Her Words Give Voice to the Life Within

Sarah Ann Stup bows 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, who is 22 and autistic, turns the device on and off. She squints, then fusses with a piece of tape. Her eyes flicker upward, seemingly unseeing. She rubs her nose, looks off to the side.

Slowly, her head tipped close to the table, Sarah 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 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 self-published book tells the story of an autistic turtle named Taylor and his trials at school. The book and illustrations, along with selections from Sarah’s writings and photographs chronicling her life, are installed at an exhibition at Villa Julie’s campus in Stevenson, Md.

“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 has 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, Sarah 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 in Santa Barbara. 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 known autistic writers includes Donna Williams, Stephen M. 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 co-president of the Frederick County, Md., 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, Sarah 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, Sarah says, but his public life began when the Arc of Carroll County, Md., an advocacy organization for people with developmental disabilities, connected Sarah to Villa Julie senior Kevin Walla. A cheerful, 21-year-old aspiring filmmaker, Walla worked as Sarah’s “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 Sarah’s 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 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 Temblazoned 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 is available through Trafford Publishing and Sarah’s website, www.sarahstup.com.

The major force behind all this activity is her mother, Judy, a warm woman with a girlish laugh who has served as her daughter’s primary caretaker and advocate.

Judy usually sits at Sarah’s side while she writes, gripping her elbow and hand -- which Sarah says helps her keep track of her body -- and urging her, in a gentle voice, to concentrate or relax. She reads books to Sarah, 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 uses the same outdated, noisy communicator keyboard because she likes the familiarity; computer screens can disorient her. As strips of paper snake out of the little machine, Sarah unfurls them and stares at the line of pixilated words stretched between her hands. Judy is usually there to pick up Sarah’s missives and glue them to standard sheets of paper.

Sarah developed normally until she was about 3, Judy says. But at a time when most children’s development accelerates, Sarah 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 looked up the word “autism” in the dictionary one day, she thought she would collapse, she says.

Eventually, Sarah 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, Sarah 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,” Sarah spelled out repeatedly. “I smart.”

“She wanted us to know that,” Judy says. “That she was inside.”

Judy had trouble, at times, explaining to friends and family what Sarah’s progress meant -- that it was extremely important but it wasn’t a cure. “She still deals with autism, and it was a struggle for her. But she writes about that. She’d say she wasn’t alone.”

Judy interrupts herself to lean over and read aloud from one of Sarah’s poems:

“I was born when typing happened,

“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 began attending a regular public school in Frederick, Md., where she still lives with her parents. She continued through high school, graduating in 2004 at age of 20.

Sarah is very spiritual, insisting on attending church every Sunday, her mother says. 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.

Sarah 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 has his time in the limelight at the Villa Julie exhibition, “Ramps Over Fear,” which ends May 26.

“When people cross over the ramp, they may learn to trust differences,” Sarah 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.”