Wednesday 21 August 2013

Five Reasons Not To Hate Being Autistic

I wrote recently on how I’d become aware of other auties hating their autism. It’s understandable (though not good) that they should do so, when you consider the lives of many on the spectrum. We struggle with sensory overloads, social difficulties, relationship problems, executive functioning problems, difficulties with employment and poverty, not to mention the lack of supports, accommodations and – crucially – understanding from others. We have often struggled through a lifetime of being condemned, abused, bullied, belittled, ridiculed, jeered at, sneered at, yelled at, rejected and isolated, and sometimes even subjected to torturous ‘therapy’. We may have been told, or heard our parents being told, that we are ‘flawed’ or ‘damaged’, and doomed to never have a decent life.

So yes, it is understandable, that some should hate what they see as the ‘cause’ of all that. But if we’re miserable, it’s not because of our autism per se, but our life-situations, and all that they lack - or don’t lack (that criticism, rejection, etc). To blame it on the autism rather than the attitudes and practises of those around us, is like blaming gays for homophobia, or indeed any group for their oppression. I know it can be hard to separate it out sometimes, especially when we’re, say, in sensory overload, or being dumped on by our ‘nearest and dearest’, or struggling to keep our home tidy, etc, etc, but there is a difference between these things and the autism itself. Autism is at its heart a profoundly different way of thinking and being. It’s neurologically-based, and though it often goes hand in hand with things like sensory issues, alexithymia (difficulty recognising and managing emotions), executive dysfunction, depression and anxiety, it is not itself those things.

And yet, even if we can see this, it can still be hard to find anything good about it. So I’ve made a list of reasons why we should celebrate being autistic.

1) Our different and original way of thinking. The world needs our innovative thinking – as Temple Grandin said, if things had been left to NTs, we’d all be still sitting around in caves chit-chatting. And even if you think you’re not especially innovative, you can still bring a fresh perspective to things. I remember once, in a feminist meeting many years ago, I got sick of how people were ‘talking around the point’. So I spoke up and said what I thought the real issues were – and several women came up afterwards and thanked me for this!

And if you’re thinking “well, that may be so for the ‘high-functioning’, but what about those who aren’t?” They still have something to contribute – even if it’s only teaching the NTs around them the value of compassion and taking the time to observe and understand those who are ‘different’.

2) Our honesty. This can be misinterpreted as ‘rudeness’, I know. But in a world full of BS of different kinds, some will find it refreshing and straightforward. We may have to learn how to ‘soften the edges’ of our honesty, or choose our words wisely, but it’s still a quality worth having.

3) Our integrity. This is sort of an offshoot of our honesty, and one which employers, partners, friends and associates can come to value, even – or especially – in a world where so many are conspicuously lacking in it. Don’t be shy about revealing it. It’s actually something to be proud of.

4) Our special interests. These are a source of so much enjoyment - certainly I wouldn’t be without mine. I pity NTs who never know the pleasure of hours and hours spent completely wrapped up in a favourite interest or activity. There’s nothing like it. I wouldn’t swap my special interests for all the socialising ability in the world.

5) We’re stuck with it. Autism is fixed at the genetic and neurological level. There’s no pill to get rid of it, and isn’t ever likely to be. The most that is likely to happen is that they’ll work out how to stop us being born in the first place, not a pleasant prospect. So we might as well accept it, and if we can, to even embrace it. Because why should we creep and cringe through the world, constantly apologetic for our very existence? We’re here, we have a right to exist and to be our true selves, just as much as any other human being does. The fact that we are human often gets lost by those dumping on us, but we don’t have to join in with them.

So there you go. This is just a ‘starter’ list really, I’m sure others will think of more reasons to celebrate, or at least not to hate, being autistic. Go for it.

Tuesday 20 August 2013

Discarding What Doesn't Work For Us

One persistent pattern I've noticed over the last few years, is how often and how much the things that work for NTs, do not work for us on the spectrum. Just a few examples of this are: –

1)  My favourite creativity book is ‘The Artist’s Way’, by Julia Cameron. I did its 12-week course years ago, and still refer to it often for inspiration. However one thing she recommends is a weekly ‘artist’s date’, where you take yourself out to somewhere new, as a way to ‘fill the creative well’. This has never worked for me – it just became an extra source of stress, trying to figure out where to go, how to afford it, and perhaps most importantly, going out anywhere, especially when it involves coping with other people and strong sensory input, means my creative well, far from being renewed, is actually muddied and drained. After a few weeks, I just gave up on them, but for years I felt guilty about that.

2) Many aspies have remarked, on Facebook and elsewhere, that regular methods of counselling and psychotherapy “just don’t work for them”, for a whole host of reasons. The only therapy method that seems to work even somewhat for us is Cognitive Behavioural Therapy, or so I’ve heard. For myself, I realised after visiting several counsellors over a period of years that I was better off figuring out myself on my own.

3)  And while I’m talking about psychology, my feeling is that the dictates of ‘pop psychology’ are also irrelevant for aspies. I don’t know how many years I wasted digging into my psyche, trying to find the neuroses others told me I ‘must’ have, as the only possible explanation for my ‘weirdness’. Now I realise my problems and behaviour were largely due to either AS, or the social anxiety that I suffered as a result. I’m not saying we don’t have psychological issues, just that they’re unlikely to be for the ‘usual’ reasons.

4) Many meditation techniques often don’t work for us either – many years ago, I attended a meditation class in Auckland. The teacher told us to ‘just watch your thoughts go by’… and I thought, how stupid! How can you watch your thoughts! This even though I’m a very visual person. I left the class in irritation, and it was many more years before I found the meditation method that works for me.

5) Our reactions to drugs are different to others – I’ve already posted on this elsewhere, so won’t go into further detail on that, but it’s a common phenomenon. Unfortunately, it’s also common that medical staff don’t understand this, and sometimes pressure us to take drugs, or more of them, than we know or sense our bodies are capable of handling, and/or they scorn what we tell them of our reactions.

6) Holidays/vacations – we’re supposed to be ‘refreshed’ and ‘rejuvenated’ by these, but so often we’re not. Instead we come home exhausted, worn-out, and needing a whole heap of quiet time in order to recover from them! Certainly I find the hustle and bustle of a holiday camp or resort horrific, as I suspect do most aspies.

No doubt you can all think of many other examples of the ‘normal’ things not working, or working differently, for you and other autistics. But none of this would be worth mentioning, if it weren’t for the fact that we so often feel guilty or ashamed whenever our reactions or needs differ from others.

Over and over again, I hear this sort of thing from my fellow autistics – “No matter how hard I try, I just can’t do _____”; or “I know I’m supposed to enjoy _____, but the awful truth is I find it horribly stressful”; or even “Is there something wrong with me, that I can’t ____?” We put immense pressure on ourselves to be ‘normal’, to make ourselves over into what we think we ‘should’ be like, or at least to hide that we're not like others, dumping on ourselves for our ‘failures’.

I know (all too well) that after years of being dumped on, yelled at, criticised, and told all the ways in which we ‘don’t measure up’, that it’s totally understandable that we should come to be just as hard on ourselves as others are. But it’s time for all of it to STOP. To stop comparing ourselves badly to NTs (or even other autistics, for that matter). Time to stop being so down on ourselves, to stop flagellating ourselves in our efforts to fit into a mold we were never designed for in the first place. It’s like trying to make a fish run, and then criticising it for not growing legs to do it with - instead of appreciating how beautifully it swims.

Because, when you think about it, why shouldn’t we differ? At the autism conference I attended last month, I listened as a doctor talked of the (at least) 234 genetic ‘loci’ that are involved in autism, and of the many differences between autistic and NT brains – in the white matter, the grey matter, the cerebellum, the cerebral cortex, the brain chemicals, the connections, on and on. So our brains are different, our bodies are different, our thinking runs along different channels, we focus on different things, we have different sensory responses, so why shouldn’t our needs and reactions be different as a consequence? Moreover, why should we squeeze ourselves into the narrow molds of ‘normal’, just to avoid surprising or upsetting – or angering – others? We have the right to simply be what we are, without feeling like a ‘failure’ or punishing ourselves for not fitting the NT mold.

For just about all of us, there’s been way too much focus on the negatives, and not what we can do, and what suits us. I say it’s time – way past time, actually - to stop forcing ourselves into false NT personas, to discard anything and everything that doesn’t work for us, to stop doing what doesn’t suit us (or, if we must do them, to not put on ourselves the expectation of enjoyment or happiness), to let all those things go without guilt or regret, and to assert our right and our need to be our true selves. Because in trying to be ‘normal’, we can only ever be ‘second-rate’ NTs. But if we accept our differences, and live them, we can be wonderfully first-rate autistics.

Monday 19 August 2013

A Crisis of Faith

I haven’t been doing much writing on this blog lately, for several reasons. I went to an autism conference, and then suffered a prolonged post-conference recovery, and just haven’t been at my best physically. Plus, my financial dire straits mean I’ve been feeling pressure to get on with other projects that might bring in some money. But I’ve also been having a bit of a ‘crisis of faith’. I felt like I was ‘preaching to the choir’, in that I seemed to have a very small audience who seemed to be already aware of the issues I raised, even if they couldn’t put it into words, and/or to pretty much agree with me. So I didn’t feel like I was actually ‘raising anyone’s consciousness’. But even more importantly, I’ve been getting more and more conscious of just how bad autism’s public image is, and how urgent it is to reach out to the general public and/or the media to get our viewpoint across, and change that image. So my blog seemed like a sort of distraction from that, a self-indulgent place where I raved on about my favourite hobby-horses, but not anything, I felt, that was really going to change the world for autistic people. As a result I didn’t feel much like writing any posts, and even wondered if I should let it go altogether.

But I’ve changed my mind on that, as a result of quite a few posts I’ve read recently in several autistic Facebook groups, which have left me feeling both saddened and alarmed. It seems there are still far more autistics out there who hate their autism than I realised, and who almost invariably hint that they hate themselves as well, for having it. Moreover, they don’t feel there is anything good about being autistic/aspie. Suffering from chronic depression, anxiety, or executive functioning issues, they are confused, overwhelmed, and miserable. Sometimes they’re not aware of the neurodiversity movement, or the concept of ‘autistic rights’, especially if they’re new to the scene, but even when they are aware, they frequently don’t see its relevance to them and their daily struggles.

But I most whole-heartedly believe it is extremely relevant – to all aspies/auties, no matter where they are, or what they’re doing, or what their ‘functioning level’ is. There’s so much that needs changing in autistic lives, and the first step in that change has to be changing our attitudes towards ourselves. We need to end the self-loathing and the impossible attempts to force ourselves into NT patterns which cause us so much misery. I do understand why we feel that way and do that to ourselves, but truly, it’s nonsense that we are not good enough as we are. It’s a set of mental shackles, and it’s time to break out of them and be free.
And the best way to do this, is with the support and companionship of other autistics – who can say “yes, I feel like that too, and no, you’re not crazy for thinking that”, who have had similar experiences, who can offer advice that actually works, who can accept us just as we are, in all our genuine, eccentric, autistic glory. We can value each other, support each other, break those mental shackles… but only if we first have the concept that we have worth as autistics.

Which is exactly how the ‘autism rights’ or ‘neurodiverse’ movement started – by a few autistics getting together, offering support to each other, and in the process realising, hey, you’re not so bad, we’re not so bad, we’re not the terrible, useless, mentally crippled beings that we’ve been told we are… So how come they treat us like that? And – how can we change things? And so it all began, with just a few, and has grown and grown from there. (That’s really how any social movement begins actually.) The concepts of ‘autistic pride’ or ‘autistic rights’ are really about accepting and valuing ourselves as autistics, and then striving to ensure others do the same. These concepts can be communicated from one autie to another, spread wholesale through communities, spoken of at conferences, written about in the media, discussed on social network sites, and developed in our daily lives. And thus, the principles of the neurodiversity movement can have an effect even on those not directly involved in it – much the same as the principles of other social movements, eg feminism, have spread to those who have never taken any part in them.

And yet, as I’ve said, there are so many who seem to be isolated from all this, alone, lost, hating themselves and their autism. So, in feeling the need to communicate with them, to show them that being autistic is not All Bad News, I’ve experienced a renewal of the impetus to write on my blog, because that seems the best way to reach out to ALL autistics, to tell them that they are not alone, that they are not worthless, that there are good things about being autistic, and that it is possible to change our lives for the better. I want them to know that even if they feel that no-one else values them, I value them, feel for them and their struggles, and want to do all I can to change things for them.

Of course I’m not thinking I can do this single-handedly – there are, happily, plenty of other fine autistic writers and advocates out there, all doing their bit, and more coming forward all the time. However I hope to do my bit, to add my rivulet to what is becoming a flood, to help swing the scales to positive with my few ounces, all in the hope that my words will have an impact, will make a difference. I certainly hope so.