COVID19: zoom-boom

Zoom

My friend Maxfield Sparrow, autistic advocate, activist, writer, poet, musician and all time amazing person, wrote this article: “Zoom Fatigue: A Taste of the Autistic Experience“.

Here are some really excellent points from Max Sparrow. All true. For me, apart from already struggling with the things Max has pointed out, Zoom / Skype meetings are still the lesser of two terrible evils called “meetings”. In-person meetings mean, for me, sensory overload and risk of infection each and every time. Hypersensitivity + immunocompromised = every activity is a careful choice. Each time I attend a work-related meeting or event, or even a social gathering, I have serious choices to make. Either I choose to go by public transport and end up at the meeting bedraggled, sweaty, fearful, anxious and already completely drained, or I spend precious money on hire car and get there with some part of my brain and physical function still intact. Then, during the meeting or social gathering, I endure sensory overload from the built environment, plus sometimes distracting gossip and irrelevant chatter, and I am still struggling to grasp the essentials of the conversations. In-person meetings also tend to go on for lengths of time that to me seem like ‘forever’, because non-autistics love congregating. Not only am I being sensorially bombarded and physically depleted in the most wasteful way (i.e. spending more than is needed, with no gainful returns), my anxiety is compounded in stretto crescendo because I have no idea when this nightmare is going to end. The time is up, but people are still waffling and laughing and cracking jokes that I do not find funny in the least but just automatically laugh along with because what else am I to do? Whereas, the horror of Zoom meetings tend to end more quickly and people are mostly on-point. I surmise that this is because non-autistic people find Zoom meetings dissonant to their natural modus operandi and hence are less inclined to linger? Anyway, for the autistic and those with specific disabilities that put us at disadvantageous positions where functioning is concerned, it’s all about living an exhausting existence because this world system just isn’t built to be the least bit conciliatory towards our modalities. Continue reading

empathy impaired

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I watched a couple of videos circulating around Facebook earlier this evening, horrified and almost unable to breathe: a beautiful white horse was running along a busy road, not far from where I live. People who captured the video were laughing and giggling, “Oh my gawwwd! Why lie-dat?”, (Singlish speak for “why like that”) which made me feel sick to the core, a low out-of-tune bassoon vibrating underneath my diaphragm, while white searing high-pitched screams pierced my headspace as my heart tried to break out of my rib cage.

Screenshot 2020-04-05 Title

And here is the write up on “MustShareNews”. Apart from sloppy writing, it’s another attempt at humour that falls flat in the stinking bog, as far as I am concerned. Oh wow, look, it’s tagged “INSPIRATION” and “HUMOUR” !!!???!!!???!!!??? Continue reading

COVID19:empathy overload

Autistic people can also crumble from despair and depression due to empathy overload. Yes, you read this right.

I’ve been seeing a rise in social media posts about death of loved ones who have been infected, I am sent into a whirl of grief each time, sensing the horror and fear that these people are experiencing, crammed into hospital wards, confused and terrified, not knowing if they live or die, and then eventually slipping into the unknown, dying without loved ones around. I feel the exhaustion and desperation of the medical personnel, many of whom also become infected, and some join the list of fatalities. Each and every narrative is monumental, and yet, they become part of historical statistics as time goes by. The surge of empathic resonance at a time like this is overwhelming, and the fact that I am unable to do anything at all sends me into thunderous silent despair. Yes, silence can be so loud that it hurts.

The people who claimed that Autistics lack empathy have absolutely no empathy at all for the autistic realm. They have no idea what they are talking about. Empathy overload is excruciating. It can shut the entire body and mind down. And nobody else will see it.

 

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.

Continue reading

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

2015-Little-Sarabande

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.