Going Back

I returned
To the place
Where life
Fell apart
Last year.

To the scene
Of so many
Meltdowns
And tears
And disasters.

To the memories
Of fear
And difficulty
And wondering
Why
I couldn’t
Just get on with life
Like most others
Could.

A whole day
To pack.
The journey there
Dissociated.

Focusing on
The practical.
Doing the most
Essential bits.
Taking as much
Time out
Alone
As possible.

Starting to learn
To accept
Help
Even though
It is counter
To everything
I have ever
Worked for.
Having to change
My mindset.

Struggling sometimes
Someone talking
To me
When I wasn’t able
To process speech.
Conflicting instructions.
Near meltdown
But not quite.
Speech gone
For just over
Five hours.

Consciously being
With other people
When I couldn’t speak.
Instead of texting in
“Sick”
And staying away
As I would have done
Previously.

Senses on overload
Lights too bright
Music distorted
I knew it sounded
Wrong
As if being played
Through a
Faulty
Amplifier.
Not what Mahler
Intended!

Knowing
Some things
Would help
But lacking
The ability
To do them.
Inertia.
Energy.

Living away from home
Minus usual care
And routines.
A few meals
Missed,
Some medication
Missed.
Executive functioning
Declining
Sensory spoons
Depleted
Social spoons
Deficit.

Feeling guilty
Because
I wasn’t able
To contribute fully
To everything.

But

People helped.
No rehearsals missed.
Near constant
Low level stimming
Was fine.

And mostly
The music
Was wonderful,
Not distorted,
And I can
Still
Play
The viola.

Learnt so much.
Started to understand
Just WHY
So much of
This stuff
Has always been
So hard.
Now I understand.

Beginning to adapt
To the new life
With the new knowledge.
Starting to accept
That I need
To do things
A bit
Differently.
Consciously
Saving energy
Where possible
Now I know
What uses it.

There is more needed.
It isn’t all solved
Yet.
I still find
Asking
For adaptions
Really hard.
Partly because
It is so new
And partly
Because
I don’t yet know
What is possible
Or what I need.

But I am starting
To realise
Why some things
Feel bad.
And always have.
And even though
They still do
Understanding WHY
Helps.
And I can start
To notice
How things
Drain my energy.
And why being
Near to other people
Is tiring
And why “washing”
With vile slimy wipes
Makes me feel
Even worse
Than I already did
Without my bath.
Sensory hell.

It is still
Very much
A work in progress
This new life.

And I need
So much
Recovery time.

But it is possible
To enjoy
Something
I had thought
Might
Be beyond me
And so
Lost for ever.

There are
So many
Good things
I don’t want
To lose.

Maybe
I can keep
This one.

I went back.

I survived.

Busy and Hot

When I woke for the first time today, at around four in the morning, I asked myself what I was going to do with the day. I had all sorts of plans in my head for things I might do, places I might go, what I might write. As it is, I eventually fell asleep again, and have now only just surfaced. It is nearly midday and I know that the plans I made in my head at four this morning are, on the whole, not going to happen.

And after a brief moment of beating myself up about it, I suddenly realised why I was so exhausted and why I haven’t written a blog post since Sunday and why I didn’t write the one I wanted to on Tuesday or the others that I still want to write (one in response to something) and why my admin is behind and I owe people messages and e-mails and so on – I have been busy!

The last two weekends I’ve been playing music. It’s been amazing and enjoyable, and brilliant to meet up with friends (old and new) and to play under a conductor who’s an absolute pleasure to work with. The concert was on Saturday night, so I was pretty wiped out on Sunday, but felt moved to write the rather rambling blog post on pride anyway. Monday I went for a short run, which, given my recent running activity, was a big deal. Tuesday I went to visit my best friend. Wednesday I went for a coffee then went to buy a few groceries.

And all this at temperatures above 30 degrees, which we’re really not used to round here, and which drain my energy rapidly. Furthermore, there is no airflow through our flat, so the only way to stop the hot air stagnating and to get any sort of breeze is to use fans. The noise of the fans is really not good for me and overloads me pretty much to the point of meltdown within a fairly short space of time.

Maybe, to most people, that level of activity and a bit of hot weather really wouldn’t be a big deal. When I think back to the “me” of the past, before two huge burnouts, before mental illness was even identified, that “me” would have looked at the “me” of now and thought myself utterly pathetic. I’d have been unable to comprehend why I couldn’t just get my act together and, with enough willpower, just get on with it.

Of course, the “me” of the past being like that, forcing myself to live that “normal” life for so long, doing what was expected of me and using vast amounts of energy and willpower to do so (largely because I assumed everyone else was doing the same), is a large part of what has caused me to have two major burnouts and to have arrived where I am now, with rather depleted functionality and very low energy levels.

Fortunately the “me” of now is starting to learn. And, a few minutes before writing this post, I realised not how LITTLE I’ve done over the last few days, but how MUCH I’ve actually done. And, I had, once again, to remind myself that my mind works a bit differently from most people’s and that I need more downtime, more space, and that things that come fairly easily to many folk, are actually rather challenging and energy consuming for me.

So the plans that I made at four this morning are now dropped, forgotten. Today I need to focus on self-care. I need to stay at home, even though the temperature in the flat is still 28.5 degrees and the place smells stagnant and nasty because neither of us has had the energy to do any serious cleaning and there’s no airflow because it’s so still. It’s not ideal, but it’s not a choice, because I need the solitude. I need not to go through the anxiety cycle of going out and working what to say to people and so on.

If, and only if, I have enough energy beyond that required for basic self care, I shall try to sort out the jobs lists and my diary, and sort out what I need to do, even if I don’t actually do it, but I expect it won’t get much further than that. As I’ve increased my levels of activity, and as I start to gain a bit of functionality as I emerge from burnout and from the whole “discovering I was autistic and getting diagnosed” thing and all the shock and relief and complete re-evaluation of my life, it’s tempting to think that I can just “go back to normal” without any consequences. But, of course, that isn’t the case.

And, interestingly, the blog post I wanted to write on Tuesday was the one outlining how I now am, four months after my diagnosis (it was the four month anniversary on Tuesday). And I’ve sort of gone and written it anyway – at my second follow up appointment it was noted that the increase in activity and my “recovery” carries a price, and that I need to remember that. This week that price has been that my head has become more and more muddled, I’ve struggled to hold conversations and to form words, I’ve struggled more with basic stuff at home, I’ve retreated once again into eating the same thing every day, and my decision-making capabilities have plummeted.

My level of satisfaction with life has also dropped – despite what might be perceived by someone from the outside (I’ve been seen playing music, going for a run, visiting a friend, and having a coffee) possibly indicating that I am happier with life and doing more “enjoyable” things, I’ve actually felt less happy, more frustrated, and generally more anxious. Yes, I’m really pleased that I got out to play in a superb concert and that I went for a run etc. because these are things I love doing, but they still drain my batteries, and a combination of the heat and trying to fit in other stuff has meant I haven’t been able to recharge properly.

Ironically, a viewer from outside who observed how little I’ve stimmed over the last few days might decide that it’s some sort of “improvement” and some sort of “your autism’s getting better” thing. In fact, the reverse is true. I desperately want to rock hard on the sofa for a bit, to wrap myself in compression, and to hide under my fleece blanket – these are all good and lovely things and part of how I cope with having to deal with the outside world. But I can’t cope with doing them at the moment because it is TOO HOT. So not only am I dealing with bad sensory stuff (noise of fans, feeling sweaty and nasty, smells stronger) because of the heat, I can’t mitigate with the good stuff.

So, in an odd way, I’ve looked more “normal” over the last few days, but the effect from inside is that I’m feeling increasingly dysfunctional and anxious and edgy and irritable. This “how autistic people look vs how they feel” thing is something I’m increasingly thinking about and want to write about some day, because I’m beginning to get the impression that the two are much more likely to be inversely than directly correlated.

In the meantime, I do observe that four months have passed since diagnosis, and that life is continuing to change. The people who wrote Tiny Glimmers back in January and Eight Weeks On back in April would have been amazed by what I have just written above and by what I’ve done in the last few weeks, so even where I’m still failing and still not achieving what I want to achieve (that will probably always be the case for me as my natural inclination is to constantly aim for more and to push to achieve goals and so on), I’m actually achieving much more than I was, which is, of course, progress.

But today “progress” will be achieved by resting and gentle tasks and self care, not by pushing on through. That way, I hope that I’ll be able to start to recharge my batteries enough to be able to do more running and music and socialising and to be able to think clearly enough to deal with admin and communication and to write more of the blog posts that I’d like to write!

Coffee Please!

Yesterday I shared an article on my facebook page, along with a few of my thoughts and a few of my husband’s thoughts. Several of my friends made comments, and what struck me was the difference between the comments from my autistic and introvert friends and my non-autistic and extrovert friends. I was going to reply to a couple of the comments on the thread, but, as the reply formed in my head, I realised it was really much too long for a facebook comment, so I’m now turning it into a blog post instead!

The original article had started with a picture of a board outside a coffee shop, stating that customers who went in and said “Small coffee” would be charged $5, those who said “Small coffee please” would be charged $3, and those who said “Good morning, how are you, please could I have a small coffee” would be charged $1 (or something like that – the values and exact statements might have been different, but the sentiment is the same). The point of the article was that baristas work damn hard for very little money and that they are, apparently, grateful for recognition in the form of people saying please and exchanging the kind of small talk pleasantries that strike terror into the souls of those of us who are neurodivergent.

And so, of course, the article had been picked up in a number of neurodivergent groups and cited as “ableism”, and I eventually decided to share it on my wall despite the potential for triggering and using up valuable spoons and energy dealing with the fallout of all those who might accuse me of being rude and having no manners. I shared it with my own short commentary added to that of my husband, who had also shared it. The gist of what I said was “This is the sort of thing that would seriously put me off even going for coffee on days when I’m struggling to cope. The message I receive from it is that the world is not for me. I should stay home because people think I’m rude. It makes me feel like giving up on life” and the gist of what my husband said was “This is why the neurodivergent and those disabled by mental ill health can’t have nice things. When we have dismantled every barrier, “manners” will remain as the last bastion of exclusionary entitlement. How’s about this – everyone with the neurological privilege to demand good manners start campaigning for baristas to be paid the wage they deserve for being the life-giving superstars they are; and for coffee shops to be accessible to those for whom eye contact or social interaction are as draining as thinking.”

Several of my friends had shared the article without any sort of commentary. And a couple said so on my thread and said that the difficulties autistic or very introverted people might have with such things hadn’t even occurred to them. This was not unexpected – if you are able to speak without rehearsal and remembering to use words such as “please” is something you don’t have to do consciously, with effort, every single time you do it, because you know, for some reason, that people like that sort of thing, then it wouldn’t occur to you that a sign outside a coffee shop telling you that you have to pay more for coffee because you struggle with social codes and so on, would be, on some days, sufficient to make you burst into tears and vow to give up coffee for ever because the whole business of trying to get it was just so stressful and you were so frightened of getting it wrong (and, of course, because you can’t hold down a job because of the same issues that cause such stress over buying a coffee, you don’t have enough money to pay the expensive rate if you screw up and get it wrong, which, given that your anxiety levels are by now through the roof, having read the noticeboard and realized that this is going to be a difficult experience on which you will be judged, you probably will).

So, I got to thinking about this, ironically, on the way home from having a coffee at my usual coffee shop (where, thankfully, I know the protocols and I had enough energy to ask for coffee in an appropriate way and because the place is familiar and I always eat the same things for breakfast there were no decisions to be made or other problems to be dealt with (I have, over the years, frequently gone somewhere to try to access food and gone away still unfed because simply asking for food or deciding what to have was too difficult)). I tried to imagine what it might be like to go out for coffee and to be able to just ask for the coffee with a load of fancy language that you hadn’t rehearsed several hundred times in your head during the drive to the place. I couldn’t, of course. Improvised speech seems like an extraordinary concept to me (and I assumed, until last year, that it simply wasn’t something that anyone did – only when I started questioning non-autistic people about their speech rehearsals on the way to social events and when they looked blankly at me and didn’t seem to understand what I was on about, did I realise that there are people who are able to improvise conversations on the spot without getting utterly shattered by it and having to go home and sleep for hours to recover)!

So I translated it to the area in which I am, rather seriously, privileged. My mental health is poor, my executive functioning is shockingly terrible, and my social skills are either lacking (if I’m saving spoons) or practised and exhausting (if I’m masking and doing what I have learnt over the last 40 years is the “correct” thing to do). BUT, I’m physically robust, and fairly fit, and probably of more than average strength for my age. I constantly use the huge privilege of a robust physical body to compensate for my social and mental deficits – at the autism conference I was able to go all day without eating or drinking properly or going to the toilet (If I’d been diabetic or had continence issues that wouldn’t have been the case). I think nothing of walking or jogging several kilometers which means that I can basically avoid using public transport in everyday life – if I have to park the car several miles away from where I’m going then it’s no big deal – I’m great with maps and I can walk a long way (I can even climb over gates having done 90km in an ultramarathon when I’m at my fittest). If I see a big flight of stairs then my first thought is “Wahey, hill training”. This is all because I am massively privileged as far as physical ability is concerned.

And so, just as my non-autistic extrovert friends don’t notice how intimidating signs about “how to ask for coffee” are to me, I skip around town and bumps in the pavement or kerbs or steps or flights of stairs or any of those things don’t even register on my radar unless I consciously think about them. BUT, I constantly remind myself, and am reminded by my friends with physical disabilities (whether they be things such as heart conditions or whether they require wheelchairs just to get around), that these things can be huge obstacles. Maybe I’m at an advantage here, because it’s easy to visualise how difficult it must be for someone in a wheelchair to deal with a step, but much less easy to imagine how difficult it might be to deviate from your usual script when faced with a sign outside a coffee shop?

I absolutely don’t blame those to whom it has never occurred, because for many of them, how could it have – I know it from the inside so it’s easy for me to understand, and one of the reasons I write this blog is to try to explain to others what it’s actually like and to assist with understanding. I’m also all in favour of people not ACTUALLY being rude to other people. The notion of being rude to someone who’s making coffee for me is abhorrent to me – I’m deeply grateful to them for doing something for me that I can’t do myself and for making my day better with a cup of something delicious. Maybe I’m just not always able to express that gratitude as perfectly as I should, according to the original article, be able to? Maybe this is where my natural language differs from that of many other people – my husband brought me an unexpected kebab last night and I didn’t thank him in words – I flapped my hands at him, because that’s the language we use at home, not the conventional language of society that we use consciously when we step out of the door!

I’m running out of words at this point and have now backed myself into a corner and am also desperately worried that I might have offended somebody because I’m not well enough versed in the language of disability to be sure that I haven’t screwed up. If I have, then I apologise profusely, because, contrary to the implications of the original article, if I get it wrong, I really don’t mean to. My lack of eye contact and social interaction with strangers is, at the moment, the only way I can actually manage to get out into the world at all and do anything – it’s a protection mechanism to prevent my mental health disintegrating further than it already has.

The last thoughts I had on my drive home from coffee this morning were of two of the “risk factors” that have been identified on my report following my autism assessment. One stated that I was at significant risk of being misunderstood and thought badly of because my levels of social interaction might cause me to appear rude, and the other stated that in order not to appear rude I was inclined to make huge efforts to follow social codes consciously and that doing so was seriously damaging to my mental health! Over the years I have, of course, tried so hard to get it right that it has left me burnt out and hardly able to function at all.

Anyway, whatever I might have got wrong here, I got one thing right – this really was a bit too long for a comment on a facebook thread!!!

A Week, Actually!

It turns out to be exactly a week since I wrote the poem in the previous post. I got as far as putting that post together yesterday, but never managed to post it because my functioning let me down and I ended up with a sort of partial shutdown followed by a sort of partial meltdown and abandoned plans to do anything at all except survive.

A pattern is starting to emerge. After some big step up in activity, to a big thing that takes so much energy and generates so much anxiety, the first recovery day is reasonably OK as I’m still just pleased I managed to do whatever it was and I’m still, to an extent, hyped up by having made such a massive effort.

However, the second day is usually the worst, and yesterday, around mid-afternoon, having turned on the laptop to post what should have been yesterday’s blog post, I suddenly felt dreadful and overloaded. It became obvious that I wasn’t up to doing anything at all (by that stage I’d still not even been able to get myself a drink) and I abandoned the notion of either posting on the blog or, indeed, doing anything else on my jobs list. I tried to put it into words and ended up with this:

There’s a certain relief
When I just
Give up.

When I stop trying
To do jobs
Or write blog posts
Or “achieve”
Anything.

I then fell asleep on the sofa for a while, then woke up feeling disorientated and only semi-verbal (I could have spoken if necessary, but forming words was massively hard work).

And I felt low. Not generally low, like some sort of long-term depression, but suddenly low and exhausted, like a shutdown, though it wasn’t a full shutdown of the type I often experience. And I had one of those moments that I’ve not had in a while now, but that were much more common several months ago, where I suddenly felt that life was so very very unfair and I didn’t want it to be like this.

In the absence of anyone I felt I could bother, I ranted into the “Notes” bit of the iPad.

Why me? Why do I have to miss so many opportunities? Tonight I just want to be normal. I want the career I was supposed to have. I want to be able to go out on a Saturday night with friends and not need days to recover. I want to be able to “work hard” and that work to produce success rather than exhaustion and failure. I want to earn my own money. I hate hate hate hate being dependent on other people. I want a proper life. I don’t like having to sit in a darkened room for hours on end in order to recover every time I do anything. I’m bored. Maybe I’m even lonely. Though to be honest I’m so fucking alexythymic that I have no way of distinguishing between boredom and loneliness. I’m so fed up with having so little energy and being able to do so little. I want to work hard at stuff and I just can’t.

And so on and so on and so on. Lots and lots of thoughts of that nature.

I tried desperately to pull myself together and finally got myself a glass of water and a snack, hoping that if I ate then I’d start to feel a bit better. It sometimes helps. But it didn’t really at that point.

I then scrolled through facebook a bit more, hoping for something to distract me. I joined a conversation on a group and because my words weren’t up to much I posted a link to something (on topic) from this blog. Next I knew, the message thing pinged and I had a message from some stranger who was a mod or admin or something on the group – telling me off because hadn’t I read the pinned post and blog links were not allowed and would I go back and edit my comment.

Already low. Already struggling. I burst into tears. I messaged back telling them just to delete me and have done with it. I couldn’t find which group. I probably read the pinned post when I joined, but so many groups, so many pinned posts, so many screens of compulsory trigger warnings, content notes, worrying about pronouns, blog links, not links, this sort of post, not for this group, and so on and so on and so on. I know these things are important for so many reasons, but at that moment I felt old, I felt like someone who grew up before the internet was invented, and I’m still learning, and I can’t learn all this stuff fast enough because my head is so overloaded at the moment. Maybe I should stop posting on the internet at all because I’m clearly an incompetent idiot who can’t even read the fucking instructions properly. I’m wrong wrong wrong. Even online I’m getting the social codes wrong. What hope do I have out in the real world. Maybe I should just crawl under the duvet and stay there until I starve to death?

Remember, this was all going through my head when was basically in meltdown. Too tired even to meltdown properly I just sat and cried.

My brain, meanwhile, was reminding me that this was day 2 after doing something big. Some sort of meltdown in whatever form was inevitable. The incident with the facebook page was actually just the straw that broke the camel’s back (by the way, does anyone else literally have a little snippet of video in their head, like a GIF, of someone putting a single straw onto an already overloaded camel, in which the camel then falls to the floor, its back broken? And does anyone then imagine the work a good vet would have to do to rehabilitate the camel, all for the sake of one measly straw? Or is that just me?), and everything had been building since the weekend, and gradually getting closer and closer as time went on. I’d spent the morning stressed about a post concerning cooking from scratch, which made me feel incompetent and stupid, I’d read another post about how life was too short to moan about things changing, which made me feel disabled because my brain struggles with change, I’d read something about women wanting motherhood and careers, when I have neither, which again made me feel useless to society, I’d failed even to be able to fill the kettle to make a cup of tea, and so my bloody camel was absolutely at maximum loading capacity.

Eventually I calmed down. I hid the group from my feed, poured myself a beer, and sat quietly on the sofa. I had a couple of short chats with a couple of people online, both of which calmed me. I watched the telly. And by the end of the evening things were pretty much OK again and I eventually put myself to bed, having had a couple of longer chats with a couple of friends online (my husband was away overnight, having been out for a late evening).

And this morning my functioning level is improved. I’m in the midst of making a cup of tea, and feel like I probably need to eat something reasonably substantial, having hardly eaten at all yesterday. I might even start to get a few things done.

And I now ask why I’ve written up what happened yesterday. Why have I spent the energy basically recounting feeling a bit rubbish, when my general approach to this whole “being autistic” thing is to be positive?

Maybe just to indicate that it’s not all sweetness and light, so that others who have similar experiences can relate? Maybe to try to convey to those people who see me at my most functional out in the world, and might be tempted to think that I’m absolutely fine, that there is a price to pay for doing the things I want to do? Maybe just because it helps me to sort my head out a bit and to process what happened and to move on? Who knows?

All part of life, I guess. And I said at the start of this blog that I wanted to be as honest about it all as I could. So maybe that’s why? Shutdowns and meltdowns (or the partial versions thereof that I experienced yesterday) are part of the deal, part of the autistic life. For me, they always have been, but now I have the vocabulary and knowledge to analyse them, so that is what I do. And it helps to put a day like yesterday into perspective to be able to look at it rationally now my thinking abilities have mostly returned.

Now I just have to gather enough energy actually to post the posts on the blog! And to put them onto facebook and twitter. And to start to reconnect with the world once more. Then I need to see what are the most urgent jobs that need doing from my list because, as is becoming all too apparent, I have to do what I can when I have the energy in order to get through days like yesterday when the energy simply isn’t there!

A While, Maybe?

I’m still a bit behind with quite a lot of things, including stuff that I’d like to write here. Technically, today should be another rest day after the busy two-day weekend I’ve just had, especially as it’s the first time I’ve been out of the house for most of the day for two consecutive days in a very very long time. I’m also conscious that the weekend was preceded by a busy week and that my head isn’t working quite well enough to say what I want to say yet. The thought to word translation mechanism isn’t running smoothly – it feels as though it needs a drop of oil on the machinery or something.

It was an interesting weekend. Saturday I managed fairly well, although forming words became more and more difficult as the day went on, and by the end of the evening I was finding trying to translate my thoughts really laborious and hard work. Sunday morning was difficult – even my comfiest and loosest clothes felt scratchy and constraining, and I spent most of the day feeling gently nauseous. I never even attempted to remove my darkest sunglasses – even through them it was as though the brightness had been turned up to somewhere beyond maximum, and when I got home it felt as though my entire system was in overdrive. I rocked hard and bashed myself on the back of the sofa for a bit then fell asleep under my weighted blanket, which helped.

But it was a successful weekend. I managed to do approximately fourteen hours of orchestral rehearsal and concert, and both my playing and physical robustness were pretty reasonable. Not as good as they were in the past, but better than I expected in the current circumstances.

There were friends and allies there, including an old friend I hadn’t seen for years, and with whom it was good to re-establish contact. I wasn’t as social as I’d have been in the past, and not as much as I’d really like to be able to be for both networking and just getting to know folks purposes, but since I’m now officially socially inept rather than merely empirically so, I feel rather less guilty about going off on my own to eat lunch, taking a proper break from people now and again, and sitting in a corridor wearing ear defenders, rocking back and forth on my own. This is all OK now, and a great relief too.

I could easily have sat and sobbed about half way through Sunday afternoon, but didn’t. Having an explanation for why I feel so suddenly emotional about apparently nothing some of the time really does make it easier to deal with. Makes it easier to rationalise in my brain. It’s actually OK just to feel wrong sometimes, especially when I’ve been out in the world surrounded by people and noise and lights for hours on end. There’s a reason for it.

And years of musical training help – focus in on the playing, which is what I do, which is why I was there in the first place. In the same way as I went to the autism conference because of the intense interest and need to learn and pursue that interest, I keep returning to the world of orchestral and chamber music playing because I am driven there by that interest and the need to keep doing it and keep learning. Music is probably the longest lived “interest” I have and has persisted throughout my life, only vanishing when I’ve been severely depressed or deep in burnout. Trouble is, orchestras inevitably involve people – so I have to do quite a lot of work (being with people) in order to get access to the playing!!!

The aftermath of the weekend is interesting. I’m very tired. My word translation is off. I can feel myself struggling to say what I want even interacting online. I’m more triggered than usual by things – someone on facebook extolling the virtues of “cooking from scratch” made me really angry (I didn’t comment, just ranted at my husband a bit – he’s used to it). I drank rather more than I should have done last night. I’m still finding sounds too loud and lights too bright. And my executive functioning (ability to get my act together and do stuff) has taken something of a battering, as has my task initiating and switching ability.

None of this is surprising, given that I’d had an evening rehearsal the week before, then the final meeting with the autism assessment service, then stayed up all night watching the results of the General Election as they were announced, and then spent a weekend out in the world. Those things between them have used up nearly all my energy in the past week.

However, what’s different from how things have been for a long long time is that allowing the language system and functioning system and sensory system to decline, and just going with it now I know what’s happening, means that I am not ill after such activity as I would have been in the past. Not making myself chat to people at lunch breaks, spending time stimming quietly on my own, only making eye contact when absolutely necessary, not forcing words in order to “be polite”, and so on, all mean that I’m not feeling that awful “sick” feeling that I’m so familiar with to anything like the extent I would have done in the past. I probably appear slightly “odder” from the outside, but on the inside I’m actually calmer, and also, currently, considerably less depressed.

And I’m tired yes, but not quite so bone-numbingly exhausted as I might have been. Partly, I suspect this is because I’m continuing to recover from burnout, but even though I’m going out into a world that won’t always understand me or the way I work, the fact that I understand myself already removes a whole load of pressure, so this huge internal pressure I’ve always felt to “succeed” is now off.

I realise this is another rather erratic rambling blog post. And I’m still conscious that there are things that need sorting here. I’ve also been sporadic on the facebook page and not had much energy for twitter. I did manage to write one of the “poem things” after the first evening rehearsal though. At the time I didn’t manage to post it, so I’ll include it here.

The outside world,
Even when friendly
And something
I want to do,
Is sometimes
Utterly
Utterly
Exhausting.

Last night
I returned
To an evening rehearsal.
People
Noise
Lights
So. Much. Input.

This morning was spent
In bed.
Mostly asleep.

When I got up
And dressed
My clothes felt like
They were trying
To suffocate me.

It took many attempts
To write a Facebook status.
I have still failed to make
A cup of tea.
Even filling the kettle
Beyond me.

I don’t know how long
It will be before
I have enough energy
To post this
On the blog.

A while, maybe?

Speech Levels

During the days following my first autism assessment, the one that went terribly wrong and during which I was declared “too articulate” to be autistic, I did quite a bit of googling of various things in an attempt to establish whether I really was simply going crazy. I found something posted on a forum somewhere, I can’t remember where, about autism and speech. The person who’d written it described how their speech varied and assigned different speech capabilities “levels” from 1-4. Much of what they’d written aligned with my own experience, and it helped me to understand my speech capabilities and how they work.

I have since thought about this quite a lot and have eventually come to the conclusion that I have 5 main levels of speech. I have very little control over which level I’m actually at, and if I try to force speech when it isn’t there it can make me feel really very unwell – these days, now I know what’s going on, I force it less and less, just accepting that my speech isn’t always as it might be expected to be – it’s no big deal, and just allowing it to be as it is (or, indeed, isn’t) is actually starting to allow my health to improve somewhat, even though it makes things a bit more awkward socially.

Interestingly, my husband has always said that when I’m ill or tired or really low and depressed my speech becomes monotone, so I evidently have noticeable speech difference even just in tone of voice at these times, especially once I’m home in a safe environment and not deliberately trying to inflect my voice in the way that I know I should from years of conscious learning. The assessor who diagnosed me as autistic also picked up on the fact that I don’t have the sort of variability in vocal modulation that might be expected – and my range of vocal expressiveness is much more formulaic and limited than most people’s. I, of course, had never noticed this, since my normal has always been my normal!

So, what are my five levels of speech?

Level 1
Fluent easy speech. As far as I know, this level of speech would appear totally typical from the outside and nobody would guess I had any speech issues at all (except, maybe, that I might appear exceedingly confident and dominate the conversation). It feels natural and not difficult and doesn’t use much energy. It might, I suspect, occasionally be a bit too fast, loud, or intense (this, I have been told by others, and I have always linked to the hypomanic phases of bipolar disorder in the past), and it’s more the sort of speech that I use when recounting a story, giving a lecture, or telling someone about something that’s already formed in my head or about which I am knowledgeable and confident. It hardly ever happens if there is interaction with anyone else, and it can be disrupted very easily if anyone stops me, interrupts me, or asks me a question. But the words flow just fine and it doesn’t feel difficult or use a lot of conscious energy.

Level 2
Fluent difficult speech. To the outside observer, I expect this level of speech appears exactly the same as does that of level 1, and, again, nobody would guess I had any issues at all. However, once interaction with someone else happens and I have to listen and interpret as well as talk, or I’m forced to start improvising and talking about something I hadn’t prepared for, from the inside it feels like much much harder work. Being able to continue to sound fluent and remembering to inflect my voice and use the right sort of language and so on is extremely tiring. Once I start to tire I’ll often get quieter and contribute to the conversation less. This is the sort of conversation that feels very different from the inside, but gives very little away to the outside observer. It’s probably formed the majority of my interactions with other humans over my lifetime, and although it serves me well socially and gives me quite good abilities in many ways it often makes me feel dizzy and sick, and if combined with sensory overload can often lead to meltdown if I try to maintain it for too long. It can leave me utterly exhausted, and the effort of producing it often means I need a full day to recover from the exertion of a fairly ordinary social occasion.

Level 3
Idiosyncratic speech. This is still good enough that I can communicate effectively, but, moving from level 2 there would be a number of slight oddities that could be noticed from outside. My word order sometimes gets mixed up (I can hear it as it emerges), and I start to substitute words for more readily accessible ones – I might, for example, be unable to think of the term “extremely bad” and say “very very very not good” instead, simplifying vocabulary. I’ll also simplify my tense structure somewhat. I’ve spoken like this within my own home and to close friends for years, but have usually tried to maintain level 2 out in public. At this level I also often leave out words such as “please” and “thank you”, because I am using speech purely for communication and someone like my husband knows that they are meant and I don’t need to use the extra energy to say them. My best friend informs me that he has heard many examples of this sort of speech over the last couple of decades. It has always simply been taken to be me being a bit eccentric or quirky, or even as some sort of humour. It is easier than maintaining level 2 though, and once I get to a certain stage in any sort of public conversation I will, again, simply be quiet.

Level 4
Fragmented speech. At this point it’s fairly certain I’ll eventually lose speech completely, but I CAN still talk, albeit in a way that is unmistakably atypical. I can use single syllable words, or sometimes ones with two syllables (but slowly). I will usually give up worrying about tenses, and there will be no noticeable sentences. It is the most basic spoken communication, but it’s sufficient for me to say, for example “drink” to someone and to get a drink. It is, however, really really effortful. Each syllable has to be deliberately constructed, consciously and with great care, as if learning a brand new foreign language. It feels like there is some sort of faulty connection in my head, and that connection is failing. If I need to communicate anything other than the most basic information at this point I will be typing on my phone and the person with whom I’m communicating will need to read what I’ve typed to really understand what I’m trying to tell them.

Level 5
No speech. This is when the words are gone. Just gone. If I open my mouth and try to make words, I cannot. It’s not a choice. It’s not even, like in levels 2 and 3 above, a strategy to maintain my energy levels. I can still make sounds. I can still hum tunes (wordlessly). But I cannot produce speech. It’s as though the connection between my brain and my mouth has been unplugged. I can usually still type perfectly coherent language (there is a disintegration of typing language sometimes, but it is much rarer) and all my communication will be by facebook message or typing into my phone or some similar method. However, even when I cannot speak at all and am totally mute, I can usually understand what is going on around me just as well as I can when my speech is at level 1. There is no loss of thoughts in my brain, no issue with being able to formulate arguments or learn or think or anything else. The thoughts are all there – I just cannot articulate them via my mouth. “No speech” is very much not the same thing as “no thoughts” and unless I am so deeply shutdown or in the midst of a meltdown or other crisis, I will be absolutely aware of what is going on around me – just not able to respond with speech.

So my speech varies between “articulate” and “nonverbal”. It’s not as simple as an either/or, but is a sliding scale, and I move between the levels fairly often, depending upon my level of tiredness, my mood, my circumstances, who I’m talking to, and what the sensory environment is. Most of this movement is beyond my control – if my words start to fragment and depart there is nothing I can do about it. I have, in the past, maintained level 2 rather heavily as part of my mask – the price for doing so is quite sizeable and leads to situations such as that described in Sudden Illness. It also results in the immense exhaustion I’ve felt over the years, and I’ve found that just allowing myself not to worry about speech and to let it ebb and flow as it naturally does has already helped my health and energy levels enormously. There is a sense of inner peace I get once the words completely go, a sense of calm, recharging, and stopping fighting.

In the past I didn’t know why, but I knew that once the socialising had finished, once I stopped trying to talk to people, once I went home from the restaurant after an evening sitting outside on the pavement, shaking and feeling terribly ill, once everyone else had gone home and it was just me, I breathed a sigh of relief and started to feel better. I always got a certain feeling, one that I’m still struggling to describe, but I can identify very easily, once I was alone and starting to feel better. It’s only recently, as I’ve been seriously experimenting with trying to speak, that I realise that is the feeling of speech being gone. Maybe one day I’ll be able to describe it a little better.

As I said in the previous post, this is still something I’m trying to analyse and to figure out. I’m still working on how I communicate to the rest of the world that speech is often either very hard work and requires intense concentration or is not possible at all. The amount of time I spend at each of the five levels I’ve outlined above is still fluctuating as I continue to adapt to my changed life and as I continue to recover, slowly, from the burnout that was already starting around a year ago. This is very much an ongoing process for me.

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.

Circles

Amazingly, this is my 100th post on this blog. When I first posted to it, last December, I didn’t know whether it would ever get beyond The Discovery, and it was really just a convenient way to let people know that I had discovered I was autistic. In the last four months the blog has seemed to acquire a life of its own, and, from time to time, a few people seem to read it. I can hardly believe that it’s only around eight months since the idea of my being autistic was even suggested – in that time I’ve learnt so much about myself and my life and just how much being autistic has influenced me during the last 45 years.

One of the criteria for receiving a formal diagnosis of “autism spectrum disorder” under the current system is that autistic traits and behaviours need to have been present throughout life (because autism is a lifelong condition). Consequently, the diagnostic process involves a lot of looking back through life and, particularly, back to early childhood. I’m fortunate enough to have a mother with a good memory who is still alive and was able to supply me with lots of information about my early life (I’ll write more on that another time), and it has been interesting to discover what she remembers about my childhood and how it relates to my own memories and experiences.

I’d like to indulge, if I may, in a little imaginary time travel, back through my life, to what, for me, has become an important point as far as my life as an autistic person is concerned. I start from now, 2017, when I am 45 years old, newly diagnosed, and slowly recovering from an episode of burnout. As I go back through my life I think about the 39-year-old receiving a diagnosis of bipolar disorder, the 36-year-old who still couldn’t cook a meal, the 33-year-old who got randomly ill on holidays, the 29-year-old who spent nights bashing their head against the wall and drank bottles of whisky and ate packets of pills and hoped never to wake up again, the 26-year-old who sat at their desk trying to write their doctoral thesis while feeling like they were in a bubble and the world was unreachable, the 23-year-old who graduated top of their class but who ate the same thing for dinner every night and drank alcohol before breakfast every morning, the 19-year-old who couldn’t learn from lectures and dropped out of their first degree, the 16-year-old who was still being bullied at school and whose best friend was a cat, the 13-year-old who was routinely pinned down on the floor of the toilets by the other kids, the 9-year-old whose headmaster thought they were being abused at home, and, eventually, my time travel stops in a primary school in Bradford in 1975, where a little girl sits on the steps of a temporary classroom, crying.

The little girl is crying because it is playtime and she hates playtimes. She hates small children. They are noisy and they run around all over the place in a disorganized manner, and some of them step on the cracks in the pavements which means that very bad things will happen, and they are mean to her and some of them eat sweets in the morning which is against the rules, and so she cries, and she waits, desperately, for playtime to finish, so that she can retreat to the safety of the classroom where there is a teacher who might protect her, and where the children sit down and where it is quieter.

I know these things about the little girl, and have always known them, because I remember them. I remember many things about being 4 years old, but, as I started to question my mother, I discovered that there were things about my 4-year-old self that I didn’t know. One of these was that my teacher summoned my parents to school because she was concerned about me. I didn’t interact with the other children, and, most particularly, I wasn’t learning to write. I just sat and made my pencil go round and round in circles, filling page after page with scribbled circular patterns. The teacher said she’d never encountered a child like me and didn’t know what to do.

Finding out about this “circle drawing” was the first of many rather surreal discoveries about myself that I’d never have made if I hadn’t started asking questions because I was gathering information for an autism assessment. It shocked me somewhat, and I felt a huge sadness for that frightened stressed little kid, trying to withdraw from the world into something comforting, trying to survive in what felt like a very hostile environment. I cried many tears for her, because I couldn’t go back in time and help her, and I knew what she would have to go through before she finally understood why life was so tough. Just after diagnosis I wrote the letter below (complete with muddled tenses) to her, and during the information-gathering stage I went to a shop and bought pens and paper and drew circles and coloured them in. Because that was all I could do.

You will now realise why the “profile picture” on this blog and on the facebook page is what it is, and why I chose that particular picture for the post in which I revealed publicly that I am autistic. Today’s picture is from a similar, but different, drawing of circles.

The most important question I had for my autism assessor during my follow-up appointment was something like this: “If I had been 40 years younger, would I have still been receiving an autism diagnosis at this point in time, i.e. in 2017?” Her answer was that I would have. And she went on to say that, with the knowledge of the present day, the point at which I would have been identified as autistic would have been the point at which I went to school and sat on my own drawing circles and my teacher was concerned about my behaviour to the extent that she summoned my parents in to discuss it. That coupled with things we know about my behaviour at nursery the previous year, and various other things during my early development, would have triggered a diagnosis.

For some reason, knowing that, if I were 4 years old today I would be being diagnosed autistic, as a 4-year-old, is important to me. I have tried to think about why that is, and I came to the conclusion that the diagnosis my 45-year-old self received in February, although it covers my entire life, is a diagnosis for the future, for planning, for strategies, for rebuilding my life. The “diagnosis” my 4-year-old self received, retrospectively, in the follow-up appointment yesterday is, for me, the diagnosis that starts the process of making peace with my past – it feels like some kind of justice for that distressed little girl, crying on the steps of the classroom.

Of course, the other reason that age 4 is so significant for me as far as being autistic is concerned is that, as I started school and had to work out how to survive, it was the time I started to mask. It was the time that I started to learn what to do by watching other people, teaching myself to interact with other human beings. The social codes that came so naturally and intuitively to most others, who sought out human contact, were things that I had to learn through a cognitive process. I’m only just beginning to understand this, and how it has impacted my life. Being undiagnosed protected me from being “written off” or “cured” or whatever, but it meant that I worked fearsomely hard to try to make the world work for me and expectations were made of my abilities that I simply couldn’t fulfil. I believe the damage to my mental health started around that time – as an undiagnosed 4-year-old trying to fit in, learning to sit still, learning to socialize, and to do as I was told to avoid punishment, I was storing up the trauma that would eventually result in decades of mental illness and suicidal ideation (which switched to active attempts to end my life in my late 20s).

I’m certain I’ve mentioned it before, but one of the things that is so interesting about an autism diagnosis later in life is that it not only suggests strategies for coping with life better in the future, it also makes sense of the past. I cannot change the past, obviously, but getting the “diagnosis” for my 4-year-old self is another step in accepting it and understanding it.

Dear Four-Year-Old,

I was talking about you recently, to some nice people.

I was remembering what it was like for you at playtime at school. I was telling the people about the three big girls who used to be mean to you, and how noisy it always was at playtimes, and how much you wanted to get back to the safety of the classroom where there was a teacher who might protect you from the other children, who were frightening and who you didn’t want to be with.

I was also talking to your mother recently. She was telling me how she and your father were summoned to school to talk to your teacher, because there was a problem. In fact, there were a few problems.

I know you could already read very well before you went to school, and the teacher wasn’t very pleased about that, because she was supposed to teach you to read but you already could. She wasn’t very happy with your parents, who had supplied the books.

I found out from your mother that your teacher was concerned because you weren’t learning to write, like the other children were. Instead of writing you just sat and made circles in your writing book, using up all the paper, and any other paper available. Your teacher said that she had never met a child like you, and she didn’t really know what to do. Your parents didn’t know what to do either, so it was decided that you would not be allowed any more books so you didn’t damage them or use up the paper by drawing circles on it.

I know where you lived. I remember the street. I also remember that some kids from the street let your Space Hopper down and you were really unhappy about that because you loved bouncing up and down the street on it. And even though there was a man who worked at the garage and took it to blow it up again it wasn’t quite as bouncy as it had been before, which was sad.

I could send this to your address, which I still remember well, even though you only lived there briefly. But it would never reach you, because the mail can only go forwards in time, normally a few days or weeks. It cannot go backwards 41 years, which it would need to to reach you.

Neither can I come back in time myself, because there is no time machine. But if I could, I’d talk to your parents and teacher. And I’d try to explain that you are a bit different from most other children, and I’d give them a list of things they might look out for, and I’d work out what they could do to try to help make your life a bit easier, because I know that your life turned out to be very very hard in so many ways.

I’m not sure how convincing I’d be. A crazy person from the future, nearly as old as your granny is in your time. And, of course, there would be so many problems anyway because most of the information I have now is from books that will not be written until decades after the time you live in. I have a magic machine that allows me to read lots and lots of information about kids like you, but it won’t work in your time, because it relies on things that haven’t been invented yet.

If I could come and see you I’d try to protect you. I feel sad that you had to go through what you did, and I feel sad that your life was so hard and nobody knew how hard it was. I’d like to tell you that it got better soon, but I can’t, because you have many years of really hard stuff still to go through and many many tough times ahead. Life will be harder than you can even imagine right now. I’m sorry I can’t do anything about that, but you will find a way through, and eventually you will find out why it is like that.

But I would pick you up and hold you tight and tell you that you will, sometimes by strength, sometimes by accident, find a way to keep going through it all for at least another 41 years. There will be things that will help – your parents will not really understand you and they will not know for a long time that you really need extra help and support, but some of the things they do will help anyway. They will continue to supply books, which will help. They will get you a friend who is more comforting than any school friend could ever be, who will have soft fur and will purr for you. And they will let you do some of the things that make life feel better to you.

You know that recorder? The one you chew (yes, I know about that – I’ve still got it somewhere, and your teeth marks are still on the mouthpiece), keep playing it, and the other musical instruments you will learn in the future, because they will be really important to you. Keep reading and keep learning all the other stuff too – being interested in things and learning things is going to be one of the ways you survive in the world.

I will never be able to tell you this, but in 41 years time I will find out about the circle drawing, and I will draw some circles for you, because that is the best I can do for you. Because I am grown up now I can buy lots of really nice paper, and loads of books, and felt pens, and I can draw neat circles now and make patterns and colour them in – you’d have loved that!

When I finally tell the nice people all this, and I tell them about you and about all the other things your mother has recently told me, they will finally understand. And they will tell me some information that will explain why your life didn’t work out the way it was supposed to.

I can’t come back in time to care for you, or to explain. I wish I could.

But I will eventually find out why it all happened as it did and I will discover what makes life so hard for us. There is a word that describes people like us, even though nobody will apply that word to you in 1975. We are autistic.

The nice people listened, and heard all about you, and about the person you became, and they told me that my discovery was correct. You had a different sort of head. I have a different sort of head. We were never designed to fit into the world in the ordinary sort of way.

Stay strong little person. You will survive, and in 41 years you will understand. And you will finally be listened to and believed. And it will make life feel better and you can start to work out how to make an easier future.

See you in 41 years’ time!

A Forty-Five-Year-Old from the future

P.S. In 10 years’ time some girls at school will tell you that you’re too ugly to get a boyfriend. They are lying. You find someone who understands you perfectly and you will have a wedding with really nice cake!

Strategy Deployment

Yesterday I went out again, to something social, where I met quite a lot of people, and where I was out of the house for quite a lot of hours. I went to an afternoon symposium, a series of lectures, then to dinner, once again in my old college.

I employed similar planning strategies to those described in Out to Dinner: a couple of days’ rest beforehand, comfortable clothes, stim toys, dark glasses, and plans for an easy couple of days afterwards so I knew that I could take my energy levels into the red zone if necessary because once I was home I didn’t have to do anything at all except breathe (and that’s something that usually happens without my having to think about it).

Additionally I took some attenuating ear plugs (originally bought for potential use in noisy orchestras and recently discovered in a pile of stuff) and my recently acquired ear defenders, just in case I found a way that I could usefully use them.

It was an interesting afternoon and evening in many ways. It was interesting in the ordinary way in that I learnt some stuff from each of the lectures. I also saw several people I hadn’t seen for a few years, and some others I’ve seen more recently, and it was good to catch up with them. And, of course, it provided me with an opportunity to continue analyzing what I can cope with when I’m out in the world, and what I can’t.

Apart from the dark glasses and slightly more casual clothes than was the norm, the first thing that might have been described as slightly out of the ordinary behaviour was the way I sat during the lectures. I took my boots off and sat with my feet tucked under me, my legs up close to my body, in various formations throughout the afternoon. I nearly always sit, by choice, in some variant of this position.

Very interestingly, I went to a similar symposium in that very same lecture theatre a couple of years ago. I remembered sitting in exactly the same way. I wasn’t wearing dark glasses, but my clothes were still slightly more casual and I sat with my feet tucked up under me in the same way. And that was years before I knew anything about autism, about the beneficial effects of “pressure stimming” (I still have a whole blog post to write about that stuff sometime), and before I realized that I was doing something, perhaps a bit socially out of the ordinary, because that was something that my body needed to do in order to feel OK.

(As an aside, I made no other adaptions on that occasion a few years ago – and I remember it being one of the nights that I woke up in the small hours afterwards feeling sick, shaky and very very wrong – that was always the norm for me after such events. Now things are changing.)

My first real break with “doing what everyone else was doing” was at the tea break between sessions. I used the strategy that I’m now getting used to during the breaks of orchestral rehearsals – get myself a cup of tea then get out of the room with the voices and the noise and the crowds of people as quickly as possible. I went to stand outside in the quadrangle. I was joined by a friend (the one mentioned in the first sentence of Out to Dinner), who gave me a biscuit (a good idea, since I hadn’t yet managed to eat) and asked whether I was OK with him being there or whether I needed to be alone. Since I’m comfortable with him and he knows what’s going on in my life I was happy for him to stay. It wasn’t difficult out in the cool air away from the artificial lights and the noise of too many voices.

When we went back for the second session I knew that my senses were already beginning to tire as the sounds of the voices of those speaking seemed much much louder than they had done during the first session. I decided to try the earplugs. They helped. And not only did they help with reducing the volume of the speaker’s voice to a manageable level, but they really really helped with one of the most painful noises of all – applause. I’m now trying to work out whether there’s any way I can use them in concerts, because applause is a sound that I’ve always found, at best, unpleasant, and at worst, really very painful.

I also felt perfectly justified in wearing something in my ears to alter my hearing perception because there were several in the audience also wearing things in their ears – though they were trying to enhance their hearing and I was trying to reduce mine!

Interestingly, I also looked round to see what other people were doing in terms of stimming. I noticed someone rubbing their hands, someone playing with a pen, and someone jiggling their legs and playing with the hem of their trousers! I’m noticing all these things much more nowadays (again, there’s a whole blog post to be written about this – I have so many things I want to write about, but I can’t make all the words at once)!

After the second session there was a drinks reception in a very reverberant space. I stayed for only a few minutes because I knew it was seriously overtaxing my system. I left everyone else to it and went outside and sat on a step, rocking, in the twilight (and the freezing cold – really should have taken a coat) and put my ear defenders on. I was there for maybe half an hour until the cold got the better of me and I ventured back inside, still wearing my ear defenders, and eventually found a couple of friends and we headed off to dinner.

That time alone, cutting the world out, making everything as silent as possible (not completely silent, but significantly better), and stopping all interaction or worrying about sitting still, really really helped. I would have liked to be at the reception. I would have liked to have been drinking wine instead of elderflower fizzy stuff, I would have liked to be networking, chatting to friends, catching up with everyone, looking at the exhibits and so on, but I am learning that this is the sort of thing that I need to ration very very heavily in order to be able to stay well. This is one of the ways in which I am, perhaps, most disabled – I cannot take part in events such as noisy drinks receptions for any length of time unless I accept that it will have a seriously negative impact upon my health. I have long known that parties and so on tire me beyond belief and cause me to become seriously unwell afterwards – I do at least now know why and I can start to control things a bit.

Refreshed from my “time out”, I was then able to go into dinner, chat to people around me with some confidence, and to spend an evening in the Common Room, which actually turned out even to be enjoyable. My best friend ensured I was sitting in a reasonably advantageous position at dinner (as close to a corner as possible to avoid sensory input from all directions), I took care not to over eat, as before, and later, when I started to feel slightly dizzy and unable to comprehend words while standing and increasingly failing to take part in a group conversation, I went to sit down. I’ve also discovered that I find conversation much easier when I’m seated – If I’m not using energy to stand then I have more available to be able to convert thoughts to words!

So this week’s “event” went well. It was also easier than previous times doing similar things have been. I suspect this is partly because I’m starting to see a bit of recovery from burnout, partly because I have a new-found confidence following my diagnosis (more on that in a future post), and partly because I’m learning what strategies work to help me get through such an event without ending up sick for days afterwards.

Admittedly, I had to adapt my behaviour quite considerably yesterday, I didn’t get out of bed until after 2pm today, and I wouldn’t have been able to hold much of a conversation this morning (I tried a little speech earlier but it was really hard work and since I’m here alone I didn’t even bother using that amount of energy for anything more than experimental purposes), but it’s progress. It’s working out how I can best function in the world and get the most possible out of life without destroying myself in the process!

Looking at Eyes

I was chatting on Facebook messenger with a friend of mine. We’ve been friends around 5 years, and she is probably, after my husband and best friend, the person I see most regularly in real life.

“So what colour are my eyes then?” she asked.

I paused for a moment, thought about her hair, which she dyes dark red, and it seems to match her skin, so I guess that before she dyed it it must have been dark. “Brown!” I respond.

“Er, no, they’re blue actually.”

She then asked me about the eyes of a mutual friend who I also see quite a lot in real life. Even darker dyed hair. I was confident about this one. Much more obvious. “Definitely brown,” I said.

“Nope, wrong again, she’s another like me with dark hair and blue eyes, except that hers are greyer than mine.”

I really wasn’t very good at this eye colour game. So far 0/2 on the eye colour score!

“Her mouth wiggles a bit at the corner sometimes and your teeth point inwards,” I proffered, in an attempt to show that my observation skills weren’t completely up the spout and I hadn’t been ignoring my friends for the last 5 years!

She laughed! And told me that this was further proof of her observation that even before I had the slightest clue that I was autistic my eye contact skills were, at best, somewhat idiosyncratic!

***

I was in the kitchen with my best friend. He asked me if I knew what colour the eyes of a mutual friend of ours were.

I thought about it. Our mutual friend has grey hair. I think it might have been dark when he was younger. Somehow I couldn’t quite imagine what colour eyes he might have though.

I admitted I didn’t know, and that if someone really needed that information from me then the only way I could supply it would be by looking at a photograph.

***

I mentioned eye contact in an earlier blog post. A discussion ensued on my Facebook wall. Somebody I went to school with between the ages of 13 and 18 commented on the discussion. She clearly stated that she remembered that whenever she looked at me I would look away very very fast. She said she thought at the time it was something that “clever people did.”

***

My husband says that when I do look in his direction I then don’t look away when most people would. He says it’s as if I point my eyes in that direction and then just forget and leave them there. It always slightly freaks him out!

***

So, it seems that I have been “faking it” as far as eye contact is concerned, probably all my life. I’ve certainly never been able to glean information about the state of a person from their eyes, beyond such things as closed = maybe asleep, or tears = maybe sad or happy. I’ve also observed that even when watching television I don’t look at eyes. I go through my life and think of people I know or have known quite well – relatives, friends, former colleagues. I cannot picture what any of their eyes look like. I know they must have eyes, but I cannot visualise any of them. But I can easily visualise mouths and noses, and, in some cases, ears.

This faking really has been fake. Even when I’ve apparently been looking at eyes, I haven’t taken in any information about them. I cannot picture what my own mother’s eyes look like. Not a hope.

This is still news to me. I wasn’t aware of anything beyond remembering instructions given to me as a child, probably by schoolteachers (I can’t remember) saying “Look at me when I’m talking to you!” So I did as I was told. For the next 40 years.

So why have I been faking it? Why is looking at eyes so weird?

I believe that the schoolteachers probably wanted me to look at them because they thought that it was an indicator that I was paying attention (which it wasn’t – I was, and still am, perfectly capable of paying attention to what someone is saying without looking at them – probably rather better that way in fact). I have also looked at fellow musicians when playing chamber music and so on, and again I think it’s just a sign to people saying “I know you’re there, I’m listening to your part, and I’m paying attention.” It doesn’t actually help me to pay attention, but I know that people think you’re paying more attention if you look at them. It’s a learnt fact and a practised technique. It’s been a large part of the mask. But as far as communication is concerned it’s meaningless to me except to show that I’m paying attention.

And, it seems that while I’ve been faking some sort of approximate eye contact I’ve been using massive amounts of energy to do so (as described in An Experiment) and been pretty much avoiding the real thing whenever possible.

And all this while not even knowing I was autistic. I had no reason to avoid eye contact. Not anything tangible. But I did this fake thing for decades. So it was obviously something that wasn’t quite comfortable for me.

And so recently I’ve tried to describe what actual eye contact (from the few moments it has happened unavoidably and sort of by accident, when I haven’t moved my gaze fast enough) actually feels like to me.

And the best I can come up with is that it feels a bit like being naked in public in front of an audience somewhere very very important and totally overwhelmed in a way I can’t describe, and a bit like being poked with a sharp stick.

Which, when I put it like that, explains perfectly why I’ve faked it all my life and why I will now only even attempt it when absolutely necessary. Eye contact might be some wonderful communicative thing in some people’s worlds, but in my world it’s just rather creepy and uncomfortable.

I’m eccentric, but not “get naked in front of an audience until my brain explodes” and “be poked with a sharp stick” sort of eccentric!