What’s the fuss about animals and autism?

It’s been more than a month since I wrote my response to the terribly biased and poorly researched article in Spectrum on autistic researchers. Since then, I’ve not stopped ‘going on’ about the subject because I feel a gross injustice has been done – in fact it is a multidimensional injustice. But I’ve been told to stop, even by autistic people, because I am passionate about a topic that most people do not understand and/or abuse, a subject that has been shamelessly mistreated and exploited, resulting in a great deal of hurt and damage to autistic people, as well as to autistic researchers who are actually researching this connection. Yes, I am talking about Animals and Autism. I already know one autistic researcher who has been deeply wounded by this article. The root of the problem is ignorance. This topic has been hijacked by shameless ignoramus, and the majority of those who are offended in the process are reacting also out of ignorance, and the proverbial baby gets thrown out with the dirty bath water. It is an important ‘baby’, and one that I firmly believe will shed even more stunning brilliance to autism research, if only it were more understood and pursued further.

I am no expert myself. I wish I could be. If I had time and finances on my side, I would embark on another PhD in this area. Sadly (for me), all I do have now is this little tiny glimpse. Nevertheless, I will not stop saying what I am compelled to say. I will continue to encourage young autistic researchers who are interested to pursue their dreams in this field. If you have seen something so amazingly exquisite, something that has changed you from the very core, then you will not cease to speak about it. Someday, the world may see what we see. For now, it is a lonely thing to be a minority within a minority. The passage below is taken from my PhD dissertation, and can be found in the chapter Space of Mind.

meds & bets

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Executive Function Support: Breakfast, Lunch & Dinner

Growing up, I always had doctors come to the house – we called them ‘Uncle’ because they were dad’s close friends. Nowadays, each time I go to see my favourite GP, I miss those days when doctors did house visits. It’s a literal nightmare at the clinic, teeming with germy humans (well, ok, why else would they be there, right?), many have no idea how to keep their juices to themselves. There was one lady today coughing and hacking and making all the noises appropriate for whatever she was suffering from. Horrifying, even without a global pandemic hovering above, but in the context of COVID19, I shuddered. Thank goodness our government has made wearing masks mandatory, with strict penalties for non-compliance. One occasion where I am glad compliance was enforced without exceptions, even though I am not keen on compliance much, this is imperative. Throughout my adult life – as soon as the ‘Uncle’ doctors retired and no longer came to our house with their little black leather bag of mysterious potions and sharp needles – I have dreaded going to the GP’s clinic. I cringe and agonise about what horrible stuff I could catch there, even if I didn’t present with that particular kind of ‘sick’ at the beginning. It is almost without exception a chaotic mess of humans in various states of un-wellness with human droplets and other infection carrying fluids being happily and sometimes lavishly shared, like a twisted, eerie unholy communion.

COVID19: masks & masking

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  From The Eccentric Elephant

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  Butterfly & Bling

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  Black sequinned fabric & rose appliqué

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  The RickMask

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  More bling, more kitties

I love masks. I’ve loved them since a very young age. I used to make all kinds of masks for myself, so I could pretend to be this or that super hero or anti-hero character. I remember enlisting the help of my grandfather, who was living with us at the time, to make them. He also helped me create swords and various kinds of weaponry out of cardboard so I could perform the swashbuckling stories that were slushing and sloshing around in my head. I didn’t know this was yet another facet of my Autism, of course, but on hindsight, it was indeed a flashing light, the fascination for masks, masking, performing personas and experimenting with myriad characterisations, because of the innate sense that my own Being was somehow not desirable to the world around me, and so I learned to externalise the internalisations and contemplations of personhood very early in life.

OK, I know masks are not everyone’s ‘thing’. In fact, many – autistic and non-autistic alike – abhor wearing them. Yes, it is extremely uncomfortable to have something covering half my face, especially when I also have to wear spectacles, and it is hot and humid here in Singapore. My Autistic hypersenses are actually substantially distressed. I absolutely sympathise and empathise with people who detest wearing masks. Many people also develop skin issues, like pimples and other itchy-scratchy reactions, myself included. My glasses fog up too. But you see, now that I am no longer interested in developing personas, I still embrace the mandatory mask wearing, but for a different reason in a different context altogether: it is because I am immunocompromised.

So, this time around, it probably isn’t my autism that is embracing the mask, it is my medical disability, and over fifty years of suffering – I kid you not, I don’t use that word loosely – that has impacted the way I am now reacting towards COVID19 and all it horrors.The virus itself is already terrifying, the more I read about it (and I have been voraciously devouring the alarming and depressing details being spewed across online media – medical journals, news articles, COVID19 updates etc) the more apprehensive I become, but it is actually the humans spreading it around willy nilly that is causing 90% of my anxiety. There is no way to control human behaviour, and ‘normal’ people are the worst people to trust in a pandemic. They are the first to flout any kind of safety regulations, and sad to say, the first to grumble and complain about the slightest inconvenience or disruption to their ‘normal’ filthy habits.

nefelibata

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Cloud walker.

Dreamer.

Othered.

Living on the peripherals, meandering in and out… falling up and rising down…

Damned human-centric consciousness… burnt out, imploding, imploring.

The price to pay is small, this detachment, I am not lonely, not even alone – because the universe holds such infinity in its richly textured, fragrant and abundantly threaded tapestry. Always connected, always embraced.

But this human shell… this navel-gazing, glazed, muffled, bleary-eyed sightedness.

What tyranny.

What irony.

Such exquisite pain. Excruciating beauty. Always just out of reach.

Incarcerated by my humanity.

Lowest of life forms – barbaric viciousness, swirling toxicity.

Our blood runs thick with evil.

Yet, she waits for me.

Patiently.

Unspoken wisdom of ancient sentience.

What manner of creature is this?

Such grandeur enwrapped gently in humility.

Angel in my bed.

Cloud walkers. Together.

COVID19: family blessings

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  Happy Birthday, Nula!

Birthday dinner for Nula, mum’s helper from Myanmar, who has been part of our family for five years now.

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We celebrated Nula’s birthday recently. Just us five in the family. We had takeaway from our favourite Thai restaurant, Diandin Leluk. Eating at home is so much better anyway, comfy and relaxed, no sensory overwhelm. Nula is from a state in the far north of Myanmar. She’s been my mum’s helper and part of our family for five years now.

On the subject of ‘family’… It’s been a rough familial ride, but I am happy at last, with my ‘real’ family now, and so glad to be spending time getting to know mum in a new way, unobstructed by other people’s hand-me-down bitterness influencing my gullible socially-clueless Autistic mind and all the gaslighting that contributed to a rocky one for mum and me in the past. We’ve had our huge fights, we struggled in the beginning when I first returned home, while the evil elements tried their best to stir the already murky waters with added poison, but we’ve both emerged stronger and our vision is clear now. Mum and I have arrived at our special Clement Space – truthfulness and honesty is our way forward. Indeed, truth sets free. Only then can we learn love. Lockdown – being cooped up with mum 24 x 7 for months – has been surprisingly pleasant too. Well done, gals!

art of eating

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  Cantonese rice rolls in sweet sauce – cheongfun – simple breakfast fare

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  Nula’s newest experiment – prawn & scallop vermicelli in soup

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  Nula’s experiment – what is it?

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  Chicken & fried rice

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  Pork, chestnuts & assorted delicious things in soy sauce

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  Nula’s fried soy rice with Chinese sausage tastes better than it looks

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  Chinese wonton dumpling

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  Leftovers from the day before, with my chilli & garlic sauce concoction

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  Nula’s experiment – beef, choysum & fried rice

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  Plain congee with soy pork & cabbage

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  Nula’s experiment – red capsicum & pork

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  Don’t ask me what this is, I eat whatever Nula serves up

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  tau suan – mung bean dessert

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  Seafood vermicelli takeaway – from Ah Boon across the road

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  More seafood vermicelli from Ah Boon

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  Radish cake and chicken in soy sauce

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  More radish cake

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  Nula’s idea of a Big Breakfast

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  Plain congee with bitter gourd & salted egg – a Chinese peasant’s meal

Eating is a fine art. I don’t mean gastronomy or whatever kinds of skillsets needed to be a gourmet or food critique. I mean, the art of eating when your autoimmune condition is the type that brings forth deep, large and excruciating aphthous ulcers in every nook and cranny of your mouth and throat.

Of course, it depends on whether you are a foodie or not. Fortunately for my survival, I’ve been an avid foodie since childhood, which was when this condition decided to rear its ugly head and I’ve actually never had a real, natural remission since. Fifty years of pain is a wearily long time, and believe me, one never does “get used to it”. Have autistic hypersensitivity doesn’t help the pain at all, it amplifies its effects to other parts of the body in a palpable and engulfing way. But there is a flip side, as life usually is multidimensional in all its glory. My ‘seeking senses’ are also heightened, which makes me a determined, driven and almost indefatigable foodie. Almost. There have been times when I surrendered to the pain and just didn’t have the strength to foodie on.

voicing the silent roaring

I’ve been doing a sort of big-ish battle with my autoimmune condition in the past three days. The complete works in quite a bit of horrific glory – if you have any kind of vasculitis you’d know what I’m talking about, but if you don’t never mind. This post is not about my wonderful physical pain. Ironically, it’s about my ‘voice’ – in a multidimensional way – just as I am riddled with so many aphthous ulcers that I am running a fever and unable to eat or speak, let alone sing.

I posted up this song of mine today on my Facebook. About my journey to Beingness. Of all my songs recorded during that period (1999-2000), this one always brings me to tears, and the narrative grows and grows every single day. I want it only to end when I am no more on earth. Being Me is a lifelong process. And the reason I am in tears each time is because I am overwhelmed with gratitude towards all those – in an almost mystical and magical serendipitous way – who have contributed to my Becoming.

COVID19: sonata of comfort

What shall I play today?

Conundrum. On the one hand, I am loving this stay-home directive so very much, there aren’t enough hours in the day for me, in fact. Working from home is peaceful, and I am much more productive.

But here’s the rub. The painful dichotomy. My anxiety levels are rising and bouncing off the walls and roof. Why? Simply this: so many of my friends around the world – autistic ones too – are just not coping well with this enforced isolation. No, I am not talking about those who are grumbling incessantly about their deprivation of haircuts, spas, manicures, pedicures, massages or ‘bubble tea’. I am talking about those people with mental health struggles who are in various states of panic, despair, incapacitating depression, feeling suicidal and self-harming. I feel my friends’ pain, but I am helpless to alleviate or ameliorate. I am at a loss for words, I don’t know what to say and am afraid to say anything for fear of sounding too glib or worse still, in case my own personal joy becomes offensive to them.

COVID19: zoom-boom

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.

COVID19: contactless

contactless delivery

I love ‘contactless’ deliveries. No need to open the door. Just say a loud, “Thank you!”, look through the peephole, make sure parcel’s been placed at door, delivery guy goes off and voila! I hate to hold the grubby slimy sticky pens or tablets or whatnot and have to grit my teeth into a fake smile to hide my sensory horror while signing for my parcel. Usually also holding my breath, because… human body… The entire ‘contactless’ concept is most pleasing to me.

Why can’t we do this all the time? Maybe this is how I’ll take delivery from now on. At last, I don’t need to feel horrible and condemned for simply being me. Please just leave it at the door, thank you!