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.
December 22, 2016 § 4 Comments
Awareness unfolds. Eight months have passed since my diagnosis of autism, and still the realities of what this means reveal themselves to me bit by bit. Or perhaps that is whole by whole. There is so much to know and this seems at times vast – like a powerful ocean tide around my feet, or whole constellations twinkling above me.
I can’t tell how many such moments there will be, or how deeply they’ll take me to a core of knowing.
It feels infinite and beautiful. Knowledge is secure at such times – perhaps this is a oneness I feel, with the elemental. Having nothing to do with earthly life as lived via human design, by which I mean roads, houses, cars, buses and planes. The realities of the machine, and now digital age/s.
And in reality I am the most machine dependent person. I am a city rat (small city please) and like my amenities close at hand. So I’m not against that. But we have screwed things up. We have, oh we have!
But I’m not about that in this moment. I’m taking a break from all that kind of thinking, and the cycle of terror and hate we’re locked into as a species.
This is about breath, blood and bone. The only thing we truly know is in our bodies. We must trust our bodies.
Autistic people spend their lives being told that their bodies malfunction. They can’t regulate, they can’t coordinate, they cannot process.
What is true is that we can’t do it like the rest of you (you mythical ‘normals’ who are in truth as variegated as we autistics).
So I’m learning to do things my way. Be how my body needs to be. Allow my mind what it needs to function my way – without judgement or interruption.
Oh ‘normal’ world! Can you imagine what it is to be a child, to be in school, and to find nothing but interruption and judgement? And not even knowing. To not know that this is what is happening to you…
Your body learns that it is wrong. Your body learns to contort and try to be right. You learn to approximate to this thing called ‘normal’.
This is the unlearning that has to be done.
I look back and see a small child. I often hid in small spaces. Under tables and behind curtains. I was ‘naughty’ and knew I was bad. Grown ups seemed random and foolish, and school a place of boredom and lies. I noticed the arbitrary, and was not impressed.
But soon I learned to contort. When did I learn to be unimpressed with myself?
This is the unlearning to be done.
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.
August 23, 2016 § Leave a comment
I’ve had some lovely responses to a fledgling poem called Dead Squirrel posted last week. Since then I’ve been extremely inspired and of course, poetry is fast becoming my new ‘special interest.’ A huge thank you to all of you, and a special wave to Sophie Herxheimer – for a dream crit from a National Poetry Day Ambassador no less! Please catch up with all Sophie’s brilliant projects and achievements here.
I find that although my topics are at present quite varied I’m extremely interested in articulating my experience of being autistic. I can see this becoming a thing. So here is a new poem I’m working on. Again crit is welcome.
The logic of not having any
(on late autism diagnosis)
“The unusually logical approach to life can be both a positive and a negative attribute.”
And in the middle of life, I find
that I am the odd one.
And yet, unusually logical
I spill at the ballet recital,
a concert or a play,
and dumb advertisements,
which cause my eyes to leak.
But I’ll take a scythe
where others linger in the maze,
wasting time and getting lost.
And drum inwardly,
as meetings meander into jolly rambles,
worth horning on our hiking boots for!
Because crisps and sour booze
could all be had at home.
Was that the point after all?
Unusual logic confers
the cross purpose.
And I, rarely finding myself
even on the same pages,
sit and fiddle, playing catch
with my short attention span
until it’s time to leave.
© Sonia Boué 2016
June 1, 2016 § 21 Comments
(Uncertain Weather System in Place, 2016)
As there seems to be no specific aftercare following my diagnosis of Asperger Syndrome, I’m quite busy working things out for myself.
Fortunately for me this is one of my autistic strengths.
But specialist services would make a huge difference to my life. So going it alone is not entirely desirable, and yet I consider the alternatives. Would I want aftercare designed and provided by neurotypicals? Perhaps not.
It would probably end up feeling like wearing the wrong size shoes. A bad fit.
One effect of diagnosis is that I now recognise my dislike of most organised/group activities as being legitimate. It’s a genuine case of poor neurological fit. What you (the neurotypcial majority) generally like/need from a group experience is not what I like/need – I honestly just can’t relate to most of it. And with good reason.
But this can also happen to me when faced with #actuallyautistic events that somewhat resemble neurotypical ones. Please, please don’t take offence, but an autistic pride picnic in Hyde Park (I hear there’s one coming up in June) isn’t for me. Not that I am not proud to be autistic – I AM. But I don’t want to gather in Hyde Park.
There exist three main reasons for this – all autistic.
1/ Travel is stressful.
2/ I don’t like meeting with strangers (especially en masse).
3/ I have no way of predicting the fine details of the day.
But I have to confess that it isn’t just dealing with the resulting overload that puts me off. I also experience a creeping dread of what I will call neurotypical templates. Subjected to them forevermore – think all school, college and most work settings for starters – I feel nothing short of magnetic repulsion for any event which resembles these formats. Neurotypical templates for group fun or even group displays of pride seem to have the same effect.
And so I ask myself what autistic templates might look like – and I get no clear answers. I just know I don’t want more of the same. Too many uncomfortable associations, too much time spent in exhaustion and recovery. I want my time to count, and I want my pride to show without the usual consequences for me.
Pride in a sense – in my sense of it – is about saying NO. No to neurotypically designed social spaces. Pride, surely, must contain some measure of self-care too.
With this in mind, ( while hoping fervently that the autistic people attending this year’s pride event have a blast) I will be sharing my pride online.