|tags:||Memoir & Essay|
MY SON HENRY, who is six and has Down syndrome, has been a fan of the Muppets for most of his life. When we let him, he’ll watch Muppet Show DVDs for hours at a time. He can recite entire sketches word for word and likes to ask for favorite episodes by the name of the guest star. “I want Vincent Price!” he’ll call out. Or, “Rita Moreno tonight!” The Muppets might seem like a strange passion for a kindergartener. They can be talky, violent, and mean, and Henry’s teachers haven’t always approved. They blame the Muppets for making him distracted and teaching him bad habits. We’re often asked to direct Henry toward more wholesome viewing, and to have him leave his stuffed Kermit and Fozzie Bear at home.
Ron Suskind offers a different wisdom in his memoir, Life, Animated: A Story of Sidekicks, Heroes, and Autism. Suskind’s younger son, Owen, diagnosed with autism as a toddler and now in his early 20s, has had a lifelong obsession with Disney characters. Suskind and his wife, Cornelia, were also discouraged from allowing Owen to indulge his passion, which teachers and therapists saw as an unhealthy escape from real-life social interactions. Their more cynical friends criticized Disney for being anodyne and corporate. But Owen’s parents believed Disney characters were an avenue to reaching their son. Instead of limiting Owen’s exposure to Disney, the Suskinds encouraged it. They sought out specialists who supported their sense that animated characters could help Owen develop self-awareness and the ability to understand and engage in social interaction.
Until sometime in his third year of life, Owen Suskind was a joyful, energetic, and entirely typical child. A home movie shows the two-and-a-half-year-old toddler running through a leafy yard, chased by his father. “It’s a last sighting of him,” Suskind writes poignantly, “captured mercilessly and forever on the magnetic tape.” Soon after making the video the Suskinds moved to Washington, DC, where Owen began to cry for no reason, stare off into space, and speak less and less. Doctors identified his condition as Pervasive Developmental Disorder (PDD), or “autistic-like behaviors.” Desperate to help their son, the Suskinds confronted a bewildering array of expert advice, treating Owen to an intensive and costly regimen of therapies while struggling to find schools that would understand and nurture him.
The only time Owen seems calm and relaxed is while he’s watching Disney videos. One afternoon, there is a breakthrough. The entire family is watching The Little Mermaid when they make an exciting discovery: the seemingly meaningless phrase Owen has been muttering for the past few weeks, which sounds to them like “juicervose,” is actually a stanza from the film’s last song, “just your voice.” Some of Owen’s therapists dismiss his vocalizations as echolalia, an autistic tendency to repeat sounds without understanding. But the Suskinds are convinced that Owen’s words represent a genuine effort at communication. Soon after the “juicervose” episode the family visits Disney World, where Owen is transformed. Surrounded by beloved characters and themes, he is more focused and receptive than he has been since the onset of his symptoms. The Suskinds become convinced that Disney may be the key to recovering their son’s ability to express himself.
Many parental memoirs cover a relatively narrow swath of a child’s life, but Life, Animated follows Owen’s development from toddler to early adulthood. Disney is a constant, centering presence. When Owen is counseled out of the school that had promised to embrace him, Cornelia dedicates herself to homeschooling, developing a curriculum around Disney characters. When Owen is traumatized by bullies at his new high school, Disney characters give him the courage to tell his parents and restore his confidence. Disney becomes a fulcrum for Owen’s first friendships, his relationship with extended family, and eventually his first love.
Owen especially identifies with characters like Jiminy Cricket from Pinocchio, Sebastian the crab from The Little Mermaid, and Timothy Mouse from Dumbo. These are the sidekicks, who are there to counsel the hero through the obstacles he or she confronts on his or her journey. Who roots for characters in the margins of somebody else’s struggles and triumphs? Where do the sidekicks go once the protagonist’s mission is accomplished? “I Am The Protekter Of Sidekicks,” Owen scrawls on a pad he has filled with Disney drawings. A talented illustrator, Owen dreams of producing a movie starring the sidekicks, which would also recover the art of hand-drawn animation that is being lost to computers. Where Life, Animated begins with Owen losing his capacity for speech, it ends with his voice: his illustrated story of Disney sidekicks who come together to discover their own “inner heroes.” A testament to how far Owen has come, this chapter makes him a collaborator in telling the story of his own life.
Much as this is a book about Owen’s development, Life, Animated is also a story about the growth of his family. Owen’s diagnosis comes as a crushing blow. Initially, Ron and Cornelia take comfort in the doctor who describes their son’s symptoms as “delays,” a term that suggests the “real” Owen — a typical boy much like his older brother — will eventually emerge from inside the child their son has become. “We will save this boy,” Suskind writes, recalling their crusading spirit in those early years. “Rebuild him — rebirth him! — every waking hour of every day.” With time, they come to understand Owen’s condition as an inseparable aspect of his identity and to appreciate how seeming deficiencies can also be virtues. The couple moves toward “a gradual acceptance, across years, that Owen is different, not diminished,” Suskind writes. “It has affirmed for me and Cornelia the conviction that Owen, and so many folks like him, are, in essence, exactly like the rest of us, only more so and less so.” From this understanding, the Suskinds conclude, “showing how affinity reveals underlying capability may, if properly presented, lead to a reappraisal of possibility.” Suskind insists that the lessons of Owen’s journey are not limited to Disney. His is just one example of how the passions of people with autism can be nurtured in ways that enable them to develop their full capacities.
Suskind writes frankly about the vast expense of raising a child like Owen, estimating an annual cost of $90,000. To put this in perspective, according to the Centers for Disease Control and Autism Action Partnership, the national average is upwards of $40,000-$60,000 for treatment and therapy. The Suskinds are not your average American family, however. Ron’s stature as a Pulitzer Prize–winning author opens doors to exclusive schools and social connections. They can afford private therapy, numerous trips to Disney World, a dedicated counselor for Owen at sleep-away camp, and private-school tuitions for their two sons, even as Cornelia devotes herself full-time to parenting and educating Owen. Suskind — whose bestselling book A Hope in the Unseen follows a disadvantaged inner-city student’s journey from high school through his first, difficult year at Brown University — is well aware of the privileges conferred by his fortunate circumstances. His story underscores the fact that autism can affect any child, regardless of how affluent or well-positioned his parents.
If autism is evenly distributed across the social spectrum, it is certainly no equalizer of family experience. Just as the capacities of people on the autism spectrum vary greatly, so do the financial resources available to support them. Having money and access to adequate education, specialized therapy, and respite care can make all the difference in parenting a child with autism. While Life, Animated makes no bones about the enormous cost of autism, it gives only glancing mention of the state-funded programs that help families less well-endowed than the Suskinds. Just before Owen was born, the Individuals with Disabilities Education Act (IDEA) was signed into law, entitling all children with disabilities to a “free and appropriate public education.” Despite its many imperfections, the IDEA has democratized access to education, making services and supports available to children across the economic and social spectrum. The successes and failures of this landmark legislation are one of the great, under-recognized stories of our time. In 2004, the IDEA was amended to include Early Intervention services for all children with disabilities ages 0-3, regardless of family income.
Suskind holds up his vision of affinity therapy — which would enable people with autism by working with their passions and talents — as an alternative to “federal support that runs approximately $50 billion a year in 2010, and is sure to rise exponentially.” But the agenda here is vague. Would such a program be paid for by the state as a substitute for other, less promising ways of educating students with autism? Or does he imagine it would be privately funded, which would almost certainly put less privileged kids at a disadvantage? Suskind could strengthen his case for affinity-based education by being clearer about whom it would serve and where it would fit into already existing state-sponsored programs.
As represented in Life, Animated, the Suskinds can sometimes seem like characters out of a Disney movie. Ron plays the part of hardworking, dedicated husband; Cornelia is the self-sacrificing, resourceful stay-at-home wife; and Walt is a remarkably caring and supportive older brother whose worst adolescent crime was that he once threw a party while his parents were out of town. Suskind unglamorously compares his marriage to a favorite couch, “a high-quality product, holding up quite nicely after twenty-five years. We are, too. There’ve been stresses galore that have come to rest on this marriage […]. But the battles, if anything, have strengthened our bond.” Sometimes, the nearly perfect harmony of the Suskinds’ family life can feel a bit too pat. Where the book describes Owen’s “Disney therapy” in exhaustive detail, marital tensions are so quickly skirted that they might escape notice, as in the following rather dispassionate account of what Suskind calls “The Sacrifice Games”:
Its difficult for both to sacrifice simultaneously — so there are strategic issues, of move and countermove. No prize money attached. But the deification points are redeemable for periodic gifts and regular trips to the moral high ground. Cornelia generally crushes me here, but I’m making a run with the office.
Marital stress, an inevitable aspect of all parenting, is exacerbated by raising a child with disabilities. “Though divorce rates are no higher than the norm,” Suskind reports, “families tend to either break apart or pull more tightly together.” For most, the options aren’t so clear-cut. Life, Animated could thicken its portrait of domestic life by illuminating the messier and murkier places — between breaking apart or pulling tightly together — that families with a disabled child often inhabit.
Much as Ron, Cornelia, and Walt have a better-than-life Disney quality, Life, Animated does not have a Disney ending. A virtue of Suskind’s book is that it resists neatly tying up loose ends. Although Owen dreams of becoming a Disney animator, his first job is bagging groceries at a local Giant Foods supermarket. Of his son’s marginality in a world organized around ambition, drive, and productivity, Suskind writes: “He doesn’t register in their meritocracy. A nonperson.” Although Owen goes to a post–high school program, Suskind observes the absence of “earned rewards and bright futures” associated with the traditional college experience. The staff report that he continues to struggle with loneliness and social alienation, and Ron and Cornelia worry about what he’ll do after graduation. And although Owen finds love, it is evident he will require ongoing support to maintain his relationship. As Suskind makes clear, these are struggles and setbacks shared by many people with autism and their families.
Toward the conclusion of Life, Animated, Suskind talks to Owen about the importance of taking risks, even when we know our relationships may not last forever. “You have to live in the world,” he tells his son. In this way he leaves the story open-ended, and suggests that life, animated or not, and with inevitable victories and tragedies still to come, will continue to unfold.