(This photograph was taken during my commission by Aidan Moesby for the Thresholds Online Exhibition at MIMA, but doesn’t form part of the final selection for my photographic series Safe as Houses.)
How does it feel to be an artist who’s output is misunderstood and therefore mis-framed and often overlooked in mainstream arts?
I’m certain autistic artists are not alone in feeling this. The so-called mainstream is a highly competitive, not to say fickle, world. There are trends and any artist can feel marginalised by falling outside current directions. Relevance can be a hugely problematic criteria for selection, for instance, but my blog post isn’t about this.
My post has nothing to do with sour grapes either, though the above image was recently ‘not selected’ for an open call. I never thought it would be. I’m more than aware that the autistic rapture contained within it quite possibly doesn’t translate. The vastness of space I discern in such a close shot may well not register in minds that don’t share my sensory world. So be it.
Yesterday someone told me that statistics are increasingly showing the prevalence of autistic people is nothing like what was thought, and that a recent presentation from the University of Birmingham quoted 1 in 54 in 2020.
I expect at some future point in time generations will look back at our ignorance in wonder, yet autistic people must and do live now.
This takes me back to my initial question about swimming against a perceptual tide. A phenomenon which places a significant number of us at great disadvantage not only because we face so many socially embedded barriers, but because our art (and what it signifies to us) is invisible. This may be simply expressed as ‘not cool’ or ‘edgy’ as understood in neurotypical culture.
This is frustrating and soul destroying. Often we’re expected to be savants, outsider artists or in need of art therapy. Sometimes we’re consumed for our exoticism; our AMAZING perceptual words glamorised for neurotypical tastes. To be seen we must bare our psyches or be exceptional and inspiring. We can be forgiven for suspecting that if we don’t tick any of the above boxes we better just disappear. If we can’t thrill you we’re not worth the attention span, sort of thing.
In my sector support work I meet a lot of autistics and other neurodivergent creatives. I’m hearing from arts organisations that neurodivergent artists are forming 50-80% of those seeking professional support offered through programmes and mentoring schemes.
Progress in our understanding of autism and neurodivergence at the level of lived experience is allowing us to identify ourselves in ever greater number. At grass roots level this is a literal tidal wave. My inbox is stuffed with enquires, and daily I encounter more creatives who’s profiles are multifariously atypical.
Progress in the sector feels slow when you’re at the coal face. It feels especially slow for the late diagnosed creatives who’ve been held back for a lifetime, and are only just finding their way. We may seem old (and thus irrelevant to some ) but we are young diagnostically speaking.
We’re also tired of not seeing ourselves reflected and of being overlooked because we can’t be seen.
I’ve long sat on the fence about whether our cultural output is distinct, because we are yet to be adequately surveyed or critiqued by those who know what they’re looking at. But this is much needed and our work is currently not being framed as usefully to us as it could be, in my view. We are not freaks, amateurs, or outsiders to ourselves. Conversely neurotypical culture quite often feels irrelevant, and not interesting to US. I feel such insights should be the starting point for vital conversations across neuro-types.
My considered feeling is that the sector needs to catch up before we face another major crisis of conscience about the damage done to a minority group. We’re an emergent culture facing huge challenges in organising concertedly, but the evidence about our lived experience and our growing numbers is compelling. There’s simply no excuse for sector thinking not to be ahead of the curve.
Yes, we have reached sector consciousness to an extent, but a sector which focuses on helping us fit the current professional mould is of limited value to us. What we need is opportunity shaped in our own image, and for that we need radical perceptual change.
(First published on The Other Side)
This post is about the sheer emotional labour of managing neurotypicals’ cognitive styles and preferences. This is heightened when autistics find themselves in a minority of one in almost any situation where our own cognitive styles and preferences are not yet understood. It is a serious issue due to the ongoing trauma of cultural suppression of autistic perception and sensibilities.
I rarely look back at old blog posts, so I may have written about this before. I feel I can’t be blamed for repeating myself, as it really doesn’t matter how many times we articulate our lived experiences we will always find ourselves outnumbered and misunderstood at some (usually unexpected) moment. It’s long been my belief that autism and so-called neurotypicality are like mirror worlds, sometimes a literal horror hall of distorted glass. We see each other’s faults and ‘superpowers’ through the lenses of often polar opposite lived experiences. For example, I am sometimes quite appalled at neurotypical behaviour, but rarely feel empowered or emboldened enough to say this out loud. This does not stop me believing in the inherent goodness of the majority of neurotypical humans. I just wish they could look outside their own experience as autistics are forced to do all the time.
I’m sure that many other humans belonging to minority groups will feel acutely the issue of number bearing down on them in their daily lives. Oppressions come in many forms when a majority culture doesn’t fit you or even attempt to fit you in. But autism is a singular disability and a unique difference – the ability to decode non autistic human behaviour is variable among us. Our social antenna are not the same. This makes us not lesser or greater, but it means that those of us who learn to get by to some degree in neurotypical spaces are probably relying on years of practice and an archive of memories. Our presence among you when we’re ‘passing’ is hard won. The battleground on which our skill has been honed is beyond painful. I need to tell you now that I bear the deepest of wounds to be so fluent in your company. When I transgress your norms it is quite possible that you have also transgressed mine. The injustice of this situation goes beyond simple annoyance.
When I acknowledge this truth my ‘resilience’ astounds me. The ability of autistic people to survive the emotional harms of (what I’m sure are unwitting) neurotypical oppressions is astonishing – though of course many of us don’t make it.
The influence of this majority culture can be so overwhelming and our enforced passing so habitual that navigating neurotypical spaces contains inherent risk for those who venture there. You never know when an emotional booby trap will plunge you downwards, or when the next psychological landmine will blow. Days can be lost in recovery. The blow is always familiar, you reel with incomprehension and lick your wound. Some time later comes the work of analysing events and rebuilding your inherent right to be alive.
Anyone living with trauma will recognise this process. It is visceral fight or flight territory. Cortisol surges wildly. The barbs are electric. We are always wrong until we can right ourselves again. If it sounds exhausting and a little dangerous, it is.
Passing for any group will always be fraught. Passing is an enforced state, a perilous training in avoiding bullying and worse. I would not have survived my secondary school (now demolished, thank god) without extreme passing/ code switching and other wildly self-injurious strategies.
I don’t want your pity, what I want is consideration. But what I know is that to get anywhere close to this I must lay myself bare, which represents more emotional labour.
Looking back over recent times I realise that I’ve found myself in a lot of new situations where I’ve had to work out what’s expected of me. This can take autistics a lot longer. One survival strategy is to observe, pick up clues, and seek the patterns. This comes so naturally to me I don’t even know I’m doing it. What I feel is anxiety, I know I don’t yet know what the dynamics in the room mean. They’re all fuzzy interference until I’ve observed them for long enough. The pressure to pass before this process is complete is almost intolerable. I can feel at my most klutzy.
With all this pressure to pass – usually as the lone autistic – I’ve been forgetting myself. I’ve been skirting round the booby traps and feeling almost immune. Passing confers great privileges. It can really take the edge off util it’s payback time.
So I write with a renewed sense of my identity as an autistic person who doesn’t want to spend her life passing, which is a bitter sweet moment. There’s a real rub to it, which is that ‘feeling more autistic’ is often a result of being more disabled. But until more progress is made in the wider world, anything else is a mirage.
The emotional labour involved in navigating non-autistic spaces has a huge impact on our life chances and our mental and physical health. We need to start building more honest bridges between us NOW.
What is good about my renewed sensitivity is that it will make me a better advocate, a role I’ve missed. It also prompts me to seek autistic spaces for new ventures. I’m tired of being the lone autistic in the room.
A recent collage exploring identity and the environment.
What a year to become an A-N Board Member!
As I look back over a year of Board Meetings and pre-lockdown events I’m beginning to understand the purpose of my being at the A-N Board table. For neurodivergents this kind of processing can take longer for many neurological/socially determined reasons. It’s been an honour with a huge learning curve for an autistic self-taught artist/advocate. I’m grass roots from head to toe so I will be honest, it’s been a big step up for me. It goes without saying that it’s a very different matter to log on to A-N as a member from taking responsibility for upholding the vision of the organisation. Needless to say, this process has also taken place with added pandemic, which saw our CEO Julie Lomax in lockdown in Australia for several months. Julie’s mentorship of my process has been essential to the penny drop of my Board Member role, and she hasn’t missed a beat.
Our Board meetings have transmogrified from Toynbee Studios to Zoom, and the habitual journey into London from Oxford has melted away. The rush to meet my fellow Board Members for coffee and sandwiches ahead of our meetings is a distant memory. Far stronger is my impression of inviting them into my carefully curated Zoom room where all my home comforts are a step away. The sensory relief is extraordinary, and the multimodal communication facilitated by Zoom has been a revelation. An unforeseen effect of the pandemic measures is that I can be more present and effective in meetings. Who knew that this was even possible? It’s only when the agony of sensory assault is absent that you can gauge its toll.
This won’t be a long blog post, but I did want to check in with my thoughts. In between meetings I’m a quiet Board Member, quieter still as I’ve modified my online interactions recently. The pandemic makes you sort your priorities, doesn’t it? I’m thinking more carefully about what I post and what I want to invite into my home via my screen.
This year is also A-N’s 40th anniversary and I’m now more conscious than ever of how each member makes history when we post our content on the A-N site. In these most challenging times A-N remains a constant voice putting artists first, and I’m especially proud to have been granted tenure at this moment. Watch out for our 40th anniversary content and the Artists Council’s Artists Make Change project for uplift. Artists matter is our mantra.
So what do I bring to the Board? What is the point of me? Increasingly I feel the point is simply to be me, by which I mean the unmasked version of myself. Ironically, this has been made more possible by remote working because I’m able to be more effective while freed from the burden of sensory stress. I feel my job is to be authentic in all my communications and speak and write this truth about sensory need, as I am now doing, for the sake of change in the present and for historic record too. I’ve come to treasure our Board Meetings. It is an extraordinary Board and our conversations feel vital and enriching. As I said, it’s an honour and it’s also a joy.
Of course I can’t represent all neurodivergent artists – that’s not the point of my position – but I’d love to hear from more of you about what matters to you. I’m also here to be a voice in A-N’s ear.
You can contact me via tweet or Twitter DM @SoniaBoue
I love an epiphany!
God, being autistic is sometimes an absolute blast. I get to peel back layers of a life time’s accumulation of faulty learning and go, wow! so that’s how it really works…
Recent adventures have got me thinking about ‘social disability’ as an important addition to the terms I can use to help articulate accommodation needs. This could be a sensitive term for some, so here comes the bit where I make the usual disclaimers. As ever in my writing I only speak for myself, and please remember that when you’ve met one autistic you’ve only ever met one autistic.
The point is (however) that each autistic has to work things out for themselves. We mainly have no such thing as aftercare following an autism diagnosis. I’ve been through many a recalibration of my identity since my official diagnosis in March 2016, but my love for the word autism has never wained. I was luke warm on the term neurodivergent for the longest time, but have recently cosied right up to it – it’s so useful and brings much needed solidarity with a wider group. I’ve got a lot of affection for the term invisible disability, but rarely remember to use it (note to self to do more of this). But in almost mint condition is my sudden mental adoption of the term ‘social disability’ which I’m test-driving here. I’m excited by it mainly because I feel the need for clarity and specificity. This is about refining and recalibrating where I am 4 years on from my diagnosis and readying myself to meet new challenges.
It’s taken 4 years for me to absorb that I can never fully compensate for my autism with workarounds, accommodations and self-care. There’s no magic neurological catch-up or compensation that can level out the playing field (ergo it’s the playing field that needs to change, by the way!) I HAVE A NEUROLOGICAL CONDITION ( which affects me in many ways) as well as an identity to forge – and for me the two must go hand in hand.
The penny has finally dropped. It doesn’t matter how much learning I do, or how much I am accommodated, I will remain at core disabled by my hyper intuitive and sometimes scrambled navigational systems. This insight, by the way, does nothing to negate my autism positive position – I see autism as both disability and identity, and find no conflict in this position.
I feel great joy at being me, I love myself and my autism quite fully, right up to the brim in fact. But I will forever spend my days in hostile environments following norms I can’t ever hope to understand. I will always need to use my native intellect and find the will to be assertive and seek adjustments, but I need more than this. I NEED IT TO BE UNDERSTOOD THAT I AM RADICALLY SOCIALLY DIFFERENT – AND THAT I DON’T WANT SUPPORT TO APE YOU OR OPERATE LIKE YOU (if you are a non-autistic reader). This is not rudeness on my part, I’m talking about neurologically based social orientations and needs.
I do a lot of writing, thinking and advocating about autism and the arts, and I encounter a lot of artists who are autistic and struggle with the question of how to place themselves in their professional lives, and in the art world as a whole. There is no such category as ‘autistic artist’ that would fit us all – as stated above, once you’ve met one of us you’ve only ever met one of us. So what kind of beastie are we, and where do we fit, if at all? What does it mean to be an autistic artist?
We return to the conundrum of extreme diversity within divergence, but I believe we can perhaps haul some commonalities out of the possibly infinite variety of minds, though of course I can only truly speak for myself.
A social difference that’s disabling and is life long means the building blocks of learning have been (and will continue to be) different. THIS DOESN’T GO AWAY. Our thinking can run so counter to the non-autistic that we can feel alien even when we appear to be joining in and on side. We’re conditioned to mask our difference and often don’t know how to drop this adaptation. We can also find many points of joyful and genuine connection, but it takes colossal effort on our part to ‘make it’ into the room. Once there, we may well have no idea how to network and ‘makes things happen’. We can learn some of your tricks though kindness and information sharing, but THIS TOO DOESN’T GO AWAY.
So what’s my vision, and what does focusing on the term ‘social disability’ gain? I feel this would be suitably radical and risky. Talking about social disability is usefully uncomfortable and revealing. We reward neuro-normative sociability with popularity and power and we judge those who can’t perform it. In doing so we must sometimes confuse neurology with personality – neither should be judged, but disability is a protected characteristic and requires positive action.
Accommodations are vital, but so is culture shift. Please understand that I don’t want a leg- up to join the ranks, I want to break the current neuro-normative socially biased mould. I feel social disability as a term enables me to pinpoint a very particular aspect of my struggle as an autistic artist. At the forefront of articulating and carving out autistic space and power is where I want to be.