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!

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!

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.

Another Step

Having admitted to myself that I was autistic, and having already approached the doctor to be referred for diagnosis, I knew there was something else important that I had to do. I had to let my family know what I’d discovered, and the obvious place to start with that was to call my mother.

I recorded my feelings about doing this:

Deep deep breaths. That was a biggie. Told my mother.

And then noted some of the things that she had immediately said when I’d told her that I would need information about my early childhood and please could she start thinking whether there were any incidents that occurred in my early life that she could remember, or any ways in which I differed from my brother (who is not autistic) when we were young, and could she possibly just start thinking back to the time of my early childhood and triggering memories because the assessment people would want to know.

And without even a pause for breath, my mother remembered being summoned to my primary school (as I’ve described in Circles) when I was 4 years old. She recalled me learning to read at age 3. She recalled my nursery teacher commenting on my behaviour at nursery. She recalled something about a hearing test at 7 months that went wrong because I didn’t behave like a 7 month old should and the person administering the test telling her off about it. She told me how I didn’t respond to spoken words as a baby, only to singing, and how I hardly slept and constantly fidgeted in my pram.

And all this was instantaneous recall, the moment I asked, with no pause for thought. Memories from over 40 years ago. Little things, none of which seemed significant at the time, and none of which was ever followed up (because it was the 1970s and I seemed healthy as far as anyone could tell and when my mother asked what babies were supposed to do (I was the first child and my parents were young and inexperienced) she was told that all babies develop in their own ways so not to worry about anything), all started to indicate that my development when I was very young was, in fact, rather a long way from what would be considered “normal” by most people.

This first conversation was, it turned out, only the “tip of the iceberg” as far as my childhood was concerned. There were further pieces of information to follow, and I’m still, really, in the process of absorbing them all and trying to go through the questionnaires that we did as part of the assessment process. Maybe I’ll manage to write about it all thoroughly at some point, but that point is not yet.

My instant reaction to these revelations was to make a bunch of hashtags:

#theplotthickens
#wouldseemivebeencausingtroubleforalongtime
#thiswholethingisratherextraordinary
#ialwaysknewiwasabitunusualbutbloominheck

I subsequently went through a phase of finding these discoveries about my early life really rather odd and weird, and in many ways, traumatic. It was strange to think that there were things I’d never have discovered about myself and my early life if I hadn’t been going for an autism diagnosis. My husband and I had started to document my own memories of childhood a couple of weeks earlier, but this phone call to my mother took things to a whole new level, because I started to discover things that weren’t part of my existing life narrative.

Furthermore, since I was never able to have any children, I didn’t know whether the things my mother was telling me about my early life had any resemblance to any sort of “normal” childhood development or not, and I ended up having to do a lot of really triggering research to find out, research that brought back horrible memories of infertility clinics and pain and heartbreak and failure, so it turned out to be a triggering and difficult experience from that point of view too.

And, of course, my own memories of childhood had to be activated. And many of them weren’t that much fun either – I was bullied consistently through school and even when teachers tried to find out why things weren’t as they should have been, they weren’t able to come up with any answers, despite sometimes trying, as I described in Head’s Office.

These things are things I still haven’t yet worked through, things that still upset me, things that I know would have been picked up if I was a child today. I can’t help feeling that had I known that I really was different when I was growing up, not just naughty, that I would have felt less bad, been less self-blaming, and not become the suicidal burnt out adult I now am. I’m still not really in a place where I can consider all the things I want to consider – I have to do it a bit at a time, because it is difficult.

My mother, somewhat comfortingly, said to me a few months after that first conversation, that she wishes she had a time machine. Of course, there are so many factors at play that it’s impossible to say that changing one thing would have produced this result or that result (I KNOW all the stuff about autistic kids being “written off” and told they’d never be able to get anywhere in life – I had exactly the OPPOSITE problem and was consistently told how bright I was and given massive expectations accordingly, expectations that I could never fulfill so I was doomed to failure). However, maybe I’d not have been chastised for meltdowns, not been forced to wear wool polo necks which hurt me and so on, and not have learnt, through my early years, to behave and to internalise everything because I was frightened of the consequences and the punishments.

Furthermore, because I learnt fast and turned out to be academically able, by the time I was at secondary school exam stage nobody worried about me. I was succeeding academically, top grades of my year, therefore I must be happy. What nobody knew is that I hardly bothered revising for my O-levels because I assumed I’d be dead by the time the results came out. I didn’t tell anyone because I’d learnt by then that you just didn’t talk about that sort of thing. You worked hard, you behaved, you churned out the exam results, and everyone was happy. It was all part of the act.

Except that the act had a massive cost for me – the thing that had eventually made me as well-behaved a child as I was able to be, turned me into a mentally ill twentysomething and a burnt out thirtysomething. And nobody really knew why until I was in my mid forties.

Getting an autism diagnosis late in life is a weird thing. It opens all sorts of cans of worms that have been sealed shut for decades. I had long since closed the door on my childhood, and on everything to do with children in general, sealed away in a place in my head marked “Do not open – just move on with life!” but I was forced to reopen the door, to take the cans off the shelves, and to let the worms loose all over the place. It was part of the assessment, and it is part of coming to terms with why my life has turned out as it has. It’s something that needs to be addressed as best I can in order to move on and try to build some sort of future with whatever life I have left. I’m not sure it was something I particularly wanted to be doing at this point in my life – having just moved away from all things child-related after my own failure to have any, the last thing I needed was to go back to my own early life – but it turned out to be necessary, and perhaps going through the painful stuff now means that there will be less of it buried and I’ll eventually be less mentally ill as a result, more at peace with it all, and maybe, possibly, more at peace with my own childlessness and consequent response to children, which is something I still struggle with terribly.

And, as I have read in so many places and am experiencing for myself, getting an autism diagnosis late in life is not only about the future, and learning how to live from now on, but also about reframing past experiences, reviewing all of life that has gone before, looking back at so many times when things have gone wrong, or been inexplicable, and looking at them from an autistic perspective. It’s part of the process of making sense of life, and, of course, the later the diagnosis, the more of life there is to go through.

And in my case, it’s not just me who is reframing past events. Many of my friends have now made sense of experiences they’ve had with me over the years. My husband now understands things that have long been slight oddities in our marriage. And my family are trying to understand the whole thing.

I made the first phone call to my mother a year ago today. It had taken nearly 45 years for her to find out why her non-sleeping fidgety baby had messed up a hearing test at 7 months old. As soon as I asked the right questions and explained what I’d recently discovered, it became obvious.

I didn’t even know I’d had a hearing test at 7 months until I started gathering information for an autism assessment!

How To Be

I’m aware that this blog is becoming a bit erratic. There is still the story of my diagnosis to complete. There are hanging bits of part stories about discovering I was autistic. There are still random bits of semi-poems intermingling with journal entries. And I have yet to write about significant topics in a way that I eventually hope will be properly useful to others. It’s all a bit of a mess really. And I still have comments to respond to, and so many times where I’ve stated that I need to write a whole blog post about something and haven’t yet. But I can only do what I can do. My spoons are often somewhat limited and I work pretty much to capacity at all times, so I can’t do more.

And that’s just on the actual blog. Inside my head it’s even worse. There are fragments of posts, ideas, notions, concepts and so on. I have note after note after note on my phone, half-typed half thoughts about various things. It feels like I need a year or more to go through them all and construct coherent writings from them. There is so much to do, I’m so behind with things that I need to do to keep my life just about ticking over. And there never seems to be enough time, and by time I mean the sort of time where I’m functional enough to achieve things.

Maybe, however, this erratic situation, this state of chaos, is actually reflective of my own state of mind and my own current situation, which is also erratic and chaotic. Over a period of 24 hours last week I went from hating being me and not wanting to exist, to being content and still feeling this huge relief of realising who I am. I am still struggling to speak or get out of bed some days, but can be quite capable on others. And I have also realised over the last couple of weeks, that when I am out of the flat, in public, with other people, I have a situation that is still not resolved, and not even close to being resolved.

I do not know How To Be.

The problem is this:

I have always been regarded as somewhat “eccentric”, and even, maybe, some would say, a bit weird. That’s OK, I’m cool with that, it’s not a problem to me, I’ve dealt with it long since. After over 4 decades of being a bit on the interesting side of things I’m pretty used to it. I got really upset about being bullied and so on at school until I was around 15, but by then I’d largely learnt that it was just part of life and although it wasn’t much fun, I’d learnt to act “normal enough” to survive out in the world. I’d learnt to live with it, to cope.

The problem, of course, was that in learning to act “normal enough” and in learning to cope, what I’d actually done was literally learnt to act. I’d built a mask, and a pretty effective one at that. And the mask that I built was one of a rather strong and confident person. I wasn’t the stereotypical autistic girl “flying under the radar” by sitting quietly in the corner in the class, unnoticed. I wasn’t failing exams or dropping out of school. I was strong-willed, brash, and externally confident (even internally confident to an extent, because however much of a failure I was at friendship and sport and so on, I could learn things and pass exams reasonably easily, so that was what I did). I was told that I was capable and could achieve great things (largely because of the exam results and my capacity for learning things), and so the mask that I built was one of a high-achieving confident young woman.

However, this mask came at a price, and that price was my mental health. Constantly “being strong” and “achieving” in the way that I did in my early 20s was breaking me inside, and by the time I got to my late 20s I was very very ill indeed, heading for the serious episode of burnout at around age 30, from which I never really recovered, and my life was falling apart.

Up until last year I continued with the masking process to a considerable extent while out in the world. I continued to believe that the strong me was the real me, and once I’d recovered from being mentally ill (I really believed I’d get better at some stage) I’d be back to full strength. However, that continual masking was breaking me yet again, and, perhaps inevitably, I fell apart again completely, in the summer of 2016. And by that time the world had caught up sufficiently for the events to occur that eventually led to me being diagnosed autistic.

And, because of the sort of person I am, having discovered I’m autistic I’m determined to BE autistic. I don’t consider it something to hide away, I don’t consider it something to try not to be. It’s a huge part of my identity, and after over 4 decades being “somebody else”, the relief at being a more authentic version of me is huge. I suddenly realise it’s OK to allow myself to eat the same thing day after day after day if it makes me feel better, I’m allowed to stop forcing myself to take part in group conversations until I’m so sick I’m at the point of collapse, I can stim and fiddle with things and know it’s not me being wilfully annoying but is just part of my neurology, and I’m finally learning how to be myself after decades of trying to be the person society expected me to be and failing at it.

Which is all very well when I’m at home, or with tolerant friends or someone who can care for me and explain. And is absolutely fine when I’m in safe environments and have enough spoons to take care of myself. All very lovely – in theory all I need to do now is to be my fabulous autistic neurodivergent hand-flappy rocking-back-and-forth sunglasses-wearing eye-contact-no-longer tell-it-like-it-is self! Neurology explains everything, no more need for acting! Yippeeeee!

However, I’m a grown up person. I have to live in the world. I have to go out to shops to buy food. I have to be able to deal with other human beings if I want a life beyond the television and the sofa. I want to participate in activities that will be full of neurotypical folk who think it’s great to have a spontaneous chat about nothing at all and that such a thing takes no effort, who sit and stand too close to me for comfort, who are irritated by my stimming, who will expect me to use polite social niceties that mean something to them, who don’t even know what being autistic means, and who mistake my lack of social finesse, my sometimes inability to speak, my lack of eye contact, and so on, for rudeness or disrespect or similar, which, of course, it isn’t, it’s just that my natural way of being is different from theirs.

And so I come up with a dilemma. As I’m starting to emerge from burnout and beginning to go out into the world again a bit more, I’m finding that there are times I slip back into the old mask, which is probably inevitable after 4 decades of living that way and it becoming such a practised part of my act. It’s very obvious when I do though, because I start to feel very ill and bad rather quickly and I don’t have the stamina to maintain it for very long. There are also times when I catch myself doing something really obviously autistic (like losing speech or flapping my hands or something) and realise that if something went wrong or somebody challenged me, I’d be in deep trouble without being able to explain properly what was going on and with no carer on hand to help. And how DO you deal with a stranger who is standing so close to you that their “person vibes” are making you feel ill, when they don’t even understand the concept of “person vibes” (which, incidentally, is a term I just invented now)? They think you’re being awkward, but you’re not, it’s just that you can’t cope with that much person that close in that time and place.

I have no answers at this stage. But I’m coming up against the same problem that I read about from the parents of autistic children, but for myself, not a child. I’ve seen discussions about the extent to which autistic children should be pushed and made resilient and able to cope in life, and the extent to which they should be encouraged to be their fully autistic selves with all that that entails. I’m now considering to what extent I need to continue to use the mask I’ve developed in order to survive in the world and to what extent I can allow all my autistic traits and tendencies to dominate. On the one hand, trying to make autistic people “look” neurotypical can be massively damaging to mental health (don’t I know this from bitter experience), and how well we “fit in” or “look normal” is no measure of success in an autistic life because it denies who we are and can cause huge burnouts, but on the other hand we have to survive in the world somehow and that needs a certain amount of resilience and coping ability, especially given how little support there is in most societies for autistic people, particularly those of us who are adults. Add on to that the complications of late diagnosis and the concomitant identity crisis that arises from this huge change in life, and it’s easy to see how difficult it is to know how to proceed from here.

And this is not just about societal attitudes, but about practical survival and physical health. I’m not at the stage where if the supermarket discontinues my usual food that I don’t eat at all, but I did sit and cry for half an hour the other morning and declared that I wouldn’t eat or drink that day because we’d run out of the milkshake that I usually have when I first get up. My autistic brain said NO in big shouty letters, and I had to use my rational “learning” brain to argue with it. I had to allow myself to recover from what was basically a mini-meltdown over a milkshake, and then gently persuade myself that I was going to eat and drink and it would be OK to drink something different until my husband could get to the right shop to get the right sort of milkshake. This all takes energy (and, in my case, a very understanding husband), and it’s nobody’s fault – it’s just the way my brain works being at odds with what I know to be good for my body and overall health!

And going out into the world and coping with everything that the external world throws at me takes even more energy, even when people are trying their utmost to understand and be helpful. I’m quite good at it because I’ve been practising for a long time and I’ve learnt a lot of social skills which I can maintain quite well for the duration of most social events as long as I get enough downtime in between, but I’m also determined to be as autistic as I need to be where possible, because it’s so much easier, more relaxing, and SO much better for my mental health.

Also, while knowing I’m autistic is an amazing liberating relief, and while I really like being autistic me because it’s so natural and right and comfortable, I also rather liked the strong capable mask person (which is possibly understandable – since I created a persona it probably made sense to create one of someone I liked rather than someone I hated). I don’t want to lose some of those strong bits (being “tough” is something I enjoy in many contexts), and I still need some of that resilience to survive and to live any sort of sensible life.

However, I know that, aside from the briefest of interactions, I have to be open about being autistic. I read of people who hold down jobs and don’t tell their employers that they’re autistic – that wouldn’t be possible for me as I’m too obviously different, and at my best I can maintain that level of mask for only about 3 days absolute maximum, even when I’m going home in the evenings. In the past the jobs have just failed, and I’ve lost them. Without significant and noticeable adaptions there are things I simply can’t do. At the moment I’m not even close to being able to work, but if that ever changes then there’s no way I could hide such a big part of me. I can currently act neurotypical for an hour or so at most these days, certainly not long enough to hold down a job!

So I’m now stuck in a bit of an inbetween state, trying to work out where to go from here, trying to work out how I can take this new discovery, be myself, be openly autistic, enjoy the benefits that brings to me, even manage to advocate for other autistic people and educate others about autism, but still manage to live a life that doesn’t mean I’m sidelined for things, or unable to participate in many of the sort of events that make life interesting and worth living.

This post has turned out to be more a list of questions, of musings, of ponderings, than anything else. Maybe, a year on from discovery, six months on from diagnosis, and slowly emerging from burnout, this is a phase I have to go through. I have to ask the questions before the answers will start to emerge. I have to consider how I’m going to live my life, what I’m going to push myself to do, how much I can ask for adaptions to do things I’d be unable to do without them, how much I’m going to give up on some things because it’s too much, and where the balance will eventually lie. Maybe there will never be a full balance, but some sort of compromise between the bit of me that craves adventure and activity and the bit of me that needs solitude and peace.

And after two thousand words of analysis and consideration…

I still don’t know How To Be!

I am still having, consciously, to make decisions about whether to present the old mask to people, which is practised and known and I can do only for short lengths of time, or whether simply to “be myself”, which is new and unfamiliar to me and others and requires explanation and education but is so much more relaxing and feels so much more honest and authentic.

I suspect I’m still learning, trying things out, sometimes getting it wrong, sometimes getting it right, discovering what works and what doesn’t. I suspect that learning How To Be as an authentically autistic person who can actually manage to do things out in the world without getting constantly broken will be an iterative process, and I’m still very much at the start of that process.

Packing

To return to the place
Where my old life ended
And my old self
Disintegrated
Into a million tiny fragments.

I messaged a friend
A year ago
And said
“It seems like I might have
Some sort of autism”

I laugh now at the terminology
And ponder what “sort” it might be
I’d quite like it to be purple
With a side order of cheesy chips
And a glass of beer.
Maybe also a beard
And nice eyebrows!

I digress

A tweet set me thinking:
Do I have a love-hate relationship
With this place?
I’m not sure.
I’m not given to loving
Or hating
Anything much.
They always seem
A bit strong
And the words are loaded
With overwhelm.

But

I got it.

The paradox in my head
About this place
At this time of year
After the events of August 2016…

Two words
Describe it
Perfectly for me

Supportive
And
Traumatic

The support of good people
I know they are good
My brain tells me
But they are still people
And
As always
With a crowd of people
I get that sense of
Disbelonging
That I always have.
No matter how much I belong
I never do.
And if I feel I might start
To be part of something
I get uncomfortable
And withdraw.

The trauma of multiple meltdowns
My life falling apart
The eventual admission
Of just how disabled I really am
And that to return
I need adaptions
I can no longer be
“A normal customer”
And I know the truth
About my life.
The eventual comfort
Of knowing why I can’t
Do what most people can.

I have nearly cancelled this trip
So many times.
Decided I cannot go.
Too much.
The risk of meltdown.
The inevitability of speech loss
In a place where face to face interaction
Is valued.
At what point do I just give up?

Apparently not yet.
Because I have started packing.
To return to a place of

Unsettling support
And
Reassuring trauma.

Where all the feelings get intermingled.

And the routine
Is simultaneously
Comforting and constraining.

The discomfort of becoming
Part of a community
Of never quite knowing
What to do
Or how to be.

But I am drawn back

Simple to say it is the music that draws me
But it is more than that.
Observing people.
Intrigue.
Maybe even as close
As I come to being
Part of a community.
Skirting the edges,
Watching from the sidelines
Because throwing myself
Into the middle
Breaks me too badly.

I cannot keep up the acting
Or make so many conscious decisions
Or remember how to chat
Or cope with the noise
Or concentrate that hard
On doing the right thing
Or on explaining
Why I am not doing the right thing
For days on end.
It is too exhausting.

Adaptions are being arranged.
Separate eating.
People knowing I am autistic
And need time out
To recover.
Disclosure not optional
For me.
Essential.

It feels strange.
After so many years
Of “just work harder”
To realise that I can’t.
And the only way I can do anything
Is with adaptions
To enable me to cope.

I feel sad that I cannot join in
“Properly”
But I have tried this
For so many years
And always the result
Is disaster.

Prior to my mask disintegrating
I could do 3 days
Before meltdown or shutdown.
Now it is more like
24 hours
Before I need to be alone
To recover.

But I have still not cancelled.
I am still going.
Facing things that terrify me.
But going to a place
I want to be,
Even so.
I said, a couple of years ago,
That if I wasn’t ill,
It would be perfect.
(I only knew myself to be “ill”
Back then).

It’s a place where the old, “strong” me,
The heavily masked me of my early 20s,
Would have flourished
(Although collapsed upon return)
But the me of now can barely cope
Because I am so burned out and mentally ill
After so many years of masking.

And now the place is imbued
With heavy significance.

Had I never gone there
Would I still not know I was autistic?

The question hurts my brain.

I cannot cope with the notion
That something involving people
Is so significant.

That makes me too vulnerable.

Part of me wants to stay away,
Forget.
Part of me needs to go back,
Remember.

Because everything changed.
My entire perception
Of my whole life.

It is all too big.

So I shall focus only on practical survival.
Arrangements.
Food.
Packing.
Loading the car.

I shall count socks
And think about jumpers
And try to organise things
As best I can
Because I know
My executive dysfunctioning
Means I will struggle
With the most basic things
After a short time.

Even the packing is a challenge
Right now!

Accumulation

There are usually two reasons why I might not update this blog for several days. One is that I’m too busy, doing too much out in the world and am therefore spending all my energy interacting with people out in the world and all my time simply doing whatever it is and therefore don’t have enough energy or time left over to write a blog post. The other is that I am simply unable to write at all because I cannot translate the thoughts in my head into sufficiently coherent words because I have run out of energy completely and it is all I can do simply to survive and get through the day.

Both of those situations have been the case this past week, which is why I’ve been absent. After a couple of really busy music events the previous week (and yes, I did leave two clear days between each for recovery), I then went out to lunch on Saturday, went running on Sunday, out to lunch again on Monday, and then had to drive over to the vet on Tuesday to collect a rat who’d had a operation.

It turned out that, when added to the musical activities of the previous week with bare minimum recovery time and no “well days” in between for me to gain energy, four consecutive days out of the house was too much for me (in fairness, I didn’t plan four days, because I’d forgotten about collecting the rat, and even when I did remember, just a drive to the surgery didn’t seem like it would be too much – but it was).

And then, on top of all this activity out in the world with noise, and interaction, and so on, there were other things going on. Several incoming messages to deal with, things I wanted to say and comment on, friends who needed support in various ways, a bit of family stuff (father starting chemo), a birthday, anticipation of the upcoming weekend (which is now happening as I type), and my spoon rations were stretched to their absolute limit. And last thing on Tuesday evening the very last spoon of my spoon overdraft was used and I went from “coping” to “not coping”.

With hindsight, the signs were there. Saturday lunch was the last “proper meal” I managed to eat, and my food intake got increasingly erratic over the next few days. I started to feel exhausted again. I gave up commenting on facebook posts I’d wanted to because I couldn’t find the words. Sunday I got wiped out by going for a run and lost speech again. And once I got to Tuesday night I managed about one hour of sleep in total.

I haven’t felt up to writing a blog post, not even a “poem style” one since then. I’ve tried on several occasions. I’ve lain in bed with the phone, sat on the sofa with the iPad, and at one point turned on the computer and managed to type a title before feeling so awful I had to go and lie down again. But that has been it. Today is the first day I’ve really felt anything other than absolutely dreadful.

And I finally figured out, yesterday, I think, WHY that is. Even if I had been wrecked on Tuesday evening I should have been OK by Friday if I’m thinking of the “two days for recovery” rule, which I’ve been applying and which has, on the whole, been reasonably successful.

But what I hadn’t figured on was the cumulative effect of stacking up many events on top of each other. I hadn’t figured that the two days are just what’s needed for recovery from doing something, but that they’re not enough for proper recuperation. If doing something takes me into spoon overdraft, then two days can usually get me back to a balance of zero, but if I don’t take MORE time alone with minimum sensory input then I never get chance to accrue any savings. I’m living on credit the whole time.

And now I’m paying the price. I was supposed to be going to the Air Tattoo yesterday with my friend. I was not well enough to go, not by a very long way. I wasn’t even well enough to e-mail him to tell him I wasn’t well enough to go, so my husband had to do it for me. It was left that there might be a possibility of going to park and view nearby tomorrow, but, as I type this, I don’t think I’m going to be well enough for that either. I’m still struggling to eat. My sleep is still really disturbed. And my mood is not, shall we say, at the top of its game.

And my husband isn’t here to do the communicating for me either because he’s out for the next two days running the 100K ultramarathon that I am missing terribly and want to be doing too, but am not well enough. I’ve been dreading this weekend for a few weeks now, knowing what sort of weekend I wanted it to be, what I wanted to be doing, and what I wouldn’t be doing, because of stupid burnout and being not well enough to have done enough training or anything.

And it’s turned out that I’m not even well enough to go and watch aeroplanes either. I’ve run through, in my head, the potential scenarios for tomorrow, and I can’t imagine how I’ll cope. There will be people, there will be noise, there will be nowhere to hide, nowhere dark to go. It will be a long day that will use spoons fast. Even in past years, before I knew I was autistic and before this particular burnout, it’s taken me several days to feel well again after going to an airshow – I now understand why. My husband has made sandwiches and has left them in case I go and need them, but my head just can’t make it work right now. I’ve been trying to get out of the flat for the last day and a half in order to do a few jobs – I need to go to the bank, my phone has run out of credit, and so on, but even that feels too much for another few days. I need more time, more space, more recovery.

All this makes me sad. Things that I want to do, things that I love doing, I just can’t. It also makes me afraid, afraid that people will stop asking, that they’ll think it might be “too much” for me and that decisions about what I do will get taken out of my hands because people will think they’re protecting me by not inviting me to play music or have lunch or go running or go to airshows or whatever. And I’ll miss out on opportunities that I COULD have taken (my functioning abilities are so variable that I can often do something one day that I have not a hope of doing the next, and vice versa) and on things I enjoy. I also worry that they’ll stop being genuine with me, thinking that I won’t be able to cope with difficult stuff, and I’ll end up with a confused “half-reality” which I absolutely don’t want, even if I can’t always help with that particular thing at that particular time.

I have to learn this stuff for myself, and I have to discover just what abilities I’ve been left with following the burnout of the last year, just how far I can push before I break, and what I can do to mitigate against the effects of going out into the world and doing things. I have to learn how the cumulative use of energy stacks up and what I can do about it. Even realising, this week, the difference that “accumulation” of spoon debt makes to me, it has become obvious why I’ve struggled so badly to hold down even part-time jobs. Even if I can get through the first week, the damage to my energy levels stacks up so I’m incapable of doing the same in the second week, and I eventually fall apart. Looking back now, it’s easy to see the patterns. And in a strange way, being able to see those patterns and understand why I lost the jobs is at least satisfying and persuades me, just a little more, to stop blaming myself (as I have done for years) for my many failures in the workplace.

Before my husband headed off to go running around the countryside we were able to discuss some of this. He reminded me that it’s still less than a year since the huge discovery that I was autistic (which is possibly the most life-changing thing that will ever happen to me), and it’s still less than 5 months since my diagnosis, and that I’ve actually come a very very long way from where I was back in December. I’ve recently done things that I could hardly have dreamed of back then, so it really is progress overall.

However, progress takes work and energy and costs spoons. Even if the general direction is upwards, sometimes things will go downwards. While I continue to be the sort of person who wants to go out into the world and do things and to push myself to my limits (or, let’s be honest, to test the outer reaches of those limits and to keep pushing until I break, which is probably going to continue to happen quite a lot because living a “quiet life” is so counter to my personality that in its own way it’s even harder than doing the pushing because pulling back also takes a lot of effort), I will, inevitably, break from time to time.

Today, however, just doing what I really need to do will test my limits. I need to pay the council tax, I need to contact my friend about watching aeroplanes, and I need to eat. All of those feel like really really big tasks right now, but they’re what I’m aiming for. Anything else will be a bonus.