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Debated
Autism Therapy Gives Hopes to Parents
Tony Leys, Desmoines Register, June 26, 2005
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Le Claire, Ia. -
Gavin Wilken is out in his backyard, unknowingly demonstrating
extraordinary accomplishments.
The 6-year-old is goofing around with his little sister,
Lindsey. He's talking. He's laughing. He's playing chase.
Their mother, Tami Wilken, watches from the kitchen, expressing
amazement at how normal Gavin seems. You should have seen him a
few years ago, she says. He quit speaking. He failed to respond
to his name. He would hold a pen in front of his face and spin
it for hours on end.
The troubles began subtly when Gavin was 17 months old. "He
started swaying in front of the wall," Wilken says. "At first, I
thought, 'How cute, he's playing with his shadow.' But there was
no shadow."
Doctors, who at first saw nothing wrong, concluded Gavin had
autism. The brain condition can rob children of their
personalities, and it can tear families apart. Most doctors say
they're unsure what causes autism, and they can't explain why
the number of new cases has soared over the past 20 years. They
have little to offer in treatment or in hope.
Tami Wilken says she knows the answers. She has joined an
increasingly vocal and controversial movement of parents who
believe their children's autism was sparked by mercury, which
until recently was included in many vaccines as the base
component of the preservative Thimerosal. Wilken has taken the
belief a step further, seeking out an aggressive treatment,
called chelation, to remove the metal from Gavin's body.
She knows mainstream medical leaders disagree with the theory
and the treatment. "If their oath is to do no harm, why are they
pushing mercury into my child but not letting me take it out?"
she asks.
Doctors skeptical of treatment's benefits
This spring, Gavin became one of 125 children put forward as
success stories by a new national group urging parents to use
chelation to relieve their children of autism. The group,
Generation Rescue, has taken out full-page ads in USA Today and
the New York Times, declaring that "Autism is Preventable and
Curable."
The effort concerns many physicians, who worry that it could
make parents needlessly fearful of vaccines and that it could
lead desperate families to spend tens of thousands of dollars on
a treatment that they say probably doesn't help and could hurt.
Doctors often start the discussion by saying they understand why
parents of autistic children are frustrated with the lack of
explanation and treatment for the growing problem. Federal
researchers say that between 1994 and 2003, the number of
school-age children classified as having autism or related
disorders exploded from 22,664 to 141,022. Official estimates
say as many as one in 166 children are affected. Although many
experts say that much of the jump in cases is due to more
aggressive diagnosis of the condition, most agree that there
also has been an actual increase.
Dr. Patricia Quinlisk, Iowa's state epidemiologist, says large
studies have concluded there is no link between mercury and
autism.
"Thimerosal is not the cause of autism," she says. "Therefore, I
don't think taking it out is the answer." Several European
countries took the preservative out of their vaccines years ago,
she says, and their autism rates continue to grow.
American drug makers began removing the controversial ingredient
from most of their vaccines a few years ago. "The anti-vaccine
people took that as proof something was wrong," Quinlisk says.
In fact, she says, the manufacturers did it because authorities
feared that even baseless concerns could make parents avoid
important vaccinations.
"No way it could be a coincidence"
Chelation, the treatment being used on Gavin, has been around
for many years. It mainly has been used for people who have
suffered from lead poisoning or industrial accidents involving
heavy metals. Chelation medications are designed to bind with
the metals, which the body then can excrete.
Possible side effects include loss of helpful minerals, such as
zinc and iron. Gavin has been taking various forms of the
treatment for four years . His current medicine is a cream that
his parents spread on his arm every other day. They give him
vitamins and other supplements to try to replace lost minerals.
Tami Wilken, who works part time at the International House of
Pancakes, and her husband, Bill, who drives trucks for FedEx,
have spent $65,000 to $70,000 on treatment for their son.
It is worth it, they say. Gavin resumed speaking within two
weeks of starting chelation. Within a year, he was using
six-word sentences. This past school year, he was in a regular
first-grade class with the help of a teacher's aide. They hope
that by third grade, he will be able to handle classwork on his
own.
Quinlisk and many other doctors say some autistic children
improve on their own, for unknown reasons. So the fact that some
kids get better while on a given treatment proves nothing, they
argue.
Tami Wilken doesn't buy it. "Absolutely not," she says. "There
is no way it could be a coincidence."
Source of autism remains unclear
J.B. Handley, Generation Rescue's founder, doesn't buy it
either. Handley, who lives in Oregon, has an autistic son who he
says is improving while having chelation treatment.
Authorities are so intent on vaccinating children that they've
covered up the harm, and studies concluding otherwise are
tainted by the influence of drug companies, Handley says.
Handley contends that all autism is caused by mercury and that
because of the preservative that used to be common in vaccines,
"an entire generation has been poisoned," he says.
That cuts against conventional wisdom, which holds that autism
is a complicated, varied condition that probably has multiple
causes.
Handley says the symptoms of autism are strikingly similar to
those of mercury poisoning. That's why he believes chelation
works.
The treatment has caused controversy before. In 1998, the Iowa
Board of Medical Examiners suspended a West Des Moines doctor
partly for using chelation as a treatment for heart disease and
diabetes. The doctor still hasn't had his license restored.
Under state rules, the treatment may be used only to treat
heavy-metal poisoning. Ann Mowery, the licensing board's
executive director, says she hasn't heard of any Iowa physicians
using the treatment for autism. She says the board hasn't ruled
on whether that would be a permitted practice, because the
subject hasn't been brought up.
Gavin's physician, Dr. Robert Filice of suburban Chicago, knows
his "alternative" therapy is outside the medical mainstream. But
he says he's not worried about getting in trouble for it because
chelation is intended to take out heavy metals, and that is
precisely how he's using it.
Filice is not sure that all autism cases are caused by mercury
poisoning, but he believes that even small amounts of the metal
can harm children who for genetic reasons have trouble excreting
it.
The doctor says he's treated about 20 autistic children with
chelation, and about half of them have shown dramatic
improvement. "There's no guarantee that they're going to
respond. But it's such a safe therapy, with the potential
benefits being so great, I would tend to err on the side of
treating somebody, just to see what happens."
Such talk leaves many people wondering if chelation is the
answer, or if it is just the latest straw for desperate parents
to grasp.
More research urged on mercury's role
Count Steven Muller among the undecided. Muller is executive
director of the Homestead, a Runnells autism treatment agency.
He sympathizes with families who are reaching out for unusual
solutions.
"It's great to have people pushing the envelope, because if they
don't, the world stays flat," he says. "But I've also heard
people say that all autistic kids can be cured, thereby raising
false hopes for families that probably always will be dealing
with this."
Muller's agency relies heavily on behavioral therapies to help
autistic children and adults get along in the world. He believes
there is enough suspicion to justify continued studies of
Thimerosal's possible role. Even now that the preservative has
been removed, he suggests that doctors should consider spreading
the shots out, instead of giving them in bunches. That might
lessen possible complications, he says.
"But when parents say, 'I'm not going to vaccinate my kids,'
that's the wrong approach," Muller says. "You do need to
vaccinate your kids."
Muller is wary of expensive, unproven treatments. He has seen
families go into debt to pay for all kinds of approaches, from
swimming with dolphins to taking complicated vitamin therapies.
Some might work for a few kids, he says, but not for everyone.
Vaccine controversy
BAN: Last year, Iowa became the first state to ban
mercury-based preservatives from most vaccinations.
SCIENCE: Dr. Rizwan Shah of Des Moines said the small
amounts that used to routinely be included in vaccines have
never been scientifically linked with autism.
PARENTS: Yet an increasingly vocal and controversial
movement of parents believe their children's autism was sparked
by mercury, which until recently was included in many vaccines
as the base component of the preservative Thimerosal.
VACCINATIONS: Iowa grade schools require that children be
vaccinated, but parents may apply for medical or religious
exemptions.
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