Saturday 28 August 2021

The World Is Broken, And It Breaks Us

Call me cynical, call me jaded, even call me broken. And you’d no doubt be right. I’m tired of the world, I admit. Sixty-some years of a not-particularly-easy life have worn me out. Yet more and more I can’t escape the conclusion that it’s not just me, that this world is a extremely messed-up place. It’s broken, and it breaks people. You only have to look around you to see this. The world is seriously imbalanced, and seriously unwell, so much so that I’m not sure I even have the words to describe this deep malaise.

The list of things that have been wrong with the world ‘forever’ is long - war, genocide, grinding oppressions, colonialism, corruption, power trips, the structural and person-to-person ‘isms’, abuse of so many kinds, mistreatment and neglect of children, rape and sexual exploitation, all kinds of interpersonal violence, systemic failures which result in trauma to individuals, violence towards animals or treating them as commodities only worthy of existence if they bring some benefit to humans, the destruction of the environment because the natural world is seen as ‘good’ only if it can be exploited… This list is not a comprehensive one by any means.

All of these things wreak havoc. People die, or their lives are ruined. Animals die, species become extinct, and landscapes disappear or are changed forever, usually for the worse. And this environmental damage, despite some seeming to believe that it’s all the fault of us baby boomers, is actually (at least) two hundred years’ worth of pigeons coming home to roost. We’ve ruined our planet, and now we’re living with the consequences.

Much of this is (surprise surprise) due to people’s egos running rampant, especially those of many so-called ‘leaders’ (pretty much all of them male, but then until recently women couldn’t be ‘leaders’). They gather around them cohorts of similar-minded or at least sycophantic followers who aid them in damaging everything and everyone they can, in service of that ego. We need look no further than a recent American president to see that, but he’s only the most recent, and loudest, example.

Amazingly, these ‘leaders’ will have many faithful followers. Even when they blatantly break their wild promises and prove themselves to be liars, bullies, blowhards, narcissists, and megalomaniacs of the worst kind, some people, incredibly, will still worship them. It defies rational belief, but it’s true. You have to wonder what’s wrong with the followers, that they remain so deluded, or why they would follow such a person in the first place.

There are also so many day-to-day ugly things that people do to each other - workplace politics, insults, name-calling and put-downs, vicious online fights, dysfunctional family dynamics, public rudeness, snobbery, manipulative mind-games, and on and on, all the ‘minor’ nastinesses. These take their toll too.

Even if people don’t actually die from any of these things, they can be left with emotional and physical scars, and all sorts of ongoing problems. All too often, people don’t receive the care or support they need - because, sadly, many of those in power don’t seem to view them as a priority (if you’re Not A Productive Citizen, you’re nobody in their eyes). The rates of mental health problems alone are an indicator of the state of the world. Depression, reported loneliness and isolation, anxiety disorders, PTSD, suicidal ideation, personality disorders, and other serious mental health issues seem to be increasingly common. Maybe they’re growing, maybe they have always been high, when so many have ‘flown under the radar’, and it used to be social death to have a mental health problem, and often still is, who can tell? But either way, it’s not an indication of a healthy world. (Though it sometimes seems to me that being so-called ‘insane’ is actually the only sane response to such a screwed-up world.)

And then of course there’s capitalism, which is much to blame for the state of the world. Its late-stage version encourages rampant greed, materialism, arrogance, cruelty, selfishness and the cult of individualism, with an elite increasingly hoarding obscene proportions of the world’s wealth, while the rest of us struggle and get poorer. Ironically, capitalism had its roots in breaking out of the oppressions of feudalism, and now it’s become an oppressive system itself. I sometimes wonder what those first ‘capitalists’ would think of the world today. Any student of history knows, however, that all political/economic systems have their drawbacks. And as much as I would love to see an end to capitalism, if we don’t address the core problem – that it’s a HUMAN-CREATED system, with all of its failings being due to the failings of human nature, then we’re doomed to create something that will turn out just as badly somewhere in the future.

And then of course we come to our present situation. You’d think a pandemic would be a time for people to pull together, and truly some have. But then there are the rest. The ‘all rights, no responsibility’ types who insist on their ‘free-dumb’, at any cost. The lockdown protestors who think their right to a haircut is more important than people’s lives. The anti-vaxxers who can’t see further than the end of their own ignorant noses. Science deniers and conspiracy theorists in general, who are irrationally convinced the ‘gubmint is out ta get them’. Flaunting their views on the toxic parts of social media, their ‘movements’ often strangely married to groups like fascists or flat-earthers. What is wrong with all these people? Did they leave their brains behind somewhere? The selfishness and foolishness of all of them blows my mind.

If everyone had knuckled down last year when Covid first appeared, it would almost certainly be all over by now. There would have been no Delta variant, and we really would have our lives back. New Zealand licked it, and we’ll hopefully do so again, even Delta. We’re not better than anyone else, just simply lucky enough to have good leadership. Some other countries’ leaders, however…. Well. There go those egos again, and rampant selfishness and greed (‘We must preserve the economy’ ie Big Business profits, including theirs), refusal to listen to scientific experts, blah blah blah. And too many following their lead.

All this is bad enough. There are glaring predicaments everywhere, damaged people and damaged systems and damaged countries, wherever you look. So much damage, so many walking wounded. The world is so chaotic, if it was a person I’d say it needed a personality transplant. As it is, I can’t help a sneaking sympathy for those who want to tear it all down and start again.

But there are so many ways in which autistics become extra-damaged by all of this. People take their anger, or pain, or egotism, or their craving for power, or simply their demand for something – anything - to fill up the emptiness within, and put it Out There. They will dump it onto whoever is nearest that looks like a possible target, and sometimes that’s us. Because we’re too obviously ‘different’, too ‘weird’, too ‘not like them’, we ‘behave too badly’, and are, all too often, too unprotected from anyone seeking to harm us.  

The world fails us. We find the world confusing and often overwhelming as it is. We’re often more sensitive to ‘bad vibes’, and don’t understand others’ bad behaviour. But add in all the crap we get from NTs as well, simply for the ‘crime’ of being autistic, and it’s no wonder we are especially traumatised by it all. I’ve said it before, and it’s been said by others too, that I don’t think there is an untraumatized autistic in the world, unless they are very young and/or very protected. The very shape of how autism is perceived by the world is shaped by our trauma. Yet there’s something deeply ironic about a world that demonises us when it can’t even properly face its own demons.

The only two things that give me any hope are, firstly, the number of good people in the world, trying to make it at least a little better, including so many of my friends. If more of them were in power, maybe the world wouldn’t be in such a mess. The second thing is young people. Their passion and energy, their concern for the environment, their determination, the way they have Big Goals but are also clear-headed about the shape of the world, lifts my spirits. I feel a little less gloomy about the future when I see them in action.

But otherwise, all I can see is that the world is broken, and it breaks us, even more than others. The world needs healing, and so do we.

Tell me I’m wrong. But I think I’m not.

Wednesday 28 July 2021

That So-called Stigma

I’ve been criticised for writing about borderliners before. Sometimes the criticism comes from the borderliners themselves, other times it’s from the well-meaning but ultimately misguided who are concerned about what they call the ‘stigma’ of having one.

The problem is that so much of the attitude of many towards borderliners (or those with other Cluster B conditions, for that matter) isn’t due to some vague ‘stigma’, but to them having a reputation. People have suffered at their hands, and learnt to be wary of them, and others have either witnessed this or heard their stories. But try and say so, as I sometimes have, and prepare for a ton of excrement to land on your shoulders. A frequent tactic is to say that you shouldn’t say that people with personality disorders are abusers, manipulators, etc. ‘Address the abuse, not the personality disorder, PDs are no more likely to abuse than anyone else, blah blah blah’, is their line. But this deserves a much closer look.

Borderliners (the PD I know best) typically have the following issues –

1) Fear of abandonment. Not so much an anxiety, as an outright terror. As a child, they may have experienced physical or emotional abandonment, or the threat of it, or the loss of a loved one. Or they were abused and manipulated into believing that they’re so ‘bad’, others will leave them. Whichever, they are ruled by this fear on a very deep level.

2) Poor boundaries. Invariably, their own boundaries were constantly violated as a child, and/or the setting of boundaries were never modelled for them. Thus they have no idea how to set their own, nor can they recognise or respect other people’s boundaries either.

3) Emotional volatility. Anger is the one that tends to come to the surface most, and I’ve sometimes been able to identify a possible borderliner by their frequent and explosive displays of anger. Sometimes this is buried under a layer of ‘niceness’, but dig deep enough, and it’s there. But other emotions will also likely be out of control. I believe that their fears are at the basis of this.

4) Warped attitudes. All the borderliners I’ve known have skewed viewpoints about other people, stemming, it seems, from a twisting of their infant psyches at such a young age that they don’t even realise that they’ve been warped. They seem to assume that ‘everyone’ is ‘like that’, or if they do realise that others aren’t, they try to excuse their behaviour in various ways, rather than confronting the underlying issue. It’s as if they’re too afraid to look at themselves.

So I ask you - what is the likelihood that people with poor boundaries, a terror of abandonment, anger management issues and skewed attitudes about others, have a high likelihood of becoming users, abusers and manipulators? I’d say pretty strong. These emotional states drive them to clutch at those close to them, try to control them, manipulate and dominate them, isolate them from others, and generally do anything to hang on to them. Emotional abuse or manipulation, rather than physical, seems to be predominant, but the latter is not unknown.

Of course, it can often mean that they’re likely to be victims of abuse etc themselves – I’ve seen this even in the same person. They might be petty tyrants in their own homes, but unable to assert limits outside it, or with a more domineering personality. And in theory, there could be borderliners who are not abusive, who have more self-awareness than most, and who work hard on not letting their insecurities and emotional problems spill over onto their loved ones. But – and here’s the kicker – I would not take their word for it, because another frequent problem with borderliners is their expertise with lying or twisting the truth. If this sounds harsh, well, I’ve been manipulated like this before, and paid the price for it. And it’s worth remembering that autistics are far more vulnerable to all kinds of abusers, including those with PDs, because of our naivety and difficulty with reading people’s intentions.

Here are just some examples of what I’ve personally seen –

1) A (probable) borderliner manipulate their partner into an emotional ‘divorce’ from their family, working them up to such a frenzy that they eventually physically attacked another family member.

2) This same person constantly spreading vicious lies and rumours about the partner’s various family members, attempting to damage their personal/professional reputations.

3) Another borderliner do a furious rant at me when I attempted to set boundaries, swearing at me, violating those boundaries again, and then, when I eventually blocked them, attempt to manipulate friends and persuade them that I had just ‘misunderstood’, or that I was ‘afraid’ of them, etc, etc.

4) Same person trying to get round the block by creating new accounts, and messaging me from them with a tirade of abuse and spurious claims, years afterwards.

5) Yet another, ranting at me because I was one of the admins for a group they’d been thrown out of for bad behaviour, even though I wasn’t the one who threw them out. Their attitude was that they were discriminated against for not being ‘eloquent’, with no admission of that behaviour. (How eloquent do you have to be to say ‘sorry, my bad’?) No matter what I said, they just got more and more furious, finally abruptly unfriending and blocking me. I heard afterwards that they were complaining about how ‘oppressed’ they were in that group, and how ‘horribly’ they’d been treated.

6) A borderliner spreading vicious lies about their ex to anyone who would listen, and making them feel so frightened that they moved out of their house for several weeks.

7) Another probable borderliner drive others they’d taken a dislike to, off a piece of land they co-owned with them, so that they didn’t return until the borderliner left permanently. Also visitors to the same land refused to come back while that person was there.

And this list is not even touching on my ex’s behaviours, or the damage she did to me.

Do I feel empathy for those with Borderline Personality Disorder? Most definitely yes. I have a huge amount of empathy for their suffering. They are deeply traumatised individuals, with some very Big Issues to deal with. PTSD is not an uncommon co-occurring condition, as are other mental health issues. And I do know that there’s a problem with public attitudes towards those with mental health issues in general. People with PDs do suffer deeply, I’ve seen this, close up, intimately.

The problem is, firstly, how often they make those around them suffer for it too, and secondly, how reluctant they are to both acknowledge this and to seek out the professional help they need. (Not to mention, of course, the issue of what help they can actually access.)  It’s this, way, way more than my personal history, that impels me to push back when people talk as though their only problem is this ‘stigma’, and that if people could just get past that, everything would be hunky-dory.

Now, theoretically, you could be friends or even partners with a borderliner, and not be their victim. But you will need a strong sense of self, and strong boundaries, which you must be prepared to repeatedly enforce, right from the very beginning (it’s no use trying to do it later, in my experience, they just get mad at you). Things to especially watch out for include criticisms of you which seem to ‘come out of left field’ and startle you because they don’t ‘feel right’, subtle manipulations of or ‘selectiveness’ with the truth, outright lies, attempts to isolate you from others, and criticism of others which somehow always cast themselves as the ‘innocent’ one, and others as ‘mysteriously’ being nasty to them. Don’t put up with it, be firm, and always check the truth with others.

Because they *will* test those boundaries, over and over and over, like the damaged child they are within. And as with a young child, the effort will probably pay off in the end, giving the borderliner in your life a sense of security that they never got when they were young. You will also help them by insisting that they search out the right kind of therapy. The hand-holding, cups-of-tea, patting-them-on-the-back kind of ‘help’ is not actually helpful at all for those with PDs, as it simply encourages them to believe that they’re the ‘wronged’ individual, and they will not find the incentive to change. It’s an individual choice though, whether you are willing to make that effort (and it will be A LOT of effort), and…. I’m not. I’m burnt out from past efforts in this direction, and I just don’t want to go there again. But, you know, your choice.

What is NOT helpful is denying the potential for abusive/manipulative behaviour, making excuses, or complaining about ‘stigma’. I‘ve been on the receiving end of their behaviour, yes, but I’ve also seen others be their victims, heard more stories of those who’ve been their victims, and read up on the disorders and their treatment. So it’s not just a matter of ‘oh, this one borderliner was abusive to me’. If it was, I’d shrug it off. It’s an entire PATTERN of behaviour on the part of MANY borderliners. (It’s worth noting that other Cluster B individuals also have behaviour patterns that are deeply damaging to others. It’s why they end up with diagnoses in the first place. Or did you think that this is ‘just prejudice’ on the part of mental health professionals?)

Yes, I have emotional reactions to the whole issue, and indeed to those with borderline PD themselves. I admit I am not objective or unbiased. After any encounter, with borderliners, or to some extent narcissists, I feel a mix of anger (how dare they do that to me or others), apprehension (not wanting contact in case I fall back into bad old patterns), and disgust (loathing of their tactics, and feeling like I’ve waded through a sewer).

But THIS DOES NOT MEAN THAT ANYTHING I SAY ABOUT THEM IS INVALID, especially when I see blatant fallacies being promoted. And yet I’ve had people suggest this. On one occasion, they even took my words and replaced ‘borderliners’ with ‘autistics’, and said ‘see how bad it sounds?’, as though autism and a deep psychological disorder can in any way be compared or equated. But it’s the attempted silencing that really makes me angry. Would they say that a rape victim has nothing worthy to say about rapists in general? Or that a victim of domestic abuse has nothing worth listening to about domestic abusers? Yet they attempted to dismiss what I said on these grounds.

Enough. Do people with personality disorders need understanding? Yes, most definitely. Should we gloss over their bad behaviour because of their traumatic history? No, also most definitely. Enough of the excuses, enough of the ‘stigma’ talk, enough of glossing over the very real issues of their behaviour. I’m not putting up with it anymore, and I refuse to be silenced again.



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.