heard & included

The Autism Network of Singapore put up this set of inclusive memes, and they used Identity-First language for this post and also to include this in their future posts after I explained to them that the vast majority of Autistic people around the world are proud of our identities and prefer to refer to ourselves as Autistic / autistic, rather than “with autism”.

It’s great to be heard. It’s wonderful to see that our voices are validated. It’s encouraging to know that an autism organisation want to walk the talk alongside actually Autistic people. It’s progress when we are heard and included in the conversation: About Us With Us.

Thank you, ANS!

meds & bets

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.

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COVID19: family blessings

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!

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non-essential

the way forward

So, here in Singapore, there was some ridiculous poll, with around 70% of 1,000 people rating artists as the top non-essential people and healthcare workers the top essential. Well, I am not even going to get into the grand churning seething arguments being thrown around with theatrical rabid hysteria – artists making a great almighty fuss, and superior sounding others mocking that almighty fuss, and round and round we go in the Grand Human Circus, because nobody seems to even see the hilarious yet sad farce this thing is. This is a reflection, a small sampling, of the mentality and attitude of the general population. Only the tip of a huge iceberg. A huge, festering, rotting one that speaks of our humanity.

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dental adventure

I had a huge surprise today. Nothing prepared me for this. Not even the gentle reassurance of the dentist surgeon during our prior consultation and X-ray session, a few days ago. In the days between, I was vigorously psyching myself up, struggling to quell the rising anxiety, but not succeeding too well. Last night was the worst, horrible anxiety and panic swells, falling in and out of restless sleep. Poor Lucy, she couldn’t sleep well either because I was writhing away next to her all night.

Well, what happened after I settled into the dentist’s chair, stretched out, mouth open, like a hapless animal waiting to be slaughtered?

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bento, sushi & little appoggiatura

One of my typical Autistic traits is that I can eat the same food that I like over and over and over again. They also go on a kind of rotation, according to category. In the last two months of my stay home adventure, the family have been having a lot of Japanese fare. We want to be safe, so we’ve not had much raw sushi lately. I also like to go to the same food places – I am risk averse in that way – so our favourite is the Ichiban Sushi / Boshi / Bento, and Kuriya food market, all part of the large RE&S group. I am a happy Autie Foodie Bunny. And always, always, I never take food for granted, so each photo capture is a gesture of gratitude.

There’s only one thing missing from all my recent amazing foodie-ness: my friend Rick. I wish I could share all this with him, and inundate him with my non-stop waffling too.

art of eating

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. Continue reading

Autistic Identity

The wonderful folks at Reframing Autism recently launched a series of videos by Autistic people sharing their views on a variety of topics. (Check out their Facebook page for more and hit them a Like or Follow while you’re there!) This video is my humble contribution, about my Autistic identity.

A few years ago, during a coffee catch-up with a brain scientist friend, I revealed to him that I had been diagnosed as Autistic. It was both intriguing and saddening to see and hear his reaction. Where previously, he had declare how fascinated he was with my eccentric personality, now, he was somewhat derisive.

“Oh, you can’t be Autistic, you’re not at all like Temple Grandin! You are too fluent in your speech and communication.”

I tried to explain, that I have had plenty of practice, since I began to become aware of my own existence, around the age of 5 or 6, I started to practice in front of the mirror, taking on various personas. The subconscious was already telling me that I was not the same as others, and I had embarked on a meticulous training journey in the art of social camouflage. There were awkward moments – and there still are – but I made it my life’s mission (at the time) to refine my skills so much so that nobody could tell I was performing. It wasn’t difficult to carry off when in the midst of strangers, and even with so-called ‘close’ friends, I was consciously engaging myself in various forms of theatre. I was in my 40s by the time I was formally diagnosed – Asperger’s was the label then, but I am more comfortable with the encompassing ‘Autistic’ identity, not just because Asperger’s is now subsumed into the wider Autism category but also because I do not want to be associated in any way with the small group of ‘Aspie Supremacists’ who deem themselves superior to the rest of autistic people.

My explanation – which has since become a recognised phenomenon called ‘masking’ or ‘social camouflage’ studied seriously by researchers today – fell on un empathic ears. The brain scientist decided he was the expert who knew me better than I did myself. His question saddened me.

“Is this because you want to be Autistic?”

I realised, then, that there will be friends I have to leave behind along this journey towards being Me. And he was one of them.

Again, I’ll leave this song of mine – first recorded in 2000 – here, as a reminder to all, and to me, that Beingness is an endeavour, but we should never be ashamed of the effort and the journey.

“Me”, 2000 – ┬ęDawn-joy Leong

reviving love

 

I wrote and recorded this song 20 years ago, with Leena Salim. Directed, arranged and piano played by brilliant musician, now psychologist, Dr. Chris Fong. All made possible by generous funding from a treasured friend.

When Leena contacted me about reviving this song in her Throwback Thursday series, I was delighted. Here is Leena’s lovely MV with some photos of her, her cat, and Lucy and me. Somehow, we never photographed the both of us in the studio, I think we were having too much fun.

The world is in turmoil in ways and on levels not experienced before in recent times. All the heaving, swirling, churning and seething is too overwhelming for me. I’m no advocate or activist of any kind. I’m that bubble-head person that says I want “World Peace” with a sombre straight face and mean it. I’m also that cynic who has observed humanity for 55 years, and read about human history, and I am in despair, because humans have learned next to nothing despite our thousands of years of practice. I know I have no power to heal the world. So, here is my music and art, because this is an inexorable process and journey for this one insignificant Autistic life form, Me.

Fools, 2000. Music and lyrics by Dawn-joy Leong. Vocals, Leena Salim and Dawn-joy Leong. Director, arranger, pianist, Chris Fong.

“Where are the Fools?” they ask,
Well here I am.
Just another actor in the stage of life.
So, round and round, we go,
In search of truth,
Chasing our dreams,
The rainbow’s end,
Would we ever find?

I believe in Love,
And truth and hope,
And within a dreamer yearns
For love to find
Scarcely daring to admit it to myself,
A fool.
But then you came into my life
And suddenly I have found it in myself
All the courage to love and be a fool for you.

But life goes on, they say,
I guess it’s true,
And I know our paths will soon
Begin to part.
The sunlight in your hair
the pealing bells
Every haunting note
Will always stay deep within my heart.

Why are we so scared to love and give
Never wanting to admit
The loneliness, the pain.
If only the world were kind to us
If we could only be kinder to ourselves
Maybe we would find a way
To be true, to love.

(Hit a Like or Follow on Leena’s Fan Page too, while you’re at it!)

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. Continue reading