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 § 12 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.
August 12, 2016 § 8 Comments
Photography Stu Allsop: At RE:collections at the North Wall Gallery, Oxford.
An interesting article appeared in yesterday’s Guardian newspaper, featuring my good friend and fellow autistic artist Jon Adams.
I like this particular quotation from the piece,
“Adams says it’s impossible for his autism not to affect his work. “It’s not separate so it must inform every bit of the work I do, even at an unconscious level. I make work touching sound, finding patterns and observations from my life all woven together as one.” He feels it may even give him an advantage: “It’s both my downfall and my creative edge,” he says.”
I’m chuckling though.
“…may even give him an advantage…”
Are you kidding?
While not wishing to indulge in trumpet blowing, I have to say that autism is of course advantageous in the making of art. No question.
Jon and I have talked about this on several occasions and conclude that art making has emerged in our lives as an inner compulsion – we live and breathe it – this is what drives us to create to our best abilities. Hyper-focus, perfectionism, task completion and originality (by default we see things differently), are my four (not so) secret weapons.
This doesn’t make me Rain Woman!
AND there is a downside. In the making autism is an advantage, but it is in the professional development and dissemination of our work that we often suffer.
Professional structures are socially driven and thus biased against autistics.
It’s a criminal mismatch when you think about it.
All that creative talent and very little scope for opportunity.
What a waste.
August 7, 2016 § 21 Comments
Photo by Stu Allsop
You matter. You matter an awful lot to me. I love my fellow humans and often wonder if they love me back the same way.
Being autistic for me is largely a total blast (“co-morbid” conditions excepted). Diagnosis has opened out my horizons and I find, after a lifetime of teetering between extreme caution and bold experimentation, that there is a middle way. A me way. An existence self-determined (within the usual constraints) and mainly me shaped. I love it. Love knowing who I am, and playing to my strengths.
Without diagnosis I was often – in my own perception – the sum of my weaknesses. Holding on to the corners of my life in snatches. This was, I now think, because I didn’t know how to look after myself. So knowing makes ALL the difference to how I can live more comfortably in a sometimes hostile world.
So newsflash everyone! Autism is very different from neurotypicality. No matter how much you (neurotypical friend) empathise with me (and vice versa), your struggle will never be mine nor mine yours. We are parallel beings, always and forever. And for me parallel is where it is at. Gorgeous and fleeting or pause-full and reflective. Parallel is tops for me. Head on and glancing (in that touch laden sense) – not so much.
And so on to social contact, and one small observation among the myriad reflections that bounce across the pond of self-knowledge that comes with diagnosis.
Neurotypical people seem to cram a lot in. I’ll give you a recent example.
After one full day – admittedly a working day – of pleasant professional interaction (during which so much personal information had also been exchanged) the question of what everyone would be doing after work arose.
Hmm. I stayed quiet, while others in the group told of plans which sounded like the chapter of a novel; entire segments of buddy movies flashed before me, the jaunty theme tune of the TV series “Friends” played in my head. I struggled to focus.
As an aside – it is interesting that neurotypicals like to ask about such plans (of which they won’t be part) and I have a light bulb moment. Aha! This is so the threads of future conversations can be taken up with ease – how did it go the other night – and so on. Smooth social baton-carrying from one lap to the next of busy social lives.
I stood politely listening, nodding. My turn to speak didn’t come. It was all quite natural. No-one noticed. Except me; and I smiled to myself. Not only was the conversation about to close but I didn’t have to explain that I had no further “social plans” for the day. I could have said (in a somewhat formal in tone),
“You have filled my cup and I will now go back gratefully to my family and chill.”
It would seem to be quiet a radical statement in the context. Huh? You don’t have a plan? Er…that is my plan…AWKWARD.
Now that I’ve thought it through I see that it isn’t awkward at all. I’ll grow more confident in saying quite simply that my plan is to decompress, and thank you for asking.
But back to my theme – this “cramming” of life with people isn’t confined to the after work scene either, I notice. Social time can be followed by further social time – the cramming (for example) of a coffee/lunch/day out with me (I have puzzled) is often followed by another plan my neurotypical friends must dive off to. Needing to get back to more “urgent” socialising is a definite thing.
It can feel odd.
As in, OH?
People appear so vividly in my life that I savour and absorb them. I also need time to get back to myself, back to the quiet core of me. Too much of the other and I literally don’t know who I am.
The strangeness is that it isn’t so for everyone. That human interaction can be so casual as to facilitate a rapid pole vault from one encounter to another is quite a concept for me.
What does this tell us about the quality of social interaction in either case? I’m really not sure, but an analogy comes to mind.
Dear friends and colleagues – when we meet I’m fully with you and you are my champagne. You DO fill my cup, and it’s delicious but will go to my head if I drink too many glasses, AND I can’t go from one glass to another in a social whirl. It simply doesn’t work that way for me.
The neurotypcials I know seem to have better heads for champagne metaphorically speaking; socialising as their lemonade to my bubbly would explain why they can drink so much more.
Intensity of experience is the difference, making serial socialising as hazardous for this autistic woman as drinking too much champagne. Think of the hangover!