Out of the Ashes – a talk for TORCH at Pitt Rivers Museum. #autism

November 17, 2017 § 1 Comment

Out of the Ashes – notes from the frontline of creative practice on the boundaries of visibility.

My talk for:

Untold Tales of Neurodivergence and Mental Health in Oxford, a panel hosted by The Oxford Research Centre in the Humanities (TORCH) and Pitt Rivers Museum. Pod cast also available.

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Panel (left to right) Dan Holloway, Marie Tidball, Miranda Reilly, Sonia Boue & Philip Ross Bullock

My talk today is about navigating the rapids of freelance work as an autistic creative and the challenges of working collaboratively across neurologies. My recent research has been a personal journey but has included a consultative partnership in the US and many conversations with autistic professionals across the globe.

I have come to know of so many talented hidden voices, and, while my talk is about a singular process, so much of what I have to say has a wider application.

My contribution to the theme of ‘Hidden Beneath the Surface’ is a tale of struggle in which becoming visible is an ongoing process and at times a question mark. What I offer are some preliminary thoughts culled from a much longer draft report for Arts Council England.

Introduction

I am an autistic artist and creative project lead. I stand before you as a person in translation.

I form part of what has been termed the “lost generation” of individuals who are diagnosed late in life due to recent advances in knowledge about autism. In my work as a freelance professional, I need accommodations to access the same level of opportunity as that of my peers.

I am now coming to the close of a unique piece of work, a personal case study in the field of freelance project work funded by the Arts Council. The aim of this research is to design an enabling toolkit for my work as an autistic project lead, which I will also use to enable and mentor other neurodivergent artists.

The key to understanding this piece of work is that I have had to build my tool kit from scratch as my project has unfolded. This is the first time I have worked visibly as an autistic person and attempted to advocate for my needs in the workplace.

Freelance project work in the arts is often informal, characterised by highly individual working practices, and without clear structures. We need funding to create self-led projects from which to build sustainable artistic practices in line with our peers. Yet, without adjustments for the challenges involved, we can quickly become disabled in the freelance melee.

Our ideas are often powerful and original – funding us can be hugely beneficial and reap rich cultural rewards – but the barriers to our inclusion can be overwhelming. I have made it through the funding barriers, and yet my project proved disabling and needed major adjustments.

Autism as culture

Autism is both a neurological and cultural difference. We are a small minority with a unique social difference. We live in societies which expect and demand from us a social orientation and aptitudes which are quite other. This is pervasive and disabling in ways not easily recognised or understood by the majority.

But those who work with us don’t need to ‘get’ autism in its entirety – this is a big ask for our colleagues. Indeed, the demand to share personal information about ourselves to gain access is an issue in itself (Mia Mingus). In an ideal world, our needs should be accepted without question and active measures taken, but in reality, they are mired in social complexities, and we are currently forced to navigate access via the very social codes which can disable us.

Deconstructing the power imbalance

Aspects of my experience stand as a cautionary tale. The earliest iteration of my project floundered on the question of inclusion despite this being its primary goal.

The bare bones of my situation were that I had agreed to work collaboratively to shape a project around my needs. I had lent my creative idea, and my neurodivergence was the rationale for funding; but still my needs became submerged. So how did this happen?

Well, I think we need a wider understanding that effective inclusion is a two way street of adaptation, and that accommodating autistics requires the will to focus adequately and make significant and responsive behavioural changes towards us – especially in close collaborations across neuro-types.

And, while we may seem to speak the same language, our innate human difference as autistics can be greatly misconstrued, and our value as the very people who can generate ideas and employment can become easily obscured in practice.

There exists a certain ‘tone deafness’ to the nuance of our autistic being, which has been dubbed the ‘double empathy bind’ (Damian Milton).

Neurotypicals find it difficult to relate to and engage with autistic experience, and vice versa.

A mirror world exists in which the only difference between us is that of number. I promise you that many of the ‘flaws’ suggested by the deficit models of autism can be aimed at neurotypicals from an autistic perspective. This has perhaps been my profoundest piece of learning.

Project leadership and design

To lead a project, I need to work in ways which minimise my anxiety. Anxiety is a constant for many autistic people, and can become disabling.

High standards of professional practice can be extremely helpful in countering anxiety at work.

But my project had unwittingly placed too much reliance on a single means of access, and I was responsible for outcomes without being able to move the necessary cogs directly in an ambitious and complex piece of work.

This was hugely inefficient and anxiety provoking, and at times it seemed my project had been built on quicksand.

I’ve learned that enabling project design will include multiple and direct access routes, and allow for a hands on approach in all areas where outcomes matter, also that truly successful access must be written in at the point of design and not simply added on later. My toolkit and my thoughts about project design have begun to merge.

Social labour

In the informal freelance arts sector, there can be a high reliance on NT friendship codes and relationships.

Autistic access needs can be socially misunderstood due to prevailing norms and the emotional needs of others. It isn’t easy to find a way to tell your colleagues that the emotional labour they take for granted can be taxing enough to make you lose the power of speech later in your day. Invariably, people tend to feel that your needs don’t apply to them, because these norms are so powerfully dominant and immediate in our lives.

But it is beyond stressful to decipher and manage certain types of emotional demand embedded in social codes at work.

My mid term project hack was to establish rules for contact, and filter interactions by limiting contact time and channelling all communications to one email address.

These simple adjustments quietened down all noise which was not work related. Some forms of invisibility can be a very good thing.

Masking and trauma 

But generally we have to mask or otherwise camouflage autism in the workplace, and this is exhausting and destructive in the long term. It is this very issue my research seeks to address.

It is genuinely hard for colleagues to understand this, because autism can be invisible even when we try to explain ourselves, and such failures of communication can be genuinely traumatising.

Our struggles can be made clearer if we talk purely in terms of access and equivalences with other examples of disablement. The will or ability to adapt to our needs, however, lies in the hands of our colleagues and is not often in our power to influence via social means of negotiation. This is the nature of our vulnerability as freelancers.

Conclusions

As autistic professionals we face a bewildering tautology. In order to become visible, we must express our needs in translation. We share language and use the same words about a sometimes radically different set of experiences. We cannot thus assume a shared meaning or understanding. This is why it is vital to focus on the machinery of access – the nuts and bolts if you like.

Translating autism is a job in itself and no guarantee of successful communication, and though I am a huge believer in cultural advocacy in its many forms, I think it is unwise to expose ourselves to this labour in workplace negotiations.

Equality, I’ve come to think, should not require that we ‘overshare’ our vulnerability (so to speak). This can serve to accentuate the power imbalance in collaborations across neuro-types.

I think that smart project design will be the kind that fits so well you can barely see it. And for this, we need the liberty to design our projects around our neurological profiles, and present our toolkits as a matter of high professionalism. For this we need spaces to think and plan autistically, and to share and disseminate our learning, which is my intention.

My quest has taken me much deeper than expected but I think my learning is all the greater for it.

Visibility is not for everyone, because privacy really does matter and may be crucial for wellbeing, and the layers of our suppressions are multiple and complex. But I have found the urge to test these boundaries has brought the richest of rewards – that of personal and professional congruence. I am profoundly grateful to the Arts Council for this opportunity to develop my practice as an autistic creative.

In becoming visible, we encourage others to do the same. This creates momentum and so can lead to change. But, in doing so, we can be measured in what we share, and this too is our right.

 

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We are pioneers! Join us on our new autistically designed, built & curated project website! #autism

November 17, 2017 § 2 Comments

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We are a “lost generation”, who are finding themselves. We’re adult autistics, diagnosed later in life, and we are all pioneers!

The truth of this hits me everyday as I find new people to marvel at, and so many new voices emerging from the shadows of invisible neurological difference.

Yet, being first is both exciting and difficult. The birth of my project The Museum for Object Research is a perfect example. We have struggled to come into being – but we have arrived at last!

We’ve grown from being a small WordPress blog (now deactivated) into a website to be proud of.  So please do check us out at www.museumforobjectresearch.com We have migrated to a new host, to accommodate all the wonderful content we have gathered during our recent Arts Council funded research & development period.

Currently, we are still listed on WordPress, but you won’t find our blog posts on the WordPress Reader when we publish new content, so do make a visit, you can now subscribe and explore our exciting new features, including the, Autistic Voices, section. We also feature our new autistic initiative, WEBworks.

Objects can can have a very particular resonance for autistic people. I am no exception. my connection to objects is joyful, and at times playful. It can also be deeply serious. I’m interested above all in objects as a language which transcends the need for words in creating meaning for us.

You can tell I’m excited, right? Right! So do pop in to see what all the fuss is about.

We’re also looking for content – in particular for the, Autistic Voices, section – where the focus is on autistic relatedness to objects.

If you would like to contribute a post contact me here.

 

When only autism will do.

March 10, 2017 § 26 Comments

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Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing. 

This post is about access and exclusion. 

It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.

And if you say thank you very much for all your kindness  but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.

This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody  – unless you fancy a nice slap down that is.

Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.

Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).

What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.

Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?

It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.

SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.

This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.

So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.

This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.

I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.

I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.

I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?

My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.

My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.

And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.

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.

Days of Broth (and a red ballon)

December 30, 2016 § Leave a comment

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It’s been my first autistic Christmas. Well the first one since my diagnosis (in March).

In the run up I was less than enthusiastic – I’d managed to get pretty run down this year with no time to process events due to an extraordinary heavy workload. Christmas was almost here with no time to prepare. Or so it seemed to a tired brain. Until several days beforehand.

And then it dawned. Christmas wouldn’t be the same this time. We could take all of the pressure out. And we did. Mostly.

I felt joyful.

Decorations went up late and were minimal.

We had no radio blaring carols.

I refused to buy too much (and nothing which wouldn’t be useful), and avoided the sales.

When I popped into town I  gave bank notes to an elderly woman sleeping rough instead.

I watched some carefully chosen DVDs but no TV.

I stayed away from Social Media (except for a couple of positive exchanges) and blocked a few random Twitter haters who found their way onto my timeline.

Mainly I stuck to my Bulletproof diet – so my digestion didn’t suffer.

I learnt to make broth over the holidays – the meanest broth, which could probably raise the dead. Ordinarily cooking isn’t really for me but with time on my hands I got my mojo back and rediscovered the soup queen in my soul.

I gave my attention to family, but allowed them to scatter to the four corners of the house.

And I didn’t feel under siege or responsible.

I saw a short 1956 film called The Red Ballon. It’s so beautiful! It speaks to me in a language I understand as autistic. A language of objects and poetry.

It’s taken me so many days to wind down but soon I’m going to need my routine.

 

 

The unlearning #autism

December 22, 2016 § 4 Comments

d163a74fbf063ade79deeffd73194a3fAwareness 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.

 

 

 

 

 

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