The casual cymbal and the traffic cop #autism

December 8, 2016 § 5 Comments

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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.

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

Mentors, peer support and fairy lights #autism

December 3, 2016 § 5 Comments

 

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Blogging is such a good way to let off steam and to disseminate information for autistic people.

Those of us newer to the game can quickly find our blogging forays replicated many times over in the online journey’s of other autistic adults. This is comforting.

Comforting in that we find ourselves reflected and validated, often after whole lifetime without it. There is a pattern to absorbing this difference it seems. Sometimes we just need to process and never mind the repetition.

Being a newbie I’m still learning. Unpicking the tangles created by not having known I am neurologically different in so many hidden ways.

These ways appear as tangled threads uncoiling and mutating into something bright and new.

Coordination is not a strength. Sewing can be a trial, often resulting in the sudden snag, mother to the multiple knot in thread. The kind which no matter how you prod it with your needle will never shift. There’s nothing to do but cut and start again.

We often live defensively because of our sensory and social challenges – but not knowing how we are different produces such tangles that the only thing to do is cut away. Lives disjointed and disrupted by not knowing.

Knowing is (conversely) to me a string of festive lights – a powerfully charged connecting cable. The pretty bulbs are of course ideas, or rather the illumination which comes with a knowledge that enables. They appear as a series at intervals, pulsing with life and good cheer.

The words that follow this train of thought are courage (that knowledge brings), and connection – not only is this circuit untangled and unbroken but it allows others to see you. Ha! Now I imagine a forest of fir trees in which some are blinking out coded messages – it’s getting to look a lot like Christmas (for which I apologise). But yes…

Beaming out and beaming in – it’s the kind of thread you would never dream of putting a blade to.

These are thoughts that rise and fall, and sometimes turn and twist as I consider all the voices and the often bewildering array of arguments about autism and neurodiversity.

The signalling taking place between autistic people is crucial to us staying whole and untangled. I have come to believe that for once it’s something the neuro-normative population can’t be part of.

More than this.

It’ s this signalling that rights us and sets us on our way. Neuro-normative culture is so pervasive that it threatens to block the light. We need good allies in our struggle for civil rights but…

It’s my autistic peers and mentors I turn to for a very particular kind of support.

 

 

A difficult conversation #autism #mutism #neurodivergence

November 23, 2016 § 4 Comments

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I’m trying to untangle a conversation. It was a brain ache.

Complex new ideas were being put forward and it all took place on Twitter, which probably didn’t help. I mainly watched and processed as two individuals talked about difference vs disability.

Others joined in expressing first confusion and later distress.

It is indeed distressing not to understand in the context of autism, where misunderstanding  can feel like the default position.

How to trust your voice? How to be sure that the more fluid and practiced voices are spouting a version of reality which is true to you? Aspects of what they say might sound familiar – and possibly correct (it will likely be correct for them but what about for you?)

How to hook it up and see if it fits in the moment? Trying to follow such a conversation can feel like the knitting needles clack without you moving them and the garment being made is too tight and full of holes. The wool is scratchy and your nerves are frayed.

The person being challenged in this conversation was autistic, the one challenging identified as neurodivergent unspecified (ND). But clearly not autistic.

I had the sinking sensation that the autistic person was being probed uncomfortably.

No, this person had no ill intention I’m sure. In their eyes they were looking for the “truth” – which is often shorthand for; agree with me and see it my way.

Treating an autistic person like this is an example of not listening. And yet again the autistic person is denied validation and told that they are wrong. They are made to justify their position and told that it is wrong.

The non-autistic person doesn’t understand the position being taken – therefore the autistic person must be wrong because it is too difficult to take a step sideways and ask – how is it really in your world.

This person’s starting point was that they were ND too with the assumption it seemed that we should therefore all be singing from the same hymn sheet. (Personally this is my ongoing frustration with the new terminology we are all currently adopting).

And for a period my timeline was dominated by the ND unspecified person pressing the autistic person on their position. With the suggestion of ableism rising to the surface though quickly retracted.

My only contribution was to ask for respect and attentive listening but this remained unacknowledged.

I am deeply discomforted by this experience and ask is it any wonder that autistic people often fear to speak and that autism is associated with mutism in it’s various forms.

Such experiences confirm that the term ND doesn’t guarantee safe spaces and isn’t always a useful term.

I have also found trusted and willing ears on my many travels – but I wish it wasn’t this difficult in general terms. That autistic people could be encouraged (especially within the growing  neurodivergent communities) to forge an identity and to self lead.

It’s not asking much and is actually a basic right.

No one wants the scratchy jumper that doesn’t fit.

They Slept in a Forest: a tale about a Nazi round-up to Mauthausen camp.

November 15, 2016 § 1 Comment

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They Slept in a Forest ©Sonia Boué 2016

I have been working on an absorbing project about a British antifascist artist called Felicia Browne who fought in the Spanish Civil War.

But now the ghosts in the studio are stirring and I’m back to the origins of my work, back to the heart of my practice; my family history rooted in the traumatic and bloody Spanish Civil War.

Two days before my Felicia Browne work was to be installed I returned to my studio – the project had taken me away from studio work into filmmaking, writing and project management. All that was finally done – and I picked up an old board and instinctively brought in a new element of collage using two family photographs. The narrative of my family’s rupture is contained in two photographs – the one of my grandparents has been with me forever but I had no concept of its meaning until I began Barcelona in a Bag back in 2013. The photograph of my father was a later find but its significance has come to prominence in its use as part of the Felicia Browne exhibition – demonstrating our intersecting histories.

This work will form part of a small installation, which is slowly evolving, but already the elements are gathering. I’d planned to take my time and sit on this work until it was ready, but I can’t. World events mean that however little one person can make a difference not speaking up is far worse.

The narrative I will be working with is of a Nazi roundup of almost a thousand Spanish Republicans on 24th August 1940 at Angoulême. This was where my grandparents and great grandmother were living in exile, they had been released from internment camps and were living in rented accommodation and working in a munitions factory. Somehow they evaded the roundup and did not board a train carrying refugees to the Mauthausen “work” camp.

My mother has been the keeper of a fragment of oral testimony to this moment. The title of my piece will be They Slept in the Forest.

This is what we know, and this is all we know – that they evaded capture by spending a night in a nearby forest. They knew.

How they knew and what they knew remain unknown.

To show my work I need a gallery space. The hunt is on.

NB This post has also been published on my a-n artist blog. 

Pinball brain #autism

November 8, 2016 § 4 Comments

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I should be writing. I am writing. I’m also experiencing pinball brain – and so the writing is taking longer.

Writing is taking longer as I linger on screen, clicking when I should be tapping.

Oh dear.

Linear sequencing is painful. I try to squeeze my brain into shape but it keeps shutting down. Or shuttling off.

Shuttlecock?

No, pinball says it best.

Ping pong too.

A ping pong pinball brain.

Not wizard.

 

 

Olives are not the only fruit #autism

November 4, 2016 § 1 Comment

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Except they are. Well, apart from bananas. This is what functional gut disorder means in my case. There are virtually no fruits left that I can tolerate but I’m pleased about olives because I LOVE olives.

Occasionally I eat other fruits but stick to one or two raspberries, or three strawberries. Mainly to minimise the damage, knowing that any more will be disastrous and not worth such  temporary bliss on the tongue. They taste good but they don’t do good.

I’m not complaining because I’ve learnt to adapt to my extremely poor digestion with the help of the very lovely and talented @flojoeasydetox who has given me dietary advice that enables me to live and work effectively – something no-one else has ever achieved and I’ve been to more medics and nutritional specialist than I care to mention. For this, and because she’s lovely, I LOVE Flo (she also takes Skype consultations if you’re interested.)

Being autistic brings with it co-mordbid conditions and dietary intolerance seems common.

But I haven’t really come on to the blog to write about this, however debilitating and eroding it has been to deal with over the years. I just felt so cheerful about olives today, so grateful and happy to have them. So they come first.

More important is my growing understanding of how some people can make you feel like their time is more important than yours as an autistic thing – a thing that happens to autistics I mean. ALSO how bad this feels.

Today I spent a lot of time counselling a young autistic person on some serious social worries. Neurotypicals vs autistic social processing translated, if you like. The metaphors which helped most were fast lane/ slow lane (even hard shoulder at times), and paternoster / elevator. Not hard to guess which is NT and which is autistic!

As I spoke with my young colleague I felt on absolutely certain ground. Hey – this is so not personal when you look at it like this. What seems like indifference is just heavy a volume of  traffic for them while you’re interested in one to two cars.  Also think about what the NTs miss out on – they miss out on spending time with you. Don’t think so much about fitting in and accommodating their needs – they have so many options they won’t even notice how much effort you’re putting in. You do what you need to do for you – conserve your energy.

Without realising it I was counselling myself.

A strangely challenging situation I’ve been dealing. Wow. THAT. A person making me feel their time was more important than mine because they were so busy.

Thing is with autism is that our processing is often slower putting us at a huge disadvantage in understanding the subtle balance of power exerted by those more ‘socially skilled’.

Conclusions :-

Jeanette Winterson’s Oranges Are Not The Only Fruit  is the inspiration for the title of this blog – I recommend it.

Also that for autistic people to locate and ground ourselves in social spaces we must first find not only bodily sustenance, but also the metaphors with which to legitimise the bodily manifestations of neurology. Neurotypicals may cruse the fast lane and whizz round and round in the paternosters of social life but this can mean that they are incapable of valuing autistic perspectives.  And so we must start by valuing ourselves.

Lesson learned.

Emotional processing #autism

October 22, 2016 § Leave a comment

 

 

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Selfie with my Arts Council Funded work for Through An Artist’s Eye.

This post is about one insight into autistic processing from a very personal perspective.

I’m beginning to learn a little more about my own emotional palette, and perhaps why my responses may not be quite so ‘in-tune’ with non-autistic people’s. This is one of the mismatches in experience, which can make a person feel remote from ‘the crowd’ or ‘outside the norm’.

Recently I’ve been showing some publicly funded work and rolling out a series of events relating to it. In all cases the work has been extremely well received and “public engagement” has been high. This is arts funders speak for people really getting and liking what you’ve put out there.

I should be happy and at the very least relieved. But I’m neither. Partly because it’s been hard to generate a wider buzz off all this good feeling about the work. My last blog post is about my sadness about not reaching more people. This is frustrating even though it’s completely understandable. Competing demands in an overwhelming world make dissemination of new material a real challenge.

But also (and probably mainly) I can’t feel great because I’m exhausted. More than this I’m numb. Behind the scenes I think I’m probably just processing but I feel empty – emptied out.

Like a sudden glimpse of yourself in a mirror, yesterday I caught a flash of insight as to why this might be more so in an autistic person. The sheer physical effort of managing the extreme demands on mental and physical resources is what gets in the way. Working on the principle that we have to work double – due to our sensory and processing challenges – just to keep up with neurotypicals, imagine working four or five times as hard when you have an extra heavy workload.

It is also the case that when we give our focus to a project we’re likely to give over and above the norm. Due to an unusual ability to focus on one thing at a time we probably go deeper often.

Yes.

Although feeling happy is natural, accessing or even processing emotions demand resources, which in the moment we might not have because we’re all done.

There may be an understandable delay, by which time the moment has gone. Emotion disconnected from source is hard enough to access, let alone decode and then express to others. The joy might never arrive or be conveyed. A vital component of positive feedback lost.

It’s distressing or a least puzzling when you know you ‘should be’ feeling something but you’re not.

I wonder if this is why neurotypical observers have interpreted autistic people as being characterised by ‘flat affect’. No – we’re probably just keeping it together in the moment. No – we’re having to work hard most times, that’s all. And then we’re probably having to deal with the aftermath of dealing with…

This goes further in explaining the so called  differences in “autistic motivation” which may be partly to do with perspectives on the world. But I begin to realise there’s much more to it than that. A thing has to be truly worth doing to expend such vast resources on – there have to be significant gains when exhaustion is the end point AND you won’t necessarily feel the joy of feedback in the moment.

I wonder too if the delay in and sometimes disconnect with our emotions is why we need to replay events (almost on a loop at times) until we get there – if we’re lucky.

Right now all I can do is trust that joy, or it’s good friend relief may be round the corner.

 

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