Friday, 8 January 2016

The Dishonesty of NTs


I don’t want anyone getting me wrong here – this is not an anti-NT rant. I don’t do such things, not even in my worst and most frustrated moments. That would be doing a disservice to the many NTs I love dearly. Not to mention that I don’t believe that autistics are superior overall to NTs, anymore than I believe that NTs are superior to me/us. Rather, we have strengths in different areas, and in our thinking and approach to the world and life and other people, we’re simply, totally, completely and overwhelmingly different.

And it’s one aspect of that difference I want to explore here, as I attempt to get to grips with something that’s long puzzled me about NT behaviour. Namely, their dishonesty. Or what seems like dishonesty to us.

Note, I’m not talking here about those blatant acts of dishonesty – theft, shop-lifting, burglary, fraud, embezzlement, con-artistry, espionage, treason, and so on - that get punished by the law, and rejected by most NTs even, and rightly so. Nor do I mean the deliberate but not usually illegal deceptions of negative intent – the cheating spouse, the manipulative workmate, the political trickster. I’m talking, rather, about the little acts of social dishonesty.

I’ve come to realise that NTs, unlike us, place ‘getting along with others’ way, way, way ahead of ‘telling it like it is’. So they will do all sorts of little fudgings of the truth in service of that, where we would just blurt things out – and then get jumped on for being ‘rude’, ‘insensitive’, etc. As we almost never intend this, we end up confused and even hurt. What, we wonder, did we do wrong? Why is the truth so bad?

Anyway, here’s something of a guide to the various kinds of social dishonesty (though they wouldn’t call it that) I’ve seen NTs doing.

Phrasing things politely. This is using diplomatic versions of the truth, to soften harsh messages. So people will say that so-and-so is “a bit upset”, by something, when in fact they threw a tantrum, or are bawling their eyes out. Always take a message like this as a huge understatement – the truth is almost certain to be far worse than the literal words. Phrases like “a bit”, “kind of”, or “somewhat” are red flags for this sort of dishonesty. Even between aspies, I’ve seen this one trip some of us up.

Euphemisms. This is a variation on polite phrasing, where softer expressions are used to blunt harsh realities, eg saying that someone has “passed away” rather than simply “died”. I have often used these myself, finding them either less likely to cause offence, or just kinder. Or more bearable – eg when referring to my mother’s recent passing. It has its place therefore, but too much of it is like constantly wearing cotton wool in your ears – you start to feel like everything is a bit muffled.

Circling the truth. Basically, this involves verbal beating round and round the bush, till you’re not even certain what the heck the bush is. I have always found this extremely difficult to cope with. I’m still not sure what the point of it is, other than a kind of super-politeness, or maybe not wanting to commit to saying the truth, but if you’re faced with someone who never clearly states what is it that they want, or are trying to say, circling is likely what they’re doing. My recommendation is, be blunt. Ask straight out what they mean. It tends to disconcert people, sometimes annoy them, and even then you don’t always get a straight answer, but at least the issue is out in the open. And that’s got to be far less anxiety-provoking for you.

The little white lie. Years ago, my then-partner told me about a previous flatmate of hers, who fancied a guy who was obviously gay, something she refused to acknowledge, even once saying to my ex “people say so-and-so is gay, but he’s not, is he?” My ex’s private thought was that the guy was as camp as a row of pink tents, but she agreed no, he wasn’t. This is the ‘nice’ lie, to spare someone’s feelings and supposedly not harmful, though I have my doubts. How can not facing up to the truth be harmful? How long would that woman have gone on deluding herself this guy was potentially available? And how hurt would she have been, in the end?

 If you do hear someone telling one of these white lies, however, it’s best not to barge in with the truth. These situations often needs delicate handling, and are best left alone by those as socially clumsy as we aspies. Of course if someone asks you outright, they should know better than to expect you to lie, but do ‘phrase it diplomatically’ if you can.

The ‘Fairy Tale’. A more elaborate version of the ‘little white lie’, we see this one most especially on sitcoms, where some of the characters invent a complicated tale to tell another character, because they feel they can’t tell the truth for some reason. However it also sometimes happens in real life too, usually I think to spare someone’s feelings, or to escape the consequences of something.

I’ve been tripped up by this one more than once – confused, I would jump in with “no, that’s not true!”, and blurting out the truth. And of course getting a very sharp reaction, which confused me even more – why were they telling a lie in the first place, and why didn’t they tell me they were going to do it? I still think it’s stupid, and usually unnecessary. Or at least they didn’t need to invent such a convoluted lie.

Zipping the lip. Sometimes NTs avoid telling a lie by simply saying nothing at all, also known as ‘keeping mum’, ‘keeping stum’, and similar phrases. Like the little white lie, it’s done to spare other’s feelings, especially in situations where it’s felt that revealing the truth would do no good, and possibly even hurt someone. So there is a place for it, and I’ve done it myself – kept quiet about stuff that it really wasn’t necessary to reveal.

Maybe, for instance, you’ve got a sweet little old auntie who’s on her deathbed, and who’s always idolized her long-dead husband. Why tell her that in fact he had an affair thirty years ago? What purpose would be served by telling her now? (This is a fictitious example, I hasten to add, not one I’ve ever personally faced.)

Keeping our mouths shut is I think about the only ‘social dishonesty’ we aspies can manage, in response to all the situations mentioned above - difficult though it can be, not to blurt things out! I’ve found it best to watch what others are doing. If they aren’t revealing something, I don’t either.

It’s important to remember that all of these ‘dishonesties’ are done with positive intent in mind – the sparing of other’s feelings, at least in the short term. Whether they do in the long run of course is another question, but the golden rule here is “if in doubt, don’t say anything”.

On Being Challenged, Not Disabled


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?

Tuesday, 1 December 2015

Why I Empathise With The Deaf


As someone with both Chronic Fatigue Syndrome and Aspergers Syndrome, I empathise with all my fellow disabled. However I'm finding the group I empathise most with, next to my fellow aspies of course, are the deaf.

 

There are lots of reasons for this. They start with the personal, such as my having known a deaf woman for many decades through a family connection. I've also had a slight hearing loss since my 20s, and, like many on the spectrum, I almost certainly fit the criteria for Auditory Processing Disorder as well. People's words frequently come across as sort of 'mushed together', and I have to unscramble or 'decode' them. It's hardest when speaking on the phone, and I've realised recently that face-to-face I do quite a bit of lip-reading – and so know how difficult-to-impossible that can often be, eg if someone has an accent, or a moustache over their lip, or turns their head away or mumbles.

 

But beyond these personal reasons, I find many similarities between the autistic and the deaf.

 

We've both have had our conditions 'medicalised', seen as pathological. We've been told that the Best Thing that can happen for us is some sort of 'cure', whether it be cochlear implants, learning to imitate speech and lip-read, or punishing rounds of 'therapy'.

 

We've both been taught we are 'lesser than' or inferior. Our natural states have been cast as 'lacking' or 'deficient' in some way, and we’ve been treated as though we’re somehow less than other human beings. We've been taught that to be hearing/NT is better, and that They Know Better Than Us, about all sorts of things, most especially how we should live our lives.

 

We've both been seen as 'stupid'. We've been called 'retards' or 'dumb', held back in education or given a lesser education, assumed to be non-intelligent if non-speaking, and often had it assumed, or even specifically been told or taught, that we ‘can’t do’ a lot of things, and so generally not given the same chances in life.

 

We've both been kept ignorant. Both groups have often not been informed of a lot of basic stuff about the world. Neither group 'just pick it up' - the deaf because they don't hear it, autistic because they don't 'see' it. If the deaf don't learn and communicate in sign language with their parents as children, and the autistics are undiagnosed, then the likelihood of this is increased. Both groups suffer lifelong consequences from this.

 

We’ve both have problems with communication. Sign language was suppressed for many years, and even now, few people outside the deaf community and their immediate families and teachers know sign language, and interpreters are still thin on the ground. Non-verbal autistics are still too often seen as ‘not having anything to communicate’ - even if they have communication devices, they’re still sometimes not listened to. Even if an autistic is verbal, they can also have difficulty communicating their needs to others.

 

We've both experienced forced normalisation. There’s been so much pressure on us to be or at least pretend to be ‘normal’, whether it be the tyranny of oralism for the deaf, or 'indistinguishability from their peers' for us. The over-riding message has been that ‘not normal’ is bad, that we must not sign, or flap, or show any obvious sign of our ‘defectiveness’, that we should aspire to be normal, or to imitate it as closely as we manage, no matter what the personal cost to us.

 

We've both have been punished for doing what comes naturally. This is of course sign language for the deaf, and stimming and other autistic behaviours for us. This follows on from that forced normalisation – all our natural behaviours and means of communication have been suppressed “for our own good”.

 

We've both been victims of various kinds of maltreatment. We've been beaten up, bullied, abused, yelled at, laughed at, scorned and jeered at, rejected, ignored, etc, etc, ad nauseum. We've been excluded from professions and jobs because other people tell us we aren't capable of them, we've been discriminated against, jailed, put in mental institutions, or even killed. The list is a long one, and it ain’t over yet.

 

We’re both invisible to others. We’ve both been marginalized. As far as the rest of the world is concerned, deaf or autistic viewpoints are so rarely seen or heard, it’s like we might as well not exist, most of the time. And so our needs are rarely if ever taken into account when facilities are designed or events staged. A recent example is the lack of captioning for Rugby World Cup events on New Zealand TV. It’s like it never occurred to the Powers That Be that the deaf might be interested in watching rugby.

 

We’ve both had to find our own ways of doing things. For both groups, a lot of the aids we need are visual. Charts, lists, maps, social stories, teletext captioning, cellphone texting, AAC devices, computers, the Internet/email, etc, are of vital importance to us, yet often we’ve had to find, invent or insist on them ourselves. Others have been so insistent on normalising us that they’ve ignored or denied us what we really need.

 

We've both overcome all the above, to form communities of our own. We’ve rejected so much of all of this BS, to find each other, support each other, and form our own communities, where we can communicate, share, and socialise in our own ways, on our own terms. There is often a sense of relief and belonging somewhere, for the first time, when we enter these communities, plus a shedding of a lot of old worn-out ideas about who and what we are.

 

Things thankfully have changed and shifted for the deaf in recent decades, though I don’t doubt many of them would still say there’s a long way to go. We autistics are still stuck in the past in this regard, somewhat behind the deaf, a lot of the worst things are still happening for and to us. It fills me with frustration, but I remain hopeful that we will find ways to effect change. It’s certainly about time. Both groups deserve so much better than this.

Friday, 20 November 2015

Stupid And Smart At The Same Time



I came to the conclusion recently that I’m stupid. Actually this is not a new conclusion, but an old one revisited. I’ve always felt ‘stupid’, and sometimes have even been told I am. I writhed in shame at my stupidity for many years, trying desperately to conceal it, to pretend I ‘knew what was what’, or ‘knew it all along’, or withdrawing from interaction rather than risk revealing the depth of my stupidity. I was so ashamed of it, embarrassed by it, angry at myself for ‘not learning’ and ‘not knowing better’, especially when ‘everyone else’ seemed to ‘just know’ these things.

By ‘stupid’, I mean that socially, I’ve always fumbled, blurted, made glaring errors, tripped over my own feet or put my foot in my fat gob (metaphorically speaking), and generally trampled all over other people’s sensitivities, like the proverbial bull in a china shop. Even now, after all my years of watching, learning, imitating and practising social skills, I still do these things with monotonous regularity. It seems every situation is different, the rules keep changing, and I can’t keep up, or there is some rule I somehow never learnt, and haven’t needed till then, and only find this out when I transgress it. Or I forget ‘old’ rules and blunder across the invisible lines, because I’m tired, overloaded or thinking of something else. Social interaction is full of such traps, and often seems a business of smoke and mirrors, where you never know what’s awaiting you.

I’ve also always been ‘stupid’ when it comes to everyday things, whether it be organising myself and my belongings or just doing ordinary tasks that others take for granted I will know how to do. The order or method of doing things that others, once again, ‘just knew’, never occurred to me, unless I was specifically shown it, and shown how to do it, with what objects, in what order. So I would do household tasks I was set, or organise my school things, for instance, in ways that seemed okay to me, or which I was often just guessing (hoping!) were right, but which would have others bewildered, scornful, laughing at me, or even getting cross. These blunders happen less frequently now, but they do still happen. I’m still stupid.

And yet at the same time as I’m stupid, I know I’m smart. I frequently notice details others miss, am often able to find the lost sunglasses or piece of paper quicker than others, and can keep track of lots of little things, which makes me invaluable in detail-orientated tasks or jobs. Which doesn’t mean I’m incapable of grasping the ‘bigger picture’, just that I usually have to build it up from the small things. And when I do grasp that big picture, I often do so more thoroughly than my NT counterparts. It’s this, plus that attention to detail and lots of studying and research (I always did waaaaay more reading than the standard reading list) that saw me get plenty of A and even A+ grades at university level. Academically, stupid I am not.

I also have a much better memory than many around me, often being able to recall conversations or events that happened months, years or even decades ago, to the astonishment of others. I remember details they’ve forgotten, about holidays or other things that happened when I was a child even. Mostly, it’s a visual memory too, so I can draw or verbally describe the events, usually well enough for others to recognise the place, time, etc, and trigger their memory.

I have a broader general knowledge than most people, often knowing obscure facts about all sorts of things that I’m then amazed others don’t know! Plus I have a fairly in-depth knowledge of my special interests, and could probably pass an exam in some of them without studying. (Just this morning, I was complimented on my almost-encyclopaedic knowledge of one of these areas.) I can often scan new information and grasp it fairly quickly, especially if it can be compared to something I already know, or it’s connected to one of my special interests.

Then there’s how my brain is constantly active, with thoughts, ideas, images, scenes, scripts and dialogue playing themselves out inside my head, some of which end up being written down as blog posts, articles, stories, whatever, or become images I paint or draw. I find it almost impossible to stop thinking, probing, examining ideas, I am constitutionally incapable of just blindly accepting any kind of ‘party line’, and resting there. I always want to go further, probe deeper, know more. It’s a strength of mine, I believe.

I’ve also used my intelligence to compensate as best as possible for my ‘stupidity’. Not only have I painstakingly learnt as many social skills as I can, I’ve also taught myself many things I started out adult life not knowing, from how to use tools or machinery to how to do various things online. Given a little time, I can usually figure out how to use anything new – generally by doing the revolutionary (!!) thing of actually reading the instructions. Sometimes I’m a little slower than others might be to learn new things or routines, especially if it’s a new situation way outside my comfort zone or I’m feeling under stress, but once I do grasp something I generally end up knowing it better than others, and remembering it better too, long term.

So how can I be so stupid, and yet so smart, at the same time?

I’m convinced both are due to my Asperger’s/autism. Socially, I’m ignorant, still, and likely to remain so. I’ve learnt as much as I can, but it seems I can’t improve any further without that mysterious something, an extra sense maybe, that all NTs seem to be born with. So I’ve decided to just accept that I’m stupid, and always will be, in the social-interaction and executive-functioning areas. So be it. There’s actually a certain relief in that, in no longer trying to conceal it or deny it. Because even if I am stupid, I’m still glad to be me, and to also have the kind of smarts that go with being Aspie/autistic, and with simply being me. I wouldn’t be any other way.

How do other aspies/auties feel? Have you ever been called stupid? Do you think you’re stupid? Do you feel stupid? And yet really intelligent about many things, all at the same time? Is this a common thing? I have a feeling that it is, but I’m curious to know about others’ experiences.

Thursday, 17 September 2015

Autistics, Research and Assumptions


It seems that every time an autistic, especially a non-verbal one, pops their head up, maybe publishes a book about their life, revealing themselves as a 'real person', complete with a fully functioning intelligence, they are described as 'atypical' of autistics in one way or another by the supposed 'experts', when what is really meant is "they don't fit the theories we have about autism". You wonder how many of us have to come out of the woodwork before they finally accept that their ideas about autistics (especially non-verbal and/or so-called low-functioning ones) are all wrong.

 

Even Temple Grandin, when she wrote her first book, was considered 'atypical' of autistics for being able to lie, play imaginative games, and have friends. One academic referred to her first book as 'ghosted', implying she hadn't written it herself.[1] Some autism 'experts' even claim that being autistic means by definition being unable to have self-awareness[2], and so if we do demonstrate it, this means we're not 'really' autistic (and hence can be ignored). This is similar to the criticism autism advocates sometimes get, when we're told that if we can speak, or write, or live more or less independently, then we're not like the 'real' autistics (and hence can be ignored).

 

An interesting book I've been reading lately, called Autism and The Myth of the Person Alone, by Douglas Biklen, a professor of Disability Studies, challenges a lot of these ideas. It's provided me with much food for thought, including how much I have in common with non-verbal autistics, those who are generally deemed 'low-functioning' and 'non-intelligent', something I already knew really, but have had confirmed. However it's the approach he took to his research that especially interests me.

 

Rather than assuming he already knew it all about autism, he took the radical step of actually interviewing autistic adults, non-verbal as children and all previously deemed intellectually handicapped, who had learnt to communicate by typing, and most of whom were still non-verbal. In other words, he first found out what autistics themselves think and say about themselves, and only then formulated his theories. The result is a book that challenges a lot of the prevailing ideas about autism, and is a notable exception to most of the professional literature about autistics.

 

Unfortunately, most autism researchers seem to take the exact opposite approach to Professor Biklen. He points out that the 'deficit model' prevails in autism studies - ie, researchers formulate theories based on the 'normal' perspective, and then test it on autistics, "in effect saying: What does the person labelled autistic lack that the 'normal' person possesses?"[3] This book was published in 2005, yet this approach, unfortunately, still prevails, ten years on.

 

An classic example of the deficit model at work is in this experiment. The researchers recruited a group of 'high-functioning' autistics, and matched them for age, gender and intelligence with NT controls. They gave them all a sum of money, and then presented them with a series of choices, asking them if they wanted to contribute some of the money to a pre-set charity (UNICEF). This was done in two rounds, once alone and once with an unfamiliar observer.

 

They found that NTs were inclined to contribute more to the charity when the observer was present, especially those who donated far less when alone. The autistics, however, donated the same or even slightly less when an observer was present, regardless of how generous they were when alone. The researchers concluded that autistics "have a specific deficit in taking into account their reputation in the eyes of others".

 

This "conclusion" is riddled with assumptions, starting with taking it as a given that we have a 'deficiency' of some sort, and all the researchers have to do is find it. They then assumed that the results meant autistics weren't able to envisage what others thought of them and consequently change their behaviour to impress, as the NT controls did. Thus it takes our supposed lack of theory of mind as a given, even though this is questioned by many (including Biklen), and merges two assumptions - a) that we don't know others are thinking about us, and b), that if we did we'd change our behaviour as a result.

 

So they assume their results mean the autistics lack something the NTs have, when it seems to me it could just as well mean the autistics having something the non-autistics don’t – eg the ability and willingness to evaluate the worth of something on its own merits, regardless of what others may think of us for how much or how little we donate.

 

Perhaps the most curious assumption though, is that the researchers obviously regard it as a good thing ("pro-social" and "healthy") to pretend to be more generous than you really are - in effect to lie and pretend - in order to "manage your reputation", ie to boost your standing in other people’s eyes! From an autistic’s point of view, this seems very strange, and even ludicrous.

 

The research was of course biased from the start. The very language used demonstrates that - the NT controls, or NTs in general, were repeatedly referred to as "healthy", while the autistics were referred to as having a "disorder" or "deficit", or as being "impaired", multiple times also. Moreover, the working hypothesis was that "social reputation effects are selectively impaired in autism". They also referred to the "incentive to improve one's social reputation" as "uniquely human" - and then say we don't have this incentive. Implication? We're not fully human. We couldn't win.

 

I don't feel anything was "proven" by this research, except the researchers' bias. It could be the autistics in question understood that others think about them, but failed to see why that should influence their actions. Maybe at least some of them even knew that you're 'supposed' to present yourself in certain ways, to have others think well of you, but preferred to be honest. It's also possible that they were simply made too anxious by the presence of the observer, a stranger, to consider anything of the sort. (I could have had any of these reactions, on different days).

 

All research like this really proves, of course, is that they still aren't asking us what we think, or why we do the things we do. If they did, like Professor Biklen, they might come to some radically different conclusions. They might even realise just how blinkered and NT-centric their thinking has been.

 

Because the prevailing assumption, and not just from autism researchers either, but also from the general public, is that when we do or say things, it's for the same reasons an NT would do those things. So if an NT would do 'x' action only out of selfishness or a lack of caring about others, then when we do the same thing, it must mean we are also selfish or uncaring. This, to me, says more about the researchers' and other NTs' lack of 'theory of mind', than it does ours. They truly, truly don't understand us, or where we're coming from.

 

Is it really such a radical idea for them to actually ask us why we do things? Professor Biklen didn't think so. We need more like him, willing to actually go 'straight to the horses mouth'.

 



[1] Biklen, Douglas (2005). Autism and The Myth of the Person Alone. New York and London: New York University Press, p 48.
[2] Grace, Elizabeth J., p96, 'Autistic Community and Culture: Silent Hands No More', in Loud Hands: Autistic People Speaking, Julia Bascom (ed) (2012), The Autistic Press, Washington DC, USA.
[3] Biklen, Douglas (2005). p 46.

Friday, 21 August 2015

Broken Bones and Handling Trauma


As some of you know, a few months back I broke my ankle. It was a bad break, requiring surgery to pin my shattered bones back together again. Three weeks later, my crutch slipped on the kitchen floor, and I fell and broke a bone in my hand as well. I spent weeks in a wheelchair, two limbs in plaster, dependent on others to do the most basic things, like meals and showering myself.

 

It's all been a huge thing to have to deal with, and has seen me out of action, both generally and writing-wise, for quite a while. However, I'm gradually getting my life back to normal, an inch at a time, and trying to get back to regular writing. So I thought I'd start by talking about how I, as an aspie, found this experience. While I can only say for sure what traumatized and overwhelmed me, I'm wondering if my experiences will resonate with other aspies. So here it goes - my list of what I found hardest to deal with.

 

Sensory Overload. I had heard that broken bones were the worst kind of pain, but I guess I didn't really believe it till it happened to me. Screaming, puking, hyperventilating, head spinning, the whole nine yards. The pain and shock, plus all the hustle and bustle of a busy emergency department, was overwhelming. And the sensory barrage didn't stop once my ankle was in plaster. There really isn't any low-sensory-stimulus time in hospital, even in the middle of the night there are lights, nurses walking up and down the corridor, voices talking, people crying out (or snoring loudly!), buzzers going, the brip-beep of blood-pressure machines or IV pumps... And the days were of course far worse. Not the ideal environment for an aspie used to spending large chunks of her time in peaceful solitude. I don't normally shout and scream when I'm in overload, but I did have quite a few sobbing sessions, then and later, and at times veered into shutdown, closing my eyes and just letting all the noises wash over me, till they echoed and blurred together and my mind blanked out.

 

Even after I was discharged, there was the ongoing sensory load of pain to deal with, one not easy to manage when you're sensitive/intolerant of many medications. There were also some things I had no idea about before - who knew, for instance, that you can get a muscle cramp underneath a cast? Or how painful it can be to have stitches under one? Or how blasted heavy and uncomfortable the damn things are, or how it seems every other muscle and joint in your body, at some point or another, complains of the extra weight and strain it has to take compensating for the ones you can't use? Nor is it just about experiencing pain in the moment. After each bad bout of it, I would be reeling, and dreading the next wave, and trying to think of ways to prevent it, and so on.

 

And then there's the sheer exhaustion factor, because even the most basic of daily living tasks takes so much longer and requires so much more energy than usual. Of course having Chronic Fatigue Syndrome didn't help things either. (Are you beginning to understand why I couldn't even THINK about writing for ages?)

 

There was also the noise and chatter of the various helpers coming and going during the day. Let me make it clear here for those NTs who might misconstrue this - it isn't about hating people, or rejecting them, or even wanting to totally avoid them, or anything like that. It's about being stressed by the inevitable noise that comes from other people being around (plus of course the social challenges, more on this below), when you're just not used to it.

 

I have to admit that some extra sensory load I put on myself, e.g. watching a lot of daytime TV, but then there really wasn't much else to do, when I couldn't even sit at my computer desk for long, because my ankle had to be kept elevated. I'm gradually trying to reduce all these sensory inputs, even foregoing watching TV at night some nights, just for the peace and quiet.

 

Emotional Overload. All the physical pain and shock was bad enough, but I feel the emotional shock was and is in some ways worse. I wince now at those TV shows - "Funniest Home Videos", etc - when they show people taking a tumble. I am terrified of another fall, especially since I broke my hand. I am also terrified of steps and slippery floors, ultra-cautious on the crutches I've only just started using again, and I suspect that even after I'm long healed, I'm going to move very differently to the confident stride and pivoting I used to have. The emotional shock goes deeper than mere physical fears however. It has something to do with losing my independence, of which I'll say more below, but also to do with a sense of violation, or loss, perhaps, of the person I was before. Sometimes, especially when I'm massaging my still-tender ankle, I want to just sit and shake and cry, as though I'm still processing what happened, all the pain and fear and helplessness and so on. I don't think I'm going to be "over it" any time soon either.

 

I know NTs experience shock on many levels too, I'm not saying they don't, nor am I saying their pain is any less real, just that I feel I, and perhaps all aspies/auties, somehow take these things in deeper, and/or just can't seem to let them go as easily as NTs do.

 

Social Overload. The last few months have necessarily seen me interacting far more with other people than I'm used to - nurses, doctors, physios, OTs, X-ray technicians, social workers, other hospital staff, ACC staff, more physios, homecare workers and their supervisors, Outpatients staff, yet more physios... the list is a long one. This increased social contact, often when I've been feeling at my worst, and hence least able to 'behave nicely', has been a strain, and has taxed my ability to communicate and get along with others. So while I'm glad I live in a country where we have a national health system and all these services in place, and I know that I couldn't have managed without them, couldn't have achieved even the degree of independence I've reached so far... still, I will be glad when I no longer need all these services and people in my life. I crave peace and quiet and solitude even more than I used to. It has left me with an increased conviction that a huge amount of interaction with the world is not for me, that I'm simply not emotionally equipped to handle it.

 

Communication Problems. I may be fluent with the written word, but orally I've always struggled to produce the right words when put on the spot, all the more so when stressed. In those first few hours, people kept asking me questions I couldn't answer coherently. (I was so thankful to my sister, for answering for me!) Struggling to frame coherent sentences, or just to find the right words to, say, instruct others as to what I want ("put the thingy on the thingy, no, there!"), has been a continuing pattern. My brain is predominantly a visual one, and I then have to 'translate' my thoughts into words, and I just can't do it instantly.

 

It isn't just about being able to string words together either - it often feels like even when I do produce a coherent sentence, people seem to take it to mean something different to what I actually meant. I've struggled to re-frame my thoughts in ways acceptable and understandable to others, ie NTs. Or, sometimes, I realise I need to explain my thought processes, as they don't know what's going inside my head, why I'm asking that particular question! (Theory of mind, anyone?)

 

Other times I feel I'm not heard at all, as though I must not be talking loud enough, or maybe they weren't really listening. More interaction with others has meant much more of these problems, more struggling to make myself and my needs heard, or to communicate more exactly what I mean, or just to get the attention of those around me, all at a time when I've been feeling at my most exhausted and least able to get my mind round the 'right' words to get my meaning across, the socially acceptable ones that is - the rude ones unfortunately come all too readily to mind!

 

I did tell some of the people I deal with I'm aspie, but there have simply been too many, and too many of them fleeting, to tell everyone. And even those I have dealt with, I didn't feel they really understood what having AS means, or what effect it has on my responses to them. They do often seem a bit bemused by some of my reactions! Thankfully, no-one seemed to get annoyed or pissed off with me, perhaps health professionals expect people to behave strangely when they're in shock or pain, or undergoing treatment!

 

Losing control of your life - like I said above, I am glad I live in a country with a national health system, social services, etc, in place, and I know I'm going to need at least some of these services for some time to come, and I truly am grateful for them, I shudder to think how I'd have managed (or not) without them, not to mention the support of my family... BUT. But there's an inevitable loss of control of your life with them. You become dependent on these services, both physically and to some extent emotionally as well. People do things to you, for you, or with you, but you're not really in charge of any of it, you don't pay the bills or call the shots, you don't really have much power over any of what's done or who does it or when or how. You can complain of course, or ask lots of questions or make requests, but the ultimate power, it is soon clear, lies elsewhere.

 

When I got this sorted out in my head recently, what I want suddenly became very, very clear to me - I want my life back. I want the life I used to have back, doing the things I used to do, on my own, totally independently, and without anyone looking over my shoulder and approving or disapproving. Without anyone even around, period! I've always been stubbornly independent and private, at least partly because I hate being criticised by those who don't understand me and my life. I want that life back. I want me back.

 

So, as soon as I possibly can, I want to take over the tasks others are doing for me, one by one, till I no longer need their services. (Actually, I kind of have to, as my support hours have been reduced! But I am wanting to do it anyway.) I also want to make sufficient progress with my healing that I no longer need treatment of any kind. I've made some headway with both of these things, but there's still a long way to go, and I feel I'm straining towards health and independence like a dog on a leash.

 

And I need to be careful I don't overdo it at this point - something I already have done a bit, I must admit. I've only just been allowed to drive again, and only recently started walking on crutches again (one of them padded). Nonetheless, I decided I needed to go to the supermarket 'just for a few things', though I can't even push a trolley or carry a basket, and haven't walked any distance in months. To say I was exhausted afterwards is something of an understatement. I overestimated my abilities, or underestimated the task, or maybe both. This bull-at-a-gate thing, not stopping to really consider what I'm doing, is very much, I feel, a product of my AS, and something I have to work on moderating, for my own sake.

 

The flip side of that is having gotten settled into certain routines, I'm now scared to change them and do something new or different, especially on my own - even when it's something I used to do, and always on my own! Fear of the can-I-do-it and should-I-do-it variety grips me, and I can hang back from even trying. I tend to flip-flop between these two states, of fear and recklessness, neither of which is really helpful. I am, like many aspies, a creature of extremes.

 

_______

 

So that's it folks, that's what's been happening for me, and where I'm at right now. Does any of this resonate with you? Have any of you ever -

a) broken a bone, or had some other health crisis

b) had some ongoing health situation or physical disability, temporary or otherwise, and/or

c) had to deal with health/social support services, for yourself or a loved one?

 

What has been your experience of them? How do you feel they've dealt with you as an aspie/autie? Did you tell people you were on the spectrum, and did you feel heard, understood, accepted, etc? Or - what? How much do you feel your experiences differed from those not AS? I'm curious as to how others on the spectrum have experienced trauma, and whatever health system you have in your country. I feel surely I can't be alone in being overwhelmed by all this sort of thing.

Saturday, 20 June 2015

Aspie Anger



We aspies often seem to have this deep-seated anger. It's usually entangled with, and comes out of, our pain, our confusion, our shame and our negative experiences of the world. We live in a world that doesn't like us, accept us, understand us, or, for the most part, seem to even want to. We are demonised, called a disease, an epidemic, brain damaged, a burden, a trial, something to be eradicated, or cold, arrogant, selfish, egotistical, rude, and anti-social to list but a few things. We are frequently bullied, harassed, abused, assaulted, reviled, ridiculed and rejected. Our families sometimes don't like or accept us, we struggle at work or school or home. And then we're told it's all our own fault.

So it's perfectly understandable, our anger. It's also understandable how it's often inseparable from our hurt and shame and confusion, and our feeling that we are somehow 'bad', just for being our autistic selves. We thrash around in it, not knowing whether to get mad at others, or to beat ourselves up. We tend to flip-flop from one to the other, sometimes not having the courage to express our rage at others because we don't know if we're in the right or not, or we're scared of them, or feel like we need them, or don't deserve better, and so on and so forth.

Often, our rage and pain become so bad, it leads to what I call "F*#k The World" syndrome. This is when the whole world seems like some ghastly, confusing merry-go-round, and all we want is to get off the ride, find some hole to crawl into and pull the cover over ourselves, screaming at the world, even if it's only in our heads, to LEAVE. US. THE %*#@. ALONE. We hate the world, and hate people, at times like that. This is understandable, and undoubtedly necessary at times, but in the long term, it's not a good place to stay. Our loneliness, fear, shame, isolation, confusion and misunderstanding of others, the tendency to 'go off into our heads' too much, get mad, lose it, and then recoil again in even greater shame and confusion and self-hatred... all these skyrocket when we're in that state, and just add to the whole mess.

I don't have any magic bullets for all this. But I do feel it's possible to change our lives. The most important thing is to accept and embrace our autistic selves, wholly and completely. This can be hard when we get so many negative messages, but sooner or later we have to free our heads from all that. This can only really be done effectively with the support and understanding of other autistics, who can provide feedback - "No, you're not crazy, I feel like that too, I've had that happen too, you're fine as you are, they had no right to do that, here's what I did", etc, and help you learn how to set boundaries with others, if need be.

The second thing is to accept, even embrace, our anger. Given how we've been treated, our anger is legitimate. We have the right to be angry, and don't let anyone tell you otherwise. It's kind of amazing, really, that we're all still alive to tell the tale. Own your anger. You have a right to it. Know that feeling anger is fine - what matters is how you express it. If you just lash out, the result is almost always bad. Channel it into self-empowerment instead.

If our anger demands it, we can get into advocating for autistics in general, to try to change the world, not just our own individual lives. This is not for everyone of course. Not everyone has the stamina or interest or ability to do this. But we can and need to come to some kind of self-acceptance. I'm not saying it will solve all our problems. But for sure being able to reject all the crap that gets shovelled on to our heads on an almost daily basis, has to go a long way. Having friends who understand, because they've been there, done that, and are often still there doing that, experiencing that, is a treasure beyond price. And actively rejecting all the anti-autistic crap, and expressing your anger in some constructive way, is even further beyond price.