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.

____________________________________

** 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.

Comments

[MelanieB]

My sister is very likely somewhere on the Asperger's spectrum. Never officially diagnosed; but unofficially a doc who did a neuropsych evalution on her said yeah she's got enough of the markers. We've both found that the label helps quite a bit. It helps me be patient and understanding about many of those things she can't change. It helps her develop some coping mechanisms. It often helps to contextualize problems she has with coworkers and friends.

[Kate]

You know, I've been reading your blog for a few years now, and I think if someone asked I would have assumed you did have Aspergers...your writing is very analytical in a way I associate with Asperger's adults. So for me it definitely doesn't carry a negative association.

I know several adults with Aspergers online who call the rest of us "NTs" as in 'neuro-typicals'. It makes me chuckle, because the term itself is so analytical and technically correct, which are traits I expect from adult Aspies. :-D

[Jamie]

Hmmm, I am going to encourage you not to apply that label, or at least not yet. I just read Born on a Blue Day -- a good read, written by a man with Asperger's, that describes a very different kind of life.

The traits you're describing all exist on a continuum. I also have a hard time with change. My husband and I were just talking about my automatic "no" response to new ideas on Friday, when he asked me if I'd like to take the older boys to see Macbeth and leave him home with the littles. (I wound up going, because I have learned to think twice about that automatic response.) Likewise with social interaction difficulties -- there are many, many people in the world who hate parties and find them exhausting or overwhelming.

I think there are a lot of us out there who struggled as smart, reserved kids with not knowing exactly how to talk to peers. Would they be interested in the difference between the bicuspid and the tricuspid valves of the heart? [Note to 10yo self: No.] Was the thing I wanted to bring up in conversation common knowledge, or did I need to offer some background?

I am thinking back to our one face-to-face conversation, while recognizing that it's unwise to base too much on a single encounter. In my experience, people with Asperger's have a lot more trouble with things like eye contact, conversational reciprocity, picking up on jokes. You offered us a ride back to our B&B, recognizing that that it was a chilly night and a longish walk. That kind of empathy would elude many people with Asperger's.

[bearing]

I got the impression that Daniel Tammet (writer of Born on a Blue Day) was more autistic than Aspergers?

As for me, I *have* developed *some* social skills as an adult... and this isn't unusual, which is why, I believe, the diagnosis of Aspergers in an adult requires (if possible) an interview with a parent or caregiver who can describe the subject's behavior as a child.

[Barbara C.]

I think I would be hesitant about labeling such a thing as well. I think there is a difference between natural temperament and a neurological disorder. (I thought that Aspergers is on the autism spectrum, which I think is classified as a disorder.)

And not that I am accusing you of this, because I don't know you in real life at all, but it almost seems like Asperger's is the "favorite self-diagnosis of the day" to explain away any seeming eccentricity whereas ten years ago it may have been OCD.

[Jamie]

I agree with Barbara about Asperger's being viewed as an autistic spectrum disorder.

Certainly there's a range of severity for people with Asperger's, and in more ways than one Daniel Tammet isn't representative.

[bearing]

Fair enough -- like I said, grain of salt in the absence of professional diagnosis... but I do feel a strong connection to the descriptions I have been reading.

[anon]

One of my boys is on the spectrum (educational diagnosis) and I haven't told him yet--because of fear of labels and how that might box him in at a young age (he's 8). He's so smart, and I already see him using his IEP to his advantage, in that I can write his dictations because he has difficulty with handwriting, so sometimes he just doesn't do any work at school knowing that I'll write it for him at home. Which I guess is beside the point. Assuming you do get a diagnosis of Aspergers, or at least having a self-diagnosis somehow seems to help you, according to this post, which would suggest that it might be some comfort to my son if I actually told him of his diagnosis. I do not want to be the mother that follows him around whispering to any onlookers, "He's got Aspergers" in order to excuse any idiosyncratic behavior, even though it's tempting at times. But I wish you would go ahead and get the evaluation and then let us know if it benefits you to have a label, should you have one. I can't decide when or if to let him know, because he's high functioning enough, he could go through life just assuming, as you say, he has a difference, but not a disorder.

[Kate]

Our eldest son was a very difficult child and when we found out he fit the Asperger's profile it explained a lot of things. He is very bright - "genius" has been applied to him many times, but he is so inept socially and in dealing with change. Knowing he has Asp. helped us to help him. We had to guide him through situations that other children learned naturally. We could not just assume that he would "get" certain behaviors or adapt easily. It also helped my family see that he wasn't this way because we were bad parents (my father stepped in once and physically punished my child because he thought the problem was I didn't use corporal punishment. It didn't help at all, naturally.) I think that is the benefit of diagnosis. I wish we had known sooner - it would have saved a lot of battles when we assumed he was being "bad" or willful.

[Amber]

I just took that test you linked to and scored a 36. Fascinating. I think my husband would score pretty high on the test too. Really, I'm not sure what to make of it, and I think Barbara C has a definite point.

I prefer to think of myself as a strong INTJ rather than having some sort of neurological diagnosis. I'd love to see some research/discussion of Myers-Briggs personality types and the whole autism spectrum disorder world. I think I prefer the Myers-Briggs perspective that says there are many different general personality types, rather than the typical clinical approach that seems to say there is one normal set of behaviors and lots of abnormal sets of behaviors.