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.