How about you learn some ‘autistic’ instead of expecting us to conform?

Time for Change
Photo by Alexas Fotos on Pexels.com

That’s quite a provocative thing to say, isn’t it?

Well, lets start a conversation. The Neurodiverse amongst us are willing to teach you!

Here’s another short piece I wrote for Arts Pro recently.

https://www.artsprofessional.co.uk/magazine/328/feature/learning-autistic

Learning ‘autistic’

Autism should be seen as a cultural difference rather than an impairment, says Hayley Williams-Hindle.

I’ve just returned from a lovely weekend in Derbyshire. Fifty strangers, all mums, of mixed ages, ethnicity and sexuality, and each of us autistic. The group aesthetic was typically ‘neurodiverse’: rainbow-striped and comfort clothes, clothes that cuddle or spark joy rather than high fashion. Amongst us were engineers, mathematicians, IT workers, musicians, a driving instructor, an HR specialist. Some there were unable to work due to mobility disorders, mental ill health, or weak executive functioning skills (which allow us to plan and execute tasks), and many others were struggling to find their niche in workplaces that rarely recognise the potential economic benefits of brain difference. (https://hbr.org/2017/05/neurodiversity-as-a-competitive-advantage)

We laughed, drank, smoked, sat alongside each other in silence and discussed controversial topics – politics and religion – with cooperation and passion. It sounds unremarkable, perhaps, and yet, the primary diagnostic criteria for autism (https://www.psychiatry.org/psychiatrists/practice/dsm) includes ‘persistent difficulties with social communication and social interaction’ so the success of such a gathering is intriguing. 

Double empathy trouble

Recent studies have validated what autistics have known all along: a double empathy problem exists. (https://kar.kent.ac.uk/62639/1/Double%20empathy%20problem.pdf) In other words, the difficulties that define autism happen particularly when communication is between neurodiverse and neurotypical individuals, but not when it is within groups of all neurotypical or all autistic people. From this perspective, the deficit is not wholly autistic; we may not ever be fluent in your brand of human, but most often you’ve not even considered learning ours. Approximately one in 60 people are autistic but, as is so often the case, the narrative is defined by the majority. (https://en.wikipedia.org/wiki/Epidemiology_of_autism)

Humans have retro-fitted ape brains with long-standing instincts for in-group tribalism, and the sophistication we display in embracing initiatives for inclusion and diversity has developed in spite of those instincts. Recognising when our personal differences are cultural differences dampens our fear of the unknown and keeps our curiosity high. Think of how, for instance, we Brits are tribal about our respect for the sanctity of a queue (http://www.bbc.com/future/story/20170320-we-hate-to-admit-it-but-brits-arent-the-best-at-queuing) and the correct way to make a cup of tea. Heaven forbid, the Americans boil water in a microwave.

Autism too can be understood as a cultural difference. There is a hidden curriculum (https://purehost.bath.ac.uk/ws/files/120697864/EJSNE_Final_Oct_14.pdf) of social information that is not directly taught but that we assume everybody knows; it’s this we have in mind whenever say things like “it’s just common sense”, “that’s obvious” or “I shouldn’t have to tell you this”. The autistic cultural code is defined primarily by an absence of such rules. You may talk to me and not once catch my eye, and I won’t assume you are rude or dishonest, as most may – 68% of hiring managers say lack of eye contact is the biggest mistake at interview (http://press.careerbuilder.com/2018-02-22-The-Most-Unusual-Interview-Mistakes-and-Biggest-Body-Language-Mishaps-According-to-Annual-CareerBuilder-Survey but for autistic people, that gaze can be confusing, intense and acutely uncomfortable. If you make an assertion that others think is blunt or rude, I am more likely to give you the benefit of the doubt and be curious. 

Not understanding unstated rules or customs can make the world a confusing and frightening place for autistic people, making those of us who are not neurologically wired to automatically ‘get it’ feel isolated. But the other side of the coin is that autism is neurological egalitarianism. Autistic people hold less intrinsic bias against others and, like other neurodiverse populations (Dyspraxia, Dyslexia, ADHD, Dyscalculia, Tourettes) are more likely to operate from values of fairness and justice, rather than hierarchy and unquestioned loyalty. If you want to build diverse work teams, it’s a great idea to have a couple of autistic people on your hiring panels. 

Subjectivity

There is sound reason that autism is considered a disability. Sensory differences and anxiety make life very difficult for many. But let’s be clear: learning disability, though often co-occurring, is not autism. Arguments like Tom Clements’ (https://www.theguardian.com/commentisfree/2019/aug/26/autism-neurodiversity-severe) that suggest that the ‘neurodiversity movement’ is not inclusive of autistic people with learning disabilities conflate two separate issues. Non-verbal autistics also have much to contribute to this discourse.

A diagnosis is a luxury; it isn’t essential for neurodiverse communities to extend a welcome to you. Online and in-person autistic spaces provide an unofficial cultural translation club to parse social meaning for each other. Although heritability is not disputed and austistic genetic markers are being identified, diagnostic criteria are still unhelpfully based on behavioural observations. In the UK, the ignorance around presentation, especially in females, and the lack of affordable, available diagnostic services leaves many people stranded and feeling like aliens in a foreign land – Morks with no Mindys to guide us. 

As a sector, we are getting better at making adjustments for neuro-disability, as is our legal obligation under the Equalities Act. Many venues now reliably offer ‘relaxed’ performances with raised lights and breakout spaces. There are also more neurodiverse artists being programmed. Frustration remains though; we’re not all artists. Many of us are administrators, marketing specialists, bookers, producers, technicians, customer service professionals, and all the other vital roles that go to making a public event a success – it’s these people who are rarely part of the conversation about autistic inclusion within our sector. Commitment to properly representative workforces requires joined-up thinking across all teams and stakeholders. The strides made in public and artist engagement ring a little hollow otherwise.  

The fact that, even in 2019, 86% of diagnosed autistic college graduates are unemployed, (https://www.autism.org.uk/get-involved/media-centre/news/2016-10-27-employment-gap.aspx) many of whom want cultural sector jobs, presents us with an immediate challenge to embrace. Learning ‘autistic’ is a great place to start. 

We may not ever be fluent in your brand of human, but most often you’ve not even considered learning ours.

Fighting nice

'Would you like some tea?' 'No.' - Anarchy in the UK.

I’ve written a lot about anger recently. 8000 words in fact; on the neurobiological and evolutionary advantages of this most controversial of emotions. Since I pressed send on those two articles there’s been a lot of happenings to challenge my empirical confidence and I reckon there’s value enough in that reflection to commit to virtual paper here. 

We’re an angry bunch at the moment aren’t we?  Like a room full of toddlers at the end of a birthday party we’re emotional, exhausted, tear and drink stained, and either high on sugar and e-numbers or furiously upset that our balloon has been stamped on.  Then there’s the weary elders gathered at the edges who saw the fallout coming and are dreading home time. 

Post election pain

What a time to live in. This election and the political ideas that surround it, as well as the underhand tactics used to win it have really served to highlight the inhabitants of our tiny island quite distinctly into two factions of apparently polarised ideals, each side as outraged at the other.  But i’ll stop you there if you thought this was going to be a defense of honest game play over dirty tactics. I’m unashamedly left of centre and a ‘straight up’ kind of person myself, but enough has been written about the evil genius of Dominic Cummings already. You don’t need to hear more dissection here – it’s frustratingly immaterial now that the Brexit capitalist dream train is right on track. 

Ok i’ve had my dig. But really – let’s stay curious about this. A lot of people are openly angry and upset – feeling a genuine sense of grief about the current state of things, and many more are feeling distinctly uncomfortable about being surrounded by this heightened feeling. Social media is full of extraordinary emotional heat and its tipping over into public protests and into some brazen demonstrations of racism and prejudice. It’s unsettling to witness and experience. For those who are voicing their anger though there’s an important discharge of helplessness and outrage and fear – at the poor sportsmanship as well as the political ideas and also, let’s be honest here, of their own ignorance. 

Learning to Listen to each other

I’m a seasoned parent now – four sons aged 3 through 13, two with neuro-developmental conditions whose nuanced and specialist parenting needs have ‘learned me through wizening experience. It’s counter-intuitive, but the experts reassure us that we don’t always need to break up a disagreement too quick. Neither should we insist little ones instantly share. Negotiation and conflict resolution are life skills that we work out by doing – by recognising that when we cant use bullying tactics to win, we are much more likely to get a better appreciation of each other’s viewpoint and an equitable resolution by hashing it out. I think now our northern mum had the best idea when she would shut my sister and I in a room together until we resolved things, rather than taking the more immediately pacifist approach of separating us or telling us to change the subject and agree to disagree (Dad was more of a ‘bash their heads together’ kind of parent so I think we’ll stick with mum on this one).

I realise it’s considered rather gauche, in England at least, to let the stiff upper lip wobble, but this feels like a coming of age sort of rage to me. Vital to our collective growing up and political maturity. I’m not advocating violence of any kind here nor name calling. Calling, instead, to account and condemning the gloating needn’t mean that we break up the stand off too soon. This kind of transitional anger is a positive sign of people recognising their needs and it would do us well, I believe, to hear and validate it rather than suppress it. Anger is a motivating emotion and much healthier than apathy – lets just hunker down with the collective gin bottle if needs be to weather it. 

I’d like to see a grown up conversation about the anger that we’re all feeling and experiencing now, in the last days of 2019. It would be a backward step to banish ourselves to separate spaces to seethe and pretend that the big stuff doesn’t matter anymore because it does. How about we decide instead to set some ground rules for engagement and keep talking? Because that’s the only way any of us will come out of this any less broken. 

White Flags today

house work
building works

Today i’m gathering in my raw torn stretching edges and folding into myself. 

It’s been a harrowing week – the kinds of days that push every neuron into overdrive. Reaching for the right information, fitting it into context, battling with the extremes of these visceral reactions; of a brain in relentless overdrive.  

Some macro context to my angst won’t surprise anyone; Systemic changes are being cemented, via an elected group of humans whose values are entirely different from mine. Like very many people in the UK and beyond, i’m frightened to see what that world view, given licence, will raise into reality from the germs of the human fear that fomented it. 

Building change

There’s personal stressors too. We’re having some major building work done on our home, and the excitement of diggers and welding sparks is giving way now to anxiety over how i’m going to keep the 6 of us (plus cats!) fed and bathed and warm in the middle of a building site in the leafy midlands. Middle class angst telling a grain of the truth of the every days of displaced and bombed out mums in same worlds. My bricks going up while theirs come down.  

It’s been an exciting year, a year of learning and community within my small cohort of learners. Thrown together as we were by alignment of stars and application and with the architecture of bonding built into the programme. I’ve learned this; All healing happens in community and without it to nest the self in, all the best theory is worthless. Interaction and relation is where the new learnings and the new safety happens.

Risky Strategies

Still there’s risk of the profoundest kind in that necessity of communion, and my muscles and brain recoil from it as much as my bones long for it. Sometimes the best thing to do is just screw up your eyes and take a deep breath and full speed ahead though right? That’s been my high risk strategy throughout 2019. Sick of the stagnation of healthy opportunity and labouring through misunderstanding after presumption i’ve run headlong into every new possible; my legs wheeling round like road runner and my body at 45 degrees to the floor in permanent dream pose. Perhaps it was all a mirage. Lots of energy has been expended and lots of cheerleading from the sidelines heard but my landscape hasn’t changed any. I’m not yet kicking up much dust or moving ground and I don’t know where my head should belong.

I am sick, still, of waiting for valued productivity to start and opportunity to move me forward like one of those airport travelators that seems to take my contemporaries gliding through vast corridors to a waiting lift off – still that pitied fool that didn’t know where to get on, now stuck walking alongside and dragging my baggage with broken wheels. 

This week it’s all too much stretch. Too much pain and only howls to explain it. I can’t afford to die again so rebirth will have to wait a while. 

Wastefulness and perspective

house bricks

Post election pain

Today was a really strange mood in central London, the morning of reckoning after the general election kept the Conservatives in power. And on the train there and back too; sombre, reflective, less bustling and brash perhaps.

It felt a bit like those who voted for more capitalism, in the city where it’s spoils are so vivid in contrast, were keeping their heads down, while the other half were silent in grief. The waves of anger not yet gathered.

Shifting perspectives

I went down today to oversee collection of a used kitchen and furniture we’ve bought for the house. Its coming out of an incredibly luxurious flat- a second home rarely used – and was otherwise, most of it, going to be tipped because it was ‘less hassle’ that way.

Today turned out to be a shit show I won’t go into here (contractors / misinformation / people throwing their weight around) but what struck me again as it often does was how compassion doesn’t work in the abstract.

The sofa we’d paid for was too big to fit through the door. I was told I could either pay for a winch to get it out of the window (£1000 please) or cut it to get it down the stairs. Asking for a proportional refund to reflect that I couldn’t get the item I had paid for out of the flat I was told to ‘take it or leave it’. They were only prepared to refund the entire amount, in which case all of it would just be thrown away; Cut up so that it would fit in a skip for easiest transport. It wasn’t worth the hassle to sort it I’m told, and the home full of furniture and carpets and curtains -enough for two homes and carpet for several – would just be taken to the tip. Clearly they didn’t need the significant amount £ id already paid to take it along with the kitchen. This was no idle threat.

Priorities

About to argue back; ‘surely they remembered having to winch in this large piece of furniture through the fourth floor window when they bought it?’ I quickly realised that to be a pointless line of challenge. The owners clearly had no clue, and less care how it got there or at what cost. I guess when you have got that level of wealth you just say ‘I want that and I want it there’ and you leave someone else to sort out the detail and you just pay the astonishing bill.

To be clear those carpets and furnishings have already been allocated to local charitable organisations who will gift them on to people who are vulnerably housed in Warwickshire. The kitchen and some furniture we plan to use ourselves.

Time is Money

Time really is money isn’t it? And damn the precious earth resource and real value to others of the items we are prepared to throw away because it’s too much hassle to bother about and because we just fancy something new. The contractors, it won’t be a surprise to hear, confirmed that they have cleared many a luxurious hotel or apartment. Highest quality furnishings unceremoniously ripped out and just taken for rubbish.

That really does make me angry. People have wept at the thought of finally having a bit of carpet over the bare concrete floor in their home. Here In the U.K. A ‘bit of healthy competition, market economy, greed, in order to get the economy going right? Disparities as wide as this are not healthy or reasonable or proportionate.

One upside to this election environment is that I feel as though I have a tiny bit more insight into human behaviour, the kind of insight that makes life easier for me to navigate. It’s not insight that fills me with any hope or comfort though. It’s replacing Naïveté with fear.

ADHD Wolves

Grey Wolf (Canis lupus) Stalks Forward – captive animal

This morning I was supposed to be going to a conference at the Wellcom in London but indecision over spending the cash to get there and other responsibilities sent me over the edge. Bloody waste of a morning. So instead I hid in bed and wrote.

The conditions for functional coping are so nuanced, so precise, so delicately engineered. This is tolerance of the most niche kind; personalised, individual. I’m in daily hostage to my neurochemicals.

ADHD in action, or is that inaction?

Everyday things are rarely enough to make systems begin. The sure windup of oiled machinery rarely gains its own unchallenged momentum in this ADHD mind. Rote learned Sensible ideas do raise a rational response. But, lacking sufficiency of regular neuro-fuel, this brain is now trigger happy on adrenaline; conditioned by parental and school frustration to ‘Just Do It!’ To ‘stop daydreaming’ .

I tell myself ‘Make a calm choice and follow it through, yeah?’ But there’s importance here. There are consequences and other people. And just as night follows day, the indecision that comes standard with this self determined action potential gives a generous slug of the fight/flight ‘drug’ to my brain highways. Flooded thus I’m Driven and galvanised (and brilliant in an emergency!) and ideas and connections come thick and fast. All the world seems possible. Things are happening! I’m doing it!

Adrenaline junkie

It’s a thrilling ride. But I need wolves to chase me – to flee from. I Need need, to focus the adrenaline. Without it – unchased and unrequired – I tip quickly into a vertical free fall of anxiety. Hyper aroused and hyper alert to every twitch and light and sound. The crash is swift and brutal. And the critical thinking functions – of balance, of reason, of consideration – are subsumed by survival instinct. Alive but paralysed. Inert, voiceless, scarcely daring breath. The wolves were there all along – but they weren’t chasing, they were hidden; waiting to tear apart and devour the spoils of that impulse to creativity. The ideas and connections slip away back into the recesses, leaving me with little but a memory of how stars are made, and a surer knowledge that functional usefulness and brilliance alike are trapped in a maze of mirrors and menace.

Fuck it.

Life and times of a reluctant actor

Life is Beautiful film still

I was recently challenged on a social media round robin to name my favourite film and say why. There was no hesitation. It had to be Benigni’s Italian language 1997 ‘Life is Beautiful’. A film at the same time so heart-breakingly joyful and devastating that I could only bear to watch it once, but still the memory of that viewing has etched in a way I don’t think will ever leave me. 

There’s a lot I could say about why it’s brilliant, but the scene that had me holding my breath is where the young Jewish child, held captive in the concentration camp with his brilliantly inventive father, is coached to join in with a birthday party that the German children of the camp guards are enjoying.

Naivete

He’s entirely innocent of the context and believes it a game – a competition to win a Tank ride, if only he follows the rules carefully. In this way the boy enters the grotesquely normal scene of merriment and feeds himself on so many cakes and sandwiches that his stomach hasn’t had in months. We hold our breath along with the father. Knowing that these outlandish risks are necessary for the survival of the person, but that there is peril in every move if he acts wrong. Eventually we breathe in relief, that scene ends and he goes on, undetected. His innocence at once a risk and a protection. 

It moved me when I watched it and it moves me now. Perhaps it’s this; I am both that father and his son. The doer and the watcher, the teacher and the taught. Autistic me inserting myself into everyday gatherings with a scripted set of rules. Masking the mechanics of it, praying not to be revealed an other. Over time I know ive got these lines down pat and I can risk some improvising. Not much you understand, but a few off the cuff actions and replies, here and there, getting a bit braver. Trying it out.

The drink is the undoing. Not in itself – i’m not paralytic ever – but the siren call of ease from attention is strong. Ease from watchfulness and vigilance and throat constricting. Choking then only on crumbs of nicety (I suspect that most cake is made with sweetener).  

Facilitating difference

I took part recently in a friendly group exercise that came at the end of a training day. There were 4 of us in our group, all kindly oriented (no malice here). The trainer played some jolly music and the task we were given was to copy each others’ movements. We’d take it in turns to mirror each others actions and the exercise would make us all release endorphins and bond over our copying. It was of course supposed to be a nice thing to do. Well irony my old friend you mock me once again.

My turn came to lead without rules. But this was all wrong. I’m the mirrorer, not the mirrored. I’m the copier, not the copied.
The attention was too meta. Too breathtaking. I voiced my discomfort. ‘Oh I hate this’ echoed the group. I screwed up my eyes and tried again. ‘I feel like i’m being mocked’ they replied.

From there there was no going back. What had to happen, happened, and the shutdown took over. Brain hijack to re-set. Voice, limb control, sacrificed for a while as the electrics and chemicals raced then settled down. It wasn’t so bad this time though, and I’m not more scarred. (I had shelter in a person who knew, and a room primed not to be afraid of other)

Dreaming free

I often dream that i’m naked as I think many do. Trying to run. Gasping, wide eyed, looking over my shoulder. Aware of my exposure and seeking cover at all cost. Its textbook anxiety stuff i’m sure. I think its also quite a literal reflection on exposure of self. But this week’s episode took a break from horror story backdrops of dimly lit streets and shadowy trees. This time, my dream had me in Tesco of all places, in my birthday suit at the fresh produce section (perhaps id done a big shop earlier that needed mental processing? Who knows. I’m sniggering though at my subconscious’ smut. Melons didn’t feature) I’ll add, dream me still wasn’t comfortable; clothes are always best in the fruit and veg aisle. But I wasn’t running away breathless this time, and the other shoppers were trying hard to be British about it, sideways glances and a couple of raised eyebrows the worst of it. That feels like progress! After a time, dream me grabbed a handily placed dream towel and wrapped it around so that I only looked odd, and not rudely inappropriate.

It’s very exposing is living. But i’m learning to breathe through the fear of being revealed. I’ve survived this time without running. Without hiding. This is ok I think it’s ok. I may yet get thrown out of the party, but still i’ll keep my life. 

Growth Mindset in a Neurodiverse mind

growth mindset

Moving Mountains

There is much talk of the need to have a Growth Mindset in order to learn. Dr Dwecks’ research into fixed and growth mindsets is 30 years old but still as current as ever; We can move metaphorical mountains if only we believe that we can. We need to believe that we are capable of doing a thing as the first step to being able to actively learn to do it. 

The theory goes that we can identify a Fixed Mindset in ourselves when we say that ‘if someone else on my team can do that, then so can I’. Or when we say that we worry that people are judging our abilities. Perhaps it is true that these adopted statements betray our beliefs; that we aren’t willing to test our own potential independent of others, or that we think that there is an acceptable level of ability that we must reach; we are judged for our attainment and not for our effort. 

Beliefs or systemic issues?

Its a good idea for sure, to identify our limiting beliefs, as a starting point to be able to think about what it might be like to put those aside and be free of our own tyranny when we approach learning a new skill. 

But here’s the thing. I’m worried that this kind of cheer-leading coaching conversation (others coaching or talking ourselves up) misses some vital context. What if we know that, in our job, we are indeed being judged by our attainment and not our effort? There is an unapologetic culture of performance related pay in many industries. Similarly, once we’re past school days we’re rarely credited for effort alone (and even then, reward for effort is courageously given by teachers in defiance of the prevailing results bias of educational policy).

Measuring up

Perhaps we take a measure of learning against a person who has achieved the competency we desire – because we can then get an idea of the kind of commitment and focus that might be needed in order to become good. A ball park. Do I have sufficient drive or motivation to apply energy to learning this thing now? Copying is how we learn. Noticing allows us to determine rules of engagement and belonging. That seems not to be a fixed mindset, to me, but a pragmatic one.

I am what they term neuro-diverse, specifically, i’m autistic. I know that my own progress to date was not hindered for lack of a growth mindset. Not for lack of believing that something is possible or that even I might be capable of it, if only I could grasp the crux of it. There’s something else going on here. Neurological differences at the most primitive levels which have implications for our engagement with the world. Autistic people (there are a lot of us, perhaps even 1 in 60. Male and Female) are very often left as strangers in our own land, given singular responsibility for navigating what amount to breathtaking practical and cultural differences, and without a rule book to do it. 

If you coach a fly in the brand of one dimensional growth mindset that says that you need to believe you can do it, then that fly is going to keep on going at that fixed glass pane. Observing, we can see that actual progression is going to demand something different. Its going to take someone else to open the window for the little guy, or shoo him around a different way. He’s going to get one serious headache if he keeps on with that determined forward focus. 

Input needed…

Indeed my own frustrations have been around wanting to achieve. Wanting to grow, knowing it should be possible – that I do not lack intelligence – but finding myself consistently held up by that glass barrier (never yet mind the ceiling!) that I couldn’t see or understand. A communication style difference? A dearth of helpful feedback that might help me to refine strategy or technique – or to judge on that evidence that the issue is the others’ to correct. This difference is not an immediately obvious one to be categorised on a conscious level. But you’d better believe your subconscious has sniffed it out, sooner even than I can open my mouth to speak (there’s studies).

If that neuro-difference isn’t factored in to our coaching conversations then any reflection on a stuck-ness is missing so much information that might allow for growth around a problem where we cannot go through. Perhaps i’m missing the point here. We don’t have to actually move the mountain, its just as valid to step sideways. 

If we ignore the impact of such societal barriers to ‘getting ahead’, then talk of mindset is meaningful in only the top eschelons of priviledge and leadership. Cheerlead me all you can and i’ll thank you for your kind thoughts and wishes. But until someone opens that damn window i’m struggling to fly anywhere.