12/11/2009

Frak! Orac (rock) and Craig (hard place): Watch me wriggle!

Crap. Man, integrity, principles, pain in the ass. I thought  it was difficult when Ken and Craig post here, but Orac's new post feels like it was designed to make me squirm.

I'm consistent in my positions on autism and vaccines. I'm consistent in my desire and intention to be a positive support to people who need it and want that from me. And I can't call out to Craig to stand up to AoA when they are over the line and not stand up for him when I know that what someone else has said is going to throw Craig into a tizzy, and I can see why.

So, here is my effort to act with integrity and be a friend. I guarantee no good can come of it, but I tried, and I hope that's enough.

What I wrote first and put here instead:

Congrats on five years of blogging about and combatting pseudoscience and woo.


I'm a babe in the woods at this, in comparison, but I hope to be here still plugging away at the twin concerns of countering misinformation about autism while offering support to those on the spectrum and their families (and branching out beyond that to be of service to the disabled community as a whole, with the help of some very fine friends).

I have three children on the spectrum, and since my oldest will be 20 in a few days, I was lucky to completely avoid all the competing causation ideas and all the woo and focus on caring for my son. By the time my daughters came along 12 and 14 years after their brother, I'd heard of the vaccines idea, did my reading of the science first, looked at my kids, my husband, me, our extendeded families, went, "well, there you go" and moved on to helping my girls. My son is a joy, but is severely enough disabled that work and independent life are not going to happen for him. My daughters, well, we'll have to see.

I share this so that folks will know where I am coming from as I proceed. I know what it is like to look towards the future and realize that my son will be with me the rest of my life, my responsibility, that my daughters' futures are uncertain, and I can understand that many would despair in the same situation. I can look back at the years of very real struggle, the need to understand, the need to do something, and again understand the despair that many do feel. I can understand how easy, how compelling Age of Autism with its certitude and righteous anger would appeal and how once in, and in groups and forums like it, the anger, the despair would only grow. The group polarization is intense.

Ready answers, "this, this is what did it," provide a place to lay blame. They offer this and a host of try-my-products guaranteed to recover your child.

Orac, you've certainly had longer interaction with Craig than I have, so you know quite rightly that having written this will only enflame him more as he will take this to be calling him a liar: "First, vaccines didn't cause your child's autism and other problems. They just didn't; science is clear on that. Your anger, as understandable as it is, given your stressful situation, is misdirected and misguided." He will take this as your denial that his son had an adverse reaction, which he has detailed many times in many places. And it will, coupled with the kool-aid remark, make him pretty angry.

I don't believe, based on the science, based on the IOM's 2004 report reviewing the science, and based on the research into autism itself, which shows that it is similar to mental retardation and multiple congenital abnormalities in that there are underlying genetic causes coupled with in utero trauma, that autism is caused by vaccines.

I, do believe, though, based on the science that is available, that adverse reactions do happen, both with medications and vaccines. Craig has been remarkably consistent with his story of his son falling ill and suffering seizures the day he received vaccines at 18 months. He's shared about the ER and hospital stay and the brain damage, and done so on my blog,http://counteringageofautism.blogspot.com/2009/11/pushing-up-our-sleeves-and-telling-our.html, at my request, in an attempt to highlight the differences between parents assigning blame to vaccines based on what they've read and parents who have a child suffer a sudden, severe illness resulting in brain damage and months later a subsequent autism diagnosis.

While I would not agree, obviously, with all or even many of the conclusions Craig reaches regarding vaccines, autism, or some of his son's other problems, I would and do grant it more than likely that his son's illness and the damage done could reasonably be construed as an adverse reaction. I've also pointed out to him that an adverse reaction and autism could coexist, neither causal in the other.

I think it likely that there are parents of children with autism whose children had adverse reactions. Really did. And they draw the conclusion that the two are linked, the one causing the other. They are separate and distinct from the numerous whose children are diagnosed with autism and who cast back for a reason, run across the AoA/GenRes spew and buy into it immediately even though their children had no issues with vaccination at all.

Somehow there has to be a way to acknowledge on the one hand the reality that there are those who are injured by vaccines while adhering to the science that shows autism is not one of those injuries identified, all while not completely alienating those who need some answers, need to know that they are heard. I don't know the way through to it yet, to manage that tightrope, but I try.




What I posted at Orac's:


I've wrtten a long piece I won't bore your readers or you with concerning the last part of your post regarding Craig (that's what one's own blog is for, after all).


I stand and I counter the misinformation that AoA, Huff, other bastions of woo put out there. Not for nearly as long as you, nor I doubt as well, but I hope that I will be doing it for a long time to come.

I also work hard to find a way to bridge that divide between parents of autistic children; those on the one hand who follow the science and those who believe vaccines caused their child(ren)'s autism. And so I consider, for example, myself to be friends with both Ken Reibel and Craig, who will obviously never overcome the animosity they feel for each other. And I'm going to state that I can support what you write, Orac, and your goals to stand and take on the woo, the charlatans, to make a difference and call Craig a friend, somehow hopefully find a way to straddle the fence here and say to Craig, you're both grown men and this has nothing to do with me (which I'm sure you, Orac, already think).

It makes it difficult at times, like today. I encouraged Craig to start his blog, to share his story about his son, to write about his family, in hopes that it would be of benefit to him, and I read his blog and I offer him words of support, because that's what friends do. Did I wish him to use it to continue to let loose his anger? No, but he needs an outlet and a way to work out the stress and blogs are dynamite ways to do it.

You, Orac, make an easy target for Craig's anger and will undoubtedly provide fuel for another post.

So, because I do call Craig a friend and he needs that reaffirmation here, and because everyone needs a soft spot, someone to say they care, I post today here to reaffirm to Craig that I do stand. And I try to navigate this minefield because if I don't, I won't have been that person to Craig today, who really does need a friend today.

Orac is not the enemy, Craig, though it feels like it to you. Though you'll read his words as calling you a liar and hate him all the more for it, I hope that you will not, that you will choose not to.

And if I came across as a concern troll here, I have it on good authority from Jonathan Mitchell that tastelessness is par for course for me, so this should balance that quite nicely, don't you think?



:-)

6 comments:

kathleen said...

You are not a concern troll-hell no!I applaud you for making the statement that you did. It is something that is left out of the vax-anti-vax debate-all the time. I hope that Orac and his readers do stop by and read this post. It is important to look at everything.
You will be here in 5 years time-I look forward to being the first person to congatulate you. :)

Dawn said...

Kim: I couldn't wait to get home from work to see what you had written on countering (I can get Sciblogs at work but not into any Blogger site)

Well done. Like you, I think Craig's son probably had an adverse reaction to a vaccine. And yes, that reaction may have led to Craig's son's problems. Did the vaccine cause autism? That is unknown. Did the vaccine cause issues that exacerbated the autistic symptoms and lead to a regression? I don't know; maybe.

I also don't know if Orac has read Craig's full post here. IIRC (I could well be wrong, but I don't recall ever reading the full story until he posted it here), over on RI all Craig has ever posted is the vaccines caused autism, which, as you know, Orac is strongly against. Would he change his mind if he read the full story? I don't know. Again, maybe, because as a physician he knows that ANY medical treatment can have a adverse effect.

I hope you are still around in 5 years, too. I'll keep reading and commenting irregularly.

KWombles said...

:-) I'm going to do my best to keep blogging! I can't imagine I'll wake up one day and not have anything to say!

kathleen said...

"Can't imagine not having anything to say"...oh the horror if you could! :)

AutismNewsBeat said...

If I suspected my child was injured by vaccines, I'd seek compensation in the US Federal Court of Claims. That's why the program was started some 25 years ago. The program covers attorney fees, win or lose, and the rules of evidence are far more flexible than civil court.

storkdok said...

I think you were very thoughtful and provided good information to make some people stop and think about this. I hope Craig understands what a good friend you really are.