The mother of an autistic child finds hope and help unlocking her son's "hidden mind"
Seattle Times staff reporter
Imagine the daily heartbreak. Your autistic child doesn't talk or even give a clue what he thinks. You tell him you love him; he gives only a 1,000-yard stare in return. Learning is elusive, incremental at best, and doesn't seem to keep pace with the bizarre and persistent hand-flapping, rocking and droning that define him.
So imagine that one day you find a way to "hear" what he knows and thinks. Imagine that voice happens because of another mute autistic boy, about the same age as your son and living in India. He shows the same classic autistic symptoms, but thanks to his dynamic mother, he has learned to write, type and produce powerful poetry and complex thoughts.
You imagine what testing someone like this Indian boy, so distant and odd, but brilliant, too, can do to scientific assumptions of the pervasive developmental disorder. Imagine discovering through him that your 10-year-old child, while trapped, had been listening and learning on his own all those silent years.
At first, Portia Iversen, author of "Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism" (Riverhead, 416 pp., $24.95), regarded all this as a miracle. Now she calls it realization — of how little is understood about the mystery of autism and the tragedy of assumptions.
"It shook up my world, my thinking, everything I thought I knew," Iversen says from her Los Angeles home.
One in every 166 children is diagnosed with some severity of autism. Numerous books get published each month, but "Strange Son," published in December, is a parent's compelling search to decode the mystery and reach her son and others like him. It exudes a mother's unconditional love, but also hard-boiled attention to the neurological questions. It speaks volumes about how little we understand the disorder and how little patience we have with the word "potential."
Iversen, an Emmy-winning art director, curtailed her career to help her son, Dov, and, along with her husband, Hollywood producer Jonathan Shestack, created a nonprofit research foundation, Cure Autism Now.
While attending a conference in 1999, when Dov was 7, a British psychologist known for her skepticism of anything not tried-and-true told Iversen about 11-year-old Tito Mukhopadhyay. The child had been diagnosed as severely autistic yet scored an IQ of 185. Through her foundation, Iversen brought Tito and his mother, Soma, to the United States so he could be tested and studied.
Soma combined a staggering amount of time and patience to teach Tito, and devised her own aggressive system that allowed him to first point to letters and eventually write and type. When she taught Tito and later other autistic children, she directed their attention to a board holding information in pictures, letters or words, and exhorted them, "C'mon, c'mon, you can do it!"
Soma calls it the "rapid prompting method" and explains the key is "staying ahead of the stim." The "stim" is those repetitive behaviors autistic people use to soothe and occupy themselves. (Details on Soma's methods can be found on and linked from a Web site Iversen created, www.strangeson.com).
Soma constantly read to and taught her son, even during those times that he stared off in the corner and gyrated. When Iversen asked her how she knew her son was even listening, Soma replied, "Because he never left the room." In other words, he, and likely others like him, absorbs information in unconsidered ways. In fact, Tito told U.S. researchers and Iversen that looking and listening at the same time overloads his senses.
But could information like this and Soma's method help others? Soma agreed to work with Dov. It didn't take long before the boy was independently pointing to letters that spelled answers to parents' questions and showed a shocking amount of knowledge.
His father asked, "What have you been doing all these years?" Dov spelled, "listening."
Iversen teaches Dov and a few other kids, and her foundation is merging with Autism Speaks (www.autismspeaks.org). She wrote the book and set up the related Web site to expose parents to the method and spur scientists to shed assumptions about people with autism (can't learn, have mental retardation, pay no attention, etc.) and devise smarter approaches to research and testing.
Iversen also wants Soma's approach to be studied and tested so it can gain scientific acceptance. She knows parents trying to help their children have encountered false promise in the past.
"I am certain that if I had not met Soma and Tito, I never would have found Dov," Iversen says. "And what we learned from Tito tells us that our understanding of autism is all wrong."
Tito could very well be "one-in-a-million" in terms of his intelligence, but the clear-eyed hope that rings through this account is that he was not one-in-a-million in the ability to communicate and learn.
Iversen acknowledges obstacles ahead. Dov is still way behind and must overcome behavioral problems central to autism so he can participate in the world around him. He can spell out his thinking, but not at the speed of conversation.
"To discover a hidden mind, especially in your own child," she says, "is at once shocking, deeply disturbing and joyous."
Richard Seven: 206-464-2241 or firstname.lastname@example.org
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