Aspergers, the part-time disability

Before I start receiving hate mail, this is not my view! Obviously, aspergers can't be switched on and off, or even turn itself on and off. Sometimes it seems to, especially when stress levels rise, but that's not what I mean by this post.

I'm talking about when people close to you, whether family, friends, best beloveds or co-workers, who know about your aspergers, give you credence for it one day and expect you to behave normally the next. Those occasions when you're as aspie as you were the day before, but for whatever reason, they expect you not to behave like you are, because it's not convenient.


This is one of the major downsides of having a hidden disability, which often occurs in people who can function at a high level a lot of the time. You're already looking okay because you can manage all kinds of everyday tasks. Those of who us who are adults have had to incorporate our daily lives into our aspie-ness, making one support the other as much as possible.

We can often come across well, listening to people, talking to them and doing what is needed. When we're having a high-aspie day, the people close to us can tell and, depending on the relationship, make allowances, try to help, ignore it or carry on as usual.

It starts to go wrong when the person with you decides they need the 'other' you, the one who can manage things and do stuff and be an all-round Mr or Ms Normal. This other you doesn't really exist, it's just the front you put on for most of your life. It helps you get through and makes things seem better. It drops on the bad days and cracks under pressure even on the good ones.

So a scenario may be when the other person needs you to do something for them. Let's say they're the ones needing support, or they are having a bad day and don't have time to mollycoddle you. Or it just isn't important in the grand scheme of things that you're an aspie as x, y and z need to get done.

It's at times like this when someone who has known for years that you have aspergers, can turn round and expect you to do everything as if you are a normally wired, fully-functioning, non-eccentric and definitely non-aspie human bean. On that day they need you to be like everyone else and you can almost guarantee that'll be a day when you're feeling like an unsoaked bean, rather than a baked one with tomato sauce.

Of course, we don't help ourselves, do we? Rather than being permanently awkward and aspie, we do have good days when we can do loads of stuff. Often, it should be said, the stuff we do on these good days is not what other people would see as important, but we still manage it. So why can't we step up and be like that when the other person needs us? In their mind, they've stepped up for us many times, can't we return the favour?

It doesn't come across like that, though. Just because we manage well a lot of the time, or seem to, doesn't mean this time, when you need help with x, y and z, we'll be able to provide it. Worse, after years of conditioning that things must be done a certain way and we have to be a certain kind of person, we'll go ahead and try to do what is asked of us, regardless of how we feel. It's the knee-jerk reaction of the adult aspie who has struggled to fit in their whole lives.

And worse than this, suppose you're particularly good at something and that's one area where people can turn to you for help? Great, a confidence booster and a way to repay them for putting up with your Fringe obsession or your latest humdinger of a conversation-stopper. What if your aspie-meter rises at the time they need help with this area and you suddenly find you can't do it? Lead balloon, anyone?


In my case, I've always enjoyed filling in forms - sad but true. Then I had to fill in some forms this summer and I don't know whether it's the extra stress I've had this year, or a decrease in sleep and caffeine or what, but suddenly the forms made much less sense than before. I had to fill them in, they were properly official and other people were relying on me.

I looked and studied them, I worked through them. I wrote my answers separately so I wouldn't get them wrong. I looked up online guides and peered at the help pages. I managed to struggle through most of the form but was still worried it was wrong or that I'd missed something. Even then, there were a couple of questions I just couldn't do.

I must admit to getting upset over them. It was all down to me, I was the only one who could fill them in. I had all the information I thought they needed, I just couldn't make it fit the form. In desperation, I went and had a soak in the bath.

After a long bath and time to calm down, I decided to put aside the panic and look again, calmly and methodically, at the form. There, at the top of it, now sticking out for all to see, was a question I had missed which made sense of the ones I couldn't work out. The answer had been there all along, I just wasn't able to see it.

I completed the form and sent it off and all was well - that time. It shook me, though. This was a task I would have breezed through a year or so ago, yet this time I could barely manage the normal questions. It was like I had grit in the gears and they couldn't move smoothly, so each stage I completed was a separate thing from the rest of the form and I couldn't keep my concentration going long enough to succeed all in one go.

It's at times like this you worry that aspergers matures like old cheese and that by the time I hit fifty, I'll be running naked through Tesco, having finally dumped all my inhibitions along with my common sense.

And amongst all this drama and the belief that I'm now on a downhill slope towards complete eccentricity, is the little voice of people who still want that form, did you do the form? it doesn't usually take this long...

How can you tell people your brain decided forms were no-go? When people want something from you and you say you're having a bad day, there is a blank reaction, because they expected you to manage the thing they want done. To them, it sounds like you're being wishy-washy. After all, it's not as if they can do it any better - you always do it!

So, I got the form done and didn't go into the trouble I'd had with it. I just said it was quite difficult and I'd had a struggle to finish it. I didn't mention lying in the bath, wondering who could help me or if it would ever get done.

I'm cutting myself a break, though. As I've said, it's been a heck of a year, so it's not surprising that, alongside normal stresses, there might be a deeper, underlying stress, slumbering just under the surface, waiting for extra responsibilities to prod it awake. I'm going to write off the form fiasco as a fluke, something brought on by lots of other things. I'll try not to carry it with me when I need to do another.

As for people expecting the part-time aspie, I'm also cutting myself a break there. If I can come out on here, on Facebook and to the world at large, I can certainly turn round to the person expecting Ms Normal and remind them that I'm not her! If they want Ms Normal, they need to look elsewhere. Here is only Ms Cheese, maturing into goodness knows what.

(Please also see this related post, Aspergers, the subtle disability)

Amanda



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