I’ve recently been told my social skills are mediocre (Thanks, Dr. Jay!), that I am a rambling, deranged word twister (Thanks, Doug!). I’ve been called lots of things over the last three months (baby killer – thanks Hydra). I’ve been lectured on the need to remain above the fray and not enter into the debate at the Jenny McCarthy level of name calling and screaming if I want to win folks over.
So I’ve had the time and opportunity to reflect on how to engage in this discourse. Should one always remain civil? What does it mean to be civil? Some would intimate that this means you shouldn’t engage these folks at all, shouldn’t challenge them as the challenge itself is uncivil. I don’t buy that. I think Craig has a fairly good handle on it: reply in kind.
Of course, that means they have to be talking to you first, I suppose, and Kim S. is not talking to me. I’m sure it’s in part because she is busy raising her three daughters, and I don’t ever forget that the person on the other side of my posts is just that: a person, with feelings, beliefs, with a life, with family and friends. And apparently, the more bitter the posts, the more hostile the posts, the more I assume in pain they are over their situation. I figure it’s also that she ignores those who disagree with her unless she sees a good opportunity to attack, which is one way to deal with things. And, I figure the rest of her time is spent writing testimonials touting the efficacy of untested, unregulated nutraceutical items and being snarky. She does snarky well. Okay, to be fair, I do it well, too.
Reading my posts here at CAoA, you could come away wondering what got up my butt that I won’t leave this alone, that I spend a portion of nearly everyday writing something to counter Kim S. and her buds. And I’ve tried to be clear why I do it and what it will take to make me stop. I don’t assume that I have the reach that AoA has, nor that I can compete with them for readership. I can assure you I will never take on a sponsor or advertising on this site. I won’t profit financially on this. Those are personal issues concerning integrity. I will fight, though, to be more than an annoying gnat. To reach out to those who are new to the autism diagnosis or who have been in the midst of it for awhile and offer a different perspective. My hope is that Detritus will reach as many folks as Countering does, that positive, humorous pieces as well as honest, heart wrenching posts on parenting children with ASDs will resonate more than calling out people for their lies, their misinformation, or for their outright crazy. I’ve split the blogs because it seems to me, with my extreme systemizing brain, that they should be split. That the intensely personal pieces ought to be separate from this, although the personal does bleed over onto this site, as it is doing today.
I don’t have any personal malice towards Kim S. I’ve reached out to her on several occasions and asked specifically how we could heal the divide and create a community that is supportive of all parents of children with autism, but received no response. I could take that several ways, that she isn’t interested in that (and I do tend to take it that way), that I am too unimportant to merit an additional response, that she’s irritated about this site and refuses to acknowledge me. I’ll let the reader be the judge of why Kim won’t discuss healing the divide.
My email of May 28th to Kim S., which has gone unanswered:
God, it's messy, Kim. So, when you read the email I wrote that followed this one, please take it in stride, in that what I want are answers for our children and treatments that are effective and finding common grounds that parents of children with autism can stand on. But you know that's not what everybody wants. There are many out there who are absolutely certain that their child's autism was caused by the vaccines and that big pharma is out to get them and yet aren't willing to consider that the people offering treatments and cures are out to get their money, too.
How can we dial it back some? At least at Huff, the disagreements don't get nasty because it's moderated. It gets heated, but it's dialed down in tone. The post by Teresa on my theory of mind essay is just crap. So is the one that followed it. My understanding of autism is from a psychological and neurological perspective and follows that science, a science which rejects autism/vaccine link based on the science, while acknowledging the likelihood of environmental triggers. Not letting my rebuttals on isn't right.
How can we focus on common areas of agreement? How we can work together soften the divide between those who accept the genetic/environmental interplay while discounting vaccines as a precipitator and those who are following the Geiers and Wakefield down what I consider the rabbithole?
You have my assurance that no emails from you will be placed online or disseminated to others, in spite of my assertion in my last email to you from last night. I'm willing to step back and try to work with you personally on how to focus on areas of commonality. I don't want my kids seen as vaccine damaged freaks. They aren't. I want the totality of them seen and appreciated, their struggles appreciated, their gifts recognized.
People like Jenny McCarthy, people working hard to promote our children as shadows and as soulless, are doing our children harm. Following "science" that has been thoroughly debunked by reputable researchers does our children harm.
Age of Autism does not promote or foster a fair and balanced approach to this issue. It doesn't. And when it doesn't allow posts on in rebuttal of the attacks on a person, it really looks one-sided and agenda-driven. My rebuttals still aren't on.
I'm going to stand against that. I'd rather stand in solidarity focusing on effective treatments for our children, and I assure you, if a double-blind randomized study ever shows that chelation has greater than placebo effects on reducing autistic behaviors, I'll be among the first to write on it admitting that it works. Same thing for HBOT and megadoses of vitamins (I'm not against supplementation; I'm talking about the serious over megadoses).
My word to you, I will stand next to you in solidarity to my dying breath in advocating for better treatments for and better treatment of our children. But I will stand against those I believe are putting forth dangerous untested and unproven treatments for our children. And I will stand against those who promote this, as well.
Can we work together to find our areas of common ground? Don't we have enough battles to fight for our children?
Thank you again for your time and your understanding if last night's email got your back up. Even though I have outlets to make sure my rebuttals are there, it isn't right those rebuttals are not on AoA. That frustration with the one-sidedness entered into that email and I hope you will see that as written to you in your capacity as managing editor and not personally, and this letter as written personally. Does that make sense?
We're all just wading through this fast-moving river of life as best we can; it probably helps when we can stop and remember that, huh?
I’ll let my readers judge AoA and its leadership and its most extreme commenters and the quality of their character.