#AutisticMotherhood Misrepresented

April 27, 2018 § 8 Comments

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Work in Progress in the Studio © Sonia Boué 2018

 

I’m breaking a rule by writing about a play I haven’t read or seen, called The Big Things, by Mike Heath, which has recently stirred unease among autistic people, autistic mothers in particular.  The Big Things, is ostensibly about autistic motherhood but from what I hear this subject is never truly examined in the play.

Yes okay, I’m going on hearsay (from autistic women who’ve read the script and one who’s seen the play) but this is more than good enough for me. I feel I’ve given both playwright and production company (Kibo) more than enough of my time in the past few days.

Autistic motherhood, in contrast, is a subject I know intimately from the inside, unlike Mike Heath.

Mike Heath, and Kibo Productions have stumbled into a PR nightmare in taking on this subject (it seems) without sufficient knowledge or research. The real shocker for me is that this play should be Shortlisted for the BBC Alfred Bradley Bursary Award 2016.  Culturally speaking, no-one in the room sees autistic women. Let alone do they see us as creatives who might want to (and do) write our own plays about ourselves.

But I think this play slipped through the net, as it were, because it’s not really about autistic motherhood (how could it be?) No – this play is about how frustrating a fictional neurotypical man finds it to have a relationship with an autism stereotype. She’s a cardboard cut-out, dude. No wonder….

I should explain that as an autistic mother my greatest fear about this play is that it could gain success.  And that the portrayal of “Grace” (ironically named as she has no grace?) could develop the legs of a Rainman or a Christopher (Curious Incident in the Nightime) and go walk about. Such figures stick and we are landed with them, unable to shake them off for decades. I literally shudder at this thought.

I wouldn’t suggest that a neurotypical man should never write about autistic motherhood, for what is fiction if not the work of imagination?

But I admit I’m not keen on the notion of neurotypical men writing about autistic women at this point in our cultural emergence (for reasons of historic and systemic ableism and patriarchy). But if they must, at the very least they should do the homework (which means consulting actually autistic women who are mothers, and hiring us as sensitivity editors).

If they must, they should do right by us and avoid writing harmful stereotypes. But this sounds like a horrible play, which does exactly the opposite.

At one point in the heated Twitter debate things went a bit dark. Were some of us trying to force their creative to do something against his will, Kibo Tweeted, somewhat petulantly I thought. Er, NO.

Up until this point it had seemed they would do their utmost to put this living howler right. They’d seemed hapless and merely ignorant (although they had tweeted inaccurately that the National Autistic Society had read the script for them). No-one was calling out malicious intention (that I could see) or being in any way coercive – not at all. It’s my experience that autistic people rarely feel they have power in such situations – this is the whole point.

Somehow as a group we had overstepped the mark for Kibo, and trust was on the wane on both sides. This irony shouldn’t be lost.

A group conversation online can go in many directions, and meanings misunderstood. But we’re rightfully angry about The Big Things.

I wish Mike Heath had not had the sense of entitlement to write this play. He was, of course, free to write it – but no one said autistic mothers had to like it, or quieten down while others mop up the mess.

Autistics are a minority group who don’t have cultural representation (although we’re edging forward) – the point is that we don’t yet have a voice. The voice we’re presently conferred by others thus becomes crucial – each time. Each time someone who has a platform writes about us and gets it wrong we’re pushed back.

This is vital for autistic women who are mothers too. We have been even more overlooked as a demographic.  We’ve been either unimagined (as not possible) or maligned (refrigerator mothers – autistic causation seeping from our frozen nipples to our unloved infants!)

I felt the shadow of Bruno Bettelheim in the descriptions I read of Grace by the autistic women who act as my first hand witnesses. Is it any wonder that this conversation is so uncomfortable for us all? It should be.

If you want to support the voices of autistic mothers, please read this marvellous open letter  led by Katherine May. You can ask to be a signatory in support, and you don’t have to be an autistic mother to do so.

Thank you so much for reading this post.

 

 

 

 

 

 

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Organising the butterfly brain. #Autism #ExecutiveFunction #CreativePractice

November 29, 2017 § 6 Comments

 

 

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Work by Sonia Boué – 2015 Exilio exhibition. Photo by Chris Evans

Rare is the artist who can focus on their creative practice alone. My own professional life has become so varied that I myself struggle to balance the work that pays with my studio practice. Creative project development, managing the projects I create, my consultancy work, and mentoring, are all incredibly engrossing, rewarding and (I have to say it) time consuming.

It’s been a struggle to keep my own creative practice going as I’ve pushed forward all the other aspects of being a socially engaged artist-activist-facilitator, since my autism diagnosis in 2016.

I can’t complain (because I love it) but I do now need to ‘get organised’ – a term which ordinarily is an anathema to my brain.

Butterfly brains like mine don’t ‘organise’ in the conventional sense. No. Brains like mine like to organise through flow. And yet, I recognise that my in some ways super-efficient tendency to tackle work demands on an immediate – it’s in front of my nose so I’ll do it now – basis is not always going to get me into the studio early enough, or necessarily help me strategise  longer term (beyond this being my strategy, as it were).

In fact, the truth is that unless I ignore my inbox entirely, or deactivate Twitter, I may not leave the house before midmorning some days. Some urgency will grab my attention – I can get sucked down a rabbit hole of questionable use (though I maintain this is how I research, and that my best finds come about when I’m browsing), or throw myself into a fresh piece of consultancy that means I’m still in PJs when the post arrives (these days around 2pm). And then there are the inevitable meetings, meetings and more meetings – from which I must decompress.

OK, that quick-fire attention to new work leads is a plus, and can really pay off, as nothing impresses potential clients more than speed of attention to their needs – which in my case is genuine, I really do care. We autistics have to play to our strengths in the workplace after all. But could I prioritise my studio time in other ways?

Obviously social media can be a big ‘drain’ on one’s time – except for the fact that it can also act as a quite wonderful addition to the autistic freelancer’s workspace. Water cooler chat, professional networking, and a gymnasium for the ‘overactive’ mind – it’s all pretty positive when you frame it like this. I often tell the artists I mentor that some of my best opportunities have been created online, by hanging out, dawdling a while and putting great content out there as a calling card.

None of this has been done strategically by the by – it’s just happened.

Hmm.

Equally, I’ve had some major fallow periods and this has been pretty amazing too. There have been times when ‘realtime’ (how I hate the term for it’s hierarchical connotations) has taken over (as in days of old) and there simply hasn’t been time for Twitter, Instagram, and the like. It’s been edifying in many ways, involved a lot of masking (not so good) and made me intensely productive in the studio. AHA!

You see this is it. The autistic mind in my experience finds regulation tricky, and how the butterfly brain loves to flit from email to blog post at will! I speak for myself, of course, but so so often it’s an all or nothing thing for me. I’m either ONLINE or I’m OFF. Time spent away makes the social media platforms seem glitchy and a bit like Teflon – my brain forgets how to connect. People move on, the platform ‘upgrades’ and it’s all shot. You have to work at it to get back to where you were as a presence in people’s online minds. Don’t get me started on how bad the non-chronological timeline can be for autistics. We need our networks dammit! Sometimes this is even life-support.

So the prospect of creating some kind of structure for my work beyond the reactive is intriguing – how will I regulate the switches involved and will I really be ‘more productive’? My suspicion is that I will be differently productive, my worry is that I will lose out on flow. The ultimate goal is to manage it all, hold onto to all the plates I’m juggling without going into overload.

It’s my deep suspicion that much of this will require fine calibration, and that like taking vitamins (which I’m also trying out) I will be prone to forgetfulness, and lose track of the various jars which will gather dust and simply litter up the place. New habits and routines can be hard to sustain – like the over eager resolution, destined to fizzle out before Christmas.

Wish me luck. I really, really don’t want my creative work to slide away. So that’s a major motivation. A studio practice is all about turning up, and I’m looking forward to getting stuck in. After all – I should really practice what I preach to my dear mentees. Keep it going, find space for your work, carve out time!

 

Chris Packham – a watermark moment. #autism #actuallyautistic

October 23, 2017 § 11 Comments

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Chris Packham, 1987, The Really Wild Show  (source Daily Mirror). 

It’s been a little while since I blogged in this space. Life has been busy for this autistic.

I’ve learned a great deal lately in my professional life, mainly about the absolute importance of  working from core knowledge. Congruence is the buzz word right now – and from it so very many good things can and do flow.

This is all very timely and segues nicely into other areas of my life. Viewing the recent Chris Packham documentary Asperger’s and Me  has set the seal on a growing trend. I know it wasn’t a perfect programme on autism per se (I even wonder what such a thing would look like as there are so many ways of being autistic) but it was perfect for Chris.

Many will point out that this was a white male perspective (as ever) and that there was an unhelpful division between Asperger’s and autism (a false division some would argue – myself included). Horrifying sequences were filmed in the US where autism was likened to cancer with resultant ABA ‘behavioural chemotherapy’ administered. I’m still reeling. We witnessed the controversial TMS intervention being applied to a young man – a subject I myself have written passionately against in a previous blog post.

Yet Chris being perfectly himself is what we’d all like – and in this sense it felt nothing short of a miracle. We saw (perhaps for the first time?) an autistic man owning the screen quite openly – after decades of masking his autism for viewers he dropped it revealing a far more interesting persona (even than the one so many of us have admired for so long).

Yes, Chris is an even more compelling personality as an autistic – so swallow that world. Absorb the truth that our unmasking can be your enriching. And not as a beguiling enchantment (as autism sometimes is portrayed) but as a reality – Chris didn’t smooth over the areas of intense struggle which led him to consider suicide seriously on three occasions.

Okay, this programme suffers on some levels – unhelpful ideas and information slip through the net at times, but Chris holds the narrative.  His status and skill as a presenter has conferred this power (one so rarely held or shown by an autistic), and his openness can be a gift to us all.

There have been three tangible occasions already in which the programme has helped me (I mean specifics – the overall effect can’t really be quantified). Three conversations which have been eased by Chris.

I’ve been greeted by a new level of understanding and given considerations not previously offered. I have been able to say how hard it is for me to socialise with people who don’t know I’m autistic – how much I sometimes dread it, how much masking can be involved, and how I won’t sleep afterwards because my sensory system can’t quickly shift from hyper alert masking mode to relaxation. The later a party the longer it takes me to unwind, and the more impact this has on subsequent functioning for days to come.

Finally my family understand, I can talk openly with some of my neighbours, and I can tell a dear old ‘neglected’ friend why I never stayed in touch. This is down to Chris – if they’ve watched the programme a new foundation has been laid.

I’m not saying this will work everywhere or every time. I’ll still have to mask and I’ll still be met with blank faces. But I can now manage certain relationships with more realistic expectations on the other side. This feels like another watermark moment. So thank you Chris, and amen to more of that.

 

 

 

The wrong autism!

September 26, 2017 § 8 Comments

 

 

 

I have been thinking about the constant demands to adapt to a neuro-normative culture and be the autistics others would like us to be.

There’s usually a snag.

Being autistic – being diagnosed late in life – is a process (of) unbecoming.

I can’t do what I can’t do, and I can’t be what I can’t be.

Not ‘neurotypical’ with quirks –

I really am autistic.

I’m just not the autistic you want me to be.

Ah yes, and so it is.

Autism is as real as concrete or snow (except it doesn’t melt).

But you need us to fit in to your ways.

Got it. Ah yes. I got it.

I caught it, and caught on.

I’m suppose to be this, that and the other.  All things, in fact.

All things except the one thing I am.

This autism is not convenient.

Not at all.

With regrets and adieus.

This is the wrong autism!

Just the wrong kind.

Okay?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Perfect storm. #autism

July 20, 2017 § 20 Comments

 

The context for my poem Perfect storm is the research for my Arts Council Funded project – The Museum for Object Research. It isn’t about any one person or conversation, but more about my growing understanding of the ways in which I am disabled – despite being a competent human – by ingrained assumption and the double empathy bind.

This learning is born of multiple conversations within lived experience.

Predominant neurotypes (PNT) find it difficult to relate to and engage with autistic experience, and vice versa.

It’s becoming clearer to me – the more I dig in – that each and every autistic ‘deficit’, contained within both medical models and cultural stereotypes, can indeed be applied to PNT when viewed from an autistic perspective.

A mirror world exists in which PNT are disabled, and the only difference between us is that of privilege – via cultural dominance/numbers.

This kind of thinking is real. It’s foundation is (as I say above) a lived experience, which finds a powerful echo in the social model of disability.

I’m grateful to Jon Adams and Brent White for their wisdom and council in guiding me towards the clear understanding of the human rights issues at the core of my cultural project.

My thoughts about autism are community inclusive but relate only to personal experience.

———————————————————————————————————————————–

Dawn brings the perfect storm.

And skylights catch droplets in rapid succession.

Yet I am deaf to their timpani.

 

Undoing the stitches of my carefully fashioned…

…tailoring…

I have spoken for the first time of my disability.

 

A  pointed conversation.

 

But what of…

…my ‘intelligence.’

Yes! I say (quite shamelessly).

 

I do have one.

And degrees and so forth.

(Despite scoring zero for I.Q.*)

And, what is more,

I  often soar above you.

 

(The aerial view is our prerogative.

Including the ‘voiceless’ and the more visibly NEEDY.

Sharing a something you can’t reach.

Ah yes – a club of sorts.

Seemingly without a fee.)

 

And perhaps this difference.

Well. It’s irrefutably so.

Is. Also. Your. Disability.

 

The places you can’t go.

 

I am disabled.

DIS-ABLED.

But by what?

And by whom?

 

And.

What (I ask myself).

Does.

My.

Disability.

Mean.

For.

You.

 

Well…

Perhaps.

And. Most certainly.

I can read it.

In the symbiosis of our smiles.

 

And we can act like kittens.

Playing with string.

Until it’s time.

To bring the dead bird in.

 

A trophy to trying.

A cup to greet the day.

 

* My cognitive profile is not measurable as an IQ score.

For I am human #autism

June 26, 2017 § 85 Comments

 

Photo on 20-06-2017 at 16.01 #2For I am human.  (A radical statement to some.) 

And I am capable of every human emotion.

Even as I wake some days I am surprised to find this as truth. For I am othered in the collective consciousness which envelops us all.

I have for all of my years, until the last, swallowed my othering whole, so that I did not know myself as myself at all.

Confronted with myself – I found myself a stranger all the more.

But as time eeks out its knowingness I no longer falter, for I find that I am myself (of course I am) and always was that self buried under a false persona.

Stepping out from under it was like tearing off my shadow.

A false persona melded onto a true heart? Yes – I think so. Yes.

A not unsmall quake of tectonic plates.

Now settling. Becoming.

All humans wear a social mask.

All humans tire of one another.

All humans seek solitude.

My humanness is not other – it is a parallelogram of your humanness.

A mirror in which to see yourself (at times).

A mirror which defines our also separations (like a walk or a swim).

Don’t be shocked or surprised.

(And I say to parents.

My existence doesn’t threaten your child, or replace their value.)

I am both mother and babe.

And there is space for all of us.

For we are human.

 

 

 

 

A very ‘neurotypical deficit’.

April 5, 2017 § 28 Comments

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This assemblage piece is a work in progress which I’m developing for a performance.

This post modestly observes that the deficit model for autistic people is neurologically biased. 

For me one of the clearest differences between myself and the neuro-majority is one of pace. In comparison my processing speed can appear snail like – but is this bad?

Generally, I like significantly less volume of input in my life than my NT contemporaries. And I’ve noticed that I like to go deep into the kind of ‘information bank’ I prefer.

In this state experience and thought tends to the profound and considered. Like so many autistics I know I go full on in and bask in the kind of immersion that generates my favourite state, that of flow.

Once in flow I turn what I’m handling this way and that. I see the object of my interest from many angles as I strive to understand it in perfect detail.

What I notice most is the NT habit of fast crawling (ant-like) in a purposeful direction over the surface of things (not saying that profundity is lacking but that the focus appears to be speed and reach). So there is a general hurry to move across the surface and to go wide extending outwards. New places and new connections are made endlessly it seems. They want more and more of this – so that the web of interactions unfolds exponentially, growing larger each day.

I’m talking about tendency with variation of course – there will be NT who like quiet and slow too.

But I hear NT reminding themselves quite often to slow down, go back to base and value the small things and the people who ‘really matter’. In a corner of perception NT know that they can tend to overdo it.

These are two vastly differing vantage points. And that is all they are.

I think this is a perhaps one very good reason why NT can seem to to ignore autistics and don’t quite register our presence.

I write the above in the context of World Autism Awareness Day 2017 – which being deep in a flow state – I missed!

But it’s been an interesting week.

As April rages on unnoticed in my immediate environs I haven’t seen much autism awareness on the streets of Oxford. Not one person I know has mentioned autism.

Zero.

In a way I’m relieved. I’m tired of all the misinformation.

Autism to me is a language and a culture. It’s my identity. But I am yet to fully realise that, or rather what that means in my life.

As the internet groans with blogs and videos, articles and debates this month, I turn to practical matters. I have to live in a neurotypical (NT) world. I have survived all these years. But I want an equal footing in this crazy scrambled world.

While NT life has powered on this week there’s been a quiet revolution in my autistic soul.

I’ve gone from feeling weighed down with the enormity of my task to locate myself as an autistic woman in a world that doesn’t suit my neuro-type, to feeling freed. Its as though I’ve absorbed another level of my difference and come into a clearing.

I know what I want because I have experienced what I want.

Miraculously, l’ve connected with a community of autistic women. This is a new kind of sisterhood.

And suddenly I have the information I need to understand the distinction between friendship and the rubbing along of convenient relationships that can so often masquerade as friendship. Those fickle, brittle ties that are quickly made and broken as convenience moves on elsewhere.

As I analyse this truth I begin to see that the trouble in truly grasping this before has lain in the mismatch of pace and intention. It is perhaps because NT are almost constantly engaged in a subtle form of mapping and networking that autistics can so often become confused about relationship.

NT like this practice enormously but (as an aside) it can cause no end of confusion in terms of purpose and getting things done.

Perhaps I’ve never seen it this clearly because the foil of autistic sisterhood was missing. Isolation from your group is clearly a bad thing from an informational point of view.

Without this knowledge of my group I have been less discerning, but I can at last see things more clearly as I discover more what kind of social shape my neuro-type fits.

I can suddenly see with 20/20 vision that in relationships of convenience (no matter how friendly they seem!) people don’t necessarily have my interests at heart even if I’ve been generous and giving.

So I don’t need to give all those breaks and benefits I tend to rush in with (autistic people can be unusually kind). I’m too helpful by nature and that is frankly exhausting.

Returning to the differences in processing with which I began my piece, it seems to me that as NT move speedily onwards to the next person and the next opportunity they may fail to notice many examples of autistic kindness.

What an unfortunate processing deficit that would turn out to be.

 

 

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