Wednesday, January 15, 2003
For years, autism defied any cure. The prognosis for this neurological disorder was grim: there was no hope that severely autistic children would ever be able to function normally or to learn. In more than half the cases, there was no hope that they would ever be able to communicate at all.
But one woman is trying to change that. Not only has she taught her severely autistic son to communicate, she has also taught a small group of children – whose parents had all but given up on them – how to break through the silence of autism. Vicki Mabrey reports on this astonishing work.
“It’s like sometime between your baby’s first and second birthday, somebody sneaks into your house late at night and they steal his mind and his personality and they leave his body behind,” says Jon Shestak. He and his wife, Portia Iversen, have an autistic son, Dov.
Like most children with autism, Dov appeared to be developing normally, a happy baby, learning to speak. Then at around 18 months he lost the few words he had, stopped answering to his name, and disappeared into the frightening world of autism.
“I felt helpless to help him. And yet, every minute, every day, I saw him getting further and further out of my grasp and there was no expert out there to stop it,” says Portia.
Although there are varying degrees of autism, the couple was told their son had the most severe form. They were told he would never speak, and probably was mentally retarded. Doctors said there was nothing they could do for him except give him constant care – and get on with their lives.
Now 10, the only sounds Dov makes are unintelligible. His behavior is filled with uncontrollable movements called “stimming,” or self-stimulation.
“The worst times, you know, were when he was in pain of some kind and we couldn’t figure out, you know, was it a toothache, was it a stomach ache? Did he have appendicitis? Did he break a bone? And he couldn’t tell us,” she says.
They were told there was no cure. They discovered there were very few scientists even doing autism research. So they formed a research foundation called Cure Autism Now, CAN.
In seven years, their foundation has raised more than $20 million – making it the largest private supporter of autism research in the country. It has increased the number of autism researchers from about a dozen to several hundred, including some working to identify the genes responsible for the disorder.
But their biggest breakthrough didn’t come in the lab. It came from a 14-year-old boy their foundation brought over from India. This child is challenging every assumption about autism, turning the world of Portia and Jon and thousands of other parents like them upside down.
His name is Tito Mukhopadhyay. Like Dov, he has the most severe form of autism. He, too, is almost mute and has little control over his body.
But unlike Dov, and thousands of other autistic children, Tito is doing what doctors and researchers once thought impossible: he can somehow write eloquently and independently about what it’s like to be trapped in an autistic body.
Through their foundation, Jon and Portia brought Tito and his mother to the United States, to give scientists, and themselves, a glimpse into the autistic mind.
“I was able to ask Tito things I always wanted to ask my own son, Dov,” says Portia. “Why do you flap? Why do you rock? Why can’t you look me in the eyes? You know, and Tito could answer all those questions.”
Scientists say they’ve never seen anyone like Tito before. By definition, people with severe autism have trouble with language – a notion that Tito shatters every time he puts pen to paper.
Dr. Mike Merzenich has been studying Tito for more than a year. A neuroscientist at the University of California at San Francisco, he says he believes Tito is not only authentic, but also miraculous. At first, though, he was skeptical.
“There can be little question in the writing and typing behaviors of Tito that he’s providing the answers, and that the answers are coming from his brain,” Merzenich says.
If Tito is a miracle of autism, the miracle worker is his mother Soma, who gave up a career in chemistry to devote her life to teaching her son - even though doctors in India said he would never be able to learn.
“At first, they told us he was mentally retarded because he wasn’t doing anything. He wasn’t doing what a 3-year-old child should do. He did not respond. He did not do anything,” says Soma. She was simply told to keep him busy.
As a young child, she noticed he was staring at calendars; so she started teaching him numbers and letters. When he wouldn’t hold a pencil, she used a rubber band to tie one to his finger and taught him to draw lines, and eventually to write.
If her method looks simple, parents of other severely autistic children will tell you that at one time or another, they, too, tried to get their child to type or communicate - with no success.
But Soma's method requires tenacity. For the past 11 years, this tireless taskmaster has spent every waking moment talking and teaching, constantly prodding, to keep Tito stimulated, and his mind on track.
Her determination – and her assumptions about Tito – may have made all the difference. She never doubted that he could learn. So she fed him a healthy diet of knowledge – from Shakespeare to geometry to music.
Tito says that if his mother hadn’t pushed him, he would have been a “vegetable.” Merzenich agrees.
Though Tito seems to have escaped that fate through his writing, he remains severely autistic. He can’t pick up the pad and pencil to write without his mother’s constant prodding and urging. But when Tito does write, it is with astonishing insight, especially for a boy of 14
Take for example, these lines from a poem he wrote: “I have fancied a little dream and the world is left unseen… with the light of your eyes… through the darkness of the night… I have held that little dream… beyond my world beyond all scenes.”
Says Merzenich: “Tito is a beautiful example of the possible. Here we have a boy that largely through the empirical interaction of this boy with his mother, a way has been found into his ability, into his spirit.”
Scientists will soon find out if other autistic kids can be taught as Tito was. For the past year, Soma’s been testing her methods on a small group of children at the Carousel school in Los Angeles. Among the students is Dov.
Like Tito, these 9- and 10-year-olds are severely autistic. Few can speak. Until recently, teachers had no idea if anything was actually getting through.
In the space of a year, kids who were being taught on a kindergarten level are now being taught math, social studies and science like fourth graders.
“I had honestly never seen anything like this in my life,” says Karen Spratt, who was their teacher. She says she was skeptical when Soma first came to the school. “Soma really did everything that I was told not to do as a teacher. For instance, she talked constantly. In my training, it was that you give basic directions and wait for a response, and not to verbalize too much because it could be distracting.”
Instead of being distracting, Soma’s “Rapid Prompting Method,” as she calls it, seems to keep the children’s attention focused long enough for them to communicate. She ignores their erratic movements and wandering eyes, and focuses instead on the mind locked inside.
Soma is sure that her method works. She offers some proof. Dov was one of her first students – since it was his parents, Portia and Jon, whose foundation brought Soma to the United States.
His parents were astonished at his progress: From a boy who six weeks earlier couldn’t even tie his shoes suddenly came full sentences, complex thoughts and words spelled correctly.
“The best way I could put this is it seemed like I was seeing the kid that had disappeared seven years before. Suddenly it wasn’t just the one word or gesture I was able to get. It was whole sentences. And ideas,” says Portia. “I was like a kid in a candy shop. I didn’t know where to start. You know? What’s your favorite color? What do you want to be when you grow up? I mean, you know, all the things you ask your child over the years. Every day, there was a whole new set of things I was finding out.”
They learned that Dov is interested in religion and history and is a surprisingly good mathematician.
Dov says that all those years, when people thought he was lost in his own world, he was actually listening to everything around him.
Although Soma’s method has not yet been studied scientifically, Merzenich is one of many researchers who think it should be taken seriously: “I think it’s almost certain that this method can be used with many, many autistic children, and the initial indication from the studies in Los Angeles is that it might apply even to the substantial majority of these children.”
Dov says he is much happier since he began going to school. Why? He writes his answer: “I can tell others my feelings.”
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