Wasting Energy

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s still very much a work in progress!

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Still Complicated

After my autism diagnosis I was fortunate enough to be given two follow up appointments with the assessor, mainly, I think, to discuss how I felt about being diagnosed autistic once I’d had a little time to process it, and also to discuss the report and finalise paperwork and so on.

The first of those appointments was in April 2017, and I know that by that stage I’d already learnt quite a lot more than I’d known in February. Having a formal diagnosis finally gave me the confidence I needed to start interacting with other autistic people, and I was starting to discover that some of these people were more like me and some less like me. I slowly started to try to work out where I fitted into the autistic community and what role, if any, I might play in it in the future.

There were things that were obvious from the off. I’m not a computers sort of autistic, nor a gamer, nor do I seek particular solace in nature. Neither am I a hyperempath, nor particularly introverted, nor what most people would regard as shy! I can sometimes be quite extroverted, I have to work hard to try to interpret the feelings of others so as to try not to cause offence, I like engines and machines and cars and trucks and planes (and yes, trains too), but even syncing my phone to the computer or trying to do anything new with this blog can reduce me to tears.

But there were other things too. And, as we started to unpick all the features of me that were clearly related to me being autistic, we started to notice that there were quite a few things that weren’t explained by autism. And as I read more about neurodiversity in general and started to interact with people who were neurodivergent in many different ways and not necessarily autistic, something else started to emerge as a possible contender for consideration.

It was as though somebody had laid a whole load of objects on a table, each object representing a trait (this trait might be a “skill” or it might be a “difficulty”). As I’ve steadily been diagnosed with different conditions over the decades, these objects have been removed from the table and put into a bag labelled with the name of that diagnosis. When I was diagnosed with anxiety and depression a couple of decades back a few objects were removed from the table, put into a bag, and taken off to be given an antidepressant pill and some CBT. But there were still rather a lot of things there. The bipolar disorder diagnosis nearly a decade ago removed quite a lot more objects from the table and quite a lot more of my life was explained, but again there were still an awful lot of my “eccentric” traits left behind.

Then autism arrived. And a HUGE number of objects were put into a brand new bag with “autism” written on it. I took the bag and started to work through the contents and to try to deal with them as appropriate (e.g. there was an object that told me fluorescent lights made me ill, so I wore sunglasses and I now ask people to turn off lights when I can). Learning to understand all these traits, sticking them all together in the “autism bag” was revelatory and changed my life massively.

However, there were still things on the table. And once the autism traits had all been removed, it was clear that there was another outstanding diagnosis that would explain quite a lot more of my behaviour as both a child and during adulthood. It seemed unlikely that I really was a highly spontaneous autistic who just randomly did things out of routine sometimes or that the times when I missed details and struggled with mundane repetitive tasks were down to autism – and these traits were having a significant and often detrimental effect on my life. Chatting to other autistics online it became obvious that the mixture of traits I had were the same as those who were identified or diagnosed as being autistic but ALSO having ADHD.

I mentioned this to the autism assessor at my first follow up in April. She said that she was unable to diagnose ADHD because it fell outside her remit. She was absolutely totally certain that ADHD was not an alternative to the autism diagnosis because she was so totally certain that I was autistic, but she didn’t rule out ADHD as an additional condition that would be worth exploring elsewhere.

So we made an appointment with my GP, which, owing to terribly long waiting lists and difficulty booking appointments, entailed a 6-week wait. We used the precious GP appointment to briefly outline the results of the autism assessment and to broach the idea of ADHD. My GP referred us back to the mental health services, who were the people who were the ones to do ADHD assessments. And we settled down to wait, again.

Forms arrived a month or so later. I was away at the time so we didn’t manage to complete them straight away, however, eventually, in September, we completed Formageddon Round 3 – another set of questionnaires for me, a set for my spouse, and a set for my mother. I might write the process up in more detail at some point, but not today.

And so, at the start of October, I was given an appointment at the mental health services for what we believed would be a relatively straightforward ADHD assessment.

It turned out a bit differently from what we expected. I’m not going to go into details right now, because my head is still doing a lot of processing, but suffice to say, things changed from what we were expecting (the time and personnel of the appointment were both changed just beforehand). It turned out that I was seeing my old psychiatrist from many years back, and, of course (though I already knew this) it was in the mental health centre I’d left many years ago and had been to rather a lot at a not very happy time of my life.

The triggering effect of being back in the place, with the person, coupled with the fact that I was, on this occasion, again deemed “too complicated” (warning for picture of self-injury if you click the link), was nearly disastrous. This time, however, unlike the occasion in November 2016, my spouse spotted the signs and suggested I take a break. I spent most of the appointment outside, rocking on the pavement and communing with a pot plant with a small white flower.

When I went back in for the last few minutes of the appointment my spouse had clearly explained a lot, and my autism report, which my GP had sent with the referral, had finally been read. It had also become obvious that there was something of a vacuum as far as finding anybody who understood both neurodiversity and mental health issues, and the ways in which they interacted, well enough to give me (an autistic person with bipolar disorder) an ADHD assessment. My psychiatrist, however, did think that there was someone who could be asked to help and that it was worth a try.

I’m not sure I was wildly optimistic at this stage. It seemed like the process of finding people who could actually work out what was going on in my head and help me put the objects from the table into bags and then deal with the contents of those bags, was just an uphill struggle. I pondered whether to just give up and go home and drink stronger drink, but in the end I was curious enough to wait to see what happened next.

Still Here

It’s OK
I keep telling myself.
People take holidays from things
All the time.
Maybe I haven’t failed
At this blog…

…I’ve just had a break.

There is so much still to say
And I need to respond,
STILL,
To messages and comments and so on.

But this last week or so
I have been a bit broken.
The price I pay
For doing things
That sap my energy
And require me
To be out in the world.

And there have been other stressors
Recently
I tried to list them yesterday
But couldn’t.
However,
I might manage today:

Washing machines
Our living situation
Bills and so on
More forms (triggering)
Childhood, children
Gender identity
Invalidation
Suicide awareness
And ideation
Further anniversaries
My biggest breakdown
(16 years ago today)
Starting to examine my childhood
(1 year ago today).

I have been low
And
I have been expecting too much.
Pushing too hard.

Accepting the limitations
On my life
Is not easy.

But I risk my recovery from burnout
If I don’t take things gently.
I have to keep reminding myself
That I am disabled
And that’s OK.

And it’s OK to take things gently.
And nobody will tell me off
If I don’t blog for nearly a fortnight.

I am still here
I still have many posts to write
But life has been a bit of a struggle recently
So I’ve been a bit absent.

But I’m still here.

A Silly Tale

My Executive is not functioning
Their suit is creased,
They cannot find their papers
And their briefcase
Is full of ash.

The ash is from my burnout
And it spills all over the office
In great clouds,
Covering everything
In a fine dust
That will take some time
To clean up.

In the meantime
My constant hand flapping
Is spreading the ash still further
And it reflects the light
Coming in from the windows
And makes stimmy patterns
In the air.

When the ash settles on the desk
I like to run my fingers through it
And make circles in it
And then wash my hands
Because it feels a bit weird
On my skin.
Sand is nicer to play with.

My Words keep going AWOL
But they never leave a forwarding address
They just disappear.
I think they go off for a holiday
Sometimes.
Or perhaps they’re just down the pub
Enjoying a few pints
And a pie and chips.

Maybe that’s why my Diagnosis
Was so late.
It was sitting in the pub
For 45 years
Eating pies and drinking beer
And because it has such
Severe
Time agnosia
It didn’t realise that it had missed
The last train.

Although it finds trains
Rather stressful anyway.
And leaving the pub
Would have meant change,
Doing something different.
So maybe
It just gave in to
The inertia.

And, of course
Because everybody has such poor
Communication skills
Nobody was able to tell anybody
Where it was.

And night after night
My Executive got home
And ate the same takeaway for dinner
Every night.
Because even before the burnout
They couldn’t function very well
And needed their friend Routine
Who liked to have the same thing
Every night for dinner anyway.
And keeping Routine happy
Was always good.

Mask bullied my Executive
And tried to make them function properly
And told Routine to stop being so stupid.

Mask was an annoying tit.
Irritating and itchy,
No matter how many labels I cut out of it.
It looked good though
Everybody told me so.

But it got too warm.
Overheated.
It kept trying to keep the Words
At home
But they kept slipping out
The back door
And vanishing.

Then things started to melt
At the edges
Senses went a bit haywire
And there were explosions
And people started to notice.

My Executive stopped coming home some nights
And stayed at the office
To keep cool
And avoid the bullying.
Routine gave up eating
And sat in the corner
Rocking hard and hitting themself and tearing their skin.

And then when the Words got home
After a night on the town
They told me that my Diagnosis
Had been seen in the pub
And that closing time
Was fast approaching.
Last orders had been declared.

When my Executive
Returned from the office the next evening
They found Routine crying in the garden,
Clutching a fidget cube and a furry tangle.
My Words explained what had happened
By typing into an iThing.

Mask had got too hot.
Way too hot.
Melting down had increased
No time to cool.
Mask had cracked in the heat and would no longer stay on.

Sparks, flames, and total burnout.
Explosions so loud that ear defenders were needed.
Piles of smouldering ash everywhere,
Which my Executive tried to put into their briefcase,
Though they didn’t help with functioning
And eventually made a mess in the office.

But just as all seemed lost,
My Diagnosis finally got back from the pub
With an official Report
(And a kebab).

Mask should never have been worn for that long
Masks when worn for long periods
Can overheat
And are a burnout risk.
Safety procedures had not been followed.

Report said that
Routine needed care and love,
My Words should be allowed to come and go as they liked.
My Executive needed an assistant to function
(And would also have to sweep up the burnout ash,
Which could take a while).

Diagnosis explained that communication was hard
For everybody
And that Report had said so.

And everybody finally understood
What had been going on
And jumped up and down to celebrate.

Diagnosis was a bit drunk by now
So they went on the Internet
And ordered loads of spinners and toys and pretty lights
And everybody settled down
Under their weighted blankets
To recover from the events.

And they ate kebabs every night for months.
Because they always ate kebabs.
Because Routine liked them.

Lost Day

I woke early, feeling exhausted, and not a proper sort of sleepy exhausted, but an odd sort of depleted exhausted, like all the energy had drained out of me somehow and I could hardly move. I could hear birds, very very loud birds, wood pigeon calls burning the insides of my ears.

I knew I had to be somewhere today. I knew also that getting there would be difficult. I looked at the schedule for the rest of the week, which I had photographed and saved on my phone. I tried to work out what I might be able to skip without causing too much inconvenience or annoyance. My head wouldn’t think very well, so I started to try to type into my phone:

If this were real life and I’m at sensory levels of now and tiredness. Would be schedule looking.

This was how the language emerged from my finger. I knew it was wrong and that it needed editing. And I also know that when WRITTEN language becomes difficult and starts to go wrong in that way, that I’m heading into shutdown. This is something I’m starting to learn, now that I’m actually observing myself with some knowledge, rather than just declaring myself “ill” or declaring that “my head went wrong” as I have done in the past.

I attempted to speak. There was nothing. No surprise there. If the written words are starting to go wrong then the spoken ones are almost certainly non-existent.

It was still early. I still had to get a message to the outside world that I wasn’t going to be where I was expected to be. The best I could do was to message my husband a few words and hope he could interpret what I was trying to say in order to convey some sort of message to those who needed to know that I wouldn’t be appearing for rehearsals this morning. He received the following messages:

Fail now. Is. Words. Morning. Not.

Now. Schubert. Prob. Can’t.

Tell.

Write hard. Speak not. Food not. Later.

And because he has long experience of such communications, he was perfectly able to send a message saying that I wasn’t able to get to the Schubert rehearsal and had asked him to pass on the message and that I didn’t need food and wouldn’t be able to communicate for a while.

At some point during the morning someone brought me a cup of tea and left it outside my tent. I was unable to respond, unable to move from where I was curled up under the duvet, unable to do anything at all for a while. This is all absolutely normal for me at such times, which have been happening since my early childhood. My mother observed the behaviour, still remembers it well, going right back into my early childhood, and even had a word for it, zonking, which I mentioned in Losing The Words.

Having successfully conveyed a message of sorts to the outside world, my brain then simply closed off. I slept a bit. I lay there staring at the side of the tent, a bit of plain fabric being as much visual input as I could take. I didn’t move. I couldn’t move. I don’t usually remember much from these times, just a feeling of being utterly drained, no energy at all, and something like a deep depression, not being able to form thoughts properly, no ability to translate things into words, nothing. My head is simply closed for business and my body follows it. There is nothing to do at that point except wait – it’s like some sort of reset is required before my overstimulated and exhausted brain will function properly again. I don’t respond, I don’t communicate, I just lie there and breathe, nothing more.

After a few hours I regained the ability to type and to form words and typed some of the thoughts that had by then started to emerge from my head into the notes app on my phone. Having established that I could once again produce proper typed sentences, I was then able to contact the outside world by facebook without my husband having to make the sentence structure for me. It was lunchtime. I was aware that I hadn’t eaten or drunk anything all morning (and couldn’t have – something else my mother had observed about zonking was that food was an absolute no during those times, and when I have attempted to eat or to keep functioning I have simply ended up physically sick and it’s been assumed I had some sort of bug or similar).

Somebody brought food and left it outside my tent. I was unable to thank them except online, but was able to eat by mid-afternoon, and was, it seemed, by this stage, quite hungry – even though I didn’t feel any sort of hungry, once I started to eat it was obvious that I was.

It took another couple of hours for the shutdown to be properly over and a further hour for spoken words to fully return. Although I can’t always tell when I’m going IN to shutdown, or that that’s what it is (though I am getting better at recognizing it as I’m learning), it’s really obvious when I’m emerging because I start to stim again, I start to rock and to move and get back to what for me is “normal”, a state of dynamic equilibrium as I like to think of it. For me, being still either means I am masking furiously and working hard to stay still, or I am ill and in shutdown, or I am asleep, or, occasionally, that I am relaxed under a weighted blanket or completely immersed in something or similar. The rest of the time I move, and that movement restarting is always a good sign – it’s the feeling that you didn’t know something was wrong until it was solved, and the minute it’s solved it was obvious how wrong it was before!

My sensory system remained on high alert for the rest of the day – I managed to go and sit in the audience to hear some of my friends singing and playing music, but used earplugs against the applause and was deeply grateful to a friend who asked others to move away from me to give me some space during the performance.

By mid-evening I was able to drive home, where my husband had “the food” (whatever I’m currently eating we call “the food” – I have cyclic obsessions with food where I eat the same thing every day for months, and always have done) ready and waiting for me, and I spent the evening doing all the familiar routines and being with the animals and recharging properly ready for the next day.

But what should have been a day participating was basically lost to a massive shutdown, and there was nothing I could do about it. I would have liked to have been in the rehearsals that morning. I would have liked to go to tea that day. I would have liked to join in the celebratory feasting and dancing (although I knew that the feasting would have been a non-starter anyway and I’d have been eating alone somewhere quiet), but I couldn’t.

But at least I know what causes these times now, and I have a word for them, shutdown, which makes sense to me and enables me to understand what’s going on. At least I have people who are willing to understand it too and to bring me food and so on and to help me out when it happens. And I know that I’m not getting some sort of illness (as has been suspected on many occasions in the past) and that I will feel better in a few hours’ time – I just need to wait, to be on my own, and to have as little input into my system as possible.

Last year, when the same thing happened, all I knew was that I felt inexplicably awful and couldn’t even tell anyone how or why. I spent a night silently crying in my tent in the dark, without food or help, with nobody even knowing where I was because I’d lost all ability to communicate and wasn’t even able to type a message to my husband. And short of “something mental health related or maybe a virus”, I had no idea why I was like that.

This year wasn’t ideal. It’s not really how I want to live my life, missing out on good times, having to skip rehearsals, having to sit on my own because my system can’t cope with much social interaction or noise, and so on. But it is better than the distress of previous years, than the anguish of desperately trying to function, trying to make things work, having to call in with some “unknown illness”, making myself worse by continuing to try to speak or function as I “should”.

I don’t like having to live this “half life”, which is what it feels like. But knowing why these things happen means I’m much less self-blaming, much kinder to myself, gentler to myself. And simply allowing the inevitable shutdown to run its course and not trying to push myself out of it means that I actually recover more quickly and am generally healthier as a result. Maybe once I’m more fully recovered from the recent burnout I’ll be able to do a bit more – I do hope so.

It does still all feel very much like a work in progress still. I have my answer as to why these things happen to me, but I now have to work out the best way to live, which I haven’t quite managed yet.

Leaky Head

I have been inattentive to this blog recently. My head has been so full that processing thoughts into words has not always happened. I have also been back to the place mentioned in The Discovery and, more recently, in Going Back, Doing My Best, and Packing.

I am still analysing the experience of returning. I am still recovering from being with so many people for so much time. My husband went away for a couple of nights an hour after my return and I have now not seen another human or spoken a word for over 40 hours and I am starting to regain a little equilibrium.

I am also trying to work out what any of it is for. And I spent a long time yesterday “persuading myself That I even want to [live]”, which is still not a foregone conclusion for me. In the end, I gave up trying to work out why I do anything at all, and simply reminded myself of Scott Jurek’s words: “Sometimes you just do things!” These words have served me well on many occasions over the last few years.

Better analysis will have to wait for a while. Pouring so much energy into things outside my normal routine has left me somewhat depleted and also very behind with blogging and “desk work”. There is much to catch up on, and it will take time. I am having to take things very very gently.

However, the last day I was away, the 20th August, was a significant anniversary for me – exactly six months since my formal diagnosis. And, at four in the morning, sitting in a tent in a field, I typed the words below into my phone. Just something to try to mark the occasion somehow.

They’re very unformed thoughts. I have not analysed them, nor edited them (beyond dealing with a couple of autocorrect fails), and my head’s not really in a place for discussing some of them yet. I suspect I’m also repeating things I’ve said before. Maybe this is the way my brain is doing the processing, still trying to work out what has happened in the last year and where to proceed from here.

Please don’t challenge me on the thoughts below. I’m not up to being challenged on them. They are my truth from where I am at the moment. I do not want positivity. I do not want reassurance. Those things are uncomfortable to me right now.

My head needs space to process the thoughts and I need to challenge any that might need challenging by myself, in my own time. I do not currently have the strength to debate them with others. I merely present them to you as they are.

My head is full of anniversaries.
The end of this summer’s music
Reminding me of how things ended
Last summer…

Then
I was just at the start
Of exploring
The “autism hypothesis”
As I called it.

Me? Autistic?
No.
I did not “suspect”
I had not “wondered for a while”
It hadn’t occurred to me
At all.

TBH I hardly even knew what autism was.
I sure as hell knew nothing about
Sensory issues
Executive functioning
Autistic inertia
Social imagination
Burnout
Masking
Stimming
And so on.

Except that I did.
I knew all these things
Really really well
Because they had been part of
My normal
All my life.

I just assumed the world was
The same
For everybody.
And that life was basically
A competition
To see who could cope
And be tough
And behave “properly”
Like they tried to teach me.

I knew I was weak
Because I couldn’t tolerate it well
And got so mentally ill
That I wished to be dead
Most days of my life
For as long
As I could remember.
I assumed this was normal.
Most folk wake up
Wishing they hadn’t,
Don’t they?

I knew I was bad
Because I was still naughty
Even when I was trying to be good.
And I was still lazy
Even when I was working my hardest.

And then I discovered I was not
“Normal”
After all.
And please don’t think
That telling me I AM normal
Is in any way helpful
Because it is not comforting
Nor reassuring.
It is invalidating,
Gaslighting.
And upsetting.

There is
A weird feeling of discovering
That most other people
Perceive the world
Differently.

Must be odd for them!

I wonder what it’s like.

But I’ll never know.

My head is full of anniversaries
The date on my calendar app
Reminding me of how things ended
Exactly six months ago…

Then
I was at the end of exploring
The “autism hypothesis”
Because it ceased to be a hypothesis
And became a formal diagnosis.

Six months of learning about
Autism
And
Sensory issues
Executive functioning
Autistic inertia
Social imagination
Burnout
Masking
Stimming
And so on.

And discovering that my normal life
Wasn’t so normal
After all.

And that most other people
Weren’t being tough
In the ways I thought they were.
The assessor was clear on that.
And absolutely totally clear
That I fulfilled all the diagnostic criteria
Even things I hadn’t discovered:
My gestures and expressions
Limited and atypical.
Things that should have been
Learned intuitively
I had instead
Learned cognitively.

My head is full of anniversaries
And I think I should be
Writing something more
Organised?
But life has been sapping my energy
And my mind still needs
More processing time.

The thoughts are just there
Undefined
Randomly swirling.
Logical arguments not yet formed

But the anniversaries are there.
Six months since diagnosis.
Half a year.
That should be significant?
Maybe?
Perhaps it is and that’s why I’m even writing this.
It feels significant.
Six months since liberation.
Six months since it became OK
To stop trying to be “normal”
To give up the old life
(Though I’m yet to work out
How to proceed from here)
To recognise how disabled I really am
And how much care I need
Though, perversely, I’d rather be independent.

Six months is a long time
A lot has changed.
Six months is a short time
There is still a long way to go.

I am still learning.
There is so much to learn.
I’m still new to this autism malarkey.
Both new to the whole idea of it
And the theories
And debates
And arguments.
And to how and where I fit
Into the whole neurodiversity thing.
Confusing complexities of language.
The triggering effects of so much exposure
To children and childhood and parenting discussion
An area of life I had cut myself away from because it is so alien and painful.

And while I have lived for decades with my “normal”
Redefining myself as autistic is odd.
I was colourful, eccentric, weird, something special and different.

Now I discover I was just a common or garden autistic all along.

I feel much less unique.
More bog standard.
But I also know now I’m not normal.

Paradox.
I’m odder and less odd than I thought
Simultaneously.

And I have to learn to live
Practically.
And keep persuading myself
That I even want to.

Now is not really the time
After a week of memories
Almost no sleep
Meltdown
Shutdown
Self-injury
Dissociation
People
Music
Trying to cope.

But today is the date
So I have allowed
Unformed thoughts
To escape from my head.

My head is full of anniversaries.
So full
That some thoughts
About them
Have leaked
Out of my finger
Onto your screen.

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!