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.

Not Sharing Our Feelings

A few months back, I accidentally jammed my fingers in a sliding door at home. As I bent over in pain, I suddenly realised that I did not want anyone there, to ‘comfort’ me. By this I mean that when I am physically hurting, my skin becomes acutely painful, I can’t bear to be touched or ‘fussed over’, or have someone put an arm round me, etc, it only magnifies my pain. But it’s also other people’s emotional reactions I find difficult – the “oh, what’s wrong, how can I help, tell me where it hurts,” sort of thing. I know they mean well, I know it’s ‘empathy’, it’s just that when I am in pain, maybe crying, I don’t have words, and don’t want to find them. Even attempting to do so actually takes me away from the pain, I move from ‘right-brain-reaction’ to ‘left-brain-explaining’, and thus the connection to my own emotional reactions to pain (or to anything), established only with difficulty in the first place and often faulty, is lost, and those emotions go deep into some inaccessible place, perhaps never to be retrieved. (Plus, I then often come across as very ‘rational’ and ‘detached’ in describing the pain, which leads some to believe I’m not hurting at all.)

But since that injury, I’ve also come to recognise that something similar goes on with many of my emotional pains. By this I mean my deepest feelings, or my ‘intense’ or ‘over-the-top’ emotional reactions, often (though not always) the stuff that can lead to meltdowns or shutdowns if I’m not careful, and which I’ve only just learnt not to be ashamed of. Over the last few years, I have been able to share a great deal of my thoughts and feelings with other autistics that I’d previously kept buried, out of that shame. But still there’s a lot of other feelings and emotions I don’t share. It’s as if I have this deep reserve of ‘stuff’ I’ve always kept pretty much private, and which I probably always will keep mostly private. And I suspect, from reading between the lines, that many other autistics have a similar cache of deep feelings they don’t share either, or not much, sometimes not even with their closest autistic friends or their partners (or perhaps only them).

So I started thinking about why that’s so, what stops us from sharing. And it seems to me that there are four main factors.

(1) Alexithymia – the difficulty we have with recognising, dealing with and expressing those emotions. We don’t know what we feel, or we can’t find the words for what we feel, or we find them far too late.

(2) The bad reaction we get when we do express them. You know what I mean – the puzzled frown, the blank ‘what-planet-do-you-come-from’ stare, the getting told “You’re so weird” or “You can’t possibly feel that, no-one feels that way, it’s not normal, what is wrong with you?”, the laughter or snide comments, the sneer as they turn away and proceed to ignore you, perhaps even using what you’ve said against you at some later point… If we get this every time we try to share our deepest selves, it’s not going to encourage us to try.

(3) The afore-mentioned shame, often as a result of (2). We become ashamed of our ways of reacting to the world, of how we see things and handle things, of our emotions, and of our very selves. I’ve written on this autistic shame before, suffice to say here that it encourages us to conceal our deeper emotions and feelings.

(4) But beyond all that, I feel there is a deeper reason why we don’t share, one not talked about much even amongst autistics, which is simply that sharing emotional stuff doesn’t come naturally to us. Think about it. We are the toddlers who, when we spot something interesting, don’t go “Wooka dat, Mumma! Ooh!” We’re the children who aren’t out in the middle of the playground yelling “Look at me, everybody! I can stand on my head!” Instead, we are drifting around the edges of that playground, barely noticing the other kids. We’re the teenagers becoming more aware of others but also finding them and their emotional demands confusing, and barely beginning to understand what ‘having a friend’ entails. We’re the adults who often find counselling or psychotherapy unhelpful, and I don’t think it’s only because the therapists often aren’t knowledgeable about autism, or that we just haven’t found the ‘right’ methods. We can learn to connect with our emotions, yes, and learn to talk about them, but it doesn’t seem to really come naturally to us. We have to work on it.

I feel this could be another area where we differ from NTs, and where we are perhaps doing ourselves a disservice in attempting to be like them. For NTs, ‘sharing’ their deeper selves and ‘connecting’ with others is essential for their emotional health, and it doesn’t occur to them that we might not find it so essential. In fact the reverse may be true - it’s been my experience that many times, I don’t feel better for having talked about my emotions, or revealed them to others. Sometimes that’s because their reactions are negative. But also it was because it just didn’t make me feel any better. It just didn’t (and often still doesn’t) ‘feel right’ to talk about such deeply personal stuff.

Yes, sometimes, it can be helpful to talk about our emotions with others, especially if they are on the spectrum too. Often through that we come to realise something isn’t really such a big deal after all, or not something to be ashamed of, or fretted and worried over for hours or days or even weeks like a dog with a bone, as we so often do. And so there’s this release, this catharsis, that can and frequently does happen, especially when we first ‘come out’ as autistic, and find the autistic community, and feel accepted by them. But I sense there is also a deep reserve within many, perhaps even most, autistics, even the ones that seem most ‘outgoing’ and ‘sociable’, that means we have a lot of stuff we keep to ourselves.

And to me, this seems perfectly okay. In many circumstances – eg when confronted with those who can’t or won’t understand us – it’s actually a damn good idea to ‘keep stum’. But even when that isn’t the case, we still have the right to choose, and if it doesn’t ‘feel right’ to reveal certain ‘stuff’, then I don’t see why we should. How much of our ‘stuff’ we do share, and when, etc, is naturally going to differ from one individual to another, and one situation to another. All I am saying is that if we keep certain things to ourselves, it’s not a Terrible Thing, and we’re not Terrible People for doing it. (Or not doing it, as the case may be. Maybe I’m wrong, and there are tons of autistics out there who happily Reveal All?)

My point is - go with what feels right for you. We have the right to do whatever ensures we feel emotionally secure, without apology or feeling ashamed of it, or of ourselves.

Autism Positivity Flash Blog post

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

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

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

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

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

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

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

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

Autism Matters - Education on Autism, By an Autistic

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

Things I Don't Understand - Number Three

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

….DUH.

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

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

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

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

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

I truly, truly, don’t get them.

Why We Need Autistic-only Groups

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

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

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

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

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

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