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!

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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?

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.

Limitations

Advice often seems
To tell me
To consider
“The positives”
And to focus on
What I
CAN
Do.

If I’m honest
This strategy
Isn’t always
Terribly helpful.

I’m perfectly well aware
Of my strengths
And achievements.
They’ve been pointed out to me
Many times
Over the years
(Because people seem to like
This sort of
“Feel good”
Stuff,
I think).

I don’t need this information
Again and again.
I already have it.

What I am finding
MUCH
MORE
HELPFUL

MUCH
MORE
HELPFUL

(Twice,
And capitals,
For emphasis)

Is to learn
What my
LIMITATIONS
Are.

I have been told
All my life
About working hard
And succeeding.

But the things
That I
CAN’T do
Have rarely been
Considered

Or have been ignored
Or have been thought
To be the result
Of me being lazy
Or wilful.

So,

I have continued
To blame myself
For my failures.

I have struggled
To learn strategies
To compensate
For my difficulties

I have never learnt
How to ask
Other people
To help me.

(Because I have always been told
To focus on my abilities
And strengths
And how strong
I am).

If I’m honest (again)
Then allowing myself
To admit
What I CAN’T do
Is a sweet blessed relief.

To learn that I am disabled
Means that I’m not bad and lazy.
It’s Not. My. Fault.

To focus on my struggles
Means I can start
To work out
How to cope.

To drop the “strong” act
Means that I have permission
To ask for help.

(And it’s even OK
To admit
That there are things
I will give up
Even TRYING to do
Because they use
Too much energy
For me).

It is relief.
Really really big
Relief.

After 4 decades
Of trying
To live up
To the high expectations
That so many people
Have had.

Can I stop now?
Please?

Can I give up the quest
To be impressive,
High-achieving,
Sparkling,
Witty,
Attractive?

And just be me.

Not impressive.
Not special.

Just me.

And allow myself
To consider not my strengths
(Because I’ve done that
For too long
Because that’s what people
Have told me to do)
But the things I cannot do
The things I need support to do
The things I find difficult
And the problems I have.

Because I need to do that.
I need to learn
I need to discover
What I CAN’T do,
What I’ve been faking
All these years,
And where I have been
Pretending
To be capable
And where that pretending
Has damaged me.

I need this time.
I need this space.
I need to be allowed
To be weak
And to learn
How that is
For the first time in my life.

Because that is new to me

It was never part of my mask

Or my plan

Or any plan anybody else
Had for me.

I was never taught
How to give up
Or to let go
Or to rest
Or to relax

Or to accept
That there are things
I cannot do

And that it’s OK
To stop trying
To be strong.

I believe
That only
Once I have examined
My weaknesses,
Accepted them,
And worked out
What to do about them,

Will I know
What my true strengths
Really are.

Dark Thoughts

This post should, I think, be one that carries additional content warnings beyond those on the home page of this blog. As you might guess from the title, material that some might find triggering or distressing might well be included here, so please protect yourself if you’re vulnerable and only proceed if you feel able to cope or have safety strategies in place. I should also add that I’m not in any immediate danger, despite having regular thoughts about my own place on this planet, and I have my own strategies sorted for the time being.

I find myself in a slightly odd situation when writing about and publishing posts about the darker side of my mind. When I started this blog one of the things I wanted to do was to be as honest as possible about as much as I could as possible, partly because that is just the way I am, partly because one of my hopes is that by discussing the more difficult topics (such as suicidal ideation) I will, in some tiny way, contribute to destigmatising them, and partly because there might be others who, like me, will read that there is someone else out there experiencing these thoughts and feeling and will feel comforted by the knowledge that they are not alone (even though this usually raises the rather odd situation of “I’m glad it’s not just me,” hastily followed by “I don’t mean that I’m really glad you feel horrible and want to end your life, just that I’m reassured that I’m not alone”).

However, when I am at my worst, one of the things I struggle to do is write about it. And, even if I do manage to type any words (usually into my phone while curled up under a blanket), the chances of my having enough functionality actually to publish them on this blog are pretty much nil. So I’m always playing a sort of “catch up” with the dark thoughts!

I’ve had a pretty rough week this week. Regular readers of this blog will know that I was away from home and spent a LOT of time surrounded by people during the preceding week. I didn’t know whether I’d even manage to be there, and it was only because of quite a lot of people giving me quite a lot of support that I was able to manage at all. However, even WITH that huge level of support and acceptance, it took every ounce of energy I possessed just to cope with an absolute minimum level of activity, so this week I have, unsurprisingly, been utterly wrecked.

I’ve done a lot of thinking about the amount of effort put in, both by me and by others, and have been considering hard whether it’s worth pursuing some of the more difficult things that I keep trying to pursue. I’m clearly disabled enough that I need care and adaptions just to enable me to participate in many things. I haven’t yet managed to process all my thoughts about this, and certainly if you’d asked me on Monday, I’d have declared that I was never leaving the flat again, ever, and that there really was no point continuing with life. I managed to post a couple of blog posts in the better moments, but that was about it.

However, time and solitude have meant that (I think) the worst is now over, and I’m gently starting to resume life, and to start to think more sensibly about my future exploits in the outside world. But, looking back to Monday, I thought it was important at this stage to acknowledge that this process of autistic discovery is not all wonderful relief. The wonderful moments such as those described in The Magic Spot and Liberation! are part of the experience, yes, but there is also a bleaker side of an autistic discovery, particularly, perhaps, for those of us who have a lot of anger and sadness at the way our lives have turned out. I could, if I wanted, make this blog all about the wonderful bits, a great celebration of beautiful stimming and hand-flappingly joyous discoveries and solved mysteries and so on, but it would feel like lying, so I won’t.

The darkness of this week has in no way been comparable to that described in The Aftermath, although I have, once more, had to work seriously hard to persuade myself that it is worth staying alive for the time being. It’s all very well accepting myself as an “out and proud” autistic at home, but once I have to interact with people in the outside world I have to work out exactly how I do that – there’s a blog post fermenting in my head about it – and that causes me to ask a LOT of questions about my value to the world and my purpose in the world and so on. The immediate answers delivered by my head are not all that encouraging, and I have to do a lot of work to debate them.

And, it seems, I am not alone. This morning somebody shared an article on facebook. I haven’t checked its veracity so I am merely reporting something shared by a mainstream media outlet (I don’t have the spoons to go back to the primary source right now), but the report talked of “investigating concerns about suicide rates among autistic people” and “research shows that two thirds of adults newly diagnosed with the condition had contemplated suicide.” If this is the case, then I’m certainly part of that two thirds.

Research results such as these are no surprise to me. In fact, from my own personal experience, I’m amazed it’s not higher. I have been contemplating suicide for as long as I’ve known what suicide was. I sort of assumed that most people did, but that, like me, they just didn’t talk about it. My feelings were borne out last autumn when I read Philip Wylie’s Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) in which he described a further suicide attempt after his own diagnosis at 51.

Having such thoughts and memories does, for me, prompt me to review my “progress” as far as my own process of discovery and diagnosis is concerned. After so long in the mental health system I’m also very attuned to mood monitoring, and I’m also continually trying to assess my state of recovery from burnout in order to try to work out what level of functionality I might eventually hope to achieve and what kind of goals and plans I might make for the future (probably my strongest motivators to keep living are to achieve goals, to learn “things”, and to “find out what happens next”)!

I wrote the words below back in February, three days before I received my diagnosis. At the time I considered them too dark to post, and, since I was diagnosed just days later, and then life changed again a few days after that, they were never published. I feel there’s sufficient distance to publish them now, and I’m very aware that there are others still going through the diagnostic procedure who might relate to some of them. Also, however dark life has been this week (and it has been quite dark), it hasn’t reached the stage it was at back then.

If they don’t diagnose me
I can’t see the point of going on living.

Because I hate my life so fucking much.

I have always hated life.
I don’t know why people care about it so much.

I do not belong in this vile place.

But I was told to behave.
I was told to smile.
I was told to work hard and be good.

So I did.

But everything still turned to shit.

And I smiled publicly through the shit.

And unlike the kids who got spotted and got shrinks and stuff
I used those fucking accursed bastard brains to compensate.
And destroyed my mental health in the process.
The smiles hiding a ticking time bomb
Of mental illness and desire to be dead.

They thought I was happy because I passed exams.
But the exams were the retreat from the misery of people.

And later I drank myself oblivious when alone.
And cried.
And tried to end this hell.

And still nobody has believed me

45 years.

Still fighting.
Still not knowing who I am.
Still being told that maybe I have brain injury.

Why why why.

How much fucking longer?

I’ve written quite a lot more dark words about dark thoughts this week too, more about how angry and frustrated I am at my inability to function in the world, about how long all this took to discover, and about how much I struggle with some aspects of life. I’ve also had cause over the last week or to consider the vast gulf between some of my abilities and some of my disabilities, and how that gulf makes life so very complicated and unpredictable. I’m still working on trying to formulate those thoughts into something coherent though, so I’ll stop for now as this post is already quite long enough and my writing ability is almost exhausted for now – I can feel the sentence structure is no longer flowing and easy and that I’m having to use large amounts of brain power to translate my thoughts into readable words, so it’s time to stop!

Summer School

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.