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.

Disability, Spoons and Cats

Recently I realised that my elderly cat has gone completely blind. She’s probably been getting that way for some time, but for ages I mistook it for other things. When she meowed to be let in, then hesitated in the doorway, I would get impatient, thinking it was the usual cat-thing of “Oh! The door is open! Hmmm, do I want to go in or not…” Being a typical cat, in other words. But then I noticed she was blundering into furniture, and one day she fell off the deck. I’ve never seen such an expression of feline terror in my life. (She wasn’t hurt, just scared.)

Since, then, I’ve been watching her negotiating her environment, learning to feel her way to where she wants to go. It’s as if she’s saying to herself “okay, couch, couch, chair, couch, my food should be straight ahead, oops wall, okay fridge, the food should be here somewhere…” Her bowls are just a couple of feet further, but she will still deviate off course, blunder into the cupboards or stove or even the laundry, walking right past the food, and turn around a few times before finding it. Finding her way out is equally roundabout and laborious. (Yes, I do sometimes take pity on her, and take or guide her to her food, but it’s not always obvious what she wants, and I think she has to learn her own ways to where she wants to go, as I cannot be with her every minute.)

But in watching her, it’s struck me all over again just how labour-intensive it is, having a disability. Sometimes, she just gives up, and settles down for a nap, wherever she happens to be, in a corner or doorway or right in the middle of the floor. I know how that feels, when your spoons are all used up for now, and you just need to quit trying, and rest. She sleeps a lot, and so do I.

All of which reminds me of how exhausting life was when I broke my ankle and then my hand, and was in a wheelchair for several weeks. Even the smallest thing, like getting up from the couch, or fetching something from another room, took a lot of time and energy. I am fortunate, yes, as I can walk again now, but the ankle will probably never be what it was, and still gives me problems. Add in arthritis in my knees, Chronic Fatigue Syndrome and being autistic, and the simplest things can still consume a lot of my spoons. 

Take something like a simple walk round to my local shops – something most do without thinking twice about it. For me, it starts with estimating whether or not I have the energy to walk, and how sore is my ankle already, or should I drive. I’m photo-sensitive, so I have to make sure I have my cap and sunglasses. I literally watch every step I take, as any misstep will cause (added) pain. As there’s no footpath on my side of the street I have to be extra careful of some patches of rough, uneven ground. And I sometimes think – if it’s this difficult for me, how much more so is it for those permanently in a wheelchair? When I was in one, I found the most trivial things were an obstacle or a trial – kerbs that didn’t look that high, or those pretty-looking cobblestones in our town’s main street, which actually rattle the bones something dreadful.

And when I do get to, say, the supermarket, there are more challenges. Maybe it’s more crowded than I thought it would be, or I have to hold my breath walking past the seafood counter, as it’s particularly pungent today. Or I need something from up high – the strength and balance of my ankle is not what it used to be, and I have a very real fear of falling. Or they don’t have an item I need – inducing oh-God-what-do-I-do anxiety, even panic or near-meltdown. I have to negotiate all of these, all the while my ankle is hurting, my knees not wanting to take the pressure of pushing a trolley or carrying a basket, and I’m starting to wonder if I’ll have the energy to walk/drag myself home.

My life is full of daily negotiations like these. When I walk down my front steps, the ankle, knees and still-tight calf muscles and tendons mean I need to hang onto the railing. (Steps without railings now make me shudder.) Going up them is not much better. Arthritis doesn’t only cause pain, it makes the joints weaker, and so I must use extra energy to push myself up each step. My days of bounding up flights of stairs are gone. Even getting in and especially out of my car can be tricky, I have to manoeuvre so that both feet swivel through the door at the same time, pulling my bag or bags with me, all the while trying to prevent my elbow from accidentally beeping the horn! Getting in and out of bed is also a matter of calculating movements. Going anywhere is a matter of looking at what it will take, what I might face there, and so on.

Other disabled can no doubt supply their own lists of such daily negotiations, the things that consume their spoons. I have of course always been autistic, and sadly when I was younger I didn’t know why I struggled with so many things others found easy. I thought I was somehow inferior, a lesser breed of human being. 

There are many non-disabled who still think this of anyone with a disability, they think that it’s a fate worse than death. Literally. When I was younger, I leapt up steps and blithely walked for miles. When my cat was younger, she would saunter in and go straight to her food or the couch. When you’re not disabled, you don’t give such things a second thought. And so people don’t really see how often we have to, how we not only start out with fewer spoons, but use more of them in everything we do.

But having to do this, to make these constant little, or not-so-little, calculations and negotiations, doesn’t mean we’re lesser beings, or to be pitied, or scorned, or shunted aside and ignored. We’re not ‘better off dead’. We’re human beings, even with our extra trials and tribulations. We need accommodations and support, yes, but most of all we need understanding and patience from others. I have this to say to them - if we say we can’t do something, take our word for it. If we say we need to leave, don’t scoff at us. If we struggle with something, don’t say ‘It’s not that hard’. Accept our truth – because who knows, you might live it someday too, or someone close to you might.

I'm Tired of People Defining Me

I’m tired of people trying to define me. My whole life, people have been telling me who and what I am, how I should act or react, and how I should live my life.

It started very young. When I complained about bright lights or strong smells or loud noises, they told me “it’s not that bad”, and I should “stop being such a whinger”. When I was a teenager, I was told I “shouldn’t be so anti-social”, and I should “just make friends”, as though this was easy. If I tried to say I couldn’t do something, I was told that “of course” I could do it, and that I was just being “unco-operative”.

If I wore certain clothes that I felt comfortable in, I was either ridiculed or pressured into wearing more “fashionable” clothes. I was told that my behaviour was “rude” and “un-ladylike”, and that I must be “nicer” to people, especially men. Later, after I became a feminist and came out, a different bunch of women let me know I was expected to be a “right-on-sister” instead - a different set of expectations, but no let-up.

My differences were cast as personal flaws or deficiencies, and I was told that I just needed to “try harder”. They would tell me to “just relax” and “be myself”, but when I did, they said “not like THAT!” If I expressed my real feelings or thoughts, people told me I was weird, or that “nobody” felt like that, and that I needed to “shape up my ideas” or “get real”. Or they would tell me I “must” feel such-and-such, or have this or that neurosis, because of my behaviour or attitudes. I was told I should “speak up more”, or that I was talking too much and should let others have a turn. I was “too quiet” or “too loud”, “unfriendly” or “clingy” or “nosy”, and on and on. No-one, it seemed, was quite content with me, no matter what I did.

My (now-ex!) partner would oh-so-confidently explain to me what I “really” felt. Or that what I felt “wasn’t normal”, that it was symptomatic of all that was wrong with me, and that if only I listened to her and did what she told me to do, and became what she told me to be, all would be well. She told me exactly what sort of person I was, and what my faults were, in great detail. According to her, I was a terrible lover, a lousy friend, a bad mother and, she implied, deficient even as a human being.

When I became ill, some thought I was “just being lazy”, or a “piker”. Even when I finally got diagnosed with Chronic Fatigue Syndrome, it didn’t stop. There was the alternative healer who told someone else that it was a “pity” I’d been diagnosed, implying I’d use it as an “excuse” to “wallow” in my illness. And the counsellor who asked one day why didn’t I “just go for a run round the block?” This same counsellor also once spent almost an entire session ripping into me for being on a benefit. It became obvious she had a low opinion of beneficiaries, and me for being one.

Even those who accepted the diagnosis and meant well, would tell me I needed to “just take this seawater solution”, or do this or that pet therapy of theirs, or some other “miracle” cure, or “just think positively”. Or that the vitamins I was taking were “just expensive pee”, always without asking me what worked for me.

And then I discovered Asperger's and autism, and oh look, another lot of definitions. The ‘experts’ solemnly pronounced me incapable of empathy, of having emotions, of understanding others or even myself, of being able to relate to others or be a good parent, etc, etc, etc. It seemed that, once again, I was a deficient creature, barely even a human being, in the eyes of others who had never even met me.

Being autistic and physically disabled aren’t the only things about me which others have used to try and define me of course. Religions have tried to reduce my innate sexuality to a mere “lifestyle choice”, and tell me that I’m a “sinner”, and even claim, as one NZ religious leader has, that gays cause earthquakes (no, I’m not kidding).

Men have tried to ‘mansplain’ things to me, told me I “should smile more”, or suggested I “don’t understand” how the world works. Able-bodied people have tried to ‘able-splain’, in the same patronising fashion, without bothering to find out first what I actually already know or don’t know. Or they’ve treated me as if I was mentally deficient, again without bothering to find out anything about me.

Sometimes even other autistics don’t understand me, their image of me seems to be incomplete, or even totally wrong, like the one who told me I was a “man-hater”, when I challenged his sexism. It never seems to end.

But my feeling now is – NO.

NO.

Enough.

I’ve had enough of this. I refuse to allow my life, my very self, to be defined by anyone else, ever again. I am what I am, and that’s good enough for me. And it’s just going to have to be good enough for the world too.

Everyone has their bottom line, the point beyond which they won’t and can’t go, and this is mine.

I don’t mean I’m going to go around wildly starting arguments or pushing anything on anyone. I do mean I will stand my ground, and no longer allow others to define me, to tell me what I am or should be or how I should live my life. I will back off, but I won’t back down.

This is me. The real me, as defined by me. Get used to it.

My Favourite Things

Too often lately, I’ve been feeling kind of negative, so just for fun I decided to make a list of my favourite things. These are all things that help me get through life. A lot of them, I’ve realised, are sensory things, but not all. Anyway, here they are, vaguely grouped but not in any order of favouritism.

The smell of new-mown grass. Even when it threatens to aggravate my hayfever.

The smell of hot pavement after rain, and watching steam coming up off it.

The smell of onions or bacon frying. Or sausages, especially on the barbecue – and the taste of those sausages (gluten free, of course!) in my mouth. Nom, nom!

Lite Licks Dairy Free icecream, with my own (gluten free) sticky date pudding or self-saucing chocolate pud.

Cadbury’s Chocolate, especially Dairy Milk and Caramello, and Whittaker’s Peanut Slabs. Yes, I know, they’re dairy, but they’re still yummy…

Gluten-free hamburgers from Burger Fuel. I so wish they’d open a store in my town.

Roast chicken with roast potatoes, gravy and all the trimmings. Nom, nom again. (Licking my lips here!) (I guess it’s pretty obvious I’m no vegetarian, lol…)

Spectacular sunsets, with all the delicate shades of colour that surround them, and the deep, deep blue of the twilight sky. Actually, the sky on just about any day that’s not rainy and grey. So many people never really look at the sky, if they truly saw it, they’d marvel.

Gazing at the stars and moon, especially out away from town lights, or pictures of space, galaxies, stars, etc – it’s a feeling I can only describe as soul-liberating or expanding.

Our beautiful NZ beaches, especially when they’re empty of people, and especially when pohutukawa trees are in blossom, their brilliant red and green combining with the blue sky, golden sand, white surf and azure sea, to make a treat for the eye. The surge and crash of that surf makes my skin tingle, and I feel so alive.

Standing on a hill or mountaintop, and being able to see for miles and miles, especially if the view is out to sea, and breathing in the clean, clear air.

Trains – ever since I was a little kid, I’ve loved the chugga-chugga-chugga of them, it produces a thrilling resonation, deep in my body. I love to ride trains too, the way they rattle and sway along, and how you get to see all sorts of back yards and people’s lives not visible from the street. There’s something slightly mysterious about trains, even the most ordinary suburban commuter ones.

Stationery stores – they make me want to grab those pristine tubes of paint and slather them across the pure white canvasses, or the pencils and crayons and pastels onto the sketchbooks, or write in those oh-so-pretty notebooks… especially if I haven’t done anything creative for a while.

Spending time with my daughter, especially when we joke and laugh so hard we just about wet our pants.

Good times with my family, especially dinners, where there’s lot of yummy food, and we laugh and joke ditto as above…

Joking and laughing with my aspie friends so hard that yes, sometimes I ROFLOL and just about PMSL…

Watching my favourite movies yet again. Basically any of the following –

- The Sound of Music. Yes, I know it’s impossibly schmaltzy, but I love it anyway.

- Fiddler on the Roof, the movie version.

- All the Lord of the Rings movies, but especially the last one. “Don’t you give up Mr Frodo!”

- All the Star Wars movies, even the ones with such wooden acting you’d think the stars were fenceposts.

Playing my favourite music when I’m alone, turning it up loud, and just letting the sound wash over me, till all my tension is gone. Especially I love -

- ‘Time To Say Goodbye’, it really tugs at my heartstrings (we played it at my mother’s funeral), but oh it’s good.

- ‘I Believe in You (Le Crois En Toi)’ by Il Divo and Celine Dion.

- ‘O Holy Night’, by Il Divo.

- Sole Mio singing just about anything.

- ‘Amazing Grace’, by just about anyone, but especially if it has bagpipes. (I love pretty much anything on bagpipes actually, must be something in the blood - all those Celtic ancestors! - they always send a thrill down my spine.)

Monet’s waterlily and haystack paintings. The first time I saw them in an exhibition, I was blown away. Also too many of the Impressionists and ‘Old Masters’ to name here. They make my fingers itch to paint too, though I know I will never get anywhere near their class.

Old houses and buildings, castles and cathedrals and the like, especially if they have soaring arches and lots of ancient masonry. There’s just something about arches…

The thrill I get when I’m doing family history research, and stumble on something – a name, a birth record, a census entry – that is another leap back in time, another ancestor emerging from the mists of the past (family history research is astonishingly addictive).

Doing crosswords and other word puzzles – and the satisfaction I get from finding that last crossword answer that’s been bugging me.

Curling up on the couch with a good book, a tasty snack and a long cool drink. My favourite books are whatever I’m currently reading, something to do with my special interests, or anything (fiction or non-fiction) about those who are marginalised, outcasts, loners and/or ‘different’.

Anyway, this is my list of ‘stuff I like’, just off the top of my head. It’s longer than I thought it would be, which I’ve realised is a good thing. The more things that nourish me, and that help me get through life and endure a world that I find illogical at best and downright crazy at worst, the better.

Do you have a similar list? What makes you feel good? What do you do, to help yourself cope with life and the world? What are your compensations or treats, that make things more bearable?