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

January 23, 2018 § 20 Comments

STU_1404DPP4_001

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.   

 

 

 

 

 

 

Advertisements

Troublesome People – a New Year’s Resolution. #autism

December 30, 2017 § 8 Comments

 

fullsizeoutput_4533

SKATING ON THE THIN ICE OF MEMORY – Sonia Boué 2017

A post about unhelpful relationships. 

You’re fantastic! I’m blown away by how many of you lovely readers have found your way to this site and even returned multiple times this year.  Though I recently hit a dry spell I’ve returned to my stats page with a thrill.

I’m so grateful, because writing on The Other Side has been incredibly freeing for me. As an invisibly disabled person, I know that online blogs can be a lifeline – and mine has enabled me to spread my wings both personally and professionally in so many ways. Having company along the way has been the proverbial cherry.

My golden rules for writing are twofold. I’m careful to write mainly about myself, and try not to speak for others. I also write from experience. This has been vital in finding my voice, and in gaining the confidence to write what’s uppermost in my mind.

Along with some pretty fabulous events and opportunities this year, I’ve had cause to understand my vulnerability in relationships. It isn’t easy to own it.

But this can be a real problem for us – perhaps especially so for the late diagnosed autistic – who may have learned false coping strategies in relationships. We may need to learn a new and very particular discernment in the people we allow into our lives. For some of us it may be news that we even have choices where people are concerned.

It pains me to say that we might more easily be a target for unhealthy advances, but I think we often can be – unless we get wise, that is. In my professional life I’m a mentor to others, and I feel a responsibility to share my growing sense of heightened vulnerability in certain areas.

Apropos of which, I’ve begun to notice a particular type of advance from what I will call the faux enabler, who can present in many forms. Such individuals seek to help others as a way of gaining social currency, or even to obscure their own vulnerabilities. To be fair, they may not be aware of their own motivations – it can be a shock to some of us whose survival has depended on the ability to be deeply introspective and self-critical, that others don’t apply the same rigour to their lives. We ourselves are surely not without fault, but we’re often more prone to fall into self-doubt and try to ‘right’ ourselves (in my experience).

Unfortunately, autism can offer a touch of glamour for such minds. The trouble with this should be obvious, and it often is for family and friends, who may try to warn you that you’re the target of an unhealthy interest. My advice is to listen.

But I’m of the view that gauging the genuine enabler is not as hard as it may seem at first. There are some clear markers. Genuine enablers tend to keep a healthy distance while offering concrete, discernible assistance (of the kind which is actually needed) without making too much noise about it.

The faux enabler, in stark contrast, will zoom in and make constant demands on your attention. At first this can be flattering – you are being wooed. But it’s only a question of time before the intense emotional needs of the faux enabler begin to surface. Once more it may not be obvious. Often we have may have adapted to be kind beyond the norm. We may feel uncomfortable, but still we ignore the warning signs. Mixed signals may be to blame for our confusion – this in itself is a clue. Being ‘nice’ while messing with your head is reason enough to run for the hills.

Yes, giving your attention to such people is to lose your centre of gravity ultimately, because their need to be needed is so vast that you will likely be sucked into a vortex of unhelpful helpfulness. Again, I honestly think this may be unconscious in some cases, but this doesn’t make it any less troublesome to deal with.

Attention grabbers, in retrospect, were always obvious. The thing to grasp is how very smoke and mirrors some people can be – heaping praise and attention on you, while perhaps trying to separate you from a core group of friends and/or dominating all the spaces you might naturally inhabit. This should be a red light, but in the moment it can feel quite natural, and even be pleasurable until you begin to notice that something is wrong. You have been socially seduced with a view to ownership – in the more extreme cases.

The key to it all, I reckon, is to be wary of any person paying too close attention to you, while indulging in blanket flattery. If this is not a romantic relationship apply the brakes at once. It’s important to understand that you don’t have to reciprocate. This is neither unfriendly or cruel. The faux enabler will soon find a new target.

Genuine enablers are usually more discerning and are able to step back into their own lives. Anyone who offers to back you up without such discernment doesn’t actually have your best interests at heart. Deep down what they want is to keep you tied to them.

Manipulation is quite an art, and I’m currently reading an interesting novel called, based on a true story, by Delphine de Vigan. Being fiction (and a thriller at that) it is an extreme and ultimately violent example – but the patterns of faux enablement are spot on.

It plots the trajectory of a relationship which ultimately serves to immobilise and almost destroy the first person narrator. Delphine plays with what she calls “the Real” in her fiction – the book is perhaps autobiographical to a point, but she deconstructs the form as the novel progresses – and you never quite know where the boundaries lie. I was intrigued by this conceit.

In choosing this book, I was conscious of looking for further confirmation of my thinking  on this subject (novelists can be so observationally wise).

It’s perhaps important to conclude with the view that faux enablers are not necessarily ‘bad people’ per se. They may have good intentions which are simply maladaptive. This is tricky, because the truly malicious person may be easier to discern and disengage from. In the end it doesn’t really matter – the only thing which does matter is you. Withdrawing from a toxic relationship is more important than being able to make a judgement on another person’s motivations, in terms of survival this is irrelevant information.

Owning our vulnerabilities and self-safeguarding come together, in my view. There is no way around this, but knowing it brings greater fortitude where social manipulation is concerned. Such wisdom is hard won and worth holding on to despite the pain of understanding that we may be susceptible to being played.

So my New Year’s resolution is to take a deep breath, and step back in making new relationships as a matter of course. And I do so hope this post will be helpful to others.

A peaceful and happy 2018 to you all.

NB The photograph which accompanies this post is of a work which focuses Anglo Spanish childhood. The book is an English translation of the poems of Federico García Lorca. Lorca was in-prisoned and executed by the Fascist insurgents under the command of General Franco, who later became Spain’s dictator for almost 40 years. 

The unmasking #autism

December 23, 2017 § 8 Comments

fullsizeoutput_370a

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!

 

 

Organising the butterfly brain. #Autism #ExecutiveFunction #CreativePractice

November 29, 2017 § 6 Comments

 

 

Exilio

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!

 

I’m not ready to say goodbye: approaching the etiquette of grief. #autism

November 19, 2017 § 18 Comments

Candles

Yesterday I visited a dear, dear old friend. She is not dying, she is living – though time is closing in.

I had left it late, not wanting to impose, not knowing how to approach this illness. We kept saying we would meet – but we didn’t find the moment.

Text messages came sporadically, and then a sudden miraculous phone call before a visit to Rome in the spring. On impulse I had sent her the wedding photos I found in a drawer.

Later she wrote me a formal thank you, in her beautifully neat and steady hand. Realising this was a way to connect – as cards can be read out loud and enjoyed as part of a conversation – I wrote, and wrote, newsy greetings on arty postcards.

Dearest,

I’m sitting in a turkish cafe which claims to be the oldest coffee house in Europe (!) waiting for L who is sitting an exam close by.  How I wish you could be here with me…

And on I would go, without mentioning the illness, hoping to send her what she wanted most – infusions of life, laced with plenty of humour. What we best liked to do was talk (for hours, about what I don’t really know) and laugh until we were hoarse. Her uproarious laughter is what rings in my ears when I think of her.

When she called in the spring, it had been like going back in time. I got the photographs! How lovely of you. Her voice was the same voice. I was astonished, overwhelmed, delirious. There was a moment of hesitation, some momentary confusion, and her confidence evaporated cruelly. But it was only a moment. I love you, she said. I said, me too! I hung up with the firm idea that we would meet after Rome, but we didn’t.

Time passed, and I waited. In the summer I began to send photographs, videos, and a stream of messages from Spain. A hospital bed had been installed at home.

What can I do, I asked? Write, write…she loves to get cards from her friends. So I’ve been sitting in cafes, writing family news. I’ve reminisced about the old times, filled with do you remembers.

And in the past few weeks I sent messages to the family, but my need for clear signals probably got in the way.  I’ve been wracked by hesitation and worries about etiquette. Without a blueprint I admit I’ve been quite lost.

Then suddenly a message arrived, she wants to see you.

Yes, yes, I’ll come anytime, just say!

But we lost the thread again. They must be full tilt, I imagined.

A friend called, and said, I went. In the end I just went. 

But I couldn’t just go. And the waiting (not knowing how to proceed) was agonising.

So I radioed in my condition. Please forgive me for troubling you at this difficult time…I opened out my autism like steamed envelop.

The message came a few days later. Come, come now.

And so I did, and travelled through the filthy autumn night, a darker winter threatening  with each curve of the road, with each swish of the wipers, not knowing, just not knowing what I would find.

As I rattled in the back seat of a hired cab I became drowsy and sank into a reverie where memory enfolded me. Unpicking the years, each one (more than 30) was brightened by her smile and the laughter which crackles in my ear at the thought of her.

The door is always open, the text message vibrated as the car sped closer. This is code for don’t ring the doorbell (I decided). I imagined that it might disturb her.

She is tired the message vibrates again, so very tired.

Sustained by my memories I pushed at the handle with more self possession that I knew I had. I’m entering a zone of trust, I thought. I am here at last and I am welcomed, SO welcomed.

I want now to record and relive this moment.

She is tired, she is so very tired. And I’m not certain that she knows precisely who I am, but she is who she always was, and gorgeous in her acceptance of this ‘stranger friend’. I furnish details of our connection, reminding her of all her kindnesses to me over the years. Did I really? She asks breathlessly. Yes! Yes! I smile.

We lock eyes for moments at a time searching for one another. She is so tired. Sleep I say, and I will sit with you.

Will you really? That’s incredible, she says, sinking back. She closes her eyes and I survey her face, registering each feature. She is still beautiful, if not more so.

A nurse approaches brightly with a cup of tea. She can hold the cup and drinks deeply, with great speed. She brightens a little but remains so very tired. We hold hands. I tell her I love her and that she is my dearest friend – she says, you too. It’s like hearing a distant echo – but I know she means it because her heart is open with acceptance (it always was).

She’s so very tired. Would you like me to leave? I ask. My question is returned, and so I sit a little longer eking out my time. Finally, I break the spell, I mustn’t overtire her. As I begin to take my leave she reaches out to me and we hug. Though it is not a hug in truth – it is the deepest embrace to which we both hang on unwilling to let go. I have never known one like it.

She is gifted at hugging, and I leave in a state of grace, saying, goodbye my darling, to which she replies with the same.

I left with the promise to return. I’m repeating myself I know, but she’s not dying, she is living – and I’m not ready to say goodbye.

 

 

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.

1*zd_uog0wM9FDoLY9LGEDlg

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.

 

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

November 17, 2017 § 2 Comments

IMG_2040

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.

 

Where Am I?

You are currently browsing the Autism category at The other side.

%d bloggers like this: