Sharing practice as an ‘autistic artist’ – some personal observations on ableism.

December 5, 2018 § 3 Comments

Sonia Boué, Dirt Cups, 2012

I’m still processing. 

This is a phrase commonly heard among a particular cohort. The group in question is a network of autistic women (I’ve come to know) who’ve been diagnosed autistic late in life. 

What I’m processing (to get back to it) is a first ever experience of sharing my practice as an ‘autistic artist’. Previously I have only ever had cause to share my practice as an artist, period. Let me tell you, there can be a huge difference!

For the first time, I understand the fear attached to being labelled.

Perhaps to no surprise, it turns out that outing yourself (to people who don’t know you well enough nor have an evolved understanding of autism) closes down the shutters of perception. It can even dictate (it seems) what is considered fair comment – the like of which I don’t think would be tolerated for any other minority group in the room. We probably occupy what is currently the last frontier in minority rights. Others will emerge, I’m sure. 

When I share as the usual art me Sonia Boué specialising in postmemory work relating to the Spanish Civil War – I feel understood. I never fail to be met with respect and often even a gratifying interest in the many layers of my practice. Hurrah! 

It is also understood that I have a track record, that I’m a professional person who has worked hard and gained significant experience in many areas of practice. So far so brilliant! 

I have always felt included and certainly never felt ‘othered’. What I now know of as privilege. 

I wish I could say that I was afforded the same respect when presenting my work as an autistic person more recently. Ableism klaxon!

With hindsight I can see that it was my fault. Doh!

I had tried to broker any misunderstanding of my practice head on. My work is implicitly autistic (because I am) but autism is not my subject, was what I went with  Keep it simple, is a motto I try to live by. 

But I had opened a crack in the door for ableist comment and aggression to pile in (unwittingly, it has to be said). 

Do I exaggerate? No, not really. 

Autistic people are subject to aggression and disrespect all the time. It’s just that I’m masking and passing usually. 

A code of practice? 

For me this has highlighted a particular need for a code of practice when sharing our work as autistic artists, which I feel moved to think about more deeply – and process a little more. 

It shouldn’t be needed and perhaps won’t be in all contexts – but until we make more progress on autism I’m for being ‘share ready’ or indeed not ready to share. I think this is about being more boundaried as individuals but also about pooling knowledge on how to highlight and protect the needs of a community of creatives that is now coming forwards. 

A great deal of what I encounter in my mentoring and consultancy practice is a gaping hole around ‘mindfulness’ where diverse neurologies intersect. I’m not talking about a buzzword version of mindfulness. I’m referring to slowing down to a speed at which we can ALL process more effectively. I ‘m talking about (where we can) controlling the parameters of our engagement. This is my ambition for my cohort. 

It is an absolute myth that good work happens at speed or that those who are quick are also more effective. 

In my minds eye I see a giant hand. The palm is out-turned, signalling stop. It is gentle but firm – not a deity but rather a traffic signal. 

I am secretly enamoured of the road sign and street paraphernalia that controls the flow of traffic. I long for tee-shirts with stop and go symbols! No entry! One way! Dead end! All beautifully simple and clear as means of communication. 

You can’t get a license to drive until you’ve learnt the Highway Code for a very good reason – you’d kill or get killed pretty quickly without it. 

I like the idea of a nice laid out set of rules for engagement. I like rules. 

My ideal beginning for sharing my practice as an autistic person would be; STOP. LOOK. LISTEN. (responses on a post-it note ONLY)

Now where have I heard that before! 

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

October 28, 2018 § 13 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This was beautiful and terrible. I felt intensely connected.

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

Giving is getting: the social ‘cure’ for autism (the power dynamics exposed).

October 12, 2018 § 16 Comments

Sonia Boué, artist performance image.

Sonia Boué – process image for a forthcoming performance piece.

I acknowledge my privilege – I am enabled to give in my art practice. How many autistics are excluded? Process image for a forthcoming performance piece. 

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Giving is getting.

Yes – I’m talking power dynamics and socially embedded disadvantage.

My thoughts flow from a series of encounters.  Most notably a comment about ‘functional’ language in autism. Neuro-normative culture misinterprets autistic expression.  It tends to frame what is considered  ‘functional’ through the lens of its own (culturally dominant) social orientation.

Dominant cultures tend to make pathology of what they perceive as ‘other’. For example, not recognising language acquisition on its own (collecting and repeating words) as functional because it seems to serve no obvious ‘social’ purpose.

Neuro-normative hegemony has it that a child of a certain age ‘should’ talk about their day, their friends, and so on.  Within this framework of understanding, building a vocabulary relating to a ‘special interest’ would probably not be considered  ‘functional’ even if it is a shared (and joyful) activity (ie between parent and child).

To the neurodivergent eye (and heart) these interactions (based on repetition) can appear intensely social. They form the back and forth of call and response. Word acquisition can be a joy in itself, which can be shared to the point of deep bonding. It’s all a case of tuning in.

But neuro-normatism (if I may call it such) doesn’t meet autistics even quarter way, and there’s a deep lack of welcome for ‘otherness’ which kicks in early.

Thinking about autism as a culture (rather than a medical diagnosis) strips back the skewed deficit models that neuro-normatism imposes on us.  It breaks my heart to think that what so many neurodivergent children experience is – simply put – a lack of welcome. All because our ‘receiving culture’ (neuro-normatism) fails recognise us as a minority culture.

But, we are far greater in number than anyone knows. I knew this the day I began to recognise my own autism because I had been party to a major historical blunder about what autism is. Figures vary greatly depending on the source, but daily ‘ordinary’ citizens are discovering their autism. This trend will continue as more of us gain access to the right kind of information.  We’ve been mislead on autism since the term was coined by Leo Kanner in 1943 to describe only the most visible members of our tribe.

A welcome – in cultural terms – is going to be increasingly important as our numbers grow.

We are many, but – even if we were not so great in number – the failure of welcome is a gross social injustice to us.

Big money can invest in gene detection and ‘cure’ (anti-welcome) but advances in thinking and understanding of autism will ultimately outstrip this kind of project, I believe. Nothing convinces me that autism (as a biologically driven social orientation) can or should be cured. To be clear, I’m not talking about co-morbid conditions, I’m talking about the core features of autism.

I know some who feel cursed by autism (due to societal cruelty) and want a ‘cure’. I respect this and mourn the lack of anything near genuine welcome in their lives, which is I believe the root cause of this negative self image. We practice a ghastly death to difference in the post-modern world with the deficit model of autism, and it’s a cause for profound grief.

But stripped back and laid bare – borrowing the language of ‘cure’ momentarily – the ‘cure’ lies in the social realm. The remedy is social progress. The ‘cure’ is welcome (genuine welcome that is), and this has everything to do with giving and getting.

You can’t welcome what you don’t perceive. A culturally dominant misinterpretation of autistic focus and communication creates a feedback loop of rejection.

There follows a process. When your natural and joyful communication is stigmatised you are barred from giving (unless you learn to conform). Those of us who learn to adapt do so at immense cost (which is unsustainable), those who can’t are quickly marginalised.

But wait, what am I doing talking about giving? Surely I should be focusing on what autistics need to be given by others?

And here we are. We are brought up on the truism that giving is receiving, but this is usually meant as a somewhat vague spiritual reward, and is rarely understood (or acknowledged) as a power dynamic.  My use of the word getting is very deliberate – it is active, whereas receiving is a passive word.

That our fundamental need to give in order to get is seldom spoken of is (at bottom) due to social lying. Neuro-normative culture sentimentalises what is in fact a vital social contract.

People who give are good, worthy, inspiring and downright decent human beings. Yes – they can be (I don’t deny this) , but people who give are in a position to do so. People who give get back untold riches – and not only of the spiritual kind.

Countless micro transactions take place on a daily basis in which invaluable commodities are exchanged. Good will is perhaps one of the most important commodities of all. In so very many contexts good will can be converted (somewhere along the line) into hard cash. Social fluency (of the dominant kind) creates the conditions for this powerful ‘alchemy’.

Without the means to wield this power autistic people can fall prey to a form of ‘social’ poverty which can create a devastating impact on a person over a lifetime, from infancy onwards, from the point at which a child’s babbling is labelled ‘not functional’.

I feel it is this anti-welcome culture which creates a deathly cycle of rejection. Some can face a lifetime of not getting.  This is not just manifest by the grand obsession with ‘curing’ us, it is articulated through every organ of the state in which autistics are deemed deficient and our communication dysfunctional.

This is a catastrophic pile-up of not ‘getting’ which can result in lives lost, lives not lived even halfway to the full, and lives lived on the margin of both economic and emotional survival.

As I write, a vast clump of anti-welcomes forms before my eyes, like a scrap metal tower teetering up into the sky. I tilt my neck, but I cannot see the top.

It sounds like an exaggeration – I wish it was. The truth is that the current neurological hegemony practices daily micro-aggressions in which autistic people are not welcomed. They’re also barred from giving in the mainstream of life.

Some of us experience just enough welcome (important to acknowledge a relative privilege) and gain the tools with which to carve a niche. But too many don’t. Every human needs a baseline of welcome, and access to the power of giving.

Giving is invaluable – a golden seam with which to make a life whole and prosperous. We all need access to the endless rounds of being there and fitting in that a neurologically sanctioned childhood brings, all of which leads to the kinds of ‘getting’ I’m talking about.

For any of this to be put right we need a revolution – and I do believe it’s coming as our understanding about autism continues to grows. At heart the measures needed are truly simple.

We need to change the language of deficit and take the focus away from a ‘cure’ for autism. We need to begin with an open armed welcome for neurological difference within the spectrum that is human culture/s.

We also need to understand that this is not a question of kindness. This is about understanding the nuts and bolts of social power. This is about giving as a right.

 

 

 

 

 

 

 

 

 

Sanctuary – finding a place of safety online #actuallyautistic

September 13, 2018 § 6 Comments

 

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Photograph taken at Magdalen Road Studios with an art piece by Cristina Renfijo.

I love this blog space. It gives me room to stretch out and explore ideas I wouldn’t otherwise express. Ideas float about and when I’m ready I draw them in and knead them into shape on these pages.

I’ve written many blogs posts since I began The Other Side, and I’m immensely grateful to all of you who’ve kept me company along the way. So many voices, so much chatter – it’s a privilege to have your ear.

I want for a moment to consider the impact of social media on my life, and perhaps this will resonate. Though equally I expect I’ll get some flack for what I’m about to say. Autistic Twitter is a wonderful thing, but there’s a toxic underbelly to the platform which infects us all and enables hostility.

Some days I mainline Twitter – it is my ‘stim’ when I’m overloaded, it’s also been a huge support to me as an autistic person and in my art practice. Though I go through periods where I lose my Twitter voice, it’s been a good way to stay connected. Currently I’m finding it hard to speak.

Since 2011 I’ve enjoyed scrolling my timeline and remember such warm early conversations about autism and art. Twitter back then was like a gentle parlour game; we remembered to thank each other for mentions and when Friday came along we’d regularly break out the #ff’s. All that feels so very long ago. So much has changed.

There are still so many lovely people out there; good friendships and lasting connections, but the other day I saw an exchange that kind of broke me. There’ve always been scraps on Twitter. Autism has forever (it seems) been bitterly contested but we seem to have crossed a line, and this one threw me. Perhaps the effect is cumulative?

Or am I now at another point in the evolution of my autistic self? I know of other ‘battle weary’ autistics. Perhaps this is a thing.

It doesn’t really matter what the ‘ding dong’ was about now that I think about it (not that I’m belittling either side of the argument). It’s more to do with the shit we give one another online when we disagree. Two autistic people pitched against each other, sparks catching as quickly as tinder as their sensitivities collided. Sudden enemies – two people I’ve followed and enjoyed hearing from.

Suddenly I felt appalled. What have we become? Why can’t we just talk things through? I know it’s all way more complex than this, but this feels toxic, pervasive, infectious.

I’ll come back to a certain kind of advocacy when I’ve figured this out, but for now I’m done. Twitter isn’t the forum it once was.

We seem to use it to bash each other over the head, and I’m just not up for that.

I want to withdraw to a place of nuance and conversation. But that’s me wanting a lot. I’ll spend less time scrolling.

This blog feels like the place to be right now. I can be quiet. I can think my own thoughts more clearly. But when I think about the need for sanctuary my heart stops.

In my minds eye, the paintings of a talented young woman, who’s found sanctuary in the UK from a war torn country, suddenly appear.

I am both pulled about by my own privilege, and afraid of repressive impulses in humans.

If you follow my art practice you’ll know that I have good reason to be.

http://www.soniaboue.co.uk

 

 

 

 

 

 

 

 

 

 

 

A Delicate Dance #masking #actuallyautistic

August 29, 2018 § 4 Comments

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Neither Use Nor Ornament research residency work by Naomi Morris. Photo by Hugh Pryor ©Hugh Pryor 2018

Photo by Hugh Pryor. Image of Naomi Morris, Neither Use Nor Ornament, Research Residency.  © Hugh Pryor, 2018

This post is a series of reflections on unmasking at work on my Arts Council England funded project, Neither Use Nor Ornament, which is a collaboration by The Museum for Object Research and WEBworks.

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Unmasking has become a hot topic for some autistics recently. In reality it is (and always has been) a daily negotiation.

What I want to say in this post is that, while (it must always be acknowledged) some of us don’t have the luxury of choice about masking, others are dancing a daily (if not hourly) delicate dance with their masks.

Some have (quite rightly I think) questioned the term masking – here meaning a survival strategy adopted by autistic people. The social carapace, role playing, performing neurotypicality, faking it – are all terms which can be used to describe what we do at any given time, mainly (in my case) unconsciously (until diagnosis that is).

And before we go any further – ‘faking it’ here goes beyond ‘normal’ usage.

One fascinating consequence of my identification as an autistic person is that I can now tell when I’m launching into social adaptations that go beyond the me I’m more comfortable with. There must be shades of masking, gradations if you will. Some late diagnosed autistic writers I’ve encountered (via blogging) write about the difficulty in knowing where the line is between the adaptations they’ve learned and the ‘authentic self’. Articulate and deeply intelligent beings they often conclude that there is no such line.

The ‘authentic self ‘as a concept is flawed. Perhaps what we can best say is that we are deeply influenced (as all other humans are) by our nurture – except that in the case of autistics the nurture has so often been the wrong fit. We want – in important ways to return to nature, to our natural selves. The problem is locating the self in an alien milieu. This search compounded by the ‘loss of self’ implied by masking (in my view).

My own experience is that second guessing what others want from you – as a blanket survival strategy – leads to immense confusion in the area of identity. I’m glad to leave this aspect of masking behind me.

That is not to say that I don’t mask – of course I do – my professional life depends on it (despite my also being ‘out’ as a professional), and in reconstructing my personal life (post diagnosis) I am often immensely grateful for the many masks in my repertoire. I am infinitely more comfortable and honest as I move through my days, and as I observe myself slip on a mask. But this doesn’t mean I have it made. I don’t.

I still get caught out. I still find certain situations overwhelming. I am still humiliated.

All I mean to do here really is observe some changes, and reflect the difficulties inherent in the actions both of masking and unmasking.

And this is pertinent to my professional life too.

Central to my work as an artist and  creative project lead is the idea of being ‘out’ as an autistic. My own creative work as such is not about autism, but I am committed to championing autistic arts professionalism (as I see it) within my sector (freelance visual arts practice). The autistic artists who currently work alongside me form part of an experimental project in which we seek to challenge preconceived notions about autistic artists. We are not savant, we are not outsiders, we are professional people doing a great job. (Unfortunately this will be news to many!)

This would seem (on the surface) to be a wholly professional matter. Except that of course it isn’t because it involves our unmasking – that delicate and infinitely unstable (because it is constantly shifting) negotiation of the self.  This is so utterly personal!

Imagine the masks we use as a cache of theatre props and costumes or a child’s dressing-up box. Imagine having to constantly judge each new situation in your day and rummage through the box for the right thing to wear. Imagine tuning in to the voices to find the right voice to use. Imagine studying the gestures to match them perfectly. Blend in, blend in – don’t show yourself as you truly are because you won’t be accepted! And all without consciously understanding what is happening or why (before diagnosis).

For some of us this process will have become entangled in our creative work. Performers especially so, I imagine.

For the artists I mentor I usually suggest tuning in to the inner voice. This is to avoid a tendency to fragment and mask in the face of outside influences. Locating a calm and loving inner voice can be a real challenge however.

This is why I’m currently loving the idea of quiet reflection – the practice of creating spaces in the day for the chatter to die down. Observe the masks, observe the self, practice with and strengthen these muscles of observation (if you can).

Recently I’ve had cause to think about this key element of the incredibly powerful and exciting Neither Use Nor Ornament  project. I can’t assume anything about where we will all be with our masking at any given moment. And that’s a wonderful dynamic to work with when you think about it. What better example of nuance in presenting autism could I dream of than the now you see us and now you don’t reality of our lives.

In writing this I realise that so much of the anxiety of unmasking is in the reception we receive – and that’s the bit we fear most because it can be dangerous (and or humiliating) for us and that is unpredictable. SO privileged am I in my unmasking today that I often forget the deep deep root of my social conditioning in the playgrounds and playing fields of school. I forget that for many autistics, especially where other minority status’ intersect, unmaking is unsafe and not an option. I plan to work much harder to remember – and to coordinate the project with this at the forefront of my mind.

If we wobble in our resolve it won’t be through cowardice – if we chose to mask in specific situations there’ll be no judgement at all.

I emerge from blogging today with a new image for the project – that of a beautiful sparkly multifaceted gem. Not all surfaces catch the light at the same time. Let this be our motto.

 

 

The art world is Social

July 5, 2018 § 7 Comments

The title for this blog post is a quote which comes from an article published by Shape Arts called How to Get an Exhibition. It’s an article “adapted to suit disabled artists and sit alongside Shape’s own resources…”

I’ll quote a fuller excerpt,

“The art world is Social and I’m capitalising that because frankly you’re not getting anywhere making art in isolation. No-one is going to come knocking if no-one knows who you are. You have got to introduce yourself (and that won’t be welcome if you’re not a decent person), which brings me to…”

This is prefaced with advice about working cooperatively. Don’t be adversarial or a ‘user’, my term. It’s a wholesome tip, what can be so wrong? Well, consider the socially disabled. Yes – we do exist – though clearly we’re invisible to even wonderful disability arts organisations which are much beloved, like Shape.

So saddened and frustrated am I to see such output from a disability arts organisation that I’m moved to blog about it.

Autistic artists are unlikely to be ‘users’ or even adversarial – though our social behaviour might make us seem so because we are so easily misread. We are more likely to be trampled on by others using our ideas and making capital out of our social vulnerabilities than vice-versa.

The art world is Social – with a capital S – is a statement which tells you everything you need to know about about an environment which is excluding, at times toxic and frankly (to borrow the author’s tone) disabling for autistic artists.

There will of course be autistic artists out there making their work in isolation – that’s the point!  It’s not necessarily a choice for us – though it is complicated.

It may be that some of us are without a network because this is what happens when you have a social disability. Another factor is that ‘isolation’ can be enabling on a creative level. Some of us don’t find collaborative working accessible and need ‘isolation’ of a certain kind to make our work. This can be usefully reframed as solitude – though our need for it can be unusual and profound.

It’s inappropriate to advise against isolation to a group who can’t help it – for whom it can be both a feature of creative life and/or a consequence of their disablement.

And not even the no-one will come knocking is the worst of this grisley finger wagging advice. Yes, we know. We’ve known this forever, thank you!

You have got to introduce yourself – gets right to the nub of things though. I’ve heard this before somewhere. The ‘get stuck in’ school of advice, which is about as useful as a kick in the teeth for those who live with levels of social anxiety often associated with social disability.

However, the worst is reserved for last.

I suspect there will be something truly sinister, about the quote marks around ‘decent person’ and the admonition about a lack of welcome, for the autistic reader. You have to unpack what this means and the assumptions buried within such a statement. ‘Decent person’ is here (I assume) someone who can perform neurological typicality (for want of a better phrase). A person who can show collaborative spirit and can demonstrate they are a team player. It means someone who can pass a neurotypical popularity test, which is essentially what most networking is about.

What if neurological challenge means you can’t remember names or faces, and can’t keep up with the alphas of this Social world. What if you can’t process interactions in the moment. The alphas shuffle according to criteria those with social disabilities often can’t fathom because they are whimsical and illogical, based on something we can’t see or touch. It is also the case that we often see too much. Where’s the advice about social ‘lying’?

Some of us can’t prove we’re ‘decent’ because the Social world disables us. So although it wasn’t intended that way, this is ableist and a worrying sign that autistic artists are still not visible in disability arts.

Autism, masking and ageing. A personal view.

July 1, 2018 § 41 Comments

 

Sonia Sketchng for Spirit of Beehive

Recently at work in my studio – exploring images of childhood in film.

This post  is about both ageing and masking. Masking can be a difficult subject as some autistics can’t mask their autism, and those of us who can often wish we didn’t have to, and yet we may depend on masking to get by. Masking overall is not really a choice though in some circumstances we can chose to unmask ourselves. We may also just be unmasked by circumstances – and this can be deeply confusing and humiliating. It is both a relative privilege and a survival strategy. Yet however important masking can be in mediating aspects of autistic challenge in neuro-normative spaces it is also pernicious in it’s effects on us.

Revealing autism and unmasking are not entirely the same thing in my view – and this is worth pointing out. One of the difficulties we face is that to talk about being autistic we must often use our masks and perform as neurotypicals. To ‘act autistic’ is another level of communication about who we are. Unmasking is a complex negotiation of self in relation to others which may need to take place over time and may never be a complete or finite entity.

Understanding and finding a balance in masking autism is a real challenge for me. I’d like to share aspects of my recent experiences. Please do feel free to comment – I’d love to know how other autistics manage this.

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There’s been a huge amount for me to process lately. SO vast is the task of navigating the world as a relatively new autistic that at times I simply buffer. Some days I’m not exactly engaging with life – I’m beach-balling like my overstuffed laptop.

Someday soon I need to empty content. It’s reached that dangerous tipping point where the cursor acts up and jiggles uncontrollably. This is a sure sign of near laptop meltdown – I should delete or transfer as much as possible to an external hard drive.

And so it is with life. I’m clearing out cupboards – in the hope of making space to think more clearly and get through my days with more ease. In the area of clothing this feels vital. Less will be more surely? Garments that have lain around for years – high on promise and low on actual wearability – must go. I look at them with new eyes. They belong pre-diagnosis when I didn’t know myself. What versions of me hang therein? None I now recognise.

I put them in a bin bag ready for donation – crossing all my fingers. May they go to a good home! May their departure lighten my load! I want to stop all this damn buffering.

Just lately I’ve been coming up against my limitations in more tangible ways. The gaps in functioning provoked by some of my recent escapades have pushed me to my limits. This has been painful – more challenge in my life means facing my invisible disabilities head on. Adjustment is constant – there is no official support for my situation.

Also – I grow old.

I’m on a species of cusp so to speak. I’m in the run up to a brave new decade, and contemporary culture demands women declare each decade the new previous decade. We’re not allowed to age visibly without dismissal.

So as women we must join the race to be younger, more energetic, and ever more positive versions of ourselves than before if we don’t want to be deleted. If you’re a late diagnosed (masked) autistic woman it’s a double whammy as we’ve been invisible all along!

I simply feel old. This is desperately unfashionable, I do know this. I should be scaling mountains and learning to yodel! This is so never going to happen, in case of doubt.

As a woman of 25 I felt ancient too (at times). Being autistic makes for vast differences in perception and sensory experience – which is often plain exhausting at any age. I must remind myself that I may not always feel quite so compromised – I will eventually find some bounce back, I usually do.

But it’s the cross over in ageing with late diagnosed autism I’m running up against. My body is slower, and the gaps in functioning feel more solid somehow. I hit the wall ever sooner. My spoons simply do just run out.

How this relates to my newfound reluctance to ‘mask’ I don’t know, but the pain and humiliation around masking is greater since my diagnosis two years ago  – I don’t want to mask anymore. Yet unmasking is not always practical or useful (let’s be honest here it’s not called privilege for nothing). I have so much left to do both creatively speaking and as a mother – all of which mean I must be out in the world.

I need a better strategy, but what?

In recent days I’ve rehearsed unmasking scenarios in my head for those brick wall moments. Unmasking on public transport for example (I now realise) requires a conversation. This is often beyond me in extremis and so I tend to push through.

At times can I barely keep my mask in place and deep sense of alienation haunts me  during and after highly stressful situations. Revealing my autism might at least bring kindness and relief, I sometimes hope. Yet the risk that I’ll be met by miscomprehension and even cruelty (however casual) is great.  Condescension, dismissal and denial are also common reactions. This is what makes masking a privilege.

It’s a negative feedback loop which can erode a person’s sense of self and self-worth, really it can.

This deep instinct to mask is brought about by fear. It’s an adaptation for social survival. So how exactly do we drop it?

Age should bring us wisdom passed down the generations.

But we’re both the lost and the pioneer generation – we have to work this out for ourselves. That’s tough – there’s no way round this.

I long to be kickass about masking, but this doesn’t really suit my personality. This would simply be another mask. As I write this I feel relief. One more pressure I can drop like a hot coal.

I want to end this post by focusing on the good stuff. We are making change happen as a community little by little.

Earlier this week I was met with the most extraordinary kindness in unmasking my autism to a new colleague – genuine dialogue can happen. Last week I also appeared on an exciting panel at Kent University, Autistic Women, Feminism and the Arts, with the most brilliant autistic women both masking and unmasked.

On an individual level for those who have masked to survive, masking, as I say in my introduction, is a daily negotiation. We shouldn’t underestimate the struggle this represents and the level of ignorance we face which often blocks us.

Campaigns to unmask ourselves are a wonderful thing, if this works for you. The potential for such dialogue to further our cause in the mainstream engenders hope in me. Such campaigns, at the very least, can rally us and strengthen us at both individual and community level. With luck it can open other minds to the challenges of being autistic via authentic voices.

But I want to say to those who may feel pressure and confusion after so very many years of masking – masking can be okay as a strategy. After a lifetime, you might not even know where masking begins and ends in your psyche. I myself am not sure about this. Habits and adaptations are etched into us over time.

Until we come up with something better masking is sometimes all we have.

Because I’m older I have to practice patience about wider change. It may not come in my lifetime but nothing will convince me that the neuro-revolution is not on its way.

 

 

 

 

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