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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#AutisticMotherhood Misrepresented

April 27, 2018 § 8 Comments

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Work in Progress in the Studio © Sonia Boué 2018

 

I’m breaking a rule by writing about a play I haven’t read or seen, called The Big Things, by Mike Heath, which has recently stirred unease among autistic people, autistic mothers in particular.  The Big Things, is ostensibly about autistic motherhood but from what I hear this subject is never truly examined in the play.

Yes okay, I’m going on hearsay (from autistic women who’ve read the script and one who’s seen the play) but this is more than good enough for me. I feel I’ve given both playwright and production company (Kibo) more than enough of my time in the past few days.

Autistic motherhood, in contrast, is a subject I know intimately from the inside, unlike Mike Heath.

Mike Heath, and Kibo Productions have stumbled into a PR nightmare in taking on this subject (it seems) without sufficient knowledge or research. The real shocker for me is that this play should be Shortlisted for the BBC Alfred Bradley Bursary Award 2016.  Culturally speaking, no-one in the room sees autistic women. Let alone do they see us as creatives who might want to (and do) write our own plays about ourselves.

But I think this play slipped through the net, as it were, because it’s not really about autistic motherhood (how could it be?) No – this play is about how frustrating a fictional neurotypical man finds it to have a relationship with an autism stereotype. She’s a cardboard cut-out, dude. No wonder….

I should explain that as an autistic mother my greatest fear about this play is that it could gain success.  And that the portrayal of “Grace” (ironically named as she has no grace?) could develop the legs of a Rainman or a Christopher (Curious Incident in the Nightime) and go walk about. Such figures stick and we are landed with them, unable to shake them off for decades. I literally shudder at this thought.

I wouldn’t suggest that a neurotypical man should never write about autistic motherhood, for what is fiction if not the work of imagination?

But I admit I’m not keen on the notion of neurotypical men writing about autistic women at this point in our cultural emergence (for reasons of historic and systemic ableism and patriarchy). But if they must, at the very least they should do the homework (which means consulting actually autistic women who are mothers, and hiring us as sensitivity editors).

If they must, they should do right by us and avoid writing harmful stereotypes. But this sounds like a horrible play, which does exactly the opposite.

At one point in the heated Twitter debate things went a bit dark. Were some of us trying to force their creative to do something against his will, Kibo Tweeted, somewhat petulantly I thought. Er, NO.

Up until this point it had seemed they would do their utmost to put this living howler right. They’d seemed hapless and merely ignorant (although they had tweeted inaccurately that the National Autistic Society had read the script for them). No-one was calling out malicious intention (that I could see) or being in any way coercive – not at all. It’s my experience that autistic people rarely feel they have power in such situations – this is the whole point.

Somehow as a group we had overstepped the mark for Kibo, and trust was on the wane on both sides. This irony shouldn’t be lost.

A group conversation online can go in many directions, and meanings misunderstood. But we’re rightfully angry about The Big Things.

I wish Mike Heath had not had the sense of entitlement to write this play. He was, of course, free to write it – but no one said autistic mothers had to like it, or quieten down while others mop up the mess.

Autistics are a minority group who don’t have cultural representation (although we’re edging forward) – the point is that we don’t yet have a voice. The voice we’re presently conferred by others thus becomes crucial – each time. Each time someone who has a platform writes about us and gets it wrong we’re pushed back.

This is vital for autistic women who are mothers too. We have been even more overlooked as a demographic.  We’ve been either unimagined (as not possible) or maligned (refrigerator mothers – autistic causation seeping from our frozen nipples to our unloved infants!)

I felt the shadow of Bruno Bettelheim in the descriptions I read of Grace by the autistic women who act as my first hand witnesses. Is it any wonder that this conversation is so uncomfortable for us all? It should be.

If you want to support the voices of autistic mothers, please read this marvellous open letter  led by Katherine May. You can ask to be a signatory in support, and you don’t have to be an autistic mother to do so.

Thank you so much for reading this post.

 

 

 

 

 

 

Organising the butterfly brain. #Autism #ExecutiveFunction #CreativePractice

November 29, 2017 § 6 Comments

 

 

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Work by Sonia Boué – 2015 Exilio exhibition. Photo by Chris Evans

Rare is the artist who can focus on their creative practice alone. My own professional life has become so varied that I myself struggle to balance the work that pays with my studio practice. Creative project development, managing the projects I create, my consultancy work, and mentoring, are all incredibly engrossing, rewarding and (I have to say it) time consuming.

It’s been a struggle to keep my own creative practice going as I’ve pushed forward all the other aspects of being a socially engaged artist-activist-facilitator, since my autism diagnosis in 2016.

I can’t complain (because I love it) but I do now need to ‘get organised’ – a term which ordinarily is an anathema to my brain.

Butterfly brains like mine don’t ‘organise’ in the conventional sense. No. Brains like mine like to organise through flow. And yet, I recognise that my in some ways super-efficient tendency to tackle work demands on an immediate – it’s in front of my nose so I’ll do it now – basis is not always going to get me into the studio early enough, or necessarily help me strategise  longer term (beyond this being my strategy, as it were).

In fact, the truth is that unless I ignore my inbox entirely, or deactivate Twitter, I may not leave the house before midmorning some days. Some urgency will grab my attention – I can get sucked down a rabbit hole of questionable use (though I maintain this is how I research, and that my best finds come about when I’m browsing), or throw myself into a fresh piece of consultancy that means I’m still in PJs when the post arrives (these days around 2pm). And then there are the inevitable meetings, meetings and more meetings – from which I must decompress.

OK, that quick-fire attention to new work leads is a plus, and can really pay off, as nothing impresses potential clients more than speed of attention to their needs – which in my case is genuine, I really do care. We autistics have to play to our strengths in the workplace after all. But could I prioritise my studio time in other ways?

Obviously social media can be a big ‘drain’ on one’s time – except for the fact that it can also act as a quite wonderful addition to the autistic freelancer’s workspace. Water cooler chat, professional networking, and a gymnasium for the ‘overactive’ mind – it’s all pretty positive when you frame it like this. I often tell the artists I mentor that some of my best opportunities have been created online, by hanging out, dawdling a while and putting great content out there as a calling card.

None of this has been done strategically by the by – it’s just happened.

Hmm.

Equally, I’ve had some major fallow periods and this has been pretty amazing too. There have been times when ‘realtime’ (how I hate the term for it’s hierarchical connotations) has taken over (as in days of old) and there simply hasn’t been time for Twitter, Instagram, and the like. It’s been edifying in many ways, involved a lot of masking (not so good) and made me intensely productive in the studio. AHA!

You see this is it. The autistic mind in my experience finds regulation tricky, and how the butterfly brain loves to flit from email to blog post at will! I speak for myself, of course, but so so often it’s an all or nothing thing for me. I’m either ONLINE or I’m OFF. Time spent away makes the social media platforms seem glitchy and a bit like Teflon – my brain forgets how to connect. People move on, the platform ‘upgrades’ and it’s all shot. You have to work at it to get back to where you were as a presence in people’s online minds. Don’t get me started on how bad the non-chronological timeline can be for autistics. We need our networks dammit! Sometimes this is even life-support.

So the prospect of creating some kind of structure for my work beyond the reactive is intriguing – how will I regulate the switches involved and will I really be ‘more productive’? My suspicion is that I will be differently productive, my worry is that I will lose out on flow. The ultimate goal is to manage it all, hold onto to all the plates I’m juggling without going into overload.

It’s my deep suspicion that much of this will require fine calibration, and that like taking vitamins (which I’m also trying out) I will be prone to forgetfulness, and lose track of the various jars which will gather dust and simply litter up the place. New habits and routines can be hard to sustain – like the over eager resolution, destined to fizzle out before Christmas.

Wish me luck. I really, really don’t want my creative work to slide away. So that’s a major motivation. A studio practice is all about turning up, and I’m looking forward to getting stuck in. After all – I should really practice what I preach to my dear mentees. Keep it going, find space for your work, carve out time!

 

Chris Packham – a watermark moment. #autism #actuallyautistic

October 23, 2017 § 11 Comments

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Chris Packham, 1987, The Really Wild Show  (source Daily Mirror). 

It’s been a little while since I blogged in this space. Life has been busy for this autistic.

I’ve learned a great deal lately in my professional life, mainly about the absolute importance of  working from core knowledge. Congruence is the buzz word right now – and from it so very many good things can and do flow.

This is all very timely and segues nicely into other areas of my life. Viewing the recent Chris Packham documentary Asperger’s and Me  has set the seal on a growing trend. I know it wasn’t a perfect programme on autism per se (I even wonder what such a thing would look like as there are so many ways of being autistic) but it was perfect for Chris.

Many will point out that this was a white male perspective (as ever) and that there was an unhelpful division between Asperger’s and autism (a false division some would argue – myself included). Horrifying sequences were filmed in the US where autism was likened to cancer with resultant ABA ‘behavioural chemotherapy’ administered. I’m still reeling. We witnessed the controversial TMS intervention being applied to a young man – a subject I myself have written passionately against in a previous blog post.

Yet Chris being perfectly himself is what we’d all like – and in this sense it felt nothing short of a miracle. We saw (perhaps for the first time?) an autistic man owning the screen quite openly – after decades of masking his autism for viewers he dropped it revealing a far more interesting persona (even than the one so many of us have admired for so long).

Yes, Chris is an even more compelling personality as an autistic – so swallow that world. Absorb the truth that our unmasking can be your enriching. And not as a beguiling enchantment (as autism sometimes is portrayed) but as a reality – Chris didn’t smooth over the areas of intense struggle which led him to consider suicide seriously on three occasions.

Okay, this programme suffers on some levels – unhelpful ideas and information slip through the net at times, but Chris holds the narrative.  His status and skill as a presenter has conferred this power (one so rarely held or shown by an autistic), and his openness can be a gift to us all.

There have been three tangible occasions already in which the programme has helped me (I mean specifics – the overall effect can’t really be quantified). Three conversations which have been eased by Chris.

I’ve been greeted by a new level of understanding and given considerations not previously offered. I have been able to say how hard it is for me to socialise with people who don’t know I’m autistic – how much I sometimes dread it, how much masking can be involved, and how I won’t sleep afterwards because my sensory system can’t quickly shift from hyper alert masking mode to relaxation. The later a party the longer it takes me to unwind, and the more impact this has on subsequent functioning for days to come.

Finally my family understand, I can talk openly with some of my neighbours, and I can tell a dear old ‘neglected’ friend why I never stayed in touch. This is down to Chris – if they’ve watched the programme a new foundation has been laid.

I’m not saying this will work everywhere or every time. I’ll still have to mask and I’ll still be met with blank faces. But I can now manage certain relationships with more realistic expectations on the other side. This feels like another watermark moment. So thank you Chris, and amen to more of that.

 

 

 

The wrong autism!

September 26, 2017 § 8 Comments

 

 

 

I have been thinking about the constant demands to adapt to a neuro-normative culture and be the autistics others would like us to be.

There’s usually a snag.

Being autistic – being diagnosed late in life – is a process (of) unbecoming.

I can’t do what I can’t do, and I can’t be what I can’t be.

Not ‘neurotypical’ with quirks –

I really am autistic.

I’m just not the autistic you want me to be.

Ah yes, and so it is.

Autism is as real as concrete or snow (except it doesn’t melt).

But you need us to fit in to your ways.

Got it. Ah yes. I got it.

I caught it, and caught on.

I’m suppose to be this, that and the other.  All things, in fact.

All things except the one thing I am.

This autism is not convenient.

Not at all.

With regrets and adieus.

This is the wrong autism!

Just the wrong kind.

Okay?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Perfect storm. #autism

July 20, 2017 § 20 Comments

 

The context for my poem Perfect storm is the research for my Arts Council Funded project – The Museum for Object Research. It isn’t about any one person or conversation, but more about my growing understanding of the ways in which I am disabled – despite being a competent human – by ingrained assumption and the double empathy bind.

This learning is born of multiple conversations within lived experience.

Predominant neurotypes (PNT) find it difficult to relate to and engage with autistic experience, and vice versa.

It’s becoming clearer to me – the more I dig in – that each and every autistic ‘deficit’, contained within both medical models and cultural stereotypes, can indeed be applied to PNT when viewed from an autistic perspective.

A mirror world exists in which PNT are disabled, and the only difference between us is that of privilege – via cultural dominance/numbers.

This kind of thinking is real. It’s foundation is (as I say above) a lived experience, which finds a powerful echo in the social model of disability.

I’m grateful to Jon Adams and Brent White for their wisdom and council in guiding me towards the clear understanding of the human rights issues at the core of my cultural project.

My thoughts about autism are community inclusive but relate only to personal experience.

———————————————————————————————————————————–

Dawn brings the perfect storm.

And skylights catch droplets in rapid succession.

Yet I am deaf to their timpani.

 

Undoing the stitches of my carefully fashioned…

…tailoring…

I have spoken for the first time of my disability.

 

A  pointed conversation.

 

But what of…

…my ‘intelligence.’

Yes! I say (quite shamelessly).

 

I do have one.

And degrees and so forth.

(Despite scoring zero for I.Q.*)

And, what is more,

I  often soar above you.

 

(The aerial view is our prerogative.

Including the ‘voiceless’ and the more visibly NEEDY.

Sharing a something you can’t reach.

Ah yes – a club of sorts.

Seemingly without a fee.)

 

And perhaps this difference.

Well. It’s irrefutably so.

Is. Also. Your. Disability.

 

The places you can’t go.

 

I am disabled.

DIS-ABLED.

But by what?

And by whom?

 

And.

What (I ask myself).

Does.

My.

Disability.

Mean.

For.

You.

 

Well…

Perhaps.

And. Most certainly.

I can read it.

In the symbiosis of our smiles.

 

And we can act like kittens.

Playing with string.

Until it’s time.

To bring the dead bird in.

 

A trophy to trying.

A cup to greet the day.

 

* My cognitive profile is not measurable as an IQ score.

For I am human #autism

June 26, 2017 § 87 Comments

 

Photo on 20-06-2017 at 16.01 #2For I am human.  (A radical statement to some.) 

And I am capable of every human emotion.

Even as I wake some days I am surprised to find this as truth. For I am othered in the collective consciousness which envelops us all.

I have for all of my years, until the last, swallowed my othering whole, so that I did not know myself as myself at all.

Confronted with myself – I found myself a stranger all the more.

But as time eeks out its knowingness I no longer falter, for I find that I am myself (of course I am) and always was that self buried under a false persona.

Stepping out from under it was like tearing off my shadow.

A false persona melded onto a true heart? Yes – I think so. Yes.

A not unsmall quake of tectonic plates.

Now settling. Becoming.

All humans wear a social mask.

All humans tire of one another.

All humans seek solitude.

My humanness is not other – it is a parallelogram of your humanness.

A mirror in which to see yourself (at times).

A mirror which defines our also separations (like a walk or a swim).

Don’t be shocked or surprised.

(And I say to parents.

My existence doesn’t threaten your child, or replace their value.)

I am both mother and babe.

And there is space for all of us.

For we are human.

 

 

 

 

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