November 29, 2017 § 6 Comments
Rare is the artist who can focus on their creative practice alone. My own professional life has become so varied that I myself struggle to balance the work that pays with my studio practice. Creative project development, managing the projects I create, my consultancy work, and mentoring, are all incredibly engrossing, rewarding and (I have to say it) time consuming.
It’s been a struggle to keep my own creative practice going as I’ve pushed forward all the other aspects of being a socially engaged artist-activist-facilitator, since my autism diagnosis in 2016.
I can’t complain (because I love it) but I do now need to ‘get organised’ – a term which ordinarily is an anathema to my brain.
Butterfly brains like mine don’t ‘organise’ in the conventional sense. No. Brains like mine like to organise through flow. And yet, I recognise that my in some ways super-efficient tendency to tackle work demands on an immediate – it’s in front of my nose so I’ll do it now – basis is not always going to get me into the studio early enough, or necessarily help me strategise longer term (beyond this being my strategy, as it were).
In fact, the truth is that unless I ignore my inbox entirely, or deactivate Twitter, I may not leave the house before midmorning some days. Some urgency will grab my attention – I can get sucked down a rabbit hole of questionable use (though I maintain this is how I research, and that my best finds come about when I’m browsing), or throw myself into a fresh piece of consultancy that means I’m still in PJs when the post arrives (these days around 2pm). And then there are the inevitable meetings, meetings and more meetings – from which I must decompress.
OK, that quick-fire attention to new work leads is a plus, and can really pay off, as nothing impresses potential clients more than speed of attention to their needs – which in my case is genuine, I really do care. We autistics have to play to our strengths in the workplace after all. But could I prioritise my studio time in other ways?
Obviously social media can be a big ‘drain’ on one’s time – except for the fact that it can also act as a quite wonderful addition to the autistic freelancer’s workspace. Water cooler chat, professional networking, and a gymnasium for the ‘overactive’ mind – it’s all pretty positive when you frame it like this. I often tell the artists I mentor that some of my best opportunities have been created online, by hanging out, dawdling a while and putting great content out there as a calling card.
None of this has been done strategically by the by – it’s just happened.
Equally, I’ve had some major fallow periods and this has been pretty amazing too. There have been times when ‘realtime’ (how I hate the term for it’s hierarchical connotations) has taken over (as in days of old) and there simply hasn’t been time for Twitter, Instagram, and the like. It’s been edifying in many ways, involved a lot of masking (not so good) and made me intensely productive in the studio. AHA!
You see this is it. The autistic mind in my experience finds regulation tricky, and how the butterfly brain loves to flit from email to blog post at will! I speak for myself, of course, but so so often it’s an all or nothing thing for me. I’m either ONLINE or I’m OFF. Time spent away makes the social media platforms seem glitchy and a bit like Teflon – my brain forgets how to connect. People move on, the platform ‘upgrades’ and it’s all shot. You have to work at it to get back to where you were as a presence in people’s online minds. Don’t get me started on how bad the non-chronological timeline can be for autistics. We need our networks dammit! Sometimes this is even life-support.
So the prospect of creating some kind of structure for my work beyond the reactive is intriguing – how will I regulate the switches involved and will I really be ‘more productive’? My suspicion is that I will be differently productive, my worry is that I will lose out on flow. The ultimate goal is to manage it all, hold onto to all the plates I’m juggling without going into overload.
It’s my deep suspicion that much of this will require fine calibration, and that like taking vitamins (which I’m also trying out) I will be prone to forgetfulness, and lose track of the various jars which will gather dust and simply litter up the place. New habits and routines can be hard to sustain – like the over eager resolution, destined to fizzle out before Christmas.
Wish me luck. I really, really don’t want my creative work to slide away. So that’s a major motivation. A studio practice is all about turning up, and I’m looking forward to getting stuck in. After all – I should really practice what I preach to my dear mentees. Keep it going, find space for your work, carve out time!
November 19, 2017 § 18 Comments
Yesterday I visited a dear, dear old friend. She is not dying, she is living – though time is closing in.
I had left it late, not wanting to impose, not knowing how to approach this illness. We kept saying we would meet – but we didn’t find the moment.
Text messages came sporadically, and then a sudden miraculous phone call before a visit to Rome in the spring. On impulse I had sent her the wedding photos I found in a drawer.
Later she wrote me a formal thank you, in her beautifully neat and steady hand. Realising this was a way to connect – as cards can be read out loud and enjoyed as part of a conversation – I wrote, and wrote, newsy greetings on arty postcards.
I’m sitting in a turkish cafe which claims to be the oldest coffee house in Europe (!) waiting for L who is sitting an exam close by. How I wish you could be here with me…
And on I would go, without mentioning the illness, hoping to send her what she wanted most – infusions of life, laced with plenty of humour. What we best liked to do was talk (for hours, about what I don’t really know) and laugh until we were hoarse. Her uproarious laughter is what rings in my ears when I think of her.
When she called in the spring, it had been like going back in time. I got the photographs! How lovely of you. Her voice was the same voice. I was astonished, overwhelmed, delirious. There was a moment of hesitation, some momentary confusion, and her confidence evaporated cruelly. But it was only a moment. I love you, she said. I said, me too! I hung up with the firm idea that we would meet after Rome, but we didn’t.
Time passed, and I waited. In the summer I began to send photographs, videos, and a stream of messages from Spain. A hospital bed had been installed at home.
What can I do, I asked? Write, write…she loves to get cards from her friends. So I’ve been sitting in cafes, writing family news. I’ve reminisced about the old times, filled with do you remembers.
And in the past few weeks I sent messages to the family, but my need for clear signals probably got in the way. I’ve been wracked by hesitation and worries about etiquette. Without a blueprint I admit I’ve been quite lost.
Then suddenly a message arrived, she wants to see you.
Yes, yes, I’ll come anytime, just say!
But we lost the thread again. They must be full tilt, I imagined.
A friend called, and said, I went. In the end I just went.
But I couldn’t just go. And the waiting (not knowing how to proceed) was agonising.
So I radioed in my condition. Please forgive me for troubling you at this difficult time…I opened out my autism like steamed envelop.
The message came a few days later. Come, come now.
And so I did, and travelled through the filthy autumn night, a darker winter threatening with each curve of the road, with each swish of the wipers, not knowing, just not knowing what I would find.
As I rattled in the back seat of a hired cab I became drowsy and sank into a reverie where memory enfolded me. Unpicking the years, each one (more than 30) was brightened by her smile and the laughter which crackles in my ear at the thought of her.
The door is always open, the text message vibrated as the car sped closer. This is code for don’t ring the doorbell (I decided). I imagined that it might disturb her.
She is tired the message vibrates again, so very tired.
Sustained by my memories I pushed at the handle with more self possession that I knew I had. I’m entering a zone of trust, I thought. I am here at last and I am welcomed, SO welcomed.
I want now to record and relive this moment.
She is tired, she is so very tired. And I’m not certain that she knows precisely who I am, but she is who she always was, and gorgeous in her acceptance of this ‘stranger friend’. I furnish details of our connection, reminding her of all her kindnesses to me over the years. Did I really? She asks breathlessly. Yes! Yes! I smile.
We lock eyes for moments at a time searching for one another. She is so tired. Sleep I say, and I will sit with you.
Will you really? That’s incredible, she says, sinking back. She closes her eyes and I survey her face, registering each feature. She is still beautiful, if not more so.
A nurse approaches brightly with a cup of tea. She can hold the cup and drinks deeply, with great speed. She brightens a little but remains so very tired. We hold hands. I tell her I love her and that she is my dearest friend – she says, you too. It’s like hearing a distant echo – but I know she means it because her heart is open with acceptance (it always was).
She’s so very tired. Would you like me to leave? I ask. My question is returned, and so I sit a little longer eking out my time. Finally, I break the spell, I mustn’t overtire her. As I begin to take my leave she reaches out to me and we hug. Though it is not a hug in truth – it is the deepest embrace to which we both hang on unwilling to let go. I have never known one like it.
She is gifted at hugging, and I leave in a state of grace, saying, goodbye my darling, to which she replies with the same.
I left with the promise to return. I’m repeating myself I know, but she’s not dying, she is living – and I’m not ready to say goodbye.
November 17, 2017 § 1 Comment
Out of the Ashes – notes from the frontline of creative practice on the boundaries of visibility.
My talk for:
Untold Tales of Neurodivergence and Mental Health in Oxford, a panel hosted by The Oxford Research Centre in the Humanities (TORCH) and Pitt Rivers Museum. Pod cast also available.
My talk today is about navigating the rapids of freelance work as an autistic creative and the challenges of working collaboratively across neurologies. My recent research has been a personal journey but has included a consultative partnership in the US and many conversations with autistic professionals across the globe.
I have come to know of so many talented hidden voices, and, while my talk is about a singular process, so much of what I have to say has a wider application.
My contribution to the theme of ‘Hidden Beneath the Surface’ is a tale of struggle in which becoming visible is an ongoing process and at times a question mark. What I offer are some preliminary thoughts culled from a much longer draft report for Arts Council England.
I am an autistic artist and creative project lead. I stand before you as a person in translation.
I form part of what has been termed the “lost generation” of individuals who are 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.
I am now coming to the close of a unique piece of work, a personal case study in the field of freelance project work funded by the Arts Council. The aim of this research is to design an enabling toolkit for my work as an autistic project lead, which I will also use to enable and mentor other neurodivergent artists.
The key to understanding this piece of work is that I have had to build my tool kit from scratch as my project has unfolded. This is the first time I have worked visibly as an autistic person and attempted to advocate for my needs in the workplace.
Freelance project work in the arts is often informal, characterised by highly individual working practices, and without clear structures. We need funding to create self-led projects from which to 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.
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 the funding barriers, and yet my project proved disabling and needed major adjustments.
Autism as culture
Autism is both a neurological and cultural difference. We are a small minority with a unique social difference. We live in societies which expect and demand from us a social orientation and aptitudes which are quite other. This is pervasive and disabling in ways not easily recognised or understood by the majority.
But those who work with us 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 itself (Mia Mingus). In an ideal world, our needs should be accepted without question and active measures taken, but in reality, they are mired in social complexities, and we are currently forced to navigate access via the very social codes which can disable us.
Deconstructing the power imbalance
Aspects of my experience stand as a cautionary tale. The earliest iteration of my project floundered on the question of inclusion despite this being its primary goal.
The bare bones of my situation were that I had agreed to work collaboratively to shape a project around my needs. I had lent my creative idea, and my neurodivergence was the rationale for funding; but still my needs became submerged. So how did this happen?
Well, I think we need a wider understanding that effective inclusion is a two way street of adaptation, and that accommodating autistics requires the will to focus adequately and make significant and responsive behavioural changes towards us – especially in close collaborations across neuro-types.
And, 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.
There exists a certain ‘tone deafness’ to the nuance of our autistic being, which has been dubbed the ‘double empathy bind’ (Damian Milton).
Neurotypicals find it difficult to relate to and engage with autistic experience, and vice versa.
A mirror world exists in which the only difference between us is that of number. I promise you that many of the ‘flaws’ suggested by the deficit models of autism can be aimed at neurotypicals from an autistic perspective. This has perhaps been my profoundest piece of learning.
Project leadership and design
To lead a project, I need to work in ways which minimise my anxiety. Anxiety is a constant for many autistic people, and can become disabling.
High standards of professional practice can be extremely helpful in countering anxiety at work.
But my project had unwittingly placed too much reliance on a single means 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.
This was hugely inefficient and anxiety provoking, and at times it seemed my project had been built on quicksand.
I’ve learned that enabling project design will include multiple and direct access routes, and allow for a hands on approach in all areas where outcomes matter, also that truly successful access must be written in at the point of design and not simply added on later. My toolkit and my thoughts about project design have begun to merge.
In the informal freelance arts sector, there can be a high reliance on NT friendship codes and relationships.
Autistic access needs can be socially misunderstood due to prevailing norms and the emotional needs of others. It isn’t easy to find a way to tell your colleagues that the emotional labour they take for granted can be taxing enough to make you lose the power of speech later in your day. Invariably, people tend to feel that your needs don’t apply to them, because these norms are so powerfully dominant and immediate in our lives.
But it is beyond stressful to decipher and manage certain types of emotional demand embedded in social codes at work.
My mid term project hack was to establish rules for contact, and filter interactions by limiting contact time and channelling all communications to one email address.
These simple adjustments quietened down all noise which was not work related. Some forms of invisibility can be a very good thing.
Masking and trauma
But generally we have to mask or otherwise camouflage autism in the workplace, and this is exhausting and destructive in the long term. It is this very issue my research seeks to address.
It is genuinely hard for colleagues to understand this, because autism can be invisible even when we try to explain ourselves, and such failures of communication can be genuinely traumatising.
Our struggles 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.
As autistic professionals we face a bewildering tautology. In order to become visible, we must express our needs in translation. We share language and use the same words about a sometimes radically different set of experiences. We cannot thus assume a shared meaning or understanding. This is why it is vital to focus on the machinery of access – the nuts and bolts if you like.
Translating autism is a job in itself and no guarantee of successful communication, and though I am a huge believer in cultural advocacy in its many forms, I think it is unwise to expose ourselves to this labour in workplace negotiations.
Equality, I’ve come to think, should not require that we ‘overshare’ our vulnerability (so to speak). This can serve to accentuate the power imbalance in collaborations across neuro-types.
I think that smart project design will be the kind that fits so well you can barely see it. And for this, we need the liberty to design our projects around our neurological profiles, and present our toolkits as a matter of high professionalism. For this we need spaces to think and plan autistically, and to share and disseminate our learning, which is my intention.
My quest has taken me much deeper than expected but I think my learning is all the greater for it.
Visibility is not for everyone, because privacy really does matter and may be crucial for wellbeing, and the layers of our suppressions are multiple and complex. But I have found the urge to test these boundaries has brought the richest of rewards – that of personal and professional congruence. I am profoundly grateful to the Arts Council for this opportunity to develop my practice as an autistic creative.
In becoming visible, we encourage others to do the same. This creates momentum and so can lead to change. But, in doing so, we can be measured in what we share, and this too is our right.
November 17, 2017 § 2 Comments
We are a “lost generation”, who are finding themselves. We’re adult autistics, diagnosed later in life, and we are all pioneers!
The truth of this hits me everyday as I find new people to marvel at, and so many new voices emerging from the shadows of invisible neurological difference.
Yet, being first is both exciting and difficult. The birth of my project The Museum for Object Research is a perfect example. We have struggled to come into being – but we have arrived at last!
We’ve grown from being a small WordPress blog (now deactivated) into a website to be proud of. So please do check us out at www.museumforobjectresearch.com We have migrated to a new host, to accommodate all the wonderful content we have gathered during our recent Arts Council funded research & development period.
Currently, we are still listed on WordPress, but you won’t find our blog posts on the WordPress Reader when we publish new content, so do make a visit, you can now subscribe and explore our exciting new features, including the, Autistic Voices, section. We also feature our new autistic initiative, WEBworks.
Objects can can have a very particular resonance for autistic people. I am no exception. my connection to objects is joyful, and at times playful. It can also be deeply serious. I’m interested above all in objects as a language which transcends the need for words in creating meaning for us.
You can tell I’m excited, right? Right! So do pop in to see what all the fuss is about.
We’re also looking for content – in particular for the, Autistic Voices, section – where the focus is on autistic relatedness to objects.
If you would like to contribute a post contact me here.
November 1, 2017 § 9 Comments
I’ll put it out there – I’ve had a very challenging time of it recently.
It’s a funny thing finding out you’re autistic late in life. I still sometimes wake up in surprise at my ‘newfound’ situation – and lately find myself astonished at some random moment in my day when my autism is revealed to me as such.
I thought these ‘quirks’ were just me – and they are. But they are also autism. These are the ways in which being me are autistic. It’s quite glorious and freeing – but I also get to grapple with how disabled I can be in many situations, particularly interpersonal ones.
The other day I stumbled on a new old friend – prosopagnosia – a form of face blindness. I can actually recognise faces and can be remarkably good at remembering where I know a face from (once I rolodex and pin down the exact circumstance in which I got to know the face in question). This is so satisfying! For years this skill even tricked me into thinking I was quite brilliant at recognising faces. It’s a good example of how compensation skills can mask disability.
So, it was surprising to me that some years before my diagnosis, I was presented with a room of 6 years olds whose features I found confusing to the point of blankness. Seen as a group I just couldn’t tell them apart – the fact that they moved around so much didn’t help either! Vestibular issues are at the heart of many of my visual/spatial challenges and so this figures.
More puzzling still was the time I thought a photograph of a man was me. This should have provoked more curiosity on my part than it did – but my bemusement at the time was quite drowned out by the mirth it caused my family who rolled about at my mistake. I myself found it quite hilarious, I must admit.
Looking back I see how contextual my facial recognition is. The evidence before my eyes was suspect even to me. What a big nose I had! What were those shadows on my face? All I could do was shrug at the loss of looks age seemed to bring!
Turns out it was not my nose, and the shadows were sideburns (!) but the point was that it should have been me, because the photograph was taken during a boat trip in which I was there. Other family members appear. They are sitting exactly in front of where I was sitting on the boat, (precisely where the male interloper seems to sit). Working backwards I now realise that it’s the angle that’s wrong – and so I simply don’t appear. Some strange man (who I don’t remember being there) is sitting where I should be! He’s right in front of my niece – where I should be!
Context overrode all visual evidence to the contrary. Blimey!
This episode was brought to the fore more recently when a similar blunder occurred. I mistook two random men in a photograph for two collaborating artists (one of whom took the photograph). Here the narrative which drives their creative project overrode the obvious evidence before my eyes. It was potentially embarrassing – but at least I can now say that I am in some ways quite face blind. My strategies are incredibly honed – and I do hold faces in my mind (I love looking at faces too), but this becomes weakened and breaks down easily it seems.
It’s more evidence of the quite different ways in which I piece the world together, and the myriad ways in which I must work harder and can get left behind.
It also makes me prey to misunderstanding, and frankly abuse. It’s not fun finding out you’re vulnerable to manipulation, but it’s important to face it (and take protective measures).
I’ll end this post on that delicious pun.
October 23, 2017 § 11 Comments
It’s been a little while since I blogged in this space. Life has been busy for this autistic.
I’ve learned a great deal lately in my professional life, mainly about the absolute importance of working from core knowledge. Congruence is the buzz word right now – and from it so very many good things can and do flow.
This is all very timely and segues nicely into other areas of my life. Viewing the recent Chris Packham documentary Asperger’s and Me has set the seal on a growing trend. I know it wasn’t a perfect programme on autism per se (I even wonder what such a thing would look like as there are so many ways of being autistic) but it was perfect for Chris.
Many will point out that this was a white male perspective (as ever) and that there was an unhelpful division between Asperger’s and autism (a false division some would argue – myself included). Horrifying sequences were filmed in the US where autism was likened to cancer with resultant ABA ‘behavioural chemotherapy’ administered. I’m still reeling. We witnessed the controversial TMS intervention being applied to a young man – a subject I myself have written passionately against in a previous blog post.
Yet Chris being perfectly himself is what we’d all like – and in this sense it felt nothing short of a miracle. We saw (perhaps for the first time?) an autistic man owning the screen quite openly – after decades of masking his autism for viewers he dropped it revealing a far more interesting persona (even than the one so many of us have admired for so long).
Yes, Chris is an even more compelling personality as an autistic – so swallow that world. Absorb the truth that our unmasking can be your enriching. And not as a beguiling enchantment (as autism sometimes is portrayed) but as a reality – Chris didn’t smooth over the areas of intense struggle which led him to consider suicide seriously on three occasions.
Okay, this programme suffers on some levels – unhelpful ideas and information slip through the net at times, but Chris holds the narrative. His status and skill as a presenter has conferred this power (one so rarely held or shown by an autistic), and his openness can be a gift to us all.
There have been three tangible occasions already in which the programme has helped me (I mean specifics – the overall effect can’t really be quantified). Three conversations which have been eased by Chris.
I’ve been greeted by a new level of understanding and given considerations not previously offered. I have been able to say how hard it is for me to socialise with people who don’t know I’m autistic – how much I sometimes dread it, how much masking can be involved, and how I won’t sleep afterwards because my sensory system can’t quickly shift from hyper alert masking mode to relaxation. The later a party the longer it takes me to unwind, and the more impact this has on subsequent functioning for days to come.
Finally my family understand, I can talk openly with some of my neighbours, and I can tell a dear old ‘neglected’ friend why I never stayed in touch. This is down to Chris – if they’ve watched the programme a new foundation has been laid.
I’m not saying this will work everywhere or every time. I’ll still have to mask and I’ll still be met with blank faces. But I can now manage certain relationships with more realistic expectations on the other side. This feels like another watermark moment. So thank you Chris, and amen to more of that.