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.

Containers not contents: reflections from the Open Floor

For me, dance movement practice is essentially a surrender to emergence. It’s what happens when I slide away some door-like part of consciousness and allow movement to unspool through me. This arising-into-form is both essentially of me – so very personal – and at the same time much bigger and beyond.1 Facilitating dance movement is the work of holding a strong but elastic container in which this unforeseeable choreography can materialise. The purity of the vessel is important. The work isn’t about imposing content, directing attention or in some way imposing something on the spontaneous pressing-through of impulse into movement. Even intention feels suspect.

An autistic person is a goat, not a sheep, and I have always needed to follow my own trajectory, to cut loose from the prescribed curriculum, the required texts. I remember the immense sense of relief when I started my PhD. Finally, there was only me following only my own string into the centre of the labyrinth.

I seem to be – am – doing something with the Open Floor that is different from the thing everyone else is doing, and although it feels obvious to me, it appears to be difficult for other people (except the people I’m actually doing it with) to grasp. It’s a lovely, lonely situation. During the mentor group meeting on Friday, I wrote down:

I’m not trying to teach anything, but to create conditions in which the mover can become more regulated, and so their body can become the teacher. This is an organic process. As the nervous system falls into rhythm, the process naturally unfolds.

On reflection, perhaps this is a difference between teaching and therapy. The therapist gives less energy to explanation and more to opening opportunity for becoming and discovering.2

I don’t go into a dance space to teach Core Movement Principles, but they are offering me a language to identify and articulate what I see emerging on the floor. I work a lot with autistic people and with people with developmental trauma (sometimes they’re the same people). In this context, Activate and Settle speaks to me of a re-tuning of the nervous system, which needs to be able to undulate fluidly between parasympathetic and sympathetic in order for there to be well-being in the whole person. Towards and Away suggests a capacity to touch into and out of painful places.3 Ground speaks to how we find ourselves here and now, on this earth, in this body, in this room. We have a relationship to where we are – physically are – now. Looking through the frame of the Four Hungers, I can see that where my Small Group are at present, at the beginning of their journey together, is in the first Hunger – feeling into a sense of safety, finding or re-finding connection with themselves, expanding into their own internal capacity to create and to enjoy – and that we need to open towards the second Hunger (I with another) only very slowly and with attention to experience in tiny increments.

Clarifying what it is that I do, letting go of the imagined, self-imposed and ill-fitting project, and putting my feet back squarely in my own shoes has been an essential recalibration in locating myself in Open Floor work. I’m grateful for the permission, space and encouragement I’ve been offered to find myself and to work from that place. Still, it’s hard to keep standing in otherness. There’s no one to bounce off without odd tangents, and I’m constantly anxious that I’m about to be kicked out or brought to book.

If I have any doubts about the orientation I’m bringing to my work, what lays them to rest is the responses of the people I’m working with. I’ve been deeply touched to witness them in the process of movement and to hear their reflections on how this work is changing things for them. There’s something here for me about the potency of simplicity – of setting it up, trusting that it’s enough and having the faith to step back and allow it all to happen. It does take faith not to intervene, suggest and control but simply to go on holding the structure. Only that.

Being on this training has been for me so far a complex confection of willingness and resistance, belonging and feeling outside, being present and being energetically absent without leave. But it has made me put myself behind my own dance work in a way that up to now I hadn’t. That work has been happening for about six years off and on, but it has never quite had the courage of my convictions. It was a missing piece of me. Now it is taking its place at the table.

More about my dance movement work.

armsjohnand partner

1. Dan Siegel explains the neurological mechanism behind the feeling of being moved in Mindsight. If anyone can find the page reference, please tell me.

2. Because I’m on the teacher track, I’m not able to refer to myself as a therapist, or what I do as therapy, under the Open Floor banner. This is tricky, because I’m a Registered Somatic Movement Therapist and a certified yoga therapist and I’ve been working therapeutically for longer than I’ve been teaching, which is quite a lot of years. I wonder what Open Floor teachers who already work therapeutically with movement are going to do with ourselves. We’re not psychotherapists introducing movement into speech-based work either. We already work therapeutically with the person through the medium of the body.

3. ‘Pendulate’ in Somatic Experiencing language.

 

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 ©.

This is a safe space: in which I want to turn the shoe box into a swimming pool but am afraid of being exterminated

This is safe spaceThis morning I handed over the shoe box, now containing, packed in the shredded paper, little pieces of my heart – tender casualties, torn, lost, gathered up and returned for safe-keeping by people who noticed when I didn’t, or when I couldn’t care less (or thought I couldn’t) – people in my communities: dancers, movers, astangi’s, people of queerness, autistics … I handed it to someone I trust to hold it. The thing is, it’s made of cardboard and for a while I need someone to keep it dry.

If you have any clue what the shoe box is all about, you will know already that I’m in a process of restructuring my ribcage. (If you don’t have a clue, read this.) When you start to change deeply held physical patterns, it goes without saying that you’re going to reveal deeply held emotional and behavioural patterns too. It’s like flakes of old paint lifting away and what’s left is a kind of transparency.

On my mat this morning. Solstice sunrise. Light and darkness shifting in the balance. The last bit of rib rejigging, which in the moment seemed like barely anything at all, afterwards unleashed a crazy tumult of feelings too big and too swirling to categorise into words that name emotions. It’s said that autistic people lack capacity to recognise emotions. This is called alexithymia. I think the issue is actually that the English language lacks vocabulary with the finesse to name the breadth, depth and particularity of autistic emotions. And that we need time. It takes a while to process 42 per cent extra multiplying exponentially. Especially when, like me, you feel and think in images, and words are a second language.

What floats to the surface of my consciousness on my mat this morning is fear. The kind that seizes your heart, yanks it up and takes your breath away. I’m afraid that this process is going to be ended before I’m ready. It’s something about being sloughed off that seems to have happened to me again and again: being taken for my surface, which appears more capable than I am, when really I could hold myself only by contorting and contracting, and ending up with a ribcage doing something like a double helix. I’m afraid that there isn’t time, and at all costs I have to beat you to it, because it’s shameful to be left behind and unbearable to be abandoned. I notice that, subtly, surreptitiously, I’ve started rushing and pushing and working physically where I can’t quite maintain it. It’s a bit painful, a bit over my edge. I notice that instead I could breathe, slow down, consider expressing a need and just resting – breathing – in the vulnerability of it all. I could stay soft and vibrant. It’s a possibility.

As an autistic person, I’ve always been panicked by neuro-normative timeframes; developmentally, I’ve spent a lot of my life running – futilely – to keep up (and now that I’m over 50, it seems I don’t know how to age like a neurotypical person either). I first became aware of the discrepancy between me and the neurotypical plotline when I started school. It was like being tossed to the wolves. I didn’t know any pack rules and neither did I have any innate capacity for learning them. It was also a multi-sensory overload of about 1,000 per cent. I ‘coped’ by cutting myself off, shutting myself down and not eating.

If this seems extreme, you may be underestimating the force of neuro policing and the stringency of the sanctions for non-compliance. Thoughout my childhood I had nightmares about living under tyrannical dictatorship – often by daleks or Nazis. I felt like an occupied country. The only way not to be killed under their thumb was absolute obedience. It’s the ultimate form of passing. They don’t have to destroy you; you obliterate yourself.

I realise on my mat that maybe this is some of why I was crying. After the last ribcage thing, I cried off and on for two days: an outpouring of grief that overflowed storm drains and leached into every crack and crevice. A cumulative grief of no fixed abode and no singular origin.

I’m grateful for the shoe-box, but I need to expand it. What’s happening for me is so much larger than the paradigm, and I can’t legislate for the depth and dimensions of the process. The first expanded container I emerged was a metal water tank – the kind of thing that might be in your back garden. You could keep a mermaid alive in a water tank. Just. But then, like the transformation scene in a high-end pantomime, it all began to change, and what started as two-foot-by-three-foot became an Olympic swimming pool. All that water! Now what could you do in a container like that?

Every time I negotiate for autism-friendly space I feel as if I’m going to die. It’s a swooping, heart-stopping rollercoaster of a feeling. I want to hold my breath and close my eyes. It’s as if I were seeking something that isn’t legitimate, rather than just room to be and to feel. It’s an extraordinarily vulnerable and frustrating place of wanting and testing and hoping and holding myself back. I often fear that there’s something manipulative in seeking structures in which I don’t have to distort or circumscribe myself in order to relate to you. There’s a dance I sometimes do in which I tie myself up in my own clothes. That.

It occurred to me recently – I don’t know why I hadn’t seen it before – that I have internalised a rigid set of what I take to be neurotypical boundary regulations, and that while a part of me swings willfully back and forth on creepers across the divide, another part brutally polices the borders. Underneath is a powerful distrust of my own native way of boundarying relationship. It often feels deeply and shamefully dysfunctional. I’m only just starting to know that, though it may look different from your way, I can actually trust it. And so can you.

I don’t know yet what needs to happen to the pieces of my heart. I imagine some sort of reintegration, but what or how hasn’t come to me yet. Maybe it’s in the swimming pool. They’re in a safe space for now.


A Safe Space is a place where anyone can relax and be able to fully express, without fear of being made to feel uncomfortable, unwelcome, or unsafe on account of biological sex, race/ethnicity, sexual orientation, gender identity or expression, cultural background, religious affiliation, age, or physical or mental ability.The Safe Space Network.

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.

Hacking off the Plaster

I’m told that my grandfather had a reputation for being the best plasterer in Portsmouth. I’ve inherited his talent for making smooth surfaces. Unfortunately, while it’s a gift, it’s also a curse. I’ve several times smoothed myself out so thoroughly I’ve almost obliterated myself.

Recently, my friend and sister in autism the poet Joanne Limburg brought to my attention the work of Ralph Savarese, writer, academic, (dis)ability activist and adoptive father of an autistic son. In his essay ‘The Lobes of Autobiography: Poetry and Autism’, Ralph Savarese discusses ‘Autie-type’, which he describes as ‘a highly poetic language that many non-verbal Auties produce spontaneously on their computers, whether in conversation or in actual poems’. I would suggest that it is not only nonverbal autistics for whom Autie-type is a first language, but all of us who are hyperlexic: i.e. for whom writing is easier and more natural than speaking; who have a better than average ability with the read and written word, but who struggle with processing and producing the spoken word, and sometimes experience mutism; and who express ourselves more effectively in writing than in speaking.

Some examples of Autie-type:

‘When I was little everyone thought I was retarded. The very hurtful easy lessons I attended were time spent away from the real world. Addition, subtraction, multiplication and division were subarctic activities. Treated as autistic, retarded, and sedated, I saw myself suspended. Ashamed, I seasoned this mind of mine. Wasting time beasts inhabited my very much lost, very sad boy’s head. Attempts to freshly respond to humans were terrifying quests through killer trees. Where I sent my real self, reasonable, easy breathing, satisfying humans never could find me.’

‘It’s practically getting possible to create satisfying life, interesting and meaningful nowadays because really institutions’ popularity slides towards storage underground at a pace faster than police chasing stepping for escaped prisoners … Nothing apartheids you like the insensitive world of institutional existence. Tapping well of silence with painting permitted songs of hurt to be meted with creativity … Without art, wafting smells of earth’s pleasures would kite away to land of inanimate objects, so it’s past point of personal hobby.’

‘The wave breaks, the bone splinters, and I roll like a planet, like a perfect pearl from the conduit into the shiny vista of my life. I am afraid of the sea. At night in the one-tooth domino house she breathes my susurrating dream. I am the spray on her curling tongue, the loose knot her fingers untie. Help! I have no edges. My atoms scatter on the wave; my cells disperse like seeds. And yet I also yearn for this dissemination, the webbing of the flesh unwrapped, the rags unpinned from the bones. Torn between desire and fear, I think I will forget I am the waves, and the incoming tide is the advent of my soul. I think I will exclude this difficult sea.’

‘Hope’ is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –

And sore must be the storm –
That could abash the little Bird
That kept so many warm –

I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.

The first passage is by Ralph Savarese’s son DJ, who I think was about thirteen when he wrote it (US ninth grade – Americans, let me know) and is quoted in ‘The Lobes of Autobiography’. The second, also quoted in ‘Lobes’, is by an autistic artist who had been institutionalised for many years. The third is by me, and comes from a longer prose poetry piece called ‘The Rib Cage’, about my experience of anorexia. I wrote it in my early thirties. The fourth is a poem by Emily Dickinson, whom many people consider to have been autistic.

I could say that reading ‘Lobes’ has been epiphanic for me, but that sounds too cool and white. When I first read DJ’s words, I didn’t know whether to laugh, cry or jump up and down. I was drowning in recognition. I couldn’t breathe. It exploded and landed on my chest. I walked around and around my house and banged the walls to let off some of the froth. The first coherent thought to bubble to the surface was, this is just how my first drafts read. And the second one was, no-o-o-o! When did I ever allow native speech like that to materialise on paper? It would be suicide. It would be inviting the sharks right in and saying, ‘Eat me now!’ No, this is the secret misty way words rise off images in the early morning of my mind. No one, but no one, sees my autistic speaking. I make too-damn sure it’s all joined up and in good neurotypical syntax before it gets anywhere near a page. Even a private one.

Ralph Savarese notes that autists are highly metaphorical – you don’t say! I know that in my case this is because I think in images. When I verbalise, I’m not creating metaphors; I’m doing my best to language as fully and accurately as possible (not very possible) the visual thoughts arising in my head. The doing is not in the metaphor but in the translation of the imagery into acceptable neurotypical-speak.

As Savarese explains, broadly speaking, metaphor arises from the right brain; broadly speaking, grammar and syntax arise from the left. (And it is broad, because there is enormous variation among individual brains, with some people having functions on the ‘wrong’ side.) In those online right brain / left brain tests, it’s no suprise to me that I always score as very predominantly right-brained. This is a fit with the hypothesis of the 1977 study cited in ‘Lobes’ which suggests that ‘autistic children process information predominantly by strategies of the right hemisphere from birth and, unless unusual events occur, continue to be right hemisphere processors throughout their life.’ Unlike DJ, though, I am definitely not also good at left-brain activities. Maths? Forget it. I float in a mythopoeic world, tethered by a fine thread to consensus reality. I pretend to go along with it a lot more than I really do. The sharks again.

Interestingly, word production is also lateralised to the left brain, which would explain why (although superficially I appear highly articulate) vocabulary retrieval is so difficult for me. It’s like one of those palm-sized perspex puzzles we had in the seventies, in which you have to shuttle the little silver ball through a series of shelves and ledges and out the other end. It’s fiddly and frustrating and it takes a lot of time.

I used to mask this difficulty – the way a stutterer covers for themselves by finding alternative words for those with their stutter trigger. I did it very skilfully. I don’t do it any more. I hate those cover-words with their lack of specificity and circumlocutions. I prefer to allow the little gaps and hiatuses; I prefer to let the wrong word come: a pet is a parrot; a parrot is a carrot; agriculture is agrimony (have to google that one – it may be a fully accredited word) … is acrimony, is crimson … Colours tend to leave me speechless – they’re so intense. In truth this is the stuff of poetry, of associative and out-of-the box thinking. And this is the way I don’t erase myself, the way I don’t deface the native beauty of my own arising but simply let myself be. Because actually, I’m no better than I ought to be, but I’m as good as you.

It’s easy to deface and erase yourself if you’re autistic, and hard to stand up and be who and what you actually are – all one hundred and extra 42 per cent of it (1). It takes a lot of courage and a lot of practice. Autism is a gift, but it’s the kind of gift bestowed by a bad fairy (always the best kind in the end). It’s like being given a dozen wild and furious horses to hitch to your carriage. You can break them if you like – if you want them to end up mean and bridled and dispirited. It’s taken me half a lifetime to whisper my horses, and it requires a huge amount of skill, experience and mindful attention to keep the carriage moving forward without rattling, jostling, spooked and hell-for-leather horses, and generally pitching everyone into a rut.

I’m really committed these days to disrupting surfaces. I want to know what we’re all made of. I want the materiality of lumps and bumps, coarseness and sticking out bits. I want the old bones, coins and broken tea-cups. I want what presses up out of the pores of the earth. I’m no longer willing to small myself down and fold it up in a box because I think it might offend you. I want to be full of myself. And there’s a place in being in which it’s all possible. A place of fluidity, in which we flow into and through and among one another without snagging and hitching, in which we roll off one another’s idiosyncracies, and it’s delightful. I know this because I learnt it on the dancefloor (another story), it flooded out into my life, and mostly I live in it now. It feels limitless and full of potential. It feels like the essence of love. It feels like the place where we can all truly meet. It feels like a dreamed of sea.

(1) According to a recent study, the resting brains of autistic children produce 42 per cent more information than those of non-autistic controls.

 

Bleeding words: I write about why it’s hard to write

There is nothing to writing. All you do is sit down at a typewriter and bleed.”―Ernest Hemingway

I may possibly not have the same relationship with bleeding as Ernest Hemingway. While I think he’s probably intending razor blades or knives, I’m getting tides, the moon and the leg-collapsing sensation of drawing down, an organic cycle that transcends choice, desire or need and isn’t very dramatic. But it’s true there’s nothing to this kind of bleeding.

And I really wish I could write that way. I really wish there were a running tap or a tide, because nothing to me is more perplexed, trammelled, stilted and stuttering than making the little ants march across the big white spaces. For me, writing is more like wading through waist-high sludge than opening a vein.

In that case, you might reasonably be wondering why I keep on trying. Byron (I love Byron – I don’t really like Hemingway) explained, ‘If I don’t write to empty my mind, I go mad.’ I feel that. I often empty my mind by moving these days, but it’s a different kind of emptying. Byron is right: there’s something cathartic in tipping out the trash can. At least then you can see what’s mouldering and mulching; it’s no longer silently doing its inexorable organic thing inside your head. There’s a satisfying sense of compensatory aesthetic control when the inchoate is mustered and corralled, penned into neat black lines and grammatical structures – even if all they really do is frame its essential wildness.

But for me it’s not enough just to quietly lasso a few horses. I have this desperate need to be heard, seen and truly apprehended, to know that I am not sifting away like sand through an egg-timer. It’s as if some maniacal little Führer in my head is constantly yelling, ‘Listen, all of you! Listen! Just listen! LISTEN!’ Because otherwise I don’t exist. I’m whirling and whirling away, down the plughole, over the event horizon.

So, start where you are and all that, I thought I’d excavate it a bit, this feeling: the wool in my mouth, the thick tongue, gagging, choking. Just why is it so fucking difficult? Just why?

The thing is, when I write, I do feel as if my life depends upon it, and it depends upon it being good – so I have very high standards. It has to sing for me; it can’t clunk or collapse with an exhausted sigh. Writing is something I do well or I don’t do at all – which you can see is a crippling position to begin from. Who the hell can write like that? Like it has to be perfectly finished before it’s even started?

In some ways, this urgency, this sense of life-depends-upon, begins in a response to my neurology. I think in images. I see my thoughts, all of them, and then translate them into words. A writer friend – neurotypical – once told me she was envious of what she saw as my ability to generate images in poetry. I wanted to explain to her that I don’t have to generate anything. The inside of my head is an overwhelming prolixity of multi-layered and inter-penetrating images. Images are for me the ground of consciousness. The difficulty is in sifting and sorting. It requires a huge amount of executive function, and if you’re autistic, you don’t have a lot of executive function.

The first time I heard an autistic person describe the way they think as a movie, I was puzzled. Why was this something that needed explaining? How else was there to think? I still find it difficult to imagine what it’s like to think in words or how it’s even possible. Words seem such a sophisticated product of consciousness, like an aeroplane or the iPhone, so removed from the primal mud of the source. How can they arise pristine and fully formed?

I love films (actual ones), especially when they create their own landscape and communicate mostly through it. They are for me a form of direct apprehension: visual to visual. It’s a jaw-unhingeing relaxation to inhabit this kind of instantaneous world in which meaning presses through the surface like colours in a dirty sponge and soaks unmediated into my consciousness. Sponge to sponge.

When I write, there has to be the interpolation of another surface, one that must be negotiated and surmounted, and with it comes a sense of impotence. The thing is, when you think in images, so much of everything that matters – detail, colouration, mood, tone, and a kind of slidingness between one thing and another that allows for multiplicity, for more than one thing to be true at the same time and for everything to be connected to everything else – so much of this slips though the spaces between the words, leaving you with something at best diminished, at worst tangential to its actual meaning or signifying absolutely bloody nothing.

I also feel in images. My emotional experience happens in intense, rich, brightly coloured moving pictures, saturated with metaphorical meaning. I am one of those autistic people who experiences an overwhelming amount of emotion (whereas others report feeling almost no emotion at all). There’s so much going on in here that I often feel in danger of drowning in myself, and I struggle to experience a sense of containment. Like many autistic people, I find it difficult to name and categorise emotion. Partly, this seems to be due to the sheer volume of it happening all the time. Partly, it seems to devolve from the fact that no words have been coined for many of the emotions I see-feel. They exist like outlaws beyond what is languaged, defined and accepted as a known emotional experience. I need fifty words for snow. These days, given time (I’ve practised a lot), I can usually match what I see roughly to a fully accredited word for a feeling, but it’s a very broad category that loses much of the particularity, aesthetic wonder and intensity of the actual emotion. It communicates a lot less than it leaves out, and this is mightily frustrating.

There’s something else too. It’s biographical. I came to dance, but in my family dancing was considered a bit like masturbating – embarrassing and better done behind closed doors. So while I was always a secret dancer, writing became my first public practice and discipline, the first expressive form where I was witnessed. It also became the dungeon where my dancer was tied up and hidden. While I have set her fully at liberty in the world (another story), writing continues to be freighted for me with the frustration, limitation, dislocation / relocation of something that is not my first means but which had to be reached for, manipulated into. Maybe that’s why dancing is indeed for me like Hemingway bleeding: an open vein, a running tap.

Just lately I allowed myself to notice something else: writing and reading are erotic experiences. It’s the name I didn’t name of that intensity of being intimately read – by school English teachers and onwards to mentors and lovers I’ve written to. While I was fiddling around, turning the compost for this article ­– writer’s fore-play, essential to the writing act – I typed some words I like by Matthew Remski:

Language is continually overflowing its consensus meanings … When we use it playfully, it co-creates with us. But when we domesticate it to a conceptual purpose, our most serious grammar and richest vocabularies become very fragile nets through which most of the world escapes.

And as I typed, I was overtaken by this swoony, vertiginous feeling, of one thing collapsing into another – time, space and personhood. And for a moment I could not quite recollect … Who do these words belong to? To me? To you? Where did they come from? And I wondered, do you press through into another person’s consciousness when you re-write their words? Do you? Is it like lying naked, mind to mind, but still essentially unknowable? Are words really sex? Did my family get it all wrong?

And somehow I waded through the mud to the end – and the bit of writing I really love: polishing, refining. I’m autistic; I’m a details person. I have no eye for the big picture, and the process of emerging a structure is laden with anxiety for me. I can’t always bear to stay present for it. It’s got better since I embraced the associative nature of my thinking. I no longer look for lines, but drop in a pebble and follow the rippling out. And the rippling out and the rippling out … until the ripples dissolve into a sort of stillness.

threads of yoga, Matthew Remski, 2012.