Good Information About Autism

I realize that lately it may seem like I'm happy with my new hammer and the horse isn't getting any more dead, however, it's important that I say these things. It's been only about 6 months since I started researching AS or Autism in general and am still not officially diagnosed, although there's a chance I'll have one soon with the money for the diagnosis coming from an outside source. It's a lucky stroke for me because I'm not certain I could pay for the diagnosis otherwise.

For those who might like a primer, here's a recording of some news from the NPR show All Things Considered talking about the Global and Regional Asperger Syndrome Partnership (GRASP). I wish I could tell you when this aired, but it's on the GRASP website and I didn't hear the date in the recording.

I'm trying to practice "radical honesty" although that's not the reason why this is so important. Radical honesty is an interesting thing for someone with Asperger Syndrome (AS) or "aspie". There's a lot of talk amongst the autism community about whether or not having an official diagnosis is a good thing, just as whether or not disclosing your autism is a good thing. Although talk of "passing" for "neurotypical" (non-autistic) reminds me of talk amongst the queer community of "passing for straight". People in the queer community are concerned about "passing" for the same reason as autistics, because the members of both communities are frequently bullied although for different reasons.

The murder of Matthew Shepard was a tragic event. Shepard wasn't looking for trouble, he wasn't even in a public place, he was seduced in a private bar by two straight men with the express purpose of beating him. Ask yourself this question: if you had a hobby that you basically lived for -- doesn't matter what the hobby is, say bird watching -- and you knew that for whatever ambiguous reason, there were a lot of people who hated bird watchers, so much so that you couldn't even attend bird-watching groups without there being the nagging fear that the group might contain spies pretending to be bird watchers with the express purpose of beating the crap out of you, how would you cope? Even today there are still people who pretend to be gay to do vicious things to people in the queer community. Fortunately it's not usually so severe, but beatings do still happen. The good news out of Shepard's murder is that it raised awareness about hate crime and prompted social activism for the queer community.

Shepard is a dramatic example. Problems for autistics are much more subtle and much more likely to go unnoticed. I don't generally fear physical abuse (although I might if I found myself in certain testosterone-rich environments). I do fear or have feared quite a lot becoming homeless. I don't talk about that in particular so much -- I certainly don't mention it as often as it flashes through my mind. More often I mention my child support (although I'll omit mentioning the amount of the debt this time). I'm not sure if the average person makes the rather literal connection I do between the child support and either homelessness or sometimes death. I got fired from a job in 2006 and seriously considered suicide. At the time I was living about 50ft from a train. The reason for that is that although I've always wanted to find a place where I fit in (both work and social), to be accepted for my strengths and to be paid on the merit of my abilities, that hasn't really happened. What has happened is that I've been fired from an average of about 1.5 jobs per year for the past 7+ years. (That's a rough average, it's more than 1, less than 2.) I understood it more when I first started working because my fear of social situations at the time was so powerful that I continually made myself sick in the first few years and missed a lot of work. This was on the heels of such intense fear of people as a child that I couldn't buy a candy bar at a convenience store without an extreme fight-or-flight response. Apparently I was afraid the clerk at the 7-11 was going to yell at me or beat me.

I've come a long way from having an asthma attack over buying a candy-bar at a Stop-N-Go to being an outgoing, even extroverted employee of various software companies... and still according to the world around me, it's not enough. Not if I want to survive, not if I want to see my children again (who I haven't seen in 2 years and that for only a couple days and then not for several years before that, all due to finances), not if I want to consider something other than a bullet as a retirement plan.

People with autism fall through the cracks. We're obviously smart when it comes to our particular interests, like software in my case, we can quickly fit together puzzles that have other people scratching their heads (physical puzzles have actually been part of the diagnostic criteria). So it's natural for those outside the autism spectrum to think that there's an overall effect of our "Intelligence Quotient" (IQ) that applies to all areas of our lives. I.e. you're smart, therefore, you must be perfectly capable and just not want to hold down a job!

My natural, gut response to the "you must not want to hold down a job" comment is to be very snarky and say something sarcastic in response... I'll suppress that urge here. No, desire has nothing to do with it. The reality is that IQ doesn't really mean much. As a matter of fact, people with Asperger Syndrome typically score better on IQ tests as they get older, which is interesting because part of the way that IQ is measured is by age. This inclusion of age in the IQ test is supposed to compensate for the average amount that a person learns from year to year, so a person with an IQ of 100 who learns what the average person learns per year should take the same test and still score 100 a year or three or five years later. People with AS supposedly actually become smarter with age. Although ultimately imo that just goes to show how ridiculous IQ tests are to begin with. Intellectual capacities can't really be quantified that way. There's no correlation between a person being good with math or spacial puzzles and being good with social situations.

No matter how much I work at trying to figure people out, I'm constantly, neurotically second-guessing every word out of my mouth for fear that I'm going to unintentionally offend someone. The same is true of my contributions to mailing lists, blogs, etc. Aside from being a very distracted individual, that's another part of the reason why my blogs end up being so freakishly long (in comparison to others). This blog was intended originally to be a lot shorter. :) Though I'd also like to briefly address the other complaint I hear people make frequently (after the "you're just not trying hard enough / just don't want to work" comment), and that's the "you're using x as a crutch". Quick question. If someone is using something as a crutch, do they generally go around telling people it's a strength? Or do they just look for ways to be incompetent in every area? Do people who're using something as a crutch generally spend nearly 24-7 working in the hopes of succeeding in an entrepreneurial endeavor? In my case I have volumes of work that's generally available to the public for anyone who's interested in seeing what I've been up to. (Potential employers have all but flatly refused to consider the work I've done as evidence of my abilities, up to and including Fig Leaf.)

I wanted to post this article because I want people to know about not just my situation but I want people to know more about autism in general. I wan't people to understand that Amanda Baggs is a very intelligent woman, who through a quirk of neurology, can't speak any language understood by humans. For this reason she's always been referred to as a "low functioning" autistic. Yet she's a prolific blogger.

I'm also going to go out on a limb here in keeping with the notion of "radical honesty". As I said, it's an "interesting" prospect for someone with AS. People with AS generally speaking don't do "ulterior motives". We're not good liars. We may at times be decent actors with practice, but for whatever reason, most of us find lying almost physically, palpably uncomfortable. I myself find it almost physically challenging to just "shut up" when I see or hear someone say something on a subject that's important to me (and there are many), particularly when I disagree with the "conventional wisdom". So for many of us "radical honesty" is less an ideal than it is a natural state (although it is also an ideal for me). I've known this about myself for a very long time. Many months ago, before I had started researching Autism, I tried to explain this phenomenon on the Extreme Honesty forum on Tribe. And true to form, the experience is so foreign to the average person that several of the people on that tribe called me a liar! Did I say "foreign"? I meant "alien" as in "extra terrestrial" as in Wrong Planet -- the most popular website for autistics currently.

But I do try. I make a herculean effort at times to keep quiet... When I shouldn't need to really... I agree with Adlai Stephenson that a free society is one in which it is safe to be unpopular and unfortunately that's not true here in the US at least not yet. I was watching just recently some video of several of the leaders of Exodus International (part of the ex-gay movement) who had resigned from the organization, apologizing for the damage they had done and admitting to complete and total failure after years of effort at the objective of altering the members' urges. One of them mentioned a young man who under the pressure of the judgment that his sexual orientation was "wrong", chose to cut up his genitals and poor alcohol into the wounds as a form of penance for his "impure thoughts".

It seems fairly often people choose to hurt us, thinking that somehow it will help. I may not be mutilating myself physically, although I have in the past contemplated suicide as a direct result of my inability to retain a steady income appropriate for my skills and substantial enough to support my family. When I was arrested for being poor a couple years ago (driving w/ a license that was suspended for child support), my father's response to the news was "I can't help him" (which was a lie), "he'll have to figure it out on his own". According to him, I'm just a deliberate irresponsible screw-up and perhaps similarly to Exodus International that it's nothing a little "tough love" can't fix. We're different, damn it! That is all. It doesn't make us tainted, disturbed, lazy, irresponsible, sick, afflicted or evil. We don't need to be "fixed" - we need people (in my case the state) to have realistic expectations.

So here's the limb I'm going out on. As I was perusing a bit of autistic research today, I came across GRASP and I listened to the All Things Considered clip I posted above and I scrolled down on the grasp site and saw the poster of Sigourney Weaver who's receiving their DNA award for 2008. "the award itself--the physical object--shall be a round peg in a square hole, in reference to the "square peg in a round hole" that we are often referred to as. This acknowledges that our honorees probably didn't fit so correctly into the societal mode themselves." I read the quote, "Not everyone on the autism spectrum wants to be cured." and I cried... I'm sitting in the office at my day job, with just a cheap particle-board barrier between me and the rest of the office and I'm crying. I can't stop... bawling like a child...

So for those who may be interested in finding out more about autism, here are a couple of additional links to sites I'm researching.

And lastly, thank you for reading. :)

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