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?

prepotence

20190210_200601-broomstick

Propped up by a broom.

A huge ‘hidden’ but acute disability of mine is something that many autistics share: executive dysfunction. Teetering at the edge of a cliff, there is that sensation of falling, and yet one is still on firm ground – if just only by a hare’s breath. The feeling of executive dysfunction, of running out of what they call ‘spoons’, being at the very thin and slippery border, that unstable, fine line between (a veneer of) absolute control and complete breakdown, is a queasy, heart-rupturing silent scream. Sometimes, the tasks can be the most rudimentary, things that people just do, as naturally as any spontaneous activity like brushing their teeth or picking their nose. For example, answering multiple WhatsApp messages one after another upon emerging from a three hour meeting, without mixing up the who, how, where, when details of doing and saying. Then again, most people do not have to do all this while trying to quell gurgling, seething, frothing nausea, sometimes even excruciating migraine headaches and sharp stabbing pain in the eyes and inner ear, all from sensory overload. For the autistic person with executive function challenges, dealing with ‘simple’ chores can often turn into a battle with large roaring monsters, and staying on top of things becomes a colossal full-body, underwater wrestling match with an invisible Leviathan. For me, this is especially overpowering if ‘things’ involve many different human beings who are interacting in ways that seem to my brain to be alien, diverse, fragmented and scattered. The more human interaction is in the pot, the more cruelly exacting the grand performance becomes. Making mistakes is an inevitable and frightening feature in this unmerry-go-round. The ringing of the phone or the pinging of message notifications have become Pavlov bells of agitation and vexation for me. I have a horrible white-hot searing fear of sending messages to the wrong people, or not remembering certain details when people ask questions outside the ‘compartments’ in my mind that I’ve created for them. A person messaging me directly, taking a conversation outside a group chat but asking me questions that (in my mind) belongs to the group chat, can quickly send my brainwaves into wriggling, jiggling, wildly gyrating spams. I panic – why I do not know because it is not logical to panic – and of course I end up replying with either some garbled nonsense, or wrong information, simply because my mind has short circuited.

Even the most ‘expert’ of non-autistic ‘experts in autism’ fail to notice the subtle nuances of executive dysfunction and mental-sensorial overload as it happens in real time. In fact, I have yet to meet a non-autistic ‘expert in autism’ who can actually ‘expertly’ communicate with the autistic me. It is usually I who have to make all the necessary overtures – performing the unnatural as naturally as possible – in order to get any meaningful communication across. And autistics are supposed to be the ones ‘impaired’ in social interaction and reciprocal empathy?

This is how my autistic executive dysfunction plays out. On the surface, nothing is noticed. Not yet. There I am, deep underwater in the miry depths, engaging in mortal combat with that Brobdingnagian of Executive Dysfunction, but people sauntering by throw nary a glance at the pond, and nobody sees the tiny desperate bubbles bursting silently as they make contact with the aerosphere. All is cleverly concealed, until my spent and bloated corpse makes its way upwards, causing a huge blister on the placid surface. Then comes the shock and even derision. The accusations too.

People can be ‘aware’ that autism means a difference in neurological function. People can even be ‘aware’ of the terms “sensory overload” or “executive dysfunction” etc. But people have little or no idea how to identify the actual unpacking of all their ‘awareness’ in real time, especially if the autistic person is labelled by the non-autistic world as “high functioning” (not rocket science to figure out why I detest functioning labels, is it?). All this Autism Awareness with its fanciful labels is therefore as useful to me – an actual autistic person – as Blahblahblahdittydoodada. And this, while mildly comical, is not at all funny.

I’ve said this before and I’ll say it again. I am autistic. I love what I love with intense, all-consuming passion. And I am great at doing what I am great at doing – even rather brilliant. But I find the simple activity of keeping track of WhatsApp messages so difficult that I have developed a phobia for the sound of a message notification.

Prepotence in uncomfortable co-existence with decrepitude.

Autistic Thriving @TEDx Pickering

 

“Autistic Thriving” – Dawn-joy Leong & Lucy Like-a-Charm. (Captions available on Youtube – please turn on cc option.)

Apologies for not posting this earlier.

“Just what you being made ‘aware’ of? And where are the Actually Autistic voices in this grand cacophony of opinions and interpretations?”

monachopsis

This slideshow requires JavaScript.

Wriggling… awkward shifting, shuffling… navigating frothy nausea… think, dank fog…

How to craft Clement Space inside a constantly assaultive alienation? Minuscule foci. Small things. Split-second moments. Carpe diem! Each tiny aperture is a precious molecule.

Lucy.

Home-cooked nosh.

Friendship.

Music.

Art.

Goodness.

Kindness.

Droplets of mercy and grace notes of consideration, respect and gentleness. These all are Clement Spaces, in the midst of monachopsis.

heart

100T0831-lucy

It’s Valentine’s Day again. Social media is of course flooded with all kinds of related memes, posts, comments and messages. Too much of it is sappy, and just irrelevant to this Autistic Bunny. But the circus is unavoidable, unless one lives in a hole under a rock (not a bad thing, really, apart from the lack of modern sanitation). So… here are my own thoughts for the day… Continue reading

Merry Theory of My Mind

Theory of Mind is a theory, or is it? Dancing around alien fires. Whose Theory and whose Mind?

While it is not true that autistic people lack empathy due to their inability to decipher other people’s mindscapes, I myself admit to being stumped, over and over again, by other people’s thoughts, motives, and actions.

Take, for example, this somewhat questionable penchant for offering help, mixed with an innate inability to make quick enough assessment of character and/or predict potential disaster. Not a good combination by far. Continue reading

just sayin’

IMG_6807w

Agedashi Tofu and Speaking Through the Body by Lucy Like-a-Charm

This morning’s rambling spinning thought processing (involuntary) brain exercise is about words. Ironically, I have to use more words to express my despair of wordedness.

As an Autistic person, as well as a researcher and practitioner in the field, and inevitable advocate, certain words people use to refer to Autism affect me greatly.

Autistic. Not Person-with-Autism. Our neurology is not a handbag we carry with us, or a handy gadget to wield as and when our fancies strike. The vast majority of autistic persons now prefer to use identity-first language, and it is the choice of official Autistic advocacy, yet, the neuronormative world is steadfastly refusing to respect this. Why? Because they think they know better. Words are little missiles containing perception and attitudes. When a person insists on delivering words that hurt, even when repeatedly told to refrain or

Using Autism as a derogatory slur is becoming more and more rampant too, for example, “That’s so autistic!”. And lately, celebrities who have been caught for heinous deeds have been wielding the deficits-focused pathological descriptions of Autism to excuse their vile behaviours.

Meandering onwards from the above mental rumblings, onto more about Words. Words. Words everywhere. Continue reading

hello?

artwork-oil-self-portrait-1

Self Portrait circa 2007 by Dawn-joy Leong

It’s Autistics Speaking Day. I didn’t know there even was such a thing, until I saw my Facebook feed flooded with it, by various Autism advocacy groups and pages that I’ve subscribed to.

Righto. So. Speaking of speaking. I posted this long ramble the other day, about my struggle with a certain person regarding respecting my preferred mode of communication, “gaseous exudations.” While it does seem on the surface as if nothing but an angry rant, and perhaps some of you NT folk may be even slightly (or more than slightly? who knows?) offended by the blunt-speak, it’s actually a very serious issue, and a deeply painful yet far too common feature of Autistic life. Continue reading

gaseous exudations

artwork-princessfishsnake.jpg

Respectful social communication 101: In this day and age of technological advancement, there are multiple ways to communicate. If a person (with or without disability) tells you their preferred mode of social communication, please respect it, that is, if you wish to communicate with the person. Insisting on your own way and disregarding that person’s repeated requests is nothing but utter contempt and disrespect. Simple.

Communication is a complex effort. However, respect can be a really simple thing.

Sadly, there are people who just cannot connect in a straight-forward way, with mutual regard, across respectful space. I’ve come across many such folk along my more than half a century of traversing the hazardous human social-scape.  Continue reading