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With friends like this…

June 30, 2010

I didn’t have Net access most of the long weekend Nigel was in Sweden. Thankfully, the HDD I thought was killed by a less-than-minute’s power outage is OK. I hadn’t had cause to see that box reboot before, and apparently it always claims it can’t find the main HDD, then sits on a GRUB-loading screen for about five minutes; after a few minutes, I was convinced it wasn’t doing anything. (That was also very confusing, since it must have found GRUB somewhere…) But, I’m glad that’s back up now. I was tempted to do some writing anyway, but the bedroom has been staying enough of a sweatbox that I haven’t been sleeping well.

This afternoon, I couldn’t resist, groggy as I am. I have learned to stay away from New Scientist‘s editorials, given the number of howlers I’ve seen. But, the dark side of hyperlexia has struck again: if it is book- or magazine-shaped and it comes into this house, I have to read it.* And Nigel picked up a New Scientist to read on the train yesterday evening.

So, first thing after I got up, I found one that cost me a decent number of Sanity Watchers points: Desperate for a cure (print edition title; online, it’s “Stop uncontrolled experiments on autistic children”).

The author made some points that salvaged the thing to some extent. There is still plenty of human rights fail there. In part:

HERE is the uncomfortable truth about autism: we know little about the many causes of this spectrum of disorders, nor how to treat them in an effective way. Feeling abandoned by mainstream medicine, some parents are driven to try unorthodox “cures” (see “The lure of a cure for autism”**). This is dangerous territory.

Most likely, these treatments do nothing. Some may help, though without proper trials we can’t be sure. Some can also have dangerous side effects.

While behavioural therapies don’t eliminate autism, they have at least been properly tested and are known to lessen symptoms. What is clear is that some parents will stop at nothing in the quest to find a cure for their children, even if there is no science behind their attempts.

What’s to be done? Parents who are using unorthodox treatments are conducting an enormous uncontrolled experiment on their children. It’s not to be encouraged, but might it be possible to conduct a damage limitation exercise? Perhaps salvage something for science?

If parents were to record the doses and impacts of the treatments they are trying in a central database, the data would admittedly not be solid enough to prove that a treatment works. But it would at the very least draw attention to the dangerous ones, maybe even tease out any promising ones.

With “friends” like this…

One of the reasons I got so frustrated at this one is how nicely it reflects clusters of common (and nasty) societal attitudes.

Substitute basically any other group of people for “weird-acting children” (note the nod of approval to behavioral “interventions”; more on this, at some point), and see how reasonable this sounds. (Except among some religious groups, dealing with behavior they don’t like.)

Nonconsensual medical experimentation? (“Not only was informed consent not obtained, but the physician often fraudulently described the experimental procedure as either a diagnostic procedure or a treatment for the patient’s condition, when the physician had no reason to believe that the patient might benefit from the experiment.”) Somehow inevitable, in this case. And, indeed, there is no real way of stopping these atrocities, given children’s enduring chattel status and the even lower recognition that disabled kids might have some human rights. Including a right to exist just as they are. Note that there is no suggestion that this qualifies as child abuse, much less that the kids should be protected from the folks doing dangerous shit to them, nor that any of this should be illegal.

I was also put off by the reek of the ugly side of scientism. Somehow, even if parents continue to do unethical, dangerous, and just plain ridiculous things to “their” kids out of whipped-up fear, some benefit to scientific knowledge qualifies as “damage limitation”. While the kids are still getting hurt, both by crap like chelation and by getting the overt message that they are not worthwhile human beings. It’s easy to come away with the idea that the main injury here is being done to Science in the abstract, rather than to living human beings.

If these parents are ignoring the complete lack of any kind of evidence that these “treatments”/”cures” work, how likely is it that many of them would pay any attention whatsoever to a central database which might “dash their hopes”**? As for those who would make use of this database, how many are likely to use it as a source of other wacky ideas for things to do to their kids? This database is not even presented as maybe, just maybe helping the children in question, other than by contributing to scientific knowledge. Through nonconsensual medical experimentation, with no oversight, conducted by parents who have fallen victim to fearmongering and aren’t thinking straight–and certain medical professionals (and other people) who are taking advantage of this and profiting off these kids’ suffering.

If they weren’t suffering before they started getting treated this way, they will be pretty damned quickly. The parents’ supposed horrible suffering? A totally different thing. They are the ones with the power here, and burdens are where you look for them. Spreading this suffering around? Not cool.

These are just some of the problems I spotted. And I am reminded yet again of Bev’s excellent Therein lies the problem graphic:

“When I Say Autism, You Say…” pie chart. The smallest slice by far is labelled “Something about human rights”, after these choices: “Something about Autism Speaks”, “Something about vaccines”, “Something about treatments”, “Something about finding a ‘cure'”, “Something with the words ‘tragic’ or ‘devastating'”, “Something about a movie you’ve seen”, “Something about children”.

I was intending to write more about how children are too often not considered to have basic human rights–even before you throw in things like disability status or gender/sexuality-related “weirdness”–but I just don’t have the spoons right now. (Especially after reading a bunch of hateful crap, even more of it while trying to hunt down suitable links.) I get really, really tired and overwhelmed sometimes, when it comes to human rights/social justice stuff. That, and questioning the goodness of behavioral “interventions”, would work better as posts of their own, at any rate.

Yes, when dealing with some topics, it’s hard to avoid lots of scare quotes.


* This can be very frustrating indeed when they are printed in languages I can’t read. Even more frustrating? I haven’t had the language-learning spoons available to get sufficiently up to speed so I can read the decent bit of Swedish-language stuff in the house. It honestly makes me nervous, sitting there unread by Urocyons. Then there are the things like CAMRA and BCS periodicals, not to mention catalogues…

** If you want to be frustrated by tragedy model stuff, read this one. I kept getting hung up on such neutral statements as “but others tell heart-rending tales of dashed hopes”. At least this article debunks the epidemic myth, and points to it as harmful. I did not see any mention of neuroleptic treatment for “symptoms” as misguided and potentially harmful, unfortunately. There is still the strong assumption that something needs to be treated and/or cured.

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