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.

WHY THE 'LABEL' IS SO IMPORTANT

I’ve written before about identity and labels, eg here. But I think that I haven’t made it quite clear why one becomes the other, and why both are so essential.

To illustrate, let me give two examples from my own life.

The first is the ‘label/identity’ of being autistic. I grew up and spent decades of my adult life knowing I was ‘different’, but having no idea why. From the age of about seven onwards, I knew there was something ‘wrong’ with me, that I wasn’t like others, and much of my life has been dominated by that fact. I spent decades trying to either find out what my ‘problem’ was, or to get rid of it, to forcibly make myself ‘normal’, and just like everyone else. Neither effort was fruitful.

I became convinced that I was just not as good as other people, that I was weak, useless, pathetic, because I couldn’t cope with or do the things that others coped with or were able to do so easily. I was told ‘don’t be so sensitive’ ‘it’s not such a big deal’, ‘what are you worrying about’, ‘you’re making a fuss about nothing’, and so on. I was laughed at for ‘moving funny’, or ‘saying daft things’, or criticised for being ‘insensitive’ or ‘rude’ or ‘selfish’. It often seemed like nothing I did was right, I became scared to do or say almost anything. In the end, I withdrew from much human interaction, because I just couldn’t cope with it.

The result of all this is that I have suffered from low self-esteem, depression, anxiety and self-hatred for most of my life. This self-hatred went so deep, that even now, I haven’t gotten rid of all of it all. But an amazing thing happened, almost by accident. I began to read up on Asperger’s and autism, in order to help a student I was working with, and quickly recognised myself in the descriptions. To say I was surprised is something of an understatement. To say I was relieved, when I finally found that there were others like me, that I wasn’t ‘one of a (weird) kind’, a sort of lemon off the human reproduction line, is even more of an understatement.

What was a label quickly became an identity, as I studied more, read more, listened to my fellow autistics, discussed my ideas with them, shared my thoughts and feelings, asking ‘is this familiar to you? Have you ever felt/done/said this? Had this reaction from others?’ And the response was overwhelmingly YES! Yes, I know what you mean, yes, I’ve done that/been in that situation/felt that, yes, I’m like you.

I’m like you.

I wonder if anyone who’s never felt like they don’t truly belong anywhere can understand how profound that can be, to have people say that to you. To be understood, to finally, finally, FINALLY  know who and what you are. To be validated. To have the right word, the right ‘label’, the right IDENTITY, to describe yourself, a community to fit into, a ‘place’ to call home. To belong.

I don’t think there are words strong enough to describe that feeling.

This autistic identity is one that’s formed over the last ten to fifteen years. But there’s another, more recent, identity that’s been forming, and that’s to do with my sexuality and gender identity.

I always knew I was ‘different’ in this respect as well, and again, I had no labels for it, no words to describe it, I just felt an unease, a sense of ‘not fitting in’ to the prescribed feminine roles. I was designated female at birth, and have a female body. All my life, I’ve been okay with this in the sense that I’ve never felt like I’m male, but... I also always knew something wasn’t quite right (on top of the ‘difference’ I mentioned above, that is). I was called a ‘tomboy’ as a child, and had a sense that I ‘wasn’t like other girls’. Then as a teen and young adult I was totally uninterested in fashion, makeup, long nails, elaborate hairdos, etc. I conformed just enough to avert criticism, but never felt happy doing so. In fact all things ‘womanly’ felt… just not me, somehow. Yet  I didn’t like very ‘masculine’ clothes, or behaviour, either. I found both extremes not just an ill-fit but almost oppressive, like a sensation of being smothered.

Then, when I was in my mid-20s, I came out as a lesbian, and thought ‘oh, this is why!’ I joined the feminist movement and lesbian community, and for years this was my world. It liberated me (or gave me an excuse, take your pick) to chuck out ‘feminine’ clothing, ditch the makeup, and wear mainly jeans, t-shirts and sneakers. But I still felt somehow different to my lesbian ‘sisters’. I never called myself a ‘woman-loving woman’, for instance, as some lesbians did. I told myself it was because it was ‘too much of a mouthful’. I felt uncomfortable with many of their behaviours, and privately ruminated on how so many of the lesbians I knew hadn’t really ‘undone their feminine conditioning’. But I still felt like I was missing something. I groped for the words to describe it, I searched the literature, but there was nothing. Just a blank void that I echoed around in.

I struggled with relationships too – I always wanted to get to know a person first before jumping into bed with them. The result was that I’d often have to choose between being sexual before I was ready to, or missing out. Mostly, I missed out. And when I did get into a relationship, the problems weren’t over then. Some difficulties were due (I see now) to my undiagnosed autism. But there was also something else that yet again I struggled to define, a sense of being trapped by the ‘romantic’ role, or by simply being in a romantic relationship. And when it ended, my biggest feeling was always one of relief - the kind of ‘oh thank god’ relief that comes when you quit doing something that’s truly beyond your capabilities.

After my last relationship ended, I drifted away from the lesbian community, mainly because I just didn’t feel like i fit in. After a while, I found the autistic community, and made new friends. This soon became a new ‘home’, not least because of its higher rate of sexuality/gender variations, and higher rate of acceptance of them. Eventually, however, some deeper, nagging sense of difference reasserted itself.

I avoided (I realised later) describing myself as a ‘woman’, or even as a ‘lesbian’, and would say things like ‘well I’m female but not feminine’. I also developed an interest in reading about trans people, and in fact anyone else who didn’t fit into the gender binary. More recently, I also found myself reading about other different gender/sexuality identities, such as intersex, asexual, aromantic, all the grey and demi-identities, non-binary, etc, without quite realising why. I soon realised that I’m almost certainly ‘demi-sexual’, and probably also ‘aromantic’, though I’m still exploring both of those. It is however a relief to know that I’m not crazy, for feeling the way I do about relationships!

But it wasn’t till a trans woman friend chanced to remark “you’re a woman if you identify as a woman”, that something clicked for me. Because even as some part of me was mentally nodding, going ‘uh huh, yup’, another part of me suddenly said “….But I don’t identify as a woman”.

Well! To say that was a shock is yet another understatement! I reeled, and then it began to click. Of COURSE I’ve never felt like a ‘typical girl’ or a ‘typical woman’, I’m not one! I dived into exploring the whole non-binary thing, and was amazed. ‘You mean, there’s actually a WORD for what I am?’ There’s a reason I don’t feel comfortable with ‘feminine’ clothing, hairstyles, behaviour, etc, but feel almost equally uncomfortable with ‘masculine’ things/behaviour? There’s a neutral territory beyond gender, devoid of extremes, that not only myself but others exist in? Wow, wow, and wow!

Anyway, although many of my friends on Facebook already know, I guess this is my official ‘coming-out’ as non-binary! In case you’re wondering, I’m still fine with female pronouns, and have no plans to change my name or official gender registration, etc. (Please also note, I’m NOT criticising any non-binary who does, everyone makes their own choices according to their inclinations and needs, and this is mine. I’m too old, too cranky, too tired, too used to my current name - which I chose for myself anyway! - to feel any need to do it, even if I had the spoons, which I most emphatically don’t.)

This is my story, but it echoes that of many others too. Discovering that ‘label’ which becomes an ‘identity’ won’t solve all your problems (I still have plenty!), but it will solve one big one – that of your core identity; knowing who and what you are. No more floundering in whatever kind of social/emotional/sexual/gender/neurological wilderness you were in before. These labels I’ve mentioned, and so many others, are providing real clarity, real self-discovery, real comfort, and a real sense of belonging/solid identities for so many now. And no-one has the right to take that away from us, and to attempt to push us back out into that wilderness.

So think on that, before you disparage ‘all this fancy label nonsense’ or talk about how you ‘don’t want your child to be labelled’, or claim ‘it’s just a fad the young are getting into’. (Need I remind people that I’m far from young? And yet here I am, non-binary etc, anyway.) You may be denying someone the chance to find themselves and their true identity, and to finally feel ‘at home’ in their own skin.

So please, just think before you judge. Close your mouth, open your heart and mind, and listen instead. You might be amazed at what you find out about those you thought you knew.