I shall be chatting with Paul Micallef on 18 October about Autism-Friendly Learning Environment, how to encourage learning from within the autistic paradigm, rather than by correction and coercion to comply with neuronormative channels.
Autism Explained Online Summit is a week-long online summit featuring autistic and non-autistic professionals in the field, providing insights and advice to parents on different themes. The line-up of speakers includes Temple Grandin, Peter Vermeulen, Yenn Purkis, Daniel Giles, Andrew Whitehouse, Shadia Hancock, Wenn Lawson, Tom Tutton, Chris Varney, Emma Goodall, Jac den Houting, Chris Bonnello and many more presenting eclectic viewpoints, all in the same space!
It has taken me a long time to finally write about my appearance in the last episode of the series on Autism, “Uniquely Me – Episode 6“, which aired on MediaCorp’s Chinese Channel 8 , on 11 June 2019.
I’m honoured to be paired with Jun Wei, a fellow musician, in this feature. I thank director Bee Har Koah of Threesixzero films for her sensitive handling of the subject. It was a pleasure to work with her, and she did not disappoint my trust in her artistic integrity. My greatest fear each time I consent to be featured in public media of any kind is the twisted portrayal of “inspirational porn”, sensationalism and evocations of a grand pity-party. It did not happen in this series, and I felt the episode unfolded in a practical, unemotional way, offering concrete real-life glimpses into our lives.
I appreciate that the episode highlighted our artistry and our passion for music and art, rather than focusing on “overcoming the odds”. It did not create heroes out of us, but rather presented a human side to our parallel autistic embodiment.
I also love the way director Bee Har included Lucy in such a sensitive way. Lucy is truly my muse, closest companion, Canine Angel and lastly, my trained assistance dog. She has traversed with me, always watchful, always faithful, across seven years of adventure, tumultuous changes, unexpected achievement and inspired my concept and practice of Clement Space. I owe her my very life, I wouldn’t be where I am were it not for her steadfast and cogent presence.
Many have asked me whether I have directly benefitted (financially or career-wise) from all the exposure in the media. My answer is a definitive no. I have not received any grand offer of financial gain, fabulous professional engagements or that elusive thing that autistics all desire – a decent job commensurate with our skills and qualifications. Quite the opposite, in fact. I have said often that I find it stressful and anxiety-laden to be interviewed or featured this way. I am revealing intimate parts of my life, leaving myself open to criticism and gawking, and I never know if or when the journalist or feature director will be faithful to my guidelines and demands for accuracy and respectful portrayal. Thus far, I have been lucky to a great extent – I have managed to avoid being held up as “inspirational”, and the media coverage has been largely respectful according to my own terms. But why do I even do this, if it brings so much discomfort? My reasons are simple. This is my contribution to my autistic community, my way of advocating for respect, equity and understanding, presenting the human side of my autism, laying bare my own fragility for a chance that someone somewhere may be blessed by my derring-do, comforted by my facing life challenges with honesty, or persuaded by my courage to step forward into the harsh, unforgiving limelight.
We are all autistic, we share a common neurological function, we face similar challenges, yet we are all uniquely different individuals in a richly textured existence. Listen to us, learn from us, respect our narratives, and embrace us as part of the fabric of human existence.
Autistic pursuits and objects of passion: lavish indulgence or crucial intervention?
Autism advocacy can be devastating savagery to the Autistic Artist’s soul. Relentless and aggressive, the crass normative dominance chaffing against autistic fragility, valiantly struggling to be heard amidst Daedalian gyrations, asphyxiating gas-lighting and gelid silence, is crippling.
The Artist needs to recover Sense of Soul, that Clement Space within which emanates forth, once revived and strengthened, as vibrant virtuosity and vitality. Spiritual Sustenance.
And this Autistic Artist has been slowly mending, resuscitating, rearranging, invigorating and awakening Clement Space, Autistic Joy.
An ongoing exercise that is critical to Beingness, that marks the difference between bleak existence and dynamic Life.
This morning, I unearthed an important Object that performs a key role in this unfolding and unpacking. It is non-functional in the mundane utilitarian sense – a pair of old Ferragamo wedge shoes transformed with rocks, cheap plastic baubles and paint. It cannot be worn, it does not fit into the category of High Art, whatever that is spun out to mean, it is not aesthetically pleasing in a general sense, and it has no monetary value. Yet, it is functional because it serves a completely different purpose, sublime yet forcefully tangible to the ones who are able to perceive its potency. For this Autistic Artist, who created this object-thing, it and the act of bringing it out of its storage space, of un-hiding, un-masking, marks another hidden, intimate junction of reflection and compulsion towards healing and growth.
Much Ado About Nothing? – Thoughts on the curious incident of the missing photographs.
Anyone reading or following my writings in social media and here in my website – especially my ‘friendly’ stalkers – would know that I have been fussing about having been omitted in the official social media for #APAC19 – the Asia Pacific Autism Conference 2019 – which recently came to a most successful end.
You may gasp at this, and ask, “Why no autistic Keynote?” Understandable, many have asked me this question. Well, to be fair to the Singapore organisers, what has been achieved in APAC19 already represents a quantum leap in the direction of inclusion and progress for Singapore’s autism scene. I cannot express how very genuinely pleased I am at this amount of progress made within such a short time frame. But this is what is great about Singapore – once the powers-that-be decide on something, we can do it really quickly and pretty well too. This is the very first time an autism conference in Singapore included any autistic voices at all. Actual authoritative autistic presence in autism conferences was unheard of before this. So, please hold off the harsh criticism and bear with us. Baby steps. In fact, this wasn’t really a baby step at all – the baby literally propelled across a huge ravine and up a formidable mountain in one grand leap! Kudos to the organisers for taking on board the suggestions they did, and embracing the theme of ‘thriving’ in such a positive way. Autistic adults in Singapore finally had the chance to stand up and speak out, and those who presented did so with great flair and panache. I am proud to be among such brave company. The stigma is real, and many of them had to think twice, or more, before deciding to ‘come out’ of the ‘autism closet’ into the public domain – because fear of losing one’s job on account of one’s neurological difference is a very real thing here in Singapore.
So, back to the grand ‘fuss’ that I made over the last few days about the seemingly trifling issue of a few photographs of me being missing from official social media. I should not even need to explain, because any reasonable and reasoning human being would know the import of this, but I have decided to do so, in case some people failed to grasp it (there’re always the stragglers, and this explanatory post is for them, because I don’t want to leave anyone behind).
I have to say this episode was the most unsettling to watch – almost sliding down the slippery slope of the tragedy-cum-heroic narrative, this episode featured two ‘strong’ women speaking about their lives with their autistic children, who are now young adults.
I felt very sad for the young man, Zhen Yu. Far be it for me to doubt his mother’s love for him, her dedication towards the young man pervaded the space, but there were many moments in her interaction with the young man that made me cringe and even bristle. I felt his distress, there were moments where I knew he was attempting to communicate, but the mother completely missed the gestures and sounds he made, and she chided him, as if he was a naughty toddler making a nuisance of himself, preventing her from ‘adulting’ in front of the camera. There was a split second where she even grimaced and rolled her eyes. There was a sense of embarrassment, she looked exasperated and annoyed, when interacting with him. The mother spoke mostly about her hopelessness and despair, not his.
The other autistic young person, Edura, appeared to be happier – there was a lot of physical affection going on and some smiles and laughs. Edura’s mother runs workshops or ‘sharing’ sessions for other mothers with autistic children, on physical touch and muscle relaxation. I did cringe at the word “heal” – just like “cure” and “recover” all speak of ableist concepts of autism as a scourge / disease – but I’ve come to expect it of the neuronormative way of thinking.
Seems as if I’ve been involved in quite a few “firsts” in Singapore lately. The most recent was the very first Autism/Neurodivergent-Led, Disabled-Led Art & Design residency, which was support by the National Library’s library@orchard branch, and yesterday saw the soft opening of Singapore’s first Neurodivergent immersive and interactive space – crafted by two autistic artists and two artists with Down syndrome, curated by Esther Joosa and Imran Mohamed for Playeum, a centre for children to discover creativity in multiple ways. Continue reading →
The first episode of “Uniquely Me” – a series about autism and autistic lives in Singapore – aired last night on MediaCorp’s Chinese Channel 8. Immediately afterwards, there were rumblings and rants emerging from the adult autistic community in chat groups and on Facebook.
Some contextual background is needed before I launch into my own perspectives and reactions to this twenty minute show.
Autistic people – we are an oppressed and traumatised, vulnerable and hurting community worldwide. As autistics, we are already predisposed towards hypersensitivity, detail orientation, and communicate with the world in ways unlike the normative. Add to this the accumulated collective cultural history of Autism (see Steve Silberman’s “Neurotribes” – the best book published thus far on the history of autism), and the specific situation here in Singapore, where the perception of autism as a whole is mired in the old medical model, and autistic people are generally presumed incompetent rather than competent, completely devoid of our own voice / voices: we have thus acquired a collective trauma, and individual heightened anxiety around the subject of Selfhood. The setting is a painfully raw, tender, largely confused and ignorant, and emotionally volatile scenario. It is not surprising, then, that many in the adult autistic community have reacted explosively, with anger and shock, at this very stark presentation of autistic persons with complex needs in the first episode. Continue reading →
Autism is trending these days. Well, it’s been top of the pops for quite some time, actually. The more sensational the better, it seems, thanks to neuronormative machinations. Big money is to be made here, so it’s not surprising that the field draws so many quacks and snake oil peddlers. From MMS (which is basically bleach solution) to ASEA water (saline water), to a plethora of expensive dodgy programmes claiming to help “cure” / “shed” / “overcome” / “reverse” Autism, the marketplace is busy indeed.
I can understand that parents, especially non-autistic parents, are desperate. Parenting is not easy by any measure. For a non-autistic parent of an autistic child, finding themselves awash at sea in a realm completely alien to their own, grasping at straws for quick salvation is not unnatural at all. However, what grieves me is, in their readiness to part with money for snake oil, it is their autistic children who will bear the brunt of this folly, the children who will eventually grow up into traumatised autistic adults or autistic adults deprived of their intrinsic worth performing poor imitations of neurotypicality. Continue reading →
Lucy and I shall be at TEDx Pickering Street this Saturday 4 August 2018. Come join us and hear my ideas on how autistic and non-autistic people may grow and thrive, not despite autism but because of the unique features of autism, and what society can learn from autistic persons.
[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/