THE AUTISTIC BILL OF RIGHTS

THE AUTISTIC BILL OF RIGHTS

by Penni Winter

It being self-evident that all autistics are human beings, we are entitled to enjoy, in full, the same rights as other human beings, including but not limited to the following –

1) The right to exist. We have the right to enter and stay in the world on the same terms as anyone else, and to not, at any stage of our existence, be subjected to any form of genetic testing, sperm or embryonic selection, abortion, murder, euthanasia or other types of genocide, solely on the grounds of our presumed or actual autism, or the alleged ‘burden’ we place on our families and caregivers.

2) The right to be our true selves. At all ages and stages of our existence, we have the right to be openly and thoroughly autistic, including the right to stim or exhibit other obviously autistic behaviour, without punitive suppression, harsh ‘treatments’ designed to ‘therapise’ our autism out of existence, or pressure to adopt a futile and taxing façade of ‘normality’.

3) The right to respect. We have the right to be treated with dignity and respect at all times and in all places, regardless of our age, perceived intelligence, level of functioning, ability to communicate, or any co-existing conditions we may have; and to not be the recipient of any form of violence or abuse whatsoever.

4) The right to a positive self-identity. We have the right to reject the concept of autism as a ‘tragedy’ or ‘disease’ in need of ‘cure’, to celebrate being autistic, to define our own autistic identity, and to assert being autistic as a healthy, valid alternative way of being human, no matter our age, functioning level, etc, as above.

5) The right to independence. We have the right to enjoy as much independence as we are individually capable of, to whatever extent and in whatever manner we choose, to have all necessary supports to enable this, and to not be incarcerated against our will, except where and until when a non-autistic would be incarcerated under the same circumstances.

6) The right to gather. We have the right to associate with other autistics on our own terms, to exclude non-autistics from those gatherings if we so choose, and to develop our autistic culture, without scorn, censure, interference or ‘management’, however well-intentioned, from and by non-autistics.

7) The right to political expression. We have the right, if we so choose, to advocate for these and further rights for all autistics, and to challenge the prevailing attitudes and practises around autism, without being patronised, ignored, excluded, scorned, attacked or told we are ‘not autistic enough’, on any grounds whatsoever.

8) The right to be included. We have the right to demand inclusion, in more than token numbers, on and in all and any decision- or policy-making bodies or proceedings about the status, rights, treatment or care of autistics, both in general, and in relation to any autistic individual or individuals.

“Nothing About Us, Without Us!”

About That Aspie Rudeness...

I’ve been thinking lately about how we autistics are so often dubbed ‘rude’, when we certainly don’t mean to be. So why do we get accused of it? Here’s my list of possible reasons – and bear in mind that in any given situation, it’s probable that several factors are operating together.

1) No instinctive understanding of unwritten social ‘rules’. We don’t know all the little do’s and don’ts that NTs seem to be born knowing, or learn before they leave kindergarten. So all too frequently, we inadvertently blunder right through those rules.

2) No instinctive ability to read other people’s body language. This adds to 1), as we don’t see the non-verbal signals that tell us we’ve dropped a clanger. So we go on blithely unaware, until bang - a whole bunch of stuff comes crashing down on our bewildered heads.

3) No ‘hidden agenda’. Often some of the things we say, if said by an NT, would have all sorts of complex, implied layers of judgement and criticism. So NTs assume we mean them too - when in fact, if we say, for instance, that someone is fat, unemployed or has a big nose, we usually mean they are fat, unemployed or have a big nose. End of.

4) Terminal honesty and straightforwardness. This is intertwined with 1), 2), and 3). We’re very honest, with a tendency to speak first, and think later! Honesty is a good quality overall, but it can be interpreted as deliberate rudeness by NTs who don’t understand.

5) Little ability to do small talk. We don’t pick up all the unspoken messages being exchanged through this (I was in my 50s before I even realised these messages existed), and so it seems pointless, frustrating and deeply boring to us. But if we don’t do it, we can come across as surly or disinterested in other people.

6) Don’t like eye contact. If we’re not looking at people when we speak or listen to them, this can also be interpreted by NTs that we’re not interested in them or what they’re saying.  NOTE: Pretending to be interested, even if you’re not, is considered polite social behaviour by NTs.

7) Auditory processing difficulties. These tend to make us come across as ‘slow’ or disinterested, when in fact we are simply struggling to hear/interpret what’s being said, especially in large group situations, eg staffroom morning tea sessions. But avoiding them without explanation often appears to others like we don’t like/are snubbing them.

8) Prosopagnosia, or face-blindness. If we don’t recognise someone, and hence don’t speak to them, or walk right by them, this can also come across as snubbing or rudeness.

9) Alexithymia. Difficulties with recognising, managing and expressing our emotions means our emotional reactions can come across as ‘inappropriate’, in when, where and how the emotion is expressed. Again, this can be seen as rude by others.

10) Difficulty moderating our voice tone or volume. Some aspies/auties talk very loudly, and this can be interpreted as ‘rude’ too, in the sense it doesn’t consider other’s needs. Also, if we habitually talk in a monotone, this tends to be interpreted as us being ‘blatantly’ bored or disinterested, and hence rude, by NT rules.

I want to emphasise here that though most of these factors are intrinsically bound up with our autism, that doesn’t mean we can’t learn to overcome at least some of them, to some degree, and/or learn ways to avoid being misunderstood. What we learn, and how much, and how well we’re able to put it into practise, will of course differ from one autie to another, one situation to another. It may be for instance that we never master eye contact (though we may be able to approximate it, and fool people into thinking we’re looking them in the eye), but we can learn how to temper our honesty with more ‘polite’ phrasing or words, or to moderate our voice volume and tone. Or we might be able to master at least a little ‘small talk’, but we’re stuck with the face-blindness. (And of course some of these factors I don’t consider need changing at all, such as our lack of those hidden agendas.)

Of course, none of the above is an excuse for any autistic to be deliberately rude either. If we have learnt at least some social rules (for instance not to say certain things to a boss, teacher or other authority figure) we are as obligated to follow those rules, and as liable to criticism for failing them, as any NT would be in the same situation. Being autistic is not a carte blanche for us to say and do whatever we want, whenever we want, to whomever we want, however we want.

There are probably other factors that I haven’t thought of, and it’s likely that many of them we can’t (or shouldn’t) do much about, but at least if we know the most likely reasons why we’re being called ‘rude’, then we have some chance of either a) finding a way to explain ourselves, b) finding ways to improve our ‘social performance’, or at least c) not being so totally overwhelmed and upset by the accusations of others, that we end up dumping on ourself for being ‘bad’ in some way. We are what we are, and while we’re not exempt from social obligations, we do also have the right to simply be ourselves.

The Autism Label

Lately, I’ve seen discussion of the autism ‘label’ happen in quite a few places. It seems many are still confused over the difference between a ‘label’ and an ‘identity’, and unhappy about “being labelled”. I’ve written on labels and identities before (here and here), but I feel the time is right to say just a bit more about this issue.

Put simply, a ‘label’ is what others put on something or someone. It can be neutral, as in canned foods -“Baked Beans” “Onion Soup”, medical/diagnostic - “Arthritis”, “Aspergers Syndrome”, or value-laden, which can be positive or negative – “expert”, “loser”, etc.

An ‘identity’, on the other hand, is what we form for ourselves. We may take a ‘label’ and form an identity around it, use it to anchor our sense of self, or it may come from things that arise out of us, such as being ‘artistic’, ‘a good baker’, or ‘reliable’.

The impression I get is that when people resist/reject the ‘label’ of autism, it’s either:-

(a) The negative public image of autism/aspergers, means they fear becoming ‘pigeonholed’, viewed/judged by others as being ‘limited’, when in fact they know they are capable of many things which autistics are ‘not supposed’ to be able to do; or -

(b) They feel that their autism/aspergers is only part of who they are, as a person, and fear being viewed only through the lens of autism, as though explains ‘everything’ about them.

The answer to the first is of course to get ourselves out there, openly autistic, doing things and demolishing the stereotypical ideas about what we’re capable of, just like many other groups seeking liberation have had to. (I’m old enough to remember when being a woman or black meant you were considered limited in both intelligence and capabilities.) The second is a bit harder to counteract, as forming our identities is such a very personal thing.

My own identity revolves around three threads of my Self – being aspie, being creative, and being spiritual. Other threads – such as my gender, sexuality, nationality, family background, upbringing, interests, experiences and education - have also gone into weaving ‘the me that is me’, yet those three threads are ‘core’. If you know and understand them, you know and understand me. And while I’ve long known that my creativity and spirituality are so intertwined they’re effectively two aspects of the same thing, in recent years I’ve realised just how closely my aspieness is also intertwined with them. It shapes my creativity profoundly – in the words and images I use, in the way my brain and hands shape them, in the rhythms of how and when I manifest my creativity, but most especially in how I’ve never in my life been able to produce a ‘mainstream’ piece of art. My writings and paintings have never been ‘like what others produce’, and now I know why. Similarly, I now see that my spirituality is also shaped by my AS, in that it’s totally individualistic, independent of ‘established’ thought and religions, and very much about me and my relationship with the Creator, rather than conforming to the pressure of social norms, ‘wanting to belong’ somewhere, or fearing the ‘wrath of God’ for my ‘sins’ – or, for that matter, about feeling any need to ‘convert’ others to my way of thinking.

In short, I find it difficult (and unnecessary) to separate out which bit of my core identity is aspie, which bit creative, and which is spiritual. It’s all one to me. What I do know is, that denying or diminishing any one of these threads, diminishes me as a person, and denies an essential part of who I am. After all, AS has a pretty comprehensive affect on our cognitive styles, our emotional reactions and expressions, our styles of and capabilities for social interaction, even our physical and sensory reactions, so how likely is it that it’s not having some effect on how we express our individuality? To put it another way, identifying as aspie/autie doesn’t explain everything about you, but it’s likely that it does colour how you express that ‘everything’.

I also want to point out that no-one usually resists ‘labels’ that are positive or neutral – it’s only the labels that are viewed negatively by society at large, that we tend to resist. Think of the issue of using ‘person-first language’ to describe autistic people, for instance. As many autistics have asked, why would anyone want to avoid ‘labelling’ a person as autistic, if being autistic wasn’t considered a negative thing by most? Yet reframing autism as a ‘difference’, a condition that presents with both challenges and merits, could go a long way to demolishing any need to avoid ‘labelling’.

I ended my first post on this subject with the following words. Even two years on, I really can’t think of any better way to put it. “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.”

Just a Word About Comments and Links...

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

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

Things I Don't Understand - Number Five

Lately, I often find myself walking past young people in the street, or at the supermarket, mall, etc, who have their cellphone turned up loud, playing music, sometimes with earbuds in but often not. The resulting music – which is generally some kind of rap or the latest shallow pop sensation - is tinny, jangly and decidedly irritating. I know they probably don’t care what damage it’s doing to their hearing (young people don’t generally worry about that sort of thing), but I’m mystified as to why they have it playing at all, in those environments. It’s not like you can get the full effect of the music through the tiny speaker of a cellphone. Plus it’s often at least half-drowned out by the clamour of other street or background noise, supermarket or mall muzak, etc, etc. So what’s the point? Is it a sort of subtle adolescent bragging or showing off, advertising that they’ve got a cellphone? (Though pretty much everyone over twelve does, these days.) Are they so addicted to their favourite music they’ve got to have it playing 24/7, no matter what else is going on? Is a trendy thing? Am I turning into an old fogey? Or is it perhaps an NT thing, of wanting/liking noise all the time? I’m puzzled – not to mention overloaded by the aural onslaught.

It’s not that I dislike music, because I certainly don’t. (Well, some anyway. I don’t like rap, or most of those shallow Latest Sensation singers, which I admit doesn’t help. But that’s not my main point.) I simply prefer to listen to it in peace at home, with no other distractions, and through decent sized speakers, so I can get the full effect, and full enjoyment. It’s a private, relaxation thing, not a ‘let’s play rap all day long while we hang out at the mall’ thing.

I can’t help wondering if it’s somehow similar to another NT phenomenon I’ve noticed over the years, and that is people’s holiday habits. In NZ, it’s long been the traditional summer-holiday thing to load up the car and trot off to some beachside campground, squeezing in their tent or caravan or motor home next to dozens of others doing the same thing. Or they rent a holiday home (a “bach”, in Kiwispeak), with only slightly more room, also in some popular seaside place. It’s always mystified me. These are people who live cheek-by-jowl in the cities and main towns, surrounded by crowds every day – so what do they do for their summer break? Go somewhere they are even more cheek-by-jowl with other people!! You’d think they’d want some solitude, some peace and quiet, but no.

It’s not that I don’t understand that NTs don’t receive the full sensory onslaught we do, that they can somehow filter a lot of it out. I also understand that they are generally far more socially-inclined, or at least able to tolerate the constant company of others more easily. But even so… surely they must occasionally want something a bit more restful? Or at least a temporary absence or lessening of noise/people? A beach with no-one else around, a walk down the street with no over-the-top racket, a stroll through the majestic hush of our native forests, with only birdsong for company? Perhaps some do, and I just don’t notice them. Or perhaps it’s just the young people who like the noise and clamour, so their parents take them to these places. But then many parents seem to like these kinds of environments too…

I’m confused. And overwhelmed. And wondering if I’ll ever understand NTs.

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.

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.