MY AUTISTIC REACTION TO THE PANDEMIC

You’d have to be living in a cave in some remote spot not to know that we’re in the midst of a worldwide pandemic. There’s really no other news on TV, or my Facebook newsfeed for that matter – except the deliberate light relief kind, like cat videos or music from European balconies.

I’ve felt a wide range of emotions in response to this. A ton of sad ones - compassion for those who are or have been sick, grief for those who have died, and empathy for those who have lost loved ones. Empathy also for those who know that they or their loved ones are at risk, those who are struggling to cope, those whose anxiety is going through the roof, those who find the whole thing just too overwhelming. I’ve sometimes found myself sitting on the couch crying, for instance when my country experienced its first Covid#19 death. I didn’t know the person, or anyone who’s died anywhere, but I cried anyway.

And anger. I’m furious at the hoarders and panic buyers who’ve emptied the supermarket shelves, depriving those of us who can’t afford to do this of things we need. Seriously? Who needs three hundred toilet rolls anyway? I’m especially angry though at the profiteers. How dare you. How dare you make money on the backs of people’s pain, misery and deaths. What kind of amoral pipsqueak are you? And then there are the callous and the don’t-care-I’m-all-right-Jack crowd, who put everyone else at risk. This is not a time for partying, people!

I’m also angry at those so-called leaders who haven’t acted fast enough, and have put more people’s lives at risk as a result. My (admittedly rough) impression is that ‘left-wing’ governments, at least in Western countries, seem to be acting faster and doing more to help ordinary people, whereas right-wing leaders have tried to delay acting, or even reverse some actions too soon, in order to minimise damage to the Holy Grail of ‘The Economy’. The inadequate measures of some governments sometimes seem akin to telling the Titanic’s orchestra to play on as the boat is sinking. I’ve wanted to grab them all by their collars and shake some sense into them.

But my strongest feeling is simply fear. It’s not myself I fear for, but relatives and friends, especially those who are in the ‘high risk’ category. Will they get sick? Will anyone I know die? I fear for my loved ones, especially a close relative who is pregnant with a much-wanted and longed-for baby, as well as my more elderly relatives. Plus no-one knows how long this pandemic will last, will it be over in a few months, or by Christmas? Will we acquire herd immunity, or will the virus mutate again? Will there be further pandemics? When will there be a vaccine? How much should I be scared?

Because nobody knows what the future will hold, even if we beat this thing. Maybe the world will only change in small ways – elbow bumping replacing high-fives, or a shift to more people working at home. Everyone becoming more scrupulous about washing hands. (I can’t help wondering what you were all doing before?!?) Or maybe we’ll become a more scared world, like we did after 9/11, with ‘viral’ becoming a personal insult and cause for social rejection. One big possibility is that we’ll become more callous about allowing the vulnerable – the elderly, disabled, chronically ill and homeless – to be sacrificed in order to ‘manage’ future crises. And many of us autistic and disabled know that we will be among the culled. These are just some of the possibilities.

Alternatively, we could have some kind of social revolution, a shaking up of the world’s complacency. This crisis has made the defects of neo-liberalist capitalism patently obvious. The modern practise of ‘just-in-time’ supply-chains, for instance, with few or no reserves, doesn’t work in a crisis. The profit-at-all-costs mentality and ‘lean, mean’ health services have left many at risk. The crisis has also shown that the real ‘essential people’ of any society aren’t billionaires or politicians, but people like supermarket workers, truck drivers, and medical personnel. Perhaps people will look at our socio-economic system differently after this.

Now, I get that lots of people are having similar reactions and thoughts right now. We’re watching a horror unfolding before our very eyes. ‘Unprecedented’ is a media pop word right now – we’re all in uncharted territory. Feeling sad, angry, frightened and/or overwhelmed is an entirely appropriate set of responses to a pandemic. ‘Quiet terror’, as one commentator called it. There are so many unknowns it’s frightening. Even the scientists and doctors still don’t seem to know that much about how this virus works, and they and governments all around the world are playing catch-up, with fatal consequences. It’s already being said that mental health is going to take a big hit from this.

But I do wonder if it’s going to be even harder for us autistics, not so much because of social isolation (this will vary from one autistic to another), but because of all the uncertainty. My own feeling is that we’re less resilient emotionally, and may take it harder, and come back slower, if at all. I know that a large chunk of my own sense of security has been removed, and I don’t think it will ever return. I already have a very low level of trust in the world, due to my experiences, now I have a new mistrust of Mother Nature as well.

A big part of our trauma is surely going to be how so many of the ‘normal’ things in our lives are either gone or in abeyance. I didn’t realise till now how many of the world’s activities I simply took for granted, even if I didn’t like them much. Something as ordinary as going to the supermarket has become like taking a ticket in a lottery – I never know if what I need will be there or not. What will I go without this week? How will I cope? And of course as for many autistics, fear can lead to catastrophising, where I imagine the worst, and then double and triple it.

My own country moved pretty quickly, more than a week ago, into a complete lockdown, and while I was processing it all, I pretty much fell apart. I’ve done a lot of compulsive watching of TV news, eating junk food, irregular sleep, and much more stimming, while my dreams have been full of earthquakes, violent car accidents and wandering lost in strange places in the dark. It’s been an effort to get myself even a little bit together, to make healthy meals, get to bed earlier - and to do some of my much-neglected housework! I’ve had to cut down my hours of watching TV news, and stayed off Facebook until I felt able to cope with the onslaught.

Because I have a deeper level of fear, which I find hard to describe, but which seems to be a sense of the world fracturing right in front of my eyes. I’ve been floundering, grappling with this sensation of everything falling apart. I guess that’s what an international emergency does to you. An old W B Yeats poem keeps coming to mind, about how ‘the centre cannot hold’, and ‘anarchy is loosed upon the world’. (Yes, I know I’ve probably been reading too much dystopian sci-fi!) As a new order/reality takes shape, and I work out the new rules for it, I hope this fear might ease.

And for all we know, it won’t be like any of this. Maybe there’ll eventually be a vaccine, or life-saving treatments, and life will just go back to what it was. Or something like it. Maybe. Right now, I’m just trying to ride the wave, and take one day at a time. Nobody knows what’s going to happen next. And that’s the hardest thing for any autistic.

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.

Something I hope will be helpful for teachers (and parents) of autistic kids

A GUIDE FOR TEACHERS OF AUTISTIC STUDENTS

I wrote this guide a while back, for an autistic group, it's recently occurred to me that many others might find it helpful. Feel free to print it out and/or share it online (with acknowledgements and/or a link to here please!) wherever you think it might be useful.

1) Don’t expect us to be Neurotypical, or ‘normal’. Autism is fixed at the genetic and neurological level, we can no more change it than we can fly. Pressure to be ‘normal’, even if superficially successful, only causes us stress.

2) Presume intelligence. Difficulties with social interaction, verbalisation, auditory processing, information processing and sensory overloads can sometimes lead others to think we are ‘stupid’. We aren’t.

3) Consider our sensory needs. Most of us have very acute senses, meaning things like fluorescent lights, glare, strong smells, and noisy classrooms can cause us huge stress, hindering learning and possibly even leading to meltdowns. Even small accommodations, such as allowing us to wear caps and sunglasses inside, can help.

4) Don’t force eye contact. In autistics, lack of eye contact is not a sign of dishonesty. Many of us simply find eye contact painful, invasive or simply irrelevant. Also some find it difficult to look at someone and listen to them at the same time.

5) Accept that our body language and emotions are different. Many of our emotions don’t seem to ‘reach the surface’ very well, and when they do, are not likely to be the ones considered appropriate or correct, or correctly expressed. This doesn’t mean we don’t have any feelings, simply that we have different ones.

6) Accept that we don’t mean to be rude. We lack any instinctive understanding of social rules, and so inadvertently trespass them. If we are disruptive, it’s best to quietly take us aside, and tell us the rules explicitly. It’s also good to tell us when we do something right, so we can add it to our social ‘repertoire’.

7) Keep change and disruption to schedules to a minimum. We don’t cope well with sudden changes and lots of disruptions. Give us as much advance notice as possible of changes, including transitions from one lesson activity to another.

8) Isolate our meltdowns. Meltdowns are NOT tantrums, but a sign that we are stressed to the point of overload. It’s best to get us as fast as possible to a quiet, isolated, dimly-lit space – and leave us there till we calm down. DO NOT TALK to us during or just after the meltdown, it will just make things worse.

9) Avoid slang, or explain it. We are very literal thinkers, and if we don’t know expressions, can be confused by them. If you tell us to ‘hop to it’, we probably will! This is sometimes assumed to be ‘cheeky’ behaviour. It isn’t.

10) Focus on our strengths, not our weaknesses. We may be lacking in social skills, but are often very good at other things (and no, it’s not always computers!). Our ‘special interests’ can often be used to aid and focus learning. Moreover, a positive attitude on the behalf of the teacher can reduce the chances of us being bullied.

by Penni Winter