January 16, 2005
ABC News - Good Morning America Segment
Dr. Tim Johnson

Imagine your child locked behind a wall of his own words, helpless to communicate, unable to look into your eyes and frantic with odd behaviors fueled by frustration.

That is the reality for the parents of children with autism. Half a million children in the United States are currently diagnosed with autism, for which there is no known cause or cure. The numbers are inexplicably growing.

Half or more of those afflicted with autism will never speak, leaving desperate parents to wonder if, deep inside, there is a child they will ever know. But thanks to one unusual little boy from India, some parents are getting a rare glimpse into the isolated world of autism.

Deep in the heart of India, in a two-room house in the city of Bangalore, the unimaginable took place. Tito Mukhopadhyay, a severely autistic 11-year-old boy, was writing poetry. His language skills proved that, despite his odd behavior, his cognitive mind was alive.

“With the help of my imagination, I can go to places that do not exist and they are like beautiful dreams,” Tito wrote in his book of poetry. “But it is a world full of improbability racing toward uncertainty.”

Mysterious Rise in Autism
In 1992 there were 250,000 cases of autism in the United States. By 2002, that number had nearly doubled, rising to 425,000. In California, the number of cases of autism has jumped a staggering 273 percent in 10 years.

No one really knows why.

“If you asked a hundred specialists about what could contribute to the increase, you’d get at least 30 or 40 answers,” said Dr. Mike Merzenich, a neuroscientist at the University of California in San Francisco.

The average level of intelligence among autistic individuals is unknown because their impaired communication skills make testing of cognitive abilities often nearly impossible.

Theories about what causes autism range from childhood vaccines to delayed development in utero. A Danish study released last year studied 50,000 children given vaccines and 50,000 not vaccinated, and the autism rates were about the same. Still, some cling to the theory that vaccines have something to do with autism.

But as the experts debate, autistic children remain at the heart of it all, which made Tito’s case all the more compelling.

Tito’s mother, Soma Mukhopadhyay, had somehow found a way to communicate with her autistic son. She forced him to focus by gently prodding him, sometimes raising her voice to keep him on track whenever she asked him a question and required an answer.

And Tito responded. First by pointing and then, slowly, by writing out sentences. The sentences grew into elegant observations about life as a child locked in the body of an autistic.

“The thoughts are bigger than I can express,” Tito wrote.. “Every move that I make shows how trapped I feel under the continuous happenings.”

Thousands of Titos?
His case raises the question: Are there more children like him?

“There might be thousands of children like Tito, and one of our challenges is to determine whether anything can be done about that and whether there are more children that can be in a sense awakened like Tito,” Merzenich said.

Tito’s poetry caught the attention of world-renowned autism experts, who wanted to study him. The boy was one of the few people with autism able to describe his inner experience.

Halfway across the world in Los Angeles, another mother, Portia Iversen, was doing everything she could to give her son Dov a chance.

“There’s certain intensity and vigilance you feel when you’re the parent of an autistic child,” Iversen said. “A vigilance to help them break through and break out of the disorder.”

Like Tito, Dov was severely autistic. But Iversen had refused to accept her son’s fate and had started a foundation, Cure Autism Now, to fund research into the condition that ruled Dov’s life. And it was that foundation that brought Soma and Tito to the United States.

“I was just filled with questions to ask Tito about all these behaviors,” Iversen said. “So that I could understand my son Dov better.”

The Unexpected Happens
During Soma and Tito’s visit something unexpected happened. Soma taught Dov the method she used with Tito, getting him to focus, point and spell out entire sentences. For the first time, Dov could tell his own mother, in rich detail, everything she wanted to know.

“This is not a cure for autism, it’s a tool,” Iversen said. “It will probably not work for everybody the way it has for Tito, or for Dov, but we have to try and determine if it can.”

For Iversen, the changes have been astonishing.

“Every day was a new excitement,” Iverson said. “Making up for all these years of ‘what do you want to be when you grow up? What’s your favorite subject in school? Do you like school? What’s your favorite color? How do you like having brothers and sisters?,'” she said.

Soma and Iversen are at work on a manual that aims to teach other parents what they call the “rapid prompting method.” Now Soma has begun to teach the method at Dov’s school, working with nine other autistic students.

When Iversen asked Dov what being able to communicate has given him, he spelled out an answer:

“I am understood.”

Merzenich says Soma and Mukhopadhyay’s efforts should be examined closely by the medical world. “So we need to look at the strategy more widely and determine whether or not it is a valid strategy for a large number of children,” Merzenich said. “That’s still unresolved . But The initial observations are extremely hopeful.”