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.

BECAUSE I CARE

I know I’ve said that I’d rather not write again about dealing with people with borderline personality disorder. But it seems that I still have some things I need to explain. I’m getting kind of tired of hearing that we mustn’t point out bad behaviour on the part of people with personality disorders, particularly Cluster B ones, because, y’know, it’s ‘demonising’ and ‘stigmatising’ and ‘ableist’ and all.

But it’s not stigmatising to stand up for victims of abuse. It’s not demonising to call out an individual or even a group on their negative behaviour patterns. It’s not ableist to point out that people with personality disorders are a high risk group for both abusing and being abused, precisely because of their disorder.* The very characteristics which cause them to either get a diagnosis, or for others to suspect they rate one, unfortunately predispose them to it. **

Because you don’t have to be a rocket scientist to figure out that people who have unstable emotions, a fear of abandonment and poor boundaries (borderline), or massive but frail egos (narcissist), or aggressive tendencies and lack of empathy (anti-social), are going to have problems relating to others. Even the desperate need for attention of those with histrionic, the lesser-known Cluster B disorder, could lay them open to abuse. I’ve also, sadly, seen many with personality disorders be abusive to some, but then get trampled on by others in turn.

But here’s the thing – people with personality disorders are entitled to support – but minimising and excusing bad behaviour is not the right sort of support. It’s no use complaining about being ‘stigmatised’, when it’s your very own behaviour that has created that stigma. People have become wary, and weary, of being victims of manipulation, abuse, angry tirades and distorted world-views. To try to ‘remove the stigma’ without addressing the ROOT CAUSES of it is to simply attempt to silence the victims of that behaviour.

Not to mention that I find it ironic when I get accused of ‘demonising’ by, for instance, someone with a personality disorder trying to bully another person into submission. Or I receive a message from another telling me how they’ve ‘changed so much’ – right in the middle of the kind of truth-twisting rant that proves, um, no, actually they haven’t. This kind of curious double-speak, or just self-dishonesty, leaves me unsure whether to laugh at the irony or just shake my head in weary disbelief.

The other accusation that’s come my way recently is that I’m uncaring and ‘lacking in empathy’ for those who have suffered the trauma/abuse/etc that created these disorders.

So let me make something clear – I very much do care.

I care about the whole world and its pain. I care about those who are abused or raped or tortured, about people dying in horrible wars, about First Nation peoples being deprived of their lands or culture or rights, about how so much of the world’s wealth is being hogged by greedy billionaires, about sexism and racism and classism and ageism and homophobia and transphobia and Islamophobia and anti-Semitism and every other prejudice and ‘ism’ you can name. I’m utterly opposed to oppression and hate of any kind, and want the world to be a much better place.

I know I can’t really heal the entire world, but if I could, I would. I’d put balm on all the wounded spirits, help the faltering, house the homeless, embrace the refugees, pick up those who have fallen… and I’d heal the environment too. I care because that’s who and what I am. Call it a ‘saviour complex’ if you like, or a ‘bleeding heart’, but this is me. It’s my nature to care. I don’t want anyone to feel pain or fear or loss, to suffer abuse or maltreatment of any kind, whether they’re on the spectrum or not, whether they have a personality disorder or not, or whatever else their life entails.

So yes, I care. I may choose not to associate with those of you with personality disorders because of my own past history, but I do care about the trauma you’ve suffered. No-one should have to go through that. No child should be abused, manipulated, neglected, and have their psyches twisted and damaged. It was seeing your pain, in part, that kept me in a relationship for nearly ten years, and more long months in a toxic ‘friendship’. But ultimately, it was the results of that which also drove me away. Because there is only so much an individual can take.

And I know you better than you think. (From this point on, I’m going to talk only about borderliners, because that’s the condition I’m most familiar with. But those who’ve been closely associated with other personality disorders can perhaps tell a similar story.)

I’ve seen your pain, and how it drives you to lash out. I’ve seen your terror of abandonment that makes you push away the very people you want to hang on to. I’ve seen your bone-deep anger that conceals an even deeper misery. I know that buried somewhere inside you, is a small child who knew something wasn’t right, but who got all kinds of messages that told you otherwise, till you were overwhelmed and lost your sense of self and safety. I’ve seen how you flounder around, trying desperately to compensate for not having a solid psychological base. I’ve seen the abyss within you, even when you were/are too afraid to face it yourself.

And most importantly, I’ve seen that on a very deep level, you’re not happy. It’s not called a ‘disorder’ simply because mental health professionals like to slap labels on you. You are ‘dis-ordered’, your true self compromised when you were so young that you don’t even realise how damaged you are, how dysfunctional your connections to others are, how twisted your basic assumptions about the world/life/other people are. You don’t seem to get just how much your style of personal interaction is neither normal or desirable. Not to mention that you are a high risk group for suicide, or, more likely, simply dying old and bitter and alone.

And that’s the true sadness of your condition, not the so-called ‘stigma’.

But here’s the cruncher – having a personality disorder is not something you simply have to accept. It’s not something to hang an identity on, but a problem that needs to be addressed. It’s not set in stone - though it can be stubborn - and you CAN heal from it. And I want that for you. I want you to be healed. I want you to burrow down into that deep well of long-held sorrow, to root out the pain and trauma, to lance the long-festering wounds in your psyche, to experience psychological ‘disinfecting’ and healing. I wish this for you.

But, rather like an alcoholic, you must first admit there’s a problem, before you can work on it. I assure you that I’m not minimising the difficulties of this path. It will be long and hard, and depending on your location and resources, therapy might be out of your reach. This doesn’t mean that you can’t work on challenging and changing yourself. Taking responsibility for your words and actions, and the results of them on others, is an essential start. Not assuming that those who dare to challenge you are prejudiced, demonising, ableist, don’t understand you or your condition, etc, etc, is also essential. Consider that others might understand you all too well, but that you’re not listening to what they’re trying to tell you. Understand also that just because your BEHAVIOUR is bad, doesn’t mean that we think YOU are bad. You’re simply damaged – but the damage can be healed.

You don’t – you really, really don’t - have to live life at the mercy of your tempestuous emotions, your fear and anger and compulsions. You CAN have a calmer, more stable and fulfilling life and relationships. It IS possible. But you won’t get it by sitting back and complaining about ‘stigma’, without doing the work. Nor will you get it by gathering in PD groups to commiserate about how ‘misunderstood’ you are. I want you to challenge yourself, and others with PDs, to begin the long road to a better life. Because I believe you can do it.

And I want you to be healed.

I want you to be healed. I don’t think I can emphasise this enough.

I want you to be healed. For your sake, and for the sake of those around you.

I want us all to be healed.

I want a better world. For all of us. For everyone.

BECAUSE I CARE.

Never doubt it.

___________________________

*Re ‘disorders’ - it’s true that autism itself has long been considered a ‘disorder’, but we now know it’s not. And something genetic and inborn in us, that’s ultimately simply a different kind of brain, is obviously nothing like emotional damage acquired through traumatic experiences.

**I’m aware that many autistics are misdiagnosed with different personality disorders, probably in all the Clusters. Reading some of the Cluster A descriptions, for instance, is like reading a textbook list of autistic traits. And I know also that those who do have a personality disorder may also may have a second one, or other mental health issues, eg depression, anxiety, PTSD, etc, which can of course complicate things.

Autistics And Self-Loathing

 Something that’s not really talked about much, apart from the occasional rant, is the self-loathing many autistics feel. I’ve experienced episodes of it myself, and have sometimes seen it in others. We can be tripped up by it, cast into shame, self-hatred and low self-esteem, no matter how much we might believe in autistic pride and all the rest of it. And of course, those who haven’t been exposed to that, are likely even more prone to it.

I want to examine the likely sources of this self-loathing. They seem to me to fall into three categories.

1) The world’s view of us. 

The public picture of autism is an ugly one. The ugliness is there in almost every news item about autism, where announcers talk about our very existence with solemn frowns, discuss worriedly how our numbers are increasing, and then smile perkily when talking about a ‘possible cure’, or gush over yet another piece of inspiration porn.

It’s in how the most frequently projected image is that of young, non-oral-speaking and almost feral boys, who spend their time having constant meltdowns. And who will never progress beyond that, it is implied or even stated outright, without a ton of ‘therapy’. 

It’s also in the next most common image of us, as Asperger’s type teenage boys with fantastic computer skills but zero social skills, with no empathy or emotions, and who border on psychopaths – think of those news items claiming this or that mass shooter was Asperger’s.

It’s in the frequent news items about possible causes of autism, each one seeming more wild and ludicrous than the previous. Not to mention the even more wild and ludicrous potential ‘cures’ for it. As though we are so terrible, anything at all must be considered to ‘fix’ us. Even things that would be considered abusive done to anyone else.

It’s in the almost always negative language used about us. Words like disease, epidemic, brain damaged, disorder, puzzle, problem, burden, cure, treatment, therapy - the list goes on and on – and in all the solemn pronouncements of ‘experts’ and pundits on What To Do About Us. 

The underlying message we hear? “The world hates us, and wants to be rid of us.”

2) People’s treatment of us.

The way people treat us on an individual basis is often ugly too. As children, we can be dragged from one doctor to another, one ‘expert’ to another, put through all sorts of tests, and subject to all sorts of ‘therapies’ and ‘treatments’, designed to make us at least pass for normal, whether we have a formal diagnosis or not. 

Or schools single us out for various behaviour ‘corrections’, or demeaning segregation from others, or we get bullied by other students, and left unprotected or even picked on by teachers. We flounder without help, or get the wrong sort of help that actually makes things worse.

As adults, we suffer frequent criticism, hostility, derision, ridicule, ostracism and rejection. We are bullied at work, in the street or even in our own homes. We’re put down, insulted, pushed around, laughed at, or even beaten up. Our supposed loved ones or even paid caregivers can manipulate us, exploit us, and sometimes abuse us also. This abuse can be physical, sexual, verbal and emotional.

Even in what seem like ‘good’ relationships, we can be subject to a severe lack of understanding, emotional expectations we fail to reach because we don’t even know they exist, silent demands we can’t figure out let alone fulfil, and criticism of our ‘bad’ behaviour.

The underlying message we hear? “They hate me for being autistic/weird/different”.

3) Our own experiences

There are two parts to this. 

       a) The first is when we make a mess of things in front of other people. If you’re autistic, you know what I’m talking about here. The all-too-public meltdowns, or the embarrassing shutdowns at totally the wrong moments. The times we literally fall flat on our faces or break something important. The times we turn up late, or disorganised, or in a total fluster. The times we inadvertently hurt someone we actually care about. The times we get worked up about something, and are told we’re ‘over-reacting’, or ‘making a fuss about nothing’, and ‘need to get a grip’ on ourselves. The social blunders and the awful silence that follows them, the blurts and the clamming up, the muddles and the messes, the times we just end up feeling like a total idiot.

       b) The second part is more private, but perhaps even more potent. It’s the times we come home from struggling through a day at work or school, keeping up face till we get home and can basically crawl into our holes to recover, till we have to get up and do the same thing all over again. The times we get invited to some social event, and know that we just can’t do it, and the resulting feelings of inadequacy. The seeing anyone else do anything we’d love to be able to do, but just can’t. 

It’s the crying all night, or rocking till the wee small hours. The mess our homes get into, even if no-one else sees them, and the realising that we don’t have the slightest idea how to clean them up. Or the moments we realise we’ve stayed up till three a.m. AGAIN, and we have to go to work or school tomorrow. Or our sleeping in, and then being embarrassed because someone might come to the door while we’re still in our pyjamas at midday. Even if no-one does.

Then there’s the moments of overwhelming empathy, where we want to cry for the whole world and the mess it’s in, and then feel stupid for ‘feeling so much’. Or how stupid we feel when we realise the significance of something said to us maybe years ago, or how we were fooled by someone or something way back when. It’s also the times we go off on our own mental ‘trip’ of one kind or another, getting all worked up, only to hear or see something that makes us realise we’ve got it all wrong, and makes us feel like fools. Even if no-one knows we did.

Or the self-flagellation and feelings of shame about even feeling shame, because we’re supposed to be able to ‘pull ourselves together’ – a sort of double whammy. 

The underlying message we give ourselves? “I’m so stupid/weak/useless/pathetic/not good enough.” Or something similar.

All of these can become sticks to beat ourselves with. And no matter how much we believe in autistic rights, autistic pride, and taking an ‘autism-positive’ stance, this self-loathing can still creep up on us and whack us from behind, when we least expect it.

Now, I don’t have any magic cure for any of this. But I do know that, far from being a reason to stop advocating for change, it actually makes that change even more imperative. We need to change the public perception of autism, change the way autistics are treated, and create an atmosphere of support and understanding for ALL autistics - whatever their age, whatever their so-called ‘functioning’, whatever their needs, ambitions, etc. 

Because only then, do we have a chance at being freed from this, and attaining a permanent state of self-respect.

(Note: updated 15/10/2017, to include the last two sentences in the paragraph that begins "Then there’s the moments of overwhelming empathy...")