Still Very New

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

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

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

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

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

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

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

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

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

Balance.

Difficult.

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

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

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

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

Autistic Haikus

So this morning my
Executive functioning
Is rather broken

Yesterday speech was
Not coming so easily
As it sometimes does

I forget to eat
And I am very rubbish
At preparing food

Looking at eyes of
Most people is not helpful
And feels pretty weird

If I try to be
A non-autistic person
I get exhausted

Sometimes my head can
Have a disaster and ex-
Plode into meltdown

Strip lights are evil
And should be banished from the
Surface of the Earth

I remember things
With patterns and pictures and
Short films in my head

I am not good at
Sitting still or on a chair
Movement is better

My fidget spinner
Is one that glows in the dark
It is very cool

The fridge is sounding
Very very very loud
To my good hearing

Not knowing for years
I was autistic has bro-
Ken my mental health

Learning stuff is cool
I get interested in
Things rather strongly

As a kid I chewed
My school tie but now I have
Proper chewy things

Conversations are
Often rather hard for me
To initiate

I flap my hands and
Flick and twirl my fingers when
I’m stressed or happy

Being diagnosed
Autistic at forty five
Is a big relief

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?

Leaving Home

I know I must be terribly terribly ill.
I feel dreadful, sick, and panicky.
Maybe I should cancel? Not go?
Send an e-mail. Say I’m unwell.

Why did I agree to this?
A stupid moment of madness?
What possessed me to think
That I could go out into the world today?

I sweat, and my heart pounds
As though I had been training hard.
Everything gets louder and brighter
And my mind can’t focus on simple tasks.

I work though the list,
Checking that I am dressed appropriately,
Forcing myself to eat, a crumb at a time,
To avoid an energy crash later.

My shoulder aches and I am certain
That it is damaged and injured.
Just like my legs always are
A few days before I run a big race.

My brain fights back.
These injuries are manufactured in my mind
I know that, just as I know they will vanish
And be forgotten once I get home again.

When the sick feeling subsides a little
It is replaced by utter utter exhaustion
As though I have not slept
For months on end.

I struggle to move or to motivate myself
Again, my brain fights back.
I know these feelings because
They have been normal for as long as I can remember.

There is, of course, the risk that I won’t cope
And will end up in tears on the floor,
Totally melted down
Unable to function.

Maybe the unpredictability
Of my coping mechanisms
Is what leads to such huge anxiety
Every time I try to leave my home?

Maybe the effort of fighting the anxiety
Makes it even worse
And uses up even more of my
Scarce energy?

All I know how to do is to continue
To live with it, as it is.
As I always have,
And probably always will.

I always assumed that everyone
Went through this same process
Every time they left their homes.
I still do really, because it is so normal.

But my only alternative is to give up
To stay at home for ever,
And never to take up opportunities
That so often lead to good times.

So I keep going, and live with what is
Because I like to play music, to run,
To see the outside world,
And to spend time with friends.

And my brain continues to arbitrate
In the debate between
Anxiety and low energy on one side
And continual FOMO on the other.

An Event

I sit at the back, in the corner,
Quietly rolling the ball on my fidget cube
While my leg moves, involuntarily,
Hardly noticed by me.
Maybe I rock?
I can’t remember.
Since I stopped actively preventing what feels so natural
I am not always conscious of it,
Just like I do not always observe my breathing.

The parquet floor reminds me of years
Spent in public buildings.
I adore this pattern and its pleasing geometry.
It calms me.

They read poems, the poets, proper poets.
The theme of the evening – mental health.
Bipolar disorder all over the place.
I almost wonder if anyone in the room has not experienced
That wild fluctuations in mood and behaviour
That so many of us do.

My own system is on high alert.
It has been for hours.
I nearly didn’t make it.
Mid afternoon I felt so anxious, so unable to cope,
That I thought my entire being would shatter into a million pieces from the strain…
Like the glass panel in our sitting room did, ending up like crazy paving.
But 15 minutes beating my head against a cushion
Helped.

I sit, my legs now folded up beneath me, playing with my hair.
Machinery from the coffee shop behind me a persistent aural backdrop.
Traffic noise, horns, bicycle bells, the sound of footsteps in the street below.
British history books in my line of vision.

And words. Surrounded by words
(Not just the ones in the books,
But the loud ones, in the air).
I know I have to listen and make pictures from these words
Because there are no subtitles at a live poetry reading.
Maybe I should have acquired books of the poems at the start.
Never thought of that.

They speak well.
This is all good stuff. Mental health awareness.
Yes yes yes. It is. This is right.
So much of my own experience described.
These people know. They talk sense.
And it’s like they have been inside my crumbling head…
They have taken the same medications, felt those same effects.
I relate to what is said, even though I cannot say.
I would contribute, but my words are drying up.
There is open mic
(But no actual mic – so open air?
But we are indoors. Oh confusion!).
I stay silent. I am not a poet.
I leave the poeting to the poets
And the writing to the writers.
I am a foreigner in this world.

Afterwards, people chat.
I feel it, the heat, the familiar nearly nausea, as the sound of talking starts to overload my system.
The beads of sweat start to trickle down my back, just like they do every time I go shopping.
I retreat round the corner
And focus on the Russian history books.
Ivan the Terrible, Catherine the Great, Peter the Great.
Romanovs, Rasputin.
Trotsky, Lenin, Stalin.
Gorbachev, Putin, Litvinenko.
I am bizarrely fascinated by Russia
So this is a good place to be.
I covet a thick volume on Rasputin.

My husband finds where I am hidden.
I hug the poets, friends of mine, known online for years, some only just met in person.
All I can tell them is “Yes, all the things, yes…”
Or something like that.
I hope they understood what I meant.

As we get into the car I speculate that folk didn’t seem to mind me being there.
He makes some comment about me being the person in the dark glasses.
I had totally forgotten I was even wearing them.
I’m so used to that part now!

By the time we get home making words is difficult.
Exhaustion engulfs me.

But I did it.
Gradually working out
How to be in the world again.

But in this new life I am going out there as myself,
No longer pretending to be someone else. The act is gone.
It is all new.

Takes time
To adjust.

Also Remember

Sometimes I am too tired
And cannot always
Summon up
The energy
To release
The tension
By moving
Rocking
Bashing.

Sometimes it doesn’t quite work
And the safe strategies
Will tip over
Into less safe ones
And I want to hit my legs
And tear my skin
Because I need more
Than movement alone
And safe bashing
Can provide.

But I must also remember
I have a heavy weighted blanket.
Over eight kilogrammes
Of reassuring pressure
That I can place over me

And when I return
From the third day out in a week
Exhausted,
Unsettled,
Desperate to feel better
Somehow.

I can crawl under my blanket
And feel calmer
And better
Anxiety subsiding
Nausea retreating
The urge to hit myself
Disappearing

And I am still
And calm

Grounded
Reassured.