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.

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?

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

“For the first time, I felt like I belong” – Reflections on the NAS Women and Girls Conference

So much here to think about.

Mind the Flap

…Well. Where do I start?!

Earlier this week, Sam Ahern and I were lucky enough to attend the National Autistic Society Women and Girls Conference 2018 to talk about Are You Autistic?, misconceptions about autism and our general realities as autistic women. More importantly, I got to meet dozens of brilliant autistic women and others in the autism community (and put faces to lots of usernames!), share stories and strategies, be part of a massive conversation online and offline, and learn so much more than I could have expected. Here’s an attempt to sum up some of my initial takeaways from the event:

Anxiety is a huge part of our lives – and it really doesn’t have to be

Emily Swiatek, employment training consultant at NAS, provides a simple but effective description of anxiety: “In our heads, a little lizard brain still thinks a T-Rex is coming to eat…

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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?”

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

Giving is getting: the social ‘cure’ for autism (the power dynamics exposed).

If you read only one thing this weekend, read this!

“The truth is that the current neurological hegemony practices daily micro-aggressions in which autistic people are not welcomed. They’re also barred from giving in the mainstream of life.

Some of us experience just enough welcome (important to acknowledge a relative privilege) and gain the tools with which to carve a niche. But too many don’t. Every human needs a baseline of welcome, and access to the power of giving.”

The other side

Sonia Boué, artist performance image. Sonia Boué – process image for a forthcoming performance piece.

I acknowledge my privilege – I am enabled to give in my art practice. How many autistics are excluded? Process image for a forthcoming performance piece. 

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Giving is getting.

Yes – I’m talking power dynamics and socially embedded disadvantage.

My thoughts flow from a series of encounters.  Most notably a comment about ‘functional’ language in autism. Neuro-normative culture misinterprets autistic expression.  It tends to frame what is considered  ‘functional’ through the lens of its own (culturally dominant) social orientation.

Dominant cultures tend to make pathology of what they perceive as ‘other’. For example, not recognising language acquisition on its own (collecting and repeating words) as functional because it seems to serve no obvious ‘social’ purpose.

Neuro-normative hegemony has it that a child of a certain age ‘should’ talk about their day, their friends, and so on.  Within this framework of understanding, building…

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love me

 

An old friend. Probably the only one left from that era of innocence. A little petite dinner. A small humble celebration. Love. No need for big glamorous party. I don’t want many many flittering fluttering bits flying around my sphere, making me nauseous and giddy. Happy with just one old friend, a takeaway meal, and two mini little cakes for dessert – to celebrate my very obscure arrival on earth.

 

Love me, or leave me. Simple as that. Many have left, others have entered the clement spaces. New and old, a blended grace. And there is now Lucy Like-a-Charm. I am content.

happy birthday Bunny

Yesterday was my birthday. 53 years ago on this day, the Autistic Bunny was introduced into the soggy boggy sparkly world.

53 years later, still trundling along but such a difference it makes, with a beloved companion, the most precious of all life’s gifts. A Gift from Cosmic Heaven.

How did we spend this day? Continue reading

songs

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I am listening to the gentle rise and fall of Lucy’s breath, her warm scent wrapping around me like a soft blanket of wellness – a song in itself so masterful in grace and pulchritude that it cannot be of human construction.

For some time now, I have been feeling a deep longing to return to music. A Facebook friend posted some guitar arrangements he did and listening to them brought me back to my own songs from a very distant time and place. Looking back, it was as if I was lost and meandering my way through like an Alice inside a dreamscape – a blend between Salvador Dali and Kandinsky, with the intermittent clarity of Paul Klee. Entrapped and enslaved by malevolent Other, music was my only pathway to salvation of Self.

I revisited these old songs on my SoundCloud page tonight, and Lucy doesn’t seem to mind at all. It feels like a strangely sweet layering, listening to these sounds and enunciations swirling above Lucy’s comforting breathing in and out, a rhythmic anchor that I did not have at the time, but was searching for. It took 12 years for me to find my way to Lucy. Now, I think I am slowly finding my way back to music again.