on Autism - interesting show last night - thought you might want to take a peek!
Breaking The Silence
http://www.cbsnews.com/stories/2003/01/14/60II/main536416.shtml CBS News Online
Breaking The Silence
Jan. 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.
"Its like sometime between your babys 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
couldnt figure out, you know, was it a toothache, was it a stomach ache?
Did he have appendicitis? Did he break a bone? And he couldnt 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 didnt 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 its 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 cant you look me in the
eyes? You know, and Tito could answer all those questions."
Scientists say theyve 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 hes 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 wasnt doing
anything. He wasnt 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 wouldnt 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 hadnt 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 cant pick up the pad and pencil to write without his
mothers 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, Somas 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, Somas "Rapid Prompting Method," as she calls
it, seems to keep the childrens 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 couldnt 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 wasnt 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 didnt know where to start. You know?
Whats 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 Somas method has not yet been studied scientifically, Merzenich is
one of many researchers who think it should be taken seriously: "I think
its 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."