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.

My Love-Hate Relationship with the World

I have become aware lately of how much I both love and hate the world. Actually I think I've always known this, but I recently seem to have become way more conscious of it.

When I say "the world", I mean "everything that we know exists", and by "love", I mean love in its broadest, spiritual sense.

I love the Universe, in all its infinite variety and splendour, the amazing beauty of the stars and galaxies and so on. I find pictures of space totally awesome, and mind-blowing, when you think about the immense distances of space. They're saying now those vast distances aren't so empty after all, which to me makes it even more awesome.

I love our planet, because it's home, and utterly beautiful too, on the whole, still. I love wild sandy beaches, heaving oceans, thundering waterfalls, soaring mountains, rolling hills and the ever-changing skies. I do what I can to take care of it all. I love the environment.

I love animals too, not in any cutesy-Bambi kind of way, but because they are what they are, and worth caring about. Pets bring pleasure to many, working and farm animals are valuable, while wild animals play their part in the ecology. They're all our responsibility.

I even love human beings, most especially my family and friends of course, but also humanity in general. There are good people in the world, many of them doing good things, things that will help the world. Even knowing that there's also a lot of people doing harm to each other, doesn't change my concern for everybody's welfare. I want the world to be a better place, not only for autistics, but for everyone.

I even feel compassion, or at least pity, for those I have the least in common with - the blandly ordinary folk whose lives seem so boring you wonder how they stand it; the mega-rich whose wealth doesn't seem to guarantee them personal happiness; the hate-filled religious fanatics and "loony right" types; and even the abusers, rapists, murderers, etc, the last two groups of whom are so far from the Light I don't know how they'll ever find their way back. Yes, even them. (I avoid them like the plague of course, but I still pity them from afar.)

So I love the world.

But I also hate it.

And a lot of that hate, or at least loathing, dislike, exasperation, anger, rejection, etc, is connected to the reasons I love it.

I hate the idea of humans stuffing that beautiful Universe up. Even though, as an avid sci-fi and fantasy fan, I've enjoyed many stories of space travel, I kind of hope it never happens in reality. After all, colonising different parts of our own planet didn't really improve things all that much, did it? It simply created a whole new raft of problems.

I hate how so many people, especially those in Big Business, seem to be racing each other to pollute and generally stuff up our planet, would it really be so hard to be environmentally responsible? We've only got one planet, people!

I hate how some people treat animals. I'm not sentimental, I'm not even a vegetarian, and I know you have to assert mastery over animals (think of dog attacks, or a 500-pound bull trampling a human into the ground, and you'll understand why), but it doesn't need to be done with cruelty. Mistreatment of animals upsets me deeply. And I don't like either the whole 'performing seal' thing, or dogs on cushions with bows in their hair, and so on. The forcing of animals against their true nature seems to me a travesty of dignity for the animals concerned.

I hate the sensory barrage of the world. The whole blaring, glaring, flashing, whirring, humming, roaring, reeking, heaving, seething, frantic, chaotic mess of it. I hate how bloody overwhelming it is, and how pervasive it is. Sometimes I wish it would just STOP. Even just for a little while.

I hate how difficult social contact is in general. It feels like a minefield I have to tiptoe through, for fear of saying or doing the wrong thing, and getting people mad at me. I hate feeling I have to choose between pretending to be NT or offending people with my bluntness or 'weirdness'. And sometimes I end up offending them anyway, or they sort of withdraw from me, or give me funny looks. I hate how tired I am at the end of any day spent having to 'make nice', and how distant I feel from, and how jaundiced I feel about, humanity in general by then, especially when I know that most of them are really not bad people, and that it's me, not them. I hate how shitty that makes me feel.

I hate the emotional games some people play. They seem to love to spin emotional webs and jerk others around. Why can't they be honest? Why do they have to screw with people's heads? What on earth do they get from it? It leaves me feeling confused, lost and like the ground is shaky beneath my feet. And then there's all those so-called 'nearest and dearest', with their silent demands and unspoken expectations, which you can't possibly know, not being bloody psychic, and yet they feel perfectly entitled to punish or pressure you when you don't meet those expectations. I hate how in relating to such people, I used to feel like I was lost in a swamp.

I hate how some people never say what they really mean, using various kinds of roundabout talk, clich├ęd rubbish or New-Speak instead. This seems particularly prevalent among politicians, bureaucrats and similar authority figures. An offshoot of this insanity is when these same people put in place policies designed to make them popular, but which actually harm those most in need. You can usually spot these policies by the weasel words used to justify them.

I hate how hard it is to navigate through the world, and how little help many people will give you, especially if you are in any way different. Dress differently, look differently, behave differently, be obviously homeless, poor, an immigrant, disabled, or anything else outside the norm, and most will simply look away, or dump on you for being whatever you are. I hate how judgemental of difference many are.

Most of all, I hate how so many are so cruel to each other, the damage they do, the wars they start, the oppressions they perpetuate, the 'isms' they create and keep going. I especially hate the jeering, sneering, sniggering, name-calling, derision, bullying, beating, abuse, spirit-crushing, cold-shouldering, forced normalisation and so on that is perpetrated on autistics, but I also hate how anyone else who is 'not normal' is treated. I hate that people think that it's okay to do these things to people, especially those who are most vulnerable.

I hate how if you don't or can't or won't "fit in", then you're cold-shouldered, excluded, and if you finally withdraw from it all in overloaded confusion, your absence probably won't even be noticed. The world is a cruel place, and I hate it for that.

So I hate the world. And I don't know what to do with that hate, or how to reconcile it with that love.

How do you feel about the world?