THE VOICE

Volume 5, Issue 3

Page 4

Autistic Son Rises (continued from page 3)

Refusing To Say No

After doctors diagnosed their son Barry as autistic, Barry and Samahria Kaufman visited several treatment programs but were dissatisfied with what they saw. So the Kaufmans decided to wing it, making up their approach as they went along.
They began by spending hours in the bathroom with Raun, mimicking his behavior. When he twirled plates, they twirled plates. When he flapped his hands, they flapped theirs.
Critics complained that they were making matters worse by reinforcing his behavior. But it was the only way they knew to reach their son.
Raun's mother recalls vividly the moment she first made a connection. "I can get choked up just thinking about it," she said during a phone interview last week. "At the beginning, he never even glanced for just a second at anybody."
But one morning, about a month after she began working with Raun, she sat stacking a hollow, plastic block on top of another, trying to get him to place a third block on top. He wouldn't do it. He kept taking the block off and throwing it against the tile floor and walls, where it made a loud noise as it ricocheted around.
On an impulse, his mother decided to join in the fun. Grabbing the entire box of blocks, she flung them around the bathroom, creating a cacophony of sound. Then she turned toward Raun.
"He was looking right at me with this big smile on his face," his mother recalled. "He knew that I was imitating him. He finally saw me and wanted to be with me. It was incredibly beautiful."
Raun's parents were determined never to view their son's condition as a tragedy.
"They looked at me, spinning in circles, flapping my hands, and saw an amazing little boy touching the sky in a world of his own creation," Kaufman wrote in a booklet about his life. "They always totally accepted me exactly the way I was, whether I improved dramatically or remained completely unchanged.
"They wanted to reach out to me and build a bridge from their world to mine, a bridge they knew I would cross only by choice -- never by coercion." Kaufman said his parents sought first to make a connection, then to teach him the things he needed to learn. He contrasted this to other approaches in which children are punished for not following a prescribed regimen.
"These kids are shown a world marked by disapproval, physical force, condescension, and a total lack of control over their environment," he wrote. "Who would, after seeing such a world, do anything other than run away or push against it?"

Specialists are Mystified
Experts aren't sure what to make of Raun Kaufman's amazing recovery. While many autistic children show remarkable improvement, it is rare for someone to completely "emerge" from the disorder.
Some question whether Kaufman was diagnosed properly as a young boy.
Bryna Siegel, director of the Pervasive Developmental Disorders Clinic at UC San Francisco, said she knows of two colleagues who examined Kaufman before his parents began working with him and did not believe he was autistic, although he did have severe language difficulties and was withdrawn. His parents took him to numerous experts before the diagnosis was made.
"Was Raun ever really autistic?" Siegel asks. "I don't think he met full diagnostic criteria."
His mother disagrees vehemently, saying he exhibited all the classic signs and that she has written proof of his diagnosis.
The confusion exists because there is no black-and-white test for autism. Doctors analyze whether a child exhibits specified behaviors before reaching a conclusion.
Portia Iversen, president and co4ounder of Cure Autism Now, a Los Angeles-based group of parents and clinicians dedicated to finding treatments and a cure for autism, said she finds Kaufman's story inspiring.

"I think it's absolutely true and it's heartening," she said. "The research has suggested that about 4 percent of these people recover for no known reason."