The Things I Do And Don't Care About

I’ve been thinking lately about the things I do, and do not, care about. I’ll start with the latter first, because they have especially been on my mind. 

I don’t care what others think of me. For much of my life, I was a classic people-pleaser, riddled with anxiety about what others thought of me, trying to live up to social expectations and ‘earn’ approval. Eventually I realised this was a battle I was doomed to lose. No matter how hard I tried, I couldn’t mask well enough, pretend well enough, be good enough to be truly acceptable. So I gave up. Not all at once, but gradually and definitely, and the older I get the more I simply don’t give a rodent’s posterior what people think of me. It’s very liberating.

I don’t care what people want if they don’t say it. I used to fret obsessively over this too, trying to figure out what people wanted. Now, if people don’t say what they’re thinking, I can’t be bothered trying to read their minds. Why should I? If they can’t be bothered being upfront and honest, I can’t be bothered engaging. Say it or stay silent, I don’t care.

I don’t care what people think about my appearance. This is another thing I spent a good deal of my earlier years fretting over, trying to ‘fit in’, whether it was with ‘normal femininity’ or ‘right-on lesbian feminist’ rules or ‘hippy left’ style or whatever. Nowadays? I’m a t-shirt and jeans person, rarely wear makeup, have short hair, and sometimes get mistaken for a man, at least until I turn around or speak. But I do love bright colours and jewellery (though I don’t wear it much for sensory reasons), have even worn a skirt on occasion (okay, for funerals, but still). If anyone doesn’t like the ‘look’ of me, however, my answer is simple – don’t look! I don’t care what others wear either. There are far more important things.

I don’t care what people think about how I live my life. People have long been trying to tell me how I should live my life, from my parenting (often from those with no kids or experience with them), to how, when and how much I should ‘socialise’ (regardless of me trying to tell them I can’t do it like that). But possibly the biggest criticism has been around how I manage my disabilities, especially my CFS. I’ve been criticised for taking vitamins - ‘they’re just expensive pee!’ - even though they have literally saved my life, told I should ‘just go for a run round the block!’ at a time when I couldn’t have crawled around it on my hands and knees, and had an actual naturopath I’d formerly visited tell someone else that it was ‘a pity’ I’d gotten a diagnosis of CFS, as I would ‘just use it as an excuse’ to not try to get better. I kid you not.

So what DO I really care about?

 I care about one Big Thing…

The state of the world.

Last month, our former Prime Minister, Jacinda Ardern, told the 2025 Yale graduating class that the world has turned into “an all-out dumpster fire”. She is so right. Now, the world never has been a wonderful place (newsflash : there never really were any ‘good old days’). That’s why my generation fought so hard to change things (yes, those boomers people love to criticise, even as they enjoy the benefits we gained them). But more recently, it’s become just… awful.

There is no other way to describe it. Fascism on the rise, so many of the advances we fought for now being either eroded or outright destroyed, and not just in America either, though that is definitely the worst conflagration (and it is literally turning into an actual conflagration in parts, eg ICE agents tear-gassing protesters, Marines brought in, actual goddam MARINES), entire groups living literally in fear of their lives, the rich hoarding more and more wealth while the rest of the world struggles ever harder, too many fools trusting other fools rather than proven and verifiable science, disbelief of the media even when they’re reporting live on actual horrific events (I don’t have any special love for the media, but come ON folks, use your brains), Certain Nations sitting back smirking behind their hands at the havoc they had a hand in creating, genocidal wars where children and other vulnerable are dying by the dozen every day for the benefit of the greedy and the power-hungry, incipient environmental collapse while our politicians quibble about who has to give up the least, yet other nations attempting to position themselves to be Dominant Powers when the dust settles… on and on it goes, and there doesn’t seem to be any end to the horribleness of it all.

Or my sense of helplessness and horror in the face of it all.

And people think I should worry about what I or others wear, or what others think of me, or what some dipstick who doesn’t even know anything about CFS - or any other condition I have – thinks about how I should be handling my health or my life? When there’s so much awful crap going down? Are you kidding me?

Get outa here.

On Being Both Autie and Addie

As those of you who follow me on the Book of Faces know, for some time now I have become more and more certain that I am not only autistic, but ADHD as well. It’s true that some things like sensory overload and the ability to hyperfocus can be common to both conditions, as is my quite atrocious Executive Dysfunction. But that doesn’t explain things a lot of other things I’ve noticed about myself.

 I used to think it wasn’t possible to be both, and a test or two I did initially suggested that I wasn’t. But then I found better tests, and some uncannily accurate videos, and began to think and explore more. And now? I’m fairly certain, and becoming more so the more I explore. I call it being both ‘Autie’ and ‘Addie’.

Among the things I’ve noticed so far – and there will probably be more, as this journey is really only just starting –

- my erratic attention span and high distractibility, leading to ‘daydreaming’

- my frequent restlessness, both physical and mental

- quick frustration or boredom, with people, conversations, tasks and even jobs

- my need for stimulation and variety interspersed with periods of rest

- difficulty following verbal instructions

- chronic disorganisation, with major panic if (when!) I lose something important

- difficulty with time-keeping/awareness

- impulsiveness, ‘snap’ (and often disastrous) decision-making

- frequent job-hopping in my younger years and changing my major at university several times…

you get the picture.

And yes, I have the classic DOOM piles (or boxes, or bags, or overflowing drawers or cupboards…) even though my flat is way too small to accommodate much clutter. Like the two big boxes of stuff that need to go into my underbed storage which have been clogging up my tiny living area for WAY too long… Or the mountains of clean laundry that sometimes go unfolded and put away for days… Or the books piled up ON TOP of the bookshelves because I keep acquiring more but have nowhere to put them... And I’m not even going to talk about the dishes. Let’s just say they’re not my strong point.

So, yeah. Quite a bit of Addie stuff going on here.

In my earlier years, before I even knew I was Autie let alone Addie, life was …pretty chaotic. Not just in terms of actual mess or disorganisation - and there was plenty of that! - but in terms of the emotional cost. Depression, self-hatred, shame and self-blame, constantly telling myself how worthless, useless and stupid I was, over and over. With tears running down my face, I would be convinced I was a waste of space and should just do away with myself. I managed to overcome some of this when I discovered my autism and the autistic community, but there’s always been another layer, and now I know what it is.

So how does being both work in practise? (And bear in mind, this understanding is still a work in progress, as more light gets shone on my life.)

Sometimes, they help each other out. For instance, if I have something important to go to the next day, my Autie self will see me prepare everything I need the previous night. Or if I’m going on holiday, the Autie self will start making a list days prior, and ironing, folding and packing the day before. Because I KNOW that if I don’t, my Addie self will panic and run amok at the last minute, forgetting things, being late, and arriving in a highly distressed state, if I arrive at all.

On the other hand, my Addie self gives my rather stodgy, rule-bound Autie self a lift, pushing me out the door or into doing something different – the novelty/stimulation thing, without which I’d be trapped into a very boring life indeed. It’s seen me move around the country, launch into new activities, go out to events I probably wouldn’t otherwise, and generally take risks my Autie self quails or quibbles at.

But frequently the two are just in conflict. My need for stimulation and variety clashes with the need for order and calm. My Autie perfectionism battles with Addie impatience. My Autie needs for tidiness and keeping stuff runs up against my Addie desire to just throw the annoying stuff out the window or into the rubbish. My Autie wish for cleanliness is confronted by my Addie inability to focus on household tasks until they’re done. My Autie self has evolved more-or-less functional routines that get at least some essentials done, but Addie self (or tired self) sometimes rebels against them. Sometimes I can find a way out of these impasses, but other times there’s no winning. I can end up frozen, confused, and overwhelmed, not knowing what to do.

Sometimes I don’t even know which is affecting me in any given moment. If I can’t seem to get out of my chair, is it Autie inertia, Addie paralysis, or simple tiredness? (Having Chronic Fatigue Syndrome doesn’t help.) If I don’t start a task, is it because of Autie perfectionism, or Addie dislike of chores, or my Executive Dysfunction? Sometimes if I know, I can overcome it, and other times it just doesn’t matter. I’m screwed, any which way.

And yet still other times, they converge with each other in the worst ways, eg when both my Autie and Addie selves become so overloaded that all I want to do is curl up in some safe, dark, quiet cocoon until my jangled nerves stop screaming.

There are ways they nullify each other’s effects, like the Autie orderliness I mentioned above that prevents Addie panic. But while my Autie self has helped me to overcome or prevent a lot of typical Addie problems, for instance I use a lot of helpful ‘tricks’ – multiple alarms, to-do lists, lists, notes, visualisations, etc, etc, etc, to stay organised - overall, it ain’t easy being both.

Being Addie is possibly having a stronger effect on my life right now than being Autie, because the realisation is far newer and to the forefront of my mind, not to mention I’m gradually stopping all the ways in which I suppressed it (I did the same thing with my autistic traits when I first realised I’m Autie). You have to adjust to a new knowledge of yourself, re-evaluate your mindset/approach to life, and I’ve largely done this around being Autie. But not for Addie, not yet. I don’t have a formal diagnosis either, it’s expensive and there are long waiting lists, especially for adults. So it’s still a work in progress.

But I’m getting there. And my life makes so much more sense now. Perhaps, finally, I can stop being ashamed of simply being me.

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.

Twilight

Nearly thirty years ago, during the winter when I was most severely ill with Chronic Fatigue Syndrome, I’d sometimes fall asleep in the afternoon and then wake up at sunset, and become extremely upset, terrified and crying. The overwhelming feeling was that not only the day but my entire life was slipping away into the dark, as if I was dying yet not dying at the same time. I wanted to write, to paint, to just get up and move, but I couldn’t. I couldn’t even read. I couldn’t do anything but lie there, not knowing if I would ever be able to do anything meaningful again. I wondered if my life was already over. If there is a hell, I imagine it to be like that.

Fast forward to now. While I’m not that low anymore, I’m not young anymore either, and ‘Chronic Fatigue’ means just that. There’s never any point where I’m not at least a little tired, and the question is always ‘how much can I push it, and for how long?’ Many people don’t understand the fragility that comes with chronic illness, how a sudden drop in energy can come on you like the blast of a cold wind, how you must carefully hoard your ‘spoons’, figuring out if you have the reserves to do a thing, or will it backfire on you. This has been my reality for so long I’ve forgotten how it was to feel otherwise, and can only marvel at other’s seemingly limitless energy.

And as I’ve grown older, my health conditions have multiplied. Arthritis, low thyroid, Type 2 diabetes, GERD, probable IBS, various inflammations and injuries… the list goes on. I also had Covid recently, which hasn’t helped. CFS however remains the condition that most profoundly affects me. It means that I have fewer energy reserves to battle with my other conditions, and at this point I don’t know if the slow deterioration I’ve been experiencing in recent years is due to my CFS getting worse, simple aging, or if something else is to blame.

Realistically, I know I have maybe twenty years left at most, and it’s anyone’s guess how many of those are likely to be productive ones. I feel the urging, every bit as much as I did back then, to do as much creative work as I can - before I lose the ability to do so again, permanently. This is a big reason why I no longer care about or waste energy on anything or anyone that gets in the way of me being my authentic self, as this is where my creative work originates. Yes, I have important people I care about, but beyond that…. Life’s too short. Literally.

I like to think I’m realistic about what I can achieve. The odds are against my becoming The Next Big Thing in fantasy fiction, for example, or writing ‘THE’ Book On Being Autistic, or even making a living out of writing, let alone getting rich. So I’m not fooling myself, but I need to Do Things anyway, because the alternative is dying feeling like I’ve missed the only chances I have left to achieve anything with the creative gifts I have. And that’s without the creative impulse itself driving me.

But that’s not my only motivation to ‘get busy’ with writing. I look back and want to weep sometimes, how much of my life has been wasted. If only I’d known everything then that I know now about myself, how different things could have been. If only I’d had the right supports, the right understanding, the acceptance that is still begrudged to so many neurodivergents, how different my life would have been. How much more I could have achieved, how many projects I could have completed, books I could have written, paintings I could have done… How I could have known how to look after my health better, let go of anxiety better, got out of toxic relationships earlier or not gotten into them at all, and most especially accepted my neuro-self better…

Pointless, I know, but I can’t help thinking that it could have been all so different.

Because my chronic weariness isn’t just physical, but a weariness of the SOUL. I’m so tired of a world which I constantly jar against, and which continually judges us and finds us wanting, while usually lacking all understanding of what it really means to be autistic. I’m tired of the implicit insistence that ‘neurotypical is best’, when neurotypicals have so many conspicuous lacks and faults themselves. Being NT is not the be-all and end-all of being human that too many still assume it is. It’s a seriously warped and crappy world they’ve created, and it feels like it’s getting worse by the day. When my time comes, I won’t be sorry to leave it, only to leave the people I care about. Yes, I’m angry, but it’s a tired, ancient anger, laced with sadness, with little hope of any resolution.

Anyway. Here I am, in the twilight of my life, and I‘m really not sure where to from here. I still want to make a difference however, and still feel I have something to contribute. Time will tell how much, and in what way. But it’s a primary motivation to carry on with my efforts to get at least *something* done.

Because while it’s too late for me - I’m a damaged soul - if there’s one thing that keeps me going, it’s a determination to try to make things at least a *little* better for those who come after us. If anything I write or do or say helps others not go through the kind of life I’ve had, or to imagine a better or at least different world, then it’s worth it. Because they deserve better. We all deserve, and deserved, better.

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.