September 30, 2003
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.
This boy’s story, from Bangalore to Los Angeles, and his mother who has single-handedly taken him that far may now become a Hollywood movie starring Julia Roberts.
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 such as other babies. But by the time he was 18 months old, he was showing signs 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-winning 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 US.
CAN sponsored Soma and Tito’s move to Los Angeles in July 2001 and continues to support them. The approach Soma used with her son also got a name—Rapid Prompting Method, or RAM. Since then the mother and son have been at the centre 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 do autistic children flap hands, why don’t they make eye contact, why do they rock?
‘‘When I was 4 or 5 years old,’’ Tito wrote once, ‘‘I hardly realised I had a body except when I was hungry or when I realised 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.’’ Scentists 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, for him, is painful.
Another time, he wrote: ‘‘The shapes come first and then the colour. 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 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, 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.’’
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