Good article: Boy opens never-before-seen 'window into auti

Boy opens never-before-seen ‘window into autism’

Patient gives researchers a clearer insight into disorder through his eloquent writing

By Sandra Blakeslee
NEW YORK TIMES NEWS SERVICE

November 19, 2002

LOS ANGELES – Experts on autism are getting a better view of the condition by studying a 14-year-old boy who has severe autism, but can explain his disorder in great detail.

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 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.”

Severe autism occurs when the brain mysteriously fails to develop normally in infancy and early childhood.

Tito, who was born and raised in India, speaks English with a huge vocabulary. His articulation is poor, and he often is 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 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 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 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 matchsticks,” Soma said. “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.

She also read Tito stories and books – Aesop’s fables, Thomas Hardy novels and the complete works of Charles 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, 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,” he wrote while living in India. “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 that children develop in their first few years, Merzenich said. 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 San Diego found that autistic people had mixed-up brain maps.

For example, although a normal person has a well-defined brain area that specializes in face recognition, some autistic people have face-recognition areas in parts of the brain such as 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 UC 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,” 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.

People who lack normal body maps may not be able to build consistent mental models of the world, 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 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 Merzenich. “I need time to prepare my eyes. Otherwise the world is chaos.”

Tito said 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 is painful, Tito said. He scans the world with his peripheral vision and rarely looks directly at anything.

Still, Tito’s behavior and writings dispel a popular notion that autistic children do not feel empathy, Iversen said.

Tito has feelings and notices emotions, but he can be stoic about his disorder, she said. When a mother at a large autism meeting asked Tito for his advice to parents, Tito simply said, “Believe in your children.”

Copyright 2002 Union-Tribune Publishing Co.