I have a neurological condition: further notes on an autistic identity.

March 1, 2020 § 2 Comments

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A blog post about exploring new language through visual research. 

I’ve written a lot about my autism over the past 4 years, but that’s because discovering you’re autistic late in life can feel like a page-turner. With an introspective disposition and a bent for self-analysis the plot twists keep on coming. I’m glad of this. Who doesn’t love a good story and, let’s face it, there’s nothing more gripping than your own. I don’t minimise the inner struggle for autistic self-knowledge, but dull it isn’t!

Discovering autism can quickly become an identity quest. For a late-diagnosed person the self-image of a lifetime can suddenly feel like a case of mistaken identity – there really are no words to capture the magnitude of this. There follows a process of adaptation for which there is no guidance and little if any formal support.  We must work things out as best we can, and for many of us this can mean a lot of online activity, including reading and writing blogs. Wherein autistic adults are amassing a truly wondrous resource, which also serves to document both an important cultural moment and a movement for social justice. Good times.

Access to a collective autistic wisdom, absent for a lifetime, is a powerful force. Through it we can discover the language and concepts we need to ease our passage towards more congruent identities, but there are no emotional short cuts. Truly understanding and owning autism is something which evolves, I’ve found. Where I was last week is not where I find myself today. In a recent blog post I considered ‘social disability’ as a useful term.  Right now my eureka! is a post-it note on which a version of me seems to have written, I have a neurological condition. The me who wrote it must have been the schoolgirl me trying hard to please at handwriting practice. The note pictured above was written (left-handed) by the artist-advocate me who wants you to know that my neurological condition affects my handwriting. This blog flows directly from my visual research.

My post-it phrase also featured in the blog post about ‘social disability’, but sometimes we bury the lede. I must have written my post-it as an aide memoire. It was waiting for me yesterday on my return from a 12 hour working day (including travel), and today I’ve struggled. This is not ordinary tiredness, this is the ache of overload which I now understand to be neurological at core. So much so that I realise my post-it contains the message I must now front-load, not least to myself.

And with these words I am reminded of all the binaries we seem to peddle in our online lives, in which my lovely post-it could be seen as a pathologising message about autism. This is not my intention, and autism as a cultural identity is something I will also uphold to my final breath – I see no conflict in this duality. I continue to be joyful, and to celebrate my autism unreservedly, but I must develop the means to communicate more effectively about my autistic needs. What’s required is clarity of thought and vision. We can’t truly know what we need until we learn what’s holding us back. It’s all a work in progress.

I’ve worked with many artists and I know how challenging it can be to seek to make autism visible when the narratives surrounding autism remain skewed and contested, but I believe it to be important and fertile ground. For example, I intend to talk and practice more self-care as a result of working on the image above. The act of creating it conjured the idea that one simple thing could have improved my yesterday and can help me in the future. My yellow post-it! I’m now excited to discover what happens when I carry it with me – both literally and metaphorically speaking.

I’m loving this phase of my becoming. My post-it isn’t designed for sympathy, no, no! For me this is a powerful image, brimming with ownership. I’m all for that!

 

 

Art, fog, and beautiful brains: thinking about autism and culture shift in the arts.

February 15, 2020 § 2 Comments

Two very red tomatoes painted on a rose/white background

You can’t tell me how to paint tomatoes #WIP

 

I’m a late-diagnosed autistic. The more I learn about myself the more I recognise  unwitting social ableism. As a cohort of emancipated autistics at loose in the world we can can be vehicles for change. We need both inner metal and moments of respite because it’s not easy (and it’s not for everyone). We can only work to capacity, and move forward without judgement, because this is painful work.

In my travels I often encounter casually displayed social prejudice embedded in seemingly benign comments, which are rarely maliciously intended. In most cases it would feel wrong to interrupt and say…excuse me, what did you just say?! These are not yet the social rules.

So it would be awkward and seem rude, and yet – there it is! A social ableism which not only hurts and offends your ears but  holds back the kind of  culture shift we desperately need – not only for equality, but to save lives.

Autistic people die by suicide  because they can’t perform as non-autistics. Autistic people also die in social care.

There is urgent cultural work to be done. Yet, faced with such a moment I often fall into a familiar mental fog.

Where to begin?

This is the question autistic people report facing with many even ordinary every day tasks. I’m finding it useful to think about this as a form of ‘brain fog’ which affects my ability to join up facts, marshal arguments or take action in a conventional expected/demanded linear fashion. Invisible barriers descend and conspire against us – and sometimes we haven’t even left the house.

People often use the term ‘procrastination’ to describe such delay in coordinating action or response, but I find this inaccurate and pejorative. It’s not as though we have a will in the matter.

So I want to talk about brain fog as a neurological condition and use fog as a metaphor to think about my disability and my art practice. Logically, I feel, the way my brain works will show itself in my creative method – an obvious point but one rarely analysed in mainstream arts.

It couldn’t be clearer. Procrastination suggests there’s an alternative involving non-procrastination. Namely that I could speed up if I just moved directly into tackling the ‘task at hand’.

But no.

I challenge anyone to move swiftly and directly in a dense fog. No. The sensible thing is to adjust your ETA, slow your speed and find a fog lamp.  You literally have to inch your way.

Brain fog (I find) can be made up of two categories:

  1. Too much stuff – options, information, thoughts, hostile demands (which go against brain type)
  2. To little stuff –  lack of relevant information, coded information,  not enough working memory, dissociation, loss of focus.

It’s a hugely complex picture as our fog-prone brains are also our best friends. Brain fog seems to be a feature of an expansive and holistic thinking style, and I want to add that it’s not a permanent state which finds a wonderful counterbalance in hyper-focus. We can be incredibly focused when conditions allow.

Also a fog prone environment is a treasure trove of intuition, capable to a fault. This line of thought helps me to understand the kind of learner I am – I have to experience something to learn about it and feel my way.

It also helps explain the methodology of my painting practice, which flows not only from brain-type but also from the origins of my painting practice in an experiential painting group during my art therapy training.

My most recent (obsessive) tomato paintings couldn’t illustrate this fact more perfectly. My method has been to coax my painted tomatoes (signifiant symbols of a very specific childhood memory and location) onto a series of canvases through a process of trial and error. As though themselves emerging from a fog, they’ve come in and out of focus, been marked in and erased countless times along the way. A vital part of this process has been checking my work against the harsh studio lights. If the tomatoes weren’t ‘ripe’/right I pushed them firmly back into the fog. Painting in oils has felt almost like sculpting in clay.  Importantly I’ve revelled in sharing my process on Instagram – knowing now that what I’ve really wanted to say is look at my brain! This is how it works…

What’s vital to my process is the to-ing and fro-ing – the freedom I give myself to experiment without judgement and begin again if I’m not happy with the results. It’s so not a linear process. What counts is the visible and concrete nature of this exploration – this is my kind of research.

What I hope to do in my practice is begin to show more of my process so that I can carry on exploring these connections more publicly. Working with a fog-prone brain is truly wonderful (I wish you could try it if you don’t have one!) until I’m forced to complete a linear task in a linear fashion, or I’m not able to access missing data. Feeling my way as a method is vital to my ability to function, stay well, and at times excel. What many of us need is support to make our way in a world not yet fit for purpose, and which forces us to work against ourselves.

And so we return to the start of this blog post and the desire for culture shift, and the needs for resilience in the face of social ableism.

I’ve written previously about reviewing where I am  4 years on from an autism diagnosis – I will be 4 on the 4th of March 2020 autistically speaking. I want to use my practice to talk about accommodating brains that are ‘other’. Our multifaceted, beautiful neurodivergent brains, with which we can be the useful ‘aliens in the room’ (a recent phrase I’ve heard used to talk about innovation).

It’s important to feel useful to stay alive. It’s what I want for us all. We must all feel that we have agency over the things which matter to us. In my studio I know that my tomatoes will dance, sing, and play with me, until they’re ripe and ready to emerge as talismans for a way of being that can’t be silenced – it is too joyful and beautiful.

Okay, I know I can’t effect culture shift with my tomatoes! Though I can add to the growing conversation in the arts sector.  I’ve recently been inspired by a colleague about to think about the power of silence as a defence against social ableism.

I’ll be holding the possibility of using silence in any future encounters with unintended social ableism. Let’s see what opens up in the gap.

You can see more tomato action on @s_boue

 

 

 

 

Neurodivergence and tokenism in the arts!

November 18, 2019 § Leave a comment

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Stills from video capture: Sonia Boué, 2017

I’m autistic. It’s my job to be anxious. Being anxious is one of the things I do best, so I’ve done some good worrying about some of the more recent approaches I’ve experienced from arts organisations who I am not in partnership with.

I’ve started to fear the spectre of tokenism towards neurodivergence in the arts and worry that the direction of Arts Council England’s (ACE) 2020-2030 strategy could even unwittingly fuel such a development. I’m also worried about artists funding in general and for neurodivergent artists in particular, a concern which runs though my piece.

I believe that good practice for working with and supporting neurodivergence in the arts is emergent and there is much to be hopeful about in the coming decade. But I remember reading ACE’s Shaping the next ten years draft strategy document at the consultation stage and wondering what its shifting imperatives might lead to, including the possible contortions on the part of those seeking funding to fit criteria set by ACE. I’ll need to go around the houses to give the context for my specific misgivings regarding neurodivergence, but bear with me and we will get there in the end.

Since completing my own ACE funded pioneer support project for neurodivergent artists earlier this year, I’ve had cause to wonder how the new imperatives might translate at the funding interface for others? What effect might they have on potential applicants? And what of those whose practices and services won’t ever be recognised as “relevant” by ACE but are nonetheless meaningful and valuable?

Cultural historian and commentator on the arts, Robert Hewison, wrote an article A strategy for self-preservation, in Arts Professional, critiquing the Shaping the next ten years strategy thus,

“…it seems Arts Council England (ACE) intends to achieve a transformation from a country where ACE exists to help the arts to one where the arts exist to help the Arts Council.”

I admit that aspects of the document were perplexing to me. Should we now call ourselves creatives rather than artists? By which logic, what of Arts Council England as moniker! Time for some expensive rebranding, perhaps? Must creatives now also primarily seek to become agents of social change to achieve funding? What about the artists whose mission it is simply to make great art – which incidentally the sector/industry relies on?  Can we as artists be expected to do all that is required by ACE without becoming something else in the process? I can speak from experience on the latter.

A paper by Susan Jones, The chance to dream: why fund individual artists? lays out the current disparities in the ACE funding system and the paucity of direct funding to artists, without which (I repeat myself ) the sector would dry up.

“The decline in volume and value of direct funding to artists from ACE is unambiguous. Notably in 2009/10 fewer than 2.5% of artists were directly funded by GftA, but by 2013/14 this reduced to less than 1% with DYCP showing a further decline.”

For those who don’t know, Grants for the Arts (GftA) now replaced by National Lottery Project Grant (NLPG) is a general sector pot. Artists must demonstrate audience engagement figures and provide match funding in order to get NLPGs, as well as making the ‘creative case’ for diversity. In my experience the effect on an arts practice is to develop invaluable project management skills (among the myriad benefits) but to lose out significantly on time to make work. Developing Your Creative Practice (DYCP) is a ‘no strings’ award designed to address core NLPG barriers for individual artists. However, DYCP is a tiny pot with only a 10% success rate for applicants, I’m told. The subtext in all ACE’s material on DYCP is that it’s almost impossible to gain this type of funding. I worry. What kind of message does this give to artists!

The stipulations within the previous GtfA, and current NLPG, have already shaped applications and had an impact on what’s produced within the arts in recent years.

In future to achieve funding applicants will need to demonstrate “ambition and quality”, “inclusivity and relevance”,  “dynamism and environmental sustainability” – if you can decode what this actually means in practice.  As an artist applicant it can often feel as though you’d better offer to tap dance on the roof too – the list of promises made in an application can be legion. You begin to see my point about contortion, which is an especially serious one if we’re to consider the artist and the sustainability of creative practice.

Is, as Robert Hewison seems to suggest, the tail wagging the dog?

So I’m frankly worried about a possible rash of quick-fix funding bids and tokenism at an arts organisation level too, because I’m not sure all are cut out to be ACE’s agents for socially engaged creativity (however laudable and desirable this would be in practice). Also, because I now provide pockets of sector support in this area I know how intensive and specialised the work of building authentic, robust, and meaningful programmes/services for neurodivergent communities can be. I’m immensely lucky in my partnerships, but am also sometimes approached in a tokenistic manner, which is how I know.

Specifically, in the case of neurodivergence then, I must ask where the knowledge base is for working with us? Further, how can the sector provide services that represent a good investment of public funds without such a resource, which I would add should be self-led. Until that knowledge is acquired and those relationships have been built how can arts organisations do the deep learning that’s needed? Enter Jon Adam’s long and at times painful mission to fund the Flow Observatorium hub in Portsmouth as an example of self-led/user-led organising to fill the gaps in sector knowledge and provision.

Interestingly for us ‘next frontier’ marginals – the neurodivergent – Shaping the next ten years coincides with our gradual seepage into  mainstream conversations about diversity in the arts. Hence the arts are now peppered with references to neurodiversity, which in itself should be a welcome development but with which I sometimes find myself at odds.

My heart sinks knowing that uninformed bids, featuring neurodivergence, are quite possibly sitting in the Grantium portal as I write.  You can understand it. We’re now more visible.  I often see neurodivegence tagged in the growing lists of marginalised identities, which is lovely but at this stage of our evolution into public consciousness is often shorthand, or a friendly nod.

What a well-intentioned temptation it could be to throw in support for neurodivergent artists (for example) to strengthen a bid’s “relevance” without understanding the first thing about the need for tailored programmes/opportunties and relational work. I want to write it large, you can’t just offer the same stuff in the same way – the thinking and design around what we need has to come first and can’t effectively be bolted on afterwards.

I worry too that the imperatives for ACE “relevance” may (albeit unwittingly so) create even more barriers for the neurodivergent applicant. I could write reams about this but don’t have the unpaid time to offer up to such a task.

I’m often approached for support with ACE applications and questions about the DYCP in particular – the ‘no strings’ opportunity to focus on being an artists is probably every artist’s dream. My advice until now has been to opt for NLPG, which has a surprising 42% success rate, I’m told. But I’m beginning to wonder if we should all apply for DYCPs to demonstrate our need, rather than be put off by the mixed messages embedded in this opportunity.

I feel incredibly blessed to have gained both GftA and NLPG in my time – a combination of doggedness and good fortune. I know how vitally important these awards are to an artist’s professional life, and I’m confident in saying ACE have invested well in me. I can now give back 100%+. And now that I’m almost at the end of my piece you’ll see that it’s all connected – artists are our industry including the neurodivergent. We need to fund so many more experiences like mine to build the knowledge bases I’m talking about. We also need to be allowed to remain creative practitioners as well as developing such vital sector support skills.

So in the last round of DYCP I submitted an application too, feeling not a little unlike Don Quixote tilting at windmills. It’s a bit like buying a lottery ticket now that I think of it, but as Susan Jones says we artists need the chance to dream – preferably funded.

On all the above, watch this space!

 

 

 

Neurodivergence – language, the concept of ‘group brain’, and neurological-ecologies.

November 5, 2019 § 1 Comment

Sonia Boué bw 2

Photo credit Joel Chester Fildes


Do you know how to use the terms neurodiverse and neurodivergent? 

What’s in a word? What are four letters between friends, you might well ask.

I myself am no fan of getting hot under the collar about language OR spelling. I’m dyslexic and I loathe being corrected. Way to feel like you’re back in primary school waiting to read to Miss, knowing that you’re destined to fail because your brain (unlike those of your mates) won’t let you.

So I proceed cautiously, but with a passion.

In my heart I know that words matter, though I honestly feel we can go too far. Again, I’ll take care, yet my impulse is to be strident because this is important.

My recent appointment to the A-N Board is an exciting development. An opportunity to help direct the biggest arts organisation for artists in the UK (and possibly even in Europe). I will do so neurodivergently.

I won’t help direct the Board neurodiversely because I am an individual and not a group. We are as a group (species; Homo sapiens) neurodiverse. Ergo, neurodiversity refers to a neuro-ecology. Pretty much think biodiversity, but with brains, and you’re there.

The neurodiversity paradigm is a term coined by Nick Walker, and I would recommend everyone who wants to understand it and the terminology to read his key text Neurodiversity: Some Basic Terms & Definitions. It is short and extremely clear.

Here’s one pithy example:

“Neurodiversity is not a trait that any individual possesses. Diversity is a trait possessed by a group, not an individual. When an individual diverges from the dominant societal standards of “normal” neurocognitive functioning, they don’t “have neurodiversity,” they’re neurodivergent.”

The neurodiversity paradigm is hitting the arts big time. Almost daily I’m astonished to read about opportunities for neurodiverse artists. The other day this was topped by reference to a self-diagnosed neurodiverse artist.

In the first case, technically speaking this reads as an open call like any other. In the second case, it reads like a double negative. Artist discovers they are part of a greater neurological-ecology like the rest of humanity.

I astonish myself by how much these understandable mistakes press my buttons, until I scroll back down the decades of dedicated research (and hard won experience) my current level of knowledge is founded on. This is not like my autistic ‘quirk’ about the status of the Tupperware cupboard (yes, I do have an unusual need for order in this department). It’s because the concepts my community have toiled over and honed for eons are sometimes being chucked about like newly plucked feathers.

I understand. When I was first corrected on this point, by Nick Walker himself, it took time to absorb the difference and get used to using the terms correctly rather than interchangeably, but I have done the work to get there because it matters to the paradigm shift we need to make. As Nick says, this is a social justice issue.

I’ve since developed my own understanding of the importance of working intentionally with neurological-ecology in mind. This I’ve termed ‘group-brain’.

To give an example, for my recent Arts Council England funded #NUNOproject I was enabled to lead, and my ‘shortcomings’ were compensated for by the project’s combined neurologies – ‘group brain’. Whenever I needed it, there was a rich pool of talent to draw on, a sea of helping hands, and extraordinary good will to support me in doing my best job. This was possible because we were working openly with an understanding of our neurological profiles across the project, and across neurologies too. No hierarchy, no judgements, and full consideration to optimal working conditions for ALL, regardless of neuro-type.

Unless as Nick Walker puts it, those closer to the “dominant societal standards of “normal” neurocognitive functioning” understand they too form part of our neurodiversity as a species, we neurodivergents will be forever othered and we all miss out.

So I urge you neurodiver-gently to consider the difference. Absorb the language and the process it represents of de-centring neuro-normative brains. I say to you gently, move over, it takes all kinds of brains to make a better world.

In my view, arts organisation need to embrace the depth of learning required to become agents of genuine change. Being smart about language is a good start.

 

 

 

Slick as a seal, I rise – making autistic empowerment visible

October 26, 2019 § 4 Comments

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Well, I try. The last time I used this line (in a poem) I was met by guffaws. My children find me hilarious, a fact I often find bemusing but welcome. I don”t think my head will ever get too big while they’re around to remind me that I sometimes risk being pretentious if not risible.

In my art practice I’m building up to new works, and am encountering new ideas in my other work too. I have many jobs (or many projects more accurately put) to which I can now bring a lifetimes experience of the kind that matches, when so often in the past my experience has been out of kilter. I’ve also been given a creative opportunity which has over the past year blown my practice wide open. These two related events are working a strange kind of magic on me.

We are a sum of all our parts, it’s said, but for autistic people it can be hard to experience the parts as connected. I certainly didn’t until quite recently. This feeling of fragmentation is something I’ve written about before. I think about evolving as an autistic person since my diagnosis in 2016 as a series of incremental steps towards a feeling of congruence. I believe the mechanism involved is the unlearning of unhelpful coping strategies and exploring new more suitable ways of navigating the social world.

With my relatively newfound anthropological lens on life even my mistakes become opportunities for learning. I’m no longer mortified, feeling (quite rightly) that I can’t help being ‘blunt’ at times. I’ve decided I really would like a t-shirt which says, congenitally tactless! I feel it might go down well at parties I will never go to and be quite fun to wear. I’m not the first to notice that people like it if you get in first with the joke and don’t mind having a good humoured chuckle at yourself. But I’m getting ahead of myself.

For some autistics this would feel very alien advice and so I don’t share it as advice (because for many of us being the butt of the joke all our lives has been bad enough without any own goals in this department). I share it as an observation (from a self-confessed privileged vantage point), and because I’ve found that opening up about my areas of struggle enables others to come forward too. This is revealing and, I think, important  – I remain convinced that there are more ND people in the world than the world currently knows about. Also that in accommodating our needs we accommodate others. So privilege and path-beating go together.

As I continue my journey towards autistic congruence, I can’t help thinking that the high incidence of hostility to social difference in our culture can block our ability to experiment and learn early on in life. Accurate perceptions about autism in the non-autistic population are also equally stymied it seems to me. As I’ve said so often before, if the welcome isn’t right we can (unsurprisingly) become contact averse. Like so much misperception about autism this process (in my experience) is an ongoing social dynamic whereas people tend to think of autism as a fixed state of being. This is not to say that I think we need more encouragement to adapt to the neuro-normative society we find ourselves in (this is not what I mean) – simply that with the right knowledge and conditions we can all learn from one another across neurological types.

The discouragement that an autistic person might receive over a lifetime can perhaps be seen as an incremental force in the opposite direction to the one I’ve found myself travelling in since 2016. This is a truly terrible thought. Okay, I’ve always ‘worked on myself’, but it’s become clear I was working with the wrong information. As I said quite recently to a friend – it was like I was paddling along in a canoe and suddenly I was given a turbocharge engine.

I can’t talk about my new work yet, but it makes my pulse race and spurs me on even as we face the tipping point of winter (my life long nemesis!) What I do want to do is offer encouragement to others, wherever you may be in your journey to congruence.

This is why I make myself visible, because in the words of Soweto Kinch on BBC Saturday Live this morning (about 20.40 mins into the programme), you can’t be what you can’t see. This too I want on a t-shirt.

 

 

 

Congruence in the making – how to live autistically in a socially hostile world?

July 13, 2019 § 2 Comments

Version 2

A blog post on autistic masking, the benefits of self-knowledge, and achieving congruence. 

There are many things this blog post ‘should’ be, which it isn’t, and I’m aware of the unappealing nature of beginning with ‘failure’, but this is where I must start.

As autistics, god knows, we’re used to that! Those of us late discovered autistics (credit to Annette Foster for this wonderful alternative to the term diagnosis)  have decades of social ‘failure’ tucked (not so neatly) under our belts. Though as I write this I begin to feel that the word exclusion works just as well as failure, if not better.

Curiously, one way to be ‘included’ for autistics is to mask our autism and play an elaborate game of pretend.

Those of us who could have learned to mask, which is a survival mechanism, using observation and imitation to camouflage our difference. The effect of this in the short term is social survival (going under the radar of bullies, and avoiding humiliation and derision), but in the longer term we can experience serious identity confusion though masking. The pressure to mask can lead to a fragmentation of that all-important sense of self, which I believe all humans need to live happy and fulfilled lives. Many of us probably retain a powerful core identity (which at different times and in different contexts must be pushed underground to survive) and that’s possibly why we often have a rich imaginary lives, enabling us to ‘compensate’ for all the masking to some extent.

For non-autistics, the thing to remember is that often masking is not a conscious choice, it can therefore be hard to uncover it in ourselves. Before my discovery, I experienced it as a force beyond my ken or control, with a good dose of shame attached to it. Why couldn’t I get a grip and just be me?

Yet although it’s so often involuntary or indeed forced on us, it can be so deeply embedded in our personalities that approaching the question of the ‘authentic self’ (a flawed concept in itself) can’t be separated from an element of masking. All humans mask to an extent (the social carapace as my longtime therapist used to call it), but autistic masking is of a different order. I believe this is due to the extreme effort it can take to sustain it, as well as the consequences on our personal development and safety.  Some of us get trapped in relationships and situations which are abusive or toxic because we’re masking our true needs and identities, and don’t know how to stop. Potentially, there’s a huge amount of fear, anxiety and danger involved.

My own impression, before my discovery of autism, was of being surrounded by people who had a curious sense of purpose and admirably stable identities, while I blew with the wind – literally taking on the characteristics of those around me. In order to shed them off I craved significant time alone – I now see – to ‘get back to myself’. ‘Myself’ needed recovery time to allow these other personalities to ebb away. Somehow they seemed more alive than I, and a cacophony of voices, astonishingly accomplished phrases, and carefully coordinated gestures coursed through my veins like a wrong blood type transfusion. I was often enchanted by their glamour and tortured by endless false comparison. These days the wrong blood transfusion experience is a curious memory. I’ve strangled this malady at source. They do say knowledge is power, and I can mainly chose my activities (an acknowledged privilege) and adapt to my needs, so that recovery time doesn’t dominate my days.

Imitation is still the font of all my learning. If I spend time with you I will quickly pick up traces of your accent, mannerisms and inflections – it means I like you, but I experience this in a less invasive way these days. I know who I am, and I don’t have to inhabit your every way to know you, but I will joyfully observe (notice in detail!) and enjoy the you-ness of you. I’ve got to know the many forms of my masking, and I understand that you mask too (I sense it, and always did if I’m honest) – but there are moments when our beings touch with the lightest of butterfly kisses, and it’s real.

I want to say that I’ve learnt to mask more smoothly since my discovery – as though I’m now a more experienced driver, who doesn’t crunch the gears so often, though (of course) I can still find myself on a rough road at times.

These thoughts coalesced in my mind as I listened, in particular, to Will Mandy and Catriona Stewart present at #InsideOutAutism, in quick succession. The impact of masking on our mental health, and the benefits of finding ourselves in community and through making, impressed themselves on me in new ways. The importance of congruence in my own life journey came to mind.

It wasn’t until I was home again and took off my handmade brooch (pictured above) that I made the connection between the powerful congruence I felt at #InsideOutAutism and wearing it on both days. I’m still processing why this act of making and wearing felt significant. I’ve never been one to wear text on my body in any form, perhaps because my identity has been at times uncertain and under siege.

But my self-fashioned brooch was different.  Here was an artefact, crafted over time and without conscious purpose, redolent of my journey as an autistic woman in reclaiming the language used about me, and my people. So antiquated is the text that I am unfamiliar with some of the words, and it acts as a curio, or something I could have inherited. I feel I have. It holds a familial feeling, and when I peer at its loveliness I hear the ancestral whisper – we were once like you. If an object can be joyful and witty, it has those qualities. Have you ever bounced on a trampoline? My brooch is the rebound which tosses your heart in the air. It gives me abnormous joy. It trumpets confidence. That zing-a-ling feeling that I’m A-okay.

So I was delighted to learn through Catriona, that an artist called Lou McGill has been making the most gorgeous Freedom is fragile pendants and brooches

I’m moved to think there is something significant afoot in the making and wearing of these powerful almost talismanic objects, which I’d like to explore. Watch this space!

With special thanks to Susie Bass, Annette Foster, Dr. Kate Fox, Dr. Catriona Stewart, and Dr. Will Mandy for inspiring conversations, poetry, and presentations at the recent #InsideOutAutism conference organised by Prof. Nicola Shaughnessy and the Playing A/Part research team. 

Masking and caring – an #actuallyautistic perspective.

June 16, 2019 § 1 Comment

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I’m currently adapting to a new situation, which for some autistic people can be tough to handle. The need for time in which to integrate patterns and routines is not something I’d identified before my diagnosis of autism in 2016.

Now that I know about it I can follow the ups and downs of what I will l call my wrong-footings like the contours of a map. I’m almost in sync with my own discomfort (gasps from the gallery!) which is not supposed to be that common. Isn’t autism a ‘being out of sync’ thing? In some ways yes…

Yet, I’m not where I was pre-diagnosis, which is why I’m keen on identifying as autistic.  It helps me manage life in ways which are beneficial. Building a set of strategies  is key, I feel.

I’m suddenly part-time caring for my mum who is 93, and after a long lifetime of coping, is suddenly frail and in need of 24/7 care. It began with a punishing two week stay in hospital. My sister and I took shifts and made sure she was never unattended even at nighttime.

Autism made this a challenging job in some ways, but it also enabled me to maintain my focus on mum. I understood that I could tackle the rigours of a large and busy ward with its bright lights, constant noise, high social demands and substantial emotional labour, if I established routines and rituals. Two huge pluses were that the ward ran to a discernible daily routine, and that there were plenty of rules (these were variable according to staff but they were readable and a transgression could be decoded and added to my database).

My shifts were often 24 hours +. During each shift I travelled the same routes in and out of hospital carefully noting the landmarks until they formed part of  my inner landscape. I ate the same food every day, which I bought from the limited outlets on the hospital site. Creating familiarity and limiting choices spared my cognitive load and lowered anxiety levels.

An early moment of crisis came with a sudden change of location for mum. Without warning, on the third day of her admission a porter arrived and she was moved from the clinical decision unit (CDU) to a main ward in another building entirely. In addition to the new map I would need to input, we had shifted from a diagnostic ward of four women (CDU), to an individual side room on CDU, and now on to a ward with fourteen beds.

This all meant progress in medical terms but it had an impact on my ability to cope. I began badly on this ward due to wrong-footing. Give me no preparation time, change my environment, make that environment densely peopled (with no privacy) and I will be ‘flustered’.  Communication breakdown followed.

I’m glad it did. A delirious person in their 90s can’t advocate for themselves, and many physiological changes take place which can affect the ability to carry out basic bodily functions in an orderly fashion. Arriving on an elderly ward where staff don’t know your previous baseline functioning, and where these symptoms can be confused with dementia, can lead to conflict about how best to care for them.

Mum had been admitted with a urinary tract infection (UTI) and was finally on IV antibiotics. On our first night on this ward there was a moment at 4am, (having spent the night asking for bedpans a regular intervals, and trying to keep mum from falling out of bed) when I found myself on the sharp end of an auxiliary nurse’s tongue. I got a bollocking for want of a better word. Unbelievably (to me), I was told I was upsetting my mum and making her anxious, and that this was prompting her frequent urination.

It turned out that auxiliary night staff didn’t know she had a UTI (and significantly I didn’t know that they didn’t know!) I tried to explain that I didn’t know the rules of the ward yet, which seemed to be very different to the CDU, where it was okay to use the call button to ask for bedpans. As it happened, shifts differed. I quickly learned to update staff on mum’s current status, and to ask how we would handle toileting needs in the night with each incoming team. Communication and planning made all the difference.

This moment was signifiant. It could have been the moment of my unmasking. I seriously considered it, as I have sometimes done before in extremis. But I stood my ground – though I know that I looked horrified (I can tell when my face freezes and I openly stare at someone in disbelief). I have a very expressive face – which can get me into trouble! In the end I asked the nurse to leave me alone.  This felt appropriately assertive.

We subsequently patched things up and became best mates. I liked and admired her immensely, she was incredibly kind but had misread me. In turn I discovered her acute stress about the very real possibility of having to work a night shift alone the following evening (eventually a second nurse was found). The turning point came when I uttered a foul expletive that this could even be a thing. We were on the same side – pro NHS and anti cuts to frontline services.

There followed a conversation with the ward sister, who asked me if I was unhappy with the care on the ward. Together we unpicked events, and I stressed how appreciative I was of her staff, but that there had been a problem of communication.  I could have mentioned that I am autistic and need clear consistent communication. Again, I held back. Would this be useful when the misunderstanding was on both sides, and that staff had lacked crucial information? This was nothing to do with my autism.

I figured clarity would be important for any family member supporting their loved one in hospital, and nothing about the environment could be changed for me. Nurses were stretched beyond capacity, and my needs in this instance could be managed by me (my hyper focus and my myriad routines and rituals).

Significantly, I felt that staff would view me differently if I disclosed – and I needed to become part of the team somehow (and I did). If we were to get mum out in one piece, I had to mask-up. Due to systemic ableism I didn’t trust my unmasking wouldn’t create bias or prejudice against me and count against my ability to report accurately on my mother’s progress. As it happened, twice my pattern recognition skills proved vital to mum’s treatment. I don’t believe that I am wrong in thinking I would be taken less seriously, and where life and death were concerned I wasn’t prepared to do the research to find out.

I find that masking continues to be required beyond hospital, and in my care of my mum at home I’m navigating the boundaries of my masking even further.

I’m part of a growing team of carers as we get to experience a post hospital service which is on offer for six weeks in my mum’s local area. This has been fast-moving, as there is a window of time to claim it. All of this is so welcome but requires adjustment. The landscape changes, and it changes again.

The greatest change is in my time and my location. A split week is proving hard to adapt to, and this experience has felt what I imagine a small but significant house fire to be. I’ve lost a month and am slowly piecing together new routines and rituals. Forgive me if I owe you an email or a piece of work! I’m getting there.

In this piece I may have equated masking with ‘coping’, but I don’t quite mean it this way. I also seem to imply that if my autistic needs are met I can mask more easily, and that that’s a desirable state of affairs. I feel this may be true but am not advocating it for others. I’m just exploring what happened to me and I’m keen to ask questions of myself.

What I know I do have is a complex relationship with masking, which I want to be honest (and hopefully nuanced) about. Stigma exists, often we don’t have a choice (those of us who’ve learned masking as an adaptation).  For myself as a bilingual person, I have come to think of masking as a bilingualism, wrought by the necessity of living between worlds with different cultural norms.

I hope to write more about masking and caring as my situation evolves. I find it shocking to think that in a public healthcare setting I didn’t feel safe to unmask my autism. I didn’t feel confident that staff would have received sufficient training to accept my competence once unmasked.

 

 

 

 

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