Am I subversive? An autistic person navigates the Open Floor and wonders how inclusive we really are

I was described as ‘subversive’ in the Open Floor mentor group the other day. It set me thinking about all the ways in which autistic modes of being are constantly interpreted / misinterpreted in allistic1 culture – often so thoroughly and insistently that eventually we as autistic people incorporate the interpretation as reality. Throughout my life I’ve repeatedly been referred to ‘subversive’, ‘anarchic’, ‘rebellious’ and other variations on that theme. Sometimes it has been with affection; other times it has come with a backwash of judgement and disapproval. Up to now, I’ve pretty much taken it on and defended it, as if it belonged to me, but there comes a moment when a tipping point is reached. Something’s got to fall off the top of the heap.

To me, subversive suggests an intention to subvert. But I’m actually not interested in disruption for its own sake. What you’re witnessing if you see me engage with Open Floor is just an autistic person engaging with Open Floor. I am really searching out ways of understanding and offering this work that feel authentic and meaningful for me, ways of being in it, both as a praxis and as a community of practitioners, that feel nourishing and supportive rather than dysregulating and overwhelming. As someone autistic, I often know only vaguely and two beats behind everyone else what is the ‘normal’ (read ‘allistic’) and expected response; and even then it’s a kind of intellectual apprehension; it doesn’t register on my internal compass. I seldom have an intrinsic sense of the ‘rightness’ of it being the way allistic people presume it’s going to be. So I am always wobbling on the pointy edge of producing what you expect me to produce or allowing the expression of what naturally wants to push through to the surface.

It’s challenging to be in a curriculum which is so fond of referring to itself as that, and in which the language of ‘teaching’ and ‘student’ is so valorised. Autistic people are most often our own teachers. We will research every angle, but in order truly to know, we have to take the whole thing apart and reinvent it, generally in wild, strange and unanticipated ways. We take nothing as given. As one of my autistic clients says, ‘It’s never enough to be told; I have to go through it myself to know for certain.’ This is why innovators and ground-breakers – those people who revise cultural, scientific and artistic understandings – are often autistic. Yet while the results may be revolutionary, the autistic person is usually far more absorbed in the stuff of their specialism than they are interested in what society makes of their break-through productions.2

It felt really, really good to shuck off ‘subversive’ ­and reframe it as what it actually is. And I’m grateful that the mentor group is the kind of receptive space where it feels possible to up-end perceptions in this way, knowing that different realities can be received and held. Not all spaces are like this.

I’d love for there to be more genuine inclusion on the Open Floor. My experience is that while there’s a wish and a willingness to include up to a point, it doesn’t extend far enough to motivate most of those who organise and facilitate actually to do things differently where this entails some disruption to their own habits and preferences. You can be included if you’re willing to make all the accommodations yourself. If you’re unable to stand, for instance, (I can’t for long), you can sit down during the standing circle, but – as if you don’t actually exist in the group – there will still be a standing circle.

It has been an enormous struggle – over many years of remaining upright through pain, fatigue and dizzy-faintness – for me to be able to stand up (sit down) for myself in this simple way on the dance floor. It takes A LOT of self-confidence to offer yourself as the big sore thumb in a large international workshop with a high-profile teacher who has not made any enquiry into the special needs of individual dancers on the floor. Make no mistake about it, this is a powerful statement. A teacher who is more involved in control than in listening and receiving may judge you as lazy, uncooperative, challenging, or, oh yes, subversive. Even in a small workshop with a relatively unknown facilitator, power dynamics are surely in play. Many of the people we as facilitators hold in our dance spaces are drawn to movement practice for reasons that make them vulnerable in multiple ways. They need our help in listening to their authentic needs and in holding their genuine boundaries. We have to take care that we are not only talking the good talk but are really engaged in helping them to do this work. For all of us, the extent to which we are managing to offer this kind of supportive inclusivity must be an ongoing open question.

It’s not that I haven’t received help like this – I have, and I’m super-, heart expandingly-grateful – but it was over a decade before I was able to make known that I needed it. It was like the crackling of glacial surfaces and an ice age coming to an end. We are all growing older, wiser and more decrepid, and as a result some of our spaces (I’m speaking here of the Five Rhythms and all of its children, of which Open Floor is the youngest) are becoming kinder, more open-minded, less attached to the delivery of cherished teachings and more responsive to the needs of the dancers in the room. I feel so anyway. I hope so.

I’m in another mentor group. We are seven autistic women. I told the group my ‘subversive’ story. These were a couple of the responses:

I totally recognise that. I’m often described as awkward, contrary, rebellious, perverse or non-conformist. Some are disapproving and others admiring, even envious. I’ve kind of taken on that identity with pride, but reframing it now, it’s all about our intention being misconstrued. I never set out to be rebellious, but I guess I’ve taken it on because I was being seen that way. There have been more than a few times when I wanted to say (and sometimes have said), ‘Actually that’s not my intention at all.’

I recognise this only too well. I get misinterpreted by a certain kind of person who thinks that my desire to play with concepts and excitedly share information is trying to prove I’m cleverer than them and that my willingness to do things that frighten other people is me being ambitious and having ideas ‘above my station’. I had a supervisor who was a classic example of this. I’m not ambitious in the way he believed. My motivation is around services for clients, or my desire to learn new things, or be creative, not to empire-build or grab opportunities for personal promotion.

It seems that it’s difficult for the neuro-majority to really ‘get’ that the way they process and perceive things is only one possible way of processing and perceiving. If you want to make an autistic person incandescent with rage, try telling them, ‘We’re all on the spectrum.’ We are not. People who are autistic – and only people who are autistic ­– are on the autism spectrum.3 Maybe the recital of the dread sentence is well intended; presumably it’s a misguided attempt at empathy; the problem is that it whitewashes and belittles the very real and unique difficulties that autistic people routinely face in allistic society. As one autistic woman commented, ‘You wouldn’t go up to someone in a wheelchair and tell them how you sprained your ankle once so you know how they feel, or say to someone with Alzheimer’s that you are really forgetful too.’

As I feel for an end point to this writing, it strikes me that ‘subversive’ as a descriptor is really a way of excluding. What ‘subverts’ is the thing that the school or the teacher or the teachings or the practice container is not yet elastic or expansive enough to encompass. By bringing our difference, our unexpectedness, the uniqueness of our perceptions, our left-field, autistic, one-directional determination and ‘cussedness’, together with our absolute commitment to honesty and authenticity, we can challenge the container to grow. And if it’s a good container – a vital, generative, evolving one – it will respond.

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1. Allistic: ‘non-autistic’. This is a good article about the language of autistic and other neurologies.

2. Steve Silberman’s acclaimed book Neurotribes is a a brilliant discussion of this.

3. I like this – very autistic – explanation of the autism spectrum.

Tissue paper and glass

I once heard an interview with a hypermobile contortionist whose act involved fitting himself into tiny boxes.1 He explained that he had learnt how to dislocate and relocate his joints at will when he was a child. This seems to me a very clever neurological adaptation, because in my experience dislocating is like touching fire. I’m out of that place much faster than I can think. My body knows where its parts are meant to be, even if it’s sometimes a bit rubbish at keeping them there.

Three days ago, I made an awkward movement while adjusting my left foot in ekapada sirsasana. There was a big clunk on the right side that felt an awful lot like my SI joint subluxing. The immediate feeling was a kind of suspension: a long second or two of grace before sensation surged in, and with sensation testing and assessing, seeing what I could move and working it out. Grace addled with fear really. I know those clunks. I know what they mean. I know that pain and immobility arrive like a caravanserai, slowly, throughout the day, one camel at a time.

Photo on 24-12-2015 at 21.10 10.39.00What’s difficult about writing for a public space – so difficult that I rarely do it – is creating form and structure. Form and structure are really protective distance – between me in the nakedness of the experience and the person reading about it. I’d much rather sketch, in a few scant lines, but going straight in, deep. I’d rather silk spooling out of spinnerets, easy, casual, letting myself down, winding myself up, and down again. But it’s exposing.

For the rest of the day I felt skinless. I could hardly bear the shiver of feeling. Sounds were acute, grazing, shocking. Inside was grey, grainy, gauzy, like the spaces through a very old net curtain … like winter trees scribbling across the sky, cross-hatched and mobile. Still, now, that membraneous feeling comes and goes. It’s a bit like having very bad flu: tiny sensations are enormously expanded, clean sheets like an iceberg; turning over, the revolving of a planet from night into day.

At present I’m somewhat hobbling. My right piriformis is in spasm, and I’m starting to think my right foot problem may be a stress fracture. I often feel as if I’m made out of tissue paper and glass. But when I’m in the thick of practice – at the deep beating heart of it – I feel melted into a fluidity in which all my parts coalesce. There’s a sense of resolving into an entity that isn’t about surfaces but coheres from the centre outwards.

I really believe in moving, no matter what. The more limited I am, the more important it feels to me to get up and move what’s here. As I get older, I see how well this has served me over the years. For one thing, I’ve seen what happens to hypermobile people when we don’t move. It isn’t, for the most, part a pretty picture. More significantly, sites of restriction, injury, places where continuing feels utterly impossible … these have been the loci of the most fundamental repatterning for me. This sort of recalibration happens in my body but not just to my body. It’s a whole-person event.

Practising, for me, isn’t about pounding away – same old, same old. It’s about feeling into the subtle differences, becoming awake to the more functional in the new. In my personal experience, occasional injury is inevitable when I’m practising on this edge. Partly because I have Ehlers Danlos, but more fundamentally because, by definition, I’m working – out of a secure foundation of established practice – into a territory where I don’t totally know. It’s risky.

This hypermobile body teaches me about impermanence and the inherent fragility of that. It’s brave to step up and inhabit this precariousness, but there’s also a kind of freedom in living there.

1. The contortionist is Captain Frodo. You can read an interview with him here. He also sounds a tiny bit autistic.

Attention Autism: a strange piece of writing about schools (special and not), Open Floor and Thoracic Ring Approach, sharks, love, trust, process and not having a conclusion yet

All this year I’m dancing one Saturday a month in a special school. As soon as I walk through the door, something about being here allows me to exhale. In the classroom where I got changed yesterday, there was an A4 print-out from Attention Autism tacked up on a cupboard. (I googled Attention Autism this morning and discovered the rather wonderful Gina Davies, a speech and language therapist who offers training to carers and professionals working with autistic children.) The A4 in the classroom was a series of reminders for group leaders about how to be with an autistic child – don’t insist on eye contact, if you want focus make sure there’s no background noise … The special school is the only environment I’ve ever been in where my presence as an autistic person is overtly acknowledged. Everywhere else, if I wanted to be taken into account, I’ve had to explain who and what I am and advocate for my difference. It’s as if in the special school I could just settle. Just breathe and settle.

I’m in two ongoing processes at present. One is the year-long Open Floor group which is dancing in the special school’s hall and is facilitated by Sue Rickards. We’re focusing on wishes, hopes and dreams, or at least it says so on the tin. The focus that’s emerging for me is just being, which could be, in a way, the anithesis of a wish / hope / dream: not the leap to somewhere else but what’s right here, right now. It’s a softening, a dissolving; subtly tuning in, accepting, trusting.

Yesterday morning, the invitation was to do something differently, so in the hot middle of things, I left the dancefloor and made a cup of tea. I am not someone who just leaves in the hot middle and makes a cup of tea. Or, at any rate, I have not been that person. Then I came back in and sat in a chair. Sat in a chair, for god’s sake! Sat in it. For the rest of the dance. Radical acts! It wasn’t an old fuck-you!; it was a new attention to the quiet impulses of my body and a readiness to respond to them through simple actions. And at the end of it all, I arrived in a kind of embodied presence I don’t think I’ve ever experienced before: full, unsheltered, without pulling or distortion, expansive and at rest.

I have outlawed so many parts of myself. In 1968, when I started school, autism wasn’t yet a thing. It existed, of course; autism has always existed; but there was no language for it. When you belong to a neuro-minority and you’re five, and you have no words to articulate your experience or to understand your difficulties, or visible forerunners to be that thing that you are in such a way that you know it’s more, so much more, than just OK … how do you make it tenable? How do you survive?

My response essentially was to shut myself down. I stopped eating. I rarely spoke. I suppressed my own information to the point where I was no longer even receiving it myself. I created an alternative structure, which I hoped made me look sufficiently like one of ‘them’ to avoid being eaten by the sharks. I lived and breathed like a cartoon shadow two inches outside and above myself.

This kind of displacement of self from the stream of impulse happens in a physical body, in myofascia and bones. Which brings me to Darren and Thoracic Ring Approach, the other process I’m involved in at present. We’re focusing on unwinding my ribcage. In a sense, though, it isn’t another process so much as a different emergence of the same one.

Thoracic Ring Approach sometimes seems to me to be a bit like horse whispering, or maybe it’s that Darren is a whisperer – a whisperer of ribs – I don’t know. Anyway, it’s a very subtle physical manipulation, so subtle that it seems to be at least equally neurological suggestion. As I understand it, underlying the less functional adaptive patterns in my body are older and more synergistic ones. Thoracic Ring Approach feels like slowly waking up to the original synergy. Because adaptive patterns are formed around experience, this must also be a somatic process – waking up to myofascial synergy catalyses waking up to behavioural synergy (and vice versa) – and a cathartic process, involving the re-emergence, sifting and integration of memory and the feeling and release of emotion. It devolves from body, but it’s a series of tiny and far-reaching shifts and recalibrations resonating through a whole person.

I spent a lot of my childhood being a horse. I didn’t relate to human beings very much at all, and for a while I insisted on eating from a bowl on the floor. (Children, if you want to freak out an adult, pick up your food with your mouth: it really, really disturbs them.) It wasn’t until some time in my forties, perhaps, that I fell in love with people. It happened through moving and experiencing the congruencies that arise in moving-with. It happened through touch: that thing with feathers, granules, veins. I had to learn outside social contexts, because social contexts were alien to me and only made me feel more dislocated from my real experience. I learnt to trust human beings, and I am very grateful for it, always. Because I learnt through my body senses, I’ve acquired – I think – the most reliable kind of guage of who to trust and who not, and so far I’ve never got it wrong.

Partly I wrote this article because I want to name the people who are currently holding transformative spaces for me. It’s a big-small thing we can do for each other; it’s a sacred task and it’s also very ordinary and human; and I’m extremely grateful that there are people with the capacity to do it for me. I want to name those people and I also want to acknowledge the level of trust that’s involved in relationship becoming transformative in this way. So, here goes: diving off the high board …

Gratitudes and acknowledgements
I’ve known Sue for about fourteen years now. In that time she’s been lots of things, not least a foremost ally for me in the reclamation of outlawed places. More than once I’ve been on the dance floor doing something that never appeared on the instruction sheet, some part of me doubting whether this can possibly be allowed to happen or whether the sharks are already stirring behind the rocks, and I hear Sue’s voice in my ear: ‘Trust it, Jess.’ I love you, Sue.

In a way, what I love about Darren (and actually I love a lot of things about Darren) is just that he’s willing to work with me, even though – and actually because – I’m super-complicated. I love that he keeps holding the box and doesn’t try too hard to veto poetic licence, that I always feel listened to and never coerced (which isn’t all that usual in my experience of physiotherapy), that what we’re engaged in feels like a collaborative exploration on the edge of what’s known. I always have the sense that if we both pushed at the same time, neither of us would fall over. I think that’s a measure of right relationship. Thank you, Darren.

All you need is love Afterword
It’s Tuesday. I’ve had this cold since right after the last lot of thoracic ring re-aligning, and I can’t shake it. I’m struggling to embody what’s pressing through to the surface. I want to collapse. I know what I need to do in my body, and physically I can do it, but somewhere else the horse is refusing the fence. I feel overwhelmed and submerged, and I hate being in this place. It’s sticky and uncomfortable, like wool against the skin. I don’t have much perspective and I definitely don’t have a conclusion.

Every time I write, I know in one atavistic part of me that that I have surely infringed several strange and unfathomable rules of neurotypical conduct and that I am therefore forever beyond the pale ­– but more compelling is the urge for self-exposure. I’d be burnt at the stake for it just because I couldn’t help it. I feel suffocated within the bounds of what’s speakable within neuro-normative culture. I know, too, that the places where we feel most unacceptable are the also the ones where we can potentially be most loved and that if we don’t expose them, we remain essentially invisible and unformed. So even though it feels like waving a bloodied rag at the sharks, I keep on speaking.

Image by Kenneth Geiger ©.

Monkey Girl: me, my ribs, the speaking body and some physiotherapists I have known

Once, in class, I’d reached out to touch a coil of braids on the head of the woman in the seat in front of me. I hadn’t been thinking at all, overwhelmed by the need to feel that intricacy of hair. She’d turned around. ‘My head doesn’t belong to you,’ she’d said icily, leaving me stuttering an apology, horrified at the way my chimp nature still popped out when I wasn’t paying attention.”—Karen Joy Fowler, We Are All Completely Beside Ourselves

Rosemary grew up with a chimp. While the chimp, in Karen Joy Fowler’s novel, acquires some human skills and characteristics, Rosemary also learns to emote and socialise a bit like a chimp. ‘There was something off about me,’ Rosemary says, ‘maybe in my gestures, my facial expressions or eye movement, and certainly in the things I said.’ Being autistic in a neurotypical world feels not dissimilar to this.

10482574_765329033510297_4537353880031777239_nI’m not horrified by my autistic nature – far from it – but I am very aware of its capacity for toppling things over. There’s a constant negotiation going on between my authentic monkey impulses and the way I know human beings are supposed to behave. The more I like someone, the more I want to bring all of myself to the table, but the bigger the risk of upsetting the teapot. I often feel like an over-large and over-enthusiastic dog who loves you just too much, and is just a bit too excited to see you. I’m scared I’ll knock you off your feet with the full force of myself.

There are some autistic people, I’m told, who show very little affect; I am not one of those autistic people. What I feel emits from my body like cartoon shock waves in the air. For many years, I tried to curb myself. This is called passing. It hurts. I walked around in an invisible straitjacket. I fitted right in. Unfortunately, I also had an eating disorder, ongoing low-level PTSD and chronic fatigue. I felt alienated not only from everyone and everything, but also from myself. I remember writing at the time that I felt like half a pound of bacon sealed in a plastic pack.

This is one reason why I live in the intersecting worlds of dance, movement and somatics. They’re speaking-body-positive. If I want to talk to one of my teachers on the Open Floor, I most often take their hand, partly because I can use and understand verbal speech more easily that way – touch closes that heart-stopping gulf that feels insurmountable by only words; partly because I feel plugged in when I’m physically connected. I imagine sonar detection must be a bit like this if you’re a bat. There’s a constant conversation of kinaesthetic chirrupings and whistlings when bodies are in contact, exchanges of information outside the closely defined meanings of verbal language.

Being hypermobile is for me intimately and inextricably connected with being autistic. It’s as if hypermobility were my body speaking autism. Just like autistic mind, crazy wisdom body is a maverick guide who navigates without a map. We find our trajectory by following footprints in the snow and parsing the arrows the birds make when they fly. Together we have ambled through a pleasant series of left fields, wire-walked precipital brinks and nearly drowned in a lot of raging seas. Never a dull moment, and our sense of direction must somehow have been good, because, by wit or wandering, we have finally made footfall on stable ground.

Since July, I’ve been re-aligning my ribcage. This means I’m embodying – slowly – a new and more functional form of internal support. For most of my life, I thought I had a congenital scoliosis. What I actually have turns out to be some kind of lopsided shiftingness which originates, I think, in the physical difficulty of getting upright at eighteen months1 and of staying at least periodically vertical for the following 50 years. As a hypermobile person, I’ve always found standing up a dizzy kind of challenge; with insufficient fascial integrity, the forces of nature tend inexorably towards collapse.2

What I’m doing with my ribs is called the Thoracic Ring Approach. It’s genius. I’m a little bit obsessed with it. If you grew up skew-wiff and ramshackle and sidling like a nervous horse, if you feel that some part of you has always been cowering in a corner, if your ribcage feels like a collapsed accordion and you’d like it to be a chamber that honours the fullness of your heart, if you’ve been leaning on that wall for fifty years and you feel it’s time to stand up and support yourself … Oh, wait, that’s me …

Thoracic Ring Approach emerged from the physiotherapy world, but in some ways it feels to me like a somatic practice that doesn’t know it is one. Like many somatic alignment processes, it presupposes that the body is naturally intelligent – that if you remind it where its ribs are meant to go, it will recognise the original template and recruit for itself the muscles it needs to support the new-old and more functional structure. In other words, it’s different from pulleys and levers and strengthening exercises for muscles which, if you’re proprioceptively challenged, you can’t isolate anyway. Give it a clue and the body will align itself towards optimum kinetic efficiency.

In other ways, Thoracic Ring Approach is definitely physiotherapy. It operates to all intents and purposes as if the physical body were an isolatable entity that could be addressed apart from the emotional body, the body of memories, the cognitive body and all the rest. The neurological body, actually that one’s being allowed in. It’s scientific. To a somaticist (an actual one) like me, this abstraction of physical body is either funny or frustrating or stupid, depending on your orientation to it in the moment. Because, clearly, how I support myself thoracically is not only a series of physical events but speaks to how I stand up in myself in emotional, relational, cognitive and all other ways. Which means that the unacknowledged part of this work – or the part that’s acknowledged only by me – is the call to support myself really. Not the pleasing façade behind whose illusion of substance I’m actually riding roughshod over my needs, isolating myself or playing truant, but the structure in which I’m able to line myself up synergistically and inhabit myself in a steady, congruent, measured way.

How I stack up thoracically is also intricately linked with how I carry my heart. My default position for a lifetime has been rib-crests-first – in which the rib crests stick out in front of the upper thoracic ribs. I’ve always thought of this as ‘false heart’. It means that you don’t meet anything or anybody with your real one. It’s taken me 51 years to be ready to embody the centred heart. It’s a commitment not just to random acts of radical vulnerabilty, but to a permanent and thorough-going physical, neurological and emotional repatterning in favour of heart first: clearly, honestly, unapologetically.

Something else you’re supposed to pretend isn’t happening in physiotherapy is inter-personal relationship. In somatic modalities, we recognise that when two bodies walk into the same room, a third body arises. This body is the thing that’s greater than the sum of the two parts. It’s totally unique, and it holds the creative potential. Somaticists, psychotherapists, experiential dancers and movers, we take it as read that in a therapeutic relationship a large part of the capacity for healing lies in the third body. As much as techniques and technology, people heal people.

I may have had more physiotherapists than lovers. UCH is the home of the hypermobility unit founded by the wonderful Professor Rodney Grahame, hypermobility hero. As a result of – gasp! – listening to his patients, Professor Grahame was instrumental in recognising hypermobility as a thing. I’d had a few not exactly helpful physiotherapeutic interventions, but I reckoned that at UCH the physiotherapists might be a bit more than averagely clued in about working with hypermobile people, so I got myself referred – to the locum in charge of the department. For a few sessions she took a very long time to do not very much, then finally told me I was able to manage my own condition and didn’t need physiotherapy. To be fair, I probably was able to manage it better than she was doing, but I was in chronic pain, I really did need guidance, support and structure, and I felt abandoned. Well, fuck you too, UCH physiotherapy department!

The environment in the physiotherapy clinic at my local NHS hospital felt toxic. It required an enormous investment of energy and expenditure of executive function to make an appointment there and keep it, so god knows what it was like to actually have to work in the place. In a dozen or so visits, I saw three different physiotherapists. The first one was good, but on secondment from another hospital so I only saw him once. The second one kept telling me what hypermobile people like. Hello? Isn’t it my job to tell you that? (Of course, everyone knows that hypermobile people are actually a globule and we all like exactly the same things.) The third one made me cry with frustration, and I discharged myself. If I can’t stabilise my shoulder blade, a good exercise is not: raise your arm keeping your shoulder blade stabilised. (Actually this is essentially what I’m doing now, but by means so crafty that serratus anterior didn’t realise it was being asked to do something until it found out it already had.)

A friend recommended Richard at Harley St Physio. For a couple of years, until he went back to Australia, I had a really good time with Richard. Richard, if you’re reading this, I still have an extensive collection of your Thera-Bands (especially green), and I always channel you when I want to create an original latex-based exercise to address, well, pretty much anything. I resolved a longterm issue with a thickened flexor hallucis longus tendon this way when the NHS specialist foot physio said there was nothing for it but cortisone injections.

I was introduced to the Thoracic Ring Approach by Darren Higgins at Vanbrugh Physio. I love Darren (yay!). Some of what I like about this relationship is that I feel contained without being constrained in it. I’ve written elsewhere on this blog about the problem of containment in a hypermobile body. With intermittent proprioceptive feedback it’s difficult, perhaps impossible, to establish a consistent sense of body boundary. It’s like being a dot-to-dot person, parts of me constantly threatening to trickle away through the in-between spaces. Because I’m also experiencing the autistic 42 per cent extra resting brain activity3 (and the exponential multiplication of 42 per cent when, most of the time, my brain isn’t resting), there’s an awful lot more that needs containing: a babbling stream of images, emotions, thoughts, ideas, interoceptive information. To encompass the range, multiplicity and shiftingness of it all, any kind of external relational holding also has to be elastic. If there isn’t room for expansion, I feel that I’m going to overflow the space – a frightening prospect of disembodiment and dispersal.

My friend Bruce values in a teacher something he calls ‘gravitas’. He’s queer and Scottish, so imagine it with a rolling ‘r’ and a camp sort of lilt. I think what he means by ‘gravitas’, is a kind of robustness that comes from having done what you do for a long time, from knowing the back and the front and the top and the bottom of it. It comes from confidence that this is enough, awareness that there’s always more, and the recognition that whatever you hold to be known, it’s never going to be the truth for everyone. I think he also means you have a sense of humour about yourself, and that you’re grown-up enough to be able mostly to roll with things, even if they’re a bit unusual. And I think he means that on the whole you don’t get toppled by over-enthusiastic dogs.

As a series of procedures that have to be followed the way they have be followed in order for the thing to work, Thoracic Ring Approach is itself a container. I always see it as an off-white shoe box, no writing or logo’s on it, and a lid that lifts completely off. It’s new shoes when I was five. This is a very good sign, because I love shoes. When I was five, I wanted to work in a shoe shop. You know when you go to empty the shredding bin and you take the lid off and all these little curls of paper spring out? That’s what’s in the shoe box. It’s really a bit too much. Once the lid’s off, you can’t keep it all in. That’s me. Bits of me keep escaping the process. So I like the boxiness of the box and the fact that Darren keeps putting errant bits of me back in. And that other bits spring out. And he puts them back in. Though lately, I’m getting quite good at staying there.

Just now, the process is still in process. I can’t quite do this ring thing independently yet, though one day I will be able to, and in the meantime I’m relying on Darren to hold the structure – energetically because he keeps being in the process with me; and practically because every time I get creative and maverick he stuffs me back in the box; and physically because he keeps manually putting my ribs back where they’re meant to be, and telling me when I’m holding them and when I’m letting them go, so we’re – slowly – creating proprioceptive intelligence over more sustained periods of time and across different activities. And in the meantime, new and more functional emotional, relational and professional structures are aligning themselves around me. But it isn’t really linear, more like butter forming in a churn.

1. Many hypermobile children start walking late. This is a great link: http://www.skillsforaction.com/infant-joint-hypermobility

2. Hypermobile people generally find standing difficult and tiring. Because our fascia lacks the tensility to hold us up effectively, we have to recruit a lot more muscle than a non-hypermobile person does in order to be upright. For many of us, hypermobility is coupled with Postural Orthostatic Tachycardia Syndrome (POTS), which means we may also feel faint when standing still.

3. I’ve written elsewhere about this too. According to a recent study, the resting brains of autistic children produce 42 per cent more information than those of non-autistic controls.

A Cascade of Epiphanies: in which I put my foot behind my head and end up writing about injury again

Recently I’ve been again in the strange and exquisite process of injury. I didn’t volunteer. I don’t always feel grateful. It’s almost a cliche that injury is a gift, but the gift is another of those bad-fairy ones: you-didn’t-want-to-sleep-for-a-hundred-years-but-in-the-end-you-get-the-prince kind of thing.

It feels like about a hundred years ­– easily – but despite a cascade of tender little epiphanies, I haven’t got the prince yet. And since I’m still in process with this one, I’m not going to write about particularities. Seeds need to germinate in the dark.

Practice without epiphany would be an odd kind of practice to me, but injury seems to act as a particular kind of awareness cluster – an escalation, an intensification, also often a redirection, a refocusing and re-envisioning. It’s a call to pay attention, an opportunity for a kind of meta realignment, which contains biomechanics – signposts for practical physical restructuring – but is also much bigger, carrying personal mythopoeic meanings with the potential to unravel, rewind and reorient. It speaks to the occluded histories of my body, to ways of being in the world so familar as to have become transparent to me, and through all of this to the potential for fuller human becoming.

My practice is cyclic. I’ve been fortunate in that hypermobility deprived me early on of any illusion of linearity in these things. There are times of more; there are times of less. Over-arching this one-step, two-step in the realm of performative physical capability, is a boader pattern of integration, enlargement, attunement on an increasingly subtle level. What seems to arise is on the one hand a more precise and intuitive faculty of discrimination ­– viveka – and on the other, the slow inexorable seepage of love.

A long time ago, I put myself in apprenticeship to my body; it’s the teachings that emerge from being a body, and from reflecting on and as that body, that really inform me. I have little interest in abstract yoga philosophy. I’m sceptical about enlightenment and the ‘higher’ states of awareness: samsara as something attainable, something ‘over there’. What’s happened to me is more like a slow settling, a sifting and shifting, like an old house on friable ground. The more it settles, the more the walls crack. The situation is essentially imperfectible. It’s the humanness of this that absorbs me.

After 33 years, I feel that my practice is really just beginning to get interesting. Maybe I”m a slow starter. Matthew Remski’s WAWADIA project has produced quite a bit of discussion of a kind of asana plateau, which happens, apparently, somewhere around three to five years into practice – like the yoga version of the seven-year itch. Maybe this has to do with the limited attention span of neurotypical people (a source of ongoing amazement to those of us on the spectrum). Autistic people are orientated to detail and pattern. We will happily do the same thing every day for years and years, because it never is the same thing. Repetition is revelation: my practice is always full of surprises.

I think it also has to do with an essential human resistance to change. Few of us embark on a yoga practice with a knowledge of how deep and thorough-going will be the transformation it requires of us. We expect yoga to be contained in the magic one hour or ninety minutes. We expect it to be pleasant and enlivening. We don’t expect it to crack out of stasis our old habituated patterns, or to surface deeply embodied historical trauma. The most commonly given reasons for coming to a yoga class by my beginning students are: to get fit, to increase flexibility, to lose weight and to relax. When practice starts to require of them much, much, very much more, they frequently slide silently out.

I know that many schools consider two years’ practice to be sufficient to embark on yoga teacher training, but to me, two, three or five years is scarcely a beginning. To me, a practice becomes a practice when it’s seen you through at least a couple of generations – through births, deaths and marriages, love and loss. It seems to be symptomatic of the Tesco superstore mentality afflicting our culture that we jump ship so readily. If there’s always another product on the shelf with another promise of youth, fitness and vitality, why bother to negotiate inconvenient and difficult obstacles? Why bother to learn anything at all?

Matthew reckons that most people enter yoga in search of some kind of therapeutic outcome. I’m not most people, so I don’t know whether this is true or not. I started practising yoga when I was eighteen, I didn’t have any physical parts in obvious need of fixing, and I couldn’t have told you why I was doing it. In retrospect, it’s clear to me that I was hungry for embodiment. I was autistic, anorexic and out of my depth, and everything was a last-ditch stand. No habitat I could locate felt vast or wild enough to reflect my internal experience. I was desperate for a sense of containment, of physical integration, of the parts adhering to the whole. I urgently needed to discover some kind of coherent centre. I suppose that, in a very broad sense, this could be seen as a therapeutic motivation, but really I viewed it more as an artistic mandate, in which I was both the art and the artist. I still do see it that way.

Most of my life I’ve lived to move, not moved to live. I tumbled head first into astanga vinyasa because I was enthralled by the movement and captivated by the preoccupation with edge. I wasn’t all that interested in what it could do for my health and wellbeing. It turned out that many of the arrows pointed in both directions, but I can’t in honesty say that all of them do. The ongoing challenge is to nudge the situation into some form of do-ability. As I’ve tipped over onto the descending flank of the hill, my orientation has shifted – a little bit. The materials are in slow metamorphosis. They are gradually producing a different kind of art and a different kind of artist. At 51, I know that each day of astanga vinyasa is a day of grace. I know that one day the practice will spit me out – not, I hope, before I’ve been thoroughly chewed up by it. I’m going for complete mastication. I’m giving it my all.

Foot behind head


It takes a village to keep a hypermobile body in something like working order. I would like to thank Darren Higgins at Vanbrugh Physio. I can’t tell you how long I’ve been looking for a physio I can actually work with – found one! I would also like to thank 
my wonderful osteopaths and much – very much – loved companions on the path of the dance Indi Ajimal and Cyprian Londt. And where would I be without Scott Johnson and Andy Gill at Stillpoint Yoga London? Lots of love, guys.

 

 

Autistic movers and shakers: some suggestions for supporting autistic people in yoga, dance and moving practice

As lots of you reading this will probably know, I was diagnosed and came out as autistic (1) in 2013. Several of the blog posts here touch on my experience of being autistic as it relates to movement practice in different forms. Naively (and perhaps if I wasn’t autistic I would have foreseen this), I wasn’t expecting the gentle avalanche of requests that followed from colleagues, friends, and friends of friends for a ‘chat’ about autism. Some of these have been, poignantly, from closeted autistic people wanting to come out to me; some have been from people with autistic family members seeking ways to offer more useful support; some have been from professionals in the movement field wanting advice on how to work with autistic clients. All people with good intentions and a genuine desire for communication and greater understanding.

I have been touched that my experiences have resonated with other people and gladdened that there are those of you out there wanting to know more about autism and how to work in helpful ways with those of us on the spectrum. And yet at the same time I’ve found this desire for more of me difficult – sometimes invasive – if I’m honest. A foremost intention for me in writing is for authenticity and truth to my experience, and so I imagine my writing often comes across as intimate and confessional. And it is. But it’s also highly controlled. I’m selective in what I choose to share and how I choose to share it. And I’m autistic. Which means that ‘chatting’ to someone I don’t know well is never going to be high up on my list of easy and enjoyable experiences (I have social deficits and verbal processing delays) or one that I can take part in without expending a lot of energy.

It seems that autistic people are generally considered to be rare and exotic animals with mysterious behaviours and unguessable needs. And as the local tame autistic person, I’m regarded as a handy guide into the hinterland of the autistic habitat. Here we sit in the trees, hiding from David Attenborough and throwing banana peel on the heads of unsuspecting tourists … The thing is, unless you’ve spent your life meditating in a cave, you will already have met at least a handful of autistic people. We are living, working, parenting and participating in communities everywhere. If you’re a movement facilitator or a yoga teacher, it’s more than likely that any group classes you run already include people on the spectrum. However, because there is still a huge amount of stigma and misunderstanding surrounding autism, a lot of autistic people remain either undiagnosed or in the closet, so you may not be aware of who your autistic students, friends and colleagues are.

So this blog post is by way of offering a few suggestions for yoga teachers and movement facilitators working with autistic people. Please bear in mind that it’s subjective. While it’s probably safe to assume that some of what makes it easier and some of what makes it harder for me to participate in sessions, classes, groups and workshops will be general among those of us on the spectrum, I’m not a specialist in what other autistic people need, so if you’re about to start working with someone autistic and you’re not sure how to go about it, here’s my number one suggestion:

Don’t ask me, ask your autistic client
They are the expert on what it’s like to be them. Have a conversation – perhaps initially by email rather than verbally, as many of us find writing easier than speaking. (But check with the individual client: if they’re dyslexic, as many autistic people are, an email exchange may be difficult for them.) Ask them what they would like to get out of the sessions and what they need in order to be able to participate most fully. While there are commonalities, autistic people are individuals. As the saying goes, ‘If you’ve met one autistic person, you’ve met one autistic person’. We wouldn’t expect all our neurotypical clients to want the same thing or to react in the same way. All autistic clients won’t either.

Sensory issues
Most autistic people are hyper-sensitive to some or all of: texture, smell, sight, sound and taste. Whereas someone from out-of-autistic-spectrum may be able to disregard a sound or a texture they find unpleasant, an autistic person is likely to have limited sensory filters and may not be able to stow the sensory stimulation out of the field of their attention.

In general, make the environment as clear, quiet and unfussy as possible. Check in with your autistic client about fluorescent lights (they interfere with processing for most of us and may feel painful), incense, particular textures, background sounds (your autistic client may be bothered by sounds you hadn’t noticed and can barely hear) … even colours. I have a reaction to the mauve shades of purple that amounts to physical interference. They make me feel as if someone’s running a comb across my teeth. They jangle inside my bones and create a buzzy feeling in my head. So I’d rather not have a purple yoga mat. On the other hand, I know autistic people who love purple so much they’ll want to get down on their knees and lick your purple yoga mat. No, not really. Although we are usually highly oral (and I do sometimes want to put colours in my mouth), we also tend to be more fastidious than the average non-autistic person …

… which means that things you find pretty inoffensive may be literally nauseating to someone with autism. Nobody (I think) likes toe nail clippings on the floor, spitting when you talk, stale sweat, rubbish bins overflowing with empty fastfood cartons and snotty tissues, snorting and other overly demonstrative methods of mucous clearing … but whereas a neurotypical person may be able to tolerate this kind of ordinary grossness or place it out of field, an autistic person may not have these capacities and may be able to focus on nothing else.

A word on music
Sensory sensitivity has implications for those of us who facilitate movement to music. I may or may not like a track, but I can dance with it either way; this is an important skill for a dance practitioner that many of us have cultivated. However, if the track contains sensory triggers (for me usually very loud and insistently banging), I need to stop hearing it straightaway. Persisting in seeking ways to move with it will generally lead me to dissociate and / or melt down.

If you usually use music in the background, check whether this will be appropriate for your autistic client. For some of us, background music interferes with focusing and processing; for others (I’m one of these) it will be very, very stimulating. I can listen to music comfortably only when it’s possible to dance to it. If I can’t dance, I feel as if I’m going to explode – even if the music is ‘relaxing’.

Verbal processing delays
Many autistic people have difficulties and delays in speaking and processing others’ speech. Even if this does not immediately appear to be the case, check in with your client about their needs in this area anyway. Many of us have learnt to compensate for this deficit very skillfully and may appear – and actually be – highly articulate, but this does not mean that we are processing spoken language at normal speed and with the expected ease, or that we can do so in every context. Particularly if we are tired, stressed, overwhelmed by environmental static (other people talking in the background, strong smells, visual distractions) or bombarded with a lot of speech, we may be struggling to keep up and appear normal.

Someone with autism may find it difficult to decode and assimilate a long string of spoken instructions, so if, for example, you’re explaining the alignment of a yoga posture, it may be helpful to demonstrate it or have someone else demonstrate (quite a lot of us process visually), or use adjustments so that the person can feel it – but see the section on Touching coming up next.

Autistic brains are wired to focus intensely on one thing at a time, so language may be difficult to access if we are wholly absorbed in a physical process. I experience this as a kind of verbal drift, or as some words not being in the right boxes. I may stumble over words and say whatever comes into my head to fill the requirement for speech (even if the result has little relationship with what I’m actually thinking or feeling). It’s not uncommon for autistic people to lose speech entirely (mutism) in situations of stress. Last time I had a filling, the anaesthetic didn’t work (2). I went mute and so wasn’t able to tell anyone there was a problem. I have had similar experiences, when younger, with strong astanga adjustments in situations where I didn’t know the teacher well and / or the teacher felt to me very senior and carried a lot of kudos. (Even if you feel like a very new and inexperienced teacher, to your student you will almost certainly still carry kudos.) Check in regularly with your autistic client about how things are going from their point of view, and always – and repeatedly – communicate to them that their feedback is not only welcome but a crucial part of a two-way process. If your client can’t respond in words and seems generally frozen or passive, know that they are probably very upset, let go of the project, and offer them opportunities to calm down and find their ground once again. It may be an option for them to write, later, about what happened from their point of view and email their writing to you.

Some autistic people don’t use speech at all, and I’m hoping a few of you will comment on this post, because I do communicate by speaking (if sometimes reluctantly), so I feel unqualified to write about non-verbal autistic people’s communicaton needs, but I’d like to include them.

Touching
Before you envelop your new client in a warm hug, check whether they would like to set any boundaries around how they are touched. Some autistic people don’t like to be touched at all; others are happy to be touched in particular ways but not in others; some of us are definitely on the touchy-feely end of the spectrum. Light, floaty touch is unpleasant to many autistic people; some of us enjoy firm touch – which to me feels containing and offers a sense of body boundary that I generally experience only intermittently. But do check with the individual – it may be different for them.

Physical boundaries of course also depend on who’s doing the touching. The difference for autistic people is that our preferences may not be as socially determined as they generally are for those off-spectrum. I have good friends who I don’t like to touch me at all, whereas I’m sometimes happy to be physically intimate (on the dancefloor, for example) with a complete stranger. I can’t explain logically who is who and which is which; it’s just a feeling.

Be aware that if you have not checked with your client about physical touch – in a way that lets them know that their preferences are paramount, that they have control over how they are touched, that their wish not to be touched will not get in the way of the work of the session or offend you – they may be going along with a level of touch you have presumed to be OK but are squirming inwardly.

Sensitivity and sixth sense
Many autistic people are highly sensitive to the unspoken and may be very aware of what you are feeling but not saying, and cogniscent of any discrepancy. Others are actually psychic. Know that your client may be relating less to what you are saying and more to who you are being, so – while maintaining appropriate client–practitioner boundaries – you may as well drop any social or professional masks from the get-go and meet us as you are. We will appreciate your honesty and straightforwardness.

Don’t feel slighted if, for reasons they cannot properly explain, an autistic client chooses not to continue in sessions with you. I have friends I know to be excellent practitioners, but I cannot work as a client with them. I feel them – physically – as dissonant with me. Often, they feel ‘purple’ – for me, a very high-frequency vibration that I cannot assimilate. Some modalities of work feel like this to me too. This seems to be some sort of objective energetic happening on a plane of experience we don’t have language for and rarely acknowledge. It isn’t personal, so, as much as possible, don’t take it that way.

Cut the small talk
We don’t do it, so don’t expect it. Just get down to business.

Neurotypical brains are primed for socialisation in a way that autistic brains are not. We find it difficult to learn and retain social etiquette, or to get the point of it, although some of us become consummate actors, able to fake it by running memorised scripts. As I’ve got older, my repertoire of scripts has become wider and more sophisticated, and I have become highly skilled at juggling them. Unless I’m tired or distracted (when the scripts get jumbled and vocabulary dislocated), it all looks very convincing, but don’t be fooled – I am not using social language spontaneously. Don’t be offended if your autistic client forgets to greet you or doesn’t smile when you expect it. The chances are they’re not upset or angry with you; they may just have forgotten that these kinds of behaviours are significant in neurotypical relationships.

Don’t expect eye contact
Some of us have learnt to mimic neurotypical eye contact in social settings and may fake it convincingly. Don’t be taken in – we’re not enjoying it. Avoid exercises that require your autistic client to make or sustain eye contact. I have heard autistic people describe eye contact as ‘agonising’, ‘painful’ and – when forced – ‘cruel’. I’ve written more about my own experience of eye contact on the dancefloor here.

It’s intense in here
Before I was identified as autistic, I always had the sense that I was feeling a lot more, and more intensely, than everyone else. It was – and is – often overwhelming. Now I know that this is not just an impression but a physiological reality for autistic people. Know that while some areas of the autistic brain are under-connected (for me, those to do with numbers, direction and sequencing, for example), other areas are hyper-connected (for me, vision, written language, emotion). According to a recent study, the brains of autistic children produce on average 42 per cent more information than those of non-autistic children when in a resting state. No news to autistic people. And bear in mind that that’s in a resting state. When we start doing, thinking, processing, interacting and all the rest, 42 per cent multiplies exponentially. There’s loads going on inside here, so slow down, remember less is more, and give us time to assimilate.

Communicate the structure
Most autistic people find unpredictability difficult to deal with and need a sense of reliable structure. This is why I gravitate towards practices based on repeated forms: the four series of astanga vinyasa yoga, the Five Rhythms of Gabrielle Roth’s dance practice. If I’m taking part in a workshop, it’s much easier for me to integrate work if I’m given an outline in advance of what’s going to happen when, and what the intention is. A known structure offers me a container within which I am able to surrender and allow spontaneous emergence.

Don’t change the structure or the boundaries
If you have given your autistic client a structure, know that you risk losing their trust if you change it. Unexpected deviations are difficult for us to deal with and may completely derail us. Don’t vary times either. Most autistic people are punctilious about practical boundaries. We will uphold them exactly and will expect you to do likewise. If you tell your autistic client the workshop will finish at 6pm but it actually finishes at 6.15pm, they may be scared, confused or angry with you for not honouring the agreement about timing.

We give one hundred per cent
Autistic people generally have very high expectations of ourselves and will frequently offer far more than you anticipated or asked for. We are, in general, self-starters and have an abundance of the motivation for working alone and over time that neurotypical people may struggle to find. A yoga student on the spectrum may immediately establish a daily home practice – finding in it the ritual and repetition that autistic people generally need and seek to create in our lives. An autistic dancer may research the background to the work in depth and detail, come up with ideas no one else has thought of, and ask the important questions that are generally placed out of the frame.

‘I want to be alone’
Being with other people is very demanding for those of us on the spectrum, and we will quickly become fatigued and overloaded. If you are facilitating a group, include plenty of time for working solo so that we can calm down, centre and find themselves again. While it is a myth that autistic people dislike or don’t need contact with others – in fact we are each social according to our own unique pattern of preferences and capacities – unalleviated interaction with others is experienced as a form of torture by people on the spectrum.

At the same time, some organised group activity may be appreciated by some autistic people as a way of facilitating participation which they may find hard to initiate and sustain without an externally held structure.

Autism is exhausting
For an autistic person, processing speech and dealing with sensory stimulae takes a lot of energy, a commodity already in short supply (3). If your client is also hypermobile (see below), sitting, standing and generally being upright will also require extra energy. Keep sessions short-ish and offer breaks. Don’t expect an autistic person to participate in lengthy spoken communication, or a hypermobile person to stand for more than a minute or so, and make sure that there are possibilities for the hypermobile person to support their back if sitting.

Stillness and stimming
Most autistic people stim. A stim is something like a repetitive fidget – finger rubbing, hair twirling, face stroking, ankle circling. The word ‘stim’ is derived from ‘stimulating’ and was obviously coined by a neurotypical person, as it’s a complete misnomer. Stims are actually soothing – good god, the last thing an autistic person wants is more stimulation! After years of socialisation, I never managed to eradicate stims totally. Videos made of Phoenix Rising yoga therapy sessions for the four-yearly recertification required for PRYT therapists show me rocking and twiddling my thumbs. Over the past couple of years I have gradually thawed my neurotypical-mimicking holding patterns and allowed my stims back into public space.

Know that being still may not be an option for an autistic person, even if they’re trying very hard. If you have reified sitting still and see it as synonymous with meditation, presence or paying attention, your autistic clients may be about to bring you back to reality. Stimming helps autistic people to stay present. It assists us in processing the rolling boil of thoughts, feelings and sense impressions; staying calm and focusing. It’s inhumane to force an autistic person to be totally still – and if they are also hypermobile, prolonged physical stillness may well also be somewhere in the range from uncomfortable to acutely painful.

Co-existing conditions
Dyspraxia
When I asked some autistic people what they would want a movement professional to know about working with an autistic client, most of them mentioned not issues around autism itself, but those associated with the co-existing condition dyspraxia.

Many – possibly all – autistic people are also dyspraxic. This means that we may have difficulty following sequences and in knowing where we are in space; our balance may be poor; we may appear generally clumsy, wobbly and uncoordinated, and we may have poor motor skills. A dyspraxic person may need to see a movement sequence many times in order to embody it. If you are demonstrating a sequence, they may be unable to mirror you, and they may find it difficult to follow left / right directions. If asked to replicate a shape you are making, a person with dyspraxia may reverse it or be paralysed by confusion. So keep any sequences simple, face the same way as your student when demonstrating, and be prepared to prompt and realign them again and again. Be patient. Remember, they are finding this a lot harder than you are.

Ehlers Danlos / Hypermobility Syndrome
Many autistic people also have Ehlers Danlos / Hypermobility Syndrome (ED / HMS). I’ve already written at length about teaching yoga to people with hypermobility, so all I’ll add here is that, as in the general population, ED / HMS often goes undiagnosed in those of us with autism, so be aware that it may well be present even if your client hasn’t declared it in their medical history, and it will affect how you need to work with them, whichever modality you are offering, but particularly if you are teaching a set movement form.

This writing isn’t a list of things you need to get right for us. Most autistic people will be forgiving if you forget that Nag Champa makes them feel sick or they can’t stand being touched on their back. It’s the intention that matters. Generally, in my experience anyway, autistic people in group settings are expected to take care of our own needs, fit in and get on with it. We so rarely receive active enquiry about what would help us to be present and to access the work that we’re likely to be overwhelmed with gratitude that you even asked.

If you have been offered the opportunity to work with an autistic person, you are very lucky. Autistic people are often highly creative, unusually sensitive, off-the-wall and out-of-the box (box? … what box? … was there a box?). When engaged, we are focused like no other, and we have a phenomenal eye for detail. We will bring original ideas and open up new and unexpected spaces for you. Remember to check in with us regularly about what you are doing well and anything you could be doing differently, and enjoy the ride!

1. An excellent definition of autism is by Nick Walker: http://neurocosmopolitanism.com/what-is-autism.

2. A common issue for autistic / hypermobile people (there’s a significant crossover): http://hypermobility.org/help-advice/local-anaesthetic.

3. Research suggests that there are differences in the mitochondria of autistic people, pointing to a cellular origin for the issues of fatigue and low energy that are frequently an aspect of autism: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3885720.

It is not the words: art, (dis)ability, thinking in pictures and speaking with the body

ImageJudith Scott was an artist (she died in 2005). She made large, intricate, colourful pieces by wrapping with yarn and strips of cloth. Inside these womb-like, containing spaces, x-rays reveal concealed objects: forks, rings – small daily items from her immediate environment. Judith also had Downs Syndrome; she was deaf and non-speaking and spent her life up to the age of 43 in institutions. Here, when she was a child, crayons were taken away from her because she was considered too ‘retarded’ to be able to use them – even though she clearly was using them, perhaps not in the way the staff expected, but artists do the unexpected with their materials. Judith’s medical notes record that after the crayons were taken away, she cried for hours.

The introduction to the video about Judith on karmatube poses the question, ‘Can something can be called art if it is made by someone who does not consider herself an artist?’ I wonder why it’s assumed that Judith didn’t consider herself an artist. Because she didn’t speak, write or sign? Because she didn’t articulate artist as a word? Is the word itself a magical signifier of reality? Folded into the assumption that Judith did not consider herself an artist is a second one that because she didn’t speak, write or sign, she didn’t reflect. But as soon as she got the opportunity, Judith spent every day, all day, making art, continuing sometimes until her fingers bled. It seems to me that her work is a body of non-verbal reflection and that she communicated her identity loud and clear.

Like many (though not all) autistic people, I think in images and translate into words. My thought-pictures are evocative, textured and intensely compelling. I also experience emotion as image and similarly have to slowly deduce – or maybe it’s more like seduce – the terminology for the feeling from the colours, lines, tone and content. It’s a kind of internal pathetic fallacy. For some visual thinkers, see-thinking is realistic. Temple Grandin, for instance, explains that her visual memories are like computer files stored in her brain. They are accurate and precise and make her a highly skilled structural designer. This way of thinking enabled her to note design faults in the Fukushima nuclear plant and predict the disaster that occurred there as a result of the tsunami in 2011. For me, though, see-thinking is mythopoeic. It’s an arthouse movie, an expanding, interconnecting sequence of images that carry meanings on multiple levels, psychological, emotional, somatic.

It’s only very recently that I realised most other people’s mental processes don’t happen this way, and I’m still puzzled by how it’s possible to think without seeing it. It turns out to be equally difficult to convey to non-see-thinkers what it’s like to see-think and how the translation process works. For a start – in my mind anyway – there are always many layers of interpenetrating images going on at the same time. I say ‘going on’ because they’re not static like paintings; they shift and change, and I can move between, into and through them. I can also alter them, though where this ‘I’ is located, what is volitional and what arises organically beyond ‘my’ control, is not entirely clear to me. I suppose it’s really a dialogue of unconscious and conscious mind. Once I start to transpose image into word, the words themselves arise as image – sometimes typed in Courier on a strip of paper – and then generate more images, so the richness and multi-dimensionality of meaning is often overwhelming.

In the process of paring and refining into language, much of the expansiveness, beauty and subtlety of the original vision gets lost frustratingly in the gaps between the words. And there are experiences and feelings that simply have no words in the English language, or for which language fails to provide fine enough distinctions:

When the phone stopped ringing she perceived a peculiar silence. One of many. Which one? There is a silence of perception. It wasn’t that. Thoughtless silence? Forced silence? Chosen silence? Silence because you’re listening. Fearful silence. Because the radio’s broken. Hesitation. When you don’t say it because you don’t want to hurt the other person. Enraged silence. When you don’t say it because it’s not going to do any good. Waiting. Thinking. Not wanting to be misunderstood. Refusing to participate. Self-absorption. When a loud sound is over. Shame. (Empathy, Sarah Schulman)

I wouldn’t be surprised  if someone like Judith Scott found verbal language just too much of a dispersal of creative energy. I’m not deaf and I find it very exhausting. I have hyperlexia – defined as a significantly higher than average ability with the written word, coupled with a lower than average ability to comprehend spoken language. My intuitive sense is that I read body language and facial expression preferentially; I definitely find speech harder to understand when these are not available, and I detest the phone. My hyperlexia seems to me a paradox. I feel that it arises out of the secondariness for me of word as a mental process and a sense of the urgency of translation if I am to swim in the shoal. Because no one wants to be eaten by a shark. Yet I write seldom. It’s too arduous; the sense of the breadth of the of the gulf to be bridged too daunting. While in a sort of way words allow me to feel connected, they also fix me in isolation – because words are cyphers, and the actual experience always floats silently between them just out of reach. As Hamlet says, ‘My words fly up, my thoughts remain below.’

According to research, 70 per cent of interpersonal communication actually occurs not through the clipping of words but through the body, so perhaps hyperlexics are actually more tuned in than the average person to the full range of human expression and are in fact listening where it really counts. And it cuts both ways. My hands are very articulate. I speak with them a lot. They often carry meanings from inside that I haven’t yet been able to understand verbally or that words lack the subtlety and finesse to encode. When I began to investigate the possibility that I might be on the autistic spectrum, I learnt that body-speaking is a defining ability of autistic people. There’s a term for it. The term is ‘flapping’. Yes, ‘flapping’ … as in penguin. Many autistic people who have been in special education aimed at training them to pass – to appear as seamlessly neurotypical as possible – recall the instruction, ‘Quiet hands!’, meaning that they should sit on it and shut up. God forbid you should get the crayons if you don’t know how to use them!

It’s no news to anyone, I think, that in our culture the mind is prioritised and privileged, while the body and its productions are denigrated. Whereas in earlier times the suppression of the body took the form of a kind of moral demonisation– even furniture had to be clad in tablecloths and antimacassars in case it got too exciting – today the body is undermined by industrial-scale prostitution. It flaunts itself in a window in Amsterdam, infinitely purchaseable and totally silenced. Even loci of somatic enquiry and embodiment, the holy asylums of the speaking body, have been infiltrated by commercial pimpery. The reified yoga body is a multi-billion-dollar cash cow. Who would have thought we could be brainwashed into buying ‘improved’ versions of our own bodies? Never mind that these digital manipulations are not realisable in the living, breathing world. No wonder so much energy goes into silencing the autistic body. A body that speaks irrepressibly its own meaning has the potential for very exciting subversion. Maybe this is why I don’t own a pair of lululemon yoga pants.

I found out about Judith Scott from Emma Roberts. Emma is a Five Rhythms dance teacher, a dance artist and a fellow explorer in the badlands of the moving body. As a child, Emma was told she had ‘ants in her pants and poor concentration’. But what if she was concentrating on the ants in her pants? After all, she went on to train in classical dance, which requires a great deal of focus – and a lot of ants. What if the ants in her pants were the way she was communicating? What if she was just speaking her primary language?

Since I was diagnosed with autism earlier this year, I’ve been thinking a lot about ability and disability and what, if anything, these words even mean. As someone on the autistic spectrum, I’m likely to give you the wrong change and the wrong date, my short-term memory would shame a goldfish, and I don’t know left from right or the difficult bits of the times tables, but I do have a first-class degree and a doctorate (in Pictures and Words, of course – I’m frightened of the sharks). I can’t stand or sit with my back unsupported for more than a minute or two, and I really need a seat on public transport because of Ehlers Danlos / Hypermobility Syndrome, but at the age of 50 I have an astanga practice that would be beyond most people in their twenties. Both autism and ED / HMS involve binaries of deficit and hyper-ability – what autism specialist Tania Marshall calls super-powers. It feels dishonest to describe myself as disabled, and dishonest to describe myself as not disabled.  I live in a floating space of both / and, neither / nor. Judith Scott’s deficits  appear far more evident, and yet they bleed so seamlessly into her genius as an artist. It seems incontravertible to me really only that Judith Scott was Judith Scott.

Judith Scott: http://www.judithandjoycescott.com

Emma Roberts: http://www.shapingtheinvisible.co.uk

Thinking in Pictures, Temple Grandin, Doubleday, 2006.

Empathy, Sarah Schulman, Arsenal Pulp Press, 2006.

Loud Hands: Autistic People Speaking, The Autistic Self Advocacy Network, 2012.