On Being Comfortable In My Own Skin

Not many people know this, but I’ve kept journals on and off since my teen years. However I’ve recently realised that in all of them, I’ve been simply repeating the same thing in different ways – “I am what I am, this is me, I’m different, I’m different, and I cannot change.” And of course spilling out all the pain and trauma of trying to live in a world that just isn’t meant for people like me, not to mention the self-hatred, depression, shame, imposter syndrome, and sense of being ‘out of place’ that arose in turn out of that.

I tried tackling these issues through various routes over many years. I tried self-esteem and assertiveness training classes, peer support groups, various counsellors and psychologists, communication skills classes, meditation, self-help programs, and of course lots and LOTS of reading, but all to no avail. I still felt like the lowest of the low. My journal was often the only place I felt no-one would judge or condemn me for being ‘different’, the only place I felt I could be my true self.

But I’ve now reached a stage in my life where I have found that privately repeating the same old same old isn’t actually helping anymore, and instead my urge is to take what I know and feel out to the world at large. Journaling has transmuted into sharing with trusted friends in small groups or private chat, comments on various posts, or, most especially, the rough scrawling notes which I later compile into blog posts like this. It’s taken me a long time to get to this point, and there have been several pivotal steps along the way. The main ones have been -

1) Finding the autistic community. If I hadn’t found the autistic community (as opposed to the ‘autism community’), I would have gone on feeling like an error on the human production line, and that what I believed were my defects were something I had to hide for fear of rejection. I would probably have refused to even identify as autistic, because the official criteria for them just wouldn’t have seemed to fit. What, me, that terrible, almost sub-human creature they describe? No way.

But I did find it. And though I’m no longer rosy-spectacled about it, and will readily acknowledge that it’s far from perfect, nonetheless, it’s a damn sight better than nothing at all. Without it, I was lost in a social wilderness, stumbling and crashing my way through the world, feeling like a fool. But in our community I found for the first time people who thought, felt and acted like me, people who didn’t think I was weird or stupid or laughable. In fact some of them seemed to actually like me! Want to know me! This still sparks amazement, but also the warmth that only comes from having true friends for the first time in my life.

Even so, it’s taken over a decade of support and acceptance from my fellow autistics for this to truly sink in. For the damage of earlier years to be undone, and the messages of autistic pride and neurodiversity to seep down into the deepest layers of my subconscious. I think that even after I found the community, on some level I was still ashamed of being autistic, of being ‘different’. But over time, my attitude has been steadily transformed into “this is me, this is who I am, and if you don’t like it, feel free to go find someone whose company you like better!”

I do appreciate that not all of us have the freedom yet to do this, be like this. I hope that someday we all can. And nor am I going to claim that any of this is easy, or that I’ve magically learnt the secret of ‘loving myself’ that so many people have tried to tell me was so important. Rather, I’ve realised that you don’t need to ‘love yourself’ in order to reach a point where you stop and look at all the negativity that comes your way simply for being yourself, and think “you know what? This is rubbish.” I am what I am. We are what we are. We cannot be anything other. So what’s the use of flagellating ourselves for simply being ourselves? Self-loving isn’t necessary. Self-respect is.

And let’s note here that this also extends to all our co-occurring conditions, such as Executive Dysfunction, Sensory Processing Difficulty, sleep irregularities, alexithymia, etc. I used to feel a lot of shame around these, but after years of struggle, I’ve simply accepted that I have problems with things like organising myself and my time/belongings, sleeping regular hours, coping with various sensory inputs, and recognising what I’m feeling. I’ve learnt that it’s okay to be different, to have different needs, and to do whatever’s necessary to accommodate them. And to stand up for myself when people try to tell me otherwise.

2) Exploring new identities around gender and sexual expression. In the last couple of years, I’ve discovered there are actually new ways to describe how I connect to others, how I am in relationships, and how I define my inner self. Realising that I’m non-binary and almost certainly aromantic and demi-sexual has helped me clarify that my feelings around connection are not flaws I should overcome, but simply part of who I am.

And once again, the understanding that I’m not alone, that there are actually labels for all the feelings I had no words for, has helped relieve a lot of stress. I’m finding another community, one that often overlaps with the autistic one, and no, it’s not all about younger generations or being ‘trendy’, as if identities were like fashions. It’s about deep ways of being, and some of us older ones are finding a new peace and self-confidence in realising that we’re just not into romance, or that we need to get to know someone before becoming intimate, and that this intimacy may not include sex, that friendships can be just as powerful and important as sexual/romantic relationships. Being single is not an inferior state, and Romance is not necessarily the pinnacle of human connection.

3) Taking back my personal power. This has been perhaps the biggest step of all, and I couldn’t have done it without the previous ones. My whole life, it seems, I’ve been pushed around, dominated, bullied, manipulated, dumped on, scorned or belittled or outright abused. Over and over again, people have told me what to do, what to say, what not to say or do, how I should live my life, what opinions I should express and how, what I should or shouldn’t eat, what labels I should or shouldn’t put on myself, what I should write about, even how I should dress or walk or stand. And sad to say, I mostly put up with it, either because I was scared, or didn’t know how to stop it, or thought it was normal, or even that I deserved it.

But I’m tired of being pushed around, and I refuse to let anyone do it anymore. I refuse to put up with anyone telling me what to do, whether it’s a bully on a Facebook post trying to excuse other bullies’ behaviour, a martyr mommy telling me that I should shut up because I don’t understand what a ‘burden’ autistic kids are, someone sending me messages simultaneously putting me down and telling me what to do, a health professional telling me to eat foods I loathe or that I ‘don’t need’ vitamin supplements, or an obnoxious person in a public carpark trying to boss me around.

That’s not to say that all my old habits and reactions have completely disappeared. A lifetime of patterns of please-and-placate, submission-and-appeasement, aren’t easy to get rid of. There are frequent ‘knee-jerk’ reactions, but they’re getting weaker, and after a moment my new patterns of thought kick in and cancel the old ones out. I’m getting better and better at this business of standing up for myself, even if this simply means walking away from confrontation, or blocking toxic people. These can be acts of self-respect too. And this change is, I hope, the final shift, the final throwing off of the traces that once kept me bound, the last foundation stone of a life where I don’t have to hate myself, feel ashamed of myself, feel weak and powerless and stupid, and so on.

Anyway, this is where I’m at, right now. So much more comfortable in my own skin, and with the public expressions I have, that I don’t need a private outlet for negative feelings anymore. I can simply be, be myself, with all my faults and idiosyncrasies, but still a person worthy of life, worthy of expressing myself, worthy of a space in the world.

And so are all of you.

More on Borderliners

I’ve written here before about my problems with those with borderline personality disorder. It’s a special kind of hell they can put you through. Yet there seems to be a growing movement to somehow sweep all that under the carpet, and complain about the ‘stigma’ surrounding them. The latest such post I’ve seen even says that ‘if you get abused, don’t blame it on them being a Cluster B personality disorder’. (Apparently, there are heaps of similar YouTube videos too. I don’t dare look.)

The problem with this is that the very roots of their abusive patterns lie in their untreated disorder.

Their personal histories mean that they have almost no concept of boundaries, or of what constitutes a ‘healthy’ relationship, or friendship, or any kind of connection for that matter. (Because of this, they’re almost as likely to be victims of abuse as perpetrators of it, and in fact often switch back and forth between the two states.) Hence, they consider any emotional tactic as okay if it controls the other person, and alleviates their terror of abandonment.

And their victims? Because they’re the ones forgotten in this ‘rehabilitation exercise’, their very existence almost denied by this ‘removal of stigma’. What are their lives like?

Imagine for a moment, that you’ve struggled through years of emotional abuse from your partner. You’ve endured temper tantrums, hissy fits, massive sulks and cold silences that can last for hours or even days. You’ve suffered through long rants about just about everyone you know - your family, friends, etc - effectively isolating you, and making you entirely dependent on them. You’ve been torn apart by the endless and relentless criticism of every aspect of yourself, worn down by the list of your personal ‘failings’, and how everything is Your Fault, and nothing you do is ever good enough.

Eventually you’ve come to believe you’re deficient in every aspect of your personality, worthless and useless, not even a proper human being. You’ve been manipulated so much, gaslighted so much, tossed around so much, that you no longer know what the truth is, about anything, but most of all about yourself. And when you tried to express your feelings about anything, those feelings were discounted, scorned, or just ignored altogether, because they make it plain that only their feelings matter. Everything must centre around them, or there’s hell to pay. So you’ve learnt to repress your real feelings, and tried to keep your partner happy at all costs. You’ve become psychologically beaten down. Self-esteem shredded. Shamed. Silenced. Disappeared.

Eventually, you’ve realised that nothing you do will ever appease or please them, and scraped together just enough self-respect to get out. After a while, your head cleared enough that you slowly realised that you’d been emotionally abused, and a small iota of relief seeped into you. Maybe it wasn’t you, it was them.

And then. Somewhere, somehow, you stumble across a list of characteristics of this thing called ‘Borderline Personality Disorder’. (Or maybe it’s Narcissistic Personality Disorder, the two have very similar characteristics.) And something in your head goes, OMG, tick, tick, tick, tick! That’s THEM! And you realise, no, you’re not crazy, or lazy, or stupid, or worthless. It really WASN’T you! A wave of relief washes over you, and your deep self-hatred begins to lift. Maybe you’re not so worthless after all…

Or perhaps you’ve had to watch helplessly as another such person created havoc, brainwashing and manipulating their spouse, turning them against the spouse’s own family, spreading malicious gossip about other family members behind their backs, running down their personal and even professional reputations, and finally so egging the spouse on, that they commit an act of violence against another family member. They end up effectively divorcing that spouse from their family – which of course, you finally realise, was their objective all along. And you feel sickened by it, and them.

Or you blindly trust a so-called friend, who seems okay to start with, but then begins to increasingly scorn you, disrespect you, boss you around, telling you what to do and even what opinions you should have. Meanwhile, they’re also isolating you, ranting at you for hours running down pretty much everyone else you know, and leaving you increasingly dreading contact with them. And when, eventually, you’ve had enough and decide to set some boundaries with them, they explode. How dare you set limits! Wearied beyond measure, because you’ve been here before, you distance yourself from them, but this doesn’t stop them doing their damndest to run you down to all your friends. You consider yourself lucky to have gotten away from them, but the mere mention of their name makes you feel like you’ve been wading through excrement.

After any, or all, of these experiences, you finally feel like you’re starting to get some clarity, get your life together, your self-respect together… and then. And then. You stumble across a piece like the one I mentioned above. One that talks of abusers like your ex, or your ex-friend or someone else you’ve known, as ‘unfairly maligned’, as ‘victims’ of ‘discrimination’ and ‘stigma’ against the mentally ill. And that people need to ‘accept’ them, even embrace them, as they are. That gosh shucks, they’re just people like anyone else...

And you’re cast right back into it. BAM. Into feeling like the worst of the worst. Into self-hatred, into wondering if you’re a worthless failure, a nobody, a nothing. Again. You’re triggered, again.

Traumatised, again.

Shamed, again.

Silenced, again.

Disappeared. Again.

Because you know you’ll never be able to forgive the harm they’ve done, and you feel sick to your stomach at the thought of ‘embracing’ anyone even remotely like them. Are you a ‘bad person’, you ask yourself? Is your anger, your fear, your loathing and pain a personal failing on your part – again?

NO. It isn’t. Because these ‘stigma removers’ are going about it the wrong way, albeit for the right reasons. The Cluster B disorders are not like other mental illnesses, some even dispute they are truly mental illnesses. They are viewed by professionals, rightly (I’ve seen borderliners complain that mental health staff ‘treat them badly’, which can be translated as ‘they know all my tricks’), as the most difficult disorders to treat – precisely because they so often refuse to face up to themselves, or admit that they’ve done anything wrong. That they are mostly able to function in society, ‘pass for okay’, only adds to that. And increases the likelihood of them doing it all over again, sooner rather than later.

Patting them on the back and saying ‘there, there, it’s okay, we understand you had a rotten childhood, it’s not your fault’, not only scapegoats and re-traumatises their victims, but it doesn’t actually help the borderliner. At all.

They don’t need pats on the head, or more love, or whatever. That, I can tell you from bitter experience, is pure enabling. I tried it, for many, many years. I worked on being ‘supportive’, on being a good listener, on helping them ‘work through their issues’. It didn’t work. Their behaviour only got worse and worse. It wasn’t till I stopped doing all this, that things improved even a little – and I though, wow, I should have done this years ago! But it was really too late, I was done, out of there, gone and gone.

So to those borderline apologists, I say this - NO. They don’t need their ‘stigmas’ removed. Instead, they need to have firm limits set with them. To be told ‘your behaviour is not on, you need help’. And to be made to get that help – specialist help, such as Schema or Internal Family Therapy, not just some poor dupe of a regular counsellor who they can fool into believing that there’s Really Nothing Wrong With Them. Because they are so good at that, often possessing a good deal of personal charm and manipulative ability.

And to the borderliners themselves, I say – if you truly want to be ‘rehabilitated’, get your act together. Both individually and collectively, acknowledge the harm you’ve done – all of it, not just the select bits that don’t make you look so bad. Get serious help of the kind I mention above, and stick at it, for years if necessary, until they say you’re done. It may take years, but it’s worth it. You can be healed. You can have healthy, functional relationships as a result. Do it.

Because I don’t want to keep writing about this. I’d rather be writing on autism and autistics, or working on my next book, or completing any of the many unfinished paintings I’ve got lying around. Hell, I’d rather even be dealing with the ants in my kitchen than talk about this again.

But these posts keep popping up, and someone has to say something. You can dismiss me as ‘full of hate’, or as too ‘damaged’ to be worth listening to, or whatever. I don’t care. If it was only me, if it only happened one time, with one person, I wouldn’t say anything. I’d write my experiences off to bad luck. But it wasn’t only once, and isn’t only me. There are a lot of others out there, still reeling, still suffering in silence, licking their wounds and wondering what’s wrong with them. I speak for them, because someone has to speak up for the victims, and for sure it won’t be the enablers and reputation ‘cleaners’.

PS – I know that many autistics are wrongly diagnosed as borderline before their autism is recognised, my post isn’t about them. I feel for them, it must be a horrible experience. I’m also aware that some ‘anti-borderliner’ websites are written by male survivors of female borderliners who are using it to fuel misogyny. I know this. But it doesn’t cancel out any of what I’m saying.

PPS - I suppose it might be possible to have a decent relationship or a friendship with a borderliner, if you set firm boundaries right from the start, and keep reiterating them. But frankly, I don’t want to have to work that hard. I’d rather associate with people who respect me from the beginning, without having to be pushed into it. People who are restful to be around, not constantly creating drama or discord. I try to be someone who is inclusive and accepting of difference, but there have to be limits, and this is mine.

I'm Tired of People Defining Me

I’m tired of people trying to define me. My whole life, people have been telling me who and what I am, how I should act or react, and how I should live my life.

It started very young. When I complained about bright lights or strong smells or loud noises, they told me “it’s not that bad”, and I should “stop being such a whinger”. When I was a teenager, I was told I “shouldn’t be so anti-social”, and I should “just make friends”, as though this was easy. If I tried to say I couldn’t do something, I was told that “of course” I could do it, and that I was just being “unco-operative”.

If I wore certain clothes that I felt comfortable in, I was either ridiculed or pressured into wearing more “fashionable” clothes. I was told that my behaviour was “rude” and “un-ladylike”, and that I must be “nicer” to people, especially men. Later, after I became a feminist and came out, a different bunch of women let me know I was expected to be a “right-on-sister” instead - a different set of expectations, but no let-up.

My differences were cast as personal flaws or deficiencies, and I was told that I just needed to “try harder”. They would tell me to “just relax” and “be myself”, but when I did, they said “not like THAT!” If I expressed my real feelings or thoughts, people told me I was weird, or that “nobody” felt like that, and that I needed to “shape up my ideas” or “get real”. Or they would tell me I “must” feel such-and-such, or have this or that neurosis, because of my behaviour or attitudes. I was told I should “speak up more”, or that I was talking too much and should let others have a turn. I was “too quiet” or “too loud”, “unfriendly” or “clingy” or “nosy”, and on and on. No-one, it seemed, was quite content with me, no matter what I did.

My (now-ex!) partner would oh-so-confidently explain to me what I “really” felt. Or that what I felt “wasn’t normal”, that it was symptomatic of all that was wrong with me, and that if only I listened to her and did what she told me to do, and became what she told me to be, all would be well. She told me exactly what sort of person I was, and what my faults were, in great detail. According to her, I was a terrible lover, a lousy friend, a bad mother and, she implied, deficient even as a human being.

When I became ill, some thought I was “just being lazy”, or a “piker”. Even when I finally got diagnosed with Chronic Fatigue Syndrome, it didn’t stop. There was the alternative healer who told someone else that it was a “pity” I’d been diagnosed, implying I’d use it as an “excuse” to “wallow” in my illness. And the counsellor who asked one day why didn’t I “just go for a run round the block?” This same counsellor also once spent almost an entire session ripping into me for being on a benefit. It became obvious she had a low opinion of beneficiaries, and me for being one.

Even those who accepted the diagnosis and meant well, would tell me I needed to “just take this seawater solution”, or do this or that pet therapy of theirs, or some other “miracle” cure, or “just think positively”. Or that the vitamins I was taking were “just expensive pee”, always without asking me what worked for me.

And then I discovered Asperger's and autism, and oh look, another lot of definitions. The ‘experts’ solemnly pronounced me incapable of empathy, of having emotions, of understanding others or even myself, of being able to relate to others or be a good parent, etc, etc, etc. It seemed that, once again, I was a deficient creature, barely even a human being, in the eyes of others who had never even met me.

Being autistic and physically disabled aren’t the only things about me which others have used to try and define me of course. Religions have tried to reduce my innate sexuality to a mere “lifestyle choice”, and tell me that I’m a “sinner”, and even claim, as one NZ religious leader has, that gays cause earthquakes (no, I’m not kidding).

Men have tried to ‘mansplain’ things to me, told me I “should smile more”, or suggested I “don’t understand” how the world works. Able-bodied people have tried to ‘able-splain’, in the same patronising fashion, without bothering to find out first what I actually already know or don’t know. Or they’ve treated me as if I was mentally deficient, again without bothering to find out anything about me.

Sometimes even other autistics don’t understand me, their image of me seems to be incomplete, or even totally wrong, like the one who told me I was a “man-hater”, when I challenged his sexism. It never seems to end.

But my feeling now is – NO.

NO.

Enough.

I’ve had enough of this. I refuse to allow my life, my very self, to be defined by anyone else, ever again. I am what I am, and that’s good enough for me. And it’s just going to have to be good enough for the world too.

Everyone has their bottom line, the point beyond which they won’t and can’t go, and this is mine.

I don’t mean I’m going to go around wildly starting arguments or pushing anything on anyone. I do mean I will stand my ground, and no longer allow others to define me, to tell me what I am or should be or how I should live my life. I will back off, but I won’t back down.

This is me. The real me, as defined by me. Get used to it.

The Individual Is NOT The Enemy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let’s do it.