I'm thinking of posting the below online.
Do you think I should?
I'm undecided.
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This is long, but if you know me then you need to read it. Right to the end.
Time to come out and say it.
Some of you may know, some of you may not, some of those people accept it and some don't, but regardless of this I want to announce publicly that I have an autistic spectrum disorder. I accept it and I'm at peace with it enough to say it. I also want to try to explain some things to the few people I've told who just can't seem to accept this as the reason behind the way I sometimes behave, so here are a few bullet points (something I'm quite fond of..... along with brackets).
* For a start, the WAY I behave is rarely that odd if you examine the behaviour itself. But quite often when you put my behaviour in context with the situation that it's attached to then it can seem inappropriate or strange. This is because it's the thinking BEHIND my behaviour that goes wrong. I'm not (and people with aspergers generally aren't) known for exhibiting the types of behaviour that are most commonly associated with autism. Which leads to the next point.
* Autism is a SPECTRUM. One which I'm on the very low end of, but still on. Think of a fire danger sign. There are varying degrees of threat and each day the appropriate degree is indicated on the spectrum. This is how autism works, but the "threat" is the "level of autism" (not that I'm saying autism is a threat) and the "day of the week" is "the individual".
There are varying degrees with varying symptoms. Even just within the realm of aspergers itself the people who have it can be as different symptom-wise as the individuals with the condition. A popular saying amongst "Aspies" as we call ourselves is "If you've seen one Aspie, then you've seen one Aspie".
There is a false impression even amongst the very limited knowledge that some people tend to have of Aspergers that there are "standard symptoms" and for this reason the condition can go largely un-noticed for the most part. There are certainly "common symptoms" but they're merely common, not pre-requisites for the condition.
The effect that this has is that people often assume you're normal for the most part, albeit prone to being eccentric, insensitive, not quite right, or downright strange at times. Although the one thing I think you could say is common about us is that we can get quite frustrated with ourselves and social situations, which combined with our inablity to know instinctually how to express it appropriately can just make things worse.
* When I was a kid, I had (and now cover up) some of the more severe symptoms like:
-Echolalia (vocal repetition of sounds). I liked to repeat whatever vowels I'd just heard on the TV over and over again with different consonants. If there weren't a lot of people around I would work my way up from a whisper to a very loud roar. Singing now helps me get this out of my system for the most part, but you can still catch me doing it on rare occasions, although very quietly because I'm now old enough to know that it's weird.
-Violent rocking and repetitive/strange body movements. You may occasionally notice me exhibiting slightly odd body movements or twitching. This is because I learnt to surpress my physical ticks and desire to thrash around a little, but mostly I just disguise them as best I can.
On a side note I'm counting to 8 with each movement and then repeating it on the opposite side of my body. Things like this are why Aspergers can sometimes be misdiagnosed as obsessive compulsive disorder or people with Aspergers AND obsessive compulsive disorder can be diagnosed with just OCD. For the record I've seen doctors and specialists and none have suggested that I have OCD at all, it's apparently just my coping mechanism for the desire to move like this, which is generally because it's comforting. This is definitely one of the more common traits in people with Aspergers.
-Trouble with sound. Actually this is one I still struggle with and I'm unsure how it works exactly, but it's only particular sounds. If I'm watching TV and you're talking in the same room then no matter how quietly you're doing it, I lose the ability to separate what I want to hear out of the noise in the room. Add a microwave and/or a tap and chances are I'm sitting there trying extremely hard (in vain) to focus on the sound I want to hear.
I'm not talking about noise stopping me from hearing the TV, I'm talking about what might as well amount to white noise when you combine them. I also sometimes lose the ability to hear anything you might be saying directly to me. I can see (and hear) you talking, but I can't make it out. For some reason I can stand in a noisy club and have no trouble, but add an ambulance siren to the noise and I start to freak out a bit because it all blurs into one. I think that it may come down to certain combinations of sounds.
Unfortunately the only way I can hide this is to say that I just zoned out (a little annoying to someone standing in front of you talking right to your face) or to get the person to repeat themselves a few times. Sometimes I honestly have to give up trying. I get that this could make me seem like an as*hole.
-Obsessive and narrow interests & behaviour. This was an easy one to cover up. I just became a musician. But spend enough time with me and you'll notice that I'm not comfortable having lengthy conversations about much else. Science is another interest, politics as well. You'll also find that I have an encyclopaedic knowledge of useless facts about music and artists.
Then you have the opposite end, which is topics I bring up repeatedly but don't stay on for long. This is usually because I've learnt that they're acceptable things to talk about (and broadening my topical range helps me appear more normal), but they're things that I'm not actually very interested in. I can only speak for myself, but I know that I take comfort in being obsessive about particular interests that I seem to have an instinctual understanding of in the absence of an instinctual understanding of people.
On another side note, a normal person may say "I do exactly that too", but they're not doing it for the same reasons. I'm doing it because I managed to glean what I could from people over the years about appropriate social conversation through studying the people I meet and know after repeated rejection for not assimilating these topics into my conversations, while they're doing it because they just know to instinctually for the most part given their ability to read a conversation as more than just words. Even if neuro-typical people do have to learn something like this, it's very rarely after missing it for many, many years and finally pickup up on it.
As a small example you might sometimes notice one of my failings in this area, which is that if you ask me how I am, I'll respond honestly (not always the response people want) but not always ask the question back. This is because I have to remind myself that it's what you're supposed to do (I never could remember that one!). I guess the key here is that as I said straight off the bat here, my behaviour isn't odd in and of itself, the thinking behind it is.
There's more with regards to this, but I just wanted to point out that once upon a time it was much more obvious that I was different. Learning to appear normal has had its good and bad sides. Sometimes it's great that I seem normal, but when the facade occasionally breaks down and I need to explain myself I've quite often done so well at it that no-one wants to believe that there might be a reason that I just offended them, or acted a bit weird, or took something way too literally because I couldn't read read someone & so on. Most often they just naturally assume something negative about me, which I can only assume to be because it's easier to understand with a familiar explanation for such behaviour.
With all that said I also want to point out that I DO NOT use this as a cop-out. I try harder than most people you will ever meet to be a good friend, a good conversationalist and to be receptive to others because I desperately want to connect to other people (despite yet another common misconception to the contrary about autistic people), but it's something I'll always have to try hard at.
Like I said earlier there is a part of my brain that doesn't work like it does in neuro-typical people. Fact. It's not a mental illness, I can't think or train myself out of the way my brain is physically hard-wired, I can only do my best and hope that people understand.
But then understanding and education are the biggest problems facing people with Aspergers and high functioning autism. The few people you meet who know something about it usually don't know much and others still like to think they know everything. They don't. Reading an excerpt in a magazine or watching a documentary is just scratching the surface. Getting to know Aspergers is not an easy (or quick) process. I have it and I'm still (29 years in) discovering how it effects me and what it means in my day to day life.
One thing I do know (and probably half the reason it can be hard to see) is that I'm obviously not "disabled" in the way it's commonly perceived or anything like that. I'm just different. My brain is not damaged, just wired differently. But it can be very frustrating being blind to any part of communication that isn't written or verbal (and even then still struggle). This doesn't just include body language or tone of voice. There are MILLIONS of "rules" applied casually in day to day interactions between neuro-typical people and I don't get to see or understand them without careful study of people and even then, I'll never know if I really "get it".
But I do know that I'm a good person and I try very hard to exhibit that in my interactions with people. If I fail at times (and I'm sure after reading this that some of you can think back on times that I have, although hopefully now with a better understanding) then I just have to consider it a learning experience. But I do hope some of you might now take a closer a look at me, because when you really look hard enough, you can see that I'm different & that I think differently. I don't want to offend anyone but I know that some people are tempted to go the easy assumption when I've weirded them out a bit or behaved a bit strangely or perhaps outright offended them without realising, but that's very rarely (if ever) my intention. I'm just occasionally stumbling on my way to a better understanding of human interaction.
I think that's about it. I could go on for a lot longer and I'll probably read back over this once it's posted and see something I forgot or want to change but from this point onwards I'm officially open about the topic so if you want to know anything then you can just ask me. Hopefully I'm not just opening up an even more difficult can of social worms by doing this, but I've had enough of pretending. I am what I am and I'm fine with that. Hope y'all can dig.
Also, please try to understand how hard it was for me to do this and how offensive it is when my problems are just dismissed. Living like this can be exhausting and to have anyone be flippant about it without really knowing anything about it is endlessly frustrating. This was hard, but I'm hoping that it will help.
Cheers.
Kev.
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Far from these nonsense bars and their nowhere music - Augie March.
12 Sep 2010, 8:13 am
