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According to Suzanne Wright, Autism Speaks’ stated goal is to find “the cause and cure for autism,” which brings us back to the question, “What are we really dealing with?” The preponderance of research evidence, says Ami Klin, is that “there is a very strong genetic contribution to it. We know there’s a very high concordance rate in twins. We also know that in many families, autism has been present for generations.” At the same time, for others an afflicted child is the first in his family, and thus may represent a genetic anomaly. “The vast majority of genetic info we have explains autism only in one individual or one family. So we don’t have a genetic test that can predict it.”
Others take such information as a sign that environmental factors, either inside the womb or postdelivery, may also play a role. One such is Trumbull’s Kim Stagliano, the mother of three daughters with autism and managing editor of the Web blog Age of Autism (ageofautism.com), who believes that her girls’ disabilities may not be neurological, but biomedical. She claims to have seen great improvement in all three after putting them on a gluten-free, casein (dairy)-free diet. “We’ve seen this avalanche of childen with all kinds of disabilities: asthma, food allergies, diabetes—our kids are chronically sick,” she points out. Could the “bad stuff” that’s part of our daily lives—pollution, chemical food additives, global warming, you name it—be contributors to autism?
Then there’s the never-ending vaccination debate. In addition to the well-chronicled controversy over thimerosal, a mercury-based preservative that some still suspect is linked to autism, there’s the fact that kids are getting more routine vaccinations than ever—10 immunizations by the age of 6, via 30 shots, and in some cases infants may get up to five shots per doctor visit. Some vaccines are bundled, such as the MMR (measles, mumps and rubella) and the DIP/TET (diptheria, tetanus and whooping cough). Are we overloading tiny immune systems in the quest to eradicate acute illnesses? Katie Wright-Hildebrand thinks so. Her son Christian had terrible reactions to his vaccines. “At 2 months old, he had seven. I brought him home and he was screaming, like someone was stabbing him. My husband and I walked him up and down the street till midnight, trying to calm him down.” Successive vaccinations left the little boy with chronic diarrhea, up to 10 incidents a day. Recently, the 7-year-old was diagnosed with Crohn’s disease.
Klin points out that research has yet to find that any environmental factor plays a significant role in autism. This brings us to the whole question of “epidemic.” In the 1960s, autism was considered a rare condition, perhaps four in 10,000. How does one explain the jump to one in 150 in the last several years? Klin credits better diagnostic procedures, broadened DSM categories, and improved reporting by more aware clinicians. It’s not, he says, that the CDC is reporting a rampant growth, or incidence of new cases—just that the medical field is doing a much better job of accounting for the prevalence of the disability (the cases that already exist). Thus, he believes, to call autism “epidemic”—as if it were an ever-spreading virus—is misleading.
Whatever autism is, however it’s caused, others feel these debates are irrelevant. “They’re not going to get the NIH to spend the money it should be spending, they’re not going to get insurance companies to pay for therapies, and they’re certainly not going to get our families what they need to get through the day,” says Sara Reed. “They’re not helpful. Our focus should be help now, hope for the future.”