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08/14/01 By JULIE SULLIVAN

Dr. Jim Laidler is as mainstream as medicine gets: an Oregon Health & Science
University anesthesiologist and pain expert who works on the liver transplant
team.

But this summer Laidler stepped into one of the diciest positions around:
He's trying to bridge the gap between anguished parents who say there is a
silent, understudied and undertreated epidemic of autism, and physicians and
public health officials who dispute the extent of increase in cases and what
medicine is doing in response.

Oregon parents, fed up with the lack of medical treatment and research
attention their children receive, are taking unprecedented action:

-- This month, parents opened a downtown Portland office, hoping to establish
a new medical clinic and research center by fall. The Northwest Clinic for
Children, to be in the Portland area, proposes to offer treatment and
expertise on autism unavailable from most pediatricians.

-- In July, parents of four autistic children filed a class-action lawsuit in
Portland against makers of childhood vaccines and the doctors who gave the
shots, claiming that a preservative in the vaccines poisoned their children
and left them brain damaged. The lead attorney, Michael Williams, won
significant claims in the fen-phen diet drug and Dalkon Shield intrauterine
device liability cases. The lawsuit demands greater study of autism.

-- Oregon's autism experts have organized Autism Research & Resources of
Oregon to develop a campus that serves families and individuals, including
model education classrooms, job and life services for adults -- and medical
support. The campus is the dream of Kathy Henley, a Portland woman whose son
has autism.

-- Laidler and his wife, Dr. Louise Kirz, an anesthesiologist in obstetrics;
along with Henley; Gene Stubbs, an OHSU child psychologist; and others, are
working to provide ways to formally educate primary-care physicians about
children with autism.

Support from Congress

The flurry of activism comes as 119 members of Congress last spring formed a
coalition for autism research, pushing through a record $50 million in
appropriations. Among the coalition members: the grandfather of a child with
autism and a representative from a New Jersey district in which the national
Centers for Disease Control and Prevention found that 1 in 150 to 160
children had some form of the disorder.

Laidler calls his work "involuntary volunteerism." He and Kirz have two sons
affected by autism.

"There are finally enough of us. It has reached a critical mass," Henley
says. "When it was 1 in 10,000, it was easy to say, 'Poor you, but that will
never happen to me.' Then it was 1 in 1,000. Now it's 1 in 150. You can't
turn around without meeting someone with autism. This is everybody's
problem."

Is there an epidemic of autism?

The once rare developmental disorder is common, the National Institutes of
Health states. A California Department of Developmental Services study found
the number of people with autism shot up 273 percent between 1987 and 1998 in
that state, four times the rate of other disabilities such as epilepsy and
mental retardation.

Recent studies in Japan, Sweden, Britain and the United States found a
prevalence far higher than expected, from 1 in 150 to 170 children with some
autism spectrum disorder compared with the historic accepted incidence of 1
in 5,000. One British study reported in June in the Journal of the American
Medical Association that the biggest increase appears to be among children
with mild and few impairments. But the numbers are more prevalent even for
the classic definition of autism.

The American Academy of Pediatrics has issued new guidelines for assessing
and treating the disorder.

But many physicians and researchers say there is no epidemic -- only
increased awareness and reporting of a broader definition of autism that now
includes children who, years ago, would have been labeled merely "eccentric."
The California study was criticized for not factoring in changes in
population and changes in the definition of the disorder.

Bryna Siegel, director of the pervasive developmental disorders clinic at the
University of California at San Francisco, thinks that better, earlier
reporting accounts for most of the increase. Siegel, who follows nearly 3,000
affected children, says improved reporting may be casting such a wide net, it
now catches children who appear eventually to outgrow their delays. She also
thinks the numbers include children who used to be diagnosed as mentally
retarded.

"It's almost incomprehensible to put that forward as a discussion point,"
counters Jeff Bradstreet, a Florida physician who testified before Congress.
He treats children, using autism therapies found outside mainstream medicine.

"Were we all just clueless? Do you think all those teachers suddenly took off
their sunglasses? These kids don't look mentally retarded," he says. "This
was an uncommon, rare disorder barely heard of when I was in medical school.
Now, people like me have waiting lists of patients two years long."

Looking for answers

Says Karen London, founder of National Alliance for Autism Research in
Princeton, N.J., one of the largest private sources of research funding in
the United States and abroad, "The truth is, we don't know.

"The numbers are higher than anyone imagined years ago. Is that 100 percent
due to better diagnosis? For a large percentage, definitely.

"Would I rule out a real increase? I wouldn't rule it out. But we don't know
yet. We haven't had enough science."

All agree that the numbers carry huge implications for schools, social
services and families. In June, the National Research Council urged that
children be screened as early as possible for autism -- as they are for
vision and hearing problems -- because the most effective treatment, so far,
is early, intense behavioral intervention.

But a failure to win recognition -- and public outrage -- for the changing
numbers is one more sign for parents that the medical community is
downplaying and distancing itself, a belief shared even by mainstream
practitioners such as Laidler.

"If there were any other disease that was causing this percentage of the
population to be permanently disabled, the CDC would be all over it," Laidler
says.

Nevertheless, the CDC has boosted its studies, opening several Centers of
Excellence to better gauge the incidence.

But many families still feel disconnected from the medical community at
large.

First identified as a psychiatric disorder, autism gradually became
recognized as a spectrum of neurological problems in which those affected
share not only behaviors but also medical conditions, including intestinal
problems and poor immune systems.

The lack of scientific research and the vast range in impairment leaves
doctors, who are steeped in tradition and scientific logic, facing a disorder
with neither. Doctors also are turned off by desperate, Internet-savvy
parents who show up with articles on the latest experimental treatment. And
they're spooked by class-action lawsuits that indict a standard of care such
as vaccinations.

Masking other problems

Laidler and Kirz feel spooked, too. But they also understand parents' desire
for treatment and their frustration that the "autism" label causes doctors to
overlook medical problems.

When their son Ben, a sunny 8-year-old with pervasive developmental disorder,
developed problems using the toilet, they were told, "Well, he has autism." A
specialist then discovered Ben had a tethered spinal cord, which, when
surgically corrected, eliminated his bladder problem.

Doctors who listen, or who develop expertise, are quickly overrun.

Dr. John Green III, a family practitioner who embraces holistic medicine,
opened his Canby office to six children with autism two years ago. This
summer, he sent letters to his adult patients saying he could no longer
provide care as his caseload now includes 1,000 affected children.

Laidler wants to help all doctors understand. He wants to share the science
behind some emerging treatments, such as a wheat and dairy-free diet.

Two years ago, Laidler's son David, 4, couldn't talk or make eye contact.
Today, after treatment and intense behavioral intervention, he is no longer
on the autism spectrum.

Experts say parents make all the difference.

Dr. Susan Hyman, a pediatrician and autism researcher, said parents in
Rochester, N.Y., created a community in which children have a range of
education choices and a university faculty steeped in autism education and
research.

When Hyman's college roommate, Karen London, and her husband, Eric, realized
that there was no private charity leveraging dollars for autism research, the
New Jersey parents formed the National Alliance for Autism Research with
$150,000. Four years later, the alliance is awarding $3 million in grants and
helping boost government spending.

The Londons' son is 13 and barely speaks. But Karen London says she's working
for all parents and children, especially the siblings. And that's why
Portland's Henley, whose adult son Sean has autism, has developed a plan to
help others from her 20 years of experience.

UCSF's Siegel says her research also shows that parents' care measurably
helps a child's progress. She agrees with the parents that, while genetic and
brain research is needed, so is research on effective treatments.

"We've got one whole generation of kids already here that genetic research is
never going to help."

You can reach Julie Sullivan at 503-221-8068 or by e-mail at
juliesullivan@news.oregonian.com