Things I Don't Understand - Normal

I don’t understand ‘normal’.

I’m thinking of two types of ‘normal’ here, though they blur at the edges.

The first is who or what is largely still assumed to be the social norm, the ‘standard’ for others to live up to, emulate, or to be measured against. And that norm is the white, Western, middle-to-upper class, cis-heterosexual, able bodied, neurologically typical male or, as one commentator calls it, ‘Default Man’.

And yet is this really the ‘average’ person? Just looking at statistics says no. Most of the world’s population is non-white, for starters. Even if you only look at, say, Europe, in most of its countries, more than half the people are female. Even looking at just the men, setting aside those who are gay/bi/trans/gender neutral/etc, those who are not white, not middle or upper class, those who are not of the majority religions, and those who are not able-bodied and neurotypical… I’m betting that what’s left is actually only a very small proportion. (Ten percent, according to the writer of ‘Default Man’.)

So how did this minority become held up as the ‘standard’? The answer to that lies with history. Men have been dominant for millennia. Add in all those colonisers, slave-owners and plunderers of non-European countries who didn’t think non-whites were even truly human, centuries of religious and social condemnation of non-cis-heterosexuals, a power imbalance in favour of the rich, screwed-up attitudes to the disabled coupled with lack of understanding of science… And you have the perfect storm for a narrow slice of the population to be able to hold themselves up as the benchmark group for everyone else to envy, compare themselves to, and wish to belong to – or to made to feel as though they should wish to.

We can’t change history of course. But some of these attitudes are still with us. Witness the bias towards male experience in the diagnosis of autistics, for example, that sees many females not diagnosed because they don’t fit the stereotype. Or how black kids are not allowed to wear their hair in ‘black’ styles in some schools. Or how people react to Muslim women’s head-coverings. Then there’s the pressure to not be ‘obviously’ gay, or to speak ‘standard’ English, or for immigrants to speak English instead of their own language even amongst themselves, or the recent attempt of a certain Australian politician to have a motion passed that it’s ‘okay to be white’ (apparently, if it wasn’t passed, whites would be the ‘victims’ of ‘genocide’, yes, you can roll your eyes now).… You can probably think of more examples, but you get the picture.

So I understand the historical reasons for the current situation, what I don’t understand is this clinging to the old standard, when it’s so obviously not actually ‘standard’, or even ‘average’. I can only assume it’s fear – fear of ‘the other’, fear of change, fear of somehow losing white privilege (which too many of them view as their ‘rights’). They’ve been thinking of themselves as the ‘norm’ for so long, they’ve come to feel they really are it. Or the best thing to be, or however they justify it to themselves. And you can almost watch the scrambles going on in their minds, as they try to do so. The mental blocks and torturous reasonings they have to manoeuvre around, the gaping holes in their arguments and world views that they refuse to look at.

I can tell you that as a person of European ancestry, I don’t feel fearful of ‘white genocide’ any time soon. I am more concerned with the actual genocides and wars and oppressions already going on, the plight of autistics everywhere, of gays in some countries, of immigrants fleeing terrible situations, the effects of climate change, etc, etc, etc. Not to mention all my own day to day difficulties of course. You know, real problems.

So I don’t understand this insistence on a group who never have been the majority, being able to keep their power, their wealth, their privilege, at the expense of those who actually are the majority. I guess what I’m saying is, I don’t understand reactionary people.

The second ‘normal’ I don’t understand, is a category of people I don’t even have a name for. They’re the ones who simply …do things. Like, they get out of bed in the morning, go off to work or school or wherever, come home, eat, relax, and then go to bed and fall asleep. Straight away. And then wake up and do the same over again the next day. Without thinking twice about any of it.

And on their weekends or days off, again, they simply get up and do things like mow lawns, catch up on housework or schoolwork, tinker with their hobbies or take themselves and their loved ones out to places like movies, shows, amusement parks, the beach, and so on. During their holiday breaks, they crowd to places where lots of others go, and don’t seem to mind that at all, or even like it.

And if you ask them, how do you just do these things, they look at you like you’re crazy, or simply say ‘I never thought about it.’ And shrug. And go on doing it.

I get that people do this, I just don’t understand how.

How they do it without stress. Or at least not the kind of overwhelming stress that us ‘not-normal’ people suffer. They never worry about things like sensory challenges, social challenges, transition challenges, executive functioning issues, mental/emotional states and triggers, stairs, wheelchair access, exhaustion, blood sugar levels, allergic reactions, pain issues, will-there-be-food-I-can-eat issues, whether-X-activity-will-make-me-dizzy issues, and all the thousand-and-one other things that those of us with ‘conditions’ stress about. Not to mention those of us who have the anxiety of possible exclusion or even threats to personal safety because of race, class, sexuality, gender identity, religion or lack thereof, etc.

These ‘normal’ people just …do things. Without a second thought. No agonising, no scattered thoughts, no intense pre-planning, no I-did-this-yesterday-so-I-have-no-spoons-to-do-anything-today, no double and triple-checking everything, no fretting over whether you’ll get a park close enough or will the accessible parking be all taken or will some dipstick give us hassles because we have an invisible disability and park in a disability space, no worrying about potential meltdowns or shutdowns, no ‘at what point does it get too much and we bail out’, no ANYTHING.

I used to read accounts of these people’s lives, only half-consciously looking for any sign of this, but it just wasn’t there. And then it finally hit me - that they don’t worry about these things because they don’t have to. So I understand that now. But I’ve been struggling with so much for so long, that I have no conception, no understanding at all, of what a life without that struggle would feel like.

But what I do understand, is that, if all of us ‘not-normal’ folks got together, we may find that, like the non-‘Default Man’ people, we’re actually the majority – and that it’s actually normal to be ‘not-normal’.

Things I Don't Understand - Number Eleven - Change

I don’t understand change.

Don’t get me wrong here. Change as a means of improvement, I’m fine with. Without it, we wouldn’t have things like safer cars, improved rights for minorities, better health care, and the Internet. And yes, it does bring undesirable things too, but I can understand the roots of those, even if I don’t like them much.

I can also understand change as variety, something to spice up life, because every day being the same can be totally, mind-numbingly, boring. I can cope with this kind of change, as long as it doesn’t happen too much, too often, and I can go back to my ‘normal’ afterwards.

But change simply for change’s sake, that’s the one I don’t understand.

Take for instance when supermarkets switch items round in their aisles, so that what was once in Aisle Seven, is now who knows where, because for sure you don’t. Or when manufacturers change the packaging of their products, so you can’t even recognise them. Or worst of all, they actually stop making your favourite of some product, for no reason at all that you can figure out.

Then there are things like the fashion industry, which constantly changes its ‘look’, so that even if you do find a style that fits and you look not-too-bad in, next year it’ll be gone, and something uncomfortable and unflattering will take its place. Not to mention that they use crappy fabrics, and charge outrageous prices, and that some of their designs would make you a laughing stock if you actually wore them in the street. And don’t get me even started on POCKETS. We’re conned into thinking this absurdity is good, people make movies, TV programs and even write books about it, it’s become normalised, and largely unquestioned.

A lot of it seems to be about money – if this product isn’t making them a squillion of profits, they toss it and make something else. Never mind if lots of people are quite happy with the existing one. Or supermarkets, department stores, etc, will rearrange their floors because they want to put more ‘high-value’ (ie, more profitable) stuff where people will see it and impulse buy. And fashion, of course, is definitely about money, especially at women’s expense, as we’re the ones being the most badly conned (or forced, for lack of alternatives) into buying their products.  The ethos seems to be ‘make people buy more, make more money, make more money, make more money...’ We’re all in thrall to the Great God Profit.

Politicians seem fond of this kind of change too. Maybe they just like to be seen to be ‘doing something’, even if it’s endless tinkering what should be left alone. We in New Zealand have seen a fair bit of this over the past few decades, especially in regards to things like our health and education systems. Politicians wanted to ‘leave their stamp’ on the country, and they have, not always to good effect.

My feeling is always, why can’t people leave well enough alone? If something ain’t broke, don’t fix it, is my philosophy. This constant change-for-change’s-sake seems to be very much a modern thing, a function of late-stage capitalism perhaps. We now have ‘planned obsolescence’ rather than quality, ‘trends’ rather than a search for perfection, ‘the latest gadget’ rather than the best tool for the job. Change has stopped being about improvement or variety, and become an end in itself, an out-of-control spiral, meant only to further enrich those who have way too much already. This is a big part of what makes the world seem to get crazier every year.

Political analysis aside, I’m sure many NTs feel bugged by much of the above too. But the autistic reaction to this sort of change goes beyond irritation. It can mean very real distress. The world to us is a chaotic place, and we rely on a lot of little things to provide anchors or islands of calm in the swirling mess. If the tinned tomatoes aren’t in Aisle Seven, if our favourite shampoo is discontinued, if we can’t find clothes we like, it feels like the bottom has dropped out of our world. Our anchors are gone, and we’re drifting out to sea in a storm. Our little islands have disappeared, and we’re free-falling into the abyss.

When this happens, our thinking can spiral into what I call catastrophising, where one little thing triggers a chain of thoughts that invariably end in a disaster scenario. No tinned tomatoes – we can’t eat tonight, we’ll go hungry, we’ll starve, be found dead on our kitchen floor. No shampoo – we’ll have to use something that induces sensory overload and meltdowns, or we’ll never be able to wash our hair again, will end up dirty and smelly, lose our jobs, become homeless... No new clothes – we’ll end up dressed in rags or butt-naked, unable to set foot outside our front door, our lives falling apart… You get the picture. Sometimes, we’re able to find a solution, or others help us find one, but we go through the emotional wringer on the way to it.

I’m not saying that the world has to be organised around us. I am saying that other people need to understand that if we get upset about some ‘little thing’ having changed, we’re not ‘making a fuss about nothing’. It’s very real, and very horrible. This world is hard enough for autistics. Please, don’t make it worse.

So yeah, I don’t understand change for change’s sake. And I think I’m not alone.

That Executive Dysfunction Thing

Lately, I’ve noticed quite a few posts about executive dysfunction disorder in autistics. It’s caused me to think about my own. It’s not something I normally talk about much, and I think it’s the same for others on the spectrum, because why would you want to talk about something that makes you feel a failure?

But now it’s coming out of hiding, and I think this is good. The more we air our difficulties, the more we can accept it as part of our autistic nature, and learn to work with it rather than bash ourselves up for it. We can stop feeling like there’s something ‘wrong’ with us because we ‘can’t get our lives together’. It’s both a practical thing and a self-esteem thing, in other words.

For me, it was an issue long before I had any idea that I am autistic, or that there was a name for my disorganised state. Though my house is (usually) tidy, it being really clean is, shall we say, a less frequent occurrence. Dishes pile up, floors get grubby, the toilet needs cleaning, dust balls threaten to mutate into a different lifeform. Then I will have a sort of mad dash around, cleaning and scrubbing and washing and vacuuming, ending up exhausted, but feeling pretty virtuous!

In the past, however, these cleaning jags often meant I’d start cleaning one thing, say the bathroom sink, then I’d notice the mirror was dirty too, and start on that, and then think ‘Jeez, I should really do the bathroom cupboard’, and empty it out, but before I finished that, I’d see that the wall above was dirty… And then I’d go to fetch something for cleaning it, and notice that the wastepaper bins needed emptying, and while I was doing that, I’d see something else which needed doing, but in the middle of doing that, I’d wander by the bathroom and remember I hadn’t finished that either… before I knew it, hours would have gone by, and I’d have half a dozen incomplete tasks, stuff lying around everywhere, and be too drained to finish any of them.

I’d also often forget appointments, uni lectures, etc, or have a mad scramble to get to them on time. I would frequently arrive late, all sweaty and anxious, feeling like a fool, and never quite recovering my poise. Then I’d go home and crumble into tears, vowing to ‘do better next time’, without having the slightest idea how. I often felt like I was stumbling from one disaster to another, like a firefighter battling summer drought fires - as soon as you put one out, another starts.

And now? Over the years, I’ve learnt a lot about self-management. Appointments go on my calendar, hanging in a prominent place. I have a daily ‘to-do’ list whiteboard, another on the fridge for the shopping list, and I could really do with a third for the ‘weekly to-do’ list. I also have a whiteboard by my desk, for writing and other creative tasks. I have some fairly rigid routines around evening tidying-up, so that I don’t wake up to a mess. I use my cellphone or my bedside clock as an alarm, and a kitchen timer. I work hard on staying on track.

And yet. I sometimes still arrive at things late. I don’t necessarily get around to finishing my ‘to-do’ lists. Things get shoved to the next week’s list, and the next, and the next. I forget to use my various devices. And so on. Not to mention that I have CFS as well, and other health issues, that make cleaning even more difficult than it used to be.

And one thing I’ve never managed to do much about is erratic sleep patterns. Just last week, talking to the dietician (I’m pre-diabetic), she was talking about the importance of ‘getting back’ to regular sleep habits, so that my meals get regular too. I was too embarrassed to admit that I don’t really have regular sleep patterns to get ‘back’ to! I might be up till two am one night, sleep in till ten am, then crash early the next night. I force myself into ‘proper’ bedtimes when I have to, but I never seem to be able to keep to them for long.

On a daily basis, keeping myself ‘on task’ means, even now, with all the ‘box of tricks’ I’ve garnered, a constant jarring wrench of my attention back to that task, over and over. And, I must emphasise here, I don’t fit the criteria for ADHD/ADD. At all. It’s just that, well, I see things, or I think about things, the state of the nation, the state of the world, the future, or ooh look at the pretty butterfly, or the lovely pattern of the leaf shadows outside, or God that wall is grubby, and should I clean it now, or, or, or… and then I have to remind myself - hey! You’ve got a job to finish here! Pay attention! Repeatedly.

It’s rather like you’re trying to go for a walk, only you have a ‘gammy’ leg which means you keep staggering off the path. But a friend keeps dragging you back on. Except the friend is also you. Imagine how difficult your progress would be, or how little you’d make. That’s what it feels like.

But I’m not sharing all this for sympathy, or hints, or anything like that. No, the point of this post isn’t really any of that. It’s about my amazement at people who don’t have EF issues. I’ve been watching them my whole life, and I still don’t know how they do it.

You know the sort of person I mean. The flatmate whose room is always tidy, or the workmate who effortlessly completes their daily assignments. The neighbour doing garden work at ten am Sunday, chatting to a mate or his wife at the same time, then going out for the afternoon. The relative who goes shopping without even a list, and yet never seems to forget anything important. They just… do things. One task, after another. After another. All day. Every day. Without any seeming effort or trouble keeping themselves on task. With no jarring or dragging. Huh.

Sometimes I’ve seen such people complain about getting ‘distracted’ or feeling ‘scattered’, but as far as I can tell, it’s NOTHING like what we experience. (I’m sure that there must be some NTs who have serious EF issues. I just don’t know any.) (I’m sure there must be autistics who don’t have EF problems either.)

How DO they do it? How does it feel to be like that? I have no idea. I look at them and know I can never be like them, live like them, and it adds to my already strong sense of alienation from the vast bulk of humanity. As if I needed anything to increase that.

And given my age, and how long I’ve been working on this, I don’t think it will ever be any different. The only thing I can do is to continue to work on self-management, and on self-acceptance. Not to mention throwing off the judgements of others.

Because the judgements we place on ourselves are hard enough to shake off. We really don’t need more of that, from people who just don’t understand, as it only makes our lives even harder, and doesn’t solve ANY of our problems.