Wednesday, May 03, 2006


Let me make something clear from the start here: I have an offical diagnosis of Asperger's Syndrome, an autism spectrum disorder that used to be thought of as rare but is increasingly more common than 'they' thought. It does affect my life in both positive and negative ways, and has had a profound impact on the path I've taken- largely due to decisions or actions that seemed rather small at the time, such as not making a phone call because I had a phone aversion/phobia. I'm not sure what it feels like for other people to be normal, but looking on it from the outside, you normal folks seem pretty boring to me, as a whole. So given a choice, I don't think I'd choose to be normal even if it were an option. I don't want a bland, white bread, 2 dimensional life, even if it is easier. Thank for the thought, though...really.

In that context, then, here is what I've been thinking about today: whether I could be called "disabled" or not. I function...with effort. I'm independent, even if it did take a damned long time for me to get that way (for example, I didn't get a driver's license until I was 30). Relationships.....uh, sore subject...but I don't think that's necessarily part of a criteria for being disabled, at least not if we're talking personal relationships. The main thing seems to be----> work.

I had a job about a year ago, working with an agency that provided services to developmentally disabled people. My clients varied from degrees of mental retardation (barely detectable to profound)to autistic (again, degrees) to cerebral palsy to spina bifida to I don't know what mental illness, though...that wasn't our area of expertise. When I applied for the job, I has heard of Asperger's, and a fellow aspie friend had suggested I might want to check into seeing if I had it, too...but I hadn't as yet followed up on it or even given it much thought. I honestly felt that the failure of my life was due to laziness, or other people's actions (which to be fair, was certainly a large factor, too) or just bad luck. I wondered how other people could sustain the effort required just to keep themselves up (clean clothes, make-up, daily shower, clean car, organized life, all that jazz) and do it so easily, when it was such a gargantuan task for me. Again, I figured that I must just be lazy...despite the fact that I did more physical labor in a day than most of them did in a week. I'm getting sidetracked here...... So, anyway, I apply for this job, and I get it. The aplication asks if I'm disabled, and I check "No", because as far as I knew, I was just "not quite with it" and possibly lazy, but otherwise just motivationally challenged. The advertisement for the position mentioned the fact that disabled employees would receive a higher rate of pay, and there was also a poster in the building posting this fact, for all to see. I don't remember how much higher, but the difference was reasonably significant.

Well, after some exposure to autistic people (who I hadn't ever interacted with much before unless you count undiagnosed family memmbers) a nagging sensation got ahold of me, and it became clearer with every interaction: these people made *sense*!!! No offense, but most of you folks don't, to me. Your way of thought doesn't make sense to my mind. I realized that I had a connection, and that there were also behavioral similarities between my client and I. I didn't realize how I looked until I saw her as a reflection...exaggerated, maybe, but a reflection of many of my own traits nevertheless. I began to feel hanuted, and afraid that I would lose my job if my employers found out. I found myself defending my client from the other workers and getting my personal feelings involved...why couldn't they leave her alone except for the things that really mattered? Why should it matter if she doesn't make sense to them? They were constantly telling her to shut up, and that what she said was nonsense...and it wasn't, not to me. Some of it was profound.

Finally I went to a psychologist (actually, he may have been a psychiatrist...not clear on that) and he did in fact diagnose me with Asperger's. I informed my workplaces. They started putting me only with clients who were retarded and pahsing out interactions with other autistics- the only people I could really relate to or, to my way of thinking, really help. I dodn't ask them if they would change my wages to those of a disabled person, because it seemed awkward. That wasn't the reason I got diagnosed; I did it for my own peace of mind and to try to find out what the heck was the matter with me. I didn't want to seem greedy. At any rate, they didn't change my pay. Other disabled workers continued to get what they got, and I got the normal wages.

So my question is, was that fair or right? Should I have gotten the higher wages? Am I disabled in that sense?

I do know that my work was hampered by my AS. They frequently made me do socially awkward things, like spending an entire hour or more alone in a guy's house with him, or meeting clients for the first time by simply driving up to their house and knocking on their door (the thought gives me the shudders!!!) or watching a kid who was particpating in a relay race that involved mass balloon popping and another woman shreiking excitedly at the top of her lungs (instant anxiety attack material). I wound up quitting, because they refused to accomodate me and the stress of feeling more like a client than a worker was becoming intolerable. They seemed pleased.

At my current job, I seem to do OK. I have a good work ethic and now that it's familiar, I love being at work. I feel safe there. The thing is, I very nearly didn't make it there, either. I don't know how many times I almost walked out of that place! It tooks me months and months to learn what most new girls soak up in a matter of weeks. For the first few days, I actually ran away from the customers! ;-) Even now....if my co-workers and employers were decidely intolerant of my idiosyncrisies, they could probably make life bad enough for me that I'd quit.

The irritating thing is that given my I.Q. and actual ability, I'm performing way below what I'd *like* to. I mean, it's basically higher end fast food. Occasionally it is frustrating to feel so subservient in that setting when, had I had an education past 8th grade, my social status could well have been more or less equal to anyone there. I don't particularly care about social status though, which is probably a large part of why I have none. On the other hand, I feel like a peon, a nothing, and I don't like that, either. I was supposed to be an artist, or a doctor, or..something wonderful. And, look at me. Not only am I just a lowly deli worker, I'm a deli worker who has to struggle to perform well at her job almost every day. It's......I don't else can I say it?

No comments:

Post a Comment