Monday 24 October 2011

Why I'm Glad We Won the Rugby World Cup

Today has been a day of celebration for New Zealand, our team the All Blacks having won the Rugby World Cup last night in a nail-biting close final. I’m very glad they’ve won, though not for the reasons most might think.

For the most part, sport bores me, as it does most aspies, but rugby is about the only game that can hold my interest for even a little while. But then rugby is more than ‘just a game’ in New Zealand, it’s practically a religion. I’d be willing to bet more people play and/or watch games than go to church on Sundays. It’s a huge part of our identity, along with the haka that goes with it, and we’re unarguably the world’s best, but haven’t been able to win the ultimate trophy since the first tournament in 1987, twenty-four aching years ago. With heaps of heartbreaks and disappointments along the way, this win has been a long time coming, but that’s not really why I’m glad.

Our boys have fought a hard fight to win, all through the stages of the tournament, and especially in the last part of last night’s game – the French, only one slim point behind, threw everything they had at the ABs in the last nerve-wracking half-hour, when it would only have taken one try, one well-aimed penalty kick or drop goal, for them to win. Our team held firm, and the win is a well-deserved one, that the country and the team can be proud of. But that’s not why I’m glad either.

We’ve shown the world how a football tournament should be held - with a seven-week long festival of rugby, and (mostly) it’s been well run. The whole country has really gotten into the spirit of things, with flags and signs of support everywhere. Small towns up and down the country ‘adopted’ foreign teams to support. Visitors and foreign teams have frequently commented on how ‘friendly’ and welcoming New Zealanders have been to them. And I truly believe most of the country has been behind ‘our boys’, hanging out for that long-awaited victory. I’ve never seen anything like it. Even this sports-phobic old aspie has been caught up in the excitement at times. I’ve finally begun to understand how sport can (at least sometimes) be a Good Thing. (Wow, never thought I’d say THAT!)

I’ve also seen on TV how, in the stands or the streets, supporters of opposing teams stood side by side, or gave each other a good-natured ‘ribbing’. But no violence, apart from a few flags ripped off cars early on. Compare this, for example, with many European football (soccer) matches where supporters of opposing teams have to be forcibly kept apart not only during the game but before and after as well – even to the extent of having them enter and leave through different gates. Nothing like that here. But none of this is why I’m glad either.

I’m glad we won because we need the boost to our national morale. New Zealand has had a hard time lately. Last year, Canterbury was hit by a huge earthquake, then there was the Pike River mining disaster in which 29 men lost their lives, and then we had another Canterbury earthquake in February which saw 181 people killed, and the guts torn out of Christchurch, our second biggest city. More recently, there’s been the Rena oil spill disaster – a story not over yet – and of course in the background have been economic stresses similar to that which many other countries are suffering. We’ve been kicked and kicked hard, people are struggling, people are down, people are deeply suffering. Some have been wondering, how much more can we take? We all needed this win to boost our spirits and our pride in ourselves as New Zealanders, to prove to ourselves we can overcome diversity and come out on top, that we can climb back out of this hole and stand proud again.

Did I say I was glad we’ve won? Actually, I’m bloody ecstatic!!! Yee-HAH!!!

Saturday 22 October 2011

An update on 'New Words Needed'

A while back I posted that we need two new words, one of which is  to describe discrimination/negative attitudes towards/against us. Recently, i found a new page on Facebook - 'Wipeout Neurophobia Now'.

I thought - YES!! Neurophobia! Perfect! Just the word I was looking for. So that's the word I will be using from now again, to describe the neurological equivalent of homophobia. Thank  you, whoever invented the word!!

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….

Monday 10 October 2011

A Bouquet for the OTHER type of 'autism parent'

We all know the type of ‘autism parent’ we love to hate (or at least pity). The kind that goes in for the ‘autism as monster’ thing. Autism as the ‘stealer’ of their children. Autism as ‘tragedy’, autism as a thing to be ‘fought’, to eliminate, to ABA and ‘social skills’ and diet and train etc etc the hell out of their children. The kind who grab at anything and everything that promises to make their child ‘indistinguishable’ from their peers. The ones who can’t bear that their child should be anything less than ‘normal’.

Then there are the ones (usually in or running autism organisations that actively promote the above attitudes) who actively disparage those of us who dare to challenge those ways of thinking – the ones who refer to us as a ‘deluded minority’, crazy or sick, or ‘not really autistic’ at all – the ‘You Can Talk, So You’re Not Autistic’ parents, who accuse us of making their lives more difficult, of being against all training or therapy methods, and wanting to leave their children to ‘drown’ in their severely autistic states.

And also the ones (seemingly more benevolent, but just as contemptuous of us, in their own way) who actively deny us any role in ‘their’ organisations, who sideline and ignore us, claiming to speak for us but without ever consulting us, who pat us on the head and tell us ‘we know what’s best for you, dear’.

We battle these parents, or try to enlighten or ignore them, or sigh over their attitudes, but we sometimes forget there are other parents of autistic children out there who DON’T have these attitudes. Parents who DON’T regard their child’s autism as a ‘tragedy’, or their child as a ‘monster’, etc. Who AREN’T wallowing in grief for a ‘normal’ child they didn’t have, or running here and there searching frantically for a ‘cure’ (though many do seek alleviation for various problems their child might have), or forcing their child into strict programs designed to make their child at least SEEM ‘normal’. They have embraced the autism, accepted their child just as he or she is, and got on with their lives as best as they can. A lot of them are even willing to listen to adults on the spectrum, to get some idea of what their child may someday be capable of, or to help interpret their behaviour, so as to help the child better. Some are even on the spectrum themselves, as autism is genetic, but many are not.

I feel these parents, the ‘unsung majority’ perhaps, deserve a whole bunch of bouquets. Why? Some might ask, surely they/we are just getting on with their/our lives, doing what everyone should be doing? My feeling is they deserve praise and our support for NOT subscribing to the ‘autism as tragedy’ mindset. For NOT being sucked into the frantic search for a cure, the ‘autism business’ that sucks dry the bank accounts of so many desperate parents. For NOT believing that their child is somehow ‘deficient’, or not good enough. For accepting and loving their kids just as they are.

It would have been so easy for these parents to succumb to all that huge pressure, the massive amount of negativity that’s out there about autism, but they didn’t. They had the courage to follow their hearts and their common sense, to do what felt and feels right for their children. I salute their courage, admire their strength, and wish more parents would follow their example.

To those parents, my utmost thanks, and my blessings. You are nurturing the best of the future generations of autistics, and one day they will look back and know just how lucky they are. Thank you.

Saturday 8 October 2011

Autistic Low Self Esteem and the Autistic Community

When some adults make the realization that they are on the autistic spectrum, instead of feeling liberated, it can plunge them into feeling even worse about themselves than they did before. Before they knew what they were, they could tell themselves they just weren’t trying hard enough, or the right way, or they were just stupid, or imagining it, or it was other people’s fault, etc, etc. They had hope, in other words, that someday they would find a way out of their difficulties, and become ‘normal’. Being told you have autism, then, destroys this hope. It can feel like being told you’ve been sentenced for life.

Some try to deny this, and adopt an attitude of ‘Okay, now I know what’s wrong with me, I can fix it’ – only to find there is no ‘cure’, no magic pill or surgery or treatment to make them ‘normal’, no ‘social skills training’ that will transform them. Or they can become depressed and self-punishing (or more so, if they were already), plunging into even lower depths of self-hatred than they already were in, because ‘now I’m really fucked!’ Some end up trying even harder to be ‘normal’, and dreading anyone finding out about their ‘terrible disease’.

All of this, of course, is connected to their low self-esteem, which in turn is connected to both the highly negative public image of autism, and also to how they have been treated by those around them – regardless of whether others know they are on the spectrum or not. When you’ve had a lifetime of being laughed at, yelled at, sneered at, scorned, scolded, ridiculed, condemned, rejected, ignored, bullied and harassed; of being told you’re useless, not good enough, a failure, a loser, stupid, weird, crazy, anti-social, cold, arrogant (to list but a few of the many insults commonly thrown at us), when it’s been made abundantly clear that who and what you are is not valued in the slightest, it’s really hard to have a good self-esteem. Then you add on top of that the images of autism and Aspergers that are common in the media and the public perception – cold beings with no emotions, no interest in other people, incapable of love or empathy or caring for others, obsessed with weird things, lost in their own private worlds, often incapable even of speech; or (if a little more ‘higher functioning’) semi-robotic geeky computer nerds with no manners or social graces, no sense of humour or imagination, again no emotions, and probably with poor personal hygiene as well. It’s not a pretty picture, and why would anyone want to identify with that, or be identified with it, in other people’s minds?

The only way out of this hell of self-hatred is to find your own kind. Only in doing so, can we ‘compare notes’, discover what strengths and weaknesses we really have, start destroying the myths and the negative stereotypes (at least in our own minds), and form a truer image of what it really means to have autism. We can find support, friendship, understanding, and acceptance. We can look at other autistics and see, hey, they’re not so bad, maybe I’m not so bad either… No, we probably won’t get along with or even like every other autistic person we meet, and we may even meet some who seem to come close to the stereotypes. But the aspie/autie communities are still the only place we have where we can be ourselves, and find others like ourselves, and even more importantly start undoing the damage a harsh, unaccepting world has done us.

Because it’s time to start undoing that damage. Time to throw off society’s negative image of us, time to start believing in ourselves, to start feeling okay about our autistic selves, to realise that while we have our problems, there is nothing wrong in itself with being autistic. This is hugely important, so I’ll repeat it – THERE IS NOTHING WRONG IN ITSELF WITH BEING AUTISTIC. I doubt I could say this enough. In the past few decades women, gays, people of colour, and all manner of groups have rejected the usual negative images of them, and, believing in themselves, formed new, positive images, that in turn changed society’s image of them, and consequently how they were treated. We can do the same. But first of all we need to start with what’s in our own heads.

I’m not saying it’s easy, I know (oh, how I know!) it isn’t. And my heart goes out to all those who still suffer from poor self-esteem because of their autism/Aspergers, especially those who haven’t yet found any others like themselves, or who have (online perhaps), but are still in their day-to-day lives socially isolated and/or stuck in negative environments where they continue to be badly treated because of their autism. I know how it can be a huge struggle just to get through each day, and emotionally limp home to recharge your batteries for another round tomorrow; and how being part of some neurodiversity movement can just feel like an added burden, or as impossible as flying to the moon. I know that feeling, only too well. But even if we can’t get ‘out there’ and be some hotshot activist, we can still change in ourselves. We can reach out to others like ourselves, we can reject other’s condemnation of ourselves, we can change the image of autism in our own heads. We can realize that’s it’s okay to be different, that ‘normal’ is over-rated, that we are okay just as we are, as our truly autistic selves. We can love ourselves, and each other.

Because if we don’t, for sure no-one else will.

Saturday 1 October 2011

Some More Thoughts on 'Labels'

As I’ve said before, a diagnosis and the label that comes with it can mean the lifting of burdens, in the form of the freeing of a person from a tangle of low self-esteem, feelings of failure and being ‘stupid’ or ‘bad’ or ‘not good enough’.

But I have to acknowledge that this does depend on the social context in which the person experiences the ‘labelling’. When I accepted that the ‘label’ of Aspergers Syndrome applied to me, it meant (admittedly gradually, as the implications sank in) an end to feeling that I was somehow simply ‘wrong’ or ‘defective’, a sort of mistake on the human production line; certainly inferior, my ‘difference’ something to be ashamed of, and to try to conceal from others. I wished I had known years earlier, and could have gotten help and support instead of being reproached and condemned for my ‘errors’. I have learnt to love my autism, and embrace it as a liberation and a positive identity.

But the aspie/autie community was the deciding factor in this. If I had listened to and read only the ‘experts’, or how autism is commonly portrayed in mainstream media, or even the ‘hate autism’ people, I would almost certainly had my low self-esteem reinforced, seen my ‘difference’ as even more of a ‘deficiency’, a ‘wrongness’, something to be eliminated at all costs. I’d probably have ended up suicidal. But luckily I found instead a supportive and accepting community, people who not only thought, felt, acted and reacted as I did – and who said there was nothing wrong with that, nothing intrinsically wrong with being autistic, while also acknowledging the very real problems we do have.

The era we ‘come out’ in has an influence too. I’ve tried to imagine how my life might have gone if I had been diagnosed with some form of autism as a child, in the 1950s or 60s (possibly ‘mildly autistic’ or ‘with autistic tendencies’). The chances are I would have been viewed as at least borderline ‘mentally handicapped’, and shunted into some sort of ‘special education’, which would have been a gross insult to my intelligence. At the very least, I would have been excluded, pitied, and had it assumed I could achieve nothing worthwhile in life. Opportunities, education and employment that I did later take up, would have been denied me. I would possibly never have got married or had a child. How much more damage this would have done to me, than simply struggling through life on my own the way I did, trying to be ‘normal’, I don’t know. I suspect quite a lot. So the label helps me now, but probably would not have in a less enlightened era, when there was no ‘autistic community’, no ‘neurodiversity movement’, no ‘nothing about us without us’, etc.

This doesn’t apply only to autism. Take for instance my daughter’s years of struggle with maths, which caused her a lot of difficulties in school. It wasn’t until her adult years she discovered she fit the criteria for a condition called ‘dyscalculia’ (I’m not totally certain of the spelling on this word), which is the numbers version of dyslexia, and now a recognised learning disability. It was a relief to her that she hadn’t been imagining her problems. Had she had this diagnosis when younger, and been given suitable help, how much frustration and confusion could have been avoided. At the very least, teachers might not have spent years reproaching her for “not trying hard enough”, or telling her “but you’re intelligent, surely you can figure this out!”

On the other hand, even if she had had this ‘label’, she might have been treated as those with dyslexia were treated then – it’s only fairly recently that the NZ education system formally recognised that dyslexia even exists, and I’m not certain as to the status of dyscalculia. She might have had scorn poured on her, told she was ‘making excuses for laziness’, etc. Her school years might have been even more difficult. She might even have been shunted into a ‘slow learners’ class – which she most definitely was not. So once again, the social context makes a difference.

Over the last thirty or forty years, due to the efforts of the various ‘liberation’ movements, things have changed radically for those who are gay, women, or people of colour. No longer is a black person seen as only fit for menial work, or women fit only to raise children and serve men, and gay people are no longer considered (by most anyway) ‘sick’ or ‘perverted’. But autistic people (and disabled people, and even to some extent many of the ‘learning-disabled’) are still seen as ‘lesser than’, to be pitied, patronised, patted on the head, and – if we do dare try to speak for ourselves - told we should simply shut up and accept what is done ‘to’ and ‘for’ us, because ‘we know what’s best for you’.

It’s now our turn, our time. Time to assert ourselves, to say well actually no you don’t know what’s best for us, to affect a paradigm shift in the public perception of those on the spectrum. To make ‘room’ for ourselves in the world, as other minority groups have done, to create the space for us to be ourselves, in all our glorious idiosyncrasy, and still have meaningful roles to play in the world alongside our NT peers. To be equals, though never, ever ‘indistinguishable’ from those peers.

Let’s do it.