Labels.

I've been thinking lately about whether I ought, someday, to get myself screened for Asperger's syndrome.    It's something I've been pondering for a while, really ever since I first heard about the classification.  (It wasn't identified widely as a distinct syndrome until 1994, when I was about twenty an adult) [corrected:  added text  in red].  Lately it's come to my attention more directly because the 6-year-old son of one of my good friends has recently received a diagnosis.  

In the absence of a professional diagnosis, I make the assumption with a grain of salt, but at this point I'm assuming that if I went through such a screening I would indeed be diagnosed with Asperger's.  There are a couple of online quizzes around to find out your "Asperger's Quotient," and I have taken them and score quite high, but most of my conviction comes from descriptions in what I've read, both by clinicians who work with people who have Asperger's diagnoses and by those people themselves.  

This is something that interests me mainly for entertainment value.   It's kind of fun to point at the various weirdnesses of my character, like the fact that I can't stand to have my plans changed, or my touch of synaesthesia**, or my intense discomfort at parties, and say "There's another marker of it!"  

The whole thing, especially looking around me at some of the children I know, has got me thinking about whether it is good, bad, or neutral to have a "label" for such a syndrome.   A lot of it depends on how the label is used.  A lot of the stigma of having a labeled diagnosis is gone; on the other hand, there is a tendency today to slot people into boxes based on diagnoses.  And different people feel differently about those who have been "labeled" in some way.  

Ironically, being the sort of person I am is

 (a) liable to get me a diagnosis of Asperger's if I look for it

 (b) liable to make me think a certain way about the label of Asperger's 

(c) liable to make me unable to predict how [cough] "normal" people react to that label.

Incidentally, I should add that in the controversy over whether Asperger's syndrome is a "disorder" or a "difference" — I have to say that I come down on the side of "difference."  The personality traits that are characteristic of Asperger's have benefits as well as difficulties — and I don't mean that there are "good traits and bad traits," I mean that the same traits often have a flip side to them.  I think a lot of the troubles that some individuals with Aspergers have, especially as children, are mostly products of institutional expectations — the way that schools are run and maybe have to be run, for instance, or the accepted formats of things like job interviews.

I was lonely as a child, with few friends.  But I would not trade the person I am today for a less lonely childhood.  Should a pill ever be invented that would suppress "Aspergerism," I wouldn't go back in time and medicate my five/six/seven-year-old self, or even my young adult self.  

On the other hand, I wish sometimes I could go back to the time before I knew of this neurological variant, and tell myself that my problems fitting in, my essential weirdness, were not because I was a bad, selfish kid; go back to being pregnant with my first child and tell myself, "Stop feeling sorry for your unborn baby because he has to have you for a mother." 

 Because having this label for myself has helped me.  I always thought there was essentially a moral failure there, and it made it so hard when I kept trying and failing to meet outward expectations.  It sounds like I'm trying to make excuses for not changing.   No, what I want to say is this:   understanding that the difficulties I have may be neurological — not moral — understanding that has shown me that I do have the ability to make my way in the world without hurting other people.  If it were a moral failure, if I was essentially a selfish person (as adults told me when I was a kid) then I couldn't change the way I behave towards people, or maybe I wouldn't care.  But instead I know that it's more a matter of being aware of the differences between myself and most people, and that the things I have trouble with are skills that can be learned, even if they don't come naturally to me.   

Here's an example.  Hannah called me last night to ask if I could watch her kids for her this morning.  Now, I already had plans for the morning.  They weren't the kind of plans that can't be changed:  we were all going to go to the gym while Oscar had his swimming lesson.  Nevertheless, the idea agitated me.  Changing plans always agitates me.  I am always thinking that whoever asked me to change my plans is TOTALLY UNREASONABLE.    I almost said no.  

But!  Knowledge of this label helped me here:

• Because I have an understanding of myself as probably someone with Aspergers syndrome, i.e., someone who's different from the general population, I understand that most people are able to change plans without agitation.
• Therefore, most people expect a certain amount of plans-changing.  
• Therefore it's not unreasonable for a good friend to ask me to watch her kids on short notice.  
• Also, I am aware that she would do the same thing for me, and it is only fair that I should do the same for her.  
• It is one of my long-term goals to be a more hospitable person and a good friend.  
• Hospitable people welcome unexpected guests.  Good friends help each other on short notice if they can.  
• I can help in this situation.
• Therefore the correct answer is….  "Yes, Hannah, of course I can do that."  QED.

(I tried to use a tone of voice that would convey that I was actually happy to help out, but probably failed there.  Fortunately, I think, Hannah is used to this from me.)

In a way, I like having the Asperger's label because it's useful for me to have a label for other people.  I don't really need to have a label for myself.  I understand myself fine.  But because there is a special syndrome that describes people kind of like me, I can turn that around and use it to understand the people who are not like me, but who nevertheless are quite common.  

People without Asperger syndrome have the following characteristics:

• they are extraordinarily eager to talk to many different kinds of people… 
• they obsessively insist on making eye contact with others who talk to them…
• they engage in bizarre rituals in which they must begin a conversation by discussing irrelevancies such as the weather or the performance of local sports teams before introducing the subject that is the purpose of the conversation…
• they show unusual apathy about numbers, lists, and classifications… 
• they can perform certain athletic maneuvers with uncanny accuracy… 
• they make friends promiscuously…

You get the idea.  If I can intellectually understand the expectations the world places on me, I can make my way in it far more easily.

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** The kind of synaesthesia I suspect I have (see my post about it — what to call it, kineto-graphic?) is not one that anyone seems to have a "test" for.  I recently thought of a way of designing a test that could be performed on me, and compared to the results given by other people, which might be able to determine whether I really am synaesthetic or whether I'm deluding myself because I just think it is so cool that I might really be a synaesthete.  I can't administer such a test to myself though, because I would already know the answers, so to speak.  If anyone is interested in working with me on such a project, let me know.