As most of you will know, I have not only Asperger's Syndrome, but also Chronic Fatigue Syndrome. I also, incidentally, have arthritic knees and a temporary disability in the form of a still-mending broken ankle. So in most people’s eyes, I would certainly slot into the ‘disabled’ category. Yet I’ve always felt uncomfortable describing myself as disabled, most especially in regards to my Asperger’s Syndrome, but even when considering my other, physical, impairments.
I’ve been thinking about all this for a long time, and I’ve finally realised why I feel that discomfort. The Concise Oxford Dictionary definition of ‘disability’ is ‘thing or lack that prevents one from doing something… physical incapacity caused by injury or disease’. But I don’t see myself as totally prevented from doing certain things. Rather, I see myself as extremely challenged in doing them. This isn’t being all PC, it’s simply that I feel ‘challenged’ describes way better how my life works.
I am challenged, in that many, many things are difficult for me, some of which I don’t care about and hence would never bother attempting anyway, some I’ve given up only reluctantly, and others I can do only with assistance, or in small doses, or with extreme care.
So I’ve decided to try and list (yes, I know, another list!) the ways in which I am challenged, ways which aren’t likely to change anytime soon.
I am Physically Challenged. It is true that many physical activities which others take for granted present significant challenges for me. CFS imposes limits, as does arthritis, how severe depends on how bad my conditions are on any given day. (The ankle, of course, also imposes its own set of limitations.) I can’t work full-time, lift a lot of heavy loads, stand for a long time or walk long distances, and can no longer run or dance or even walk fast, even on good days. Plus, I have to do far less of anything in any given day than others would, or I risk running out of ‘spoons’. Even reading or using the computer can be tiring, for instance, if I do them for too long. I am constantly calculating my spoons, to see what else I can manage that day. Some days, that’s not much at all. Other days are better, but it’s never up to the same level of activity as others can do.
I am Sensory Challenged. I’m challenged, daily, to cope with the sensory barrage of everyday life. I can largely avoid or minimise it in my own home, and to some extent outside it too, eg going to the supermarket when it’s not so busy. But not always, even at home. And sometimes it’s totally overwhelming, and I just have to escape, withdraw, and do my best to avoid a meltdown. It’s a perpetual struggle, and one I know I’ll have to deal with for the rest of my life. And one which others often underestimate or don’t take into account, adding to the struggle.
This challenge is due to not only my AS, but also my CFS. When I acquired the latter, it made already acute sensitivities far worse, especially around glaring lights, certain types of noise and strong chemicals. My intolerance of the latter is especially acute, and means I simply don’t use a lot of fancy cleaning products in my home, as well as strong-smelling toiletries and the like. It’s an aggravation I can avoid, so I do so.
I am Executive Functioning Challenged. All my life, I’ve had to struggle just to get my daily life in order – getting myself to school or work, keeping my house clean and tidy, or just following reasonable routines that keep my life from descending into absolute chaos. When I was a child, my parents, especially my mother, structured things for me a lot, though I do remember she found it frustrating that I was such a ‘daydreamer’, as I was called then.
As an adult, I had to work hard for many, many years, before I established ways of living that suited me. And even then, my routines were (and are) easily upset. Sometimes people have implied I’m too fussy or rigid about them, but I know what happens if I’m not, I know how easily things can fall apart. I’m a bit more flexible now than I used to be, but only within certain limits. Because even now, these routines are something I have to deliberately push myself into completing. Every. Single. Day. And still, I often fail to achieve order. It’s an ongoing battle.
I am Anxiety Challenged. For most of my life, from adolescence on, I would probably have met the criteria for some kinds of anxiety disorder. Trying to avert or cope with sensory barrages, social situations and daily functioning problems, the whole blasted confusing torrent of modern life, for me meant living in a constant state of hyper-anxiety.
I’m not talking here about a little nervousness, which is what most people (NTs) mean when they say ‘anxiety’. No, I mean the whole sweating, shaking, gasping, heart-pounding, quivering, whimpering, gut-churning, fight-or-flight, on-the-verge-of-freaking-meltdown total mess kind of anxiety. Fear, really. Fear ruled my life. What did so-and-so mean, when they said that? Why did Person X do Y? Had I unwittingly offended them somehow? Why did the things I found so overwhelming not seem to bother others? How could I avoid these things, especially when others didn’t seem to care about or even notice them? Why was I so wretchedly different to others? And on and on, winding myself into tighter and tighter coils.
These days, not only do I know the answer is Asperger's, but I’ve given up on that kind of excessive worrying. You can only exist in that hyper state for so long, and then either it implodes, or you do. In many ways, I simply don’t care what the vast majority of people think anymore. But now and again, anxiety will still return to plague me, usually triggered by some social challenge, though other things can trigger it as well. I have to do A LOT of self-talk, to unwind and calm down. It’s best, I’ve found, to avoid anything likely to set me off.
I am Socially Challenged. Like most aspies, I have absolutely no inborn social instincts. Every single social skill I possess is consciously learnt and consciously practised, and slow, clumsy and incomplete as a result. And this is in spite of deliberately setting out to learn them, to observe and imitate others, from my early adult years on. Decades of effort, however, have not really yielded all that much. I can ‘pass’ for a little while, hold a conversation for a little while, but any interaction more than the superficial, or sometimes even that, will have others looking at me sideways, giving me a puzzled or curious or “Why-are-you-so-strange” look.
So I find it best to not put too much stress on myself in the social arena, it tends to not only tip me into anxiety or overload, but be a Conspicuous Fail anyway. I stick to the people and interactions I feel are ‘safe’, or as much so as possible. Why take on challenges I don’t have to? And which I’ll never succeed at anyway?
I am Relationship Challenged. Relationships aren’t easy for anyone I think, whether NT or aspie/autie, yet this is an area in which I feel myself particularly challenged. Even many other aspies seem to handle relationships better than I can. Moreover, I’ve realised it’s not actually necessary to be in one, to be happy. In fact I function heaps better alone than I do in a relationship - I’m much happier, calmer and way, way less stressed. And so I’ve decided it’s simply a challenge too far.
Think of it this way – many people have climbed Mt Everest. But they typically do it with suitable training, experience, fitness levels, oxygen and equipment, and a big support team. Whereas for me… being in a relationship is like I decided to just take a stroll up the mountain in jeans and a t-shirt, without any equipment, support, training and so on. I’m that ill-equipped, that ill-suited, to the whole venture. And I never really got any better at it either, despite repeated attempts. Every time, I was just as raw, just as unprepared, just as inadequately equipped for the reality of it.
And so of course my relationships failed, spectacularly. Horribly. Repeatedly. And when they did, the biggest and most frequent emotion I felt was …relief. The kind of Oh-Thank-God-That’s-Over kind of relief you feel when you’ve attempted something you instinctively know is way, way beyond you, but which you feel compelled to try anyway, because ‘everybody else’ is doing it. So I made the decision some years ago not to make further attempts at relationships. I just don’t have the right emotional equipment, whatever that is, and have more than enough other stuff to deal with anyway.
So there you go. These are my challenges, most but not all the result of my Asperger's. This is my life. This is how I am challenged. How do you define yourself?