Desperate Measures

updated 09/27/2004 AT 01:00 AM EDT

originally published 09/27/2004 AT 01:00 AM EDT

Mike and Lynne Koufakis say their son Jake came into the world a healthy, happy child. Babbling and smiling as a newborn, he seemed to be developing normally. But at 18 months, not long after he received his routine childhood vaccinations, he started to change. "He began slowing down," says Lynne, 45, a stay-at-home mom in Manhasset, N.Y. "He lost eye contact and began withdrawing. He was a space cadet, out of it."

Now 8, Jake Koufakis has been diagnosed with autism—the second child in his family to have the disorder—and Mike and Lynne Koufakis believe the vaccinations are partly to blame. Their youngest, Jenna, 5, shows no signs of autism, but her frightened parents have stopped vaccinating her altogether.

The Koufakises have joined a growing number of parents who suspect thimerosal—a mercury-based preservative once commonly used in childhood vaccines—may be a factor in an apparent explosion in autism cases in recent years. Experts have long said there is no scientific data to support such fears, but a study published in June by Columbia University has reignited the debate. The report—presented to a congressional subcommittee Sept. 8-shows thimerosal triggered autism-like symptoms in a strain of mice genetically susceptible to autoimmune disorders (as are many autistic children). While far from conclusive, activists say the study offers some evidence that outside factors like high mercury levels, not genetics alone, may play a part in the rising autism diagnoses. "Parents I know believe there is a connection between vaccines and autism," says Lee Grossman, chairman of the Autism Society of America. "It's shocking to find a lifelong disability at such high levels. If it were cancer, people would be all over that."

Commonly used for more than 70 years, thimerosal has been phased out of all childhood vaccines since 1999; now it is present only in tiny amounts in some inoculations. The ingredient remains in most flu shots, which the Centers for Disease Control and Prevention now recommends for children between 6 and 23 months (see box). That fact has fueled reluctance to immunize children—to the frustration of doctors. "Vaccines prevent potentially devastating illness," says Dr. Gary Freed, professor of pediatrics at the University of Michigan Medical School, who cared for a child who died of complications from measles because he hadn't been immunized. "His parents will never forgive themselves—their child died of a disease that could have been prevented." As for the Columbia research, Dr. Alfred Berg, who participated in a lengthy Institute of Medicine study that rejected any connection between vaccines and autism, says, "It's a leap to translate what happened to the mice into the autistic behavior of children."

That doesn't matter to parents like Lyn and Tommy Redwood of Tyrone, Ga. Lyn, 47, a nurse, and Tommy, 46, an E.R. doctor, were alarmed when their son Will stopped talking in his second year. After he was diagnosed with autism in 1998, the Redwoods began doing Internet research and had Will's hair samples tested for mercury. It contained near-toxic amounts of the substance—nearly five times EPA-sanctioned levels. The Redwoods believe Will absorbed mercury via childhood vaccinations, injections Lyn took while she was pregnant, and pollution. "I don't know who is responsible," says Lyn, who launched SafeMinds, a group that promotes the idea that mercury in vaccines is dangerous. "All I know is I have a child who isn't able to live up to his potential."

The devastation felt by families like the Redwoods is perhaps the only thing all parties in the autism debate agree on. The National Institutes of Health says diagnoses have risen from roughly one in 2,500 births in the 1960s to one out of 500 today. Experts cite different causes for the jump, among them a broadened definition of the disease. "A lot of things that weren't considered autism in the past are now lumped under that term," says Dr. Thomas Saari, spokesman for the American Academy of Pediatrics. In Sweden, where thimerosal was eliminated in 1993, the number of cases continues to rise. "People are desperate for an explanation, they want to understand what happened to their child," says Melinda Wharton, acting deputy director of the National Immunization Program at the CDC. "But we have to go with science—not what people feel."

Kyle Smith. Macon Morehouse in Washington, D.C., Joanne Fowler in New York City, Diane Herbst in Manhasset and Giovanna Breu in Chicago

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