Tuesday, July 27, 2010

On "Inclusive Resource Lists"

I wrote the following in response to a request for assistance in putting together a directory of resources for the parents of autistic children. I've edited the formatting and changed a few details to reflect the formatting options I have here on Blogger; other than a few formatting things (parentheses and quotes replaced with a block quote, etc.) and one spelling correction, the message remains substantially unchanged.

In other words, you want to create the resource-list version of Wheeler's (2003) thought experiment.
To quote:
Suppose a medical centre were to propose creating a programme in 'unproven and dubious medicine'. In this programme, physicians would learn how to give patients not only conventional treatments, but also treatments not known to be safe and effective. Some of these would have plausible mechanisms of action, but others would make no sense. The treatments would include experimental drugs of unknown purity. There would be research concerning the methods, but in the meantime the methods would be used before the results were known. Patients would have the benefits of both worlds – treatments that work and treatments that probably don't work.

A programme with such a title would find little acceptance. But change the name to 'integrative medicine', downplay the lack of evidence, claim that it deals with healing the person and employs new paradigms, and for some reason there is much greater acceptance. (p. 8)
You want to list people who make their living chemically castrating autistic children in the middle of people who've dedicated their lives to helping treat actual disease; you want to list people who make their living torturing kids next to people who've spent their lives trying to protect children. You want to list fear-mongering hate propaganda next to legitimate resources on parent education.

Err... no. I have no intention of helping with the development of such a "list". There are more than enough of them already.
This sort of thing is a tremendous problem in the autism world.

What would people make of a "resource list" that deliberately put legitimate stockbrokers and investment funds next to known con-artists? Yet, for some reason, people seem to think that lists that do this sort of thing are okay for parents of autistic children.

Some of this comes from the postmodernist belief in constructed reality. If you don't believe in an objective reality -- if people agreeing that something is true is enough to make it true -- then the question of what's actually going on is both meaningless and irrelevant within your paradigm. Despite what postmodernism would say, however, ignoring objective facts and attempting to construct your own reality independent from them is better known as "self-delusion" and acting on this sort of thing tends to produce tragic results. Quite frankly, this sort of attitude is patently absurd.

Despite this, however, many parents somehow view fraudulent resources as equal to real ones, "alternative" medicine as equal to real medicine, and hate propaganda which gives them false hope as superior to truths which offers them real hope (if at the expense of accepting things they don't want to hear).

I don't get it. I really, literally, don't... at least on an emotional level. Intellectually, maybe (at least somewhat), but that's the difference between "knowing" and "understanding".

Unfortunately, postmodernism only accounts for part of the problem. Bigotry, normocentric bias, and countless other factors also contribute. The results, however, speak for themselves. Parents of newly-diagnosed children usually lack the ability to distinguish between legitimate and illegitimate resources. They are at their most desperate, their most confused, and their most emotional. They seek a helping hand from anyone who offers it... and rarely notice the metaphorical dagger aimed at their backs. They are prime victims for frauds and con-men.

Many of them get wiser as time passes. Many of them learn the skills they should have been taught from the beginning... but it's easy for irreparable harm to have been done by then. If they're lucky, they'll only have been scammed out of money. If they're less so... the potential dangers are difficult to underestimate. In countless ways and for countless reasons, fake help is worse than no help.

I'd be more than happy to help someone assemble a genuine, reliable resource list. I will not, however, help with this sort of "project".


  1. Could you please increase the font size on the block quote? I had to go up about three sizes in Firefox just to be able to read it.

  2. (...Ah, that's why. The <blockquote> tag is already styled by the blog layout to decrease the font size, but the quote contains a tag which decreases the size even more.)

  3. I generally don't mess around with post HTML -- everything's autogenerated. I suppose I can make an exception this time...

  4. ... and the change doesn't seem to affect anything. Sorry -- I'll take a look and try again later.

  5. You sure get a lot of Chinese spam comments on your blog.

    Good luck with creating a genuine, reliable resource list. It's something that's really needed.

  6. One commercial SPAM comment removed. Very annoyed (and yes, it was the one Clay was referring to).

    As for the need for a good, genuine, reliable resource list... yeah. I've noticed.