It's been an interesting week here at Countering; one of my posts (Sucked into the woo-vortex) has seen tremendous discussion and progress towards understanding where parents who appear to be locked in an unending war over vaccines and autism are actually coming from. If you read Huffington Post's articles on autism and vaccines, then you know what I'm talking about. There is an us-them mentality that prevails. AoA, which crossposts a lot of stuff at Huff, does what it can to stoke those fires so that parents who believe their child's autism was vaccine related don't have the opportunity or even the desire to relate to parents whose children's autism was not regressive, was not related causally or correlatively to vaccines. And Huff's format ensures hostilities take the court every time.
I don't know how long the war's been afoot on the internet; I just came to the table in March of this year. I'd never heard of AoA until March, although I had visited several blogs and forums related to autism before (mostly those run by autistics for autistics, since it was the autistic culture I was interested in). I know, you'd think since I've been dealing with autism for nearly two decades (autism awareness came to our house when Bobby was four, but his dififculties began at birth) that I would have really known all about this internet world of blogs, forums, and sites relating to autism and vaccines. I didn't. I knew about Wakefield when that came up in 98. I knew about secretin and every other woo idea that came along. I noticed, and I went on about my business of raising my son, teaching him, working with him, reading journals and scientifically based books about autism, and all the stuff on the internet passed me right on by.
As the vaccine controversy got louder, I began to pay a little more attention, but it was to get the articles on vaccines and study that, not to read what parents were throwing around. Anecdotes rarely move me. May make me cry, but do not move me. I'm interested in what we can know through science. We are such fallible creatures and believe all manner of woo, some of it harmless and frankly beneficial to our well-being and a great deal of it that is harmful. I may find a person's story compelling, but I won't make health-related decisions based on one person's story. No one should. Testimonials work, though, even when we know they should not. Psychology is every bit as fascinating as people watching, if you were wondering. It is people watching, but on a scientific footing.
In March, I had three weeks where I was stuck in my recliner and with a laptop in my lap. And I explored to my heart's content. Children in school, the bright boy settled into his life at the center, students being managed via email, and for the first time in my adult life, I had hours upon hours of time to fill. Oh my.
What a world I have found in these last six months! It has been life-changing, endlessly fascinating, and it beats video games or tv to pieces for entertainment and for creating a deep and abiding satisfaction. I love people and their stories; people watching is my favorite thing to do. The internet gives you the freedom to people watch more people than you could ever do in real life. And not only watch, but the opportunity to interact and form relationships that change your life and a depth to them you didn't even know you were missing. Tapestries being woven, that is what I see as I write my blogs, read the comments, read others' blogs, leave comments there, and watch relationships being built and grown over the passing months. Lovely stuff, even when it's dealing with the division within the autism community; funny, I know, but true for me.
So, I've spent the last four months (has it really only been that long since I started Countering on a whim when AoA wouldn't post my comments?) using this blog to deal with, well, countering AoA and other sites promoting woo. And I've developed the idea of kick ass kumbaya, a way of approaching this division in the autism community. It isn't enough to just woo fight, or for that matter, dumbass hunt. Fun, yes, in and of themselves, but not great for community building unless you are building it on exclusionary criteria. AoA, Gen Res and the like already have the corner on exclusionary community building. I'm interested in trying something different.
The autism community is that. A community. So, let's act like we're all members of the same in-group and see where we can get. I know, that's probably my love of the ideases of Joseph Campbell and M. Scott Peck coming through, but, still, a community that accepts everyone to the table and holds them to be part of the ingroup. Sort of like family, you know. Gotta let them to the table and then deal with them. Find a way to live together. That begins with understanding where they are coming from. A little theory of mind in action (and no, I don't think autistic people lack an awareness that other people have minds of their own-- I think we all make that cognitive error at times, and assume that others know what we know, among other things).
Kick ass kumbaya works towards community building, says we take on the woo and those who would prey on others' vulnerabilities and stand for those who can't stand for themselves (and for those who want the company), but that we do it with real compassion for the people involved (okay I say that, but that's what kick ass kumbaya means to me).
That means consensus building where possible. And it means recognizing an innate need to create in-groups and out-groups. Once you know why you do some of the things you're doing, you have the ability to stop doing that when it is no longer advantageous.
We have a generation of autistic individuals coming of age. My son turns 20 this year. My daughters, who will be 6 and 8, are in the next cohort that will become adults at the end of the next decade. We have ten years or so to work to make the world a better place and a more accepting place for this current cohort of autistic children. Their autism isn't going to magically disappear; no amount of supplements and MB-12 pops is going to make their brain be wired differently. They see the world differently; they have more challenges to face and overcome. We need to focus on effective therapies to ease their challenges and help them be successful and we need to redefine what success is. Success should not have to be a square peg fitting into a round hole.
My goal is to make the world a softer place for my children and the hundreds of thousands of children in this country who are like them (and I'm not just talking about autism). Part of that fight to make the world more accepting of them and easier to navigate for them is fighting woo.
This woo says that my children need to be recovered and if I only through enough money at it, go down every possible avenue of quackery, I will have recovered my children. This woo denigrates who my children are; it dehumanizes autistic adults. It says they are damaged, defective and need to be fixed and made whole. It terrorizes parents and makes them hate the medical establishment all while promising expensive cures that medical insurance will not pay for. It's medicine, but it's maverick medicine. And we all know that the lone holdout has the courage of his convictions, and if he has the courage of his convictions he must be right. Need I remind anyone that courage of one's convictions manages to get a fair amount of people killed? It isn't courageous to be a lone voice when that lone voice profits off of parents' desperation. It's incentive to profit. It's hero-casting at its best. It is ego and pride. And desperate parents not listening to their woo radar.
We want our children to be healthy, happy, successful, to have every advantage, and to do better than we have. Autism, especially the way so many out there are trying to cast it, robs parents of their desires for their children. Except that it doesn't. That's bullshit and a decision that everyone makes for themselves. You can be autistic, you can be disabled, and be happy and be healthy. Successful? Yes, if you decide to define success on whether a person is a good person who tries to be of service to others to the degree of one's capacity to do so. On those measures, even on a bad day for my son, he has achieved what I wanted for him: he is happy, he is healthy and he is successful (he is who he can be and there is value and worth in his existence). Does he have every advantage? No. Will he do better than I have? Hmm. Depends on how we define it, doesn't it?
Too much of what's going on in the autism community isn't about the autistic individuals. It's about the disappointment that parents have faced upon realizing that their hopes and dreams have been dashed, that life isn't going to go quite the way they thought it would. It's about quick fixes and easy blames. It's about ego and id.
Many of the challenges our children face are daunting. I don't make light of those challenges, nor how these challenges serve to challenge us as parents. I don't belittle the struggles that we all face to find a way to cope with caregiving beyond what we were planning for. Nor our fear for the future.
But you know what, what AoA's doing isn't doing anything to make that future any brighter. It's not. It's not building a strong, positive supportive community. It's not dispassionately examining the science, nor the gaps in the science. It keeps trotting out junk science disguised as the lone heroes finding proof of a vast conspiracy to keep us all dumb and down. It's dopamine and hero journeys.
Let's decide on a different quest. Let's decide to find the humanity and the commonalities between those who would appear to be on different sides. Let's show that actual deep, meaningful conversation in which the other's humanity is never forgotten is actually more satisfying and rewarding than knocking fake dragons off of fake castles. Seriously, let's find the dopamine in kick ass kumbaya.