Dr. Spomemka Luedi is used to being ignored. Miles, her 9-year-old autistic son, won't look her in the eye, talk, or listen. The Downers Grove dentist is one of many Illinois parents whose children began to show signs of autism after being vaccinated.
In the '90s, some research had identified a possible link between thimerosal, a mercury-based preservative used in many vaccines, and neurodevelopmental disorders. Luedi and other parents with autistic children pressed health and medical officials and lawmakers to take a closer look at those studies and act.
"They closed their ears and their eyes," Luedi says.
Now, lawmakers are beginning to wake up. The U.S. Congress is debating the Mercury-Free Vaccine Act of 2004, passionately supported by U.S. Rep. Dan Burton, R-Indiana, whose grandson is autistic. And the legislatures of several states, including Missouri and Iowa, are working toward laws to ban thimerosal in many products. Luedi and other parents want Illinois lawmakers to pass a similar ban.
Luedi says she watched Miles begin to demonstrate signs of autism within days of being vaccinated when he was just 2 years old.
"He'd had trouble earlier, after his MMR [measles, mumps, and rubella] vaccination, when he was about a year old," Luedi says.
"When I got him back, he couldn't look in bright lights. He was crying and closing his eyes, and I felt that it could be neurological, knowing those three things [measles, mumps, and rubella] shouldn't be together. I had been told in medical classes that it was best to wait a few months before giving a second live vaccine to avoid potential neurological problems."
About a year later, Miles received the triple-dose DTaP (diphtheria, tetanus, and pertussis) vaccine and Hib (Haemophilus influenzae type b) vaccines in one visit. Within 36 hours, Luedi says, he had a fever, couldn't sleep, began exhibiting a rocking motion, and quit talking.
"I had this little boy who was incredibly bright, advanced in everything," Luedi says. Before he was a year old, Miles could repeat the alphabet. "Then he received the vaccines, and I lost him."
Many believe the problem started in the '90s, when children began receiving more vaccines, including a hepatitis B shot before infants were a day old. Other vaccines were closely timed or in triple-virus injections. The mercury-based thimerosal preservative was introduced in 1990. It's still found in many vaccines, including flu shots given to pregnant women.
According to the Centers for Disease Control and Prevention (CDC), 1 in 166 children is diagnosed with an autism-spectrum disorder. Illinois State Board of Education statistics indicate a 945 percent increase from 1993 to 2003 among students ages 3 to 21. However, this figure only includes children classified as autistic for special-education purposes. According to U.S. Department of Education data, the number of autism cases in Illinois climbed from five in 1992 to 3,802 in 2002, a dramatic increase mirrored in other states.
Experts still debate mercury's role in a trend that some say is approaching epidemic levels. CDC reports say that only a "very small amount" of thimerosal was used in vaccines and that there is "no convincing evidence of harm." However, in 1999, the U.S. Food and Drug Administration reported that mercury exposure from vaccines exceeded federal safety guidelines and recommended, but didn't mandate, the removal of mercury from vaccines. Vaccine-makers began removing thimerosal from routine childhood vaccines in 1999, but older lots are still in use. Thimerosal is also present in many flu shots. Although thimerosal-free alternatives are available, some providers use the cheaper thimerosal-containing vaccines.
There is a growing movement to ban thimerosal from health products. In Missouri, House Bill 852 passed by an overwhelming 152-4 majority and is on its way to the Senate. In Iowa, the House has amended and returned Senate Bill 2209 to ban mercury. Congress is considering HR 4169, the Weldon-Maloney Bill, also known as the Mercury-Free Vaccine Act of 2004.
Opponents of legislation to ban thimerosal cite studies that have revealed no link to autism. But Alan Clark, MD, former president of the Greene County (Mo.) Medical Society, wants critics to take a closer look. Clark, whose 8-year-old son Devon is autistic, has lobbied extensively for the Missouri bill.
"We've got a stack of peer-reviewed, well-done published articles that are about a foot-and-a-half tall," Clark says, "and that's just some of them. They all point to the toxicity of thimerosal, to its potential of causing neurological damage in children -- or adults, for that matter."
Luedi thinks mercury is just part of the problem, and she wants experts to take a hard look at all vaccination policies.
"We don't say, 'Do not vaccinate,' " Luedi says. "But the vaccine has to be pure and clean, and there has to be more control over what manufacturers put out.
"This is an unbelievable problem that we have," Luedi says. "Thousands of children are hurt."
Health officials worry that the controversy will cause parents to stop vaccinating their children, posing health threats to these children and to the public. A CDC statement assures parents that vaccines are monitored for safety.
But Springfield resident Laura Cellini, whose 5-year-old son Jonathan is autistic, says many medical professionals still use thimerosal-tainted vials and that parents must check labels and package inserts.
"We're not a bunch of unreasonable people who think that all vaccines are bad," Cellini says. "We know they save a lot of lives. But many of us are frustrated because when they tell us the vaccine is safe, we blindly trust that they're right.
"The FDA has advised pregnant women not to consume swordfish and to limit tuna, yet we inject ethyl-mercury subcutaneously into kids under the age of 3. Is this safe? I want a molecular scientist to study this."
Cellini says Jonathan has made great progress with a biomedical approach similar to the DAN (Defeat Autism Now) protocol recommended by the Autism Society of America. The DAN protocol involves testing an affected child for biomedical dysfunction and includes nutrition and dietary intervention.
Constantine Bitsas, who directs the Pfeiffer Treatment Center in Warrenville, Ill., advocates this less conventional but increasingly recognized approach. "Biochemical imbalances affect brain chemistry," says Bitsas. "For example, copper is essential for cell growth, but too much can cause hyperactivity and lack of focus, symptoms associated with ADHD [attention-deficit/hyperactivity disorder]. It's a critical element that's needed to convert dopamine into norepinephrine and epinephrine, or adrenaline, so too much copper might result in a kid who is hyperactive."
"Children with autism often have high blood levels of metals, such as mercury or copper," Bitsas says. "We believe there is a genetic predisposition, and environmental insults at a critical time during a child's development may be enough to trigger the collection of symptoms identified as autism."
However, he says, it's difficult to isolate the cause of recent autism trends, including Asperger's, which is an autism-spectrum disorder.
"We've looked at copper in drinking water, which is another environmental insult that increased at that time period as well," Bitsas says. "I think you have to look at the whole picture."
JoAnn Sworan, of Homer Glen, Ill., whose 4-year-old son Charlie is autistic, decided to try Pfeiffer's biomedical approach only after spending "thousands and thousands of dollars" on everything from brain scans to genetic therapy.
Charlie progressed from severe to borderline autism and will be mainstreamed into kindergarten next year.
According to Georgia Winson of the Autism Project, a Springfield-based program, many effective approaches to autism are available, ranging from behavioral treatment to techniques that help autistic kids develop communication skills.
"What's helpful for one may not be for another," Winson says, "but studies show that children do show improvement with early intervention."
However, many parents say that they have lost valuable time while trying to find a doctor to diagnose autism.
"They say, 'Don't worry, he's fine, he's a little slow.' " Sworan says. "Every parent I've talked to who's in this boat has heard the same thing, which is really, really sad. Pediatricians are trained for everything else, from colds to head lice, but they aren't trained to understand autism."
Alan Clark and other physicians are trying to change that. He's traveled to Tulane University in New Orleans to learn more about biomedical treatment and is planning a physicians' symposium on thimerosal. He says 500 physicians attended a recent DAN conference in Washington, D.C.
"The information is just not getting out," Clark says. "There's definitely a biochemical basis. These kids do get better with the DAN protocol treatments. Unfortunately, very few parents and even fewer physicians know about it."