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IOM:  A Parent's Perspective

Time for our own editorial perhaps—the honest kind. I mean, I'm an honest person, or at least try my darnedest to be. I'm sure you're honest, too, as most parents with sick children are. I'm too proud to be a hypocrite and too open-minded to be too proud. So what I'm about to say might come off as some sarcastic rant as a result of four years of sleep deprivation, but I can assure you, every bit of it is based on my own observations. Lack of sleep doesn't make them any less honest.

Three rows back to the right is where I sat that day. The Institute of Medicine's hearing on vaccines and autism. When we walked in we were told the IOM committee had received death threats from parents—security was increased. I personally wasn't frisked or sent through a metal detector, no one was come to think of it. But I'm sure some person out there was dumb enough to make that sort of call. A threat on someone's life is inexcusable. As a result of this lame action, we all get painted with the same brush---the "crazy, irrational" one. Heck, we don't even know if it was a parent of an autistic child. That's what we were told, but how do we know for sure? Could have been anyone. Of all people, we should know that you can't simply report something and be given the benefit of the doubt. The facts must present themselves first. Either way, credibility gets lost with us. What a shame. One reporter at the IOM said they received 11,000 "nice" e-mails from parents of autistic children after they ran a very balanced story. I guess we're not so small after all. I guess we're not all hateful either.


Speaking of reporters, there was one that sat behind a few drug company reps at the IOM and was kind enough to tell us what they saw: Merck employees rolling their eyes, snickering at each parent that got up to speak. This reporter had nothing to gain or lose by informing me of this. I believe this person, as a result, I'm left shaking my head. Call us what you wish, but we still deserve respect. Why? Because we're dealing with what those people would never want in a million years. Our children are sick. Their children won't have the problems our children have because of our fight. Lucky them. I’m wondering if Wall Street Journal would ever report their behavior. Perhaps the news department would where the journalists sit, but not the editorial department. I spoke to an actual WSJ journalist at IOM. Nice person. Quick to tell me they weren't with the editorial department—asked me about my child. I don’t doubt the WSJ editorial department received hate mail. Threatening mail, again, is inexcusable. I envy them, though, the editorial department that is. They have an open mic. Imagine what we could do with that. They could be using it to do so much good, pushing for a cure for autism, instead of continuing the controversy and politics for which they happily blame us.

My opinion? Some members of the IOM Committee have already made up their minds. Some had their minds made up before they hit the door. Dr. Berg, who is on the committee, spoke to KIRO-TV a few days back, and was "reassured" of no link. Regardless if he was talking about IOM or something else, it seems we already know how he feels. And not because the science that supports a link between thimerosal, the measles virus and autism isn't there, rather many people simply don't want it to be.

Epidemiological evidence is about as solid as wet clay. Mold it however you want---it does what you tell it. That's what they're doing, when they're not looking the other way. I don't feel these people are outright liars. I don't feel these people are malicious and hateful. I simply believe they want it to be what they want it to be. They believe their own lie. They can justify it with the rationalization that parents need to vaccinate their children, no matter what. And, anyone who questions the safety of immunizations is anti-vaccine and must be silenced. It's that simple.

The professor from Columbia University, Mady Hornig, was excellent in my opinion. She showed video of rats that developed repetitive behaviors after being injected with thimerosal. One rat kept biting its tail over and over. The two rats constantly groomed themselves until one rat groomed the other rat's head so much, it punctured its skull resulting in a heinous death. But perhaps we’re just recognizing their rat behaviors better. Perhaps the rats are just quirky. Perhaps they suddenly showed characteristics of autism because of their rat genes. Everyone knows there are 1 in 150 autistic rats scurrying about. Perhaps all rats bite their tails, and one another, obsessively. Perhaps their mothers were just emotionless and cold. How else could this be explained? After all, it couldn't have possibly been the neurotoxin that made them act neurotoxic.

The speaker from Canada. Handsome, but had a presentation that left something to be desired. It was basically a compilation of push-pulled numbers. Canada is different from where I live---the schedules and dosages are different. Even so, this presentation didn't make me think, "Wow, they're right." In fact, the opposite happened. He tried to prove there is no epidemic. Even Paul Offit admits the rise is real. Not that his opinion matters to me---here's a guy who said the swine-flu vaccine caused cases of Gillian-Barre (an autoimmune disorder) only to later say no vaccine has ever caused an autoimmune disorder. When questioned about this, he said it wasn't the swine-flu vaccine that caused the autoimmune disorder, but something inside the vaccine. I take it thimerosal is outside the vaccine? Apparently someone compared him to Hitler. I was sorry to hear that---it's uncalled for. I must say, though, that if that's the worst of his problems, I'll gladly trade him. So would my child. He isn't actually that bad of a person. My opinion. I can tell he cares what people think of him. He cussed during his talk, with humor, which makes me think he's more real than people give him credit for. I often wonder why he's so blind. Perhaps it's simply his way of "saving" the vaccination program, even though no one is really trying to destroy it. Anyway, everyone else seems to love his opinion, so there you go. I'm sure he doesn't care what I think either.

Can you imagine how easy our lives would be if there was no link?...what if we could simply take Frist's path instead of Frost's? No more slaving to have the right thing happen. No more eyes rolled at us, no more names and accusations. No more fighting with, and for, others. Sometimes we do care about those things, or at least I do. I admit it. Truth is, though, I'd take another thousand jeers a day for another thousand years if it meant my child would be healthy. That's called sacrifice. You know it well.

The English doctor spoke eloquently and, if I'm going to be brutally honest, fell on the side of arrogance. We've been guilty of that, too. Her presentation, again, epidemiological, focused on the findings in the UK. The wet clay was molded nicely to say no link. Once again, we were presented with much smaller numbers than the US---different dosages and a different schedule. The Geiers addressed her figures in their presentation by saying that, as predicted, the UK had the correct number of children with autism as they would expect to see given the dosages of thimerosal received. It would have been ideal if Marie McCormick (no, not Maureen McCormick---that's Marsha Brady) would have allowed more questions from people like Sallie Bernard, Lyn Redwood, Dr. Deth, etc. Perhaps she had no choice, but I would think they'd want to hear the toughest questions answered. I did. Wouldn't that be the least we could do for the children in this world who have nothing but time? Again, I tried to be objective. I listened to the English doctor. She showed more personality than many, I liked that. Honestly, though, if that were a sales pitch, I wasn't about to write a check. She later said their (UK) DT shots were single-dose vials that contained thimerosal. No reason in the world would make me be okay with that. Next.

The Geiers. Great, aren't they? A father-son duo that doesn't leave realness at the door. Filled with personality and opinions, they presented their VAERs findings, also epidemiological. Six times more likely to get autism via thimerosal. The difference? They don't have much to gain from molding the clay in our favor. Only a lot to lose. Again, observation. As Dr. Geier stated, they would make more money if they were to testify for the other side. They get attacked by some members of CDC, they take time out to travel and don't get much for it. Their wardrobes don't scream “rich” to me. They picked hamburgers over gourmet food the last time they were here. They could be using their time to write a book on behalf of Merck. They're not. I like that about them. Why else would they be doing this? The spotlight? They talk to parents as much as they talk to the media. They're genuinely passionate, I say. Tell it like it is. Might hurt them at times, and sometimes I wish they'd tone it down. But they're doing this for the right reasons. Their clay sculpture wins the prize in my mind because their findings put the “logical” back in epidemiological. This means the rats were acting neurotoxic because of the neurotoxin. Our children reacted the same. Logical.

Let's face it. Thousands of us have the same story. It's not like we sat around a big table one day and said, “Hey, let's think of ways to make money off our children's head-banging...what do you say?” Great idea! What are we going to blame it on, Susie? Hmmm. Vaccines! Excellent. Jim, do you agree? Yes, I think vaccines are an easy target and it would be nice to blame something else for a change besides ourselves…plus, I'm still in denial. Okay then, let's put a mass e-mail out to ten-thousand parents instructing them to blame their child's neurological problems on vaccines with the exact same stories and symptoms as ours. After that, we'll all fight to get into the National Vaccine Injury Compensation Program...a program that turns away three out of four cases and appeals their own awards if an award even happens. We won't get a penny, but let's do it! Then, we'll try civil court—sure, they'll kick us out, but let's say a miracle happens and we get a million dollars. Great! We'll pay off our medical bills and may have enough left over to take a trip to Hawaii. Of course, our children will have to be sedated and won't be able to eat the entire trip...they might have explosive diarrhea on the plane mixed with incessant shrieking, hitting and biting. They won't sleep the entire time and we may run the risk of them escaping from the hotel room and drowning in the pool or playing in traffic, but we're willing to take that risk—we're crazy and money-hungry after all. We'll all be single—the divorce rate is what, 90% in our community? No problem. We'll all be too tired to drink Pina Colada's, but what the heck? We're in the mood for a good luau. And on our way to riches, we may be called names such as “small,” “loud” or “intolerant,” but we like these names. We love biased reporting. We think it would be fun to spend our own money to travel to Washington every month and inspire politicians to believe our massive lie and accept our evil master plan. We'll create a big feud between them. Sounds good. Senator Frist will then try to keep the rich from being less rich. After all, drug companies need millions for advertising—our sick children shouldn't get a penny of that. And the money they're making off our children with drugs like Strattera pays for their luxury cars and leather furniture. It wouldn't be fair to take from them what our children give to them, right? But still, we'll fight Bill Frist in all our spare time. We have gobs of it. Wow, what a great idea.

Dr. Davis presented the VSD study that was released in Pediatrics indicating no link between thimerosal and autism. He disputed the Geiers’ findings of the 27 Relative Risk (RR) by saying they looked at the same dataset as the Geiers and found only an 18 RR, but that once all the confounding factors were considered (like older, more educated mothers and the like), they found that thimerosal actually had a “protective” affect on children. Wonderful! Give my child some more of that. We were left shaking our heads. I'm guessing the rats would have done the same, if they still had heads.

DeStefano’s presentation. MMR epidemiological which found no correlation. He’s the co-author of the latest CDC VSD which wins the award for most creative clay sculpture, much more innovative than the 2000 one, and less hidden.

Then, the Denmark guy. Boy, was he afraid of the cameras or what? His findings had nothing to do with the US or our autism problem. Many doctors and parents lined up at the microphone for this guy. They made sure the press knew that the Serum Institute was conflicted because they have many connections to the Denmark Vaccine Program. The CDC also helped fund this study. Yeah, there're lots of flaws in it. Is RhoGAM or any other pregnancy shots given over there? If not, how in the world can you compare by that alone? You can find more at http://www.safeminds.org/sfpub/danishanalysis/danishanalysis.html. Happy reading.

Vasken Aposhian...the toxicologist. Don’t worry, I can’t pronounce his full name either. Made me laugh—had that Christopher Lloyd quality about him. The poor guy admitted he didn't want to be there. He told the committee thimerosal might be causing autism. He said the theory has “become more plausible than when your committee first discussed this.” You could tell he didn't want to it be true. Thanks, Vasken Aposhian, for not being in denial.

Okay now. I think even the committee couldn't keep up with Dr. Baskin. Whoosh! Right over everyone's head. Basically he presented his research that showed thimerosal causes cell death. Very compelling. Don't call him a neurologist though. Neurosurgeon. I dig him.

Dr. Polly Sager presented a primate study. She showed how the monkeys were able to rid themselves of the thimerosal properly with no damaging effects. Seemed like a nice lady. I recall sitting in my chair during this wondering...did she survey the monkeys ahead of time to get a family history? Girl monkeys or boy monkeys? How old? Any predispositions? It was the equivalent of sticking typical kids in a room, watching them behind a two-way mirror, and concluding they're not autistic. Well I could have told you that.

He didn't mean to be funny, but Boyd Haley made me laugh when one committee member asked, "So, are you saying the epidemiologists are lying?" He simply replied, "Well, yes." What? Is that not possible? Of course it is. Just ask poor Dr. Needleman when the neutral scientists destroyed his work on lead and disabilities in the 70's. They discredited him in every way possible, even brought him up on charges of scientific misconduct. Those "neutral" scientists were later revealed to be hired by the lead industry. Read about it if you'd like: http://www.pbs.org/now/transcript/transcript117_full.html. Lying happens—I hate to break it to those who might not think it's possible. Money sometimes buys science. Why should this surprise anyone? Boyd demonstrated why boys are more susceptible to autism than girls. With a 4:1 ratio, Haley concluded that thimerosal is actually fueled by testosterone, while estrogen acts as a protector from the toxin and presented research that children with autism cannot detoxify heavy metals as easily as the rest of the population. He also showed that autistic children do not detoxify like regular children and, because of this fact, they hold onto the thimerosal which eventually makes its way to the brain and causes neurological disorders. And what does he have to gain by all this? Other than the gratification of being honest, I can’t think of one thing. Believe me, I’ve tried.

Dr. Bradstreet...as real as they come. He not only discussed his research findings, but was able to bring together many different theories including Deth’s, James', Haley’s, Wakefield’s, and Geiers' research into one presentation. He spoon-fed the IOM panel what they needed to hear to make the important decisions they need to make. He had to go very fast to cover it all. But let's go back to the hair for a minute. Okay, so you have this hair study where the autistics have no mercury and the controls have much more. The conclusion is that mercury cannot be excreted by the autistics. So, is anyone over at the CDC willing to duplicate this study? Denmark man, how about you? Other than the monkey study, which was weak…seriously, all they have is epidemiological. Wet clay.

Dr. Singh. He reminded me of all the times I've read that certain article in a parenting magazine. You know the one..."Allergies are on the rise, experts think it might be something in the environment," or, "What's causing the rise in autism? Experts say it might have something to do with the environment." Okay then—what? What's in the environment? Is it just me or should the people saying these things be a little more focused on getting that answer? In any case, Dr. Singh found that children with autism had elevated antibodies to the measles virus (vaccine strain) and Myelin Basic Protein which may lead to autoimmune disorders. This I do not doubt—he did a great job. Powerful. Could thimerosal cause this to start? Any theories? Throw me a bone...anyone? According to Paul Offit, it's, "Something that happens pre-natally." Okay then, what? RhoGAM, flu and other immunoglobulins are pre-natal...they have thimerosal…should he change his theory to, "Something that happens pre-natally, unless it's thimerosal"? I’d really like to know for my child's sake.

So let me get this straight. Back in the day of Bettelheim, us moms were emotionless and this caused our children to be autistic. Now, according to Katz, certain CDCer’s, and AAPer’s, we're too emotional which has caused us to desperately grasp for something to blame, like vaccines, for our children's autism. Okay. But, if we're not doing it for that reason, then it must be because we're money-hungry. Even though the people who are calling us “money-hungry” are making money doing their jobs while protecting drug companies from losing money, along with those making money working for a publication that mainly focuses on money. But, if we're not blaming vaccines based on emotion or money, it must be denial, even though the people who accuse us of being in denial think rats can develop fatal repetitive behaviors by simply sitting there. And if it's not emotion, money or denial, then it must be because we're crazy, even though we're not the ones who put a known neurotoxin in infant vaccines and pregnancy shots in the first place. All of this makes complete sense.

My child has a RhoGAM lawsuit. If you think I'm in it for the money, see paragraph ten. I’m more interested in the discovery phase if you must know, and no matter what happens, it still has to come down to what’s causing the epidemic. Any takers on this? Paul Offit? Paul Gigot from WSJ? They don't want us to go to court, okay then, let's put the ball back in theirs. Stop focusing on what you say hasn't caused the epidemic. The classrooms are filling up. I was just told that North Carolina once again is restructuring to compensate for all the disabled kids—the kind we were too stupid to recognize as disabled thirty years ago according to many. We're running out of money, we've got a big problem. So where are the studies naming the environmental factor? Surely they must have some theory as to what it is. Let's hear it. Show us these studies.

Speaking of my son’s lawsuit, I have to say that trial lawyers are just plain evil. Take our lawyer for instance. She came to a fundraiser, watched a video with sick kids riddled throughout, had tears streaming down her face, and later asked for the video so she could show her staff "why we’re really fighting for these children." A terrible person indeed. She wrote the other day, asked me how my son was doing. Again, terrible. Well, he's getting better. I said it before, I'll say it again...we have the older parents to thank for that. Those people fought long and hard...never took a seat. And it's humorous to me every time someone recognizes that my son is doing much more at an unusual pace. You know the ones. "So what have you done differently?" they always ask, which is quite nice actually. And then I'll tell them, "We put him on digestive enzymes—he's much happier, talking more, not so many GI problems." Then, the look, as if I just said, "Well, we bathed him in chocolate pudding while singing the National Anthem, then stood him on his head for eleven seconds." Note to self: continue telling them what they don't want to hear instead of what they’re comfortable with which would be, "I don't know,” or, "We increased his speech therapy."

Public opinion is a funny thing. It's the strongest force out there over money, research, politics. We can try to scream and shout, but at the end of the day, people have to learn for themselves. I wouldn't want the numbers to drop if I were the CDC. That might sway public opinion and, out of everyone, we have the least to lose. We've already lost everything. Unless we gain back our children's health, we have nothing to gain either. So who's right? One thing's for sure, if they can't tell us what's causing it, they're not right. But as long as our children get better, as long as they someday have a friend, as long as they're not the target of sexual predators, as long as they're no longer different among the different, as long as they have a chance at life and don't die before their time because of this cruel disability, as long as other children are spared, it really doesn't matter. Not to me. Not to you.

Still, time will tell. And that’s that. Honestly.

Lori McIlwain

*This opinion is that of the author and doesn't necessarily reflect the opinions of the National Autism Association.

 
 

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