A Restless Spirit

This is going to be a more personal blog post than I usually do, and I’m uncertain how many others on the spectrum, if anyone, would identify with some of this.

Anyway, what’s been happening for me lately is the return of a perennial problem – a kind of deep-down restlessness. It’s afflicted me many times in the past, from childhood on, but I’ve never figured what it is I really want. I’ve tried assuaging it with this and that, speculated on what it might be from – winter blues, needing to be more creative, meditate more and better, go for a trip somewhere? - but with never any real answers.

I do know, or at least think, that it arises out of a kind of split or duality in my nature, two forces pulling me in totally different directions – and that have also been there my whole life.

On the one hand, is the side of me that likes order, tidiness, regularity, routine, everything fixed in its place, my life lined up like centimetres on a ruler. This side of me, as you might guess, is intrinsically linked to my autism. It’s the force that sees me religiously keep to my daily rituals, tidy my drawers so neatly that my mother once joked “are you sure you’re my daughter?”, and clean so hard it’s a wonder I don’t rub the pattern off things.

It’s also the part that gets flustered if things don’t go according to plan, or if something is out of place, the part that gets upset, or even panicky and close to meltdown, if there are serious disruptions to my routines and order. In recent decades, it’s the force that has driven me towards a semi-reclusive lifestyle, shying away from the world and curling in on my order like a wounded creature crawling into shelter. And in a sense, I was, and am. The world is messy, chaotic and unpredictable, and not nice to autistics. I’ve been damaged, as many autistics have been.

I’d be willing to bet many autistics, by this point, are nodding their heads and going “uh-huh, yep, I so know what you mean!”

But there’s another side to me.

It’s the side that craves stimulation, excitement, variety and yes, even change. That, every now and again, longs to break out of the box I’ve created for myself, this half-life that isn’t really a life at all, grab a few essentials, jump in my car and drive somewhere I’ve never been before, visit towns or even countries I’ve never been to, see sights I’ve always longed to see (Eiffel Tower, anyone? Stonehenge? No?), and do things the orderly side of me would look at in horror.

It’s the side of me that even remotely contemplates a relationship, even if it’s at some distant time in the future – something my other side shies away from like a nervous horse. It’s certainly the side of me that wants to see more of my aspie friends, be more ‘sociable’, have more of a life, in short.

It’s also the force that compels me to write, the side of me that, more and more, wants to grab the world by the throat, yell “listen to me!”, and tell them what it’s really like, being autistic. That wants to shout from the rooftops the truth of my life, and that of others on the spectrum. That wants to go back out into the world as a strong, independent and authentic aspie, and tell the world to Deal With It. Whereas my other side would prefer to stay cowering in my little cocoon of safety, hoping no-one will even notice I’m here.

The tension between these two forces within me is powerful. My orderly side would be quite happy living a near-monastic existence on some remote hilltop or plateau. My excitement-seeking side, however, would prefer the beating heart of a city. Tugged this way and that, by this need and that, I lurch from isolation to interaction and back again. I go away for a few days, enjoy myself, but then gratefully flee back home into my orderly little shelter. (Or should I say shell?) I go to an event, and then come home and crawl into bed for a couple of days. And so on.

At different times in my life, one side or the other has ruled. In my younger years, for example, my more adventurous side pushed me into social movements like feminism and anti-racism, fighting for the principles I believed in. I waved placards, chanted slogans, marched and demonstrated to stop the Springbok tour, defeat sexism, deny nuclear ships a welcome on our shores, return Maori land, and generally demand a better, fairer world. I was an ‘angry young woman’.

But then I started getting sick, and disillusioned, and heartbroken. So the ‘order’ side of me began to assert itself in a slow withdrawal from the world. And since exiting a very toxic relationship nearly twenty years ago, it’s been winning hands down. But now I feel like I’m stagnating… so the other side of me is breaking into flower again.

Overall, it’s definitely time for a weather change in my life. My autism and my CFS do pose limitations, it’s true, as does my sheer lack of funds. (Guess Stonehenge will have to wait a while.) But I do want, somehow, to have more of a life, live more authentically and more vibrantly. Somehow, I have to find a way to do this.

Watch this space.

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.

Update!

I know I haven't posted much this year, I do apologise if you've been checking fruitlessly. It's not been a good year for me, the latest thing is that on the 31st May, I fell and broke my ankle rather badly. This has meant I have had difficulty getting to an internet connection to upload new posts as I don't have internet at home. It also means I've been even more short of "spoons" than usual. This doesn't mean I haven't been writing though, and I hope to get some new posts up soon. Keep the faith people!

Just a Word About Comments and Links...

I've had quite a few comments lately, that include links to the commenter's own website/page. I'd just like to point out that these are treated as 'spam' by blogspot, and tend to get lost! I often don't find them till much later, and with some of them, I'm not sure whether they are truly spam or not, so tend to delete... So basically, if you want to see your comment approved (I moderate all comments), please DON'T include any links!

Also, because of slow/cranky computer issues at home, it's sometimes a day or two (or three!) before I can get around to moderating comments. So please be patient, and don't think I am snubbing you. That's not the case at all. :)

Things I Don't Understand - Number Three

Every now and again, when I tell people I’m a writer, the response is something like “oh but there’s no money in writing, you know.” Always with an air of hasty concern, like someone seeing you heading for the beach and at pains to warn you there have been shark sightings. I always have to restrain myself from saying “Noooooo! Really? Gee, I’ve only been writing for most of my life and I guess I never noticed there’s no money in it, thank you SO much for enlightening me, I shall now abandon writing and go off and be a stockbroker instead.”

….DUH.

Well, what do such people expect, when they say things like this? Do they a) really think I’m not aware of this (in which case they must think me stupid); and/or b) think I’m in it solely for the money? (Perhaps that’s their attitude towards their work – they do it solely for the money, in which case I pity them.) (And I have to say here, this has even come from other aspies once or twice, it’s certainly not limited to NTs.) My feeling is, people like this don’t really understand the creative life, or creative people, or what drives us to create. Perhaps they’ve had to stifle their own creativity, or had it stifled for them. Perhaps they too would like to write, or paint, or whatever, but were told when young that it was an ‘impractical’ choice of career, and they should be nice, ‘responsible’ lawyers or teachers or secretaries or businesspeople instead. Perhaps they’re scared of creativity, seeming, as it does, to ‘come out of nowhere’. Or perhaps their ego drives them to really think they’re doing you a favour with such ‘warnings’.

Whatever the reason, it’s very annoying. Yes (she says wearily), like most writers, I know that the chances are that I won’t make it to the top of the bestseller list (we always dream of being the next J.K. Rowling or whoever, but we don’t expect it to happen). I don’t write because I believe I’m gonna ‘make it big’, however - I write because I am a writer. It’s what I am, what I do, what I now know I was born to do. It’s the only thing that doesn’t make me feel like I’m wasting my time on this planet, the only ‘work’ that makes me feel in tune with my deepest spiritual longings. If I don’t write regularly, I begin to feel blocked and spiritually ‘constipated’ and ‘stuck’ in my life, I start to get depressed and screwed up in my head, in short, I become one very, very unhappy aspie. So even if I never make a cent from my writing, I will still write. Even if I won a fortune on Lotto tomorrow, I will still write. I expect to write till the day I die. It’s not a career, in other words, it’s a vocation.

On top of this, there is my own particular situation. The truth is, I don’t actually have any other ‘marketable skills’ to make a living with. The years of illness caused by my CFS means I didn’t get the chance to acquire the qualifications, skills, or work experience necessary to find employment in today’s tough job market. Add in ageing, various physical infirmities and my AS, and I’m probably unemployable. That doesn’t mean I don’t think I could do some jobs if given the chance, it means it’s unlikely I ever will be. So writing, even if it only ever earns me pennies, is ‘It’.

Moreover, people who say there’s ‘no money’ in writing (or any other creative endeavour), fail to understand that when you’re on the bones of your proverbial, any sum of money, however small the amount, is to be grabbed at with both hands, even sums that others would think negligible. $20? That’s a trip to the movies, or a night I don’t have to cook. $200? Some much-needed new clothes. $2000? A new computer, or getting my teeth fixed. And so on. When you’re poor, every cent you can get it is worth it. Every cent.

So those who try to warn me that ‘there’s no money in writing’? I really, really, don’t get such people. Is it that they think everything is or should be solely about acquiring huge amounts of money – and if something doesn’t promise that, then it’s not worth it? Is that how they see the world, the goal/s they think everyone should be pursuing? Are they that desperate, or greedy, or cynical, or – what? Why should (pots of) money be the sole criteria or objective in life, and/or the sole reason for choosing to follow a particular profession? Why do they feel they ‘have to’ warn me against being creative? Where, in short, are such people coming from?

I truly, truly, don’t get them.

A Review of the Loud Hands Anthology

I’ve been slowly working my way through the Loud Hands anthology, and I have to say, it’s pretty good. Some might be thinking, of course you would say that, your writing is in it! Well I leave it up to others to judge my writing on its own merits or lack of them, what I want to talk about is the other writings in the book.

There are so many good pieces here, I hardly know where to begin. Jim Sinclair’s historical and ground-breaking piece, ‘Don’t Mourn For Us’ (p13),  forms a good intro - written in the early 1990s, yet it’s just as relevant today. Then there’s his other seminal piece, ‘Why I Dislike “Person-First” Language’ (p152), also from the 90s, and also just as relevant.

There’s also Ari Ne-eman’s retrospective on how ASAN got started (p 66), where he states that one of the reasons for its beginning was that “good intentions and love were quite frankly just not enough… When people that you talk about, or set policy on, or conduct research regarding, are not in the room, even good people feel licensed to say horrible things. You cannot help people through pity and fear.” (My emphasis, as it’s something we should never forget, or let others forget.)

Nick Walker’s ‘Throw Away the Master’s Tools; Liberating Ourselves from the Pathology Paradigm’ (p 156), is a little more ‘academic’ or ‘intellectual’, and some may not like it for that reason, but as someone who came out of the feminist and anti-racism movements in the 80s, ‘the master’s tools’ is a phrase that has great resonance for me. It’s basically about how we need to step out of the dominant mentality, in this case the ‘autism as pathology’ mind-set, and create a new frame of reference, and new language, to describe our reality. Language is power, and changing the language is the way to empowering ourselves. I feel it’s a very important piece of writing.

Julia Bascom’s ‘Quiet Hands’ (p 119) is another important piece – even though I’ve read it before on her blog, it still gets me every time. Her ‘This is Why’ (p 134) also moved me to tears, as did Amanda Forest Vivian’s ‘They Hate You. Yes, You” (p 124). They also left me feeling angry and anguished about what’s been done to us, what’s still being done to us, as did Julia’s ‘Grabbers’ (p 137), and Shain Neumeier’s ‘Inhumane Beyond All Reason’, on the terrible things done to autistics and other ‘different’ people at the Judge Rotenberg Center. There’s so much out there that needs changing, and Zoe Gross’s ‘Killing Words’ (p 163), is a potent and chilling reminder of why we need to change things.

The most important thing about this book, however, is not so much the individual pieces, fine as they are, but what the whole book represents. Most autism books I’ve seen or heard of so far are either autobiographies by autistic people, books for parents of autistic children, or ‘self-help’ books for autistic people, often by those who are on the spectrum themselves. There’s nothing wrong with any of these, but I do feel Loud Hands goes a step further than all of them. More obviously ‘political’, It collects and collates important existing advocacy pieces, brings in new ones, and presents a vision of where we are, where we’ve been, and where we are going. It’s a new type of writing ‘about’ autism, one which has been slowly nurtured in blogs and social media groups and forums for quite a few years now, but this is the first time it’s all been put into a book, and published, and put ‘out there’ for all to read, and in doing so, it makes a powerful statement about us.

I believe that this book is our ‘Declaration of Independence’, our Communist Manifesto, our Long March, our October Revolution, our Stonewall Riot, our Our Right to Love, our The Female Eunuch, our ‘burning’ of bras (actually just publicly dumped in a trash can at a protest outside a beauty contest, but the media has never let feminists forget it), our Sisterhood is Powerful, and any other powerful event or book or document of liberation or explosion of collective frustration that you can name, that started some ball rolling, outlined some group or movement or country’s priorities, allowed one oppressed group or nation or another to redefine themselves, and get, or begin to get, their oppressor’s foot off their neck. I believe that some day Jim, Julia, Zoe, Amanda, Nick, Ari, et al, will be seen as our George Washington and Founding Fathers, our Martin Luther King and Malcolm X and Audre Lorde, our Shulamith Firestone and Robin Morgan and Germaine Greer, our Susan B. Anthony and Kate Sheppard and Pankhurst sisters, our Gandhi and Steve Biko, our Harvey Milk and, well, anyone else you can think of that did so much for their people, their brothers and sisters, their race or gender or sexuality or nation.

It’s that important. Read it.

Loud Hands Project

I've just today found out that my submission for the Loud Hands Project, entitled 'Loud Hands, Loud Voices', has been accepted. I am going to be published alongside some of my 'heroes', people like Jim Sinclair, Amanda Forrest Vivian, etc. Wow! I'm really ecstatic!

And Yet Another Bit from my Book

Another excerpt from my book. This is probably the last one I’ll do, as I need to get on with actually writing the rest of it!!

I am twelve years old, drifting around the school playground at lunchtime. Nearby, some kids want to play a game of Four Square, but there are only three of them. They invite me to play. It’s a simple game, and at first all is well. But then, as soon as a queue forms of other kids wanting to play, the original players turn to me, and tell me, “You can go now”. I back off and walk away in slow confusion, suddenly aware of two things – I have been used, and I Am Not Wanted.

I wish I could say this was an isolated incident. Alas not so. At primary school, I had been, if not exactly favoured, at least not totally excluded. But my peers were growing up fast, their interactions becoming more sophisticated and complicated. As a child, I had been drilled in some basic rules of social interaction by my parents –hello and goodbye, please and thank you, wait your turn and don’t stare at people. These were no longer enough, and my ‘difference’ was becoming more obvious. Around me, girls were sprouting breasts and hips, and becoming interested in boys and flirting, pop groups and film stars, makeup and fashion. I was still reading Enid Blyton’s Famous Five books, wishing I could find buried treasure and secret passages, and wanting to be George, the rebellious tomboy (I thought the other girl, Anne, was wet). I was also late physically maturing, which didn’t help much.

It also didn’t help that the intermediate took students from several primary schools, and almost none of the kids I had spent the last six years with, who were used to me, were in my classes. My new classmates didn’t know me, and rapidly made it plain they didn’t like me much either…

… One big challenge at intermediate, and secondary school also, was sports. We’d had to do them at primary, but little prowess is expected of young children. By twelve or fourteen, however, it’s expected you will know at least a few of the rules, and have acquired at least a little skill. Not me, alas! I had never been particularly well co-ordinated. I’d taken forever to learn to tie my shoelaces for instance, my grandmother – she of the lush garden – had finally shown me, step by patient step, how to do it. I’d done ballet for several years, but I would soon give it up, as I was slowly realizing I would never be much good at it. Unfortunately girls then weren’t allowed to play rugby, which I might have enjoyed because of the backyard games with my father; we had such delights as netball, cricket and hockey instead. Netball I found frustrating, cricket I’ve always rated one notch above watching paint dry, but hockey was just a nightmare. One PE class, standing on the field in my usual daydream, I suddenly realized the ball was headed straight for me – and in the wake of it, a pack of girls were thundering down on me, sticks raised, faces murderously grim. SQUAWK! I whacked the ball wildly away from me – one of the few times I actually managed to hit what I was aiming at – of course it was in the wrong direction and my teammates yelled at me, but I didn’t care. I was simply relieved not to be a target anymore. (And they said girls couldn’t play rugby because it was ‘too rough’. Go figure.) But the worst thing was not understanding why so many people got so wound up about sports, yelling out things like get him! Kick it! Run with it!, and generally acting like it was the end of the world if ‘our’ team lost. It’s only a bloody ball! I wanted to yell. Why did they get so excited? Other things were far more important, in my view.

And another excerpt....

Been a bit busy lately to do any writing, but here's another excerpt from my book…

I tried to perceive some pattern or order in what seemed a chaotic world, or failing that to at least create some small order in my own environment. As a little girl, I had played dolls tea parties with other girls – and been very disconcerted when they actually wanted to play with the dishes and cups I had so neatly arranged! I stopped playing dolls tea parties. Something similar happened with the ‘dress-up’ bag of adult cast-offs my sister and I shared, I enjoyed the actual dressing up and ‘arranging’ of costumes more than the playing. In fact, I wasn’t really able to think up these free-flowing, ever-changing dramas as the other kids did, and I tended to simply follow their lead. Once, all dressed up, I pranced out of the bedroom and around the house, wobbling in my too-big high heels, to the adults’ amusement. I remember smiling at their laughter, and anyone looking on would have thought me ‘normal’. But my smile was due to relief, not shared pleasure – for once, I had ‘got it right’.

Outside, I climbed trees, and played chasey and hidey-go-seek and Cowboys and Indians with my siblings, and would have seemed ‘normal’ enough then too. But if others wanted to change the ‘rules’ of these games, I would complain furiously. “You’re supposed to stay dead!” Once I ‘knew’ a rule, I did not want it changed! Changing rules, actually any kind of sudden change, made my stomach go all wobbly. As with dressing up, I was unable to ‘improvise’, or truly meld with others. I could only follow rules, or the lead of others – or be the ‘boss’! And if I was ‘in charge’, I was very bossy, rigidly so.

I also loved to play rugby with my siblings and our father at home. Strangely enough, though I was never any good at school sports, somehow I could ‘do’ rugby. I loved the hard running and tackling. It seemed to meet some need in me for whole-body activity and physical contact. Other times, my father would wrestle with us, all of us piled onto him, trying to hold him down. I loved this game, and was probably the hardest ‘wrestler’. For all of this, and my preference for shorts and trousers over skirts and dresses (to me they were simply more practical), I was labelled ‘a bit of a tomboy’….

…Sometimes I read fairy tales, and there I came across the idea of ‘changeling children’, swapped at birth, and wondered for a while if I was one. But I truly couldn’t imagine other-worldly creatures popping over to New Zealand to grab a child! When I was a little older, I wondered if I was adopted, if that was why I felt so different to everyone around me. But simple logic (something I believed in even at this tender age) told me this couldn’t be true either, and I eventually gave this idea up too. There was no explanation for my ‘difference’. The labels still kept coming though – I was ‘away with the fairies’, ‘lost in her own little world’, a ‘day-dreamer’, a ‘strange child’, and more, as others tried to grasp my ‘otherness’.

Another excerpt from my book...

Another excerpt from my book…

Just how I was ‘different’ only slowly became apparent to me. Too often, I would say things that to me seemed utterly normal and unremarkable - and anger, scolding, ridicule, jeering laughter or a shocked silence would follow. I was saying things formed by my particular ‘logic’ and thought processes, but I had no idea (and nor did others) of just how different these were. Hence, I could never anticipate what would bring this all this down on my head, or understand why it was so wrong. All I knew was it somehow was wrong, and me with it. There was nothing I could do but cringe and wait for it to be over. Over and over again, I would inadvertently break social ‘rules’ I didn’t know existed until I was told off for violating them. There seemed to be so many things that others somehow ‘just knew’, and which I was also expected to ‘just know’, and didn’t – until I made a social blunder. One day my mother was scolding me, “You should have known not to do that!” (whatever it was), and I protested, ”but how could I have known, if you didn’t tell me!?” We were both puzzled, but I was distressed as well, and horribly, horribly confused.

I didn’t have a name for this pain, anymore than I had a name for my other feelings. If someone said to me, ‘why the sad face?’, or ‘you’re happy today!’, I would feel with a shock of surprise, ‘oh! So this is happy, this is sad’, etc. I say I ‘felt’ this, because I didn’t think with words at that age, my thinking was more like a series of flickering images, or surges of wordless feeling like whales surfacing from my personal depths. I wouldn’t think in words till I was a teenager, and even now a lot of my thinking is visual – despite my facility with language, images are my ‘native tongue’.

Part of my social difficulty was, I think, due to being unable to connect and compare, and hence generalise and learn from, my experiences. Occasionally, after I’d messed another situation up, someone – usually my mother – would say to me, “but you should have known how to do (x), from (y) situation!’ I’d always be very surprised – it had never occurred to me that the two were in any way connected. Such skills as I had were, as Charlotte Moore so aptly puts it, “an archipelago of islands scattered across a sea of confusion… [not] even within hailing distance of each other.”[1] And though I was a voracious reader, I couldn’t ‘connect up the dots’ of any of the knowledge about the world I was accumulating either; it was simply a whole bunch of disjointed facts.

---

[1] Moore, Charlotte; George and Sam (Penguin, 2005), p 37.

An Excerpt From My Book

I’ve not been up to writing anything for a while, as I’ve been not in the best of health. I’d like however to share with you some excerpts from the book I’ve been writing about my life with Aspergers (or trying to write, rather!). The first excerpt, from the beginning of the book, is below, I’ll do more later.

I am about seven years old. I am standing in the passage in front of the bedroom I share with my sister. As usual, I see everything in vivid detail, the grains in the wooden boards under my feet, the busy-ness of the wallpaper, the brush strokes in the paint on the door frame, the dead fly on the floor in the middle of the doorway. But today also I suddenly see, become aware of, something else – I am different. How, I don’t know, why, I don’t know, and what the words are for it I don’t know, but I know I am different. And I experience this difference as a lack, something others have but I don’t. And I know I need to hide it.

This is the story of my life.

It is a life that has taken many twists and unexpected turns, seen assorted ups and a large number of downs, but the one thing that has dominated and defined it overall is the quest to understand, to make sense of a world that I frequently found confusing, frightening, overwhelming and chaotic; to make sense of my life and of myself, or, failing that, to simply find some small space in the world I ‘fit’.

This journey of mine began in the depths of 1950s suburban Auckland. It was, and is, New Zealand’s largest city, but this didn’t mean, in those days, that it was forward-thinking, enlightened or even especially cosmopolitan. It still had a lot of the flavour of a provincial small town, like most of New Zealand at that time. Understanding of, let alone tolerance for, neurological differences of any kind was in its infancy elsewhere in the world, and non-existent in this ‘last, loneliest outpost of civilization’. What was valued however - an almost unspoken rule that even I managed somehow to absorb - was conformity, sameness, ‘not sticking your neck out’, not standing out from the crowd, being ‘just the same as everyone else’.

Not that there were many clues, at first, that I was different to other children. I was a quiet, ‘good’ baby and toddler, ‘not much trouble’. My mother says that, as a baby, I did have a tendency to gaze around me with a wide-eyed astonished look, “as if you were wondering whether to stay or not”. And the few times I got into mischief as a toddler, it was usually of the solitary kind, and to do with exploring my world too closely. One of my aunties still laughs over the time when, put down for an afternoon nap at her place, instead of sleeping I apparently took to exploring the blinds. One blind had a frayed edge, which I pulled, and pulled, and pulled…. By the time they came in to get me, there were only a few inches of blind left at the top, and a pile of threads on the bed beside me! Another time, at this same auntie’s place, when a search was made for me, I was discovered quietly up to my little elbows in a large jar of home made jam. I was also a bit slow to talk – though I said my first words at about a year, I didn’t talk in proper sentences until I was about three, and my sister started talking.

But I was my parents’ first-born, and with three more (and less quiet) siblings following in the next six years, my mother had her hands full. If I seemed to give little cause for concern, she was probably relieved. I grew into a ‘quiet’, biddable child, considered ‘shy’, and ‘in her own little world’.

This is how others remember me. My own memories of those early years are somewhat different in focus. I had little awareness of other people or their feelings, and if any non-verbal disapproval was sent my way, I was oblivious to it. My curiosity was directed towards my physical environment, not those around me. My earliest memory is not of any interaction with people, but of a plant in the hallway of the house we moved into when I was three. I have the impression I had left the adults behind in the kitchen and gone off alone to explore – I didn’t yearn for company while I was doing this, nor did it occur to me, ever, to run and share what I found. I was simply absorbed in my own doings, lost in my little ‘bubble’ of a world, aware of others only as and when they impinged on that bubble.

It was a kind of selfishness I suppose, but not a conscious one – I simply didn’t know other peoples’ feelings existed, so sometimes I would trample blindly over them….

Another Article published!

http://www.suite101.com/content/your-first-visit-to-new-zealand-a382487

 I've finally gotten around to publishing another article on Suite 101, this one's for you 'foreigners', a bit of a guide for anyone likely to visit New Zealand for the first time soon (maybe for the Rugby World Cup??) or just wanting to know a little more about us Kiwis.

Hope you like it!

My Outlook on Life

I’ve been meaning to do a piece on my spiritual views for ages, and I will get to it soon. But first I want to say something about my general outlook on life.

The central fact anyone needs to know about me, is that I am a spiritually-orientated person. The thing I desire the most is to be One with The Infinite. Because nothing else beats that feeling, no high or thrill of any kind. The Love of the Infinite is the most powerful force in the Universe, and if you know that Love, you cannot but help love Its creations, human beings. Or perhaps it’s more accurate to say, you cannot help but feel compassion, because humans in general are in a mess. Wars, oppression, poverty, violence and difficulties of all kinds, from large to small - we all know what a sorry state the world is in. And most of the pain is caused by humans themselves, on themselves or other humans. You have to either loathe them or feel sorry for them, and I prefer the latter. Because to allow bitterness, prejudice and intolerance into my heart, takes me away from God, and I’m not going to allow that to happen.

I admit, in my earlier years I often felt that bitterness, and even sometimes edged close to that intolerance and prejudice, because of the pain that is the inevitable result of living with undiagnosed, unknown-even-to-me Aspergers. Those on the spectrum, especially those over thirty, will know the struggle of which I speak. But though I often floundered in confusion and angst, I couldn’t ever sustain negativity, not completely, and never for long, it simply isn’t in my nature. In the end, burnt-out and worn-out from trying to be ‘normal’, I knew I had to take a different approach to life – or die. It was that stark. I couldn’t go on any longer the way I had, I was beyond even ‘running on empty’, I was bone-dry, not a drop left in the tank. It was at that point I sought out a spiritual centre and learnt meditation, consciously stepping onto the spiritual path, which I’ve been on ever since (admittedly with a good deal of meandering!). Over a decade of meditation, prayer and ‘living with God’ has not only given me tools to cope with the world, it’s helped me to understand this crazy old world better – and to feel compassion for it. I see the pain, I see the troubles, and my heart can’t help but be moved. It’s who I am, what I am.

So I feel this compassion, and naturally I want to help. Well, I’m still an aspie, and I can’t cushion things much – I speak the truth, about how I see things. But here’s the thing – I want that truth to be a way by which people are helped. As a writer, words are my stock-in-trade, and I do my damndest to use them wisely; to help people see their own Truths, to clarify their lives, understand themselves and others better, simplify complicated situations, and generally make the world a better place. (Because who the heck wants it to be a worse one?) I see this as a responsibility that comes with having a gift for using words. So though I may at times seem forthright, even blunt, it’s not with the intent to hurt, but rather with the object of ‘cutting through the thicket’, unravelling the complicated, and laying bare the heart of the problem. Sometimes, yes, this is painful. But only when the problem is clear, can people actually do something

about it. If I can’t find the right words to help someone to see their way, or if I feel unclear in myself about what’s happening, then I try to refrain from saying anything (or at least until something does become clear). I remind myself that no-one but God can know everything. (And in case you were wondering, yes, I also do this ‘cutting through the thicket’ on myself. How else do you think I learnt it?)

It may seem arrogant to some, this belief that I can help others simply through my words. Let me be clear on this - I have no illusions (a kind of wistful hope, maybe, but no illusions), that I can, simply by my words, ‘wave a magic wand’, and utterly transform people’s lives for the better. Sometimes my words are rejected, resented, or ignored. Fine, no-one has to listen to me, and I’m not the fount of all wisdom. (If I was, I’d have handled my own life better!) But I do have certain understandings, mostly gained the hard way, and if I feel I can help, I will say something. And more than that, I seek to be a channel for a Greater Wisdom – something that doesn’t come from me so much as through me. And sometimes you can sort of ‘plant seeds’ in people’s minds, which might grow and flower in time. Or just enable them to look at things a different way, empower them to make their own changes. Others have done this for me in the past, I’m simply passing the favour on.

So my philosophy can be summed up basically as – to do good whenever I can, or at least to do no harm. I figure there’s enough negative energy and aggro in the world already, and I don’t want to add to it. I want to help people when I can, and if not, then refrain from making things worse. Sounds simple, perhaps even ‘woolly-wafty-liberal’, but it’s actually pretty radical, and not always easy in practise. I admit, I have my bad times. Times when I feel down and rejecting of the world for a while; or times I curse out a driver who cuts me off in traffic and give Jesus Christ a new middle name (though this is mainly fear, because my driving reactions are not that fast, and drivers who drive recklessly or carelessly scare the crap out of me); and other times I get stressed and snap at someone, or I say the wrong thing – even when it feels right - and hurt someone’s feelings. And still other times I know there’s probably something I could say, but I’m too emotionally scattered or stressed to find the words, or the energy to say them. There are people I fail. I’m human, I have shortcomings and make mistakes and blunders like anyone else. And I’m also aspie, with all that that entails.

But the main thing is that I try. I have this approach to life, this outlook, because it’s the only way I can live with myself, the only way I can stay close to The Infinite, the only way I can be a spiritual being and a person with Aspergers, and not succumb to pain, bitterness, and the downward spiral. It’s the only way I can live. Literally.