When autism parents collide

It happens to me in my community whenever I meet another autism parent. One of the first questions is invariably, "Are you doing GFCF?"--asked with an assumption that my answer will be positive. It's not. We haven't tried that diet because TH hasn't ever shown a need for it. The next question (and these may often come in reverse order) is, "You're working with Thoughtful House, right?" And, of course, I respond, "No." Funny thing is, when we were moving back here in 2006, I looked for autism resources in our community and came across Thoughtful House. One look at the folks in charge there, and I immediately canceled any plans to get in touch.

Another odd thing is, all I do is say, "No, we've not tried that. He's doing fine." Blandly. Without attitude (I think. You never know. But I'm Southern, and we have a lot of practice with this kind of thing). But what invariably follows is, at the very least, a "tut tut," as in, "Oh, well, clearly you're failing your child by not doing all of these things that everyone else is doing to ameliorate his autism-related problems." I'd feel some of that implied (or is it applied?) guilt were it not the case that my son is an almost preternaturally happy child who's thriving in the environment we've created for him. Which includes the purchase of about seven gallons of organic milk and three loaves of whole wheat bread every week. That child is full of casein and gluten. And just about the healthiest person I know.

It's hard for me to know how much to say in these situations, especially when the questions drift into "don't you think vaccines did this to your son" territory. It's going to sound condescending, but the fact is, I'm trained. I just am. Possibly hypertrained because I not only have the training, eddymacation, and bona fides as a (now former) scientist, I critique and edit about eight original medical or scientific research papers every week across every imaginable discipline. I can parse scientific findings in my sleep. And when it comes to autism, I read the original papers, always. I've read everything related to both Krigsman and Wakefield and the charges against them, all that the courts (vaccine in the US, GMC in the UK) had to say about the minutiae...all of it. And my training sets off alarm bells so loud in my mind that I almost move to cover my ears. These are not people with whom you want to hitch your wagon if you're a researcher.

And my problem isn't with the loving, passionate parents, it's with them, the demi-gods of the autism movement. The Sky Daddies (and Warrior Mommies like Jenny McCarthy) who promise miracles, who put themselves out there and facilitate a cottage industry of expensive and dangerous interventions and set off public health debacles and...you know, big stuff. Oh, and write books that are coming out soon and open up a "clinic" of their own where one will continue to practice "medicine" while the other will continue to do "research." The words I read in that linked article make me shudder. Public health...you're under threat yet again.

As I explained in a recent encounter, I don't take my training and knowledge and use it to judge any parent--any parent--for the choices they make for their children that aren't objectively tantamount to abuse. I'm a total libertarian when it comes to other parents and how they parent their children. My training and knowledge aren't enough for me to know their lives or their children--that's their expertise. If they get good results from their choices, that's great. I'd hope that they return the libertarian feeling, but I don't really find that to be the case. I feel the waves of judgment that emanate, sometimes manifested as open commentary, which makes me feel attacked. It's clear to me that to them, I'm a blind fool who haplessly fell into the clutches of the medical establishment and who cannot think for myself. Their pity is clear. I can live with differences--I'm a blue girl in a red state with many deeply conservative friends--but not when that criticism comes wafting down on me even as the sleeping giant of my own judgment lies undisturbed.

I've thought about the dichotomy between someone like me and someone like the other parents I meet in such situations. I've considered the words that we use. When we talk, my mind goes straight into data acquisition mode, and all I can do with each conversational exchange is to helplessly acquire more data that marshal an argument against what I know to be misinformation. I don't use the data in the conversation. There's no point. But I also don't talk emotion, and if I'm feeling any emotion, it's mostly just extreme discomfort at once again being embroiled in a tense discussion that will benefit no one and that forces me to keep sealed my bursting trove of counterpoints. What I have to say isn't for discussion at the individual level with caring parents who are doing their best for their children. It's broader than that, and these parent-to-parent conversations simply aren't the place for it. We've got friendlier stuff to talk about, right? Our children are autistic. We have that in common. How we got there doesn't matter in our moment together. The past is only prologue.

And I notice, even in my blanked state, that the other parent to whom I'm speaking usually uses a lot of emotional words and emotional gestures. Big faces, big hand movements. Strong words with great power, horror over vaccines, love, passion, urgency, fear, indignation, sometimes anger, and fervent proselytizing. I admit it: I have a problem with big emotion, and it just makes me all the more uncomfortable, adding to my feeling of being on the defensive.

In review, I see these encounters in real life (and in the blogosphere, too) as a clash of approach between people who rely heavily on attachment and emotion and people who...what? Don't feel? Don't attach? Ironically, even as I'm feeling fairly emotionless--an alleged autistic trait, yes?--they seem to be ignoring my social cues indicating that I don't want to talk more about this. Regardless, there's no way for someone like me, no matter what facts I marshal to defense of science and rationality, to counter attachment and belief and passion with that armory. It's like fighting fog with a sword. And I sort of like fog, anyway. It adds atmosphere.

But these differences don't mean that as parents to parents, we can't get along. We just need to agree not to talk politics, religion, or autism causation and cure, like civilized people should. My fight is at a different level. I keep my mouthing off in a different venue, beyond these individual encounters. The question is, Can we all do that?