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 – ©Dawn-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

taking five

Here’s another nostalgic musical moment. My friend Rick posted this up in his Facebook today, and I was remind of a silly little adventure I had in 1988 or 1989, so long ago I cannot quite remember when. Back then, I was an undergraduate student in the music department at the University of Hong Kong. Well, it was a sensory memory more than anything, really. I attempted to play this piece with a friend who played the clarinet. I cannot describe the mess we made of this piece, but it was incredibly fun and hilarious. We ended up in stitches and as far as I can remember, we headed off to the tuck shop for tea and never tried it again.

Music is hard work. But it is also amazing. I wish I worked harder at it in my younger days, maybe I would’ve been better if I’d pushed myself that little bit more? I’ll never know. But I am thankful I fought for and followed that dream.

Now, I am longing to reach a stage in life where I can stop scrambling for chicken droppings and just relax and play music, make art, write papers, work on my epic autobiography, doodle, paint, sew, crochet jumpers for dogs in shelters… Hey, wait, actually, that’s just doing almost the same things that I am now doing, but without the crushing anxiety of having to scrape the pennies off the floor, or spin dribble trying to tell people how wonderful I am and please could they give me some money to do my art, pretty please? I often envy dad – the autistic polymath who sold his clinic, retired at fifty, and indulged in all his amazing intense pursuits of Autistic Joy thereafter. Still, I should be thankful for little things. I have Lucy Like-a-Charm, oh wait, she is a big thing, not little at all. And I have music. And art. And friends. And a small part of family. I don’t have good health but I still have life. Which is a damned sight better than many others I know. Such Clemency.

Lucy Like-a-Charm: joie de vivre

Ah, such joie de vivre!

COVID19: sonata of comfort

musicscores

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. Continue reading

COVID19: music as panacea

Music, there is something about music that speaks to the un-worded, other-worldly part of our soul. And musicians, well, we are a kind of magic that is so different from all other artists. I am both musician and visual artist. I sense these identities very differently although I love them both. Music is my panacea, when I am at my lowest, when I am harassed and anxious, when I am exhilarated, and when I am sharing joy with Lucy – I sing to her.

This video made me smile, as do all the others of people around the world making music, sharing music and loving music together from a distance. We are distancing, but we are closer now than ever before in our shared grief and the music that is flowing forth.

I cannot thank my former Fine Arts professor, David Clarke, enough for advising me to first pursue music before visual art. This way, I was blessed with the best of both! Thank you, David!

CORVID19: arabesque

I’m not always ranting. Staying home in relative isolation is not at all bad. I am loving it, in fact.

What did I do today?

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Sizzling Walky

Took Lucy out for a walk in the morning. It was hot and humid as usual, so we didn’t venture far.

Managed to read two articles for one of my research projects. Made notes and the stuff is in my brain now, bobbing along and creating gentle waves. Tomorrow I shall doodle a few visual notes. I love my work!

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Lucy & her PEMF mat

Lucy and I shared the PEMF mat. We have been diligently using it. Early days yet, but I think Lucy is actually feeling less tense in her muscles.

Probably ate too much food.

Tidied up some fabric and odds and ends in my warehouse of a bedroom.

Debussy-Arabesque-score

An old favourite

Printed out a free music score of Debussy’s Arabesque, and actually sat at the piano to play it. Been wanting to do this for some time but too much swelling in shoulder, elbow and wrist joints. On anti-inflammatories now, so the swelling has subsided somewhat. Pleased to find out I can still remember how to play, used to be one of my favourites, but it’s been more than thirty years now. The muscles and ligaments are weak. The timing was hard to achieve. I still have memories of me practising this on the Steinway at HKU’s music department in the 1980s. A bit of pain returned, so I stopped. Switched to easier stuff, some old jazz standards, maybe?

Mini-B came over from next door to say hello. I was playing Desafinado – she wanted to join in the fun, but it’s hard to play Desafinado with a fat ball of fluff in one arm!

Tidied up some files and did a bit of photo editing.

Showed mum a few videos of the amazing singing coming from Italy.

Read some more articles on COVID19 – information sponge here. But so heartbreaking at the same time.

Just another simple day in the life of an immunocompromised Autistic Bunny staying home during a worldwide COVID19 pandemic. A very thankful one.

Now listening to Lucy’s breathing in bed, and about to join her in dreamland soon.

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goodnight, Every Bunny

Good night, world. Please stay brave and safe as you possibly can!

spirit

Advance notice of Autistic Bunny brain hopping: this one is about music, COVID19, and Hong Kong. Please don’t ask me why such strange associations, but follow me if you dare, and try not to scream.

After dinner, I was obsessing about this COVID19 pandemic situation, while listening to Glenn Gould playing Mozart Piano Sonatas mixed with sounds of Lucy’s breathing as she slept in Greyhound roaching position next to me. Then, the soundscape and thought bubbles changed, and Hong Kong just flowed like molten gold into this space… Perhaps because Hong Kong is never far from my heart and mind. Some of my best friends live there still, and I have been thinking about them a great deal lately.

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Here’s a graph displaying the cumulative number of cases of COVID19 by number of days since the 100th case in the various countries hardest hit by the pandemic.

Do people wonder why Hong Kong, amidst so much political unrest, with a weaker government, and less top-notch medical facilities as Singapore boasts of, is doing so well? Continue reading

happy flappiness

Around an hour or so ago, I made a happy flappy discovery. I stumbled upon brilliance. My friend, Sumita, is incredibly talented. She’s not only one of the amazing autistic people behind Pablo, she is a talented singer and music composer. Seriously. I don’t toss out compliments willy nilly. I am gobsmacked.

And when one finds a gem like this, one’s spirits are lifted. For this Autistic Bunny, it was sheer joy. Autistic Joy!

Check this out: Goblin Brainsoup. I can’t stop flapping! Happy Flappiness!

creeps & creepers

A cover version, quite lovely too. I was sent this song by a former boyfriend, some self-styled maverick quite talented musician person, and it turned out this was his one and only honest declaration ever – yes he really was a creep. No joke. Beware, you people with autistic children, we grow into adults and we’re still not very socially savvy! Creeps love creeping around us.