A Willingness to examine the evidence and live a good life

(This started out as a post about the IOM and its 2004 review of the evidence regarding vaccines and autism, but it twisted and turned on me into something more reflective, something that, to no surprise to those who read me regularly, sums up my position, well, on life and living it despite all the bad shit that comes one's way).

In 2004, the IOM released its eighth and final report regarding vaccines and autism. The members of the committee looked at all the research, including that provided by those arguing that there is a link, and concluded that there was no evidence of a link. None. At all.

I've brought up the Immunization Safety Review: Vaccines and Autism repeatedly over the last several months whenever the vaccines-stole-my-child crowd argues that it hasn't been looked at, that the government and big pharma are in collusion with each other, the 14 studies garbage that Handley put out to argue that the science had actually spoken (you know science doesn't speak, right? That might be one of the problems.). This 215 page review has been out there for FIVE frakking years. Five years. I don't get it. I really don't. You know, the no-really-I'm-for-safe-vaccines crowd can't argue that they are scientifically literate if they refuse to even read the evidence, refuse to read the best and brightest scientists who have read all the evidence and reached a conclusion that the damnit-I-don't-know-what-it-was-but-it-sure-as-hell-was-something-in-the-vaccines crowd doesn't want to hear (la-la-la-la, I can't hear you!).

If you are one of those parents who are just too darn lazy to read it, I'll provide some snippets (I assure you, friend who's no longer speaking to me, not taken out of context - you can quote a line or to without changing its meaning) for your perusal.

The abstract sums it up:
The committee reviewed the extant published and unpublished epidemiological studies regarding causality and studies of potential biologic mechanisms by which these immunizations might cause autism. The committee concludes that the body of epidemiological evidence favors rejection of a causal relationship between the MMR vaccine and autism. The committee also concludes
that the body of epidemiological evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism. The committee further finds that potential biological mechanisms for vaccine-induced autism that have been generated to date are theoretical only.
The committee does not recommend a policy review of the current schedule and recommendations for the administration of either the MMR vaccine or thimerosal-containing vaccines. The committee recommends a public health response that fully supports an array of vaccine safety activities. In addition, the committee recommends that available funding for autism research be channeled to the most promising areas. The committee makes additional recommendations regarding surveillance and epidemiological research, clinical studies, and communication related to these vaccine safety concerns. (IOM, 1)
Nonscientists look at things from a predetermined perspective. Many of these parents appear to have reached a conclusion and examine it from that perspective. They don't go in open-minded; they don't, despite assertions to the contrary, go looking for the truth. They come up with their theories for why something happened without even considering they might not have the knowledge base to accurately assess the situation. Google is awesome, and being able to access studies is tremendous. I'm all for pursuing knowledge, but the problem with self-education is that you don't know if you don't get it; a college education at least provides some feedback for when you are off track. If you are not getting that self-acquired knowledge vetted by experts in the field you're studying, you can go so far off track so as to be helplessly mired in woo. Complete and total woo. And it can be doubly damn hard to conclude who the real experts are. I mean, if they've got an MD or a PhD, they can't be completely wrong, can they? Well, yes, they sure as hell can. Wakefield, Geier, Mercola, Blaylock, Haley, Hyman, Gordon anyone?

To explain how they began their review of the literature, the report states:

The committee begins from a position of neutrality regarding the specific immunization safety hypothesis under review. That is, there is no presumption that a specific vaccine (or vaccine component) does or does not cause the adverse event in question. The weight of the available clinical and epidemiologic evidence determines whether it is possible to shift from that neutral position to a finding for causality (“the evidence favors acceptance of a causal relationship”)
or against causality (“the evidence favors rejection of a causal relationship”). The committee does not conclude that the vaccine does not cause the adverse event merely because the evidence is inadequate to support causality. Instead, it maintains a neutral position, concluding that the “evidence is inadequate to accept or reject a causal relationship.” (IOM, 2-3)
What is a parent who just wants some answers to do? Who are you supposed to trust? It sucks to hear news you don't want to hear. It sucks to be told that the causes of autism are not all known, to hear that there are no cures for what seems like a life sentence to a parent newly going through that diagnosis. And I know from personal experience that it really bites to be told when your wee one is five years old that he isn't going to achieve independence and that the best he can hope for is a group home. It sucks even bigger to then spend 15 years working for thousands of hours with that child to try to change that prognosis and not be able to. It does.

I am so grateful that Bobby's autism was diagnosed before the internet was really out there, before all these wackaloon theories were devised, before Wakefield. Before secretin. Before all this wooquack, DAN doctors, HBOT, IVIG, chelation and Yasko or PK protocols were out there. Before there were charlatans promising me a cure if I just drained my pocketbook over to them. It meant that over the last three-four years as my daughters' autism became unavoidably apparent that I didn't go to the woo. I'd already had a decade and half with my son to know that nothing would replace hard work and that even then, no miracles, no instant cures, were out there.

The closest I came to it (woo) was to follow the GFCF diet for four years, starting when my littlest was barely more than a year old. And we followed it, oh how we followed it. And it seemed to do wonders for Bobby. Suddenly at 14, he began to read within months of starting the diet. There we were; I'd worked for 8 years to teach him to read, and suddenly it clicked and within a year of being on the diet he could read Harry Potter. Success, right? Had to be the diet, not the 8 years of work and a brain that finally made the neural connections, reached the matural level needed, right?

We went off the GFCF diet in March. Bobby had the last couple years of it slipped off of it occasionally, with no loss in functioning. The girls and I never slipped (we had started it because the girls and I had intestinal issues), but in March I decided we'd try. And what did we find? Well, that eating the gluten and casein made us not a bit sick (or in my case any more sick) and all a hell of a lot happier. No loss in skills, no loss in functioning for any of the kids. It was an expensive lesson that correlation is not causation and that psychological investment in an idea can cause a person to make decisions that are completely pointless and not at all tasty.

I understand wanting a child who is going to fulfill all of the things loving parents want for their children. I know firsthand the pain of watching your child's peers pass them by. I have felt the heartache as each milestone is missed, as the years slip by and the progress does not come. I know and fully understand the pain involved with being the parent of an adult child whose disabilities preclude him from achieving independence and all of the adult milestones we wish for our children. I know the fear a parent feels regarding their child's future. Who will be there to care for my child when I can no longer do so? And I feel that fear for all three of my children as all three are on the spectrum, and no matter how smart, how "high functioning," independence is not a guarantee, not something a parent can just assume will happen.

Now, you have a choice as a parent to a special needs child, to special needs children: you can deal with it adaptively and allow yourself and your children to make good, productive happy lives despite the limitations or you can rage, rail, and be miserable and make your child miserable. Really.

You can be a victim, make your child a victim, act like a martyr and be miserable, making those around you miserable. Or you can choose differently. You can choose to find the beauty that is there in every moment, even the literally shitty ones. You can make the best and teach your child(ren) that obstacles and hurdles are things to be overcome, that perseverance and grace are things that can be found even when you are unbearably weary of the road you are on. You can teach them that shit happens, but it doesn't have to ruin their lives. It doesn't have to stop them from reaching their potential or you your potential.

Stay in the woo or come into the light. Stay in the anger or leave it behind. I'm all for fighting the good fight, but make damn certain it's the right fight.

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