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.

The 'Bogeyman' of the 'Low-Functioning'

It seems like every time an autistic advocate pops their head above the parapet and objects to some maltreatment of autistics, especially autistic children, somebody comes back with “but-what-about-the-low-functioning”, dragging in things like poop-smearing, meltdowns and head-banging. “You’re not like these kids, you don’t understand!”, they exclaim, again and again. As if we’ve never heard of such things, or done them ourselves, and as if ‘those’ autistics are a different species.

The ‘low-functioning’, in effect, have become the modern bogeyman. The stereotype that gets trotted out, time after time, cast as “the ones who really do need a cure”, and dragged out as defense against those of us who oppose things like bleach enemas, turpentine drinks, ABA, GcMAF, chelation, hyperbaric chambers and the like as false ‘cures’ for autism.

But I say casting them as this bogeyman is nonsense, a chimera, a false construct.

Why? Because –

1) It fosters a division that isn’t actually there. Functioning levels are actually meaningless. There aren’t any autistics, even adults, who are completely ‘high functioning’. Many of us were like ‘those kids’ when we were young - and some of us still are. But regardless of our apparent ‘functioning’, we can still totally support the neurodiversity perspective.

(There’s also a hidden threat in this - any of us, if we lapse in our ‘high functioning’, could also be subjected to these treatments – and sometimes have been. So basically, the underlying message is “let us do what we want to these kids, or we’ll do it to you too”.)

2) It presumes that the ‘treatments’ will actually help them. I’ve written about ABA before, it’s compliance-training, not a ‘cure’. And then there are the bleach enemas and so on. How anyone can think that these are a good idea to do to anyone is beyond me. How they think it’s going to ‘cure’ a neurological condition is even more perplexing. Yet people do so, causing huge physical and psychological harm to the children. Then they credit any advances the child makes to these bizarre and dangerous ‘treatments’, as though autistic children never grow and mature on their own.

3) It presumes that ‘extreme behaviours’ happen ‘just because’ of autism. We know this to be not true, but even when we try to explain the possible reasons for the behaviours, and offer advice and support, we’re often ignored or derided. Meanwhile, the autistic child/ren in question are indeed suffering - from lack of understanding, lack of supports, sensory overload, social stress, bullying, harsh ‘treatments’, falsely low assumptions of their intelligence, rejection, even institutionalisation and electric shocks… the list is a long one.

4) It presumes that the ‘low functioning’ are somehow different - to other autistics, and indeed other human beings. It casts them as virtually sub-human. They can no longer ignore the humanity of ‘high functioning’ autistics who speak up (though some still try), and so they focus on this group instead. But not only are functioning levels nonsense, as I’ve already said, I’ve read quite a bit of the writings of the ‘severely’ autistic, and I’ve never found anything in these that indicates their brains are radically different to other autistics. The differences are a matter of degree, not of kind.

5) It assumes it’s okay to treat even the ‘different’ like this. This is the crux of it really. Ultimately, it’s not even about whether the ‘low functioning’ really are separate/different from others, or whether the treatments prevent the ‘undesirable’ behaviour. It’s that it’s NOT OKAY to treat ANYONE like this. Ever.

It’s not okay to treat people like dogs, and browbeat, coerce, and manipulate them into submission. It’s not okay to shove bleach up their bottoms or down their throats, force them to drink turps or seawater, inject dodgy blood products into them, starve them with severe diets, give them electric shocks or subject them to chelation that leeches vital elements out of their bodies. It’s not okay to put handwash in a kid’s mouth for stimming, or forcibly hold their hands down till they stop flapping, or anything else that forces them to suppress their very way of being in order to be ‘acceptable’.

None of this is okay. And saying that it is okay because someone is a ‘low functioning’ autistic, is a breach of the human rights of ALL autistics. If even one of us is subject to these things, we are all at risk. And we know it. Even if we don’t think about it consciously, deep down we know it.

This is why we protest.

This is why we say ‘no more’, and ‘nothing about us without us’.

This is not just about preventing abuse, but about demanding our human rights.

So enough with the bogeyman. Enough with trying to scare us and parents of autistic children, enough with trying to silence us, enough with a false separation between ‘them’ and ‘us’, enough with casting the very children who most desperately need acceptance and understanding and support as some kind of demon or sub-human.

ENOUGH.

NOW.

My Blog Now Has Its Own Facebook Page!

For those of you who don’t follow me on Facebook, just letting you know that my blog now has its own Facebook page! I will post links to my latest blog posts on there, plus occasionally a link to the blogs of others that I especially like, and anything else which I find interesting, and hope that you will too!

The page can be found at https://www.facebook.com/strangeringodzone/

Enjoy!

The Individual Is NOT The Enemy

Over the last few months, I’ve become aware of a great deal of dissension, quarrelling, and general lack of harmony in the autistic community, most especially online. It seems to lead to a lot of quarrelling between individuals, which often turns quite nasty. I wrote my recent blog post on bullying, in part because I felt that at least some of this discord resulted from misunderstanding of other people’s words, and the consequent loss of temper.

However I see now there is a bigger problem, and that is that we autistics often can’t SEE the bigger problem. So I want to put an idea forward, and I’m going to capitalise it, so it sears into people’s minds.

The Individual Is Not The Enemy. I’ll say that again, because it’s very important – The Individual Is NOT The Enemy. 

What do I mean by this? It’s simple. We’re a very mixed bunch, often with little in common but our autism, and there are always going to be other autistics we can’t get along with. People whose beliefs we think are stupid or illogical or sexist or racist or whatever. People who make us shudder, who we wouldn’t want to even be in the same room with, let alone the same community. People who we think are nasty, egotistical, manipulative, bullies, trolls, or any number of other insults or labels, take your pick.

But they are NOT the Real Enemy. They are a nuisance, and often painful to interact with, but they’re not the real foe.

So who, or rather, WHAT is? The Enemy, as I see it, is twofold.
1)     The systematic oppression and repression of autistics everywhere.
2)     The disharmony amongst ourselves that stops us effectively getting together and fighting the Number 1 Enemy.

While we squabble amongst ourselves online, horrible things are happening to us in the real world. Autistic kids are getting dosed with bleach or turps (yes, turps!), or unsafe and bizarre blood products or overdoses of supplements, or shoved into hyperbaric chambers, or being drilled in the ‘compliance training’ that is ABA at its worst. Autistics of all ages are being discriminated against, sacked, excluded, rejected, locked up, harassed, raged at, bullied, assaulted and even killed. And our murderers are excused (as are the murderers of almost anyone with a disability), because our lives are deemed less valuable, and killing us a ‘mercy’.

And if we do dare to speak up, we’re told that we’re ‘too high-functioning’, that we can’t speak for the ‘real’ autistics. But we know that no matter our supposed functioning, none of us deserve to be treated like this. And that the line between functioning levels is both imaginary and arbitrary anyway, and that at any time, we might step across it, and hence become a target for that kind of treatment – and indeed many of us have.

Meanwhile, misunderstandings about just what autism really is are everywhere, in the media, the education systems, amongst professionals, and the public at large. We are repeatedly told that we are an epidemic, a disease, a burden, a disorder, broken, brain-damaged, thieves of the ‘real’ person supposedly hidden beneath our autism, or all hackers and criminals, emotionless zombies, ‘like psychopaths’, mass murderers, etc, etc.

And all this will continue as long as we allow it to. It’s not going to be easy to stop it, but we have to do it, because no-one else is going to do it for us. We are the ones being dumped on, and we are the ones who must stop it. But we can’t do it if we’re divided and fighting amongst ourselves.

So I believe it’s time to take a good look at how we interact with each other. To resist the temptation to throw insults if we disagree with someone. To control our tempers, and if we can’t, to take time out until we can. To keep our dialogues and disagreements respectful. To argue the issue, not the person.

I know remembering all this in the heat of the moment is hard, and that it seems to be harder for us to forgive and let go of our anger and hurt, especially when we can’t see any reason why we should. I’ve been there, done that too, alas, all too often.

But it truly is a waste of our energy. Because – and remember the point I made above – The Individual Is Not The Enemy. They really aren’t. They may seem like it at the time, but the actual enemy is out there, and crapping from a great height on each and everyone of us. All. The. Time.

So I believe it’s time for each of us to step up and become ‘the bigger person’. To let old hurts go, and old sins. We don’t all have to be best buddies, but we can keep it civil, and work together when necessary (or apart, if necessary), to change the world.

I’m not saying it’s easy. But I am saying it can be done.

Let’s do it.

Time To Step Up

A change has been happening for me lately. And that change is that I’ve realised I want to more actively fight for autistic rights, change the public perception and treatment of autistics, etc. To be more active as an advocate, in other words.

So why now, some might ask, and not years ago? 

I think the answer to that is many-sided. When I first began to realise that I might be autistic, nearly ten years ago, I had only a negative picture of autism. It wasn’t till I found other autistics that I began to see the real people beyond the stereotypes, and to understand just how much being autistic has shaped me. Nonetheless, it’s taken a lot of time and effort to dismantle the negativity piece by piece, to see it for the pure BS it all too often is, and to actually feel pride in being autistic. 

And, like so many autistics, I was damaged, carrying a truck-load of emotional crap from my years of struggling to survive in a world that, to put it mildly, is uncongenial to those on the spectrum. I was scared, angry, drained, cynical, baffled and repelled by the world, and in retreat from it. Most of all, I was hugely ashamed of my ‘difference’. I could not see it, or myself, in any positive light. In fact I’d become so used to concealing my true self, that it took years before I could even talk about it with my family, let alone ‘go public’ as an autistic.

Then there’s my own personal history. I was active in the feminist and anti-racism movements in my mid-to-late 20s, and then basically burnt out, and dropped out. I’d had enough. Once you’ve been to one demonstration or protest march, chanted the slogans and waved the banners and placards, you’ve basically been to them all. I also felt I didn’t have either the skills or the personality that it took to be a leader, and I was bored with being a ‘foot soldier’.

I was physically tired too. I’d been trying to do too much for too long – university study, political activism, struggling to survive on a benefit, being a solo parent, attempting to have some kind of social life and/or relationships, and all the time dealing with my ‘difference’. I was pushing the boat out further and further, trying to please, trying to be what I thought I ‘should’ be, trying to force myself into normality. It didn’t work, and I collapsed. I didn’t know what it was, but I knew I wasn’t well.

I still didn’t take the care of myself I needed to though, and a few years later I collapsed again, fleeing to the country to try to heal. Eventually, after ten years of illness and a third and even more drastic collapse, I was finally diagnosed with Chronic Fatigue Syndrome, but by then I was almost bedridden. My nights were filled with pain, my days with exhaustion. I was unable to do pretty much anything, I couldn’t even read. It took years to come back from that, a long, arduous and often boring recovery. And I still live in fear of stressing myself out to the point of another collapse, which I might not come back from again. I have become ruthless about looking after myself – because I must.

Hence I came into the autistic community with a whole heap of issues, and it’s taken me a lot of time to work through them. Even when I became aware that others were fighting for us, I felt that I was too tired, too old, too cynical and withdrawn from the world to contribute much. Or perhaps even that my writing was sufficient contribution to the ‘cause’.

But this past year or two, despite all of my issues, or maybe even because of them, I’ve come to see that none of these things are important anymore. And that the only way I can truly exist in this world, or co-exist with it, is as a thoroughly authentic autistic – proudly and openly so. Making the world adjust to me, in other words.

So I’ve realised it’s now time. It’s not enough for me anymore, to sit back and let the brave few go out there and fight for my rights. Moreover, I think it’s time not only for me, but for lots of us to get involved. Because being out there, often as isolated voices, is taking a heavy toll on those few. They’re getting abused, slandered, threatened, psychologically battered and bruised, some are even getting burnt out from their efforts. They need our help and support.

I know that many of us have been focused up till now on building community, which is of course hugely important too. But that task is pretty much done, at least online, and if we want our community to ever be more than simply a refuge from an unsympathetic world, then it’s time to use it as a ‘launch pad’.

I also suspect that while most of us are probably supportive of the advocacy others are doing, many perhaps think that joining them is too hard, or that they have too many struggles already. I know just how hard life can be as an autistic, and that we all have multiple issues to deal with. But if our lives are ever going to getting any easier, if we’re ever going to create a world that’s bearable not just for us but for the next generations of autistics, we need to make it so.

As I’ve said above, I also have my struggles, and I’m no spring chicken anymore. I have maybe 20-25 effective years of life left in me, provided my health lasts out, which is not of course a given. I know how long it can take, to effect real change, and I want to make those years count.

Some might say ‘But I don’t know what to do’. The best answer to that is – ask someone who’s already doing it, and who you admire, what you can do. Once you get involved, what needs doing tends to present itself. And we can do it - together.

I say to all of us – it’s time. Time to get involved. The advocates already out there need our assistance, or in some cases even to ‘pass on the torch’. Let’s get out there and change the world.

See you on the front lines…