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Shattering the Shell: Autism Breakthrough?
It was, Portia Iversen suggests, as if someone had entered her baby's room and kidnapped his mind, soul and personality, leaving only his bewildered body behind. The perpetrator? Autism.
Dov, the eldest child of Emmy Award-winning art director/writer Portia Iversen and Philadelphia native/film producer Jonathan Shestack, had "disappeared" at about 18 months old, going from a healthy child to a tiny boy without connection to the world.
In their frantic search for answers, the couple, who live in Los Angeles, ultimately received a diagnosis of their child's autism from UCLA, and were essentially told to "go home, hold each other and cry."
"It was the most devastating thing that has ever happened in my life," said Iversen, who left her career in 1995 to launch Cure Autism Now, a nonprofit research organization, with her husband.
"It was like a force was driving me, something I couldn't resist even if I tried. All parents have it -- basically you will do anything to save your child.
"Life doesn't make sense anymore when this happens to your child," she continued. "It's so profoundly unacceptable, so illogical, so unbearable."
In 1999, at a conference she had organized at Rutgers University in New Brunswick, N.J., Iversen learned from a British psychologist of a severely autistic 11-year-old child, this one in India, who was nonverbal, had the classic autism traits, but also had an I.Q. of 185.
"Once I heard of Tito Mukhopadhyay, I tried to track him down as if my life depended on it. If someone who acted like my son could have intelligence, then maybe there was a chance that Dov could, too."
When the Shestacks finally located Tito and his mother, Soma, they arranged to have the pair come to the United States. It was the mother who had created a system that allowed Tito to learn to point to letters, then to write and type. The amazing bottom line: Tito could now communicate nonverbally, staying ahead of the "stim," the repetitive behavior autistic people often use to soothe and occupy themselves.
And ironically, on Sept. 12, 2001, one day after that horrific time in this nation's history, Iversen watched in awe as her son Dov answered the question, "What is a galaxy?" through the system of pointing and typing. Dov, who had been working with Soma for less than six weeks, spelled out, "A group of stars."
It was, in Iversen's own words, "breathtaking."
"It meant that he was not retarded -- that he'd been in there all these years," said his mother.
Another breakthrough: Last week, the U.S. Centers for Disease Control and Prevention issued a report offering data about autism's rate in 14 states, including Pennsylvania and New Jersey, confirming that autism is more common than formerly thought.
"It's ironic," noted Iversen, "I remember when we started [CAN], we had to struggle hard to get anyone to believe that autism was affecting one in 500 kids."
Now, the CDC reported that 1 in 150 had it.
The report "tells us that fewer autistic children are mentally retarded than anyone previously thought. For years, people cited the statistic that 80 percent of people with autism were mentally retarded. But according to this new CDC report, the figure could be as low as 32 percent."
After the initial Mukhopadhyay breakthrough, the parents learned their son had felt, in his words, "close to God" when he'd been taken to Rosh Hashanah services. Dov also added, "I hope this new year is a call for all like me to find some hope."
His family was dumbstruck.
Since that time, Mukhopdhyat method has been used successfully with several other severely autistic children, including those in the small class where Dov, now 14, is currently home-schooled.
Meanwhile, Iversen, Shestack and other researchers had been learning from Tito, who had been communicating profound thoughts, and even writing incredible poetry, for years. For three years, as her own son began slowly and painstakingly to reveal his "hidden intelligence," Iversen was studying Tito and Dov, and shooting documentary footage.
The result is Strange Son: Two Mothers, Two Sons and the Quest to Unlock the Hidden World of Autism, a book that chronicles the commitment of two mothers from opposite worlds with one common denominator: the love of their autistic sons.
Film rights to Iversen's work have been optioned by Revolution Studios for Julia Roberts, according to the author, who added that the script is wonderful.
Readers follow the e-mail exchanges between Tito and the author, and can actually peek into the mind of an autistic person.
Iversen will discuss her book on Thursday, Feb. 22, at 7:30 p.m., at Borders bookstore, 1 S. Broad St., in Center City.
For more information, go to: www.strangeson.com.