December 30, 2016 § Leave a comment
It’s been my first autistic Christmas. Well the first one since my diagnosis (in March).
In the run up I was less than enthusiastic – I’d managed to get pretty run down this year with no time to process events due to an extraordinary heavy workload. Christmas was almost here with no time to prepare. Or so it seemed to a tired brain. Until several days beforehand.
And then it dawned. Christmas wouldn’t be the same this time. We could take all of the pressure out. And we did. Mostly.
I felt joyful.
Decorations went up late and were minimal.
We had no radio blaring carols.
I refused to buy too much (and nothing which wouldn’t be useful), and avoided the sales.
When I popped into town I gave bank notes to an elderly woman sleeping rough instead.
I watched some carefully chosen DVDs but no TV.
I stayed away from Social Media (except for a couple of positive exchanges) and blocked a few random Twitter haters who found their way onto my timeline.
Mainly I stuck to my Bulletproof diet – so my digestion didn’t suffer.
I learnt to make broth over the holidays – the meanest broth, which could probably raise the dead. Ordinarily cooking isn’t really for me but with time on my hands I got my mojo back and rediscovered the soup queen in my soul.
I gave my attention to family, but allowed them to scatter to the four corners of the house.
And I didn’t feel under siege or responsible.
I saw a short 1956 film called The Red Ballon. It’s so beautiful! It speaks to me in a language I understand as autistic. A language of objects and poetry.
It’s taken me so many days to wind down but soon I’m going to need my routine.
December 22, 2016 § 4 Comments
Awareness unfolds. Eight months have passed since my diagnosis of autism, and still the realities of what this means reveal themselves to me bit by bit. Or perhaps that is whole by whole. There is so much to know and this seems at times vast – like a powerful ocean tide around my feet, or whole constellations twinkling above me.
I can’t tell how many such moments there will be, or how deeply they’ll take me to a core of knowing.
It feels infinite and beautiful. Knowledge is secure at such times – perhaps this is a oneness I feel, with the elemental. Having nothing to do with earthly life as lived via human design, by which I mean roads, houses, cars, buses and planes. The realities of the machine, and now digital age/s.
And in reality I am the most machine dependent person. I am a city rat (small city please) and like my amenities close at hand. So I’m not against that. But we have screwed things up. We have, oh we have!
But I’m not about that in this moment. I’m taking a break from all that kind of thinking, and the cycle of terror and hate we’re locked into as a species.
This is about breath, blood and bone. The only thing we truly know is in our bodies. We must trust our bodies.
Autistic people spend their lives being told that their bodies malfunction. They can’t regulate, they can’t coordinate, they cannot process.
What is true is that we can’t do it like the rest of you (you mythical ‘normals’ who are in truth as variegated as we autistics).
So I’m learning to do things my way. Be how my body needs to be. Allow my mind what it needs to function my way – without judgement or interruption.
Oh ‘normal’ world! Can you imagine what it is to be a child, to be in school, and to find nothing but interruption and judgement? And not even knowing. To not know that this is what is happening to you…
Your body learns that it is wrong. Your body learns to contort and try to be right. You learn to approximate to this thing called ‘normal’.
This is the unlearning that has to be done.
I look back and see a small child. I often hid in small spaces. Under tables and behind curtains. I was ‘naughty’ and knew I was bad. Grown ups seemed random and foolish, and school a place of boredom and lies. I noticed the arbitrary, and was not impressed.
But soon I learned to contort. When did I learn to be unimpressed with myself?
This is the unlearning to be done.
December 18, 2016 § Leave a comment
(This is an image from my studio of work in progress on events relating to the Spanish Civil War.)
A hilarious exchange about a mistake on a station platform. A deep conversation about family life.
I get up and down from my keyboard. I stir a broth on the stove and empty dishes hot from the washing machine. A fan whirs but it’s okay, I have my headphones on.
All is quiet.
I gaze at the twinkling lights strung around the room and note how peaceful this is. We are warm, we have eaten well.
That feeling I love comes over me. I remember all those other moments when my kitchen has felt like the engine room of a ship at night on a calm sea. It will take us to our destination, with the quiet and purposeful hum of machinery that works effortlessly well.
I first discovered the engine room when I held my second baby in the night as the dishwasher purred and she settled into the white noise.
Plates will be clean, mouths will be fed, we have shelter.
I move out of my chair again to pause for thought, stack cups in the cupboards and know the freedom to range and write, range and write. This is the autistic way sometimes.
We may need movement to think. The kinesis of my body takes my thought a step on to where it needs to go. But this is me watching me.
I have also observed the world. Click, click, click. I’ve been to so many places in one day. Click and click.
I’ve been to Aleppo. I’ve seen the film about the children who can’t cry. They no longer cry.
Covered in dust and dried blood these infants say nothing. They walk with wide unblinking eyes and are led by the hand by strangers. They observe the adults around them. A mother, clothed in the same matter, cries for her children who are all dead. A youth carries a bundle in his arms as he weeps. His dead baby brother. Without a father he takes his place.
They wait to learn if their mother is dead.
I am watching the intimacies of others – I am in places I shouldn’t be. Click. Click.
I am watching what I’m asked to witness by a news agency. I am watching the end of worlds.
In Aleppo there is no engine room, no string of lights, no broth and no-one is free to range and write.
In Aleppo there is slaughter and more to come.
We watch, we click.
But oh – we move on…
And turn our attention to our peaceful homes.
And we complain.
We complain about the stupid things.
© Sonia Boué 2016
December 12, 2016 § 9 Comments
@ 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.
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.
December 8, 2016 § 14 Comments
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
December 3, 2016 § 5 Comments
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.