Evan's syndrome

Evan Howell could win your heart in an instant with his wide blue eyes and rambunctious energy. At age 2, he learned his ABC's by watching "Sesame Street." The only health problems he suffered were chronic ear infections.

But by Evan's third birthday, his parents suspected something was wrong. Evan had learned to talk, but often seemed to be just repeating words said to him, like an echo.

Then the temper tantrums started. Just trying to get him dressed in the mornings seemed torturous. He'd scream and throw a fit at the touch of a T-shirt. He didn't interact much with other children nor use imaginative play. A team of medical professionals diagnosed Evan with autism, a neurological disorder with no known cause or cure. "It was devastating," says his mother, Barbara Anderson. "I read everything I possibly could (on autism). I was depressed, some times more than others, but I just tried to get all the information I could." Autism impacts the way the brain processes and integrates information, resulting in problems in communication, social interaction and behavior. It is the third most common developmental disability, even more common than Down syndrome. Half a million people in the United States have autism, including an estimated 1,200 people in the greater Spokane/Coeur d'Alene area. People often have two images of autism: the character of Rain Man, an autistic savant played by Dustin Hoffman in the movie of the same name, or that of a child rocking back and forth in a corner. Most autistic people fit neither of these two extremes, although there is a wide range in the severity of autistic symptoms. Temple Grandin, an assistant professor at Colorado State University, is at the high end of the range. An autistic woman with a near-genius IQ, she earned a doctorate in animal science and revolutionized the American livestock slaughtering industry. Few autistic people have been able to communicate as well as Grandin. She has opened the door to much greater understanding of the condition. In a 1996 US News & World Report article Grandin says autistics have constant sensory overload. "If you had a speaker inside of you blaring rock-and-roll with a psychedelic light show," she said, "you'd withdraw, too." Grandin won a livestock industry award in 1995 for her design of a ramp that reduces panic in cows and hogs as they're led to slaughter. In developing the ramp, Grandin says she pictured things from a cow's perspective. "Animals think in pictures, and that's the way I think," she says. Words are meaningless to an autistic person unless they bring to mind a visual image already in the person's memory, according to Grandin. Doses of antidepressants have helped alleviate some of Grandin's autistic symptoms, but all treatment for the condition is experimental. And Grandin is an exceptional case. Evan, now in first grade, attends school with the help of an aide in a regular classroom at Wilson Elementary. Speech and occupational therapies beginning at age 3 have helped improve his ability to cope. A picture schedule helped his days go more smoothly. Regular pressure on his skin with a soft bristled brush helped calm his over- sensitivity to touch. Now he's learning to read and has made friends with classmates. But with his autism, Evan is sometimes stuck in a world all his own. A world where everyday noises like a lawn mower or cheers at a baseball game are as painful as a firecracker at close range. A world where other children's conversation can sound like a foreign language and new people or a change in schedule are as frightening as being lost in a crowd. "Everything we do, we have to do with more explanation and more patience," says Anderson. "For example, coming home from school, if I have to do an errand, it can be a really big deal. It can cause a tantrum because predictability and routine are so important to Evan." Going to school each morning requires patience, too. The five- block walk usually takes at least 20 minutes. Evan can become fixated on a leaf, or the bark of a tree, or a hole in the sidewalk, and his mother must prod him to keep walking. Meeting new children is difficult, too. "It's a learning process," says Anderson. "When they say `Hi,' we don't say, `Go away!'" A cheery greeting can seem to Evan like an intrusion into his world. Once a situation is familiar, then it's less threatening. Thinking about Evan's future can also be frightening, but Anderson doesn't want to limit her hopes for her son. "I'm going to proceed as if he could get through high school, maybe go to college or technical school, have a career," says Anderson. "I wonder about relationships. I would hope that maybe he could have a family, if that's what he wants. Maybe that's unrealistic." There's one woman in Spokane who would applaud Anderson's high hopes for her son. Pat Garvin raised an autistic daughter, Margaret, to adulthood and became a political activist in the process. "One of the things I have certainly seen is that you cannot predict these kids' future," says Garvin. "If some of the people who saw Margaret when she was very little saw her now they wouldn't believe it. We were told when she was first tested for the school district, send her to Lakeland, she'll never learn anything. That's what some of them said. Thank goodness we (didn't do) that. I wrote my first letter." Today, 31-year-old Margaret lives in her own home with three disabled friends and staff support. She holds a job at the Artisan's Ark, a woodworking shop and retail store, and she enjoys activities like bowling. "She's blossomed into a lovely young woman and we never thought that could happen for her," says Garvin. "It's wonderful." Garvin has blossomed, too. She did more than the difficult job of parenting an autistic child. She pressured educators, legislators, even the Governor to respond to the needs of people like her daughter. And she's still carrying the flag. Garvin says at every state budget session somebody wants to cut funding for support services for the disabled. She jokes with a friend, whose daughter is also disabled, "We can't ever die!" "Even though Margaret has a good life right now and we're very pleased," says Garvin, "in the back of our minds is always: What happens when we're not around anymore?" Both Garvin and Anderson believe it's essential to educate people about autism to combat prejudice and misunderstanding. Despite the best of care and education, autistic people still sometimes behave in ways that seem inappropriate. Even as an adult, Margaret continues to sometimes throw temper tantrums. "Sometimes she goes from zero to full-blown and you just stay out of the way and just let her work through it. Sometimes you can redirect her to something else. Sometimes you can nip them," says Garvin. Margaret will never be able to live completely on her own. To live full and productive lives most autistic people will need help from skillful, caring and knowledgeable people. "I hope to build a strong support system, not only in our family, but in the community," says Anderson. "So Evan can live as independent a life as possible. Having community support for that is essential."

Copyright 1999 Cowles Publishing Company
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