June 5, 2017 § 10 Comments
Selfie, taken at Oxford train station while texting Rhi, drinking flat white coffee and squinting at the camera in bright warm sunlight. By the time the train arrived ten minutes later a sudden cold wind had brought on numb fingers.
Occasionally I read autistic blogs and the writing feels remote. Slowly I’m identifying a difficulty in matching words to experience. Meltdowns have been one such area of disconnect, but today, as I prepared to make an overnight journey, words and experience coalesced to bring a new understanding.
A brief essay on words (skip if you just want to read about the meltdown)
I mean words – what are they and where do they come from? I’ve previously described how writing feels like plucking words from the sky. I sense them rather than understand them in a precise manner. Sometimes I get the ‘right word’ but often I don’t, and I have to keep fishing in the clouds. Words are tricksy like that.
Blog posts often appear as shapes, but today I began with a strong impression of words flapping pleasingly this way and that, like washing on a line just above my head. And I wished I could press my face into a crisp bundle of newly washed and dried words, then lay them out in a straight line for the reader. Ta-daa! SO much brain work would be saved by such means.
But words are both like objects to me and frustratingly abstract. It’s a paradox which can frankly hold recognition in abeyance. How do you match experience to words when they are nothing like experience? Since diagnosis a year and two months ago, I’ve had to take it on trust that meltdowns are part of my experience too.
So what do I experience?
In childhood ‘tantrums’ – were memorable. I gained infamy for my meltdowns, and earned the nick name ‘the earthquake’. But throwing myself around didn’t stand out so much when I was small – fast forward to my late teens and no-one outside my family would have recognised the former earthquake me as me.
Fast forward again to 2017. You’re so calm! people tend to say to me.
As I gradually learn more about myself I see that I do, of course, experience meltdown as a sudden crashing in of functional capacity.
It’s just that I learned to do it quietly – off camera. I never knew just why it should be so hard to get ready to get dressed sometimes, or simply pack for a short stay away from home? The reasons have eluded me until today. Texting my autistic friends revealed to me something I had never known before. My sensory issues are REAL and relatively common for autistics. Alterations in sensory perception can make the texture of almost any fabric an irritant. I can go through an entire wardrobe and find almost nothing my skin can tolerate once in a state of sensory deregulation.
And now that I have made this connection I see that while having a shower can be one of my favourite things, the after effects can be devastating in terms of sensory regulation, depending on air pressure and the temperature in the room. Changes in tolerance can be rapid allowing little time to catch up and react. Often such changes will be entirely unpredictable but at least a pattern is emerging.
I challenge anyone to try getting dressed when showering sets the entire surface of your skin crawling, and the soles of your feet morph from neutral to achy with a side order of grit between your toes. There are no socks on this planet that are right under such conditions. Even the trainers you’ve been wearing for months so that they follow the exact contours of your feet feel lumpy, off balance and just plain WRONG. Go on. Get dressed then. No?
Add little extra pressure – like having to get dressed and catch a train when a minor heatwave just dissolved into a classic British all the weathers in one day – with alternating sunshine and showers. That’ll be the reason you’re a raw nerve by the way, but you’ll find it hard to explain even to yourself how stressful adjusting to contrasting weather conditions can be. No matter! The train won’t wait…
And you can’t casually fling overnight stuff into a bag and go. Hell no! You’ll need a suitcase of options (wot but you’re only going for one night! a helpful relative might say to spur you on.) You’ll feel close to defeat. Oh, and you’re still not dressed. But come on, think about today’s and tomorrow’s clothes while the ache in your bones and the ants on your skin gnaw at your dwindling ability to focus. Your brain registers that you can’t possibly know what to wear tomorrow as this could surely happen all over again.
Okay – can you pull it all together? Want to scream yet?
I’ve been here so many times before – not being able to dress myself (what!?) when sensory circumstances conspire – is a thing I’ve lived with for a lifetime. But at last I begin to discern a pattern – this happens in certain weathers and/or when I have to plan for being away from base camp.
I now see that such crisis’ are the direct result of unreasonable pressures. It’s genuinely impossible to get dressed and pack clothing to accommodate an autistic sensory system while experiencing acute sensory deregulation!
A body which can’t automatically access self-regulation relies on its owner to drive on manual. This forms part of the extra work many autistics must carry out all day every day – many of us without realising it. Daily we micro-manage our bodies with our careful routines and intricate strategies. Time away from base camp requires planning and portable equipment. Acute sensory deregulation and the promise of variable conditions create a perfect storm and blocks functional capacity.
Who knew that this was so? Certainly no-one ever told me. I’ve had to work it out with a little help from my friends.
The relief is incredible! Having autistic friends means I can swap notes and indulge in the kind of sisterly conversation that can stop a potential meltdown in its tracks.
Tomorrow we all meet up in ‘real time’. Yes indeed – we were all getting ready for a train ride to Birmingham to provide feedback on an art space from an autistic perspective.
It’s taken me so long to write this post that at the time of publishing the meeting is done and dusted and we’ve gone our separate ways. But we’re all bound for the same destination. Decompression central here we come!
May 30, 2017 § 11 Comments
I began thinking about this post through a personal reflection on the contribution of deep connective thought to innovation within my own projects. My focus (naturally) is this style of thinking within the autistic mind and how it might connect to mainstream culture, yet remain unrecognised as autistic in origin.
The obvious follow on from these musings is that there exists a parallel history to mainstream narratives, one of hidden talent and industry which has powered (and continues to power) just about every area of human endeavour. If our net is cast wider to include the entire gamut of neurodivergent minds, we can arrive at the following statements.
Traces of neurodivergent brain activity form a powerful (yet unspoken) web around the globe and across the ages. This web in past and present times supports all areas of human thought. If we turn this round 180 degrees, it can be argued that there will likely be no area of human thought in which neurodivergent brains are not in some way major contributors.
Steve Silberman traces aspects of this history in Neurotribes – what I present here is a flow of thought from personal experience.
Continuing this train of thought I’m struck by the equal knowledge that enforced conformity permeates modern human societies through a bewilderingly comprehensive array of systems beginning with school, in which neurodivergent minds have been assaulted or abandoned (I speak from experience).
In the area of autistic life – the one I know and will therefore stick to – the hidden nature of our toil has been due to ignorance and stigma. I’m certain this applies to most neurodivergences, but will park this larger topic here (with keys in the ignition) for all those other self-advocates to take for a spin.
Autism as a narrowly defined bundle of ‘impairments’ (seen through neuro-normative lenses) allows no possibility of contribution, let alone a fundamental role for such minds in supporting a mainstream culture. As we say in the UK – that is a bit pants.
But hope is on the horizon. The notion that autistics can be all things, because there are visibly so many ways of being autistic, has (at long last) the potential to flourish with the dawn of the neurodiversity paradigm. More of us are ‘coming out’.
I thank each and every one of these incredible pioneers, because they (you) have allowed an opening up of what it means to be autistic, and therefore how to begin the job of navigating and negotiating space for ourselves.
More elbow room – and the all important validation of public funding – is fostering a growing sense of entitlement (yes – a difficult word) within my soul. I feel entitled to a space in this neurotypically dominated world – and it is impossible to understate what a powerful shift this represents. For more than half a century, my journey through life has never felt truly worthy – a life lived as a failed neurotypical is a hard act to sustain with dignity or joy. Now I sense my basic human worth on this planet less fleetingly and more securely – as the incredibly diverse and rich community to which I belong grows around me, and I focus on the allistic friends who can genuinely value and celebrate my difference with me.
In a professional sense I begin to understand that this space I wish to carve for myself should accurately reflect my input, rather than involve continuing misjudgment on neurotypical terms.
What this does in practice, is allow me to begin to say difficult things. My gratitude to the Arts Council for funding my research is without bounds. Yet my research is uncovering issues buried deep within this organisation’s funding structure which are inherently ableist in assumption and unsurprisingly so. Cognitive dissonance is to be expected as this is pioneering work – Arts Council gives with the hand that holds present knowledge about access for disability, but withholds with the hand that isn’t there yet on autism.
Deep connective thinking will be needed to join it all up in my evaluation document. In recent days I’ve begun to recognise the bot like ways of my brain which is capable of mining and sweeping through certain kinds of information in a highly systematic way. Who knew! I struggle deeply with what is called executive function and am dyspraxic.
My handwriting is crap, I’ll fall off a bicycle, I can’t remember what I had for lunch – but I’m finding I can radically restructure a project, with the combined powers of hyper focus and ‘unusual logic’, in the space of a few days.
I’m living the truth that deep connective thinking can be one of the benefits and joys of the autistic brain – and that we lend this truth (this power) to the workplace. I’m of the firm conviction that we in fact often work harder and longer – because we can (hyper focus) and because we have to – but this tricksy notion deserves a post of it’s own.*
But it doesn’t take much of a stretch to multiply my own example by the many other autistic minds at work (and those barred from work through structural and overt ableism). Take that multiplication back through time and you begin to sense the web I began this post with.
I take huge strength from this notion – and I want us all to feel entitled in the best sense of the word.
If nothing else this is what I wish to pass down to my children.
So here’s to us all!
*This observation is partly founded on the knowledge that we are in many cases asked to work against our neurologies to conform, and that we work overtime to survive hostile sensory environments.
March 10, 2017 § 25 Comments
Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing.
This post is about access and exclusion.
It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.
And if you say thank you very much for all your kindness but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.
This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody – unless you fancy a nice slap down that is.
Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.
Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).
What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.
Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?
It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.
SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.
This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.
So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.
This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.
I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.
I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.
I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?
My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.
My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.
And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.
February 17, 2017 § Leave a comment
Brilliance. Another reblog – two in one day. I don’t reblog, have never reblogged but this this GOLD. Autist at Work has written brilliantly about the in-between spaces we find ourselves as artist professionals missing opportunity because we are in no category that is recognised or catered for. A must read for artists and arts professionals and anyone who cares about social justice in the arts.
Our autistic senses are tuned to pick up things, notice things, that others do not, as Rhi@OutFoxgloved wonderfully describes in this post ‘The day my autism saved my daughters life.’ Our always-on, delicate antennae are tuned into everything, so of course we can experience overload in NT environments, and fail to pick up things that seem obvious to NTs. We usually realise too late what someone meant when they were talking, as exact words and actions now sifted and processed, come back to us. In NT environments we can consequently be seen as slow, or uninterested, and underestimated.
Our thinking is immersive, our brains work overtime — whirring intensely and continually processing details coming from our senses, fitting them with our experience and skills, making unique connections. Sonia Boué‘s term ‘brain dancing’ describes this beautifully.
..into the museum
In one of the galleries is an extruded rectangular sheet of thin hard…
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February 17, 2017 § Leave a comment
I never reblog but this is exceptional – in it’s clarity about work accommodations and the disabling nature of unaccommodating colleagues or workplaces. I’m working on this issue myself and so the timing is perfect. Huge TY to Anonymously Autistic who wrote this post.
In an earlier post titled Autism is Not My Disability I said
“Autism is not the disability, although symptoms of my sensory processing difficulties can leave me crippled and unable to function. The disability is society’s misunderstanding of Autistic people.”
Although I still agree with my previous statement, I’ve been rethinking this title laity and feel a strong urge to elaborate.
First I want to clarify that there are parts of Autism that are disabling.
We can have mental disabilities, epilepsy, IBS, Anxiety attacks, chronic insomnia, extreme sensory sensitivities, and more. In my mind these things are not Autism – because they differ so widely in all of us. I consider these commodities are unfortunate side effects that Autistic people encounter (too often).
These things ARE true disabilities and are often invisible – so when I say Autism is not a disability, I mean Autism as a way of thinking in…
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December 12, 2016 § 8 Comments
@ Sonia Boué 2016
Angry voices snarl my Twitter timeline.
As usual it is one particular blog post and one particular individual causing the ruckus. Then others catch the bait, and on it goes.
Currently the official vs self diagnosis argument rages – triggering a daggers drawn stand off. It’s genuinely upsetting and frustrating for my fellow autistics. Horrible and unjust for self diagnosed people to be targeted and excluded by an ‘official’ autistic person. I’m staggered really that anyone would do this.
Of course respectful places exist where it is clearly recognised that self diagnosis can often be the only way for people to identify as autistic when medical model options are inaccessible. Official diagnosis in this sense is a privilege, especially as it can cost a LOT of money. I support self diagnosis, and as a formerly self diagnosed person I see it as a necessary arrival and/or staging post. Reaching self diagnosis for many is a prolonged and complex process. Whether official medical diagnosis follows can be a genuine matter of luck and/or finance.
I respect and understand people who don’t trust the medical system to validate their experience as autistics. For women especially, a failure in diagnosis can be devastating. We fall under the radar too often. While ignorance persists this remains a danger.
In whichever order and by whatever means we gain self knowledge and identify as autistic there is one clear fact. Autism is a life long neurological variation on the genome present from birth. In this sense (with the proviso that there are as many expressions of autism as people) we are all the same.
But I want to understand what makes one person reject a cohort of autistics (while admitting that self-diagnosed people can be autistic) as not the same.
Many will be familiar with the arguments – yes, the worry about fake autistics does feature in a big way. To be honest I ran out of steam and the words dissolved two thirds of the way through. The author was not able to hold my attention fully after a certain point. Sorry about that – I did try.
You will always get fakers and trolls. Self-diagnosis is not to blame for this and this ‘benefits cheats’ argument is frankly as thin as the hairs on my head. A tiny minority of people may abuse the opportunity to self-diagnose, but guess what? You can fake an ‘official’ diagnosis too.
I don’t believe that fake autistics are dominating the conversation or that neurotypicals are queuing up to become “special snowflakes” – how dismissive and hurtful to the self-diagnosed individuals who have made it to adulthood to look back on a whole life spent in complete bewilderment. The author has encountered views they don’t agree with among autistic people, and that’s called diversity.
I also submit that late diagnosed and self diagnosed autistics understand very well the following concerns (though we may not have lived them directly)
“We need to talk about how the employment rate for autistic people is devastatingly low.
We need to talk about how the law still arbitrary restricts the freedom of autistic adults.
We need to talk about how it is still legal for some employers, such as the Armed Forces, to discriminate against those with formal diagnoses.”
Some people like to stir controversy and we should think probably think carefully about giving them the attention they crave.
Autism does not reside in a medical report – and this is the point.
I get that the author of these words grew up in very different circumstances to my own. That is obvious from a simple biographical comparison. I was never at risk of institutionalisation or knew my difference it’s true, and on this point I hear them. But I was as autistic then as I am now. And last time I checked this was not a competition – and why would it be. In addition second guessing other people’s childhoods is futile and disrespectful.
There are many ways to raise this question of difference within difference, and I truly wish they had chosen a more constructive one rather than baiting already beleaguered souls. But we know that territorial squabbles are rarely kind and often bloody.
They also tend to be a bit of a dead end. Over and out.
October 9, 2016 § 1 Comment
My autistic friends span across the globe and often can’t come to my shows. I really want to share my most recent work with my community – it’s a project called, Through An Artist’s Eye. We will be uploading our project film at some time in the future – but I’m not sure when. So in the meantime I’ve uploaded a short video with an important message. My work has a strong political undertone, which deals with antifascism. Sadly this remains relevant and appropriate.