Covid, 2020 and Autism: Where is my mind?

Where is my mind…?

I’ve been repeatedly playing the song by this name by The Pixies, just as a reminder to ask it the question of myself. This year my Autistic brain has found itself circling losing itself over and over; and it’s been little to do with Covid-19.

I usually hate falling into clichés but this year has been the proverbial rollercoaster for me personally.

I don’t usually adhere to a year being anything more than an arbitrary measured period of time, but if you’re going to apply meaning to that period of time, as years go, 2020 has been a doozy.

Even without the impact of Covid-19, there have been enough negative things which have occurred this year for both myself and those i support, to last ten lifetimes.

Those things alongside and addition to the everyday wear and tear of life as an Autistic person, navigating a world of barriers and marginalisation and the everyday wear and tear of life as an Autistic parent of three Autistic children, balancing them as the most important things in my life along with them being the biggest sensory triggers in my life and all the challenges these things bring…

Almost losing my Mum, as her dementia ramped up in the early days of Covid-Lockdown, going from someone relatively self sufficient to having to watch her starve herself to imminent death via WhatsApp video calls because I live at the opposite end of the country; fighting for social care support for her and then the headfuck messed-up-ness of her recovering, only because my sisters moved in with her to give her 24/7 support; before she was well enough to move into a Care Home in the middle of a pandemic running rampage through Care Homes.

Where she now lives and despises, trying to escape every day; and I haven’t been able to or allowed to see her in person in over a year.

Supporting my wife with a deteriorating chronic disability, watching her struggle in pain and exhaustion every minute of every day while Doctors twiddle their thumbs and pass the buck on her care.

De-registering my Daughter from the education system in order that it doesn’t end up damaging her more than she’s been damaged already.

Losing a piece of work that would have meant more pay in one go, than i’ve earned in twenty years. Which would have finally yanked us up financially to breaking even.

Amongst all this, the worry of Covid-19, of seeing the patterns of behaviour long in advance that led to being proved right over and over about the inadequacies of Politicians when measuring between their ability to do what’s right and their ability to self-serve, of worries for the safety of my family and friends, not from a virus, but from ineptitude.

Ironically, like so many Autistic people the opportunity to stay away from people, to reduce social demand, to exist in a bubble of controllable safeness, which should have been a positive amongst the negative – was lost on me, because of all the other time and brain consuming events in my life

This sounds like a woe-fest, a what-about-me-fest, but it isn’t that at all. I’m just framing what follows.

Throughout my life, reflectively, I know that as actual demands on me grow, often the demands i perceive become more difficult to deal with and something has to give.

My Monotropic brain can only focus on those things I need to prioritise on, those things that spark my interest. Unfortunate, when dealing with multiple stressful things at once, my ability to focus on interests diminishes to a few things. My broader interests are the things that have to give.

Previously the thing that had to give was me. I pushed on and pushed on until my mind went and I lost myself in Autistic Burnout.

I know better now; and as demands have grown on me that have been out of my control, I’ve made the conscious decision to allow my self-preservation to kick – to not fight on all fronts until I dropped.

I have allowed myself to be demand avoidant.

I’ve let my flow take over and withdrawn from those things I can’t control.

Inevitably that’s had an impact on all areas of my life, even those things i’ve made a semblence of maintaining. My work is my biggest passion and while, yes, it has been affected massively by Covid, it’s been further impacted by my inability to answer emails, or messages because the demand of them is enough to send me into overload. I’ve had to let them build until my reserves were built up enough to respond.

But I’ve been honest with people, I’ve told them that. I’ve made it clear I’m not ignoring them, I just haven’t got the capacity to deal with whatever it is they want to talk to me about.

This has also been reflected by my lack of real activity on my Social Media pages and the real lack of writing on my website, where you are reading this.

This has also meant me pulling back with engaging with the people who are important to me scattered across the world; and from the spaces I love and have helped create, which are doing so much good for Autistic people in various ways. All things I love and all things which have had to be paused in order to protect myself.

Don’t get me wrong, constantly navigating and balancing on the precipice of Autistic Burnout and consciously warding off poor mental health has been challenging and exhausting and not completely successful – there have been times i’ve succumbed and ironically have had to work harder at pulling myself back. There have been times I may have thought it easier to fall into Burnout than stave it off for the umpteenth time.

I’ve been non-speaking so often, saving my words and my voice for times I’ve really needed it. Ironic for those who’ve heard me deliver on multiple occasions this year I’m sure – the parts of me they’d never see, in complete contrast to the parts of me they see all the time. A metaphor for the obscene pointlessness of functioning labels.

Bet you haven’t noticed me sitting up till 3 in the morning processing and processing and processing, then snapping myself awake at 6am as my children rise and shine.

But I’ve reached the end of this arbitrarily measured period of time with a feeling of some success – which is a little alien to me.

Because this year has taught me the hard way that despite the negative and oppressive things that exist, out of each negative thing comes positive lessons and positive outcomes;

I’m very much a pessimist and this has been suprising to me because…

I feel good. I feel light somehow.

Despite the awfulness that perpetuates, despite the exhaustion I feel, I’m recognising the good that has happened this year, which will snowball, I’m sure, into bigger and better things.

If i’m going to look on 2021 not as an abritary measure of time, but a period to which meaning can be applied, then i want that meaning to have purposeful and sustainable value. I can’t control external forces, but i can to a degree control me and what i do in the face of those forces.

There will be spillage into next year of the issues I face personally and those issues that collectively, we’ve all faced, (Covid isn’t going anywhere, people are still dying and that will continue, our lives will continue to be negatively impacted for a long time) and after all, the measurement we make of time is just abitrary is ignored by events. But right now. right now. I don’t care. I’m going to exist in this moment and this feeling for as long as i possibly can.

I’m Alexithymic, I struggle to identify my emotions and right now that I can identify this… Whatever it is… This lightness… Contentment maybe… Then I’m going to roll with it.

And with it I endeavour to be thankful for the things i have which give me strength.

Thankful to the people who, (and some of you will be reading this) even unbeknownst to them, have been life vests that have prevented me from drowning. Who with words, or actions, often not even directed at me, have aided me to rally and regroup.

I thank and am thankful for not only my friends and family, but the community i have around me both online and in-person, that have kept me afloat.

That every time I have asked myself the question ‘Where is my mind?’ I’ve been able to ground myself by those around me, physically and metaphorically (the people who live in my phone and computer, as i sometimes see people refer to – which tickles me); and I’ve been able to answer to myself: it’s right here, dealing with this problem or that, or shutting down for a few minutes respite.

So thank you.

Thank you to those who patiently follow my social media. Who have grown accustomed to my overly worded posts, my Tweets railing at the injustice of the world.

You may not have seen me much, but please know that even if you don’t see me posting or writing, that doesn’t mean that I am doing nothing, or doing things solely for me. Because despite all of the above I have continued working.

This is not an apology for not being public and present enough, but a marker in the sand to say that, as an Autistic person, I struggle.

As a human being I struggle.

And all i want is for there to be less of that, not even really for me, but for those who’ve given me the privilege of having a platform.

People keep telling me i should be sharing my wins, but it goes against the grain for me to do so. I find it difficult enough to promote my own training.

So my wins of this year, are mine. I’m keeping those for me.

I hope you’ll feel the benefit of them, even if you don’t know what they are, or that I’ve played a part in that benefit.

This has never been about me and I don’t ever want it to be.

This year has been shit in many ways, but it’s also been good and also been ok, nothing is totally one thing or another.

2021 is looming right now. That abitrary measure of time. I’m going to give that the meaning I need it to have and take what I want from it.

My passions are igniting and I can sense change in the air once more.

I’ve simplified my goals and reduced them down so that I can achieve them and not lose sight of them in the midst of the overwhelming times still to come.

Like I said, I feel lighter, stronger and, for the first time in a long time i can answer the question of ‘Where is my mind?’

It’s right here and it’s focusing.

Blurred outlines are getting sharper and if my head would collapse, there’d be plenty in it.

No matter what happens in this revolution around the Sun, there will be better days and we’ll find them by clinging onto what’s good for us.

So onward.