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.

A Short One

I have just been out for a walk.

This might not seem like particularly startling news. Especially when I tell you that my walk was just 2 kilometres long and I was out for under 20 minutes (the 2km actually took 18 minutes, 24.7 seconds).

The fact that I know that much detail about my walk (at an average pace of 9:12 per kilometre) will tell those in the know that I didn’t just amble round the block randomly, but I took my Garmin (running watch) and measured time and pace and so on.

I also wore my running shoes. A pair that have done a couple of marathons with me.

All this might seem rather irrelevant, and a slightly strange blog post. Maybe so.

But it is important.

Because it is the start of returning, properly, to life. It is a tiny bit of something approaching “normal” in this huge sea of autism and mental health and newness and unfamiliarity.

Aside from one short run in January, I have not run since November. Granted, I didn’t run today, but I took the first few steps (2043, according to my Garmin) towards it. Back in January I was making a desperate last-ditch attempt to be well enough for my spring marathon (and ultra) season, but I really wasn’t well enough, and quickly gave up.

So now I have abandoned all races until at least the autumn. And I am starting over. And I am making it as easy as possible to start over.

Because at the moment I am still struggling with inertia, massively. I’ll write properly about autistic inertia sometime – it’s the feature that means our brains are very good at persisting with things, often for hours on end, but are terrible at starting and stopping or switching tasks. The effort needed to start something is huge, and takes a lot of energy.

Furthermore, I still have huge anxiety when leaving the flat. My senses are still in overdrive from the burnout. The world is still loud and bright and full of so much information that I feel like my head might explode. Previously I would have used energy to mask these feelings, consciously blocking out the input to my senses – doing so for years has both left me too exhausted to function and has been seriously detrimental to my mental health.

So, in as far as I have any control over things, I am determined now, to be me, and not to use that energy unless I absolutely have to for survival. Furthermore, since the energy to mask ran out I can’t do it. I don’t have the resources to act any more, so I have to live as I am, now acutely aware of my heightened senses, but also no longer making myself be strong, no longer forcing myself to block them consciously, even though they are sometimes overwhelming.

Couple all that with the anxiety I’m still getting just leaving the flat, and you’ll begin to see why going out for a walk was such a big deal today.

And so my strategy was to make this first outing as easy as possible, so that all my energy could be focused on getting out of the flat, dealing with the overwhelming light, sound, smells and so on, and overcoming that initial hurdle of actually starting anything at all.

So no running clothes yet (there’s a sensory issue with fabrics touching my skin which I will have to deal with), and not yet backpacks or belts or other such kit. Daytime clothes, my familiar handbag for keys, phone, and inhaler, but just two relatively easy adjustments to my normal “leaving the flat” gear – my running shoes and my Garmin.

Tiny tiny adjustments. Minimising the “difference”. In order to get out at all soley for the purpose of exercise, without the pressure of an appointment or another person expecting something of me.

And a “workout” so easy that it didn’t tax me physically. I know I can easily walk 2 kilometres, so didn’t have to put that part of it into the pile of obstacles in my brain, didn’t have to factor in a tough training session when persuading myself just to go out at all.

And I took a regular route that I run often, a known 2 kilometres. In the early afternoon when most people would likely be at school or work, and I’d have as little chance of encountering people as possible.

And so it happened. Starting over. Picking up fragments of my old life, the life that fell to pieces when I discovered I was autistic. The life that almost ended in December. The life that I now have to rebuild, differently, readjusting now that I know better what will help me to stay well.

The absence of either job or offspring in my life, coupled with my extreme burnout and wildly fluctuating moods, has meant that there has been very little “normality” of any sort during the last six months. Learning about autism and my being autistic has been fascinating, but I am also worn out by it – my entire life has been consumed by it for months. I need to ease off – my head is full.

It’s time to reclaim just a few bits of “normal” life.

Slowly, gently, with space in between to recover.

A couple of kilometres at a time.

Making Tea

It has just taken me around 2 hours to make a cup of tea.

“That’s ridiculous,” I hear you cry, “it doesn’t take 2 hours to make a cup of tea…”

And my sensible brain, my logical brain, knows you are right. I am a physically sound adult, with a perfectly reasonable brain, who has made hundreds of cups of tea in their lifetime, and making a quick cuppa, with kettle, water, mug, teabag, and milk all within easy reach should be something I can almost do with my eyes shut by this stage in my life.

But I can’t. Because I go to the kitchen, and I complete the first stage of the tea making procedure (fill the kettle with water) and my autistic mind (the bit with the impaired executive functioning – I promise I’ll try to explain all about executive functioning as soon as I can) simply stops processing at that point. My mind believes that the tea is made, because it has no further instructions – often, I cannot sequence tasks, so I do the first bit of the task and my mind makes a little tick in a box in my head and says “done”!

Twenty minutes later I remember that I was thinking that it would be a good idea to have a cup of tea. I look down at the place on the floor next to my sofa where the tea lives, and see a piece of carpet that holds only dust, hairs, a few bits of dubious provenance (I haven’t been up to vacuuming recently), and some vague tea stains from previous cuppas. But no actual tea.

So I return to the kitchen. And I put the kettle on to boil, because I realise that I didn’t quite manage that bit last time. This time I will FINISH the process, and I will get my tea. I am determined. Tea will be mine.

And then my mind ticks the box again…

I wander off, again, my mind once more tricking my brain into believing that the tea-making procedure is complete and I will soon be enjoying a cup of warm brown liquid of the type that many people from my particular part of the world find so comforting and familiar.

And, of course, I have failed, once more, to join the individual tasks together, and been unable to complete the (supposedly) simple task.

You’re probably starting to understand at this point just WHY it takes me two hours to make a cup of tea, and why there is such huge effort involved in such an endeavour. Each stage has to be thought of, consciously, separately, and the amount of processing power that a complex task like making tea can take is enormous. For years I have blamed this on simply being a bit “absent minded” (yes, everybody forgets things, everybody has put the kettle on to boil and wandered off) or on the strains of mental illness, but in my case it is extreme, and always has been. I’ve compensated behind the scenes as much as I can, but I eventually get to the point where I simply give up eating and drinking because the mental processes required to deal with them are so far beyond me that I just can’t work them out.

Then you need to add in another factor to the equation – inertia. I have always known that I had huge inertia, and have even used that word about myself for many years (probably since I learnt it in physics lessons when I was at school). I have discovered in the last few months that there is such a thing as “autistic inertia” (the thing that means autistic people have real difficulty starting tasks, stopping tasks, and changing from one task to another – this is another area I’d like to write about properly once I have the ability to do so, but for the time being, just imagine the very worst procrastination experience you’ve ever had, something you really really really didn’t want to do and were finding almost impossible to start, then multiply that by about a million, and you’ll get the idea)!

So, once I’ve sat down on the sofa after supposedly finishing making my tea, I find it almost impossible to move to get up again. And, once I’m up for the next stage in the tea making I sort of forget how to sit down again and end up wandering round the flat (which doesn’t take long because it’s rather compact) in a sort of bemused manner trying to work out what I was supposed to be doing.

My impairments in ability to sequence and complete complex tasks (such as making a cup of tea) and inability to start/stop/switch tasks have been things I have lived with all my life, and I’ve made gargantuan efforts to compensate for them by using enormous amounts of brain energy, consciously forcing myself off the sofa, consciously making myself try to think of the next stage in the tea-making process, and so on, which has, of course, made me really really exhausted. Despite enormous willpower (I have no shortage of willpower – I’m the kind of person who can run 60km on a busted leg to complete an ultramarathon etc etc) I have never been able to learn to make a meal with any reliable success or managed to change from one task to another without a significant break in between and a lot of effort. When I have tried to do these things it has very quickly led to shutdown or meltdown.

And, as I’ve progressed through life, things have got worse, not better. I was probably at my peak ability sometime in my early 20s, when, like most people who are young and reasonably fit, I had more energy than is the case now. But still it wasn’t sufficient, and by working so very hard to try to be “like everyone else” at that stage in my life and by believing the hype about how “cooking from first principles is somehow “better”” and trying to do what was “best”, I stored up years of damage that only became apparent when my mental health fell apart in my late 20s.

Now I know better than that and am learning that I have to work with the mind I have and not fight against it, although that in itself takes rather a lot of strength, and learning to ignore the “advice” so freely given by those who don’t actually have a clue just how incapable I actually am, is going to take a bit of getting used to. My life has been about striving for achievement, and improvement, not about adapting and taking things more gently – that’s a huge shift for me.

And just at the moment I’m doing more external things than I have been over the last few months. My executive functioning issues had improved slightly, but as I’m now using energy to do a bit of music (which I want to do), deal with benefits forms (which I need to do), fix to see my father (which I both want AND need to do), and arrange my follow-up appointment with the autism team (which I also both want and need to do), I’ve noticed a decline in my ability to function within the flat, a need to stim more, and a more regular loss of words – the energy to do other things has to come from somewhere!

Of course, doing what I’m now doing in terms of activities would have been impossible a few months ago, so there is progress, but it’s very interesting to note how much my basic abilities, with such things as tea making, suffer when I’m diverting energy elsewhere and can’t use it to patch over the holes in my mind where those particular connections are missing.

But I did get a cup of tea today, eventually, so that was an achievement!