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January 9, 2002
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·
With Rates Rising, Race To Find Autism Cause &
Better Treatment
·
Parents and Researchers At Odds Over Treatment
[First of two unusually good articles on autism. By
Scott LaFee in the
San Diego Union-Tribune. One wonders why it took over four
months to
publish. Thanks to
Steve Gallup.]
www.signonsandiego.com/news/uniontrib/wed/currents/news_1c9autism.html
A generation ago, the most common medical advice given to
parents of an autistic child was institutionalization. With no effective
treatment or cure, alternatives were few.
Those days are over. After years of being either ignored
or misunderstood, autism is at last giving up its layered, tangled, contradictory
secrets. Progress comes not a moment too soon.
For reasons not at all clear, the rate of reported cases of
autism is rising. Between the years 1987 and 1998, the latest figures
available, the California Department of Developmental Services—a statewide
agency providing services and support to children and adults with developmental
disabilities—reported a 273 percent increase in diagnosed cases of autism, one
of several diseases in a related spectrum that also includes Asperger’s
syndrome and Pervasive Development Disorder.
California isn’t unique. Studies in Illinois, Florida,
England, Iceland and Japan have all recorded incidence rates of autism much
higher than previously assumed, some worse than here. A decade ago, it was estimated
that one child in 10,000 would become autistic; now the number has dropped to 1
in 500, and less. Autism activists have a word for what’s happening: epidemic.
But is it? Like almost everything else about autism,
indisputable facts about the disease are scarce. At least some of the increase
is likely due to improved techniques for diagnosing the disease and a greater
social willingness to do so.
But this fact is undeniably true: Autism is among the most
tragic of neurological diseases. It typically strikes children between the ages
of 18 and 36 months, erasing emergent personalities and cloaking what’s left in
an array of bizarre and impenetrable behaviors.
Some autistic persons, for example, cannot wear clothing
because it feels as if it were sewn with glass shards. Others sense light as a
constant shriek or experience touch as color. Some seem to feel nothing at all.
The world for them is muted in cerebral gauze, unnoticed and uninteresting. A child
with “classic autism” may lack the ability to relate to others, including
family members. He may not comprehend the meaning of a smile or that others see
the world differently.
A child with autism is trapped in a mental world of
his own making and
unmaking. He cannot explain what goes on inside his mind; we
can only guess
and gasp. “Not being able to speak was utter frustration,”
recalls Temple
Grandin, a 44-year-old autistic woman, author and professor
at Colorado
State University. “If adults spoke directly to me, I could
understand
everything they said, but I could not get my words out ...
My mother and
teachers wondered why I screamed. Screaming was the only way
I could
communicate. Often I would logically think to myself, ‘I am
going to scream
now because I want to tell somebody I don’t want to do
something.’ “
The history of autism research has until recently been
a sorry one.
It was not until 1943 that autism was first identified
as a distinct
neurological condition by Leo Kanner, a Johns Hopkins
University psychiatrist. The cause of autism eluded Kanner, but a few years
later, a Hungarian psychotherapist named Bruno Bettleheim claimed the source to
be cold, unfeeling parents who drove their children into mental isolation.
However dubious-sounding now, Bettleheim’s conclusions
were widely disseminated over the next two decades. Autism was lumped with
other psychological maladies. Research languished.
Bettleheim’s notions eventually crumbled as advances in
medical science and technology revealed more and more about how the human brain
really works. But autism remains more enigmatic than not. Disability from the
disease varies in the extreme. Some autistic persons require constant supervision
and assistance, even permanent institutionalization. Others attend regular
schools, find jobs, lead independent lives. Their affliction may not even be
noticed by most people.
Reduced to its essentials, the search for the cause of
autism focuses upon two factors: genetics and the environment. Is autism passed
down? Or is it provoked by something around us, a toxin or virus perhaps?
There is little doubt genetics plays a part. Three out of
four autistic people are male. A family with one child with autism has a 5 percent
to 10 percent chance of having another child with the disease, while a family
with no autistic children has only a 0.1-to-0.2 percent chance of having a
child with autism.
Most mainstream autism researchers believe the disease
results from neurological problems that occur during prenatal development or in
the first years of life when the newborn brain is still busily making new
connections.
Patricia Rodier, an embryologist at the University of
Rochester, has published papers describing structural abnormalities in an
autistic brain that suggest something untoward happens to the embryonic brain
just weeks after conception, well before most women even know they are
pregnant.
Other researchers note that autistic brains have smaller
memory, emotion and learning centers—the amygdala, hippocampus and cerebellum— than
normal, a finding that suggests developmental disturbances in the third trimester
of pregnancy or shortly after birth.
An autistic brain does not seem to function like a normal
brain. At UCSD, neuroscientist Eric Courchesne and colleagues have used
deep-brain scans to show that the fusiform gyrus, a part of the brain involved
with face recognition, is not active when autistic children are shown pictures
of faces. Instead, a different part of the brain lights up. Other studies report
apparent malfunctions in the parietal lobes, which contain important sensory
centers, and the corpus callosum, the bundle of nerve fibers connecting the
brain’s two halves.
Anatomical and functional abnormalities like these
strongly suggest dysfunctional genes and misguided development. Some gene
candidates have been identified—a gene called WNT2 and another called HOXA1,
both involved in early brain development and a third gene that codes for serotonin,
a key protein used in neuron communications. It has been estimated that 10 or
more genes may ultimately be implicated.
But bad genes are probably not the strict cause of autism—at
least not in all cases. Rather, certain genes and resulting brain development
could predispose some children to autism if other factors come into play.
The identity of these factors is a subject of considerable
controversy and consternation. They range from chemicals in the water supply to
antibiotics to drugs used to induce labor.
Most notorious, though, is the widely disseminated belief
that childhood vaccinations are the villain, specifically the measles/mumps/rubella
or MMR injection, which is typically given to children shortly after the age of
1, a time when many parents say they first notice autistic behaviors.
“The vast majority of people with young kids with autism
believe it was caused by a vaccine or by an overexposure to vaccines,” said
Bernard Rimland, founder of the San Diego-based Autism Research Institute.
According to Rimland and others, there are at least two
scenarios in which vaccinations could lead to autism. In one, trimerosal—a mercury-based
preservative once widely used in some childhood vaccines— causes neurological
damage to infants who are eventually diagnosed as autistic. In the other
scenario, the multitude of required vaccines, some containing weakened viruses,
overwhelms the immature immune systems of vulnerable children, leading to brain
infections by invasive, neuron-damaging microorganisms and chemicals.
“Kids today are inoculated with 22 vaccines, compared to
just three in 1940,” said Rimland. “I’m not against vaccines, though I don’t
think they do nearly as much good as some of the drug companies and the medical
establishment would suggest. But I do ask, how many vaccines can a kid take before
his immune system breaks down?”
Current concern over an autism-vaccine link erupted in
1998 after British research pointed to MMR as a potential culprit. But newer
studies, responding to the uproar, have found no creditable evidence of a
connection. In one study, researchers
compared the number of Californian children diagnosed with autism between 1980
and 1994 with those who received the MMR vaccine during the same period. The
vaccination rate, during this time, rose 14 percent while the autism rate grew
many times faster. If there were a compelling link, the researchers concluded,
the rates should have been much more similar.
Because the exact cause of autism remains unknown, people understandably
cast around for possible reasons and answers. Vaccines are easy targets,
experts say. Anecdotal stories abound about an apparent causal link, but the
connection seems more coincidental than scientific.
“Who’s to say there aren’t things in the environment
involved in autism,” said B.J. Freeman, a professor of medical psychology at
UCLA. “But one of them isn’t MMR. If you look hard enough and know what to look
for, you can see evidence of autistic symptoms in the first few months of life
in 95 percent of cases.”
There is no cure for autism, but its effects can be
ameliorated. The key, according to Freeman, is identifying autistic children as
soon as possible—and acting.
In a small room, a young woman sits on the floor
surrounded by toys and a small boy named Nikko. She picks up a toy—a plastic
train—and rolls it across a table, hooting. Nico pays no attention at first,
but then grabs for the train. The woman pulls it away, insisting first that
Nikko tell her what it’s called.
“What is this, Nikko? It’s a train. Say train.”
Nikko frowns, refuses to speak. Finally, he mutters
something that
sounds like train, grabs the toy and happily begins rolling
it himself, back and forth. From behind a mirrored window, unseen by Nikko and
the woman, Laura Schreibman watches the exchange. Beside her, two graduate
students film the action and jot down times and behaviors.
Schreibman runs UCSD’s Autism Research Laboratory, an
ongoing investigation into various behavioral methods being used and promoted
as treatments for autistic children like Nikko.
As all parents of autistic children learn, there is no
shortage of alleged autism remedies. Some advocate dietary changes, such as
boosting vitamin intake or eliminating certain food proteins like gluten from
grains and casein from dairy products. Some require treatments that allegedly
purge the body of heavy metals and other toxins. Others employ drugs, from medicines
used to combat depression, convulsions and hyperactivity to more controversial
concoctions like secretin, a hormone involved in digestion.
Supporters of these therapies often cite examples of
autistic children who have seemingly stepped back from the mental brink and
rejoined their families, friends and the external world.
“Very few people talk about a cure, but I’ve seen plenty
of autistic kids treated who are now indistinguishable from normal kids,” said
Rimland of the Autism Research Institute and an advocate of vitamin therapy.
But others are less persuaded.
“If a parent tells me that they want to change their
autistic child’s
diet, give them extra vitamins, and I don’t see any specific
medical harm, then who am I to tell them not to do that?” said Schreibman.
“But the only treatments empirically demonstrated to be
effective for autism are based on behavior. They’re not a cure, but nothing
else has been documented to work, at least not scientifically.”
Applied behavioral analysis (ABA) comes in many forms. No
single method works for every autistic child. Some, like Nico, respond better
than others.
“Nico is motivated by toys,” said Schreibman. “A lot of
autistic kids aren’t. Toys don’t interest them, and that makes connecting with
them _______________________________
that much harder.”
Connecting is a key to >> DO SOMETHING ABOUT AUTISM NOW <<
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Behavior training is what it sounds like. Therapists use
visual and verbal cues to teach autistic children what to do and how to behave
in different, specific circumstances. Sometimes
this is done with pictures, food, mimicry or simply repeating a behavior until
the child catches on. The setting can be limited to a child and therapist or
parent, or it can take place in a more communal setting, such as the Children’s
Toddler School, a preschool run by Children’s Hospital that enrolls and mixes
together autistic and developmentally normal children.
“Other children are often the best teachers,” said Aubyn
Stahmer, clinical research director at the school.
When parents first arrive at UCSD’s autism lab, they are
asked to imagine where their autistic child will be in 20 years. Responses tend
to be optimistic. “Most parents say college or married,” said Schreibman.
But these expectations usually decline as parents become
more realistic about what science and medicine can do. Schreibman offers optimism,
but not false hope.
Yet that still represents a profound change from the past.
A generation ago, there seemed no hope at all. Autism was a mysterious scourge,
an unidentified robber of children’s minds and personalities.
Last year, researchers at the National Institutes of
Health reported that they had found elevated levels of certain brain proteins
in newborns who later became autistic. The finding represents the real
possibility that biological markers might exist that could eventually help
doctors identify autism before symptoms become catastrophic.
“With early diagnosis, within the first few years of life,
and effective treatment, the natural progression of autism is improvement,”
said UCLA’s Freeman. “That’s not a grim prognosis.”
Rather, it’s a start.
Copyright 2002 Union-Tribune Publishing Co.
* * *
[This article has so far, reports the best reading of the
political tone and debate going on between autism parents, medical experts and scientists
over cause, treatment and cure for autism – and I’ve read virtually everything
published about autism by the lay press in the last 3 or 4 years. –LS By Scott LaFee in the San Diego
Union-Tribune.] http://www.signonsandiego.com/news/uniontrib/wed/currents/news_1c9autfight.h
tml <-- address ends here.
The scene is a session at the Autism Society of America’s
annual conference, this one held last July at the Town & Country’s
convention center in Mission Valley. The meeting room is crowded, mostly with
parents of autistic children, some of whom play quietly between the chairs.
Laura Schreibman, a professor of psychology and director
of UCSD’s Autism Research Laboratory, is talking about scientific progress in
treating autism.
“And since we don’t really have any answers,” Schreibman
tells her audience at one point, “there’s a vacuum that gets filled by all
manner of errant information or phony treatments.”
Take vaccines. Many people believe that childhood
vaccinations like the measles-mumps-rubella injection are linked to autism,
that there is some sort of cause-and-effect.
“But no large scientific study supports that contention.
There is just no creditable proof,” Schreibman says.
Not far from Schreibman, in the Golden Ballroom, Bernard
Rimland, co-founder of the ASA and later the Autism Research Institute (ARI) in
San Diego, is talking too, but with a notably different message.
He thinks vaccines are at least partly culpable for autism
and that doctors cannot necessarily be trusted. “You simply cannot believe what
the medical establishment tells you,” Rimland says.
The crowd, also primarily parents and autism activists,
roars in agreement.
Welcome to the war against autism, a struggle rife with
emotion and tension, a fight scarred by suspicion and frustration, desperation
and confusion.
You can blame a lot of this on the disease itself. Autism
is a spectrum of neurological conditions, from so-called “classic autism” to Pervasive
Developmental Disorder-Not Otherwise Specified or PDD-NOS. Effective treatments are limited and
evolving. There is no cure.
“I would say we are still in the dark ages in terms of
basic science, of understanding autism,” said David Amaral, director of
research at the MIND Institute in Sacramento.
Autism can be devastating, to the victim and his or her
family. It most notoriously strikes children around the age of 2, stripping
away language and socialization skills, reducing them to incommunicable, inexplicable
ghosts of themselves. Most parents will try almost anything to get their child
back.
“They grab onto anything that gives them hope,” said Bobbi
Kohrt, an autism specialist with San Diego City Schools.
Unfortunately, the history of autism treatment is fraught
with “interventions du jour, things like metronome therapy and swimming with dolphins,”
said Kohrt. Such alternative methods frequently tout success stories of
autistic children effectively treated, even cured. Some are even supported by
research, though it may be incomplete or suspect.
Mainstream medicine struggles to compete. Real scientific
progress is slow, incremental and frustrating. It’s rife with caveats and
limitations. “Parents come to us for
answers,” said UCSD’s Schreibman, “and we don’t have them. They come with what
sounds to them like a possible solution—a change in diet or some new hormonal
treatment that they’ve heard about on the Internet—and we tell them that there’s
no evidence it works. Or that it’s something we’ve never heard of.
“They say OK, if that isn’t the answer, what is? All we
can say is we don’t know, at least not yet. Things can get very acrimonious and
unpleasant.”
Tensions are perhaps unavoidable. Parents of autistic
children are desperate for help, yet many complain they cannot easily find it
in the medical profession.
“It was hard just getting a diagnosis of autism,” said one
mother who asked not to be identified. “My pediatrician kept telling me to
wait, that my son, who was 18 months and not talking, was just developing
slower than other children. He said boys were like that.”
In the past, pediatricians were often reluctant to
identify a child as autistic. Until quite recently, most pediatricians had
little or no formal training in identifying the disease. And some feared
offering such a diagnosis. It was stigmatic, and it didn’t necessarily mean the
child would receive effective treatment.
Things have improved. A diagnosis of autism is no longer
so onerous. Indeed, it is required
before most children can begin to receive specialized services. But conflicts
between parents and doctors persist, in part because the former sometimes
suspect the latter do not share the same goals.
“Most people believe doctors have their welfare near the
top of their priority list,” said autism activist Rimland. “That’s not
necessarily true. There are other
factors, such as their prestige or place in the medical community if they don’t
follow mainstream medical procedures.”
Rimland is not new to the struggle. In the 1950s, spurred
by the birth of his own autistic son, the former Navy psychologist began
investigating the disease. In 1964, he wrote a book suggesting autism stemmed
from cognitive malfunction. The idea was revolutionary, and substantially
changed the path of autism science and medicine.
Rimland continues to push for change, collecting data from
parents of autistic children which, he says, show most mainstream medical
practices are ineffective or worse.
In the case of vaccines and autism, Rimland contends there’s
also the issue of money. “Remember what’s at stake: Billions of dollars of
liability for the drug companies plus the credibility of the medical
establishment, both of which have spent decades bragging about the safety and
validity of these vaccines.”
Such words, Schreibman said, don’t help.
“There’s an incredible amount of distrust and it
really bothers me,”
she said. “It’s crazy. Some parents think (doctors and
scientists) have the answer and we’re not telling them. But why would that be
the case?”
Back at the ASA conference, UCSD researcher Karen Pierce
is describing some of the latest neurobiological findings on autism, again to
an audience comprised mostly of parents.
The parents listen respectfully, but there is an air of
skepticism. They don’t doubt the work
or its integrity, but they still wonder about stories they have heard or read
regarding potential cures.
“One of the challenges for parents is too much
information,” said Gregory Fletcher, father of an autistic son. “There’s a lot
of stuff on the Internet.”
Pierce is diplomatic but clear: These are mostly just
stories, she says. What is important, in the long run, is to evaluate the
science and how understanding of autism has been advanced.
A few parents in the audience are not wholly persuaded.
They want to know why scientists and doctors don’t seem to be pursuing every
possible lead. Don’t they care?
Eric Courchesne, a colleague of Pierce’s and a leading
autism researcher, rises. He had been sitting among the parents, listening. “I
just got back from a meeting of autism researchers,” he says, “and I can tell
you that we all care. You can’t do this work and not care.”
The audience seems to accept this. A few parents shake Courchesne’s
hand. Many corner him later to ask more questions. Courchesne answers, but it’s
not an entirely satisfying experience for anyone.
The science of autism is still mostly preoccupied by
questions, blank spaces in search of answers. Until they are filled, there will
be a sort of emptiness, one filled all too often by doubt and frustration.
Copyright 2002 Union-Tribune
Publishing Co.
Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org
Michelle Guppy
Catherine Johnson PhD
• Ron Sleith •
Kay Stammers • Edward Decelie
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