only an expert

The Autism Grand Circus Industry has grown out of proportion. Tiresome and tiring, depending on where one happens to be standing. Everyone claims expertise – from the Autism Mom who has written a few books based on their observation of their own child/children and now goes around giving talks and dishing out sage advice about autism, to the learned non-autistic professional with many degrees in Autism, everyone is an expert dealing with the Autism Problem. Everyone, that is, except the Actual Autistic person. Autistic people are mysteriously ignored and sidelined in the Autism industry. A phenomenon so strange that it is almost eerie.

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Can magic mushrooms cure autism?

Talking about bone-chilling, I recently found this in a webpage of a business specialising in “treating” autism. The alarm bells rang loudly when I saw “Chelation” and “CD Water”. Then I did some research on the various “Dr” people named in this letter, and found them all to be promoting expensive dubious ministrations aimed at “shedding”, “recovering” and “overcoming”. Some of these involve injecting the autistic child with unregulated substances, others focus on dietary interventions, all couched in complex-sounding pseudoscientific terminology. Is your blood curdling yet?

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An autistic friend of mine has been valiantly trying to educate parents about snake oil sales pitches, dodgy programmes and harmful approaches to fixing the autism problem. Very brave person indeed, because he was variously derided and chided, treated like a foolish child, instead of someone worthy of respect. I often wonder, do these same parents even have the mindfulness to ponder this: If you treat autistic adults this way now, what kind of world are you preparing for your autistic child to grow up into? Is this how you’d want others to treat your autistic child when they become autistic adults? Or are you gambling all you’ve got on the great “cure” casino floor, thinking it’s going to be fine, your child will be rid of autism by the time they become adults, and hence they will not have to face this kind of demeaning and crushing ableism?

I honestly find it difficult to fathom what goes on in these parents’ minds – there, I admit it, I lack Neuronormative Theory of Mind! It is excruciatingly difficult to be thusly illogical and unthinking. Yet, I am told I should empathise a little more, “slow down” and allow others to catch up. My doctor says it’s good for my heart – you know, that strange squishy squashy rhythmically driven organ responsible for pushing blood around the body? Yes, that one.

Perhaps 2019 will be a year of “slowing down”, but in a different way: that is, finding Clement Space inside gentle things, wondrous connections and conversations with the material universe. I love my autistic world, it is a pulchritudinous eco-system, but the crass, grating vibrations of the normative realm is at odds with autistic tranquility. Too many experts. So little space for Beauty.

antinomy

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Starlight, star bright, what will you be tonight?

“You can’t be autistic! You have such good eye contact!”

“No, you’re not autistic are you? You’re so articulate and intelligent!”

“Amazing, you have such excellent credentials, I don’t believe you’re autistic!”

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Teetering on the edge of whose asininity?

“Oh, we’re sorry but we have a policy never to employ autistic people here.”

“Our apologies, but you do not suit.”

“I’m afraid autistic people do not qualify.”

reciprocate

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I dance because I cannot walk…

Should a disabled person have to apologise for not performing according to ableist constructs?

Should a wheelchair user apologise for not zipping up steps and not running marathons?

Should a deaf person apologise for using sign language instead of the spoken vernacular?

Should a blind person apologise for feeling, touching, smelling and listening to the world instead of seeing the way the sighted do?

Why, then, should an Autistic person apologise for not performing to normative social standards?

Who writes the librettos? Who pens the symphonic blue prints?

Look me in the eye!

Don’t stare at me for goodness’ sake!

Sing when you’re told to sing.

Stop singing when you’re told not to sing.

Do not flap, you look silly!

You need to learn to self regulate!

You’re crying for nothing again.

Can’t you see I’m hurting, how insensitive can you be?

All the world’s a stage… but who directing the Grand Theatre?

mommy dearest

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Eat this, darling, it’s good for your Autism!

Why are so many autistic adults upset about and with “Autism Moms”? Why do so many autistic adults (myself included) seem to speak so ‘harshly’ against Autism Moms? And why are so many autistic adults broken, devastated, crushed, traumatised and yes, suicidal?

It is a collective hurt, a cultural pain and trauma suffered by the Autistic Community, that is embedded deeply inside our Being. No other group of disabled persons in recent years has been subjected to such forceful and sometimes even well orchestrated multi-dimensional assault, exploitation, misrepresentation, patronising condescension and stigma as Autistics.  Everyone is an expert on Autism, except the Actually Autistic. Continue reading

describing torment

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clement juxtapositions

Dogs are amazing creatures. Their ability to adjust, accommodate and survive never ceases to intrigue me. Too often, despite trauma and abuse, dogs nevertheless seem able to rise to pulchritudinous grace, something which I long to be able to learn and adapt to my own fragile humanity.

Here is something I wrote this day three years ago, describing in words – though most inadequate – what sensory overload is like in the midst of trying to live and survive inside normative-dictated frameworks and prescriptions. There is sadly very little ‘clement space’ for the autistic entity inside this overwhelming overstimulating normative world – well, almost none at all.


 

13 November 2015 at 18:38 Continue reading

Autistic Thriving @TEDx Pickering

 

“Autistic Thriving” – Dawn-joy Leong & Lucy Like-a-Charm. (Captions available on Youtube – please turn on cc option.)

Apologies for not posting this earlier.

“Just what you being made ‘aware’ of? And where are the Actually Autistic voices in this grand cacophony of opinions and interpretations?”

ingannation

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ingannation
(IN-gah-NAY-shun)
Noun:
-A cheat, trick or clever deception.
-The act of making someone believe something that is not true.
-The act of deceiving someone.
-The fact or condition of being deceived.
-Something that deceives.
-An act or statement intended to make people believe a falsehood.

Archaic – origin unknown.


 

I promised my good friend Rick that I’d make good use of this word. So, here is my take on the old, obsolete word, now démodé.

I’ve been thinking about lies and deception today. What is the most prominent, most soul crushing feature of my recent journey that focuses so much on advocacy? Ingannation. Continue reading

awful spectacle

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I posted this in my Official Facebook Page on Friday. It was a reflex reaction to having viewed two terribly humiliating and degrading videos of a young autistic child having a meltdown, recorded and uploaded to one of the many Autism Parenting Support groups in Facebook, by one of the many self-styled Autism Mom Guru types. Continue reading

special

THIS VIDEO! Yes! I couldn’t have said it better.

I cringe at the term “special needs”. It has never settled comfortably in my mindscape. Whenever the normative world employs this term, it has always felt like a tiny slap in the face, imperceptible to the “not special” people who view themselves as “more special because not disabled”. Calling us “special” in that way gives the normative a kind of authority, a Colonial power, over the “special people with special needs”.

At the age of 53, with a PhD that won the very highest award given to only one top candidate a year, I am still met with saccharine condescension whenever I reveal the already widely known fact that I am autistic. Continue reading

vivification

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Colour, smell and clever arrangement make food more inviting, often enhancing the actual taste itself. Texture also plays a big part. Crunchiness can add a delightfully cheery  dash to even the most ordinary of foods. Of course, the chemical transformations that occur when foods are cooked in certain ways and combined never cease to fascinate.

Food has become more an everyday indulgence than a lively challenge since returning to home ground. In many ways, I miss the latter days, though I have not ceased being grateful and appreciative for each morsel I imbibe. Perhaps the weather here – the humidity – makes everything taste less defined, and having such abundance has dampened the enthusiasm of discovery or provocation. I also cook a lot less than before, as cooked food is cheap and readily available here in Singapore, and my dear foodie-chef brother-in-law either takes us to new places on investigation missions, or he brings his expert professional culinary skills to our table at home.

I do still like to notice the little tiny interplay of colour, tonality, texture, smell and the way each component communicates with the other, like small musical pieces or miniature dances unfolding inside my bowls, plates and dishes. Cutlery interacting with these morsels form a personal and even intense connectivity and communication, sometimes intimate in isolation, and other times part of a larger conversation with the human sensory realm.

It’s Friday yet again. I do miss our weekend noshments in Paddington. There was an aura of preciousness and bonhomie that remains unique to that particular juxtaposition of company, time, place, space and situation – an what conversation! There can be no replication.