Recently, Altogether Autism, an autism organisation here in New Zealand, asked to interview me, as one of their autistic voices for Autism Acceptance Month.
Here's the result (you may have to copy and paste to get the link to work. )
https://youtu.be/iogV8ogNuHg
There are two Big Mistakes that people make when interacting with autistics. Firstly, they presume we’re the same as everyone else. Secondly, they assume we’re NOT the same as everyone else.
If this sounds contradictory, let me elaborate on what I mean.
1) If people presume we’re the same as everyone else (this applies whether we have a diagnosis or not), it means that our actions are judged in that light. So if we do X behaviour, it’s presumed it’s done for the same reason that non-autistics would do it for.
The classic example is the autistic child whose teacher makes a mistake, and the child points this out – loudly, and in front of the rest of the class. The teacher reacts angrily, assuming that this is because the child is being deliberately cheeky, disrespectful, rude, or challenging their authority. The child, however, is far more likely to be simply distressed and/or confused by the teacher making a mistake, because errors can cause us actual pain. And as we’re less sensitive to social hierarchies, the student will likely just blurt out the correction. They will then be even more distressed by the teacher’s response, and possibly have a meltdown, especially if they’ve already had a hard day.
Even as an adult, working as a teacher aide in a classroom, I found myself in this situation. A teacher taught a grammar rule wrong, and it took all my self-control not to correct them. And if it was hard for me, imagine how hard it is for autistic kids not to say anything. A better outcome might be the teacher taking the child aside later, and asking them to tell them in private when they’ve made a mistake, rather than blurting it out in front of everyone. If the child knows that the teacher is sympathetic, they might be able to restrain themselves better.
Another scenario, which I’ve heard frequently from autistic adults, is an autistic employee asking an employer, manager or co-worker lots of questions about how to do a job. They then think we are challenging their authority, ‘acting stupid’ to bug them, and so on. Cue hostile response, and sometimes our being fired, demoted, punished or socially isolated. But we often do need way more guidance than most NTs would need, either because of anxiety issues or because we simply don’t know many things neurotypicals take for granted. In this situation, the probable best thing for the employer to do is to appoint someone helpful to act as a mentor, at least until we get the hang of the job, which we will probably then understand better than the other employees! If the job changes in any way, however, we will probably need further guidance.
2) People can also assume we are ‘not like others’, believing that everything an autistic does is BECAUSE they’re autistic. Implicit in this, and the tragedy at the core of this assumption, is the mistaken belief that we ‘don’t feel things like other people do’.
The classic example here is meltdowns. If it’s simply assumed that it’s a ‘symptom’ of our autism, ie that autistics are violent, disruptive, crying helplessly etc because we’re autistic, and for no other reason, then no-one will bother to dig deeper for the real causes. And thus we will likely have more meltdowns, and the destructive cycle will continue, until eventually we are deemed ‘intractable’ or ‘unreachable’, with all the horrible things that tend to follow on from that.
Whereas if people stop and think ‘well, if a non-autistic person was doing this behaviour, what reasons might they have?’, then they might occur to them that ‘oh! A non-autistic would be doing it because of stress!’ And then they might recognise that actually, we too are responding to various stresses. They might even start to realise the role that sensory overload plays in causing meltdowns. And they might start to change the classroom, office space, home environment, etc, as well as their (and others’) behaviour towards the autistic.
Because we do have feelings and emotions, oh how we do. We may not show them in the same way, or at the ‘right’ time, and sometimes we don’t even register them ourselves until later, if at all, because many of us are alexithymic as well as being autistic. But we do have them nonetheless. And to assume we don’t is to create a situation where our very real distress is ignored or, worse, punished. I can’t begin to describe the depths of the trauma all this causes. Because if it’s assumed that someone doesn’t have feelings, then it’s far more likely that they will be mistreated, abused, even sometimes killed, because it ‘doesn’t matter’ what happens to them.
The upshot of these two Big Mistakes is that in the first instance, the autistic is punished for being a ‘bad’ human. And in the second, we’re considered to not be human at all – and punished for that too, with the support we need denied us. Either way, our reality is denied, ignored or twisted and used against us. Both cause massive amounts of distress, confusion and pain to autistics. We end up feeling like no-one likes us, no-one understands us and no-one truly cares. We can become perpetually anxious, depressed, angry, or even suicidal – if the world is that unfriendly, why would we want to stay in it? Even if we don’t end it all, our lives tend to go on a downward spiral. It’s a harsh world for autistics in which these two mistakes rule people’s attitudes and behaviour towards us.
The curious thing is that, often, people make the same mistakes with the same autistic individual/s, at the same time. Our meltdowns, for instance, can be seen as ‘bad behaviour’, but also simultaneously as ‘well you know, they’re autistic…’, with a dismissive shrug. All the while, our real problems aren’t being looked at, and will sadly continue.
Sometimes these two mistakes combine in a particularly nasty way. In this approach, we’re seen as ‘NTs with holes’, ie that we are like others, but with lacks or deficiencies, which need to be corrected, the ‘holes filled in’. I call this the ‘empty autism theory’. It’s assumed that if we have the right therapy, we will become ‘just like normal’. But the ‘no feelings’ assumption plays its part here too – when we react badly to that therapy, eg if it’s boring, harsh or manipulative, causes us pain or upset, or involves long hours that other kids aren’t subjected to, our very real reactions to it are ignored, because they ‘aren’t real’, or ‘don’t count’. ABA is the prime example of this, but things like social skills classes, forcing us to forsake our special interests or to make eye contact can also fall into this category.
None of these approaches are helpful. We are not what people think we are, but we are definitely human. It’s just that we human differently. We desperately need and want you to learn our true reality, not operate on these wrong assumptions about us. These Big Mistakes are hurting us, hurting us badly, and it needs to stop.
Why does the world seem to be going backwards?
Let me expand on this idea. I am a member of the post-war generation. In our childhood, Nazis were recent, and evil, history. Despite how some see ‘boomers’ now, as we grew up we saw ourselves as progressive, throwing off the ‘fuddy-duddy’ ideas of the ‘old days’. There was also an implicit belief in science, and we assumed that the world would continue to improve as a result of it. Many of us, as we got older, joined movements like feminism, civil rights, gay rights, anti-nuclear and so on. Conservative, reactionary forces were pushed back. Onward and upward from here on, we all assumed.
Over time, however, something happened. Maybe we got tired, or burnt-out, or moved on to new things. Or we just got old. And these movements ...changed. Their focus changed. A lot of the younger generation seemed to think that all the battles had been won anyway, or perhaps they were too busy just struggling to survive in the new neo-liberal economy (which, contrary to popular opinion, boomers neither invented nor put into place). We entered a new century. Society changed. The world changed.
Somehow, from somewhere, the reactionary forces have risen again. Religion, which once seemed a spent force, has surged back, gaining a new viciousness. The prejudiced, who’d seemed few and quiet for decades, have also surged back. In the US, right-wing Christians have taken control of the Republican Party, and are now trying to control the voting process and deny voting rights to minorities. Also in America, white supremacists have surged in numbers and power, infiltrating police forces. Even the Nazis have come back.
Around the world, there’s been a surge of new, egomaniacal leaders, from Trump to Putin to Bolsanaro, as well as of those willing to follow their lead or their example, who are openly and actively oppressing minorities (eg Russian gays, China’s Uighur people), or suppressing all opposition. Yes, there have been dictators in the past (think Hitler, Stalin, Idi Amin, Pinochet) but I guess we assumed that this kind of leader was a thing of the past, that the world was becoming more democratic.
As well as all this, there’s emerged, in a portion of the populace that even if small is still way, way too many, a level of mistrust of/hatred for government, media, scientists and doctors that is beyond reason, and a phenomenal growth in anti-vax sentiments, something that would have shocked and baffled previous generations, who eagerly embraced new vaccines as a public good.
So what happened?
Why does the world seem to be reverting to the philosophies of a former era, only with some deadly and vicious new twists?
When and how did it become okay to be a Nazi, to say ‘six million wasn’t enough’, and to have *actual* torchlit processions in the streets? When did it become okay again to be openly racist? And when and how did hippies, New Agers and other ‘leftie-ish’ types become allied with *actual* Nazis and white supremacists?
When did a subset of feminists turn into transphobic TERFS? How did they hijack feminism to mean actively working to suppress trans rights and freedoms? (Yes, back in the day these opinions were around, but rarely and only casually expressed, there wasn’t this vehemence, and they certainly weren’t organised.)
When did science and medicine lose their rep so badly that many not only don’t understand them, but consider them corrupt? When did it become okay to be an anti-vaxxer, and not get laughed out of the neighbourhood as dangerous or deluded? When did the tide of misinformation start? Is Wakefield totally to blame, or is there more to it?
When did expertise - in any field – become a thing to be derided and ignored in favour of ‘feels’ and ‘instincts’, or some crappy website/guru/New Age ‘therapy’? When did movie stars come to be seen as more ‘knowledgeable’ about science than actual scientists? When did the ludicrous idea that nature is always beneficial and ‘nice’ gain traction?
And when did simply using your common sense and objecting to any of this come to mean that you’re ‘sheeple’, or ‘shills’ for Big Pharma, and you get told to ‘wake up’ by those who obviously slept through science class?
When did ‘I want a haircut’ become of more importance to some than public safety? How did individual ‘rights’ come to always outweigh collective good? When did it become okay to storm or besiege your centres of government, just because you don’t like their decisions, or the result of a democratic vote?
When did it become okay to blame anything on a generation (usually boomers or millennials), rather than the real culprits, that obscenely wealthy one percent who are steadily draining the rest of us and screwing up the environment?
When did it become necessary, in the eyes of the media, to present the arguments of anti-vaxxers and other science-illiterates as a ‘legitimate viewpoint’, and interviewing them as presenting journalistic ‘balance’?
When did we go from an understanding that some politicians are corrupt, sometimes, to the belief among some that all politicians are corrupt all of the time, everywhere, and that the media are nothing more than their lackeys? When did these people start to close their ears?
When did the world, or at least a substantial part of it, lose its common sense? When did so much of what my generation fought for start falling apart? What happened to moderation? When did the (supposedly ‘civilised’) world become so damn uncivil? When did the world start going backwards?
What the heck happened? How have so many people lost the plot, so badly?
And what’s worse, is that it’s so blatantly obvious that a lot of these people just don’t care what harm they do. Dictators are becoming increasingly blatant. Putin smirks at the rest of the world’s objection to his egomaniacal invasion of the Ukraine. China threatens Taiwan. Trump openly lied, bragged and sneered. Anti-vaxxers baldly state that they don’t care about the illness and deaths they are responsible for. TERFs will post screenshots of trans people’s pain and outrage as ‘evidence’ of their ‘attacking’ ‘real’ women. Right-wingers blatantly work to undermine the ‘democracy’ they claim to prize. Reactionary forces, in general, do not care about the pain and misery they inflict. They would pull apart all we’ve gained, if they could, and replace it with far worse than anything we had before. And not blink at who gets hurt.
They. Just. Don’t. Care.
And yes, I realise that many of these attitudes had to have been only deeply buried, not totally eradicated. That we were probably kidding ourselves that humanity had turned a corner. And yes, I am deeply distressed and enraged by recent events, especially Ukraine. And YES, I know that my feelings and observations are very subjective. And I know also that there are still sensible voices and rational people in abundance, and that there has been, and continues to be, genuine progress in many areas.
And yet there are some undeniable trends.
Trends indicative of a deep distortion and malaise in our collective psyche. Something, somewhere, has become unhinged. The world all too often feels like one gigantic scream. And I don’t think this is ‘just a phase’ either, and that we will swing back again any time soon. Something has come apart, and I don’t think it’s going to come back together. We won’t come back together. Deep rifts have formed in society, over which there seems to be no crossing.
And as someone whose sexuality, gender identity, neurology, political views, degree of outspokenness and level of physical disability fall outside what’s considered acceptable by these reactionary forces, my personal safety feels under threat. This is not rhetorical or theoretical. Even in my comparatively ‘safe’ country, there have been anti-vax and anti-mandate protests, with violence and mayhem, and public figures coming out in support of them. I have heard people, in my own town, loudly claiming that vaccines contain microchips. The local paper frequently publishes letters from anti-vaxxers (and their opponents, to be fair, but once upon a time editors would have just tossed AV letters in the bin). There are anti-vaxxers even in my own street. And while New Zealand is not as religion-minded as some countries, nonetheless there’s a right-wing religious element which I keep a wary eye on.
I no longer feel safe where I am, and want to move, but I’m wondering if anywhere is truly safe anymore. I fear for the future, and part of me is glad I’m old, that I won’t live to see the outcome of all this. I don’t know where we go from here. I don’t know where there is to go from here, what we can hope for, what we can do, on an individual or collective level. It all too often seems like the progressive forces are on the back foot. Please tell me I’m wrong. Give me hope, because right now I don’t have any.
I’ve been thinking a lot about Executive Function Disorder. It’s mentioned frequently in the list of autistic co-occurring conditions, yet no-one really talks about it all that much. But it’s nonetheless one of the biggest problems for many of us.
Executive Function disorder (EFD for short) happens when there are differences in the chemicals in the brain which affect the frontal lobes, leading to problems with things like organisation, concentration, time and task management, prioritising attention, problem-solving, short-term memory, multi-tasking, impulsiveness and emotional regulation. It’s frequently linked to ADHD and autism, where we’re born with it, but it can also occur as the result of injury or illness which affects the same parts of the brain, eg stroke or Alzheimer’s.
This is me.
EFD is something I struggle with. Every. Single. Day. I work hard, every day - and I do mean hard - on Getting Things Done. My days are a constant wrenching process of me telling myself to do things, setting up reminders to do things, nudging, pushing and prodding myself to do things, even yelling at myself (usually silently, but yelling just the same) to do things. I make all kinds of prompts for myself – LOTS AND LOTS of lists, timers, alarms, notes in prominent places, scenarios in my head, etc, etc, etc - in my attempts to keep myself, my day, my house, my belongings, indeed my entire life, on track.
On good days, I’m moderately successful, complete at least some tasks, and feel reasonably okay about myself. I can give myself a pat on the back, and a breather at the end of the day. I feel like I’ve achieved something. Been something, or somebody. I’m okay. Sometimes I even have several good days in a row, and in the past, I would fool myself that I’d ‘changed’, ‘sorted myself out’, gotten rid of my ‘demons’. I was gonna be ‘all right now’. Not anymore.
Because, inevitably, come the bad days. The failure days. The days where I get out of bed only when something aches, or my body’s needs drive me. When I shower only when I can’t stand my stink anymore. When I eat only when my blood sugar plummets or I feel sick from not eating. When I feel stuck on the couch, looking at all the things that aren’t done, but somehow unable to get up, instead playing games on my phone, reading or just blobbing in front of the TV, or getting obsessed and spending hours online researching something. These are also the days when I tend to make it to appointments by the skin of my teeth, or go grocery shopping so late that half the perishables are gone, and all the sale bargains.
Often a reaction will set in, usually in the late afternoon or evening, when I become so angry and disgusted with myself and/or the state of my house that I rush around in a fury, trying to do as many tasks as possible, running my butt off till I collapse in exhaustion. But even once I do start a task, it’s all too easy to get side-tracked. I can end up with several jobs started, none finished, too tired to complete any, and feeling worse about myself than I did before. Some days, I even end up having a meltdown, or literally bursting out of the house for a walk, so that I can feel I’ve ‘done something’ with my day.
And of course I have to battle with myself to get any creative work done (even this blog post, which has been on the back burner for literally months), no matter how much I love doing it, no matter how much I *want* to do it, until the sheer pressure of both self-disgust and the images and words themselves force me into doing SOMETHING.
I could go on and on – there’s the whole thing, for example, of how once I set up a list, I won’t want to do anything on it, or how I’ve only achieved some measure of emotional regulation in the later stages of my life, or my always-irregular sleep patterns - but you get the picture, I’m sure.
I’m a mess.
There are basically only four things that can propel me into action.
Firstly, dire physical need, like an achingly full bladder, extreme hunger or thirst, or being so tired I fall asleep on the couch.
Secondly, external impetus, eg a doctor’s appointment, occasions I need/want to attend, or needing to return books to the library before I gather fines. (And there’s usually A LOT of stress involved in all of these, as I check and double-check and triple-check EVERYTHING.)
Thirdly, my own disgust/anger/impatience with myself, as above.
And fourth, the urge to be creative, which has often been my saving grace, but which needs to surge up pretty strongly to overcome my natural inertia. Hence the weeks of creative inaction that are sadly all too common.
And that’s it. There is no ‘natural’ way of getting myself moving. No natural connections in the brain that enable me to ‘just do things’. I have to force myself, or be forced by external circumstances/demands. There is no other way.
It doesn’t help that my Chronic Fatigue Syndrome means I can’t keep on going once I start, I need frequent rests, but once I do stop, getting going again is, well, not easy. Ageing and related ailments also don’t help. I get more and more reluctant to start tasks that I know are going to be extra difficult. And of course, any change, any disruption or extra stress, just makes everything worse. I moved house last year, and to get back to even a degree of good habits has required an added effort.
I have improved over the years, and made progress in developing a more ‘organic’ way of responding to situations, as opposed to the harshness I used to punish myself with. But it’s still a struggle. Nothing ‘just happens’. I don’t know how other people just …get up and do stuff, going effortlessly and smoothly from one task to another. Why, I’ve always wondered, is it so easy for them, and so hard for me? I have absolutely NO – zero, zilch, nada, nix - natural impulses that keep me moving in this way, it’s an endless effort, and all too often, I still end up on the couch, telling myself to ‘get up now, get up now, NOW DAMMIT…’ Sigh.
In the old days, before I knew I am autistic, I never talked about any of this. I rarely mention it even now. It cuts too close to the bone, not surprisingly, as I’ve spent a lifetime feeling ashamed of ‘not being able to get myself together’, and going to great lengths to hide it. Some people have judged me ‘lazy’, ‘useless’ or ‘just not trying hard enough’, not realising how hard I’ve always had to work at keeping any order at all in my life. The worst part is that I believed it too, for too long, assuming I must be deficient or inferior for having to work so hard, and yet still not being able to be like other people.
And to be 100% honest, even now, it’s the one thing about my brain I would change, if I could. Other aspects of my autistic self, I’ve learnt to embrace or ameliorate, eg sensory issues. But this continues to be the biggest bugbear of my life, on a daily basis. So I will continue to wrestle with it, because, ya know, I want a life, I want to achieve things. Not to mention I don’t like living in filth.
But after 60+ years of trying, I’ve accepted that I can only manage it, not get rid of it, and I’m tired of living in shame, tired of hiding my ‘bad habits’, simply because my brain is different. This is how I’m built. On an online test for EFD, I scored 51 out of a possible 64. Not much I can do with that! I suspect that I would have scored even higher when I was younger.
But a frequent mantra of mine in recent times is ‘you are what you are. You can’t be other than what you are’. It applies to EVERYTHING that I am, including this. Learning about EFD, like learning about autism, has made all the difference to my self-esteem. I am what I am. I can be no other. I shouldn’t have to hide that true self.
And nor should any of you.
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.
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.
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?
