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Life Animated: A Story of Sidekicks, Heroes, and Autism

Tuesday, December 9, 2014   (0 Comments)
Posted by: Sarah Stewart
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By Ron Suskind

Reviewed by Sarah Stewart 
{Headlines} August 2014

There is a boy who is like other boys. He is happy and playing with a mom and a dad, an older brother, and friends. Until one night he sees from his window a storm on the horizon…he calls for his parents and hears nothing…and runs out into the night and gets lost…He crosses a bridge that collapses. There’s no way he can get home.” – from Sidekicks by Owen Suskind

In his recent memoir Life, Animated: A Story of Sidekicks, Heroes, and Autism Ron Suskind chronicles his family’s journey and his son’s battle with autism spectrum disorder (ASD). Ron is a Pulitzer Prize-winning journalist and best-selling author of numerous books on national affairs. His memoir gives a glimpse into the many difficulties faced by families and children with developmental disorders, the roller coaster of both progress and emotions in dealing with the diagnosis and finding treatments, and the emergence of a new form of therapy. 

Life Animated opens in the early 1990s. Ron and his wife, Cornelia, were both journalists, living in Boston, eager to change the world by day and enjoy the simple pleasures of raising a family by night. They have two boys Walter or Walt, 5, and Owen, 3. Ron had accepted the prestigious position of senior national affairs reporter at the Wall Street Journal in Washington D.C. Life seemed blissfully promising; their various goals and aspirations were falling neatly in place. But in 1993 shortly after the move, their world changed. Ron writes that “almost overnight” Owen’s language, social, cognitive, and motor skills collapsed. He is abruptly cut off from them; easily frustrated, crying often, and unable to communicate his needs, sleep, cope, or care for himself. His vocabulary of around 200 words shrinks to one word: juice. Their pediatrician refers them to a specialist, where they receive a frightening diagnosis: autism.   

Like many disorders, autism evokes some common stereotypes, and it did for the Suskinds. They both thought of the famous 1980s movie Rain Man, and Dustin Hoffman’s epic portrayal of its autistic character Raymond Babbitt. According to The American Psychiatric Association, ASD is a severe developmental disability that appears in the first three years of a child’s life, and involves “impairments in social interaction – such as being aware of others' feelings – and verbal and non-verbal communication.” Also, those diagnosed with ASD tend to have “limited interests, strange eating or sleeping behaviors, or a tendency to do things to hurt themselves, such as banging their heads or biting their hands.” The exact cause of ASD is unknown and the severity of the condition falls on a broad spectrum, requiring its treatment to be highly individualized. 

“Early intervention is critical.” This is the ominous and constant phrase the Suskinds hear from each expert, and so they urgently begin researching therapies and treatments to help Owen. Individuals with ASD are treated with a combination of behavior and communication approaches, medications, dietary approaches, and alternative medicines. In the 1990s, the most prominent behavior and communication approaches were Applied Behavior Analysis (ABA) and Developmental, Individual Differences, Relationship-Based Approach (DIR; also called “Floortime”). The two approaches are almost polar opposites. ABA is a strict conditioning method that rewards desired behaviors, and punishes (sometimes harshly), unwanted behaviors - a difficult therapy for a parent to watch or want. Meanwhile in Floortime, the therapist follows the child around, mimicking and showing great interest in everything he or shes does. This is an arduous, intense effort to draw the child out. The Suskinds decide to try Floortime. 

The Suskinds’ lives, and in particular Ron’s wife Cornelia’s life, quickly became dominated by transporting Owen to and from appointments or treatments with different doctors or specialists. When he’s four years old, they also enroll him in two preschools: The Ivymount School, an independent school for children with special needs, and a local preschool for traditional students that accepts a handful of special needs kids, the National Child Research Center. This latter environment models “inclusion,” an approach for special needs kids that has gained greater support in recent years. Some studies have found that special needs students benefit from being taught in a traditional classroom setting due to interactions with a range of other students, as opposed to only special needs children, and learning to cope with a more “real world” environment. The Suskinds had hopes such an effect would occur, but Owen remains in his shell, seemingly unreachable. 

But something else is reaching him. Owen loves Disney movies and will sit transfixed and engaged for hours watching Dumbo, Snow White and The Seven Dwarfs, The Sword and the Stone, and other classics. The family has found something they can do with Owen. Increasingly he watches the movies and then rewinds to certain parts. Then one day they experience a breakthrough in Owen’s language skills. He had one word “juice,” but lately had been repeating what sounds like “juicervose, juicervose.” While watching The Little Mermaid as a family, it comes to the part where the villain Ursula sings “Poor Unfortunate Souls.” As the song ends, Owen grabs the remote and rewinds it to the part, “I’m a very busy woman and I haven’t got all day! It won’t cost much, just your voice!” He then looks directly at his mother and repeats “juicervose!” and she realizes he’s saying “Just her voice!” Owen can talk! The family erupts in celebration. It’s a breakthrough, and a phrase that mirrors Owen’s own experience; the mermaid lost her voice in a period of transformation, just like Owen lost his. 

The experts are quick to temper the family’s hopes, citing that all children with autism develop fixations, and the interest in Disney was simply that. Therapists said Owen was likely parroting sounds he didn’t understand. However, the next breakthrough came at Walt’s 9th birthday. After saying goodbye to some friends, Walt becomes weepy. Owen, then 6, walks up to his parents and says clearly: “Walter doesn’t want to grow up, like Mowgli or Peter Pan.” It’s his first complex, reflective sentence ever. Later Ron is putting Owen to bed, and has the idea to talk to him through a puppet in the voice of Iago, the evil parrot from Aladdin. Mimicking the actor Gilbert Gottfried, Ron begins:

Ron: “So Owen how ya’ doing…I mean, how does it feel to be you?”
Owen: “I’m not happy. I don’t have friends. I can’t understand what people say.”
Ron: “So, Owen when did yooooou and I become such good friends?”
Owen: “When I started watching Aladdin all the time. You made me laugh so much. You’re so funny.”
Ron: “Funny? Okay, Owen, like when I say…um…so, so you marry the princess and you become the chump husband?”
Owen: “I loooove the way your fowl little mind works.”

The author later reflects: “I have not heard this voice, natural and easy, with traditional rhythm of common speech, since he was two. I’m talking to my son for the first time in five years….or Iago is.”

The Suskinds use Disney increasingly to connect with Owen, while he also uses dialogs and characters from Disney movies to express his emotions, and cope with life. At times, his choices reveal his inner turmoil: his frustrations with his disability, his hurt over rejection, his fear of the unknown. All Disney movies have heroes, villains, and sidekicks. In his life, Owen says his older brother, Walt, is the hero. Walt is popular in school, a strong student, and an excellent athlete. He goes to camp, plays football, and goes to college. Meanwhile Owen says he is a sidekick, a supporting character and not as important, but someone who helps others overcome obstacles and succeed. 

Owen attends numerous schools and camps over the years and his success or failure weigh heavily on both he and his family. But Disney provides an outlet. Feeling rejected after he is forced to leave his elementary school in 5th grade, he retreats to his basement, and declares himself the “Protecktor of Sidekicks.” When he is expelled from art camp, he sings defiantly and optimistically a song from Home on the Range about overcoming obstacles and sticking together. 

The Suskinds have made progress privately, but have a breakthrough in 2005 when Owen’s psychologist, Dr. Dan Griffin, decides to formalize the strategy. For years, Owen’s teachers have discouraged his fixation on Disney, but Griffin designs a therapy for Owen, which he calls “Educating Zazu.” Zazu is the hornbill sidekick in The Lion King who both Griffin and Owen agree has a lot to learn. Griffin drafts ten skills Owen must teach Zazu such as life in the world, how to communicate, how to concentrate, and how to follow directions. Owen agrees to the challenge and the strategy works wonderfully over the next year. Cornelia has been homeschooling Owen, and eventually he progresses enough to enter The Katherine Thomas School in Rockville, MD, for high school. 

Owen thrives in high school and makes his first friends, two boys who also love Disney, and other movies, and they call themselves “The Movie Gods.” His academic test scores are still somewhat low, but his creative and artistic skills are exceptional, and his ability to function socially continues to develop. In his sophomore year, Owen suddenly becomes increasingly erratic, frantic, closed-off, and then violent at school. Puzzled, his parents search for an answer, and eventually discover two boys at the school had been bullying Owen with vicious threats. The boys are expelled, but Owen struggles to cope with the trauma, and develops symptoms of obsessive-compulsive disorder, repeating the threats over and over. A specialist recommends Exposure Response Therapy, so the family begins watching Batman movies, and Ron takes Owen to the movie The Dark Knight. The therapy works, Owen’s symptoms improve, and he continues to grow and eventually graduates.

As the book comes to a close, it shows the success of the Suskind family and how in many ways Owen has become their hero. Ron says at one point in the book that families with autistic children typically break apart from the stress, or become much closer. The Suskind family has had the latter outcome. Owen is in college, living independently. He has a girlfriend, a group of friends, and a supportive community. He has ambitions to become an animator for Disney and a dream to revive hand-drawn animation. He has created a Disney Club where he and his friends watch movies, and discuss their feelings and the various social situations. 

The Suskinds’ story has also led to an ongoing conversation about affinity-based therapy. Researchers from Yale University, University of Cambridge, and Massachusetts Institute of Technology have written a proposal for a 16-week study using affinity-based therapy to reinforce social development in autistic children. Also, due to the number of responses the Suskinds received from autistic families who use a similar approach, they started the Autism Affinities Project to share and highlight various case studies. 

“The hypothesis they have put forward is sound, and absolutely worth studying,” says Sally J. Rogers, a professor of psychiatry at the UC Davis MIND Institute, in a New York Times article published April 7, 2014. “If you think about these animated characters, they’re strong visual stimuli; the emotions of the characters are exaggerated, those eyebrows and the big eyes, the music accompanying the expressions. Watching those characters is the way many of us learned scripts that are appropriate in social situations.” 

Experts say the need for more programs to treat children with ASD is real. The number of people diagnosed with autism has grown dramatically since the 1980s, partly due to changes in diagnostic practice. As of March 2014, the Centers for Disease Control and Prevention reported that 1 in 68 children fall on the autism spectrum, a 30 percent increase from 2013. Also from the CDC, boys are five times more likely to be diagnosed than girls, white children are more likely to be diagnosed than black or Hispanic children, and the average IQ of those affected has increased. 

Programs for children with ASD vary from what is offered in the public school setting, to independent schools focused only on children with ASD, to schools serving students with a range of learning disabilities. There are more than 35 schools within SAIS that serve students across the LD spectrum. Also many parents of children diagnosed with ASD choose to homeschool their children, as the Suskinds did for a time, or work with a group of therapists. 

Experts say that any school working with this population must plan for their incredible social and emotional needs. Amy O’Dell is the founder and head of Jacob’s Ladder Neurodevelopment School and Therapy Center in Roswell, GA. O’Dell started Jacob’s Ladder after successfully treating her son with various therapies based on concepts of neuroplasticity. The approach, which is increasingly supported by research, is similar to therapies used for victims of stroke or brain injury. 

O’Dell says she's seen a growing population of high-functioning, teen boys who have been harmed by inclusion programs and come to her school lost and angry. “Children who are high functioning on the spectrum of ASD desperately want friends and community and to belong and it’s very difficult for them to do that successfully,” she said. “What is needed is very specific and their challenges are specific…if those supports aren’t there and you just do inclusion, you can feed their internal conversation that they cannot be successful and they do not belong. Then they often can become angry and want to give up.”

O’Dell has been working on putting together a comprehensive education program for this group, and says she’s seen that when they have belonging and community and they learn to regulate the pain they go through – there’s hope. 

“As a society and as educators we are being called to pay attention and to have some very difficult conversations,” said O’Dell. “Because this is not going away and in fact the numbers are rising and the need is rising…there is great emotional turmoil for these students who cannot find belonging, and there are usually very unwanted consequences when you have someone living with that much loneliness and lack of belonging. They have two choices – they turn against themselves or other people, and it doesn’t have to be that way if we really pay attention.”

Lifelong educator Jacque Digieso says the key to reaching any student is building relationships in a calm and supportive environment, and in general, meeting them where they are. Digieso is the co-founder and executive director of The Cottage School, a special education school also located in Roswell and soon to celebrate its 30th anniversary. 

“As educators, we lose our way when we start where the child is supposed to be, instead of where they are,” she said. “We all function the best we can based on our past experiences and our expectations for the future. If we are afraid or ashamed, that’s a bigger handicap than any neurological disability ever could be. If a kid is struggling in a subject or skill set, we have to meet them there … and we find that because we are not pounding them with unrealistic expectations, they are able to get over that hump and do amazing things."

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