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Rachel's family took her to see one of the country's top autism experts when she was 2 1/2 . She received her first diagnosis: "pervasive developmental disorder not otherwise specified," a catchall term. The family felt adrift. Rachel was placing an extraordinary strain on everyone. There were financial worries.
"Rachel was more work than all the other kids combined," Peter Hotez said. The illness brought most normal family activity to a halt. "We didn't go out to dinner for a decade."
As Rachel missed developmental milestone after developmental milestone, Ann Hotez did what tens of thousands of other mothers would do in her situation: She blamed herself. She started wondering whether she had done something during her pregnancy with Rachel: Was it the tuna fish she had eaten?
The link between tuna and autism, moreover, was part of a larger controversy. Many people were worried about tuna because of fears that mercury in fish might cause autism. There was another large source of fear regarding mercury: Many children's vaccines contained a preservative called thimerosal, a mercury derivative.
Ann told her husband what she was reading about the controversy. Many advocates believed that increased numbers of vaccinations in early childhood were linked to the rapidly growing number of autism cases in the United States. Some advocates believed the problem was in the vaccines themselves, while others thought the problem was in the thimerosal and cited evidence that showed mercury was highly neurotoxic.
Peter Hotez responded to his wife's fears in the only way he knew how. He consulted studies, research, data. He told her about Minamata disease in Japan, where kids had been exposed to high levels of mercury. There is strong evidence that mercury exposure in the womb can cause limb deformities and gait abnormalities. In older children, it can cause brain abnormalities. To a layperson, that might all sound like a clear-cut connection with autism, but to Peter Hotez, the difference between autism and an abnormality caused by a toxin such as mercury was like the difference between a computer virus that shuts down all telecommunications in a city and a hurricane. A city deprived of its telecommunications can be just as paralyzed as a city that has suffered a natural disaster, but the two kinds of destruction leave different trails.
"This is not something that can be caused by a toxin after birth. This is a deeply patterned mis-wiring in the brain, and this is not how a toxin works," Peter Hotez told his wife. "It can only be a genetic condition that affects the whole neurobiology of development."
Ann pointed out that this was not what she was reading on the Internet. "She said, 'Why does no one say that?' and I said, 'I don't know why they don't say that,' " Peter Hotez recalled. "As a society, we are quick to want to point fingers and find blame."
As the controversy raged and some families stopped vaccinating children, federal authorities saw that thimerosal was removed from all routinely given childhood vaccines by about 2002 as a safety precaution. Health officials were under intense pressure from politicians, who were under intense pressure from constituents. Whom did leaders and doctors care about, angry families demanded: disabled children or the medical establishment? Lawsuits piled up, making their way to a vaccine court in Washington that is currently hearing cases exploring the theories.
The government recently conceded the case involving Hannah Poling of Athens, Ga. Shortly after receiving a battery of vaccinations, Poling's parents said, she went from being an alert toddler to a child with symptoms that began to look increasingly like autism. Poling, now 9 years old, is said to have had an underlying mitochondrial disorder, which can increase the dangers posed by various common childhood infections. Contrary to some people's concerns that children with mitochondrial disorders should not receive vaccinations, many doctors say it is especially important that such children be vaccinated to head off infections, which have the potential to trigger serious mental and physical damage. (At press time, national experts were convening a meeting in Indianapolis to examine links between autism, mitochondrial disorders and vaccinations.)
Federal officials and the scientific establishment have steadily maintained that the decision to concede the Poling case does not in any way suggest that vaccines cause autism. They insist that no scientific evidence exists to prove such a link.