When I created this blog I planned to write one or two times a week, at the most.
This to keeping it fun to write and it doesn’t becomes a burden/obligation.
But now I will be trying posting much more frequent, because I’m also in the middle of setting up an website, using a lot of (old) content if have written over the last few years, all these pieces, after I have translated them, just look like they were made to be published on this blog, so sorry for the overdose (mainly off autism related posts) it will stop when I’m finished with translating these (old) texts.
je kan de Nederlandse versie hier vinden.
Introduction to this piece:
This is a “short story” was written a year or two ago and it was meant to give another little peek into my/an autistic brain, specific why routines and rituals are so important.
It was not, is not, intended to marginalize your perception of the world and your struggles in life. I was/am only trying to find different ways to explain autism to non-autistic people (caregivers and others that are closely involved with me).
Sometimes my imaginary situations will hit home, totally explain what I am trying to get across for some people, at the same time missing it’s meaning completely too other people, even offending some of them.
This I never ever my intention, none of my writings is ever intentional offending or aimed to hurt someone(s).
But because I am a somewhat smart person with autism, my thoughts and writings are sometimes to much philosophical, deep and hard to follow, this is also due to the mental corners and hops my brain makes, which are totally different from your thought processes. This is why more than once someone was offended by my writings, because he/she picked out a specific point I made, often this point was only meant to smooth out a hop or corner I made, so the reader could follow me.
Because I am a butthead when it involves emotional and social consideration, I never got it, that this sentence could be (unintentional) upsetting to someone.
I write this disclaimer now because of the totally mixed reactions I got back after this specific piece, but also the reactions on other pieces I will post in the future where received so different form: “wow great insight” to “sorry could not get thru the first part, so I didn’t finish it” to “you are despicable if you think this of me”.
And I also will keep adding these (enoying long) introductions, trying to take the sting out of some of the things that got people upset. But also to set the right context, for most were written in the therapeutic setting and those around me knew what I was all about at that time, so I omitted most of the context in the pieces because it was known by the readers.
On the side:
One of the things that is bothering me also is something I didn’t encounter here yet, but the more stuff I put out there the more the risk of it happening occurs.
I happened to my more than once so I really know it will.
NONE of the things I write is intended to get into the victim role or to being pitied upon.
I feel good about myself, I enjoy being me, although these feelings are to comprehensive, due to my emotion blindness, to understand, but rational I have concluded that this is the case.
I only try to give some insight and ask of you to maybe think of it when I or someone else with autism blunders or behaves/reacts a little different from what you expected.
Maybe show some consideration and allow me/them to do things my/their own way or in my/their own speed. So not demanding it of you, even when you know why I do something, it doesn’t mean you have to agree or change your reaction in any way, it would be nice but there it stops for me.
If I don’t pay you to help me and/or you aren’t closely involved with me, I don’t expect off you, don’t want to expect of you, to change the way you are/act just so it’s more convenient to me.
That would mean that I am just as much a hindrance to you, as the non-autistic world can be to me, that’s like fight evil with evil, and that is not the way I do things nor want to do things.
Maybe if you have the room to do so, if it doesn’t interfere with your own plan and/or gives you a good feeling, you will show consideration to my quirks, but only by your own choice.
Many things I will write about, show that I have to work hard, just to keep up with you.
But I don’t experience this (working extra hard) myself in that way, because I only know my world/my way and this means I just work as much/little as always and I’m fine with that.
I really can’t imagine how it would be doing it your “less hard working” way.
I have learned the past few years that it works this way and with that knowledge I wrote these pieces/stories to make it understandable to you, but to me as well, to accept it myself that I not always can keep up with you and I don’t have to.
Like when an astronaut would say to you, how great it feels to walk/work on the moon with less gravity, you maybe can imagining how that would be, but you are unable to really comprehend it, because lifting a cup is as heavy as it is, yes you could take a lighter cup but your arm, bones, skin still get the 1G pull. You only know a 1G world and no much of information will make you able to imaging a thru 0,7G experience, but by adding weights/pressure to your body you can simulate an 1,2G experience. So you can knowing/imaging what it is to work harder, but not what it would be to work less than your minimum.
I know this is very philosophical but just try it 🙂
But now to the “short” story:
The new autistic you,
Dear reader, I’m Robin and as you probably expected, I have a form of autism, in my case it’s Asperger’s syndrome, I wrote this piece in a try to give an non-autistic person a little more insight into my world.
A institute over here in the Netherlands is the “Leo Kannerhuis” it is an authority on autism in our country, they have built a traveling project that makes it possible for non-autistic people to experience a little how it is to be autistic, primarily how (much) stimuli we got from “normal” situations. This project is called “hoofdkwartier” translated that would be Headquarters, this is a 3 meter high tube frame in the shape of a head, with an extensive audio-visual installation mounted into it. Based on many researches and knowledge from the specialists on autism, this a/v installation projects a realistic experience on how much stimulus an autistic person has to handle in a “normal” situation.
This installation/project works on the base of differently dosed/amplified presentation of the audio-visual stimuli, in such a way that they are received by an non-autistic person like they would by an autistic person and are impossible to filter away by the non-autistic person like he would do in the “normal” world.
(sadly is this project cancelled due to the high operating costs on 1-1-2012)
But when it still was traveling around the many mental institutions and conferences, many off the people (the non-autistic ones) I spoke/discussed/philosophised with on this short story, had visited the project and so could incorporate their findings into this piece.
After that I further explored/discussed/philosophised my thoughts with experts and laymen on the field of autism.
And with all the knowledge out of these interactions I constructed the following imaginary situation to give you some insight why we autistic people display some of our behaviours.
It good to remind you of the fact that the induced stimuli in the headquarter project where only of the audio-visual kind and the surroundings, taste, touch, smell and internal mental stimuli where left out, but these are just as important and burdening to me as the audio-visual ones are.
It is clear to me that I process physical stimuli badly, because to many other much to important stimuli are present to give those physical stimuli any room to be processed, but they are there and still burden my system just as much, only to drown before they reach the end into my conscience, where I could have registered them.
Right let’s go:
Tomorrow morning you wake up and “hooray” you have become autistic overnight and from now on the stimuli that you receive, the incapability to filter them , the incapability to make (the right) connections (between action and reaction) work just the way they work with me.
Greatly due to the fact that you do not know how long this situation will last, or better the surety that it will last for the rest of your life, It will drain you completely within 24 to 48 hours, so much that the only thing you will be able to do is to assume the foetus pose in a back corner of a room, silently rocking back and forth under a thick blanket. Probably supported by an arsenal of psycho-pharmaceutics and not in small dosages.
Sorry, this is not an exaggeration of the situation, it is based on well-founded discussions with people (therapists, shrinks, experts) who really know what they are talking about, on part of the autistic (world) experience as well as on the mental resilience and means of the non-autistic mind.
But there is hope, just like the squeaking door you no longer hear/register after some time, you will adapt to and arm yourself against these over stimulus.
We go on:
After a few months you, depending on your intelligence and willpower, possible be able to function a little better, because slowly but surely you kind off recognises between the overload of stimuli those stimuli that seem to be important, like severe pain when waiting too long to go to the toilet or eat, probably you will not yet be able to distinguish between those two but hey when your abdomen hurt that bad that it reaches you in the chaos, you go to the toilet and eat something so that the pain goes away.
Sometime later ( think months not days or weeks) you will have found some kind of rhythm in the madness that seem to be your life now, where mainly helped by external stimuli you can keep it up.
Think an alarm clock to get up, then a list of tasks to perform like: go to the toilet, wash your face – then your arms – then…., put clothes on: underwear first – then shirt – then…. , eat etc…
Because the over stimulation is still too much for you to handle, you perfectly capable without the help of that list to go to the toilet and forget the rest and simply go to bed at night again when the other alarm clock tells you to, without noticing any of the thing you forgot including eating.
But also stay on the toilet for 2 hours just because you don’t know how long you are on it already and no way for you to feel if you are finished. (these stimuli are still drowning in the rest of the chaos)
So by learning to use fixed patterns and rituals you are learning slowly but surely to handle life to the next step, as long as everything is on its fixed place, and it’s the right object, and everything in your surroundings keeps to the same rhythm every day, you can even speak of a real daily rhythm and filling: getting up, toilet, eat, (morning) day activity, eat, rest, (afternoon) day activity, eat, (evening) day activity, toilet, sleep.
But oh Mann, what if your clothes don’t lay in their place where they supposed to be or they are washed with a different detergent so you no longer recognises them as your clothing for the touch or smell they gave was the only useable marker for you to recognise them, you will still go in a fit and lose it all in pure desperation and panic. This will destabilise you such that you will not be able to function for the rest of that day or maybe even days, because your world is destroyed you cannot trust anything anymore.
What else will there be changed, what else will there be based on the wrong stimuli, panic plain and simple panic.
You are possibly using technology to help you to find and keep your rhythm, by using more than one alarm clock, or one device the supports more than one alarm and tone, so it tells you when to do what and for how long (just like I’m doing) but it is also possible that someone else does this for you like caregivers, parents.
Where you think of it now as degenerating and unacceptable, as “the new autistic you” you will need it and depending on your age accept it or even ask/demand for it.
(the juveniles with autism seems to have the same need to rebel against authority, so around that age it is possible that there will be some resistance against guidance, but there is no less need for it maybe even more need, but it maybe has to be given/presented in a different way)
Finally:
After a few years there can be a bit of a somewhat acceptable, semi self-reliant life, maybe with a minimum need for drugs.
Where it is mainly depending on you intelligence and personality what the level of functioning will be, where you a highly gifted and strong-willed person before you woke up that desperate day, than you maybe will be able to get close at my level of functioning and will be diagnosed with Asperger’s syndrome or High Functioning Autism (HFA).
But you will not fully reach it because of your previous live experience and the handicaps that it gives you now. Because you know what it is to be not autistic your able to reasoning the difference and this will pose extra frustration and burdening on you, why? Why is it so much harder to do that? Oh that non-autistic person can’t help it that he does me wrong because he experiences it so and so, short: “you know better”
But a born autistic person has an advantage over you for he has learned coping with the world for so many more years, but also never learned all the things that are hindering you now. He also was able to learn much more coping abilities at a young age when his brain was much more flexible.
Also did he never had a choice to want to reach a certain functioning level as you did, he was forced to do what he did just to survive. Where you are probably trying to reach some goal like it was in the days before, but this is wanting and not forced upon like with a born autistic person who has to life in an non-autistic world.
So you see, you actually will never be a thru autistic being, because you would be handicapped much more by your past, so even with the same IQ and personality as a born autistic being , you would not be able to function on the same level as him.
Robin.
Please feel free to comment and argue with me on the contents of this post for it helps me as well as it does yourself.
If you can convince me that I am wrong at some part of this post I will gladly rewrite it, but until now nobody who read it was able to 🙂