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 18, 2017 § 2 Comments
I wake up and I am in a foreign country.
I am not the same shape I used to be. Literally I am heavier – when for decades I was almost too light. Fearing perhaps to occupy too much space. Now I am more certain (though still hovering) and there is more of me it seems.
But this is not the only change.
Each day I wake and stumble to my laptop. News. Views. News.
Are we near to armageddon? How near?
I follow trails – endless trails, down endless rabbit holes it seems, which echo with endless bile and all that political chatter. Not idle. No. But quite quite mountainous.
And yet my ‘unusual brain’ (a bloodhound of sorts) hunts on (and on). Seeking patterns to arrive at meanings. This time predicated on fear.
This is what I do. What I was born to do. With a thirst to know.
But it occupies me. Engulfs me. And I was warned not to.
And this is how I come to be in another country – not close but distant.
But somehow the change in me is greater, although you could say that extraordinarily the axis (internal and external both) are spinning (not turning) simultaneously AND in opposing directions. SO that the largeness of it all is rather more than faintly disconcerting.
The shape of me, the shape of IT. IT being a world mediated through the click, click, click of my machine.
Important to understand that the physical spaces surrounding us have not changed. Though they may yet. When bins are not collected, when welfare ceases to exist. When UK becomes officially FU (FUCK YOU) and goes it’s separate ways.
In the same way I don’t want my country to be chained to Putin or his puppet Trump, I do want to live and preach autism as identity, culture, freedom and a right.
What shape is it though (this autism I mean). What shape am I?
And here I am my best friend. My bloodhound brain. Will. Sniff. Sniff. Sniff. Until I know what and how to be.
It is happening – both inside and out. The revolution is coming.
How terrifying and extraordinary (both) to be living in this moment. Of personal discovery and political threat.
I watched a brilliant Up Front programme on Al Jazeera called, The rise of populism: Should we be worried?
My take out is that we can no longer take many of our fundamental rights for granted. In truth disabled people NEVER could.
ACTION is required. And yet it always was. It simply means I. We. Will have more company.
In this sense my timing is good. I. We. Those among us who believe equality of human rights must begin to define ourselves, own who we are and occupy more space.
My search for meaning. To understand. Is yielding results.
No, no. This is not me being engulfed. It is research by immersion.
Autistics own it.
Kick that talk of ‘obsession’ – this is how WE work.
February 9, 2017 § 3 Comments
I’ve begun to talk more openly about the nature of the challenges which affect my working life.
The other day I shared on Twitter that I was having a bad sensory day, not really expecting any kind of response. Minutes later a bunch of seriously thoughtful notifications came through and I found myself breathing more deeply, and a definite prickle behind my eyes. Tears! Not quite – but almost. How long have I struggled without knowing my struggle? How difficult at my age to begin to say it…
I have an important meeting today. It takes place in a city which is easily accessible by train or car. I could drive or travel independently by public transport – and the single journey can be made in just over an hour or two.
The car journey is easier in one sense – a controlled environment, limited walking and a door to door experience. Yet a round trip means calling on almost 3 hours of mental concentration. Getting there is the lesser challenge but driving home after the exertions of the day will be extremely taxing. Mental exhaustion affects coordination and so driving requires hyper vigilance (way to ramp up anxiety levels!) I will arrive safely but be incapable of talking to my family. Recovery could be a long while.
A train ride is easier in another sense – getting on and off require focus but the main event can be spent in drift mode if required. Yet the train adds in a journey to the station at either end (walking or on a bus/ taxi). The sensory environment in each case will be unpredictable – sound and olfactory challenge can go a multitude of ways ranging from pleasant to nightmarish. Lighting and ambient temperature are in many ways more significant to the sensory load in my case. Navigating new routes weighs in like a tonne, which can be exhausting.
Just months ago I would have taken a physical journey for such a meeting.
But there would have been tremendous consequences for me and my family, and my capacity to pick right up and work the next day. My journey would not begin and end with the train or the car. I calculate that such a journey with a meeting of this type would have a major impact on my ability to function. The number of days lost is never predictable, only that there will be a significant sensory hangover with a loss of energy and resources. Modalities can shut down entirely – loss of speech or the ability to tolerate sound or light are classic effects. Retreat to a dark and quiet sanctuary for recovery time is unavoidable.
I’m getting to grips with why and hoping to do so in a more formal and systematic way but for now this is what I’ve got.
There are multiple tasks involved to arrive at my meeting, tasks which are usually obscured by neurologically biased expectation regarding functionality.
The ease with which any person can navigate the tasks involved is probably dependent on sensory regulation, and calls on a sensory system which is predictable and filters input without disruption or delay.
We know that non-autistic people experience regulatory difficulties too – at times of great stress, through drinking too much caffeine and according to natural variations in this population, (anxiety, indigestion and insomnia are not ours alone!) Such difficulties are known to affect functionality in the short term and health in the long term.
Imagine that for the autistic person this can be exacerbated by ‘ordinary’, or rather, ‘neurologically biased’ work demands, such as an out of town meeting.
I think that for ‘neurologically biased’ we should read neurological privilege and allow that working accommodations begin right there. But first the bias must be revealed and spoken.
So today – in a few moments in fact – I will arrive at my meeting via Skype. This is the kind of accommodation which for (by now) obvious reasons can be a deal maker in how well I cope and recover from the effort of decoding a multiplicity of interactions with my new colleagues.
December 30, 2016 § Leave a comment
It’s been my first autistic Christmas. Well the first one since my diagnosis (in March).
In the run up I was less than enthusiastic – I’d managed to get pretty run down this year with no time to process events due to an extraordinary heavy workload. Christmas was almost here with no time to prepare. Or so it seemed to a tired brain. Until several days beforehand.
And then it dawned. Christmas wouldn’t be the same this time. We could take all of the pressure out. And we did. Mostly.
I felt joyful.
Decorations went up late and were minimal.
We had no radio blaring carols.
I refused to buy too much (and nothing which wouldn’t be useful), and avoided the sales.
When I popped into town I gave bank notes to an elderly woman sleeping rough instead.
I watched some carefully chosen DVDs but no TV.
I stayed away from Social Media (except for a couple of positive exchanges) and blocked a few random Twitter haters who found their way onto my timeline.
Mainly I stuck to my Bulletproof diet – so my digestion didn’t suffer.
I learnt to make broth over the holidays – the meanest broth, which could probably raise the dead. Ordinarily cooking isn’t really for me but with time on my hands I got my mojo back and rediscovered the soup queen in my soul.
I gave my attention to family, but allowed them to scatter to the four corners of the house.
And I didn’t feel under siege or responsible.
I saw a short 1956 film called The Red Ballon. It’s so beautiful! It speaks to me in a language I understand as autistic. A language of objects and poetry.
It’s taken me so many days to wind down but soon I’m going to need my routine.
December 22, 2016 § 4 Comments
Awareness unfolds. Eight months have passed since my diagnosis of autism, and still the realities of what this means reveal themselves to me bit by bit. Or perhaps that is whole by whole. There is so much to know and this seems at times vast – like a powerful ocean tide around my feet, or whole constellations twinkling above me.
I can’t tell how many such moments there will be, or how deeply they’ll take me to a core of knowing.
It feels infinite and beautiful. Knowledge is secure at such times – perhaps this is a oneness I feel, with the elemental. Having nothing to do with earthly life as lived via human design, by which I mean roads, houses, cars, buses and planes. The realities of the machine, and now digital age/s.
And in reality I am the most machine dependent person. I am a city rat (small city please) and like my amenities close at hand. So I’m not against that. But we have screwed things up. We have, oh we have!
But I’m not about that in this moment. I’m taking a break from all that kind of thinking, and the cycle of terror and hate we’re locked into as a species.
This is about breath, blood and bone. The only thing we truly know is in our bodies. We must trust our bodies.
Autistic people spend their lives being told that their bodies malfunction. They can’t regulate, they can’t coordinate, they cannot process.
What is true is that we can’t do it like the rest of you (you mythical ‘normals’ who are in truth as variegated as we autistics).
So I’m learning to do things my way. Be how my body needs to be. Allow my mind what it needs to function my way – without judgement or interruption.
Oh ‘normal’ world! Can you imagine what it is to be a child, to be in school, and to find nothing but interruption and judgement? And not even knowing. To not know that this is what is happening to you…
Your body learns that it is wrong. Your body learns to contort and try to be right. You learn to approximate to this thing called ‘normal’.
This is the unlearning that has to be done.
I look back and see a small child. I often hid in small spaces. Under tables and behind curtains. I was ‘naughty’ and knew I was bad. Grown ups seemed random and foolish, and school a place of boredom and lies. I noticed the arbitrary, and was not impressed.
But soon I learned to contort. When did I learn to be unimpressed with myself?
This is the unlearning to be done.
December 18, 2016 § Leave a comment
(This is an image from my studio of work in progress on events relating to the Spanish Civil War.)
A hilarious exchange about a mistake on a station platform. A deep conversation about family life.
I get up and down from my keyboard. I stir a broth on the stove and empty dishes hot from the washing machine. A fan whirs but it’s okay, I have my headphones on.
All is quiet.
I gaze at the twinkling lights strung around the room and note how peaceful this is. We are warm, we have eaten well.
That feeling I love comes over me. I remember all those other moments when my kitchen has felt like the engine room of a ship at night on a calm sea. It will take us to our destination, with the quiet and purposeful hum of machinery that works effortlessly well.
I first discovered the engine room when I held my second baby in the night as the dishwasher purred and she settled into the white noise.
Plates will be clean, mouths will be fed, we have shelter.
I move out of my chair again to pause for thought, stack cups in the cupboards and know the freedom to range and write, range and write. This is the autistic way sometimes.
We may need movement to think. The kinesis of my body takes my thought a step on to where it needs to go. But this is me watching me.
I have also observed the world. Click, click, click. I’ve been to so many places in one day. Click and click.
I’ve been to Aleppo. I’ve seen the film about the children who can’t cry. They no longer cry.
Covered in dust and dried blood these infants say nothing. They walk with wide unblinking eyes and are led by the hand by strangers. They observe the adults around them. A mother, clothed in the same matter, cries for her children who are all dead. A youth carries a bundle in his arms as he weeps. His dead baby brother. Without a father he takes his place.
They wait to learn if their mother is dead.
I am watching the intimacies of others – I am in places I shouldn’t be. Click. Click.
I am watching what I’m asked to witness by a news agency. I am watching the end of worlds.
In Aleppo there is no engine room, no string of lights, no broth and no-one is free to range and write.
In Aleppo there is slaughter and more to come.
We watch, we click.
But oh – we move on…
And turn our attention to our peaceful homes.
And we complain.
We complain about the stupid things.
© Sonia Boué 2016
December 8, 2016 § 14 Comments
It’s been interesting lately. Autistic truths rain down on me and I make progress in my understanding of a fundamental difference – it’s the day-to-day truths that crystallise and move in.
I am at a concert alone because my husband is ill. My strategy to arrive just in time mainly works. I gain a seat at the back (I won’t see my daughter – competition for seats is a ruthless elbow grazer and not for me – but I am near the door). At the last moment I see someone I know, and we talk briefly before she finds a seat. This is okay.
Half familiar faces blur around me. I’m not sure whether to nod, but our eyes don’t meet – so I guess not. I glance at my phone, send a message, and feel the comforting spine of the book I prepared earlier. It takes a minute to notice that the noise is extraordinary. The acoustics in this elegant and lofty church are too good . The babble of voices casually cymbal – in every pew people are talking. For me this is waiting.
But the lighting is gentle and the air is warm, yet still I wrap my legs in a tight knot. How did I never register such tension before? It’s a classic me pose and my hips feel brittle and worn – as thought they might snap.
A man stands before us to make an announcement. He does not understand about voice projection. His underwater mumbling tickles my funny bone and I exchange amused glances with a young woman I realise I do know across the aisle. I’m now in deep peril. Uncontrollable laughter (silent shoulder shakes) could seize me, and so I gulp hard and look at my feet feeling lucky that the woman sitting next to me shows no social interest in me. This is all so random. I sit at the shore it seems.
I am relieved when the choir files in, knowing that I will cry and no longer feeling shame. I have tissues and am prepared – learning to savour this trait and understanding that my tears are a bodily reaction. What I experience is a simple response to stimuli by a hyper sensorially alert nervous system. A system so calibrated that I am highly attuned to danger and emotion – this is the core of my difference and why I can’t shrug off the ‘ordinary’. These are assets as a mother and an artist – I can enjoy my tears. I’m grateful at last.
These voices are exquisite – many on the cusp of womanhood pierce my heart.
I hang in knowing that this will probably take an hour, maybe more (but not by much I hope). More than enough time to get distracted, notice a child playing with her muffler (oh the boredom at that age!) and her mother steadily marking homework with a red biro. Admirable multi-tasking. Discreet too. The kind of hands whose writing could probably stay neat on the deck of the Titanic. Momentarily I envy her, my mind playing over the myriad circumstances under which I lose coordination and descend into scrawl. Indecipherable letters but mine own, now revealed as part of the greater whole.
The other day I imagined the difficulty managing information flow (of all kinds including sensory) and coordinating responses in autism as the want of a traffic cop at an intersection during rush hour.
But it’s always rush hour unless you make it stop. You make it stop by withdrawing to where you can control the flow.
It’s very simple.
But there’s more. I have not bargained for the ultimate neurotypical surprise. The interval! After 40 minutes things stop. What?
People it seems would prefer to have a break from the music they’ve come to hear to talk to one another some more, and drink from an assortment of hot and cold beverages of the type they can have at home! Good God! This is fantastically strange and eccentric.
It goes on. I am blessed. My daughter arrives knowing that I will be at sea, she thinks to come and give me a hug and takes time from the dressing room to swap notes on the hours we’ve spent apart. I tell of my astonishment – the ways of the socially needy! I whisper.
We smile and the room dissolves.
© Sonia Boué 2016