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.

Another thing NTs get wrong - About that Eye Contact Thing

I wrote a post recently on ‘What NTs get wrong about autistics and social skills’. In that, I touched briefly on the matter of eye contact. I’d like to go into that issue a bit more.

The assumption often made is that we don’t make eye contact because we, quote, “aren’t interested in other people”. Unquote. This is based on NT behaviour of course – if they don’t like someone and want to ignore or slight them, they simply don’t look at them. But we’re not NT. We have different brains, we respond and react differently, view the world differently, and so our reasons for doing things are almost always different.

So… what are the real reasons for our lack of eye contact? From my own experience, and reading lots of what other autistics have to say, they seem to fall into several categories.

1) It’s Painful. This may be news to the average NT, but yes, that’s exactly what happens. It hurts us to make eye contact, even a glancing eye contact is like having pins stuck in your eyes. Longer contact can feel like a sword run through your vitals. It just HURTS, okay?

2) It’s Invasive. This is, I think, part of why Number 1. It feels like the other person is looking right into your soul, and can see all your thoughts and feelings. We do seem to have fewer emotional defences than NTs, and I’m wondering if there is some link between that and this feeling of being invaded.

3) It’s Irrelevant. Well, to many of us it is. Because we can’t ‘read’ (or learn to do so only later in life, and then imperfectly) the little ‘tells’ of body language, eye language, facial expressions, that let us know what someone is feeling or thinking, we simply don’t get that NTs consider eye contact important. Hence we just don’t bother with it – especially if N^os 1 and 2 happen to us if we do.

4) We Really Don’t Want To Engage Today. As we get older, we learn that making even fleeting eye contact means people think you’re willing to engage with them. And so, if we just don’t have the spoons, are close to meltdown, are too scared and/or don’t know how to interact with them, and a whole host of similar reasons, we just don’t. It doesn’t mean we dislike people in general, it just means RIGHT NOW, we can’t handle interaction.

5) We Really Do Dislike People. Sadly, because of the prolonged and horrible way they’ve been treated, some autistics do actually become totally turned off the rest of the human race. Despite how often we are victims of horrendous treatment, true misanthropists are actually rare, and the ones I’ve known tend to have at least a few (a partner, children, one faithful friend), who are exempt from that dislike. But I suppose there might be some who have no-one at all, and shun all contact. There are NTs like this too of course, and I emphasise that it’s connected to the treatment we’ve received, and NOT an intrinsic part of being autistic.

6) We’re Trying To Listen. Everyone has only so many units of ‘sensory attention’, let’s say 100. NTs can somehow ‘turn down’ surrounding sensory input, so they only need maybe 20 or 30 units for it, and can use the other 70 or 80 to both listen and look at someone. We can’t. We can’t block it all out, so it takes up maybe 95 or 99 of those units, and hence we have almost none left to pay attention to someone speaking. So we have to choose – look, or listen? We can’t do both. Add to that our lack of the ‘correct’ listening expressions, and it’s not hard to see why people think we’re “not paying attention”.

There may be other reasons we don’t make eye contact, but these are the ones I know of, the ones that seem to be most common.

So I ask any NT reading this to please not make judgements about us, when we don’t meet your eye. You don’t know what might be going on for that autistic, on any given day, and unless you know us really, really well, you probably don’t know what we might feel if you tried to force eye contact. Let us interact in the way we need to, not how you think we “should”.

And my fellow autistics – know that it’s okay not to make eye contact. Don’t let anyone force you into what you’re not comfortable with, or just don’t have the spoons for. You have the right to be yourself, and interact how you want to. You have the right to say ‘no’, in whatever form you choose.

What Is Bullying - And What Isn't

Lately, I’ve been seeing a lot of accusations of bullying thrown about in our Facebook groups, or on people’s personal pages, and I find it troubling. And no, I am not going to name names, as they are not my stories to tell. Suffice to say, I’ve noticed that often, the ones crying loudest and longest about being ‘bullied’ are the ones actually doing it, while their supposed ‘bullies’ can do little but grit their teeth and suffer in silence.
It also seems to me that many of us, lacking in social skills and intuition as we are, have difficulty defining exactly what is happening when someone has a negative reaction to something they’ve said, so tend to call any behaviour they don’t like ‘bullying’. So I thought I’d get it clear just what is bullying, and what isn’t.

The following are not pleasant, certainly, but they are NOT bullying.

Arguing with you. We are a quarrelsome lot, with many different outlooks on life. So people will disagree with your opinion, often forcefully. Which is okay, as long as it’s done respectfully. If you really don’t want to argue, you can always simply say “let’s agree to disagree.”

Challenging your perceived racism/sexism/homophobia/etc. Being told that you’re displaying one of the ‘isms’ is never nice. But sometimes it’s necessary, at least in the other person’s eyes. Even if you don’t feel that you are prejudiced, your being willing to at least look at what you’ve said is usually all that they want.

Challenging your thinking processes. We often pride ourselves on being logical, and hate seeing others thinking illogically. So you’ll occasionally get challenged on this. In itself, it doesn’t mean they hate you or anything, or are putting you down. Once again, respect is the key.

The other person losing their temper. None of us are saints. A lot of us are emotionally volatile. And yes, sometimes somebody will lose their cool and end up saying things they know they shouldn’t. And yes, it can be hurtful. But if this isn’t their usual behaviour, then maybe it’s time to step back and let things cool down.

Teasing and joking. This can actually be done affectionately. Unfortunately, not every autie will recognise when it’s being done. But as long as it’s not done maliciously, then it’s still not bullying.

So what IS bullying?

We’re all familiar with the physical “schoolyard bully”, but online is a different matter. There are many different ways bullying can be perpetuated via social media, but I’ve focussed here on the ones I’ve personally seen happening.

Harassment. People can be harassed online much as they are in real life, through repeated insults, scorn, putdowns, contempt, or even ‘gaslighting’. Harassers can also slavishly follow someone around from group to group, so that their victim never feels safe.

Slander. Some seem to take delight in spreading malicious rumours and false allegations about others they dislike, in order to damage their reputations. Even if the person being slandered is blocked, they usually hear about the rumours anyway.

“Hate so-and-so” groups. These are an outgrowth of the slander method, where a bunch of people who have decided they dislike someone, start a group designed solely to attack that person, rounding up others to join them in their viciousness. By this time, no matter how little truth there is in the allegations, they’ve taken on a life of their own. Unfortunately, many who don’t know the person concerned just accept what they’re told, and fail to do their own research.

Dumping/blocking. Another method of the haters. They actively campaign to have the hated one discredited in and/or dumped from as many groups as possible, even ones they’re admins of. Often accompanied by blocking, this leaves their victim without any means of responding, or counteracting the vileness being spread about them.

Trolling. A troll is traditionally someone who comes into a group or chat room, etc, and baits the members with inflammatory statements. But by repeatedly doing so, trolls can also bully those groups and their members, to the point where they no longer feel safe there.

Videos. Youtube is a great thing. You can make a video about anything you want. Trouble is, no veracity, no double-checking of your story, is required. The result can be a very spiteful and hurtful smear of others, with little chance for them to set the record straight, or counteract the harmful impressions given.

Intimidation. If none of the other techniques satisfy them, the bully might step up their efforts, including threatening to get their victim ejected from offline organisations, or even of tracking them down in real life (“I can trace your URL”).

There are lots of websites on how to cope and deal with bullies, so I’m not going to discuss that here. What I’m concerned with is two things – firstly, that often if the victim tries to respond in kind, they can end up being seen as the ‘bully’, as the original bully or bullies’ campaigns have been largely in the shadows, or misinterpreted by others.

My second and even bigger concern is how so many of us don’t recognise these people as bullies, or allow them too much latitude, simply because they’re autistic (“They just made a few mistakes, they didn’t really mean it”, etc). We can be extremely naïve in this regard, and tend to take others’ words at face value, not recognising what’s happening, or the awful toll it takes on their victims.

I hate to admit it, but not every aspie/autie is a beautiful person. We have our ‘bad eggs’ like any other group. Make no mistake, these people are extraordinarily manipulative and dangerous creatures. Please, if you notice anything like this happening, do not give the bullies any of your support.