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.

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.

Imposter Syndrome, and Getting A Diagnosis

An issue related to autistic shame is what I call ‘Imposter Syndrome’. I can best illustrate what I mean by this by talking about my own life. At a fairly young age, I realised I was ‘not normal’, not like the others around me. I perceived this as a lack of some kind, something others had but I didn’t, an inferiority on my part. I also realised it was something I needed to hide – because when my difference from others was revealed, in whatever way, a whole ton of negativity landed on me. So I definitely got the message, that this ‘not normal’ was not a good thing to be.

So I started to pretend. I watched others, I mimicked them, I modelled myself on them. I devoted a huge amount of my time and energies to learning what ‘normal’ behaviour was, and doing my best to present that to others. I built, in effect, a façade, a front or mask, of ‘normality’. This front was imperfect of course, a lot of negativity still came my way, and so I was forever revamping, reinforcing and refining it. I did this for years, decades even, of my life. I devoted time and energy to it that I now feel could have been better spent on enhancing my life in myriad other ways. And yes, I learnt a lot of what might be termed ‘social skills’ along the way – it was essential in fact, to the construction and maintenance of this front.

But there was a catch – the more polished my ‘mask’ or front became, the more l lived in fear. Fear of being ‘found out’. Fear of having someone ‘spot’ my secret abnormality, and exposing me with a pointed finger and a shout of “You! You’re not normal! What are you doing here amongst us regular people! Get out!!” Or words to that effect. Each occasion I ‘got away with it’, my fear that someday it would happen only increased all the more. I felt like an imposter, a ‘pretend normal person’, a sham, even a monster. It also had a ghastly feedback effect on my secret shame – the more I hid my true self, the more ashamed I felt of what I was hiding, and the more I tried to hide it, and hence the more my shame grew… And if any possibility of ‘exposure’ threatened, however faintly, I would redouble my efforts to hide it, and build that façade even stronger. While behind that front, my fear and shame gnawed away at me, corroding my self-esteem more with each year that passed.

And then I began the journey of realising I have Aspergers. This was a total surprise – I’d never thought that the source of my secret shame and façade had a name, an actual diagnosis. Even more, I had never thought there might be others like me. I thought I was the only one, ever. It was stunning, and very hard to take in at first, but also very welcome. I wasn’t ‘weird’ or ‘abnormal’ after all, I was an aspie!! With the aid of my new friends, the shame and the low self-esteem finally began to shift. I began, cautiously, to reveal that true self I’d hidden for so long.

However, over time a curious problem has developed. As I don’t yet (due to lack of money) have a formal diagnosis, that slip of paper or signed report or letter from some ‘expert’ saying that yes, I definitely do have this condition, my ‘imposter syndrome’ has done this strange 180-degree turn. Maybe, the little voice in the back of my head now whispers, maybe you’re just kidding yourself, because you want so much to fit in somewhere. Maybe you’re just ‘jumping on the latest bandwagon’, diagnosing yourself with the ‘condition de jour’, inventing ‘symptoms’ just so you can belong. Maybe, that voice says, it’s all in your head, and you aren’t really aspie/autistic after all, but just that weird, useless, deficient, sub-standard reject you always thought you were.

This despite having done every online test I can find (often more than once) and having had them all confirm I am well out of the NT range, not to mention several years of research that has confirmed yes, all my ‘quirks’ and ‘abnormalities’ can be explained by this label, the repeated and emphatic confirmations of my peers, and feeling accepted and understood for the first time in my life by those same peers. In spite of all that, still, still, there is this lingering doubt. I believe only that formal diagnosis will rid me of that doubt, this voice in my head like a worm nibbling at the foundations of my new and still precarious self-esteem.

And as if that’s not enough, there’s the irony that, having polished this NT act so well, sometimes when I have tried to tell people I have Aspergers, they refused to believe it. “I’ve seen Asperger kids, and you’re not at all like them!” I had to do a lot of explaining to some of my family, pointing out that I am forty years older than those kids and female anyway, and it manifests differently in females, before they slowly began to accept it. I know this has happened to many others on the spectrum also. It’s as if they see only the exterior, and not what it has cost to construct and maintain that, or what it still costs. They don’t seem to see how I force myself to endure, for example, sensory challenges that bring me close or even into overload; or understand how strange or new situations or people can frighten or overwhelm me. And so on, etc, etc, etc. I’m sure anyone who has ever experienced this ‘imposter syndrome’ will know exactly what I mean.

This is why I believe diagnosis is so important, for us adults on the spectrum. It’s not about being able to get access to services – for the most part, there aren’t any. It’s not about support – again, there mostly isn’t any, apart from what we give each other. It’s about knowing, for the first time in our lives, absolutely and without a doubt, what we are and where we belong. It’s about self-acceptance. It’s about killing that horrible wormy little voice of doubt within, and ridding ourselves, once and forever, of the crushing weight of the ghastly Imposter Syndrome. Being able, finally, to breathe free, walk with confidence, be our true selves, exactly as we are, without apology or concealment.

I live for the day that happens for me.