 Tito with his mother |
THEY
call him the Rosetta stone for autism. They say he is doing what
doctors once thought impossible, telling others what it feels like
to be trapped in an autistic body and mind. His name is Rajarshi
‘Tito’ Mukhopadhyay. He is 13, a poet and author.
|
The actress has bought the movie rights to Portia Iverson’s touching tale of two mothers – one from a mansion in Los Angeles, the other from a small flat in Bangalore – who team up to seek help for their severely autistic sons. Roberts may even star in the movie adaptation of the yet-to-be published Strange Son as one of the mothers.
If she does, it will be another leap in a remarkable story that began in Bangalore with one woman and her determination to change the life of her son diagnosed with severe autism. The disease robs a person of social, communicative and cognitive skills and has no known cure.
Like all autistic children, Tito 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 “normal” – preferring to remain aloof and refusing to talk. At age 3, doctors told Soma Mukhopadhyay (an engineer) her son was autistic.
Where others would have despaired, Soma decided that wasn’t the
answer. In methods that many call controversial, she began teaching
Tito day and night, ceaselessly prodding him, refusing to let his mind
rest or stray. When Tito indicated he would rather crawl up in a corner,
she would forcibly take him out for daily walks, and talk about the
things around them. After some time, she started tying a pencil to his
hand and showing him how to write, often refusing to let him eat until
he could do so. In his book, Tito says she often beat him up.
Soma never doubted her son could learn, and it may have made all the
difference. Along the way, she made up other methods, much like most
mothers of autistic children in India are forced to do for lack of expert
care. With Tito’s father away working in another city, Soma played
music to him, read him books - Aesop’s fables, Dickens, Shakespeare
– and then demanded he write stories of his own.
Tito responded. Two years ago, his first book, Beyond the Silence, was
published, compiled of his writings at eight and 11. While the 13-year-old’s
communicative skills remain undeveloped – he finds it difficult
to talk and hear at the same time, or pick up a pad and pen till his
mother urges him to – all this changes when Tito writes. “
I need to write,” the boy wrote recently. “It has become
part of me. I am waiting to get famous.”
|
The
book was to ensure that. It caught the attention of Portia Iverson,
a screenwriter, Emmy Award-wining art director and the mother of
a 10-year-old autistic son, Dov. She and her husband, Hollywood
producer Jon Shestack (Air Force One), are behind Cure Autism Now
(CAN), the largest private supporter of autism research in the USA.
CAN sponsored Soma and Tito’s move to Los Angeles in July
2001 and continues to support them. |
 Portia Iverson |
The approach Soma used with her son also got a name – Rapid Prompting
Method, or RPM. Since then the mother and son have been at the center
of constant media and scientific attention. Few come away unimpressed.
Scientists who have tested Tito say he is for real, and defies all the
assumptions made so far about autism.
Mary Barua, the founder of the New Delhi-based Action for Autism who has interacted with Tito, calls him “a fascinating boy with an amazing mind”. According to her, he shows that many people with autism have very bright minds trapped inside their bodies.
In other words, Iverson says, Tito answers the questions of many parents like herself who want to know what their children are going through but can’t. Questions like why don’t they make eye contact, why do they rock? “When I was 4 or 5 years old,” Tito wrote once, “I hardly realized I had a body except when I was hungry or when I realized I was standing under the shower and my body got wet. I needed constant movement, which made me get the feeling of my body…Every movement is a proof that I exist. I exist because I can move.” Scientists say autistics have difficulty framing a body map.
Tito has also told them people with autism choose one sensory channel,
and that he chose hearing. He attends to the sounds of language and to
oral information, which may help explain his gift for poetry. Vision is
painful for him. Another time, he wrote: “The shapes come first
and then the color. If it moves, I have to start over again.”
While researchers continue to study Tito, more and more parents are approaching
Soma to help them with their autistic children. Reports say they have
been thrilled by the results. Iverson gives the example of her own son
Dov, who has started speaking full sentences since Soma took him under
her wings. Iverson says when she asked her son recently what he was doing
all these years when he wouldn’t respond to her, Dov pointed out
letters to spell: “Listening”.
Tito wouldn’t be surprised. Asked once what he thought the biggest
misperception that people had of autism was, he said: “That they
don’t have any understanding.”
On Tito’s homepage (www.cureautismnow.org/tito/index.html),
a small poem elaborates more:
“A
world of such can’t it be
With acceptance and love, not sympathy
My story could touch if your heart
My ‘hope’ would get that precious reward.”
Indian Express, New Delhi, 29th September 2003. Story by Shalini
Langer