autistic opinion

Sunday morning. Not much sleep. Too many reasons to list. I am grateful always for Lucy by my side. Difficulty with sleeping is another one of the many struggles that most autistic people face. Again, it’s probably less to do with Autism per se, and more about the state of high anxiety that we seem to be perpetually in. Hyper vigilance inextricably blended with acquired trauma (just staying alive can be a traumatic journey for many an autistic person) would be my own guess.

I am listening to Joan Baez today, because of an ear worm that began to wriggle in my headspace as I got out of bed today. This song. So beautifully sung by Joan Baez. “The Water is Wide”. Continue reading

empathy

Autistic people do not lack empathy any more or less than non-autistic people. Humans in general just lack empathy for anyone or anything that isn’t operating within their specific realm of ‘knowingness’. Most autistics, however, do tend to try much harder to empathise with the non-autistic than vice versa, hence, some may claim that we posses more empathy. Yet, from my personal experience, humanity is just a churning, swirling, heaving, frothing, chaotic mess.

Lucy, however, grasps my Beingness in such an elegant, encompassing, empathic way that I wonder how we humans can even claim to be ‘higher-order’ sentient entities?

She knows when I am tired, she even tells me when I am on the brink of crashing, and with such gentleness, such poise, that if I am not mindful, I fail to notice her indications. Lucy is never gruff, rough, loud or crass. She never encroaches upon my personal space in the way humans do that is suffocating and pushy – autistic or not. Even when she wants something, she is always polite, and because she expresses herself so harmoniously with my state of mind at the moment, she usually gets what she wants (unless it is harmful, of course).

Humans, humans, humans! Teaching empathy? Talking about understanding? We are at best clumsy though well intentioned, and at worst we just plough our way through and claim victory. Continue reading

leaving & returning

Breakfast is my first meal of the day. I am a Foodie, that means food and all its accompanying sensory input, is important to me. If breakfast is somehow not ‘right’ to my senses, I am thrown off kilter for the entire day. This morning, while tucking in to my Nutella on Toast breakfast, I felt a sense of excited tranquility seeping in and slowly filling me – for those who understand what I call “elemental empathy” (i.e. the way some autistics relate and communicate with the material world around us), this was one of those connected full-body moments. A sense of relief followed the first thrillingly refreshing wave.

I am leaving the fierce, aggressive and thankless (for me) arena of focused autism advocacy here in Singapore. I jumped into the fray with a great deal of trepidation, and it was just as I expected it to be every step of the way. It did not disappoint my anxious predictions, but I am glad I did it. With the help of strong allies, the heavy door into the mainstream autism platform was held open just enough for other hopeful and enthusiastic autistic adults to step through. Whether they are ‘ready’ or not for this, it is not my place to critique or assess. It is now all up to those who wish to step into the limelight of advocacy.

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cognate

It has been said about me – usually behind my back because many neurotypicals are so typically avoidant of speaking bold truth without the simple facts being shrouded in murky sticky slime or stirred in with bits and bobs from yesterday’s dinner – that I am far too “high functioning” to speak about the “severely autistic” or “low functioning”. After all, I have a PhD, right? And neurotypicals like to ‘compliment’ me by saying, “But you don’t look autistic!” and variations on the same (probably unintended) ableist theme, “I couldn’t tell you are autistic, you behave so normal!” or “You have excellent eye contact, you dress well, and your social repartee is so smooth!” or “How I wish my son/daughter were just half as normal / capable / smart / successful as you!” etc etc blah…

Without launching into the specifics of what autism is and isn’t, without boring my readers with a deluge of scientific studies and explanations, without providing a long list of challenges that all autistic persons share, here is something in a nutshell that I wish to say to those people:

When you say “you are not like my child” or “you are too normal to understand the ‘severely autistic'”, you are making assumptions based on your non-autistic viewpoint. You are looking only at the external features that you can observe (but yet still fail to really understand). If you say this, then you do not know autism at all, you have no idea what you are overly confident to presume.

Anyway…

Who is better placed to understand those who are deemed “low functioning” or “like your child” anyway? A non-autistic person looking on and basing their assessments on whatever is written in a book by yet another non-autistic person and exterior elements that they are unable to decode, or an actual autistic person who is better able to decode and unpack the behaviours drawing upon their intrinsic autistic modality (mostly hidden from you or unknown to your ignorance) to understand another autistic person (without even the use of words)?

Think about this. If you will. If you can.

five-four

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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.

fools & horses

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Little Saraband – Lucy Like-a-Charm

So much fluttering the past couple of days around social media, on my feed and that of others. Someone really quite brilliant once confided in me, that he feels an overwhelming sense of loneliness because few people are able to properly understand what he is conveying to them. It is a lonesome space to be, when one is extremely intelligent and intellectual, I suppose? I won’t know. I’m really not all that clever, but painfully few people fully grasp my communications too. Maybe my friend and I are at opposite extremes? I don’t feel lonely, though, because I have Lucy. No need for words between us, though being human I tend to use words a lot. She knows what she knows, and what she knows is enough for me.

My friend said of me, that I do not suffer fools gladly, but perhaps he is wrong this time about why. I merely despair because humanity seems hell bent on folly, while riding rigid-backed upon nervous horses on stilts.

Too many words flooding my brain lately. Maybe I am the greater fool after all. I’m happy inside wordlessness, and it’s once more time to repair frayed nerves, so I shall take my leave from here until my human ego and folly returns yet again with more words to scatter.

Fools. Here’s a song I wrote and recorded in 2000. This version is the instrumental, without words, but today, just the music is enough conveyance.

https://soundcloud.com/dawn-joy-leong/fools-instrumental-version

empathy overload

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I read this article about dogs and expressions of empathy, and my thoughts immediately linked to the empathy overload that many autistics report experiencing – feeling so much of the other person’s pain that one is frozen or implodes and unable to react in a way that displays gestures of comforting or soothing to the other person in distress. This gives rise to the misunderstanding by normative brains as the autistic person lacking empathy. (No outward display of huggy-kissy-aw-you-poor-baby stuff that non-autistics seem to expect and perceive as having empathy.)

This passage jumped out at me:

“During the task, the researchers measured the dogs’ stress levels. Sanford said dogs who were able to push through the door to “rescue” their owners showed less stress, meaning they were upset by the crying, but not too upset to take action. As for the dogs who didn’t push open the door, it wasn’t because they didn’t care — it seemed they cared too much. Those dogs showed the most stress and were too troubled by the crying to do anything, Sanford said.”

‘Taking on the mantle of pain’ so to speak. Lucy seems to do this when I have had meltdowns – she freezes and just stares at me – and somehow, because of this, I manage to self-soothe enough to get out of my meltdown state. I am brought back into the moment by her presence and driven by my empathy for her empathy to resolve my pain reaction, simply because I do not want to see her suffer from my suffering. Does that make sense? Dogs can teach us so much about our humanity.

trap

A little sparrow is trapped inside a corner in a large human-purposed shopping mall. It flies around looking for a way out, but to no avail.

My senses connect with the bird in its distress and anxiety, I feel a tingling in my scalp, shortness of breath and tightness in muscles around ribcage. Nausea creeps in before I know it. The taste of my orange juice at the back of my throat has turned into a vile, sickly yet sharp dry metallic-sour taste, like acid burning the sensitive mucosa around my throat. Dryness is setting in and I must remind myself to swallow and breathe deeply.

The poor bird. My mind is working out ways to capture the bird and take it outside. But I do not have a shawl or towel with me, and it is flying too frantically anyway.

The room is tossing and turning in concentric circles around me, and the soundscape of human voices and piped pseudo-jazz music is slowly distorting in my brain into a muffled, slow-motion eerie kaleidoscope of dark purple colours and rancid vomitus.

And the hapless bird continues to fly, round and round, across, up and down.

The humans inhabiting the space, dotted around the room at small square tables, are all too engrossed in either their mobile phones or social chatter. Not a single person averse their gaze to look at the sparrow, not a single expression of concern. They share no empathic resonance with this sorry, desperate creature.

Soon, it will become too exhausted and maybe even crushed by the impact of smashing against windows, and will just fall to the ground and die. A slow, anxious, fear-filled death.

Just a sparrow? Not to me.

A small entity exuding overwhelming pain, confusion and wretchedly forlorn fear. Screaming fear, even. Fluttering. Flapping. Smashing. Falling. Rising. Da capo. Until there is strength no more. Not a twitter. No time and mental space to cry out. Just white hot futile determination. And then, there is silence and life is spent.

My heart feels squeezed tightly like a wrinkled old orange.

Heavy with sadness.

Overwhelmed by elemental empathy.

——

(Shop staff have become aware of the sparrow. Let’s hope something can be done to help the poor creature.)

fail

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The dark despair of failure. Those depths of acrid, rancid, dissonant putridity. Purple – thick, viscid, slimy, clammy, choking and Stygian – swirling manic whirlpool inside corporeal core.

That feeling that one has failed a precious Parallel Embodied child. Closest companion. Most faithful entity who walks alongside without questioning.

Each and every decision affects this beautiful being – such cogent reverberations – in ways no human mind will ever fully grasp. Yet, just sensing the very peripheral waves, catching those soft crying top notes or unheard vibrating bass notes, is enough to thrust the human soul into the vortex of forlorn, hapless gloom. That is, if the human possesses just a sliver of empathic resonance for Other, and a tiny beam of light shining onto Self. Many, sadly, do not. Yet… Some humans really do. Some humans truly try.

What would one give to understand in full the abundance that thrives within the Canine Angel’s inner world?

What may this human proffer in exchange for this harmonic-rhythmic enlightenment  beneath the mantle of verisimilitude?

Would the knowledge and the weight of its pulchritude and agony annihilate the tenuous human fragility?

No words. No answers. The silence deafens, as the senses listen intently, skimming the surface of myriad textures, smells, tastes, vibrations, images, sounds… Ebbing, flowing, undulating…

Autism Acceptance?

IMG_5762Lucy@AutismMeetUp

Autism MeetUp 2016, UNSW Art & Design

Community service announcement:

Dear organisations jumping on the Autism Bandwagon. You really need to do better than “everyone else” if you wish to win the trust and confidence of Actually Autistic people. That is IF you truly wish to be inclusive (as you so claim) and learn about intrinsic autistic modalities and paradigms, in order to properly support autistic people in respectful ways. This is the ‘homework’ you need to do BEFORE asking autistic people to do freebie work for your ’cause’. Show us that you are worthy of our efforts. Any other is at best mere tokenism, and at worst exploitation. Add to that, spreading harmful misinformation.

#actuallyautistic #autismacceptance #nothingaboutuswithoutus

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