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.
September 1, 2016 § 13 Comments
This is about when neurotypical (NT) people over-identify with an area of autistic struggle. If you’re autistic you’ll know exactly what I mean, if you’re NT – I’m not being rude but – I could be talking about you.
Why complain you ask? Identification is surely good?
Well…no actually, I don’t think it always is. In fact, this is something which can get in the way of autistic people being heard properly and fairly accommodated.
Many autistic people experience this over-identification. Often NT people begin to think that they themselves could be ‘a little bit’ autistic, with a matching and equal array of challenges.
It is a natural human response but it must be curbed when it comes to neurological difference.
This is not empathy. In fact this blocks empathy. Such NT responses are acutely demoralising for autistic people because they minimise our struggle.
And today my heart sank a little because…
Yesterday’s blog post about autistic artists and the inherent difficulties within professional structures and systems – including Arts Council England funding application processes – is already attracting the ‘me too’ response.
Autism poses unique challenges, which are not faced by NT people. This truth has to be absorbed more widely.
More specifically, if NT artists find the professional structures of the art world hostile and difficult to navigate, that sensation should be magnified twenty fold to understand the barriers to autistic professional progression.
A core challenge of autism resides in the specific area of social pragmatics, which just so happens to underpin every aspect of managing a career in the arts. Strengths in social communication are pretty much key.
This is why – of late – I consistently use the term autistic, rather than the terms neurodiverse/nerurodivergent in my blogs, because I believe specificity can be helpful in certain contexts. We are part of a larger group who are not ‘typical’, or rather which makes up a neuro-minority for whom existing societal practices and structures are disabling.
Yet we need to signal clearly exactly what our challenges consist of and I would like to try to articulate this the simplest terms regarding a defining and core aspect of our struggle.
The extreme emphasis on, and burden of social communication within an artist’s professional life creates a gross inequality for autistic artists, which operates across the board and at all levels.
I believe that if more NTs can manage the job of empathising with this – rather than imaging that they share in this singular predicament – we will have made progress.
Every glimmer of genuine empathy really does help us move towards action and change.
August 31, 2016 § 3 Comments
It’s been a rum two days.
First, a hateful article in a UK newspaper, which I’m not going to quote or link to. Defamatory language about autistic people can and should be challenged, but traffic denied.
I refuse to amplify ignorant, stereotyping voices, and the suspicion that it was click bait all along settles in.
Second, I find some very old comments on a news feature on my art blog site which relate to my video of February 2016 in which I critique Arts Council England’s funding application process for neurodivergent artists.
Comments which would make any sentient heart bleed.
“I have accepted a residency in Iceland but I don’t think I’ll be able to go because the task of finding funding appears to be beyond me.
I am also neurodivergent. I can’t seem to forward any of my projects because I just can’t overcome my disabilities effectively enough or find the help I need. Today I am literally just sitting crying because I can’t see a way forward…”
And suddenly I find my tolerance at a low ebb. I can’t sit back and say and do nothing. So I begin to Tweet – to various relevant bodies even though we are way after hours in the UK. These are tiny public acts, liable to be missed, and I’m suddenly also sickened by the imposed invisibility of so many of my fellow autistic art professionals. It’s time to get back on my soapbox and make some noise.
August 23, 2016 § Leave a comment
I’ve had some lovely responses to a fledgling poem called Dead Squirrel posted last week. Since then I’ve been extremely inspired and of course, poetry is fast becoming my new ‘special interest.’ A huge thank you to all of you, and a special wave to Sophie Herxheimer – for a dream crit from a National Poetry Day Ambassador no less! Please catch up with all Sophie’s brilliant projects and achievements here.
I find that although my topics are at present quite varied I’m extremely interested in articulating my experience of being autistic. I can see this becoming a thing. So here is a new poem I’m working on. Again crit is welcome.
The logic of not having any
(on late autism diagnosis)
“The unusually logical approach to life can be both a positive and a negative attribute.”
And in the middle of life, I find
that I am the odd one.
And yet, unusually logical
I spill at the ballet recital,
a concert or a play,
and dumb advertisements,
which cause my eyes to leak.
But I’ll take a scythe
where others linger in the maze,
wasting time and getting lost.
And drum inwardly,
as meetings meander into jolly rambles,
worth horning on our hiking boots for!
Because crisps and sour booze
could all be had at home.
Was that the point after all?
Unusual logic confers
the cross purpose.
And I, rarely finding myself
even on the same pages,
sit and fiddle, playing catch
with my short attention span
until it’s time to leave.
© Sonia Boué 2016
August 12, 2016 § 8 Comments
Photography Stu Allsop: At RE:collections at the North Wall Gallery, Oxford.
An interesting article appeared in yesterday’s Guardian newspaper, featuring my good friend and fellow autistic artist Jon Adams.
I like this particular quotation from the piece,
“Adams says it’s impossible for his autism not to affect his work. “It’s not separate so it must inform every bit of the work I do, even at an unconscious level. I make work touching sound, finding patterns and observations from my life all woven together as one.” He feels it may even give him an advantage: “It’s both my downfall and my creative edge,” he says.”
I’m chuckling though.
“…may even give him an advantage…”
Are you kidding?
While not wishing to indulge in trumpet blowing, I have to say that autism is of course advantageous in the making of art. No question.
Jon and I have talked about this on several occasions and conclude that art making has emerged in our lives as an inner compulsion – we live and breathe it – this is what drives us to create to our best abilities. Hyper-focus, perfectionism, task completion and originality (by default we see things differently), are my four (not so) secret weapons.
This doesn’t make me Rain Woman!
AND there is a downside. In the making autism is an advantage, but it is in the professional development and dissemination of our work that we often suffer.
Professional structures are socially driven and thus biased against autistics.
It’s a criminal mismatch when you think about it.
All that creative talent and very little scope for opportunity.
What a waste.
August 7, 2016 § 21 Comments
Photo by Stu Allsop
You matter. You matter an awful lot to me. I love my fellow humans and often wonder if they love me back the same way.
Being autistic for me is largely a total blast (“co-morbid” conditions excepted). Diagnosis has opened out my horizons and I find, after a lifetime of teetering between extreme caution and bold experimentation, that there is a middle way. A me way. An existence self-determined (within the usual constraints) and mainly me shaped. I love it. Love knowing who I am, and playing to my strengths.
Without diagnosis I was often – in my own perception – the sum of my weaknesses. Holding on to the corners of my life in snatches. This was, I now think, because I didn’t know how to look after myself. So knowing makes ALL the difference to how I can live more comfortably in a sometimes hostile world.
So newsflash everyone! Autism is very different from neurotypicality. No matter how much you (neurotypical friend) empathise with me (and vice versa), your struggle will never be mine nor mine yours. We are parallel beings, always and forever. And for me parallel is where it is at. Gorgeous and fleeting or pause-full and reflective. Parallel is tops for me. Head on and glancing (in that touch laden sense) – not so much.
And so on to social contact, and one small observation among the myriad reflections that bounce across the pond of self-knowledge that comes with diagnosis.
Neurotypical people seem to cram a lot in. I’ll give you a recent example.
After one full day – admittedly a working day – of pleasant professional interaction (during which so much personal information had also been exchanged) the question of what everyone would be doing after work arose.
Hmm. I stayed quiet, while others in the group told of plans which sounded like the chapter of a novel; entire segments of buddy movies flashed before me, the jaunty theme tune of the TV series “Friends” played in my head. I struggled to focus.
As an aside – it is interesting that neurotypicals like to ask about such plans (of which they won’t be part) and I have a light bulb moment. Aha! This is so the threads of future conversations can be taken up with ease – how did it go the other night – and so on. Smooth social baton-carrying from one lap to the next of busy social lives.
I stood politely listening, nodding. My turn to speak didn’t come. It was all quite natural. No-one noticed. Except me; and I smiled to myself. Not only was the conversation about to close but I didn’t have to explain that I had no further “social plans” for the day. I could have said (in a somewhat formal in tone),
“You have filled my cup and I will now go back gratefully to my family and chill.”
It would seem to be quiet a radical statement in the context. Huh? You don’t have a plan? Er…that is my plan…AWKWARD.
Now that I’ve thought it through I see that it isn’t awkward at all. I’ll grow more confident in saying quite simply that my plan is to decompress, and thank you for asking.
But back to my theme – this “cramming” of life with people isn’t confined to the after work scene either, I notice. Social time can be followed by further social time – the cramming (for example) of a coffee/lunch/day out with me (I have puzzled) is often followed by another plan my neurotypical friends must dive off to. Needing to get back to more “urgent” socialising is a definite thing.
It can feel odd.
As in, OH?
People appear so vividly in my life that I savour and absorb them. I also need time to get back to myself, back to the quiet core of me. Too much of the other and I literally don’t know who I am.
The strangeness is that it isn’t so for everyone. That human interaction can be so casual as to facilitate a rapid pole vault from one encounter to another is quite a concept for me.
What does this tell us about the quality of social interaction in either case? I’m really not sure, but an analogy comes to mind.
Dear friends and colleagues – when we meet I’m fully with you and you are my champagne. You DO fill my cup, and it’s delicious but will go to my head if I drink too many glasses, AND I can’t go from one glass to another in a social whirl. It simply doesn’t work that way for me.
The neurotypcials I know seem to have better heads for champagne metaphorically speaking; socialising as their lemonade to my bubbly would explain why they can drink so much more.
Intensity of experience is the difference, making serial socialising as hazardous for this autistic woman as drinking too much champagne. Think of the hangover!
July 29, 2016 § 3 Comments
(Me aged 6. A favourite image taken in Paris. (Small, long haired girl sticking her tongue out at the camera, in a tie dye t-shirt))
Overload, overload, overload – rhythms drum in my brain distorting voices. I stare blankly at nothing in particular, my eyes are wide. Limbs numb, I turn to my blog to release the pressure valves. Truth is I’m tired, so tired.
I have been working flat out on my project since December, with successive deadlines for each branch or phase coming at me in rapid succession. Currently I’m bringing together all the material for a small publication and working on our short film too. It’s incredible how many different skills are required of the professional artist these days, and how many people, settings and organisations must be navigated to bring a complex piece of work to a successful conclusion. All present extra challenge for the autistic person.
Luckily I’m extremely motivated AND I have my secret weapon. HYPER FOCUS.
I know too that if I rest I will recover.
What is proving fascinating is working with neurotypcial colleagues as an openly autistic professional for the first time. I’m very aware that I do many things differently and have been careful to outline how this works in practice. Cognitive load is my main challenge – my big ask in seeking accommodations has been to limit communication to the minimum where possible. Neurotypical brains seem to thrive on keeping each other in the loop constantly (the practice of copying-in to endless emails comes to mind), where in in my case I work better gathering thoughts and information quietly and sharing the fruits of this process when there’s an obvious point in doing so.
As I learn more about myself (I was only diagnosed in March) I can begin to see how to manage my time and interactions more effectively. I find that neurotypicals like to blend work talk with social chat often – it can be exhausting when your brain would prefer to focus on the task in hand and you can feel the sands of time running away (there’s a distinct sense of derailment). I love social chit chat, but for me it’s important to conserve the battery power for work if that’s supposed to be the main event.
There are calibrations in relationships to be made and strategies to be formed in protecting and conserving power in the autistic working life.
Mainly, I’m having a blast. This has been one of the most rewarding and productive periods of my professional life and I’m learning so many new skills. I’m also learning that when pushed out of my comfort zone I have some serious advantages to draw on. Being autistic is one thing. Knowing I’m autistic means I begin to fathom how to use this particular wiring to my advantage (as all autistics are different I am talking about my own blend of autistic and personality traits).
I’m looking forward to more knowledge and a greater facility with which to navigate the neurotypical workplace – including seeking the right kind of accommodations. To become a fully self-directing individual with any chance of finding parity in the workplace, the question of diagnosis seems to me to be key.
Female autistics especially, don’t let any professional tell you differently.
NB. I include self-diagnosis as a valid form of identification. Formal diagnosis can be inaccessible to many autistic people for reasons of cost and underdeveloped knowledge and healthcare infrastructure.