Me and K went to an aascend meeting on saturday before we left for morro bay. The topic of the meeting was disclosure. It is a topic I often wonder about. I have wondered about it since before I ever heard of asperger’s and was telling people that ‘my brain doesn’t work right’. I still tell them that sometimes. It is nice to finally have a word, but it hasn’t made it any easier to tell people like I thought it would.
Part of me is afraid that other people will have the same idea about autism that I used to have. I used to think that it meant someone who couldn’t speak and sat in a corner banging their head against the wall. That is why I never accepted autism as a diagnosis. I thought it was just another dx that didn’t fit. I was wrong. It fits exactly.
Still, I worry that if I tell people, they will think I am stupid or retarded. When I’m not doing so good, people already think that sometimes. When I am doing good, people don’t think anything is wrong, which is nice, but it also puts pressure on me to be as “normal” as I can when I’m around them. Sometimes acting normal takes more energy than I have. Sometimes, I can’t even do it at all.
I have been lucky so far for the most part. The people I have told about my brain have been very supportive, and as understanding as they can be. The only time I’ve had trouble was in one martial arts school where the teacher completely rejected what I told him about my brain, both before and after I had a name for it. When I tried or requested to do things to take care of myself, I was given a hard time and a lecture about how everyone is like that and how I just needed to ‘get past it’. In my other martial arts school, my teachers have been helping me find new ways to learn things for many years. I am very very lucky to have teachers like that.
It is confusing to know who to tell, and when, and what to say. My instinct is to not tell people, but then again, my instinct is often not to talk to people at all. The people at the meeting all had their own ways of dealing with disclosure. Some people tell anyone, if the subject comes up. Some people just tell people when they have to. Others are very cautious about telling people because of the negative stigma attached to it, and because it can mess up their chances of getting a job or social services. One guy was saying how people’s responses to his disclosure have either been negative or neutral, so why should he tell anyone?
The thing is that I sometimes want people to know. It is a huge part of my life. It affects everything I do. It is who I am, or at least why I am who I am. I don’t know what I would tell them and how it would make things any easier. Karen tells people, and it is very helpful. I feel less pressure to be constantly vigilant about trying to act normal. For me, that means trying to have small talk with people, not sitting in a corner and staring blankly, and acting like I am understanding and keeping up with conversations, even though I lost track of what was going on after the first few words. It means trying to be still, and never twitching or making a sound that is just a sound, and not a word. It means using all of my energy to do the things that most people do without even thinking.
I am not much clearer on disclosure after the meeting than I was before. I guess it will be trial and error, like everything else. I can’t really imagine being comfortable talking about it. Having a word makes it seem a little easier than before, but I usually don’t have the words to explain it very well unless I am writing. At least now people can google it.
I hope someday I can find a way to be more comfortable with it, and be better at telling people about it. The hardest thing about finally finding out what is ‘wrong’ with me, has been finding out that there is no cure. Maybe this knowledge can help me stop spending so much energy fighting it all the time. I will always find ways to work around it. That is what I do. I think it would be much easier and take much less energy if I worked with myself instead of against myself. I often think of it as something outside of myself. A very bad thing that I am constantly fighting against. It is a fight I am terrified of losing. Maybe I don’t have to fight anymore. Maybe someday, I will be able to accept that it is something that is just a part of me; a part that isn’t necessarily good or bad; or maybe a part that is both good and bad.