Interruption, a short story (on autism)

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Interruption,

Hi, as you will know by now I got a form of autism, Asperger’s syndrome to be exact.

What you might not know is that I spend the last several years in a therapeutic setting/environment, this because finally in mid. 2003 at the age of 32 I could no longer manage, living a “normal” life and I (horribly) broke down, when I was admitted it was clear I had some serious issues but nobody knew what exactly, because of my coping mechanisms it took them and me until late 2005 to figure out that I have autism.

Today I am living on my own again, with the help of some “personal or life” coaches specialised in people with an autistic disorder and the support from the therapeutic setting where I stayed all these years recuperating.

When talking to one of my coaches, she mentioned that she had a meeting later that day with parents of another (young) client who was only diagnosed recently,  she dreaded this meeting for again for the hundredth time she had to try to explain to parents, that their child wasn’t just displaying juvenile behaviour, but that it was far more complicated, that it is autistic behaviour that they see and that it will not go away, or that it wasn’t motivated from rebellion, just to pester them.

But that this client is suffering and tries to survive with the autism in an non-autistic world.

The experience of my coach is that, coming from her, it would likely be discarded by the parents in disbelieve. Although the client is saying that the coach is right and that she explains the things the client experiences and somehow (duh) doesn’t get across.

If only an autistic person could explain it to the parents, like I can explain the things I experience to my coaches, I seem to have my way with words.

(by the way: she wasn’t suggesting I would/could be that person, for I am not ready for these kind of things, not in a long shot and she knows that as well as I do)

And the things she needed to explain where the simple things like why an autistic person is so overstimulated in an “normal” situation, but that non-autistic people tend to play it down like “yes, that inconveniences/hinders me also, when someone does this or that” not understanding that an “inconvenience” an person with autism experience from a situation is completely different from what they experience.

Getting that across is almost impossible, when an (non-autistic) coach has to explain that to (non-autistic) parents , “who know their child” and are still struggling to get to grips with the “fact”, that their offspring is defective due to their fault (genes). And now that stranger, that is helping/coaching  their child only recently, is trying to tell them, that they don’t know their child and actually are hindering the child, their child, to grow and blossom, or just to functioning enough to have a little joy in life.

I responded to her that I would like to try, somewhere in the far future when I am functioning good enough, to do such a thing and help my coaches on this just trying to explain what it is to experience the world thru/with my brain, for I like to think I would be able to find the right words to reach some of the people that are involved with the life of an autistic person, like parents, siblings, partners.
But I am pretty sure that not now and not even in the near future I could manage that because I have enough troubles on my own trying to survive.

Only a few days later I had a meeting/evaluation at the therapeutic setting, halfway into the meeting someone (a manager) came into the “meeting” room annex manager office and said that he could not wait any longer for the meeting to finish so we should just continue while he got working at his own desk. He is up to date on my case so there were no issues or anything with him being there in the room, sometimes when wished for he will attend these evaluations.

Afterwards I managed to gather all my guts and told him that I experienced some inconvenience from the fact that someone interrupted  halfway in to a meeting, that is by the way is already hard work for me.
He reacted with something like” yes sorry about that I find it also very annoying, when someone disturbs me when I am in the middle of doing something, so I can fully relate to what you are saying, but I really had to answer these e-mails”.

At that moment or better several hours later when I processed that moment, it takes me somewhat longer to process things I experience, depending on how tired I am that will be seconds, minutes, hours to even days, I thought back at what my coach had said about explaining that a situation is experienced completely different by an autistic person and what high “cost” this person has to pay for it, so high that it is sometime disabling, compared to the annoyance a non-autistic person experience.

So I wrote in reaction to that, this short story, for my coaches to use in a future situation, but it seems also to me a good piece to post here, now I translated it to English to use on my website:

It is even shorter than the introduction 😉

Interruption,

Dear reader I want to take you to a situation that you probably have experienced more than once before, you are in a meeting or busy working in an enclosed space (let’s make it a meeting).

The things that will be discussed here are (very) important, like a mortgage, or a meeting with a physician. It is paramount that you take in all the information and correctly that is, for you will be held accountable for it, at a later point in time, if you don’t.

Now without any warning the door opens, a random person comes in, holds and says “Oh, Sorry I didn’t know this room was occupied”, closes the door and you can go on, with some hesitation, with the meeting.

Now I’m going to ask something of you that I myself don’t understand, but I was informed that this is something you can. The feeling that you would have experienced directly after the interruption I described and the mental energy it takes you to get back into the meeting, so to refocus on the subject, try to imaging it and try to remember it.

So not as much the situation but more the feeling, frustration, anger, etc. and the energy this all would take.

Now let’s go back to the same situation, but now the door slams open and a complete junior high marching band enters, two of the trumpet blowers positioning themselves on either of you and try to outperform the other like their life’s depends on it, this all takes a considerable time and depending on how tired you where before the meeting and how much the meeting has taken out of you already, but it lasts at least seconds, possible minutes. Where it seems despite you trying to send them away they just keep on playing. Also the other person(s) in the meeting look like they only have seen the door opening and closing, they do not register the junior high school marching band and their ace trumpet players, so they continue with the meeting and expecting you to do the same, despite of the totally overwhelming input/stimulus, and able to getting all the information processed,
After some time the junior high school marching bend and their genius trumpet players leave the room, not disappearing but playing on, just outside the room, so you are completely right to expect them to enter again at any time, only after a while they are slowly moving away from the door, but somehow you will keep hearing them play for the rest of the meeting, if only to remind you off what has happened.

Now again I’m asking you to do that trick I don’t understand again, try to imaging the feeling, the frustration, the anger, but also the perplexity and frustration about the other(s) that seemingly haven’t  experienced  the situation at all, but still expect you to keep up to the things that were discussed in this meeting, despite off you missing parts of the meeting or not and they will keep you accountable, also try to  imaging the energy it will have taken to try as good as possible to keep focused on what was said.

So again try to forget the described situation just remember the feelings and energy it took  to get thru a meeting like that.

Did an interruption costs you, probably experienced it as in the first situation, the same as it costs me with autism, who probably experienced it more like the second  situation ?

Not that I really see/hear a junior high school marching band and their brilliant copper section in a situation like this, I am only trying to convey, the sheer amount of stimulus and huge amount of energy it takes, in a way you can imaging it. It’s only about the feelings that are experienced and the effort that it takes.

I only hope that someday you think of this story, when a person with autism has the guts to point it out to you that he/she experienced “some” inconvenience from an interruption during a meeting and you are about to say to him/her “that it bothered you in the same way” and think “that is nothing autistic, I got that too, don’t I” ?

And NO this piece is not meant to minimalize your experience of the world, that would make me as inconsiderable as those who do that to my world, I only hoping to give “a little” more insight and possible “a little” more consideration to the effort we are putting into it, trying to keep up with you.

Robin.