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>Not Even a Goal: When You Want Something That’s Impossible

December 31, 2009

>”THE YEAR WAS 2081, and everybody was finally equal. They weren’t only equal before God and the law. They were equal every which way. Nobody was smarter than anybody else. Nobody was better looking than anybody else. Nobody was stronger or quicker than anybody else. All this equality was due to the 211th, 212th, and 213th Amendments to the Constitution, and to the unceasing vigilance of agents of the United States Handicapper General.” from Vonnegut’s “Harrison Bergeron”

Collectively, the ladies of RFID talk alot about respecting people in their infinite diversity on our various blogs. We also write about folks going down the woo trail and we spend a fair amount of time debunking the snake oil salesemen who would take advantage of those desperate enough to go down that woo trail. To these things, Kathleen and I write about our children and Thelma and Louise write about their family and community, where we celebrate how that diversity is exemplified in our lives. We don’t put a rosy glow on it; we don’t pretend that things are easier than they are, nor do we suggest that having children on the spectrum is any easy road. We darn sure point out that it’s not easy being a parent, period, and that there are no guarantees, regardless your child’s perceived perfection.

We like to kvetch about things, but it’s usually about how others are kvetching unreasonably or doing things that are flat out foolish. Over at the latest RFID post, we’ve seen lots of interaction with two of the autism community’s more dispeptic individuals (three of them have shown up and commented, but of course someone couldn’t keep from hurling insults regarding people’s sexuality–to our way of thinking there are only three other folks out there who are on the top 6 list, and to my knowledge, two of them don’t read us).

One of these dispeptic individuals is well known for his flyby postings and inability to actually comment to anything actually written. The other does the same thing comment-wise; he just keeps coming back. Lurker wants a utopia where everyone is the same, no one with gifts, talents, abilities that everyone else doesn’t have. Vonnegut’s story concerning that world more than covers how I feel about that idea of making people literally equal: the same. Lurker is the only person I know of in the internet autism community who espouses such a truly bad idea. Whether he believes the rhetoric he puts forth or if he’s just in it to get a rise out of people, I can’t say. If you’ve missed his rhetoric, the latest RFID post has a more than  adequate demonstration of it.

I’ve, of course, covered this ground with him before, as with Roger, and here is that post, all the way back from July:

 Restatement of my Position regarding Autism

Lurker and I have been having a nice exchange in one of my blog posts comment section. I’m going to rework one of my responses so that brand new readers inclined to think incorrectly about my positions can have a simple position statement. I thought I’d been fairly clear, but hey, I can add to it for those who have questions.

So, to my previous post,, readers can add the following:

I believe in OT, PT, speech, sensory integration therapy, play therapy, ABA/cognitive behavioral therapy and other evidence based therapies, although my children have not used all of them. (Or at least, that if done correctly, they may be helpful while having no chance of harm to the child.)

I support parents who choose to use medications to treat symptoms (having been there and done that; it at least has decades of clinical evidence behind it as well as some double-blind studies– I would not choose it at this time with my children and their particular behaviors), vitamin suppliments (but not megadoses), and specialized diets for children with additional food allergies.

Since I do not believe that autism is heavy metal toxicity, I do not condone chelation. I do not condone lupron. I do not condone HBOT.

Reaching out to adults on the spectrum, to other parents, whatever their beliefs on the cause of autism is the right thing to do. Calling folks on their BS is also the right thing to do. Ideally it can be done tactfully and some consensus or at least an agreement to disagree can be reached. And we can all still gather and sing kumbaya.

Not wanting a cure, at least not in the way you (Lurker) appears to mean, since it appears obvious where your beliefs lie, doesn’t mean I don’t want my children and other children with autism to receive every effort to help them achieve independence and satisfying, fulfulling lives.

It means that I acknowledge that autism is a neurological condition, not vaccine injury, that is primarily genetic and set by birth (and in many cases caused by in utero trauma) and that the effects of autism in and on the brain are systemic.

So, no, I won’t trade a cure for who my children are. We are our neural network. I’ll bust my ass to give them the tools they need to do well in this world while working to make this world a safer, softer place for them.

I don’t particularly care if that means I get lumped into some fictional movement that exists only in the minds of some truly angry and emotionally disturbed individuals.

I’ve said what I stand for, and I’ve been consistent, minus the one typo in a comment where I said I wasn’t for therapy (obvious to anyone who read the comment that it was a typo).

That doesn’t mean I have the same ideological stance as everyone I talk to and choose to publicly admit to reading and following. After all, I apparently spend a great deal of time reading AoA.

And this particular blog would never have existed if they would have engaged in dialogue. They choose to moderate heavily, in essence, censoring.

Anyone is welcome here at this blog and posts without moderation.

So you tell me who’s more inclusive? Who’s willing to engage in discourse?

And to respond to Lurker’s comment about equality — “I mean equality in how much mental capability to learn and in amount of ability.” — I’m sorry, but that doesn’t exist in neurotypicals. We are all different, born with varying degrees of ability. That kind of equality isn’t possible, nor should you want everyone to be evenly matched as you seem to be defining equality. Read “Harrison Bergeron” and tell me you’d be for that.


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