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

October 12, 2018 § 13 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. 

————————————————————————————————————————————-

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.

 

 

 

 

 

 

 

 

 

Advertisements

Sanctuary – finding a place of safety online #actuallyautistic

September 13, 2018 § 6 Comments

 

IMG_4621

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

IMG_0192

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.

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

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 § 38 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.

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

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.

 

 

 

 

Not thinking in pictures; autism and a possible sub-diagnosis of aphantasia.

May 16, 2018 § 28 Comments

 

Fragementation 2

It’s been a curious time – one of transitions, I guess. Spring weather and lighter nights coincide with reaching beyond the 2 year anniversary of my diagnosis of autism.

A decisive diagnosis of Asperger Syndrome came as a surprise, I expected equivocation and maybes’. Hidden disability is a tricky rogue, adept at fooling even the person who embodies and lives it. A subtle form of gaslighting is our daily bread. You look fine! You seem okay! Why can’t you do that? You did it yesterday…

These are the conversations we internalise and play on repeat, looping endlessly, until diagnosis day or the day/s self-identification kicks in (either is good in my book).

From this moment you can begin to deconstruct, understanding ever more the hows and whys of the daily struggle. Sometimes we wade through treacle, and sometimes we glide like swans. Only careful unpicking reveals why (though the why is often maddeningly elusive). Finding out why is so helpful. Finding out why (I find) often requires a group conversation. This can be quite random for an autistic person – a process of sifting and happening on rare pieces of gold.

But these golden nuggets can be just what we need to rub the looping critical internalised voices from our minds. Yesterday I learned about aphantasia  from autistic blogger and researcher Shona Davis. Aphantasia relates to the inability to visualise images. I’m still wrestling with the concept and am uncertain that it applies to me wholly, but suspect that at least partially it probably does . I often find that peeling back sensory and/or neurological difference is cloudy at first, my kind of ‘normal’ is long lived and late diagnosis can feel like playing a game of tag with yourself. I’m also a little hung up on how literally to take ‘seeing’ pictures in the mind as an expression, let alone arrive at a whole new diagnosis just like that. But it sounds like an important thing to know about yourself when so many areas of life can be affected.

Okay aphantasia is not well known or researched, but I find myself reflecting in new ways on how poor information and services are for autistic people, how little attention is given to the detail of our diagnosis. There can be so many strands to each individual presentation of autism. Not only should we as a society embrace that fact instead of chasing tired old stereotypes about autism, we autistics should also receive commensurate support.

Aphantasia could provide the key to so much understanding of the many ways in which I struggle to learn and retain information, recognise people and keep them in mind when they are absent. It could also relate to the intense need to see and touch things to understand them, and to learn hands-on rather than in the abstract.

I also feel I’ve reached a tipping point after diagnosis in which I must begin to reconstruct my life. There comes a point where all the carefully garnered information about autism and reinterpretations of my decades on the earth should lead somewhere – to forming new helpful habits and adaptations I hope.

As I drifted off to sleep last night I tried to conjure a scene. Useless. See a yellow bucket, I said to my sleepy imagination. Imagination said no.

If I screw my eyes and dig back into word association fleetingly I get something – a picture book bucket. I find a black bucket easier to conjure (builder’s buckets are a stronger image – more familiar probably – but slippery as sand in my mind’s eye). I don’t get nothing at all but what I get is faint and has that rolodex quality which facial recognition also contains for me. I get there by association. I don’t see black (as some report) and I don’t see words either. Perhaps what I see is something in-between?

The more familiar an object is the more clearly I see it but it quickly skips away. I can see my fantasies (I can see pieces of art I’ve made or imagined pieces) but I can’t seem to conjure images to command. There are also powerful visual experiences which stay with me that I can’t easily rub out so I feel this form of seeing for me may be deeply linked to emotional engagement at the time of seeing (if that makes sense).

I reflect again how poorly I understood the variety within our autisms when I read Temple Grandin’s incredible book, Thinking in Pictures, so many years ago, desperate to understand my newly diagnosed child. I can now see that fascinating as it was it didn’t help me all that much. They don’t think in pictures either – though obviously some autistics do, while others of us can’t conjure a single mental image.

My work as a visual artist is curious when you consider that I don’t have this ability firmly embedded in my neurology, and that my visual acuity is otherwise high. I’m incredibly visually sensitive (sometimes this is painful) and this guides me in my work. Probably, as in so many other ways, I’m just navigating differently.

Yesterday I took a picture of a broken plastic magnetic letter while out walking (a new habit). It is orange, the magnet is missing and it lies frontside down. I can see it clearly in my mind and this image is stable. Is this because it struck me so? Is it because I took a photo, and then spent time editing it on instagram? Is it because I love orange? Or is it because it is the letter which begins all the names of the men closest to me?

In recalling it just now before adding the image I had forgotten that it was broken or that it had a small blossom resting on it. Otherwise my visual memory was strong.

I think the truth may be that when it comes to detail and specifics, when there is time to embed an image (as in the creative process) and when the emotional pull is strong enough  I can visualise an object. Visualising a whole scene, or something in the abstract is something else entirely.

Somehow knowing this  feels like a huge step in rebuilding my life.

IMG_4242

 

 

 

 

 

 

Portal: disabling bureaucracy #ActuallyAutistic

May 6, 2018 § Leave a comment

 

Portal 10I don’t want to write too many words. I’d like my video to speak for itself. Mainly, I need Arts Council England to know that their bureaucratic processes, in current form, disable significant groups of autistic and neurodivergent artists.

This is a specific issue in my life – but I also want to make a more general point that bureaucracy physically hurts us.

I know autistics who succeed in making Arts Council applications – I also know many who are unable to contemplate beginning one. The argument often goes that “neurotypical” artists struggle with it too. Albeit true, (in the sense that it is a gruelling process of competition for limited resources which also requires ‘insider information’ to succeed) it is also an ableist thing to say because it minimises exactly how uneven the playing ground is for us as a group. Just because some of us push through doesn’t mean it is okay. The bar is high – but the bar is also structurally unfair.

I want also to say that those of us who do take on the beast can be harmed in the process. I think this is disabling.

I think the Arts Council should know.

%d bloggers like this: