Why I Stand In Solidarity With The 'Low-Functioning'

I've been trying to write about this issue for several months, approaching it from various angles, and then getting bogged down and abandoning it. And yet I feel it’s a very important and often controversial one. There are many who tell apparently ‘high-functioning’ autistic adults that they ‘cannot speak’ for all autistics, because they aren't ‘really’ autistic, or are ‘not autistic enough’. There are those who say high-functioning autistics shouldn't object to how the low-functioning are treated, because we ‘can’t understand’ how ‘awful’ they make life for their caregivers and families, and it’s ‘for their own good’. And so on and so forth. And these tactics often work. I have encountered aspies who refuse to identify as ‘autistic’, because, in the words of one, “I’m not autistic, because I’m intelligent”.

Well I DO identify as autistic, AND with those ‘low-functioning’, I refuse to be separated from them, and so I've decided I’m just going to say how I feel, in an attempt to make clear my reasons why.

Reason One - Defeating the ‘Divide and Conquer’ thing. Many autism ‘experts’, parents, etc, and their organisations, take the stance that “It’s all right for you high-functioning types, but ‘these people’ have ‘real’ problems, which can only be addressed by this drastic treatment/long hours of therapy/punitive suppression/etc/etc/etc”. What this effectively says is “We’ll leave you alone as long as you can pass for ‘normal’, and as long as you don’t protest what we’re doing to ‘those people’.” It’s an unspoken but nonetheless potent threat – but also a nonsense, because –

Reason Two - There is no clear dividing line between low and high functioning. Many autistics are able to communicate via the internet, write articles and books that get published, or advocate on behalf of their fellow autistics, but cannot communicate verbally, hold down a regular job, or live independently. Others can, but only with a great deal of support from family or social services. Even those who, like me, are fully ‘independent’, function best with help from those around them. We all have problems, are prone to break down, overload, melt down, etc, etc. None of us are ‘high-functioning’ in all areas of our lives. NONE.

Reason Three - All autistics are entitled to respect, no matter what their functioning level. Many are labelled ‘low-functioning’ because of their lack of verbal speech, but if/when they finally find a way to communicate, a perfectly functional intelligence is revealed. But even if this is not the case – if they are intellectually disabled, for instance – they are still entitled to be treated well, to have all the rights that I list in my recent ‘Bill of Rights for Autistics’, as well as any other rights that, for instance, the intellectually or physically disabled have or are campaigning for.

Reason Four - I feel more in common with them than with NTs. NTs see me ‘looking normal’, and think I ‘must’ like that, must want to be identified with them, that it’s a compliment if they tell me how ‘normal’ I seem. When actually, it’s an elaborate front I've evolved to cope with life, and frequently a strain to keep up. I often feel like a fake doing it, and long to reveal more of my true self. I do not identify with NTs in general, or want to. Underneath, I know I am far more like that kid rocking and flapping in the corner than any of them suspect. Underneath, I understand why he rocks and flaps – and even do it myself, when no-one’s looking. Because -

Reason Five - There is only one autism. I’ve said this before, and I’m saying it again – at the core, we are all equally autistic. The big difference between high and low functioning is not ‘how much autism we have’, but ‘how well we can pass for normal’, ie how many social, communicative and life skills we are able to learn. If scientists, doctors, etc, really want to help autistics, they should be researching why some autistics can learn these skills, learn to talk, etc, and others can’t, what part of our brains determines this.

For my part, I can only say this.

I will not be separated.

I will not be disempowered.

I will not be silenced.

I will not have my true, underlying nature denied.

I will not stop being autistic, and championing the right of EVERY autistic to BE autistic, to be free, and to be given the human rights they so desperately need.

I stand in solidarity, and I invite all autistics, low or high functioning, to stand with me.

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.

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.

Autism Is Not An Excuse To Do Nothing

I’ve noticed a disturbing trend in some autistics, especially younger ones, namely that they consider a diagnosis of autism or Aspergers sufficient reason to ‘give up’ on life, or to not attempt anything in the least bit challenging. This was reinforced recently when I read Anita Lesko’s chapter in Different, Not Less, a book about autistic achievements and successful employment. A photojournalist and registered nurse-anaesthetist herself, with a busy life, after her diagnosis she was shocked to find that some saw their diagnosis as “like a death sentence”[1]. Like me, she’d been relieved to finally have an explanation for her ‘difference’, and had assumed others would be the same. Instead, she found people saying that they were “glad” they hadn’t had a diagnosis before then, because that would have meant that their life “would have been over” even sooner. She saw otherwise healthy young people “who had given up on living”. When Anita asked one 22-year-old woman if she had a job, she looked up from her needlepoint and said indignantly “I’m not ready for that!”

Don’t get me wrong here. I’m all too familiar with the problems aspies have in employment and education, and with the world in general, and the huge stresses we can experience. I know how it can lead to mental or even physical illness, and how we can end up ‘dropping out’ of jobs, education, etc, etc. I most whole-heartedly agree we need more accommodations and support when we do go into higher education, training or jobs. And I strongly support the idea of young autistics taking a ‘gap year’ – or more - between school and further education. But none of that is either reason or excuse to sit back and do nothing at all.

Perhaps this is one area where we older aspies, diagnosed later in life, have an advantage. We’ve been out in the world, doing all sorts of things that autistics aren’t ‘supposed’ to be able to do, and learnt both our strengths and our limits. We know what we’re capable of, because we’ve already done it. So the idea that we should ‘not even try’ is ludicrous to most of us. My own life is an example of this. I joined the workforce for the first time at 17 (totally ‘unready’, but I did it anyway), and have worked at all manner of jobs since, with varying degrees of success. Moreover, though I’ve spent a lot of time out of the workforce due to chronic illness, most years that I wasn’t too sick, I’ve done either university study or some kind of community education, back in the 80s I was in the feminist and anti-racism movements, while in the 90s I was into women’s spirituality and New Age activities. I’ve also been married to a man, spent nine years ‘married’ to a woman, raised a child, done quite a bit of volunteer work, not to mention my own creative work, amongst many other things. And yes, it was often very hard, and if I’d had more support, understanding and mentoring, maybe it would have been so much easier, I would have succeeded better, probably wouldn’t have gotten ill, and would have had a different life altogether… But, but, BUT!! NO WAY do I think I should have just sat at home and not even tried. Where on earth would that have gotten me?

These young people seem to have got hold of distorted, not to mention very limited, ideas of what being autistic means, in terms of their human potential. Anita implies their parents are largely to blame, as they drag their children from therapist to therapist, so that the children “begin to think there must be something wrong with them… [which becomes] a self-fulfilling prophecy.” Societal attitudes that autism is a ‘disease’ and a ‘tragedy’, and ‘expert’ opinions which focus on autistic ‘deficiencies’ and not on our strengths, must also share the blame. They have sucked these autistics into sharing their negativity, and are creating the very ‘burden’ that society fears. And yes, I know there are many young people with autism who are NOT like this at all, and which I loudly cheer! My concern however is that even some are, that they’re sitting around at home, lost and cut off from their own potential, believing that they “can’t” fully take part in all that life has to offer.

By doing so, they may not suffer various stresses – but they never experience the highlights of life either. They miss out on the joy and satisfaction of pouring yourself into an interesting course of study, and the absorbing and worthwhile career that can follow it. They never know the fulfilment of finally graduating after years of hard work, the honest praise of bosses and co-workers for a job well done, or the delights (and the challenges) of having relationships, children, community involvement, etc, etc.  They never experience the personal growth and development, the plumbing of their depths and testing of their limits, that all of these can bring. They’re cut off from the world, and it’s all so, so unnecessary! (Anita points out another reason for not just sitting back and giving up – namely that these young people can end up eventually in institutions or homes when their parents are gone, a valid point.)

Yes, we find so many things hugely more challenging that NTs do, and it’s up to each individual to decide how much and what they can do, but some challenges are an inevitable part of life, for everyone. These challenges fall into several categories – the ones that we can cope with okay, the ones that need to be ‘managed’ or ‘mitigated’, the ones that we should totally avoid, and the ones that will really stretch us, but which we wouldn’t miss for the world. To go back to my own life for a moment, the autism conference I recently attended fell into the latter category for me. I got there at all only because of a lot of help from my friends, it involved weeks of preparation, long bus journeys, coping with lots of noise, crowds and various anxieties, long days filled with lots of talk and walking to and fro, etc, etc, and afterwards I was exhausted, both physically and emotionally, even falling ill for a while. But I got so much out of it too – not only did I get to spend some great times with my fellow autistics, I believe the conference itself was a hugely important event, hopefully a turning point for autistics in NZ, and I am so glad I went.

Not that I am saying we all need to attend conferences, but rather that we need to teach these young people not to shy away from all difficulties that come their way. We need to show them that being diagnosed autistic is not the end of their life, just the beginning of a new phase of it. That there are ways to cope with difficulties, to ‘work around’ problems, and that we older aspies (as well as the more active younger ones) have wisdom to share about this.

Because we are all capable of so much more than just sitting around doing needlepoint and feeling sorry for ourselves. (I have no special beef against needlepoint, just that if that’s all you’re doing, it’s not much of a life.) If an autistic finds or feels that they can’t do one thing, then they should try another. If one job or profession doesn’t suit, choose a different one. If a young person doesn’t feel ready yet for university, they could still be preparing for it. Or they could do polytech study or on-the-job training instead. They could do volunteer work. The choices are endless. But what they shouldn’t do, is nothing at all! The supports (where they exist) are meant to help us participate in the world, not to keep us apart from it. And where supports don’t exist, there are still ways to get through.

I want these ‘My-Autism-Is-A-Death-Sentence’ autistics to get up off their behinds and go out into the world, in one way or another, to do something with their lives, because their idea that ‘their life is over’ when they are diagnosed, is based on a totally wrong conception of what having autism/Aspergers means. As Anita says, “It’s not a disease, it’s a way of life.” Though some would deny it, we are human beings, with all the chances and choices, the freedoms and obligations, that this means. As tempting as it can be sometimes to swear permanent retreat, especially at times of overload (that FTW feeling), all autistics need to be part of the world, in whatever way, and as much, as we can individually do, in order to have a life worth living.

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[1] This and subsequent references are from Anita’s chapter in Different, Not Less, edited by Temple Grandin, 2012, Future Horizons, Arlington, Texas; pages 205 – 206.

Altogether Autism Conference Speech

I haven't written here for awhile, as I've been busy preparing and practising a short speech I gave as one of a panel of aspies, at the Altogether Autism Conference, last week in Hamilton, New Zealand. I decided to include the full speech here, in case anyone is interested.

"Hello people, my name is Penni Winter, and I’m what’s known as a self-diagnosed, peer-confirmed aspie, or person with Aspergers. What this means, in my case, that it took about two or three years of intensive research and reading before I could accept this new identity, and it took more years and meeting with other autistics before I felt comfortable in it. It certainly wasn’t a step I took lightly, or on some kind of whim.

I always knew that I was ‘different’ ever since I was a young child, and my life certainly hasn’t been an easy one, as I basically stumbled and bumbled my way through a world that I didn’t understand, and which didn’t understand me. I suffered along the way a great deal of personal misery, not to mention chronic depression and low self-esteem. I spent decades trying to either figure out why I’m ‘different’, or to transform myself into something more ‘normal’, or to simply hide the shame of my ‘difference’. I failed badly at all of these tasks, and eventually concluded there was no label that fit me, that I was just an inferior specimen, a sort of lemon off the human production line.

Then several years back, while I was working as a teacher aide, I was assigned one term to working with a young girl with Aspergers. I had heard of Aspergers, but didn’t really know anything about it, so I decided to do some research. Imagine my shock when I recognised not just my student, but myself, in the descriptions. For the first time I saw all my idiosyncrasies listed in stark black and white. It was a revelation, just when I’d decided there was no explanation for my ‘weirdness’. Nonetheless, for a long time, I really struggled with accepting the idea of being autistic. In fact, my initial reaction was along the lines of - “Who, me? Autistic? No *expletive-deleted* way!”

And why? Firstly, because I don’t fit the common stereotypes of someone with autism or Aspergers. I was, and still am, a functional, independent adult, with plenty of verbal ability. I’m also not a child, or male, or any kind of computer geek or trainspotting nerd, I’m perfectly capable of empathy and compassion, I’m not an emotionless semi-robot, and I like to think I have a pretty good sense of humour - I can even do sarcasm, though I do often find it difficult to read other people’s sarcasm.

Secondly, the official criteria for autism seemed extremely negative to me, focussing as they do on rather dry clinical descriptions of autistic ‘deficiencies’. If I had read only those, I probably would have ended up rejecting the whole idea of being autistic, because my self-esteem was quite low enough already. Fortunately, during my forays in the library and on the Internet, I stumbled upon autobiographical books written by other autistics who I could identify with, and then forums and Facebook groups run by and for aspies, as I learnt that they – we – call ourselves.  These played a key role in my coming to accept and even embrace my autism, and, eventually, in finally ridding myself of my sense of low self-worth.

Because in the process of getting to know other autistics, I found that the stereotypes I’d held were demolished and the myths were debunked, as the ‘real’ autistics emerged from the shadows. Friendships – which had always been problematic for me – suddenly became much, much easier, as for the first time in my life, I found people ‘on my wavelength’, who thought, felt, acted and reacted ‘just like me’. A common reaction amongst us, when something was shared, was “you mean you do that or feel that too? I thought I was the only one!” So gradually, I began to think, “hmmm, these people are like me, and yet they’re not terrible people, quite the opposite in fact, maybe I’m not so bad either…” And so that huge burden of self-hatred began to slide off my shoulders.

And eventually, I met other autistics not just online, but in real life as well, most especially through ASK (Autistic Spectrum Kiwis), the group that I’m part of today. And they accepted me, just as I am, no need for shame or pretense or hiding my true self anymore. To someone who spent so long lost in a sort of social wilderness, this still seems like a minor miracle, and one which has greatly enhanced my life. I wouldn’t be where I am today, nor I think would I have a life worth living, if it weren’t for my aspie friends and connections. Because we all need our peer groups, and autistics truly are no exception.

So whether it’s for yourself, your child or student, or perhaps a client or patient, I cannot stress too much the importance for autistic people of the support and friendship of others on the spectrum - no matter what age the autistic person is – autistic children have also benefited from meeting their real peers, and making friends with ‘others like me’. But without such support and companionship, even if it’s only online, we are doomed to being always the ‘weirdo’ or the odd one out wherever we go. And I can say from bitter personal experience, that being that kind of permanent outsider is not the path to a meaningful and happy life.

Thank you for listening."

What IS Autism, and why do we differ so much?

I’ve been thinking a good deal lately about what exactly autism is, and why it is that, despite there being a whole range of things we have in common, we differ so much in how we express that autism. As the saying goes ‘if you’ve met one autistic, you’ve met one autistic.” But why is this so?

There are several obvious superficial reasons for our differences, including gender, age cohort, background, co-morbid conditions, and simply individual personalities. Yet it seems to me that none of these truly explain them. The other obvious difference is in our functioning levels – and here, I believe, we get somewhat closer to the crux of ‘what autism is’ – and yet miss it completely.

Let me explain this further. Through my lived experience of autism and several years of keen observation, reading, and listening to my autistic peers, I have come to the following conclusions :-

1) There is only ONE autism. That is, all the different labels or categories of autism, don’t really exist. There is only one condition, and you either have it or you don’t.

2) Autism is not a set of behaviours, but a qualitatively different neurological pattern. This pattern is inborn, immovable, and largely misunderstood. It means that the way we think, process, act, react and express our emotions, and how, where and what we focus on, is radically different to that of NTs.  

3) This different pattern is the one thing all autistics have in common, the ‘base line’ of our autism. The apparent differences between low and high functioning, are largely due to how well we are able to communicate with others. Because –

4) The core or fundamental autistic state is a non-verbal one, probably picture-thinking, reacting to the world viscerally, experiencing it as a wash of sensory feed, focussing on physical objects or our inner images/feelings, far more than on other people. This is where we all seem to start from, as young children. As we grow up, some of us are able to acquire verbal language, through which we become more aware of others, and start to learn concepts and skills. Even as adults, many autistics (including me) still think predominantly in images or surges of feeling, and have to ‘translate’ our thoughts into words to communicate with others. We can also ‘lose our words’ under stress. Nevertheless, it’s pretty obvious that it’s those autistics who have the most translating ability, ie are able to more easily acquire/hang on to/use oral communication, who are most likely to be labelled high-functioning or Aspergers rather than low-functioning or classic autistics. ‘Non-verbal’ equals ‘low-intelligence’, in most people’s eyes. Yet often when these autistics do finally find a way to communicate – eg, via computerised speech devices – they are frequently revealed to have a perfectly functioning intelligence, thank you. (And are often pissed off at those who think otherwise!)

So what, you might ask, about those kids who not only have no language, but lack any other sign of ‘normal’ development, eg aren’t toilet trained, can’t dress themselves, scream constantly, etc? My gut feeling is that again, this is largely due to the communication barrier. If you can’t understand what people are saying to you, how can you grasp what they want of you, in regard to (for example) using the toilet rather than filling your pants? If you don’t even realise that communication is possible, how do you express your pain, except by screaming? Even those of us at the high-functioning end of the spectrum, especially as young children, have had the experience of knowing something, but not realising it needed to be communicated to others, and even when we did realise it, of not having the words to do so.

I admit I am not a scientist or doctor, or researcher of any kind, and my theory might sound strange or even controversial to many. Yet there is some evidence to support it. Consider, for instance, the experiences of a friend of mine, whose child is one of those lower-functioning autistic children – nine years old and non-verbal, not toilet-trained, etc. A while back, he started a course of (highly modified) ABA therapy. He is now able to use a communication ‘book’ to get across his needs (and like many children, persistently requests candy for breakfast, even though he never gets it!), and now has his first echolalic word – “No!” What fascinated me though, was her comment shortly after the therapy started, that he “didn’t seem to realise before that he could communicate with others”, that this idea was a revelation to him. Also, more recently, she has said she feels his problem with understanding spoken language is due to that “when we speak to [him] he most likely has to translate this to pictures or to whatever way his brain interprets things. On a good day, some of the message might make it through, depending on how familiar he is with those words in that order. On a bad day… none of the message will make it through. It will be a garbled mess.”

Or consider the chapter in the Loud Hands anthology, by Amanda Baggs, where she talks of how the verbal abilities of autistics like herself are “rarely stable… [it’s like] climbing a cliff.. we climb up to able to talk or understand language, and the moment we get distracted we fall back down to where words don’t exist, and have to climb up again, if we can.”[1] She implies that the more ‘rational’ and ‘verbal’ autistics don’t experience this cliff, but I’m not so sure. I think we are very likely to fall down it when we’re exhausted, ill, under severe stress, close to meltdown or shutdown or sensory overload, or already in it. We might also let ourselves slide down it for a while when alone and relaxed, perhaps communing with nature, or simply engaged in our favourite activity, temporarily giving up the struggle to express ourselves in words, and just ‘being autistic’.

I have no idea why some can ‘translate’ or ‘climb the cliff’ well, and others can’t, what difference in our brains dictates this. It’s something that I believe needs far more research – only, as the ‘experts’ seem to be far more focussed on finding cures and/or discovering more ways in which they can ‘prove’ the autistic state is an inferior or pathological one, rather than on things that might actually help us, I’m not holding my breath that it will happen. I do however feel it’s a line of enquiry which might prove helpful for all autistics, but most especially the non-verbal, if someone did find out the reason.

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[1] Baggs, Amanda, pg 233, ‘Untitled’, in Loud Hands: Autistic People Speaking, ed by Julia Bascom/The Autistic Self-Advocacy Network, 2012, The Autistic Press, Washington DC, USA.

Things I Don't Understand - Number Four

The last time I flew in a plane, I went sardine-class. After that experience, I thought first or ‘business’-class had to be much better. Until recently that is, when I read one Aspie’s complaint on Facebook of how first-class passengers so often seem to drench themselves with perfume. My immediate thought was – argh! No first-class for me then! I have always had real problems with strong perfumes. Once, many years ago when I was extremely ill with the CFS, I was visited at home by a woman from the agency supplying household help to me. It was one of my ‘bad’ days, and I was in bed. She stood in the doorway of my bedroom to talk to me, about ten or twelve feet away, yet even from that distance I was overwhelmed by her perfume. It was as if she’d bathed in it. By the time she left (only about 5 or 10 minutes later) I was half-fainting, even though I was already lying down! It was so bad that after she’d gone, my partner ran around opening every door and window, even though it was a chilly day, just to get the smell out.

Perhaps it’s just me, or my generation, but I was taught by my female relatives when young that perfume was to be sparingly applied, at wrists and behind ears, etc, as an alluring hint – not a portable stink-cloud that assaults the noses of anyone within twenty feet of you. (I was also taught to only wear one of each category of jewellery. My grandmother’s generation would not have understood bling!) This thing of smothering yourself in scent seems to be very much a recent phenomenon.

And then there’s the fragrances in things like soap, shower gel, shampoo, etc – why is it necessary for them to be so strongly perfumed? I have real trouble finding toiletries with perfumes/perfume levels I can tolerate, which are also relatively cheap, readily available, and without ingredients I react to. (Not to mention every time I do, they seem to change the brand or formula, but that’s another whole set of complaints.) Some have even been known to make me want to vomit, or give me headaches, and I avoid the really cheap-and-nasty shampoos, etc, for this reason.

There’s also the reek of cleaning products and disinfectants – another aspie also commented on those on Facebook recently, as she’d realised a particular disinfectant was causing her meltdowns at work. Again, why is it necessary to have them stink so strongly? Surely they could formulate products without these horrible stinks that assault the nostrils and sting the back of the throat. It seems to me that these, along with toiletries and fragrances, have all got stronger and smellier too, over the last forty years or so.

So why? What is the reason for the overwhelming amount of perfume, cologne, etc, some people use? I really don’t understand why they insist on liberally slathering themselves with them. Is it some kind of status thingy again? (I never noticed such strong odours in sardine-class.) Perhaps if people are able to afford such expensive scents, they want everyone within twenty feet to know it? (I’d be inclined to say “yeah, yeah, we get the message, you’re loaded, now can you please go and wash off at least half that stink?”)

And why is it so hard to find toiletries etc, without strong scents? Is it just my imagination, that these have been ‘amped up’ in recent decades? I don’t think this is an issue only for aspies either – with that over-perfumed woman above, my partner didn’t have to be asked to open those windows and doors, she found it overwhelming too. And surely there must be others who feel the same.

Once again, I’m left not only reeling from the sensory assaults, but from not understanding something that perhaps ‘everyone else’, or at least every NT, knows without saying.

Why We Need Autistic-Only Groups - Part Two

A while back, I wrote a post on the need for autistic-only groups. The consequent discussion on Facebook (quotes from which are included below) deepened my understanding of what actually happens when members of a ‘dominant’ group join, or try to join, a group originally meant for ‘minority’ people to get together. I became aware, or more aware, of the following things :-

1) When dominants are not allowed in, and they cry ‘discrimination’, it’s because dominants are so used to having the power to go pretty much where they please, and to totally ‘be themselves’ when they get there, that if they are kept out for any reason (or their attitudes are criticised once they do get in) they actually seem to feel hurt. I am a little mystified by this, perhaps because I’ve never been in that position (the only ‘dominant’ group I belong to is the European racial group, and I’ve never felt I had the ‘right’ to join, say, a Maori-only group). But what I am reminded of is reading Paulo Freire (I think) many years ago, who wrote about how members of the dominant groups, when their unequal status and power (hegemony) is declining or gone, will experience the loss of what they think of as ‘normal’ or their ‘rights’, and cry that they are now being discriminated against, and ‘oppressed’. And, what’s more, genuinely believe it, as they don’t see that their previous position in society was based on a distortion of power. I wonder if something of the same kind is happening here.

The problem with those in groups who are dominant, in this case NT people, is that they usually do not realise the various privileges they are experiencing due to being a part of the hegemonic group. So, when we say “well, you've come into our space and it's run under our way of interacting and we don't feel a need to accommodate you” they react with "oh you're being exclusive” when actually what they are experiencing is not being dominant. - Paula

What is interesting is that when we deny them knowledge, THEY feel excluded. They feel they have a right to know us and how we are without acknowledging that they can't. Of course they can try but they will never understand what it is to be us. - Bex.

2) Once NTs are in one of our groups, inevitably at least some of them start ‘correcting’ us. A white person allowed into a group of people of colour, would not nowadays (I hope!) start demanding they talk in Standard English, or tell them not to be so ‘emotional’, or criticise their ‘peculiar’ clothes, etc. Yet NTs allowed into our groups seem to have no hesitation about telling us what we ‘should’ be doing, how we ‘should’ be living our lives, how we ‘shouldn’t’ react in the ways we do, or criticising the way we talk and express ourselves - and get hugely miffed if we challenge that. There is an automatic assumption that their ways are superior. The result is that either we spend a lot of time explaining and justifying ourselves, and/or we start to feel oppressed in the very groups set up to escape that in the larger society.

They were starting to take it over, and question and make judgements about things that we shared, giving ‘advice’ etc that wasn't needed, as well as constantly asking us for 'advice’ (and rarely taking it). – Katy

The trouble at times with our mixed spaces is ...that often they take it for granted that they can begin to use ‘our space’ to ‘learn about us’ without respecting that Aspie spaces are created for us to be able to be ourselves, free from trying to fit into non-spectrum social interacting norms. When us explaining ourselves becomes an expectation in Aspie spaces ... self-consciousness can be created, and this impacts on how we might feel in the space. – Paula

3) An intrinsic part of this ‘correcting’ us, is a lack of understanding of what it really means to be autistic. Our freedom to be ourselves in these groups becomes sharply diminished as a result, previously free discussion dries up, and a muzzled awkwardness ensues. Such groups tend to die or become inactive in the end, because the autistics no longer feel it’s safe to talk openly (this is happening now with the group I mentioned in my first post on this subject).

Our ability to speak is drastically reduced when the message is heard by someone who cannot understand. That is why segregation empowers us. We are all equals here with equal understanding of what it is to have autism. – Bex.

The dynamics of any closed group allowing members to be true to themselves and to each other is so subtly and yet radically changed when others are permitted entry or view. In fact to the very same extent as would inviting one's extended family into a hotel honeymoon suite after the banquet to observe the inaugural conjugal act sans clothes or any bedclothes for that matter either. – John

4) Also, some (not all!) NTs who come into such groups seem to do so mostly to pump us for information or ‘advice’, which can make us feel like performing monkeys, or unpaid consultants, not to mention more than a little irritable. Our privacy is destroyed, ‘our’ space invaded, and we start to feel used.

Aspie spaces (FB pages) are not here for the purpose of parents/carers/professionals to use us to explain AS to them... it's a bit intrusive at times when non-spectrum people come into our spaces expecting that we will happily explain constantly for their benefit... when in fact we're here to discuss among ourselves and hang out with our mates basically. – Paula

The people who think they have a right to my personal thoughts and feelings that I share with you, my soul brothers and sisters, in the knowledge that you truly understand and experience the same things... those people can piss off. - Bex

5) Often in our groups, we have a moan about various problems we’re having with NTs, or poke a bit of fun or ‘turn the tables’ on NTs in humour. Private venting and humour are common ways for minorities to let off steam, and cope with their situation/s without going crazy. But some NTs then complain that we are being ‘anti-NT’ or ‘rubbishing’ them. Yet they don’t ever seem to think about the effects of their own criticism of us, eg when they talk about how ‘difficult’ the autistics in their lives are, the ‘hardship’ and ‘stress’ those autistics cause them, etc.

We've always had non-spectrum people in our groups make accusations of 'not liking' NTs people if we make the odd joke about them or vent about our issues/frustrations in dealing with non-spectrum people... which I feel is inappropriate in a Aspie run space for Aspie people. These spaces are for us.... I get irritated with the reactive behaviour especially when we turn around NT language towards us in humour towards NTs... because we're the ones joking, whereas when non-spectrum run orgs like Autism Speaks create posters and the like saying "we love our kids, but hate Autism”, they are serious. - Paula

Thus, while it may seem like being ‘nice’ or ‘inclusive’ to let NTs into all our groups, the reality is that when we do it means we can end up being silenced, bossed around, used, misinterpreted, criticised, forced to justify our very style of being, and generally oppressed. We get enough of that in the ‘real’ world, we don’t need it in ‘our’ space as well. Yes, there needs to be ‘mixed’ space, meeting grounds where issues can be discussed on equal terms, but ‘minority-only’ groups are even more important. We need autistic-only groups so that we can feel safe, empower ourselves, free our psyches from NT domination, vent if need be, and generally ‘just hang out and be autistic’. We have so little space in the world that’s truly ‘ours’, to have ‘us-only’ groups isn’t really that much to ask.