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.

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How To Be

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

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

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

I do not know How To Be.

The problem is this:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And after two thousand words of analysis and consideration…

I still don’t know How To Be!

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

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

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.

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!

The Preparation

Right from the start things were very different with the second referral. I think the triage service had given some explanation as to what had happened at the first place and had instructed the second place to see me as soon as possible, and we were also much better prepared and aware of what I might need in order to get through an autism assessment without having a giant meltdown part way through.

There was still, certainly, a lot of tension involved. The second place to which I had been referred was in the midst of a reorganisation period – it had, officially, closed and was being reopened under a different name and we had no real idea of timescale as far as when I’d be seen once the reopening had occurred. We also still had the first referral open, and had they been able to find someone to assess me at the first place there was a chance I’d have to go back there anyway. And, of course, there was the whole build-up to go through again, the nagging doubts that I wouldn’t be diagnosed autistic, that I would come home feeling broken and suicidal once more, and that there still wouldn’t be any formal answers as to why my life had been going so badly wrong for so many years.

I went through Formageddon all over again, once more trying to answer everything as best I could and to explain why I’d answered the more ambiguous questions as I had. We were also sent another (different) list of questions to ask my mother, so there were a couple more sessions of phone interviewing and learning even more things about my early life and how I was when I was very small. Everything was, as before, written down, duly answered, copied, printed, scanned, and so on, and sent to the assessment people.

We started to feel a bit happier when good e-mail contact was established between the assessment people and my husband. They acknowledged receipt of the forms and a few other bits of information we’d sent to them, and the appointment for my assessment was made. The third attempt to get a formal autism diagnosis was, it seemed, going ahead.

My husband then received an absolutely superb e-mail that felt very reassuring. It described the building where the assessment would be held, the lighting, the furnishing, and outlined that once we arrived we could organise the layout of the room to be as comfortable as possible. It was made explicitly clear that I was welcome to take cushions, blankets, fidget toys and so on with me, and that we’d agree on a schedule of breaks throughout the assessment time, which was given as around three and a half hours. An outline of the format of the assessment was also sent, and parking at the venue was also mentioned. It felt very encouraging and we started to believe that these might be people who actually knew how to communicate with us, who understood that we needed clear information and practical help.

They also made it clear that we were welcome to send information in advance and that that would be helpful to them and would also mean that if there were things I was unable to explain in spoken words on the day they would already have the information so that wouldn’t be a problem. We’d sent around 60 pages of notes and information to the first centre although there was very little evidence that they’d really looked at it and I felt a bit jaded about the possibility of sending things that I was working hard to produce that might likely never be looked at. However, we determinedly made ourselves take a “clean slate” approach and I set about providing as much information as I possibly could, including sending the original files of some of the early posts on this blog.

Then came an even more reassuring document – a more detailed outline of what we were going to discuss on the day, along with explicit statement that there were no “right” or “wrong” answers. It was made very clear that the assessment was not going to be about “passing” or “failing” some sort of test and that the criteria on which I would be assessed were not some sort of “cut-off” on a quiz, but on a whole lot of different things regarding the way I communicated, interacted, behaved, and so on. This was not a “box-ticking-getting-a-score” thing, but an exercise in observing me and finding out how I thought and felt and communicated.

I set about going through the outline, answering everything as best I could, and saving it to yet another document in the growing “Autism” folder on my computer – another document full of evidence and thoughts, another 10 pages to add. By the time I arrived at the assessment itself, I had sent over 120 pages of 11-point Calibri for the assessors to read, some of which we’d printed and posted, and some of which we’d sent by e-mail, the last batch just days before the assessment itself. The feedback we’d been receiving by e-mail suggested that the assessor was actually reading it too, and I was absolutely desperate not to miss anything out, to tell the full story, to supply as much information as possible. After all, they’d said on the appointment letter that the more information I could supply, the better, so I took them at their word!

The final bit of pre-arrival preparation was an e-mail to tell me exactly who would be at the assessment (two people, one of whom would be asking the questions while the other mainly observed so I wouldn’t have to cope with talking to two people at once), and to inform us that a parking space had been booked and would be signposted and to give us a mobile phone number to contact if we got into any difficulties on the day.

I think we were about as prepared as it was possible to be!

Summer School

One of the most striking things that happens to so many of us who are diagnosed or identified as autistic late or very late on in life is that as we learn about autism and what it actually means and how it affects our lives, there is this constant stream of “lightbulb moments” where events from the past suddenly make sense and can thus be reinterpreted very differently. Those of us who grew up oblivious to the fact we were autistic but just knew that life was very very difficult (and assumed, since it was all we knew, that that was the case for everyone but that they somehow coped with the difficulties better than we did) have a lot of reframing of our past to do and a lot of moments that we can now perceive completely differently as a result of knowing we’re autistic.

A couple of days ago I was looking through my “on this day” feature on facebook, as I do most morning, and this status from two years ago appeared:

It is so nice to be alone. Away from all the other people and “group work” (i.e. HELL). Just me, York Bowen viola music on the laptop, a bottle of wine, and a box of maltesers.

I was instantly struck by my relief at being alone and my assertion that group work was hell. I decided to have a look at some of the comments I’d made on the status and they made for further interesting reading:

I’m at Open University Summer School. There are people everywhere. They’re lovely people, but I’m just not good with lots of people all at once. They all have social skills that I just can’t do. The work itself is no probs, but then we’re told to “discuss this with the people sitting around you” and “work in groups” and all I hear is noise. I don’t have the filters for it. Everyone else chats and laughs and I feel lonely and isolated. I drove off campus this evening and found a Tesco to buy stuff then just drove, with music, on my own. It was the most soothing bit of the day.

I limit parties and things because I know they use so much energy and I often need a lot of time to recover. If I was an animal in the wild I’d be a polar bear or something that lived a largely solitary life.

Interacting with people all day is just exhausting. The maths is easy, and the people are nice, but there are so many of them, and it’s so tiring having to smile and pretend to be normal all day.

This is going to be a very very long week. People keep telling me I’ll love it. I’m not loving it. I arrived and broke down in tears and collapsed. If there was a way I could get out of it I would. I hate it.

All the above remarks in italics were written over a year before I knew I was autistic. As far as I knew at that time I just had mental health problems and, at the time I believed the only current issue I had was what I believed to be “normal” levels of anxiety. The disability officer from the course had even called me the previous week to check that I was OK (having read on my student record that I was listed as having bipolar disorder) and I’d assured him that I was between episodes and that everything was absolutely fine and I didn’t need any accommodations but thank you for asking etc etc. The only thing I did check was that I would have a bedroom on my own – I have known all my life that sharing sleeping space with anyone other than people close to me and selected by me is absolute anathema and on the occasions where I’ve been forced into that situation I’ve spent the night anxious and sleepless, desperately waiting for morning.

So I set off to Summer School without any adaptions in place. And I struggled from the outset. I arrived at registration in tears, desperate already to go home, but knowing that this was a compulsory course and I’d fail the degree without it. I sat through a lecture about group work and about how we were being assessed on our interactions with the other students (all of whom were complete strangers to me) and that we had to be actively participating and not looking at the ceiling or staring out of the window because we would otherwise be marked down. The fear started to rise. My anxiety levels started to skyrocket. I remember being desperate to get out and to go home. No degree was worth this amount of torture, surely?

And, as we moved into the group work session and I sat with three complete strangers trying to design some sort of mathematical modeling experiment, trying to look into these strangers’ eyes and to “look interested” and to do all the things we’d been told to do in the lecture, the tears started to roll down my face and then the crushing panic as the noise got louder and louder and the voices of the people around me started to blur into this horrendous and incomprehensible sound and then it felt like the walls of the lecture theatre were going to crush me to death, and the inevitable meltdown happened.

I sat in the corridor outside the lecture theatre rocking and crying until someone eventually found me. I can’t remember exactly what happened next, but it became obvious that I wasn’t going to cope with being a “normal” student. Some adaptions were made for me – I was moved to a different overall group with fewer people, and it was agreed that I would always have a seat near the door or on the end of a row, not in the middle of the room.

It helped a bit, but after a couple of days I was finished. I’d also pretty much stopped eating by this stage (the dining hall was another source of noisy clattering fear and social interaction, and any acquisition of food that required any input from me was impossible for me – I stood in front of a toasting machine one morning at breakfast and cried because I just couldn’t work out how to get toast – I would have gone hungry that morning had another student not made some toast for me and put it in front of me).

I was in touch, as usual, with friends and my husband via facebook. My husband offered to drop everything and come up on the train to see whether he could sort me out and calm me down and get me eating again. The course directors were initially reluctant – I wasn’t registered as needing a carer, and they were also suspicious that my husband would arrive and simply take me home. However, it was fast becoming obvious that I wasn’t going to last much longer on my own anyway so my husband was allowed to join me and he arrived and brought my “safe” foods and got me eating again and somewhat back on track and I managed to stay for the rest of the course.

I remained very stressed for the rest of the week, but as the end approached things did improve. I self-medicated heavily with alcohol and caffeine in order to cope, and landed up in a group with some very good people who helped me through the group work and seemed fine about having to sit near the door in every room (I’m still facebook friends with them, two years on). Perversely, one of the parts of the course that many people were worried about was the presentation to a room full of tutors and other students – for me it was the easiest and least stressful part of the whole experience! This seems to be the story of my life – I find things that others find so easy that they don’t even think about them really really challenging, and things that others find challenging I often find unproblematic!

And, it’s only now, two years after the event and eleven months after starting seriously to investigate the possibility that I might be autistic and what that even meant, that I can now understand just WHY Summer School was so difficult for me, and just how disabled I am and how much support I need at times in order simply to survive. Back then I didn’t have a clue about “sensory spoons” or that not having the ability to cope with multiple conversations in a room was the result of the way my brain was wired rather than me just being hopeless. I’d never heard the phrase “executive functioning” and couldn’t work out why an unfamiliar toaster might make me cry and I simply wouldn’t be able to work out how to use it. I didn’t know just how much energy I was using coping with eating whatever food they provided rather than my own routine “safe” foods that I usually had at home. I didn’t know why the lecture on group work made me so terrified, and I couldn’t begin to comprehend how the other students could spend all day in lectures and group work and chatting at coffee breaks and then go to the bar in the evening and STILL cope without crying and breaking and sobbing and rocking in the corridor – I just assumed they were geniuses of some sort with unlimited energy and resources and that I was broken and pathetic. I never even found the bar!

Now it’s all explained. And now I have to work out what to do when I go away from home on my own in the future. I still don’t have it worked out. I’m supposed to be going away in a few weeks’ time and I need to work out what accommodations might be possible and what I will need in order to get through the week. Then I need to communicate it to the people concerned, which is even harder. I’m struggling with it, even with the knowledge I now have, and when the confirmation e-mail arrived in my inbox the other day I went into a state of abject terror and nearly cancelled. I’m still trying to work out what to do so I don’t end up with a repeat of the Summer School scenario.

And although I now know why all these things have gone wrong, I’m still less than a year into the whole “knowing I’m autistic” thing. I have no problems with being autistic – it’s simply the way that I am – but asking for help has never been something I’ve found easy, and I’m still trying to work out exactly what “help” would actually be helpful, which is another huge job on its own! And after 4 decades of believing that when I couldn’t cope it was my fault and I just had to deal with it, the change in perspective is absolutely massive.

This is still, I keep reminding myself, a process. And, as I keep hearing from those who’ve been through the same process, it will take time.

I hope I’ll be able to work it out eventually!

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.