Posts Tagged ‘asperger’s’

I have censored myself and have set out to deceive others in my speech, my writing, and in my actions countless times daily for the last twenty years or so. I have done so for good reasons, or for reasons at least, which seemed to me to be good, which is, I am almost certain, as good as any of us can ever really say. Though these reasons might have been primarily self-interested, there are forms of self-interest, which, motivated by the desire to prevent significant harms to our own selves, may, I think, be understood as being related to the moral imperative Kant and others proposed which prevents an individual committing suicide, and thereby denying the wider community the contributions they might otherwise have made. If there may be such a thing as an individual who does not exist or depend upon the wider community in order to either A> facilitate the contributions they are able to make to others or B> to sustain their own well-being in order to do so, then it is likely to be one who had previously depended upon such goods as only such a community may deliver, and such individuals are likely to be as rare as, to use my father’s phrase, hen’s teeth, meaning they may justly be overlooked. To follow the above confession, then, the apologia: where I have censored myself and deceived others, I have in part done so in order to protect myself, perhaps, but have tried, with what social capital I believed myself to have gained (better understood here as the social capital I would have received by default, and which I stood to lose by behaving otherwise), to help others as best I could.

How? Why? What kinds of cowardice and deceptions am I trying to now obfuscate by these abstract yet meticulous lines?

Firstly, it is an exaggeration, but not by much, to say that the introductory paragraph above could only have been written by somebody with Asperger’s syndrome. Whether it may be considered to achieve its aim or not, the punctiliously logical style of writing, with its many clarifying clauses, is characteristic of the manner of thinking, of writing, even, in exceptional cases, of talking, of this one of the two conditions I have tried to hide from the world by passing as somebody I am not. I can write in a different way, and most often do. In fact, the writing I most dedicate my time to bears no relation to the above and I would bin it if it did. Still, it is one of my most prominent dispositions, was perhaps once something like a default, and it is one not shared by most of the people I meet; a disposition which, in many of its manifestations, is different enough from those of more commonly distributed styles of thought to prompt extreme and negative judgements in people. Whether or not thinking in ways different to the above takes effort on my part, trying to play it down or cover up the fact it ever exists, takes work, and must, I think, exert a psychological toll every day of my life.

Of course, as far as this first condition goes, manners of thought and expression are not the whole picture. The social elements of asperger’s syndrome are the best known (though it strikes me here that I ought to say the most widely appreciated, since I am far from sure they are well known), and are likely to be for most of us, the most significant.

It’s difficult for me now to pick this apart from other influences, and I suspect that is not merely a matter of my own experience. It is true that I was often alone as a child, and it is true that I have most often been alone since. I certainly spend much of my free time on my own now. Indeed, my phone rarely rings, I receive few texts, and I rarely pick up the phone myself either to answer a call when one does come in, or to make one myself.

The statement that is often made about people with Asperger’s syndrome and autism spectrum conditions (ASC), however, is that we do not feel the need to socialise, and that is not a claim that can be easily substantiated by observation. Firstly, even to make the claim that we aspies lack the drive to socialise that allistic / neurotypical people invariably have is not to compare like with like if a> what is meant by this is that aspies don’t like to socialise with allistic / neurotypical people and b> the social drive being held to be normal or indeed normative, is that of allistic / neurotypical people seeking the company of allistic / neurotypical people ie. those who, broadly speaking, have the same dispositions and manner of processing sensorial and social data.

To my mind, what those who make the above case that autistics lack a social drive ought to seek to prove is that they do not seek, with a consistency that matches their non-autistic peers, relations with others, with relations being defined more inclusively than is often the case, to exclude the possibility that they are encoding assumptions about what relationships should look like from allistic experience. They should be careful to ensure both that they do not mistake failure to make or maintain social relationships with the lack of a desire to have them, and that they do not confuse fear or anxiety to approach others with the lack of a desire to do so.

Around one per cent of people have autism. Most class sizes are a good deal smaller than one hundred. Confining ourselves then for the sake of argument to those character-defining relationships formed in school, it is reasonable to assume that most non-autistics can easily find, and choose between, those of their peers who are most like them in terms of their neurological makeup. Contrariwise it is fair to assume, I think, that although in many schools, autistics might find each other and pair up to socialise, perhaps making friends in different year groups, this is likely to demand more interactions (most of which will be of a discouraging type), and, perhaps, more difficult interactions, in order to achieve.

Writing this now in short stints, my head full of the shifting shapes, and weights, of anger and disappointment, self-hatred, bitterness and misanthropy that has taken hold; the day dragging on with nothing giving me pleasure, and with tomorrow’s day at work appearing to me now to be full of unforgiving encounters, and with every person I bring to mind being one of a number of kinds of rebuke, I am starting to think that even this piece, intended to bring it all out into the open, is a species of evasion. This writing style is not here because it is characteristic of autistic thinking or writing. It is here because it is opaque, it obscures the subjective with dry sociological generalities.

How about this? I was in the supermarket today. I was depressed. I had woken up early, a result of my new medication regime, tackled my novel for a while (a section where my character faces down a number of demons, transpositions of those of my own; a section which features suicidal ideation and the hostility of the social world), had breakfast (which is never easy, food being a big issue for me as I may go on to explain), and then headed to Tesco to buy a few more groceries to help to tackle some of lesser, but still substantial difficulties of the day, and of the week ahead. Having changed from listening to an In Our Time podcast on Mrs Dalloway to John Le Carre’s Smiley’s People, which I have been listening to unsuccessfully and intermittently for months, constantly hopping back to pick up the strands, I do my usual walk around the isles and my phone rings. “Home”. Now this is always a dilemma. One that is invariably resolved by the following questions: “how many times have I hung up on them now?”, “if I take this now will I have reason to extricate myself in a matter of minutes?” and “if I take this now, will it save me having to take a call at a more inconvenient moment later?”

I removed Skype from my computer on a security drive some months ago and didn’t convince anybody to try Jitsi. I hadn’t often used Skype in any case. I would talk every few months with one friend in Germany and feel awkward at times – often – because with Skype it’s tougher to stand side on to somebody. You have to look them in the eyes. I can do that one to one. Not as regularly or as steadily as some people do, perhaps; I find it difficult enough at times that I suspect I don’t do it ‘right’, but I can do it. On Skype it feels different, uncomfortable, even with people I care about, like this particular friend: perhaps the one person I have tended to open up to over the last two, three years. Most of the time I would cry slow connection and have a voice-only call. And it was true most of the time. We would often start on video and have to give up. And I don’t want to give the impression this is in some way better for me than meeting up in person. It isn’t. We meet up so seldom that I have often, perhaps invariably, fallen into a depression after meeting up, knowing that it would likely be months before we could do so again. (As I mention above, we must not mistake the inability to make and maintain friendships and other forms of relationship with the unwillingness to seek them, or the desire to have them, and the few close friendships and relationships I have managed to make and keep up often differ in most instances from those of others, largely in their intensity, as if I could be compared to a sub-atomic particle with such esoteric type and spin, that successful interactions, though rare, are proportionately the more vigorous.)

These are examples, then, of my closing down, of shutting people out, of making it harder for them to get in touch, or allowing them to do so only upon my terms (though, once again, the friend I mention is an exception).

There are the other times I reach out, and do so perhaps clumsily. Ineffectually at any rate. It may be that I Spend months abruptly declining every social invite, locking myself away from all social interaction until either a major project (we’ll come on to the projects), goes bust, or the lack of society drives me near insane with loneliness and the unexpressed, and that I then suddenly from nowhere talking about going to gigs, getting involved in sport, even going to watch live sporting events. It may be that I simply go about it, whatever it is, wrongly. That is, that, though it might be so difficult to outline what one does do when one asks others to join you in some kind of social event that the idea of putting together a guide to doing so would strike many as absurd, it is easier to spot when somebody get’s it wrong; it is easy enough for me much of the time, to see when somebody else gets it’s wrong. There are the other times I get it wrong, erring on the side of over-enthusiasm. Often, this might be traced back to being so desperately in need of a friend, or something more than a friend, and deciding, for what might be little more than arbitrary reasons, that somebody has proven themselves to be trustworthy or uncommonly empathetic. Perhaps (I am never, in those mortifying days and weeks of postmortem after such an event, sure how far this might be true), one of my dispositions is to work on a mental model of emotional reciprocity until such a time as I remember to stop and question my assumptions about a given relationship – something I can only do when I am in a ‘mode’ of relating to my environment, that throws up a firewall between myself and people I will later, inevitably, decide is a barrier that must be brought down.

Of course, such approaches are only part of the picture. I could get them right, but if people have long before observed that I am strange, that, perhaps, I am desperately sad or lonely, in need of company or caught up in my own thoughts more than is typical even for those who are on the introverted side of a standard range, they may decline a properly phrased invitation, or shy away from my company.

Who wants to be the person somebody who is having a really hard time (let’s say somebody at work or some other such random group of people) invariably turns to to lean upon. Who wants to have to constantly come up with excuses and turn down persistent requests.

But, now that I have shifted into the first person to explore this topic, which is being written over a period of weeks in short stints facing down my own demons in a manner which can only engender very real feelings of depression, I am forced to confront the fact that it is not, in me, a mere matter of asperger’s syndrome, though the patterns typical for that condition are most certainly present. No, a number of psychological reactions are at work, each with their own patterns and periodicities. The fact that I have such difficulty trusting people is not a direct result of autism, but a reaction to the experiences I have had in my life; difficulties with dealing with others which, at times, perhaps reached a pitch where the term trauma could be used without hyperbole. Then the social facilities I have picked up over the years of trying to work out people and how to work with them; facilities which mean that many people – chiefly those who know me in certain limited contexts – are incredulous when the term autism is used.

Since I have also restricted myself to discussion of autism for now, I also will not try here to cover the social difficulties associated with those other conditions I hope to go on to discuss. Suffice it to say, though, that, for five years at least, I have spent most of my time on my own. I am, to cap it all, a recluse, a celibate; socially, a miserable failure.

* * *

I have not, I can see, got the size of the social side of things at all well. Nonetheless, I have go it out, and, given that the aim of this post is principally to make a confession, it is better to post than hold out any longer.

I have said that I have been writing this post in short sprints. That is my working practice more often than I would like to acknowledge even here, and, quite aside from the depression adumbrated here above, I hope in later posts to explain why this might be. I plan two or three more such posts on this subject.

For now, it has been a long, lonely weekend, and I need this off my in-tray to clear an hour or two’s buffer of what I hope (though also doubt) could be a state of relative peace of mind before I go back to work tomorrow.

If any of this means anything to you, or to anyone you know, please let me know.

The last few days have been as bad as any I have known for a very long time. I rang in sick today. In fact, I rang in sick and then, failing to get through, I wrote an e-mail. I expect to hear about that, be dressed down for it and/or sacked. I imagine I will be told that it is unprofessional. Maybe they will have read something that I have posted to social media. Perhaps they will simply have had enough of my recalcitrance, my periodic recriminatory e-mails, my being so stubborn when everybody else knows to be so pliable. But then none of this is anything new. I often expect to be sacked. I have changed jobs more than most and though I have walked out of places, I have not yet been sacked or indeed disciplined as far as I can recall. It is just that I have never not been a square peg in a round hole. I have never found it easy to simply knuckle down and do what I am told if I don’t believe in what I am supposed to be doing.

I have mentioned before that I have AD(H)D. I have mentioned before that I have asperger’s syndrome. Usually such posts last out there a couple of days, if that, attract a couple of more or less accidental visitors before I take them down. I have 400 followers on Twitter but I have perhaps twice tweeted a link to a blog post. What I have written here has most often been a kind of solipsistic venting. Posts, that is, have usually taken the form of the kind of off-loading I would prefer to happen face to face, in a pub or, better, a cafe; during a run; even those that pour out of you somewhere, when you close a car door and get moving, step out on a hike, walk out into the smoking area: the kind of chat you have with somebody you trust. Probably, they are the kind of chats you don’t even need when you have somebody around you can have them with. Blogs, for me, have occasionally, when they mean anything at all, taken the place of friends and acquaintances who get what I am about, a distributed network of potential sympathisers, confidantes. As I write, it doesn’t matter if they are there. I would almost prefer nobody to hear what I am saying; it matters that they might hear, they might get it, they might have been waiting for somebody, finally, to say the same thing.

I have closed up over the years, got my guard up high, began to throw in a tapper jab in now and again when I am not sure whether somebody is thinking about getting on my case. I would say I learned to ‘trust, but verify’, but I put up the threshold for verification so high nobody can pass it without getting close enough to show me their true selves, and I don’t let them do that if I don’t trust them.

The conditions named above lead can lead to reclusive dispositions in and of themselves. The degree to which the natural disposition of those with Asperger’s syndrome is anti-social is contestable – Tony Attwood is balanced, it seems to me, in alluding to both the difficulty neurotypicals experience in empathising with their Aspergic peers and also the propensity Aspies indeed have for certain kinds of socialising, mixing well with others like themselves, and those who are essentially more logical and scientifically-minded than most but who do not possess the requisite core traits of asperger’s, or demonstrate those more peripheral traits in sufficient quantity to justify diagnosis. Nonetheless, if the disproportionate incidence of children with Asperger’s in Silicon valley and its equivalents suggests that there is indeed some kind of sociologically significant aspergic socialising going on somewhere, it remains the case that there are a significant minority of Aspergics, both diagnosed and otherwise, whose one truly mastered facial expression is “fuck all y’all” and who don’t willingly speak to anybody without a gaming headset on and a virtual firearm. AD(H)D is the opposite case: it is frequently assumed that those with ADD/ADHD are very sociable, perhaps too sociable. Indeed, often they may be. If those with ADHD are able to slot into a dependable social circle – a sports team, perhaps, or a team associated with a relatively ADHD-friendly job – it may be throwing themselves into the social world that they need over and over to provide the stimulation they need. But here is one of thoseĀ  examples where a given condition may lead to two or more experiencial and behavioural manifestations that are not merely discrete, but in fact perfect opposites. People with this condition may find themselves at one or the other side of a notional normal distribution graph of sociability and struggle to scale it.

Edward M. Hallowell, M.D. and John J. Ratey, M.D.:

ADD can interfere with one’s interpersonal life just as dramatically as it does with one’s academic or job performance. To make friends, you have to be able to pay attention. To get along in a group, you have to be able to follow what is being said in the group. Social cues are often subtle: the narrowing of the eyes, the raising of eyebrows, a slight change in tone of voice, a tilting of the head… a lapse in social awareness due to the distractibiliy or impulsivity of ADD can preclude acceptance by a group or deny understanding from a friend.

All true (though I am not certain the degree to which the social cues examples used above can be objectively ascribed to ADD qua ADD). And indeed it goes deeper. People with ADHD struggle to maintain meaningful loving relationships almost as much as those with asperger’s. Additionally, too, the fact that they are underemployed, that they may move around a lot, lose jobs and be out of work for long stretches, may mean that they are socially excluded. And whether or not we accept that those with asperger’s need less in the way of social contact than neurotypicals, we can agree that, whatever the deficits in social function experienced by those with ADD, they don’t desire social contact any less than others. This leads to their experiencing hugely disproportionate rates of depression.

For me, I suspect the principle cause is different from those adumbrated above, though I can’t be sure that the symptoms of ADD and Asperger’s, or indeed the aetiology of the disorders themselves can be meaningfully unravelled and independently examined in this way. I sometimes thing that they, and other neurodevelopmental disorders which appear to be linked in terms of predispositions which appear to be genetic, may be discrete manifestations of a self-similar underlying cause, perhaps a metabolic anomaly. Whatever the truth of this, the main problem I experience as limiting my scope for social life is not my unarguable inability to work out what you people are thinking or my once-regular incapacity to pay mind to whatever it is you are banging on about, nor even the iron law that seems, wherever I go, to guarantee that all but the peaks of the conversation of 19/20ths of those I meet don’t so much as tickle the underside of my vertiginous boredom threshold.

It is that I have to do so much to keep my symptoms down to near-manageable levels. This here now is the paragraph where I will stall, where I will fail to complete this post. This is precisely where it will grind me down. Where merely thinking about taking on all of the misconceptions, the sneers, the ignorant dismissals wears down what energy and focus I have until I am sent on some reactive escapade, needing to leave the flat, get out and distract myself from all of it.

And so here I am several hours later. I have done a little debugging and, fingers crossed, it has worked. We’ll get on to that. In the interim, though, I have mentioned food before as a major problem of mine before now. I have worried, indeed, that it would see me leave Prague. Perhaps it still will. It was a contributory factor in a simply awful week spent out in the hills here back at the end of the winter and there is not a day it does not hugely complicate.

I was thought an idiot in the conveyor car wash I worked at when I was 17, 18. I hadn’t often been considered an idiot at school and I am rarely considered an idiot now. There was no good reason to have been considered an idiot back then either. I was reading the broadsheets in that office, worked my way through the culture section of the Observer, took in books to read from the library and, when I was worried about the petrol fumes, read up on PM10s in my brother’s cast off copies of the New Scientist. Still and all, the manager was a class A prick and for all that was going on inside my head, none of it was being expressed.

“You’ve got the constitution of an ox,” he used to say. I used to stuff myself with sweets, Ginsters pasties (MMMM, Ginsters Pasties!) and flapjacks. For years I lived for sweets. Sugar was a compulsion. Had been for years. On a trip to Spain when I was six or seven years old, I would empty the packets of sugar from the tea into my mouth. In my first years of secondary school, I would hide midnight snacks in my room and wait up till midnight to listen to Ian Perry’s Midnight Line.

It was at university I got looking into it the more. Cooking may initially have been a procrastination exercise. I used to cook for the whole house, regularly. I would pick up cookery books and experiment with different styles of cooking. I got pretty good at Chinese, did a few nice Italian dishes, some traditional British stuff. Ended up paying for most of it as I recall. Later though, when I was doing a lot of reading into my problems – which were as obvious then as they have ever been – I got into nutrition in a big way.

The first book, spotted on a shelf of the Student Support Centre woman who worked there part time while doing some postgrad research on Byron, was Potatoes Not Prozac. I’ll not give a link. It was pseudo scientific and not the place I would recommend somebody to start. Start me it did, though, and since even a stopped clock is right twice a day, it gave me a couple of decent leads despite its flaws.

At first, I switched to brown bread and cut out the highly refined carbohydrates. Since I used to eat a lot of chocolate and likely had some nutrition-free cereals for breakfast, this was a big change in itself.

Other changes came piecemeal, and always with a fight and multiple backslides that have continued ever since. Nor can I remember now exactly what had the most effect. I got my degree, but came out the other side of it as chaotic as I went in with a mental microclimate that threw around ideas, priorities, impulses and interests like Wizard of Oz Tornado threw around houses and farm animals. I kept on creeping forward with it, but since learning what worked and what doesn’t was a slow process and since I have always said that if I had the organisational capacity to follow the diet, I wouldn’t need it, it was a constant battle marked by retreats and significant defeats as well as progress.


I’ll go into it a little more. There is a lot to it. And I have not yet touched on what has made me ill this time around. But it has been a battle getting this down, and I’ve done enough fighting with my head these past few days, so I will break this into sections.