The Central Dilemma of Being Autistic

 There’s a phrase that’s been echoing in my head a lot recently - you can only be what you are.

 This may seem so obvious as to be not worth saying, but it’s a privilege that most autistics aren’t allowed, or don’t dare allow themselves. Our authentically autistic selves are considered Not Acceptable to most of the world. We are all too often not permitted to be what we really are.

 Autism is defined as ‘abnormal’, and a synonym of abnormal is ‘unnatural’. And that’s how autistics are seen. NTs hold themselves as THE model of how to be, so in their eyes we’re a deviation from nature, a distortion of what a human being ‘should’ be, and hence we must be ‘corrected’, no matter the cost. It’s a kind of subconscious arrogance, manifesting as ableism. It involves a wholesale ignorance or refusal to acknowledge that the way we are is totally natural FOR US, both as individuals and collectively.

 Our idiosyncrasies and caprices, our strict orderliness or total lack of it, our raging sensitivity, our contrary minds, our brutal honesty or social obliviousness, our ways of talking or moving or connecting, our free-wheeling stims and our sudden spurts of joy, our abrupt hungers and our intense griefs, our deep diving into things like maths or cars or lampposts or history or outer space or music or brain chemistry… All the things that make us gloriously, outrageously, flamboyantly, achingly and overwhelmingly autistic, have been cast negatively, and seen as things to be eradicated, even when some of those things are also evident in non-autistics, and even when they’re harming no-one.

 The unspoken rule is, if an autistic does it, it’s wrong, simply BECAUSE they are autistic. The very state of BEING autistic is judged wrong. Is it any wonder that so often we can’t accept ourselves, when this is how our intrinsic state of being is framed? We’ve become conditioned, in one way or another, to feel inferior or just plain ‘wrong’ - regardless of whether or not we even know we are autistic. We’re taught to despise our true selves anyway, or at least to become determined to hide them, to avoid the inevitable repercussions.

 This often leads to the phenomenon known to autistics as ‘masking’, which is nothing to do with Covid, but rather the various ways in which many of us try to conceal our autistic behaviours and thought patterns, to present ourselves as ‘normal’. We might be pressured to do this by others, or we might do it to ourselves, in order to fit in, keep a job, etc, or just to avoid hassles or abuse. The cruel irony is that over time it can develop into such a polished performance, that even if we do come out, people won’t believe we are autistic, and sometimes we don’t know how to stop doing it, or who we are or might be without the masking.

 There are also autistics who can’t mask, or who can’t do it very well, or simply refuse to, and they can pay a huge price for that - which tends to make those of us who can try even harder, to avoid that fate. But even if we’re able to mask successfully, that also comes at a huge cost. Addiction, depression, anxiety, burnout, PTSD, self-harm, other mental illnesses, and the consequences of those, are rampant in the autistic community, and our average lifespan is only in our thirties.

 Thus the central dilemma of all autistic lives is, how much can we be real? And if we can’t or don’t mask, or the mask slips, how much and in what ways will we be punished for it?

 This dilemma presents itself in innumerable ways, small and large, on a daily basis. Punishments can be anything from a blank look or being ignored to physical attacks, abuse or even murder. We know that we run huge risks just by existing as autistic. Small wonder then, that some of us become surly, defensive, prickly and ‘unco-operative’, while others mask just to survive. Please note in no way is it my intention here to judge anyone’s choice on this - as a friend of mine said recently, “Masking is not wrong. What is wrong is that we have to do it.” And I’d say the same about being ‘un-cooperative’, or whatever other behaviour choices individual autistics make in order to get through each day with any shred of self-respect or sanity intact.

 So how can we be authentically autistic, in such a world? How can we get people to accept us as we are? The short answer is that they won’t – unless we DEMAND that they do so. And in my experience, the best path to building the inner strength to be able to do that, as individuals and as a group, lies in finding our anger.

 Anger is empowering. Anger is cleansing. Anger is also freeing. Anger allows us, after years of taking crap, to say “you know what? I don’t want to do this anymore”, or “this situation stinks”. It’s the little voice that starts saying “what right do non-autistics have to tell me how I should be anyway?” It tells us that we deserve better, that we have a RIGHT to be treated better. A whole heap better than what we’re currently getting.

 And yes, I know that for many if not most autistics, expressing that anger can be very risky. So much so, that some of us daren’t allow ourselves to even feel it, maybe thinking that we don’t have a right to it. While other autistics feel so much rage and bitterness, that it explodes ‘inappropriately’, and they’ve paid the price for that. Some of us alternate between these two states, to our detriment both ways. There isn’t a perfect remedy for this, but I have found that the most productive solution is to channel the rage into freeing our authentic autistic selves. So much of our rage (and our suppression of it) is because we haven’t been allowed to, or haven’t dared to let ourselves, be real. We have to demand acceptance, for all our sakes.

I recognise that I’m in a privileged position - I’m old, don’t have a job, etc, and personal safety aside, don’t much care anymore what anyone thinks of me. Thus I have little to lose. And I know that many others have way, way more at risk if they take off the mask, or allow themselves to get angry. And I’m not dismissing the very real risks of doing so, especially with the way things are right now around the world. Believe me, I do not.

 But at some point, in some way, we have to start being true to our real selves to at least some degree, or we’ll die inside. Or just die.

Because whichever way we go, there’s a price to pay. People often sense something ‘off’ about us anyway, no matter how well we mask, no matter how hard we work to divert their attention from our ‘faults’, to squeak through another day, and another, and another, and another…. How long before they realise we’re not THAT normal, and the punishments start? And even if we do manage to slide by, how long can we keep up the façade? How long before it all just becomes too much, and we break down? Burnout alone can be a huge price to pay.

 Now, I’m not saying that we all need to become hotshot activists/advocates, shouting to the world. That’s not a route everyone can or wants to take. There needs to be a recognition that everyone’s path to unmasking will be different. The process of unravelling the mask can be as slow, complex and experimental as building it was in the first place. And connecting to your anger can be just as difficult and just as prone to trial and error.

 It might be that you start with something small but quietly revolutionary, like allowing yourself to stim when you’re alone (for years, I didn’t even let myself do this), or to quietly, privately, dive into a special interest you’ve denied yourself. Or you could allow yourself to wear clothes or hairstyles others consider weird. You could create a blog, or YouTube videos, or paintings, or music, or whatever, which expresses something of your true self. Or perhaps you’ll leave a job that’s not right for you, or simply begin to be more honest with those around you, even if they do start looking at you funny, or, well, just about anything that allows you at least a little ‘wriggle room’ to BE you. To be authentically, wonderfully and uniquely autistic, to whatever degree you can manage - and you’ll probably find that degree widening over time.

 Because you can only be what you are – despite the world’s, or your own, strenuous effort to make you otherwise, and no matter how much you might hate yourself, and wish to be something else. I did all of those for most of my life, until I finally realised the futility of it. Why fight your true nature? Why not accept it, and work with it instead? You don’t have to love or even like everything or anything about yourself, I’ve discovered, in order to accept yourself. (You might ask, how can I accept negative things like meltdowns? You can accept the part of you that is sensitive, and work with it, not against it. This applies to all of your autistic traits, for that matter.)

Repeat after me – YOU ARE FINE JUST AS YOU ARE. THERE’S NOTHING WRONG WITH BEING AUTISTIC. And anyone who tries to tell you so, is wrong, wrong, and wrong. Find your rage. And channel it into being your true self. Because you cannot ever be anything other than what you are. And it’s time to stop pretending to be anything else.

What It Feels Like To Be Emotionally Abused

I don’t normally watch the TV ‘soapies’, but a storyline on one of them caught my eye recently. It’s about an older woman who’s been emotionally and verbally abused by her husband to the point where she breaks and lashes out at him with a wine bottle. At the point of writing this, she’s in jail, awaiting trial for attempted murder – and viewing herself as a ‘bad’ person who deserves punishment. The other characters on the soapie have mostly turned against her, as even before the wine bottle incident, he had quite expertly cast himself as the ‘victim’, and her as various bad things. Even the police don’t pick up on the clues.

As a survivor of emotional abuse myself, I find it too painful to watch, though of course I’m hoping the truth will eventually emerge. But I don’t have much hope of it, as it can be really hard for anyone who hasn’t been through this to understand what it’s like. While my situation never got as far as wine bottles, it nonetheless nearly destroyed me. So I want to explain something of what it feels like to be the recipient of emotional and verbal abuse.

The first thing that needs to be understood is that it’s essentially a betrayal. I’m not talking about sexual betrayal here, but a betrayal of the very trust that should exist between partners. When you enter into a relationship, there’s a basic assumption that they will deal with you fairly and honestly, that they truly care for you and that anything they tell you is the truth. So when they start telling you that you’re this or that Bad Thing, that you’re no good at this or that, you believe them. They must be telling you this For Your Own Good, right? Or at least that’s what they tell you, and they love you, so it must be true, right? Overwhelmed by this flood of new ‘information’ about yourself, you lose all sense of who you were before in the struggle to correct your ‘faults’, to become what they’re telling you that you ‘should’ be.

It's especially easy for them if you already have low self-esteem and are inclined to believe the worst about yourself. (Abusers hone in on such vulnerable people, of course.) Add in being autistic (as in my case), even if you don’t know it at the time, but do know that you have trouble ‘reading between the lines’ and making good judgements about yourself and others, and you’re primed to believe that they are seeing something you can’t, even if it doesn’t ‘feel right’. Under a relentless barrage of criticism, you cave. They must be right, you must be bad, bad, bad. Having been reduced to a state of helpless abasement, you don’t find much to admire in yourself anyway.

Their attitude that they’re positively saintly for putting up with you, that nobody else would, means that over time, you come to believe that others must have seen these faults too, but been too polite to tell you. You become ashamed, not wanting to inflict your flawed self on anyone else, and will probably seem withdrawn and anti-social to others. Thus it’s easy for your partner to cast your actions or words in the worst light to others in turn, subtly running you down, and further isolating you. With no other opinions to compare your partner’s to, your judgement becomes skewed, and you continue to believe the worst. I eventually came to see myself as worthless, as a partner, as a mother, as a friend, and quite possibly even as a human being.

Many people seem to think that verbal and emotional abuse is ‘not as bad’ as physical abuse. “It’s just words.” Even the victim/survivor may think this, or be reluctant to reveal it, or even to see it as abuse. Those harsh words can actually often go hand-in-hand with physical violence, but even without a blow struck, they can be devastating. Without wanting to minimise the hurt from physical abuse at all, damage from a broken limb can heal faster than damage from a broken heart. Because that’s what abusers do to you. They break you. They shatter your heart, your psyche, your very sense of self, your will. I would say they reshape you to their liking – but you’re never to their liking. They’re never satisfied, there’s always more criticism. Nothing about you is sacred.

Even after you scrape up enough shreds of self-esteem to get out of the relationship, it can take a long, long, long time to realise what’s happened to you, and what you’ve lost. To give just one small example, my partner had me convinced that I was hopeless as a ‘home handywoman’. If I even started to do a job around the house, she’d sigh impatiently, and snatch the tool off me with a contemptuous “oh, give it here!” Afterwards, it took me more than two years to remember that before her, I’d actually been moderately competent at doing stuff. Not as expert as her maybe, but I’d known what to do with a screwdriver or hammer, I’d rewired electric plugs, swapped a faulty cord on an iron, and even done up old furniture. But under the onslaught of her contempt, I’d forgotten all that. I’d forgotten the very idea of being competent – at anything.

And it can be an even longer time healing. Even now, more than twenty years later, I still find myself squirreling out damaged parts of my psyche. For instance, I still have to remind myself that if I do something that’s not ‘how others (deep down, I mean ‘her’) would do it’, it’s okay. No-one’s watching me, about to pounce and tear me apart for it, I don’t have to constantly defend my actions or words anymore. But despite my best attempts to dismantle it, the kneejerk fear-reaction is still entrenched in me, not to mention the belief that the way I do things is ‘wrong’, even if it feels right to me. That’s how deep the damage can go. This is a battle I’m still fighting. Even writing this has stirred up old, painful memories.

My wish is that people will come to understand that emotional and verbal abuse is just as devastating, just as emotionally destructive, as physical abuse. That it can wreck people, wreck their lives, wreck their relationships with others, even wreck their physical health, and leave them feeling, afterwards, like a piece of wreckage washed up on a beach, no good to themselves or anyone else.

Never underestimate the power of ‘mere words’.

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.

The Emotional Difficulties of Autistics

Over the years, I’ve heard lots about the problems associated with being autistic – our sensory, social, executive dysfunction issues, etc. We have discussed them often, and often at great length. But I’ve never heard anyone, on the spectrum or not, talk much specifically about our emotional issues. They seem to be largely ignored by NTs, while autistics simply suffer through them.

And yet they loom large in our existences, often dominating our thoughts and our days, dragging us down into depressions or other mental illness, hampering our efforts to live full and good lives, and often leaving us feeling ‘stupid’, ‘inadequate’, ‘over the top’ or somehow ‘just wrong’ for having them.

Some of our emotional issues are internally caused, eg by alexithymia. We may not feel anything, when we think we ‘should’. Or we know we’re feeling something, but we’re not sure what. Or the feelings rush in, uncontrollable, overwhelming us, almost drowning us. Or they come at a time or in a way that’s not ‘appropriate’, causing us embarrassment, shame and distress. Simply identifying and managing our emotions can be an enormous battle in itself – and leave us feeling stupid and ashamed, simply for having to wrestle with something that ‘everyone else’ seems to manage okay.

And then there’s the emotions caused by our struggles with executive dysfunction. When your living spaces are knee-deep in chaos, you can’t seem to organise your way out of a paper bag or get to anything on time, can’t get proper meals together, and you feel like you look like you slept in your clothes (and maybe you did), and somehow it’s ‘all your own fault’ and you ‘just need to shake up your ideas’ (as others will no doubt tell you), it’s difficult to feel good about yourself, or about anything in your life. This can fill us with shame, embarrassment and anxiety, and cause low self-esteem and depression.

There’s also our social problems – by which I mean how people react to our efforts to connect with them, or simply co-exist with them. When our social efforts aren’t recognised as such (eg because we’re non-verbal, or we don’t do it in the ‘appropriate’ way), or we’re criticised, yelled at, laughed at, ridiculed, bullied, physically attacked, rejected, snubbed, etc, then we naturally feel a range of emotional reactions. Few of these are acknowledged or validated by non-autistics – in fact our reactions (eg meltdowns, social withdrawal) tend to be blamed on our autism, rather than being understood as reactions to how we’re being treated.

Sensory issues often compound our social problems of course – and add to the possibility of meltdowns, shutdowns, fleeing, or getting a negative reaction from others when you ask for help. If you’re constantly being told that you’re ‘making a fuss about nothing’, or to ‘stop your whingeing’ and that you should ‘just harden up’, it’s hard not to feel ‘weak’, ‘stupid’, scared and inadequate for this on top of all your other problems.

And then our responses to all these can be in turn be misunderstood by others, causing us to be dumped on even more, stressing us out even more... A vicious circle, causing a potent stew of pain, shame, self-loathing, anger and anxiety, which can see us so overwhelmed we end up curled into a sobbing heap under a pile of blankets, pacing back and forth stimming wildly, posting frantic requests for support on social media, or even self-harming. And then we feel shame for having those feelings, and shame for feeling shame… on and on it goes, till many of us are simply, well, broken.

A lot of our emotional issues are caused, therefore, not just by our ‘issues’, but by other people’s reactions to those issues, and/or by not having the right supports. In fact we’ve often had to create such supports for ourselves, or sometimes clued-up parents or aides will, by creating ‘emotion charts’ to help us name a feeling, visual or electronic schedules to help with time management or household tasks, specific guidance with social issues, and so on. But this help varies extremely widely – it’s often a matter of good luck rather than good policy, and the result is we suffer far more than we need to. It’s all a bit of a mess, really.

So I want to say this to autistics – that THERE IS NOTHING WRONG WITH YOU FOR FEELING THE WAY YOU DO. Your feelings are valid, a perfectly logical reaction to the pressures and stresses of our lives – including those stresses not being understood. You have the right to your feelings, and the right to seek support. And, flawed as our autistic community can often be, your fellow autistics are almost certainly the only ones who will understand and accept your emotions, and be able to help you through them, because we’ve been there too. Find your own tribe.

And to neurotypicals, I want to say this. If you want to know why we autistics have such a high rate of mental illness and suicide, LOOK NO FURTHER THAN HOW WE’RE TREATED. If you want to ‘fix’ our emotional states, first acknowledge our issues, then help us find the tools to do something about them. And change social attitudes to the autistic while you’re at it. Simply assuming that they’re ‘just part of being autistic’, and assuming that if you can ‘get rid’ of the autism somehow (newsflash: you can’t), they’ll just magically disappear, is not helping us at all.