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People Top 5
LAST UPDATE: Wednesday January 28, 2015 04:10AM EST
PEOPLE Top 5 are the most-viewed stories on the site over the past three days, updated every 60 minutes
- April 11, 2005
- Vol. 63
- No. 14
Autism: Breaking the Silence
Once Unable to Speak, Jamie Burke Uses a Keyboard—and Perseverance—to Give Voice to His Dreams
A typical teenage moment? More like a miracle. Burke, who was diagnosed with severe autism when he was 3, doesn't simply speak. He types the words on a keyboard held by his mother, Sheree, then reads them aloud from a display screen at the top of the device. The process is awkward, painstakingly slow—and revolutionary. For the first 12 years of life, Jamie's language skills consisted of a few random snippets he had picked up from videos like Flash Gordon. But thanks to persistent parents and an innovative, controversial technique called facilitated communication (FC), he now makes himself understood on a broad range of subjects, from science fiction to pre-calculus. "Being able to speak," he says, "was like a release from the jail I was kept in."
Instead of walls, Jamie's prison was defined by the still mysterious developmental disability that once robbed him of the ability to talk and to build relationships even with his own two brothers. His mother, Sheree, now 55, describes him endlessly paging through books and sometimes flapping his hands uncontrollably, set off by ordinary triggers like the sound of a TV or the automatic door at the grocery store. He rarely made eye contact. "He would just hold that gaze and stare," she says. "It was baffling." Because she and her husband, Mike, 56, a former corrections officer, couldn't tell if the boy was in pain, they would rush him to the doctor when he cried without some obvious explanation. "Initially, we said, 'If all he could do was just say 'yes' and 'no' so he could tell us if he was in pain, then that would be all I would want,' " says Sheree.
The Burkes got much more than that. Using FC, a trained aide helps the autistic "speaker" type on a keyboard or point to letters on a simple board. The support is required because many children with autism, Jamie included, lack consistent motor control. Over time, however, the aide gradually reduces the assistance as the speaker becomes more independent. Critics of the relatively rare technique—FC is taught at a half dozen locations around the country, and the number of children working with the technique probably number under 1,000—say it is impossible to know whether the words come from the speaker or the aide. But Jamie Burke has helped prove FC can work by typing independently and becoming one of the first severely autistic children to actually speak the words he types in a halting and at times poetic voice. "It's not a cure," says Marilyn Chadwick, a Syracuse University special-education consultant who has worked with him. "But it has given him a much better chance for a rich life."
Jamie is also helping his doctors understand his own autistic behavior. Asked why he was so sensitive to the sound of the TV, he picks up his keyboard and methodically types out a sentence, which he then reads aloud. "The TV drove me crazy because I heard every little molecule of energy moving within the nucleus of the sound," he says. At Westhill High School, where he attends mainstream classes (with the help of aides), Jamie is accepted by the other students, and he has plans for college and a career beyond. "Science. Biology. Research. Robotics," he says. Looking on, his mother proudly tells him, "You've got some things you're looking forward to."
That kind of optimism was in short supply for Mike and Sheree when a psychologist told them that Jamie, newly diagnosed with autism, would likely end up in a group home. Even then, his parents sensed a depth in their son. "You would look in Jamie's eyes, and you knew there was intelligence going on," says Sheree, a former stenographer who also ran a daycare center. "He would stare right through me, like, 'I'm in here. Get me out.' "
Fortunately for him, nearby Syracuse University had just started its Facilitated Communication Institute, founded by education professor Douglas Biklen, who learned FC from its developer, Australian reading instructor Rosemary Crossley. Jamie was 5 when an aide at school started working with him, first on a letter board and then on a typewriter. A full seven years of practicing the technique passed before his mother heard that in school one day Jamie had typed the name of his teacher. "I just dropped to my knees," recalls Sheree. She had spent hundreds of hours as her son's facilitator, supporting him at the wrist, then, when he was 10, at the elbow, and two years later only at the shoulders. More dogged practice led to another breakthrough in the summer of Jamie's 13th year. "He began to whisper, just one word or two words," recalls Sheree. When it dawned on Jamie that he might be able to enunciate the words as he was typing, says Sheree, "he typed, 'A new era is coming.' " Soon he was able to read from a book before some of his classmates. "We all stood around with Kleenex," she says. "We just wept."
Jamie's remarkable progress has helped to quell—but not to silence—criticism about FC that reached its height in 1993, when PBS aired a critical documentary that called the technique into question. The next year the American Psychological Association labeled FC "unproved" because controlled studies had focused only on children who use the device with the help of others. "The critical issue," says Yale School of Medicine's Dr. Fred Volkmar, a leading autism authority, "is whether the communication is independent." Dr. Ricki Robinson, a University of Southern California medical school professor, treats 400 autism-spectrum patients in her La Canada, Calif., pediatric practice and says some 20 percent of them use FC with success. "I've seen it happen too many times not to use it," she says. "I tell parents this is a very valuable tool."
Nita Harrison of Syracuse, for one, needs no convincing. Her severely autistic daughter Lucy, now 28, could utter only nonsensical phrases until 1989, when she began working with a facilitator. She is now studying psychology at Syracuse's Le Moyne college. "FC is messy," Nita concedes, "but it's the only way these people have to communicate."
Rita and Bob Rubin of Whittier, Calif., had to overcome their own skepticism before trying the technique on their then teenage daughter Sue. "I thought there would be a Ouija-board effect," says Rita, 58. Once labeled retarded, Sue, now 26, is a history major at Whittier College with a 3.98 GPA. She recently wrote an Oscar-nominated documentary, Autism Is a World, scheduled to air on CNN in May. Meanwhile Jamie Burke is busy preparing for the next step in his own long journey: entering college in the fall. "I want kids to understand," he says by way of his keyboard, "that they must seek to learn all that this world can offer them."
Thomas Fields-Meyer. Tom Duffy in Syracuse and Ron Arias in Los Angeles
- Tom Duffy,
- Ron Arias.
January 27, 2015
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