I has been a while since I wrote something, although my intentions where admirable or at least with high hopes to write frequently. But as it turns out that hasn’t been the case. Yes, when I started, I wrote multiple posts in the timeframe that I had set for myself. As it turns out that was mostly stuff that was boiled up inside of me for a long time and when it was written down, there where no lofty or interesting things to write replacing those stories/ideas. Like most things in my life I need (a lot of) time and (far) more than most people do, to form an idea, work it out, work it over, let it mature, formulate a conclusion and finally get it in a shape that it is also consumable for others, often followed with multiple adjustments made to it afterwards. This is the main reason why I didn’t write anything use full or somewhat thought out after that initial burst of stuff I posted.
At the same time my real world stress and the things that I had to handle there, made it impossible for me to get productive on the steampunk project side of things. So posting on the progress of that was out of the question because there was no progress, adding to the silence on this blog.
Then I felt the need to post at least something and this where the two post on gaming, the one thing I could manage to do while subjected to the stress and stuff of the real (non autistic) world. But I don’t think that these are my finest post, just pitiful attempts to keep up regular posting.
So I finally conceded and now know I will never be able to keep up an high frequency post schedule or any schedule what so ever. I will post when I have something I want to share and only then even if this means that it will be silent for long periods.
But as the title of this post suggest there is something I wanted to write about in this post, an idea that has been fermenting long enough to become something I can share.
There is something bugging me and that is when people that have autism (this includes me to some extend) acting like a jerk and they and most of the time those that have to deal with them like family, caregivers. etc. find this completely acceptable behavior because they have autism and thus keep being a jerk.
I belief my autism can explain why I sometimes act like a jerk and maybe soften the reaction to that behavior, by the way I have never ever the intention to be a jerk.
But I strongly resent it, when this jerky behavior is accepted because of the excuse “oh he has autism so he can’t help himself”, for I find it unacceptable and I really do not want to be a jerk, also because there will be, sometime in the future, someone that doesn’t know I have autism, or agrees with me that it is not an excuse and acts accordingly and hits me over my head for it.
So yes I do sometimes behave badly and I CAN LEARN to adjust it so “next” time I do not hurt or insult others in the process when I do something even if it is by stop doing something altogether because I labeled it as forbidden.
It is just like learning to operate in traffic, in my case I got a drivers license (even though it is expired at the time), so there are rules on the road, like driving on the right side of the road.
Even when this not always makes sense to me, for example there is something on the other side of the road I want to see, it is completely logical to me to drive on the other side of the road to have a better look and everybody on that road knows this, they will because they are fully aware of it act accordingly and start driving on the now right side of the road, just to allow me to see the thing I want to see.
And yes this is the way my mind really sees it, there is not one single neuron in my brain that opposes this idea.
But when I learned for my drivers license it was made clear to me that when participating in traffic, you will drive on the right side of the road period, it is simply not allowed to do otherwise.
(this posses an additional problem when you have to drive on de wrong side because there is no other way or because you are ordered to do so by a cop, but that is not the issue here).
So when I am driving and see something on the other side of the road that I want to see, I do not drive over like every fiber in my body wants to, but I look for a place where I can (and am allowed to) turn or park as close by as possible, then go over and look, or I decide at that moment that it is not worth the hassle and drive on without having a good look (although this will be very unlikely).
The same applies to social behaviors, if it is explained to me that some behavior of me is unwanted jerk like, than I can learn to stop doing it or adapt strategies to avoid the hurt or insult part of that behavior, even if I really, really, do not understand it how it is possible that my behavior is hurting or insulting someone, because that is not my intention (and everybody understands that, don’t they???).
But I can’t do it on my own, I need someone that explains that something I do is unwanted, because I don’t get it otherwise, and then work with me to change it.
This is probably why many people chose to accept jerky behavior from someone with autism, because to change it, they will have to invest time and effort and it is just easier to let it be, because you will have to prepare for a lot of effort and time to change my behavior even with my full willingness to cooperate with you (if only because of my inertial resentment (to put is lightly) to any change).
But by accepting behavior because it is easier, comes a other danger for it lets people stop questing anything we do because he/she has autism.
For example, someone perspires a lot when stressed out, she got autism so is stressed out a lot of the time and very easily (at first impression if you don’t know where to look for or just don’t want to spent the time doing so).
Now she gets admitted to a hospital to have surgery, the nursing staff is being briefed that she has autism (so pronto every single oddity they see is accepted and not questioned) and this staff is also briefed on the fact that she when stressed will sweat heavily.
Now comes the problem sweating can also be an indicator for dire problems after an surgery, but by briefing the nursing staff, whit the intention that they can anticipate better, letting them know when she experiences stress, even when she can’t express it herself, they stop looking at that indicator altogether, for everybody has stress in a hospital so nothing new here, just because there is autism involved.
Was it an non autistic person that perspires heavily, then they would have taken it in consideration when seeing it happening and still check if it is due to any complication or just the normal sweating for this person, because they understand what makes this person sweat more, they understand where excessive stress comes from or higher ambient temperature and/or strain causing it.
But because the autism women goes stressing out and starts the waterfalls on them, for putting the bedpan from the left side under her instead of the right side like they supposed to do, is something they do not want or are able to grasp, so they stop checking if it is from complications or stress and endangering the situation for this person, this all just because people are more and more seeing autism as an excuse instead of an explanation.
Although I altered the exact facts in this last example, it is something that has happened, luckily not to me.
This post or the idea behind it is still a work in progress, so it is nowhere complete in my mind, but as I understand this will enough to bring my point across, even when in my mind I need at least 3 times more text to explain it, I will stop so it doesn’t become an to tedious read.