My wrist

I've had wrist problems almost my whole life. The furthest back I really remember it was in 4th grade. Writing in cursive was one of the most painful things I went through while in school, and it was a requirement. No one believed me back then.

I don't think my parents caught on to the truth until I was out of high school and the complaining about pain didn't stop. Once it didn't seem like I was being lazy to get out of school work, they finally believed me that I was in agony doing anything that used my right wrist.

When I was 19, I finally saw a doctor. They told me that it must be carpal tunnel but I had to beg to get tested. Their reasoning was that I'd been using computers my whole life and computers cause that. Problem is, I'd been playing piano just as long, and I was taught very early the proper way to hold my wrists to prevent strain and damage.

When I was tested for carpal tunnel, it came back negative. Tendonitis was ruled out due to the prolonged duration of the symptoms. Without any further testing, I was told I had arthritis and it was left at that. My hand and wrist were never x-rayed. Shortly afterward, I became uninsured (when my parents fell ill with cancer). I haven't been tested since.

Over the past year or two, the pain in my wrist has gotten worse and worse every day. What I used to feel only when exerting myself heavily, I now feel almost 24/7. On top of that, I now have a hard mass inside my wrist that has continued to increase in size to where it's visible from the outside.

Why does this trouble me so much? It's because my symptoms echo those of a bone tumor (which can appear on bone or tendon). Granted, the vast majority of the time, those are benign. However, in cases where they're neglected as long as mine has been, the only form of removal is amputation. That would result in the complete loss of my right hand.

I'm trying not to get worked up about this too much, as I'm still waiting to see a doctor (I have insurance now, I just have to wait as none are seeing new patients at the moment). Still the thought is VERY worrying.

As much of a major life change as something like a full (dominant) hand amputation would bring, I'm worrying about something trivial in the broad spectrum; one of my autistic obsessive niche interests: video games. They can't be played with one hand.

This is why I've lately been on such a kick, playing everything I can get ahold of. Buying an XBox360 and getting my PS2 and PSP. There are a handful of Wii and DS games I would still be able to play one handed, but the number is much lower than I would like.

I honestly think losing my hand would be easier of a transition than losing one of my niche interests. Hopefully it won't come to pass, but we'll have to wait and see.

Coming Out

I finally told my boss, after work yesterday (aka 8AM today), that I am autistic. My main reasons are that a coworker is taking advantage of me which is easier because of my autism, and we're having a new supervisor come in, in June.

The coworker is really pushing me, right now. He pulls schemes that I'm not catching onto for weeks at a time, and telling everyone else that I've said things I haven't. Now, it's out in the open that he's doing this and he's actually on the chopping block because of it.

The new supervisor is an issue for me because it's another new person to get used to suddenly. I want him to know ahead of time that I have strange body postures and don't look people in the eyes because of autism, not that I'm dishonest or hiding things.

None of this is a problem, and my boss is happy it's out in the open. Life is easy again. God, I love having that piece of paper with an official diagnosis, now. It was really worth all the effort :)

Surprise! Dream job!

I finally found a job, and started earlier this week. It was just going to be a job until I could find something else, but I was met with an amazing surprise. This is my dream job. My disability doesn't effect me at all, doing this, and I can excel like I'm truly capable of.

I am now a janitor. I work 3rd shift (over nights) at the Oklahoma University Law School. I show up at 10:30PM, long after everyone has left. I leave at 7AM, just before everyone arrives. I don't have any social pressures. I walk around the first floor and clean classrooms, board rooms, one court room, a cafe, a lounge full of fancy furniture, and two bathrooms (the only gross part). I listen to my iPod while I do this (usually science or wrestling podcasts).

I see no one while working. Because of that, I don't have to pretend to be social. I don't have to figure out what people mean when they speak to me. I don't have to deconstruct what I'm saying to make sure it conveys what I really mean. I don't get drained from being "on" through my whole shift. I can be myself fully.

Every job I've ever had, the social side of it has worn me out to the point where I'll get sick (real and pretend) to take much needed time to recoup afterward. If I didn't do this, I could end up crying in a quiet corner or the bathroom (something I've never admitted to before now). I'll never need that here, because I'll never be drained from constant social interaction.

Another giant plus is the lack of immediate supervision. I work fairly quickly on some things, and very slowly on others. Bosses hate this. Either I'm done early, or I take longer than others. If I was done early, I's have to find pointless busy work to keep me occupied so I looked productive (even though I already was). If I worked slow, I always got lectured on being lazy. Here, as long as the work is done and done well, it doesn't matter. I get my work done, and I can run at my own pace. If I need a short break to grab something to snack on, I can. As long as the work gets done. If it takes me an extra 30 minutes to finish something, I can take it. As long as the work gets done. I love this.

The last major difference is that I now work for the state (I didn't know this until my third night). Once I'm past my probationary period, I don't have to stress about being fired for any little thing (it's always a little thing with me, it seems). I'll have REAL job security finally. I won't have to worry about having a single bad day (which shouldn't happen with the social aspects removed, honestly), and rubbing someone the wrong way and losing my job in the process. I'm not going to slack off or doing anything dumb, of course. That's not me in the least. I just won't be stressed out about losing my source of income and having to deal with another round of terribly stressful interviews.

I am a janitor. I am an autistic janitor. I'm proud to be an autistic janitor. I love my new job. I don't want to ever have to look for work again. I'm home.

My past

Only knowing about my autism for a little over a year now, no one who knew me before that had any clue, obviously. I was called lazy a lot. A lot of people misinterpreted things I'd say and read in motives that I never had, destroying many friendships. I would be asked constantly about why I could seem so stupid at times, yet be so intelligent. All of these memories hurt me very badly.

I know it's not the best idea in the world, but part of me would love to call up everyone who I ever disappointed and say, "Hey! Sorry about that. I'm autistic!" It wouldn't make up for things I've done or forgotten, but it would make me feel better. That said, it's not something that is even near the scope of doable, and it will just come off as me making excuses for myself (something I've only recently learned about). That doesn't change the fact that I think about that constantly.

Most of the people are former employers, people I interviewed with, and teachers. I also wish I could tell my parents, but they both passed away three years ago.

One of my more painful memories is my very first job interview. I was sixteen years old, and applying at a CiCi's Pizza (all you can eat pizza buffet, if you haven't heard of it). My mom drove me to the interview, since I didn't have a license yet. I didn't understand the concept of dressing for an interview, yet. I wore the blue jeans that I wore every day of high school, and my favorite t-shirt that I usually wore at least three times a week (they were both so comfortable). The interview was going okay, but the guy doing it made a comment that came off as very rude to me, saying, "You'll need to get some pants that fit." My pants weren't very baggy, but the ankles were frayed from being cut off. I made a joke, trying to lighten the mood, and said, "Oh? I thought these fit just fine." I smiled as I said it, but looked towards the floor, avoiding eye contact. He didn't say anything. The interview finished, and as I was walking out to my mom's car, he came into the parking lot and yelled, "Don't bother coming back! I don't like your attitude!" To this day, I still don't really understand what he meant, but the emotional scar is still there.

I would love to be able to go back to that manager and tell him, "I'm sorry. I'm autistic. I thought I was making a joke and I guess it didn't translate well." It doesn't matter that it was 11 years ago, I relive it very often.

It's so strange to have an invisible disability, especially when I can fake being normal so easily sometimes.

eBay and Paypal protest (spread the word!)

Please spread this video, or the message as far as possible.

Labels

This was a post on Asperger Square 8. I hope they don't mine me posting it here, but it's something I really want to comment on.

I am Joe’s (High) Functioning Label. I serve many purposes for people who like to discuss Joe. What I do for Joe himself is less clear, depending often on Joe’s Point of View. I attach myself to Joe’s Autism Label during the Diagnostic Evaluation, which can occur at any point in Joe’s life, though early childhood is best, if Joe desires to be taken at all seriously. Bonding tightly with Joe’s Autism Label, I have the power to make Joe’s Autism “mild,” or less real. (Please note: Though I am not an official part of the diagnosis, this does not make me any less real.)
In discussions of Joe, you may hear that Joe is Notlikemychild (NLMC). NLMC is simply another name for High Functioning Autism. Joe, like other persons with this form of Autism, does not self injure. Joe may have a history of suicide attempts. Joe may have damage to vital organs from years of alcoholic drinking. Joe may have scars from burning or cutting himself. These do not count. Joe is High Functioning; therefore these things have nothing to do with Joe’s Autism. Joe should really know better. Though he may have head-banged, bitten himself and pulled his hair out as a child, Joe no longer does these things (at least not that anyone knows about).

Joe has self care skills which are adequate. Joe’s fear of eviction due to his inability to throw anything away is a result of Joe’s Laziness, not Joe’s Autism. Joe’s fears of legal repercussions due to the bills he forgot to pay are signs of Joe’s Irresponsibility. People with Real Autism lack self care skills on a more fundamental level. Joe remembers to go to the toilet almost every time he should. Joe prepares meals for himself daily. Please do not ask me to be more specific. Joe’s Nutritional Deficiency is not my fault.

Joe may communicate well by typing. As Joe’s Functioning Label, one of my responsibilities is to ensure that Joe not use this skill to speak about Autism. I sometimes fail at this, and in these cases Joe may be subjected to harsh criticism, ridicule or even threats for having forgotten that he is NLMC.

Sometimes, I prevent Joe from needing accommodations in school, and later in the workplace. Often, Joe will be unemployed as an adult. Sometimes he is underemployed, working at low paying jobs which do not engage his interests or make use of his skills. Joe may misunderstand directions or find himself unable to break inefficient patterns, even when warned by his employer. Joe may have difficulty relating to co-workers, quickly finding himself without allies. He may misinterpret the culture of the business he works for, making remarks which are “inappropriate” or failing to appear at the Optionally Required Social Event.

When Joe is fired, I am there to remind him (and everyone else) that this is his own fault. When Joe protests that the employer’s failure to accommodate his Autism may be at least a part of the problem, everyone looks at me in disbelief. I am the evidence Joe needed nothing. I am Joe’s Functioning Label.

What is this saying? Well, it's actually really simple.

I have high functioning autism. That label is actually a double edged sword. When I work with people, interact with people, or anything of the sort, and they're aware of my "high functioning autism" label; the way they view me is based on circumstances and changes frequently.

When I go for a job interview (or when working a job like I did at Hartford), and they know, they treat me like I'm an idiot because of it. I have autism. I must not be able to function without help at all times. This is not the case, of course.

That said, once I screw something up, I get the exact opposite: How can you screw up something so simple? You're "high functioning!"

This is the main problem with having a label like this. I am not my label. I have my own special set of strengths and weaknesses. Only by getting to know me will you get to know them. If you don't try, or I don't try, I'm set up to fail no matter what.

We need to move past these labels and just learn to help each other work toward common goals. Like mine, of being a functional member of society. That's all I want.

Apple TV

Not exactly an autism related video, but it has ties to it that I can't escape ;)