Can Tito Mukhopadhyay help researchers cure
autism? (CBS)
Tito Mukhopadhyay works with his mother
Soma. (CBS)
Dr. Mike Merzenich has been studying Tito for
more than a year. (CBS)
(CBS) 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.
ALL INFORMATION, DATA, AND
MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS
OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.
"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"