A very ‘neurotypical deficit’.

April 5, 2017 § 27 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.

 

 

Did you just call me badass? Autism and identity – a list in progress.

March 17, 2017 § 13 Comments

Photo on 02-03-2017 at 15.35 #2I’m grabbing at thin air. My words plucked from a cloud in which a soup of experiences swill.

It’s true of all my writing that until start to pin my words to the page it’s as good as alphabet soup. Such is the autistic mind (in my case).

Contentious terminology was the subject of my last piece called When only autism will do, for which my favourite comment was a thank you for my badassery! This pleased me more than I can say.

So I’m back again at the coalface – or the cola face (as I just typed before correcting myself). Oh how I would like to be at the cola face right now – with my face in a cola. But I digress.

What I’m grappling with is self-definition but it’s all a bit drifty and hazy (the shifting sands of autism, to switch the metaphor).

But anyway – here I go (and the usual rule applies that I speak for myself).

I’m at an early stage of a late-life diagnosis which probably makes a quite a difference in terms of perspective. If I fall down in what I’m trying to say, I hope my kind readers will help pick me up, rather than throw rotting fruit. Which is kind of where I’m going with this.

So.

Yesterday I bought chips from the chip shop round the corner from my studios. Kaz, the charming chip shop owner (and as it happens extremely talented photographer) was feeling it. It being the weight of world events. He sprinkled some wisdom along with the salt and vinegar. I’m  getting old, he said (we’re roughly the same age). I’ve been mistaken all my life – and I’m praying for us to save ourselves from ourselves (referring again to global matters). I nodded, and left with a warm feeling (emanating from the chips probably) and the final golden nugget; the only thing that truly matters and can save us is love.

And swoosh! Into the sunlit street I bounced, past traffic and trees heavy with pink blossom, clutching the warm package of potato love!

I assume Kaz means self-love is important too. I hope so because I reckon it is.

But it is love in a wider sense (this is old fashioned I know) which I’m finding so missing lately. It’s been replaced by the kind of static you get from a nylon nightie pulled roughly over your head.  Shocking and hateful – or rather hate filled human expressions are what we find reflected in so many media outlets that there are days when you don’t know where to look. Not enough love it seems.

Amidst all this static I find myself with a daunting task – staying afloat and making sense of it all as a newbie autistic. I’d really like to find some clarity about who I am post diagnosis (haha! even my diagnosis of  Asperger Syndrome is contentious).

So I’m making a list I can hold onto, and if it helps anyone else in my situation I’m more than happy to share.

  1. I identify as autistic rather than Asperger’s.
  2.  Question: can I be seen, heard, understood and respected as an autistic person by others?
  3. Insight: 2 seems tricky especially as I don’t fully understand me myself yet.
  4.  Identity appears to shift in varying and wider contexts than my own four walls.
  5. The necessity of passing seems to affect 4.
  6. Neurodivergent (ND) as a term has both advantages and disadvantages.
  7. I’ve decided I like the bluntness of the word autistic better. I like the clarity and ‘shock’ value it brings. I vehemently dislike aspie and autie.
  8. I can be badass.
  9. BUT please –  if I forget my manners give me a nudge!
  10. Note to self. A bag of chips is only ever two blocks away.
  11. Further note to self. Try not to drown in world events.
  12. Because even numbers feel right.

 

 

When only autism will do.

March 10, 2017 § 25 Comments

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Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing. 

This post is about access and exclusion. 

It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.

And if you say thank you very much for all your kindness  but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.

This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody  – unless you fancy a nice slap down that is.

Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.

Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).

What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.

Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?

It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.

SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.

This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.

So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.

This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.

I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.

I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.

I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?

My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.

My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.

And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.

Autistic resilience: talking up competence.

February 25, 2017 § 18 Comments

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(Work in progress on the theme of resilience, © Sonia Bouè 2017)

This week has been rocky. I want to talk about anxiety.

Anxieties collide sometimes don’t they? Stuff can accumulate and escalate. World events, a health glitch, a seriously upset neurotypical (NT) friend.

(For the sake of clarity. I should stress here that my friend was not upset with me but rather shared their distress with me).

For an autistic person this can rapidly begin to feel ‘disproportionately’ dark.

What I mean is that for autistics the confluence of events within a short time frame is often what proves disorientating, and I’m trying to analyse the cause. I think that probably some of our anxieties are related to what I think of as imperfect information in the moment. I find this a useful phrase when applied to autistic styles of perception in a neurologically  biased  world. It’s the difference between playing poker or chess – in the former the cards are concealed during play and in the latter the whole state of play is visible throughout. In an NT world we’re playing poker.

I’ve added ‘in the moment’ to my sentence signalling the potential to disentangle events in time.  We are not incapable and we are not helpless – with enough space (and/or support) to do so we can process life’s social and emotional  vicissitudes in our own ways.

Autistics process sensory data and social interaction in a multiplicity of different ways from the majority neuro-normative population. This (logically) creates a very different bank of information from which to draw inference and make decisions for autistics. The world hooks up differently around another set of priorities.

But its even more complicated for us than just this – as this majority population is (of course) made up of individuals. Result? A mountain of permutations of ‘missing’ data for autistics to deal with in ‘real time’.

A literal mountain, which I’m going to call Mount Blank. Yes.

And it really is a BLANK until processing kicks in. This can feel like a dense fog laced with school girl dread. But I find that it’s often possible to simply push the feeling away and move on. We can be resilient like that. Perhaps we underestimate just how hard we’re working everyday to keep afloat in a world which does not support our divergent neurologies – and it is this effort which exhausts us.

But back to Mount Blank. Standing at the bottom can make you feel terribly small (echoes of my school days again). Perhaps this is why a series of unfortunate events within a short space of time have the potential to crush the soul – you are a child again. As the mountain of imperfect information grows it can feel as though you’re shrinking before it.

World events overshadow all out lives at present, but I think that for autistics it’s often the ‘micro’ incidents which stack up without us realising their impact.

And the causes of our confusion are not sensory or perceptual alone, they also lie in never knowing if people are saying what they mean – rather than just being polite, trotting out platitudes or worse. These habits of neurotypical obsfucation add to the scale of Mount Blank. Worse still (I might add) is being versed in this culture as an autistic. Oh the tangles! As you venture your polite falsies (as I’ll call them) and tie yourself in lying little knots.

And because no-one quite tells social ‘truths’, when things go wrong or just feel wrong (in the moment) there’s a  tendency to self-blame. Which is especially debilitating. I think this is the point at which self-compassion must intervene. Imperfect information flows from the majority game of choice and not the individual. Withdrawing from play (taking time for processing) and/or researching* the other player’s hand (many ways to do this including talking things over with an autistic and/or NT friend) are strategies  I would consider next time I hit Mount Blank.

But unpicking and thus identifying this pattern* has got to be one hell of a route to resisting it’s effects. Resilience is often knowledge plus practice.

The road to resilience is all about talking up competence – and this begins with me.

*autistic strengths

Autism: sensory challenge, overload and functionality at work.

February 9, 2017 § 3 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.

Autism does not reside in a medical report.

December 12, 2016 § 8 Comments

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Uncertain Weather System in Place (detail) © Sonia Boué 2016

@ Sonia Boué 2016

Angry voices snarl my Twitter timeline.

As usual it is one particular blog post and one particular individual causing the ruckus. Then others catch the bait, and on it goes.

Currently the official vs self diagnosis argument rages – triggering a daggers drawn stand off. It’s genuinely upsetting and frustrating for my fellow autistics. Horrible and unjust for self diagnosed people to be targeted and excluded by an ‘official’ autistic person. I’m staggered really that anyone would do this.

Of course respectful places exist where it is clearly recognised that self diagnosis can often be the only way for people to identify as autistic when medical model options are inaccessible. Official diagnosis in this sense is a privilege, especially as it can cost a LOT of money. I support self diagnosis, and as a formerly self diagnosed person I see it as a necessary arrival and/or staging post. Reaching self diagnosis for many is a prolonged and complex process. Whether official medical diagnosis follows can be a genuine matter of luck and/or finance.

I respect and understand people who don’t trust the medical system to validate their experience as autistics. For women especially, a failure in diagnosis can be devastating. We fall under the radar too often. While ignorance persists this remains a danger.

In whichever order and by whatever means we gain self knowledge and identify as autistic there is one clear fact. Autism is a life long neurological variation on the genome present from birth. In this sense (with the proviso that there are as many expressions of autism as people) we are all the same.

But I want to understand what makes one person reject a cohort of autistics (while admitting that self-diagnosed people can be autistic) as not the same.

Many will be familiar with the arguments – yes, the worry about fake autistics does feature in a big way.  To be honest I ran out of steam and the words dissolved two thirds of the way through. The author was not able to hold my attention fully after a certain point. Sorry about that – I did try.

You will always get fakers and trolls. Self-diagnosis is not to blame for this and this ‘benefits cheats’ argument is frankly as thin as the hairs on my head. A tiny minority of people may abuse the opportunity to self-diagnose, but guess what? You can fake an ‘official’ diagnosis too.

I don’t believe that fake autistics are dominating the conversation or that neurotypicals are queuing up to become “special snowflakes” – how dismissive and hurtful to the self-diagnosed individuals who have made it to adulthood to look back on a whole life spent in complete bewilderment. The author has encountered views they don’t agree with among autistic people, and that’s called diversity.

I also submit that late diagnosed and self diagnosed autistics understand very well the following concerns (though we may not have lived them directly)

“We need to talk about how the employment rate for autistic people is devastatingly low.
We need to talk about how the law still arbitrary restricts the freedom of autistic adults.
We need to talk about how it is still legal for some employers, such as the Armed Forces, to discriminate against those with formal diagnoses.”

Some people like to stir controversy and we should think probably think carefully about giving them the attention they crave.

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Autism does not reside in a medical report  – and this is the point.

I get that the author of these words grew up in very different circumstances to my own. That is obvious from a simple biographical comparison. I was never at risk of institutionalisation or knew my difference it’s true, and on this point I hear them. But I was as autistic then as I am now. And last time I checked this was not a competition – and why would it be. In addition second guessing other people’s childhoods is futile and disrespectful.

There are many ways to raise this question of difference within difference, and I truly wish they had chosen a more constructive one rather than baiting already beleaguered souls.  But we know that territorial squabbles are rarely kind and often bloody.

They also tend to be a bit of a dead end. Over and out.

The casual cymbal and the traffic cop #autism

December 8, 2016 § 14 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.

The other day I imagined the difficulty managing information flow (of all kinds including sensory) and coordinating responses in autism as the want of a traffic cop at an  intersection during rush hour.

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

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