October 28th, 2010

Of quizzes and conformity

Recently, Baron-Cohen and company Got All Digital and put their Autism Quotient questionnaire on Facebook. It has been over at Wired for a while. A variety of my friends took it, so I took it again, trying to be as neurotypical in my answers as was compatible with still being mostly honest. This would be distinct from, giving neurotypical answers that I knew perfectly well weren't accurate, or giving accurate answers that I knew would expose my geekiness in all its glory. There is a spectrum of right answers on these things.

In any event, my score unsurprisingly puts me in the high functioning autism/Asperger's range. However, what may or may not be obvious (this is, after all, a _Facebook_ quiz!), the adult assessment tool for this diagnosis (a term I find much more neutral than "disorder" or "disability") has more to it than the AQ, which is just one of the _screening_ tools. A screen is something you deliver to lots of people, to help you focus on the group of people that you then expend more resources on in order to figure out if they meet the criteria you are using. Think: the quad screen, or a mammogram, or a PSA test. These are tools that are cheap enough to deliver to a large population, but their sensitivity is somewhat lacking.

The other screening tool is the Empathy Quotient, which can be found here:

http://www.guardian.co.uk/life/table/0,,937442,00.html

or here:

http://glennrowe.net/BaronCohen/EmpathyQuotient/EmpathyQuotient.aspx

Again, a _screening_ tool.

According to Tony Attwood in _The Complete Guide to Asperger's Syndrome_ (review, hopefully, will someday appear, but this could take a while -- short form: it is worth reading), the criteria for an adult to have Asperger's includes the criteria in the DSM-IV and some additional criteria. While a person would fill out the AQ and the EQ, the clinician "validates the answers during the diagnostic assessment and makes his or her own opinion on the diagnosis based on the new diagnostic criteria". After explaining the diagnostic criteria, Attwood spends a couple pages on confidence in the diagnosis (does the clinician think the client is being honest, and noting that there "is a difference between knowledge at an intellectual level and actual practice in real life".

Diagnoses in the mental health ordering of the universe almost always include clauses about whether the rest of the criteria are a bad fit for your life. I think this is intellectually appalling: are we _seriously_ expected to believe that we have a disorder just because we're married to the wrong kind of person and/or in the wrong career, but if we had the right kind of job and the right kind of partner, we wouldn't have the disorder even tho _nothing_ else about us had changed? Come on. Attwood is sensible enough to recognize that this isn't about whether it is an aesthetically beautiful abstract structure: it's about what you're going to use this diagnosis for. The "clinician may have to consider whether the person who appears to be coping reasonably well, perhaps with a high-status profession and having a partner, would benefit from receiving a diagnosis of Asperger's syndrome. At the time of the diagnostic assessment, the person may not need treatment from a psychiatrist or services from government agencies (one of the principal justifications for a diagnosis), although he or she may well benefit from relationship or career counselling (sic). However, should the person experience a divorce or unemployment, the signs may become more conspicuous and then warrant a diagnosis. It is perhaps not the severity of expression that is important, but the circumstances, expectations, and coping and support mechanisms."

Yes, dear readers, diagnoses _are_ weapons, er, tools: they are here to get you (or someone you care about) something that will help them.

Nothing in the above should be considered an endorsement on my part of Baron-Cohen's sex-based theory. In the Baron-Cohen world, women empathize and men sympathize. I find him unreadably offensive -- he just isn't reality based.

Here's his Systemizing Quotient screen:

http://glennrowe.net/BaronCohen/SystemizingQuotient/SystemizingQuotient.aspx

FWIW, I score the highly improbable (or improbably high) 51, and that's while giving non-systemizing answers to a variety of questions where my curiosity on a subject has been completely exhausted because I already know the answers I would otherwise be interested in. In fact, that's one of the biggest issues I have with these screens: the people designing them are really sloppy thinkers.

Attwood on Asperger's: Chapter 3

I complained in the previous post that I find it intellectually appalling that just by moving a person from one circumstance to a next they would qualify (or not qualify) for a diagnosis. That just doesn't make any sense to me, altho I'd certainly be the first to loudly advocate for changing one's life circumstances for the better.

"The reader will be interested to know that I have discovered a means of removing almost all of the characteristics that define Asperger's syndrome in any child or adult...If you are a parent, take your child with Asperger's syndrome to his or her bedroom. Leave the child alone in the bedroom and close the door behind you as you walk out of the room. The signs of Asperger's syndrome in your son or daughter have now disappeared."

Attwood isn't kidding, at least not entirely, and even tho he leaves the adult version of this as an exercise for the reader. He then goes on to tick off how this relates to the diagnostic criteria: no one else = no qualitative impairment in social interaction. No one to talk to, no speech and language peculiarities. I'd argue with that one, actually -- it's more a matter of no one to notice or care about the speech and language peculiarities. I talk to myself all the time and even I can tell I exhibit all my language oddities when I'm alone, even more so than when other people are around. You can do whatever you want as long as you like and no one will notice that it is "abnormal either in intensity or focus". That's not true either; I've heard from my cousin's kid all about her younger brother spending all his time in his room on the computer, and then not wanting to talk about anything else whenever he comes out.

So he's really wrong, that the signs go away in solitude, but he's really right that not having a bunch of judgmental people interfering with you is restorative, and that in our culture, the bedroom is often a place where you can modify the sensory environment to be less toxic. He also notes that a lot of us learn really well in solitude, if we have access to things like books, TVs, computers and so forth to learn from.

Attwood's chapter on Social Understanding and Friendship is really excellent. There are things I would quibble with (see above, and 1-1 on Social Stories TM describing, affirming and consolidating existing abilities and knowledge and what the child does well is _definitely_ only a minimum; cognitive research suggests it should be more like 3-1 or more to avoid the stories being associated with ignorance or failure).

On page 180: "Over time there is a progression to multiple and more abstract or complex interests such as periods of history, specific countries or cultures. Some children develop two or more simultaneous interests and the number of simultaneous interests increases with maturity." I had a sort of sinking feeling, and thought of what I had just put up in the Sticky here on LJ. Geez. Could I be any more representative.

A little while later, "For adolescents and adults, the search for the pattern or rules of life can include a fascination not only for the laws of science but the rules of law, leading to a career in the legal profession, and religious laws with a subsequent interest in the Bible and fundamental religions. This can also provide access to a peer group who share the same beliefs and a community with similar values. However, one [walkitout here: _who_, specifically?] must be careful that as a consequence of social vulnerability the person with Asperger's syndrome is not unwittingly recruited into extreme organizations. This can occur when the interest is politics, and the person expresses and acts upon 'black and white', or extreme views."

Swap "politics" for "religion" and you've described several generations on both sides of my family. I come from Mennonites and Jehovah's Witnesses (before they adopted the name Jehovah's Witness). I had figured out that "crazy religion" ran in the family. I was _just starting to entertain_ the idea that the "crazy religion" thing and the "autism" thing were one and the same. Where was this paragraph when I needed it?

Full review to follow at some point; in the mean time, worth reading. I bought this a while ago, but it was tough going at first. But having watched the EI people in action, and what the school has to offer, it's a lot easier to read now. It is what it is. I am what I am. You aren't going to _change_ us, altho you probably have some tips and tricks that we'll find helpful.

Just another cookbook or how to book. Those are easy.