Postcard from another place #autism

August 11, 2017 § 7 Comments

IMG_1790

These days it feels like I’m in another country. Landscapes fall away and I float  above them. Nothing is fixed and yet I feel more stable.

Life’s problems abound, don’t get me wrong about that.

No one has waved a magic wand. Yet it is possible to feel both lighter and more substantial.

I have been writing now about my personal and professional journey as an autistic woman since March 2016.

The journey metaphor is unavoidable (is it not?) Such cliches adhere to the collective consciousness for a reason. Like barnacles on a boat – they’re not going anywhere. And they’re real.

The landscapes we carry within us are the other eternal and lasting image. Humans are we, all tasked with mediating our inner and outer geographies.

You might well know what I mean when I say I’ve crossed a border. And I have.

Cliche, after cliche would like to trip off my unwilling tongue. No going back, is one such.

Early on I wrote about onion layers peeling off as I became revealed to myself incrementally, after my late in life diagnosis of autism. That is still true but I dislike onions. Day old peelings in the food recycling caddy press against my eyelids and shake a fist at my nostrils. I reach for the window and throw up the sash. Give me fresh air and landscape any day. Give me journeys too.

Eye watering in the wrong way are the fresh chops and the stale skins.

I like footsteps and most any kind of tree. A train window. The urban picturesque.

As long as the journey is circular and I am returned to myself. And daily I am. It’s the views from the windows that alter. Have altered.

More irony.

How can I be so contrary to the world? It’s shifting off its axis with the weight of the improbable. A discomfiting on a global scale shades but doesn’t dim my growing comfort with myself.

I’m sorry I chose this moment in history to have such good fortune. No actually I’m not. It’s never a bad time to know yourself.

But if I seem distant, if I’m somewhat removed, it’ll be because I’m somewhere new.

One day I’ll send you a postcard. Or maybe I just have.

Turning up for work #autism

July 29, 2017 § 7 Comments

 

IMG_1891

#3 in the Orphaned Identities series

(A photograph from my Orphaned Identities series.) 

I was recently commissioned by the Arts Council, to undertake a case study of my practice as an autistic arts professional, in order  to design a series of access measures – which may also be of benefit to others. I’m learning a great deal, some of which I share here in the hope that it will contribute to the conversation about access at work.

I research at the coalface of freelance work and in conversation with other autistic professionals. Patterns are emerging at this midway point in my funded work.

This study has thrown up something important. Namely that there can be a real difference in perceptions about what ‘turning up for work’ means when collaborating as a freelance.

In my own case I’m learning that my standards are high – perhaps usually so. Also that I need to be in direct control of my work flow, especially when a project is complex, and in circumstances where I have high responsibility for outcomes.

This doesn’t present a problem in projects with clearly defined roles with discrete responsibilities where a standard of expectation is reliably matched.  Through An Artist’s Eye was a perfect example of when this works well.

Autism is a professional asset. If you work with us you’ll often find meticulously organised people getting results, and meeting deadlines absolutely on time.

This is because we can often see the job that has to be done with great clarity. Myself, I work methodically paying attention to the parts, with an aerial view of the whole constantly in mind. Holding this level of focus is joyful and important to me. An athlete fresh off the blocks I’m running in full flow.

This is my rhythm and my method. And it works. This is so because my work and my being are as one.

So my commitment is absolute whether the work is a hard won commission with public funds, or a personal project like Orphaned Identities. I’m on it 100%.

I’m beginning to understand that a well designed project (autistically speaking) has controllable elements and can be worked through directly and systematically using flow, and also hyper focus whenever needed. While a poorly designed one has too greater reliance on third parties who may be remote, unavailable or seemingly ‘unreliable’ from an autistic perspective.

Such obstacles can seriously disrupt autistic flow on creative projects. And this represents disablement in action. Disrupting autistic thinking in a workspace, with the need for constant negotiation of terms (for example) or through distance and serial delays, has the effect of derailing purpose, and furthermore overloading functional capacity – and there’s absolutely no need for this with some careful thought to design with respect for access.

Chasing the tail of a consistently unavailable colleague (for example) can be extraordinarily stressful, not to say aversive.  Such practices are perhaps commonplace in freelancing – but can have an effect not unlike ‘trolling’ on an autistic person. The toxicity of poor design in the workplace for autistics can’t really be overstated.

Matching commitment can also be an issue, and there’s an element of luck, which has nothing to do with neurology. ‘Discipline’ can sometimes be lacking in freelance environments, which can present a minefield of wrong-footing.

Building strategies for survival is essential. And when I say survival I mean it in the truest of senses – not in the breezy way it’s used in magazine style journalism. A real dilemma that we face is that our non-autistic colleagues may not absorb the seriousness of socially disabling bias’ at work because we’re often so conscientious.

This raises the issue of training for our non-autistic colleagues. In conversation with my fellow professionals there emerges a powerful consensus among us that training must be autistic led if it is to be of actual benefit to autistic people – who after all should be the natural recipients of positive change.

As an individual in a freelance setting – my growing feeling is that designing my own access measures is essential to create the best fit for me, but that autistic led training for colleagues could be an excellent complimentary addition in future.

Currently this is all still very much a work in progress – but I’m immensely grateful to my autistic colleagues for their invaluable input into my thinking. Being able to situate our practices within community is a consummate survival strategy in itself. This is why the future direction of my research in this area will focus on networks.

The issues I raise are common to a growing network of autistic professionals – currently we suffer the demands to mask our ‘condition’ due to socially embedded expectations at work. This is seriously disabling and real access challenge in freelance situations.

 

 

 

 

 

 

 

 

Soft clothes day. #autism

July 14, 2017 § 11 Comments

Photo on 14-11-2015 at 12.39A brain aches.

But this we know. You and I are different.

We look the same.

And it’s a now you see me, and now you don’t.

Because I am fluent in passing.

This is my great skill. I look like you. I sound like you.

And when I am tired there is an introvert model – on social mode – which  dies inside to flick the switch.

Ridiculously, I walk home quite earnestly desirous of an extra leg sprouting from the top of my head. So that you might see me and know my difference without ingrained assumption.

You tie me in knots with your privilege, because that’s invisible too.

And I long to draw it, that leg. Momentarily, I check my privilege – oozing and sticky as a bag of ripening plums – but who can I offend with such a limb?! No-one. No. I’ll shelter in the bosom of that absurdity.

For each time you tell me it will be alright you deny my struggle.

Alright sounds like hammer.

Which. Pushes. Me. Down.

Alright is a privilege.

Deciding not to get stressed is a privilege.

And just so you know.

Every day is a soft clothes day.

 

 

 

 

We have the power to rebuild… #autism

July 7, 2017 § 10 Comments

Screen Shot 2017-07-04 at 21.04.57I owe a great big wet kiss to WordPress Discover Editor’s Picks for featuring my last blog post, For I am Human, on the 4th of July.

It’s brought me record likes and a lot of lovely new followers. Many have said what a beautiful poem this is – and I’m overwhelmed and surprised. It was written very quickly, but from the heart, which is the bit that counts probably.

The poem’s sentiment seems so blindingly obvious, and yet autistics everywhere know that it SO needs saying. But I’m encouraged by WordPress making the selection, and by all the positive responses.

Even more positivity flows from making something of an experiential breakthrough in the past weeks. Connecting with more autistic people online, and some in ‘real time’ is beginning to have a profound effect on my mental and physical state. I’m becoming truly immersed in an autistic culture and I’m energised in ways I barely recognise.

I’m learning how abundantly right my brain is.

I think this may also be a stage in the process of becoming.

Diagnosis and it’s aftermath was both wonderful and debilitating. Hindsight tends to brim with wisdom doesn’t it, and looking back there was a period of time spent unravelling – leading at times to something near paralysis. I felt trapped in a box of knowingness without any tools to implement my knowledge. The flat pack had arrived but there were no instructions.

There were also pockets of grief. I’d been given a golden ticket, yet I needed to mourn and let go. Overwhelmed by my isolation (being unknowingly autistic is extraordinarily lonely) I reached a natural hiatus – the lack of autistic playmates in my life was an unmet need I didn’t even know I had.

What soul crushed me on occasion, during my first year as an out autistic, was twofold – my revealed identity in the context of a lifetime, and of being the only one of me in the near vicinity. A vast sea of non-austistic humans seemed to swill around me who, however nice they might be, would never truly get me or provide the mirroring all humans need to develop shared identity.

I’ve come to think that being an autistic human can feel a bit like being constantly trolled. Non autistic humans don’t mean to, but by default the majority culture denies and rubbishes our autistic realities  – our inner truths and core perspectives. And this is pervasive.

We’re supposed to pretend and hide who we are to gain a basic entry pass, but stand on constant social trial – doomed either to erasure or failure.

Under these conditions paralysis can be understood, it would take any human extraordinary resources to find a way through. It also takes time to figure it all out.

And, if you’re conditioned to believe your brain is faulty, you can be forgiven for believing that this is mission impossible.

But I don’t think impossible has to be the final word – although spoiler alert – the ‘trolling’ ain’t gonna stop anytime soon.  The huge cultural shifts required to accommodate autistic perspectives are a long time coming, but that’s the big picture. I’m talking micro-climate here, and the ability to ‘rebuild’ our individual lives – which will feed back into the collective.

There are three points I want to draw from recent experience.

  1. Our exhaustions are in part sensory, and in part masking – and are cumulative. I’m learning that these may be lessened when we pass through post diagnosis paralysis and into rebuilding mode.
  2. Rebuilding requires direct immersion in positive autistic cultures. Access to this culture reveals a state of being in which we are not exhausted by human contact and sensory stimuli are more easily processed.
  3. Knowing who you are, knowing that you are exactly as you should be and there are others like you is the battery power we’ve all been missing out on.

Finding that there are others who are so very like me is like realising that my basic search engine is running precisely as it should. Within all our different ways of being autistic there is a core feature that is recognisable. Others will have said this I’m sure, but  yesterday as I strolled amid the honied buildings of my beloved Oxford, it struck me that we autistics are all running the same search engine and that our variety comes in the form of the different the apps which come with our unique model.

You can blame that image on my new phone upgrade – the other recent acquisition to put a bounce in my step!

Good news is, just like the Bionic Man and Woman – post diagnosis – we have the power to rebuild…

 

 

Square pegs – a touch of the ‘normals’. #autism

July 2, 2017 § 10 Comments

STU_1978DPP_001

Photo by Stu Allsop – at RE:collections exhibition 2016 with my installation. 

And lo, it came to pass that one day in the later decades of my life I experienced a touch of the ‘normals’.

But please don’t worry – I am quite okay. In fact I’m more than okay. I’m frankly energised in ways I don’t yet fully comprehend.

And again – don’t worry – I haven’t been ‘cured’ of my autism or gone all typical overnight. I am still emphatically me, only I’m suddenly a me with a growing sense that there are others quite like me, rather than me being a somewhat ropey version of you (you – for the purposes of this post being the non-autistic reader).

You see this typicality runs very deep in our culture. It seems to me there’s always a best and correct way of doing things – indeed our whole learning culture depends on such concepts and methods, fathomable only perhaps to a ‘typical brain’. Professional structures depend on this too – in fact typicality is so deeply assumed that I suggest we as modern societies simply don’t even get close to understanding this as oppression. But it so is.

Those of us who experience it simply feel innately faulty – because it is in effect the only kind of template out there, and it covers just about every thing in sight until you get to certain leisure pursuits or the kind of employment where creativity and innovation is prized, and can be self-led. We seem to have a cultural obsession with the conformity implied in ‘getting it right’ and using ‘correct methodologies’. I’m beginning to think this accounts for some of the growing tyranny in schools and professional life of trackable and measurable outcomes, in which a somewhat warped idea of accountability seems to have replaced something more human and, dare I say it, more generous.

Generous and confident cultures perhaps accept more plurality? This is where I hope we can be headed – away from the idea of ‘best way’ and one way, to many ways of doing and being.

Because it’s all right for an older crock like me to grow into herself finally, but what about those coming after me – my own kids included. To use a well worn metaphor I’ve been a square peg in a round hole (without knowing it) and it’s taken decades to discover my square peg buddies.

But I can tell you that when one square peg (autistic) mets another  – and when their square-pegged life notes are exchanged – something revelatory happens. You realise that what is needed (and always was) are more square holes. Simple. You may need to build them yourself – but that was it folks. No square holes, visible or otherwise.

Perhaps this is a newly useful if ancient metaphor after all? Let’s try it out.

So – I am after all a perfectly ‘normal’ (autistic) square peg. So is my friend. There are it seems many of us. SO many that we can’t count one another. Society functions on a round peg basis. We need square holes – in the same way that wheel chair users need wheels and ramps.

Square holes could perhaps stand as a visual metaphor for our access needs and the need for access tools to be shaped by us for us – because only we can think in square-pegged ways. If this were to be true and even useful, the steps involved might look like this.

Step one: experiencing a necessary touch of the ‘normals’ in which the penny drops. This world is not designed for me but this doesn’t mean that I am faulty. We need as many of of us out and signalling to one another as possible.

Step two: identifying the patterns of square peg thinkers and how they are disabled and mitigated against via systems which demand round-pegged conformity. This means dialogue about how our brains work in practice in ways we recognise and understand as our own.

Step three: designing, lobbying for & implementing square hole access tools and arrangements in schools and workplaces. Probably many small initiatives connecting where possible – perhaps leading to national programmes which are autistic led.

I put it out there – because growing into yourself is only the inner life hack. We need more autistic thinking to filter into the way we design education and work practices too. Having met some of my autistic square peg counterparts I can assure you that we’re pretty freaking amazing. You’ll want some of that in your school or organisation – if you’re smart you really, really will.

 

 

Autistic leadership.

June 16, 2017 § 1 Comment

 

IMG_8484

I take the entire inspiration for this post from a conversation with my friends and colleagues at ACAT in Berkeley, Brent White, Tanya Coffield and Laura Harrison.

Autistic leadership is both pioneering and not new. Paradoxes are what we do well, and while cultural advances and moves towards social justice bring forth a new cohort of autistic people who seek to lead in their respective fields, autistics have been quietly leading since the dawn of time.

What?

Well, what we can say for sure is that autistics (including self-diagnosed) are now openly assuming leadership because we have to. The very justice we seek in social terms demands it and shapes it in a glorious (if somewhat gear crunching) symbiosis with the aforementioned cultural advancements. Though on all fronts we still have a long way to go.

And here is the rub, we recognise that autistic leadership is required, but we don’t yet know the shape and form it must take because we’re forging it right now on the anvils of our souls.

If that sounds melodramatic consider this; I’m often moved to use the canary in the cage analogy for my own work and those of other autistics I know. As a people we are vulnerable to environmental hazards – as leaders this can be magnified because we must process an extraordinary volume of fast flowing information and translate experience (both frankly energy-zapping in a way that can shut autistics right down) while carrying on responsibly as leadership demands.

We also carry trauma (a particular issue  for us all but often complicated by late diagnosis), and can be ‘trigger magnets’, not only regarding our own histories but also that of others in our care. How to hold it all, and survive overwhelm and overload are in many senses not only about developing models but also about intense personal growth (insight based investigations on a virtually doctorate level and of the kind your average allistic would probably have no need for in the workplace). The workload can be incredible and almost impossible to log let alone recompense.

Yet as I suggest above, our leadership is not new. Not. One. Bit. It has simply not been recognised for what it is, or it has perhaps rather been sidelined and appropriated into the mainstream. We have and often continue to lead quietly and even unknowingly, while others seem to make the noise and get the attention. I bet it was ever thus.

But the point is that as a people we shouldn’t be lead by those who don’t fully understand us (a wider societal and historical problem that the individual must wrestle with in the workplace), also that autistic leadership should be acknowledged for what it is – the generator of so much that is good for the whole population and not just autistic people.

Perhaps the main impediment to autistic leadership is not that we must design it in our own image from first principles (though this is true as all existing visible models are allistic) – it is rather that we are not yet believed in as leaders.

This is what has to change in a wider sense, so that we can be freed to make our leadership models and create the support networks to sustain them.

I read so often about executive function for autistics, and the devastating impact of exposure to what I am beginning to call environmental hazards (the sensory world and allistic – socially embedded – expectation). Some autistic readers may feel that ideas about leadership might as well be beamed from the moon for all it has to do with their autistic reality. I have those days too and it’s hard not to admit defeat.

So I acknowledge my privilege while asserting that this is a hard and lengthy struggle for us all. Also that leadership comes in so many forms and can be so varied in scale. Recognition of what we do, on what ever level this may be, could be the start.

Self recognition may have to come first. Seeing others could be the inspiration, which is why I make myself visible. This is certainly how I began my journey with a trip to see my friends and mentors Brent White and Tanya Coffield back in 2015.

This post is for you. xx

 

 

 

 

 

Are you socially engaged?

April 25, 2017 § 17 Comments

The Forgotten

© Sonia Boue 2015

Yesterday I learned a great deal about being invisible as a socially engaged artist – in the context of intersecting minorities.

I am an autistic white Anglo-Spanish woman of middle age. My current project in collaboration with Elena Thomas; The Museum for Object Research, does not on the face of it seem concerned with the kind of social and political issues that characterise my practice. The group concept is one thing but our individual practices are another. Social engagement is woven in to what many of us do.

As I arrive in a very particular context to speak to potential parters I’m confronted with the full force of a fundamental project truth. Our project is white, though not without a core of significant diversity. I knew this – but stepping out of Elena’s car I knew it in a more immediate and profound sense.

Our whiteness as a group is accidental – but we must own our privilege and understand this coincidence as part of a wider privilege in the arts, and of course globally. We must own it and act responsibly.

As I surveyed my surroundings I drank in the crumbling Victoriana and sixties high street design with zest. Unlikely juxtapositions that shouldn’t work, that don’t work – but are fascinating when seen in relief. This is history made visible, laid bare.

A nearby mosque, kids on the streets and cars piled up on the pavements crammed along side roads, while the main artery rumbles with heavy buses heading to half remembered places.

This is an area of Birmingham – a city seemingly in a fit of constant reinvention to the point of frenzy. My old home town.

I experience this autistically – knowing that my love for this moment would be considered intense by many. All day I have been touching the edges of an unknowingly autistic childhood. I have stepped into memory like Dr Gloucester  – up to my middle –  as a series of tangible intrusions.

In another part of my brain, I register my whiteness as an exclamation mark. I feel my autism thus most often – have I let it eclipse my whiteness as I reach deep into a newly discovered identity?

I gather my senses for a meeting. Quickly I must adapt to strangers. This is my autistic challenge – to follow the conversation and decode it in the moment, to sense the tone in the room and become it, to pass as a typical neurologically privileged human. My act is now second nature with aftershow fatigue as the encore.

I have done this now so often. I know how it will go. I will appear as a privileged white woman of middle age and middle class – articulate and lively (unless my energies run down, unless the room fractures through light and sound input, or I am suddenly too cold. Unless, unless…) Unless my words fail.

But I have measured my journey to this moment carefully, I have conserved my faculties (just) by planning. Only my collaborator knows this, and she knows too that my way in to this meeting is for her  to lead, while I find my feet.

We talk pleasantly – I find my moments of entry as Elena carries the conversation. But there is a question of fit, of specific community, of reaching hard to reach groups. Yes.

I see it of course – we don’t fit, which is fine. But I won’t be unseen in my struggle. I gather my courage and my moment comes to say to a small group of strangers – I am an autistic artist.

I explain the roots of this project in my autistic practice, and my funding from Arts Council to make a professional template for my work as project lead. My voice almost leaves me  but I hold on.

I am met with blank faces.

We talk some more – the topic is back with our hosts’ agenda. This is of course fair and proper. We are in their space.

But I can’t leave this. I have to ask about our intersections – autistic and black, Muslim and autistic. I am met with a level of confusion – I’m told hesitatingly but in so many words that autism is associated with children and is a stigma among these communities. I nod. It’s a hard sell, I say.

Another level of my privilege. To have an autistic community and access to the current wave of thinking on neurodivergence.

I hold my breath and think about my people.

Did I imagine it or did my voice become a little monotone and robotic as I edged across the tightrope of my disclosure?

As I became visible did I become more stereotypically autistic – did I do something so subtle (I have awesome camouflage and acting skills) as to act up to my audience expectations of an autistic person?

It is highly possible, as my finely attuned social calculator calibrated their responses – or lack of them.

Would they now be looking at me anew?

Of course they would. And with somewhat more curious gazes.

I come away with some serious questions. How can our museum become inter-sectionally inclusive? Am I engaged enough with the whiteness of my autism? I want to turn my coat inside out and show you the seams of my difference – my many differences – which like the buildings around me on that windswept afternoon in Birmingham lay bare a history.

This is research at its best. These are the dialogues we must share.

My thanks to our hosts for their input to MfOR R&D thinking and to Elena Thomas for her part in this enriching process.

Where Am I?

You are currently browsing entries tagged with #ActuallyAutistic at The other side.

%d bloggers like this: