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".

On My Recent Conference Presentation

My Autreat presentation went pretty well, I think. I uploaded the slides to the conference's Yahoo group, if anyone's interested.

Or, alternately, feel free to ask and I'll send them to you.

On the flip side, things have been extraordinarily hectic here. Between an "interesting" (one of my professors has decided that deducting points from my grade for autistic literalism is acceptable behavior), being swamped with schoolwork, and being otherwise preoccupied, I haven't really been able to spare much energy for blogging.

That said, however, I really should have written more. Sorry.

In any case, I just realized that I'd only posted one of the two essays I sent in as supplementary material for my presentation. As such, I'm posting the other:

How does it harm autistics?

Pseudoscientific medicine intended to "cure autism" harms autistics in a wide variety of ways. First and most obviously, the treatments themselves are often harmful. The financial harm to families is often substantial, with many families spending simply absurd amounts of money – some even mortgaging their homes – to pay for "treatments" that can be considered fraudulent at best. Many pseudoscientific treatments require considerable effort to implement while delivering illusory or placebo-equivalent benefit (or even producing harm). Families become emotionally invested in the method, and are often incredibly disappointed when it doesn't work. Sometimes the family avoids this disappointment by seeking out ever deeper and darker depths of woo.

The acceptance of pseudoscientific medicine promotes substandard care due to undertrained practitioners who bypass the relevant licensure requirements. It imposes double-standards on pseudoscientific and scientific practitioners, standards which inevitably favor the pseudoscientists and undermine the constant efforts of scientific practitioners to improve standards of care. It provides false knowledge of how to deal with real problems, and encourages people to ignore, disregard, or remain ignorant of a wide variety of standards of medical and research ethics, and encourages default logic in treatment.

It provides countless confounds to research aimed at helping professionals understand and help autistics and interferes with the conducting of such research, making it harder for genuine scientists to recruit participants.

It encourages the reification of autism, demonizes our neurology, and acts to dehumanize autistics. It promotes a culture of desperation and prevents acceptance of our differences. It legitimatizes the exploitation of us and our neurology by various political groups. It even distracts from real issues and endlessly complicates the discussion on autism.

Perhaps it is more meaningful to ask, "How doesn't pseudoscientific medicine harm autistics?" It would certainly be a far shorter list.

It's worth noting that the list in the presentation itself was longer -- I added several items after I wrote the above. Sometimes "Gyah" doesn't quite cut it.