out of whack

IMG_1420

Fluffy

After three full-on gruelling days, APAC19 (Asia Pacific Autism Conference 2019) is over. It was an amazing and even sometimes exhilarating event – a first of its kind in Singapore where actual autistic people permeated all but the very top mesosphere at an autism event. 1,800 people gathered in the massive Resorts World Convention Centre all with the common goal of learning more about Autism and how autistic persons and those around us can best thrive.

I wrote a mini summary here, and uploaded some of my own photos, so go check it out.

Now to face the aftermath of all that dizzy positivity: my sensory system has been thrown completely off kilter, of course. Which autistic person doesn’t understand what I mean? Not one, I’d wager, though the specifics may be different for each individual.

For me, I’ve developed an insatiable appetite – it’s my mouth, my tastebuds and olfactory nerves all going chomp-chomp-chomp without care for or connection with the rest of my body. The brain is craving sensory comfort so much that it doesn’t want to acknowledge the other sensations like, well, a too-full stomach. I’m having trouble with my own physical signalling, as if I shall float away if I didn’t firmly anchor myself somewhere and somehow.

Oh, and the insomnia is deafening. I can hear everything whirring in randomly orchestrated high-pitched pretentious screech-fest in my headspace. Tones and microtones meandering, crossing, greeting, clashing, intertwining and looping.

IMG_1127

And those bizarre lights at the convention centre, they’re gyrating and creating a bit of drama. My eyes have not stopped hurting since – I can feeling the muscles tensely squeezing around the eye socket – and my vision is blurry.

I need Clement Space. In bed now, listening to Lucy’s breath, softly undulating, her warmth emanating so reassuringly.

I must attempt to sleep now. Good night, Every Bunny!

100T0057-lucy

angel

100T0051-lucy

angel (June 2019)

Listening
Whirring fridge
A-flat
Human laughter in the wind
Slightly off C
Sudden dull thuds
Quickened heartbeat
A flash of white
Searing fear
Sirens scream
Inside the cavity
Of acid green
What is that smell?
Nebulous, acrid
Footsteps pounding
Headspace resounds
Broken B
Chairs dragged
Across cheap tile
Shattered F-sharp
Quivering interstice
And then amidst the chaos
Here in my bed
An angel’s breath
Comforts me

(9 June 2014)

aggression oppression

 

20190401

I am an artist, musician and a researcher. I am not an ‘Avenger’ or any comic book hero. I am no sword-wielding warrior. I am merely a reluctant Advocate – I dream of a world wherein there is no more need for disability advocacy because disability will just be accepted and embraced as part of natural human diversity – but I know advocacy is crucial in the here and now, else we the disabled will never have equity and autonomy. Without advocacy, I would not be able to practice my art, music and research, because of my known disability. Continue reading

concatenate

A massively overloading day. I made it through the first part because of Lucy. We attended the second Opening of I-Opener at Playeum this morning. It was heartening to see so many people at the event, and I was so glad that everyone seemed enthusiastic and supportive, and our work as a whole was very well received – but my senses were screaming with silent horror after the first half hour, and the shrieking crescendo broke the fortissimo barrier by the second hour.

When Peter, our friendly RydePet regular favourite ride came to pick us up at the end of the two hours, I was already in a near catatonic state, my headspace ringing with the imprint of dissonant cacophony. Strangely enough, I was still able to prattle away in the car with Peter and my friend Jacky, who was riding with us to the next event of the day. Was I already going into a state of disconnect?

I left Lucy at home, and Jacky and I went to attend the Peter and the Wolf show. Two of our friends, Cavan and Timothy, were in it, and Timothy’s mum so very kindly bought us tickets. But I couldn’t bring Lucy to this one. Ironic, because the venue is assistance dog friendly – Lucy has been there several times – but the show’s organiser’s “were not prepared” for us.

It was a fun show, the cast were great, and I even managed to smile for the cameraman after the show (he took a photo of Cavan, Timothy and me). But I had to scuttle away quickly after that, because my head felt as if it would explode and shatter into a million fragments.

Home at last with my Lucy, I crashed into a much needed two hour sleep, and woke up only when Lucy decided it was time for her dinner.

The headache is still doing its pounding thing, the two panadol insufficient to quell it. Time for an early dive into bed.

For people like me, some days, just making it through is a laudable achievement, something to be proud of. And today was a pleasant day. Really. I love my friends, so many came in a much appreciated show of support – in fact, I was so overloaded that I didn’t even see one of my friends, who brought her husband and son to the Opening. I didn’t know she was there at all, the sea of faces had melted into a bizarre Salvadore Dali landscape with an aggressive soundscape to accompany. Later, without Lucy, it was even harder to focus and I had to consciously and repeatedly pull myself away from the abyss of dissociation – the out of body sensation that overtakes when I am in overload. It was a day of positive social interactional vibes, but my senses just aren’t designed for this kind of activity. Especially not when I cannot have Lucy with me.

IMG_0423-lucy-zz

Good Night, Every Bunny!

Lucy is now fast asleep in bed next to me. The little fragments of my Being are slowly shifting, shuffling and scuttling back towards each other, slowly joining and melding, slowly mending, inside this Clement Space of ours – just Lucy and me. The best soundscape in the world for shattered nerves? The rhythmic rise and fall of my Angel’s breath.

Good night, Every Bunny! And thank you my dear friends for helping me get through an actually really truly lovely day.

five-four

100T9680-w

Today was yet another brain melt day, I have been having a great deal of these lately – triggered no doubt by the combined crush of lack of intellectual and creative stimulation, too much stress from trying too hard at everything apart from engaging in real creative work (which includes research, not just art, which I love), overload of weariness from advocacy (often this means preaching to the un-convertible), and the ironic lack of empathic understanding from even the most well-meaning non-autistic ‘autism experts’, who, despite their book knowledge and claims of having worked with autistic people for x number of years, still have little to no idea how to actually communicate with Autistic people according to our intrinsic styles. It is always us Autistics who have to bend, bow, wriggle, wrangle and perform grand calisthenics in order to reach out to the normative. It’s no walk in the park, trying to make ourselves understood – ironically, the ‘autism experts’ seem sometimes the least capable of comprehending us (not always, I am glad for the wonderful allies I have met and with whom I work). Blame it on the rigid (oops, aren’t we Auties the ones who are supposed to be inflexible?) stubborn adherence to the Medical Model, perhaps?

Anyway… Mental exhaustion, emotional depletion, and sensory-physical devastation can have crushing effects on a hyper sensory Autistic Bunny. Too debilitated to even cook for myself and too out of linguistic spoons to instruct our helper to cook for me, I decided to order in my lunch via FoodPanda delivery. As with almost all Asian (especially Chinese) food, it tasted better than it looked. (With the exception of Japanese cuisine, which looks every bit as delicious as it tastes!)

Then, while going through some work-related emails (as the food gurgled it mushy way down my digestive tract), I was reminded to look again at Damian Milton’s video on “Double Empathy”.

I love Damian’s work, he has done a great deal of work in the area of empathy, and I also like his dry, deadpan humour. I won’t add further to this excellent talk, but just to insert in here that somehow, my brain zipped and zapped a connection with this other thing, seemingly unrelated but yet it is, because Damian did mention music as a communication… Here we are…

Why “Take Five” by Dave Brubeck? I seriously do not have a ready explanation, although I am sure there is one if I dug deep enough. For now, my brain isn’t working in the conventional way, so I’ll just say that’s just the way my brain works. Seemingly bizarre connectivities. But sometimes exquisite!

No prizes for guessing what rhythmic time signature my brain worm is gyrating to now.

(un)broken

broken pieces

This morning, my precious Octopus mug handle was broken by the cleaning lady. It was a gift from a dear friend, bought from a little shop in Covent Garden in London, and it’s traveled with me across many cities and different continents through its 30+ years of existence in my care. Intact. Today, I felt a part of me had fragmented together with the demise of this innocuous object. I can hear the neuronormative puffing and huffing, “Come on, it’s just a mug handle, get over it!”

Well, I am Autistic. I used to become intensely disturbed and distressed when someone so much as moved my pencils in my pencil holder. Neuronormative ‘expert’ observers of Autism label this “meaningless” or “obsessive” adherence to order, because we autistics are supposed to be craving some kind of malevolent “control” over our out-of-control environment.

The “out-of-control” part is accurate, but the “control” part is rubbish. What the normative ‘experts’ – professionals making good money out of us in the autism domain, and normative-minded parents spending a lot of money on non-autistic devised autism ‘interventions’ – do not know, and/or are not ready yet to want to know despite us autistics telling and telling them (though this is changing slowly) is that many hyper sensory Autistics like myself inhabit a realm that is far more exquisite than the noisome pestilence-filled domain called “normality”. We are connected to the vibrant matter around us in ways that normative minds may never be able to grasp, even some Autistics who’ve been so successfully brainwashed and ‘corrected’ by various behavioural mental programmes into becoming pseudo normatives, because they have sadly lost touch with this beautiful part of their embodied existence.

You see, this “just a mug handle” is part of the finely balanced, natural elemental ecology that I call my intimate abode. It’s not that kind of bizarre Svengali-like “control” that the normative minded pronounce us to have. Perhaps, because normativity can only understand this limited concept? Instead, it is a harmonious, gentle, generous, rich and grace-filled connection one small detail with another, molecule by molecule, whisper to whisper, heartbeat to heartbeat, that embraces us. If one component is out of place, or crushed by violent normative callousness, then the entire living ecology cries out in pain. Imagine, if your finger were crushed or cut off, will not the rest of your body scream and thrash? Why, then, are we Autistics punished for our intimate connections just because the normative have no such inkling of Being? (I’ve explained this in my PhD dissertation, under “elemental empathy” – please visit my official website if you want to read and learn more.)

“Get over it!” – sure, I shall, in time. But your finger… you know, that part of you?… if I break it, how soon will you “get over it”?

Executive function failure: I was unable to even insert money properly into my wallet after that incident. My heartbeat is going at a racing pace, the over-exerted organ pounding against my ribcage as if it is trying to escape. I am sitting next to Lucy, inhaling her comforting aura – which includes aroma, fragrance, physical and spiritual radiation – trying to calm down.

Today was supposed to be my rest day, I allocated time to do peaceful, restful, rejuvenating tasks that are for me, by me and help me to recover from having to comply and perform to the excruciating demands of neuronormativity in the last few weeks and months. I have to try and make the most of it now. With a part of me, and extension of my Being, violently shattered.

Wouldn’t you guard your fingers and toes if you’re working and living in an assaultive environment? That’s just what us Autistics are trying hard to do. Yet, you intervene with your behavioural therapies to force us into a catatonic state of numbness and disconnect with our most beautiful modalities. Dear Normative / Allistic people, please don’t punish us Autistics for your own lack of sensitivity and connectivity.

Who is empathy impaired now?

reflets dans l’eau

100T7403-xmaseve

stille nacht

2018 was unexpectedly obstreperous and brutal. A vast, swirling, seething, somewhat inebriated ominous monstrosity ingurgitating every attempt at hopeful rejuvenation, each ounce of vim and vigour slowly inhaled into its impenetrable mucilaginous dark cavern, leaving limp, brittle skeletal remains crackling in the sizzling heat of unrepentant tyranny, unrecognisable construal of once fierce passionate and spirited determination.

Advocacy has extracted its ponderous price. What irony, for one who never set out to be an advocate anyway. It is too arduous and violent for gossamer wings, too loud for tender ears, too rough for quivering fingertips.

Yet, where there is life, there remains slithers of flickering hope. And my life is not yet over, albeit saved time and time again by a Canine Angel whose existence beside me surpasses all reason, all logical apologia.

20181225_115930-lucymini-long

whispering hope

My minuscule whisper to the grand cosmic gyration for 2019? Time to reflect, rest, and retreat gracefully into Clement Space: art-making, embracing pulchritude, tasting each nuanced fluttering of time moving rhythmically through wordless interstices.

only an expert

The Autism Grand Circus Industry has grown out of proportion. Tiresome and tiring, depending on where one happens to be standing. Everyone claims expertise – from the Autism Mom who has written a few books based on their observation of their own child/children and now goes around giving talks and dishing out sage advice about autism, to the learned non-autistic professional with many degrees in Autism, everyone is an expert dealing with the Autism Problem. Everyone, that is, except the Actual Autistic person. Autistic people are mysteriously ignored and sidelined in the Autism industry. A phenomenon so strange that it is almost eerie.

20181119_194406-mushroom-long

Can magic mushrooms cure autism?

Talking about bone-chilling, I recently found this in a webpage of a business specialising in “treating” autism. The alarm bells rang loudly when I saw “Chelation” and “CD Water”. Then I did some research on the various “Dr” people named in this letter, and found them all to be promoting expensive dubious ministrations aimed at “shedding”, “recovering” and “overcoming”. Some of these involve injecting the autistic child with unregulated substances, others focus on dietary interventions, all couched in complex-sounding pseudoscientific terminology. Is your blood curdling yet?

ARN screenshot

An autistic friend of mine has been valiantly trying to educate parents about snake oil sales pitches, dodgy programmes and harmful approaches to fixing the autism problem. Very brave person indeed, because he was variously derided and chided, treated like a foolish child, instead of someone worthy of respect. I often wonder, do these same parents even have the mindfulness to ponder this: If you treat autistic adults this way now, what kind of world are you preparing for your autistic child to grow up into? Is this how you’d want others to treat your autistic child when they become autistic adults? Or are you gambling all you’ve got on the great “cure” casino floor, thinking it’s going to be fine, your child will be rid of autism by the time they become adults, and hence they will not have to face this kind of demeaning and crushing ableism?

I honestly find it difficult to fathom what goes on in these parents’ minds – there, I admit it, I lack Neuronormative Theory of Mind! It is excruciatingly difficult to be thusly illogical and unthinking. Yet, I am told I should empathise a little more, “slow down” and allow others to catch up. My doctor says it’s good for my heart – you know, that strange squishy squashy rhythmically driven organ responsible for pushing blood around the body? Yes, that one.

Perhaps 2019 will be a year of “slowing down”, but in a different way: that is, finding Clement Space inside gentle things, wondrous connections and conversations with the material universe. I love my autistic world, it is a pulchritudinous eco-system, but the crass, grating vibrations of the normative realm is at odds with autistic tranquility. Too many experts. So little space for Beauty.

mommy dearest

20181004_063822-w

Eat this, darling, it’s good for your Autism!

Why are so many autistic adults upset about and with “Autism Moms”? Why do so many autistic adults (myself included) seem to speak so ‘harshly’ against Autism Moms? And why are so many autistic adults broken, devastated, crushed, traumatised and yes, suicidal?

It is a collective hurt, a cultural pain and trauma suffered by the Autistic Community, that is embedded deeply inside our Being. No other group of disabled persons in recent years has been subjected to such forceful and sometimes even well orchestrated multi-dimensional assault, exploitation, misrepresentation, patronising condescension and stigma as Autistics.  Everyone is an expert on Autism, except the Actually Autistic. Continue reading

describing torment

20181101_131143-lucymini-long

clement juxtapositions

Dogs are amazing creatures. Their ability to adjust, accommodate and survive never ceases to intrigue me. Too often, despite trauma and abuse, dogs nevertheless seem able to rise to pulchritudinous grace, something which I long to be able to learn and adapt to my own fragile humanity.

Here is something I wrote this day three years ago, describing in words – though most inadequate – what sensory overload is like in the midst of trying to live and survive inside normative-dictated frameworks and prescriptions. There is sadly very little ‘clement space’ for the autistic entity inside this overwhelming overstimulating normative world – well, almost none at all.


 

13 November 2015 at 18:38 Continue reading