The Following is a success story of a kid and his devoted mother to help her
son live a life that he is eligible to live.

please pass on

Thanks to Newyork times..

Kennedy


A Boy, a Mother and a Rare Map of Autism's World

November 19, 2002
By SANDRA BLAKESLEE






LOS ANGELES - Tito Mukhopadhyay sits in a darkened
laboratory, pointing at flashes of light on a computer
screen. On his right is a neuroscientist, one of several
who are testing Tito's ability to see, hear and feel touch.
At his left, Tito's mother, Soma, watches quietly.

Tito, who is 14, often stops the testing with bursts of
activity. His body rocks rhythmically. He stands and spins.
He makes loud smacking noises. His arms fly in the air as
if yanked by a puppeteer. His fingers flutter.

Everyone waits.

Tito reaches for a yellow pad and writes
to explain his behavior: "I am calming myself. My senses
are so disconnected, I lose my body. So I flap. If I don't
do this, I feel scattered and anxious."

Tito has severe autism, a disorder that occurs when the
brain mysteriously fails to develop normally in infancy and
early childhood.

Born and raised in India, Tito speaks English with a huge
vocabulary. His articulation is poor, and he is often hard
to understand. But he writes eloquently and independently,
on pads or his laptop, about what it feels like to be
locked inside an autistic body and mind.

"Tito is a window into autism such as the world has never
seen," said Portia Iversen, a co-founder of Cure Autism
Now, a Los Angeles research foundation that brought Tito
and Soma to the United States in July 2001 and continues to
support them.

Autism experts are studying him, amazed to discover, for
what they say is the first time, a severely autistic person
who can explain his disorder. "Tito is for real," said Dr.
Michael Merzenich, a neuroscientist at the University of
California at San Francisco Medical School, who has run
extensive tests on Tito. "He unhesitatingly responds to
factual questions about books that he has read or about
experiences that he has had in detail and in high
fidelity."

"I've seen Tito sit in front of an audience of scientists
and take questions from the floor," said Dr. Matthew
Belmonte, a neuroscientist and an autism expert at
Cambridge University. "He taps out intelligent, witty
answers on a laptop with a voice synthesizer. No one is
touching him. He communicates on his own."

Nor is Tito a savant, an autistic person with a single
extraordinary talent like the mathematically gifted
character in the movie "Rain Man."

"Tito thinks and feels and has opinions like all the rest
of us," said Dr. Samuel Smithyman, a psychologist in Los
Angeles who is Tito's personal analyst. "He defies the
assumptions we have about autism."

Tito was assessed with well-validated diagnostic tests and
meets all the criteria for autism, said Dr. Sarah Spence, a
pediatric neurologist at the University of California at
Los Angeles.

Like many autistic children, Tito appeared to develop
normally. He learned to sit and walk like other babies. But
by the time he was 18 months old, he was showing signs that
he was not like other toddlers, especially in the way he
distanced himself from social settings and did not talk.

After his severe autism was diagnosed at age 3, Soma
decided to educate him anyway, using methods she would make
up as she went along.

"I saw that Tito had very good memory with roads, position
of objects in the room, and also he would make complex
patterns with match sticks," said Soma, as she prefers to
be called. "I just wanted to divert his interests toward
communication and learning."

For 10 years, she and Tito lived in small apartments in
Mysore and Bangalore, where she taught him, day and night.
Although Tito wanted to hide in a corner and watch a
ceiling fan, Soma took him for daily walks amid the colors,
smells and sounds of local markets.

Tito's father, who lived and worked in a distant city,
visited occasionally.

Soma first taught Tito to recognize letters and sounds on
an alphabet board, choosing English over more difficult
Indian dialects. Then she tied a pencil in his hand and
showed him how to make each letter, often refusing to let
him eat until he could do so.

Around then, a method called facilitated communication, in
which a parent or teacher holds the wrist of an autistic
person as he or she taps messages on computer keys, had
been widely discredited. Critics said teachers were
prompting autistic people to respond through a kind of
Ouija board effect.

"I was desperate to show people that Tito's poems came from
him and not me," Soma said. "I put myself in other people's
shoes and knew we needed genuine proof that he could write
independently."

The mother also read Tito stories and books - Aesop's
fables, Thomas Hardy novels and the complete works of
Dickens and Shakespeare - and demanded that he write his
own stories in return. Tito continues to write poetry and
essays every day. His first book, "Beyond the Silence," was
published two years ago in Britain by the National Autistic
Society.

"I need to write," he said recently, scrawling the words on
a yellow pad. "It has become part of me. I am waiting to
get famous."

Since traveling to the United States, Tito has visited six
laboratories for neurological testing. Because he cannot
hold still long enough for brain imaging, he cannot offer
researchers pictures of his mind in action. Instead, he
gives them clues about his mental states in poems and
essays that can then be explored in specially created
tests.

"When I was 4 or 5 years old," he wrote while living in
India, "I hardly realized that I had a body except when I
was hungry or when I realized that I was standing under the
shower and my body got wet. I needed constant movement,
which made me get the feeling of my body. The movement can
be of a rotating type or just flapping of my hands. Every
movement is a proof that I exist. I exist because I can
move."

Tito seems to lack a sense of his own body, the kind of
internal map, Dr. Merzenich said, that normal children
develop in their first few years. The maps involve brain
regions that specialize in the sense of touch and movement
and are widely connected to other areas, and they are
highly dynamic throughout life, changing in response to
everyday experience.

By imaging the brains of higher functioning autistic people
who can stay still in scanners, researchers in the
laboratory of Dr. Eric Courchesne at the University of
California at San Diego found that autistic people had
mixed-up brain maps.

Although a normal person, for example, has a well-defined
brain area that specializes in face recognition, some
autistic people have face-recognition areas in parts of the
brain like the frontal lobes, where no one had dreamed they
could be laid down. The same is true of maps that help plan
movements. This means body maps are formed in autistic
children, but they may be scrambled differently in each
person.

In imaging experiments starting at the University of
California at San Francisco, Dr. David McGonigle, a
radiologist, is exploring the hypothesis that some autistic
children may have scrambled body maps. Many cannot identify
parts of their bodies in a mirror. Even if they know
"nose," for example, when asked to point at the nose they
may put a finger to an ear. They also tend to be clumsy.
With eyes closed while standing, they wobble and stagger.

Ms. Iversen, whose 10-year-old son, Dov, is severely
autistic, notes that maps for face recognition form early.
"I smile, you smile, and maps are formed," she said. But if
you do not have a faithful mental map of your own face and
body, she said, you cannot read the expression on someone
else's face.

The inability to interact socially is a core problem in
autism. People who lack normal body maps may not be able to
build consistent mental models of the world, Dr. Belmonte
said. They may not be able to integrate sights, sounds,
smells, touches and tastes. This is what Tito is talking
about when he writes that he cannot perceive the world with
more than one sense at a time.

"I can concentrate either at what I am seeing or what I am
hearing or what I am smelling," he wrote, not long after he
began meeting neurologists. "It felt nothing unnatural to
me until I realized that others could simultaneously see
and hear and smell."

In Dr. Merzenich's lab, Tito has had extensive testing to
explore his unusual perception. Sitting in a darkened room,
he listens to beeps followed by flashes of light on a
computer screen.

Most people can sense the sound and the light, even when
they are separated by only a fraction of a second. But
unless the light follows the sound by a full three seconds
- an eternity for most brains - Tito never sees it. "I need
time to prepare my ears," he told Dr. Merzenich. "I need
time to prepare my eyes. Otherwise the world is chaos."

Tito says that people with autism, at least those who are
like him, choose one sensory channel. He chose hearing.
Most of the time, Tito attends to the sounds of language
and to oral information, which may help explain his gift
for poetry. Vision, Tito said, is painful. He scans the
world with his peripheral vision and rarely looks directly
at anything.

Other autistic people like Dr. Temple Grandin, a professor
at Colorado State who earned a doctorate in animal science,
specializes in vision. "When I talk about anything new, I
have to look at the picture in my mind, and then language
narrates it like a slide show." Dr. Grandin said when she
met Tito in Dr. Merzenich's lab, where they were tested
side by side in September.

For Tito, willing his body to do things is a particular
problem, Soma said. "If he's sitting on the couch and I ask
him to go to the kitchen, he cannot do it," she added. "But
if he hears me open a bag of cookies, he moves like a
gazelle on pure impulse."

That is another sign that Tito's brain is disconnected, Dr.
Merzenich said. Children gradually develop higher circuits
to control their impulses as the frontal lobes mature and
connect to circuits that developed earlier. Each stage
rests on earlier circuitry; if that is abnormal,
later-to-develop regions may never be organized correctly.

Still, Tito's behavior and writings dispel a popular
notion that autistic children do not feel empathy, Ms.
Iversen said. Tito has feelings and notices emotions, she
said, but he can be stoic about his disorder. When a mother
at a large autism meeting asked Tito for his advice to
parents, Tito replied simply, "Believe in your children."

Most experts say they believe that abnormalities in several
genes contribute to developing autism, along with
environmental factors that have yet to be fully identified.
Many parents say the first symptoms, like the lack of eye
contact, as in Tito's case, do not appear for about 18
months.

This accident of timing has led some to associate vaccines
given at that age with the onset of autism. But it is
equally plausible, many experts say, that the symptoms
appear at that time because that is when the brain
naturally reaches new levels of complexity. If primary
sensory regions like the auditory cortex have prenatal
defects, entire pathways of subsequent brain organization
would not form properly.

Researchers have measured swarms of electrical discharges
in the primary hearing regions of autistic children while
they sleep. Such epilepsy-like activity may affect the way
the brain organizes its circuitry in childhood.

Others note that the brains of autistic children are larger
than average and that the brain's basic building blocks,
called cortical columns, contain many more cells than
normal and make excess connections to other cells.

Such hyperconnectivity may cause autistic children to
become overwhelmed by details because their minds are never
free to integrate the whole picture. Moreover, their brains
are wired in such a way that they are prone to associate
things that do not normally go together.

Tito says that at 4, he was looking at a cloud when he
heard someone talking about bananas. It took him years to
realize that bananas and clouds were different.

As researchers continue to study Tito, Soma works with a
small number of children in Los Angeles to see whether her
teaching methods can help others.

Unlike many educators who try to slow things for autistic
children, Soma demands rapid responses, which she says
prevent the child's brain from being distracted.

It is too soon to tell whether she will succeed. But
parents like Ms. Iversen have been impressed. When her son
first used the spelling board, Dov broke his muteness,
asking for a navy blue blazer and algebra lessons. When she
asked him what he had been doing all those years when he
couldn't communicate, he pointed out letters to spell
"listening."

http://www.nytimes.com/2002/11/19/health/19TITO.html?ex=1043798399&ei=1&en=4
ab40cd5fd39d844



Copyright 2002 The New York Times Company