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- September 23, 1996
- Vol. 46
- No. 13
The Enemy Within
Frustrated by Helpless Doctors, the Parents of An Autistic Child Fight Back Against His Mysterious Illness
A neurological developmental disorder, autism has no known cure or cause, though it is thought to be genetically based. Says Dr. Pauline Filipek, a professor of pediatrics at the University of California at Irvine: "The symptoms range from mental retardation, lack of awareness of people, mutism and repetitive or self-injurious behavior to normal or above-normal intelligence, poor or inappropriate communication skills, and fewer obsessive-compulsive or ritualistic behaviors." (Only a tiny percentage of autistic people possess the inexplicable mathematical talents displayed by Dustin Hoffman's character in the 1988 film Rain Man or are gifted musically or artistically or demonstrate astonishing feats of memory.) Afflicting nearly 20 people in every 10,000, autism is more prevalent than multiple sclerosis, cystic fibrosis or Down syndrome.
Now 4, Dov "is very limited, "says his father. "He can barely do two or three actions in a row. He can't talk. He can't tell us what he wants. "Determined to help their son—and others—Shestack and Iversen set up CAN (Cure Autism Now). Based in Los Angeles, the 10-month-old organization raises money for biological research and, through mailings, conferences and a Web site (http://www.canfoundation.org), serves as an information exchange for families affected by autism. With a membership numbering 4,500 families, it has raised $200,000, funded seven pilot studies and started a collaborative gene bank to help develop treatments and find a cure. "Every day there are advances in neurology, genetics and molecular biology," says Shestack. "It's our task to focus these new techniques on autism. Once there is research with good results, agencies like the National Institutes for Health will fund further research."
On a recent afternoon, Jonathan, 37, and Portia, 42—now also the parents of 2½-year-old Miriam—sat in the living room of their Spanish-style Los Angeles home and spoke with correspondent Karen Brailsford about their son.
Portia: Dov was born by cesarean section on April 28, 1992. He was a big, 9-pound baby with a full head of hair. He seemed fine, but we weren't thinking about him being anything but fine.
Jonathan: We were so happy to have him. But as he grew older, he didn't put on weight. We lived by the scale.
Portia: It was going from having our dream come true to barely holding on to it. We knew there was something wrong with Dov biochemically. We had a kid with severe gastrointestinal problems, bad diarrhea and lethargy. There were days I'd spend all day in the doctor's office. He'd say, "I hate to send you to the emergency room because they're not going to know what's wrong. I don't know." Nobody knew.
Jonathan: Eventually, Dov got better. When he was 4 months old, he started to gain weight, he sat up on time, he walked on time, he banged the kitchen cabinets. Then, when he was 11 months old, things didn't seem quite right. I was obsessively reading child-development books, and he didn't seem to be moving on to the next step. Portia would say, "Boys develop a little slower than girls. You're just being overly competitive."
Portia: I remember Jon coming home one night and standing in the doorway. Dov was three feet away with his back turned. Jon said, "Hi, Dov, Daddy's home." There was no response. I said to Jon, "Dov seems to be disappearing into a world of his own." I'd look at him in his high chair, and he'd look past me. He'd have staring spells, and they became more and more frequent until they just seemed to blend together. He was vanishing.
Jonathan: We were just starting to be worried about Dov when Portia got pregnant again. Had we known Dov was autistic, we might not have had Miriam. There's a greater chance for us than for other parents that we could have another autistic child. Only now that she's almost 3 do I say, "Okay, it's not going to happen to her." But I watched her like a hawk. If she spaced out in front of the television or seemed absentminded the way any kid might, my heart would race.
Portia: Finally, when Dov was 13 months old, I sheepishly told our pediatrician that Jon was worried about his development. After examining him, the doctor said I should call a specialist. My adrenaline started racing. I asked, "What kind of specialist? What do you think is wrong?" He said, "Sometimes the wiring's just not right. You know, a personality disorder." It was Memorial Day, and we couldn't reach anybody except this one guy. He couldn't see us, but over the phone he said, "Gee, it sounds like autism. You'll just have to hold each other and cry as this unfolds."
Jonathan: Two weeks later, on the advice of a psychologist friend, we began taking Dov to a child-development specialist. She gave us good advice about getting down on the floor and in Dov's face and trying to force interaction, but she never said the word "autism." She was afraid to give the diagnosis. We lost six months when we could have been doing a lot of the aggressive intervention we began later.
In February 1993 we went to UCLA to meet with autism experts. Although we had read everything and figured out what it was, we spent six hours doing diagnostic tests and being interviewed. Then they said, "Well, we agree. He is autistic." Neither of us ever knew anyone with autism.
Portia: I remember sitting in Dov's room at night and crying. I knew that he was being sucked into another world without my being able to stop it. The most terrifying thing was that there was no expert out there who knew anything more than we did.
Jonathan: Our doctors didn't tell us to do anything. The old-liners say, "We don't want to get the parents' hopes up." Why shouldn't we get our hopes up? The only response is to be active. If you're not, you've given up.
We started a lot of therapies for Dov, including sensory integration (which helps regulate touch, balance and other sensory relationships), speech therapy, occupational therapy (which teaches specific tasks) and behavior modification (which reduces learning into, the smallest components), drilling them over and over and rewarding the child for getting it right. Though we made progress—after a year, Dov learned to nod yes and no and to complete a simple task—it was clear that this wasn't enough. Dov needed medical treatment. We assumed the medical community was going to provide answers. They're doing research, aren't they? Then we realized there was no "they," no concerted, funded effort. So we thought, what can we do to help Dov? We came up with CAN.
Portia: I took a class in immunology and went on to molecular cell biology. It became clear that though autism is a complex disorder, affecting multiple systems, it is a medical problem, not a psychological disorder that will one day have a medical solution.
Jonathan: I took courses in nonprofit management, fund-raising and grant writing. But Portia really took over. She got involved with autism groups on the Internet, including parents who later became the core group of CAN. It was like those stories of mothers who lift up the car because the baby is caught underneath.
Portia: We didn't want to just stand by while our child was very ill,
Jonathan: Every night I go to bed hoping I'll wake to find my son well. And then in the morning I hear Dov making his sweet little noises in the next room, and I know what we have to do. Dov can barely point to something and indicate what he wants, yet when I look at him and he smiles at me, it seems clear that he's in there—a person trapped by his disability.
- Karen Brailsford.
January 31, 2015
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