Unlike other children his age, Raun Kaufman at 18 months appeared remote and withdrawn. He made no sounds or gestures to express his likes and dislikes. His fixed stare made his parents, Barry and Suzi Kaufman, feel transparent.
Raun, the Kaufmans became convinced, was autistic, suffering from what is defined as a severely incapacitating developmental disability that typically appears in the first three years of life.
The Kaufmans made an extra-ordinary effort-spending almost 10,000 hours over a three-year period-to bring Raun back from his isolation. Their success story has been told in a book by Barry Kaufman, "Son-Rise," and made into a two-hour movie the Kaufmans helped write, "Son-Rise: A Miracle of Love" that airs at 9 tonight on Channel 4.
It is a portrayal of autism that the Washington-based National Society for Autistic Children finds realistic and deeply moving, but one with which it also has serious reservations. The society has let NBC know that it believes the movie will "cause many parents of children with autism deep and unnecessary feelings of guilt."
Barry Kaufman, who has his own reservations about the national society, said from his home in Roslyn, N.Y. that he fears controversy will intrude on what he sees as a basic message of the movie-that there is "something beautiful any place you turn." Though the society defines autism as a "lifelong" disability, in which the symptoms are caused by physical disorders of the brain, Kaufman insists his son "is cured."
There are an estimated 110,000 to 150,000 autistic persons of all ages in the United States. In the Washington area, the number is about 1,500. Autism is four times more common in boys than girls, according to society statistics, and from 95 to 98 percent of autistic adults are now in institutions.
"Autistic children are characterized by their profound inability to establish affectionate and meaningful relationships," writes the Research Resources Reporter of the National Institutes of Health. "Even at home with their parents, they fail to make 'senseh out of their environment-fail to reciprocate love and affection.
"It has been called the 'aloneness syndrome,'" the Reporter says in its November '78 issue, "and just as there is no known cause there is no known cure for autism."
To try to reach inside their son's isolated world, the Kaufmans developed a technique of imitating his actions, showing him great affection and teaching him everyday activities by breaking them down into segments he could manage.
When Raun spun plates for hours at a time, the Kaufmans gathered pots and plates to spin with him. "From early morning to early evening we stayed with him continually until he went to sleep," Kaufman writes. "The hours became days. The days became weeks."
For some time the "classes" moved into the bathroom because-with its one-color tile, lack of windows and only three fixtures-it provided a distraction-free environment. Over the weeks and months, Raun began to respond. He made eye contact, and then would recognize other family members and enjoy being held. In time he spoke his first word "wa" for water and in the days that followed dozens more.
Raun is now 6 and in the first grade. His father says he is perhaps even more sophisticated in some aspects than his classmates. He's a "loving, engaging, verbal, superbright, super-alert child," he boasts.
"What the Kaufmans did for Raun was certainly educationally sound: intensive but gentle intervention on a one-to-one basis," writes Mary Akerley, parent of an autistic son and the society's director of chapter and national affairs.
"What is objectionable is their insistence that he is now 'normal' because they 'accepted him,' implying that we all could have done likewise if we had accepted our kids and shown them that we did by imitating their behavior.
"Parents have rights, too," she says, "and no mother should be expected to spend 75 hours a week in the bathroom with her handicapped child, even is she is willing to do so."
And what about the child who is not as passive as Raun was? asks Frank Warren, the society's director of information and referral who also has an autistic son. "With active Kids," Warren says, "you don't climb a roof or sniff gas with them." Or join in "head-banging and fecessmearing sessions," as one parent put it.
Despite the society's objections to the movie, Warren says it gives "an accurate portrayal of a child with autism." Importantly, he says, "Son-Rise" lets the public know that autistic children can be helped and that early intervention is crucial.
Barry Kaufmanhs feeling about the national society are strong, and he goes so far as to call them "detrimental." He feels the society has not looked on his book favorably since it was published.
Kaufman, 36, a burly man with long hair and full beard who looks by his own description like one of his Belgian herding dogs, sold a communications marketing firm to spend more time with Raun. A student of Zen, Taoism and Yoga, he now teaches a "loving lifestyle" he calls The Option Process to help not only autistic children, but people of all ages with problems. He is writing his fourth book.
Suzi Kaufman, also 36, resembles a subdued Goldie Hawn with her long, curly blond hair. Once a professional actress, she is now a sculptor.
A principal objection Barry Kaufman has to the national society is that it supports the use of behavior modification to treat autism. Behavior modification to Kaufman means treatment with chemicals, drug therapy and electric-shock. The society responds that the movie gives "a grossly unfair view" of behavior modification. "Nobody is in favor of what we see in the movie," Warren says.
"A parent who has just enrolled his child in behavior modification is going to think he has done something wrong-but he didn't," adds Akerley.
The Research Resources Reporter quotes Dr. Donald J. Cohen, associate director of the Children's Clinical Center of Yale's medical school: "The major advance in recent years has been the use of behavior modification . . .
"Procedures involve specifying what behavior is to be modified, such as learning how to establish eye contact and then using rewards such as candy or praise to encourage the desired behavior."
But, acknowledges Warren, there are times when punishment must be used, such as when a child repeatedly does something that is self-destructive.
Would Kaufman join a non-passive child in smearing feces on the wall? "I don't know what I'd do. Every self-destructive child is different. But I wouldn't rule it out and I wouldn't characterize it as a joke."
The Kaufmans appeared last month with Rep. Peter A. Peyser (D-N.Y.) before a House subcommittee testifying for full funding of educational programs for pre-school handicapped children. In this effort, they joined the national society.Peyser said the Kaufmans present "a dramatic demonstration of the potential of early treatment of the handicapped."
Full funding for at least 220,000 pre-school handicapped children under Public Law 94-142 would cost $66 million, but the Carter administration's proposed budget calls for $15 million, a $2-million cut from this year's budget, Peyser said. This means that while states are entitled to a $300 assessment per child, the actual dollars available are about $68 per child. CAPTION: Picture, Barry and Suzi Kaufman with son Raun, 6, the family on whom tonight's movie "Son-Rise" is based.