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.

On Being Comfortable In My Own Skin

Not many people know this, but I’ve kept journals on and off since my teen years. However I’ve recently realised that in all of them, I’ve been simply repeating the same thing in different ways – “I am what I am, this is me, I’m different, I’m different, and I cannot change.” And of course spilling out all the pain and trauma of trying to live in a world that just isn’t meant for people like me, not to mention the self-hatred, depression, shame, imposter syndrome, and sense of being ‘out of place’ that arose in turn out of that.

I tried tackling these issues through various routes over many years. I tried self-esteem and assertiveness training classes, peer support groups, various counsellors and psychologists, communication skills classes, meditation, self-help programs, and of course lots and LOTS of reading, but all to no avail. I still felt like the lowest of the low. My journal was often the only place I felt no-one would judge or condemn me for being ‘different’, the only place I felt I could be my true self.

But I’ve now reached a stage in my life where I have found that privately repeating the same old same old isn’t actually helping anymore, and instead my urge is to take what I know and feel out to the world at large. Journaling has transmuted into sharing with trusted friends in small groups or private chat, comments on various posts, or, most especially, the rough scrawling notes which I later compile into blog posts like this. It’s taken me a long time to get to this point, and there have been several pivotal steps along the way. The main ones have been -

1) Finding the autistic community. If I hadn’t found the autistic community (as opposed to the ‘autism community’), I would have gone on feeling like an error on the human production line, and that what I believed were my defects were something I had to hide for fear of rejection. I would probably have refused to even identify as autistic, because the official criteria for them just wouldn’t have seemed to fit. What, me, that terrible, almost sub-human creature they describe? No way.

But I did find it. And though I’m no longer rosy-spectacled about it, and will readily acknowledge that it’s far from perfect, nonetheless, it’s a damn sight better than nothing at all. Without it, I was lost in a social wilderness, stumbling and crashing my way through the world, feeling like a fool. But in our community I found for the first time people who thought, felt and acted like me, people who didn’t think I was weird or stupid or laughable. In fact some of them seemed to actually like me! Want to know me! This still sparks amazement, but also the warmth that only comes from having true friends for the first time in my life.

Even so, it’s taken over a decade of support and acceptance from my fellow autistics for this to truly sink in. For the damage of earlier years to be undone, and the messages of autistic pride and neurodiversity to seep down into the deepest layers of my subconscious. I think that even after I found the community, on some level I was still ashamed of being autistic, of being ‘different’. But over time, my attitude has been steadily transformed into “this is me, this is who I am, and if you don’t like it, feel free to go find someone whose company you like better!”

I do appreciate that not all of us have the freedom yet to do this, be like this. I hope that someday we all can. And nor am I going to claim that any of this is easy, or that I’ve magically learnt the secret of ‘loving myself’ that so many people have tried to tell me was so important. Rather, I’ve realised that you don’t need to ‘love yourself’ in order to reach a point where you stop and look at all the negativity that comes your way simply for being yourself, and think “you know what? This is rubbish.” I am what I am. We are what we are. We cannot be anything other. So what’s the use of flagellating ourselves for simply being ourselves? Self-loving isn’t necessary. Self-respect is.

And let’s note here that this also extends to all our co-occurring conditions, such as Executive Dysfunction, Sensory Processing Difficulty, sleep irregularities, alexithymia, etc. I used to feel a lot of shame around these, but after years of struggle, I’ve simply accepted that I have problems with things like organising myself and my time/belongings, sleeping regular hours, coping with various sensory inputs, and recognising what I’m feeling. I’ve learnt that it’s okay to be different, to have different needs, and to do whatever’s necessary to accommodate them. And to stand up for myself when people try to tell me otherwise.

2) Exploring new identities around gender and sexual expression. In the last couple of years, I’ve discovered there are actually new ways to describe how I connect to others, how I am in relationships, and how I define my inner self. Realising that I’m non-binary and almost certainly aromantic and demi-sexual has helped me clarify that my feelings around connection are not flaws I should overcome, but simply part of who I am.

And once again, the understanding that I’m not alone, that there are actually labels for all the feelings I had no words for, has helped relieve a lot of stress. I’m finding another community, one that often overlaps with the autistic one, and no, it’s not all about younger generations or being ‘trendy’, as if identities were like fashions. It’s about deep ways of being, and some of us older ones are finding a new peace and self-confidence in realising that we’re just not into romance, or that we need to get to know someone before becoming intimate, and that this intimacy may not include sex, that friendships can be just as powerful and important as sexual/romantic relationships. Being single is not an inferior state, and Romance is not necessarily the pinnacle of human connection.

3) Taking back my personal power. This has been perhaps the biggest step of all, and I couldn’t have done it without the previous ones. My whole life, it seems, I’ve been pushed around, dominated, bullied, manipulated, dumped on, scorned or belittled or outright abused. Over and over again, people have told me what to do, what to say, what not to say or do, how I should live my life, what opinions I should express and how, what I should or shouldn’t eat, what labels I should or shouldn’t put on myself, what I should write about, even how I should dress or walk or stand. And sad to say, I mostly put up with it, either because I was scared, or didn’t know how to stop it, or thought it was normal, or even that I deserved it.

But I’m tired of being pushed around, and I refuse to let anyone do it anymore. I refuse to put up with anyone telling me what to do, whether it’s a bully on a Facebook post trying to excuse other bullies’ behaviour, a martyr mommy telling me that I should shut up because I don’t understand what a ‘burden’ autistic kids are, someone sending me messages simultaneously putting me down and telling me what to do, a health professional telling me to eat foods I loathe or that I ‘don’t need’ vitamin supplements, or an obnoxious person in a public carpark trying to boss me around.

That’s not to say that all my old habits and reactions have completely disappeared. A lifetime of patterns of please-and-placate, submission-and-appeasement, aren’t easy to get rid of. There are frequent ‘knee-jerk’ reactions, but they’re getting weaker, and after a moment my new patterns of thought kick in and cancel the old ones out. I’m getting better and better at this business of standing up for myself, even if this simply means walking away from confrontation, or blocking toxic people. These can be acts of self-respect too. And this change is, I hope, the final shift, the final throwing off of the traces that once kept me bound, the last foundation stone of a life where I don’t have to hate myself, feel ashamed of myself, feel weak and powerless and stupid, and so on.

Anyway, this is where I’m at, right now. So much more comfortable in my own skin, and with the public expressions I have, that I don’t need a private outlet for negative feelings anymore. I can simply be, be myself, with all my faults and idiosyncrasies, but still a person worthy of life, worthy of expressing myself, worthy of a space in the world.

And so are all of you.