A look at some recent books about autism and the people who write them

Recently while perusing the site LibraryThing, I saw someone had tagged my novel The Very Ordered Existence of Merilee Marvelous (Greenwillow, 2007) as the “current cool disability.” My book, loosely based on a loved one and set in my beloved Texas, took more than five years to write and publish. At the time I started it, Mark Haddon’s The Curious Incident of the Dog in the Night-Time (Doubleday, 2003), written from the viewpoint of an autistic character, had not been published, and I was sure I was entering new ground with my manuscript. I certainly had not jumped on a literary bandwagon and I suspect no other authors had, either. I stayed away from reading other books during the writing and publishing process of VOE, but after finding the LibraryThing tag, I became curious and set out to read some recent and upcoming novels with autistic characters. What I found were some richly textured works with highly unusual voices, individuals trying to cope and navigate their worlds in unusual ways, and, most surprisingly, characters who possessed sharp insights into human nature and who had much to teach us. And their authors had heartfelt and personal reasons for sharing their stories.

Cynthia Lord’s heartwarming and humorous Rules (Scholastic, 2006), told from the viewpoint of 12-year-old Catherine, is the story of a sister coming to terms with her autistic brother, David, and the “rules” she sets for him, like “no toys in the fish tank” and “keep your pants on in public.” A Newbery Honor Book and winner of the Schneider Family Book Award, as well as many state awards, Rules is loosely based on Lord’s now 19-year-old daughter and her 17-year-old son, who is on the autism spectrum. “It was the sibling’s story that I most wanted to tell. I’ve watched my daughter grow up straddling two different worlds. In one world, she navigated the challenges and joys of having a brother with autism and in another, she just wanted to be her own person. It was my daughter’s experiences that drew me to the story,” says Lord. “It’s a big honor to be trusted with a child’s true feelings. Some of the most heartfelt, beautiful letters I receive are from siblings of children with disabilities. They often read the book and then asked their parents to read it, too, so they can talk about it. One mom told me her child handed Rules to her and said, 'Because I want you to know how I feel.’” In a time of more awareness of autism in the population, Lord hopes that by reading Rules and getting to know David, “readers will feel less fearful and more understanding of people with autism. One great thing about book characters is that we can talk freely about them. With real people, we worry so much about their feelings and ourselves being judged. Those worries keep us silent sometimes, instead of talking; we writers write about the things that matter to us–and having a person with autism in your life matters greatly.”

In Nora Raleigh Baskin’s Anything but Typical (S & S, 2009), readers meet Jason Blake, who, on the first page, tells them in halting, spare sentences, “Most people like to talk in their own language. I will try to tell my story in their language, in your language.” Jason, a boy with autistic spectrum disorder (ASD), is unable to communicate freely with people, but finds his true voice in writing stories on the computer on a Web site called Storyboard. “When I write, I can be heard. And known. But nobody has to look at me. Nobody has to see me at all,” Jason says. Baskin explains, “I knew before I started writing this book that autism is NOT a lack of emotion, but rather a difficulty in giving and receiving emotion/connectiveness that in no way diminishes intensity but may, in fact, increase it so much that it becomes unbearable. I have real-lived experience and incredible compassion for this concept.” After meeting a girl named Phoenixbird on Storyboard, Jason begins to write a story about Bennu, a dwarf who ultimately must decide between being “cured” or staying as he is, a story that echoes the struggles Jason has in accepting his disability and navigating his world. “As Bennu finds acceptance for his 'handicap,’ so does Jason,” continues Baskin. “When I was in middle school I wrote stories all the time, which only upon re-reading as an adult do I realize were truly fictionalized autobiography. I was using 'story’ as a way of making sense, or expressing confusion and pain in my 'real’ life. And it worked. Writing is an empowerment. There is no question about that.”

“The term 'cognitive disorder’ implies that there is something wrong with the way I think or with the way I perceive reality. I perceive reality just fine. Sometimes I perceive more of a reality than others,” Marcelo Sandoval explains to readers, near the beginning of Francisco X. Stork’s Marcelo in The Real World (Scholastic, 2009). “Marcelo has a childlike sensitivity, a capacity for awe and for questioning, that we probably all had as children but lost as we grew up,” Stork, who worked with kids on the autism spectrum in college, explains. “There is a kind of purity and 'ego-lessness’ about Marcelo that I wanted to capture. Marcelo is also a keen observer, more of a witness than a doer. He lacks a distance between him and the outside world.” The teen, who has Asperger’s Syndrome, attends Patterson, a school for kids with special needs, where he tends to ponies. “Patterson is where Marcelo belongs,” he tells readers in his quiet, authentic, straightforward voice. In his alone time he hides in his tree house, makes lists of the day’s events, and “remembers,” uses a special form of internal music or IM, and thinks about his “holy books” and scriptures of which he is so fond. He goes to work at his father’s law firm during the summer to become more connected to the “real world” and ultimately must move from being a quiet observer to one who takes action.

“My daughter was diagnosed with Asperger’s in second grade,” explains Kathryn Erskine, author of the upcoming Mockingbird (Philomel, April 2010) a nuanced and poignant story about Caitlin Ann Smith, who, like Erskine’s daughter, has Asperger’s. “Since then, with a lot of work, she has become more socially adjusted but still often sees things differently. I’d like readers to see that there’s always an ability to change and grow no matter who you are, but MUCH more importantly, I want readers to see that just being different doesn’t mean 'weird’ or 'bad.’ It’s just different and, in fact, can be positive. I think people in Caitlin’s world benefit from her and find that they themselves are changing and growing because of her.”

Caitlin, who has much difficulty navigating her world, must also cope with the loss of her brother Devon, who was tragically killed in a school shooting. Her few comforts are sucking on her sleeve, her dictionary and TV, her computer, and gummy worms that she gives names to. Rarely is she able to relate to people around her, who she describes as the “puffy blue-marshmallow wall” person or her brother’s Cub Scout friends–those kids in “green pants.”

In trying to find the true meaning of “closure,” one of the words she has found in her beloved dictionary, Caitlin researches the human heart, literally and figuratively, in order to understand how her brother died, and along the way she reaches out to Michael, a younger boy who lost his mother in the same school shooting. By coming out of her “hidey holes,” both real (under her brother’s bed) and imagined, to find her closure, Caitlin shows us what true determination is.

In his brilliant memoir, Episodes: My Life as I See It (Roaring Brook, 2009), 21-year-old Blaze Ginsberg, who is a high-functioning autistic, presents his world to readers in a highly unusual format inspired by the movie-based Web site IMDb.com, including lists of casts, trivia (“the Powerade was blue”), goofs (“on the way to lunch the red light stayed red for five minutes”), notes (“I really wanted a girlfriend in this episode”), and soundtracks and summaries of what went on any given day at his special private school in southern California. Among the exhaustive minutiae of his life are poignant, telling details of his heartaches, crushes (Hilary Duff), obsessions (buses, recycling trucks, and PBS Kids programs), and meltdowns, but most importantly, Ginsberg give readers a unique glimpse into an adolescent mind that is simply wired differently. He says, “At times being autistic is not easy; it is known for getting in the way of things. Sometimes it stops you from doing things like everyone else because you don’t understand something or it’s difficult to figure out what people mean. Also you think about things differently from other people and that can be difficult.”

To simply dismiss adolescent literature with autism as the current hot thing greatly misses the mark. There is much in these works that will resonate with all readers, whether they have a disability or not. The trials and triumphs of the human heart are the same for all. Blaze Ginsberg says, “I try to connect with the world like everyone else, through people, my family and friends.” Adds Cynthia Lord, “I keep one email from a 10-year-old sibling on the wall next to my desk. It says simply, 'I was so scared I was the only person who felt this way.’ Sometimes books say the things we can’t.”