Wednesday, 7 April 2021

Things I Wish I Never Had To See Again

 So here we are in April again, and the legions of Autism Awareness are out again. I’ve become quite cynical or maybe just jaded in recent years, as it sometimes seems like the more things change, the more they remain the same. There are so many things, so many people, I wish that I never had to see again. Here are the most prominent of them, and what they say, sometimes outright, sometimes not, but always implicit.

‘Autism mommies’ (and sometimes daddies). (Aka warrior mommies, or martyr mommies on a bad day.) “You’re not like my child, you’re too high-functioning, if you can post online then you’re not really autistic/not autistic enough to understand, what about the ‘real’/‘severe’ autistics, you don’t know how hard it is to raise these children, my child will never be independent, you’re so rude, if you would tone down, if you would shut up, you should say that you ‘have autism’ not ‘am autistic’, I am an ‘autism mom’, I’m fighting autism every day, I am my child’s voice, I want my child to be ‘normal’, my child loves ABA, I don’t care if adult autistics don’t like it, I’m going to Light It Up Blue/wear the puzzle piece/support Autism Speaks anyhow, you’re not really autistic anyway so your opinion doesn’t matter…”

ABA defenders/promoters. “I’m sorry if you were hurt but that’s not ‘real’ ABA, that’s ‘old’ ABA and we don’t do that anymore, my ABA isn’t like that, our children love ABA/their therapist, it’s scientific and ‘evidence-based’, we’re helping these children, we’re teaching them skills, we’re teaching them how to be like other kids, you must want them to not have any therapy or help then, you must want them to grow up to be like animals screaming and pooping in their pants, we’re helping their families, this is what the parents need, it’s not true that ABA is torture or abuse, we don’t punish them anymore, you don’t know what you’re talking about, you’re not really autistic anyway so your opinion doesn’t matter…”

Inspiration porn peddlers. “Look at the wonderful boy who asked the nerdy girl ‘with autism’ to the prom, isn’t he wonderful, such an inspiration, look at this program or device or special class that’s ‘helping’ children ‘with autism’ learn how to talk/interact ‘like normal’/play special sports/be a team mascot, isn’t it inspiring, aren’t they good for doing this, aren’t we good for sharing this? Look at how our faces soften, our smiles beam wide, our eyes glaze over with our own goodness and compassion for these poor creatures, isn’t it inspiring? …What’s that? No, we didn’t ask the autistic kids/teens/young adults what they thought about being ‘helped’, we didn’t include their words, their responses, their ideas, in our article/news item/puff piece, because we already talked to their parents and teachers and the ‘experts’, so it’s not necessary…”

Media bias and ignorance about autistics. “Autism is a disease/epidemic, it’s brain damage, it’s a layer that must be removed to let the ‘real’ child shine, the world would be better off if there was a cure for autism; it’s a childhood thing, mostly little white boys, they’re non-verbal and almost mindless, they lack empathy or understanding of others; they’re nerdy young white male computer geeks, with no caring or empathy and zero social skills; people are saints to put up with/help them, their parents deserve a medal… what’s that? Ask the autistics what they’re feeling? Communicate with them? Consider how things might look from their point of view? Consider whether there might be autistics that don’t fit into these narrow little categories? But we already know All About Autism, because we’ve talked to their parents and teachers and the ‘experts’, so it’s not necessary…”

Biased research on autistics. “We must compare autistics against the ‘normals’ and discover their defect, because any difference is a pathological one, in no way can autistics ever be seen as okay or maybe even better than non-autistic controls, even if we must invent new terms or slant the research results in favour of those controls, even if that involves recasting morally or socially dubious results as ‘good’, and autistic’s purer motives as ‘bad’, because just being autistic is a wrongness in itself, so autistics can never be better at anything, everything they do is wrong simply because they are autistic…. What’s that? Autistics are fine just as they are? They’re not an inferior version of ‘proper’ human beings? Impossible! We’ve already outlined their deficiencies, and we’re the experts anyhow, we know autism best, so it’s not necessary to change what we’re doing…”

Violence against autistics. “Autistics bring in on themselves because they’re weird, they’re the r-word, they’re ‘natural’ targets, what do you expect, if they’d only behave properly they wouldn’t get bashed and bullied and murdered, it’s their own fault; if my child could just be normal I wouldn’t have to do this to them, if I didn’t have an autistic kid my life would be so much better, they’re better off dead anyway, they drove me to it, I’m the victim here; these kids need controlling and suppression so it’s only right that the usual rules shouldn’t apply to them, it’s only natural that teachers don’t want them in their class or have to put them into isolation rooms or tie them into chairs or hold them down on the floor or have them arrested no matter what their age, it’s only right that the Judge Rotenberg Centre uses electric measures to keep them in line, it’s only natural, I mean they’re animals really, so what does it matter what’s done to them… What’s that? Human rights? But they’re Not Really Human, so…”

We know none of this is true.

We know it in the depths of our bones, in the depths of our hearts, in the aching depths of our pain. And we’ve told them so, again and again and again… but they still aren’t listening. In fact, far from listening, too many of them keep coming on to our pages or groups and talking over us, telling us how wrong we are, how defective, and how They Know Better and it’s Their Responsibility to Educate us… and get furiously offended, or loftily ‘forgiving’ and ‘above’ us, when we reject that so-called education. We’ve seen it all before, heard it all before, so many times. Too many times. It just doesn’t seem to end. We have more allies now, but somehow we seem to have more enemies too.

And meanwhile, we suffer. We bleed. We live in agony.

And no-one listens to our screams, our protests, our pleas.

They’re not listening.

I am so tired of this. I wish I could never hear any of the above again. But I know I will. And that’s why I am so tired and jaded and cynical.

Are you sick of autism awareness yet?

Friday, 12 February 2021

On Being Aromantic

For some time now, I’ve been reading up on aromantics, and what it means to be one. And the more I read, the more I know that I am one too. It’s really the only fit explanation for the struggles with relationships that I’ve always had.

But let me emphasise here what some of the websites I’ve read also stress – that each person’s experience of being aromantic is going to be different. The common core of experience seems to be the feeling of one’s inner nature being somehow incompatible with romantic relationships.

So what does being aromantic mean for me? Firstly, let me tell what it doesn’t mean.

It doesn’t mean that I’ve never had relationships. When I was growing up, ‘everybody’ dated, got married, had kids and ‘settled down’. It was just what you did, unless you were maybe a nun or priest. Popular culture dosed me up with the romantic ideal of The Right One who would sweep off my feet, fulfil me, transform me. As a young undiagnosed autistic with a yearning to be ‘normal’, I swallowed this pretty uncritically, though I do remember saying once that I was never going to get married – because I didn’t fancy becoming a housewife – but I was laughed at by the adults. ‘You’ll change your mind when you get older!’

And in a way, I did. Or rather, I succumbed to societal expectations, and started dating. I also knew that I wanted to explore sex and have children, and a relationship seemed like the price you had to pay for that. (I’m also demi-sexual, so one-night stands don’t really do anything for me. Just to make things complicated.) And if I found my dating experiences awkward, I told myself that I just hadn’t met The Right One yet. I married and had a child, and yes, became for at least a short while a housewife. I loathed it. I finally admitted to myself that I didn’t like sex with men either. I left the marriage and came out, but all I did was switch my search from Mr Right to Ms Right.

The sex was better, but my relationships continued to be awkward failures. And after each one ended, I felt a lot of emotions, but most especially relief. The kind of relief you get when you stop doing something that’s not just inherently wrong for you, but way beyond your capabilities. I spent long periods celibate, trying to ‘sort myself out’, eventually coming to the conclusion that I just couldn’t ‘do’ relationships, and choosing to become permanently single. When I realised that I’m autistic, I thought at first that this was why I struggled with relationships, but then I realised that other autistics were able to do them way better than me. There was Something More.

It also doesn’t mean I’ve never had a ‘crush’/fallen in love. Although looking back, there was a kind of desperation in this. I was always falling for those way out of reach and/or totally unsuitable. (Maybe because they were ‘safe’?) Nor did these feelings - a heady mix of lust and turbulent emotions fueled by my yearning for the promised fulfilment/transformation - ever bring me an ounce of joy. Each time, I was convinced that this time would be ‘The One’, the one who would Change My Life, change me, make me like everyone else. It never happened. In most cases, the feelings didn’t even lead to a relationship. (The ones I did have, tended to happen without that.)

After a while, the crush would die a natural death, leaving me feeling flat and empty, but also relieved. I had myself back. Often, I would realise that the person I’d fallen so hard for was not what I’d thought they were, and become distinctly unenchanted. But I’d still do it again, and again… Eventually however it became so painful that I made a promise to myself to stop. Despite my experiences, letting go of that fantasy of transformation was difficult. I really yearned for ‘normal’. But I did succeed in letting it go, and I’m much happier now. I like my emotional balance intact.

Once I did stop falling for people and idealising them, I realised that there isn’t any magical The One anyway, especially for me, that everyone is simply human, and hence imperfect. Realising that meant that I couldn’t see any point in choosing just one person to put above all others. If they weren’t Perfect and Magical, why bother with the struggle? Ever since, I’ve invested my energies in creating significant non-romantic connections instead. It’s enriched my life whereas attempts at romantic relationships always worsened it.

So - if it’s not the above, what does being aromantic mean for me?

It means that I really don’t ‘get’ romance. I’ve always been bored by the romantic scenes in books and movies, and, in the rare instances they don’t happen, relieved. The whole hearts, flowers, moonlight thing - I mean, they’re pretty and all, but the idea that something special is supposed to happen because of them? …Um, what, exactly? Partners would scold me for being ‘unromantic’, and I tried, I really did, but I invariably just ended up feeling awkward and stupid, a failure on yet another count. I didn’t even like holding hands much. It just meant sweaty palms and being thrown off balance as I walked. Kissing, too, tended to trigger sensory overloads I didn’t understand, and which no-one else seemed to either.

I also couldn’t understand why so many, especially women, seemed prepared to sacrifice everything for a partner, even moving hundreds of miles and abandoning their former lives. I couldn’t imagine giving up my whole life for just one person. When an abusive partner did manipulate me into a degree of distancing from friends and family, I was miserable, and ended up loathing her for it.

Moreover, the older I got, the more I felt that relationships, of all kinds, are formed in the day-to-day caring things, not giving someone a bunch of flowers. It’s always mystified me that others feel this ‘Romance’ thing is so important, that their lives and relationships are lacking something vital without what feels to me like a bunch of nothing. If a romantic type can tell me what the point is, I’d be interested to know. But I still feel that it’s not something that works for me. My problems with relationships, however, go deeper still than this lack of romantic leanings.

I don’t get what others get from relationships. I used to hear people say, “oh, relationships are such hard work”, and I’d wonder, well, why do you do them then? Until the day I finally realised, they do it because they get a reward for all their hard work. They might put in, say, one part hard work, and get back maybe ten or twenty parts reward. And that’s where I differ. For me, relationships are more like ten or twenty parts hard work and one or no parts reward. In fact, I don’t even really know what the rewards are supposed to be.

I don’t need or want someone always at my side. The idea of ‘growing old’ with the same person always around makes me feel faintly nauseous or trapped. Nor do I want anyone in my face 24/7, or even just at night. I don’t like sharing a bed with anyone, let alone a house or a life. I can’t ‘meld’ my living spaces with others, rooms are either mine or someone else’s. I don’t even want a ‘listening ear’ - if I have a problem, that’s what my friends or family are for. I’m perfectly happy with living alone, being my own independent person, going my own way, not beholden to another. It’s simply how I’m built.

And being aromantic means, most of all, that I’m uncomfortable in relationships. This is something I find really hard to put into words. If I say that I was always unhappy, people tend to say ‘you just haven’t found the right person yet’, or ‘just because your past relationships were toxic, doesn’t mean you can’t have a good one’. And there’s no doubt I’ve had some bad ones. But I realised long ago that the problem isn’t bad relationships, but that relationships aren’t right FOR ME. I feel ill at ease, emotionally out of kilter, thrown off my centre, oppressed, even trapped, by them.

Trapped by the ideal of ‘partnership’, of expectations from society or partners as to how I’m supposed to be or behave, by the whole concept of going through my life in lockstep with another person. I would always feel wretchedly miserable, crowded, and suffocated. Inevitably, at some point, I would turn around and look at them and think “…who are you? What are you doing in my face, in my bed, in my house, in my life?” I’d then feel guilty, and suppress those feelings, but they would come back even stronger, and the relationship would sooner or later die.

Now, in no way am I saying that everyone should follow my path. If someone needs a partner to be happy, and they find the right person, I’m happy for them. Why would I want them to take a path that’s going to make them miserable? What good would that do? All I ask is that they accord me, and my fellow aromantics, the same freedom to choose what’s best for us as individuals. Nor am I denying the strength of the bonds they feel with their partners. I only want that non-romantic bonds be recognised as just as important.

Romantic types need to realise that the whole romantic thing just isn’t everyone’s bag. So much of our culture revolves around the unspoken assumption that everyone is either paired or seeking to be, that this is the only ‘healthy’ way to live, an assumption particularly visible right now with Valentine’s Day looming. But not everyone wants or needs a romantic partner, and it’s definitely possible to be happy without one. Some of us are simply made different. And to deny that, to not listen when we try and tell you how it is for us, feels like somewhere between gaslighting and just not getting the message. If you tell us that we ‘just need to find the right partner’, you’re projecting your own need for a romantic relationship onto us, in a manner akin to the heterosexuals who tell gays ‘you just haven’t met the right person of the opposite sex yet’.

You don’t need to understand us, just accept that we’re different. That we’re not heartless or cold, but that we get our needs for closeness and connection met in different ways. Is that really so hard to do?

A final word here for those who think I’m ‘just being trendy’, or who wonder ‘why the need for a label’. I’ve spent most of my life struggling with these feelings, and with relationships. Even when I recognised that romantic relationships were Not My Thing, I still thought I was flawed or wrong in some way for feeling this way. I kept it all to myself out of shame or fear of others not understanding. Finding that there’s a name for what I feel, for what I am, that there are others like me, has been a liberation. It’s also worth noting that I’m in my sixties – this is not just a young people’s thing. We’ve been around forever, but without any way to describe or label it, there wasn’t any way to form a positive identity around it and forge a path to self-acceptance, let alone get others to accept us. The ‘label’ is a path to freedom, not a fashion we’re following. Get used to us, because we’re not going away or changing any time soon.

Thursday, 21 January 2021

The Public Image Of Autism Is All Wrong

The public image of autism is all wrong.

Well, duh, most autistics are probably thinking about now. But I want to dive deeper into how it’s wrong, and how thoroughly distorted that image is.

It seems to me that there is an entire tangle of intertwined fallacies about autism in the public domain. Some are just assumptions based on meeting an autistic child, or hearing about one, or seeing one on TV. Some are based on beliefs about ‘normality’ or ‘good behaviour’ or ‘spoilt brats’. Yet others are spread by those who make money out of anxious parents or bewildered schools, but have become part of ‘public knowledge’ about autistics. And some are, or have been in the past, solemnly pontificated by ‘experts’ (who are rarely if ever autistic themselves), whenever autism crops up in the media.

The more you look, the more you realise that there are so many of these fallacies, but I’ll try to isolate out the big ones, which, I believe, lie behind most of that tangle.

1) That there are different types of autistic. It doesn’t matter whether you label them low/high functioning (labels which are deeply problematic in themselves), or Asperger’s vs classic autism, or group them into levels, or whatever. The separation in people’s minds persists. So people will hear ‘autism’, and think, at one extreme, of the stereotypical non-verbal young boy, probably white, who sits in the corner either screaming or rocking or spinning objects, possibly soiling himself. These kids are often seen as the ‘real’ autistics.

And at the other extreme, they’ll maybe have an image of a highly intelligent but socially inept teenager/young adult (again, usually a white male), possibly with personal hygiene issues, who’s a hacker/maths/science geek. Either way, the picture is both inaccurate and unflattering, not to mention making any autistic who doesn’t look like either of these pictures virtually invisible.

A central feature of this fallacy is that only children are autistic, and that we somehow grow out of it. The almost complete absence of adult autistics in the media imagery furthers this notion. People also believe that the ‘more autistic’ you are, the more you ‘suffer from’ autism. So if you’re at the ‘high-functioning’ end, then you don’t have any ‘real’ problems, and should just shut up and get on with your life. It also sometimes leads people to say silly things like “we’re all a little bit autistic”.

The issues caused by this division of autistics goes deep. Those thrown into the ‘low functioning’ category routinely have their intelligence denied, their attempts at communication ignored, and/or get subjected to harsh ‘therapy’, or the kind of abuse that tends to get dished out to those who can’t complain. Meanwhile those deemed ‘high functioning’ have their very real difficulties overlooked, and go unsupported and often completely alone with their struggles. And heaven help you if they can’t slot you neatly into either category, you fall completely between the cracks.

The truth however is that THERE IS ONLY ONE TYPE OF AUTISM. You’re either autistic, or you’re not. End of. You’re either autistic or you’re not. Whatever our ‘functioning label’, etc, we all share an autistic mind. How this manifests in each individual is what creates the differing presentations of autism, NOT autism itself. Which brings me to my second fallacy.

2) That co-occurring conditions are ‘autism symptoms’. This is an important point. Many of those slotted into the ‘low-functioning’ category actually have other conditions, such as ataxia, apraxia, etc, which I believe are at the core of their inability to verbalise their thoughts and understandings. And because they can’t talk, people assume they have nothing to say, that they’re unintelligent, an ‘empty house’, and certainly not considered worthy of the same rights as others (this may not be conscious on most people’s part, but it’s definitely there). That this approach doesn’t actually help is ignored or not seen as important. It’s the person, or rather their autism, who’s the issue, in their eyes, not their treatment. A circular thinking is thus created – the person is ‘beyond help’, and therefore you shouldn’t try to help them.

Even for the so-called ‘high functioning’, many of our problems are co-occurring conditions too, whether inborn ones such as sensory processing disorder, or acquired ones like anxiety disorders. We may also struggle with communication or movement disorders, even though we’re not supposed to have them, and so evidence of them is ignored or suppressed. We’re considered ‘close enough to normal’ to ‘pass’, and so it’s demanded that we do, at whatever cost.

But the core problem here is that NONE OF THESE CO-OCCURRING CONDITIONS ARE ACTUALLY AUTISM ITSELF. They also occur in non-autistics. They may be more severe in autistics, or more common amongst us, but they’re still not exclusive to us, and are not central to being autistic.

And until these conditions are disentangled, correctly diagnosed and dealt with, there will be no improvement in the lives of most autistics. It’s not enough to say ‘this person is non-verbal, therefore non-intelligent, so nothing can be done with them’, or ‘this person is anxious due to their autism, therefore nothing can be done for them’, etc, etc. An entirely different approach is desperately needed.

3) That autism can be removed or ‘cured’. At the core of this concept, is the idea that autism is a sort of detachable layer, or that young autistics are somehow malleable enough to stop being autistic, with the right treatment. So much effort is put into making us “indistinguishable from our peers”. Yet so much of this effort is not only pointless, but unnecessary, if you simply accept autistics as they are (yes, even the ‘low functioning’ ones. They need acceptance most of all.)

But even if being autistic is grudgingly accepted as inherent in the individual, many still think it worthwhile to make us seem as non-autistic as possible. There are two unquestioned assumptions to this – firstly, that being, or at least appearing, neurotypical is superior to being autistic. Secondly, that this will magically make our lives easier. Our social lives will improve, we’ll get jobs, be happier, find partners, merge into the general population, blah blah blah.

The big problem with this fallacy is that IT. JUST. DOESN’T. WORK. You can give an autistic kid all the ‘social skills’ in the book, but the other kids in the playground will still pick them out as ‘weird’, and pick on them, bully them or reject them. Adult autistics have similar experiences. Teaching us to hide our autism won’t save us. It could even be argued that it makes things worse, because, whether others know we’re autistic or not, they still see what we are as somehow ‘bad’.

Even more importantly though, is that even if we can completely ‘pass’, the cost of it is extremely high, because WE ARE ESSENTIALLY PRETENDING TO BE SOMETHING WE’RE NOT. I don’t think I can emphasise that enough. Low self-esteem, depression, anxiety, poor mental and physical health, self-harm, and even suicide attempts (some successful) are almost inevitable results of spending almost our entire time acting. It’s rather like someone gay in the closet back in the days before gay liberation, not only concealing their sexuality but actively pretending to be heterosexual. As someone who has spent years in both types of ‘closet’, I can confirm that it takes a ginormous toll.

4) That autism is a ‘disease’ or ‘epidemic’. This is based on the rising rates of diagnosis, and on that core belief that simply being autistic is a Bad Thing. Those who hold this belief (or profess to, for financial gain) will talk solemnly of the ‘burden’ on society, families and schools that we present. They’ll pathologise all our behaviours, even the harmless ones, insist on various therapies, milk anxious parents or compliant educational authorities, and generally try to lock us into boxes that actually separate us from those peers they’re supposedly wanting us to become more like.

When the actual truth is that AUTISM IS SIMPLY A DIFFERENT WAY OF BEING. A different way of seeing, interpreting, thinking, processing and reacting to the world and the people in it. We often say ‘it’s not a software glitch, but a different operating system’. But when we try to tell people this, too many slam back with stories about autistics soiling themselves (why are they so hung up on poo?), or ‘my child will never be able to care for themselves’, etc, etc, etc, ad nauseum. Non-autistics have NO IDEA how tired we all are of ableist ‘autism mommies and daddies’.

Another, related truth is that WE’VE ALWAYS BEEN HERE. If you doubt me, read Silberman’s Neurotribes. Read any account of ‘changeling’ children, or children ‘possessed by devils’ in medieval times. Read about past generations committed to mental hospitals or asylums, locked in attics, or simply killed because they were ‘not right in the head’. If anyone wants to know ‘where were the autistics in past generations’, that’s where. The ones who could ‘pass’ became rich eccentrics, steady workers, faithful husbands and wives, lonely shepherds or quiet nuns, visionaries and prophets, and just day-to-day people who went unnoticed in a quieter, slower, more family-orientated world.

Some may ask, so what? What does all the above matter? Why is it important if people have the wrong ideas about us? It matters because IT IS HURTING US. It is hurting us so bad, and so much.

It hurts us when our intelligence is demeaned, or our problems are ignored.

It hurts us when we have to act like NTs just to get even a modicum of respect.

It hurts us when we’re put through horrific so-called therapies like ABA, and get PTSD as a result.

It hurts us when even the way we move and the things we love are pathologised, and they force us to stop doing them.

It hurts us when we blunder through our lives without help, constantly confused and overloaded, feeling like we’ve stumbled into a swamp with no idea how to get out.

It hurts us when we’re misunderstood, our words twisted and our motives doubted.

It hurts us when we’re ridiculed, rejected, beaten up, manipulated, abused or even murdered for the ‘crime’ of being autistic.

It hurts ALL autistics when some of us are told that we’re ‘not really’ autistic, and that we shouldn’t worry about how ‘those other autistics’ are treated, because ‘they’re not like you’. When we know that they’re actually our brothers and sisters, and our next generation.

It hurts us. All of it hurts us. And it’s got to stop. These misconceptions need to be dismantled, thrown out as the rubbish they are, and a new vision of autism and autistics take their place. Because we’ve suffered enough, and it’s time for it all to stop.

Because it hurts.

It hurts.

So please.




Tuesday, 3 November 2020

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 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.


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.

Thursday, 27 August 2020

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 fa├žade? 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.

Friday, 26 June 2020

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’.


Like a lot of people, I’ve been watching the Black Lives Matter protests. What strikes me every time I see the clip of that cop kneeling on George Floyd’s neck, is how little he’s worried about being on camera. He’s watching the bystanders, sure, but only, it seems to me, to judge whether they’re a further threat. Being videoed kneeling on someone’s neck till he dies? Nope, not a worry.

Why? Because cops like him have done this, and worse, to many black or brown people in the past, and gotten away with it. And I bet that he’s not even that worried now, because even in the rare cases where charges are laid, cops usually get acquitted, or a minor punishment. He’ll be expecting the same. It’s not over yet, not by a long shot.

Because pretty much everything done ‘in the line of duty’ has been excused or overlooked by complicit police administrations, passive civil authorities, and a judicial system reluctant to believe any wrongdoing on the part of police, even when confronted with glaring evidence of it. And so they  assume they can get away with practically anything.

The signs are there, for anyone to read. There’s some kind of corruption of spirit – there’s no other way to describe it –  at the very heart of policing. They see themselves as ‘heroes’ fighting against ‘wrongdoers’, who can be pretty much anyone else. (But especially black and brown people, I believe.) The result, of course, is that police themselves have now become an enemy to many.

This ethos is so pervasive, it’s even in fiction. Watch any cop TV show or movie, read any detective novel, a cop will lie or beat up someone at some point. Or the heroes-against-the-world thing will pop up. ‘It’s hard being a cop, no-one else understands’. Etc, etc, etc. And bear in mind that these shows are usually sympathetic to the police. Yet even there, the corruption has become the almost-unremarked-upon norm. (And before anyone says it, yes, I can tell fiction from fact. My point is that it’s so widespread in fact, it’s permeated into fiction.)

A note here – I went on my fair share of protests and demonstrations, back in the day. I’ve seen cops insult or verbally abuse people, threaten violence, commit it, do various dirty tricks, and even lie in court. There was a time in my life when if I saw a cop in the street I’d want to vomit and run away. So even though I’m whiter-than-white, I’m not surprised at all the videos that have emerged in recent years, though I am angry. I back BLM two hundred percent.

However – though I’m not wanting to divert the spotlight away from the Black Lives Matter movement at all – that is NOT my intention here – it’s worth noting that there is a deeper problem, an underlying pattern, which is not limited to the interaction of cops with black and brown people.

I was reminded of this recently when watching a documentary on Harvey Weinstein, and how he preyed on women for years. And he’s only one of the many, many authority figures – religious leaders, politicians, sports coaches, psychotherapists, entertainment top-dogs, etc, etc, who have long targeted the young and vulnerable of both sexes. And then there’s the abuse or even murder of autistics and disabled, by those who are supposed to be caring for them. Or the (mis)treatment of psychiatric patients, or the homeless… the list goes on. Practically anyone ‘different’ or ‘powerless’ can be, and frequently has been, a target.

In all these cases, those doing this harm do it because they can.

Because they’ve gotten away with it over and over again, for years, decades, even centuries.

Because they were in a position of unquestioned, unassailable, and unchallenged authority.

Because their victims were perceived as ‘lesser than’, ‘defective’, and/or just plain unimportant, not even worthy of life in some cases.

Because those who could have stopped them did nothing, in fact chances were they’d done it themselves, and thus it was ‘business as usual’.

Because even if their transgressions came to light, and complaints were made, the word of the powerful was always taken over the complainants.

Because even if a complaint was upheld, the transgressions were seen as minor/unimportant, or their actions were ‘justifiable use of power’.  

Because their victims were silenced in various ways – through threats, coercion, money, or just being ignored or ridiculed.

So it was okay for cops to beat up or kill black people, or for them to harass or beat up homeless people and destroy or take their belongings (and heaven help those who are black and homeless), for entertainment moguls to put aspiring actresses through the ‘casting couch’ ordeal, for priests to molest children and then simply be moved on to another parish, for professionals to put autistics through various torturous processes to make them ‘normal’. And so on, and so on.

Because the victims weren’t, and often still aren’t, considered important. They’re ‘the other’, the ‘different’, the ‘lesser than’, not worthy of the same rights as ‘normal people’, and thus it doesn’t matter what happens to them. And in the case of some groups, such as black people and autistics (once again, heaven help those who are both these things), even a ‘threat’ of some kind which has to be obliterated. So that others of their ilk can be kept in line. Subservient. Uncomplaining. Knuckling under to the Powers That Be.


This is an important point to remember. Because they can, and have, gotten away with it for a long, long, long time. This corruption isn’t only in the police, but at the core of every imbalance of power. It’s a sickness at the heart of a world where those with power simply assume they have the right to not only define ‘the other’, but to shape and control their very lives. Up to and including whether they even get to live or not.

But at a certain point, the oppressed have had enough. They see that nothing but their rebellion will stop it. And so they say ‘no more!’ Black Lives Matter says no more. The ‘Me Too’ movement says no more. Autistic Rights says no more. Social movements since the 50s and 60s – civil rights, feminism, gay liberation – say no more.

And that’s the whole point of these protests – that black people, along with their allies, have had more than enough. They’re saying that it’s way beyond time to make the oppressors get their foot, or their knee, off black necks. Literally and metaphorically. To end this sickness, and root out this corruption.

If you still don’t understand this, if you’re still into ‘all lives matter’, or going ‘well they shouldn’t riot’, then you have missed the point entirely, and you’re going to end up on the wrong side of history.