What if you were trapped in a Disney movie? In all of them, actually – from Dumbo to Peter Pan to The Lion King -- and had to learn about life and love mostly from what could be gleaned from animated characters, dancing across a screen of color? Asking this question opens a doorway to the most extraordinary of stories. It is the saga of Owen Suskind, who happens to be the son of one of America's most noted writers, the Pulitzer Prize-winning journalist and author Ron Suskind. He's also autistic. The twisting, 20-year journey of this boy and his family will change that way you see autism, old Disney movies, and the power of imagination to heal a shattered, upside-down world.
Ron Suskind is a Pulitzer Prize-winning American journalist and best-selling author. He was the senior national affairs writer for The Wall Street Journal from 1993 to 2000 and has published several books: A Hope in the Unseen, The Price of Loyalty, The One Percent Doctrine, The Way of the World, Confidence Men, and Life, Animated. He won the 1995 Pulitzer Prize for Feature Writing for his series of articles in the Wall Street Journal that later became his first book, A Hope in the Unseen. Suskind has written books on the George W. Bush Administration, the Barack Obama Administration, and related issues of the United States' use of power.
I had three problems with this book. First, the author, who is quick to tell us that he won a Pulitzer, was the wrong one to write this book. His wife, also a journalist, spends far more time with their autistic son; why didn't she tell their story? It can't be that Pulitzer, because Suskind is guilty of the shmaltz he tells the readers good reporters avoid. And his writing is confusing. I often reread his run-on-sentences to try to figure out what he was trying to say. Second, the author's son was atypical. So many times his behavior just didn't jive with autism. Suskind goes into great detail about his son's deep, compassionate insights and the reader is left scratching his or her head. Is this really autism? Whose definition are they using? The child did struggle, but Suskind just didn't flesh out what life with his autistic child was like, day-to-day. Finally, the author's treatment plan for his child must have cost a fortune. Suskind hires every specialist known to man, including a one-on-one counselor for camp, and even renting a room for $500/month at a church for his wife to homeschool their child (in order to get him into the best special ed high school). As a parent of children with special needs, I just couldn't relate to this family, nor did I learn about (typical) autism treatment. Not recommended.
This is a very biased review. I'm an avid reader with a sentimental temperament. Books often get to me, but I've never felt as emotionally connected to a book as I have to this one.
I am almost exactly Walt's age give or take a few months, and I have an autistic brother who's just a year older than Owen. I grew up in this 90s Disney generation with him, and, although I and my parents are different from the Suskinds in many ways, I could identify with so much of this book.
It was at parts painful and at others uplifting. I heard about the book almost by accident, but I am so glad I read it.
I really wanted to love this book. I so, so wanted to love it. The idea of using a child's interests to help them meet their goals, to run with it, to let it be the world, to not worry about whether it's "too much" -- I love that concept. But that's not exactly what this is...
It felt like the book was a race against time to make Owen as "normal" as possible. Achievements were only celebrated when they met what the adults wanted -- a glimpse of "something more". Stereotypes of people with autism were present throughout. The wealth and amount of money the family spent, as if everyone can do that or as if it is mandatory or you're failing. I mean, Owen wants to go away to college, and their solution is to behavior mod his stims out of him, because that's the only way he'll be successful. What?! That doesn't even make sense to me. t never felt like I got to see and know Owen. I never felt like Owen was celebrated AS HE IS, autism and all. He sounds like such a cool dude -- I would love to have met that person in this book.
I don't normally write reviews, but this book deserves one. Suskind tells a deeply personal story about how his autistic son, Owen, used animated movies -- mostly the older, hand drawn Disney films -- as a toolkit to access and develop his ability to understand not only spoken and written language but also emotions, relationships, and his identity. Owen is a guy who was born "neurotypical" but developed the regressive form of autism, such that by the age of three he had lost his language and sensory processing abilities to the point where words, in those early years of autism, sounded like babble, and processing the world and all of its emotional and sensory input was overwhelming. It was so fascinating to read about how Owen sat in the basement, hitting rewind and play over and over again, absorbing the babble and the emotional expressions of his favorite characters, the moral undertones of the story lines, and even eventually understanding the meaning of the strings of letters that drifted up the screen in the closing credits. A turning point (very early on in the book; I'm not giving anything away!) happens during the sixth birthday of Walt, Owen's brother, when Owen -- up until this point only uttering very needs based strings of words-- came into the kitchen after observing that Walt seemed upset and said, simply, "Owen doesn't want to grow up, just like Peter Pan." This utterance is what draws the rest of the Suskind family -- the father, mother, and other son, Walt -- into Owen's Disney world, the entire family taking on the voices of characters and singing the theme songs, day in and day out, in order to "get in there with him" and connect. The rest of the book is a coming of age story, as fascinating as it is moving. Seriously it's SO FREAKING GOOD.
This is a pretty good read about how a family experienced their autistic son Owen and how he learned to survive his life with Asperger's through the teachings of disney films and the sidekicks in them. If you want to read more, be sure to check this book out at your local library and wherever books are sold as well as check out the film by the same name too.
I loved this book. It spoke to me on so many levels - as a mother, as someone who briefly studied Art Therapy, as inspiration for what constitutes a strong family & how to face adversity together...beautifully written, personal story of how a family searches to reconnect with their son, Owen, who is diagnosed with autism.
I can't remember the last book I read where I cried and laughed on the same page! Ron Suskind sure can draw the emotions out of me. On page 217, he is writing about how Owen has developed a coping mechanism for the darker parts of life after brutal bullying and I cried reading Cornelia's reaction. (I LOVED Cornelia! She is the epitome of strength, resolve and good humor.) Then Ron goes on to next describe the method they used to desensitize Owen to curse words...I laughed out loud imagining that scene!
The Suskind's younger son, Owen, had always loved Disney movies. He learns to communicate and connect with his family and eventually with others through this passion. Ron describes the power of memory by saying "...memory is like that. A hook - some powerful association or moment of changed perspective - that helps keep it locked in tight, fresh for retrieval, years hence." Owen derives emotions, dialog and beautiful life messages from his fascination with animated characters. There are many beautiful moments in this book ~ when Owen first says grace at dinner, Owen's bar mitzvah, when Cornelia confronts a parent for staring at a special needs child, the interactions between Owen & his older brother, Walt, when Owen develops a friendship with Jonathan Freeman, the voice of Jafar in Aladdin, etc.
Although I was an "Air Force brat" growing up, I have lived in the DC metro area for years now and it was interesting for me to read how the Suskinds scrambled looking for a school that would accept and help them in their work with Owen. Insurance did not cover his therapy and, although they had financial means that most don't have, it must have been a struggle emotionally & financially year after year. Their motivation (and, approval from Owen) to share his story is to help others and draw an awareness to this issue.
I went to hear Ron Suskind speak at Politics & Prose at an author event last weekend and was surprised to find the whole family present. Howard Norman, a fellow author and long time friend, introduced and began the interview with Ron. They live near one another. They used to write together in the coffee shop of Politics & Prose. It was like "old home" week for this event. Former teachers and neighbors came. Then the rest of the Suskind family joined Ron in the discussion. They all talked about the successes and failures in trying to obtain help for Owen. Cornelia is also a writer and edited the book.
And, Owen, spoke as well. He is so handsome and was very articulate. He responded and answered all questions, made direct eye contact and even sang from the movie "Hercules" for us - "Go the Distance" - so appropriate! The family's hard work has paid off. Owen is moving to an independent living community following graduation, has a girl friend and a job.
The book is dedicated to the older son, Walter. Ron calls him his hero. There was a powerful moment during their presentation when Walter spoke about his brother. He compared their struggle to "The Jungle Book" where they were all working together to get Mowgli (Owen) to manhood. He talked about how embarrassed he was when Owen tried to crawl through a bookshelf once in public after a recent viewing of the movie, "The Pagemaster."
The Suskinds are so direct & honest. They say that Owen changed their family dynamics, but they can't imagine being any other way. Owen is remarkable - his truth, integrity and insights.
Owen is extremely perceptive. In one portion of the book, Jonathan Freeman is discussing the underlying theme of a Disney movie, Aladdin, as "...how in the end, good triumphs.' 'Umm. Sort of. I think it's about more than that,' counters Owen. 'I think it's about finally accepting who you really are. And being okay with that.'"
And, as Ron said at the end of his presentation on Saturday "Different does not mean less."
The good: it was certainly readable, though slick. Kept my attention and kept me reading enough that I finished it in just a few days.
Everybody's journey, and everybody's pain, is different, and big to them. I think it's completely legitimate that this family struggled with their son's autism, and that it was genuinely challenging and painful. That said, it is really, really hard to feel deep empathy for parents who are so very privileged and well-resourced. So many folks I know with cognitive/developmental disabilities or ASD, from my time in community-based disability advocacy to working in customer service in the public library to friends' siblings, are dealing with all of this minus the tens of thousands of dollars for specialized interventions and care teams, or trying to deal with it on top of family and neighborhood trauma. The number of kids with autism in Somali families in Seattle is apparently significantly higher than the general population, for example, and those families are often also dealing with a whole host of other challenges, including unstable housing, language and cultural barriers, lack of high-paying jobs with good insurance, and deeply rooted systemic racism. Hard to hold that up against "no famous person wants to come talk for half an hour to the wealthy donors and parents at this special school." I don't think he's flippant or not cognizant of their relative wealth and the massive amount of cultural/class capital the family brings to the endeavor... but it really does create a gulf for me as a reader.
I don't mean to lack compassion or scoff at the challenges they faced. But. I would have liked a little more of Owen's voice and a little less east coast insider culture.
Meh. On the fence about this book. On the one hand it is beautifully written, and an amazing story of how a family connected through their autistic son's special interest. On the other hand, it is very much a tale of privilege and the great divide between the futures of autistic who have all the advantages a rich family provides, and those like myself who never had the advantages of childhood therapy, a behavioral specialist, assisted living, specialized assistance and schools. This is all glossed over in the book, as if it is taken for granted we all had this team of experts working with us since age 3, went to a 35k a year special needs school, etc. Things like the parents being able to rent an apartment just to teach their son living skills that they don't even live in, using the fathers contacts to get the son introduced to famous Disney animators, etc are just presented in stark almost smug detail.
Minimal credit is given to the effects of privilege on outcome, only the efforts of the family are stressed. To me this book is more an illustration of what so many autistic lives could be if this level of care and intervention was available to all, not just the 1%.
A rather moving video clip on "The Daily Show" and a young relative of mine who may be on the border of the autism spectrum combined to pique my interest in this book, and it didn't disappoint. Suskind turns his Pulitzer Prize-winning talent for journalistic storytelling on his own family's struggle to help his autistic son Owen. I'm not much of a crier, nor am I a parent. But Suskind's story was a cry fest for me, and I mean that in a good way. And the tale of how he and his wife discover the bridge into his son's mind through Disney movies is absolutely rivetting. I just might have to put some of my childhood favorites in the Netflix queue!
I highly recommend the audio version of the book, as Suskind does a fantastic job narrating his own tale (a rarity among authors). You'll also get the wonderful bonus of Owen himself narrating a story he wrote.
Caution: Do not read this in public if you, like me, are an ugly crier. But definitely, definitely read it.
Suskind, in my opinion, is at his best here in how he threads painful pieces of reality through a mesmerizing and moving narrative. He (and the whole Kennedy-Suskind clan) is a hell of a sidekick here. Owen, though, is an inspiration. Really, his perseverance blew me out of the water and his father very beautifully captures the quietest and most contemplative moments like a beam of light that captures all the little flecks of dusts that bystanders wouldn't have the lens with which to see. I have always had great respect for those who have persevered despite physical, mental, or emotional struggles, but I think I'm too quick to characterize them as archetypal heroes without first considering them as whole persons with depths beneath the still surface the likes of which I can only hope to understand.
The book also makes you consider the cost of raising a child on the spectrum and the responsibility that we have as a society to provide resources for those who do not have the funds that this family does. Just as we (or at least, should) invest in public education as it provides tremendous returns, so should we invest with these individuals who do not fit within what is defined as typical because they, too, have valuable contributions through the special lenses with which they see the world.
This is the rambling, badly-edited tale of a pair of wealthy parents who bought their non-neurotypical son the privilege of growing up into a semi-independent adult. Suskind lards the book with constant cues for the reader to find it inspirational, which put my back right up. I suggest that he stick with the shorter form journalism with which he made his name and won his Pulitzer.
I picked up the book, interested to read the rest of the Suskind's story.
The book blew me away.
As someone who doesn't yet have kids, but has been surrounded by "different" kids all my life (my father used to work at a Community Living until I was 12, my uncle is mentally handicapped and my youngest cousin is autistic), I thought I was prepared for reading about Owen.
And for the most part, I was. I had no judgments about Owen, his behaviours, or anything like that. What got to me, and what I didn't really understand before, was what it must be like for the parents. Sure, every parent loves their kid unconditionally, but the amount of unconditional love from Cornelia and Ron, Cornelia especially.
This book will warm your heart, and make you look at your life, and the sidekicks in it, with a different point of view.
A superb look at the immense challenges posed in a family when a child is diagnosed with autism, in this case a particularly heartbreaking type of regressive autism that does not appear until a child's second year, stealing the communication and social skills he or she has already mastered and blindsiding his parents. (As an occupational therapist, I have more than once had a parent show me a video of her child at a first or second birthday party, easily demonstrating skills that we have spent months in therapy trying to regain.) In my opinion, it is also a superb look at the power of a mother's love and sacrifice, not to cure her child (at this time, an impossibility), but to maximize her child's potential in ways few professionals would have dared to dream.
The book club of which I am a part is composed of OT's, speech therapists, and one physical therapist, all of whom work daily with children on the autism spectrum. We are familiar with the obsessive way in which many autistic children become enamored of cartoon characters, treating these imaginary characters as best friends and retreating into their company at the first sign of stress. (I once had a 6-year-old patient who would not do anything until the Sponge Bob toy he carried with him did it first. For him, this toy was a dear friend who bravely ventured into dangerous territory to prove it was safe to do so.) This book helped us understand why so many children with ASD find it necessary to identify with these characters and gave us new insight into the ways popular culture can be used to open the doors to improved social and communication skills for our patients. (The author's child eventually learned to identify emotion in himself and others, and behave more socially, by comparing what he observed in the "real" world to the facial expressions and dialogue he had memorized -- literally -- in Disney films.)
This book is HEARTILY recommended to anyone who works with children on the autism spectrum and to readers who enjoy true stories of those who have met and overcome immense challenges. I also recommend it with some reservation to parents of autistic children. My reservation is this: The author's family is wealthy, educated, and well-connected. Though all of these resources were stretched to the maximum to provide for their child, they had the resources to stretch. My book club decided against recommending this book to the families we serve (in middle class, suburban Indiana) because no family in our years of experience could have afforded the kind of intense intervention this book describes (both from professionals and from a mother who did not need to contribute an income to the family coffer). However, some of the things provided to this child could be adapted for families of lesser means. (Though I would avoid recommending this book to families of truly limited means. I suspect it would only be discouraging.) This book is a solid 4.5 stars.
As a father to an autistic child (4 years old at the time of this review, she also has a diagnosis of CP) this book just wrecked me at my deepest levels. But ever since I first read the New York Times article summarizing this story (something I do not recommend you do if you are prone to cry and are at your place of work), I knew that this book would be this kind of story.
Suskind's focus is on how his autistic son, Owen, used Disney cartoons as a method to teach himself to talk and eventually socialize. One of the dangers of taking this kind of focus is to sell it as a type of "cure" or to make it a sort of "one size fits all" type of process. After reading the book and even during the book it is tempting to take this as a process that I could follow in my own home and teach my daughter to talk in the same way. I think Suskind does a good job of walking that line and never indicates that this is something that will work for everyone. That his child is unique in this and is an amazingly personal story of growth for his whole family.
One of the things I appreciate about this story is that it is not really about how amazing Disney is, but how amazing his son is for picking up on things and using them to build some very difficult skills for himself. The book I also take to be a love letter to his wife, who goes through some truly overwhelming ordeals and just leads the way in Owen's therapies and schooling.
My only real criticism of the book is that their life comes from a very very different perspective from my own and many of the special needs parents that I know. They spend an enormous amount of money on their child in therapies and private schooling, money that I cannot even imagine having access too. And I do not begrudge them their spending, I work hard to give my own daughter every opportunity that she may need. It is just hard to identify with them in these ways and is indicative of the extremely prohibitive costs concerning autism.
But seriously, near the end of the book Ron Suskind shares how he had had a couple dreams about Owen growing up and as a neurotypical adult that just destroyed me. I was just a sobbing mess.
I listened to the audio and happen to own the hardback version as well. The final chapter was Owen reading his story about the Sidekicks mentioned throughout the book. In the hardback book are his drawings also mentioned throughout the book. It was a wonderful way to end the story.
I believe there is a documentary that is in limited release right now and my family is excited to see more from the Suskind family.
I read this because I enjoyed the documentary with the same title. The story was inspiring, but the awkward writing made the book hard to get through.
The author's son, Owen, was "normal" until age three when autism struck. He lost his speech and most communication skills and withdrew into his own little world. The only activity he seemed to enjoy was watching Disney cartoons again and again, so the whole family (parents and Owen's older brother) would watch with him to spend time together.
Eventually Owen learned to communicate and relate to his family again using the Disney movies. Owen's parents realised what was happening when he started quoting lines to them, and the family started structuring their time with him through acting out the movies. They could join his internal world with theirs by singing Disney songs together and pretending to be movie characters. Owen even taught himself to read by studying the credits at the end of each movie.
Eventually Owen became a "Protektor of Sidekicks," using different Disney sidekicks (Sebastian from The Little Mermaid, Phil from Hercules, Merlin from The Sword in the Stone, etc.) to help him make decisions. After all, as Owen says, the sidekicks exist to help the hero fulfill his/her destiny. He also learned to draw and to create scenes that weren't in the movies but were perhaps implied.
I quite enjoyed the story and was rooting for Owen and his family the whole time. It would have been at least a four-star book except for the writing. Ron Suskind reminds us every few pages that he's a Pulitzer Prize-winning journalist and the author of several other books, so I don't feel bad about saying that the awkward sentences and non-standard punctuation detracted from the experience for me, to the point where it was frustrating to read the book. Every other paragraph had a sentence I would have to read several times to puzzle my way through, like: "If things worked out as we hoped, the need for this constant exchange of information would diminish, as Owen's ability grew, to deal productively and happily with people who may not know much about Disney movies; mixed results, there." Or "None we detect is our response." Or "A short passage of last thoughts, for literally the last three pages of the book, is due at noon."
I can recommend the documentary for those who are interested in the subject. As I write this it's available on Amazon Prime. I'd suggest watching the documentary first and then deciding whether it's worth it to read the book.
My advice for reading this book is that you have to read it as Owen's (the son) story. It is so hard to get wrapped up in the narrator's perspective as an adult dealing with the struggles of his child, instead of celebrating the joy of his life. Owen sounds like one amazing person. At the end of the book, there was so much name dropping, figure naming, and just general complaining it was sucking the joy out of the book and the accomplishment in Owen's life. Well it was certainly sucking the joy of reading for me. I skipped to the end and read Owen's story with is talented drawings, which was wonderful and insightful. Suskind wrote a work that won him the Pulitzer Prize about a young man who struggles from a life of poverty to get admitted to the college of his dream. Maybe he should look at the perspective of a child with autism from a middle class or lower income family and the struggles they have to face raising their child, without the financial ability to provide for a team of therapists, housing, private schools and camps. What about the autistic kids in the public school systems who only have a few teachers to help them? I echo the sentiments of my fellow reviewers. The laundry list of costs for various treatments and private education was hard to relate to as someone who works full time but would never be able to afford that for my child. It was a turn off and a bit insulting at some times. For something that was suppose to be inspirational, I found the negativity and woe often outweighed the positive praise and excitement. It was a joy to read about Owen's experiences, but that was sapped out of me when I read a complaint about an attitude, behavior or obstacle that sometimes sounded like whining on the parent's part. I don't have a child with a disorder so I won't claim I know personally the pain of raising a child with such unique needs. But I don't think I would be the person who would write about my complaints and woes for the world to see, or lament about how much money I spent (or couldn't spend) to raise my child for all the world to know. But that's just me.
At three years old, Owen Suskind was a happy talkative toddler. Then, seemingly overnight, he began to regress in multiple ways: he stopped talking, seemed to no longer understand language, began to lose motor skills, spent his time whirling & crying. Eventually, his terrified parents learned that he had autism. They were determined to help him any way they could. This is the story of the next 20 years, as they tried therapy after therapy, school after school.
Owen was captivated by Disney animated movies. His parents discovered that they could reach him through the movie dialog. While he could not carry on even a limited conversation, he could communicate by reciting lines from the movies. Some of his insights, as communicated through the movie dialog are incredible (deep enough that I have to wonder if they are "enhanced" by the author). Still, the idea that Owen could communicate through memorized dialog and that that skill could be used to teach him is fascinating and incredible.
I found the family's saga interesting and inspiring. Having worked with young people on the autism spectrum, some of whom had similar obsessions with cartoons, superheros, illustrating, I could recognize Owen as the complex real young man that he is. Unfortunately, the book was overly detailed and poorly edited, and the family's seemingly unlimited resources were too evident & off-putting.
This is one of the most beautiful stories I've ever experienced. I was literally taken to tears several times while listening to the audio book. It doesn't take long before you're loving this family and their son Owen. Ron and Cornelia don't just give up on their son, they work to figure out how to reach him. His brother, Walter, doesn't just flee from an embarrassing brother, he learns from him. And Owen might just be one of the most brilliant people you'll ever meet. His insights into Disney movies will take you deeper than you've ever thought to go. He sees them differently and, like his family, you'll find yourself learning from him.
I highly recommend the audio book version of this. Ron takes on the voices of the various Disney sidekicks they used to reach Owen. But the special gem comes at the very end where Owen himself narrates his beautiful tale of 12 sidekicks in search of their hero. It's a mirror at his life, the journey you've just experienced. This is one of the most important stories you'll ever experience. You'll come away with a different perspective about autism and the challenges those with it face. It can be a horrible, devastating experience, but in the end, it is SO rewarding.
I love that the Suskinds shared this story with the world, and I hope Owen's stories about sidekicks gets made into an animated movie (hand drawn, of course!). That's a movie I'd go see for sure.
This book was quite a pleasant surprise. We have a son who is on the autism spectrum. We think he's more verbal and expressive than Suskind's son. But a bit hard to tell from the book.
Fundamentally, really great to listen to the experience of someone who is a bit further ahead on the path with his son. A lot of very important lessons.
And very confirming that his experience was all around "there's a lot going on in there how do we discover it?". Far too much child rearing seems to be trying to "impose order" on kids - order which can impede their development.
But kids on the spectrum respond far worse to these outside-in methods. Suskind's family discovery of the inside out is really important to listen to and think about.
My only hesitation is that the stories are packaged. He's a great writer. And there were times when I wanted to hear the kid's comments (apart from the literal quotes) in a language which felt more "real" to me. Can't explain exactly what that would mean. But at times the quotes seemed a bit slick.
Regardless, this is an excellent book and I have already recommended it to several people.
I found this book captivating and appreciated the insight into the life of and interactions with a person with autism, from onset to adulthood. The biggest problem I had reading it was constantly being aware of the privilege in this family. This story could only be told by people with immense wealth and influence, which is certainly not the typical experience.
Wow! Just wow! That ending really got to me. As I was reading it I was moved and fascinated the process Owen, a boy on the autistic spectrum, used to grow so he could become all that he wanted to be. However, the very last story had me punching my fist in the air saying "go get 'em tiger!" with tears in my eyes. What a great kid/young adult who is so determined to beat all odds and has already shattered the limited expectations others placed on him. Owen's story is not over yet and I hope to continue to follow him as he strives to reach his dreams!
This is an incredible story of an autistic child, Owen, whose parents were given little hope of him ever being able to learn much or function in a normal society to any extent.
By watching Disney movies repeatedly and living through the characters, Owen begins to develop and start expressing himself on his own. Nothing his parents, doctors, or therapists did helped him move forward as much as his Disney heroes!
Over the years as he grows into a functioning young man, it becomes more astonishing to those around him how much Disney has impacted his development. As he is able to express himself more clearly, his family begins to understand this profound impact. They are astonished at what he has picked up on through animation, storylines, and characteristics discovered through Disney movies that contributed to his understanding of the world and what he desires for his future.
The book details the long journey the family traveled while working with Owen to help him become whatever he wanted to become. The father shares the struggles, as well as the beauty, of raising an autistic child. While they could have dismissed Owen's Disney fascination, or even tried to stop it so he wouldn't live in a fantasy world, this imagined world of Walt Disney is what helps Owen better understand the realities of life, gives him dreams, and gives him the drive to reach those dreams.
The understanding of the autism spectrum has changed so much since Owen was young. More resources are available and opportunities are opening up. The beauty of this book, written by the father, is the reality of raising an autistic child, while not classifying Owen as abnormal or sub-par. He is just different, and the father embraces those differences. It's clear how those differences are not necessarily drawbacks. Some of them are astounding.
Owen is just Owen. He was always just like any one of the other kids. He just wanted to do what they did. He still just wants to do what his peers do, but he has already done so much more.
Well written story that captures how a family connected with their autistic son by linking life lesson to his love for Disney stories and characters. I liked that Owen's story builds as his life unfolds and shows a complex understanding of events that he couldnt always vocalize, and that the book ends with Owen reading the story he developed. While the story had a lot of great optimistic messages... I would be lieing if I did mention that their description of the sudden onset of symptoms when Owen was about 3 has left me watching my almost 3 year old closer. I know all lives have their challenges and loved the passage about Walt wondering if he would be the same person if his brother hadn't had autism... But I am also grateful that this isn't our challenge.
As someone who dreams of helping kids on the spectrum and is also a major Disney fan-this book was AMAZING. It truly made me giggle and cry, but also put me in the shoes of the family members of an autistic child. So good, I can’t wait to use what I learned in this novel in my future speech language pathology practice.
I canNOT believe I made it all the way to the ripe old age of twenty-seven alongside a twenty-six-year-old autistic brother without having ever read a single book on autism. Do I feel the shame? Oh, you betcha…
I’m sitting at a desk behind my brother’s. It’s his twentieth or so foreign language lesson. The deal was I’d accompany him in the beginning only, mostly to help his teacher learn how to communicate with him and to help the two of them bridge the comprehension gap. I can tell my brother doesn’t always understand her instructions, but mostly sit back and observe how the two of them will solve those minor obstacles without my interference.
The truth is, I’m not needed here. I haven’t been needed since his second or third class. His teacher is young, only two years older than him, with a cheerful disposition and a smile you can see even behind her mask. The two of them share great rapport. She’s already used to working with him, even though she’s told me she doesn’t have any experience with special-needs students.
I’m not needed here, so I mostly sit behind him for an hour every Monday and Friday, reading, only every so often interrupting them if there’s something that needs to be clarified or some administrative business to be taken care of. I no longer even know why I keep coming. My brother certainly doesn’t need me there. Perhaps my needing to be there has nothing at all to do with him. Perhaps it’s my way of compensating, of trying to assure him everything’s still the same, even though I haven’t lived at home in over four months and am not on speaking terms with our parents. Perhaps I subconsciously see these Monday and Friday classes of his as a refuge for the two of us, a place where we’ll be unbothered, a place where I don’t run the risk of running into our parents, a biweekly ritual which usually ends with us taking a stroll, chatting or grabbing a meal.
I listen as he completes the exercises his teacher assigns him, everything from grammar and vocab to reading and listening skills. He’s good. He’s much better than I thought when I first signed him up for these classes. I want to keep listening to him so I can avoid or at least postpone the task I’ve given myself – reading Life, Animated. Because I know. I know I’ll be a sobbing mess before I’m even through the first chapter.
I came across this book when I stumbled upon the movie trailer. I’ve seen that trailer at least a dozen times so far and it’s always made me cry. That’s why I’ve avoided watching the movie. It’s there, on my computer, but I lack the guts to go through with it. On yet another watch-through of the trailer, my most recent one, I spotted something I hadn’t up until then – based on. So I logged into my reading app and downloaded this book, determined to read it before I watch the movie. Firstly because it offers more information than a roughly ninety-minute movie ever could and secondly because I’m ashamed I’ve yet to read an autism-related book, fictional or otherwise.
Ron and Cornelia Suskind have two sons, Walt and Owen. Owen is the younger one, the autistic one. Suskind gives us an overview of his and his wife’s lives up to Owen’s diagnosis. He speaks of their shock, their denial, their placing their faith in different methods, their concerns about neglecting their older son, their struggle to find the appropriate professionals, preschools and schools for Owen, in the process ticking all the boxes other parents of autistic kids also have to tick.
My brother’s autism was, according to our mother, apparent essentially from the day he was born. Well, something was apparent, even though nobody had a name for it back then. Much like Owen’s parents, what little mine knew about autism could be summed up in Dustin Hoffman’s performance as a savant in Rain Man. No, being a savant has as much to do with the character’s autism as it does with his eye colour. Please stop thinking every autistic person you encounter is automatically a genius, I’m sick of that myth. My brother’s early prognosis was anything but rosy – a long list of can nevers and would nevers. Luckily, he just keeps getting better and better, surprising all of us. That’s the more typical, progressive path of autism.
Then, there’s the other, far more insidious and heartbreaking form of autism – regressive autism. A child develops normally (I guess that word is triggering, so I’ll switch to typically) and then, all of a sudden, at the age of two or three, that autism takes over and becomes very much apparent. It’s frequently followed by partial or complete non-verbalism, what I assume must be the most heartrending aspect for most parents. That’s what happened to Owen.
We follow this family’s journey as they try to adjust to their new circumstances and find a way, any way, to reach Owen who has almost completely retreated to his inner world. Their days are typical of all parents with very young autistic kids – endless speech therapy, cognitive therapy, this therapy, that therapy, socialisation, all the while struggling with how to not let this disorder subsume them entirely.
One day, they experience a breakthrough of sorts, one that imbues them with some much needed encouragement. Owen starts repeating lines from the Disney movies he watches religiously. Doctors tell the Suskinds not to get their hopes up. It’s just echolalia they say, mindless repetition of sounds without any real comprehension.
We see what a strain autism puts on their family, how the older brother Walt, even at a very young age, longs to carve out an identity of his own, wholly unrelated to his brother, one that won’t always make people automatically see him as “that kid’s brother”. We see the burden of socialisation and public affairs, the stares, the tacit reproach in other parents’ eyes whenever they go out for a meal. We see how all-consuming the entire thing is, with most of the day-to-day responsibilities falling on the mother’s shoulders, not just with this particular family, but also in general. Luckily, the father here appreciates it and, as involved as he is, still recognises the mother’s role and how much she’s taken on herself. What I have at my (former) home, in contrast, is my ungrateful father who’s never really, truly, entirely accepted the fact his son is autistic, blaming my mother who’s sacrificed her life for her son’s needs for everything my brother hasn’t achieved, frequently feeding her lines such as “What have you ever done for him?”
We also see this family struggling with finding an appropriate school for Owen. We witness their heartbreak when watching other kids not socialise with him, even after months of exposure to his behaviour, something I’m keenly aware of when it comes to my brother and that invariably destroys me on the inside whenever I see it. Owen is first brought into an environment that favours inclusivity, but the other kids simply aren’t interested in playing with him, and it soon becomes apparent there’s no real socialisation going on there.
I began primary school back in the autumn of 2000, when inclusivity still hadn’t been introduced to mainstream schools. My brother’s diagnosis, as is the case with many other kids, constantly kept changing. One minute it was autism, then ADHD, then Asperger’s and so on and so forth. Needless to say, back in circa 1997, when he was two-years-old, the age when autism typically gets diagnosed, there just weren’t enough trained professionals to make a competent assessment, at least not in our neck of the woods.
Owing to this unfixity of who my brother was and what he indeed had, my parents tried to enrol him in the (then non-inclusive) school I attended when his time came, not because they wanted to pretend there wasn’t a problem there, but because they hoped exposure to regular kids would draw out the regular in him as well and overall prove beneficial for him.
Surprisingly, I remember both mine and my brother’s pre-enrolment assessment tests. Naturally, I was present for mine, but why I got dragged to my brother’s when I was only nine at the time I don’t know. Probably because I was too young to be left home alone and there was no one available to babysit me for the day. Anyway, I remember when my school counsellors and pedagogists told my mum my brother would simply not to be able to attend their school. I remember her tears and the way her shoulders shook and how my brother kept babbling to himself in the corner. From what I remember, they couldn’t even get him to sit still in a chair. This rejection was especially difficult because he had also previously been denied a place in the kindergarten I attended. He was only eight at the time and had already had so many doors slammed in his face. Thankfully, my parents did later find him an appropriate school for special-needs kids. After a suspenseful testing for Owen, his parents did too.
Owen’s parents discover that his love of and obsession with Disney movies isn’t just a giant waste of time or a pointless escapism mechanism. Owen actually uses them as a filter, a tool that helps him make sense of our world. Ron addresses him using the puppet and the voice of Aladdin’s Iago and Owen answers not as another character from the movie, but as himself, admitting that he’s lonely. This breakthrough initiates a ritual of sorts in the Suskind household, with the family watching Disney movies together in the basement and using the characters’ interactions to try to engage and get through to Owen.
The good times, unfortunately, don’t last. Owen isn’t making too much tangible progress in the academic field and his school decides it’s no longer the place for him. The Suskinds enrol him back in his former school. To them, and Owen who seems to understand the underlying connotations of the school’s decision, this feels like a giant step backward.
Fortunately, Owen does achieve a string of victories that are more intangible, the ones invisible to a society obsessed with winning and palpable success. He starts drawing, stages plays based on his favourite Disney narratives and begins devoting more and more attention to the movies’ sidekicks, identifying as one of them, one of life’s side characters who don’t receive enough exposure or appreciation, fashioning himself “the protector of sidekicks”.
Realising Owen isn’t making any progress at his school, much less in the social interaction field, Cornelia decides to take matters into her own hands. She enlists the help of Owen’s team of therapists and asks them for advice or for recommendations on good schools. They suggest she take the road many parents of special-needs kids are forced to resort to – homeschooling. In a series of breathtaking moments following their suggestion, Ron describes in perfect terms just how Cornelia feels and how this affects her personally.
Mothers really are the unsung heroes of autism, but they are also usually autism’s greatest victims, the ones who spend the most time with their kid, the ones who lose themselves in their kid. Their careers, hobbies, personal interests and relationships, even their separate identities, fall by the wayside, each segment gradually sacrificed more or less willingly. But homeschooling entails a whole different level of commitment and dedication, one I hope other people are able to appreciate. Cornelia, like so many parents before her, takes up the challenge, and sets up a customised school just for Owen, his team of experts there as well to help him learn how to process his vast knowledge of Disney in order to acquire academic knowledge. The Suskinds’ ultimate goal is to prepare Owen for a high school that seems perfect for him. After a few trial days, Owen does get accepted.
My own mother has been asked to make tremendous sacrifices for my brother as well. Her mistake, the one scores of parents seem to make, whether their kid has special needs or not, was to give herself over so completely that now, there’s no way to describe my mother other than as incomplete. Incomplete in essentially every way a person can be considered that. She has no life of her own – no career, no interests, no hobbies, no specific needs or wants, no drive and no desire left. By having allowed my brother’s autism to subsume her so wholly, she barely has any personality of her own, any discernable, separate identity unrelated to him.
The difference between my family and Owen’s, aside from the fact his parents don’t let autism do that to them, is that their sacrifices, Cornelia’s particularly, are valued and appreciated. My mother’s aren’t. What’s more, they aren’t even noticed. Nobody ever asked her anything, it was simply assumed she would do everything that needed to be done and then some. Her utter devotion always went without saying, always taken for granted, seldom mentioned, much less appreciated. So many things I wish I was old enough to get at the time, old enough to prevent or change.
Anyway, Owen is now a teenager, entering high school, his older brother Walt already an undergrad. Life changes with high school. It offers so many new opportunities, but also comes with a unique set of challenges. And so, we come to the bullying.
Two boys in Owen’s class start threatening him. They tell him they know where he lives and who his parents are. If he tells them about getting bullied, they will burn his house down. Owen, understandably, takes their threats quite literally. He retreats into himself, becomes very withdrawn and fearful and it isn’t until the following year that he reveals what’s been happening to him. Thankfully, the school deals with his bullies swiftly and efficiently, expelling them.
My own brother suffered a similar situation in high school. His classmate was always on his case, not so much classic bullying in the way we traditionally tend to think of it, but it was becoming a nuisance. The other boy was jealous of my brother to a degree I have never witnessed before or since and that envy manifested itself in various ways, through constant pestering, putting down, fault-finding and general harassing. Based on these two cases, as well as thousands of others out there, all I can say is – do not for one second believe that old myth that people with special needs are not capable of being the bullies themselves.
This experience is an extremely bitter one, both for the one being bullied and those who love him. It triggers and brings to surface once again that fear that comes with being unable (powerless, helpless, useless) to protect them when they need you to the most.
Luckily, to Owen, high school represents more than just bitter experiences and bullying. There are also friends, new challenges to rise to and the inevitable maturation that comes with it. Owen finds two likeminded friends and, together, the trio forms a club of sorts known as the Movie Gods. They’re all huge film aficionados and the magic of cinema helps them reach out to one another and facilitates conversation.
Owen’s experience with being bullied leads to a regression of sorts. Now that he’s seen the wider world and a glimpse of its brutality, he wants nothing to do with it, quickly shutting down all things adult. His parents help him work through this, by once again urging him to embody his beloved sidekicks, this time, of the wiser, older, gentler sort (Rafiki, Merlin, Jiminy Cricket, etc.), as he uses them to essentially help teach them how to guide him. Owen, however, takes it a step further, by improvising lines he feels they would use to comfort him. He once again takes the existing and fashions it into something new, something better, more customisable and fitting.
Whereas previously Owen clung firmly to either Disney movies in particular or children’s movies in general, he now steps out of his comfort zone and decides to test new waters with The Dark Knight, a decidedly bleaker type of movie he never used to be interested in. Ron watches it with him, carefully observing Owen’s reaction. This “graduation” from kid-friendly movies is both auspicious and frightening to those around him, which again brings me to that fear those of us connected to an autistic person always carry around. You want them to mature and grow up. You want them to be as independent, self-sufficient and fulfilled as they can be. Yet, you can still see the remnants of the kid in them, that gullible, easily-tricked person inside. You often run the risk of infantilising them, something I’ve noticed my parents are particularly guilty of.
At this point, I take a step back from the text. I’m overwhelmed. I have to take a step back as I realise I’m amazed by just how much work and effort Owen’s parents still continue to put into his progress. I’m bombarded by memories of my own parents who largely left us to figure things out on our own and solve our problems independently, even when we were too young to comprehend them at times and begged for help and guidance. I find myself disgusted, justifiably or otherwise, by how little they worked on my brother’s progress, how little they prepared him for the outside world, compared to Owen’s.
Sure, I’m only the sibling, I can’t know what it’s like for actual parents. Sure, Owen’s and my brother’s type of autism can’t compare, functionality-wise. Still, our parents largely stopped “working on him” by the time he hit his teens, a realisation which leaves me both disappointed and enraged. Am I in the right here? Should a non-parent have the right to judge parents without having lived through that experience? I’m not sure. My mother had given a lot, but it’s been over ten years since her well tapped out and there’s been nothing since. My father… I can’t even go there.
Walt has become a counsellor at a summer camp and is taking on the role of a mentor to a young boy with two autistic brothers, which just goes to show how much this experience has imbued him with a greater sense of empathy, wisdom and matu...
How a family rallies around their boy Owen who loses his speech as a toddler is such an uplifting story. They discover that the way "in" to Owen is through Disney movies. They begin to recite lines from Disney movies, dress up as Disney characters, and relate to Owen about his feelings (and dealing with life) through examining Disney films. This is a very moving story. There are everyday miracles and there is a place for everyone. We need to respect imaginations and seek answers. We need to work hard at helping everyone to reach their potential. *I listened to Ron & Owen read the audio book. Great!
I rated it based on my heart. Yes, it's a well-crafted story with unique insight. I read it as a mother and as an educator. When I take my heart out of it, I think that it could have been a bit shorter and been just as effective. Turnoffs? Whenever bits of the author's political leanings crept in.