May 13th, 2012

Commentary on DSM V, Aspergers, ASD from 2009

Read the whole thing. It's really good -- way better than anything I'm likely to come up with and does a nice job tying in with some of the then-current articles on the subject.

Anestis is careful, professional, polite and thorough in his analysis and argument without in any way conceding his point. I _love_ this.

The first two comments are from Baron Cohen and Anestis and are very collegial without agreeing (a skill I aspire to!). It seems clear from where I sit that Baron Cohen has a fundamentally conservative (not in the anti-gay, anti-abortion sense, but in the must-have-an-excellent-reason-to-change-things-not-just-a-few-good-ones) stance to many, many, many ideas, and Anestis ... does not.

The piece and the followup remarks also manage to stay on topic with respect to real world impacts: they talk about impact on _services_ not impact on _drugs_. There are people prescribing drugs for ASD. They probably should not be doing so, altho comorbidities have to be handled on a case by case basis.

It's Not Autism

If I had a nickel for every time I read this phrase in connection with PDD-NOS and/or Asperger's, I'd be over two dollars by now. Not enough to matter to me (or, really, anyone living in a developed nation), but still.

I mention this because I've been attempting to find an activist -- any activist -- who works in the area of autism who is explicitly supporting what the DSM V work group is doing. And no, I don't have a definition for "activist"; I'm operating in I-know-it-when-I-see-it mode.

Along the way, I ran across the study described here:

And forums in which people were discussing secondary coverage of this press release. Unfortunately, the secondary coverage turned "autism spectrum disorder" into "autism", and then literal-minded readers turned that into "not PDD-NOS" and/or "not Asperger's". Including, I might add, people who claim to be pros providing dxs. The punchline here is that when someone suggested that "autism" might mean "spectrum disorders", the pro assumed that meant Asperger's and _apparently forgot the existence of PDD-NOS_.

It's important to remember PDD-NOS, and here's why. (1) It has another name: "atypical autism". Thus, _it's autism_. and (2) People who didn't qualify for classic autism or Asperger's (often because the severity wasn't there for the former and the had a clinical language delay and thus didn't qualify for the latter) often get a PDD-NOS tag.

The existence and use of PDD-NOS is one of the reasons why I think worrying about loss of diagnosis is behavior that should be considered diagnostic evidence for _having_ ASD. People adapt to systems. Well, neurotypical people do, anyway. If a system doesn't give you a way to slot someone who clearly needs a slot, you just find another slot. If this feels wrong to you or you believe this won't happen, that's evidence that you think literally and concretely and are unresponsive to real world evidence that runs contrary to your way of organizing information. In particular, x-NOS tags have become so ripe with alternative uses that DSM V is trying desperately to provide _appropriate_ slots so we can do actual statistics on diagnoses that are consistent across time, context and clinician. Which, honestly, a spectrum-y person ought to just adore.

ETA: Also, I've been thinking about the Pharma conspiracy aspects of resistance to combining classic autism/PDD-NOS/Asperger's, turning BPD into a spectrum disorder, etc. That is, people fear that these changes are being quietly engineered by drug companies so they'll make more money. The people involved in this process, and the therapies likely to be prescribed as a result of the new system tilt pretty hard in the direction of CBT. You want a conspiracy theory? I'd look there. Also, for job opportunities.