Sunday 18 December 2011

Be Kind to Yourself This Christmas

The festive season is a difficult time for just about all on the spectrum, and I want to urge all spectrumites to be kind to themselves this year. Most of us get stressed out to the max. Some struggle to understand the whole point of it all. Others feel even more lonely and isolated than they do the rest of the year. Those who do throw themselves into participating, can fall into the trap of trying to have, or thinking they ‘should’ have, the ‘perfect’ Christmas, just like in the Christmas movies or in TV programmes or ads.

It’s important to remember that even NTs find Christmas a stressful time. There’s a reason why domestic violence statistics shoot up at this time of year, for instance. Many NTs also have dysfunctional families that make Christmas gatherings a nightmare. And then there’s the financial stress of gifts and extra travel and special foods, especially this year when even your average middle class person is struggling to make ends meet, and those on the breadline (which includes many of us, with our high unemployment rate) are beyond struggling and into desperation. So don’t think you’re alone in finding this time difficult.

There are practical things you can do to reduce Christmas stress. For gifts, avoid the nightmare of large department stores – instead try small speciality stores, or do your shopping online or through catalogues. Visit a farmer’s or craft market if there is one near you, they’re often great places to find that special and/or ‘different’ gift at a moderate cost. Alternatively, people are usually thrilled to get homemade crafts or baking, if you have a talent for these. If you have kids, or are buying for kids, don’t get caught up in thinking you ‘have’ to buy them expensive toys etc. Kids are often surprisingly content with less expensive items, especially those which involve crafts or physical activity – or that make a lot of noise!!!

Food-wise, stick to your normal types of food as much as possible, throughout the season. If you’re gluten or dairy free for example, make sure others who are doing any of the Christmas cooking know this, and ask for at least some of the food to be ‘okay’ for you. Make suggestions or give recipes if need be. At the very least, ensure you take some food that you know you can eat. And don’t be tempted by the sumptuous display on the table into eating what you know will mean you suffer later, or let yourself be nagged into it by inconsiderate or well-meaning but ignorant relatives. If you’re doing the cooking, keep it as simple as possible – you really don’t need to provide six different and elaborate main dishes and three starters for example. And ask others to cook/bring some food, eg a dessert or salad each, or some drinks. (Oh, and limit or stay off the alcohol if possible, it tends to make things get out of control very quickly.)

If you’re celebrating at your own home, it’s perfectly okay (even a good idea) to have a gathering of only those people you actually care about and want to be with on the day itself – whether this is a partner, your kids, friends or whoever. If you must have or go to a larger family gathering, or you want to, then ensure you have frequent ‘time out’, by going to another part of the house, or your room, or outside, for a walk if the weather permits it in your part of the world. As my family lives not too far away, I simply go home and rest for a few hours in the middle of the day, for instance, between the morning brunch/present giving and the Big Dinner in the evening. Have your own transport if you can – it makes getting away much easier. There is no need to make elaborate excuses when you do this by the way – if any explanation is necessary, then simply say you’re tired/overloaded/peopled-out, whatever works for you. If they don’t accept this explanation, say ‘I’m sorry, but this is what I need’, and do it anyway. Your own needs must come first, not the opinions of relatives.

If you have no-one to get together with, for whatever reason, and especially if you don’t have a lot of money, consider going to a community or charity dinner, if there is one near you. Better yet, volunteer at one. You get to very gently socialise while you peel potatoes, stir gravies and dish up Christmas puddings. If this is not your thing, then do make some effort to make something special to eat, it doesn’t have to be ‘Christmassy’ foods – perhaps your favourite food is oysters, or bananas! Also do something a little different, maybe play all your favourite songs or movies, play all your favourite computer games, or go for a walk in your favourite spot – whatever will make you feel like you’ve ‘celebrated’ in some way.

And let go of the idea of the ‘perfect’ Christmas. The movie/TV version is a commercialised, sentimentalised version meant to either sell the movie, or get people to watch the programme, or buy the product advertised. It has very little to do with the reality of most people’s Christmas – which more often involves things like kids running around screaming and bouncing off the walls because of over-excitement or too much Christmas sugar, Uncle George getting drunk on the sherry, Grandma falling asleep face down in the trifle, and at least one sibling or cousin having a Huge Fight with someone else and storming out vowing Never To Speak To That Bitch/Bastard Ever Again. (Okay I exaggerate, but these things do happen!)

Do what works for you, not what you think you ‘should’ do. If you have negative or confused feelings about the whole business, acknowledge them as valid, even if it’s only to yourself so as not to spoil things for those around you. It doesn’t mean they are any less valid or real. If you have to go through at least some of the rituals and palavers associated with the season, just grin and bear it with as much good grace as you can. Remember it’ll soon be over, and sanity return!!

And above all, be kind to yourself. Don’t thrash yourself trying to fit into a mold that is not you, and/or not right for your family and close ones. You have the right, even the duty to yourself, to celebrate exactly how you want to celebrate, and not how anyone else tells you, or tries to pressure you, that you ‘should’.

Because you’re worth it. Season’s greetings my friends. Have a good Christmas.

Sunday 11 December 2011

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.

Sunday 4 December 2011

Christmas, Parties, and the Long-Distance Loneliness of Being an Aspie

The Christmas party season is upon us. Over the weekend, two different sets of neighbours have had parties. Last night, when I stepped out onto the deck for some fresh air before going to bed, I listened to the raucous merry-making from one of them. I don’t know these people (they’re rental houses, and the tenants change frequently), nor did I have any especial wish to, or to join their party, but as I listened to people enjoying themselves (or seeming to), I realised there is still a part of me that wants to be ‘normal’. (This isn’t only at Christmas time of course, it just seems more, I dunno, poignant, maybe, then.)

It’s the part of me that wishes I was the kind of person who isn’t consumed by anxiety when invited to a social event, who looks forward to it with anticipation, walks into one with confidence, is energised or relaxed simply by being there, who can dive into conversations with gusto and always knows the right thing to say, and who just LOVES being a part of one of those laughing crowds that always seem to be having SUCH a great time…

It’s the part that’s suffered through decades of social awkwardness and clumsiness, of ‘conversations’ that consist of me blurting out inanities or babbling something stupid or rabbiting on about my current favourite topic, or being totally tongue-tied and freezing up completely, or standing on the sidelines ignored by others, with drink in hand feeling stupid or bored or anxious or just plain baffled, or hiding in toilets, or so overwhelmed by anxiety at the thought of said social occasion that I never got there in the first place.

The part of me that still wishes I was able to ‘do’ that kind of thing, and all the other things that NTs do oh so, so easily.

Even though I don’t want it enough to stop being me.

It’s not that I can’t (now) go into a social occasion and make at least a facsimile of ‘small talk’, at least enough to get by (it’s only taken me several decades to learn this), or that I don’t know that not every NT is a confident social butterfly either, or that I don’t now have aspie/autie friends who also aren’t into the socialising/party thing, or that, like I said, I would want to stop being me, with all my autistic quirks and idiosyncrasies. It’s not even that I think parties are wonderful places to be, or that the people who wildly enjoy them are models to emulate or the type of people I would want to get to know. Far from it.

I really can’t explain it totally. I only know that last night, standing outside in the dark, alone, listening to the sounds of people having what seems like fun, and conscious of my lifetime of ‘outsider’ status, being an aspie suddenly felt a very, very lonely thing to be.

Wednesday 23 November 2011

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’.

Wednesday 16 November 2011

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.

Monday 14 November 2011

Behavioural Therapy - 'Normalization' vs 'Teaching of Skills'

Parents who are considering behavioural (or any) therapy of any kind for their autistic children need to ask themselves a crucial question – what is my motive for this therapy? What is the goal I want to reach?

There are basically two approaches to therapy, and hence two radically different goals: -

1) NORMALIZATION. This approach takes the view that autism is something terrible, a scourge, a deviation from the norm to be eradicated at all costs. All outward manifestations of it must be somehow ‘scrubbed’ from the child’s behaviour, so that the child at least appears normal, and ‘indistinguishable’ from their peers.

To effect this, the goal is to get rid of anything that ‘looks autistic’, in one way or another. This includes the repression or denial or ‘therapising away’ of such things as toe-walking, hand-flapping, monotone voices, long periods of time spent in special interests (categorised as ‘obsessions’, and therefore pathological), long periods of solitude (categorised as ‘anti-social behaviour’, and therefore again pathological), symptoms of sensory overload, the lining up of toys or other possessions, or indeed any kind of stimming.

2) TEACHING OF SKILLS. This approach takes the view that autism simply exists, and is neither good nor bad, but does present specific handicaps that the child can be helped to overcome, by the teaching of useful skills and knowledge.

These skills can start with things like basic communication and toilet training, and how to feed, bathe and dress themselves. The parents or therapists can then move on to teaching the child such things as how to use visual aids, follow school rules, or play with other children. As the child grows older and into adolescence and young adulthood, further skills can be added – how to manage money, interact with the opposite sex, cope with university/college, or live away from parents… The list could be endless, but the point is that autistic children WILL NOT LEARN these things without help, or will flounder severely as they try.

There are of course people who do both these things, considering the teaching of skills as part of ‘normalization’. Still, the general rule applies – they consider making the child ‘normal’ the over-riding goal, and the ‘skills’ are just a part of that. Whereas those who take the second approach, are very little concerned with such outward manifestations of autism as hand-flapping or toe-walking or stimming, and far more concerned with assisting the child to acquire concrete skills to help them cope with the world.

I also accept that the parents who take the first approach believe they are doing what is best for their child, that they act out of concern. But they are starting with the belief that it’s a terrible thing to be autistic, they generally suppose the child must be miserable simply because of being autistic, and so ‘must’ be happier without the autism. There’s a whole weight of assumptions there I won’t go into, but I would ask such parents to consider this:-

Autism is not a ‘layer’ obscuring the ‘real’ child. It IS the real child. Autism is an intrinsic part of themselves. To teach the child to hide/conceal/suppress/deny this real self and all its outward manifestations, is to force them into a foreign mold of ‘normality’, to feel that their ‘core being’ is rejected by those who claim to love them, and to teach them to devalue and even hate that true self. Low self-esteem, depression, and anxiety are virtually inevitable. Some young autistic adults even fall into alcohol or drug addictions, or attempt suicide, as a result. Moreover, if the emphasis has been too much on ‘normalizing’, and not enough on acquiring those skills and information the child really needs to cope, they can fall into the abyss of executive dysfunction (ie not having a clue how to organise or care for themselves), and their lives end up a mess, with consequent despair and self-hatred. Is this really what you hope to achieve?

Autism is for life. Yes, teach them whatever you feel they need to cope with the world, and to improve their lives. But young autistics also have the right, and the need, to go out into the world knowing they are valued and loved as they are, for all that they are – INCLUDING the autism.

11 April 2012 Footnote :- I have decided to call the 'teaching of skills' approach 'maximisation'. I say why here....

Tuesday 8 November 2011

'That' Type of Autism Parent, and their Criticisms of Us

 A while back, I wrote in praise of the ‘other’ type of autism parent, the ones who DON’T subscribe to the ‘autism as tragedy’ etc viewpoint. But today I’d like to examine the ones who do, especially those who claim that we adults on the spectrum, especially the activist ones, are, (in my friend John Greally’s words, from the type of emails he gets several times a week) “nothing but a pedo nanny-state interfering molester trying to get at their kid's life and wreck it, to stop the parents grieving their child to death with therapy and crap, to restrain them from lovingly ripping their child's autism mask off, the asshole who caused autism - or if not - the asshole who stopped him getting treatment by whingeing and confusing people, an obstacle stopping funding or taking funding, a fake malingering foil to his child's wellbeing, the distraction from his sons serious needs, the coward hurting his brave son's interests..."

I could go on, but I think you get the picture. But let’s examine these beliefs, one at a time.

1) That we are ‘against’ all therapy, and just want the child to ‘vegetate’ in their autism. Not true – rather, what we challenge is -
            (a) the GOALS they hope to achieve through therapy - ie are they trying to ‘normalise’ the child, to ‘eradicate’ their autism - or to teach them practical skills and knowledge that will help them function in the world as an autistic? (I will talk about ‘normalisation’ vs ‘skills-teaching’ in a further post.)
            (b) The TYPE of treatment or therapy they use – we have serious concerns about many of these. Some are punitive, a lot are overly demanding of time and energy, most are expensive, many are useless (and hence a rip-off), and some are just downright dangerous.
This DOESN’T mean we are against therapy altogether. See my earlier post about ‘cure’ vs ‘healing’ for more on this.

2) That we want to ‘wreck’ their children’s lives. Again, not true. These children are future members of the adult autism community, our successors in effect, why would we wish to harm them? This seems to be an extension of the belief we are against therapy, but also I believe it results from our statements that autism is not the ‘Big Baddie’. To them, it is, and so they interpret what we say as ‘condemning their child to a horrible life’. I really wish I could find a way to communicate to such parents that being autistic doesn’t necessarily mean having a terrible adult life – that there are good things about being autistic, that even the ‘worst’ features of it (meltdowns, communication difficulties, etc) can be ameliorated or minimized without eliminating the autism itself, and that other negative factors are the result of social attitudes which can be changed, just as attitudes to gays, people of colour, women, etc have changed. Life as an adult autistic is different, sure, but not a death sentence.

3) That we want to stop them ‘ripping the autism mask off’ their children, and thus ‘saving’ them from Big Bad Autism. There’s some truth in this – to the extent that we know that the autism is NOT a mask, not a ‘layer’ superimposed on an otherwise ‘normal’ child. It’s an integral part of their/our being, their/our identity. Attempts to ‘rip it off’ usually only result in the child realizing that this core part of themselves is Not Acceptable to those around them, and so they learn to hide it, to suppress their reactions etc, to their detriment in the long term. Depression and low self-esteem are huge problems for adolescents and adults on the spectrum. Is this really what these parents want for their kids? I know that most take this approach out of love, but it’s a misguided attitude, just the same.
4) That we are standing in the way of their kids getting funding for help and support. There have been a few instances in the States where autism self-advocates have opposed laws that would force health insurance companies to, for instance, pay for therapies like ABA. They’ve done so out of concern that these therapies are not the best way to help autistic children, or that such programs might de facto become the only ‘approved’ way to do so, and other, better ways might not be allowed as a consequence. Perhaps these instances are the source of this belief.
Or perhaps they think that if ‘higher-functioning’ adults get support, it will mean less of the government funding ‘pie’ for things like teacher aides or other support for their kids in school. Or maybe the mere fact that adult autistics exist and are speaking up to say ‘being autistic is okay’, in their eyes is somehow ‘dooming’ their kids’ chances of getting those things?
Whichever, it’s a false belief. The amount of help or support available to anyone on the spectrum, adult or child, is minimal to non-existent. It needs to be increased sizeably for EVERYONE.

5) That we are ‘fakes’ determined to distract attention away from their child’s serious needs. This is actually extremely insulting, not to mention based on false (and outdated) ideas of what autism truly is, namely –
(a) That only the most ‘severe’ or ‘classic’ autism, often now called ‘Kanner’s Autism’, is ‘real’ autism. This ignores the increased understanding of autism we now have. Do these parents just not know about this (which seems unlikely), or do they really think that all of the doctors, scientists, psychiatrists etc, who have been at the forefront of this change to a ‘spectrum’ view of autism (and that’s without mentioning the adult autistics themselves of course), have got it totally wrong?
(b) That the adult autistics now speaking up, simply because they have the ability to communicate, must therefore have no other problems or difficulties – and thus that we don’t have any ‘right’ to complain. It’s the “If you can speak, you’re not autistic” attitude. This is ludicrous. Firstly, many spectrum advocates aren’t in fact able to speak, or to speak consistently – they communicate wholly or partly through communication devices. Secondly, the ability to communicate, verbally or otherwise, is no guide to where the autistic person is in regards to the rest of their life. Autistic adults vary greatly in their abilities, degree of independence, etc, but even the most ‘self-supporting’ and ‘normal-appearing’ ones have major issues in a world that all too often doesn’t understand, tolerate, accommodate or accept them. And THAT is why we speak up!!

Sadly, the incorrect beliefs of these autism parents stop them seeing the things we are, at least potentially, in agreement on. I would really like to say to them –

“Please know that we too have the best interests of your autistic children at heart, even if we differ in what that ‘best’ is, and what is the ideal way to go about getting it. We have more in common than you think, and despite all the rhetoric and insults that have been tossed around to date, I still believe we can and indeed must work together in the long run, for the good of all autistic people.”

If only this message could get through, then a lot of totally unnecessary aggro could be avoided. Imagine if we all worked together to change government policy and social attitudes, instead of warring against each other. Imagine the power that would be unleashed, instead of it being wasted in mutually destructive conflicts.

Imagine the power we could have together. Imagine, and weep.

Tuesday 1 November 2011

The 'Berlin Wall' for Autistic People

A while back, I wrote a post on some of the reasons why it’s difficult for autistics to articulate our experiences, most especially the lack in the English language of words with sufficient power to describe them. Today however, in honour of Autistic Speaking Day 2011,  I’d like to explore another block to our speaking – that of the attitude of others that precisely because we are autistic, what we say has no worth.

The process is one of invalidation. Because we are autistic, it’s presumed we can’t speak for ourselves, don’t know what we want, can’t articulate it if we do, and if we can and do speak, it’s presumed (and we are told) that what we’re saying isn’t valid, because “that’s just your individual opinion” (even when we make plain we’re speaking for a group), and “we know what you need” (better than you do, is the implication), or even that “if you can talk, you’re not really autistic” (despite our real and ongoing difficulties with life).

The resulting practise is one of patronisation. This can happen anywhere with anyone not on the spectrum, but is appallingly common in many disability or autism organisations, I am not going to name names here, but we all know the sort of organisations I mean. The ones who are reluctant to engage with other organisations run by and for adults on the spectrum, who have few - or none - of us on their boards, and who won’t allow us to help in any meaningful way, even when we offer. The experiences quoted below are fairly typical –

 “[I was] told to hurry-up and develop resources to encourage employers to employ adults with autism... while at the same time being belittled daily as the token autistic employee of the same organisation and experiencing micro-management because of "fears". Offering to review contract submissions valued at $x million only to be rejected as not having any relevant inputs or experience, then immediately afterwards getting to be (sadly and unfortunately!) the casting vote on repeat [government] panels that fair-handedly rejected those same contract tenders, and because they lacked precisely the input offered.”

“I've had this happen with [x organisation]. "We want your input, help us make the (preschool, adult vocational center, etc.) better for the autistics we serve, we'd love to have your input and have you work with our kids." Uh-huh, 3x at various meetings/conferences, not so much as a call back. But boy, do they know how to hand out my number when they get a call they don't know how to handle, like moms looking for group homes with openings or social groups in rural areas...”

“Still laughing at [the leader of an autism organisation] using the example of their having "employed" me… [yet all the while] forbidding me from talking to people about AS [when they came in to the office]. But she uses it to say "we are an aspie-friendly organisation".”

“I have been ignored twice by a Job Network that assists PWD into employment.. well they say they do.. but I would like to see proof of their ability. I had some good success when. I worked with one Job Network with helping PWDs… but yes I have been ignored, even when I explained what I used to do. Maybe I sounded too eager or something rather than just crunching people out like numbers…”

Additionally, when some aspies challenged members of one autism organisation committee on their claim to speak for adults on the spectrum, they were told ‘we know best’, and that, even they weren’t on the spectrum, the members considered themselves ‘qualified’ to speak for autistic people, and ‘not in need of input from autistic adults’.

I should note here that these aspies are mostly past forty years of age, some have advanced degrees, all have relevant life experiences or skills, and are articulate and self-aware. I’m not entirely sure what’s going on in the heads of the members of such organisations, but it does seem obvious they see us as ‘incompetent’ and ‘defective’ somehow in our capacities, and in need of their ‘help’ and ‘management’. This generally without looking at the individual spectrumite’s actual abilities or experience – regardless, they saw them filtered through the lenses of their perceptions of autistic people, rather than the reality in front of them. We are objects of pity, ‘lesser than’, someone to be ‘assisted’, but never, ever their equals. And certainly not fit to have an equal voice or (for the most part, there are some exceptions slowly emerging) to play a substantial or meaningful role in their organisations. Note – ‘their’ organisations – because so far, despite their claim to ‘speak for’ us, we are certainly not fairly represented in their management structures – and in many cases, not at all.

This is the ‘deficiency’ model of autism, which many of these organisations are still actively promoting – and given that they are seen as the ‘experts’ on autism, where they lead, the general public, and governments, will likely follow, in how they perceive autism. So they have a huge influence on how we are seen, how we are reacted to, how we are ‘handled’, what rights and opportunities are granted to us. This model has become a brick wall, a blanket to smother us and keep us helpless and silenced. It is I believe our own personal Berlin Wall, and like that ghastly symbol of oppression, it needs to be torn down.

And the only way to do it is to keep on keeping on – keep speaking, keep thrusting our truths and our realities forward whenever we can, keep pushing at that Wall till it crumbles to dust, in the face of the manifest and undeniable truth – that we are human beings, with the same feelings, the same rights, the same capacity for humanity, the same range of abilities, as everyone else. Only then, when this truth is known, will we be accepted as the equals we are.

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.

Saturday 24 September 2011

Just a Couple of Points

1) After I wrote my recent post on The Autistic Label and Identity, a friend commented that she was all for embracing or claiming our label... as long as it doesn't include us considering ourselves better than non spectrum people... as I would never want to participate in reverse stigma or behaving in an egocentric manner as to presume our way of thinking is better or superior - as I all too often see in non-spectrum people towards us.” She made it plain that she didn’t mean me, that it was rather in reaction to “some Aspie groups internationally who go to an extreme and do articulate Aspie people as being 'better than' non spectrum people, superior etc.”

For the record, I want to state here that I do not, and never will, consider any group or individual better than another, whether it be on the grounds of race, class, gender, sexuality, ethnicity, nationality, religion, dis/ability, neurology, or anything else. Since I was a child, I have always known that all are equal in their essential humanity, their human spirit, their soul, if that word is acceptable to you. I’ve never spoken of it much, as I lacked the words to explain what I knew, and still can’t really put it into words. Yes, people vary in their abilities, intelligences, education, talents, personalities, strengths, etc. But that doesn’t erase the fact that they are all, at the core, simply human, and equal in that essential ‘human-ness’. Call me a (socially-blind) aspie, but I ‘treat a king and a commoner alike’. Because they are.

I realize that when we’ve constantly been told, and are still being told, that we are ‘inferior’ in some way or another, it’s very tempting to turn the tables and claim “well, humph, actually WE’RE the superior ones, we have these abilities, this outlook, this whatever” – but it simply isn’t true. We have lacks, and strengths. So do NTs. So does everyone. It’s part of being human. That the lacks and strengths are different doesn’t change that.

2) Further to the above, I want to state that my goal has always been, and always will be, the pursuit of truth. If that means uncovering, discovering, discussing or revealing things that are unpalatable, that people (even those on the spectrum) don’t want to hear, then so be it. No-one is served by the suppression of the truth. Suppressing it or turning away from it only corrodes us internally, keeps us small and fearful.

Yes, there are ways and ways to tell the truth, and I’d never want to hurt anyone, or have anyone feel I’ve put them down or told them they are useless, a failure, deficient as a human being, etc, etc – I’ve been told that too often myself. That is not my belief, nor my intention. So call me (once again) a (terminally honest) aspie, nonetheless, I believe we have a duty to ourselves and to those who come after us, to find / reveal / discuss / assimilate / tell ALL the truth, the whole truth, and nothing but the truth.

Because only by facing our truths, can we grow beyond our limitations, develop our strengths, and become all that we are capable of being, both individually and collectively – and that ‘all’ is very much indeed, much, much more than we are now.

Tuesday 20 September 2011

The Autism 'Label' and the 'Disabled' Label

Another reason I suspect many on the spectrum reject the ‘label’ of autism, is because of the association with ‘disability’. Much of the little there is about autism ‘out there’ insists on calling it a ‘crippling disability’ – and few like to think of themselves as ‘crippled’, even if they have major difficulties with many areas of life. Their image of ‘crippled’ or ‘disabled’ is perhaps of someone drooling in a wheelchair, having to be looked after by others on a 24/7 basis. Or perhaps a blind or deaf person, an intellectually handicapped one, etc… “Well, I’m not like THAT!” they tell themselves.

It doesn’t help that the ‘disabled’ are often treated as though they are all intellectually handicapped, or incompetent to manage their own lives. For instance, recently two men here in NZ were not allowed to take the plane seats they had booked – because they were in wheelchairs. Not because there was no room for the chairs; rather, they were told, the airline had a policy of not allowing any disabled to fly without their ‘carers’. These were grown men, who simply happened to be paralysed from the waist down. They could take care of their own needs, and in fact were on their way to compete in a disabled sports tournament. They didn’t need ‘carers’, they told the airline staff indignantly, to no avail. They still weren’t allowed to fly. (The airline did later apologise, I must add here, though only after the men contacted the media.)

I have Chronic Fatigue Syndrome, a physical disability, and have had similar things happen to me. I have been patronised and talked down to, especially during the worst phases of my illness, till I sometimes felt like saying “it’s my body that’s weak, not my brain!!” That at times I felt I was probably more intelligent than them, made it even more insufferable.

In fact the disabled often seem to be treated as though they aren’t fully ‘human’, with the same rights and dignity as the ‘normals’. (Does this begin to sound familiar to anyone on the spectrum?) While their physical needs are better taken care of now than they used to be – eg ramp access to public buildings, disabled toilets - their psychological needs are still often brushed aside, at least by the general public. It’s presumed they should be ‘grateful’ and not complain if someone talks down to them, or literally over their head (“Does she need someone to take her to the toilet?”).

So ‘disabled’ is seen as ‘lesser than, weak, inferior’, and who would want to identify with that? This sometimes extends to not wanting to identify even with those on the spectrum who seem to be more obviously ‘disabled’, ie the ‘non-verbal’, non-toilet-trained adolescent or young adult, or anyone else obviously more ‘severely’ autistic or ‘low-functioning’. Some aspies or HFAs seem to draw a line between ‘them’ and ‘us’ – the ones who can ‘function’ in the world (albeit with difficulty), the ones who can go to school, hold down a job, start a family, hold a conversation (of sorts), etc, etc. “We’re not like them either”, seems to be the thought/feeling. (I would hasten to add here that not ALL ‘higher functioning’ autistics see things this way.)

But that line is proving more and more of an artificial one, as more and more of those once thought ‘severely autistic’ reveal themselves as capable of communication, even if it’s only on a computer keyboard or similar device. Moreover, my feeling is that the difference between ‘them’ and ‘us’ is one of degree, not kind. To draw such a line is to abandon our ‘less-able-to-pass-for-normal’ brothers and sisters. They need us, and we need them. We are all in the same boat, and what affects one ‘type’ of autistic, affects us all.

Moreover, I don’t feel there is any shame in admitting that we are ‘disabled’ in some areas of our lives. In fact, to be autistic means being disabled, at least to some degree, and in some areas of our lives. I would certainly admit to being ‘socially disabled’, and that this affects my ability to have relationships, make friends of anyone not also on the spectrum, and to relate to co-workers. I also have had major difficulties learning what are now termed ‘life skills’, which has also handicapped me in many employment situations, and I struggled for many years with ‘executive dysfunction’, until I learnt some pretty rigid ways of organising myself and my daily routines. I don’t feel ‘lesser than’, in saying this, nor do I feel my intelligence is demeaned, or my essential ‘personhood’ somehow diminished. I’m still ‘me’, and as worthy of respect as anyone else. As are you all, including those of us who are labelled ‘lower-functioning’, and as are all those people in wheelchairs, or with intellectual disabilities, or blind, or deaf, etc, etc. And the ‘normal’ people too.

We are all equal in our essential humanity, all worthy of respect as people, whatever our individual diagnoses or difficulties – or lack of them. It’s a point worth remembering.

Monday 19 September 2011

On the Autistic 'Label', and the Autistic Identity

Lately I’ve heard a lot of autistics say they ‘don’t want to be labelled’, that they dislike labels. A lot of people seem to see a label as being the same as an insult, stereotype, or name.

A label is a simple description, like a label on a can or food jar (eg Baked Beans), or a physical diagnosis (eg heart disease), or a neurological diagnosis (eg Aspergers Syndrome). It only acquires meanings (negative or positive) in the mind of the speaker.

An insult of course is just plain negative. A label can be turned into an insult, eg when people turn ‘Aspergers’ into ‘ass-burgers’; or it can just be negative from the start, such as ‘weirdo’. Just about every Aspergers or HFA adult has heard these insults, many a time. Unfortunately.

And insults, in turn, can lead to stereotypes, where a ‘label’ is presumed to mean certain characteristics, usually negative, and insults such as ‘geeky’ or ‘weird’ are presumed to be true descriptions.

A name, on the other hand, can be either derogatory or flattering. “She’s a real go-getter”, is vastly different from “she’s a bitch”. “He’s a computer expert” is not the same as “he’s a total geek”. Thus a name can be either a compliment or an insult, and can either build someone up, or tear them down; make them feel good about themselves, or diminish their self-esteem.

And all of these are different again from an identity, which can also be positive or negative. Once, being female, non-white, non-heterosexual, etc, usually meant a negative identity. Various social movements turned that around, and now many are proudly gay, black, a woman, etc. Room has been created (often forcibly) for it to become a positive identity.

We on the spectrum have not yet established that positive identity, we have not yet created the room for it to happen, except in our own small enclaves – and sometimes not even there. And the rest of the time, we are abused, bullied, rejected, ridiculed, patronised, laughed at, yelled at, told how stupid and useless and hopeless we are, etc etc - and meanwhile the images of autism that are ‘out there’ are totally negative, and difficult to identify with - is it any wonder so many want to reject the label of autism altogether?

Yet a label and the new identity that comes with it can also mean a burden lifted, being freed from a tangle of low self-esteem and feelings of failure. It was certainly so for me when I discovered Aspergers Syndrome. For the first time, I had an explanation for what I had seen as a deficiency in myself. To find that there were others like me, that I wasn’t a ‘lemon’ on the human production line, was a revelation and a liberation. Yes, I had to battle through a lot of negativity in the material written about autism and Aspergers, but I began to see that though I lacked certain skills, I had other attributes which were actually plusses. My new friends, also on the spectrum, have helped me to see myself very differently. I have learnt to love my autism.

So let’s embrace our ‘label’ or identity as Autistics, because only then can we turn it around to become a positive thing, firstly amongst ourselves, then in the world at large. Because I want an end to the crippling self-hatred, low self-esteem and difficult lives of ALL my fellow autistics - to lift us out of the old ways of being autistic in a world that doesn’t understand us or want us. No minority group has ever changed the public image of their identity or ‘label’ by rejecting it, hiding away, or claiming to be ‘free spirits’. It’s time to change, to love our autism, to embrace a positive autistic identity. For all our sakes.