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?

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

activism, advocacy vs clement space

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Yawning angel

This Autistic Bunny is not mired in meaningless repetition from “having autism”. This Autistic Bunny is mired in frustrating, seemingly futile repetition due to the utter lack of empathy and/or regard of the non-autistic world. Especially the ones who congregate around the money-spinning, job producing, status boosting Autism Bandwagon. Armed only with the medical model and little to no understanding of lived-experience, they declare themselves ‘experts’ and sell their ‘expertise’ in myriad ways to desperate ignorant non-autistic parents, students in institutes of higher learning who start off wanting to do good and make a difference, peers in academia who know nothing so just readily accept the viewpoints of these ‘experts’, and politicians in positions of governmental power.

What kind of ‘Autism Crisis’ is this? Not created by autistic persons for sure. But autistics are trying their best to clear the flotsam and jetsam that is being tossed around in seamless repetition by the non-autistic world. How do we even move forward one step at a time, when each step is a perilous risk?

To be clear, I say this again. I am not an Autism Activist. I advocate, somewhat passionately and vigorously, only because there is so much rubble strewn across each and every pathway that I need to clear the rubbish before I am able to venture forth. One just cannot safely and smoothly walk along paths that are chockfull of hazardous waste. I am no expert in bomb disposal, and I’d much rather have safe spaces to live in so I can focus on creating my art and doing meaningful workshops to help people, but what else can I do if the way forward is a minefield? Each day, I feel I am neglecting the very Being that is keeping me alive, giving me sustenance in a way no human creature ever can. I long to retreat into that space of clemency where I can commune with my Lucy in our soul enriching elemental empathic way. Yet, I have to sally forth into that awful domain of autism advocacy, speaking the truth where nobody dares or wants to, and all just to ask for basic respect and true inclusion.

I do worry about being blown up someday by one of the mines I am trying to clear. I do this for myself, for other autistics, and mostly to benefit the next generation. 

What kind of world do you hope for your autistic, neurodivergent and/or disabled child to live in, what kind of tomorrow? Today is not good enough. We need to work on a safer, gentler Neurocosmopolitan world.

…. yes… But what am I doing to and for the Pulchritude that lies in my bed so steadfastly preferring life-giving energy to this tired autistic soul? I owe her a debt I am never going to be able to fully repay. My Lucy Like-a-Charm.

Autistic Thriving

 

“How can autistic and non-autistic people grow and thrive, not despite but because of the unique features of autism? And what can society learn from autistic persons?”

Lucy and I shall be at TEDx Pickering Street this Saturday 4 August 2018, talking about autism and neurodiversity. Come join us!

…….

[Autistic Thriving – Dr. Dawn-Joy Leong]
There is a great deal of ‘awareness’ these days about Autism – mainly from non-autistic observations. However, where are the Actually Autistic voices in this cacophony of opinions and interpretations? What is it like to be autistic? Discover how Dawn learns to thrive within her autistic ecology, not despite but because of her autism.
Grab your tickets here: https://tedxpsthrive.peatix.com/
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[自闭世界的生意盎然]
自闭症在当下取得了广泛的关注,只不过这些观察结果都是从非自闭症患者角度获得的。可是抛开这些不和谐的观点和解释,我们从何听到自闭症患者的真实发声?作为一个自闭症患者是什么样子?在这场演讲中,Dawn会向我们分享她是如何在患有自闭症的情况下茁壮成长。

bloviation & the sacrificial lamb

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bloviating babble bubbles

I learned this new word from my friend Rick. I like it. It has a robust movement to its physical form, flow and force. It sounds and feels like thick copious slimy globules arising from a pit of bubbling sludge. This word has a sensorial constitution that matches its meaning. Thank you, Rick!

“Bloviation” – such a proliferate and aggressively dominating activity in the field of Autism and Neurodiversity. Autism is a trendy topic these days, isn’t it? Everyone – from the housewife ‘AutismMom’ to the Professor in Psychiatry, and the outright quacks touting ‘cures’ and ‘healing touches’ mushrooming like unbridled viruses in between – seems to be dancing vigorously around the jolly campfire of Autism.The word makes me think of the many (I have lost count now, it is a long and wearying list) instances of having to silently endure protracted lectures, workshops, conversations, discussions, seminars, forums, conferences etc where non-autistic / neurotypical, so-called ‘experts in the field’ (with ‘decades of experience’ working with countless autistic persons, of course) blather on and on, expounding theories constructed out of little or no insights from actual lived-experiences, confidently spreading erroneous or inaccurate ideas and information, without due citations from progressive science or quoting from old and outdated studies, musing in hyped-up dramatic tones, and performing plastic rituals that ooze tokenism… Continue reading