Monday, 29 April 2013

Autism Positivity Flash Blog post

Tuesday, April 30th, 2013, has been designated ‘Autism Positivity Flash Blog’ Day. I’ve been deliberating on what to write about for this. The good points about being autistic? Our strengths? Sure, there are plenty, but which to choose? But finally I realised the best thing about ‘Autism Positivity’ is that it can occur at all.

And the reason it’s able to occur, is the autistic community. We, who the ‘experts’ said were ‘anti-social’, could never form communities, create our own organisations, build bonds and ties with each other – or, indeed, with anyone - have done just that. Prior to the formation of this community,  we were – and in many cases still are - isolated, muted, marooned in a sea of hostility and rejection, imprisoned by the rampant negativity and ‘hate autism’ messages that even now still dominate the public ‘discussion’ about autism. Raised to hate this core part of our very identity and selves, to collude with the concept of autism as a ‘tragedy’ and ourselves as a ‘burden’, to believe that we are worthless, unable to contribute anything to the world, many believed they would be better off dead – something many NTs were only too inclined to agree with. At best, we were objects of pity and ‘charity’, beneficiaries of the ‘poor thing, they can’t help it’ attitude. Even if we had no diagnosis, especially if we were around before diagnosis was possible, we were nonetheless conditioned to hate our ‘weirdness’. To devalue ourselves, and our ways. To deny our strengths, and at least attempt to conceal our ‘weaknesses’ or our ‘strange’ behaviours. To put up the pretense of ‘normality’, and to hope, vainly, that some day we would truly attain it, if we only tried hard enough. Certainly nearly all of us have been given that message - that if we’d ‘only try harder’ we could fit in, could be ‘just like anyone else’. We believed it. We didn’t believe in ourselves. What, after all, was there to believe in? A deficient, sub-standard creature, the only one (or so we often believed) like it in the world? A ‘lemon’ on the human production line? The rest of the world, we reasoned, could not be wrong and we right.

And then we started to meet. We started to build connections, friendships, even sometimes relationships, with each other. We began to look at each other, and think, hey, this person’s autistic, yet I really like them, they aren’t awful, aren’t worthless, aren’t a pathetic weakling… maybe I’m not so bad either… And so the first precious stirrings of self-esteem emerged. We began to see just how badly we had been, and still were (and are, and are!), being treated. We began to reject such treatment, to form a new and more positive way of looking at ourselves and each other. We began to openly reject the negative images of autism, and to campaign for ‘autism rights’. We began to see that they are, in fact, simply human rights – voting ourselves back into the human race, back up from the subhuman state the ‘experts’ and society had condemned (and in many cases are still condemning) us to.

It happened like this for me, and for so many others. I floundered and stumbled my way through the world, hating myself, concealing my ‘weirdness’ as best as I could, trying vainly to be normal, to be accepted. Then I finally began to realise that I had AS, and on the heels of that, found the AS community online, and then face to face, ‘in real life’. And it was …amazing. For the first time, I made real friends, with people who really seemed to like me, to value me, to value my opinions and want to spend time with me. Only then did I realize just how badly my earlier attempts at forming friendships had gone, how the usual fare there was coolness, being ‘shut out’, being told I was ‘just too strange’, asked ‘what planet did I come from’, laughed at, or even outright rejected. It had been painfully obvious that very few wanted to know me – and I’d grown used to that, resigned myself to the ‘fact’ that I was ‘just lousy at making friends’, and eventually given up trying to do so. But in the autistic community, I found understanding, support, and simple acceptance of who and what I am. The transition from ‘weird nobody’ to ‘esteemed friend’ was a treasure beyond dreams. The first time I realised this, I cried.

Several years on, it is still the case that if I want positive reinforcement of my place in the world, if I want to feel like I have something worthwhile to contribute, if I simply want to feel that I’m a likeable, okay sort of person, then the autism community is the place I go. Nowhere else do I get such reinforcement, such validation, such emotional support. The rest of the world may not value me, but my autistic friends do.

And I value them. This validation and reinforcement, this acceptance and even embracing of each other as autistics, is the single biggest gift we can give to ourselves and to every other autistic person in the world. Yes, we have our problems, our splits and feuds and divisions, our trolls and our undesirables. We’re not going to magically love every other autistic person we meet. And yes, we have ‘issues’ that need sorting out amongst us. But don’t walk away if you encounter problems – because this is it folks – this is our community, there is nowhere else for us to go, nowhere that will accept us, embrace us and understand us. It’s the foundation of our self-esteem, the place where we can be ourselves amongst our peers, the place where we learn to accept ourselves and our autism, to recast our entire self-image, and potentially our entire lives. It’s also the base from which we can go out into the world and change it, change the whole ‘discussion’ on autism, and secure better treatment for all of us, whatever our ‘functioning’ level, whatever our formal diagnosis or lack of it. In other words, it’s the pathway to freedom.

Alone, we flounder and fall. Alone, we will go on suffering, each in our own private hells, with no hope of remission, unless and until the world finds some way to exterminate us. If we don’t have community, we die, literally or in our spirits. If we don’t have community, we will sink without a trace, becoming lost, wandering souls without a ‘home’. Too many of us are still lost, still ‘out there in the wilderness’, still immersed in hating their autism, and themselves. A lot, I suspect, don’t even know the community exists, and I truly feel for them. (Who says we don’t have empathy?!)

So embrace the autism community, and the Autism Positivity it engenders. It saves lives.

Saturday, 27 April 2013

Autism Matters - Education on Autism, By an Autistic
This website is the brainchild of a friend of mine, previously living in NZ, now back in the UK. She's developing her business of educating people and organisations about autism, from the viewpoint of an autistic - a departure from the usual parent or professional 'consultants'. So if anyone in the UK is on the lookout for someone to teach their group or organisation about autism, this is the person to contact.

Things I Don't Understand - Number Three

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


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

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

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

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

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

I truly, truly, don’t get them.

Saturday, 20 April 2013

Why We Need Autistic-only Groups

A furore erupted recently in a Facebook group for those on the spectrum, which turned extremely acrimonious. It began when an NT mother of an autistic child joined the group, looking for advice on how to best help her autistic child. Said advice was given, and proved very helpful. All fine so far… until more NT parents of autistics started joining, and after a bit some autistics expressed dissatisfaction with so many NTs joining what was meant to be an ‘autie-only’ group. The proverbial hit the fan, people took sides, and the debate became long, emotional and extremely tense and intense. I’m not in this particular group, but was alerted to it by some who are. One criticism that was frequently hurled, I understand, was that keeping NTs out was ‘discriminatory’.

This concept of ‘discrimination’ is one that needs looking at more closely however. There are basically two groups of ‘exclusionary’ groups. The first is that of what I will call ‘dominant groups’, ie the ones with the power. For these ‘dominant-only’ groups – or associations, or professions, etc – the purpose of exclusion is to maintain and perpetuate their ‘Power Over’, ie power over the lives of others not ‘like them’. It shores up the “-isms” of society (racism, sexism, classism, etc, etc), and so opening up such groups, associations, etc, to ‘others’, is an essential part of eliminating discrimination and inequality. It’s not that the ‘others’ desperately crave the company of the dominants, but that they want to either share the power and privileges more equally, or demolish them altogether. This is the context in which cries of ‘discrimination’ have been most frequently heard, and rightly so.

The other type of ‘exclusionary’ group is that of ‘minority’ groups (even if numerically, as in the case of women, they aren’t actually a minority) - the powerless, the excluded, the marginalised, the discriminated against. Like those of the dominant group, the result of their coming together is empowerment – but of themselves as themselves, not over others. ‘Power To’, not ‘Power Over’. It involves a lot of what in the early days of the feminist movement was called ‘consciousness-raising’, the “you mean you do that/have felt that/had that happen too? I thought I was the only one!” reaction. Connections are made, analyses of their situation shaped, agendas for change formulated, and eventually action is taken, and society begins – however glacially – to change. Exclusion is an important part of this process, or those personal truths will never be realised, analyses formed, etc, and the minority group’s perspective will continue to be overshadowed by the dominant people’s version of ‘reality’ - to the detriment of the minority. Discrimination is therefore a means of perpetuating privilege, that is practised by dominants, not minorities. Minority peoples, by definition, do not have the power to establish or enforce ‘discrimination’.

I am NOT saying there isn’t a place for some groups to be ‘mixed’, there most definitely is, provided the agenda is clear, and the ‘dominants’ are established allies. However, as well as needing minority-only groups for this consciousness-raising process to happen, there are certain delicate difficulties if all groups meant for ‘minorities’ to get together end up with ‘dominants’ in them. Firstly, there’s the simple issue of time and energy. On the one hand, we on the spectrum want NTs to listen to us, and frequently demand they do. We especially want NT parents of autistic children to listen to us, and are pleased when that happens. BUT – and it’s a big BUT – and I have to say this plainly – we are not here solely to act as unpaid counsellors, research assistants, child development experts, hand-holders, etc, to NTs, even those with autistic children. We certainly do want to help, we just don’t want to spend our whole time doing it (especially in groups which are meant to be for ‘us’). Our own lives are almost always fraught with difficulty, and need our constant attention. Moreover, there is a fine line between ‘feeling useful’ and ‘feeling used’. (Let me say here that I have been on the other side of this equation. Back in the 80s, I became involved in NZ’s anti-racism movement. Some of us Pakehas [white New Zealanders] at first asked the Maori activists lots of questions about racism, Maori history, culture, etc, etc. They answered patiently at first, then became increasingly terse. Finally, one Maori woman put it bluntly – “We’re not here to educate you, do your own research!”)

Secondly, we need ‘safe spaces’ – places where we can complain, bitch, moan, vent and even whinge about life, NTs, our difficulties, and how the world treats us. We need to be able to do this without worrying about NTs getting their feelings hurt, or getting defensive, or angry, or criticising us, or telling us how we should ‘fix’ our problems, or other negative reactions. We need to have space where we can ‘just be ourselves’, and not have to constantly explain why we feel this, what we mean by that, what this word or expression means, or to justify ourselves to anyone who hasn’t had the type of experiences or reactions or thoughts we’ve had. Somewhere we don’t have to censor ourselves, as we have to do so often in the ‘NT world’. We need somewhere that we can feel safe. It seems to me this should be a minimum requirement for any minority group - a starting point where its members can relax, share, vent, sympathise with others’ struggles, give each other advice, etc; and just generally be themselves. Minority groups (including auties) are sometimes wary of admitting this, in case it sounds like we want to be apart from the dominants solely so we can have ‘hate the dominant’ sessions, which is not really what is meant. It’s about ‘us’, not ‘them’.

In short, we need autistic-only groups so that when we come out of them and interact with NTs in whatever setting, we do so from a position of personal empowerment, and something like equality, and of knowing what we want and need. Is this really such a big ask?

Wednesday, 3 April 2013

Autism Acceptance Day

On this day, Autism Acceptance Day, let’s make a commitment to changing the way autism is approached or talked about. For too long, we’ve had to put up with all kinds of negative talk about autism, been forced to listen as it (or autistic people) are referred to as a tragedy, a monster, a thief of ‘good’ children, an epidemic or disease, a breaker of marriages, a trial and a burden, on and on, there seems no end to the insulting terms they heap on us. (Why, anyone would think we had no feelings!) (Yes, folks, that’s sarcasm.) All of these come from a viewpoint of seeing autistics as ‘wrong’ or ‘deficient’, simply because we are not behaving like NTs. Any way in which we differ from ‘normals’ is seen as a bad thing, we know this all too well by now. Comparisons are never in our favour.

But it goes deeper than that. NTs are supposed to have greater empathy and understanding of others, and the ability to ‘put themselves in another’s place’ – yet all those abilities just fly out the window when it comes to us. Most seem incapable of even beginning to ‘get’ us. I believe this is due to them completely not understanding that autism is NOT a set of behaviours (though that’s how it’s usually diagnosed), but rather a completely different neurological mode, one which is in-built, and which causes us to perceive, sense, think about, view and approach the world differently. Until NTs understand that, they will never understand anything about us - and will continue to assume that our behaviour is a matter of lack of self-control or ‘over-indulgent’ parents or an ‘anti-social’ disposition, or simply arrogance, selfishness, rudeness, etc.

But what if they approached us with this new understanding of our neurology? Imagine if parents, for instance, instead of just assuming their child’s meltdown is a random, inexplicable thing or a temper tantrum, realised their child’s extreme sensory sensitivity, and looked at everyday things from their perspective. A bee is buzzing in the window, a dog is barking somewhere, the neighbour’s mowing their lawn right outside, the radio is jangling tunes from the kitchen, the TV is blaring, their siblings are quarrelling, a car is honking… And that’s just the noises. If smells, textures, sights and movement are factored in, the parent might suddenly see that their child’s meltdowns don’t really ‘come out of nowhere’, but have an entire environmental history behind them.

Or what if instead of getting exasperated when their child rips off their clothes every chance they get, assuming the child does it out of ‘defiance’, or that it’s ‘just part of the inexplicability’ of autism, the parents stopped and asked themselves - what is it about the clothes that so bothers them? Is the label scratchy, or the fabric irritating? Is their skin hyper-sensitive – or are they the opposite, hypo-sensitive to cold, the clothes seeming to them an unnecessary restriction? Once a parent begins to approach the issue from this perspective, it will seem less insurmountable.

Or imagine if someone took the time to ask themselves why an autistic child – or adult – likes to spend so many hours flicking their hand in front of their eyes, or spinning wheels on toy cars, or staring at an object. Imagine if they grasped that the autistic may in fact be trying to make sense of something, or confirm that some things always stay the same, or always move in the same way, even in a world that to us is highly confusing, constantly changing and swirling – that they may, in fact, be something of a ‘natural scientist’!

And what if, instead of dismissing a non-verbal child or adult on the spectrum as ‘not all there’, and believing that there’s ‘no point’ in trying to communicate with them, people applied the principle of ‘presumption of intelligence’, and did everything they could to facilitate communication, by whichever means works best for that autistic person – even if it’s not speech, even if it’s slow, even if the person has bad days when they aren’t capable of communication at all, or seem to have forgotten all they previously learnt, or have to resort to assisting devices some of the time, but are able to speak at others. Imagine if it was understood that our verbal abilities are fluid rather than fixed. Then further imagine if the non-verbal were treated with respect and kindness, instead of being segregated into ‘dummy classes’ or institutions or other kinds of ‘holding pens’, or abused by their caregivers – or even murdered by them.

Imagine too a world where any autistic child was allowed to stim, to tap and spin and jiggle and rock and hum, to hop or skip instead of walking if they felt like it, to sit how they feel most comfortable, to crack jokes that others don’t understand or do the same things in the same way, day after day. Imagine if their ‘obsessions’ were reframed as ‘special interests’, and incorporated into their daily activities whenever possible – as a matter of course. Imagine if their individuality was respected, acknowledged and validated, their ‘quirkiness’ seen not as ‘bad behaviour’ but as evidence of a totally unique perspective on the world, offering new insights on it. Imagine if that was also the case for adults on the spectrum.

Imagine if NTs, instead of assuming rudeness etc in their autistic workmate, classmate, family member, neighbour, etc, were able to stop and realise that the person wasn’t intending anything negative, but is rather simply straightforward and honest, perhaps lacking a few social graces, but also lacking the ability to indulge in the ‘games-playing’, manipulations, or subtle sabotages that are the hallmark of so many NT interactions. Imagine if they could come to appreciate us instead of just reacting negatively.

This list of ‘imagine ifs’ could be much, much longer. But my point is that all of this is possible – if only we could move the ‘dialogue’ about autism (which isn’t currently really a dialogue at all, since that implies an equality of voices, but rather a rubbishing) into a reframing of autism in the public mind as not something negative or scary, but rather a different way of being human, as authentic as the NT way, and just as worthy of respect. Imagine what that would be like.

Imagine it – and then let’s go out and make this ‘Autism Acceptance Day’ the day – and then the month, the year, the decade - we start to make it come true. Because every day should be Autism Acceptance Day.