This is sorta freaky, and I am not at all sure what I think of it

2012-09-04 17:53

The FDA has approved clinical trials of a proposed cure for autism.

This is… well. It’s one thing to know that the only major “charity” (I use the term loosely) that most people have heard of that has anything to do with you is dedicated to eradicating you and everyone like you. It’s another thing entirely to hear that some doctors think they might be making progress towards doing that.

I am aware that some autistics are a lot less functional than I am, but then, so are a lot of non-autistics. The vast majority of the ways in which I function “poorly” can be categorized in one of two ways:

1. ADHD, not autism. Separate issue.
2. Things that are a problem only because they’re abnormal.

Imagine, if you will, the general category of “ways in which someone’s identity could be radically altered by biological interventions”. Imagine a treatment that makes people self-identify as male, or female, rather than as whatever they might otherwise. Most people would be pretty upset about this; I certainly wouldn’t be super enthused about “ceasing to be autistic”, simply because that’s a fancy way of saying “ceasing to exist, and being replaced by someone else”.

Thing is. This is clearly being done to kids who cannot possibly give informed consent. Should consent be required? Usually we assume that parents can consent on their kids’ behalf, but does that apply in cases where the treatment involved utterly changes who the kid is?

I have no idea.

I do, however, think it is pretty clear that there is a lot of benefit that could be had much more cheaply, and with much less risk of unmaking people, or damaging them severely, simply through education and support services. And maybe doing that would be a good first step towards thinking about whether we need to “cure” autism any more than we need to “cure” blackness, femaleness, or any of the other things that have historically left people poorly-equipped to function in a society dominated by white males…

Peter Seebach

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Comment

  1. ALthough, when you look at the article, it’s pretty weak.

    He has a sample size of one (count them, one) for cord blood helping, and that was for Cerebral Palsy caused by birth trauma.

    And he’s decided that obviously this will work for Autism with no discernable cause (which is to say, most of it), and his reasoning seems to be “because stem cells neurons something something can’t hurt, right?”.

    And even then, while regressive autism might set in over the course of a month, advances may or may not be noticeable in fits and starts over years. So, without understanding what’s actually happening, he’s set up an experimental protocol which you can guarantee will be heads he wins, tails you lose: the treatment will be praised for any improvements, any failure to improve must be because this is the wrong sort of autism.

    That’s even before all your other valid points about the social model of disability and identity.

    Catsidhe · 2012-09-04 18:33 · #

  2. As someone coming from a somewhat similar place (getting a little help from ADHD meds and a general recognition that I could be labelled as autistic but there’s not really any point to it) I definitely understand your concern. Having 2 kids also on the autistic spectrum adds something to that perspective. My 21yo daughter followed my path: very high functioning, quirky, ADHD diagnosis but ill-served by meds, needs no CURE because her divergence from “normal” is a very mixed bag. I’d even say it is a net positive, but I’m very biased.

    Then there’s my son. Whatever genetic aspect of autism he shares with myself and his sister was compounded by being born at 23 weeks and having a significant cerebral hemorrhage in his first week. It is impossible to untangle his complex neurological issues into discrete components, but the classical defining behavioral features of autism are all there and they have been roadblocks to helping him overcome his many other challenges. Curing his autism would change “who he is” but it would also give him a better shot at having a decent life.

    That’s a deep problem with the label of autism. It is biologically accurate to classify the whole spectrum of autistic features together, but that doesn’t make the people exhibiting those features all the same. Some of our brains manage to work out adaptations to a world full of people with very different perception and thinking, some can’t. Would I cure Kyle’s autism if I could? Absolutely. I’d cure his CP and epilepsy and damaged eyes and generally underdeveloped left side too. Would I give him a choice? No, because he’d definitely say no. He’d much rather spend the day slamming doors, entertaining himself by seeing how hard he can make the parents flinch at his shrieks (we’re funny…), and asking us to hunt down books (which he cites by ISBN) so that he can read the first word of every line. In a decade as a putative adult 22, he’d likely make the same choice. Would I cure Megan? Not my choice, she’s 21. I’d advise against it. Would I cure myself? Well, after a week full of people insisting on teleconferences instead of email exchanges, I might take that cure. Unfortunately, no one saved cord blood in 1965 so I couldn’t participate in this trial.

    That points out important features of the specific treatment in the trial: no one involved is using the word cure, it’s really only applicable to young children, and its about as close to a natural treatment as you’ll find in a modern medical trial: autologous cord blood stem cell infusion. If it actually works, it is pretty hard to argue that the process is radically changing who those children are/would/could be, since they are getting cells they missed out on having at birth by the accident of a few minutes. Whatever such a treatment actually could do would be properly called “healing” or maybe “regeneration” and it would make a strong case for whatever it changes being damage.

    Bill Cole · 2012-09-04 22:50 · #

 
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