At age 76, Susan Faludi's father underwent sex reassignment surgery. When Stephen became Stefanie, the feminist writer sets out on a journey to better understand her father -- an exploration that becomes an inquiry into the meaning of identity.
According to the Centers for Disease Control, one in 68 children has autism. There are nearly 60 different disorders associated with autism, which complicates the challenge for families, doctors, and therapists hoping to help. Writer Ron Suskind and his wife, Cornelia, found an usual way to connect with their autistic son, Owen: Disney movies, which fascinated him when he was young. Ron, Cornelia, and Owen’s older brother, Walt, used Owen’s attachment to Disney characters to forge a deep emotional connection with him – something they thought had been lost forever. We discuss the remarkable story of how storytelling rescued an autistic child, and also explore the ongoing efforts to reach other children locked in inner worlds.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. When Owen, a lively, engaging and active little boy, was almost three, he fell silent. His parents knew something was very wrong. They learned it was autism. Now, in a new book, Owen's father, writer Ron Suskind, describes the family's often deeply frustrating struggle to help Owen and how they stumbled on the key to connection -- Disney characters. The book is titled, "Life Animated." Ron and Cornelia Suskind join me in the studio.
MS. DIANE REHMFrom NPR in New York City, Dr. Barry Gordon, professor of neurology and cognitive science at Johns Hopkins University School of Medicine. Dr. Gordon is also the father of an autistic son. Do join us. 800-433-8850. Send us your email to firstname.lastname@example.org. Follow us on Facebook or Twitter. And welcome to all of you.
MS. CORNELIA SUSKINDThank you, Diane.
MR. RON SUSKINDGreat to be here.
DR. BARRY GORDONGreat to be here, in a sense.
REHMGood to have you all with us. Cornelia, tell us about Owen and how and when you began to sense something was wrong.
SUSKINDWell, Diane, it was rather dramatic in that we moved from Boston to Washington D.C. for Ron's job. And when we arrived in Washington, within I would say a month of our moving, it was very clear that Owen was losing language and losing motor skills and not able to sleep. And he stopped eating and was crying and very fussy. He was two-and-a-half at that point, a little more than two-and-a-half. And so it was a very dramatic drop off. Initially, of course, I thought it was moving, you know, change.
SUSKINDAnd he'd get over it and everything would be fine. And it just deepened and got worse over the course of several months.
REHMHad he been talking and walking and behaving as a normal child would at that age?
SUSKINDAbsolutely. He was completely typical in every way. I mean we had not an inkling that anything was wrong with him. When we look back now, we can see little signs of this or that. But he was speaking. He was walking normally, at a normal gait. He was very engaging and happy and just a regular little guy.
REHMSo, Ron, you and Cornelia took Owen to various doctors, or one doctor, and what were you told?
SUSKINDWell, we finally get to a developmental specialist who says, "Sit down. Let me explain. This is what's called autism." Now that's a blow that we didn't expect. We didn't know much about autism at that point. We knew what most people knew. We saw "Rain Man." That's what we knew. That's public knowledge at that point. And Cornelia and I almost can see those people -- those two people sitting in the chairs, she and I, even now, like it was just last Tuesday. You know, we were just, were frozen. And it's almost like our life really starts to change there.
REHMAt that moment.
SUSKINDYou know, they explain, he may never get speech back. Many kids with what, this was called a regressive autism, they're very similar to other autistic kids, but, you know, it's a bit of a trick of the light, where they present as typical and then they regress fast. He may never get speech back. You have to think about your life in a new way. You may have to support him for the next 50 years and 30 years after you're dead. And there you go. And we just were thrown into a tizzy.
REHMAnd Dr. Barry Gordon, how common is what Cornelia and Ron have described? Namely, a child who seems to be doing just fine and then all of a sudden a change. How common?
GORDONWell, it's fairly common. Now, I'm not a clinician in autism. I'm a father and I'm a researcher in the area. But, as Ron mentioned or Cornelia mentioned, about one-third or so of the kids who ultimately are called autistic, at least in classic autism, develop this so-called regression. Their Owen was a little atypical in the sense that he seemed completely normal beforehand. In many cases, the kids are often a little delayed or something's a little wrong, but it's well within the spectrum of variety that you expect in kids of that age. And only in retrospect is it appreciated that something was different, and that was the beginning of the precipitous change.
REHMSo your son, Dr. Gordon, is now, what, 21?
GORDONHe's almost 22. He was not regressive.
REHMHow early did you suspect something was going on with him?
GORDONWell, at six months we had confirmation that he was what's called hypotonic. A child at six months doesn't do a great deal. He wasn't doing very much of anything and very floppy. But, in retrospect, we actually knew even at three months, because he was -- something was wrong. He was irritable. And even perhaps before that, because he was what was called a footling breech. He hadn't moved around in the womb the way children normally do. And that, in retrospect, may have been part of his low tone, his low muscle strength.
REHMI'm sure, Ron, you and Cornelia both did a tremendous amount of research. How many children are there who are born with or develop autism later on?
SUSKINDWell, you know, the numbers are a little fudgy because, you know, they're changing so fast. Obviously the CDC reports of a few weeks ago that it's one out of every 68 children are now in the autism spectrum. And one out of every 42 boys, because it's five-to-one boy-to-girl. And that's 2.5 percent of the male population of the United States. That's a stunning number. And researchers at Columbia University, they have a fabulous team up there that I'm sure Barry knows, really had dug deeply into this issue of prevalence.
SUSKINDAnd they say that, you know, 50 percent of this growth cannot be accounted for. And they looked at every possible indicator -- heightened awareness, looking for ways in which are diagnosable in this fashion, everything under the sun. Still 50 percent of the growth is a mystery. And I think that shows some of the fear that's out there as well as the confusion of many, many people. About a million kids, maybe two million people total are on the spectrum.
REHMSo, Cornelia, as a mom, what kind of support did you have? What did you feel you had to do? How did you react? And what kind of help did you get?
SUSKINDWell, we were very lucky to have moved to Washington. We couldn't have known it at that time, but we moved in 1993 and we found an amazing developmental pediatrician, Alan Rosenblatt. And he said to us, I will be your quarterback. There was obviously much less known then than is known now. There were many fewer therapeutic options. But we immediately started early, intensive intervention with speech therapy, with occupational therapy, with play therapy. But it was a long row to hoe and we didn't have family here. We had only a couple of friends. So it was really each other that we turned to for most of our support.
REHMTell me about your internal feelings as mom, when you realized something was very wrong with Owen.
SUSKINDWell, it was terrifying. I mean it was completely...
SUSKIND…terrifying, because initially, of course, I assumed it was just moving, you know, change. And he'd get over it.
REHMSo you blame yourself in some ways.
SUSKINDOr me, she blamed me.
SUSKINDI'm the one that made it...
REHMI can understand.
SUSKINDI'm the one that made us move.
SUSKINDBut you do blame yourself. And you go through that process of the why. You know, looking for the ideology of it. How -- why did this happen? How did this happen? And fortunately, because we had such amazing doctors and therapists, I didn't really -- we didn't spend too much time going down that road, because we didn't have the time. But what I did feel was, we had to spend every minute focusing on his therapy. And the thing that I did feel, I would say, overwhelmingly, was enormous anxiety, because at that point, what they were saying was, if a child does not get speech by the time he's five, he will not get speech.
SUSKINDAnd so every morning, literally, I would wake up in a cold sweat thinking, okay, what am I going to do today? How am I going to, you know, help him along? Where are we going to go? How am I going to interact with him in such a way that it will spark some kind of something? And a lot of it was grabbing at straws. I mean, we had wonderful therapists and he was in a wonderful school in Rockville, Ivymount, but it was -- it was terrifying.
REHMAnd, Ron, for you, equally terrifying?
SUSKINDWell, sure. I mean, I have to go to work every day and, you know, Cornelia was a journalist like I am. And she basically said, look, I'm 24/7 at home. You need to go out and make some money. You know, the joke was, friends of ours -- actually a doctor who became friends with us said, "You know, what do you do for a living?" I said, "I'm a newspaper reporter." He's like, "I'm so sorry to hear that. Have you thought about private equity? Investment banking is a nice way to go."
SUSKINDBecause the costs are just overwhelming.
SUSKINDAnd, you know, Cornelia really starts carrying the ball, morning, noon and night. I'm coming home at night and she's telling me stories of the day. And, you know, we just began to settle into a new kind of a life where we stopped thinking much about Owen's future. You know, what we found is that you carry around these expectations for your kids that are often unrecognized, you know, Nobel Prize winners and, you know, prima ballerinas. And to know how many of those you carry, just pull one out one at a time and smash them in the corner. That's what we did.
REHMRon Suskind, he's the author of "Life Animated: A Story of Sidekicks, Heroes and Autism." His wife, Cornelia is here as well. Dr. Barry Gordon, on the line. Stay with us.
REHMAnd in this hour we're fortunate to have three people who are very familiar with autism. In fact, Ron Suskind has written a new book. It's titled "Life Animated: A Story of Sidekicks, Heroes and Autism." Ron Suskind and his wife Cornelia Suskind are here in the studio with me. Their son Owen seemed to develop some very strange symptoms at about the age of three-and-a-half.
REHMOn the line with us from our NPR studio in New York, Dr. Barry Gordon. He's at the Johns Hopkins University School of Medicine. He researches autism an in fact has a child of 21, a nonverbal son with autism. All right. So Ron, Owen had always loved Disney movies. What do Disney movies have to do with autism?
SUSKINDWe didn't think anything at the start.
SUSKINDYou know, he loved them, like all kids this age love them. And he's 23 now, just turned 23. This was a golden age of Disney. Remember, they kind of came roaring back, Little Mermaid, Beauty and the Beast, Aladdin and the Lion King. Every kid watched them, including Owens older brother Walter. They watched together.
REHMAnd Walter is absolutely fine.
SUSKINDYeah, fine, you know...
REHMOkay. Typical, yeah, typical.
SUSKINDTypical, so-called, whatever that means, he's so-called typical. And he -- Owen loved them before the autism's onset, as we all -- as the kids watched them. Afterward it seemed to be the only thing that would give him comfort is to watch these movies over and over again. So he'd go up to the bedroom of our house in Georgetown and he would sit there every free minute that he wasn't scheduled -- and of course Cornelia had him scheduled mightily -- he would watch, especially the Little Mermaid. Loved that movie. Seemed to just light up. He was calm.
SUSKINDWe said to our specialist, is this a bad thing? They said, well how is he? Well, he seems joyful. Well, that's fine. He seems comforted. Yes. Well, that's okay. Well, after a year of this -- and he's not speaking at this point -- we're up in the bedroom watching the Little Mermaid. And Owen has been murmuring a bit of gibberish in the past few months, including juicervos, juicervos.
SUSKINDCornelia thought he wanted more juice but he didn't seem to want the juice.
SUSKINDWell, he gets to the part of the movie, he's rewinding it over and over. His brother's saying, Owen, stop rewinding. Finally we see it's Ursula the villain saying to Ariel what it'll cost to become human, just your voice. And Cornelia says, it's not juice. And I'm like, what she says it's not juice, it's just. I grab Owen, just your voice, just -- he starts saying juicervos, juicervos and we're jumping on the bed. Cornelia calls that our Annie Sullivan, Helen Keller moment.
SUSKINDWell, of course, you know, then we go to our beloved team of doctors and they said, let us explain. This is called echolalia, meaning kids who lose speech they echo, just like a parrot. They hear a sound, they repeat it back. It shows he may want to connect, which is a good thing but he doesn't probably understand what the words mean.
SUSKINDWell, this goes on for years as Cornelia is trying everything under the sun. Next year it's bootylieswhittin. That would be beauty lies within. We're saying, wow, how would he pick that one phrase from an 89-minute movie? It seems to be the theme of it. Well, no way of knowing up until Owen is six-and-a-half. And again he has very modest speech, very much kind of one-and-a-half-year-old, I want this, give me that.
SUSKINDBut his older brother Walter, who is, you know, a typical kid but also the brothers of a disabled person -- and he's very independent as these kids often are -- well, he seems to get emotional only one day of the year, his birthday. It's not something that Cornelia and I paid much mind to. Owen walks in on the day of Walter's ninth birthday. Owen is six-and-a-half and he says, Walter doesn't want to grow up like Mowgli or Peter Pan.
SUSKINDThis is like a thunderbolt just went through the kitchen. We just are stunned. Then he runs off. We don't stop talking for four hours and then Cornelia says, we got to find another way back in. And that's when we start talking in voices. That night I go up to his room and I play a character from Aladdin, Iago. That's Gilbert Gottfried. He's the villainous sidekick to the villain Jafar speaking that voice. Owen speaks back to the puppet.
SUSKINDAnd that's where we begin a kind of craziness in our house where we played animated characters from all of the movies. Owen had memorized 20 Disney movies as sound alone.
SUSKINDBut if you threw him a line he'd throw you back the next line. And then you better have the one after that.
REHMAnd Cornelia, you were doing this as well.
SUSKINDYeah. I mean, it was really a family affair. Walter was certainly into it. Walter was the one who brought Disney into our home initially. We like to call him Gaston. And so, yeah, we were very much all involved with it. Ron has always had a special, shall we say...
SUSKIND...facility with voices and acting. So he took the lead but we were all part of it.
REHMAnd Barry Gordon, how does this resonate with you and the whole idea of an autistic child being able to speak through some other form -- some other medium?
GORDONWell, it has a great many resonances actually. There's -- I'm a cognitive neuroscientist and I try to think about, as Ron and Cornelia try to do, what is going on inside Owen's head? And I hear an awful lot that's going on inside his head from this vignettes. And what they were basically doing, it seemed to me, was using it as a scaffolding. What Owen was doing, what they were doing was using the fact that he had, first of all, been able to produce the sounds and had memorized them, even though he may not have completely understood what they meant.
GORDONHe was also using the Disney characters and the Disney movies, which as Ron mentions in his book had been designed so that people could understand them even if there was no sound. So they're very compelling stories there they can capture at many different levels. And they were using what traces of abilities and understanding Owen took from these movies. And the sounds, the words that these movies provided to build a meaningful system for him of communication, of understanding and also of emotion.
GORDONBecause, as Ron and Cornelia mentioned, or as Ron mentions in his book, Owen in some ways was a typical for some kinds of autism in that he had emotions. He understood feelings. You know, a lot of autistic individuals have a tremendous problem with that. And that's one of the major barriers because they don't need to communicate. There's nothing they need to say to anybody because nobody really exists.
REHMBut it is interesting that the doctor sort of warned you that maybe he wasn't really understanding. He was just echoing words.
SUSKINDRight. Absolutely. And of course, you know, at that point we understood much less than we obviously do now. And so there were many times when we weren't sure what he understood or what he didn't understand. And as Dr. Gordon said, we were really just trying to make that connection and to see the joy that he expressed when he was watching these movie, when we would do this play, this inner play. It was so clear to us that that was our only way in. And it really was the only way in.
REHMBut then you begin to realize that more is going on than you thought at first.
SUSKINDAbsolutely. You know, over the years -- and this is -- we were in a 20-year improvisation here -- but over the years we see he's using these as tools. He's taking the characters and their emotions to understand essentially as a template what the world is like. He's turned it into a kind of emotional language.
SUSKINDNow what I found -- what we found with Owen, and we even find with some other kids, many who have very modest speech and maybe not a way to express emotions, we found that many of them through this mechanism are able to express emotions that even surprise their parents, much less us. It's almost like they're working at it, nonverbally in many cases, at making sense of the world through this mechanism.
SUSKINDAnd that's part of what's exciting about this. We're getting calls from -- thousands of parents have emailed us and called saying, well my kid does that too. And is there a way I can get in and use it. Because the whole issue that Barry, who is of course a leading expert on this, is talking about is the inability to express emotion. Does that indicate the lack of emotion? And that's always been the shell game with autism.
REHMBut, Barry, I gather your son was always nonverbal. Is that correct?
GORDONThat's correct but in a very important way. And one thing I'd like to emphasize, we use the term autism. But as Ron mentioned, it actually covers many different kinds of things. We even use the term the spectrum of autism, but actually it's more than a spectrum. It's a number of different dimensions of things that are right and wrong.
GORDONSo my son, although technically nonverbal, can actually read and write to some extent at a second-grade level. And, you know, though he cannot utter a word. And so one of the challenges in dealing with individuals with autism, is trying to find their unique patter of strengths and their unique disabilities that you can then try to work on. And Ron and Cornelia found those in Owen. There's a number of similarities to what other children have but they're not all exactly the same.
REHMSo, Cornelia, once you began working in this way with Owen, how did you begin to know that three were feelings there, that there was a response deep in him?
SUSKINDYeah, well, you know, as Barry said, Owen -- we were -- it was easier for us because Owen -- there was always an emotional response from Owen, even when it was not a happy response when he was very small and he started to sort of regress. But he very quickly -- it became very clear that he had a strong emotional core. And so tapping into that was easier.
SUSKINDWhen he was at a nursery school, he would notice -- even when he had very little language, he would notice if a child was out of the class and go over to their cubby and look for their coat, and go over to the teacher and bring them over to the cubby and where was that child. So it was very clear that he had a lot going on in there if we could just reach it.
REHMAnd do you recall that first moment when you really knew you reached it, Ron?
SUSKINDWell, you know, there was a difficult period, which we write about in the book, where Owen was at one of the great schools in America, the Lab School of Washington. And it was a stretch for Owen. He -- many of the kids -- they were all learning disabled but many of them had more easily manageable challenges. Learning disabilities like dyslexia or ADHD or -- and Owen was a spectrum kid among many kids like that.
SUSKINDWell, it was difficult for him to stay. And ultimately Sally Smith said, I'm sorry, this isn't going to work out. It was a difficult time. Owen was 11 at this point. He didn't have much speech. He couldn't really express himself. But he goes into the basement of our house, which is this underground layer, if you will, where all the Disney movies are. And he begins to draw sidekicks, one drawing after another with enormous intensity. Almost like a Disney animator.
SUSKINDAnd then we begin to understand what's happening when we find a sketch book -- a first sketch book with a hundred sidekicks, no heroes. And at the end two things are written in a scrawl that's like a kindergartner at that point -- Owen's 11 -- and it's, I am the protector of sidekicks. And the last line is, and no sidekick gets left behind.
SUSKINDThis was his way of speaking to us through this chosen language. And of course, at that point Cornelia and I say, oh my gosh, he does see the world and he does see that he's being left behind, other kids racing forward. And he becomes an aficionado. There are hundreds in Disney. They help the hero fulfill their destiny. Owen feeling like a sidekick himself says, I am one of them. I help someone else fulfill their destiny. I am not the hero.
REHMAnd you're listening to "The Diane Rehm Show." And here's an email to precisely that idea. This is from a mom of a child on a spectrum. She says, "There seems to be an assumption that autistic children who cannot communicate or interact in a typical way i.e. our way, are not quote "there." But when we presume competence and look outside the box for ways to communicate, meeting them halfway, as Owen's parents did, the doors of communication open.
REHMCarly Fleischmann, an autistic woman in her twenties, was assumed to be not there until she started to type on a computer at the age of 11. We need to stop thinking about autism or change thinking. We must presume competence so we never stop looking for that key to interaction," Cornelia.
SUSKINDThat is just the truest thing that I've ever heard. We always would tell teachers and camp counselors and therapists working with him that while it seemed that Owen was not listening, did not understand what you were saying, he knew every single thing that was going on.
REHMHe was taking it all in.
SUSKINDAbsolutely. Absolutely. And presuming competence is so important, both for the child and for the parent. Because as a parent, as a mother, a father working in the trenches with your child every day, it's very difficult, very, very difficult to keep your stamina up, to keep your enthusiasm up, to keep your hope alive.
REHMBut do you believe that this method that you found worked with Owen could work with a lot of children?
SUSKINDWell, we do, we do. And it's actually the stuff of formal research since this book came out and that New York Times excerpt came out in mid March. It's what we needed to give it a name. People said, what do you call it? We said, we don't know. We called it Disney therapy for years. But the fact is affinity therapy is more accurate because there are many affinities. Some kids are Thomas the Tank Engine kids. They love that. Animate is big, Disney of course is huge. Some kids are map kids or train kids.
SUSKINDEach of these affinities we feel may hold a kind of DNA. The DNA of everything is in all things. And if you go in to the affinity open minded you might help them come out with you.
REHMRon Suskind and the book we're talking about is titled "Life Animated: A Story of Sidekicks, Heroes and Autism." Ron Suskind, his wife Cornelia Suskind and Dr. Barry Gordon are with me. And I hope you'll stay with us.
REHMAnd welcome back. If you've just joined us, Ron Suskind is the author of a new book. It's titled, "Life, Animated," all about his family, his son, Owen, his other son, Walter, his wife, Cornelia, and their life together. It's "A Story of Sidekicks, Heroes, and Autism." We'll read this email before we open the phones. It's from Martha.
REHMAnd she says, "I've not yet read the book, but read the New York Times magazine article and have heard other interviews. Something I've not heard mentioned, but for which the Suskind parents deserve praise, is how their non-Autistic son, Walter, was a part of helping Owen and seems not to resent the effort spent. Having a child with needs is often terrible for siblings. But the Suskinds' inclusive parenting seems not only to have helped Owen, but Walter, too. I think that dynamic is one of the keys to their success." Cornelia?
SUSKINDWell, that was certainly -- that's a lovely note because that was certainly our most fervent dream from the earliest days of finding out about Owen's situation and diagnosis. Walter is two and a half years older than Owen so of course we worried that all of our attention would be going to Owen and what would happen to Walter, and would he end up resenting this little brother.
SUSKINDAnd leaving him, ultimately. And we were really fortunate in that Walter was like his father, a very out there little guy. And people were very drawn to him. He required a good bit of attention as a very young boy, and got it. And just was a very happy kid. And when the bottom dropped out for Owen and for all of us, it certainly -- Walter was certainly aware of it. He had just started kindergarten in Georgetown.
SUSKINDAnd his life changed completely, forever. But he really -- even as a small kid, just joined in. And we brought him in as much as we could in as appropriate ways as we felt, you know, would be okay. And that developed through the years. And he has always been an extraordinarily loving brother. They have a very close relationship now.
REHMAnd the photograph of the two of them is on the back flap of the book. Did he participate with you in this Disney approach?
SUSKINDAbsolutely. Walt has a great memory. He loved these movies, too. Now, it wasn't something he would tell his friends. Walt was out there trying to be a cool guy…
SUSKIND…you know, 11, 12, 13, he's a football player, he's…
SUSKIND…very popular, but he was fully in. And it's interesting because I think as a reporter turning the hot lights of investigation on a kind of emotional inquiry of your own family, I think sort of the toughest part was having to sit Walter down. He works here in Washington for the Consumer Financial Protection Bureau at the Elizabeth Warren Agency. This was not on his schedule. He's like, "Okay, Dad. What do you have to do?"
SUSKINDAnd I said, "I'm going to have to spend about a week asking you very tough questions. And you have to not please me with the answers. Tell me the straight stuff." And he did. And it was quite uncomfortable for both of us.
REHMGive me a sense of those questions.
SUSKINDWell, you know, he says, "Look, you and Mom created a story for me, a narrative. That's a big thing. You guys -- you do, Dad, you create stories. The stories you wanted to tell yourself about Walt's the most independent kid, but he won't leave his brother behind." And, you know, that was our story. Well, Walt said it was harder than that. He was often embarrassed by his brother. You know, how could he not be?
SUSKINDSix-year-old boys are a brutal lot. And then, you know, he comes to a kind of reckoning with it as he's a teenager. And fully, publicly, when he gets to be about 22 -- he's a counselor at a cap. And he steps up -- many of the kids don't know he's an Autistic brother. And Walter says, "Let me tell you the real story of my life, about the best teacher I ever had. And that's my brother, Owen."
SUSKINDAnd Owen, we say, Walter is his best therapist. So the two of them have a bond. And recently Walt was interviewed and Cornelia and I are sitting on the couch with him. It was on Huffington Post or something. And he says, "I see myself at 70 and Owen's 68. We'll live near each other. I'll be there for him." So, you know, they come around and come of age.
REHMAnd, Barry Gordon, does your son have siblings?
GORDONYes. He has an older half-brother, who was very important in his development, was one of his best therapists, in fact. But, you know, by the way, I really want to also emphasize -- and although Ron wrote the book and although I'm here talking, it was my wife, Renee, who really did everything. And I'm sure Cornelia had a tremendous role in things. And I know she's acknowledged that way in the book.
GORDONSo even though perhaps Ron's the mouthpiece and I'm the mouthpiece, the glue that held everything together and perhaps the captain, commander, emperor, empress or whatever, in our family's case was Renee, the mother, who made sure that there was a balance, who made sure all the million and one things that had to be done could be done. And that was critical in the progress my son made and, in fact, in the progress my older son made as well.
REHMWell, and that's why I'm so happy both of you are here today. I know, Ron, you wrote this book. You put pen to paper, but nevertheless, it couldn't have happened without Cornelia.
SUSKINDIt wouldn't have happened. I mean, Cornelia was really my partner in writing the book. She would write me 3,000-word memos about our life. I'd try to craft it. She said, "No, you're wrong about that." She was the captain of the ship as Barry says.
SUSKINDBeautiful line, Barry.
REHMAll right. I'm going to open the phones. First to Chapel Hill, N.C. Hi there, Larry. You're on the air.
LARRYHello. Thank you for the show.
LARRYThe avenues you talk about that -- reaching an Autistic child, I also found was also the same with people with Alzheimer's. You just have to get on that avenue that they're on, and with my son it was my saxophone when I played the high register. And he appreciated that.
LARRYIt's been a long road, though. And he's now 22 and still doesn't walk or talk, but he does react extremely -- his emotions are just great. And he's got -- every time he goes to camp he gets the award of Heart of Gold and Lungs of Steel. It does…
LARRYAnd he can -- even when he -- right after we noticed he had problems, he was able to hold his breath and stay under water when he was like two months old for a long time. And he used to scare everybody. And he still can do that and that's where he got the Lungs of Iron. But my question is this -- actually my -- I'm curious about the -- just take this lot number down.
LARRYBecause I've talked to doctors about this and they said that they would testify against the government, but not against the pharmaceutical companies. So I won't mention their name, but the number is 2A41126 and 2A41127. They both met the criteria 12 times be the -- recalled by the FDA and they weren't. And that was back in '91 to '93.
REHMAll right. Barry Gordon, do you know anything about that?
GORDONNo. This is a very complicated topic and one that I've been fortunately spared. I've been working on research to try to improve individuals with autism, not to try to discover the causes.
REHMAll right. Thanks for your call, Larry. And let's go now to Robert, in Margate, Fla. You're on the air.
ROBERTHi, Diane. Thanks for taking my call.
ROBERTI'm not an expert in autism, but I have a son that works for a company called Asuragen, out of Austin, Texas. And they have a test called Fragile X to check for mutations in Fragile X. And I'm just wondering if your guests are aware of that.
REHMAll right. Thanks for your call.
SUSKINDWe certainly are aware of Fragile X. And I'm sure that Dr. Gordon can speak to it much better than we can. Owen was tested for Fragile X when he was very small. And Dr. Rosenblatt (sp?) had ordered numerous genetic tests in trying to figure out what was going on with Owen. And that was ruled out.
REHMIt was ruled out?
REHMOkay. Barry Gordon?
GORDONRight. Awareness right now of autism is quite high and there are standards that have been put out for what testing should be done to look for conditions that also include autistic traits, like Fragile X. So I think that that's fairly standard now in the United States, to look for such things, and people who are aware and their pediatricians who are aware. That's really not so much a problem as it may have been in days of old.
REHMAll right. To Brian, in Alexandria, Va. Hi there. Go right ahead, sir.
BRIANGood morning, Diane. Thank you for taking my call.
BRIANWell, I've been finding this very interesting listening to because I have a son who's also on the autism spectrum. And we also noticed early on his affinity with movies. And this dialog that really connected with him -- well, he had a lot of other issues. He would sit and watch a movie and just absorb it in ways that didn't seem -- the rest of us did. The funny thing, as you mentioned earlier, that the only thing you knew about autism was the movie, "Rain Man," that came back out in the mid-'80s.
BRIANI saw that like everybody else did back then, and didn't see it again until recently. And was dumb-founded at how similar it was in our son. I don't know if you recall, in the movie, the character Rain Man was fascinated with the Abbott and Costello films and would frequently mention "Who's on first, What's on second," and knew the entire routine. Well, again, not having seen the movie in over 20 years, my son also had an affinity for Abbott and Costello movies.
BRIANHe liked old black and white movies. He watched the Disney movies, as well, but he really connected to old black and white movies, particularly Abbott and Costello, comedy, sort of the slapstick stuff of Marx brothers. And can repeat and do entire scenes of dialog from those movies and does it at times when it actually relates to something that was going on around him.
BRIANHe'd see something, a woman with a hat or something and would start blurting out a scene that would seem like gibberish to somebody else, but we started to realize that it had an exact connection. Something was happening right here and now that was related to the film. And that's how he would kind of express it, is a scene or a bit of dialogue from the movie.
SUSKINDYeah. Well, that's your -- Brian is seeing it. And we are now part of a new way, I think, of thinking about this, where these affinities, many of them -- someone came up to me the other day, said, "My kid's into '40 and '50s black and white movies." I said, "Fine. Plenty there." They're being looked at as more pathway then prison.
SUSKINDAnd that's part of what this affinity therapy and what the researchers at MIT, Yale and Cambridge University are studying, what happens to the brain when the kid -- or adult -- locks onto their sweet spot. This passion. Look, we all have these things in us.
SUSKINDThese kids are very extreme cases of it. We make sense of the world through movies. We have our passions. They're viewed as not -- something they shouldn't have 'cause it's the exclusion of much else, but now we're seeing maybe it's a reversal of the telescope. Let's see what that affinity is, what we can do to help essentially build it into a vehicle for the child to have social connection. That's part of what's exciting about what's happening now with this notion of affinity.
REHMYou know, I'm sitting here thinking about my own growing up and how important movies were because they were bigger than life. Now, has Owen watched both movies on huge screens and movies on smaller televisions?
SUSKINDOh, pretty much any screen you can imagine.
REHMAny screen, yeah.
SUSKINDYeah, he loves going to the movies. And it's really funny. He can tell us -- he'll talk about a movie that came out in, say, 1995, when we were living in Washington. And he will tell me which theater we saw the movie in, it was 4000 Wisconsin Avenue, it was about 5:00 o'clock, Walter was there, Dad wasn't there, you and Walter -- it's just -- it's incredible.
REHMAnd you're listening to "The Diane Rehm Show." I want to make sure to take a call from Alex, on Long Island, N.Y. You're on the air.
ALEXHi. First I just want to express and applaud an appreciation for what these parents are doing and for sharing it with the rest of us through their books and their writings. And also to say that I have worked with children with special needs and specifically autism for the last two years. And last year I worked with quadruplets who were all diagnosed with autism.
ALEXAnd it was my experience that sometimes it was quite frustrating working with other adults who, instead of taking the time to try and understand the world that the quadruplets appreciated and lived in and liked to stay in, they were constantly trying to bring them into our world. And rather than understanding that the worlds are just different and that they just have a different view of the world than ours, they were trying -- they would say that it was wrong and that they needed to be brought into our world.
REHMYeah, yeah. Really fascinating.
SUSKINDYeah, I mean, it's absolutely something that every parent of an autistic child sees and feels from others. The thing that Ron and I ultimately learned, and I think that one of the most important things that parents and educators and therapists can know and remember is the word respect. Respect for what these children and adults are, for what thoughts and emotions they have inside of them, and to approach the teaching and living and learning with them with respect for who they are and the affinities that they have. And that can be the pathway to reaching them.
REHMBut you have to find that pathway.
SUSKINDExactly. You know, we have a view that basically a pathway gets blocked and they build what we call compensatory muscles. The brain finds a way -- this is what we know about the brain. It's much more plastic than we thought. It is very adaptive in finding what it needs. These compensatory muscles are what Owen lives on. This particular affinity and the skills he builds around it. The key is what is that for these kids, your kid?
SUSKINDBecause we found many kids we've met have something. Have some ability that they've built in response to the traditional pathways being blocked. And that ends up often being linked to their identity and who they are and a sense of what's possible in their life. So Cornelia's idea -- she says, "Respect the affinity and that might lead to better understanding of what's possible in their lives."
GORDONBarry, here. Can I make a comment?
REHMVery quickly, we're almost out of time.
GORDONI think finding the affinity is important. It's also important to understand that what's going on in a person's mind may not be that understandable to the outside at all.
GORDONWhat goes on in the mind is very complicated.
REHMDr. Barry Gordon, of Johns Hopkins University. Ron Suskind, he's the author of "Life, Animated: A Story of Sidekicks, Heroes and Autism." And Cornelia Suskind, his wife. Thank you all. And congratulations to you. Thanks for listening, all. I'm Diane Rehm.
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