Autistically speaking…

February 20, 2017 § 1 Comment

 

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A foreign country and a bloodhound brain #autism

February 18, 2017 § 2 Comments

img_8675I 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.

Click…click…click.

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.

diversity and a piece of white plastic

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.

AUTIST AT WORK

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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Basic Accomodations – I’m Not Disabled By My Autism, I’m Disabled By Unacomodating People

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.

Anonymously Autistic

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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Autism: sensory challenge, overload and functionality at work.

February 9, 2017 § 2 Comments

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Detail from a series; LANDSCAPES OF RESISTANCE  ©Sonia Boue 2017

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.

Yes.

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.

Landscapes of Resistance #Resist

February 7, 2017 § 2 Comments

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Work in progress in my studio.

(This configuration is almost accidental and will change – the hanging doll at this stage has no clear meaning)

How to deal with the political emergency in the so-called United States of America?

I’m working on a funding proposal which means I’m online a LOT. Application is online, I also need to liaise with my collaborator – and then there is pinball brain. The brain I’ve written about before.

And so I click.

And so I see, and see. I read and read. Acres of online print – the Tweets, the links, the lot. I’ve used up my free reads on The Nation and the New York Times, I’m following dozens of US journalists. My need to keep up is voracious.

I question my motives. Is this obsession. Yes. But it is also work for me.

I am understanding at first hand what fascism looks like and how it grows. It’s a crash course in this digital age, and the unresolved hows and whys of European history in the 1930s and 40s are suddenly revealed.

A generation is waking up though we don’t sleep. We’re getting it.

And as I click I see also that resistance is rising. My work is a vigil – like all my other vigils. I am watching. Waiting for justice.

As an artist I do what I can. I march. I make. I write and publish these thoughts.

My laptop and my studio form the sites of my resistance.

Yesterday I made a start with some sketches on improvised boards.

Today I bought 12 canvases for a new installation to be shown in May. I have my work cut out to produce a series which will be called Landscapes of Resistance.

It may not seem much. But it’s all I have.

Diagnosis is not an end point.

January 26, 2017 § 13 Comments

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Photo bu Stu Allsopp 

 

Diagnosis for autism was a surprisingly unequivocal call for my psychologist.

Ever since I’ve been filling in the gaps. As we approach February I’m shocked to find I’m almost a year old (diagnostically speaking). March 4th will be my birthday.

The other night I had a powerful dream that I was interviewed on national television about being autistic. To articulate what this means in public was clearly wish fulfilment of a kind. I guess I’m tired of being on the margins where I’m invisible and expected to be a good quiet autistic who continues to resemble the neurotypical person everyone (including me) thought I was.

You see I’m learning something important. I don’t want to be that person – one who has to work against my nature and cultural affinities.

Part of this is speaking up and out about everyday matters and expressing my preferences more assertively. One tactic I’ve developed is to describe my experiences online (as in my dream – a way of being public about this) and also directly to source. I’m no longer afraid of addressing organisations, for example, when autistic perspectives are absent.

Yesterday I took on the embedded assumptions of my profession via my super supportive and friendly artist’s network a-n in a post called, Autistic artist seeks professional development.

I’m just so very tired of the fog around social codes creating barriers to access at every level. Those who grow up disentitled know no other. Pernicious fog it is indeed which comes in the way of any fundamental understanding of a process which constantly denies you. Imagine a lifetime of that and the shift required to break through it.

My job now is to develop clear autistic boundaries – which will also mean deciding to leave certain activities and environments behind me.

I only have a finite set of resources for each day – I plan to use them wisely.

Diagnosis is a springboard. Watch me dive.

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