I am an artist. I am also an autistic person. I live in sensory peril.

October 28, 2018 § 13 Comments

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I am an artist. I am also an autistic person.

The other day someone rudely crashed into my Twitter timeline expecting me to embrace a sudden urge to include me in a conversation about their work on embodied experience and the sensory world in a wholly unrelated context. I won’t say more as I’m not into identifying people, but the stall set out in just one Tweet was honestly not in my area. Not even close.

It’s a good example of a growing phenomena of people wanting some of the good stuff, ie the benefits of authentic autistic insight, but chasing like puppies at the first ball in sight.  Perhaps predictably (and with equal speed) they crashed out again when I made clear my inability to speak to their area of interest. Better to be honest. It’s okay – social mistakes emanate from both sides, (though it’s time to admit to this true fact).

What crashed into my timeline that day was privilege and false equivalence. The sensory world and our survival in it is not a drill for autistic people. So please don’t come to me with your teaching tools and professional insights. This is mere hobbyism in comparison.

You see I’m deeply interested in sensory survival, because sensory stress disables and ultimately kills autistic people. I’m not being sniffy if I don’t want to play with you, but please understand that I’m just not your go to generic autistic. I’m a professional artist trying to survive and improve conditions for late diagnosed autistics and for future generations too.

I am an artist. I am also an autistic person.

I like to say that I’m an autistic professional, not a ‘professional autistic’ – and I say this with no disrespect to those autistics who do consider themselves professionals in the area of autism first and foremost. I’m incredibly grateful to them for their work – but this isn’t my identity.

I am an artist. I am also an autistic person.

The sensory torture of a hospital environment became my reality a couple of weeks ago, and I’ve been forced to reflect how much activity must be sacrificed to manage sensory stress in my life.

It’s been a tough lesson, and I’ve been made aware of my unusual level of privilege with regard to sensory stress at work.  In fact – without my realising it consciously – my working life is organised around sensory stress.  I’ve compensated for it without even knowing it. I work freelance, and increasingly I work from the comfort of home.

Hospital was only a series of day visits to support my nonagenarian mother. BUT, as I imagined my own hospital stay, or working in such conditions, I felt the scales rapidly fall from my eyes. Here is a flavour of my long visiting hours and the level of challenge such conditions can imply.

Another layer of the autistic onion peeled away as I clung desperately to my composure under the cruel lighting of a small shared hospital ward.

Myriad whirls and bleeps monitored patients, during endless hours of uncertainty – in a vacuum of information – as staff in varying shades of uniform darted like fishes, eyes down. I was in foreign waters.

Hierarchies of need, codes of conduct, signs and symbols – all had to be absorbed – and so the decoding began. I knew I must measure each interaction carefully. Life and death hung in the air – I am busy, I am busy, the staff blared silently. How to signal that I posed no threat? How to soothe and inch my way towards the person inside the uniform? I know, I KNOW, I wanted to say. I will only take a second of your time!

It was a long game of observation over many hours. Snatches of information – disjointed – because it takes many parts to care on such a scale not all of which connect. Time, so much time…

Sudden changes. My mother was moved at dawn, a wash bag and reading glasses left behind.  A new scene – entire geographies to absorb on my arrival the next day. A ward of four women in varying states of peril. The layout is key – architecture and uniform colour signals who’s in charge, and who I must woo. Judgements are quickly made, but I am slow.

And now I am in it once more. Reliving it.

The vertigo sets in. Tinnitus too. The lighting drills into me and I fight hard to deflect it – I have along day ahead. A pitiful curtain shields a terminally ill woman as she retches up the awful hospital Friday fish lunch in the bed next to my mother’s. She is two hours at her labour, and her family rush back and forth with cardboard bowls. Can no-one do anything? She needs a private room.

My mother is quite deaf and I encourage her to take her hearing aids off.  Television now costs a bomb in hospitals and so the distraction of daytime TV is lost as no-one bothers. Ghost TVs perch on brackets above every bed. Heartlessly we do the crosswords my mother loves. She is losing heart and fearful that she will never leave this place. I’m desperate to keep her spirits up.

Later I encounter the woman’s son at the nursing station.

Your poor mother, I’m so sorry we did the crossword while she was so unwell. It had felt callous and uncaring, but what to do? You were right to distract your mother, he said kindly. We exchanged stories, which somehow led to a shared history of watching the 1970s TV series Crossroads, famed for its turgid scripts and wobbly sets. It was equally adored and ridiculed in its time. We managed a laugh, but his mother was dying.

This was beautiful and terrible. I felt intensely connected.

Hospital time is not the same as in the outside world. To enter is to surrender your agency to both the care and will of others, and to a system. That system is housed in the kind of environment that I’m sure no-one likes, but has people like me scratching at the walls to get out.

There were screamers in that long corridor of rooms and wards. Generally the screamers got their own room. I’d be a screamer for sure.

On my third day of visiting I checked out at 9pm, drove to my mother’s house in a complete daze, and resolutely left the lights off. I didn’t want any food. I couldn’t swallow. I couldn’t speak. I ignored my dear sibling and their family and went to bed in the spare room fully clothed, jabbering to myself, it’s just a meat factory…. When my husband rang me all I could do was bark like an angry dog. It’s often the person you trust the most who feels the brunt of your sensory distress.

I am an artist. I am also an autistic person. I live in sensory peril.

This is my admission to myself and to the world. Mainly, I manage my life, I am happy and I am loved. But it is very hard indeed when I am out of my bubble.

I have had many accidents in my life, falling off my bike on a major roundabout is the only one I feel comfortable sharing. Having witnessed several cyclist fatalities in Oxford city I now don’t cycle because I know my physical limitations. Accidents of this kind are due either to a sudden onset of vertigo or sensory overload.

This is something I wish all hobbyists to understand. I’m not hostile and I’m not angry. I’m just busy trying to survive.

 

 

 

 

 

 

 

 

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Saturated – losing my mojo, & the question of embodied existence as an autistic person.

January 23, 2018 § 20 Comments

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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.

halfling

undead

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.   

 

 

 

 

 

 

The unmasking #autism

December 23, 2017 § 8 Comments

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A post in which I write about late autism diagnosis and masking. I speak only for myself (as ever). Some autistics are not able to mask, and others may not unmask in the ways I describe. 

I’m more than a little wary of making an analogy between the unmasking process in adult autism, and addiction. It’s not the same thing at all – and yet the demands to perform neurotypicality are both toxic and habitual (by societal demand).

The journey of becoming more myself (as an autistic person) is one of awareness and self-discipline. A diagnosis of autism has meant I’ve had to identify the deep run socialisation that goes counter to my neurology. This essentially means learning to stop using the camouflage strategies that have helped me survive in the social world.

Tuning in to others, adapting and moulding ourselves to their perceived needs is indeed survival mode behaviour, which has been called masking. You can imagine how tiring it is to maintain this over time, and why recovery periods are needed. The concentration and adrenalin needed to get through certain situations can be tantamount to sitting an exam.

One especially heinous side effect is that you can lose all sense of yourself. It seems that imitation lies at the core of this adaptive behaviour, and inhabiting other personas can (in my experience) leave you feeling hungover and disorientated for days to come.

But what happens when you begin to unpick this learned behaviour? What happens when you stop shape-shifting because you’ve understood how much it’s harming you?

This is a gradual process (in my view) which also ebbs and flows. There are still many occasions where masking is required. I still slip it on unconsciously at times, but with a growing sense of awareness.

I’m learning all about giving up masking right now, as I’m full tilt on a project and simply can’t combine this level of focus with successful masking. My project burns away at the waxy candle ends of my mind at 3am most days. I have a tight deadline, and I need to apply new skills. I revel in every moment of it.

Sure I’m in a tight spot and I don’t enjoy the insomnia, but I’m stretching my mind and can wallow in the glory that is hyper-focus!

It just means I can’t pay much attention to social niceties, and so I’ve gone monosyllabic. Social media stretches like chewing gum before my eyes. I’ve started to cancel appointments.

Yet I find that I like myself more and am increasingly more content.

Who knew that a smily face or hand clapping emojis could be such incredibly satisfying shorthand? Bless their makers, for they say everything you need when you don’t have the time or resources to mask. I find, for example, that I most enjoy leaving a one word comment these days or a quick social nod with a like.

It makes me feel solid and good.

Concision is a new find in my social lexicon. Just say less!

This perhaps should not come as lightbulb discovery so late in life, but when you’re socialised to be a pleaser you tend to provide substantial amounts of social glue.

But unmasking means changing habits and changing thought patterns too. Unmasking means I can begin to find my own contours and stay me shaped for longer. This makes it easier to locate myself if I have to mask. I can recover more quickly too.

There are still major obstacles to overcome, but this is new. This is revolutionary!

 

 

Autistic resilience: talking up competence.

February 25, 2017 § 18 Comments

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(Work in progress on the theme of resilience, © Sonia Bouè 2017)

This week has been rocky. I want to talk about anxiety.

Anxieties collide sometimes don’t they? Stuff can accumulate and escalate. World events, a health glitch, a seriously upset neurotypical (NT) friend.

(For the sake of clarity. I should stress here that my friend was not upset with me but rather shared their distress with me).

For an autistic person this can rapidly begin to feel ‘disproportionately’ dark.

What I mean is that for autistics the confluence of events within a short time frame is often what proves disorientating, and I’m trying to analyse the cause. I think that probably some of our anxieties are related to what I think of as imperfect information in the moment. I find this a useful phrase when applied to autistic styles of perception in a neurologically  biased  world. It’s the difference between playing poker or chess – in the former the cards are concealed during play and in the latter the whole state of play is visible throughout. In an NT world we’re playing poker.

I’ve added ‘in the moment’ to my sentence signalling the potential to disentangle events in time.  We are not incapable and we are not helpless – with enough space (and/or support) to do so we can process life’s social and emotional  vicissitudes in our own ways.

Autistics process sensory data and social interaction in a multiplicity of different ways from the majority neuro-normative population. This (logically) creates a very different bank of information from which to draw inference and make decisions for autistics. The world hooks up differently around another set of priorities.

But its even more complicated for us than just this – as this majority population is (of course) made up of individuals. Result? A mountain of permutations of ‘missing’ data for autistics to deal with in ‘real time’.

A literal mountain, which I’m going to call Mount Blank. Yes.

And it really is a BLANK until processing kicks in. This can feel like a dense fog laced with school girl dread. But I find that it’s often possible to simply push the feeling away and move on. We can be resilient like that. Perhaps we underestimate just how hard we’re working everyday to keep afloat in a world which does not support our divergent neurologies – and it is this effort which exhausts us.

But back to Mount Blank. Standing at the bottom can make you feel terribly small (echoes of my school days again). Perhaps this is why a series of unfortunate events within a short space of time have the potential to crush the soul – you are a child again. As the mountain of imperfect information grows it can feel as though you’re shrinking before it.

World events overshadow all out lives at present, but I think that for autistics it’s often the ‘micro’ incidents which stack up without us realising their impact.

And the causes of our confusion are not sensory or perceptual alone, they also lie in never knowing if people are saying what they mean – rather than just being polite, trotting out platitudes or worse. These habits of neurotypical obsfucation add to the scale of Mount Blank. Worse still (I might add) is being versed in this culture as an autistic. Oh the tangles! As you venture your polite falsies (as I’ll call them) and tie yourself in lying little knots.

And because no-one quite tells social ‘truths’, when things go wrong or just feel wrong (in the moment) there’s a  tendency to self-blame. Which is especially debilitating. I think this is the point at which self-compassion must intervene. Imperfect information flows from the majority game of choice and not the individual. Withdrawing from play (taking time for processing) and/or researching* the other player’s hand (many ways to do this including talking things over with an autistic and/or NT friend) are strategies  I would consider next time I hit Mount Blank.

But unpicking and thus identifying this pattern* has got to be one hell of a route to resisting it’s effects. Resilience is often knowledge plus practice.

The road to resilience is all about talking up competence – and this begins with me.

*autistic strengths

A foreign country and a bloodhound brain #autism

February 18, 2017 § 2 Comments

img_8675I 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.

Click…click…click.

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.

Autism: sensory challenge, overload and functionality at work.

February 9, 2017 § 3 Comments

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Detail from a series; LANDSCAPES OF RESISTANCE  ©Sonia Boue 2017

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.

Yes.

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.

Why you shouldn’t identify with autistic people. Try some empathy instead.

September 1, 2016 § 13 Comments

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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.

 

 

 

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