I wasn’t going to post today. It’s been a slow day, a very slow day, and it has taken until 5 in the afternoon for the fog to clear from my head sufficiently for me to form proper sentences.
I’m also aware that I’m in quite a negative place at the moment. The lack of validation at the truncated assessment two weeks ago is still hitting me hard. I’m still struggling with the huge dissonance caused by uneven recognition of my autism. I have spent almost 20 years in the mental health system in one way or another, seen numerous doctors, counsellors, psychologists, psychiatrists, community psychiatric nurses, cognitive behavioural therapists, mindfulness teachers, and volunteer and charity mental health workers. In two decades, NOT ONE of these people has even mentioned autism to me. Not a single one.
The recognition that I am autistic is the single most important thing that I need in order to start to repair the damage done by 4 decades of masking, the thing that, had it happened years ago, could have helped me live a happier and better life. But in all those years, nobody said anything at all. I was sent for CBT to enable me to go to supermarkets and do shopping – it taught me immense willpower and fortitude, it taught me that it was normal to feel sick and exhausted. So I ploughed on through life and that was my normal. I smiled and assumed everybody felt the same. Until the point when I could no longer manage and my body gave up on me and I ended up ill and collapsed.
And two weeks ago, having even told the assessor that I’d spent my whole life asking for help the best way I could and being told I was so intelligent I’d be able to cope, the same thing happened again – I was told that my levels of articulacy (when asked a question to which I have a well-scripted and oft-rehearsed answer) were inconsistent with an autism diagnosis and the assessment was stopped after less than an hour and I was told that I’d have to return in January to see someone else as I was “so complicated.” I’m still trying to write it up fully, but it is immensely triggering and difficult.
Then I went ahead with starting this blog and full disclosure. The decision to disclose was an easy one – not because it was an easy thing to do (outing myself about something of such massive proportions without official say so was way beyond my confidence level that I would even be believed) but because I couldn’t figure a way that life would be worth continuing with if I didn’t disclose. In the perpetual debate as to whether to choose a rock or a hard place, the decision is made somewhat easier if the rock is freshly erupted from a volcano and is still on fire!
And so I disclosed. And received a whole host of positive responses – Of course you’re autistic. You didn’t know? Yes, it’s absolutely obvious. Me too and I knew instantly you were. I assumed you’d been diagnosed years ago… and so on and so on and so on. Some of these people have known me in person for decades, some I’ve not met but they picked it up simply from online behaviour, some hadn’t thought of it but the minute I said it they said how much sense it made and how obvious it is.
So what’s the deal? Every book I’ve ever read, every quiz I’ve ever done, every list of traits, people who know me (who I honestly expected to say “Really?” and be as shocked and surprised as I was) all scream autism at the top of their voices.
Yet the medics seem to have some sort of blind spot?
This single thing that could dramatically improve the lives and health of so many people like me is being ignored. My head is wrestling with this in a big way. I simply don’t understand. What is the matter with these people?
After a calm early evening yesterday I became very angry about it late last night. As a consequence I spent most of this morning in a state of shutdown. I was still in a fairly bad state when I finally managed to drag myself out of bed shortly after midday.
I absolutely believe that when the turmoil is settled down discovering I am autistic will be a massively positive thing and I’m very keen to embrace the positive bits and find out what my strengths actually are (the things I can really do, not the things that I’ve trained to do but are counter to my natural aptitude and achieved through immensely hard work) and how I can make a better life. Since I always was autistic and always will be, I might as well make the best of it and learn how to look after myself properly, using appropriate strategies to compensate for my impairments while positively embracing any strengths I might have.
However, I also want to tell the truth. Getting up and trying to achieve something today was tough. And I share the words below partly because they are the truth, but also because someone else might need to read them sometime and know that they’re not alone. Positivity has a great place in the world. But sometimes it is more comforting to know that somebody else understands.
My head isn’t working right.
Everything is irritating me.
Not at ease with the world.
The thought of doing anything, impossible.
Annoyances from the last few days racing round my head.
Anger and frustration.
My legs and feet tense, moving back and forth.
Picking my skin. Chewing my fingers.
Almost paralysed on the sofa.
My brain knows there are things to do.
I cannot reach them.
There is me, and there is everything else.
Noises surround me.
I am anxious and edgy.
Speech great effort.
I need to meltdown.
To press the reset button.
But it can’t be made any more than stopped.
And I am stuck.
Searching my mind for a way to feel better.
I shuffle to the fridge.
Get a “breakfast drink”
And sip the cold liquid through a straw,
Rocking on the sofa
While the weatherman on the telly
Gives the early afternoon forecast.
Movement isn’t working.
So try compression.
I wrap myself tightly in neoprene supports.
And the pressure begins to work.
And I start to calm.
It is three in the afternoon.
I am almost ready to start the day.