Aspergers and the highs and lows

Katherine Rowlands

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Its a difficult thing to figure out, where you stand in the world as a person, let alone a person with difficulties that might stick out and influence, or limit, the outside world in its opinions of you.

Obviously I have a hard time with the idea of being labelled, but there are also instances in which having a formal diagnosis can be helpful academically or socially.

For an example, at my University I am allowed to have extra time on tests, a private exam room, and I receive disability grants from the government for my schooling. These are all things I need, as without these accommodations I would find University an even more stressful environment than I do now. I would not have access to these things if I did not have some kind of formal assessment. Part of these allowances are due to my being a hearing impaired music student, but many of them are not. I have also been able to find an adviser who specializes in people with Autism and Autism-like characteristics.

I don’t think a diagnosis is something to fight or be ashamed of, instead, I think of it as a way to say very easily ‘Hey, a doctor is backing me up in making sure I get these things…’

I can spend all day telling a disability assistance worker that ‘I’m Katherine, I have special needs, but I don’t want to be formally labelled, I’m a unique individual…blah blah blah’ and I will get nowhere. But one signed letter from a doctor with the word ‘Aspergers’ on it, and I’m in. Its that easy.

On the other hand, its obviously not fair or right that anyone should have to be put in a box in order to get the things they need to learn or function.

I look fairly normal, and I act fairly normal (when I have to), so there are times when I have encountered blatant denial of my needs.

Sometimes, when certain people find out that I require special help, they treat me as though I am lying, or stupid. I have encountered disbelief when I have stated that I have certain reactions to nitrates in food, or that the seams on my trousers bother me. I have been told that I am over-reacting. There are times when I feel pain all over my body, for no particular reason, and no one will believe me.

My hearing problem was miss-diagnosed two times because no one would listen when I told them I had pressure in my ear. I was told ‘there is no fluid, so there is no pressure, you are imagining things’

Again and again, I have heard that line in different forms ‘You are imagining things’ or ‘you are delusional’ or ‘riiiiiiiight…’

Getting medical help sometimes feels impossible, and there are times when I have to take my hearing aid off and shove it in someone’s face before they will believe that I have any difficulties in my life.

(My hearing problem was finally diagnosed as being a minor loss of hearing aggravated by a hypersensitivity of the brain, I can hear, but I have a very loud buzzing sound a lot of the time that I can’t hear over, due to my brain picking up on the mistakes my bad ear is making. Its more complicated then that, but you can see that my hearing problem is a product of both physical damage to my body – the hearing loss – and my ‘Aspergers’ – the hypersensitivity. My ear still causes me a lot of physical pain, and of course, ample emotional discomfort.)

cI think that my life is just a long-winded round in an Iron Maiden, where I am so boxed in and confined by painful thoughts, feelings and sensations that I will never escape.

I also have high days sometimes too, when I feel a huge amount of joy because I am me, and revel in the way I see the world. I see everything as positive on these days, or at least, everything seems to have a positive spin. I am rarely in the middle, and my mood is a constantly changing thing. I seem to stay low much longer than high, and sometimes, even at my most depressed, I’m relieved that at least, for a little while, I can stay in one place.

But whatever my mood, the only way I have found to work through it is to take it one moment at a time. It can be hard to shut my brain off, I usually can’t, and if I am told one more time, by one more person, to try meditation, I’m going to scream.

Life just sucks sometimes, but things are getting better. Painstakingly I am learning to be more aware of myself and my moods, I know that when I’m low, life probably just seems like there is nothing good in it, as opposed to there actually being nothing good in it. I know that if I have an impulse to do this, or that, that it would be a good idea to think it through first, and I have figured out that just because I think I’m doing everything wrong, and that everyone hates me, that’s probably not entirely true.

I’m not perfect at it, sometimes I lose myself entirely and it takes weeks or more to pull myself out of a funk. Sometimes knowing that it is just a funk is not enough to make me feel better. I know the world isn’t only full of sadness, but I can’t find any evidence of that at the time.

These self-help methods did not come from doctors, or counsellors. They came from me seeking my own answers in my own time and in my own way. It’s probably a bad thing, but my experiences of seeking help from the medical community have left me very frightened of it, and I avoid it whenever I can. This is yet another fear I will have to work to overcome.

I guess that sometimes life is like being stuck inside an Iron Maiden, but also, every once in a while, some kind jailer in the back of my brain unlocks my confines and lets me out for a while.

Courtesy of Aspergers on the Outside