Here's another one...
salon.com
Secrets and lies
Is the astonishing rise in autism a medical mystery or a
pharmaceutical shame?
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By Lesli Mitchell
August 2, 2000 | As an Internet project manager in
telecommunications, I am familiar with the symbiotic business
relationship of industry and government. I understand the
dynamics of profit, getting new products to market as quickly
as possible, negotiating "value-added" partnerships, and above
all the potential for ethics to be sublimated to the bottom line.
As a mother, I didn't want to believe that the same business
practices applied in medicine, because that would have meant
accepting the possibility that my child was perceived first and
foremost as a target market. A new mother is particularly
vulnerable, and most of us harbor a trust bordering on
reverence for the medical community, believing its members to
be omniscient and above reproach.
When I held my baby in my arms for the first
time and understood the magnitude of my
responsibility, my faith in medicine translated
into an implicit contract with my doctor: My
job is to love him; your job is to keep him
well.
And my baby was well, at least until 1998,
when, at 2 years old, he was diagnosed with
autism. When I read statistics from the
Department of Education that said autism in
school-age children had increased 556
percent in five years, skyrocketing past any
other disability, I was shocked and horrified.
But I trusted what my doctors told me: that
the increase was due to better diagnostic
skills, not to any real increase in autism.
It took two years for that trust to erode,
chipped away by increasing evidence that
business motives had mandated my child's
health. I learned that congressional
investigations were underway into key
members of the Food and Drug
Administration and the Centers for Disease
Control who vote on U.S. immunization policy despite a web
of conflicts of interest: panel members who owned stock in
vaccine makers, received research grants from those
companies or even owned vaccine patents themselves.
I found out that vaccines given to my child had unsafe amounts
of mercury, contained in the preservative thimerosal: a fact that
led to the introduction this year of new "thimerosal-free"
vaccines. I learned that last year a rotavirus vaccine was rushed
to market too soon, without enough research, and had to be
suspended by federal health officials because children were
experiencing life-threatening bowel obstructions.
But it was during a conference this June that I crossed over to
the other side, from conventional mom to vaccine-reform
advocate, and began sounding more and more like Mulder in
"The X-Files," saying to anyone who would listen, "The truth is
out there."
At an autism conference in Irvine, Calif., I heard the first theory
that made sense to me intuitively, not just about autism but
about other children who were sick, children I could see
around me every day, children of my friends, the "typical"
children who shared my son's classroom. Respected doctors
and researchers presented evidence that the rise in autism over
the past decade was related to immune system impairment,
part of a spectrum of other childhood illnesses on the rise such
as allergies, asthma, ADHD, learning disabilities and seizure
disorders.
What was causing the immune system to turn against itself? The
research was pointing to bombardment by multiple vaccines
that overwhelmed the immature immune systems of infants and
toddlers.
Secrets and lies | 1, 2, 3, 4
My son Connor was a perfect baby, the kind you see in
commercials: engaging, happy, angelic. I had a normal delivery
after a pitocin-and-epidural labor, and Connor scored a 9 on
his Apgar, nursed vigorously, never had colic, smiled early and
even laughed in his sleep at six weeks old. We figured we were
doing everything right. When he got sick with his first ear
infection at three months -- the first of many to come -- we did
what most parents do: We relied completely on his doctor for
treatment.
The American Academy of Pediatrics cautions against
vaccinating children who are sick. I didn't know this policy at
the time, and apparently neither did anyone in the doctor's
office, because I was never told about it. What I did know was
that he was supposed to get 33 vaccines before he started
school, many of them simultaneously. My refrigerator magnet
"freebie" of the vaccination schedule, included along with my
complimentary diaper bag and free formula from the hospital,
showed that he would be receiving as many as eight vaccines at
the same time: combined measles, mumps, rubella (MMR),
combined diptheria, tetanus, pertussis (DPT), polio and
haemophilus influenzae type B. It seemed like a lot at one time,
but I was simply grateful that the combination vaccines meant
he would have fewer overall injections.
The ear infection and vaccination pattern
continued unabated during Connor's infancy
and into his toddler months. His reactions to
vaccines ranged from nothing to crankiness
to occasional fevers. All of these reactions
were considered normal, and all of them
passed within a day. The ear infections
became harder to treat over time, as if
Connor's system was building up an
immunity to the frequent antibiotics.
One day in June of 1998 I noticed that his
left ear was pushed out from his head. I had
no idea what it meant but I took him to the
doctor. Despite being on antibiotics, his
latest ear infection had progressed into
mastoiditis and he was rushed to the
emergency room to get tubes in his ears that
same day. The ear infections ceased. But an
illness remained with him that was far worse
than we had ever anticipated.
Much of his first year had been a period of
triumphs. I marked his skills in my dog-eared
copy of "What To Expect Your First Year,"
noting with satisfaction that he was hitting all of his milestones
early. I could see that he was a sharp kid, alert to the world
around him, and I was proud of his precocious awareness. This
ability to focus extended to people as well -- he was
compassionate and gentle in his temperament, possessing an
unusual insight into the moods of the people around him. I
honestly believed he showed early gifts of self-awareness and
sensitivity to others.
Around his first birthday everything began to change. Connor
regressed in his social behavior and speech and seemed to lose
ground on all of his milestones. We had trouble getting his
attention. We would call his name over and over again and
finally had to look him in the face to get a response. At his
birthday party, he was more interested in his balloons, ribbons
and boxes than his new toys or the people celebrating around
him. He would play with his toys repetitively and in unusual
ways, like flipping over his bubble lawn mower to spin the
wheels or rolling objects down a ramp for 30 minutes straight.
Family members commented jovially that he might be a physics
or engineering prodigy, already testing objects to see how they
performed.
But when his language started to deteriorate, we lost any hope
for his Nobel Prize and wanted desperately for him just to act
normal. At 22 months he was mute; instead of pointing or
naming things, he would lead one of us by the hand and place it
on the thing he wanted. He preferred to watch the same video
of "Thomas the Tank Engine" all day long rather than play with
us. When people came over to our house he was shy, more
than shy -- he would run away and hide -- and if we forced
him out he would throw his body to the ground and scream.
I could see that the core of his real personality was still there,
but I could only bring it out in him when he was totally at ease,
which meant without distractions or interruptions in his routine.
Even his diet changed for the worse. He would only eat about
five foods -- crackers, Cheerios, McDonald's French fries,
chips and cookies.
Time to take Connor back to the doctor, I thought. He'll know.
He'll confirm my mom's intuition that something is very wrong.
But he didn't.
"He used to talk and now he's quit talking."
"Well, he's been sick from the ear infections. Have you
considered having his hearing tested?"
"Yes, we thought of that. His hearing is normal. I'm also
worried that he's only eating a few foods, and he's not getting
any vegetables and fruits anymore."
The doctor laughed. "My kids are extremely picky, too. As
long as his weight is OK -- looks like he's in the 80th percentile
-- I wouldn't worry about it. Toddlers are very finicky. As long
as he's getting a multivitamin he's getting everything he needs."
Meanwhile Connor is flapping his arms and spinning in circles. I
watched for a while. "So he's OK?"
My doctor's forte was reassuring worried moms. "Of course.
He's fine. Let's see him again in a month and make sure his
weight is on target."
As it turned out we didn't see the doctor again for a few
months. By that time Connor's day care staff had evaluated his
development and determined that he was autistic.
Months earlier, when we hadn't suspected any problems, I had
enrolled Connor part-time in a day care program that mixed
typical kids and special needs kids. My mother was physically
disabled, and I wanted Connor to grow up in an environment
that didn't exclude the handicapped. As it turned out the
decision was a blessing -- the staff therapists had seen plenty of
autistic kids, unlike my doctor, who had never seen even one
(and who admitted humbly, later, that he only got three days of
education on autism in med school). But the day care staff was
able to diagnose him earlier than many kids with the same
condition, which was probably the key to Connor's eventual
progress.
I remember very clearly my first reaction to
the label of autism: "But my kid's not Rain
Man." And he wasn't. When I started
reading I found out the real statistics on
autism, and they were scary. There was a
new crop of kids who had what many called
"acquired autism." Unlike Dustin Hoffman's
character, the kids progressed normally until
their second year and during that period lost
any accumulated skills and socially retreated
from people.
The late-onset kids made the current genetic
theory suspect -- if the cause was inborn, the
kids would never have gained ground in the
first place. Plus, the rate of these kids was
staggering: In 10 years the incidence of
autism had increased from one child in
10,000 to one child in 500. No one was
sure why.
So I continued to go to doctors --
immunologists to help me understand why
Connor's mosquito bites took six weeks to
heal; neurologists to explain why his IQ was
so low it couldn't be measured; allergists to tell me why his
cheeks and ears got red when he ate certain foods;
gastroenterologists to relieve his constipation. Over and over
again I was told that the outlook for autistic kids was grim,
there was no treatment available for his symptoms, that
perhaps I should consider putting him (and myself) on Prozac
to help with his behavior.
Frustrated by the lack of sympathy and knowledge in the
medical community, I networked with parents on the Internet
and read as much as I could on my own. I decided to focus on
cures instead of causes. Some parents had actually been able
to "recover" their children with behavioral therapy, or ABA.
This therapy used a one-on-one approach to teach autistic kids
how to interact in the world, to talk, to socialize, to learn
academic concepts, to regain the skills they had lost or never
developed. We started within weeks of Connor's diagnosis. In
my heart and in my prayers I asked for one thing: Please,
please let him say "mama" to me again.
And, amazingly, he did progress. One of Connor's doctors,
who had seen the results of the therapy with her own eyes,
agreed to write a prescription for this treatment, and I sent it
along with my claims to the medical insurer. The claim was
denied because the therapy was considered "educational." We
continued to spend around $2,000 every month on behavioral
treatment anyway. It was the only thing that was working.
Within a year Connor began talking again, regaining his old
words first: mama (Yes!), daddy, cookie, no. Then he had a
cognitive leap when language finally seemed to "click," and he
was off and running. He sought out adults and other children to
talk to and play games with, caught up to age level in
comprehension, bypassed his classmates in academics, and
even developed a sense of humor (he renamed "Carnotaurs
from Disney's "Dinosaur" movie to "Connor-taurs").
In March of this year he finally lost his autism label, after a year
and a half (at 25 hours per week) of intensive ABA. His
speech was still a year behind, but it was appropriate, and his
therapists predicted that by the time he started first grade he
would have the same basic skills as his peers. I breathed my
first tentative sigh of relief -- he had a chance of living a normal
life.
It was only then that I began to focus attention back to the
cause of Connor's condition, and listened with interest to the
congressional hearings on autism in April, spurred by Rep. Dan
Burton (R-Ind.), chairman of the Committee on Government
Reform. Burton had almost lost his granddaughter to
anaphylactic shock after her DPT vaccination, and lost his
grandson to autism within a week of the child's receiving 11
vaccines administered in a single office visit.
I read the media coverage, too, most of it from medical
professionals who pitied Burton's situation, but tended to
dismiss him with red herrings, "out-sensationalizing" Burton with
claims that not vaccinating children would lead to outbreaks of
life-threatening diseases. (A recent Newsweek story does this
too, ending on the note: "Autism aside, the measles virus can
kill.")
But Burton wasn't interested in eradicating the vaccine
program, just in getting some answers about the rise in autism.
He asked CDC representatives about their investigations of the
Brick, N.J., township where the autism rate was dramatically
higher even than the rising national average. He wondered
aloud about California Department of Developmental Services
statistics, now replicated in many states, that reported a 273
percent increase in autistic kids in the school districts.
Autism was an epidemic, Burton insisted to the CDC. What
are you doing about it?
The vaccination issue had come up many times in online chats
about autism, but I didn't think it applied to me. Unlike many
autistic kids, Connor was not whisked away to the emergency
room after his MMR (mumps, measles and rubella) vaccination
for seizures; he didn't "turn" autistic within hours of his DPT. He
had a few mild reactions, nothing more.
But I didn't discount the parents' claims: I knew these parents
personally and respected their judgment. Many were doctors
or research professionals themselves. The only thing that
connected a lot of us was a common history of chronic
infections, mainly ear infections, and consistent doses of
antibiotics.
I decided to attend a conference on autism
and learn more about the biological research.
Before I left I went through Connor's photo
album. I did this soon after he was
diagnosed, but perhaps I was too close to
him and too ignorant of autism to recognize
dramatic changes. This time, I saw it:
Connor at 11 months, smiling for the
camera, looking into his daddy's eyes,
touching his mommy's hair. Connor on his
first birthday, after his morning visit to the
doctor's office and MMR vaccination, no
longer looking at anyone, no longer smiling.
And perhaps the most revealing picture:
Connor walking on his toes, one of the most
common behaviors in autism. Within a day
he had changed.
The conference speakers presented the
theory that autism was part of a spectrum of
related immune disorders on the rise in
children. The immune dysfunction in the
body was triggered by reactions to multiple
vaccines, either an ingredient in the vaccines
themselves or the accumulated damage of multiple vaccines to
the immune system. The body reacted by attacking its own
cells, an "auto-immune" response, with reactions in the body
ranging from mild allergies and behavioral changes to severe
neurological damage such as autism and seizure disorders.
This evidence made a lot of sense to me because I was seeing
these kids with my own eyes everyday -- friends of mine
whose kids were prone to severe allergies, asthma, attention
and learning problems, all with no family history. When I was
growing up, there was always one kid in the classroom who
was allergic to eggs, who had circles under his eyes and pale
skin. I never saw an autistic kid at all. Now I look around and
see sick kids everywhere.
Dr. Andy Wakefield's presentation was particularly compelling.
A respected gastroenterologist at the Royal Free Hospital in
London, he had been minding his own business studying
inflammatory bowel disease and Crone's disease when he
encountered something very curious that he hadn't seen before.
When he tested the growing number of autistic children who
had come in with bowel problems, he noticed that their GI
systems were damaged as if they'd been diseased for years.
Wakefield listened to parents about the late onset of
symptoms, the similar stories of regression and the parents'
belief that vaccine damage may have caused the problem.
When he ran more tests on the children he found measles virus
in their GI tracts, where it wasn't supposed to be. He published
preliminary findings in a respected British medical journal, the
Lancet, and immediately came under fire from colleagues in the
U.S. and UK.
As I listened to the evidence Wakefield had gathered, I looked
around at the other parents. There was no commonality among
us -- we were of all races and ethnic backgrounds and
geographically spread out. A few of us had a genetic history of
autism or allergies but most of us didn't.
If you controlled for all of these factors, what common link was
there? Controlling for genetics, allergy histories in families and
environmental toxins from varied geography, there was only
one candidate left that applied to all of us -- a mandated
vaccine program. Industrialized countries like the U.S., the UK
and Canada were experiencing this tremendous rise in autism
and other neurological disorders. And these were the same
countries where modern medicine flourished.
Interestingly, Japan didn't figure among the other countries' high
increase, and had withdrawn the MMR in 1993 because of
concerns about adverse reactions. I started to become uneasy.
"I'm going to ask everyone a question," said the conference
host after Wakefield's talk. "How many of you here believe
your children have been damaged by vaccines?"
Seventy-five percent of the attendees stood up and raised their
hands. One woman a few rows behind me was crying, and I
knew intuitively that her faith in the medical establishment had
finally crumbled. Her suffering was genuine; she sobbed quietly.
When I looked back, she was embarrassed, covering her face |
