Secrets and lies

[Guest guest]

http://www.salon.com/mwt/feature/2000/08/02/autism/index.html

 

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.

 

We relied completely on his doctor for treatment

 

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. "

 

" But my kid's not Rain Man! "

 

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?

 

I was seeing these kids with my own eyes every day

 

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 Crohn'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 with her hand.

 

But I was moved by her anguish, her private suffering, and I relived

for a moment my own struggles since Connor's diagnosis. The long

nights of guilt I felt as a mother, constantly wondering what I had

done wrong to give him autism; the long days of research to find a

cure -- the doctors told me to put him in an institution, but I wasn't

going to leave him; the countless doctor visits and tests Connor

bravely endured without understanding why he was hurting or receiving

little relief.

 

And finally -- unsurprisingly -- I was overwhelmed with rage. I felt

it building within me and it was like nothing I'd experienced before.

I knew very clearly at that moment that I had crossed over to the

other side, that I was convinced my son was a cash cow for an industry

that tested its products in production rather than the lab, motivated

by $2 billion per year in profits, no different in its potential for

corruption than any other industry.

 

There were no higher standards in medicine than in any other business

-- the rule of caveat emptor applied to vaccines as surely as it

applied to any other consumer product. I could not trust the FDA and

the CDC to protect me from pharmaceutical companies that wanted to get

their products to market with as little testing as possible and to

promote the repeated use of their products in order to maintain their

monopoly under the guise of the public good.

 

I don't have a medical degree, but I have learned how to be a

thoughtful medical consumer. Connor's up for his mandated boosters

next year. I know now that he can have a simple blood test of his

antibody titers, which measures his antibodies and confirms that he

has the protection he needs against disease. I had the blood test done

and he's protected.

 

There's no medical exemption from these boosters in my state for

" sufficient protection based on antibody titers, " so I'll have to use

a religious exemption instead. I've accepted that there is no binding

contract between me and the agencies and companies that purport to

protect my child. But my bond with Connor remains, my responsibility

as his mother expanding to include advocacy -- even activism -- along

with love.

 

salon.com | Aug. 2, 2000

 

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About the writer

Lesli Mitchell is a writer and editor who specializes in education and

technology. Her children's book about autism, " Party Train!, " will be

published in September by DRL Press.