A Boy, a Mother and a Rare Map of Autism's World: NY Times

A Boy, a Mother and a Rare Map of Autism's World: NY Times

[By Sandra Blakeslee In The New York Times.] http://www.nytimes.com/2002/11/19/health/19TITO.html

Los Angeles - 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, hearand feel touch. At his left, Tito's mother, Soma, watches quietly. Tito, who is 14, 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."

Tito has severe autism, a disorder that occurs when the brain mysteriously fails to develop normally in infancy and early childhood. Born and raised in India, Tito speaks English with a huge vocabulary. His articulation is poor, and he is often hard to understand. But he writeseloquently and independently, on pads or his laptop, about what it feelslike 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 at 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 detailand 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 Dr. 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 at 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 match sticks," said Soma, as she prefers to be called. "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.

Around then, a method called facilitated communication, in which a parent or teacher holds the wrist of an autistic person as he or she taps messages on computer keys, had been widely discredited. Critics said teachers were prompting autistic people to respond through a kind of Ouija board effect.

"I was desperate to show people that Tito's poems came from him and not me," Soma said. "I put myself in other people's shoes and knew we needed genuine proof that he could write independently."

The mother also read Tito stories and books - Aesop's fables, Thomas Hardy novels and the complete works of 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," he wrote while living in India, "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. 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, Dr. Merzenich said, that normal children develop in their first few years.

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 at San Diego found that autistic people had mixed-up brain maps.

Although a normal person, for example, has a well-defined brain area that specializes in face recognition, some autistic people have face-recognition areas in parts of the brain like 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 the University of California at 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," for example, 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.

Ms. Iversen, whose 10-year-old son, Dov, is severely autistic, notes that maps for face recognition form early. "I smile, you smile, and maps are formed," she said. But if you do not have a faithful mental map of your own face and body, she said, you cannot read the expression on someone else's face.

The inability to interact socially is a core problem in autism. People who lack normal body maps may not be able to build consistent mental models of the world, Dr. 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 Dr. 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 Dr. Merzenich. "I need time to prepare my eyes. Otherwise the world is chaos."

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

Other autistic people like Dr. Temple Grandin, a professor at Colorado State who earned a doctorate in animal science, specializes in vision.

"When I talk about anything new, I have to look at the picture in my mind, and then language narrates it like a slide show." Dr. Grandin said when she met Tito in Dr. Merzenich's lab, where they were tested side by side in September.

For Tito, willing his body to do things is a particular problem, Soma said. "If he's sitting on the couch and I ask him to go to the kitchen, he cannot do it," she added. "But if he hears me open a bag of cookies, he moves like a gazelle on pure impulse."

That is another sign that Tito's brain is disconnected, Dr. Merzenich said. Children gradually develop higher circuits to control their impulses as the frontal lobes mature and connect to circuits that developed earlier. Each stage rests on earlier circuitry; if that is abnormal, later-to-develop regions may never be organized correctly.

Still, Tito's behavior and writings dispel a popular notion that autistic children do not feel empathy, Ms. Iversen said. Tito has feelings and notices emotions, she said, but he can be stoic about his disorder. When a mother at a large autism meeting asked Tito for his advice to parents, Tito replied simply, "Believe in your children."

Most experts say they believe that abnormalities in several genes contribute to developing autism, along with environmental factors that have yet to be fully identified. Many parents say the first symptoms, like the lack of eye contact, as in Tito's case, do not appear for about 18 months. This accident of timing has led some to associate vaccines given at that age with the onset of autism. But it is equally plausible, many experts say, that the symptoms appear at that time because that is when the brain naturally reaches new levels of complexity. If primary sensory regions like the auditory cortex have prenatal defects, entire pathways of subsequent brain organization would not form properly.

Researchers have measured swarms of electrical discharges in the primary hearing regions of autistic children while they sleep. Such epilepsy-like activity may affect the way the brain organizes its circuitry in childhood.

Others note that the brains of autistic children are larger than average and that the brain's basic building blocks, called cortical columns, contain many more cells than normal and make excess connections to other cells. Such hyperconnectivity may cause autistic children to become overwhelmed by details because their minds are never free to integrate the whole picture. Moreover, their brains are wired in such a way that they are prone to associate things that do not normally go together.

Tito says that at 4, he was looking at a cloud when he heard someone talking about bananas. It took him years to realize that bananas and clouds were different.

As researchers continue to study Tito, Soma works with a small number of children in Los Angeles to see whether her teaching methods can help others. Unlike many educators who try to slow things for autistic children,Soma demands rapid responses, which she says prevent the child's brain from being distracted.

It is too soon to tell whether she will succeed. But parents like Ms. Iversen have been impressed. When her son first used the spelling board, Dovbroke his muteness, asking for a navy blue blazer and algebra lessons. When she asked him what he had been doing all those years when he couldn't communicate, he pointed out letters to spell "listening."

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