Kate Fox and Rhiannon Lloyd-Williams at the Autism Arts Festival 2019. 

‘The time has come,’ the Walrus said,
To talk of many things:
Of shoes — and ships — and sealing-wax —
Of cabbages — and kings —
And why the sea is boiling hot —
And whether pigs have wings.’

The Walrus and the Carpenter by Lewis Carroll.


The time has come to talk of the magnificent autistic-led Autism Arts Festival (AAF) 2019, organised by Shaun May and hosted at the University of Kent (26-28 March).

Except, to paraphrase part of my own contribution to the Festival (a sound piece featuring a play within a play for the WEBs exhibition),

Finally my moment to speak has come… but now that you’re all listening I’m a little tongue tied! 

What can you say about a cultural moment – understanding the significance of which is of the moment, and also of the people (by which I mean the attendees and participants who are autistic).

How to convey the magnitude of this seismic event without resorting to a mere list – which won’t cut it – or by means of comparison to other moments and experiences which I can’t speak to with any hope of accuracy?

My difficulty echoes autistic communication challenges across whole lifetimes, and of the ‘double empathy problem’ between autistics and non-autistics – individually and in groups (by which I mean communities). I’m realising anew (I also found this during my ACE research for the Museum of Object Research project in 2017), that, although we obviously do use a common language across neuro-types, we simply don’t refer to the same lived experience with our shared language. Too often nuance is lost and the the risk of miscommunication is constant. This matters also because language is used to ‘other’ and dismiss our lived experience. Our lingua franca serves to trick us into thinking we are communicating about the same things when we’re really not –  it’s the vehicle of our cross-neurological double empathy problem.

How language and people can do this is beyond the scope of this post, but it’s worth pointing out that language is a double edged sword for us in many senses. The nuance of autistic lived experience is both made invisible (the countless attempts to minimise our challenges as common ground – the endless, yeah I do/have that too), and yet it is also used to expose and denigrate us as being ‘other’ (outside the ‘norm’). We are both ostracised – held at at ceremonial distance – and our needs devalued or ignored in the mainstream. I therefore hesitate in my trust in language to convey what the AFF signified to me, and how I do feel it marks a moment on the cultural landscape, which should have Arts Council England (the funders) and other major arts organisations paying sharp attention.

The easiest shortcut I can find to describe the importance of Shaun May’s project in producing AFF, is to say that for this participant my two days AFF was what I imagine life in the ‘mainstream’ to be for neurotypicals.

Yes, we were the mainstream (to borrow an ugly phrase), due to sheer number of autistic bodies present, not to mention the predominant (not say exclusively) autistic cultural offer. Autism was made visible not only by our presence on campus (and we are a divergent divergence whatever that means but I don’t mean we ‘looked autistic’ fgs ) but also by the tangible signposting of, and accommodations for, the sensory world at every turn. The sensory  battleground for the out-and-about autistic was mediated at every turn (again) by Shaun and his team – including a natty welcome pack with communication stickers, earplugs and local taxi information. We followed a blue line back and forth to and from the various buildings on campus where a multiplicity of events were taking place, often simultaneously.

Dizzying it was, in all respects, but this was all to the good. After processing a sense of overwhelm and my inability to access the sheer number of events (of course I couldn’t, you never can) – I ended up feeling that as in any festival, unlike Pokemon, you don’t have to catch ’em all!  

Being extraordinarily generous in creating platforms for so many artists and speakers, and in not patronising attendees with a festival lite, Shaun created a very full offer with the scaffolding in place to access the bits one chose. I’m unable to decode almost any menu so I did find the Festival schedule bewildering, but the scaffolding was in place to allow things to happen and unfold by chance (often my default) just by being there and being included by the sheer thought given to the welcome.

I rely on people, and there were many on hand. This was a supremely well staffed event, with helpful and informed front of house people ready to assist at all times. Emerging disorientated and with a thumping headache from one event (two days into the festival I was getting quite overloaded)  I thought I’d lost my favourite hat which is generally welded to my head until Spring but had come lose (losing things was a bit of theme and I had also just almost lost my phone). Things were unraveling.

A front of house person scooped me up, soothed me, and helped me find my hat by the magic of calmness and kindness. Yes, kindness was the order of the day, and importantly I wasn’t made to feel foolish. AFF festival goers overwhelm had been factored in – my temporary distress was anticipated and I knew I was not alone as from the corner of my eye I witnessed others ‘bunking out’ of events when needed with reassuring regularity. Indeed doors clattered with frequency as Festival goers took care of their sensory needs – alleluia, a thousand trapped and claustrophobic schooldays countered!

An unending delight was the way in which my online life became manifest as I walked the blue line and pit-stopped (endlessly it seemed) on the elegant checked sofa in Cafe Nero. Twitter friends and acquaintances appeared  at my side with a frequency I could not have ever imagined possible. I suddenly twigged that this might be the equivalent to ‘ordinary life’ for many neurotypicals.  We did socialising of the most natural and pleasing variety.  I loved that at one point so many of us had gathered at the sofa that one of us declared, ah the gang’s all here! A phrase one would not expect to hear uttered by an autistic person.

I repeated (as though in a dream), to whoever would listen, that the AAF was like all the school and university days I’d never had. This must be what it’s like to be neurotypical. This was how it was supposed to be!

For me it was the women I met (some already known to me and some new) who made this conference for me – so you could say that it was the extracurricular moments which stood out, which says absolutely nothing negative about the ‘curriculum’ by the way – it is just that the experience of being a majority and finding myself so connected and reflected was quite mind-blowing. It was also these women’s events which spoke to me deeply and have stayed with me, unsurprising when you consider the main autism focused cultural offer by the so-called mainstream is the male/savant/geek stereotype. Not that I want to risk falling into the trap of  gender binaries – just to relay where I found myself reflected and how starved of this necessity I’ve been.

There was also something quite meta at play, I now realise. In the delightful yet serious game of self-identification with the group, there also exists the teasing possibility of intuiting what autistic culture/s might be collectively speaking. Not wishing to be divisive, or pin down a beautiful butterfly, it matters greatly to know this and to be able to articulate it. Yet it is a very tricky area precisely because of the double empathy problem. Shaun’s work on the AAF will aid this area of study and looks set to continue this vital contribution with further festivals.

Festival highlights for me were catching a superb reading from Jae Scott’s short play Vinnie, Kate Fox’s magisterial stand-up set, and Rhiannon’Lloyd-Willaims hour long poetry reading which included a passage from her play The Duck (swoon). I adored meeting Laura James and hearing her in conversation with the inimitable Katherine May.  Despite leaving the Festival on a cloud I wanted more.

It was an enormous pleasure to see the WEBworks group show – of which I was part – beautifully installed in Gallery Studio 3. Full credit to Susan Kruse for her sensory design of the space, huge thanks to curator Eleen Deprez  and congratulations to all the artists! You’re all incredible.

It was lovely to spend downtime with Jon Adams and hear him talk about his practice as part of our professional development workshop for visual arts.  I was very sorry to miss Jon’s Cat Researchers presentation but I have enjoyed the Tweets immensely.

I can’t end my post without reference to Joanne Limburg who arrived bearing gifts. I’m now proud owner of The Autistic Alice! Once or twice we commented that we were Through the Looking Glass, or in Wonderland, and Joanne inspired me to begin my post with Lewis Carroll.

There are so many other names I could mention who made my festival for me – basically everyone I spoke to and spent time with.

I want to end where I began, with Lewis Carroll. I feel a huge thank you is owed to Shaun May – I don’t know how you did it. Due to your incredible vision, for three days pigs really did have wings!


Sonia Boué