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Article: Young Man Describes Living With Autism

By Elaine Cassel

Fourteen-year-old Toto Mukhopadhyay, born and raised in India, has difficulty speaking in English, though he has a huge vocabulary. But he writes easily and eloquently about what it is like to be locked up inside an autistic mind.Researchers are taking advantage of this rare opportunity to learn about autism.

Tito appeared to develop normally until about the age of 18 months. Then he began to show the almost-certain signs of autism—not talking and distancing himself from people in social setting. Cure Autism Now, a Los Angeles research foundation that brought Tito and his mother, Soma, to the United States in 2001, pays the family’s living expenses and allows experts to study Tito. Researchers say that it is the first time a severely autistic person has been able to explain what he or she is experiencing. (Other higher functioning people with autism, like Temple Grandin, have spoken about their disorder.) In addition to conducting neurological tests on Tito (though he cannot remain still enough yet for brain imaging), researchers place him in settings that test his intelligence, cognition, and memory. Tito communicates on his own, without assistance, through a keypad with a voice synthesizer. He easily answers scientists’ questions and articulates his feelings and experiences.

What are scientists learning about autism from Tito?
  • Tito seems disconnected from his body. He explains that the twirling, flipping, and spinning he engages in help him realize that he has a body.
  • He has a difficult time identifying parts of his body. For instance, he knows that he has a nose, but when asked to point to it, he may point to his ear. Neuroscientists suggest that his brain’s map for knowing his body and where it is in relationship to space and other body parts seems to be “scrambled.”
  • He feels out of touch with himself, in addition to a sense of bodily detachment. He says that feeling his body move is proof of his existence.
  • Tito has difficulty integrating sensations from different senses. He says he can either concentrate on what he sees or hears or smells, but not all three of them at the same time. For instance, tests conducted on him show that if seated in front of a computer screen and presented with a series of beeps followed by flashes of light, Tito cannot perceive the light unless it is separated a full three seconds from sound. He says that he needs time “to prepare” his ears and then he needs time to prepare his eyes. Otherwise, he says experiences “chaos.” He is amazed that others can simultaneously see and hear and smell. This may help explain why social interaction is difficult for autistic people, for without sensory integration it is impossible to develop a working model of the world—people and situations, for instance.
  • Tito, like Temple Grandin, says that he cannot really look at things directly. He uses his peripheral vision to scan rather than gaze or focus his eyes.
  • Tito has difficulty with controlling and executing motor activities. He may respond instinctively to the sound of food being served by running to the table, but if told to “come to the table,” it takes him time to respond.
  • Tito writes poetry. Its emotional content dispels the notion that autistic people lack affect or empathy. However, he tries to maintain a stoic attitude about his disorder.
  • Tito says that when two things are associated at one time, it is a difficult to dissociate one object from another at a later time. For instance, he said recalls hearing someone talking about bananas when he was looking at a cloud. For a long time, he thought bananas and clouds always go together.
Researchers cannot yet study Tito’s brain directly, but they are learning more than they ever had about how Tito perceives the world and himself. Perhaps when Tito can tolerate sophisticated brain imaging techniques, scientists can integrate current theories about the brains of autistic people with Tito’s experiences.

In addition to learning about autism from Tito, Tito’s mother is involved in learning how to teach autistic children, employing some of the techniques she intuitively developed on her own as she tried to harness Tito’s skills as a young child and teach him what he could learn (like colors, smells, and sounds from local markets) in a way in which he could perceive it.

Tito may become as famous as the eighteenth century Viktor, the so-called “wild boy of Aveyron” (France), and Genie, the twentieth century “wild child” from California, children who have taught us much about developmental psychology.Perhaps what scientists learn about Tito will also lend insight into finding a cause—and a cure—for this fascinating, but often debilitating, developmental disorder.
Elaine Cassel, Marymount University and Lord Fairfax Community College