Sunday, August 22, 2010

Disclosure exhaustion

So, with having a baby comes the initiation of pediatric care and of course being around a ton of medical professionals.  So one of my questions for the pediatrician's office was if we ended up staying in town long enough for Taliesin for get old enough for it to matter, would they feel prepared and confident dealing with him possibly being on the autistic spectrum.  And of course, you can't ask that question without being asked in turn why that is a concern.  So I end up disclosing that I'm technically on the spectrum.  The PA-C handled the question very professionally and was very friendly and polite in discussing it.  There's no particular reason that I shouldn't have asked that question, and when we filled out family medical history intake forms it would have come up one way or another.  But, for whatever reason it still terrifies me to talk about it.  I mean literally, to the extent that I start feeling weak and slightly shaky.  It was really annoying because I thought I had started to get over that reaction.

I tend to swing one way and then the other with disclosure issues.  Sometimes I act as if talking about it with people who don't already know would be the last thing I'd ever want to do, sometimes I feel desperate to be able to talk about it but somehow feel that I can't.  Sometimes I slide right past such a disclosure without getting nervous at all. 

Granted, I've had limited negative experiences with disclosing.  Typically that is because I try to make dead certain any potential candidate for disclosure is really emotionally safe before I even think about it.  Oftentimes, people aren't even unpleasant, they just spend the next while grilling me on why I don't focus on the positive aspects of my life instead of the negative and aren't I practically creating my own hell by allowing anything bad to have a name.  Sometimes people have reacted by giving me a strong emotional shove to pick myself up out of a depression and refocus.  Sometimes people react by denying the validity or perhaps the existance of my emotional and mental realities.  And when they do that, sometimes people can be downright mean about it and I mean dirty mean about it.

And then there are the other experiences where people find it fascinating, don't even care, don't remember, set up networks to help protect me from social situations I'm afraid of, or treat it as a mere medical oddity.  Those are often the most pleasant interactions.  I even had one situation at work where I got to help relax a coworker out being afraid to have a child because they realized they were at a high genetic risk of having a child with it.  That was an extraordinary experience.

I guess there's two components to it.  I like interactions to predictable, and disclosing on a medical subject that is, shall we say, such a socially hyped issue is like rolling dice.  You might get anything good or bad out of it.  The other component is that almost for as long as I can remember a lot of people have been unable to see past the nerdy smart kid to see me as a person and might insist on me playing the role of the nerdy smart kid if they even interacted with me at all.  I get so tired playing the one role over and over again part of me tries to refuse to play along.  Asperger Syndrome has been such a crucial part of that social scenario played on loop that I almost never manage to control that as a result I don't want to talk about it, for fear that someone knowing that part of me will conveniently use it to reinforce the stereotypes they expect me to work within.  Because the AS touches almost every part of my personality, interests, and behavior refusing to socially acknowledge its presence messes with me in a lot of ways.  Think of an elephant in a rather small room that only I can see and only I can bump into and I'm trying to walk around it.  Sometimes it can be nice to tell someone that I'm sorry I can't meet your expectations because there is an elephant in the way and I have to walk around it first to do what you want me to do.  But since I'm the only one who can see the elephant, people don't always believe me that its there, so I don't like talking about it either.  And like a place on your tongue that you keep biting, not being able to react to the elephant properly just makes it seem that much bigger.

In any case I'm off to a great start disclosing it to the pediatricians clinic and when I struggled to do it there I got annoyed at myself and intentionally disclosed to a random nurse when I didn't have to (which was also a very positive experience) and also had a near disclosure experience in Priesthood meeting today.  So I simply feel exhausted with the entire business.  I feel less annoyed with myself, but still struggling to find a nice convenient border that says this is when I talk about this and when I don't.  Not that I haven't agonized over that subject for hours, purchased and read books that discuss it, and otherwise beaten the subject to death in my own head.  Its just that social context is so dynamic, trying to find a simple rule for how to deal with it is like trying to use a geometrically straight line to travel in real geographical space.  Sometimes there are mountains, or elephants, in the way.

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