Also Being Autistic

Bizarrely, the point made in the last post, that I find it hard to imagine how life could be good again when it’s bad and hard to imagine how it could be bad again when it’s good, was proven when I finally clicked publish on that post and immediately felt a weird sense of dishonesty.

I wrote the post a few nights ago, in one of the good phases, put it onto the blog site in draft, and numbered it to be posted next. But by the time publishing time came, I was struggling again, and it felt a little weird to post something so unrepresentative of my current state.

I also suddenly worried that I’d equated lack of social imagination with lack of empathy. If I did, then I didn’t mean to – I’m still trying to figure all this out and this blog is a learning and analysing experience for me as well as something for others to read if they wish to. I still need to find proper words to describe all these things better. I still need to organise and structure my thoughts better, and I’d like very much to be able to explain all these terms properly.

This constant back and forth, constant switching between feeling wonderfully neurodivergent and fabulous and relieved to have discovered who I really am, and feeling frustrated at how limited my life is and how difficult I find things, is still characterising my life quite strongly at the moment. I described some of the effects this has on me in Oscillating, and it continues to be true. I suspect it might continue to be true for some time to come.

The warm fuzzy feelings in Being Autistic are real. I AM happy to have discovered my neurology and to have solved so many mysteries from my life. I have no issues with people thinking I’m strange, or with stimming in public, or with stigma from anyone immediately around me (I realise this makes me massively privileged – when my friends see me flapping my hands or rocking back and forth they don’t tell me to stop, they just check with me that it isn’t an indication that I’m in any sort of distress). In many ways it’s all good. Lovely stuff – stick on the dark glasses and ear defenders, take my phone everywhere in case my speech fails, carry on with life. Proud autistic stuff, rainbow infinity symbols, stim toys, clothes without labels, and not a worry about what society thinks. Even before I was a nonbinary autistic I was an AFAB who hadn’t worn make-up or a bra for over 20 years and was happy existing in socks and sandals without caring what others thought. I’ve been miles away from many societal “norms” for decades, and I have enough confidence not to worry about that most of the time. If people like me and want to be friends with me on my terms, great, if they don’t, then no big deal. Now I have a reason to explain just why I fail to comprehend society’s codes I feel even more justified in being myself and not worrying about it. I am fully “out” as autistic to anyone who cares to know (and probably people who don’t too) and absolutely happy with that (to be honest, anyone who knows anything about autism can figure it out in about a minute anyway if they meet me – I do present as stereotypically autistic in many ways and even if I try really hard to mask, at the moment I’ll last only about an hour before I start to collapse or get sick). Additionally, I can take the pressure off myself to be “strong” so in many ways it’s even better than before – I can ditch the self-blame, I can relax, I can just enjoy being me.

However, there is a flip side. I am still coming to terms with the fact that I am not the Strong Woman of my mask. My day to day existence is, for the most part, relatively low quality. Most days I spend between 14 and 24 hours on my own in a grubby, overcrowded, dark flat, trying to recover from the days and times when I CAN get out and do things. I look at my former colleagues from college days, many of whom have houses, children, and jobs, and I have none of those things. Certainly my inability to sustain employment is down to me being autistic (and, maybe even more so to remaining undiagnosed for 45 years – I never asked for adaptions at work because I didn’t know I needed them and I lost every career and job I ever had), and my consequent large debts and relatively poor living conditions are a result of that. I read memes that tell me if I want something I have to work for it. I have done nothing less than work as hard as I possibly can all my life and the things I wanted didn’t come – those memes sound like cruel lies to me. I spent a pleasant evening socialising and drinking with friends a couple of weeks ago – the resulting overload caused an entire night of meltdowns and panic attacks and suicidal thoughts. Everyone else went to bed and woke up with a slight hangover. Every so often I ask “Why me?” and then I feel guilty because I am betraying the neurodivergence movement and I become frightened of those autistics who tell me that autism is not a disability, just a difference, but I am so very disabled by it so very often – no work, no money, some days I am a 46-year-old who cannot even get myself a hot drink or work out how to get enough food to sustain me or even manage to get dressed properly. And not all of this is “society’s fault”, it is just the way that life is and is often a result of simple practicalities. I am actually surrounded by non-autistic people who are doing their absolute damndest to understand me and to help me and to compensate at every turn for my disabilities – they are brilliant and loving and patient and I am very very lucky with them, but I am still struggling. And at those times I wish I was “normal” (yes, yes, yes, I know the old cliché that there “is no normal” etc etc, which, to be honest, to those of us who are so far up one end of the bell curve that we cannot even see the middle of it, sounds a bit trite), at those times I wish I could go to work for a week (even part-time) and go down the pub for a few hours on Friday night and enjoy a weekend with the family, which I can’t. I wish my gender was one that was recognised and understood by everyone (that is society’s fault), but it isn’t. That is the sort of “normal” I wish for…

I could go on. There is still much to explore. There are two sides to this, the dark side, where I just want all this to go away and to live a regular life (and, yes, I use the word “regular” advisedly, as I do the word “normal”), and the wonderful quirky side where I can finally be me and enjoy it and live a life that is right for me. Practicalities constantly intrude on me “being myself” because I have to eat and drink to stay well, I have to find enough money to survive, and unless I never go anywhere or do anything ever again I have to interact with other human beings in a way that often makes me very uncomfortable. To an extent, there is a part of me that needs some interaction too – less than most people I suspect, but not none at all.

I suspect these thoughts will continue for some time. I am still new to all this, only just over a year since I discovered I was autistic. As far as being knowingly autistic is concerned I’m only just learning to walk, at age 46, after over 4 decades of trying to be something else and failing at it. I’m also still very burnt out and still trying to find help, still waiting for referrals to services, still trying to discover if there is any medication of any description that might help (I can’t take many of the things that might help because of co-occurring conditions). Perhaps things will improve as time goes on – it’s still really really early days for all this stuff.

It’s also a big switch, a total change in life parameters, and I suspect I’m still fucking things up quite a lot. Still not explaining myself right – remember, I’m also very alexithymic, which doesn’t help. I’m still working it all out. It’s all still evolving, much like this entire post evolved out of a simple feeling that I should add a short explanation about the previous blog post.

Strange times.

NOTE: Since I wrote the words above, I feel different again. At the time I intended to post Being Autistic, I was in such poor shape that I couldn’t even turn the computer on to press publish and I had to do it the next day. I’m actually in better shape again now, happier, more relaxed. That’s how quickly things keep shifting, how fast the oscillations sometimes are. But I won’t write yet another post about that at the moment because this cycle could go on for a very long time!

Advertisements

Typing The Words

Although the notion of me being autistic had been suggested by several people throughout the month of August 2016, and I’d started to research the idea seriously on the 23rd August, and then been to see my GP to get some sort of outside opinion on 16th September, by this time last year I hadn’t yet actually admitted to myself that this whole “autism hypothesis” thing was anything more than, well, a hypothesis!

I had, however, assembled a really tiny chat group on facebook, because I needed somewhere to be able to talk about what was going on, and the thought of declaring myself autistic on my main facebook wall (where most of my social life takes place) was WAY too much for me at that point. Furthermore, nobody outside of my immediate “every day” circle, or who hadn’t been there over the summer, knew what was going on. I was still getting used to the idea, and trying to explain to other people something that I barely understood myself would have been utterly impossible.

So, a few days after seeing the doctor, I set up the tiny chat group, and added just a very few people – really those who had happened to be in the right (or maybe wrong) place at the right (or wrong) time. Several were people who already knew what was going on, some had already helped me in some way, some had been through the same process, and some were folk who I simply knew I could count on because I’d been able to in the past.

The group became a sort of journal for me, although this time a year ago I didn’t know it was going to be that way. It was also, between September and December 2016, an absolute lifeline. I needed to talk about what was going on, and not just to my husband, and, thankfully, I found a way of doing so. There were around half a dozen people who endured hour after hour of me going on and on, and propped me up and kept me going through those times. I shall be forever grateful to them.

I hadn’t, at this stage, even discovered that there were autistic groups on facebook, neither had I found blogs by other autistic adults. That would come later, and even then I joined one or two groups and lurked silently, not even daring to comment, because somehow I felt like I wasn’t allowed – the groups were evidently full of “proper autistics”, real grown-up ones, not like me, who was just some random person who was a bit odd! They all seemed to know stuff I didn’t, so I silently read and learnt, because that was all I could do at that stage.

When I eventually did discover blogs, the best I could do was to follow their facebook pages if they had one. I didn’t, at that time, have a blog account that I could use, because I hadn’t set this one up yet, and, again, like the facebook groups, I wouldn’t have dared to comment. I’m still struggling a bit with the interaction element of blog commenting and even responding to comments on this blog – I need to have a very high energy day to be able to respond to comments (which, I assure those of you who have made them, I have read and will respond to) in the ways that I’d like as it takes many more spoons than simply writing a post and putting it up. This is my equivalent of presenting a paper, which I can do relatively easily on about 50% of days, but taking questions afterwards I’m still finding challenging, as I mentioned in Responding and Communicating.

So, for the time being, it was my tiny group of trusted allies, some autistic, some not, and, of course, the ever growing pile of books – once I’d bought the first couple from Amazon, the Amazon “suggestions” did much of the rest of the work, and buying books from Amazon was something familiar and easy, so that was what I did!

And, it was one year ago today, in that tiny group, that I first typed the words quoted at the bottom of The Discovery, and, after just a few weeks of suggestion and investigation, started to identify as autistic. It’s almost as though today is the first anniversary of me disclosing to myself!

I actually accepted the idea rather easily, mainly because, once I started to discover what being autistic actually was, it became really obvious that I was it. Although only months earlier I’d still just had some vague notion that autism was mainly something to do with small boys who didn’t talk or brainy computer geeks who took things rather literally or some sort of special educational needs thing or savants (yes, I was as susceptible to absorbing the stereotypes as many other people are, and I certainly didn’t believe any of the above related to me in any way, and neither had I ever had reason to wonder), as soon as I started to investigate and learn the full reality, it was obvious that it applied to me.

Interestingly, looking back, what I didn’t know a year ago was just HOW MUCH autism applied to me. I had yet to discover things that my mother was eventually to remember about my early childhood – things that I would never have discovered had I not gone for an autism diagnosis. At the time there was still a long way to go with the process of discovery (and I suspect there still is – I’m still getting moments where I suddenly realise something I’ve always done is not just “me” but is an autistic trait).

And although it felt weird because it was new, I had no problem with the idea of the identity “autistic”. I pick up from various places online that there is, apparently, some sort of stigma attached to the word, but I didn’t feel anything bad about it. I suspect that’s partly because of where I live and the people I come into contact with (there are very few of them and many are also neurodivergent or allies), partly because I had already had two decades with several mental illness labels so “autistic”, although new, and different, was, to me, just another thing to add to the list, and partly because I’d been used to being different from other people for so long, that actually it seemed pretty cool to have a name for the sort of different that I was! Furthermore, discovering that I wasn’t naughty and lazy, as had previously been thought, was such a relief that I embraced “autistic” with open arms!

And so, a year ago today, I typed the words that I’d realised, only a few weeks after the first suggestions, were absolutely correct. It did feel strange, unfamiliar, and new, in the same way that “I have bipolar disorder” had felt strange nearly a decade earlier, and “I have depression” had, a decade before that, but it also felt right, and still does. However, a year later I don’t have to type the words on a tiny chat group on facebook, and I don’t then need to then jump up and down going “fuuuuuuuuuuuuuuuck” to recover from the experience. I can type them on open facebook, on a public blog post, and I can even, now, relatively easily (as long as my words are working) just tell people.

That feels like quite a big change in the past year. And it had to be a gradual process, while my brain adapted to the new identity and I got used to the knowledge of what sort of brain I have. But the same words still apply, and these days they’ve lost almost all the “this feels a bit weird” stuff, and are now just a factual description of my neurology coupled with a big part of my identity.

I am autistic.

A Silly Tale

My Executive is not functioning
Their suit is creased,
They cannot find their papers
And their briefcase
Is full of ash.

The ash is from my burnout
And it spills all over the office
In great clouds,
Covering everything
In a fine dust
That will take some time
To clean up.

In the meantime
My constant hand flapping
Is spreading the ash still further
And it reflects the light
Coming in from the windows
And makes stimmy patterns
In the air.

When the ash settles on the desk
I like to run my fingers through it
And make circles in it
And then wash my hands
Because it feels a bit weird
On my skin.
Sand is nicer to play with.

My Words keep going AWOL
But they never leave a forwarding address
They just disappear.
I think they go off for a holiday
Sometimes.
Or perhaps they’re just down the pub
Enjoying a few pints
And a pie and chips.

Maybe that’s why my Diagnosis
Was so late.
It was sitting in the pub
For 45 years
Eating pies and drinking beer
And because it has such
Severe
Time agnosia
It didn’t realise that it had missed
The last train.

Although it finds trains
Rather stressful anyway.
And leaving the pub
Would have meant change,
Doing something different.
So maybe
It just gave in to
The inertia.

And, of course
Because everybody has such poor
Communication skills
Nobody was able to tell anybody
Where it was.

And night after night
My Executive got home
And ate the same takeaway for dinner
Every night.
Because even before the burnout
They couldn’t function very well
And needed their friend Routine
Who liked to have the same thing
Every night for dinner anyway.
And keeping Routine happy
Was always good.

Mask bullied my Executive
And tried to make them function properly
And told Routine to stop being so stupid.

Mask was an annoying tit.
Irritating and itchy,
No matter how many labels I cut out of it.
It looked good though
Everybody told me so.

But it got too warm.
Overheated.
It kept trying to keep the Words
At home
But they kept slipping out
The back door
And vanishing.

Then things started to melt
At the edges
Senses went a bit haywire
And there were explosions
And people started to notice.

My Executive stopped coming home some nights
And stayed at the office
To keep cool
And avoid the bullying.
Routine gave up eating
And sat in the corner
Rocking hard and hitting themself and tearing their skin.

And then when the Words got home
After a night on the town
They told me that my Diagnosis
Had been seen in the pub
And that closing time
Was fast approaching.
Last orders had been declared.

When my Executive
Returned from the office the next evening
They found Routine crying in the garden,
Clutching a fidget cube and a furry tangle.
My Words explained what had happened
By typing into an iThing.

Mask had got too hot.
Way too hot.
Melting down had increased
No time to cool.
Mask had cracked in the heat and would no longer stay on.

Sparks, flames, and total burnout.
Explosions so loud that ear defenders were needed.
Piles of smouldering ash everywhere,
Which my Executive tried to put into their briefcase,
Though they didn’t help with functioning
And eventually made a mess in the office.

But just as all seemed lost,
My Diagnosis finally got back from the pub
With an official Report
(And a kebab).

Mask should never have been worn for that long
Masks when worn for long periods
Can overheat
And are a burnout risk.
Safety procedures had not been followed.

Report said that
Routine needed care and love,
My Words should be allowed to come and go as they liked.
My Executive needed an assistant to function
(And would also have to sweep up the burnout ash,
Which could take a while).

Diagnosis explained that communication was hard
For everybody
And that Report had said so.

And everybody finally understood
What had been going on
And jumped up and down to celebrate.

Diagnosis was a bit drunk by now
So they went on the Internet
And ordered loads of spinners and toys and pretty lights
And everybody settled down
Under their weighted blankets
To recover from the events.

And they ate kebabs every night for months.
Because they always ate kebabs.
Because Routine liked them.

Works In Progress

I’m aware that blog posts have been a little erratic of late, and it might seem that I’m doing less writing or losing interest. In fact, that’s not the case at all, and what’s actually happening at the moment is that I’m trying to work on a couple of projects, both of which will probably extend to multiple blog posts, and both of which I really want to get right and be as accurate and clear as possible, since both are important for different reasons.

One is the story of my final autism assessment, the one where I received my diagnosis. I’ve started work on this, but remembering back and trying to write exactly what I want about it is taking quite a lot of energy and is quite hard work, so it’s not happening overnight. It’s more of an “end of term assignment” than “this week’s homework”. It might take another week or so for me to complete this project.

The other is a write up of what happened on Tuesday of this week when I attended the National Autistic Society’s conference on Autism and Mental Health. I’m trying to write up the experience and what I learnt (I took 11 pages of notes), and my thoughts on the day as a whole. There are many of these thoughts and sorting them all out into presentable form will take a while. I’m currently working on them as fast as I can.

Furthermore, as is obvious from the preceding paragraph, I’ve actually been out in the world again doing things quite a lot recently. I’ve been to the conference, met up with a new friend, played quite a lot of music, and am also meeting up with old friends over the coming weekend. Furthermore, I’m starting to organize my life and plan for the future a bit too and have started thinking about goals and plans for the next few years in a way that I haven’t done for a very long time. Most of these things are taking a massive amount of social, sensory, and executive functioning energy and I’m needing to undertake a certain amount of self care (downtime in between, remembering to eat, etc) in order to cope with my increased activity levels while still continuing to recover from burnout. It’s a tricky balance to achieve.

So I’m still here, still working on these things, and still trying to do a good job of giving information and my viewpoint and doing so as clearly as possible. I’m still also working on tidying up this blog and making a complete list of posts and so on, but all this will take a little time, even though I’m very very determined. I’m doing, as I always do, my absolute best with it all.

But I’m only one human with a rather erratic mind, and I’m acutely aware that I need to protect my mental health so I don’t relapse, so it might take a few days for me to catch up on everything I’d like to say.

I’ll get there!

Low Confidence

Today is one of those low confidence days.

One of the days where I’m not sure if I’m getting it right, or wrong.

When I keep opening blank boxes on Facebook and Twitter and closing them again.

Where I can’t quite make my thoughts into words properly.

And I’m really uncertain that people will understand what I mean.

Because I am full of big feelings that I can’t translate.

When I look at the jobs list it seems long and complex and insurmountable.

I’m still trying to work out this new identity. Still trying to explain.

Still trying to write the posts I really want to for this blog.

My head is screaming at me that I need to do EVERYTHING. NOW!

Surely with enough willpower all is possible?

Wanting to be strong. Wanting to be efficient.

Wanting to sort my life out and achieve and succeed.

But the inertia is high and the functioning is low today.

I am still recovering after a busy time and a shutdown.

I am still having to remind myself that I am autistic and my mind needs a more forgiving approach than I have previously given it.

Now that my act is gone. Now that I’m working out who I really am.

These days I do not have the protection of a mask, nor the ability to recreate one.

Remembering what I have been through these past few months.

It’s perhaps inevitable that I struggle a bit.

I need to take things gently.

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.

Maybe a Poem…

I was never
A poet.

Aside from:

School creations

And a few rhyming ditties,
Lost
When an old blog server
Closed
And an old computer
Ceased
To function.

Yet,
Since last year,
Since I discovered
I was autistic
And everything
Changed…

Sometimes
Brief
And structured
Words
Have become
The way
That thoughts
Emerge
From my mind.

They are sometimes
More accessible
Than
Crafted prose.
When the machinery
In my head
Is operating
A slow
Translation service…

From
Thoughts…
To
Words.

I don’t even know
If they are poems
Or not.

They are what they are.

And they say what they need
To say.

Apparently
It is World Poetry Day
Today.

And for the first time
I wrote something
That might,
Or might not,
Be a poem.