#3 in the Orphaned Identities series
(A photograph from my Orphaned Identities series.)
I was recently commissioned by the Arts Council, to undertake a case study of my practice as an autistic arts professional, in order to design a series of access measures – which may also be of benefit to others. I’m learning a great deal, some of which I share here in the hope that it will contribute to the conversation about access at work.
I research at the coalface of freelance work and in conversation with other autistic professionals. Patterns are emerging at this midway point in my funded work.
This study has thrown up something important. Namely that there can be a real difference in perceptions about what ‘turning up for work’ means when collaborating as a freelance.
In my own case I’m learning that my standards are high – perhaps usually so. Also that I need to be in direct control of my work flow, especially when a project is complex, and in circumstances where I have high responsibility for outcomes.
This doesn’t present a problem in projects with clearly defined roles with discrete responsibilities where a standard of expectation is reliably matched. Through An Artist’s Eye was a perfect example of when this works well.
Autism is a professional asset. If you work with us you’ll often find meticulously organised people getting results, and meeting deadlines absolutely on time.
This is because we can often see the job that has to be done with great clarity. Myself, I work methodically paying attention to the parts, with an aerial view of the whole constantly in mind. Holding this level of focus is joyful and important to me. An athlete fresh off the blocks I’m running in full flow.
This is my rhythm and my method. And it works. This is so because my work and my being are as one.
So my commitment is absolute whether the work is a hard won commission with public funds, or a personal project like Orphaned Identities. I’m on it 100%.
I’m beginning to understand that a well designed project (autistically speaking) has controllable elements and can be worked through directly and systematically using flow, and also hyper focus whenever needed. While a poorly designed one has too greater reliance on third parties who may be remote, unavailable or seemingly ‘unreliable’ from an autistic perspective.
Such obstacles can seriously disrupt autistic flow on creative projects. And this represents disablement in action. Disrupting autistic thinking in a workspace, with the need for constant negotiation of terms (for example) or through distance and serial delays, has the effect of derailing purpose, and furthermore overloading functional capacity – and there’s absolutely no need for this with some careful thought to design with respect for access.
Chasing the tail of a consistently unavailable colleague (for example) can be extraordinarily stressful, not to say aversive. Such practices are perhaps commonplace in freelancing – but can have an effect not unlike ‘trolling’ on an autistic person. The toxicity of poor design in the workplace for autistics can’t really be overstated.
Matching commitment can also be an issue, and there’s an element of luck, which has nothing to do with neurology. ‘Discipline’ can sometimes be lacking in freelance environments, which can present a minefield of wrong-footing.
Building strategies for survival is essential. And when I say survival I mean it in the truest of senses – not in the breezy way it’s used in magazine style journalism. A real dilemma that we face is that our non-autistic colleagues may not absorb the seriousness of socially disabling bias’ at work because we’re often so conscientious.
This raises the issue of training for our non-autistic colleagues. In conversation with my fellow professionals there emerges a powerful consensus among us that training must be autistic led if it is to be of actual benefit to autistic people – who after all should be the natural recipients of positive change.
As an individual in a freelance setting – my growing feeling is that designing my own access measures is essential to create the best fit for me, but that autistic led training for colleagues could be an excellent complimentary addition in future.
Currently this is all still very much a work in progress – but I’m immensely grateful to my autistic colleagues for their invaluable input into my thinking. Being able to situate our practices within community is a consummate survival strategy in itself. This is why the future direction of my research in this area will focus on networks.
The issues I raise are common to a growing network of autistic professionals – currently we suffer the demands to mask our ‘condition’ due to socially embedded expectations at work. This is seriously disabling and real access challenge in freelance situations.
Yesterday I learned a great deal about being invisible as a socially engaged artist – in the context of intersecting minorities.
I am an autistic white Anglo-Spanish woman of middle age. My current project in collaboration with Elena Thomas; The Museum for Object Research, does not on the face of it seem concerned with the kind of social and political issues that characterise my practice. The group concept is one thing but our individual practices are another. Social engagement is woven in to what many of us do.
As I arrive in a very particular context to speak to potential parters I’m confronted with the full force of a fundamental project truth. Our project is white, though not without a core of significant diversity. I knew this – but stepping out of Elena’s car I knew it in a more immediate and profound sense.
Our whiteness as a group is accidental – but we must own our privilege and understand this coincidence as part of a wider privilege in the arts, and of course globally. We must own it and act responsibly.
As I surveyed my surroundings I drank in the crumbling Victoriana and sixties high street design with zest. Unlikely juxtapositions that shouldn’t work, that don’t work – but are fascinating when seen in relief. This is history made visible, laid bare.
A nearby mosque, kids on the streets and cars piled up on the pavements crammed along side roads, while the main artery rumbles with heavy buses heading to half remembered places.
This is an area of Birmingham – a city seemingly in a fit of constant reinvention to the point of frenzy. My old home town.
I experience this autistically – knowing that my love for this moment would be considered intense by many. All day I have been touching the edges of an unknowingly autistic childhood. I have stepped into memory like Dr Gloucester – up to my middle – as a series of tangible intrusions.
In another part of my brain, I register my whiteness as an exclamation mark. I feel my autism thus most often – have I let it eclipse my whiteness as I reach deep into a newly discovered identity?
I gather my senses for a meeting. Quickly I must adapt to strangers. This is my autistic challenge – to follow the conversation and decode it in the moment, to sense the tone in the room and become it, to pass as a typical neurologically privileged human. My act is now second nature with aftershow fatigue as the encore.
I have done this now so often. I know how it will go. I will appear as a privileged white woman of middle age and middle class – articulate and lively (unless my energies run down, unless the room fractures through light and sound input, or I am suddenly too cold. Unless, unless…) Unless my words fail.
But I have measured my journey to this moment carefully, I have conserved my faculties (just) by planning. Only my collaborator knows this, and she knows too that my way in to this meeting is for her to lead, while I find my feet.
We talk pleasantly – I find my moments of entry as Elena carries the conversation. But there is a question of fit, of specific community, of reaching hard to reach groups. Yes.
I see it of course – we don’t fit, which is fine. But I won’t be unseen in my struggle. I gather my courage and my moment comes to say to a small group of strangers – I am an autistic artist.
I explain the roots of this project in my autistic practice, and my funding from Arts Council to make a professional template for my work as project lead. My voice almost leaves me but I hold on.
I am met with blank faces.
We talk some more – the topic is back with our hosts’ agenda. This is of course fair and proper. We are in their space.
But I can’t leave this. I have to ask about our intersections – autistic and black, Muslim and autistic. I am met with a level of confusion – I’m told hesitatingly but in so many words that autism is associated with children and is a stigma among these communities. I nod. It’s a hard sell, I say.
Another level of my privilege. To have an autistic community and access to the current wave of thinking on neurodivergence.
I hold my breath and think about my people.
Did I imagine it or did my voice become a little monotone and robotic as I edged across the tightrope of my disclosure?
As I became visible did I become more stereotypically autistic – did I do something so subtle (I have awesome camouflage and acting skills) as to act up to my audience expectations of an autistic person?
It is highly possible, as my finely attuned social calculator calibrated their responses – or lack of them.
Would they now be looking at me anew?
Or course they would. And with somewhat more curious gazes.
I come away with some serious questions. How can our museum become inter-sectionally inclusive? Am I engaged enough with the whiteness of my autism? I want turn my coat inside out and show you the seams of my difference – my many differences – which like the buildings around me on that windswept afternoon in Birmingham lay bare a history.
This is research at its best. These are the dialogues we must share.
My thanks to our hosts for their input to MfOR R&D thinking and to Elena Thomas for her part in this enriching process.
Yes, we do have power. My post is not a simplification of wider more intractable structural power imbalances which work against autistics, but rather seeks to address a specific area in which power may be regained.
Society tends to ignore the contribution of autistic workers – both employed and potential workers (for many of us it is said are unemployed largely due to the myriad complications of ableism in our lives). Visible autistics are often cast either as recipients of charity in the workplace or as tech trojans, maths professors and sundry geeks.
There’s also a galling new trend to laud autistic workers (with the help of stereotypes) as work-horses. Honest as the work day is long! Give them a repetitive job and they’re happy! Accuracy means productivity! Wink, wink! Employ an autistic!
I’m very glad people are getting work, don’t get me wrong, but we have a long way to go because so much of this is predicated on neuro-normative thinking – but I better stick to what I know and talk about my own case.
I believe that many of us probably form an invisible workforce, whose skills can’t easily be replaced by others in the market place – because they are not autistic. We are both employees and freelancers – some of whom may also create opportunity or employment for others. Our brains work differently and often originally – we can gain recognition but also do so for others by association, or more darkly though imitation and appropriation. Subtle use of autistic smarts by neuro-normatives is a thing in the creative sector – conscious or not – and it has to stop. We often do not receive recognition or added value for what we bring to the job, in my experience. Neurotypicals can be slow to grasp the deep benefits autistics bring to work, and overlook them as the players they are or could be. Cultural deafness to autistic smarts, and lack of access to the rules of the game are often to blame. This is what must become transparent.
In some sectors – we’ve gained a curious market value but this does not necessarily filter down to us. Inclusion in the arts is hot, for example. We are, in bald capitalistic terms, currency. Our presence in a organisation or on a project can be valuable in terms of funding (invisibly) because we are autistically good at what we do, and (visibly) because we help tick boxes. Boxes mean cash, and thus we are in the narrowest sense ‘tokens’. We may however be used as token autistics unless we watch our backs and realise our market value, and unless we also assert that our market value must be linked to accommodations. This is really the key to what I’m trying to say.
To hook all this together we need first to identify pattern and causation and call time on certain practices. The nothing about us without us motto works so well at every level of our engagement with co-workers and organisations. I have begun asking where the accommodation is, and doing so in open forums when there is no obvious alternative open to me. Social media is one good forum I’ve found for teasing out hidden code and asserting value.
This is not passive aggression – it is the use of accessible platforms for autistics. If the social codes and means by which they are passed on are hidden to us, we may have an option to use open channels when we judge it is safe for us to do so. By which I mean – minimal personal comeback and maximum gain in clarity.
In many cases I’ve been fortunate in finding true allies – but making visible and engaging in ‘clear-speak’ can be effective where commitment or understanding has been less obvious. In the arts at least, people must be seen to be accommodating – SEEN being the operative word.
I believe it is time to stop talking about inclusion or access in neuro-normative terms altogether, because we need less warm fuzz and more hard outcomes. We have to define this in our own terms. We can’t wait around to win the info war on autism to make a living. We need our jobs and our projects to pay us fairly and not kill us in the process. SO what can we do?
Well, we have some serious bargaining chips in certain environments when we find the means to assert that our skills create outcomes (autistic smarts make for invaluable contributions and demonstrably so). Similarly so when our presence as autistics brings in monetary value to organisations in terms of funding. This we bring to the table, thus we must gain at the table. I don’t want a place I can’t use or decode from – I want an accommodated seat where I can be acknowledged and equal.
I am learning not to be confused by the mere appearance of friendliness or put off by other people’s agendas. I’m late diagnosed, hell it’s time!
SO, something happened.
In collaboration with my trusted colleague Elena Thomas (artist, song-writer, performer and educator), I have asked Arts Council England to support me in creating a document to outline my needs in the workplace. They just said yes! This piece of paper (or more likely powerpoint, video, series of poems, and – oh yes a handy list!) will be my ramp into neurotypcial spaces as an autistic arts professional.
All workspaces are the wrong neurotype for me. All of them. No invisible ramps exist for invisible conditions that I know of. So we have to start talking up visibility and making change happen.
Alongside the challenges of my autistic difference in an often hostile world, I have co-morbid conditions which present me with further obstacles to access. A restricted diet due to functional gut disorder, severe contact dermatitis, and Raynaud syndrome are on the daily menu. I must manage my energies and environments with the greatest of care, and commonly found canteen fare, air con and synthetically perfumed environments can act as enemy agents sending me into a spiral of ill health.
I need control over working conditions but as a freelance this is often a difficult and sometimes impossible challenge. My professional template will be designed to turn this around. A personal breakthrough in managing my conditions has been to gain a diagnosis of autism – at which I learnt that they come with the territory. They’re not autism per se but they come as an attachment and form part of the package.
What this does (in practice) is to bring this trio of troublemakers to heel. I click my fingers to round them up, and we become one. Autistic + co-morbids is the deal with me. I require detailed and specific accommodations in a complex and fast paced milieu – ie the arts!
But of course it is autism – and the myriad disadvantages faced in a neurotypical working context I hope to tackle head on. This is no add-on or postscript to my project. It is the core of my project. If I am to lead and create opportunity for others (my project brings employment among other benefits) then my team must come with me and I feel so lucky knowing that they will. Too long have autistics tagged along or even had their work exploited. Together we may just create a pioneering model.
I feel empowered and grateful – at last I have a way of gaining some leverage and intend to share my learning with other autistic artists who may also benefit.
So how did I get my funding – how did I make this opportunity happen?
Teaming up with professional and trusted neurotypical allies has been key to this process.
I have now spent two years of my professional life learning my way around the lower tier Arts Council England Grants for the Arts funding application process. Through the combined autistic skills of hyper focus and hyper connective thought I can create effective, coherent and strategic funding bids.
So in addition to my own work, I’m now in a position to offer a consultancy service. I can help to analyse and structure a proposal for a GFTA bid (currently at £15,000 and below, and in the near future for higher tier awards) for individual artists and small organisations. My skills are not limited to autistic/ neurodivergent artists & organisations necessarily but I feel this is a particular and strong specialism.
My services can be hired at an hourly rate, and I can be contacted at [email protected] for more details.
Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing.
This post is about access and exclusion.
It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.
And if you say thank you very much for all your kindness but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.
This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody – unless you fancy a nice slap down that is.
Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.
Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).
What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.
Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?
It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.
SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.
This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.
So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.
This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.
I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.
I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.
I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?
My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.
My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.
And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now whatever their needs may be.