Friday, November 30, 2007

What do you tell a newly hatched curebie?

That's not a rhetorical question, suggestions would be very much appreciated.

Here's the thing. I'm in this group for parents of kids with autism. It's a small group and everyone in it is really great in terms of attitudes. Recently there is a new person who has not actually shown up for a meeting but who has been posting links to things she's discovered on the email list. You can see her progression as she has posted links to various trashy books, then more and more biomed stuff and then a link to Generation Rescue. At that point I had to speak up and point out that there are risks, including death, associated with the treatments promoted with that website. At that point another new person chimed in an said that, as far as she knew, only one child had been killed by chelation and that thousands of kids did it safely every year.

I could, of course, go ballistic on these guys and, while I'm at it, bring up the whole issue of the gross disrespect that the curebies they are so impressed by show towards autistic people. The thing thing is though, that I don't want to scare them off. They are new to the whole business and they are optimistically exploring an avenue that gives them hope. If I point out, even if ever so politely, that they path they are wandering down is dangerous and evil, they will probably just leave the group. On the other hand, if I sit quiet, other new members in the group may end up following the "great finds" that this person keeps sharing. They may even get the impression that the group as a whole endorses that kind of thing (silence is consent, don't you know).

I have probably completely alienated this particular individual anyway, by pointing out the risk of death thing, but the situation is going to present itself again, and I want to have policy for dealing with it. I see it as a kind of a, "Do we negotiate with North Korea?" type dilemma but perhaps there are some simple (or complex) answers that I am overlooking.

Does anyone have any ideas?

Tuesday, November 27, 2007

Faster and Faster

That's how the language thing is going for MK. For a while after he had a very rapid advance in his rate of language acquisition, it seemed to slow down. In fact, it did slow down. But some other things started happening.

First, he began accepting questions about things that he said. It used to be that if MK said something and I asked him for extra details, or clarification or anything of that sort, the response would be a shouted, "I said, (insert whatever it what he just said, repeated verbatim)!" That's if I was lucky. A grunt of frustration and an end to the conversation was equally common, if not more so. But a month or so ago MK suddenly started answering these questions with the information requested. It's really quite disconcerting. I keep asking questions and waiting for the shout, and it doesn't come. I just find out what MK means and the conversation goes forward. Odd. There is almost no guess work required on my part. It almost take the sport out of it.

More recently, he has even started lacing his speech with extra information before it is asked for. He goes forward, pauses, fills in back-story or explains who the protagonists are, just at the point where the information becomes necessary. It's real-time theory of mind based discourse. It's kind of cool.

In the past few weeks the vocabulary has been shooting up again with daily double-digit gains. Also, there is this thing where, if you explain a new word once, he just remembers it. I've got to tell you, that is extremely convenient.

That's not to say that we are without linguistic hiccups. Yesterday, when I asked him if he know what the fives senses were, he answered, "Of course! A nickel." Irregular and intransitive verbs are still a bit irregular and intransigent. And just because MK is developing an ordinary style of discourse, that does not mean that topics of conversation have followed suit. We are still told repeatedly about the statistics for death an injury in amusement parks around the globe, for example. (Globally speaking, they are up in 2007 over 2006, in case you were wondering.) And sometimes, it just breaks down and the whole communication through speech thing doesn't work for a while. I know from my friends on the Autism Hub that this is no big deal. We just drop it and hang out. I'm always up for that.

Tuesday, November 20, 2007

Cures in Perspective

I was at a parent meeting today and one of the people there had recently moved to Canada from China. She was new to everything in the North American autism scene and, when the term "biomedical" came up someone had to explain what it meant.

She dismissed it, saying that in China there were an unlimited number of treatments and cures available but she had never availed herself of them because she didn't want to put her son though all of that when there was a good chance that they would not work.

The sorts of treatments she was referring to were, of course, traditional Chinese medicines but I realized that these were essentially the same as the detoxifying foot baths, complex diets and drugs that we call "biomedical autism treatments." Both are folk medicines, directed at people with little knowledge of science and supported by anecdotal reports from satisfied patients.

For some time now it has seemed to me that there was something futile in the battle to convince the biomed crowd with evidence and logic. Looking at the movement in this light -- as a folk medicine movement -- the futility of this attempt appears even more apparent.

Monday, November 5, 2007

This is Sparta

What MK likes to do is edit videos. He would happily spend 16 hours a day huddled before the computer watching and producing YouTube Poop. He chops up scenes from his favorite cartoons and from games, and rearranges them to make something new. Most of it is extremely repetitive (big surprise there) and sometimes hard for me to fully appreciate (apparently not so for his peers, as the videos he has made have had 75,000 views on YouTube in the past six months). He did one yesterday that I particularly like. I think it's the kind of 80s technopop sound that make it accessible to me. It is, it seems, a riff on another video montage to the same music, but I like MK's version better than the original.

By the way, you definitely want the sound on for this one, but the volume is set a little high, so if you are at work, you may want to have your hand on the volume control.

video