My Autistic Professional Template  also formed the basis for Sonia Boué’s, Out of the Ashes talk for Oxford University TORCH.

Introduction

I am a professional autistic artist and creative project lead. I form part of what has been termed the “lost generation” – diagnosed late in life due to recent advances in knowledge about autism. In my work as a freelance professional I need accommodations to access the same level of opportunity as that of my peers.

The following is the result of a six month research and development project, funded by Arts Council England. The aim of this research has been to create enabling conditions for my project work, and in particular in my role as lead artist, because there are no blueprints currently in existence for this kind of work.

My thoughts during this period have often been guided by Brent White, Director and researcher on autistic leadership, at the ACAT: Ala Costa Adult Transition Program, on the Ed Robert Campus at Berkeley.

Jon Adams has provided autistic peer support through Flow Observatorium.

Professional mentoring has been provided by Miranda Millward, and creative mentoring by Sarah Mossop.

Freelance arts project work is often by nature informal, characterised by highly individual working practices, and mainly without clear structures. Autistic artists need Arts Council funding to create self-led projects from which we can build sustainable artistic practices in line with our peers. Yet without adjustments for the challenges involved we can quickly become disabled in the freelance melee. Navigating this world requires a well constructed set of practical measures.

There is a great variety in how we present. I therefore make no general claims for my template – it is by nature ‘me’ shaped – but I anticipate that my experiences will resonate greatly with many autistic freelance creatives and help inform the arts organisations who hold our employment and opportunity in their power. Our ideas are often powerful and original – funding us can be hugely beneficial and reap rich cultural rewards, but the barriers to our inclusion can be overwhelming.

I have made it through this funding barrier, and yet the early to mid term circumstances of my project proved disabling. Access was also impeded by factors beyond my control which were unrelated to my autism, and the emerging model for my work includes experienced and trusted neurotypical mentors to identify and troubleshoot the elements of my projects that autistic navigation systems can’t reach.

My project clearly signals the need for rights based approaches rather than relying on informal knowledge and conversation to gain access when working in close collaboration across neurological type and attempting to lead a team in a freelance context.

Autism as culture

Autism is both a neurological and cultural difference, and the disablement of autistic people at work is an ongoing civil rights issue leading to inequality and an increased risk of mental health problems. We are a small minority with a unique social difference. We live within a dominant culture, which runs almost exclusively on social aptitude of one kind. This culture is pervasive and disabling to us in ways not easily recognised or understood by the majority.

But those who work with us don’t necessarily have to understand us on an individual basis. They don’t need to ‘get’ autism in its entirety – this is a big ask for our colleagues. Indeed the demand to share personal information about ourselves to gain access is an issue in
itself1.

In an ideal world our needs should be accepted without question and active measures taken but in reality they are mired in social complexities. Ours is a pioneering generation tasked with beating a path for ourselves and future cohorts of autistic professionals.

These are rights based issues, which we are currently forced to navigate via the very social codes which disable us.

Deconstructing the power imbalance

“I should not be subjected to this stress on my own project.”2

Aspects of my experience stand as a cautionary tale. The earliest iteration of my project began to flounder on the question of inclusion despite this being it’s primary goal.

The bare bones of my situation were that I had agreed to work collaboratively on the understanding that the project would be shaped around my needs but this proved impossible in practice. I had lent a creative idea and my ‘neurodivergence’ was the rationale for funding but nonetheless my needs were submerged. This rendered the original project proposal unworkable.

As an autistic person I must adapt myself constantly to engage with the ‘neurotypical’ world. In research terms my question became – what happens when I stop this process of constant adaption and ask for the accommodations I need to work accessibly so that I am not disabled in this situation?

In practice this did not work out – quite the contrary – and my energies continued to be painfully directed toward my own adaptation.

In general terms we need a wider understanding that effective inclusion is a two way street of adaptation. Accommodating autistics requires the will to focus adequately and make significant and responsive behavioural changes towards us. The level of adaptation this implies will depend on how close the working relationship needs to be and the kind of access required. While we may seem to speak the same language our innate human difference as autistics can be greatly misconstrued, and our value as the very people who can generate ideas and employment can become easily obscured in practice. This can be because our difference is not convenient to others.

There exists a certain ‘tone deafness’ to the nuance of our autistic being, which has been dubbed the double empathy bind (Damian Milton)3.

Project leadership and design

“None of this is not stressful for me.”

To lead and take responsibility for funded projects I need to work in ways which minimise anxiety because it can become disabling. High standards of professional practice can be extremely helpful in this respect.

But my project had placed too much reliance on one key point of access, and I was responsible for outcomes without being able to move the necessary cogs directly in an ambitious and complex piece of work.

I invested a disproportionate amount time in unpicking differences in collaborative working styles and finding ways to communicate my needs. But the continuous struggle to negotiate working terms and chase schedules was negative and eroding. My project appeared to be built on quicksand.

I attempted to modify the project design and consulted my mentors, but in access terms, my ramp was broken and I was disabled on my own project.This experience has enabled me to identify my need for more direct access routes and a hands on approach.

My highly logical thinking style, my ability to see priorities clearly and my intuitive grasp of sequence and method are also key factors in considering accessible project design. Not being able to work towards outcomes logically and intuitively at my own pace stalls my brain.

Identifying that I am a global and immersive thinker means I can now design my projects around my strengths. Holding their shape in mind as I work on each part enables me to drive priorities and achieve the exacting standards I require.

Any project in which I play a lead role will need to accommodate this profile and be shaped around my needs. In order to remain functional as a project lead I need my collaborators to work around me – and not vice versa.

This was the key to my disablement during the early to mid term of the project.

In addition there was a significant neurological imbalance on the project as I was a lone visible autistic. When my project hit serious access difficulties I realised that I needed to recruit my own ND/autistic team to create a more level playing field.

Social labour

“Its not that I don’t want to be friendly, its just that I get exhausted.”

Prevailing social norms and expectations come at no additional cost to the wellbeing of the general population. But when we adapt ourselves and ‘mask’ autism to gain entry into the workplace we do so at great cost to ourselves.

In the informal freelance arts sector I have found that there can be a high reliance on ‘neurotypical’ friendship codes and relationships. This can block access on many levels for autistics who can’t mask, and be ultimately disabling for those who can. Our inclusion can depend on pleasing others which can be difficult (if not impossible) to sustain and can be classed as social or emotional labour. Autistic access needs can be socially misunderstood due to the emotional needs of others.

But it is beyond stressful to decipher and manage certain types of emotional demand embedded in social codes at work. When this became overwhelming for me I found that establishing rules for contact helped manage this and keep me organised. I was able to filter interactions by limiting contact time and channelling communications to one email address.

These are effective strategies to carry forward into future project work.

As a more general point, when considering social risks in addition to potential ‘social overload’, for autistic artists there may be a particular difficulty in gauging digital vs realtime contacts  (where it is easier for potential co-workers to misrepresent themselves). This is pertinent as we can tend to rely on digital online networking. Properly testing relationships is a further barrier for us to overcome.

Autistic flow vs timetabling and task based work

“I feel cut up in pieces and dismissed.”

I now understand why all my primary school workbooks are empty and peppered with phrases like – good start Sonia, but where’s the rest of your work!

I experience autistic flow as a very specific state achieved by working with rather than against my natural thinking styles. This flow is continuous, often prolonged, and can involve a related state of hyper-focus. The degree of focus which can be achieved is (I believe) atypical.

A potential problem with this in working across neurologies is that there can be an unequal focus of attention on a shared piece of work. Unless sufficient catch up time is earmarked, I’ve found it can be hard for colleagues to keep up with the fruits of flow. I would not in future embark on a significant piece of close work where this focus is not well matched or without a suitable catch up system securely in place.

Flow is what allows me to develop my thinking on a topic or a series of related concepts, it is efficient and necessary for me to stay organised and productive.

During my research I found the demand for me to accommodate working practices which relied on timetabling work (to someone else’s schedule and priorities), and task based approaches (to work through and share core project developments) stalled communication. It also undermined my ability to think and I begin to lose functional capacity.

This learning allows me to factor flow into future project designs.

Mental Health and training.

“I’m at screaming point.”

I soon felt like a canary in a cage. I thought often about how miners used to carry these birds with them into mine shafts and tunnels to detect poisonous gases. If the canary keeled over they knew to get out.

When conditions become disabling we can easily become pathologised. My anxiety became acute. I considered seeking mental health advice when what I needed was to take a break from collaborative work and redesign my project along autistically accessible lines.

My project began with good intentions but relied on an informal knowledge of autism, and in addition had encountered an unexpected and decisive roadblock which was not autism related.

In future I would build externally sourced autistic-led training into project designs for close colleagues. This would both help support my access needs and take some of the pressure off personal explanations. The risk of colleagues misunderstanding autism can be great and can come at a very high personal cost.

I would build mentorship in at the planning stages of any future collaborative work.

Self translation, masking and trauma.

“Every communication is an act of translation.”

Being autistic in a ‘neurotypical’ world demands profound acts of self translation which, although mainly conditioned, are carried out with apprehension and painstaking care. We must often mask or otherwise camouflage our autistic selves to gain social acceptance and access to work. But this is exhausting and destructive in the long term.

It is genuinely hard for colleagues to understand this because autism can present invisibly. During the writing of my Arts Council bid it had been necessary to build up and prioritise my autistic template against a tendency for it to become submerged. With hindsight I can see that these were the origins of what would become a constant struggle.

It was deeply distressing to me to find myself invisible at key moments on the very project which was intended to support my needs. I turned to the poetic form. Publishing on my blog has been a constructive means to articulate my struggle and regain a sense of balance. This has been a highly successful strategy providing an effective means to communicate about autism to a wider audience.

But the circumstances of my project had become traumatic and aversive to me.

Autistic artists as a group have been earmarked as a funding priority by bodies like the Arts Council for good reason. I found that our struggle can be made clearer if we talk purely in terms of access and equivalences with other examples of disablement. The will or ability to adapt to our needs however lies in the hands of our colleagues and is not often in our power to influence via social means of negotiation. This is the nature of our vulnerability as freelancers.

Strategies

“I feel the need to languish in autistic spaces.”

Taking time away from problematic areas of the project was greatly beneficial to my thinking as I needed to arrive at autistic solutions. My mentors helped me asses the difficulties encountered and encouraged new areas of development on the project.

Mentoring also provided me with the vital ‘neurotypical’ perspective with which to decode the situation before me, enabling me to process and navigate my way through it. I was thus more able to gauge which elements of my challenge might fall within the range of problems of translation across neurologies, and those which were other.

Blogging brought in autistic contacts and I began a networking initiative for autistic artists called WEBworks, which aims to offer support with professional development. This is an important outcome from my template work.

My project was originally designed to lead to future large scale and ambitious outcomes in prominent venues. But such spaces can be wholly inaccessible to autistics. Like Don Quijote tilting at windmills, I had been persuaded (by various forces) to lead the way to doors which were closed to me.

I took the reigns of my project and began the job of reshaping it along accessible lines. The result of all the hours spent analysing my project was a solid paper trail from which I have been able to retrace my steps and find my way again.

Conclusions

“I feel like saying sorry my autism is inconvenient, but that would be ridiculous.”

It is easy to talk inclusion but harder to act inclusively. With autism we face multiple challenges in demonstrating and articulating our needs as both cultural and biological in origin and expression.

Our needs may be considered hurtful, ‘antisocial’, and can be easily misconstrued and dismissed by the majority culture. Rights based approaches, education and training are (in my view) likely to be more constructive pathways to more successful inclusion than explanatory routes which can be derailed by the double empathy bind.

I have found that it is extremely inadvisable to rely on an informal understanding of autism and inclusion rights in a serious professional context where access is at stake. Reliance on informal arrangements can leave us vulnerable to disablement and mental health risk.

As I tipped the balance of my project towards accessibility I began to understand that truly effective access design may be almost indiscernible. The smartest design will be the kind that fits so well as to be virtually invisible. Designing projects around our unique neurological profiles would take us closer to this ideal of best fit accessibility.

To arrive at such best fit solutions the space to think and plan autistically is needed.

Elaborating access around more dominant or typical goals and assumptions risks ill-fitting and potentially counterproductive project designs. It also runs counter to the very identity politics which many late diagnosed autistics seek to embrace. We don’t wish to be enabled to be more ‘neurotypical’, a point which has particular resonance in creative practices.

My research suggests that issues of identity, accommodations, and project design are likely to be closely aligned – and that what we need as a group are most probably holistic designs for holistic thinkers. This understanding and related insights will be carried forward into my future projects and form the foundations of my mentoring and supportive network development with the WEBworks group.

I can now share my research and attempt to inform a much wider conversation about neurodiversity in the arts in the freelance sector.

Sonia Boué – September 2017

1. https://leavingevidence.wordpress.com/2017/08/06/forced-intimacy-an-ableist-norm/
2. Quotations under section headings are from my field notes.
3 On the ontological status of autism: the ‘double empathy problem’
Damian E.M. Milton, Pages 883-887 | Received 08 Jun 2012, Accepted 13 Jun 2012, Published online: 16 Aug 2012, Download citation http://dx.doi.org/10.1080/09687599.2012.710008