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!

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.

First Anniversary

I’ve never been very good at “occasions” and I’ve written before about some of my problems with various Special Days and how I deal with them.

A year ago as I type these words I was nearing the end of an assessment appointment that lasted almost five hours total. I’d spent months in a state of high stress, I was still in a state of shock about all that had happened, I’d done almost nothing but research autism and find out what it was and how it might not or not relate to my own life, and I’d sent over 120 pages of evidence and numerous forms and questionnaires to the two people who were now sitting opposite me.

Once the appointment finished the Wonderspouse and I went for a walk round the block as we’d had to on several occasions during the appointment since I was continually getting overloaded and we didn’t want a repeat of the meltdown and self-injury that had occurred during my first failed autism assessment. The main assessor was skilful enough to recognize when my levels of stimming were at the point where I needed a break and breaks had also been planned into the appointment at the start.

When we returned for the last time to the building, it was to hear the verdict of the assessors, which, as I reported in An Announcement, was that it was absolutely clear that I was autistic. It became obvious from the two follow-up appointments that my test scores, my interactions, my behaviour, my speech, and (completely unknown to me previously, but obvious to someone who knew what they were looking for) my facial expressions and gestures were all well within the criteria for an autism diagnosis.

The initial feeling was overwhelming relief. The quest for a diagnosis was over. I could stop now. The assessor asked me how I felt, I said I felt relieved. I was told this was a very common reaction to diagnosis, particularly late diagnosis.

I then wanted to check that that was actually it, the point of diagnosis. That day. That I wouldn’t have to wait for a letter or anything before it was official. Was I officially autistic straight away or did becoming officially autistic only start once the paperwork was sorted? I was assured that my diagnosis was effective immediately. I made them tell the Wonderspouse again just in case my brain was playing weird tricks on me and I woke up and asked if it had all been a weird dream.

Then I expressed considerable pleasure at the date. 20th February, 20-02. Zeroes, even numbers, THE only even prime number, and wonderful wonderful symmetry. Had it been in 2002 (the year we got married) it would have been even more perfect, but 20-02 on its own gives my head little happy tingles, like mini stimmy stars sparkling in a bit of my brain, so I was happy with that. I rhapsodised for a few moments about the date. The assessors laughed.

It was then decided that I was exhausted and it was time to go home. I hugged both assessors, probably too hard since that is my tendency. Having since learnt about sensory avoiding autistics who dislike hugs as distinct from sensory seeking ones (like me) who probably like them rather more than most, I now wonder what proportions of various reactions autism assessors get at such moments!

We departed and went for another short walk to calm down before driving home. We also called at a supermarket to get me a calorific drink because I’d hardly had anything to eat so it was a good idea to get some nutrition in me before I drove us home. I also bought a bottle of Oyster Bay Sauvignon Blanc, which I’d drunk with my best mate a few weeks earlier. He’d told me to get myself a bottle to celebrate or drown my sorrows as appropriate after my assessment. So I did.

And all that was a year ago.

The first anniversary of my diagnosis has been looming for a few weeks now. I’ve pondered what I should do about it. I’m rubbish with anniversaries. I’m rubbish with birthdays. I’m rubbish with all that sort of thing.

I thought I should probably have a cake or something. I should bake a wonderful crazy cake and decorate it with gold icing and rainbow infinity pieces made out of food colouring and magic, with a single candle in the middle, and the date, and a whole load of autistic pride type flourishes. Then I remembered that I can’t bake. And I’m not really eating much sweet food at the moment. And the Wonderspouse has a very limited desire for cake. And even 37 rats (our current number) would struggle to get through such a cake and I’m not actually in the business of making the rats ill by feeding them on nothing but sugar for a week. So no cake.

No party either. We almost never have people round to the flat. There is no space. Other people in the flat make the Wonderspouse so unbearably anxious that if anyone does come round (happens about once every two years) he simply goes out. And there’s nowhere for anyone to sit either, not even floor space. It’s crowded enough with two of us.

And so I find myself in the weird situation of today, which is a really big important day for me, with no way to celebrate it. I’ll be on my own until late tonight because the Wonderspouse is at a course. I’m struggling with eating again at the moment, so food beyond the normal isn’t really a thing. I do have a nice bath bomb for a bath later – one with a lovely smell and stimmy sparkles that I can swish around and watch until the water goes cold.

I’ve also made myself return to this blog. I know I’m not here much at the moment. The pause is still intended to be temporary, but I’m finding words harder to write at the moment and I’m also using energy to try to rebuild some sort of offline life that will maybe eventually make me feel that it’s worth hanging around on the planet a little longer. I’ve returned as seriously as I can to running, which is taking a huge chunk of my energy – coping with the sensory demands of being outdoors for long spells is really sapping my strength. I’ve also started to say “yes” to a few more music gigs. And there are other ordinary life issues to deal with – trying to sort out a hacked credit card when I’m unable to speak to the bank on the telephone is proving extremely challenging, we’ve had problems with our internet connection, and I’m using huge amounts of energy to communicate with the garage in an attempt to sort the work needed to get my elderly car through its MOT.

Furthermore, I’m still trying to get the correct dose sorted for my ADHD medication. It’s not clear what that will be yet. I’m also somewhat low and constantly trying not to tip over into a depressive episode. And I’m also learning. The autistic world turns out to be a complicated place, with many many different experiences, and I need to watch for a bit, and learn, and read.

Ironically, a year on from diagnosis, I’m now significantly much LESS confident about writing here. I need more time, more space. My head is not in a very good place at the moment in very many ways. Trying to do all that I’m now doing is also leading to more meltdowns, more shutdowns, and less functionality. I don’t know what more I can do other than wait.

So it’s a really big significant day. And, as with all such days, I feel a pressure to celebrate, but I don’t know how, and I really just want it to be a normal day, which it basically is. Maybe I’m simply still not yet recovered enough for such things. I still need more time, more space. Two years ago I barely knew what autism was. I certainly had not the first clue that I was autistic. One year ago today I was formally diagnosed autistic. These are short timescales. I’m still processing.

I do have a bottle of Oyster Bay Sauvignon Blanc in the fridge for later though.

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!