January 23, 2018 § 20 Comments
Photograph by Stu Allsopp 2018
Don’t bother reading this. Yes – probably this blog post has been written before. Possibly even by me? I’ve written so very many posts since my diagnosis that even I can’t keep up!
Deja vu, reinventing the wheel, this is what comes to mind when I hit the web these days. Voices that have been silenced for a lifetime are compelled to speak, and in so many ways blogging is the perfect mouthpiece.
But I’ve become weary about sharing my life online.
Suddenly – as I approach my two year diagnosis anniversary – the plane is tanking. I’m not giving up on activism. There’s probably just a limit to how long a person can keep going without burning out a little, or even getting burned (which indeed I did in 2017).
Also there is overwhelm. It’s brilliant that the blogging scene keeps mushrooming – but it’s also that much harder to keep up.
And frankly ‘the autism conversation’ can feel a bit Kafkaesque these days. Working to counter prevailing narratives is a hamster wheel. The more you repeat the mantras – not broken, not a puzzle piece, not ‘with autism’ – the more they seem to come back at you.
It can feel like no one is listening – the majority aren’t. Perhaps they won’t or maybe they can’t? This is a question which troubles me greatly.
Yesterday – because my grasp of language is slippery – I found myself looking up the meaning of the following two words.
Realising quickly that I was out of my depth (I don’t really get the genres this language belongs to and I’m keen not to give the ‘aliens’ trope any additional help). But I am left with a craving for a vocabulary to express the inability of non-autistic humans to see us as we really are.
In the double empathy bind Damian Milton describes a difficulty in the communication process which originates from both sides of the ‘neurological divide.’
But I’m left wondering one thing. If I am human (and I am), and if other humans can’t see me as I am, what does this actually mean in terms of my embodied existence?
Why so difficult?
Cleary I’m struggling to identify a feeling. A feeling of being, and yet of not being – a lifelong sense of alienation and wonder(ing). At the weekend I momentarily toyed with the idea of being a replicant. And then thought about it in reverse. What if everyone else was a replicant in this warped narrative of othering? Hah, see how you like that!
Personal truth and authenticity seem to be at the heart of this – along with an uncanny sensation of a shift in time or space between us; a parallelism of embodied experience in which we can’t quite sync enough to grasp the nuance of the other.
And then I get it. No-body actually ‘gets’ anybody else (no matter how close they might feel, no matter how much or how little imagination they might possess). Surely all people really do is transpose their own experience onto others, period? If the embodied experience doesn’t match you have to try harder and ultimately take a leap of faith because you want to. (Tell me if I’m wrong.) I feel that the extraordinary writer Carson McCullers gives us a piercing window on this phenomenon in her debut novel, The Heart is a Lonely Hunter.
This goes for us all and – simply put – among autistic people there can be a much easier fit, and a higher chance of matching experience from which to form a bond. But it’s never a given.
You probably have to feel invested enough, and be willing to go to new places inside yourself to ‘get’ autism as a non-autistic person. You might even have to be prepared to lose your moorings (as autistic people have to among neurotypicals) in order to find the empathy g-spot?
Most people perhaps wouldn’t do this by choice. They might fear never getting back to themselves again (welcome to that one).
I don’t mean to say that there aren’t any neurotypical people who’re willing or able to do this, and do it while also holding on to their own boundaries (this last bit is very important). And god bless those who go for it and succeed. We love them.
But what I do think is that our daily efforts are largely a blank to most people, and the intelligence behind our multiple coping strategies is overlooked. All that’s often visible is the ‘getting things wrong’. Ingenuity, inventiveness, resilience and the sheer courage involved in managing our lives is an unseen entity, and indeed a valuable resource. Neurotypicals could learn as much from us as we are forced to from them.
But I’m beginning to feel it’s not my job to keep saying so ad infinitum. So I’m keeping schtum for a while. I’m not leaping about and waving banners, not until I can work my way through the sinking feeling that I need to try to be effective in other ways.
Ah, and I bet this is another staging post in the late diagnosis journey of becoming. In fact I’m almost willing to put money on it. At the very least I’d like a change of scenery from the hamster wheel.
I’ll still be working behind the scenes, but I’m good with quiet for now.
February 18, 2017 § 2 Comments
I wake up and I am in a foreign country.
I am not the same shape I used to be. Literally I am heavier – when for decades I was almost too light. Fearing perhaps to occupy too much space. Now I am more certain (though still hovering) and there is more of me it seems.
But this is not the only change.
Each day I wake and stumble to my laptop. News. Views. News.
Are we near to armageddon? How near?
I follow trails – endless trails, down endless rabbit holes it seems, which echo with endless bile and all that political chatter. Not idle. No. But quite quite mountainous.
And yet my ‘unusual brain’ (a bloodhound of sorts) hunts on (and on). Seeking patterns to arrive at meanings. This time predicated on fear.
This is what I do. What I was born to do. With a thirst to know.
But it occupies me. Engulfs me. And I was warned not to.
And this is how I come to be in another country – not close but distant.
But somehow the change in me is greater, although you could say that extraordinarily the axis (internal and external both) are spinning (not turning) simultaneously AND in opposing directions. SO that the largeness of it all is rather more than faintly disconcerting.
The shape of me, the shape of IT. IT being a world mediated through the click, click, click of my machine.
Important to understand that the physical spaces surrounding us have not changed. Though they may yet. When bins are not collected, when welfare ceases to exist. When UK becomes officially FU (FUCK YOU) and goes it’s separate ways.
In the same way I don’t want my country to be chained to Putin or his puppet Trump, I do want to live and preach autism as identity, culture, freedom and a right.
What shape is it though (this autism I mean). What shape am I?
And here I am my best friend. My bloodhound brain. Will. Sniff. Sniff. Sniff. Until I know what and how to be.
It is happening – both inside and out. The revolution is coming.
How terrifying and extraordinary (both) to be living in this moment. Of personal discovery and political threat.
I watched a brilliant Up Front programme on Al Jazeera called, The rise of populism: Should we be worried?
My take out is that we can no longer take many of our fundamental rights for granted. In truth disabled people NEVER could.
ACTION is required. And yet it always was. It simply means I. We. Will have more company.
In this sense my timing is good. I. We. Those among us who believe equality of human rights must begin to define ourselves, own who we are and occupy more space.
My search for meaning. To understand. Is yielding results.
No, no. This is not me being engulfed. It is research by immersion.
Autistics own it.
Kick that talk of ‘obsession’ – this is how WE work.
February 9, 2017 § 3 Comments
I’ve begun to talk more openly about the nature of the challenges which affect my working life.
The other day I shared on Twitter that I was having a bad sensory day, not really expecting any kind of response. Minutes later a bunch of seriously thoughtful notifications came through and I found myself breathing more deeply, and a definite prickle behind my eyes. Tears! Not quite – but almost. How long have I struggled without knowing my struggle? How difficult at my age to begin to say it…
I have an important meeting today. It takes place in a city which is easily accessible by train or car. I could drive or travel independently by public transport – and the single journey can be made in just over an hour or two.
The car journey is easier in one sense – a controlled environment, limited walking and a door to door experience. Yet a round trip means calling on almost 3 hours of mental concentration. Getting there is the lesser challenge but driving home after the exertions of the day will be extremely taxing. Mental exhaustion affects coordination and so driving requires hyper vigilance (way to ramp up anxiety levels!) I will arrive safely but be incapable of talking to my family. Recovery could be a long while.
A train ride is easier in another sense – getting on and off require focus but the main event can be spent in drift mode if required. Yet the train adds in a journey to the station at either end (walking or on a bus/ taxi). The sensory environment in each case will be unpredictable – sound and olfactory challenge can go a multitude of ways ranging from pleasant to nightmarish. Lighting and ambient temperature are in many ways more significant to the sensory load in my case. Navigating new routes weighs in like a tonne, which can be exhausting.
Just months ago I would have taken a physical journey for such a meeting.
But there would have been tremendous consequences for me and my family, and my capacity to pick right up and work the next day. My journey would not begin and end with the train or the car. I calculate that such a journey with a meeting of this type would have a major impact on my ability to function. The number of days lost is never predictable, only that there will be a significant sensory hangover with a loss of energy and resources. Modalities can shut down entirely – loss of speech or the ability to tolerate sound or light are classic effects. Retreat to a dark and quiet sanctuary for recovery time is unavoidable.
I’m getting to grips with why and hoping to do so in a more formal and systematic way but for now this is what I’ve got.
There are multiple tasks involved to arrive at my meeting, tasks which are usually obscured by neurologically biased expectation regarding functionality.
The ease with which any person can navigate the tasks involved is probably dependent on sensory regulation, and calls on a sensory system which is predictable and filters input without disruption or delay.
We know that non-autistic people experience regulatory difficulties too – at times of great stress, through drinking too much caffeine and according to natural variations in this population, (anxiety, indigestion and insomnia are not ours alone!) Such difficulties are known to affect functionality in the short term and health in the long term.
Imagine that for the autistic person this can be exacerbated by ‘ordinary’, or rather, ‘neurologically biased’ work demands, such as an out of town meeting.
I think that for ‘neurologically biased’ we should read neurological privilege and allow that working accommodations begin right there. But first the bias must be revealed and spoken.
So today – in a few moments in fact – I will arrive at my meeting via Skype. This is the kind of accommodation which for (by now) obvious reasons can be a deal maker in how well I cope and recover from the effort of decoding a multiplicity of interactions with my new colleagues.
September 1, 2016 § 13 Comments
This is about when neurotypical (NT) people over-identify with an area of autistic struggle. If you’re autistic you’ll know exactly what I mean, if you’re NT – I’m not being rude but – I could be talking about you.
Why complain you ask? Identification is surely good?
Well…no actually, I don’t think it always is. In fact, this is something which can get in the way of autistic people being heard properly and fairly accommodated.
Many autistic people experience this over-identification. Often NT people begin to think that they themselves could be ‘a little bit’ autistic, with a matching and equal array of challenges.
It is a natural human response but it must be curbed when it comes to neurological difference.
This is not empathy. In fact this blocks empathy. Such NT responses are acutely demoralising for autistic people because they minimise our struggle.
And today my heart sank a little because…
Yesterday’s blog post about autistic artists and the inherent difficulties within professional structures and systems – including Arts Council England funding application processes – is already attracting the ‘me too’ response.
Autism poses unique challenges, which are not faced by NT people. This truth has to be absorbed more widely.
More specifically, if NT artists find the professional structures of the art world hostile and difficult to navigate, that sensation should be magnified twenty fold to understand the barriers to autistic professional progression.
A core challenge of autism resides in the specific area of social pragmatics, which just so happens to underpin every aspect of managing a career in the arts. Strengths in social communication are pretty much key.
This is why – of late – I consistently use the term autistic, rather than the terms neurodiverse/nerurodivergent in my blogs, because I believe specificity can be helpful in certain contexts. We are part of a larger group who are not ‘typical’, or rather which makes up a neuro-minority for whom existing societal practices and structures are disabling.
Yet we need to signal clearly exactly what our challenges consist of and I would like to try to articulate this the simplest terms regarding a defining and core aspect of our struggle.
The extreme emphasis on, and burden of social communication within an artist’s professional life creates a gross inequality for autistic artists, which operates across the board and at all levels.
I believe that if more NTs can manage the job of empathising with this – rather than imaging that they share in this singular predicament – we will have made progress.
Every glimmer of genuine empathy really does help us move towards action and change.
August 31, 2016 § 3 Comments
It’s been a rum two days.
First, a hateful article in a UK newspaper, which I’m not going to quote or link to. Defamatory language about autistic people can and should be challenged, but traffic denied.
I refuse to amplify ignorant, stereotyping voices, and the suspicion that it was click bait all along settles in.
Second, I find some very old comments on a news feature on my art blog site which relate to my video of February 2016 in which I critique Arts Council England’s funding application process for neurodivergent artists.
Comments which would make any sentient heart bleed.
“I have accepted a residency in Iceland but I don’t think I’ll be able to go because the task of finding funding appears to be beyond me.
I am also neurodivergent. I can’t seem to forward any of my projects because I just can’t overcome my disabilities effectively enough or find the help I need. Today I am literally just sitting crying because I can’t see a way forward…”
And suddenly I find my tolerance at a low ebb. I can’t sit back and say and do nothing. So I begin to Tweet – to various relevant bodies even though we are way after hours in the UK. These are tiny public acts, liable to be missed, and I’m suddenly also sickened by the imposed invisibility of so many of my fellow autistic art professionals. It’s time to get back on my soapbox and make some noise.