"Shall I Compare Thee To A ... Vampire?"

Seriously. I am now, apparently, closely related to the undead. Mind you this could explain my obsession with ‘Buffy The Vampire Slayer’ and a general inclination towards things dark and vampiric. I particularly liked the character Spike, and especially his humour – though his appearance was nothing to sneeze at either! (No, I’m not sure myself exactly what that expression means – in fact, when you look at it literally, it’s positively meaningless!) Let’s face it, when you’re one of the undead, neither wholly one thing nor another, you’ve got to have a highly developed sense of humour – to go with the other highly developed senses.

It could also explain my disinclination for going outside during the day; an aversion to sunlight, which I used to have to an extreme degree when I was a child; and what used to be an unhealthily pallid complexion, which made me look as if I was terminally ill. (Now, thankfully, I just look pale and interesting!)

And then, of course, there’s the fact that I’ve never been much of a one for showing spontaneous displays of emotion: “as animated as a dead dog” is a blunt but often apt description of my general demeanour. As I now understand it this is not due to me being some kind of emotionally crippled automaton, despite what some people might believe. It is, in fact, yet another of those “quirks” of being autistic – my processing speed for everything is slower than that of a non-autistic, and my system just can’t deal with more than one thing at a time.

And when it comes to feelings, which never seem to arrive singly but rather in gangs (which leave me feeling as if I’ve been mugged!), you’d best multiply the average person’s speed by a hundred to calculate how slow I am, especially when my mind gets involved in the process of trying to work out what I’m experiencing. It’s like looking for a snowflake in the Arctic!

Basically everything I experience is out of synch: so whatever might occur today to induce an emotional response will not come to the surface until some time later - and later can mean anything from a few days up to a few years! And then, when it does hit me, I end up running round in my mind like a blue-arsed fly trying to figure out why I’m feeling so emotional when there’s been absolutely nothing going on to provoke such a reaction. Is it any wonder I would spend a large proportion of my time feeling wiped out by obsessively hunting for the reason, not to mention from the unnamed emotion itself. And the amount of times I put it down to PMS – which necessitated it being re-named to include not only Pre but also Post in the title!

But when I do experience feelings then the range and depth is staggeringly... limited! At least that’s how it seems: I can never find the right words to describe my emotional state, and they often all just appear to merge into one (the emotions not the words, though sometimes this can apply to both!). Apparently my default setting veers between worry and anxiety, manic enthusiasm, or gloom and despondency. I’m either at one extreme or the other, and I only hit the middle for a nanosecond as I go skidding by on my way either up or down. Who needs drugs when you’ve got an in-built facility for altering your own state of mind?!

As to the allusion to being one of the undead, it occurred whilst I was endeavouring to do the impossible, yet again, in trying to explain my Asperger’s to someone. You’d think I would have learned by now that it’s a totally futile waste of time and energy to keep on attempting to communicate to people what is the very essence of being autistic – my inability to communicate with people!! How ludicrous is that? Is it any wonder that non-autistics get confused by me as I proceed to talk in a coherent manner, and pronounce myself unable to express myself?!

And therein lies the problem: I can speak English. Depressingly, in fact, I can speak it very well. Unfortunately, as a means for conveying what I mean it’s a total bloody washout: I might just as well be speaking Martian, though I’m sure there’d still be some well-intentioned neurotypical insisting that they thought they knew what I meant, and that they felt exactly the same: “After all, we live in the same solar system, so we’re all basically the same under the skin, aren’t we?”!

Blundering “once more unto the breach” (more Shakespeare!), I was endeavouring to explain how I pick up other peoples’ feelings (not to be confused with feeling empathy, which I don’t do) – like animals, when they sense danger or can tell when someone is afraid of them, for example. Instinct, or sixth sense. The problem is when I don’t know that that’s what it is, and I find myself walking around experiencing a whole gamut of emotions which I can’t source or name, and that don’t belong to me. Inevitably I end up obsessing and analysing myself into a hole as I mistakenly take ownership of this seething mass of energy, and those to whom these rampantly raging and rampaging emotions belong walk away free, having discharged their shit out into the universe for me to step in. It’s one of the things I hate about neuro-typicals – they have no sense of boundaries!

During the course of the conversation, having mentioned how I’d realised that the fear which I kept feeling around one of my neighbour’s was not mine but his, the person to whom I was talking offered me a helpful suggestion. He said that whenever I found myself “feeding off” other peoples’ negative feelings I should just think about how happy he, his wife, and other people are.

And, basically, that was it. Oh, and I should listen to some Elvis Presley! Of course I simply stood there dumbfounded whilst this astonishing piece of wisdom embedded itself in my mind, ready for me to unearth and analyse later on. I also smiled. I’ve found it’s often the only recourse I have when engaging with members of the alternate human race.

I really despair sometimes at having ever bothered learning to speak, and especially at having taken such an interest in English grammar, being concerned to get it exactly right so that people don’t misunderstand what I say or mean. What is the point of grammar when, as far as I can see, the majority of the population disregard it completely, and just make things up willy-nilly as they go along? If you mention grammar to most people here in Yorkshire they assume you’re talking about a little old lady in a rocking chair!

Just to clarify: I don’t pick up feelings through my mind, so it’s a bit bloody pointless trying to change what are not my emotions anyway by changing my thoughts! My thoughts are not the problem, in this case – it’s the fact that I don’t seem to have a deflector shield for free-floating negative energy. I am a fluff magnet!! The part my mind has to play in the whole deal is in believing that it all belongs to me, and then driving me wappy trying to work out what and why and when, and on and on, ad infinitum. And of course I never find the end because there’s actually no beginning – it’s all come from outside of me, and it’s none of my bloody business!

I think it might be preferable to be a vampire sometimes: at least they get to choose whose blood they’ll suck, and they can always spit it out! I’m not able to choose whose energy I suck up, and it’s a bit bloody (ha ha ha, no pun intended) difficult to spit out what you can’t see!!

Lost In Translation

Have you noticed how no matter how hard you try to explain autism to non-autistics, and the differences between us and them, they insist on relating everything back to themselves, and saying infuriating things like: “I know what you mean”, and “Everybody does that”, and the ultimate in minimisation, “We all have our little quirks.” Quirks? QUIRKS?!!! You call not being able to understand what people are talking about, on account of being so literal-minded, a bloody quirk? And how “quirky” is it not being able to read body language, facial expressions, and work out tones of voice? And, I have to say, having no common sense (and I mean none whatsoever, not just a slight lapse every now and again that’s only related to some areas of life, or a temporary blip due to tiredness or some such thing) has to be the quirk of all quirks! Do you know I’m forty-three years old and I only just found out where my hips are? Seriously: I’ve been measuring the wrong bit for years, and thinking I’ve got very narrow hips!

Just watch their faces crease into a smile when you tell them that (about having no common sense, I mean, not that you’ve got narrow hips!), and then change to a look of what I’m assuming is perplexity ‘cos they can’t quite get their heads around the idea that what they’re looking at is a sense-free zone! Let them try relating to that! But I guarantee they will, in some way or another – chauvinistic men will assume that it’s down to me being female, and women will decide I’m just exaggerating, or that it’s ‘cos I’m in need of nurturing to enable me to grow up and out of it. How, may I ask, do you grow out of being common-sense free? It’s only now, as a consequence of finding out that I am autistic, and admitting to not knowing a great deal about life, that I’m finally beginning to learn about all those things that other people just pick up along their journey through life, and take for granted that we all do the same.

Well welcome to the confusing world of the autistic! It only took me about thirty-four years to find out that you actually have to touch your genital area in order to wash it, either with a flannel or a soapy hand (your own, preferably, unless you’ve got someone with you and you’re multi-tasking – not a thing I’m able to do!) I thought that just sitting in the water would clean it, but apparently not ‘cos there are those hidden bits that have to be prised open by hand! (I am, of course, talking about women’s bits here: I have no idea about male genital anatomy, so please don’t try prising anything open unless you know what you’re doing, or have had the advice of someone who knows what they’re talking about!) Oh, and I also had a ‘thing’ about not liking touching that part of me, which made me very squeamish about the whole idea.

And, I hasten to add, I had to be told by someone (my non-autistic best friend, from whom I find out everything, and without whom I'd be totally lost): I didn't have a sudden, spontaneous attack of common sense, like being struck by lightning - a "Eureka" moment, just in case anyone out there is ready to point out that here's a sign that one day the wiring in my brain might straighten itself out - in short, I might get 'better'!

The problem, as I see it, is not that they don’t understand autism, but rather that they think that they do, especially once it’s been explained to them. If they could just accept that they don’t understand it, and stop trying to relate it to their own experience, we might actually find a way to communicate better. It’s how my best friend and I do it. She accepts that I’m autistic and that it’s down to the wiring in my brain, and not the thinking in my mind (which can be changed, albeit very slowly!); and that, therefore, no amount of trying to bridge the gulf between us by comparing herself to me is going to help. And it ABSOLUTELY, DEFINITELY isn’t going to change me or the fact that I cannot understand the whole social world or connect at an emotional level the way that NTs do.

Basically, you’re never gonna love me “better”, so quit trying! I’m tired of people, well-meaning as some of them are, trying to encompass me into the fold of humanity and make me one of them: it’s suffocating, and I already have enough bloody problems trying to separate myself out from the rest of the world, and find who Lisa is. I copy – and not, I might add, through any willing or conscious desire to do so! It’s got to be one of the most annoying, and frustrating, aspects of my autism, and I am constantly having to fight to hold onto any sense of my own identity.

So please, give me a break. Stop telling me you know what I mean, when it’s patently obvious that you don’t, especially when you’re one of those people who think that what I’ve got is some kind of illness, and that I’ll get better soon – all I need is a bit of encouragement, and to try harder! I don’t want to disappoint you, but you could be waiting a very long time for that to happen. I’d been waiting for forty-two years, and I’m just as bewildered now by the world and its people as I was the moment I arrived here. Better just to accept that you’re clueless and I’m sense-less!

As A Matter Of Fact ...

Did I mention that I went for my aspergers diagnosis in June? Yes, I know I did: just checking! What I haven’t mentioned is that it’s taken two months for my report to arrive, and what a bloody disappointment it was too!

It’s only now that I have really begun to fully process what happened, and how I feel about it. And probably the major realisation is that, as usual, I had expectations – high expectations which had little basis in anything vaguely resembling reality!

One of the many peculiarities I have discovered about being autistic is that I find that I never seem to be aware of what’s in my mind until a long time later, normally after an event. In this case what appears to have been lurking in my subconscious was the belief that the psychiatrist I went to see, because of his long-time specialised interest in autistic spectrum disorders, was going to be different to your average psychiatrist. He was going to understand me, and be some kind of font of all wisdom – a God-like figure of unimpeachable knowledge about all things autistic. A bit over-optimistic of me, do you think?!

The first evidence for me that he wasn’t and that he didn’t arrived in the form of my diagnosis report. And here comes expectation number two, which I wasn’t fully aware of having either – I was expecting something resembling a certificate! I’d even had the vague idea that I might frame it and hang it on the wall! It was meant to be short, concise, factual, and clinical: and he was meant to state categorically, as he had done at the end of my interview with him, that there was no doubt I have aspergers, along with ADHD.

Instead of which I got a three page report which contains glaring factual errors - I now, apparently, have an A Level in English Literature (I studied it but failed the exam); my niece, who is actually eight years old, is now eighteen; my best friend, who was there with me, was a residential social worker (no she wasn’t: the only residential work she did was when she managed a residential unit for people who were severely autistic); she also, apparently, acted as my AA sponsor when I first joined AA at age nineteen (I didn’t stop drinking until I was twenty-one, I knew her briefly for a year not long after that, but then she didn’t become my sponsor until nine years later); I developed an eating disorder when I was in my twenties (I’ve been addicted to sugar and a compulsive overeater probably since I was about six, and my bulimia developed in my early teens), and on and on it goes.

As if this isn’t bad enough I have apparently overcome and mastered my compulsive behavioural tendencies through the adoption of a very strict timetable, which includes a careful diet and doing yoga twice daily, but there are occasions when something unexpected happens and I panic, and then I look to my friend for support.

Hello? Who is this amazingly well-disciplined, carefully controlled, independent and almost anxiety-free individual to whom this report seems to be referring? Was I body-snatched, and someone else was sitting in that room with him? Was he actually bloody listening to a word I was saying? Yes, I do have a daily plan that I am supposed to follow and which, when I can manage to stick to it for longer than sixty seconds, does actually work to keep me calmer: but note the words “when I can manage”. I haven’t yet managed to go for longer than a week without some distraction or other, and it’s usually to do with one of those pesky “compulsive behavioural tendencies” which I have been so successful in overcoming – namely surfing the web and obsessively reading anything I come across! Hell, I’ve spent the last week doing just that!

Plus my friend, to whom I apparently only look for support in times of crisis, is the lucky recipient of at least one phone call nearly every day, on account of the fact that I need her guidance and interpretation skills most of the time, especially since I have nothing discernibly resembling common sense!

I’m seriously beginning to think that perhaps he was deaf. My friend believes that he is probably autistic, and unaware of it, on account of his total lack of social skills, inexpressive face, and the fact that the building he works in had the same colour scheme throughout! She says that autism is probably his special interest, that he’s learned to diagnose an autistic when he meets one, but that he’s just copying what he’s learned from the medical and psychiatric circles which he frequents. So nothing radical or new to be found there then!

No, for that I have to continue to look within myself, and to have the dialogues with my friend who has more understanding of autism, especially aspergers, than probably all the specialists and psychiatrists out there making a very good living at our expense (and I do mean that to be taken literally!) – and she’s happy to share what she knows for free. She has said to me all along that, if it weren’t for the fact that I need a “formal” diagnosis in order to make it possible for me to access services that I might require at some point, she would have said not to bother because, after all, we both know that I have it, so what does the opinion of someone who doesn’t even know me matter?

Plus, as she also says, it’s disgusting the amount of money he gets considering what he does for it – he sat for a couple of hours asking a few specially designed questions, while I basically did most of the talking because I was so anxious that I couldn’t stop! And, of course, I’m autistic, so the moment I’m given the opportunity to talk about myself I take it – what else am I going to do?!

And, in the end, what is it that we are actually paying for? The ‘privilege’ of being given a label by someone who’s been trained to identify us from the rest of humanity! How ludicrous is that? That’s like being told that I can’t call myself female until I’ve been formally identified and given permission to do so by someone who’s been trained to recognise a woman when they see one!

After all, as I am now beginning to understand and embrace, ‘being’ autistic is part of who I am, just like being female: it’s not something that I ‘have’, like an illness or an affliction. It’s not going to go away or get better (though, with my acceptance and understanding of it, I find that I get better at living with it). I’m even beginning to question the idea of it as a condition, because it makes it sound like it’s some kind of defect that I was born with, an accident of my birth, rather than a design of God that I should be created in a way that makes me experience the world totally differently to neurotypicals.

So, in the end, what has my trip to see this all-knowing, all-powerful God of autistic knowledge given me? Yet more proof that man (in the generic sense of the word) is fallible, and doesn’t have all the answers, and can’t even get the bloody facts right when they’re sitting in a room being told them! Oh, and a three-page report that I can’t, and wouldn’t want, to frame to hang on the wall, but which will go into a drawer somewhere, only to be used in dire emergencies ie when I’m required to provide proof that I am what I say I am!!