June 16, 2017 § Leave a comment
I take the entire inspiration for this post from a conversation with my friends and colleagues at ACAT in Berkeley, Brent White, Tanya Coffield and Laura Harrison.
Autistic leadership is both pioneering and not new. Paradoxes are what we do well, and while cultural advances and moves towards social justice bring forth a new cohort of autistic people who seek to lead in their respective fields, autistics have been quietly leading since the dawn of time.
Well, what we can say for sure is that autistics (including self-diagnosed) are now openly assuming leadership because we have to. The very justice we seek in social terms demands it and shapes it in a glorious (if somewhat gear crunching) symbiosis with the aforementioned cultural advancements. Though on all fronts we still have a long way to go.
And here is the rub, we recognise that autistic leadership is required, but we don’t yet know the shape and form it must take because we’re forging it right now on the anvils of our souls.
If that sounds melodramatic consider this; I’m often moved to use the canary in the cage analogy for my own work and those of other autistics I know. As a people we are vulnerable to environmental hazards – as leaders this can be magnified because we must process an extraordinary volume of fast flowing information and translate experience (both frankly energy-zapping in a way that can shut autistics right down) while carrying on responsibly as leadership demands.
We also carry trauma (a particular issue for us all but often complicated by late diagnosis), and can be ‘trigger magnets’, not only regarding our own histories but also that of others in our care. How to hold it all, and survive overwhelm and overload are in many senses not only about developing models but also about intense personal growth (insight based investigations on a virtually doctorate level and of the kind your average allistic would probably have no need for in the workplace). The workload can be incredible and almost impossible to log let alone recompense.
Yet as I suggest above, our leadership is not new. Not. One. Bit. It has simply not been recognised for what it is, or it has perhaps rather been sidelined and appropriated into the mainstream. We have and often continue to lead quietly and even unknowingly, while others seem to make the noise and get the attention. I bet it was ever thus.
But the point is that as a people we shouldn’t be lead by those who don’t fully understand us (a wider societal and historical problem that the individual must wrestle with in the workplace), also that autistic leadership should be acknowledged for what it is – the generator of so much that is good for the whole population and not just autistic people.
Perhaps the main impediment to autistic leadership is not that we must design it in our own image from first principles (though this is true as all existing visible models are allistic) – it is rather that we are not yet believed in as leaders.
This is what has to change in a wider sense, so that we can be freed to make our leadership models and create the support networks to sustain them.
I read so often about executive function for autistics, and the devastating impact of exposure to what I am beginning to call environmental hazards (the sensory world and allistic – socially embedded – expectation). Some autistic readers may feel that ideas about leadership might as well be beamed from the moon for all it has to do with their autistic reality. I have those days too and it’s hard not to admit defeat.
So I acknowledge my privilege while asserting that this is a hard and lengthy struggle for us all. Also that leadership comes in so many forms and can be so varied in scale. Recognition of what we do, on what ever level this may be, could be the start.
Self recognition may have to come first. Seeing others could be the inspiration, which is why I make myself visible. This is certainly how I began my journey with a trip to see my friends and mentors Brent White and Tanya Coffield back in 2015.
This post is for you. xx
April 25, 2017 § 17 Comments
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?
Of 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 to 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.
April 20, 2017 § 5 Comments
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!
March 27, 2017 § 13 Comments
Some autistics prefer person first language (though many sources suggest this is a significant minority), and some individuals and organisations use both person first and identity first language in an effort to compromise. I believe the latter is unhelpful in tackling stigma, while an insistence on person first language unwittingly perpetuates it.
This post takes as read the equal value of all human life in its infinite diversity, and the neurologically driven right to self-expression for us all. I won’t use functioning labels or talk about co-morbid conditions associated with but distinct from autism.
Autism is understood as a viable neurological difference with a distinct culture. Our contributions to the mainstream are significant but often overlooked. We face prejudice and barriers to access at all levels of social engagement and opportunity.
Blogging about autism sometimes feels like being suspended above a battleground on a rope bridge. The warring factions are often parents of autistic children and autistic adults. Like many other late diagnosed autistics I know, I am both. Other parties such as charities and research bodies (those not autistic led) tend to fall into the same camp as many non- autistic parents. In general, thought on language about and priorities for autism are driven by the non- autistic majority. There is still genuine discomfort in accepting identity first language and allowing the primacy of autistic voices in on the contemporary debates about autism which (crucially) lead policy, resources and research.
When I first dipped into the world of autistic blog writing (as my parent self) I was astonished to find so many adults writing. I hoovered up their words and gobbled them down. For something like four years I read everything I could by autistic adults to find out more about my child.
In the end I found myself. This in itself demonstrates the value of autistic voices – through each other we find ourselves and are coming to the fore.
Perhaps this is why I avoided conflicts (mainly). Occasionally I’d catch a bruise and glimpse the fray. I was a parent but I could see it all so clearly. The adults who wrote generously and eloquently about themselves were my child’s future – and I hope that now perhaps I can be part of the movement for change too.
I want to feel that my voice will count in this struggle for autistic voices to lead. Parents matter greatly ( I’m one – I know) but ultimately only autistics can speak from within about what it means to be autistic. This is bio/logically so.
Yet the spaces between us echo with arguments I can recite in my sleep. Person vs identity first language is a prime example. It is highly symbolic of the struggle for primacy but also an acknowledgement of autism as culture (as a viable neurological difference).
To each group the position on language seems clear. The other day I encountered a non-autistic person who thinks identity first language is rude to their autistic relative.
From this perspective using the word autistic denies the person and puts the focus on disability. (You can only really think this if you hold a negative view of autism and what it is to be an autistic person.)
This non-autistic person also thought it was okay to insist identity first language is insulting.
Personally, I think that was rude.
So the question is how to duck the ire and shift such barriers between us. Momentarily stumped I rewound my brain and located a now distant memory. And sure enough there was once a time when autistic was a harsh word to my ears too.
I reflect that it can sound abrasive (but only if you let it).
THAT IS THE SOUND OF STIGMA. And this is why it matters, and why we need to own it.
We have to get over the stigma to move beyond it. If enough of us use and reclaim the word we can make the kind of hard won advances we’ve witnessed for LGBTQ+ communities.
This is why we push the point and wear identity first as a badge of pride.
I’m not surprised that I’ve come to love the word autistic. No. But I can still (just about) retrace my journey.
Something happened to me as I grew closer to my community – as I grew into my autism – I found I no longer understood the person first position. I’m simply an autistic person at core. No add on autism, just autistic.
I’ve come so far in my travels that not using identity first language now seems the abrasive option. The with autism thing has become impossibly silly to my ears. As in, I think I’ll nip into town with my autism (hope I don’t lose it like those gloves I lost last week!) Foolish I know…
But that’s the trouble. Significant interest groups still experience the word autistic as too harsh and problematic.
I’m trying hard to understand all this as April approaches. I need to see a way through it. What I’d most like is progress through decent conversation. Don’t we need deep engagement with these ideas rather than huffy stand offs?
So as April comes around again I’ll get into brace position for #AutismAwareness, which in my experience is a month long assault course of mainly person first campaigning. Autistic voices work hard to insert their narratives – I’ve often joined in but this year I have no heart for it.
I want no part of this as an endless argument culminating in a mute or block on social media. It’s just too depressing.
So this April will be about the positive small changes close to home rather than the big picture out there. I’ve come an awfully long way but must own that it’s taken a very long time to get here. If I can make just one person stop and think this month it will be good enough for me.
December 3, 2016 § 5 Comments
Blogging is such a good way to let off steam and to disseminate information for autistic people.
Those of us newer to the game can quickly find our blogging forays replicated many times over in the online journey’s of other autistic adults. This is comforting.
Comforting in that we find ourselves reflected and validated, often after whole lifetime without it. There is a pattern to absorbing this difference it seems. Sometimes we just need to process and never mind the repetition.
Being a newbie I’m still learning. Unpicking the tangles created by not having known I am neurologically different in so many hidden ways.
These ways appear as tangled threads uncoiling and mutating into something bright and new.
Coordination is not a strength. Sewing can be a trial, often resulting in the sudden snag, mother to the multiple knot in thread. The kind which no matter how you prod it with your needle will never shift. There’s nothing to do but cut and start again.
We often live defensively because of our sensory and social challenges – but not knowing how we are different produces such tangles that the only thing to do is cut away. Lives disjointed and disrupted by not knowing.
Knowing is (conversely) to me a string of festive lights – a powerfully charged connecting cable. The pretty bulbs are of course ideas, or rather the illumination which comes with a knowledge that enables. They appear as a series at intervals, pulsing with life and good cheer.
The words that follow this train of thought are courage (that knowledge brings), and connection – not only is this circuit untangled and unbroken but it allows others to see you. Ha! Now I imagine a forest of fir trees in which some are blinking out coded messages – it’s getting to look a lot like Christmas (for which I apologise). But yes…
Beaming out and beaming in – it’s the kind of thread you would never dream of putting a blade to.
These are thoughts that rise and fall, and sometimes turn and twist as I consider all the voices and the often bewildering array of arguments about autism and neurodiversity.
The signalling taking place between autistic people is crucial to us staying whole and untangled. I have come to believe that for once it’s something the neuro-normative population can’t be part of.
More than this.
It’ s this signalling that rights us and sets us on our way. Neuro-normative culture is so pervasive that it threatens to block the light. We need good allies in our struggle for civil rights but…
It’s my autistic peers and mentors I turn to for a very particular kind of support.
November 23, 2016 § 7 Comments
I’m trying to untangle a conversation. It was a brain ache.
Complex new ideas were being put forward and it all took place on Twitter, which probably didn’t help. I mainly watched and processed as two individuals talked about difference vs disability.
Others joined in expressing first confusion and later distress.
It is indeed distressing not to understand in the context of autism, where misunderstanding can feel like the default position.
How to trust your voice? How to be sure that the more fluid and practiced voices are spouting a version of reality which is true to you? Aspects of what they say might sound familiar – and possibly correct (it will likely be correct for them but what about for you?)
How to hook it up and see if it fits in the moment? Trying to follow such a conversation can feel like the knitting needles clack without you moving them and the garment being made is too tight and full of holes. The wool is scratchy and your nerves are frayed.
The person being challenged in this conversation was autistic, the one challenging identified as neurodivergent unspecified (ND). But clearly not autistic.
I had the sinking sensation that the autistic person was being probed uncomfortably.
No, this person had no ill intention I’m sure. In their eyes they were looking for the “truth” – which is often shorthand for; agree with me and see it my way.
Treating an autistic person like this is an example of not listening. And yet again the autistic person is denied validation and told that they are wrong. They are made to justify their position and told that it is wrong.
The non-autistic person doesn’t understand the position being taken – therefore the autistic person must be wrong because it is too difficult to take a step sideways and ask – how is it really in your world.
This person’s starting point was that they were ND too with the assumption it seemed that we should therefore all be singing from the same hymn sheet. (Personally this is my ongoing frustration with the new terminology we are all currently adopting).
And for a period my timeline was dominated by the ND unspecified person pressing the autistic person on their position. With the suggestion of ableism rising to the surface though quickly retracted.
My only contribution was to ask for respect and attentive listening but this remained unacknowledged.
I am deeply discomforted by this experience and ask is it any wonder that autistic people often fear to speak and that autism is associated with mutism in it’s various forms.
Such experiences confirm that the term ND doesn’t guarantee safe spaces and isn’t always a useful term.
I have also found trusted and willing ears on my many travels – but I wish it wasn’t this difficult in general terms. That autistic people could be encouraged (especially within the growing neurodivergent communities) to forge an identity and to self lead.
It’s not asking much and is actually a basic right.
No one wants the scratchy jumper that doesn’t fit.