On Wanting To Be Normal

Recently I wrote a post on all the ways in which I’m different from the mainstream. It’s made me more aware than ever of the whole concept of ‘normal’.

I know that there are many, too many, autistics out there who don’t want to be autistic. Who just want to fit in and be ‘normal’. I don’t agree with their stance, but I can understand why.

If you’re a young person who’s spent their whole life having it drummed into you that autism is a wrongness that needs to be Fixed, Treated, Managed and Social-Skills-Classed the heck out of you, if you’ve drowned in ‘behaviour plans’, IEPs and ‘special needs’, then of course you would wish you weren’t autistic. There are young adult autistics who refuse to identify as such, or even talk about it or be in contact with other autistics, because they’re so sick of all of that.

And if you’re an older autistic who’s spent a lifetime being put down, criticised, reviled, rejected, side-lined and/or abused for simply being what you are, struggling with co-occurring conditions like Executive Dysfunction or Sensory Processing Disorder, whether you have a diagnosis or not; if you’re unemployed, friendless, maybe homeless, struggling with depression, anxiety and other mental issues or addictions, then you’re not going to see much value in being autistic, and will likely reject the autistic community, think it laughable even.

I also know there are even autistics, both young and old, who support ‘that’ kind of autism organisation and their research into eradicating autism. I feel for them, I truly do, and I understand why they would do this, even if I don’t think it’s a good path to take.

The biggest reason not to take this path is simply this – it can’t be done. It’s gene-deep, brain-deep, neurologically-deep. It’s in your very nerves, muscles and cells. You can’t eradicate it. The only way to ‘rid society of autism’ is for all autistics to die and no more to be born, ie you can only eradicate autistics, not autism. Which amounts to genocide. And even if you don’t think this is a step too far, and/or you’re thinking well at least this would mean nobody would suffer like you have, consider that there are autistics who don’t feel this, who want to be alive no matter how difficult it is, and/or whose parents, family and friends, especially other autistics, very much want them to be alive. And you don’t have the right to decide for them. And that the biggest problem in all the above is actually people’s ATTITUDES to autistics. If that changed…

So my feeling is that we might as well accept it, even embrace it, and maybe even try to make the world a little better for all of us not ‘normal’, or at the very least give a giant metaphorical raised finger to the world, with our being proud to simply be ourselves. Because why the heck not.

In light of all this, I look at my own life, and while it’s been difficult beyond words, and there were long spells when I did try hard to be ‘normal’, I didn’t ever really see that ‘normal’ as anything wonderful. The paradox is that the very traits that make me different from NTs are the very traits that led me to think what the heck is so superior about these people? And this was long, long before I had any idea that I was autistic. This is the other thing at the heart of rejecting wanting not to be autistic – why would I want to be something I didn’t regard as an ‘improved model’, even if they obviously did? So no, I don’t want to be NT.

What about the other characteristics that make me ‘different’? Being gay, for instance? I’m gay/lesbian because I don’t find men attractive. So why would I want to be someone who did? And non-binary – same. If I don’t identify with either binary, male or female, why would I want to be someone who did? Then there’s being an aromantic - if I don’t find romance exactly thrilling, why would I want to? Same with being introverted, why would I want to be one of those noisy extroverts who plague me? You get the picture, I’m sure. It’s all the same paradox, knowing that the alternative is more acceptable to society, but I simply can’t find it an attractive enough state to want to be it.

So in what ways do I wish I was ‘normal’? I think the biggest thing I’d rid myself of, if I could, is my physical disabilities. I’d love not to have CFS, or arthritis, or even an ankle that hasn’t been screwed up ever since I broke it. I’d love to have normal energy levels. To get up in the morning and go about my day, without needing hours to rev myself up to regular speed, because if I rush, I’ll get dizzy, nauseous, sweaty and probably end up back into bed. And that’s on a good day. Bad ones, I likely never get up at all, except to take the pills that help prop me up, eat the foods I need for same, or to go to the bathroom. Bad nights, I barely sleep at all. And the next day or even days, just plain suck.

It would be very nice to get at least somewhat closer to normal than this. But I know it’s not going to happen, that there’s not likely to be a cure for CFS in my lifetime. And also knowing that ageing and lack of fitness have taken away a great deal anyway. Having CFS sucks, but so does getting old.

Another way I’d like to be ‘normal’ is to not be poor. But that’s linked to being physically disabled for so long, and to some extent to who and what I am. I was never good at jobs, and was forced to drop out of university because of CFS – an illness caused at least in part by the stress of attending uni without the supports I had no idea I needed. There are, I suspect, many autistics with CFS or some other stress-related illness or disability, not surprising given the amount of daily trauma we suffer. I’ve made a lot of mistakes in my life, but I think the biggest was forcing – pushing - myself to attempt ‘normality’, that it has harmed me on a very deep level.

In summary then, there’s not many ways I’d want to be ‘normal’, and they are based on things I don’t feel are intrinsic to me, unlike being autistic, gay, introvert, etc. If I could change my financial or physical status, I definitely would. But as things stand, I can’t. So I’m kinda stuck with them.

Being autistic though? I wouldn’t change it for the world. Even when it makes my life very, very hard indeed. I am what I am, and I refuse to apologise for it. And nor should anyone else.

A Manifesto of Self-Worth For Autistics

I don’t know who in the autistic community needs to hear this, but I am telling you now –

YOU ARE WORTHY.

You are worthy of your space here on this planet, of being treated with respect, and of treating yourself with respect, no matter what your situation, or your feelings, or how others are rating you or treating you.

Because autistics don’t have to be perfect, or anything close to it, to be worthy of that. Nothing we do, or say, or are, or have experienced, matters beside this fundamental fact. It matters only that we’re human, and we’re here.

So it doesn’t matter if you make mistakes in life. Even a lot of mistakes. Even if it seems you do nothing but make mistakes. Or your mistakes feel like earth-shattering ones you’ll never recover from, or you’ve suffered severe social rejection/isolation/bullying/ridicule/whatever because of them, or for your stims, or for ‘just being weird’ either.

It doesn’t matter if you have public meltdowns so bad that even the memory of them makes you cringe, and you’re embarrassed to go back there or see those people again, and often ‘burn your bridges’ as a result.

It doesn’t matter if you ‘can’t get your act together’ (especially as mostly what people mean by that is that you should stop being autistic), or if it always feels like your life is falling apart, or that you never got it together in the first place.

It doesn’t matter if you’re unemployed, or homeless, or you’re in some other horrible situation that you can’t escape, because you simply don’t have the skills or emotional resources or practical support to get out of it. Or you have gotten out but still suffer from PTSD or other mental unwellness because of it, or you feel ashamed of having been that, or been through that.

It doesn’t matter if you need daily help to move through life, and nor does it matter if you don’t have and can’t get that help, so that everything feels like a total mess, or the help available is demeaning and patronising or even abusive, or just not what you actually need.

Nor does it matter if you’re not oral-speaking, or only intermittently so, and you’re deemed ‘low-functioning’, or you’re incontinent/faecal smearing/head-banging/whatever, so no-one expects anything of you, and treats you like a child or like you have no mind of your own.

It doesn’t matter if you are or have been incarcerated in an institution or prison or mental health facility, for whatever reason, and you’re ashamed of that, and feel that you must be a ‘bad person’.

It doesn’t matter if you’re poor, or physically disabled, or old, or single, or don’t fit into the whole cis-hetero thing, or people constantly tell you that you’re ugly, stupid, etc, or that you ‘deserve’ the bad treatment you get.

It doesn’t matter, even, if you can’t love or even like yourself, or you maybe really hate yourself, or feel you lack the qualities that would render someone likeable or loveable.

Ultimately, none of that matters. You’re still worthy anyway.

No matter your situation, no matter your ‘issues’.

Because you still matter.

You still have worth. You are still worthy.

You are still worthy.

YOU. ARE. STILL. WORTHY.

And, at the risk of sounding like I’m belittling other liberation movements and their very real struggles – which I’m definitely not – ultimately, it doesn’t matter how many other minority groups you belong to either, because YOU ARE NOT ‘LESS THAN’ because of that, because of your oppression being intersectional. You are STILL worthy of better than whatever bad treatment has been handed down to you because of all of it. ALWAYS.

Because you deserve better than what you’ve had up till now. All of us do. All of us autistics deserve better, all of us are worthy of all the rights other human beings can claim, as well as the right to freedom from the oppressions particular to our lives. Most especially, you are worthy of being counted as human. Even when others do not and will not count you as such – in fact, most especially when that happens.

Because those attitudes, those people, really don’t matter either. Not when weighed against the fact that you – all of you, all of us - are most emphatically still real, still human, still entitled to being treated with decency and respect, still worthy of the space we occupy and the air we breathe, still worthy of people’s time and attention, still worthy of a life where we can openly and freely be our authentic autistic selves and live our lives the way we want and need to live them, still worthy of the right to hold our heads high and be proud of being autistic.

So all that other stuff doesn’t ultimately matter, when it comes to our demanding our rights.

And these rights are non-negotiable, for each and every single one of you. No exceptions. You don’t have to prove anything, live up to anyone else’s standards, become what they want you to be, in order to qualify. Your existence is enough.

Because you’re worth it. You’re worthy of it, of those rights. You all are.

And I’ll say so again and again, for anyone who needs to hear it, even if you’re hearing it through your tears, through your rage, through your fear and pain, through your shame and self-hatred. Because – I repeat - you don’t have to do or become anything in particular to be worthy of the same rights and freedoms that others have.

You just have to be you. Autistic, and human.

And that’s enough.

Never forget it.

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.

I'm A Marginal Person

I live on the margins. I’m a marginal, a shadow creature, one of those who most people don’t even know exist, or are only vaguely aware of. I identify with all the other marginal – and marginalised - beings, who inhabit the world that lies beyond the harsh glare of nine-to-five, two-point-five mortgages, two-point-five kids and the house in the burbs. You know – the ‘normal’ world, inhabited by the straight white, cis, hetero, able-bodied, neurotypical, married, everyday people. Like you see on TV, in ads and programs and movies and so on. Normal people.

Please understand, I have nothing against them, I don’t dislike them or anything, in fact I find many of them fine people. I just don’t identify with them, and I can barely comprehend what it might be like to be them. And I guess they don’t really understand people like me either.

Us, that is. The not-so-normal ones. The socially rejected or scorned or ignored. The outsiders and the strangers and the simply ‘strange’. The autistics, the ADHDers, the dyslexic and the dyspraxic and the whole shebang of neurological ‘difference’. The gays and the dykes, the bis and the pans, the trans men and women, the aces and the aros and the happy-to-be-singles, the demis and greys and enbies and queers and all the rest. Or, for that matter, those who are not whiter than whitey-white, the immigrants, the disabled and chronically ill, the poor, the welfare beneficiaries, the homeless, the addicts and the mentally ill, not to mention the writers and artists and musicians and other creative types, and hell, even the hippies and nomads and rebels of all stripes, in fact pretty much anyone who finds their reality is not included in this supposedly wonderful ‘Norm’.

I don’t mean that I, personally, am all of these things (though I am quite a few of them), or that I know what it’s like to be all of these things. I mean that I most emphatically know the experience of being ‘not mainstream’, of being outside that norm, and so I empathise far more with these groups, collectively, than I do with the ‘normals’.

I also understand that many fall outside the norm in only one way, and wouldn’t consider themselves ‘marginal’ or even perhaps ‘marginalised’, and possibly are fighting to be included in the mainstream. How much any given individual feels marginalised tends to vary according to how many non-mainstream attributes you have. One, and you may reject any idea of being ‘marginal’. Lots, and you’ve usually given up on normal. Some don’t even care about it anymore, and some positively relish their marginal status. While if you have just a few attributes, you could be anywhere in-between. It’s a very individual thing, and no-one has the right to tell another how they should see themselves, or who they should identify with, or how they should live their life.

But all of us on the margins - beyond the boundaries of ‘normal’, in one way or another, and sometimes in multiple ways, being pushed further and further out beyond the back of beyond, in the eyes of ‘normals’ anyway - we inhabit our own universe. In that universe (or perhaps it’s a variety of different universes?), we connect, sometimes, with each other, and fail to at other times. We network, and fight, and disagree, and fall apart, and carry on anyway.

And our lives, our universes, are all too often invisible to the ‘normals’.  If they do encounter us, they sometimes refuse to acknowledge that our lives are actually different to theirs. “But everyone feels like that sometimes.” “Aren’t we all a little bit autistic?” “What do you mean, you don’t like sex/romance? Everybody wants a partner!” “I’d kill myself if I had your life.” “He/she’s just making a joke, it’s not really racism/sexism/homophobia.” “Non-binary? That’s not even a thing!” “But you’re in our country now, you should speak English.” And so on, and so forth.

But we know. We know our own truths. We live them. We know our day to day struggles are real – everything from wheelchair access to sensory overwhelm to pain management, from the lack of services to the lack of acceptance to the many micro-aggressions. And sometimes not-so-micro aggressions. We know it. Does it make us better people? Maybe. Sometimes. And sometimes not. All too many of us are simply left bitter, angry, hurt, sad and reeling away from the world. And even if we are stronger for it, I think most of us would still rather go without all the stuff we went through to get there.

Because we’re stressed out. It’s not fun to feel excluded, to never or rarely see our lives depicted in movies or on TV or in books or even just in a damn ad. (And why are so many movies and TV shows, even now, about The White Male Experience, especially the whole white-male-saving-the-day thing? I could write a whole book on this one, and no doubt someone already has. But do the movie and TV people ever think that even many of those who are white, might like to see something, y’know, different?)

Anyway, all this feeling invisible, ignored, overlooked, not valued or recognised, being the recipient of all sorts of bad treatment - prejudice, stereotypes, belittling, rejection, misunderstanding, mocking, ridicule or even outright violence – none of it is fun. But it happens. And it happens so often, and even if we complain about it, it’s obvious that the ‘normals’ don’t much care, really.

And that’s what cuts.

It’s not being different that’s the problem. It’s how others respond to us. We are what we are. Whether we hate it, love it, simply accept it or just wish we weren’t in a particular category, we are these things. And can’t be anything else. So why shouldn’t we feel pride in what we are? Why shouldn’t there be gay pride, indigenous rights movements, multi-cultural celebrations, autistic pride? Why should we not campaign for recognition, for human rights, for acceptance, and so on?

And what’s wrong with being different? Why are so many insistent we all be the same? What’s so great about being all alike? Why do the normals get to decide what we should aspire to, and why do they think they’re so wonderful that we should all be copying them anyhow? Did it ever occur to them that we just wanna be our own goddam selves, and not copies of them?

And I can’t help wondering, in the midst of this Covid crisis, whether it’s going to change anything for us. For most of my life, when I’ve looked around, I’ve seen a world increasingly skewed towards the superficial, the self-serving, the frenetically materialistic, and all too often the simply nonsensical. But this crisis has forced a change in many (apart from the usual idiots of course), it might even be that some serious changes will happen.

Our Prime Minister, Jacinda of international fame, has repeatedly urged us to ‘be kind’. And certainly there has been a surge of public-spiritedness evident, along with the Zoom conferences, the gee-we-can-work-efficiently-from-home-after-all, the endless hand washing and the social-distance-at-the-supermarket thing. But has this kindness been extended to real understanding and support for us marginal people? (Was it ever really anyway, except as patronising acts of inspo-porn, or other ‘feel-good’ exercises?) Will there be a wholesale change in how we’re seen? Or will this new-found public milk of human kindness vanish along with the need for hand sanitiser?

Who knows?

But whatever shape the future takes, one thing is certain – that I’m a marginal person, and always will be. The marginalised are my people, my tribe, and I’m happy with that, even if I’m not happy with how we’re treated.

How do you identify?