September 26, 2017 § 7 Comments
I have been thinking about the constant demands to adapt to a neuro-normative culture and be the autistics others would like us to be.
There’s usually a snag.
Being autistic – being diagnosed late in life – is a process (of) unbecoming.
I can’t do what I can’t do, and I can’t be what I can’t be.
Not ‘neurotypical’ with quirks –
I really am autistic.
I’m just not the autistic you want me to be.
Ah yes, and so it is.
Autism is as real as concrete or snow (except it doesn’t melt).
But you need us to fit in to your ways.
Got it. Ah yes. I got it.
I caught it, and caught on.
I’m suppose to be this, that and the other. All things, in fact.
All things except the one thing I am.
This autism is not convenient.
Not at all.
With regrets and adieus.
This is the wrong autism!
Just the wrong kind.
July 29, 2017 § 7 Comments
(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.
July 14, 2017 § 11 Comments
A brain aches.
But this we know. You and I are different.
We look the same.
And it’s a now you see me, and now you don’t.
Because I am fluent in passing.
This is my great skill. I look like you. I sound like you.
And when I am tired there is an introvert model – on social mode – which dies inside to flick the switch.
Ridiculously, I walk home quite earnestly desirous of an extra leg sprouting from the top of my head. So that you might see me and know my difference without ingrained assumption.
You tie me in knots with your privilege, because that’s invisible too.
And I long to draw it, that leg. Momentarily, I check my privilege – oozing and sticky as a bag of ripening plums – but who can I offend with such a limb?! No-one. No. I’ll shelter in the bosom of that absurdity.
For each time you tell me it will be alright you deny my struggle.
Alright sounds like hammer.
Which. Pushes. Me. Down.
Alright is a privilege.
Deciding not to get stressed is a privilege.
And just so you know.
Every day is a soft clothes day.
July 7, 2017 § 10 Comments
I owe a great big wet kiss to WordPress Discover Editor’s Picks for featuring my last blog post, For I am Human, on the 4th of July.
It’s brought me record likes and a lot of lovely new followers. Many have said what a beautiful poem this is – and I’m overwhelmed and surprised. It was written very quickly, but from the heart, which is the bit that counts probably.
The poem’s sentiment seems so blindingly obvious, and yet autistics everywhere know that it SO needs saying. But I’m encouraged by WordPress making the selection, and by all the positive responses.
Even more positivity flows from making something of an experiential breakthrough in the past weeks. Connecting with more autistic people online, and some in ‘real time’ is beginning to have a profound effect on my mental and physical state. I’m becoming truly immersed in an autistic culture and I’m energised in ways I barely recognise.
I’m learning how abundantly right my brain is.
I think this may also be a stage in the process of becoming.
Diagnosis and it’s aftermath was both wonderful and debilitating. Hindsight tends to brim with wisdom doesn’t it, and looking back there was a period of time spent unravelling – leading at times to something near paralysis. I felt trapped in a box of knowingness without any tools to implement my knowledge. The flat pack had arrived but there were no instructions.
There were also pockets of grief. I’d been given a golden ticket, yet I needed to mourn and let go. Overwhelmed by my isolation (being unknowingly autistic is extraordinarily lonely) I reached a natural hiatus – the lack of autistic playmates in my life was an unmet need I didn’t even know I had.
What soul crushed me on occasion, during my first year as an out autistic, was twofold – my revealed identity in the context of a lifetime, and of being the only one of me in the near vicinity. A vast sea of non-austistic humans seemed to swill around me who, however nice they might be, would never truly get me or provide the mirroring all humans need to develop shared identity.
I’ve come to think that being an autistic human can feel a bit like being constantly trolled. Non autistic humans don’t mean to, but by default the majority culture denies and rubbishes our autistic realities – our inner truths and core perspectives. And this is pervasive.
We’re supposed to pretend and hide who we are to gain a basic entry pass, but stand on constant social trial – doomed either to erasure or failure.
Under these conditions paralysis can be understood, it would take any human extraordinary resources to find a way through. It also takes time to figure it all out.
And, if you’re conditioned to believe your brain is faulty, you can be forgiven for believing that this is mission impossible.
But I don’t think impossible has to be the final word – although spoiler alert – the ‘trolling’ ain’t gonna stop anytime soon. The huge cultural shifts required to accommodate autistic perspectives are a long time coming, but that’s the big picture. I’m talking micro-climate here, and the ability to ‘rebuild’ our individual lives – which will feed back into the collective.
There are three points I want to draw from recent experience.
- Our exhaustions are in part sensory, and in part masking – and are cumulative. I’m learning that these may be lessened when we pass through post diagnosis paralysis and into rebuilding mode.
- Rebuilding requires direct immersion in positive autistic cultures. Access to this culture reveals a state of being in which we are not exhausted by human contact and sensory stimuli are more easily processed.
- Knowing who you are, knowing that you are exactly as you should be and there are others like you is the battery power we’ve all been missing out on.
Finding that there are others who are so very like me is like realising that my basic search engine is running precisely as it should. Within all our different ways of being autistic there is a core feature that is recognisable. Others will have said this I’m sure, but yesterday as I strolled amid the honied buildings of my beloved Oxford, it struck me that we autistics are all running the same search engine and that our variety comes in the form of the different the apps which come with our unique model.
You can blame that image on my new phone upgrade – the other recent acquisition to put a bounce in my step!
Good news is, just like the Bionic Man and Woman – post diagnosis – we have the power to rebuild…
July 2, 2017 § 10 Comments
Photo by Stu Allsop – at RE:collections exhibition 2016 with my installation.
And lo, it came to pass that one day in the later decades of my life I experienced a touch of the ‘normals’.
But please don’t worry – I am quite okay. In fact I’m more than okay. I’m frankly energised in ways I don’t yet fully comprehend.
And again – don’t worry – I haven’t been ‘cured’ of my autism or gone all typical overnight. I am still emphatically me, only I’m suddenly a me with a growing sense that there are others quite like me, rather than me being a somewhat ropey version of you (you – for the purposes of this post being the non-autistic reader).
You see this typicality runs very deep in our culture. It seems to me there’s always a best and correct way of doing things – indeed our whole learning culture depends on such concepts and methods, fathomable only perhaps to a ‘typical brain’. Professional structures depend on this too – in fact typicality is so deeply assumed that I suggest we as modern societies simply don’t even get close to understanding this as oppression. But it so is.
Those of us who experience it simply feel innately faulty – because it is in effect the only kind of template out there, and it covers just about every thing in sight until you get to certain leisure pursuits or the kind of employment where creativity and innovation is prized, and can be self-led. We seem to have a cultural obsession with the conformity implied in ‘getting it right’ and using ‘correct methodologies’. I’m beginning to think this accounts for some of the growing tyranny in schools and professional life of trackable and measurable outcomes, in which a somewhat warped idea of accountability seems to have replaced something more human and, dare I say it, more generous.
Generous and confident cultures perhaps accept more plurality? This is where I hope we can be headed – away from the idea of ‘best way’ and one way, to many ways of doing and being.
Because it’s all right for an older crock like me to grow into herself finally, but what about those coming after me – my own kids included. To use a well worn metaphor I’ve been a square peg in a round hole (without knowing it) and it’s taken decades to discover my square peg buddies.
But I can tell you that when one square peg (autistic) mets another – and when their square-pegged life notes are exchanged – something revelatory happens. You realise that what is needed (and always was) are more square holes. Simple. You may need to build them yourself – but that was it folks. No square holes, visible or otherwise.
Perhaps this is a newly useful if ancient metaphor after all? Let’s try it out.
So – I am after all a perfectly ‘normal’ (autistic) square peg. So is my friend. There are it seems many of us. SO many that we can’t count one another. Society functions on a round peg basis. We need square holes – in the same way that wheel chair users need wheels and ramps.
Square holes could perhaps stand as a visual metaphor for our access needs and the need for access tools to be shaped by us for us – because only we can think in square-pegged ways. If this were to be true and even useful, the steps involved might look like this.
Step one: experiencing a necessary touch of the ‘normals’ in which the penny drops. This world is not designed for me but this doesn’t mean that I am faulty. We need as many of of us out and signalling to one another as possible.
Step two: identifying the patterns of square peg thinkers and how they are disabled and mitigated against via systems which demand round-pegged conformity. This means dialogue about how our brains work in practice in ways we recognise and understand as our own.
Step three: designing, lobbying for & implementing square hole access tools and arrangements in schools and workplaces. Probably many small initiatives connecting where possible – perhaps leading to national programmes which are autistic led.
I put it out there – because growing into yourself is only the inner life hack. We need more autistic thinking to filter into the way we design education and work practices too. Having met some of my autistic square peg counterparts I can assure you that we’re pretty freaking amazing. You’ll want some of that in your school or organisation – if you’re smart you really, really will.