The Baltimore Sun
March 12, 2006
© 2006, The Baltimore Sun
Sarah Ann Stup bends over a small, cream-colored keyboard. Her eyes are hooded, face hidden. Her middle finger, crowned with a chipped half-moon of lavender polish, hovers, extended, over the little machine propped on her dining room table.
“It’s OK, honey, just go ahead and start,” her mother, Judy Stup, whispers.
Sarah Stup, who is 22 and has autism, turns the device on and off. She squints, then fusses with a piece of tape. Her eyes flicker up, seemingly unseeing. She rubs her nose, looks off to the side.
Slowly, her head tipped close to the table, she begins poking jerkily on the keys before her. She taps then pauses, taps, pauses. Finally, a ribbon of curling paper inches out of the side of the clacking machine and rests on the dining room table.
This is how Sarah Stup talks and writes. This is how she asks questions and writes poems, and most recently, how she painstakingly, one letter at a time, wrote Do-Si-Do with Autism, a children’s book.
Illustrated by Villa Julie College students Matthew Starchak and Libby Sanders, the book tells the story of an autistic turtle named Taylor and his trials at school. The book and illustrations, along with selections from Stup’s writings and photographs chronicling her life, are installed at an exhibition at Villa Julie’s Stevenson campus. The self-published book will go on sale at the end of the month.
“Writing is my voice because my sounding voice is broken. With writing I become a real person,” she says. “With writing I feel alive, and not like a shell with no inhabitant.”
“Writing is my way out of a lonely place where only God knows,” reads an excerpt at the show. “The lid opens and out comes pieces of Sarah, a girl with wings who soars above the place with no hope called autism.”
Advocacy groups say one in 166 infants born in this country have autism, a developmental disorder that varies in its expression but significantly affects communication, social interactions and other behaviors. Her body “acts dumb,” refusing to follow directions, Stup will say.
As the prevalence of the disorder increases, so does the literature written by experts, teachers and parents, says Hod Gray, the director of Special Needs Project, a disability bookstore based in California. He estimates that his store carries about 400 children’s books about disabilities. While some discuss autism or other specific issues, many are more vague, focusing simply on a character who is a little different.
“But it’s something else again to hear what a person with autism has to say about it,” Gray says. “This will always be a fairly small source of books, but it is growing in importance. And I think the autism community is very accepting and respectful toward these books because they understand this is reportage from a country that we don’t know too much about.”
The small number of autistic writers include Donna Williams, Steven Shore and Temple Grandin, who has received national attention for her books about autism and animal behavior.
“By Sarah allowing us in, we’re able to get perspective and see what they’re thinking and feeling as children with autism,” says Shawna Capotosto, the parent of an autistic child and the co-president of the Frederick County chapter of the Autism Society of America. “It gives you a window into their minds and, quite frankly, the window can be closed for a lot of these children.”
Taylor, the cute, green, book-loving protagonist in Do-Si-Do, always wears a blue cap and big red backpack. He gets dizzy when he looks people in the face and always sits alone on the school bus.
When Taylor hears students talking about an upcoming square-dance lesson in gym class, he is filled with dread. “Oh, no!” he thinks. “I’ll be dopey with autism.”
Of course, class goes horribly. When Taylor grows confused and disoriented, he retreats to the bleachers to find solace in his books.
To Taylor’s surprise, his classmates follow his lead, joining him one by one. Eventually, he has the whole class reading — and he no longer sits alone on the bus.
At the end of the book, Stup includes advice for young readers with autistic friends or classmates. Her hope is that the book will be used as a teaching tool to show that “those with disabilities and other differences are real people inside bodies that work differently,” she says. “We are worth knowing.”
Taylor lived inside her for years, she says, but his public life began when the Arc of Carroll County, an advocacy organization for people with developmental disabilities, connected her to Villa Julie senior Kevin Walla. A cheerful, 21-year-old aspiring filmmaker, Walla worked as her “job coach,” helping her apply for funding, complete the manuscript and search for an agent or publisher. (She has gotten a couple of promising nibbles so far.) He is also the mastermind behind the gallery show.
Before they met, Walla read through her portfolio. “I was blown away,” he says. “There’s remorse, frustration. You can sense anger. At the same time, you can sense loyalty, faith, beauty. There’s truly an artist involved.”
Walla recruited Starchak and Sanders, friends who are visual communications majors, to illustrate the book. They created the pen and watercolor images based on Stup’s very specific descriptions. “Every little thing you see character-wise is written from Sarah’s view,” Starchak says, from the rooster’s flannel shirt and sunglasses to Taylor’s T-emblazoned cap.
The book, which cost about $5,000 to produce, was funded by the Maryland Developmental Disabilities Council, the Arc of Carroll County, the Maryland State Department of Education Division of Rehabilitation Services, as well as the Stup family. It will be available through Trafford Publishing and Sarah Stup’s almost finished Web site, www.sarahstup.com.
The major force behind all this activity is Judy Stup, a warm woman with a girlish laugh who has served as her daughter’s primary caretaker and advocate.
Preternaturally patient, she usually sits at her daughter’s side while she writes, gripping her elbow and hand — which Sarah Stup says helps her keep track of her body — and urging her to concentrate or to relax in a low, gentle voice. She reads books to her daughter, takes walks with her and is the main archivist of her work, carefully preserving her written material in a series of photo albums.
Most of the time, Sarah Stup uses the same outdated, noisy communicator keyboard because she likes the familiarity and computer screens can disorient her. As strips of paper snake out of the little machine, she unfurls them and stares at the line of words stretched between her hands. Her mother is usually there to pick up her missives and glue them to standard sheets of paper.
Stup developed normally until she was about 3, her mother says. But at a time when most children’s development accelerates, she became increasingly hyperactive and impulsive, and her speech and actions grew regimented and obsessive.
Doctors couldn’t agree on a diagnosis, but slowly the pieces started to coalesce. When Judy Stup looked up the word autism in the dictionary one day, the definition seemed so familiar to her that she thought she would collapse, she says.
Eventually, her daughter stopped speaking almost entirely. (To this day, she only occasionally speaks, and when she does, it’s only a couple of words at a time in a tiny, almost imperceptible whisper.) For years, her family could barely communicate with her.
Then when she was 8, she began pointing at a piece of paper with letters and spelling words. For the first time, she could name her favorite color or say what she wanted for Christmas.
“I smart,” she spelled out repeatedly. “I smart.”
“She wanted us to know that,” Judy Stup says. “That she was inside.”
She had trouble, at times, explaining to friends and family what her daughter’s progress meant — that it was extremely important and yet, it wasn’t a cure.
“She still deals with autism, and it was a struggle for her,” she says. “But she writes about that. She’d say she wasn’t alone.”
She interrupts herself to lean over and read aloud from one of her daughter’s poems.
“I was born when typing happened,” the poem goes. “I loved and hated, was happy and sad,/and lots scared./And now I could tell these feelings./I said wishes, and they often came.”
In fourth grade, after she learned to type, Sarah Stup began attending a regular public school in Frederick, where she still lives with her parents. She continued through high school, graduating in 2004 at the age of was 20.
She is very spiritual, insisting on attending church every Sunday, her mother says. But she finds serenity elsewhere, too: in the ocean, in music, in her books.
She especially loves poet Robert Frost and works about struggles with nature. She dreams of being a well-known author.
She typically writes for several hours a day, often nestled into a nook in her kitchen. She is the author of poems and essays; her next writing project is a book for middle school students tentatively titled Paul and his Beast.
“His Beast is really autism, the thief of politeness and friendship,” she says.
But first, Taylor will make his debut March 28. That evening, Sarah Stup will attend a reception at the Villa Julie exhibition, “Ramps over Fear.”
“When people cross over the ramp, they may learn to trust differences,” she says. “To be placed on a gallery wall is like parting a shell long enough for the normal world to see another world that longs to find peace.”
“Ramps over Fear” will be on display through May 26 in the Paul Companies Pavilion at Villa Julie College. A reception will be held in the gallery from 6 to 9 p.m. March 28. For hours and other information about the exhibition, call 443-334-2163. For more information on Do-Si-Do with Autism, go to www.SarahStup.