Friday, 29 August 2008

Physician, heal thyself

I sometimes wonder if I'm the only person in the world who actually has Asperger Syndrome (AS). You see I went to a psychologist and underwent testing to obtain a diagnosis. The only other places you get to "meet" people with AS are on the internet...but they're all "self diagnosed". How can you self diagnose such a thing? If your car engine won't start do you "self-diagnose" what the issue is? Then go around telling everyone that your widget has broken? If the central heating stops working in your house do you "self-diagnose" the issue and go around telling everyone your gromit has split? Of course not...cos if you're not a professional in the field then your diagnosis is worthless.

Yet there is a massive movement of people out there who claim to have AS because they did some pop test on the internet. These tests just ask basic questions and assume that AS is black and white and if you're fascinated with dates you have AS, and if you're not you don't. What rubbish. And how can an on-line test assess the impact your symptoms have on your life? None of these tests ask your background or attempt to eliminate other possible diagnosis. Basically…they're rubbish.

However people post their results on forums with pride, as if being AS is a sport and he who is "most" AS is the winner. Who is to say they didn't take the test a few times until they got the result they wanted? And they don't just stop there. Again I am seemingly the only person in the world who has not only diagnosed myself, but everyone in my life with AS. "My brother, who I'm sure has AS" "This guy in my class, who I'm sure has AS" "My mother, who I'm sure has AS". These are things you'll see plastered all over the internet. If diagnosis of such a complex thing is so simple then maybe I'm in the wrong job? Maybe I should take up psychology instead, and walk around dousing all and sundry with my armchair diagnosis.

As well as the self-diagnosers the other most common posting on internet forums is people asking complete stranger laymen to diagnose them based on a few traits they think proves they have AS.

Why are people seemingly so keen to wear this label? Is it an emo thing? Are people looking to justify their perceived failings in personality? Do they think that if they have AS they can stop blaming themselves and maybe even gain sympathy?

Another extension of this issue is the number of women who "have" AS (I put that in quotes as again they are always self-diagnosed). Official statistics tell us that it is rare for a women to have AS, but a quick search on the internet paints quite a different picture. There are almost as many women who claim to have AS as there are men. Either the professionals have got something terribly wrong, or these "self-diagnosed" women do not have AS at all. Maybe it is self-diagnosis that is wrong?


Catana said...

I've been reading your blog off and on and am now going back through the entire oevre. Interesting to find this post close to the beginning of your blogging, and wonder if you've changed your opinion about self-diagnosis since you posted it. As a woman with self-diagnosed AS, I agree with some of what you say. But... AS is one of those things that doesn't require professional training to determine. What it does require is honesty about yourself, and plenty of reading so that you actually know what AS is about. Why identify yourself as such? For me, and for many others, it provides answers you've been looking for all your life and that you haven't found anytwhere else. Knowing that I have AS fills in the last empty gaps in my self-knowledge. I don't need to announce it, claim that it entitles me to special privileges or that it confers some kind of superiority. It's a set of facts that either fits or doesn't fit.

By the way, I enjoy your blog tremendously. We have a great deal in common--particularly our outlook.

AS-4-L said...

Hi there. First of all, I'm glad you're enjoying my blog, it has certainly been of help to me to write it. Second of all my opinion on self diagnosis has not changed. I understand what you're saying, but the issue of diagnosis is one of frame of reference. You might research on the internet and self-analyse but until you've gone through a more official diagnosis you'll never appreciate how self-diagnosis is not enough. It's no different from anything that is about frame of reference - I know people who think they have a fast car and go on about how fast it is. I take them out in mine and afterwards they say "now that's a fast car". When your field of experience is limited it is hard to appreciate things out with that scope. What I'm getting at is that unless you've gone for a diagnosis you have no idea what it is they probe into, and it is only when you experience that will the penny drop that self-diagnosis is not enough.

Now don't get me wrong…like most people I did my research and I just "knew" that this is what was wrong with me. However one of the things about official diagnosis is not just what you have but what you don't have. They have to rule out other possible causes of your issues. As an aside I'll let you into something I haven't mentioned on my blog…but probably one of the more shocking moments during my GP visit was when he was leafing through my "record" and, casually in passing, dropped that there was a note against me of "possibly psychotic". I then thought back to something I read on the internet where it said that people with AS sometimes have wrongful psychotic diagnosis. Anyone with AS will understand why this is…when early behaviour is raw and you haven't learned yet what is appropriate and inappropriate your behaviour may indeed appear as if you have no rational control over it.

So I will disagree with you in saying that it does not require professional training to diagnose (as you need to not only know about AS, but about a range of similar conditions you might have), but agree that basic research can give you and very strong indication as to if you have AS.

For some people that's enough. Fine. Personally it wasn't enough for me. Since my diagnosis I have done a lot of soul searching, a lot of filling in blanks like you've mentioned…however I wouldn't have spent time doing that if there was any doubt in my mind about me having AS. If it turned out I didn't then that would have been wasted time.