Look, we are here!

I just had to write another one of those comments on a well-intentioned but oh-so inappropriate social media post by a neurotypical yoga teacher about teaching autistic children:

As an autistic person, I’m feeling uncomfortable – once again – at being discussed as if I’m not here by neurotypical teachers. I don’t find it acceptable for all of you to be talking about us as if no one autistic could possibly actually be here and teaching ourselves. If this discussion was about white teachers teaching black students, or straight teachers teaching gay students, or male teachers teaching female students, how would it sound to you, and how is neurological status any different?

The problem in this case wasn’t so much the content, which wasn’t too bad, it was the actual and implied pronouns – the ‘we’ here and the ‘they’ there, and never the twain shall meet. Obviously ‘they’ are away rocking and spinning in a corner.

There are many autistic yoga practitioners. I guarantee that there will be one or two of us in any medium-sized general yoga class. A significant number of yoga teachers are also autistic. Many have not yet put together the two and two of their social and sensory experiences and made them into four. Others have embraced autistic identity but remain in the closet. Autism continues to be highly stigmatised and widely misunderstood.

The response from the posting teacher was along the lines of, ‘I’m sorry you feel upset’. But I don’t feel upset, I feel angry – incandescent with lava-hot rage. What’s so hard for NT teachers to understand about this situation? Neurotypical teacher, you march in in your three-mile boots, but do you really have permission to be an author here? And all of you other neurotypical teachers who ‘like’ this post and chime in with your expriences of helping the poor dear autistic children and how great an experience it was for them … how about shutting up and amplifying the voices you are talking over? Let’s hear from them how great it was. Or not.

Have you ever been minding your own business in a toilet cubicle when two people come in talking … and with slow horror you realise that they’re talking about you? The hot shame. The confusion. Do you hide and have to hear it out? Do you stop it and speak up … and then you know … that they know … that you know. Maybe you’re a yoga teacher and they were talking about your class. (Most yoga teachers have had this experience.) That’s what it’s like when I come across one of those neurotypical-person-opines-on-autism threads.

I know that if I speak up, I’ll be spoken over. If I’m lucky, there may be another out autistic person or two on the thread. Or there may be a teacher of colour who recognises something of their own experience and offers some intersectional support. (I always try to do that the other way round.) I know that I’ll feel ashamed, and exposed like the lone soldier on the parapet. I know that I’ll take a hit to my mental health and it will require time and energy to recuperate.

‘Nothing about us without us!’ has long been the watch word of the autistic self-advocacy movement. (1) You do not own the rights to our experience. It isn’t for you to tell us what we need, and if we want other neurotypical people to know, we can tell them ourselves. We keep communicating this to you, but you do not hear it. Are you listening now? Are you actually listening to this? Please stop appropriating from us. Please cease and desist. Please evacuate our space and give us back the megaphone.

Image: Patrick Fore.

1. Originally the title of a book by James Charlton and taken up by the disability rights movement.

Xanadu: Mrs Burton’s class – a tale of autspace

In Xanadu did Kubla Khan
A stately pleasure-dome decree:
Where Alph, the sacred river, ran
Through caverns measureless to man
Down to a sunless sea.

Looking back, it’s clear to me that Mrs Burton was autistic. But this was 1972 and we didn’t yet have a word for ourselves. We didn’t have an ourselves. Mrs Burton lived in a bungalow in Gudgeheath Lane. The garden was overgrown and full of rescue animals. The year before I was in her class, Mrs Burton rescued a lamb from a slaughterhouse and somehow managed to keep it in the school field. Perhaps it wasn’t so hard. This was long before OFSTED was thought of, and the notion of a standardised primary school curriculum was still dystopian. Our headteacher was a socialist who ousted Christianity in favour of classical music at assemblies. Once, for a few experimental weeks, he instituted the Summerhill system¹ and we chose which lessons to go to. The lamb was called Larry.

Mrs Burton lived in an amorphous middle-ground of age. She wasn’t young, but she wasn’t old. I suppose in actuality she might have been in her early forties. She wore shapeless tweedy skirts that finished just below the knee, loose blouses with blouson necks and floppy ties, the ubiquitous tea-coloured tights, and flat shoes. Her dark, straight hair looped over her ears and around the back in a kind of shambolic Victorian bun. I remember her with dog-brown eyes – sharp but not unkind. However, I may have made that up.

I didn’t especially love, or even like, Mrs Burton. What’s remarkable about my time in her class is that, for the first time in my school life (I was nine), I felt comfortable. It’s hard to convey how extraordinary and unfamiliar an experience that was. I gave no thought to this at the time, only I remember once trying to explain it to my mum. It came out much smaller than it felt, and I could tell she was puzzled. I described it, I think, as being at home in Mrs Burton’s class, feeling that I belonged. I understand now that this was because in subtle, silent, unspecifiable ways, Mrs Burton’s classroom was autistic space. She didn’t try to make it that way. Inclusivity hadn’t been invented yet. It was because she was.

I still remember the geography of the tables in Mrs Burton’s classroom. They were were anchored like continents in a stable and unshifting world. I sat at a long one – two tables placed end to end – near Mrs Burton’s desk. I was on the desk-ward side, and there was a window several chairs down to my left. I moved to another, big square table, to learn about evolution – fish crawled out of the swamp onto a land forested with enormous primeval trees; stegosaurus gave way to brontesaurus, to tyrannasaurus rex; proto-people crept out of the undergrowth with stones. There was a new and thrilling cassette-tape episode every week.

We must have done maths with Mrs Burton I suppose, but I don’t remember any. In my memory the classroom thinned and cleared repeatedly around pools of fantasy space. Mrs Burton read us magical books like The Weirdstone of Brisingamen and The Wizard of Oz. She read us Coleridge’s opium-inspired ‘Kubla Khan’, probably not generally considered an appropriate poem for nine-year-olds, but I loved it. I didn’t completely understand the words, but I absorbed the music of the language, and I intuited meanings that underlay the literal one. ‘Kubla Khan’ still loops through my head from time to time.

It’s hard, it seems, for allistic² people to understand how – and how much – autistic people are excluded. This is, in my experience, particularly in-your-face and frankly fucking horrible in the happy clappy world of alternative practices. Serendipitously, while I was writing this piece, I came across the work of disability activist Mia Mingus. Mia blew my mind. She had not just words, but formed thoughts and cogent sentences for something I had dimly sensed, experienced constantly, but never been able to knead out of flour and water into the useful consistency of dough. Mia coined the phrase ‘access intimacy’. She says:

Access intimacy is that elusive, hard to describe feeling when someone else ‘gets’ your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.³

In Mrs Burton’s class, I experienced access intimacy.

In 2017, school regulation makes it difficult for an autistic teacher to survive, never mind thrive. Our genius is at the back of the room doing it differently. We don’t / can’t / why would we want to? stick to the manual. Autistic children in the UK can now be diagnosed and statemented, and should, in theory anyway, receive specialised help to negotiate school, but they’re unlikely to experience the kind of truly autistic space I lucked into in Mrs Burton’s class.

This is not just a celebration of a single teacher, but a paeon to the whole awkward, eccentric tribe of us who’ve thrown away the instruction book and are spinning it out of our own bodies like spider web. The best autistic spaces are strange, capacious, ingenious places where it’s safe to be. They inspire. They contain but they don’t constrain. They’re vast in their scope and particular in their attention to detail.

Mrs Burton loved words and, being autistic, could get a bit pedantic about them. She told us when we wrote a letter we should never contract our county name to the awful ‘Hants’ but should allow it the full expansion of ‘Hampshire’. I think she’d like that I write. I hope she’d be pleased that I’m writing about her, but I think she’d probably be a bit embarrassed.

I wrote this piece as an assignment for the Open Floor teacher training.

1. Summerhill is a British school run on democratic principles that had become notorious in the seventies as an establishment of mayhem and misrule following the publication of A.S. Neill’s book Summerhill School.

2. Allistic: ‘non-autistic’.

3. Mia Mingus: https://leavingevidence.wordpress.com.

Yin Yoga and Hypermobility

In the small but growing conversation about yoga and hypermobility, there has been quite a bit of interest lately in yin yoga and its suitability – or not – for people with Hypermobile Ehlers Danlos, Syndrome, Hypermobility Spectrum Disorder and Marfan Syndrome (hEDS / HSD / MF): the hypermobility syndromes. And if it is suitable, whether it needs to be modified. And if it does need to be modified, how.

First off, let me say that I am neither a doctor, a physiotherapist, a scientist nor any kind of expert. What I know about yoga and hypermobility is experiential. It arises from 35 years of practising yoga in a hypermobile body and 18 years of working with hypermobile people as a yoga teacher. Among other things, I am a yin yoga teacher – I trained with Paul Grilley – though what I offer these days is mostly a restorative form of yin.

I’ve come across some fairly dogmatic opinions about yin yoga and hypermobility, and I don’t want to add another one. I feel that it’s inappropriate and pointless to pronounce on what another person’s practice should or shouldn’t be. This is something that can be known only from the inside. An authentic practice emerges, resonates, informs, pleasures. It has the capacity to repattern and recalibrate on a whole-person level. It leads us into the centre of of our experiences and reveals increasingly subtle sensations, emotions, and mental and nervous system activities, so that over a period of time, the practising body becomes an ever more intelligent system. This is an intimate and personal process, and it remains the exclusive property of the person experiencing it.

HEDS / HSD / MF is a grouping of – very many – genetic mutations, a few of which have been identified, the majority of which have not, all of them causing laxity and fragility in the connective tissue. When we think about connective tissue, we tend to imagine ligaments and fascia, but in fact connective tissue is a major component not only of the musculo-skeletal but of all body systems (vascular, reproductive, urinary and so on), and a person with hypermobility can experience the consequences of having ‘different’ connective tissue in some, all or many of these systems.

It’s evident from reading forum posts on yin yoga and hypermobility that some people assume yin yoga to be a generic term for a gentle form of hatha yoga. No wonder, then, that they are puzzled as to why this kind of yoga might be inadvisable for a hypermobile body. So to clarify, the yin yoga that we are talking about is a specific form originated by martial arts master and yogi Paulie Zink,¹ developed by Paul Grilley, and popularised by Paul along with second-generation teachers such as Sarah Powers. Bernie Clark, author of The Complete Guide to Yin Yoga, describes yin like this:

Most forms of yoga today are dynamic, active practices designed to work only half of our body, the muscular half, the ‘yang’ tissues. Yin yoga allows us to work the other half, the deeper ‘yin’ tissues of our ligaments, joints, deep fascial networks, and even our bones.

In yin yoga we do this by holding a passive extension for a long time (about five minutes on average, but sometimes less and sometimes more). Paul Grilley explains that the nature of fascia is contractile. If we don’t counteract the contractive process, as we age, the fascial wrappings around our joints, muscles, internal organs and whole body beneath the skin, become progressively tighter and more restricted, often along distorted planes that affect our capacity for functional movement. The theory is that fascia responds to long, slow stretching by lengthening and unkinking. Gentle stressing in this way, according to the yin yoga paradigm, also makes the fascial tissues stronger (in much the same way that doing repetitions with a bar bell strengthens the biceps by causing muscle fibres to break down and rebuild).

If stressing / stretching connective tissue is central to yin yoga, and hypermobile connective tissue is delicate and already lax, it’s easy to see why there might be concerns about the suitability, helpfulness or even safety of this practice for a hypermobile body. But are these valid? In practice, I have taught hypermobile people who love yin yoga and find great benefit in practising it, and I have taught hypermobile people who have found they get overstretched and injured by yin and avoid it like the plague. Eva, Liz, Micky and Deborah say:

In yin classes I was always told to let go, yield, etc. If I let go in paschimottanasana or a split, I go to the maximum of my flexibility and it will either increase my hypermobility or will give me an injury. I’ve tried different approaches to yin, such as strengthening some muscles or not letting go completely, but I don’t think this is really yin yoga and I don’t find these approaches relaxing.

I think it’s important that we each find our own safest practice. For me, a mindful modified yin practice is very nourishing. But I do not dislocate and most of my [other] practice focuses on building strength.

I find yin extremely beneficial. I like the fact that with yin you work passively. I’ve noticed that every time I practise yin, it alleviates the usual aches and pains that I get during my morning astanga self-practice. It helps with letting go of emotional and therefore physical tension, and it’s great for the parasympathetic nervous system. Often a practice like astanga can create an accumulation of tension, and yin has taught me to let go of the subtle tension, or at least to be aware of it.

I love yin yoga, but I am getting to the opinion that yin doesn’t like me very much, especially when I have some damage somewhere. The stretching feels soooo good, but I’m pretty sure I over-stretch something that should be healing. And moving out of the posture can be really painful. Also, even on the good days, I do need to engage a few more muscles than classically you should do, particularly in my hips and core, to stop me collapsing as the ligaments relax.

In my own experience it’s observable how my responses to yin practice have shifted across different phases of my life. I used to practise yin fairly regularly – for a while every other day, and then about once a week. A year or two ago, I stopped doing yin altogether. The practice itself usually felt fine, but on several occasions afterwards I had been in pain – probably as a result of some torn muscle fibres, or muscles spasming to protect a joint. Lately, though, I’ve noticed that the balance of flexibility in my body has changed as a result of not having yin in my movement repertoire. I wondered if this is contributing to issues in my hips and pelvis, and I have re-introduced some yin practice. In the meantime, I have also experienced some significant shifts in my somatic and proprioceptive understanding, and it seems as if now I may be able to re-encounter yin in a more creative and adaptive way. Our bodies change over time, as does our capacity to understand and integrate the subtleties of different practices. Some we outgrow, others we grow into, and sometimes a practice we thought we had outgrown may become available to us on a level that we hadn’t realised existed.

Paradoxically, while too much yin can cause muscles to go into spasm, just enough yin can also help to release a spastic muscle. Most people assume that a hypermobile person will present as extremely flexible – and we often do – but where hypermobility has been accompanied by inactivity and deconditioning, and widespread muscle spasm has gone unchallenged, the person may be very, very ‘tight’ – although they will still often have tell-tale hyperextending joints, sometimes with subluxations and / or dislocations. In this scenario, a modified yin practice could be very useful, probably with shorter than the usually recommended hold times (over-stretching will cause muscles to go into even tighter spasm, remember) and with very carefully targeted work. An experienced teacher can help the person to avoid flopping into familiar and already overstretched areas, and instead to access areas that may have gone offline, so that more functional, less painful movement patterns can be established.

This kind of specificity in where and for how long I work is crucial to me in practising yin in a beneficial way. It’s complex and it isn’t usually within the capacity of a beginning yoga practitioner, or a practitioner who is only just discovering and coming to terms with their hypermobility. I rely on a lot of knowledge that I’ve emerged from working with a very good physio. I also don’t completely relax in postures, but prefer to squeeze and release and press into certain muscles and to relax into others.² This way I can stay selectively engaged. As an autistic person, I find this approach a lot more satisfying too.³ Like Eva, though, I think it’s questionable whether this way of working is really yin any more, since yin is essentlally defined as a passive form in which we follow the bones, follow the line of least resistance and let go into the joints.

Although yin is a passive form, it’s not necessarily gentle. Most yin postures have fearsome potential as stretches, and if practised to an extreme in terms of range of movement and duration can be highly agressive to ligaments and tendons. And herein lies one of the gifts of yin. It has important lessons to offer about edge: where is too much, where is too little, where is the sweet spot that holds the potential for expansion into our experience in all dimensions – physical, emotional, mental, transpersonal? This is an especially important learning for a hypermobile person because a deficit in proprioception is part and parcel of hEDS / HSD / MFS. While we are innately endowed with limited proprioceptive resources, we can work with what we’ve got to cultivate our capacity to feel into and differentiate between edges. If practised with sensitivity and appropriate intention, for some people yin yoga can be a fertile terrain for this exploration.

One possibility for making yin yoga safer and more user-friendly for hypermobile people is to give it restorative slant. Micky described his yin practice to me as partly restorative. Eva and Ellen say:

After years of practising yin yoga and not having a clue what I was supposed to do or feel with my body, I’ve come to the conclusion that we hypermobile people should do restorative yoga rather than yin. I am convinced that the only way to do it safely and really let go is with the use of props.

The only yin that works for me is supported positions that don’t involve a stretch. Probably technically more restorative yoga than yin.

In restorative yoga the emphasis is on comfort and ease rather than stretching. Soft props such as bolsters and blankets support the body, and we slow right down to access the parasympathetic nervous system, creating opportunities for rest, integration, and physical and emotional healing. Clearly the potential for traumatic injury to myofascia⁴ is far smaller in this scenario; however, even a restorative practice can go pear-shaped for a hypermobile practitioner if they are already biomechanically out of kilter. Bear in mind that for many hypermobile people, sleeping is a high-risk activity. Those most severely affected may need to wear splints and braces at night to keep their joints in a neutral position; most of us are accustomed to waking up with joint and muscle pain. Restorative yoga can be counter-productive where fascial laxity is such that when the person lets go (allows postural muscles to switch off) they collapse into positions that distort the joints. Often in this scenario the resting position is further compromised by dysfunctional muscle patterns, in which some muscles are very tight and unable to release, whereas others are completely switched off and unable to fire, so that the person is biomechanically lopsided. In this situation, structural repatterning work (with a suitably skilled physiotherapist, yoga therapist or other structural bodyworker) may be of most benefit.

There’s more to yin yoga than stretching, though. Yin is also a meridian system. Paul Grilley explains:

Spiritual adepts from the earliest times have described an energy system of the body that is vital to its health. In India they called this energy prana and in China they called it chi. The Chinese Taoists founded the science of acupuncture, which described in detail the flow of chi through pathways they called ‘meridians’. It is chi, in all its forms, that keeps us alive.

Central to Paul’s approach to yin is the work of Dr Hiroshi Motoyama, a yoga-practising shinto priest who is also a double PhD scientist with a long track record in researching the science of bodymind. Motoyama’s work suggests that the meridian system is located in fascial tissues. Another well-known researcher in the field, Dr James Oschman, explains:

All movements, of the body as a whole, or of its smallest parts, are created by tensions carried through the connective tissue fabric. Each tension, each compression, each movement causes the crystalline lattices of the connective tissues to generate bio-electric signals that are precisely characteristic of those tensions, compressions and movements. The fabric is a semiconducting communication network that can convey the bioelectric signals between every part of the body and every other part.

If this is indeed the case, the implications for hypermobile people – those of us who have a different sort of fascial tissue – may be immense, complex and wide-ranging. As far as I’m aware, these possibilities have been discussed little if at all. Maybe it’s still all a bit woo woo for the majority of people to contemplate.

I’m often asked if I can give guidelines for working as a yoga teacher with hypermobile people. I can’t. While it’s possible to make some suggestions as a starting point (I already have – you can find them here), the way hypermobility presents is very individual, and it’s really necessary to encounter and be in collaboration with the particular hypermobile person in order to offer anything meaningful. Some people with hEDS / HSD / MF are almost unbelievably flexible and able to perform the most mind-bending contortions with no pain or other unwanted complications even into later life. Others may not have such breathtaking mobility but suffer from very debilitating fertility issues, digestive problems, chronic pain, sleep disruption, anxiety, prolapses, incontinence … Perhaps to some extent this diversity is due to the range of different gene mutations involved in hEDS / HSD / MF, although, of course, there are many factors that determine how our genes express. When I’m working with a hypermobile person, I do my best to let go of theories, pre-formed solutions and paradigms, and approach with beginners mind and waving antennae. I use my eyes, and I rely on the body of experience I’ve accumulated, but it’s also through my hands, my skin, my nerve endings and that intuitive sense that lives who-knows-where in my body that I feel into what might be this biomechanical system, this emotional experience, this nervous system response, this neurology.

Yin yoga and hypermobility: good thing / bad thing? I don’t really know. It all depends. I do feel that that yin yoga as a practice is sufficiently rich, alive and malleable to be different things to different people, that there’s enough elasticity in it to allow for varying slants and approaches. If a practice attracts you, I’m all for wriggling through the wire and finding a way in.

1. I’ve never met Paulie, but he looks pretty damn hypermobile to me. Check out the pictures on his website.

2. This is pandiculation (yawning or the kind of intuitive stretching we do when we wake up). There’s an interesting article here.

3. It’s well recognised by autistic people and by those who work with us at grass roots level (especially with children) that there is a significant intersection between HMS / EDS and autism. However, there is a reluctance among medical professionals to acknowledge the relationship because there is little, if any, scientific research on the subject – and if there’s no research, it doesn’t exist, right? Autistic people generally don’t do well with physical stillness. We need to move in order to regulate our nervous system – after all, this is what stimming is all about.

4. The interwoven complex of fascia, ligaments, tendons and muscles.

References
The Complete Guide to Yin Yoga: The philosophy and practice of yin yoga, Bernie Clark, White Cloud Press, 2012.

Yin Yoga: Outline of a quiet practice, Paul Grilley, White Cloud Press, 2002.

‘Being Flexible About Flexibility’ is a good article on hypermobility, flexibility and yin yoga by my friend and colleague Norman Blair.

My very good physio is Darren Higgins at Vanbrugh Physiotherapy Clinic.

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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.

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.

What’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.

New mats / old mats: a shala story of feeling, speaking and gratitude again

At Stillpoint Yoga London, where I practise, it’s been getting busy lately, which has prompted a rearrangement of the mat layout. The way the mats were before, I could be pretty much anywhere in the room and have my back to a wall and the door in my sightline, and I could see everyone in the room. There was no unpredictable movement behind me and no surprise engagement with teachers. None of this is so any more.

When I first arrived at Stillpoint, I think perhaps some time in 2011, I’d been practising alone for the previous few years.¹ My longtime teacher had moved away from astanga, and my other trusted teacher in London was too far away to get to for early-morning practice. It was also clear to me that in the context of a teacher relationship I was not able to articulate – or most of the time even feel – my own needs or clearly hold my own boundaries. At that point, I had also recently become aware that I was in a state of ongoing low-level traumatic stress, and I had started to find ways of creating a more fluid and responsive relationship between sympathetic and parasympathetic nervous systems, but I didn’t yet have any useful awareness of autism and I didn’t understand why it was that that the cat had got stuck up a tree and needed the fire brigade to get it down.

So in 2011 or thereabouts, just stepping into the room at Stillpoint felt like – and was – a huge risk. It was possible because Scott told me he was willing to have me practise without offering any teaching or adjustment. He did what he said, so there was a basis to trust the situation, and we started from there.

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Most people don’t notice that I’m communication impaired, but I really am. Several years ago, I lived for a while with an autistic partner. We started out on opposite sides of the Atlantic, so we did a lot of emailing. But even when we were sharing the same house, we continued to email each other when we had something important to say, or just because we wanted to. When I told neurotypical people about this, they often thought it was funny, but many of us on the spectrum communicate a lot more easily in writing than in speech. It’s called hyperlexia. My capacity to think verbally, and then actually to articulate the words, has increased exponentially over the years, but there are still woolly, strawy things that get stuck in my mouth and will not enunciate. Incapacity to speak creates panic, and panic creates more incapacity, which creates more panic … and in extreme situations I can end up completely mute.

I was reading an article earlier this week called How to Explain Autism to People. The article lists several communication differences of autistic people, but I was particularly struck by this one, as it’s very significant for me and I’ve never seen it named before.

• Difficulty expressing needs and desires.

And it occurred to me that when it comes to self-advocacy, this one is such a double whammy.

Self-advocacy is hard. It requires a big vision and a willingness for something like delayed gratification, because in the short term it’s much easier to suppress, hide, conform and look as if you’re coping – don’t rock the boat: the sharks are out there circling – than it is to acknowledge and communicate real feeling. But I know from experience the cumulative effects of decades of containing and managing and never expressing a need or asking for help. it’s a world made of of hard surfaces. You shut down. You become a series of infinitely smaller images receding inside yourself. I have made a commitment not to do that any more, because it’s highly self-destructive, and I actually want to inhabit myself fully and openly, not fizzle like a Disprin or go away and live in a cupboard. This means, one, that I can no longer ellide my difficulties; I can no longer look obliquely and think I’m doing OK; and, two, that I have to find ways, ongoingly, to communicate my actual experience to other people and negotiate for what might make things a little more workable.

Which is why, even though I didn’t want to do it, some kind of communication around the New Mats at Stillpoint felt like a necessary act of presence. As in: I could (a) sit down and shut up and erase myself a little bit further or (b) actually speak something that feels true. So I did (b), I’m not sure whether well or appropriately (this kind of ongoing self-doubt is part and parcel of being autistic and therefore not very atuned to social cues) – or actually what doing it ‘well’  or ‘appropriately’ would look like. I don’t know yet what, if anything, I need to emerge in this particular situation in practical terms. But I think none of that really matters if there’s a genuine mutual intention to deepen relationship and expand understanding. Relationship is always kind of clunky, and it’s process, not a resolution.

If I looked disabled, I think in some ways advocating for myself would be easier. I often feel as if people think I’m making it up. Sometimes even I feel as if I’m making it up. I’ve written a lot already about passing. Studying and mimicking neurotypical communication styles became a survival mechanism for many of us with autism before we were old enough to be cogniscent of what we were doing. Passing is a form of self-displacement – we pass successfully when we cannot be recognised as ourselves – and it’s invidious. It also generates a state of chronic anxiety. We’re always waiting for the mask to slip, and at some point it inevitably does. The sanction for slippage is public humiliation and being left out on the mountainside for the wolves.

I’m actually rather good at passing, but it’s that cupboard again, and it’s small and claustrophobic. At this point in my life I’m choosing instead to cultivate my capacity for agitation and crying and losing the words and letting all the joins show. It feels like an honest and direct way of talking to you that I think some of you can understand.

Or, at least, I’m trying. It’s like restoring an old work of art. I no longer know really whether this bit of the picture was originally blue or green. I’m lifting off tiny flakes of paint one by one with tweasers, but the painting is so old to me now that I don’t always recognise the original any more. I don’t know how I really speak, or when I don’t, or whether that is a distant clutch of trees or there’s a bird, or is that an accidental splodge or a much later traveller another artist entirely painted in?

The elemental force of my reaction to New Mats was huge and overwhelming and barrelled in completely left field. It picked me up and shook me around, and I had no idea when it was going to put me down or whether it has yet. Fundamentally, though, I trust the relationships I’ve developed with Scott and with Andy enough to risk letting myself be. One of the themes of my writing lately has been saying thank you to people who hold space for me in the realms of the body and somatic process, so I want to say thank you – very much – to Scott and Andy. I’m way beyond grateful when someone is willing to stay with me and witness what’s evolving, even when it’s itchy and antsy, because if it’s real, it often is. For me, teaching yoga isn’t so much about instructing asana as it is relational. We are all learning how to be more fully and honestly with ourselves, with each other and in community, whether in the moment we are in the role of teacher or of student. At Stillpoint, this feels embodied in the teaching and in the relationships within and around the shala. And that’s why, even though I don’t like New Mats, I’m trying to work with them.

Stillpoint: Old Mats. I am foreground right. © SYL.

1. There’s a lot of essential learning in being your own teacher that you can’t get any other way. I wrote about it here.

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.

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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.

 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 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.

I’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.

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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.

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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.