The Lesson of Tito

Posted on May 23, 2004 in Neurology Reading

I believe in absurdism. It is absurd to exist. Just see why we are alive, why we are dead. What is the use of the universe?

  –Tito Mukhopadhyay

Tito’s comment sounds like the angst of many teenagers who spiral off into gothic fantasies about our ultimate morbid destinies. His, however, is a unique perspective, coming as it does from a young man with severe autism who has, through his own persistance and that of his mother, learned to write.

An article in the June 2004 Scientific American suggests that Tito’s experience may help us understand autism as we never have before. Doctors rely on answers their patients provide to aid in diagnosis. What happens when the patient cannot communicate? Someone else — in the case of autistic children, the parents — step in and provide answers. Their perspective and desire for control of the syndrome plus their belief in unlimited personal accountability contributes to a misapprehension of what goes on inside the head of the sufferer:

Wanting to talk, Tito once stood before a mirror pleading for his mouth to move. “All his image did was stare back,” he wrote. Parents often take an autistic’s unresponsiveness to be stubbornness; Tito’s writings dispel that notion. He has trouble moving his muscles at will, and now he speaks in barely intelligible grunts that his mother must often translate. He “saw himself as a hand or a leg and would turn around to assemble his parts to the whole,” Tito explains of another typical activity, rotation. Spinning his hands helps him to become more aware of bodily sensations….

Tito…routinely fails to hear and see someone at the same time and so avoids eye contact — a defining characteristic of autism….if Tito was presented with a bright red flash and a simultaneous voice saying ‘blue’, he responded ‘I saw blue’ or ‘I am confused.’ He turned out to have a hierarchy of senses: hearing overrode vision, and both extinguished touch. Sometimes he could feel nothing at all with his fingers. Such startling effects as he displayed had hitherto remained hidden, for a low-functioning autistic does not normally cooperate with experimenters.

All the interfering signals lead to a ‘fragmented world perceived through isolated sense organs,’ Tito has written. He comprehends the world by reading or when his mother reads aloud to him — physics, biology, poetry. ‘It is because of my learning of books, that I could tell that the environment was made of trees and air and nonliving, this and that,’ he wrote.

Tito’s experience suggests a very different approach than we have been taking with regards to autism. His mother — a chemist and an educator — taught him to write by tying a pencil to his hand and guided it until he knew how to make the letters himself. This was necessary, she says, because specialists dismissed Tito’s ability to add and subtract using a calendar as emblematic of the Clever Hans Syndrome: they thought she was consciously or unconsciously prompting him. No one can call Tito’s writings prompted.

Soma Mukhopadhyay now helps other severely autistic children:

….using her so-called rapid-prompting method….She communicates using whichever sensory channel is open in a child, and he or she responds by pointing to letters or pictures. Often she enables the pointing by touching a hand or shoulder (according to Tito touching allows a child to feel the body part and so control it), and she cuts off stray thoughts. Unfortunately, [Richard] Mills [of the National Autism Society in London] warns, autism is bedeviled by claims of treatment that eventually evaporate, and Soma’s method has yet to be scientifically validated.

Yet there is hope. When Anne Sullivan reached the deaf and dumb Helen Keller, she, too, was accused of being more of a puppet-master than a genuine teacher. Other blind people, such as Diane Schurr, report bizarre handling in schools reputed to be for helping them:

I was sent to a state school for the blind, but I flunked first grade because Braille just didn’t make any sense to me. Words were a weird concept. I remember being hit and slapped. And you act all that in. All rage is anger that is acted in, bottled in for so long that it just pops out….I can say the word see. I can speak the language of the sighted….I was able to go from the state school for the blind to regular public school from the age of 11 until my senior year in high school. And then I decided on my own to go back into the school for the blind. Now I sing jazz.

By many reports, autistic children live in a similar world to that faced by the blind. Tito demonstrates to autistic children and their parents that avenues for communication exist — if we are patient. It remains difficult for Tito to function in complex social situations — as it must have been for Helen Keller in her time. Still, if we follow the example given by his partnership with his mother, what we learn is the importance of understanding and outreach. By himself, Tito could not survive. It took a community of at least two to bring him into this world. The moral that Kimber and others have preached remains valid: not only must we teach the autistic child to function in this world, but we must teach the rest of the world to respect their difference. Ours is not to eradicate but to compromise and aid them in compensating.