Sunday, March 2, 2003 Posted: 6:59 AM EST (1159 GMT)
Liz Birt sits with her autistic son
Matthew, 9, on the stairs of their home in Illinois. Birt is very active
with parents groups that believe vaccines cause autism.
No one knows exactly what causes Autism spectrum disorders (ASDs),
but scientists think that both genetic and environmental factors may
play a role. We do know that parents do not cause ASDs in their
children.
There is no known cure for ASDs. However, early and intensive
education can help children grow and learn new skills. The goal of
these programs is to reduce the symptoms of an ASD in a child.
Medicines may relieve symptoms and be helpful for some children.
CHICAGO, Illinois (AP) --Mention autism to parents, doctors and scientists
these days, and among an earful of different theories will emerge a common nod
of agreement: The perplexing condition is not nearly as rare as once was
thought.
As recently as a decade ago it was estimated that only about 4 per 10,000
children were affected. Research now suggests the rate may be at least 10 times
higher.
The numbers have fueled debates over whether there's been a true surge of
cases and whether environment or genetics could be the cause. Some parents and
research advocates blame vaccines despite recent evidence to the contrary.
But many mainstream scientists point to two much less worrisome explanations:
The definition for autism has changed and schools now offer more educational
services to autistic children.
In 1991, the U.S. Department of Education made autism a new, separate
category for special education services offered at public schools. Those
services tend to be broader and more intensive than for other disorders,
including mental retardation. There's evidence that the 1991 change prompted
what some call "diagnostic substitution," said Dr. Fred Volkmar, a Yale
University autism researcher.
"Autism is kind of a fashionable diagnosis," Volkmar said. "Everybody's
interested in getting better services."
Statistics seem to back up the theory. Department of Education figures show
that the number of children getting services for mental retardation fell from
553,262 in 1991-92 to 532,362 in 1992-93. During those same years the number of
children getting services for autism swelled from 5,415 to 15,580.
The change in school services and the definition, along with research showing
that early intervention could help, raised awareness of the condition.
Autism used to be thought of as "the kid who sits in a corner watching the
record player go around and around. Everybody said that's what autistic is and
anything else is not," said Chicago pediatrician Dr. Joel Schwab.
Schwab said that like many doctors, he may have inadvertently diagnosed
autistic youngsters a decade ago as being mentally retarded, or with nondescript
behavior problems.
A surge in autism cases
Now, autism is increasingly recognized as "being more than just the classic
picture," said Schwab.
Molecular biologist Andy Shih, director of research and programs for the
National Alliance for Autism Research, says that whether or not there's been a
surge in cases, "what is clear is that autism is a serious public health issue.
"With potentially 1 million Americans afflicted with this disorder," Shih
said, "it is no longer something that is rare or seldom seen."
The impact has reached far outside the medical realm.
Many schools are struggling to provide enough services to affected children,
funding for research into causes has grown, and lawsuits blaming vaccines are
proliferating.
"There's just so many kids who have been affected, it's hard to find somebody
who doesn't know somebody who has a kid with autism," said Liz Birt of Wilmette,
Illinois, whose 9-year-old son, Matthew, is autistic.
Within seven blocks of their suburban Chicago home, five other children also
are afflicted. "It's just rampant," Birt said.
Autism even ended up in a debate over a last-minute provision attached to
Homeland Security legislation enacted last fall. The provision, aimed at
protecting drug makers from lawsuits over vaccine-related injuries, prompted
vocal protests in Washington in January by parents who think childhood vaccines
cause autism.
Much has been learned about autism in the past half century. The once
prevailing "refrigerator mother" theory suggesting cold, aloof mothers caused
autism was long ago thrown out as scientific advances favored a biological
cause.
Autism
used to be thought of as 'the kid who sits in a corner watching
the record player go around and around. Everybody said that's
what autistic is and anything else is not.'
-- Chicago pediatrician Dr. Joel Schwab.
But many key questions remain. Researchers don't know if a single gene or
many are involved, or possibly different ones in different cases.
Some think environmental factors might trigger the disease in genetically
susceptible people. Potentially plausible but unproven triggers range from
illness during pregnancy to soil toxins, electromagnetic waves and even
vaccines, though strong evidence so far suggests the shots are safe.
"There's so many things that it could be," said Dr. Robert Byrd of the
University of California, Davis. A recent study suggested autism cases in
California surged nearly 300 percent over 10 years, and Davis researchers are
trying to pinpoint why.
The clamor over causes and numbers has prompted a call for the American
Medical Association to investigate.
Autism has raised deep questions ever since psychiatrist Leo Kanner first
described it as a distinct developmental disorder in the early 1940s, after
observing several curiously afflicted children in Baltimore.
It remains "a particularly challenging mystery," said Steve Foote, director
of neuroscience and basic behavioral science at the National Institute of Mental
Health.
Kanner described what is now known as classic autism -- children with severe
impairments in language and communication, who may appear deaf, sometimes don't
speak, show little eye contact and appear more interested in interacting with
objects than with humans. Repetitive behaviors such as rhythmic finger tapping
or ball-rolling are common.
Sometimes symptoms show up in children who previously appeared to be
developing normally; some call this regressive autism.
It was initially linked to schizophrenia until 1980 when it first appeared as
a separate disorder called "infantile autism" in the American Psychiatric
Association's manual defining mental disorders. It has been redefined twice in
updates of the manual.
No cure, but treatments exist
Autism is not curable but can be
helped with behavioral treatment and sometimes medication.
Autism is not curable but can be helped with behavioral treatment and
sometimes medication.
"People have a much better idea about the diversity of autism. There's such a
range of both severity ... language handicap and mental retardation," said
prominent autism researcher Catherine Lord.
"That has changed perspective on autism both in terms of figuring out who
needs services and also the prognosis for people in the mild range," said Lord,
director of the University of Michigan's Autism and Communications Disorders
Center.
Not all children with autism are mentally retarded but most need special
services.
Kathy Gould, project director for an Illinois program that trains teachers
and parents how to work with autistic children, said demand has increased
significantly in the past five years.
"Every day, more and more people in more and more district schools are saying
these kids are coming in and we don't know what to do with them," Gould said.
"Parent workshops have gone from three a year to 15 a year. Parents are
crying out for additional help," she said.
Liz Birt is among them.
Her son, Matthew, developed normally until he was 15 months old, when he
could count to 10 and say about 30 words. He developed autism symptoms gradually
after receiving two childhood vaccinations on the same day, Birt said. He
stopped talking, acted as if he was deaf, spun in circles, stared at lights and
shunned his family.
At 9, Matthew Birt is still profoundly affected and his mother worries that
as he grows into adulthood, no services will be available.
"Somebody's got to pay attention to this," Birt said. "We're talking about
hundreds of thousands of children who are going to be a big drain on the
economy."
An attorney, she says she'd like to sue vaccine makers but can't because of
legal restrictions against suits filed more than three years after a child's
first symptoms.
Vaccine foes like Birt point to a 1998 British study linking autism with the
measles-mumps-rubella vaccine. There's been a subsequent backlash against
vaccines in England -- and recent measles outbreaks.
The Institute of Medicine reviewed the issue and in 2001 said there was no
proof that autism is caused by the MMR vaccine or by the mercury-containing
preservative thimerosal that was present in some vaccines.
Vaccine foes note the IOM report said a link between thimerosal and an
increased risk of neurodevelopmental disorders is "medically plausible."
Dr. Neal Halsey, an influential vaccine proponent from Johns Hopkins
University, agrees that thimerosal could theoretically be linked with subtle
developmental problems including delayed speech, "but the available data show no
evidence of an association with autism."
"Ongoing studies should answer the question about other neurodevelopmental
problems in about one year," Halsey said.
After evidence in 1999 suggested that the combined amount of thimerosal in
vaccines could expose children to mercury exceeding recommended maximum levels,
Halsey worked with the American Academy of Pediatrics and the U.S. Public Health
Service in urging vaccine makers to discontinue thimerosal use. Now, no vaccines
given to children under 6 months of age contain thimerosal, he said.
"I do not, and never did, believe that any vaccine causes autism," Halsey
said.
Ironically, the opposite may be true, he said, since women who develop German
measles (rubella) early in pregnancy face an increased risk of having an
autistic child.
Not all researchers are convinced that there is no autism link, and the
National Institutes of Health is funding studies to investigate. NIH funding for
autism research has grown along with the number of cases, from $22 million in
fiscal year 1997 to $73.85 million last year, Foote said.
Recent research has led to important discoveries, including evidence that
intensive behavioral training starting as early as infancy can substantially
improve symptoms in some autistic children.
Volkmar, at Yale, and colleagues have found that while healthy babies learn
social interaction by focusing their gaze on people's eyes, autistic children
focus more on mouths.
This could help parents and doctors identify affected children earlier and
get them early intervention, Volkmar said.
Other scientists are searching for genes and other "biomarkers" that might
make autism as easy to diagnose as a simple blood test. For now, doctors still
rely on behavior to diagnose autism.
Studies of identical twins, whose genetic makeup is nearly identical, have
shown that if one has autism, the other faces at least a 90 percent chance of
having severe social impairment, said Dr. Edwin Cook of the University of
Chicago.
But pinpointing which combination of genes are involved could take years, he
said.
"There's just too much we don't know," Cook said.
Copyright 2003 The
Associated Press. All rights reserved. This material may not be published,
broadcast, rewritten, or redistributed.
ALL INFORMATION, DATA, AND
MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
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OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.
Autism
used to be thought of as 'the kid who sits in a corner watching
the record player go around and around. Everybody said that's
what autistic is and anything else is not.'
