Tuesday, 9 October 2018

Things I Don't Understand - Number Eleven - Change

I don’t understand change.

Don’t get me wrong here. Change as a means of improvement, I’m fine with. Without it, we wouldn’t have things like safer cars, improved rights for minorities, better health care, and the Internet. And yes, it does bring undesirable things too, but I can understand the roots of those, even if I don’t like them much.

I can also understand change as variety, something to spice up life, because every day being the same can be totally, mind-numbingly, boring. I can cope with this kind of change, as long as it doesn’t happen too much, too often, and I can go back to my ‘normal’ afterwards.

But change simply for change’s sake, that’s the one I don’t understand.

Take for instance when supermarkets switch items round in their aisles, so that what was once in Aisle Seven, is now who knows where, because for sure you don’t. Or when manufacturers change the packaging of their products, so you can’t even recognise them. Or worst of all, they actually stop making your favourite of some product, for no reason at all that you can figure out.

Then there are things like the fashion industry, which constantly changes its ‘look’, so that even if you do find a style that fits and you look not-too-bad in, next year it’ll be gone, and something uncomfortable and unflattering will take its place. Not to mention that they use crappy fabrics, and charge outrageous prices, and that some of their designs would make you a laughing stock if you actually wore them in the street. And don’t get me even started on POCKETS. We’re conned into thinking this absurdity is good, people make movies, TV programs and even write books about it, it’s become normalised, and largely unquestioned.

A lot of it seems to be about money – if this product isn’t making them a squillion of profits, they toss it and make something else. Never mind if lots of people are quite happy with the existing one. Or supermarkets, department stores, etc, will rearrange their floors because they want to put more ‘high-value’ (ie, more profitable) stuff where people will see it and impulse buy. And fashion, of course, is definitely about money, especially at women’s expense, as we’re the ones being the most badly conned (or forced, for lack of alternatives) into buying their products.  The ethos seems to be ‘make people buy more, make more money, make more money, make more money...’ We’re all in thrall to the Great God Profit.

Politicians seem fond of this kind of change too. Maybe they just like to be seen to be ‘doing something’, even if it’s endless tinkering what should be left alone. We in New Zealand have seen a fair bit of this over the past few decades, especially in regards to things like our health and education systems. Politicians wanted to ‘leave their stamp’ on the country, and they have, not always to good effect.

My feeling is always, why can’t people leave well enough alone? If something ain’t broke, don’t fix it, is my philosophy. This constant change-for-change’s-sake seems to be very much a modern thing, a function of late-stage capitalism perhaps. We now have ‘planned obsolescence’ rather than quality, ‘trends’ rather than a search for perfection, ‘the latest gadget’ rather than the best tool for the job. Change has stopped being about improvement or variety, and become an end in itself, an out-of-control spiral, meant only to further enrich those who have way too much already. This is a big part of what makes the world seem to get crazier every year.

Political analysis aside, I’m sure many NTs feel bugged by much of the above too. But the autistic reaction to this sort of change goes beyond irritation. It can mean very real distress. The world to us is a chaotic place, and we rely on a lot of little things to provide anchors or islands of calm in the swirling mess. If the tinned tomatoes aren’t in Aisle Seven, if our favourite shampoo is discontinued, if we can’t find clothes we like, it feels like the bottom has dropped out of our world. Our anchors are gone, and we’re drifting out to sea in a storm. Our little islands have disappeared, and we’re free-falling into the abyss.

When this happens, our thinking can spiral into what I call catastrophising, where one little thing triggers a chain of thoughts that invariably end in a disaster scenario. No tinned tomatoes – we can’t eat tonight, we’ll go hungry, we’ll starve, be found dead on our kitchen floor. No shampoo – we’ll have to use something that induces sensory overload and meltdowns, or we’ll never be able to wash our hair again, will end up dirty and smelly, lose our jobs, become homeless... No new clothes – we’ll end up dressed in rags or butt-naked, unable to set foot outside our front door, our lives falling apart… You get the picture. Sometimes, we’re able to find a solution, or others help us find one, but we go through the emotional wringer on the way to it.

I’m not saying that the world has to be organised around us. I am saying that other people need to understand that if we get upset about some ‘little thing’ having changed, we’re not ‘making a fuss about nothing’. It’s very real, and very horrible. This world is hard enough for autistics. Please, don’t make it worse.

So yeah, I don’t understand change for change’s sake. And I think I’m not alone.

Tuesday, 5 June 2018

Borderline Personality Disorder And Autistics

Lately I seem to be seeing lots of mentions of borderline personality disorder and autistics via social media. One article I saw asks if we are being misdiagnosed with borderline instead of autism, other times people have mentioned how we are so often victims of ‘manipulators and abusers’, categories borderline people fall into. And, of course, there are genuinely some who are indeed both.

I do believe that autistics might be at higher risk of being borderline, because of the way we’ve so often been badly treated. But we’re at even greater risk of being the victims of borderliners, as I call them, including those who are both autistic and borderline.

Briefly, borderline personality disorder is now defined as “impairments in personality (self and interpersonal) functioning and the presence of pathological personality traits.” There are several criteria that must be met for a diagnosis. I must stress here that we’re not talking here about isolated incidents, but a consistent pattern of behaviour, over many years or possibly decades.

A couple of disclaimers here – firstly, before anyone points it out, I’m well aware that I’m not a psychologist or psychiatrist or anything like that. I have no professional knowledge in this area at all. But if something walks like a duck, looks like a duck, and quacks like a duck, excuse me, but I’ll call it a duck.

Secondly, this is NOT intended as some kind of attack on those with mental health issues. There seems to be some discussion as to whether personality disorders actually count as ‘mental illness’, though they are now generally defined as such. A crucial difference, however, between personality disorders and other mental illnesses is that you’re usually aware that you’re depressed, suicidal, etc. People with personality disorders, by comparison, often won’t acknowledge what they are. This is a big part of what makes them so damaging to others.

But what I am concerned with here is how often we are their target. (I’ve focused here on borderliners, but I don’t doubt that much of what I say applies to other personality disorders too.) When I researched them, my initial search only turned up websites that talked of borderline as a condition of ‘emotional instability’ and seemed to ooze with sympathy for the ‘sufferers’ of it. There was little or no mention of what it was like for those around them. It wasn’t till I typed in ‘I have been a victim of someone with borderline personality disorder’ that I discovered all their many, many other victims.

Because yes, I have suffered at the hands of borderliners, and I have seen family and friends suffer too. I didn’t have a name for their behaviour back then, but they’ve been in my life on and off for decades. The label is fairly recent, the type is not. Even the book that’s my ‘creativity bible’, The Artist’s Way by Julia Cameron, published in the 90s, talks of what she calls ‘crazy-makers’, and the characteristics are basically those of borderliners.

So, I’ve put together a list of common characteristics of borderliners so we can recognise them, preferably before they irreparably harm us.

1) Everything Is About Them. They have to be the centre of attention, at all costs. They will create (melo)dramas, sulk, throw tantrums, argue or rant for hours or even days, whatever it takes to make sure your focus is on them. They will also consistently invade your boundaries and your privacy. It didn’t matter what I was trying to do, my (now ex!) partner just had to talk to me, even when I was writing and made it very clear that I didn’t want to be interrupted. In fact, any time my attention strayed from her, she became almost frantic to get it back. This is often coupled with isolating you from family and former friends, so that you lose perspective on what’s happening. 

Borderliners can also be very controlling. My ex once threw a huge hissy fit because, in the middle of a ‘discussion’ (ie lecture from her), I got up and went to the toilet without asking her ‘permission’. How dare I “just get up and walk away!” Around a borderliner, your life no longer feels like your own.

2) They Are Never To Blame. The only time they don’t want attention, is when it comes to accepting blame. Their standard tactics are to deny and minimise. After I fell out with one borderliner, for instance, she tried to tell a friend that I’d ‘just misunderstood one little incident’, when in fact there’d been months of increasingly objectionable behaviour on her part. They will also deny there is any repetition of their behaviour - “let’s just talk about this one thing”, my ex would always say, when I tried to point out any patterns.

 Another tactic is ‘reframing’. If something negative did happen, it’s always someone else’s fault. On the rare occasion my ex would admit there was anything ‘wrong’ with her behaviour, she’d insist that it was an ‘only natural’ reaction to how *I* behaved, that I ‘drove’ her to it. For years, I tried very, very hard to be ‘better’, so she in turn would be nice to me. Only when I realised that my behaviour was not the trigger, was I able to break free.

3) They Have Almost No Self-Awareness. A borderliner, for instance, will say things like “I’m a very calm person”, when they’ve just spent hours screaming at you, or claim “I’m not _____ anymore”, when it’s obvious to everyone around them that they still very much are. They also have (or pretend to have?) almost zero awareness of the effect of their actions on others. This is part of the blaming others of course, but it’s more than that. I’ve had a borderliner tell me, with great concern, how it used to ‘really upset’ her when her ex used to self-harm, not realising that this same ex had told me how they only self-harmed after the borderliner had convinced them that they were worthless. It was as if they can’t comprehend any connection between how they behave, and how other people react to them.

4) They will use others against you. This is particularly so if you’ve put yourself out of their reach somehow. Remember that borderliners are experts at manipulation. There’s a phenomenon called ‘flying monkeys’ where borderliners recruit others to continue their abuse of you, having convinced them that YOU are the ‘baddie’. You may even have been one yourself, when you were with them. And while they rarely seem to commit physical violence themselves, I have seen one incite someone to commit it on a third party – after several attempts to destroy that party’s personal and professional reputation.

5) They see all this as normal. Whatever made them borderline happened so young, and so thoroughly, that they seem unable to understand just how screwed up they are. I suppose this makes them objects of pity, but the way I see it, it’s like seeing an unhappy-looking lion in its cage at the zoo. You may feel sorry for it, but it’s not a good idea to jump into the cage and pat it on the head - ‘there, there, poor kitty!’ Borderliners are like the lion – feel sorry for them perhaps, but at a safe distance, or they will rip you to shreds. They can be helped, yes, but not by just anyone. It takes truly major therapy - and first they must admit they need it. Wherein lies the Big Problem – they generally don’t and won’t.

If all this sounds horrendous, believe me, it is. Victims can take years to win free, and more years to heal, if we ever do. After more than twenty years, I’m not sure I’ve quite managed yet to ‘un-program’ myself from the messages my ex implanted in my psyche. And it still didn’t stop me from being the victim of other borderliners. Thankfully, I recognised the patterns quicker, and was able to get out faster and limit the damage.

You’ll notice I’ve said ‘she’ when talking about the borderliners I’ve known. This is because all the ones I’ve known have been female. Typically, about 70% of those diagnosed borderline are women, but this may simply reflect society’s expectation of how men and women ‘naturally’ behave, as more recent research finds the same rates of borderline among men and women in the general population, though the ways it manifests may differ somewhat.

Similarly, I am aware that borderliners are not all the same. Some seem more aggressive than others, some treat badly only those closest while seeming ‘lovely’ to everyone else, while others display the same behaviour to all. Some even seem to have moments of remorse and acknowledging their behaviour (my ex would sometimes do this), but the big problem with this is you can’t trust them to stay that way. What they say today, they will ‘forget’ and deny tomorrow. It’s how they’re built.

There is much more I could say about borderliners, but I think this post is long enough! My basic message is - be wary. Be very wary. And when you recognise one, run a mile. And then another, and another. For your own sake, and the sake of those closest to you. Stay safe, people.

Saturday, 19 May 2018

I'm So Tired Of Martyr Mommies

I’m tired of martyr mommies.

This year’s ‘Autism Awareness Month’ seems to have brought out even more of the breed, proliferating like rabbits on the Internet. Not that I go looking for them, you understand – I don’t need to, they pop up on Facebook with depressing regularity, and I see them because autistics or our non-autistic allies are up in arms about their latest communications, and rightly so.

Martyr Mommies are often of course ‘Warrior Moms’ on bad days. Warrior Moms (and sometimes Dads) are also everywhere on the Net. They’re the ones who sound like a cross between the worst autism-hating organisations and their own personal cheerleading squad for their kids. They’re all gung ho, rah-rah-rah, I love my kid to bits (but not their autism!), they’re my hero/darling/champion (but only of course for as long as they’re trying hard not to be or look autistic), my kid ‘loves’ their ABA (even when their own accounts suggest different), everything’s all hunky-dory (even when it’s obviously not), we’re ‘fighting the good fight’ every hour of the day (translation: poor kid never gets a break from ‘therapy’) and by gosh darn we’re winning! (Translation: we’ve managed to squash our kid into the non-autistic shape we want, no matter the cost to them.) 

But then they have a bad day, things don’t go according to The Big Plan, and so they jump on the Net again, woe is me, my kid has the autismz, they make my life so hard, the world hates me, it’s not fair, I ‘deserve’ a normal kid, etc, etc, etc… Completely self-pitying rants, all too obviously designed to gather sympathy and pats on the back. And they get them. In droves. People (few if any actually autistic of course) rush to tell them how ‘brave’ they are, how wonderful, how they totally support their efforts to squeeze the Big Bad Autism out of their precious darlings, and so on.

Three points about these communications strike me. Firstly, that they, or their supporters, often claim that they are ‘bravely telling it like it is’ about autism, as if what they’re saying is so rare. But – it isn’t. It really isn’t. These ‘brave’ messages from ‘Autism Land’ are everywhere, especially in Autism Awareness Month, perpetuating the worst kind of images about autism, and overriding what actual autistics are trying to tell the world. They get the attention, and we get drowned out.

Secondly, whenever autistics find these blogs, Facebook posts, videos, whatever, and protest the ideas in them, we almost always get an extremely negative reaction, from them and/or their supporters. It seems you’re either one of their sycophantic cheerleaders, or one of the Enemy. We’re called ‘haters’ and ‘horrible people’ and accused of ‘trying to make autism parents’ lives harder’, when in actuality we are trying to help, or at least trying to help their kid.

Which brings me to the third point – that their messages are always All About Me. My pain, my troubles, my hardship, me, me, me. Nothing about their kid, and what they’re suffering, and certainly there seems to be no consciousness that they might actually be making their child’s life worse. I sometimes wonder if they even register that their kid has feelings, or if they’re swallowed the autism-negative line that we don’t have any.

Don’t get me wrong - I get that it’s not easy. I get that parents of autistic kids get stares and hostility and stupid comments from the public. I get that it can be awful when your kid has a meltdown in the supermarket and you don’t know what to do, or that you spend a lot of your time making their food right, cleaning faeces off walls and floors, or trying to stop them eloping over the nearest wall. I also get that there’s not enough or the wrong kind of ‘help’ from the Powers That Be. I get that.

But – and here’s the thing – everything the parents find hard, IT’S TEN TIMES HARDER FOR THE KIDS. Because yes, even as kids, even if it doesn’t seem like it, we too are aware of the nasty looks and words, the hostility, the pity and the patronisation, the ‘autism as disease’ and other relentlessly negative messages about autism, how we’re a ‘burden’ on everyone, and so on. We understand far more than you think – even when we are non-verbal and written off as ‘too lacking in intelligence’ to understand anything. 

Add in to that our sensory struggles, our social difficulties, our straining to make sense of a world that just doesn’t, our frequent shame and embarrassment after a meltdown, our feeling of being ‘square pegs in a round-holed world’ which only grows stronger as we get older and more aware of others, our struggles with co-occurring conditions like executive dysfunction or alexithymia or anxiety disorders – and sometimes, of course, not even knowing that there is a name for these difficulties… Even if it doesn’t seem like it, we’re drowning in problems far worse than cleaning a bit of faecal matter off a wall.

But even that’s not the main point that always comes to mind when I think of martyr mommies.
My main point is this – that most of their pain is self-inflicted. Why? Because it’s caused by their resisting their child’s autism, fighting it, bewailing it, trying to crush it and being inconsolable when they can’t. So much of their distress, if you read their accounts closely, isn’t caused by things like faecal smearing or meltdowns or escaping, but because their child behaves in an obviously autistic fashion

So they get extremely upset when, for instance, their child rocks or flaps, hides in their room when visitors arrive, doesn’t use oral speech, does talk but not in a ‘normal’ way, refuses to hug Grandma, insists on their food being ‘just so’, spends hours arranging the family bookshelf, or ‘prevents’ their parents from ‘enjoying’ family holidays or outings. No allowance is to be made for their child’s ‘bad’ behaviour, they must be ‘trained’ out of it, no matter the long-term consequences.

Sigh. These parents come from such a different place regarding autism, and are so entrenched in it, that I hardly know how to talk to them, when I read their posts. The worst of them seem, sadly, beyond reach. Whether ‘warrior’ or ‘martyr’ however, I always yearn to ask them “if you really love your kid so much, why are you trying to eradicate something that’s intrinsic to their very being? What does it matter that they line up toys, touch their food ritually before eating it, or flap their way round the supermarket? Is this really such an awful thing?” It seems in their eyes, that it is. And that’s the root cause of their stress - not the autism itself, but that they can’t accept their kids as they really are. 

Many other parents of autistic kids, while sometimes having traumatic experiences, and almost as frequent struggles with getting services, don’t seem anywhere near as stressed out as martyr and warrior parents. They certainly don’t seem to spend their days angsting over the mere fact of their kids being autistic, regardless of their actual behaviour. They simply accept their kid’s autism as a fact, something to be worked with rather than against, and go from there. Sometimes on the spectrum themselves, sometimes not, they are our allies or potential allies, and I salute them. If more parents of autistic kids were like our allies, the world would undoubtedly be a much better place for autistics, or at least more people would be working to make it so.

Unfortunately, the warrior and martyr parents are not. And that is the real ‘tragedy’ of autism in their families.