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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thinking in Pictures, Temple Grandin, Doubleday, 2006.

Empathy, Sarah Schulman, Arsenal Pulp Press, 2006.

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

Closets

Earlier this year, I was diagnosed with autism by a ground-breaking psychologist who is also a foremost advocate for and supporter of autistic women and girls. In parting, she warned me that many people harbour misapprehensions about those of us with autism. She suggested that rather than use the A-word, I could explain, ‘I’m the kind of person who … gets overwhelmed in social situations / functions poorly in bright lights and noisy places / needs a lot of time to process their experiences …’

Well, I’m the kind of person who likes to call a spade a spade, so I went straight to facebook to publish my new status. I also updated my professional website, identifying myself as autistic and welcoming other people on the spectrum to the different opportunities I offer to move, feel and witness. I’m the kind of person who occupies her own territory. So far, I haven’t experienced any sort of adverse reaction. I’m fortunate in the circles I move in and the kind of work I do.

As a queer woman, I was already well acquainted with the issues pertaining to closets, the ins and the outs and the intermediate positions. It’s a dance of complex, improvised choreography, in which we are always on the back foot coming forward. We are the torn out pages in the dominant narrative. ‘Everyone’ is straight, aren’t they? Just as ‘everyone’ is neurotypical, and the onus is on the rest of us to stand up and declare ourselves.

I’ve never had any time for closets. They’re too damn small and claustrophobic. I want to inhabit the full expanse of myself in the world, and I want you to see me doing it. In my view, if I tell you I am queer or I am autistic, and you have a problem with this, you have a problem.

But some closets feel more insidious and more difficult to emerge from, like the one constructed around my relationship with eating, which, from the time I started school up to now has run the gamut of pretty much every form of disorder other than bulimia, and that wasn’t through want of trying. Over the years, the extremes have gradually worn themselves out, along with the consuming guilt and the operatic drama. I know too much to want or to be able to sustain anorexia as a position or to find myself eating white flour and water at two in the morning when all the shops are closed. I used to feel a lot of shame about my crazy, disorderly eating, and now I really don’t any more. But still, I can’t claim even now – even by the fuckaroo standards of the culture I live in – to have a simple, untroubled relationship with food.

Until I started reading women’s first-hand accounts of what it’s like to be autistic, and the penny clattered to the floor, I was always puzzled by the violence and persistence of my eating behaviour. It seemed to be impervious to insight, therapy, mindfulness, moving, drawing, writing, processwork … According to some recent research and to anecdotal evidence, around two-thirds of women and girls diagnosed with an eating disorder also meet the criteria for autism. The driving need I feel alternately to establish control and to smash it apart now feels characteristic of autism and therefore rooted to a large extent in neurology rather than the presumed psychological dysfunction that I have spent so much time and energy trying to identify and resolve.

Yo soy la DESINTEGRACIÓN (Frida Kahlo)

Yo soy la DESINTEGRACIÓN (Frida Kahlo)

I don’t have much sense of physical containment. This seems to be the product of both autism and Hypermobility Syndrome (which affects many, but not all, autistic people), in which there is a deficit of proprioceptive feedback, so it’s hard to feel where I end, to formulate myself into a discrete, impermeable whole and hold all my pieces together. Controlling myself provides a means of encompassing myself and my experience, which often feels overwhelming in amount and intensity. Unleashing chaos offers a way of piercing the tension when it becomes unbearable. This may be a given; it may not be susceptible to change.

Above all I desire to be truly known. At the same time, by virtue of what I do for a living, I’m aware that I am often the recipient of a variety of wide-of-the-mark projections from clients and students who want to believe that a yoga or movement practice is going to beam them up out of the steaming shit heap of their own life. If you are one of those people, I have to tell you frankly that in my experience, practice is more like the fan in the axiom. What actually happens is the shit hits and you get to be more intimately acquainted than you ever thought possible with what comes out of your own arsehole. And this is the thing of beauty, this its very self.

What has tended to happen for me, what offers some loosening and breathing space, is that I have become quite a bit less reactive to my own shit. Because what’s the big deal anyway? We all shit, don’t we? It’s really very human. I haven’t stopped shitting, or being queer or autistic, or being perplexed by my other than shiny-magazine-paper relationship with food. But I feel that in some much bigger picture all of this is OK, just OK.

Since I have written publicly about being autistic, several people in my practice communities have confided privately that they too have a diagnosis of Autism Spectrum Disorder. I feel sad and dismayed that autism still carries such stigma that the majority of them are unwilling to be openly autistic. So if being an out autistic weren’t vital to me because it’s the way I can be truly myself and clearly seen as who I am, it would still be very, very important because if we each own and speak ourselves, as honestly as we can, in all our dimensions – and especially those of us who are teachers, facilitators and therapists – together we become a body of living, breathing practice that others can be received into. No one has to become more perfect than they already are, and healing can be what I think it mostly is, an expanding sense of acceptance, rather than a surreptitious self-improvement project.

Look into my eyes: autism on the dancefloor

A 2011 fMRI study … found that the brains in a sample of high-functioning autistics and typically developing individuals seemed to respond to eye contact in opposite fashions. In the neurotypical brian, the right temporoparietal junction (TPJ) was active to direct gaze, while in the autistic subject, the TPJ was active to averted gaze … The study found the opposite pattern in the left dorsolateral prefrontal cortex: in neurotypicals, activation to averted gaze; in autistics, activation to direct gaze. So it’s not that autistics don’t respond to eye contact, it’s that their response is the opposite of neurotypicals’. The Autistic Brain, Temple Grandin (Harcourt Miffflin Harcourt Publishing Company, 2013).

A few weeks ago. I am on a 5Rhythms dancefloor. It’s near the end of the dance, and here it comes again that instruction: look into your partner’s eyes. But a couple of things have happened since the last time I was asked to do this. One: I have a diagnosis of Autism Spectrum Disorder (ASD), aka Asperger’s Syndrome, aka autism. (I prefer ‘autism’, because whereas ‘ASD’ and ‘Asperger’s’ are a having, ‘autism’ is a being, and I am autistic.) Two: I have recently got to this passage in Temple Grandin’s book.

While it isn’t natural for me to look into another person’s eyes, like most older women with autism, over the years I have trained myself to hold all sorts of gaze, in all sorts of different situations, in neurotypical-mimicking ways, so on a purely technical level, I can do this exercise really well – better than many neurotypical people. But the thing is, my gaze is a very skillful forgery – so skillful that unless you know what you’re looking for, you’ll never spot it.

After a minute or so of eye-gazing, I see that my partner’s eyes are beginning to tear up. And I am feeling …  at first it seems nothing … but if I stay with myself and keep watching … there it is: I feel pinned, like one of those asphyxiated butterflies impaled on a tiny cushion. I feel incandescent with fury, hot little flames licking up my belly, because once again I have been compromised, manoeuvred, forced, and the only way I know to break through this fakery and blast my way into truth is to get up and walk away … but this is such a fundamental transgression of a human – neurotypical human – rule of intimate engagement that I do not dare. And, yes, it would be one hell of a dance, but if you have ever been in a minority, if you have ever felt the weight and surprising omnipresence – look, it’s even here inside me! – of the arm that polices, you may understand why in this moment a few weeks ago, I cannot stand up and do that dance. So I am left with this nasty-tasting insinuation, this snaky voice in my head, whispering that I am all wrong and that you, neurotypical person, are all right, because you have the tear of the majority in your eye, and the way my brain is wired, this isn’t intimate.

My capacity for social interaction is limited. It’s an effort for me, even now, after decades of practice, to read the signals, and I quickly become exhausted and overloaded. One of the reasons I gravitate to the dancefloor is that, by and large, it offers me an opportunity for engaging with others that bypasses the social and moves directly into a space that I can read and negotiate with fluency. This is a place beyond what can be spoken, beyond the mask of social expression, a space that drops suddenly and sheerly, deep into the hinterland, the silent wilderness of emotion, of a wordless bodily knowing of which thinking mind is mostly unconscious. This is my natural habitat. It’s the place where the real me lurks, half-concealed in shadow behind the social forms. It isn’t a place I choose to live – though I wouldn’t choose to live anywhere else – does a lion choose to live in the jungle or a fish in the sea? It’s a habitat written into my genetic code.

My capacity for intimacy is profound. I have no doubt about that. I have had two relationships with people who, in hindsight, I recognise to be autistic. We never looked into each other’s eyes. It wouldn’t have occurred to us. But I experienced a depth and detail of intimacy in those relationships that none with a neurotypical person has ever come close to. I’m not saying that neurotypical people are less capable of intimacy than autistic people, though I do feel that in some ways neurotypical people experience and express intimacy differently. But I know that there are autistic people who are primed for an intense, surpassing intimacy that feels oceanic in it’s bigness and wideness and the fierceness of its tides.

In any form of moving meditation practice, we hold the intention of staying with our experience, of continuing to move with and into it, of continuing to witness it, so that gradually, moment by moment, day by day, year by year, we expand our capacity to include. Our bowl becomes ever more capacious. At the same time, balancing this willingness to be present to whatever arises, is a discriminating awareness that holds the potential to move us away from situations of harm and towards places, people and practices that hold out the possibility of knitting us into wholeness. Where this discriminating faculty is not present or not honoured is the potential for abuse.

When I look into somebody’s eyes and experience the opposite of intimacy, I know this won’t change if I work on it; I know it says nothing about my capacity to connect intimately in many alternative ways; I know that I am simply experiencing my own neurology. Well, I’ve experienced it now, and my sense is that experiencing it repeatedly in this way isn’t going to serve me. In fact, it feels masochistic – or maybe sadistic, because I don’t feel as if I ever consented, not really. I don’t feel as if I was given the opportunity to make an informed choice.

My own experience as a participant is always educating me as a facilitator. How can I create something like this in my own work or not create something like that? So in a way this is myself talking to me here, but I’m also talking to you, out-there facilitator. If I know the structure right at the beginning, I have the opportunity to make a choice about whether or not it’s going to be helpful for me to be in it, because I don’t want to be unnecessarily bruised. I can give informed consent.

For me, offering choice in this way means that we are willing to let our students be adults. We are prepared to honour their personal experience and their inherent ability to feel into what they need, even if they have just walked in the door and never encountered the practice we are offering before. It means we are holding the intention of being as alert as we can to all the subtle ways in which we might be imposing our own preferences and aversions, our maps, our ways and our styles, even our own neurology, on our students. In a sense, we are all imprisoned in who we are, so this requires many leaps of the imagination. I have to be comfortable in my ignorance of you, willing to let go of cherished notions about how I offer my work and how you receive it. I have to be willing to go beyond the point where I think I’ve already done all of this.

I found it very difficult to emerge the ending of this article. I think I wanted some sort of resolution, which, for me right now, isn’t there. I wanted not to offend anyone – always a killer. What I’m actually left with is a sense of conflict. I’m an out autistic in a neurotypical world. Part of me wants to fit in, because that way you survive. You even get to access some of the privileges: work, community, a nice house. The awareness of how absolutely crucial it is to acquire neurotypical behaviours, to be able to pass seamlessly, was borne in on me the day I started school, and I spent many years learning how to look normal and say the right things at the right times. The alternative was to be an outcast. Now, with a diagnosis, an awareness of (dis)ability politics and a commitment to neurodiversity, I’m trying to unlearn some of this. It’s painful and laborious, like peeling off filo-pastry layers of skin. I have naturalised a lot of neurotypical behaviours. Although they aren’t innate, I’ve repeated them so many times, they almost could be. I’m like a person who left her homeland as a small child and learnt a whole new way of life, but deep inside still moves to the beat of the old country. Or as an autistic friend of mine put it, it’s like being an undercover detective. In the end, the two lives become so ravelled up, you hardly know which one belongs to you any more.

And I still don’t know how to finish this article.