By CAROLYN ABRAHAM
Saturday, October 19, 2002 – Print Edition, Page A1
Canadian parents are flying to California with their autistic
children to see a doctor who doesn't believe their children have
autism at all, but a smouldering
brain virus producing symptoms that look just like the disorder.
With the growing sense that autism
is spreading like flu as numbers rise in industrialized countries,
the viral theory -- both controversial and unproven -- is gaining
interest, even among the mainstream medical community.
While doctors worry that desperation makes parents vulnerable to
fraud and quackery, most can't help but wonder if there could indeed
be a link between infections and autism,
once viewed as a rare developmental disorder by the medical
community.
Now Canadian doctors, on the urging of parents, are considering
conducting a clinical trial of the complex antiviral therapy that
the California doctor prescribes in conjunction with special diets.
"We have 40 families ready and set to go for the study," said
Doug McCreary, who lives near Orangeville, Ont.
The McCrearys, whose youngest son, Matthew, has been on the
therapy since May, are one of 24 Canadian families already
registered with Dr. Michael Goldberg, whose office is based in the
outskirts of Los Angeles.
Researchers at one of Ontario's university hospitals are now in
talks with Dr. Goldberg, but until they formally decide to conduct
the trial, they have asked not to be named, Mr. McCreary said. He
has noted small, but significant, improvements in the five months
his four-year-old son has undergone the therapy.
Parents have become a powerful driving force in recent
autism research efforts. After all,
nearly 60 years after it was identified, autism
remains one of medicine's great mysteries, with no known cause,
effective treatment or cure.
Speculation swirls around possible culprits: food allergies,
vaccinations, mercury exposure, and without doubt, genes, perhaps
those that encode both physiological and personality traits.
Autism, which hits boys four
times as often as girls and which covers a spectrum of disorders, is
marked by profound social disabilities. Those severely affected
can't talk, make eye contact or return something as simple as a
smile.
Estimates today suggest classic autism
has increased fivefold in three decades, affecting 20 in 10,000, and
as many as one in 300 may have an autistic disorder.
As a result, Dr. Goldberg's theories of a viral culprit
exploiting children who are genetically susceptible has caught on
with several parents.
"Science tells us that an epidemic, which this is, cannot be due
to a genetic or developmental disorder," said Dr. Goldberg, who
describes himself as being too impatient for mainstream medicine's
long process of moving new treatments from labs to clinics.
Educated at the University of California medical school in Los
Angeles, Dr. Goldberg believes people have become increasingly
susceptible to certain immune-system disorders. He points to rising
rates of ear infections, asthma and food allergies.
This, he suspects, is a product of defying Darwin: "Human beings
are the only species to go against survival of the fittest." People
increasingly choose mates on the basis of brains, not brawn, he
says, passing on genes that predispose to immune-system weaknesses.
"Then you add to that a trigger, by some illness or infection,"
he says, and the combination in these children produces symptoms
resembling autism.
Dr. Goldberg has focused, in part, on the role of the Herpes 6
virus, a common infection nearly all preschoolers pick up. If the
immune system is weakened, Dr. Goldberg's theorizes, a child's body
turns on itself and the virus heads to the brain, where it takes up
long-term, low-grade residence.
He calls it the NIDS Hypothesis, short for neuro-immune
dysfunction syndromes.
Dr. Goldberg, who works with researchers at the University of
California at San Francisco, says brain scans of these children show
lack of blood flow to the brain's temporal region, which is involved
in language processing. It is also the site of the amygdala,
important to both social and emotional behaviour.
Blood tests of children he treats show abnormally high numbers of
viral antibodies, Dr. Goldberg says. This suggests an exaggerated
immune response, or evidence of continued infection.
"If we catch these kids early enough, they can recover from
this," Dr. Goldberg said. "Most of them started out normal and
healthy."
Like any child, the McCrearys' son Matthew began as a toddler to
blurt out words such as cookie, bottle and motorcycle, especially as
parades of bikes whizzed past their country house.
Then slowly, he fell silent, withdrawn, losing "even a flicker of
eye contact," Mr. McCreary said.
"When 10 Harleys went by the house, he wouldn't even look up. It
was like having our child kidnapped in front of our eyes."
They called Dr. Goldberg last August, but had to wait until this
past spring for an appointment.
Matthew is now on a regimen of antiviral, antifungal and
antidepressant drugs indefinitely. He sticks to a gluten-free and
dairy-free diet, in the hope that this can alleviate the
gastrointestinal troubles common in children diagnosed with
autism.
But pediatrician Lonnie Zwaiganbaum, at McMaster University and
Hamilton Health Sciences Centre, cautions, "What's the end point;
are these drugs the kids stay on for the rest of their lives? What
are the long-term effects; does anyone know? I worry, not because
the treatment is unconventional, but because it's unproven."
Mr. McCreary estimates that for the drugs, regular blood work and
long-distance phone calls with Dr. Goldberg, the therapy costs about
$5,000 Canadian a year.
"Already for us," he said, "it's been worth it."
Matthew now sleeps through the night and responds to his name,
and the chronic diarrhea has stopped. "In our world, those are big
things," said Mr. McCreary, whose second son, Michael, has
high-functioning autism, or
Asperger's syndrome.
"We know this won't work for every child; that's not the way
autism works. But the blood tests
[looking for the viral traces] should be standard therapy." Mr.
McCreary now is head of a fledgling group, NIDS Canada.
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