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.