Friday, 25 October 2013

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 fa├žade 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!

Monday, 21 October 2013

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.

Tuesday, 1 October 2013

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.”