Wasting Energy

I pressed my back into the corner of the cold wall behind me, as hard as I could, hard enough to distract me from the need to twirl or flick my fingers or flap my hands, hard enough to counterbalance the brightness of the light emanating from the interior of the van parked in front of me, next to my stricken car. I’d changed out of my sunglasses into a pair of ordinary specs, because I knew that wearing sunglasses on a December evening would attract questions I didn’t want to have to answer.

My internal dialogue was on a repetitive loop: “Mask like fuck, mask like fuck, normal, normal, normal, mask like fuck, mask like fuck, normal, normal, normal…”

“How long have you lived in your current place then?” said the breakdown man.

I felt my spouse, who was standing beside me, tense. I knew the thought process that would be going through his head: “Why does he want to know? He’s going to come and destroy our lives isn’t he? How does knowing when we last moved house help with mending the car?”

I knew that dealing with this sort of inane chatter was my job in these circumstances. My spouse, who had managed, half an hour earlier, to make the telephone call to the breakdown services while I sat on the floor in the dark rocking back and forth in a total panic, would simply be unable to manage such questions, so it was down to me.

“About 4 years,” I said, using one of the learnt scripts I keep in my head for such occasions. “It’s handy for the shops,” I added, hoping this was good small talk. It seemed to be OK.

Further questions followed. I reminded myself that the man was probably just trying to pass the time, and that he probably didn’t intend this to be some sort of cross-examination under torture. I did the best I could to smile and chat, my brain feeling like it was working so hard it might actually explode, my body tense and stressed from trying to keep still, my back pressed hard against the cold wall for a bit of relief.

The computer sitting on the car engine finished its diagnostic work. The man started to show me graphs, figures, numbers, and to talk about the state of the car battery (totally knackered). I relaxed a little. This was relevant, and seeing graphs was calming and made sense. There was now a purpose to the conversation.

The breakdown man said he had a battery on the van he could fit there and then. Since it was 2 days before Christmas, late in the evening, and we were quite a few miles away from home, this was a good outcome. Battery specifications and prices were discussed, the battery was fitted, and a further few “social” remarks were made. I didn’t challenge his (incorrect) assumption that we’d been Christmas shopping, although I did remember to thank him and to convey appropriate seasonal wishes I think.

By the time I got home my speech had failed and I was utterly exhausted.

***

Since I discovered and disclosed that I’m autistic I’ve attempted consciously to conceal it, and to mask my autistic traits, on only a handful of occasions, such as the one above. That night I was low on spoons (energy), having already been out in the world for a few hours. We didn’t know what sort of breakdown repair person might show up, or whether they’d know anything about autism. We didn’t know what prejudices they might have (over the years we’ve found motoring to be a problematic area of life at times – my spouse doesn’t drive and the car is mine but because he looks like a man and I look like a woman (we’re both nonbinary) frustrating assumptions have often been made), and we didn’t have energy to educate or to explain – we just wanted to get home with a fixed car.

So the decision was made to mask, to act as “normal” as possible. Changing my glasses, removing the wristband I wear that says “Autistic” on it, remembering to smile and make some sort of attempt at eye contact if necessary, putting my tired brain into overdrive in order to interact and maintain speech, frantically searching through my mental library for scripts, remembering not to tell my entire life story or talk too much, no jumping up and down, no pacing around, no swaying back and forth or pulling at my hair, and definitely no flapping hands.

I managed it. But only just. Since going into burnout a couple of years ago (I’ll discuss burnout elsewhere), my ability to act non-autistically has been pretty poor and I’ve only been able to do so for very short periods of time without getting ill or having some sort of meltdown or shutdown. The whole carefully constructed facade that has characterised most of my life in the outside world for the last 4 decades has simply crumbled and fallen to pieces as I’ve run out of energy to maintain it. Some skills I’d previously learnt have become patchy or disappeared completely, my sensory system has gone berserk, and the amount of care I need has increased significantly.

Of course, everybody, whatever their neurology, masks to some extent. People “put on a brave face” when they have to deal with difficult situations, they dress up in uncomfortable clothes to go to formal occasions and job interviews, they walk into work on a Monday morning having had terrible weekends and sleepless nights and when asked “How are you?” respond with “Very well, thank you.” even if they feel absolutely awful and want to kick the cheery Monday morning questioner in a painful place. People with mental illnesses, chronic pain conditions, and even folk who are simply having a difficult time will experience an even greater need to put on some sort of a “public persona” at times.

So, what is so different about autistic masking? Well, I haven’t yet done enough study or research to give a definitive answer (something I’d ultimately like to do is really investigate such questions – since I discovered, nearly two years ago, that well over 90% of people on the planet experience the world differently from how I do, I’d really like to find out about their experiences, but I haven’t had the energy so far). All I can do at this point is speculate. I think, perhaps, that much of the difference is to do with a matter of extent and from the number of situations in which a person feels they need to mask in order to fit in, not to cause a fuss, or to function in the world.

Back when I was well enough to work, I “acted” at job interviews. I suspect everyone does that. But what I’d one day like to explore is the point at which most people cease to act, start to feel like they’re in some sort of “comfort zone” (a concept I’d also like to explore sometime), and when they are basically able to “let their hair down”, be themselves, and have little or no anxiety (obviously, for those who have an anxiety disorder, this will be different). From what I’ve observed of people’s behaviour (unless the whole world is performing an elaborate act and everything is fake), I suspect that many people feel free to be themselves when out having a few drinks with their friends, playing sport, at a concert, going to pick up a few bits of shopping at the supermarket, watching TV with their families, or at home with a partner. These things might be more or less enjoyable, but most folk seem to be reasonably relaxed when I’ve seen them in these situations. I am not, and, perversely, I’m probably no more likely to be stressed in a job interview than I am having a few drinks down the pub because my stress levels are so high for so much of the time that the differentials between different situations are rather small. If you’ve ever encountered me in any of these situations and I appeared relaxed, it’s because I was masking.

The situations when I can essentially be “me” occur only when there is a locked door between me and the rest of the world (and even then, there is a fear the safety might be breached). The only other person who has ever seen the full real me is my spouse, although my best friend of many decades has been close. At all other times, I am on high alert, I am stressed, I am anxious, I am acting, to a greater or lesser extent. Alcohol helps me with the act, although it’s obviously not an ideal strategy. Some autistic people, especially late diagnosed ones who have been masking to everybody for decades, cannot even be themselves with their spouses.

I find it difficult to explain this matter of extent to people – I often post things on my facebook and am greeted with a chorus of “Oh, don’t worry about that, it’s absolutely normal, everybody gets…” which I suspect is meant comfortingly, but just makes me feel very invalidated and disbelieved. Maybe my communication style is misunderstood? Maybe I’m not adequately able to explain that it’s not a question of, for example, liking or disliking supermarkets and shopping, but that the energy required to cope with the noise and the light and the people and so on is such that even a short trip out can sometimes mean I melt down at the checkout to such an extent that I have to bite my own arm and bruise it (see the picture at the top of this post, taken earlier today) in order to cope.

Of course, by the time I’m melting down at the checkout, the mask has broken. In the past I’ve been accused of being drunk, been threatened with arrest, and often simply run away from situations I couldn’t cope with. One of the reasons autistic people DO mask and hide their unconventional ways is precisely to avoid accusations of drunkenness or getting arrested or even worse. Masking can sometimes be useful and even essential. That’s something I hope to discuss in the future.

Nowadays with more knowledge and less masking I can usually manage to buy a small amount of shopping by using strategies such as wearing sunglasses and ear defenders and allowing myself to stim (more on that another time). I’m fortunate in that my circumstances generally allow me to be openly autistic and I have no problem with being so. The result is that I’m starting to learn to conserve energy where I can and to use the limited resources I do have to try to improve my quality of life, which has, over the last few decades, generally been declining rather rapidly.

I have wasted a huge amount of energy over the decades trying to live my life in order to fulfil societal expectations. Sitting still, making eye contact, sitting in a chair with my feet on the floor, wearing various sorts of clothing, speaking when it is making me feel sick, dealing with pain from lights and sounds and textures, consciously trying to work out when to talk and practising what to say, trying to maintain employment in overloading environments, smiling when it is really difficult, trying to pick out one conversation when others are happening, forcing myself to go to social events, and so on. Even the simple experiment I did when I was first investigating the “autism hypothesis” as I called it, gave an indication of just how MUCH energy masking can use.

Masking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve been unable to work it out. Even in my 20s I used to collapse with exhaustion on a regular basis. The brutal truth is that for an autistic person simply EXISTING in the world is knackering – never mind trying to hold down a job or have any sort of social life. And many of the standard recommendations for “improving mental health” (such as seeing more people in real life, spending less time on the internet, sitting still and being “calm”) simply make matters worse – solitude, rest, and stimming are much more useful tools. We need a LOT of downtime in order to recover from what, for most folk, are the ordinary things of life.

And this is at the core of the problem of masking. The perpetual acting, the perpetual stress levels on a par with what most folk would feel when at a job interview, the huge physical effort of sitting still and coping with sensory overload, and the conscious process of trying to work out how to interact with other human beings eventually takes its toll. In the short term it can lead to a meltdown (as it did with me in the supermarket the other day). In the long term it can destroy mental health and lead to autistic burnout.

Many autistics mask for years, putting in huge amounts of work to try to fit in to the world. Those of us who were diagnosed very late avoided some of the therapies that essentially force autistics to mask by using punishment when they exhibit autistic behaviours, although we were often taught to “behave properly” and the cane in the corner of the headmaster’s study was a constant threat throughout our childhoods. Some autistics become so good at masking that when they present for diagnosis they are turned away or misdiagnosed and when they tell people they are autistic they are met with disbelief and invalidation.

I’m probably one of very few late diagnosed autistics who hasn’t been told “But you don’t look autistic!” or disbelieved (in fact, when I published The Discovery most people simply said “Well, of course you’re autistic – you really didn’t know?”). My mask was evidently somewhat transparent as far as visible traits were concerned and it turned out that even with the huge effort I was making I didn’t actually succeed in fooling many people and those who knew me and knew anything much about autism (which I didn’t) weren’t surprised at all. I’d also long since accepted that I was one of society’s weirdos and grown comfortable with that (in fact, I still feel very strongly that I used to be rather special and interesting but now I’ve actually discovered I’m nothing more than a common or garden autistic)!

I’m also now beginning to realise that a huge part of MY masking was not just trying to “appear normal” but was actually trying to lead a life that was way beyond my capabilities. “Taking off the mask” for me is not just about openly stimming, wearing dark glasses and ear defenders, and allowing myself to look noticeably different from other people (I’ve actually found that bit pretty easy). It’s much more significantly for me about learning to rest, learning to pace myself, working out new ambitions, new goals, ones that might, once I’ve recovered from this burnout as far as I’m ever going to, actually be possible and within my capabilities. In short, working out how to spend my remaining time on the planet living a life that isn’t going to damage my mental health still further or cause any more huge burnouts.

That’s still very much a work in progress!

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Reactivation

This blog,
Inactive for the longest time
Since it began.
Months and months
Without a post.
Comments unmoderated
And unanswered.

Apologies.
I will get to them
When I can.

So why now?
Why am I attempting a return?

The reason odd.
Makes me uneasy.
Because I am “joining in”
With something.
Or,
At least,
I’m going to
Attempt
To join in
With something.

I have generally,
Throughout my life,
Spent more time
On the edge of communities,
Observing,
Rather than actively participating.

Even when
I’ve thrown myself wholeheartedly
Into a community of any sort
I’ve usually withdrawn
To the edge
Or even departed completely
Pretty quickly.

Likewise with the autistic community,
I maintain a position
On the edge.
Observing.
Learning.

I do not know whether this is because
I find the whole notion
Of any “community”
So very very alien
To my way of being.

Or because
Everything is still so new
And I am so very very
Underqualified
To contribute.
A beginner,
Observing those
With way more confidence
Than I possess.

Maybe.

I don’t yet know
If I will have anything worthwhile
To contribute
Or what my energy levels
Will permit me to do.

To what extent can I “join” any project
As me?
To what extent will I have to mask
My true self
To participate?

The subject matter chosen by others,
The timings chosen by others
(If I even manage to stick to them)!

(Although I don’t discount
The possibility of posts
On other subjects too)!

But,
I feel it is time to try,
Time to return,
Tentatively,
To this blog.

My life
Still very much under review
As I try to figure out
What to do with
However many years
Comprise my future.

And how to live those years
As best I can
As an authentic autistic me.

How to survive in the world
And meet basic needs,
How to build some sort of life
That provides sufficient satisfaction
And is worth the effort,

And how to do this while
Spending as little energy as possible
Pretending,
Acting,
Masking.

Blog Birthday!

A year ago today I shared the link to the first entry on this blog, having put it up the night before but not yet told anyone it existed (I wanted to “sleep on it” before sharing). My facebook memories stated that I was “really really nervous” about it and I certainly remember it feeling like a “big thing” at the time and hoping that people would treat me gently.

I didn’t actually state that I’d discovered I was autistic until the end of the third post. The first one was hastily written and rather patchy, and I wasn’t in a great place mentally at the time. I’d originally intended to wait until I had a formal diagnosis before I “went public” about being autistic, but my first assessment going so badly wrong meant that I had to change plans.

When I first set the blog up the title was simply “Finally Knowing Me” and I didn’t add the subtitle “An Autistic Life” until after I was formally diagnosed and started to become much more confident about the whole thing. I also didn’t know about tags and categories on the blog – just posting at all was a massive deal and I had to get my spouse to sit with me throughout the entire process in order to be able to do it at all.

Initially I didn’t post anything at all without him reading it first. I wasn’t confident enough. I was afraid of getting things wrong. I still am sometimes, and I want to write all sorts of posts about all sorts of things, but I also need time to absorb everything that has happened during the last 16 months – I find it hard to believe now that just 17 months ago I didn’t have the first idea that I was autistic and had very little knowledge of what autism even was. It has been a steep learning curve.

And I’m still learning. Following my diagnosis, just under 10 months ago, I became more confident about joining autistic groups online and interacting with other autistic people. Since then I’ve also been through an ADHD diagnostic process as well. There is a constant stream of new information, of new things, of articles and tweets and facebook posts and blog posts and so on. I have hundreds of links saved, so much still to learn and analyse and think about.

And I still wonder where I might fit into this world of neurodiversity, and what I might eventually contribute and how far autism will continue to be an interest I pursue in that “very interested” kind of way, and so on. For now I’m blogging less than I was, partly because I have needed a break for the sake of my health (I was beginning to become exhausted) and I’ve needed to take a step back, partly because I’ve become aware of so many more issues since I started blogging and I want to start to investigate and research more thoroughly (I need to read, I need to think, I need to learn – then I’ll be in a better position to analyse and write), and partly because I’ve been starting to rebuild my “real world” life a bit (getting back to music and running and seeing a few actual people from time to time).

I feel I have time to do some of those things now, in a way that I didn’t this time last year. I got frantic in October as I saw the number of views here plummet (as they would, since I wasn’t generating new material, and I was engaging less and less online as my health took a nosedive – I’m also a terrible publicist and not very good at publicising this blog beyond sharing each new post to facebook or twitter) but I forced myself to stop fretting. If only two people read each post then so be it, if someone “unlikes” the facebook page each time I post then so be it!

Which takes me back to a year ago. To the point where I decided that I HAD to start explaining what was going on in my life, and that I HAD to be openly autistic. And to the point where I concluded that even if nobody believed me and all my facebook friends unfriended me and dumped me for claiming the identity “autistic” for myself without official permission, then that was the way it would have to be.

That was the point at which I could no longer pretend. I saw it as a two way choice – either live openly and freely as an autistic person (and probably go on incessantly about it for a while), or kill myself. The former risked me ending up getting laughed at or disbelieved or alienated (all of which were potentially reversible), the latter ended up with me being dead (which, of course, is irreversible). And so this blog was started, as it was the best way I could think of of making the information available to people.

As it turned out I wasn’t disbelieved or anything else, rather the opposite. And this blog has since grown into something I’d never have expected a year ago. I wrote 170 posts in the first year of its existence (this is the 171st), which I’d never have imagined when I started out.

Who knows where it goes from here. I know it’s not finished yet. I know there’s more I want to do. I know I need to give my head processing time and that life continues to change. I know there is SO much more to learn, and that some of the issues surrounding autism and being autistic are complicated and that many are controversial. I don’t cope well with conflict, which means that I have to consider how “activist” I can be before it becomes seriously detrimental to my mental health.

I know that lots of people also produce vlogs and that accessing information presented only in speech is exhausting for me because where reading is something that takes very little processing for me, speech takes a great deal and I tend to save my “speech processing spoons” for real life interactions, which is when I need them most. Perhaps as I continue to recover from burnout this will improve.

My own life is also still very chaotic. We live in chaos, in a constant state of mental fragility, on a financial knife edge, everything precarious and uncertain and unstable. I’d like to use some of my energy to try to improve that a little if I can. The burnout of 2016 meant my life almost completely fell apart – I’m still picking up the pieces and trying to stick them back together in some sort of sensible order. It all takes time and energy.

My spouse assures me that it will all be sorted eventually (he’s an optimistic type), and also reminds me that as far as autism and autism advocacy and so on is concerned, it’s still really early days for me. I look at the work of others and feel very far behind, but then I realise they’re often months or years further along their own journeys and I’m still really new to all this.

To those of you still reading, and particularly those who’ve been reading from the beginning, huge thanks. Sending virtual first birthday cake to you all!

Flippant Suggestion

Very early on in the process of discovering I was autistic, sometime in the autumn of 2016, my husband and I had a brief and frivolous discussion. We spent a short while pondering what explanations would have been proposed for my behaviour as a child if I’d grown up in a different decade?

My behaviour at primary school was clearly somewhat different from that of most kids. I spent a lot of time on report, I got into trouble a lot, and I found most of the experience of going to school as a young child incredibly difficult. I evidently had some academic ability and I was a prolific reader, and I sang and played recorders and clarinet in school concerts, but I fell a long way short when it came to actually completing written work, even maths, which I struggled at until my mid-teens (this will surprise people who know me today), and my behaviour was way off what was expected.

At the time, the school did what they could, as I described in Head’s Office, and tried to find out why I wasn’t behaving “correctly” or achieving what I should have been in my written work. However, because it was the 1970s and they were primary school teachers in an ordinary primary school, no conclusion was ever reached, and I just eventually muddled through somehow, using my learning ability to adapt as best I could and to try to work out what I should actually do.

So, we knew what had happened in my real life, in the life where I was a primary school student in the 1970s. And, as it became obvious that I was autistic and that I had shown a large number of autistic traits right from being a baby, and as we discovered that my nursery teacher had remarked on my behaviour when I was 3, and my primary teacher had done likewise when I was 4, we concluded that it was likely I would have been given an autism diagnosis as a young child had I been 40 years younger. This was eventually confirmed by the person who did my autism assessment – she was clear that there was enough information about the early part of my life that I would, in the present day, have been diagnosed at around 4 years old, as I described in Circles.

However, that left quite a large gap. 40 years is a long time. Was there any sort of intermediate stage? What would have been the analysis of my school behaviour if I’d been, say 20 years younger? A halfway point between the 1970s and the 2010s? What would have happened to me if I’d been a child in the 1990s? Obviously, things would have moved on somewhat from the 1970s. I would still have been very unlikely to be identified as autistic, but we speculated, very briefly and slightly flippantly, what MIGHT have happened if I’d shown the same behavioural traits that I did in the 1970s but viewed through the eyes of 1990s adults.

We were, of course, adults ourselves in the 1990s, though mainly students and with no dealings with small children of any description. I eventually became a schoolteacher, but that was towards the end of the decade and I was a secondary teacher – I only gained limited experience (from occasional supply work) of primary age children and how people reacted to them in the early 2000s. But we did watch the news. We did follow current affairs. And, having the sort of memory that we both have, we both clearly remember stories about the behaviour of small children and the rise of a particular diagnosis during the 1990s.

“I might have ended up as one of those ‘Ritalin kids,’” I quipped to my husband! We both laughed! “Yes, me too!” he responded. We laughed again. The throwaway remark didn’t spark any further discussion. We were only bantering, wondering, throwing ideas around, and eventually we carried on with the serious business of gathering information for an autism assessment.

I didn’t think about that conversation again for a long time. The question of what would have happened to me as a child in the 1990s was just a little game of “What If?” and since we knew what HAD happened in the 1970s and we were now certain that we had found that my being autistic was the reason for my behaviour as a child, we had no reason to pursue anything else further. We had the answer – I was autistic and we were absolutely focused on getting me the formal autism diagnosis that I so much needed, and, at the time I spent most of my life buried in autism books and blogs – like a true autistic with a new shiny interest I really didn’t care much to think about anything else in life except autism!

I was also going through that really “heady” early phase of discovery, where, after decades, I was suddenly discovering so many reasons for so many things that had always been part of my life. I was reading whole books in one sitting, taking in vast amounts of information, and learning as much as I could about autism and being autistic and the ways in which being autistic influenced my life. I was still in that initial state of shock, excitement, relief, and so on and my mind was going at a million miles an hour.

It wasn’t until I finally received my autism diagnosis at the end of February 2017 that we finally stopped gathering information about my autistic traits and I started to relax a bit and gained the confidence to engage properly with the online autistic community and to start to learn about the whole area of neurodiversity and how it impacted on my life. Getting my diagnosis freed me to start looking outwards, and forwards, rather than backwards and inwards. I also started trying to rebuild my life and to try to find solutions for some of the difficulties that I was still experiencing.

And, in the usual way, I did so by research and by reading and by learning.

There was still a lot to learn!

October

October has been a tricky month. My blogging abilities finally ran out. My spoon rations finally fell below the numbers required to maintain this blog. I was forced to take a break and to deal with life and there was no energy left for blogging.

I am still recovering from what has been a tough few months. My head is still only sporadically clear enough to achieve very much of anything. Depression is threatening. I am trying to seek help, which is proving exhausting, triggering, and difficult. I have finally reached the point where my head needs a pause to assimilate all that I have learnt about autism in the last year and a bit. Processing time. A reboot.

I feel I’m failing here and should be able to hold it together better – this is probably a hang up from decades of being told I can do anything and I’m strong and capable. The truth is that I am not, and I currently don’t have the energy to do more than crawl out of bed some days. I look at the blank days on the blog calendar but I am mostly powerless to fill them, or even to advertise old posts. It feels like negative achievement, like going backwards. My energy levels are very variable though. I need to focus on self care and getting through the days.

There is a great chaos in my mind of things that I want to discuss, things that I want to blog about, but I currently can’t. There have been successes (playing music and returning to running half marathon distance (slowly)), but these things use vast amounts of energy for me and I have not had adequate recovery time. I’ve also been in touch with family members, seen my mother, communicated with my father who is in the midst of chemotherapy, been out and about for coffee and shopping a bit more, and been trying sometimes to take pressure off my husband who is still working seven days a week. This all takes energy.

Going back to the mental health services to ask for help has proved triggering and difficult and I still don’t know where it will lead. I’m certain that in addition to being autistic I also have ADHD, but the process of obtaining a diagnosis is not going smoothly thus far. I still have no access to appropriate counselling or medication – the process of trying to get either is draining in itself.

Social media has not felt as safe and supportive as it sometimes does – I sent out a call for help on facebook and received some hurtful and gaslighting comments from people I counted as friends. One is now blocked, several I have filtered, some might remain so, some will not but will need explanation I’m not currently able to give. Over two weeks after a huge meltdown I am only just returning gently. The bruises I inflicted on myself that night are almost healed. I will sort things when I have the energy, but that is not now. I’m finding twitter almost impossible, the back and forth nature of it too much like “conversation”, which I find much harder than simply typing a paragraph. The short nature of tweets breaks up my thoughts and I can’t focus on threads and so on. I have, however, taken to Instagram – the visual nature of photographs is working better for me at the moment.

I am conscious that I still need to respond to comments here, some of them wonderful, thank you. There are many things to which I want to respond, but simply can’t yet. I will as soon as I’m able, I promise. I’m missing discussion on Chris Packham’s TV programme on autism because my brain won’t process what I want to say. I have so many thoughts, but I can’t currently form them into anything I can publish. I also had many and various thoughts about the “me too” hashtag on social media, thoughts and feelings that kept me from participating in the whole thing. And I’ve had times of serious gender dysphoria in the last couple of months that I’ve had to find ways of dealing with. There are so many complex issues swirling around in my head and I’m trying to sort them out as best I can.

I feel like I am missing the Zeitgeist somewhat. There are lots of posts going round about autistic hyperempaths, to which I can’t relate because empathy doesn’t come naturally to me and I spend a lot of my life working really hard to try to understand feelings (both my own and other people’s). I want to explore the ways in which I fit autistic stereotypes and the ways in which I don’t. But my brain won’t currently cooperate. There are so many things to write about, so many. So much to explain that I want to explain as fully as I can. And so much of it is triggering and difficult, and I fear conflict, which makes it even harder.

I need time. I need space. I need to organise my thoughts. I also need to organise my life – I have now landed us with a summons for non-payment of council tax, not even because I didn’t have the money to pay the month’s instalment, but because my executive functioning was so poor that I couldn’t make my head work to do the job. My spouse has also had to type e-mail responses for me to copy and paste and has had to complete student loan deferrals and so on because I have simply been mentally paralysed by such tasks.

There is much still to discuss. There are many things I want to blog about. I’m trying to make notes when I can. I’m trying to think of ways of explaining things to people. I’m trying to work out where things go from here.

But I’m also trying to hold some semblance of life together. Things are difficult right now and I don’t know when this difficulty will ease.

I will return when I can.

Sheet Problems

Many of our sheets are
Still missing after the move
Many are old
And wearing out…

So I bought a new one.

I washed it
As I do with all new things
Because new things
Never feel right
Or smell right
Unless they have been
Washed in the usual stuff

(My mother once washed
My bedding
In a different sort
Of powder
When I was a child
And I couldn’t sleep
Because it smelled
So wrong).

I put the new sheet
Onto our bed
Yesterday.
I knew it was wrong
The instant I got into bed…

Scratch scratch scratch.

Scratch scratch scratch.

Scratch scratch scratch.

I feel now
As though I have spent the night
Sleeping on sandpaper.
I feel as though my skin
Must be red raw
From the experience.

I know it isn’t,
Logically.
And, as always,
Any outside observer
Would simply tell me
They couldn’t see anything
And not understand
The problem.

(My spouse has had
Years of me complaining
About wrinkles
In the sheets
And things not feeling
“Right”
While he is unable
To feel what is wrong).

So I am about to get up
Much earlier than usual
Because I cannot lie
On this sandpaper bed
Any longer.

And I will be changing the sheet
Again.
More energy used.
More washing.
Another failed thing
To add to the detritus
In our flat
Another waste of money
I don’t have.
Something else
I will struggle to throw away
Because I will feel sorry for it
And guilty that I didn’t love it.

Maybe the animals will enjoy it as bedding?

But, as my spouse said to me
At least we now know
There’s a reason that I
Complain about the sheets.

So that’s something.

But I still need a new sheet.

Which means shopping
In shops
Which is hard.
And the sheets are all in packets
So I can’t feel them first.

Or buying online
Where I also have to guess
Whether the sheet
Will be a good one.

(And, of course,
The good ones are more likely
To be the expensive ones
Which I can’t afford).

You’d think
That buying a new sheet
Would be something
Quite simple to do.

Not in my world it isn’t!

Also Being Autistic

Bizarrely, the point made in the last post, that I find it hard to imagine how life could be good again when it’s bad and hard to imagine how it could be bad again when it’s good, was proven when I finally clicked publish on that post and immediately felt a weird sense of dishonesty.

I wrote the post a few nights ago, in one of the good phases, put it onto the blog site in draft, and numbered it to be posted next. But by the time publishing time came, I was struggling again, and it felt a little weird to post something so unrepresentative of my current state.

I also suddenly worried that I’d equated lack of social imagination with lack of empathy. If I did, then I didn’t mean to – I’m still trying to figure all this out and this blog is a learning and analysing experience for me as well as something for others to read if they wish to. I still need to find proper words to describe all these things better. I still need to organise and structure my thoughts better, and I’d like very much to be able to explain all these terms properly.

This constant back and forth, constant switching between feeling wonderfully neurodivergent and fabulous and relieved to have discovered who I really am, and feeling frustrated at how limited my life is and how difficult I find things, is still characterising my life quite strongly at the moment. I described some of the effects this has on me in Oscillating, and it continues to be true. I suspect it might continue to be true for some time to come.

The warm fuzzy feelings in Being Autistic are real. I AM happy to have discovered my neurology and to have solved so many mysteries from my life. I have no issues with people thinking I’m strange, or with stimming in public, or with stigma from anyone immediately around me (I realise this makes me massively privileged – when my friends see me flapping my hands or rocking back and forth they don’t tell me to stop, they just check with me that it isn’t an indication that I’m in any sort of distress). In many ways it’s all good. Lovely stuff – stick on the dark glasses and ear defenders, take my phone everywhere in case my speech fails, carry on with life. Proud autistic stuff, rainbow infinity symbols, stim toys, clothes without labels, and not a worry about what society thinks. Even before I was a nonbinary autistic I was an AFAB who hadn’t worn make-up or a bra for over 20 years and was happy existing in socks and sandals without caring what others thought. I’ve been miles away from many societal “norms” for decades, and I have enough confidence not to worry about that most of the time. If people like me and want to be friends with me on my terms, great, if they don’t, then no big deal. Now I have a reason to explain just why I fail to comprehend society’s codes I feel even more justified in being myself and not worrying about it. I am fully “out” as autistic to anyone who cares to know (and probably people who don’t too) and absolutely happy with that (to be honest, anyone who knows anything about autism can figure it out in about a minute anyway if they meet me – I do present as stereotypically autistic in many ways and even if I try really hard to mask, at the moment I’ll last only about an hour before I start to collapse or get sick). Additionally, I can take the pressure off myself to be “strong” so in many ways it’s even better than before – I can ditch the self-blame, I can relax, I can just enjoy being me.

However, there is a flip side. I am still coming to terms with the fact that I am not the Strong Woman of my mask. My day to day existence is, for the most part, relatively low quality. Most days I spend between 14 and 24 hours on my own in a grubby, overcrowded, dark flat, trying to recover from the days and times when I CAN get out and do things. I look at my former colleagues from college days, many of whom have houses, children, and jobs, and I have none of those things. Certainly my inability to sustain employment is down to me being autistic (and, maybe even more so to remaining undiagnosed for 45 years – I never asked for adaptions at work because I didn’t know I needed them and I lost every career and job I ever had), and my consequent large debts and relatively poor living conditions are a result of that. I read memes that tell me if I want something I have to work for it. I have done nothing less than work as hard as I possibly can all my life and the things I wanted didn’t come – those memes sound like cruel lies to me. I spent a pleasant evening socialising and drinking with friends a couple of weeks ago – the resulting overload caused an entire night of meltdowns and panic attacks and suicidal thoughts. Everyone else went to bed and woke up with a slight hangover. Every so often I ask “Why me?” and then I feel guilty because I am betraying the neurodivergence movement and I become frightened of those autistics who tell me that autism is not a disability, just a difference, but I am so very disabled by it so very often – no work, no money, some days I am a 46-year-old who cannot even get myself a hot drink or work out how to get enough food to sustain me or even manage to get dressed properly. And not all of this is “society’s fault”, it is just the way that life is and is often a result of simple practicalities. I am actually surrounded by non-autistic people who are doing their absolute damndest to understand me and to help me and to compensate at every turn for my disabilities – they are brilliant and loving and patient and I am very very lucky with them, but I am still struggling. And at those times I wish I was “normal” (yes, yes, yes, I know the old cliché that there “is no normal” etc etc, which, to be honest, to those of us who are so far up one end of the bell curve that we cannot even see the middle of it, sounds a bit trite), at those times I wish I could go to work for a week (even part-time) and go down the pub for a few hours on Friday night and enjoy a weekend with the family, which I can’t. I wish my gender was one that was recognised and understood by everyone (that is society’s fault), but it isn’t. That is the sort of “normal” I wish for…

I could go on. There is still much to explore. There are two sides to this, the dark side, where I just want all this to go away and to live a regular life (and, yes, I use the word “regular” advisedly, as I do the word “normal”), and the wonderful quirky side where I can finally be me and enjoy it and live a life that is right for me. Practicalities constantly intrude on me “being myself” because I have to eat and drink to stay well, I have to find enough money to survive, and unless I never go anywhere or do anything ever again I have to interact with other human beings in a way that often makes me very uncomfortable. To an extent, there is a part of me that needs some interaction too – less than most people I suspect, but not none at all.

I suspect these thoughts will continue for some time. I am still new to all this, only just over a year since I discovered I was autistic. As far as being knowingly autistic is concerned I’m only just learning to walk, at age 46, after over 4 decades of trying to be something else and failing at it. I’m also still very burnt out and still trying to find help, still waiting for referrals to services, still trying to discover if there is any medication of any description that might help (I can’t take many of the things that might help because of co-occurring conditions). Perhaps things will improve as time goes on – it’s still really really early days for all this stuff.

It’s also a big switch, a total change in life parameters, and I suspect I’m still fucking things up quite a lot. Still not explaining myself right – remember, I’m also very alexithymic, which doesn’t help. I’m still working it all out. It’s all still evolving, much like this entire post evolved out of a simple feeling that I should add a short explanation about the previous blog post.

Strange times.

NOTE: Since I wrote the words above, I feel different again. At the time I intended to post Being Autistic, I was in such poor shape that I couldn’t even turn the computer on to press publish and I had to do it the next day. I’m actually in better shape again now, happier, more relaxed. That’s how quickly things keep shifting, how fast the oscillations sometimes are. But I won’t write yet another post about that at the moment because this cycle could go on for a very long time!