Our artistic director, Jon Adams, wrote and presented this paper at the Interdisciplinary Autism Research Festival (IARF) in May 2021
So the question is ‘can autistic artists or creatives influence autism research yet remain authentic to the research, their lived experience, conscience and creative narratives. Oh, and why are there crows in the fields of autism?
We all recognise that research can influence or inspire creativity and vice-versa. Artists over the centuries it seems have long been interested in sciences as raw material for their work. Even now there is a whole creative genera based around engagement with science and scientists. Artists in residence with researchers or at scientific establishments have long been a stable of this ‘Arts and Science’ movement. Researchers may also have a vested interest in working with artists, either to make the work visual, publishable and understandable to a lay reader or to satisfy the ‘public engagement’ agenda now becoming more common as a grant requirement. But by their very often contrary and non conformist nature, an Artist may choose to ‘reveal the research’ in both a figurative and explanatory way or through a more metaphoric or abstract concept.
But what about if the science engaged Artist initiates or influences the research in an iterative way? How does this model of working benefit both parties and the wider research or creative landscapes? Can the Artist be seen as peer or equal in a research project with both fields becoming scientifically and creatively authentic, seen as more than coproduction and public engagement? And how does this differ with autistic creatives and them reconciling their lived experience with the direction, funding bias or seemingly misinformed content of some ‘autism research’.
Now I've alway been interested in the natural sciences and it seems born with a terminal curiosity about the world around me, below me and above me. Some times this intense interest was there to save me, sometimes fed to distract from many abusive school situations. It also countered the extreme loneliness of childhood differences or to prove that I could ‘learn’ and show I was knowledgeable or talk about something to counter peoples misinterpretations of my silences. In all this time I've never quite worked out if I'm a scientist who likes drawing or an artist who loves science. In fact, can you be both without compromising, favouring of failing at one or the other?
I never went to art college due to the dinosaurs at primary school hunting down and ripping through my confidences so I turned to my other love which was past life and geological time. I remember looking at the Welsh landscape near Llangollen on holiday, probably aged 5 or 6 and my first instinct wasn't to paint ‘the view’ but explore and on picking up my first odd shaped stone in a canal side quarry my first question was simply to ask why? Blimey, that's a lot of firsts!
My parents were also a big influence on my arts and science inclinations and direction. Dad imbued me with a love of photography, horticulture, chemistry and cosmology. Mum the figurative arts, writing and later social engagement. It's strange, we always seemed to go on holiday ‘somewhere interesting’: The Lake District, the Lizard in Cornwall, Malta or the Norfolk Broads. At school I was simply taught ‘to fear’ but between the exams in ‘pain and terror’ and the compulsory sociability horror of house guests or extended family friends there was always the balm of hill-walks or museums, sewing or gardening, telescopes or cameras. Ironically I read a lot for a dyslexic, teaching myself to read through the medium of ‘war comic books’ then while my friends were buying Beano or Jackie I had multi-part encyclopaedias delivered to devour under the bedcovers by torchlight and the more pictures or cut away illustrations the better. I took everything in ‘in case it was useful’ and found joy in the patterns that streamed out from the pages connecting it all together. This sounds great but I was also being exceptionally damaged by my interactions with others, school and I soon found out people didn't tell the truth ‘all the time’ or ‘mean what they said nor said what they mean’. All these lessons have I feel set me up for life one way or another.
I went to university and being regarded as eccentric seemingly fitted, which helped cover up some gaps and I managed my way through the social side mostly through camouflage, bluff and hiding in plain sight. On completion I was set to become a ‘researcher’ complete with offers of a PhD but again people intruded and I was forced to switch direction back to the arts and my creativity. For the next 25 years I drew ‘other peoples pictures’ but the science and general knowledge I'd ‘collected’ along the way was invaluable in finding a niche market for my illustration. Being different though held me back and narrowed the ways I could live, work and ultimately exist in a world that seemingly valued difference but not people being different.
So why or did I stop a successful illustration career? Well I reached the camo-burnout point where to remain masked would probably have cost me my life. Then in late 1999 I found some taxonomy I could accept for my differences. Dyslexia came first, then synaesthesia and latterly autism so I could start to peel off the masks one by one but all that came at the cost of crises.
On discovering my dyslexia I was compelled to write poetry, I had rebelled against something I was told at school, that I just shouldn't as I was useless with words. I also started making artwork for me about what I wanted and not what I was told to do or go where I was told I should fit. All in all I became a human non-conformity. Soon I was a finalist in an international poetry competition and the then poet laureate who had helped choose my work told me to ‘never to stop writing’ but wider poor attitudes and my seared mental health issues made self-acceptance hard. One day in my growing anger and frustration I nailed a book to a wall. It was seen accidentally at a crit-group and an opportunity arose with a contemporary arts residency in an art school attached to a university and I took it. When it finished the university supported me to apply for funding to keep me on. It worked and I was soon given the title of research fellow (by practice) winning a peer reviewed Leverhulme Trust, self directed artist in residency in the faculty of technology and firstly found myself drawn to the ‘Institute for cosmology and gravitation’.
I can't say that I influenced anything they did scientifically as that was way above me, especially the maths, but I made sound and graphics laced with humour and metaphor that was I believe appreciated. The sound I made from ‘supernova imagery’ was shown at several different galleries and exhibitions even in the Tate Turbine Hall and I started to see a future, a belonging in arts science creative work.
About this time It had been suggested I was autistic whilst I was teaching art and memory strategy to young homeless dyslexic people. I looked into it and self diagnosed but didn't think anything of it as obtaining a formal DX seemed impossible. However I felt it ‘part of me’ so I mentioned it at a talk about an upcoming commission to map peoples experiences of the Cultural Olympiad in geological metaphor. The attending CEO of the leading arts science organisation in the U.K. asked me if I'd do a talk for them which was an offer that literally changed my life. I said yes rashly and found myself a year later on stage at Cheltenham Science Festival alongside another autistic artist, Gabriel (with Ben Conners) and Sir Simon Baron Cohen. I spoke about creativity, patterns, nature, metaphor, synaesthesia, water with empathy for autistic young peoples futures.
A Wellcome Trust representative attending & hearing me talk suggested afterwards I carry this further and SBC agreed to see me to chat about possibility. Naively I pitched a project to disprove one particular ‘autism stereotype’ that bugged me which was ‘we don't see the bigger picture only get lost in the detail’ and he agreed saying a priority of his was researchers meeting an autistic person outside of the traditional relationship of ‘study subject or patient’. In fact some had never I believe met an autistic person before let alone talked ‘breakfasts’ with them. I was taken under the wing of ‘The Arts Catalyst’ who supported me with a Wellcome Trust application as ‘artist in residency’ at the Autism Research Centre (within Cambridge University). I had read enough autism research by then to realise that either I wasn't autistic as I didn't fit the oft ‘listed cants’’ or there was something seriously wrong with autism research. So was this experience going to provide me with the raw material to make and symbiotically change some researchers points of view. Actually it did both in a few ways, the artwork had impact and one researcher also told me I'd changed their views on autistic people and they looked into synaesthesia prevalence in autism after a question I asked. but more importantly I was introduced to other autism researchers and to playing (but not being told what to play with) in the ‘fields of autism research’. Thrown in at a pretty deep end you may say and I may add I never met a single autistic mouse in my time there either but I did walk away with my official DX, further opportunity and a compulsion for advocating for change.
Unfortunately before this time I had a near death experience and succumbed to PTSD. Although life became very difficult, because I was not DX’d as autistic and the cause fitted the DSM I was treated reasonably well. This actually set me up to compare and recognise trauma later on which was subsequently blamed on my autism alone which I then fed into research both as a creative and autistic person. There are correlations between the arts and research, most of the time we have ‘things done to us not with us’ without our input or asking. Through the fog I saw the need for more autistic people to be involved, respected and recognised as rightful owners of the autistic narrative in both the arts and autism research.
My trauma continued after DX through ongoing bulling and fighting with Mental Health services for recognition, I fed my experiences into some researchers work as many autistic people were suffering the same it seems.
I also worked on creative Commissions for Parliament, Frequency festival and an autobiographic performance piece for Venice Biennale involving PTSD. I thought there were the buds of change happening within autism research and supported an organisation, and people I felt professing to respect the autistic voice in research authenticity. I was deeply mistaken, vulnerable and feel i was harmed again only this time to the point of suicidality without any closure or support for my mental health. Ironically I feed this experience into current autism research on mental health, suicide in autism both figuratively, literally and creatively.
For me staying alive is the ultimate act of defiance.
I’m going to just leap forward to mention briefly the sartorial and heretical ‘Cat researchers’ twitter site and performances plus ‘Changing the face of autism research’ which was a Wellcome Trust funded project led by a researcher at KCL. I was recommended and brought on board simply as a sound person at first to record interviews with researchers themed around involving autistic people in autism research. Actually I also ended up advising and writing the questions as well as conducting the conversations from an autistic point of view so change for me was an inevitable aim. I believe the project has made an impact on the interviewees including IFL language and I’ve been asked by some of them to collaborate further, one has even renounced ‘mouse models’.
It also led to ‘Flow unlocked’ which I'm hoping will be a model or waypoint and catalyst for further creative collaboration between ‘born again’ researchers and autists. For me it spawned the infamous ‘Covid corvids’ but I'm happy to say no mice or marbles were harmed, collected or buried in this project either.
Joking aside I feel there are some very serious issues with autism research that ‘aims too’ cure or fix autistic people, seemingly taking ideological and funding ‘presidency and preference’ and resultant projects where people have I feel been seriously harmed and the complicity, compliance or reluctance of some researchers to speak out about obvious wrongdoing. But there are also some excellent allies and thru the visibility of the arts, social pressure can be put on the seemingly systemic oppression, silencing and appropriation of the autistic narrative. We must not diminish the power of the arts to initiate irrevocable change, one author, with one book in Victorian times ultimately stopped children being exploited as chimney sweeps.
So should autistic creatives be involved in autism research?
Maybe an autistic creative in every project?
Hell yes - Most autistic people I've met interested in research shifts are loyal, warm, kind, selfless, emotive and just wish to become a fulfilled and engaged part of society not set apart from society. A sense of belonging is possibly our most fundamental need and a desire to uphold or support our communities and cultures enabling them to flourish.
But can they influence the research or researchers?
Again Hell yes - Autistic people should be involved and iteratively influence autism research in any way they can but it also comes with a health warning. To engage it has to be safe because it seems currently a minefield of who you can trust or being used to ‘autwash’ deceitful agendas. It seems absorbing harmful content and ideas, you take your mental health in your hands or should I say it's often unavoidably in others hands. You need to accept there are a hard core with financial and ideological self interests who simply will not change their minds on direction no mater what excellent work or words you make. Some it seems will actively try to stop you but by chipping away, illustrating and amplifying the many and diverse authentic autistic narratives you start to create individual social chain reactions blowing stereotypes out of the water just by being you.
Finally as an artist and autist I feel It's not about a tasty INSAR infographic, or to inadvertently prolong autism traditionalism, it's not even about a pretty but patronising picture or telling inspirational porn stories. It's about autistic emancipation.
Oh and the ‘crows in the fields of autism’?
No they're not there to traditionally represent the villains. They're there as the often stereotyped, misunderstood and underestimated survivors
(avian theropod dinosaurs with a heritage of millions of years behind them and who will most likely outlive the human race)
We all have to be survivors and stay just a while longer
(to see this change through)