A La Aspie

Earlier tonight, Ethan missed his orchestra recital. He was SO excited about this recital. He missed it, in the end, because of the band teacher’s failure to follow his 504 plan. I’ve had this post on tap for a few days but I think watching my Aspie kid cry his eyes out the whole way home and then be ok an hour later drove the point a little deeper.

I posted not too long ago about the great success we’ve had in the past few months. That success has continued unbroken for almost two solid months now. Almost long enough to breathe a sigh of relief… but I’m still flinching. I went for a massage this weekend and after the massage, I was talking to a friend about some of the emotional stuff that surfaced and I said “I’m still on the lookout.. I’m still on alert. It could still happen…

What I have noticed in Ethan is that when faced with an action, he often doesn’t realize that it is a series of decisions. But I’m confounded by the possibility that I do realize that it is a series of decisions only after learning to compensate that way - whereas a neurotypical doesn’t see it as a series of decisions… only as an action.

For instance : When I go grocery shopping, I buy what’s on sale and I freeze what we don’t need right then. I’m often pulling things out of the freezer to thaw when we need something. That goes for most meat, pre cooked meals and even bread. I’ve told Ethan a million times ‘when you put the bread in the freezer, lay it flat, not on top of anything and not squished. As long as I tell him that just before he puts it into the…

The Petri Dish specifically aside, a big part of this transition for me is willfully giving up a career that I’ve carefully built based upon experience and know-how. I don’t have a college education (yet!). After high school, I got a job repairing laptop computers. From there, it went to desktop and network support. From there, it went to network admin and specialized support. From there, it went to specialized support and account management… and so forth, and so on, etc, etc, et all… etc. Till today when I am a development project manager. Had I not carefully planned what I was doing with my career, I wouldn’t have the experience to be making the salary I do now. Not that it’s an incredible salary or anything but I’m making a decent salary for where I live and where I am in life.

The thing is, I was never cut out…

I have a confession to make. There are days when I doubt my dx of Asperger’s Syndrome. I think to myself… “it’s really such an elusive dx. I mean.. trouble socializing? Strange stims? Doesnt everyone rock every now and then? Doesnt everyone have trouble relating to others every now and then? Desn’t everyone have to fake it now and again? Today was a good day, after all. Maybe I really don’t have a disorder. Maybe I’m just overreacting about the difficulty I have. See… these people over here don’t even think it’s a disorder.. maybe I’m just perfectly normal and I just have bad days.”

And then… I have a day like today… when I find myself explaining to someone that their emotion confuses me. When I’m not able to cope with something that is outside what I was expecting and I struggle to pull myself from the brink of a…

I’ve expressed my frustration before at being able to compensate well enough to pass as ‘normal’ for the most part. Unless you watch me closely or have lots of contact with me, you probably won’t notice that I force eye contact or stand and move a little oddly or that my responses are canned. You probably won’t catch one of my ‘bad moments’ when I don’t have the energy to compensate. It’s frustrating to compensate well because it takes so much energy to do - and because people assume that just because I pass pretty well as normal that I must BE normal and capable of everything they are and they disregard the whole DISABILITY thing - or that it must not be so difficult to compensate. Well it IS difficult to compensate and I’m NOT capable of the same social interaction as everyone else. It physically IS NOT POSSIBLE.

So…

If you shelter half of a tree, the other half of the tree is likely to grow up and out and away from the barrier in order to get as much sun as possible to compensate for the part of the tree that is sheltered from the sun. Over time, the sheltered part is likely to wither and the non shelter part thrives.

Asperger’s Syndrome, among other things affects my social and emotional maturity. However, it doesnt affect intelligence. It’s as though it is a barrier between my social and emotional ability and the sun. My intelligence isn’t hampered… so the ways that I compensate for the social and emotional shortcomings are by using intelligence. I’m a fast learner, if by example, I mimic extraordinarily well and I learn to deal with emotional issues with logic. All of that use of intelligence instead of emotion gives me the mindset of someone…

I think excitement is one of those emotions that I don’t handle very well. Well… it’s not that I don’t handle it well.. it’s just that I don’t contain it well and I think I wear others out with it. But I get excited SO rarely… that when it happens, I want to immerse myself in it. And well… isn’t that what excitement is… something that’s hard to contain? So Bah. If you don’t like my excitement… just… Bah.

Poor body image and sense of self typically come along with an autistic spectrum disorder. I’m not sure how much research has gone into that aspect of it… but here’s how I see it.

I have an amazing grasp on the nuances of how I function. After years of trying to figure myself out, I’m fairly capable of stringing together the logical how and why things happen in my head, how my body works and how it all works together. But I have know idea WHO I am as a whole. What is Carrie? Who is Carrie? I look in the mirror and I see a face and a body.. but I don’t see ‘Carrie’ the same way I see Ryan or Ethan.

Self is defined through feelings the same way common sense is defined through the sensation of pain. If we touch something hot, it hurts and burns and we…

Frosty, Heidi and Frank (a new addition to one of our local radio stations which has switched to this Free FM talk format) - began a discussion on Asperger’s Syndrome yesterday based (I believe) upon this story about a 19 year old boy (William Freund) who went on a shooting rampage and has Asperger’s Syndrome.

I didn’t catch their discussion about the actual news story - but the story about the shooting, to me, sounds like the boy acted out of depression. A word about the William Freund story before I get to my point :

Depression is common among people with Asperger’s Syndrome but depression is not part of Asperger’s Syndrome. Asperger’s Syndrome does not make you kill people. I feel very deeply sympathetc for someone who got so depressed that they felt that was the only way to handle it. I’m on several Asperger Syndrome forums and never saw a…

As much as I realize that I am a work in progress and as tolerant as I am now of my differences and as aware I am of where I’m not like others, it’s still a rude awakening somehow when in a situation, I realize how very different I am from others.

I was in a meeting today with two people who I really admire and I really want to be on friendly terms with and as we were talking, jokes were made and we would laugh - but several times, I so said the WRONG thing. Not bad wrong - as in ‘Your hair looks horrible’ - but the joke was funny to me for a different reason than it was funny to them.. so I would say something and the laughter would just peter off. And int he moment, we were so wrapped up in business that it…