Reprinted from the Contra Costa Times
Published Tuesday, August 8, 2000
"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."
By Sandy Kleffman TIMES STAFF WRITER --------------------------------------------------------------------------------
At the age of 18 months, Raun Kaufman received what he now considers a death sentence: He was diagnosed as autistic and retarded, with an IQ below 30. Experts told his parents he would never speak, never read, never communicate in a meaningful way.
At best, he might learn to dress himself and perform other menial tasks. But for his own sake, he should eventually be placed in an institution, doctors said.
Today, Kaufman holds a degree in biomedical ethics from Brown University -- and remains forever grateful that his parents chose not to heed the doctors' advice. Against the recommendation of experts, friends and family, his parents forged their own method for reaching their unreachable child.
Kaufman's story -- detailed in a made-for-TV movie and book, "Son-Rise: The Miracle Continues" -- illustrates the mystery that surrounds autism, a severe developmental disorder with no known cause or cure.
It is a tale of parents who refused to give up, who saw possibilities in their son rather than deficiencies.
Kaufman's story also provides hope for the thousands of autistic children who remain locked in their own worlds. While few will experience the stunning turn-around Kaufman enjoyed, he is convinced autistic children can make dramatic progress if people take steps to lead them out of their isolation.
"So many of these children are given life sentences -- that's just as silly as saying the child is going to Harvard," Kaufman said during a recent interview in San Francisco.
Autism is drawing increased attention across the nation as the number of children diagnosed with the disorder rises rapidly. It was the subject of a recent cover story in Newsweek magazine, and California lawmakers have decided to pump $34 million into the M.I.N.D. Institute at UC Davis to attempt to unravel the mystery behind the disorder.
Kaufman, now 27, visited the Bay Area recently for a speaking engagement. During an interview at a San Francisco hotel, he showed no signs of the disorder that plagued his early years.
Today, he is a gregarious, bright young man with a wide-ranging vocabulary, a friendly manner and a quick smile. He perched on the edge of his chair, locked his eyes on an interviewer and tried to explain why autistic children find isolation so appealing.
"This world is very difficult to understand and cope with on a lot of levels, so they create a world for themselves that makes sense," he said.
As a young boy, Kaufman spent hours twirling plates and flapping his hands in front of his face. He didn't talk, rarely looked at others and seemed unresponsive to human contact of any kind.
These are all classic signs of autism. Autistic children often have little or no speech, can't interact socially and have a rigid need for routine.
By age 2 or 3, they often are profoundly isolated, failing to make eye contact or respond to others. Some appear to have a hypersensitivity to sound or touch.
Kaufman, who remembers little about his early years, "emerged" from autism at the age of 5 after his parents spent three and a half years working with him 12 hours a day, seven days a week, huddled in a bathroom away from distractions.
He now lives in Massachusetts and helps his parents run The Son-Rise Program® at the Option Institute, where they teach the techniques his parents developed to other mothers and fathers.
After doctors diagnosed their son, Raun, 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?"
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 co-founder 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."
Siegel, whose clinic at UC San Francisco has seen nearly 2,500 autistic children, said the approach used by the Kaufmans is beneficial for some children but not all. For example, it can be useful for those with behavior problems who understand speech, she said.
But for children with little or no language ability, she added, "I think this approach is not useful because they are not ready to benefit from information that is delivered to them via language."
Others find it valuable, however. Siegel noted that the mother of one of her patients participated in an Option Institute program and her child showed marked improvement.
"It has something to say for how to treat children with autism," Siegel said. "It certainly was a forerunner of a lot of what is going on today in the treatment of autism."
Iversen, who traveled to Georgia to observe a family using the Option Institute techniques, noted that different programs work for different children. Parents should try out various approaches to figure out what is effective for their child.
"Any approach that takes intensive one-on-one intervention will make an incredible difference," Iversen said.
"What Option does that is really nice is they acknowledge the sensory problem and lower the sensory input for the child (by working in a small room with minimal distractions)," she added. "They're removing all the stimulus except the human stimulus."
Some critics say the Kaufmans are providing false hope to parents. They note that most experts consider autism to be caused by a malfunction in the brain. As a result, they say, it is unrealistic to think that a child can "emerge" from autism.
But Samahria Kaufman notes that stroke victims can recondition their brains to compensate for parts that aren't working properly. She believes autistic children can do the same thing.
Raun Kaufman, meanwhile, bristles at the notion that there can be false hope when it comes to autism.
"I never hear people use the term false pessimism, yet that is what many parents are handed," he said. "Of course, we cannot predict in advance all the things a child will do. But hoping leads to action. Without hope, there is no action. And without action, you can't help any of these children."