Andrew Wiley, a well-known agent, said, "If you're considering doing this book, you have a legal issue." And I said, "Well, what could that be?" He says, "Virtually everything your son says is licensed by a multi-national corporation." I said, "Oh, you've got to be kidding." He's like, "No, no, you'll be paying licensing fees every page of the book. Every lyric, every line of dialogue, is owned by Disney."
At which point we had just one bidder. Disney was delighted about that, of course, and I said, "Well, look, you're happy I'm here. Here's the quid pro quo, I have to be protected from these licensing issues." And they said, "Fine." At the same time, though, I was very clear to say, "Look, I'm doing it for you, but you can have no influence whatsoever of what's in this book, and at the same time you'll have arms-length distance to say that you're not recommending kids watch your movies to help with autism. This is our family's story, it happens to be published by you." It's fascinating though, the reactions are astonishing from every direction, all positive, I have to say, and Cornelia and I have been living in the curl of a wave since that New York Times story came out two weeks ago on the book.
JANE WILLIAMS:
I bet. I read some of the reactions and they are beautiful. It was so powerful. It was as if you just brought a whole community of people together in one moment. Anything that sticks out in your mind as particularly moving?
CORNELIA SUSKIND:
Oh my gosh, there were just so many beautiful, beautiful emails that Ron and I would read ten, each, at a time, and we'd have to stop for a little while because it was so emotional. There was a particularly beautiful email that I received through the website, or that we received, from a young lady at Northwestern University, and she said that she had some emotional struggles that she was dealing with every day, and this was a girl in college, that reading the article gave her hope that if someone like Owen could persevere she could, too. And she would put up on her wall a little paper that said, "Remember Owen Suskind." And that's just one of hundreds.
RON SUSKIND:
Oh yeah.
CORNELIA SUSKIND:
It's just so moving that people can be touched by Owen's story and our family's story.
RON SUSKIND:
And another thing, Jane, which is interesting, is that autism from around the world have also contacted us. Some of them we chatted with during the reporting of the book who are very, very interested now in, as one said, reversing the telescope and looking at these affinities, not as a thing to be reduced, focusing only on how to reduce behaviors, so-called, but maybe a key to understanding how the mind, the neurochemistry and neurobiology of folks with autism, how that really works.
This is a very, very exciting kind of a move by the research community, because I think that this has been floating around for a long time. What's going on with these affinities? Is it a prison or is it a pathway? And I think that the book and certainly the stories in the Times and the book now, are helping people see that, at least for us, it was a pathway, and that might help researchers.
JANE WILLIAMS:
Another of the themes in the comments was, and you wouldn't bring this up but I want to, is that you two are extraordinary parents, and Walt's an amazing brother, and Owen is an incredible kid. And the love that you poured into this family dynamic, and the perseverance, the determination you had to make this work, really stand out as extraordinary and as exemplary. How hard was it?
RON SUSKIND:
Oh gosh.
CORNELIA SUSKIND:
It was hard. We have to be honest about it. It is amazing, and we are so fortunate, but believe me, there were many, many days and years, stretches of time, when we had no idea how things were gonna go. And we still don't. Owen's 23, he's doing so well, he's about to graduate from a wonderful program, college-type program, he's going to be living on his own. In a sort of community, but independently. But it's a long road ahead, and we would never want people to think there was some easy solution. It was difficult day to day. There were many moments of despair, but there were also, because we have been so lucky, the four of us, to have each other, there have been so many moments of real joy.
RON SUSKIND:
Well, you know, Walter. The dedication to the book is to Walter, a real-life hero. Walt is the neurotypical brother, sibling, and it's a huge issue. There are millions of them out there, certainly. He had choices. He lived in the wider world, he's a very popular kid. He was on the Sidwell Friends football team, kind of a class president guy, and very popular, but he always was there for Owen, no matter what.
And in some ways, Walt is maybe the key actor in so much that's worked for Owen, and helped Owen understand what it's like to be independent, to be self-directed. And the good part, when we talk about this latest stage, at college, Riverview on Cape Cod, is that largely Owen is self-directed now, and he's found a community. He started Disney Club at his college and all of the sudden, the first year, there were 12 kids just like him.
The thing that was different is that many of them were never given permission to embrace their affinity. They were told to cut it off, or don't talk about it, or it's not age-appropriate, and as soon as Cornelia and I went to that first Disney Club and opened up the discussion, it was like a dam break. Every one of them holding forth with deep, deep emotional insights that they gleaned and essentially pulled together in the same way Owen had. And many of them, you can feel them now, racing up behind him quickly, to say, "This is the way I make sense of the world." And there's plenty there to work with.
JANE WILLIAMS:
You wrote a great book, I referred to this earlier, A Hope in the Unseen, following a young African-American man in Washington D.C., named Cedric, who ends up going to an Ivy League school. You see parallels between his experience and Owen's. Tell us about that.
RON SUSKIND:
Well, one of the passages in the book early on is about how Cornelia and I changed in the year after Owen's diagnosis. And in fact, just a few months after we first heard the word "autism" I went to southeast Washington and began the reporting that eventually was a series in The Wall Street Journal and then grew into the book. And there's no doubt, as I look back on it, not long after, a few years hence, that I was able to see things that I might not have seen because of Owen. He almost prepared me for it.
I was there with a whole school full of kids who had been left behind, many of them untraditional learners, and utterly decontextualized from the wider society where we so happily lived. At the same time, I knew the way people looked at them, Cedric and his peers, on my side of town. Looked at them long enough to look away.
And when, of course, I saw the same thing happening to our son, it changed me. I said, "Well, maybe there's some digging I need to do inside of myself. To see here that there are lights hidden under bushel baskets, just like there are in the bedroom of our home." And frankly, that book, and many books since, I've searched all over the world for folks who've been left behind, in Pakistan, and Afghanistan, here in America, but in some ways, the most dramatically left behind person, by a twist of neurology, was our own son. He helped teach us, both of us, things that we might not have otherwise learned.
And his older brother, Walt, said it best. He said, in a speech he gave at his camp when he was 22, he said, "Let me tell you about my best teacher: my brother." And he said, "You know, some people would call that a blessing in disguise. There's nothing disguised about it." And that's the way real life works. It's not a fairy tale. It's what we know gives us our sustenance and constancy. Often against our will, often from adversity, often from slighting things that we least expect."
JANE WILLIAMS:
I found Owen's insight about the sidekicks in Disney films really beautiful. I wonder if we could end with that. Explain to us who sidekicks are and why they matter, Cornelia.
CORNELIA SUSKIND:
The sidekicks are, of course, in Owen's pantheon of Disney movies, are the hero sidekicks, and he really embraced them from very early on, and we learned a little bit later, as he developed this theory himself and connected it emotionally to what was going on in his life at the time, to the people who do get left behind, not the central character. And he very much identified with all of the sidekicks.
RON SUSKIND:
And his emotional landscape, he finally later, in his mid-teens, expresses to us, where he says, "Well, this idea I have for a movie, just this one idea, is 12 sidekicks searching for a hero. And in their journey and in the obstacles they face, each finds the hero within themselves." That's Owen's story, he and kids like him. And every day, he says, "I will not get redrawn as a hero, I'm ever a sidekick. Here to help the hero fulfill his destiny to help others. But I'm ever searching for the hero in myself every day." Well, whatever religion or philosophy you embrace, that's the real stuff.
JANE WILLIAMS:
It really is. And amazing humility going along with it, because he is an extraordinary artist, and so talented. This is a beautiful story, I highly recommend it. Life, Animated: A Story of Sidekicks, Heroes, and Autism. Ron and Cornelia Suskind, thanks so much for being with us.
CORNELIA SUSKIND:
Thank you, Jane.
RON SUSKIND:
No, thank you, Jane.
JANE WILLIAMS:
And that's going to do it for our program this week. Our thanks to the Suskind family. We hope you'll come back and join us again next week at this very same time for another edition of Bloomberg EDU. For all of us on the EDU team, I'm Jane Williams, and you're listening to Bloomberg Radio.
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