Twelve years ago, Portia Iversen became a mother for the first time. But her excitement turned to anxiety when she discovered that something was wrong with her son, Dov. "He was about one year old," she says. "I came in and sat across of him at his high chair and I called his name and he didn't seem to respond. He seemed to be staring at something."
It took Iversen and her husband another year to finally get their son diagnosed. "The doctor said, 'It sounds like autism," she recalls. "' My husband said, 'What do we do about it?' The doctor said, 'Hold on to each other, cry and get on with your lives.'"
While not a fatal condition, autism was long considered an untreatable disorder. A
complex and poorly understood brain disorder that inhibits a person's ability to communicate and develop social relationships, autism has no known cause, no known cure, and no standard treatment. It was believed autistic children would never develop the social skills to interact with other people, and might be best served in a mental institution.
But Dov's parents refused to take that course. They learned about neuroscience, lobbied politicians and started the Cure Autism Now Foundation (CAN), today one of the world's largest non-governmental funding sources for autism research. In the process, Iversen says, they learned much about the disorder.
"Autism was described first in early 1940s, and for 50 years, scientists had the wrong idea," she says. "They thought it was an emotional or psychological disorder, caused by bad parenting. I looked up autism and discovered autism is a spectrum disorder ranging from more mild to very severe. And on the severe end of the spectrum are children who can't take care of themselves. They have severe motor problem. They can't speak." Iversen says her son falls in the most severe end of the spectrum.
Like parents of the more than one million other people with autism in the United States, Iversen and her husband tried everything: therapists, special schools and intensive coaching, but nothing seemed to be working for Dov, who was then 9 years old.
"This is when I heard about a boy named Tito who lived in India," she says. "He had a mother named Soma. I heard that this boy, who was 11, although he appeared to be extremely autistic like my son, he was very intelligent and he could read. He could hand write and he could type. I eventually tracked them down on the Internet. I convinced our research foundation to support them coming over here, to the United States, so that we could meet Tito."
Like Portia Iversen, Soma Mukhopadhyay was also given ineffective advice by the doctor who diagnosed Tito with autism at age of 3. "I was asked to keep him busy, but I found that keeping him busy was not the solution," Mukhpadhyay says. "He knew how to arrange things. I knew that he was intelligent, but I had to focus his intelligence towards learning."
As Iversen explains, one day, Mukhpadhyay noticed that her son was staring at a calendar. "Very slowly she taught Tito to point by doing it with her hand, showing him how to do it with his hand," Iversen says. "This way she got him to point to numbers and eventually taught him the numbers up to 100. She then realized, she could do the same thing with the alphabet."
From teaching her son the alphabet, Mukhpadhyay moved on to phonics, a technique that teaches [her autistic son]. Through words and typing he began to communicate with the world."
Tito, who is now 17 years old, has composed eloquent poetry and kept insightful journals, disproving the accepted wisdom that autistic people have limited language and communication skills.
When U.S. scientists interviewed and tested Tito, Iversen says, they had a unique opportunity to learn about autism firsthand, directly from someone with the disorder. "For example, why did he do these rocking motions, which many autistic people do," she says.
Iversen says Tito responded by writing "I can't feel my body.'" She says that made him feel anxious, "and when he rocked, he could feel his body and this calmed him down."
Tito also explained why autistic people ususally look away when someone asks them specifically to look at them. "He said he couldn't see or hear at the same time when he is concentrating on something," Iversen says. Looking at the speaker, she explains, "will prevent him from understanding your words."
Tito provided insight about autism that was previously unknown to researchers.
Even after meeting Tito, Iversen says, she was still skeptical that Mukhopadhyay's method would be effective with Dov. But it was, and Dov has started to connect with his family.
Iversen says the first question she asked her son was: "what have you been doing all these years?" "He typed, 'listening,'" she says.
"My children communicate with him by pointing at letters on the board or multiple choice." Then, Iversen says, Dov types back the answer.
Iversen says, her sisters, who never got to know Dov, now have a strong relationship with their nephew.
Since 2001, Halo Center. She says, she focuses less on the disorder than on the individual. "We try to work with the child. It's educating and mainstreaming the child, because everybody has a potential
and through learning, through expressing you become a productive member in the society."
The story of Dov and Tito - and their mothers - is told in Portia Iversen's book, Strange Son: Two Mothers, Two Sons and The Quest to Unlock the Hidden World of Autism. "The book sold for a movie," she says. "It's supposed to have Julia Roberts on it. I hope it happens because I feel like that would be the biggest way we could get this message out there."
Iversen says a diagnosis of autism does not condemn a child to a life of isolation. She hopes getting this message out will not only help parents better understand autism, but will also raise awareness of the disorder -- and money to fund research for a cure.