Fearing Other People

Almost all my life, I have been afraid of other people.

It started quite young, when I first began to be aware that I was ‘different’ to others, which I interpreted as ‘lesser than’. I had only those around me to compare myself to, and it was obvious that I lacked something, some qualities or understanding of the world, that they had. That I might have other qualities just as good never occurred to me. This was the start of my fear of being ‘exposed’, my inadequacies painfully revealed for all to see.

My frequent social blunders and people’s hostile reactions added to my anxiety. I never knew when the next attack would come, or from where, let alone why such truckloads of disapproval would be dumped on me. In fact the older I got the more expectations it seemed others had, and the more I seemed to make mistakes no matter how hard I tried - and believe me I tried so hard – and thus my fear of other people and their reactions to me continued to grow.

Even after I began to acquire some social skills, or to mask as I’d now call it, I was always afraid of being exposed – because ironically these skills actually seemed to increase the risk that at any moment the mask might fall off, and I would be revealed as ‘faking it’. I was often subtly rejected anyway, but I felt sure that a more complete and utter rejection would follow if the full extent of my inferiority was revealed for all to see.

I think now that I probably had social anxiety disorder during this time. Not that I would have ever admitted any of it to any counsellor or psychologist, for fear of more judgements that would have left me feeling even more inadequate, more stupid, more everything ‘wrong’ and inferior. Looking back now, my tension and anxiety must have been obvious to many, but I think I was probably dismissed as ‘neurotic’ or similar. Some did try to help me, I remember being told to ‘just relax and be yourself’. The problem was when I followed that advice, I got more criticism and hostility, not less. I would withdraw again, more confused than ever. I was caught in a vicious circle of shame, low self-esteem and fear, which led to more shame, lower self-esteem, more fear, around and around.

And then came ‘that’ relationship. As the relationship progressed, my partner made it more and more plain that in her eyes, I didn’t measure up, as a partner, as a woman, and quite possibly as a human being. Nothing I did or said was good enough, and as fast as I ‘fixed’ one thing I’d done or been, another would crop up, the nagging criticism was constant and devastating. I lived in greater anxiety than ever, trying so hard to please, to be and do what she demanded. None of it was enough, I wasn’t enough, I could never be enough, it seemed. My self-esteem plummeted ever lower.

Eventually, of course I burnt out. I gathered up what little strength and shreds of self-regard I had left, and exited the relationship. I was empty, lost, and broken, with nothing to give anymore. I just didn’t have the capacity.

I retreated to live alone in a tiny cottage in the country where I barely saw anyone for days at a time. Combined with being relieved of the pressures and demands of an emotionally abusive relationship, I now had lots of time for self-examination. It was not an easy time, as I finally admitted to myself just how terrified of others I was.

I began piece by piece to unravel and let go of all that terror, a process that in some ways continues today. I had no understanding of what caused that terror, that wouldn’t come for many years more, and I still thought of myself as an inferior specimen of humanity, but I started to not care about other people’s opinions and judgements of me. It seemed to me that they would judge me and criticise me no matter what I did, so what was the point of worrying about it?

Fast forward several years, and the realisation of being autistic. Through meeting other autistics, I began to slowly realise my ‘difference’ was not an inferiority at all, but a unique way of being. It took some time, but my self-esteem began slowly to repair. My fear was slower to decline, but as I grew more confident in my autistic self, it did slowly diminish. More years went by, and I realised that I’m non-binary, aromantic, and probably either demi-sexual, aceflux or something similar; and more recently that I’m almost certainly ADD (without the H). Understanding all of my ‘differences’ has further alleviated my fear and shame. Community was crucial to this, but so was a willingness to look at myself.

And now? I would say that my fears are more of a knee-jerk twitch, an ancient reflex soon quieted. Where it is tangible, it’s more of a pragmatic wariness rather than outright terror. At home, by myself, I can relax. But when I venture out, I’m always at least a little on guard. Some individual or, say, a group over there might be laughing now, but I never know when some minute error on my part means I become a target. (And yes, it has happened.) Better to move on and avoid them. And given I can only recognise potential abusers if they follow a pattern I’ve seen before, it’s just safer to avoid anyone I don’t know, with new people added only slowly, as they prove themselves.

The truth is that I’m still in many ways in retreat from the world. I have no permanent job, no partner, no dependent children, multiple health concerns and little involvement with the community at large, which makes it easier to stay solitary. My main social interactions are online, which I handle way better than IRL interactions. The bottom line is that I still don’t trust the world, or people.

The long years of fear have taken their toll of course. I feel that a lot of my health problems, especially CFS, low thyroid, GERD, IBS and possibly even the diabetes are the end result of all that stress and anxiety. You don’t gnaw on your own liver for decades without paying for it.

I’ve also realised that the flip side of fear is anger. There’s a lot of rage stored up in me, fearing the world has become FTW. Sometimes the anger is focused on a single person (most notably my ex), but sometimes it’s just a more generalised thing. It is, alas, mostly bottled up with little outlet for it, other than creative ones. Another kind of gnawing on myself. I navigate this every day. And I don’t expect anyone who isn’t autistic, or some other kind of neurodivergent, to understand it. How can they? Who can, if they haven’t lived it?

This is the first time I’ve admitted all this publicly. It feels cathartic to do so. Once upon a time, I could never have done it at all. That’s progress, I guess, but the world, and other people, remain the same. I remain the same. It’s only how I deal with it that’s changed.

On Wanting To Be Normal

Recently I wrote a post on all the ways in which I’m different from the mainstream. It’s made me more aware than ever of the whole concept of ‘normal’.

I know that there are many, too many, autistics out there who don’t want to be autistic. Who just want to fit in and be ‘normal’. I don’t agree with their stance, but I can understand why.

If you’re a young person who’s spent their whole life having it drummed into you that autism is a wrongness that needs to be Fixed, Treated, Managed and Social-Skills-Classed the heck out of you, if you’ve drowned in ‘behaviour plans’, IEPs and ‘special needs’, then of course you would wish you weren’t autistic. There are young adult autistics who refuse to identify as such, or even talk about it or be in contact with other autistics, because they’re so sick of all of that.

And if you’re an older autistic who’s spent a lifetime being put down, criticised, reviled, rejected, side-lined and/or abused for simply being what you are, struggling with co-occurring conditions like Executive Dysfunction or Sensory Processing Disorder, whether you have a diagnosis or not; if you’re unemployed, friendless, maybe homeless, struggling with depression, anxiety and other mental issues or addictions, then you’re not going to see much value in being autistic, and will likely reject the autistic community, think it laughable even.

I also know there are even autistics, both young and old, who support ‘that’ kind of autism organisation and their research into eradicating autism. I feel for them, I truly do, and I understand why they would do this, even if I don’t think it’s a good path to take.

The biggest reason not to take this path is simply this – it can’t be done. It’s gene-deep, brain-deep, neurologically-deep. It’s in your very nerves, muscles and cells. You can’t eradicate it. The only way to ‘rid society of autism’ is for all autistics to die and no more to be born, ie you can only eradicate autistics, not autism. Which amounts to genocide. And even if you don’t think this is a step too far, and/or you’re thinking well at least this would mean nobody would suffer like you have, consider that there are autistics who don’t feel this, who want to be alive no matter how difficult it is, and/or whose parents, family and friends, especially other autistics, very much want them to be alive. And you don’t have the right to decide for them. And that the biggest problem in all the above is actually people’s ATTITUDES to autistics. If that changed…

So my feeling is that we might as well accept it, even embrace it, and maybe even try to make the world a little better for all of us not ‘normal’, or at the very least give a giant metaphorical raised finger to the world, with our being proud to simply be ourselves. Because why the heck not.

In light of all this, I look at my own life, and while it’s been difficult beyond words, and there were long spells when I did try hard to be ‘normal’, I didn’t ever really see that ‘normal’ as anything wonderful. The paradox is that the very traits that make me different from NTs are the very traits that led me to think what the heck is so superior about these people? And this was long, long before I had any idea that I was autistic. This is the other thing at the heart of rejecting wanting not to be autistic – why would I want to be something I didn’t regard as an ‘improved model’, even if they obviously did? So no, I don’t want to be NT.

What about the other characteristics that make me ‘different’? Being gay, for instance? I’m gay/lesbian because I don’t find men attractive. So why would I want to be someone who did? And non-binary – same. If I don’t identify with either binary, male or female, why would I want to be someone who did? Then there’s being an aromantic - if I don’t find romance exactly thrilling, why would I want to? Same with being introverted, why would I want to be one of those noisy extroverts who plague me? You get the picture, I’m sure. It’s all the same paradox, knowing that the alternative is more acceptable to society, but I simply can’t find it an attractive enough state to want to be it.

So in what ways do I wish I was ‘normal’? I think the biggest thing I’d rid myself of, if I could, is my physical disabilities. I’d love not to have CFS, or arthritis, or even an ankle that hasn’t been screwed up ever since I broke it. I’d love to have normal energy levels. To get up in the morning and go about my day, without needing hours to rev myself up to regular speed, because if I rush, I’ll get dizzy, nauseous, sweaty and probably end up back into bed. And that’s on a good day. Bad ones, I likely never get up at all, except to take the pills that help prop me up, eat the foods I need for same, or to go to the bathroom. Bad nights, I barely sleep at all. And the next day or even days, just plain suck.

It would be very nice to get at least somewhat closer to normal than this. But I know it’s not going to happen, that there’s not likely to be a cure for CFS in my lifetime. And also knowing that ageing and lack of fitness have taken away a great deal anyway. Having CFS sucks, but so does getting old.

Another way I’d like to be ‘normal’ is to not be poor. But that’s linked to being physically disabled for so long, and to some extent to who and what I am. I was never good at jobs, and was forced to drop out of university because of CFS – an illness caused at least in part by the stress of attending uni without the supports I had no idea I needed. There are, I suspect, many autistics with CFS or some other stress-related illness or disability, not surprising given the amount of daily trauma we suffer. I’ve made a lot of mistakes in my life, but I think the biggest was forcing – pushing - myself to attempt ‘normality’, that it has harmed me on a very deep level.

In summary then, there’s not many ways I’d want to be ‘normal’, and they are based on things I don’t feel are intrinsic to me, unlike being autistic, gay, introvert, etc. If I could change my financial or physical status, I definitely would. But as things stand, I can’t. So I’m kinda stuck with them.

Being autistic though? I wouldn’t change it for the world. Even when it makes my life very, very hard indeed. I am what I am, and I refuse to apologise for it. And nor should anyone else.

My Struggles With Executive Dysfunction

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.

The Central Dilemma of Being Autistic

 There’s a phrase that’s been echoing in my head a lot recently - you can only be what you are.

 This may seem so obvious as to be not worth saying, but it’s a privilege that most autistics aren’t allowed, or don’t dare allow themselves. Our authentically autistic selves are considered Not Acceptable to most of the world. We are all too often not permitted to be what we really are.

 Autism is defined as ‘abnormal’, and a synonym of abnormal is ‘unnatural’. And that’s how autistics are seen. NTs hold themselves as THE model of how to be, so in their eyes we’re a deviation from nature, a distortion of what a human being ‘should’ be, and hence we must be ‘corrected’, no matter the cost. It’s a kind of subconscious arrogance, manifesting as ableism. It involves a wholesale ignorance or refusal to acknowledge that the way we are is totally natural FOR US, both as individuals and collectively.

 Our idiosyncrasies and caprices, our strict orderliness or total lack of it, our raging sensitivity, our contrary minds, our brutal honesty or social obliviousness, our ways of talking or moving or connecting, our free-wheeling stims and our sudden spurts of joy, our abrupt hungers and our intense griefs, our deep diving into things like maths or cars or lampposts or history or outer space or music or brain chemistry… All the things that make us gloriously, outrageously, flamboyantly, achingly and overwhelmingly autistic, have been cast negatively, and seen as things to be eradicated, even when some of those things are also evident in non-autistics, and even when they’re harming no-one.

 The unspoken rule is, if an autistic does it, it’s wrong, simply BECAUSE they are autistic. The very state of BEING autistic is judged wrong. Is it any wonder that so often we can’t accept ourselves, when this is how our intrinsic state of being is framed? We’ve become conditioned, in one way or another, to feel inferior or just plain ‘wrong’ - regardless of whether or not we even know we are autistic. We’re taught to despise our true selves anyway, or at least to become determined to hide them, to avoid the inevitable repercussions.

 This often leads to the phenomenon known to autistics as ‘masking’, which is nothing to do with Covid, but rather the various ways in which many of us try to conceal our autistic behaviours and thought patterns, to present ourselves as ‘normal’. We might be pressured to do this by others, or we might do it to ourselves, in order to fit in, keep a job, etc, or just to avoid hassles or abuse. The cruel irony is that over time it can develop into such a polished performance, that even if we do come out, people won’t believe we are autistic, and sometimes we don’t know how to stop doing it, or who we are or might be without the masking.

 There are also autistics who can’t mask, or who can’t do it very well, or simply refuse to, and they can pay a huge price for that - which tends to make those of us who can try even harder, to avoid that fate. But even if we’re able to mask successfully, that also comes at a huge cost. Addiction, depression, anxiety, burnout, PTSD, self-harm, other mental illnesses, and the consequences of those, are rampant in the autistic community, and our average lifespan is only in our thirties.

 Thus the central dilemma of all autistic lives is, how much can we be real? And if we can’t or don’t mask, or the mask slips, how much and in what ways will we be punished for it?

 This dilemma presents itself in innumerable ways, small and large, on a daily basis. Punishments can be anything from a blank look or being ignored to physical attacks, abuse or even murder. We know that we run huge risks just by existing as autistic. Small wonder then, that some of us become surly, defensive, prickly and ‘unco-operative’, while others mask just to survive. Please note in no way is it my intention here to judge anyone’s choice on this - as a friend of mine said recently, “Masking is not wrong. What is wrong is that we have to do it.” And I’d say the same about being ‘un-cooperative’, or whatever other behaviour choices individual autistics make in order to get through each day with any shred of self-respect or sanity intact.

 So how can we be authentically autistic, in such a world? How can we get people to accept us as we are? The short answer is that they won’t – unless we DEMAND that they do so. And in my experience, the best path to building the inner strength to be able to do that, as individuals and as a group, lies in finding our anger.

 Anger is empowering. Anger is cleansing. Anger is also freeing. Anger allows us, after years of taking crap, to say “you know what? I don’t want to do this anymore”, or “this situation stinks”. It’s the little voice that starts saying “what right do non-autistics have to tell me how I should be anyway?” It tells us that we deserve better, that we have a RIGHT to be treated better. A whole heap better than what we’re currently getting.

 And yes, I know that for many if not most autistics, expressing that anger can be very risky. So much so, that some of us daren’t allow ourselves to even feel it, maybe thinking that we don’t have a right to it. While other autistics feel so much rage and bitterness, that it explodes ‘inappropriately’, and they’ve paid the price for that. Some of us alternate between these two states, to our detriment both ways. There isn’t a perfect remedy for this, but I have found that the most productive solution is to channel the rage into freeing our authentic autistic selves. So much of our rage (and our suppression of it) is because we haven’t been allowed to, or haven’t dared to let ourselves, be real. We have to demand acceptance, for all our sakes.

I recognise that I’m in a privileged position - I’m old, don’t have a job, etc, and personal safety aside, don’t much care anymore what anyone thinks of me. Thus I have little to lose. And I know that many others have way, way more at risk if they take off the mask, or allow themselves to get angry. And I’m not dismissing the very real risks of doing so, especially with the way things are right now around the world. Believe me, I do not.

 But at some point, in some way, we have to start being true to our real selves to at least some degree, or we’ll die inside. Or just die.

Because whichever way we go, there’s a price to pay. People often sense something ‘off’ about us anyway, no matter how well we mask, no matter how hard we work to divert their attention from our ‘faults’, to squeak through another day, and another, and another, and another…. How long before they realise we’re not THAT normal, and the punishments start? And even if we do manage to slide by, how long can we keep up the façade? How long before it all just becomes too much, and we break down? Burnout alone can be a huge price to pay.

 Now, I’m not saying that we all need to become hotshot activists/advocates, shouting to the world. That’s not a route everyone can or wants to take. There needs to be a recognition that everyone’s path to unmasking will be different. The process of unravelling the mask can be as slow, complex and experimental as building it was in the first place. And connecting to your anger can be just as difficult and just as prone to trial and error.

 It might be that you start with something small but quietly revolutionary, like allowing yourself to stim when you’re alone (for years, I didn’t even let myself do this), or to quietly, privately, dive into a special interest you’ve denied yourself. Or you could allow yourself to wear clothes or hairstyles others consider weird. You could create a blog, or YouTube videos, or paintings, or music, or whatever, which expresses something of your true self. Or perhaps you’ll leave a job that’s not right for you, or simply begin to be more honest with those around you, even if they do start looking at you funny, or, well, just about anything that allows you at least a little ‘wriggle room’ to BE you. To be authentically, wonderfully and uniquely autistic, to whatever degree you can manage - and you’ll probably find that degree widening over time.

 Because you can only be what you are – despite the world’s, or your own, strenuous effort to make you otherwise, and no matter how much you might hate yourself, and wish to be something else. I did all of those for most of my life, until I finally realised the futility of it. Why fight your true nature? Why not accept it, and work with it instead? You don’t have to love or even like everything or anything about yourself, I’ve discovered, in order to accept yourself. (You might ask, how can I accept negative things like meltdowns? You can accept the part of you that is sensitive, and work with it, not against it. This applies to all of your autistic traits, for that matter.)

Repeat after me – YOU ARE FINE JUST AS YOU ARE. THERE’S NOTHING WRONG WITH BEING AUTISTIC. And anyone who tries to tell you so, is wrong, wrong, and wrong. Find your rage. And channel it into being your true self. Because you cannot ever be anything other than what you are. And it’s time to stop pretending to be anything else.