Friday, February 9, 2007

166? 150? Who cares?

No sooner did I walk in the door last night than my wife tells me the news regarding the CDC releasing a new study saying that the incidence of autism in the US is now 1:150. There's an article in yesterday's Newsweek discussing this.

One of the main bones of contention between the curebies and the neurodiversity crowd is what exactly the incidence of autism is (or more accurately, if the number is increasing).

I think that both miss the point, to a certain extent.

The curebie crowd tries to use the numbers to show that there is an "epidemic" (can we ban that word from the English language for 20 years or so? Or at least restrict its use to epidemiologists?). Then extrapolate that if the number is increasing that there must be an environmental agent that must be exposed (usually mercury, but now expanding to other agents).

The neurodiversity movement counters that the number is not increasing, and increasing numbers are solely due to better diagnosis. To allow that there could be an increase in the numbers of autistics seems to admit defeat.

Who cares? Whether or not the number of autistics is increasing or not does not speak to what causes autism. All of the numbers to date are approximations. They may be becoming better approximations, but they're only approximations.

In a time when we should be uniting to advocate for autistics, instead we are wasting time in chasing numbers and divisive arguments that only serve to stall effective advocacy. I just wish we could agree on certain things, and agree to (politely) disagree on others. Unfortunately, the Web does not often lend itself to proper decorum.

I wish we could agree that:

Statistically, the 1:166 and 1:150 are not different, especially since different populations were surveyed to come up with these numbers.

Increases in the incidence of autism are certainly at least partially, and probably largely, due to better diagnosis.

Lots of things are increasing in incidence-Asthma, Hodgkin's Disease, Crohn's Disease, Total Psychiatric Disorders, Total Population, Population Density, etc. Just because any of these (or autism) increases, doesn't mean that there is an epidemic, or that a certain thing caused it (the eventual incidence of death for people born over the last 100 years remains unchanged at 100%, however).

We don't know what "causes" autism (other than genetic predisposition).

The most important thing for people with autism is dealing with it in the here and now, today. Research into "cures" may benefit future generations (after suitable ethical discussions are undertaken). But what should be uppermost right now are things that will help autistics to realize their full potential.

Things like education ("How do autistics learn best?", and "What compensations and "work arounds" are most compatible with their inherent way of thinking?"). Things like fully valuing social skills instruction/coaching in the education system as important to a complete education. Fully valuing autistics, such that they are not just given an "adequate" education, but are given an education that is individualized to their needs, and designed to maximize their potential (much like the general curriculum is designed to maximize the potential of NT kids).

Things like adult support services. The public sector's feet need to be held to the fire. We can't just shuffle kids along thru the school years, just to turn them out without any support as soon as they "age out" of the system. Proper supports can increase the level of independence of individuals, and are also liable to lead to better and higher paying jobs for these individuals (then they'll pay more taxes). What do autistics themselves think are the most valuable supports?

So let's just drop the numbers game for now, shall we? Instead, let's concentrate on what we CAN do now. And try to have a little bit of common sense and common courtesy in dealing with each other.

For my part, I'm keeping my moniker of Club 166, no matter what the "incidence" changes to. 166 is a much cooler number than 150, which sounds so plain.

Joe is 208 :)

1 comment:

kristina said...

So glad you sound the education note here----that's the subject that constantly gets overlook amid too much talk of numbers, epidemics, cures, chelation, etc. etc..

And 166 is definitely cooler, though I am taking a liking to 1 in 100.