A difficult conversation #autism #mutism #neurodivergence

November 23, 2016 § 7 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 § 7 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.

Where Am I?

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