Reactivation

This blog,
Inactive for the longest time
Since it began.
Months and months
Without a post.
Comments unmoderated
And unanswered.

Apologies.
I will get to them
When I can.

So why now?
Why am I attempting a return?

The reason odd.
Makes me uneasy.
Because I am “joining in”
With something.
Or,
At least,
I’m going to
Attempt
To join in
With something.

I have generally,
Throughout my life,
Spent more time
On the edge of communities,
Observing,
Rather than actively participating.

Even when
I’ve thrown myself wholeheartedly
Into a community of any sort
I’ve usually withdrawn
To the edge
Or even departed completely
Pretty quickly.

Likewise with the autistic community,
I maintain a position
On the edge.
Observing.
Learning.

I do not know whether this is because
I find the whole notion
Of any “community”
So very very alien
To my way of being.

Or because
Everything is still so new
And I am so very very
Underqualified
To contribute.
A beginner,
Observing those
With way more confidence
Than I possess.

Maybe.

I don’t yet know
If I will have anything worthwhile
To contribute
Or what my energy levels
Will permit me to do.

To what extent can I “join” any project
As me?
To what extent will I have to mask
My true self
To participate?

The subject matter chosen by others,
The timings chosen by others
(If I even manage to stick to them)!

(Although I don’t discount
The possibility of posts
On other subjects too)!

But,
I feel it is time to try,
Time to return,
Tentatively,
To this blog.

My life
Still very much under review
As I try to figure out
What to do with
However many years
Comprise my future.

And how to live those years
As best I can
As an authentic autistic me.

How to survive in the world
And meet basic needs,
How to build some sort of life
That provides sufficient satisfaction
And is worth the effort,

And how to do this while
Spending as little energy as possible
Pretending,
Acting,
Masking.

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Sheet Problems

Many of our sheets are
Still missing after the move
Many are old
And wearing out…

So I bought a new one.

I washed it
As I do with all new things
Because new things
Never feel right
Or smell right
Unless they have been
Washed in the usual stuff

(My mother once washed
My bedding
In a different sort
Of powder
When I was a child
And I couldn’t sleep
Because it smelled
So wrong).

I put the new sheet
Onto our bed
Yesterday.
I knew it was wrong
The instant I got into bed…

Scratch scratch scratch.

Scratch scratch scratch.

Scratch scratch scratch.

I feel now
As though I have spent the night
Sleeping on sandpaper.
I feel as though my skin
Must be red raw
From the experience.

I know it isn’t,
Logically.
And, as always,
Any outside observer
Would simply tell me
They couldn’t see anything
And not understand
The problem.

(My spouse has had
Years of me complaining
About wrinkles
In the sheets
And things not feeling
“Right”
While he is unable
To feel what is wrong).

So I am about to get up
Much earlier than usual
Because I cannot lie
On this sandpaper bed
Any longer.

And I will be changing the sheet
Again.
More energy used.
More washing.
Another failed thing
To add to the detritus
In our flat
Another waste of money
I don’t have.
Something else
I will struggle to throw away
Because I will feel sorry for it
And guilty that I didn’t love it.

Maybe the animals will enjoy it as bedding?

But, as my spouse said to me
At least we now know
There’s a reason that I
Complain about the sheets.

So that’s something.

But I still need a new sheet.

Which means shopping
In shops
Which is hard.
And the sheets are all in packets
So I can’t feel them first.

Or buying online
Where I also have to guess
Whether the sheet
Will be a good one.

(And, of course,
The good ones are more likely
To be the expensive ones
Which I can’t afford).

You’d think
That buying a new sheet
Would be something
Quite simple to do.

Not in my world it isn’t!

Being Autistic

Right now
Being autistic
Is giving me
Warm, fuzzy, lovely
Feelings.

It is so obvious
That it is who I am,
My identity,
My way of being.

Feels so right.
Lovely.
Like a big hug
Rocking
Happy
Autistic.

Loving that
I do not have to be
Part of society
In the usual way.
Happy inside my head
Just waggling my fingers
So lovely.
Nothing else matters.
For hours.

Smile smile smile.

One of my huge
Autistic traits
Is that my
Social imagination
Is very very poor.
(It scored me
Very high
On the ADOS).

That means
I cannot imagine
What it is like
For things to be different
From how they are
Right now.

I struggle to imagine
What it is like
To be someone else
(And, for the record,
I AM also an autistic
Without much
Natural empathy.
The empathy I have
I work hard
To achieve
Because I like the people
But I have to learn
And really work at it
(Unlike my spouse,
Who is a hyperempath)).

Anyway, I digress.

So, right now,
I struggle to imagine
What it is like
To be that other person,
That person who
Doesn’t want
To exist any more.

I remember that
There is a version of me
That wants to die
That finds life
Unbelievably hard
That constantly asks
“Why me?”
That hates the life
I am forced to lead.

A version of me
Who wishes I was
“Normal”
And could just chat
Could just be out in the world
Without sensory overload
Could just get up
And make a cup of tea
And go to work
Like so many
People can.

A version of me
Who is struggling
To come to terms
With being autistic
Because of the way
It limits my life.
And who is frustrated
Because they are unable to live
The life they had expected to.

A version who
Wishes they were
Less disabled.
And also wishes they
Fitted neatly
Into the gender binary
And didn’t
Cry and feel bad
At gendered toilets.

That version of me,
However,
Seems to be
Miles away
Right now.

That person has written things
I can hardly understand.
But that I will work hard
To process
Intellectually,
Academically,
And will publish here
From time to time.

But right now
The person who is here
Is content
To be
An autistic enby.
With a new identity,
A new name, even.

It’s all good.
Because it fits.
And it’s right.
And it’s me.

And at times like these
“Autistic”
Is the sweetest word
In the whole language.

Why did it take me
So long
To discover
How perfect
It is
For me?

On The Sofa

Legs rocking,
Foot hitting the sofa back
Over and over again.
As usual.

Moving my wine
From hand to hand
So I can flap each hand
Even numbers of times.
Ah. Flapping. Happy.

Flicking my fingers
And waggling them
Fast.
Flick flick flick.

Occasional noises.
Just sounds.
Tonight a
“Nya”
Sound.
For no reason.

Wrinkling my nose
Which is my newest stim
Only a week old.
I don’t know where it came from
But it is.
So I go with it.
Wrinkle. Wrinkle.
Feels good.

Twisting my hair.
Allowed.
Picking my scalp
No no no!
Trying to let it heal enough
To dye my hair.

I rub my face instead.
Distraction.

Rock, hit, flap
Flick, waggle, sound
Wrinkle, twist, rub.

Just a normal evening.

Stimming.

Variability

Today has been an OK day.
Not amazing,
Nothing much achieved,
Just clothes
And a bit of lunch,
But fine, OK
Perfectly contented
Just to be.

Yesterday was miserable.
I didn’t want
To exist
At all.
Really depressed,
Really low.
Not seeing any value
To my life
Nor any point
In staying alive.
Desolate.
Hopeless.

The day before was nice
I visited my best friend
Had coffee with my husband
Bit of shopping
Good stuff
Nice dinner.
Contented
Fine.

The day before was impressive
Coffee and breakfast
First thing
Cheese and mushroom toastie.
Two lots of shopping
Trousers, washing powder,
Bath foam, food.
All good stuff.
And then a 12K run.
Successful, good day.
If all days were like that
Life would be worth it
Totally.

The day before that
Tried to make tea
Couldn’t.
Drove to town, parked.
After three different coffee shops,
All too busy, frightening,
No words, even to ask for
A latte, which is what I always have.
No hope of buying food.
Returning home
In tears.
Fighting the urge
To damage myself.
Not able to eat.
Seeing no hope.
I’m a jobless, childless, useless
Person in their 40s
Who cannot even
Get a hot drink for myself.

This is the variability of my life.
This is the difference in capability
From day to day.

And I never know
How the new day will be.

And I struggle desperately
To imagine how life
Could be any different
From how it is
In that moment.

When it is good
I make plans
Based on the good persisting
And I imagine
Things will improve
Consistently
And I can achieve
So much.

When it is bad
I see no way
It is worth staying alive
And I have to fight the urge
To give up.
Sometimes
Taking it
One hour, minute, second,
At a time.

This is the variability
Of my life.

(And is also why
This blog
Is so unpredictable.)

Still Here

It’s OK
I keep telling myself.
People take holidays from things
All the time.
Maybe I haven’t failed
At this blog…

…I’ve just had a break.

There is so much still to say
And I need to respond,
STILL,
To messages and comments and so on.

But this last week or so
I have been a bit broken.
The price I pay
For doing things
That sap my energy
And require me
To be out in the world.

And there have been other stressors
Recently
I tried to list them yesterday
But couldn’t.
However,
I might manage today:

Washing machines
Our living situation
Bills and so on
More forms (triggering)
Childhood, children
Gender identity
Invalidation
Suicide awareness
And ideation
Further anniversaries
My biggest breakdown
(16 years ago today)
Starting to examine my childhood
(1 year ago today).

I have been low
And
I have been expecting too much.
Pushing too hard.

Accepting the limitations
On my life
Is not easy.

But I risk my recovery from burnout
If I don’t take things gently.
I have to keep reminding myself
That I am disabled
And that’s OK.

And it’s OK to take things gently.
And nobody will tell me off
If I don’t blog for nearly a fortnight.

I am still here
I still have many posts to write
But life has been a bit of a struggle recently
So I’ve been a bit absent.

But I’m still here.

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.