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Aspergers, the subtle disability

I admit it, I was going to title this one the sneaky disability, rather than subtle, but I didn't want people thinking aspies were sneaks. Some of us probably are sneaks, I don't suppose there is any reason to suppose we are all saintly little creatures who never put a foot wrong. But that's not quite what I mean.


In an earlier post, I talk about aspergers being the part-time disability, because it allows us so much freedom, then reins us right back in and we're unable to behave as other people would like. Now, I want to look at how it sneaks in, right under our noses, making life difficult even when you don't realise it.

I'm sure I'm not the only one who has made bad decisions because of aspergers. In fact, I could very probably say, we have all made bad decisions because of aspergers. It's part of the scenery. Decision-making or pretending to decide and then rushing in, it's what makes aspergers such a creative way to live. Even those aspies who prefer to hole up at home, in the lovely light of the computer screen, will have been prone to this decision-making process.

You see, aspergers lets us think it belongs to us, as something we can see and almost touch. We know it's there, we can feel it looking from the edge of the door. It's all the way in the room with us when we open our big mouths and land ourselves in it again. Aspergers can be like some large pet, following us around, always ready to make it obvious who it belongs to when trouble ensues.

The notion of aspergers belonging to us is reinforced by those times, as in the part-time disability post, when we can pass for normal. Those times in life when you feel you can cope with things, you can act like a grown up for a change and none of your throught processes are dangling off the aspie cliff.

I guess I can sum it up by saying that while we may always identify ourselves as aspies, the aspergers itself can feel sporadic. One day we may stagger through our routines with the weight of the world on our shoulders; another day we can climb every mountain etc.

So, it's tempting to view aspergers as an on-off disability, one that allows us to get the job but not keep it, for instance. And this is where we have the big sillies, people, because none of that is true.

It's true to say we are always aspies. Sometimes, we are aspies who can manage anything and everything, but are you sure that isn't just because you had enough sleep or ate too much sugar or are going through a manic phase when the whole world can be yours?

Sometimes we can speak our mind and explain ourselves without aspergers getting in the way and tripping us up. It can feel like a triumph - we have beaten aspergers or managed to speak while it was looking the other way. Hmm. It's a nice thought but not true either. We have done these things and yay to us! But it's more likely the wind inside the mind was already blowing that way and gave us the extra push towards full expression.

I can corroborate this one as I was always a meek aspie, rarely speaking my mind, unless my mind spoke for me. As I've got older and gained more understanding of myself and the world in general, I have become more likely to speak my mind and not be meek. These days, if I keep my mouth shut, it's usually because I have decided to and not because I dare not speak. Another yay.

So, if we recognise that aspergers is here all the time, that we just react differently sometimes, due to many variables, what do I mean about it being a sneaky disability? Sorry, a subtle disability (sorry, aspergers, I love ya really).

I'm talking about those times when you acted, reacted, behaved or misbehaved in a way totally unrelated to aspergers. The times when you were the aspie but aspergers itself had been pushed to the background and you found yourself able to cope without mishap.

I mean those times when you have clarity of thought and speech and deed, when you could run the country if they let you, or at least hold down a steady job. Not the times when you feel manic, or so depressed everything seems clear because you've stripped all the goodness away. Those times when it all seems stable and you just happen to be able to do it.

You know what, I've had many times like that and I've lived normally for a little while; I've made decisions and accomplished things and, I admit it, wondered if this was what it was like to be normal.

Then, later, sometimes years later, I'll look back and realise aspergers was there all along; I just couldn't see it.

I'll give you an example. When I needed to go back to work the first time, I had reached the stage of being absolutely desperate for money. I was also passing through a very creative phase and had started a new book. It was going extremely well, but however good it was, I needed money.

At the same time as applying for jobs, I contacted agents about the book before it was finished. When I got the job offer, I also had a couple of positive responses about the book, one of which wanted to read the whole thing. But I didn't have the whole thing! Instead of replying and telling them this, I ignored the letter, feeling if they was positive, then later, once the book was finished, other people would be positive too. I took the full-time job and the book was never finished.

At the time, readers, I was well aware that I was choosing the job over the book - or over the writing as a whole. I felt I was making a sensible decision, given my finances and the fact I was a single mother. It was the only decision, I needed the money.

I had the idea that the writing would always be there, ready to be picked up when I was coping with my new work. It would still happen, everything would be fine. I just needed to get some money now and lift things up.

The trouble is, aspies sometimes can't cope with going to the corner shop, so I don't know how many of us could cope with a stressful full-time job as well as trying to write and run a household.

Now, I'm not saying I should have made a different decision. I still see that I had little choice. But looking back I still regret that book not being written. It had the glimmer about it, the magic of something which was able to write itself.

What I should have done was write back to the agent and explain. She may have lost interest, but who knows? That's one thing I could have done differently. Another is, I could have looked at part-time work. I was fixed on full-time because of needing the money. I also had the idea that I should return to full-time work because that's what real and proper people do in a normal life. Going part-time was always half measures, right? Real people do full-time and have mortgages and need to buy suits and stuff.

Yes, there are things that I could have done differently but I was convinced I was making rational, grown up decisions. I didn't know about aspergers then, so I couldn't take it into account - but I did know I found things hard to cope with. That couldn't matter though. Lots of people find life hard, we just have to man up and do it anyway.

So, where was the aspergers in this? Very definitely in my head-in-the-sand reaction to the agent asking for the full book. I even recognised that as 'cowardly' at the time (I was very fond of calling myself a coward back then).

Putting that aside, the rest was an adult decision-making process, with no bearing on aspergers, don't you think? I was facing my responsibilities and doing what needed to be done for the good of me and my family.

Except, what I was actually doing was ignoring any downsides and pushing myself to become the person I needed to be. I was shaping myself to fit, like so many aspies do. I was sure if I tried hard enough, I could be this full-time worker who coped with normal things.

As I needed to be that person, I made decisions based on what that type of person could do. I pretended to be her in the interviews, I tried to pretend to be her in the job itself. I bought the clothes and had my hair done. I re-scheduled our lives around it and wept tears over not being able to collect my children from school.

I slowly drizzled away, not coping with the imposed personality or lifestyle. It didn't work. With what I had chosen, it was never going to work, I just didn't realise it then.

The aspergers was always there, informing my decisions like background music lends atmosphere to a film. Even though I couldn't see it then or take account of it, I was behaving as a true aspie - creating a world to fit what I thought I needed or wanted. Any decisions made within this premise are bound to be faulty, however impeccable they seem, because at the very heart of it, we're not being true to ourselves.

Even now, when I can look aspergers in the face, I still get caught out on a regular basis. I can think I'm taking account of it, but I end up making decisions based on what I think should be instead of what is.

This is where aspergers is sneaky, you see. It's a very good mimic and can look at the world of other people and see where we are lacking. We can see what we're meant to do, compared to everyone else. If we accept we can't do it, then that's fine for a while, until we move onto a different scenario and decide we can do that instead.

The problem is, the different scenario often isn't very different at all. A good analogy would be all the jobs we work through. This job will be better than the last one because the hours are less. This one will be better because it's easier. I was so bored at the last one, this one will be better because it's more challenging.

Each time we swap the job, the aspergers is in full control, even though we've made the decisions based on good reasons. What we are doing is moving the scenery to suit our view that we should be doing this instead of that. As long as the scenery keeps changing then the situation is different and we can trust our decisions are objective.

Unfortunately, it just doesn't work that way. What we end up doing is moving our lives around while forgetting the one thing that doesn't change - ourselves. If you are the main character in the play, it really doesn't matter what the scenery looks like or how the lines change: you will be that character in the end and your actions will eventually match your personality.

And this is where I have to drop the big drama bomb. Aspergers is not our pet, our possession or even our disability. It is part of us. Not like a dart that has been fired into your behind, or a needle pushed under the skin to administer a steady dose of aspie-ness. Not like carrying a baby or having an ingrowing toenail. And not like having a split personality (though it often feels that way).

The shocker is, that aspergers is woven into the very fabric of our being, so that you cannot tell where it ends and where we begin. That's because aspergers is a name used to describe a set of behaviours that have things in common. It's a short cut. The very essence of being on the spectrum, of having a 'rainbow disability', is that we are all different.

Don't feel bad that aspergers is at the very heart of you, because all I'm doing is telling you that your aspie-ness is a part of you, not some alien, unfriendly thing. You are you and no one else will be an aspie in the same way. We can speak a lot of the same languages and relate many misadventures, but none of us is the same.

Aspergers is the subtle disability because it is so deeply bound to our real selves that we could never tease it free - and nor should we.

Everything we do and say is linked to being an aspie; it's a fact of life. I'm not saying don't trust yourself or always shy away from decisions. Better to go on in the best way you can and, when it comes to making a decision, view aspergers as a dear friend who is always with you. You're in this together so, as you move through life, remember to turn to aspergers and say, 'What do you think? Shall we?'

The funny thing about this subtle, sneaky disability is that it only wants to be heard and taken into account. Once you do that, the sneakiness and subtlety fall away and aspergers brightens, full of relief and hope for the future. If you work together with your aspergers, you can move mountains after all. And best of all, you can do it in the right way for you.

Amanda


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