Wednesday, September 22, 2010

Why I am here. Why am I here? Why are you here?

So I'm going somewhat against the grain of some advice I was given from someone close to me about "shouting out to the world" the fact that I was recently diagnosed with a high-functioning form of autism called Aspergers Syndrome, that it would be a bad idea to put this information out there on my Facebook page. Maybe that's true and maybe I might still do that at some point, but for now? I need to start anonymously mashing the keyboard in hopes that some of things I'm going through can be of use to someone else trying to find out if they have this ability/disability too. God knows I could have used more personal experiences about what it's like to have this when I first discovered some info about Aspergers over 10 years ago...

"What the fcuk is Aspergers Syndrome" is probably crossing your mind right now, if you don't know what it is. If you have heard of it or know a bit about autism, you might have the "Rain Man" image in your head (like I did). It's OK, there are a ton of stereotypes, misconceptions, and myths about this syndrome out there. I know because they totally mess with my head, and is the reason why I've been secretive about moving halfway across the country to get a professional opinion on whether or not I have this - and once I did, why I've been so quiet about it. This bottling up of what's going on with me is driving me absolutely fugging crazy, but it's not something I really know how to bring up to people in my life, since I don't exactly display what some would say are obvious external characteristics. Autism and Aspergers are on what they call a "spectrum", where the degree of functioning varies and there is a wide range of symptoms.

"But you don't seem autistic." Even people who know a great deal about autism aren't immune to saying this to me, so I have to explain it here how I've been affected by being an "Aspie". I hope that as time goes by, I'll be able to focus more on the positive and creative aspects of having Aspergers, but for now I'll just mention some of the obvious difficulties I'm trying to overcome.

Non-verbal communication. This is where the start of my "research" came into play in my mid 20's, during a conversation with a friend who mentioned something about a woman's body language and how it means they are feeling attracted to you. I had no idea what he was talking about. The thought had never crossed my mind, that there were signals being transmitted without words being said. For years prior to this revelation, I'd been frustrated by friends telling me that "that girl over there was totally checking you out" and me having to ask "who? where?" (of course they wouldn't tell me who or where, for whatever reason... thanks guys!). Worse would be the stories (much later of course) that a girl I knew had a thing for me that I was completely unaware of (and often I had a thing for her too). As a result of not having a clue and having an incredibly difficult time with eye contact, I was single (minus a couple relationships) damn near the whole time after high school all the way up until about 4 years ago at the age of 31 (part of the reason why I focus on women in regard to non-verbal communication, but I have a hard time with reading everyone).

Friends. I've had tons of friends over the years, in several stages of life, but the one common factor is that I don't have a clue how to sustain a friendship. I'm a good looking, intelligent, charming guy, and I usually have had a lot of good things going on in my life, so I haven't really lacked ways to meet new friends like some with Aspergers might have difficulty with. From what I've read about this, there are certain things that Aspies typically don't pick up, namely the ability to take a friendship to a certain level and sustain it. Every friend I've ever had has reached a point where (for whatever reason) we don't communicate as much as we did, then the next thing I know we're not talking at all.

The past few years have been VERY chaotic for me, and I've had some bouts of withdrawal from my friends for months at a time, so that hasn't helped things either, and I certainly haven't been able to explain what it is that had been going on with me (at the time, I simply didn't know). Part of that too I've noticed, that I don't have friends my age, as whatever group of friends I'm in has steadily been in their mid to late 20's, despite my getting older. People my age are doing the adult thing, family, kids, stable career, etc which I definitely can't relate with at all, making peer relationships even harder.

Intense interest, repetitive behaviours, and obsessions. This is where the weird stuff you might be thinking of comes into play, the stuff that makes some people with autism immediately jump out at you make you think something isn't quite right about them. No, I can't tell you the square root of 214573 to 10 decimal places.I don't play weird video games obsessively (I did have the original Nintendo 20 years ago though). Best yet, I'm a fairly introverted quiet guy, so I don't just go up to people and blurt things out or try to talk to someone about my interests, unless I'm 100% positive they share that interest.

I don't think I did this consciously, but as Taylor Morris has said in a video blog, I "put" my interests and behaviours into things that seem normal. I never played a down of organized football, but I can tell you the team name and location of almost every major college football team in the country, and a host of other tidbits regarding college football history and a bit of college basketball. I hate pro sports, but I used to be a fan of MLB and the NFL and knew a ton of stats, records, etc. I'm told that when I was 2 years old, I could name every single NFL team (I don't remember this).

As far as a repetitive thing I do? I tend to rub the top of my hands, especially when nervous, in a way you might not notice. It looks like what you might see someone do after coming in out of the cold, so it doesn't look out of place when I do it in the winter (and there's 9 months of that here!). Summer? Hands in the pockets to keep from doing that. Like Taylor mentioned, I walk a lot, especially when on the phone. I can't sit still when on the phone (definitely a nervous habit), and have probably walked miles during a long phone conversations.

Meltdowns. A part of life on the spectrum that's hard to avoid. I don't flip out and start screaming and/or flailing around (thankfully). I do have the opposite reaction, where I will get very tired and want to withdraw for a little while from whatever stimulus has gotten me overloaded, like usually having Sundays as a down day to relax and rest after an intense weekend. Sometimes I get so overloaded or stressed that I might withdraw from friends and family for extended periods, because I just can't handle or explain what's going on (up until recently, it was hard since I didn't have a clue).

Sleep. This isn't something that's officially recognized in the diagnostic books, but is know to be a pervasive problem amongst those with Aspergers (two-thirds of us or more). I have a sneaking suspicion that I might be deficient in melatonin production, as I have an immense amount of difficulty in getting to sleep, which always leads to an equal amount of difficulty in waking up. Having problems with both falling asleep and waking can lead to my body clock cycling in a way that I'm up all night and sleeping all day - and then the sleep cycle slowly drifts back so I'm up during the day and sleeping at night (and then reverses again). I'm currently in the midst of getting re-evaluated for the sleep difficulties, so I'll know more about this in the coming weeks or months, though I hope it doesn't take that long.

OK, so that's the outward stuff in a nutshell. I'll be throwing something up on here soon about how all this stuff ties together to further complicate each symptom and what difficulties I'm trying to work through to make having this syndrome at least manageable in the near term. I've seen and heard the stories of those who had the benefit of a diagnosis earlier in life and how they've harnessed the positive aspects of Aspergers, and hope to have some "FCUK YES I DID IT!" type posts after working through some of the crap that's tripped me up over the years.


  1. I believe it is possible to have Asperger's Syndrome even though you act "normal" and no one would suspect that you have it. I just recently discovered that I have a lot of Asperger's traits only because I was told my son did. I think some people with Asperger's are fully aware of how others perceive them and learn to act "normal" even though the act they are putting on is a way of being that most people do naturally without acting.

  2. I think that's part of the "problem", that since we don't seem different, just a bit odd (possibly), and getting help or even that there is a problem never occurs to anyone. I just read some papers from my high school days, and that statement was spelled out specifically. It took until my mid 30's to realize that things weren't the way they ought to be, and that there must be a reason why.

    I don't know about acting normal, I've always acted what seems normal to me and what seems normal to everyone around me. However, my interpretation of that might be completely wrong, and that can and sometimes does lead to problems.

    Thanks for the comment!

  3. Ok, trying to post a comment...again.

    I like ur blog.I found it through WP.

    Not much else to say right now, other than I too come across normal most of the time,

    except when writing comments,
    apparently :)

  4. Thanks. I'm still trying to figure out how everything work on here. I think some comments got sent to spam, but I turned that filter off. I'm not getting enough traffic to worry about spam comments yet, but I hope to keep blogging away so there's something new to read often. :)

  5. Oh, no it didnt go to spam.I just got confused at the options.I clicked the first one " google account" cause I didnt see the anonymous or name/url one, but at first I had no idea what that meant and wasnt sure what to click.Trying to figure out this blogging thing myself:)