The Incident

I can still remember the moment, even though it was some years ago now. It was the moment the woman kicked me, and then shouted at me, and I went into a total panic, terrified, unable to articulate anything, unable to cope, and my senses went haywire and I needed to scream and run away and not be where I was any more and everything felt terribly terribly wrong.

Running away at that moment, however, was really really difficult. The best I could do was to get to the side of the pool, get out as fast as I could. Shaking and trembling I managed to retrieve my stuff from the locker, put minimal clothes on over my wet costume, then slammed the locker door, screamed in anguish, and ran towards the exit of the leisure centre, and to my car, and to safety.

Except that I never reached my car. The manager of the leisure centre stopped me and wouldn’t let me leave. She made me sit down and I started to feel really sick. She started talking about police. I started to think “Oh fuck, this is seriously bad news”. I managed, just, to say the words “Mental health” to her, hoping desperately that once she realised I was in the middle of what I believed at the time was a really bad panic attack she’d let me go. She didn’t, although she did decide not to call the police on me, but instead called the local doctor’s surgery, taking my name from my leisure centre admission card.

Eventually I was deemed calm enough to be allowed to leave, and I returned home, where I then received a call from the surgery, which didn’t help matters at all because it reignited the panic. I slammed the phone down on the doctor, desperate to be left alone.

I never went back to that particular leisure centre, even though I had a membership that had some time still to run. I swam a few times again at a different pool, until it became too much and I just gave up swimming, even though it was something I loved doing, and, at the time, was the only regular exercise I took. Somehow it was just too difficult and the memories of that “panic attack” were just too painful.

I saw my own GP shortly after the incident and tried to explain to her what had happened and to get the incident erased from my medical records. It had been reported and noted that I was “violent and aggressive”, which I disagreed with. I didn’t feel violent or aggressive – I felt scared and distressed and not in control of my actions or my head, like there was some sort of explosive reaction inside me that I was powerless to stop. There was no violence. If anything I was trying to STOP anything that might have been perceived as violence, trying really hard to stop whatever it was that was making the world feel so awful at that moment.

My GP was sympathetic but said she couldn’t erase the record completely, however, she would add to my notes to put my side of the story on there and to point out that I had a history of these rather extreme “panic attacks” and that none of it was my fault. It was a damage limitation exercise at that point, but it was the best I could do.

Just over three years ago we moved to a different area, and to a place within easy walking distance of a swimming pool. I was aware that it was there. I took up running shortly after we moved and ran past it fairly regularly. Before the “incident” (as it is now known) I’d have been straight down there and joined, but I hesitated, because swimming had ceased to be my thing, even though it had very much been my thing for many years. Running was now my thing – it was safer, easier to be alone, with no time constraints, and so on. However, I did eventually take out a membership, which I only used once – after I’d run my first marathon someone said to me that swimming was a really good way of recovering, so I went down to the pool and did 42 lengths (one length for each full kilometre of the marathon distance) a couple of days after the race.

Then last September I went to see my GP again, following the suggestions from several friends that I might be autistic. My husband and I took quite a lot of notes we’d made about my childhood and my subsequent life and a list of things we’d taken as examples of autistic traits that were listed in various books we’d used for research. I think I started by saying something like “This is going to sound really random, but some folks have suggested I might be autistic…” before letting my husband take over the narrative because it all felt so weird.

My GP almost literally kicked herself and said something along the lines of “Of course, why didn’t we see this earlier?” or similar. And then, in a further “lightbulb moment” she mentioned, unprompted by us, the “swimming pool incident” and at that moment it became obvious that what had happened that day, several years earlier, was not a panic attack but an autistic meltdown (one of rather a lot of such things that have happened over the years). Bizarrely, the incident I’d tried so hard to have erased from my medical records actually confirmed the autism hypothesis, and my GP was writing the referral for a formal autism assessment pretty much before we’d even left the room.

After that one post-marathon swim, well over 2 years ago, I never went back even to the new pool. I discovered quite quickly that I could recover from marathons perfectly well without swimming, and something I’d enjoyed as a child, absolutely loved as a student, and done reasonably regularly throughout adulthood simply disappeared from my life. I had running now in any case, so it really didn’t matter whether I swam or not.

I’ve pondered for the last year or so whether I’d ever swim again. I vaguely have in mind that I’d like to do a triathlon some day, so thought that swimming might feature in my future somehow, although it was always “in the future” and since I don’t currently have a working bicycle or anywhere to keep one, triathlon is still firmly “in the future” and will probably require another house move in any case.

But last week a friend of mine went swimming. And I was suddenly rather envious. And I googled the opening hours of the pool to see when they might be. And I found my swimming bag, as it had been left, over 2 years ago, with costume, goggles, towel, and so on, all ready to go. Maybe? Just maybe? Then this morning on my facebook memories from a few years back there was a status saying that I’d been swimming for the first time in a year (evidently one of the times I was trying to get back into it, but that didn’t stick).

And the temptation was finally too much. Armed with the knowledge that it would be a total sensory overload experience and that how far I’d get with it depended not upon my physical swimming ability, but upon my system’s ability to cope with noise and light (even though my goggles are slightly tinted, they’re not as dark as I’d like) and being in close proximity to other people. KNOWING this was the case I was better prepared than I have been in the past, and the magic of the internet was also able to provide a little graph showing when the “least busy times” were, so I picked the time when it was likely to be emptiest (over lunchtime as it turned out), and it was indeed quite empty in the main pool.

And I bought a single swim, not a membership, so there’s no pressure to go again. If it turns out to be something I can manage to do regularly I’ll consider a membership at that point – rather than going in fast and crashing out, I’m trying to take it gently, one swim at a time, and not pushing how long I stay in the pool until I work out what my sensory system can cope with because I really really want to avoid a repeat of the meltdown scenario, which should be easier now that I know what it was all about and what caused the “incident” all those years ago.

Being back in the water was lovely. My arms aren’t as strong as they were, and my cardio isn’t what it was a couple of years ago (I already know that from recent running exploits), but I happily swam 40 lengths – I thought I’d go for a kilometre to be gentle, rather than the mile that used to be my regular swimming distance for many years. I was conscious that the real challenge wasn’t the swimming at all, but just being in the pool with people and noise, and I was trying to monitor how that felt. So far, so good, although I was pretty wrecked when I got home and needed total dark and silence for a while to calm down.

Who knows what happens next. One swim at a time for the moment. But I’m hopeful I’ll get back something that I used to love, now I know what caused it to go wrong several years ago.

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.

What A Year!

It’s my birthday tomorrow!

Don’t panic – this isn’t some sort of crisis of ageing, or plea for cake (though I’m not averse to cake), or any other similar thing. I have no issues with birthdays – been having them all my life and am generally pretty chilled about them.

I do always have a little moment of thinking about the actual number though, and usually, when I move from an odd to an even number it’s really satisfying – especially if it’s a really good even number with loads of factors, or some nice symmetry or something. 46 could be worse – a year of life for every chromosome is quite satisfying, and the fact that its prime factorisation is 2×23 echoes the chromosomal connection, since chromosomes come in pairs, enhances that satisfaction (even though 23 is a much larger prime factor than I’d ideally end up with for maximum numerical pleasure). That it’s made up of two adjacent even numbers pleases me, as does the fact that the digits add up to 10. I’m sure I’ll be thinking of many more advantages and disadvantages of 46 as a number over the coming year!

So today is the last day that my age will be 45. Unusually for an odd number, I find it really pleasurable. Prime factorisation of 3x3x5 is good, the fact that it is the sum of the digits is even better, and, of course, it is a multiple of 5. Multiples of 5 are the most preferable of all the odd numbers to me, so being a “5” is always good. Furthermore, the digits add up to 9, which is a square number (nice) and it is, itself, a triangular number! All this is good!

However, aside from an excuse to enjoy a bit of prime factorisation and so on, and maybe eat some cake or have slightly nicer wine for the evening, birthdays do make me pause, just briefly, to remember birthdays gone by and to reflect on the past year.

And this year I’m looking back at the last 12 months and basically thinking “Crikey! Did all that really happen?” in a really really big way.

Really really big!

Because 45 is always going to be the age I was when I discovered I was autistic and when I received my diagnosis.

I’m still struggling to explain just why such a discovery and diagnosis is such a big thing (though talking to others who have been through the same has revealed that I’m not the only one who regards this as such a big thing, as life-changing, and probably even life-saving (or, perhaps, life-prolonging, because I have to die sometime, just a case of whether that sometime is sooner or later)). I am, of course, still trying to get my head round the whole thing in any case – the discovery was only 11 months ago and the diagnosis less than 5 months ago, and on my last birthday I was still totally clueless about my neurology and about many of the things that have occupied my mind for most of the last year.

I wasn’t someone who’d “suspected for a while” (though I always knew I was a tad on the eccentric side and generally did things my own way, and I’d been aware all my life that the world was generally confusing and often difficult, and so on – but I assumed that was just the way life was for most folk and they just had more energy than I did), so I really have gone from “completely oblivious” to “diagnosed autistic” in a rather short space of time.

And I find myself in the slightly odd position of being rather knowledgeable about being autistic, simply because that has been my lived experience of the world all my life, which is rather strange. And, of course, because when I then get interested in something (such as autism) I get VERY interested, I’ve learnt a whole load of stuff that I’d never even have imagined existed this time last year! And most of it basically describes me, and my life – and I turn out to be rather less unique and different than I’ve always assumed! This is also odd – I was a quirky, crazy, eccentric, and rather batty neurotypical person who had basically failed at loads of stuff and was seriously mentally ill (all of this so I thought, though I’d never have used the term neurotypical because it wasn’t part of my vocabulary), and then suddenly I wasn’t – I was a really rather ordinary and quite stereotypical autistic person who’d been trying to be something I wasn’t for decades and had broken myself in the process (quite a revelation)!

And I’ve spent much of the last year thinking about all this, and learning, and realising that I AM, in fact, very stereotypically autistic. And as soon as I put autism into the equation, my life makes sense in a way that it never has done previously. And as soon as I realised what had been happening all these years and ran out of energy to mask, it all seemed so very very obvious!

And all this happened when I was 45. From first suggestions, formation of hypothesis, through self discovery and the diagnostic process, discovering other autistic people, taking my first tentative steps into becoming part of the autistic community, becoming a blogger, and starting the process of reframing my past and pondering what might make a more suitable future than the one that I’d been working towards all my life (and failing to achieve).

There’s loads more to do and loads more to learn. I’m still reading and watching and working out how to respond to people’s questions. I’m still trying to work out how to respond to my OWN questions – this is not something that happens overnight, and my views on things are still constantly changing and evolving in the light of new information. This is a process that will probably continue, to a greater or lesser extent, for the rest of my life.

But one thing is fixed. For the rest of my life, the year during which my age was 45 will forever be one of the most important years of my life (maybe even THE most important). The twelve months that have just happened have undoubtedly changed my entire identity (yes, it really IS that big – I am of course “still me” in many ways, but the knowledge I have gained in the past year means that my life will never be the same again – my past looks completely different now, and the way I live my life and feel about myself and my place in the world has changed forever – this is not a bad thing, rather a great relief and liberation from years of pretending to be someone I wasn’t)!

Tomorrow will be my first birthday as a known autistic (obviously, I’ve been autistic on all my other birthdays, but just didn’t know). I’m not sure how I feel about it (thanks alexithymia), but I sort of think it should be significant somehow. Perhaps I’ll work it out at some point. I think maybe there is a sense of moving on and continuing to rebuild my life and continuing to experiment and to work out what I’m actually going to DO with however many years I have left on this planet (that isn’t yet obvious to me, having had to ditch many of my previous expectations), but also a year of “this time last year”s ahead, as I continue to process everything that has happened and to review each milestone in my autistic journey with the benefit of a year’s hindsight.

But whatever happens in the future, what happened when I was 45 will stay with me for ever. 45 will never be “just another age” for me. Not only did I get my diagnosis at 45, but the whole process happened within that year. I can’t imagine I’ll ever have another year like it again.

My mind’s still a bit blown by it all really!

But, on balance, in a good way!

Still Very New

A year ago
Things had started
To go wrong.
Depression maybe?
Anxiety
Growing fast.
Things had not been right
For several months.
I didn’t know why.
Autism was not
Even considered.
I was just
An anxious eccentric.

Ten months ago
People started
To suggest that I might
Be autistic.
Which, I have to admit,
Was a bit on the weird side
Because as far as I knew
I was just me.

Nine months ago
After a bit of research
And discovery
And, well, if I’m honest,
Having my mind blown somewhat
By the whole concept
And
In the face of so much evidence
That to deny it
Would be a supreme act
Of illogicality
I accepted
And I wrote
“I am autistic”
For the first time.
And started to believe
That maybe
All my failures
Were not my fault
And I wasn’t lazy
After all.

Seven months ago
The first assessment.
Disaster, meltdown, damage.
Invalidation.
Despair
And serious thoughts
About whether I could even
Go on living.
My whole identity
Fallen to pieces
My whole life
A pointless waste.
Feeling guilty
Simply for
Breathing the air.

Six months ago
I had started to blog
And to engage
With other people.
Figuring that even
If everyone thought
I was a total idiot
Then maybe, just maybe,
That was better
Than being dead.
My logic being
That being a friendless idiot
Has potential for reversal
Whereas being dead
Does not.

Five months ago
A second referral,
Elsewhere.
We had to work for it
Quite hard,
Never giving up.

Four months ago
DIAGNOSIS!
Officially autistic.
Life changed
For ever.
Even though
It was already known.
I needed
Confirmation
Validation.
Big relief.
Mysteries solved.
A new confidence.
New hope.

Two months ago
Life gradually improving.
Slowly.
The first signs
That maybe
Burnout
Wouldn’t be for ever.
Acceptance
Learning
Gently starting
To rebuild
My shattered life.

And now
I continue to oscillate.
Part of me wants
To be an expert
An advocate,
And to learn
And educate
And debate the issues
And to be a confident
Articulate
(Most of the time)
Authentic
Autistic.
It’s not very difficult for me
To behave in ways
That are obviously autistic
All I have to do
Is stop trying not to!
But
Part of me still believes
That I don’t have the knowledge
Or abilities
For all of this
And that I’m out of my depth.
Because
I’m just a small person
Trying to figure all this out
And sometimes
I wish life
Would just
Get back to normal.
Though, to be honest,
I’m really not sure what “normal”
Even means any more.
Why is this all happening
To me?
I do not have
All the answers.
I just want to hide.
It all feels so uncertain.
I feel insecure.
Not confident.
Is the confident autistic
Yet another act?
My identity continues
To wobble
On its axis.
Trying to sort what is
Genuinely me
While maintaining
A person
Who can survive
In society.

Balance.

Difficult.

So I look back.
Two months
Four months
Five months
Six months
Seven months
Nine months
Ten months
A year

And I remind myself
That autistic brains like mine
Need time to cope
With change.

I have years of lived experience
I learn fast.
Yes.
But I also struggle.
And I need time
And space.

Looking back
At just how much has happened
In less than a year
Is a good reminder.
That I don’t have to have
All the answers
Yet
Because, for me,
All this
Is
Still
Very
New.

Compression

As I mentioned in Too Feely, my taste in clothes is driven largely by comfort and not by style. Those who know me will probably, if they try to imagine me standing in front of them in my normal attire, picture someone who nearly always wears loose elasticated jogging style trousers (shorts in summer), t-shirts (vest tops in summer), and a fleece and maybe a scarf when it’s cold. All of these clothes are usually selected for their loose comfort, their lack of restriction, and, often, their softness. I do occasionally dress up for dinners, concerts and parties, but only usually for short spells of time, and not on a daily basis.

So why am I sitting at my computer, typing this, wearing tight compression sportswear that’s several sizes too small, with an elasticated waist support fastened tightly around me on top of the already compressive clothing? And, more to the point, why am I not feeling sick or in pain or desperate to rip all my clothes off? Why did I CHOOSE to put these things on this morning?

The short answer is “I don’t know”. I haven’t a clue why, sometimes, I am desperate for the feeling of pressure against my body and I crave it and it calms me. Sometimes, when bashing myself against the sofa for half an hour doesn’t work, and drinking several glasses of wine doesn’t work, and thinking mindfully doesn’t work, and everything else I can think of doesn’t work, being compressed DOES work, and it works beautifully well. As I’m sitting here, wearing clothes that I usually wouldn’t go near on an ordinary day, I feel grounded and reassured by them. I feel the anxiety receding. I feel that the deep even pressure from my chest to my ankles is something beautiful, and, truth be told, if I could make it even firmer, even stronger, then I would (I’m limited as to just HOW tight the clothes can be by the need to be able to take them on and off)!

I’ve written before, in poem form, about the weighted blanket I bought in January and how much the pressure from that helps me and calms me. My use of compressive clothing as a calming mechanism since discovering I’m autistic predates my use of weighted items by several months. I wrote the following back in October 2016, in what essentially became a journal that was the predecessor to this blog:

29 October 2016

Weird probably autistic thing number whateverwe’reuptonow.

Mainly noting here for collating evidence / stuff to write about on future blog / in future book etc. And just because this is becoming a chronicle of experiences.

I always wear loose clothes. I know I do. I hate my clothes being tight. So I wear loose soft ones with all the labels cut out.

This afternoon I’ve been pretty weird. On my own in the flat (he is working) and also had a fairly tense week (water getting repaired), out yesterday, loads of stuff on the form (which is getting there – I hope to have it in the post on Monday), and a moderately stressful time.

So this afternoon was letting go time. I knew I felt very very anxious. Very not calm. Rocking and bashing myself on the sofa and stuff in the dark helped quite a lot. But not quite enough. It didn’t quite do what I needed.

I suddenly realised that what I really really wanted was pressure. To be wearing something tight. That was the signal every bit of my brain was getting from my body. I want pressure. Really really want pressure. The message was clear.

So it is Saturday evening and I am home alone wearing my tightest most compressive running trousers and a pair of compression calf sleeves. I don’t own any normal tight clothes, but I do have kit. So I am wearing the tightest kit I own.

And it feels beautiful and wonderful and I feel calm. And right. Sitting here in compression kit.

This is all really really odd.

But it is what is happening. And my promise to myself when this whole thing started was to do it properly. To listen to the signals I was getting from my body and my head. To work out what is needed. What helps. What is all this about.

If the strategies sometimes include wearing compression kit, then so be it. The calming effect is magical.

Back then I just used the smallest running kit I had lying around (and because I’d put on a bit of weight over the preceding year it was slightly too small and therefore helpful). Very soon afterwards, after a few more occasions where I’d hunted around in drawers and things to find other clothes that were fitted and even and a bit too small and decided that wearing compressive clothing from time to time really was going to help me, I deliberately went to my local sports store (as a runner I’m massively familiar with the place as I’m always obsessing about new kit and so on) and selected several items of clothing and various weightlifting things and so on and they’ve become part of my life now.

I did a bit of hunting around on the internet and found that liking compression from time to time is, indeed, not unknown among autistic people. I found tales of people going out with compressive sportswear under their clothes, mentions of corsetry being worn by autistic people, accounts of autistic kids wedging themselves under mattresses, and, of course, information about Temple Grandin’s squeeze machine which it seems she invented to get the sensory feeling of being hugged but without the need for human contact which some autistics are uncomfortable with.

I’m not uncomfortable being hugged by other humans – far from it, although I do have occasional times when I prefer not to be hugged (they’re quite rare), and I’m absolutely not a great fan of being tickled or very lightly touched or being breathed on or similar. But other humans are not always available, and sometimes I do need to be both alone and have that reassuring feeling of EVEN pressure against me (the evenness is very important – I absolutely don’t like straps or inconsistent pressure or anything that feels like it’s digging into my skin).

The research I’ve managed to do so far suggests that, just like bashing myself against things or hitting parts of my body with my fists or lying under a weighted blanket, that this need for firm consistent pressure is to do with balancing the proprioceptive system – the sense that feeds back to the brain precisely where the body is in space, that tells you where your legs are under a desk even when you can’t actually see them. It seems that, like all the other sensory systems (see Too Bright and Too Loud) autistic people’s proprioceptive systems can be a bit skewed and that seeking pressure (or indeed, being unable to tolerate it) is not uncommon.

And so, wearing compressive clothing when I feel the need has become part of my normal life over the last six months. And, as I hunted around last October for those few items of “too small” clothing I found there were a few. And all my life I’ve had occasional times when I’ve worn them, for, it seems no reason at all. I’ve just got up from time to time and thought I’d wear the tight things today.

Then, a couple of days later, sitting wearing the newly acquired sportswear and a waist support belt, I was suddenly hit with a really strong memory – a memory triggered not by conscious remembering, but by feeling, in the same way that starting to flap my hands had triggered this sort of “feeling memory”. I wrote it up in the journal:

31 October 2016

As I calmed down and felt the pressure from the belt I remembered having a big wide belt when I was a teenager. It was the 1980s so belts were big and wide.

And I remembered sitting at my desk in my bedroom as a teenager wearing some too small shorts and the big wide belt done up very very tight and pushing my chair right up to my desk.

A memory completely forgotten until today.

That was one of the ways I coped back then. 30 years ago. And I wouldn’t have had the first clue why.

This continues to be an extraordinary and revealing time.

I know this memory must have come from some time in my early teens because I can remember the position of my desk and the décor in my bedroom. I also know that I’d had no instruction to wear a wide belt done up tightly for any reason (probably, had anyone known I was doing it they’d have tried to discourage rather than encourage it anyway, so I expect I concealed it, probably afraid I’d get into trouble), and I had no access to anything like the internet or any other influence. But the memory that was triggered last October has reminded me of similar times that go right through my life, through student days, through most of my adult life, right up to the present moment.

And so I shall continue to wear what I am wearing right now until either I need to go out or until I receive the signal from my body (which can often be sudden and dramatic) that says NO MORE! Interestingly, the feeling of needing pressure of this intensity can vanish almost instantly, and when it does, I listen. I’m working out ways of making the system as flexible as possible and of doing what is most needed when it’s most needed, and I’m starting to observe how it all works and still trying to understand what it’s all about!

Storm Clouds

It feels as though storm clouds are gathering in my head these last few days. I’m not sure why, and I can’t work out if there’s anything I can do about it, but I have that feeling that I’m building the sort of tension that will eventually lead to meltdown or shutdown. But not yet. Somehow the energy is yet to be released. Things are too controlled. Maybe, knowing I have a weekend of things to do out in the world means that I’m keeping control somehow. I have that feeling of wanting to cry, but not being able to.

It’s an unsettling feeling, though not totally bad. I don’t even think the overload in my head and the build up of emotions (many of which I’m struggling to identify for alexythmic reasons) is entirely negative. It’s just that I can feel a gradual build up. Of something. I’m trying to analyse what that something is. I’m trying to judge whether some sort of big stimming session would help. I don’t know. It’s a very edgy feeling.

This is the fifth attempt I’ve had at writing about it. What has emerged as a common theme in the first four attempts is that this state is a mixture of two lots of emotion. One lot could probably be called negative, and the other, positive. They are existing inside my head simultaneously, and both pouring these strong, but not totally identifiable, feelings into my system. I get emotions like this. I always have, except when too depressed, or taking large quantities of medication, which seems to blank many of my feelings out anyway. One reason I hesitate to take medication is that much of it takes away things that I value – my appreciation of music, my excitement in the world, and so on.

And so, these huge waves of emotion keep washing over me, and I’m trying to untangle them in order to deal with them. Maybe a therapist would help with this, but I don’t have one, so I’m trying to do it on my own. Although it’s becoming obvious from trying to write it down as best I can that the same things are recurring over and over and my mind is still trying to deal with them. I’ve almost certainly written about them here before, and I apologise for what is probably terrible repetition (my husband says that he is used to me saying everything 98 times) but it seems that this need for repetition, for reassurance, for rehearsing the same argument over and over is probably one of my autistic traits too – something I need to do to get things clear in my mind.

And so the negative thoughts:

The constant nagging knowledge that my life will be limited because I simply don’t have the productive energy that most people do because I’m using so much of my energy to cope with my environment and to process language. I don’t like being limited, but decades of experience have shown me that the consequences of not consciously limiting my life and of trying to “be like everybody else” are poor mental health and catastrophic burnout. I am furious about this. I do not want to have to limit my life, but I must, and I know I must. I have to learn to be gentler, and allow recovery time.

I’m still not fully able to explain to people what being autistic really means. I’m still encountering “yes, but we all get tired…” types of comments, and I’m not yet able to articulate in words that what I mean is something different and that I’m not on about it being the end of a long week and I just fancy a bit of a lie-in. I need to write a blog post about this, I know I do. It is nibbling at my insides (yes, it feels like that) and I need to deal with it. Ditto the current controversies about stim-toys and spinners. I have so many and various thoughts about the whole thing, but I can’t make them into words currently, and that is frustrating me.

And talk of schools and classrooms and so on keeps pulling me back to my own childhood, the door onto which I had closed, I thought for good, until last year, when it had to be forced open. And once it was open, it was really useful for getting my diagnosis, but it hasn’t brought back floods of joyful memories, but of a time when my main objectives were to stave off bullying, to learn to behave, and to achieve good results academically. I had no chew toys or spinners – so I chewed my tie and my jumper and I played with bits from my pencil case and got into trouble for doodling during lessons (among other things).

The late diagnosis thing still irks me. The fact that I had to get THIS broken before anybody noticed that I was autistic. The fact that I was born at a time in history when the world didn’t know about people like me. I’m still sad and angry and regretful at so much of the first 45 years of my life. I’m still furious with the mental health specialists who didn’t know. Today we talk about acceptance being preferable to awareness – even the most basic awareness 20 years ago of autism in those of us who were AFAB might have saved me so much heartbreak.

And here I am, a 45-year-old burnt out non-binary autistic, going through the menopause, learning who I am, trying to rebuild my life, and doing it, currently, without help from anyone except a husband and friends. And I often feel like I am breaking, like I just want to vanish off the face of the Earth, because my youth has gone, and I want to cry for all these things, because they’re still bothering me.

But the positive thoughts are also strong:

The relief at no longer feeling the pressure to be a high flyer. The knowledge that I have a disability (and yes, for me, it is disabling – there is much to be investigated regarding models of disability, but that is not for now) and therefore I can stop beating myself up when I don’t achieve what I thought I should be able to is reassuring. The knowledge that the levels of self-care that I need are now “permitted” is such a huge relief, so liberating, and even joyful. I don’t have to be some kind of superhero any more – I can built this new life and stop pretending to be someone I’m not.

Most people I know are being massively supportive. I’m hugely lucky to have most of them in my life. Far from being deserted by old friends, I’m still, even, making new ones, people who care enough to be interested, people who read this blog and who are helped, people who understand the difficulties, and some who do not but are investing their time and energy and are willing to learn and be caring and understanding. This makes what I could call “big feels” – I don’t have a better expression than that currently. Like so often these days, I just hope people know what I mean.

And though I cannot change the past or do anything about my childhood or its difficulties, I’m now massively enjoying allowing myself to explore the world that has now opened up of toys and things to fiddle with and things that I can buy for myself without anybody to tell me not to. I can sit and stare at my glow in the dark spinner until it runs out of glow, I can roll the ball around on my fidget cube for hours at a time, I can have all the toys now that I never had as a child, and because I am old and spend the majority of my time at home alone nobody will tell me off for doing these things. I am making up for lost time in a big way, finally releasing all the bits of me that have been hidden all these years.

And the fact that the diagnosis has come at all, even this late, is still enough on its own to make me cry with happiness. The relief, the liberation, the knowledge of who I am and why I am and how I am. The permission to be something other, the explanation of why I’ve felt as I have all my life, and the solving of hundreds and thousands of mysteries from the last 45 years. The letting go of the old expectations, the shift to a neurological identity and a gender identity that feels properly comfortable to me, rather than one I was taught was the case. The hope that I will eventually recover from this burnout and will eventually get through this phase and that life will be better than it ever has been, and that I’ll eventually build a life that will be right for me.

And part of what is causing these emotions feels like some sort of huge “sigh of relief” from my entire being. I read about labels and words and why do I need the descriptor “autistic” if I know who I am. For me, I needed that descriptor to SHOW me who I am. Learning about what it means to be autistic is teaching me how to be who I am – because after 4 decades of acting roles, my real self has become somewhat obscured and needs a little help to emerge. I’ve had a lot of training to be someone else. I have a lot to discover. The minute I knew, and I allowed myself, and I learnt for the first time in my life to follow my instincts, things felt very very different.

And each time I’ve tried to write about this, these simultaneous bunches of feelings keep emerging, over and over again. Not even oscillating, like the states described in my earlier post, but together. Sadness and anger and regret alongside relief and liberation and happiness.

And the word at the end of every piece is still “autistic”, as if I’m still trying to make my head accept it fully, embrace it fully, and be able to go out into the world and live it fully. I want to do that, so very much. I know that it will not always be easy – but I do not shy away from difficulty and I never have.

Even writing it all down like this has actually changed how I feel, released some of the energy that I had when I started typing around half an hour ago. I’m calmer. The storm clouds have rolled on past for now. They will be back. The next meltdown and next shutdown will happen at some point, but typing everything up like this has had a healing effect for now, sorted things out a little. If anyone’s still reading, then thank you for indulging me. It has helped.

Disparate Facts

I’m going to tell you a few facts about me. These things have always been true. They are, on the whole, things that I have always known about myself. For the last 45 years they have been steadily accumulating, and just regarded as my “quirks” by everyone who has known me and known about some or all of these things.

1. I never go to the cinema. Although I went a few times as a child it was never at my initiation and as an adult I’ve hardly ever been. The last time was over a decade ago and we left after the first 20 minutes.

2. I was really naughty at primary school, constantly on headmaster’s report, constantly in trouble for various things, and not really getting any significant work done.

3. I do not know the name of any other person (apart from my husband) in the town where I live. I do not know my neighbours’ names and have never spoken to any of them.

4. I am deeply unfashionable, never wear make-up or a bra, and am utterly unable to comprehend why, say, wearing socks with sandals could be wrong since it’s comfortable and easy.

5. I really like even numbers and most particularly numbers with lots of factors. I like square numbers, and I believe numbers have a sort of hierarchy where some are more relaxing than others.

6. I scratch my head a lot and pick the skin off my scalp. In my 20s I did so very very badly and had open wounds on the back of my head. I didn’t know why I did this, it was just a thing I did.

7. If I spent 20 minutes or so in our storage unit I start to feel very very exhausted and sick. I have to sit down and I then deteriorate to the point where I have to go outside.

8. Sometimes I go really really quiet and just stop talking. It usually happens when I’m really exhausted or really stressed or I’ve just become really angry about something.

9. I cannot tell the time easily from a traditional clock face. Neither am I very good at telling left from right without thinking about it really hard and making writing movements with my fingers.

10. I was bullied all the way through school, even at secondary school where I wasn’t regarded as naughty any more, but as a bit of a geeky strange kid.

11. I’m a really rubbish cook. Before I was married I lived mainly on takeaways and toast, and I often forget to eat and have very little idea of how hungry I might be.

12. I sometimes get really really stressed and angry at everything in a really really short space of time and need to run away or hurt myself and I have absolutely no control over it.

13. I have never been able to keep a job for a sustained period of time and most of the jobs I’ve had I’ve left with some sort of mysterious mental illness, usually given as depression.

14. Left to my own devices I take my shoes off and sit with my legs crossed like in primary school assembly, or sometimes with them folded underneath me.

15. I get really stressed when I’m near the fridges in supermarkets. I usually leave my husband to do all the fresh food shopping and spend my time sniffing every single sort of fabric conditioner.

16. I have never had, or wanted, a satnav machine. I love looking at maps and if I have to go somewhere I don’t know then I look it up in advance and memorise the map.

17. If I am going to do an exam and I agree to meet up with people in the pub afterwards I will be much much more nervous about the pub than I am about doing the exam.

18. When I start a new hobby (or resume an old one) I take it very very seriously. I buy loads of books and research it online and often work on it late into the night.

19. My legs jiggle almost constantly if I don’t consciously try to stop them. I cannot sit still and have been known as a fidgety person all my life.

20. I will automatically assume, once I’ve finished writing this blog post, that you’ve already read it, even though I haven’t posted it yet! I will have to keep reminding myself that this isn’t the case!

If I had listed these facts a year ago I would have seen no connection between them whatsoever – they would just have seemed like a list of random unrelated facts. In fact, I would never have even contemplated making such a list – why on Earth would I have connected my inability to cook, with my avoidance of the cinema? or my behaviour at primary school, with the fact that I have never owned a satnav? or getting exhausted at the storage unit, with resisting fashion trends and not wearing make up? Thinking about these these things there seems to be very little connection, if any at all, between many of them.

Until you start playing “autism bingo”!!! I should imagine that, if I gave this list to a group of autistic people, many of them would look at it and say “Yes, me too, me too” or something similar. Obviously, not every single thing would apply to every single person (everybody’s different after all), but the minute I started researching autistic traits and examining my life, the above list of apparently disparate facts suddenly links up and makes perfect sense. It seems that I wasn’t really “quirky” in the way that I thought – these are all just standard manifestations of autistic characteristics!

I’m fairly certain that I will discover many more things that could be added to the list above as I continue to examine my life from an autistic perspective.

It really is about understanding.