Written by Virginia Sole-Smith
Published by Real Simple
Real Simple Feature
Billy Megargel is halfway through his morning yoga practice when he decides that he would like his teacher, Hannah Gould, to add a boat pose to the sequence. He finishes a sun salutation, steps off his purple mat in the sunny barn behind his family's home in Weston, Massachusetts, and chooses one of many Velcro-backed photos hanging on the wall. Billy, 26, hands the picture, which shows boat pose, to Hannah. She points at the picture, looks directly at Billy, and gives him a thumbs-up. Billy treads his feet in a pleased jig, reclines on his mat, then lifts his body into the challenging V-shape-seat down, legs up, torso angled back, arms stretching forward.
"The harder something is, the more interested Billy is in doing it," says Eve Megargel of her son, who has autism. Hannah counts down from 10 on her fingers. When she reaches one, Billy rests back, breathing deeply. Hannah gives him a thumbs-up, and Billy offers a little grunt in response.
Eve hasn't heard her son say a word in 20 years. Billy's autism inhibits speech, and when he was diagnosed, at age two, doctors explained to Eve and her husband, Matt, that historically people like Billy had been institutionalized. They told the Megargels to expect their son to have almost no capacity for learning and that he would never be able to communicate with them. "It was basically "There's no more we can do for you, good luck!" recalls Matt.\
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They had known something was changing with Billy. Although he had been a strong, healthy baby who walked before age one, he wasn't starting to string sentences together the way his older brother, Ben, had. In fact, he was beginning to lose the 50 or so words he had mastered. But Eve knew that Billy had thoughts and opinions about the world around him, like any curious toddler-he just wasn't using spoken language to express them.
Schools in the area were not equipped for Billy. "Most of what was offered was about teaching Billy how to follow directions or answer very basic questions, like 'Do you need to go to the bathroom?'" One special-ed consultant said, "Our goal is for Billy to learn to comply." Eve wanted much more: "I wanted Billy to be able to ask his own questions and spontaneously tell us what he was thinking or feeling." Eve and Matt refused to let Billy languish. "If you stop thinking of someone as a communicator, you stop accepting their humanity," says Eve.
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At home, Eve and Matt began to devise their own communication systems with Billy, using pictures. When Billy learned a word like watermelon, for example, by seeing a picture of a watermelon, he was then able to pick watermelon out of a list of printed words. Eve and Matt talked directly to Billy, just as they talked to Ben, telling him about upcoming plans, asking him questions, and narrating the sights on the drive to school. (Billy ended up attending a school out of district.) And Billy began to respond: a tongue click to indicate that, yes, he would like cake at his fifth birthday party, a gesture (rubbing his forefinger over his thumb) to say that he wanted to watch TV.
Eve could see that Billy could understand far more than anyone assumed and that he had opinions and preferences. The family began to experiment with voice-output computers, a technology then in its infancy. At first it wasn't clear that Billy-who possessed a wild energy that spurred him to bounce endlessly on the family's trampoline or sometimes smear himself with peanut butter and run laps around the dinner table-could follow the subtleties of computer navigation. Typing proved too challenging, but Billy was able to use a mouse and a touch screen. Eve knew that they were on to some- thing when Billy's class played "The Ants Go Marching" too many days in a row. Billy's teacher reported that just as she put the name of the song on the board, Billy, then six, used his device to say, "I don't like this."
Anyone who spends five minutes with Billy today can see that he communicates constantly. Like other people with autism whom Eve describes as "nonverbal communicators," Billy uses visual images combined with text, body language, and vocal intonations to convey his thoughts and feelings. This has been, and continues to be, a team effort involving the hard work
of Billy, Eve, and a band of teachers and aides-some trained autism therapists and others with artistic or athletic teaching expertise. "Eve is our general con- tractor," says Matt. "She's studied all the ways people work with autism and takes from each approach what works for Billy."
Billy plays music, does gymnastics, and paints. In fact, Billy's passionate, colorful artwork is so much a part of his life that the family garage has been turned into a studio filled with canvases, easels, and a rainbow of paint tubes.
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Billy's artistic talents were discovered "on a hunch," as Eve puts it, when he was in elementary school: "We knew he loved colors. Billy has always liked to pick out his own outfits and put together unusual color combinations." Indeed. Matt, who has a standing Saturday date with Billy to go to their favorite shops, laughs about the number of times Billy ended up in the girls' department when he was younger, attracted by the more vivid shades. ("Rules like 'Boys don't wear pink' aren't part of Billy's worldview," says Matt.) But Eve was still amazed, when she first bought some acrylic paints, to see Billy pick up a brush, select a color, and begin to work with an immediate Jackson Pollock-style intensity and focus.
Sessions begin with Billy's choosing a piece of inspiration. It might be a patterned fabric, a painting by a famous artist, or, today, an earlier piece of his own creation. Then he decides which colors to use, pointing them out on a board of paint blobs, all neatly labeled with their names. Eve or another assistant helps him open the tubes that he's chosen. Billy decides what texture to make the paint, choosing again from a board of options-and finally he paints. A helper stands back, occasionally handing over another brush or refilling a paint color but otherwise letting him work.
On this particular day, Billy plays the same country song over and over while he works. (Whenever it ends, he pauses in his painting to press play again on a boom box.) "Billy picks a different song every time he paints," says Eve. "We think this is another way that he expresses himself." The music and the painting must match.
In hindsight, of course, it makes sense that someone who understands the world primarily through pictures could be a gifted visual artist. "But we aren't taught to view people with autism as creative expressionists," says Eve.
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It's still often assumed that people with autism, especially those who can't speak, are unable to decipher their feelings. But Eve could always see Billy exploring emotions. When he watched Charlotte's Web as a little boy, he wept when the spider died. At times when Eve seemed sad, Billy would put his hands on her face and delicately try to move her frown into a smile. And when Billy himself felt angry or frustrated, he would have meltdowns. "That's when these kids get labeled as 'behavior problems,"" says Eve. So when he was small, Eve began to teach Billy the words for different feelings, using cartoon faces to illustrate them. As Billy learned more ways to express himself, the meltdowns lessened. The day that his brother, Ben, left for college, Billy walked by his device on the kitchen counter and, almost offhandedly, navigated to Ben's face and then to the word sad.
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Having this sort of vocabulary helped Billy and his family through what they now refer to as "Billy's dark years," the time from age 17 to 23. He struggled then with near daily pain from severe gastrointestinal problems and a seizure disorder, both of which are often found in people with autism. (Researchers don't understand why such problems can coexist.) Many days Billy felt too ill to leave his room. When he did get up, he was often suffering and, at times, even violent. Eve recalls the night that he tried to poke her eyes, and another day when he rushed at her and grabbed her neck, digging in with his fingernails until he left red welts. She pulled herself free and ran from her son, locking herself in a bathroom to call Matt home from work. "I knew his actions were a cry for help, but in that moment I couldn't help him," says Eve.
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Billy and his yoga teacher, Heather Gould, in a small group class in the Megargels' barn. The more challenging the pose, the more Billy enjoys it, says his mom.
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A new seizure medication and changes in Billy's diet (no gluten, no dairy, no eggs) eventually (and gradually) led to improvement, to the family's great relief. Eve feels that the communication model the family used was a large part of what got them through that very difficult time.
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Over the years, Billy's artistic abilities have evolved. His early work is dominated by
broad strokes, and now his work is more intricate and layered. Through his current communication device, a regular Panasonic Touchbook, Billy can put together questions-like "Where's Dad?"-on a touch screen and present the person he's asking with a list of responses (such as "at the gym," "on a business trip," or "I don't know- let's call him"
Eve is always watching for gaps in Billy's communication and adds new words to his device frequently-from the names and faces of new people he meets to an emotion that she suspects he's trying to express.
Ample resources and a tremendous investment of time have helped Eve customize Billy's life, but she is quick to clarify that many people with autism can thrive with the right opportunities - and that there's nothing unusual about her son. "I don't want Billy to be conveyed as some kind of exception to the rule," she says. "He's run-of-the- mill. This didn't all happen because he's exceptional; it happened because we had a certain philosophy and we used certain tools." Eve has written a book about this philosophy, called Learning to Kiss, which is both personal and practical. She is on a mission to help the world understand the power of nonverbal communication and to see people like Billy as the intelligent, capable individuals their families already know that they are.
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One of the last times that Eve can remember hearing Billy talk was when he was six years old. It was Eve's birthday, and the family was gathered around the table, waiting for Eve to blow out the candles. "At that point, I hadn't heard him speak in a long time," she recalls. "But Billy came up to me, looked me right in the eye, and said, 'Mom." He never said it again, but Eve is past grieving for her son's lost language. What she likes to remember is the connection she felt with Billy in that moment, because it's the same bond she feels with her son today. "You don't need words to understand that," she says. "You just need to know Billy,"
For more on the communication model that the Megargel family has developed for Billy and others with autism, visit voicecolors.org.
Eve knew that they were on to something when Billy's class played "The Ants Go Marching" at circle time too many days in a row. Billy's teacher reported that just as she put the name of the song on the board, Billy, then age six, used his device to say, "I don't like this."
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Communicating with People Who Don't Speak
Practical advice from Eve Megargel and experts in the field
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USE AN AGE-APPROPRIATE TONE.
"It's a common misconception that because someone doesn't speak, they must be mentally at the level of a toddler," says Samantha Crane, the legal director and director of public policy at the Autistic Self Advocacy Network. "That leads people to talk to nonspeaking communicators like they're babies, and that's disrespectful." Instead, "presume competence," says Beth Myers, the executive director of the Taischoff Center at Syracuse University, in Syracuse, New York, which provides students with developmental disabilities access to higher education. Talk to a nonspeaking adult with the same tone that you would use for any other adult
WAIT FOR A RESPONSE.
"If you're talking to someone who uses a communication device, remember that they may need time to coordinate their movements," says Crane. Don't assume that the person is not listening if he or she is not looking at you or has body language that otherwise seems disengaged.
TALK TO THE PERSON- NOT THE PERSON NEXT TO HIM.
"We see this all the time in schools. Other kids and teachers will talk to a student's aide but not engage the student," says Myers. Eve notes that people regularly talk through or past Billy, as if he isn't there. "People hear 'nonverbal' and this wall goes up," she says. "But that's exactly the kind of barrier we have to break down."
