Wednesday, February 10, 2010

I'm going to step into the vaccine mess

Sometimes being in the autism community is like living in Port Charles or Salem--we've got as much drama as a soap opera.

Maybe you heard the news a couple of weeks ago, the news that stirred up all the drama and fighting all over again. Dr. Andrew Wakefield, the British researcher who published an article linking the MMR vaccine to autism, had his work retracted by The Lancet because of some unscrupulous research practices.

The publishing of the retraction might as well have been a bell ringing at a boxing match because as soon as many people within the autism community heard it, they were ready to rumble.

The community has been polarized, and viciously so. People on both sides are calling their opponents ignorant nutjobs. And it's everywhere I go in the autism community--on blogs, on listservs, on Facebook. People everywhere are writing angry, impassioned messages about how stupid the other side is.

I think, perhaps, the way this is playing out is demonstrating something about the roots of autism that Wakefield's research didn't address--that autism has genetic links. In these autism moms and dads, I see mindblindness, black and white thinking, and social impairment that are all indicative of the autism spectrum.

I can understand the people on both sides of the debate. Wakefield's research practices run contrary to all the ethical principles I adhere to as a researcher, and I am deeply concerned that medical journals do not require the authors of studies to disclose their financial stake in the research. (Ethics are incredibly problematic in medical journals: click here and here for stories from NPR.) And, honestly, before autism hit my boys, I thought that parents who assumed their children's autism was linked to vaccines were just grasping at straws to try to explain away (and blame away) their children's illness. Then my little Nick was born and had some auto-immune issues. He was on antibiotics pretty much constantly throughout his first year of life. Then he went to his one-year check up. He got all of his one-year shots, plus a flu shot . . . plus all of his nine-month shots all over again because the float pool nurse who got pulled in to cover that day didn't know how to read an immunization chart. About a week later, Nick had a dangerously high fever that even had the doctors scared, and then he lost so many of the skills he'd gained in his first year--waving hello and goodbye, kicking a ball, speaking a few words. About two years later, when I took him to a specialist who ran every test imaginable on him, I found he was *still* fighting an active measles infection.

Here's the thing that makes me sad: so many people will only read half of the above paragraph. They will see my critique of Wakefield's research practices and assume I'm one of the evil people after their savior, or they will see my narrative about Nick's post-immunization horrors and call me a loon for even thinking the shots and the regression could be related (even if medical tests showed an active measles infection).

As a scholar, I am passionately committed to what Krista Ratcliffe calls "rhetorical listening" or what Mark Osteen calls "empathetic scholarship." I believe that in order for us to make any progress, we need to listen to one another and understand one another's positions. In my scholarship and in my pedagogy, I make strong calls for such rhetorical listening; I demand that the neurotypical listen to and respect the neurodiverse. I find it sadly ironic that the neurodiverse and their advocates are failing to listen to one another.

And so here is what I propose: shut the hell up. Everybody. Stop calling each other names and listen, truly listen, to what others have to say. That is the only way that we can find a shared common ground that can be a true basis for change.



Monday, February 1, 2010

Saying "I love you"

Nick had slipped out of his bed, yet again, but he was being so cute that I didn't have the heart to say "night night, sweet Nick"--the words that always make him run to either his bed or mine and throw himself under the covers.

I was sitting at the dining table working . . . okay, I was harvesting some trees on Farmville, but I was going to start doing some work soon, really . . . and Nick climbed behind me in my chair as he loves to do. He leaned around and put his lips on my cheek, the trademark Nicholas pucker-free kiss, and then decided to climb up on my shoulders. I was struck by how funny a sight it must have been, Nick perched on my shoulders as I "worked" at the computer, and I momentarily thought about how I might capture the sight on my camera phone without letting Nick slip from my shoulders.

That's when he said, "Tee-cle!" My phonetic spelling *so* does not do justice to the the cuteness that is Nick saying "tickle."

"Hey, how am I supposed to tickle you when you're up there?" I jokingly asked. And then, with my right arm carefully wrapped around his leg in case he lost his balance, I reached my left arm behind me to tickle Nick's ribs.

He laughed and then said, "I wuf you."

(Okay, my eyes filled with tears again just typing that.)

Maybe he was saying 'I love you' because I say it to him all the time when I'm tickling and cuddling with him. Maybe he was repeating the words he'd heard so many times before without understanding what they stood for.

But one thing I do know: Nicholas knows what it means to love. My little boy loves me.

And tonight he said the words. They are the most beautiful three words I have ever, ever heard.