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’.

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.