imperilment

Autism Grand Circus

An autistic friend recently supplied me with this link, a tongue-in-cheek “New Age Bullshit Generator“, which generates a slew of pseudoscientific propositions for any kind of purpose you wish to apply it to. We were discussing the topic of snake-oil and pseudoscience, and its prevalence in what I call The Grand Autism Circus.

On the one hand, the New Age Bullshit Generator is an exercise of ironic humour (and very clever programming), but one should not ignore the presence of a grave, sombre message that lies beneath. Pseudoscience permeates the autism world, which is a fierce and aggressive circus that does not exist in the realm of any other disability in today’s context.

We are now in the 21st century, yet snake-oil cures still abound and vigorously thrive in the autism world. From MMS / CD Water (which is basically bleach solution), ASEA (saline mixture), to Chelation and a plethora of supplements, with accompanying theories and even anecdotal ‘evidence’ from grateful parents that all sound great but for the fact that they are based on nothing more than fanciful claims. In fact, these are condemned by the scientific community, and considered dangerous and harmful. Autistic advocates have and are still fighting these with might and main, yet they continue to be administered legally or even some illegally. (Just look at the anti-vaccination movement and you will get a sense of the futility of the fight, the utter senselessness of the fear mongering and the casualties that fall on the wayside as a result.)

There is also no shortage of programmes aimed at “healing”, “recovery”, “cure”, “alleviating”, “inner work”, “transformation” etc, sprouting pseudoscientific, pseudo-religious, spiritualistic, new-age jargon that stop short of literally prancing with the faeries around organically grown chives. Some of them are, in fact, quite ‘efficacious’ to a certain extent, with a mix of legitimate methodology blended in with fanciful ideas that seem to pop up from nowhere. Some come with impressive price-tags, like the Son-Rise programme, and others are fronted by unscrupulous PhD-holders in various fields of ‘expertise’ – from education, nutrition, psychology, to yes, even medicine – and all claiming to create near-neurotypical creatures out of your autistic child.

Sadly, a number of these are propagated by actual autistic people, with and without additional scholastic qualifications. This latter group use their lived-experience as leverage to legitimise their quixotic, chimerical claims. Ignorant, misguided or deliberate hoaxes out to profit from the Autism Grand Circus? I am not able to make absolute judgement, nor do I wish to do so with regards to fellow autistic persons. I do know that some of them jump on the bandwagon simply because, well, the Neurotypicals are doing it, so why can’t they exploit their own neurology too? There is a great deal of money and power to be gained from autism. A few I’ve met claim variously to be aliens or angelic beings visiting the earth on messianic missions to create a new-world order, promising intergalactic shipments of humans from a dying earth to a virgin planet ‘somewhere out there’ (though they do not specify how exactly this will happen and where this mysterious planet actually is), aiming to succeed where Jesus, Gandhi, Buddha failed, claiming better organised plans than Martin Luther King Jnr, Nelson Mandela and even Hitler himself. They are determined to succeed where other great (the good, bad and ugly) humans in history have failed. The autistic self-styled ‘leaders’ of such kinds of ‘spiritual’ movements may seem harmless, even laughably ridiculous – and may yet have naive and good intentions, albeit somewhat misguided – but one should also bear in mind that many menacing cults begin this way too, autistic-led or not.

While I vigorously promote and support the adage, “Nothing About Us Without Us”, and have been doing all I can to advocate for disabled and autistic leadership (and training of the younger generation to take up leadership roles in community and professional practice), I need also caution against aligning with the wrong causes.

Autistic people are humans. The fundamental premise of autism advocacy and the call for equity and respect is the proposition that society should recognise autistic persons as part of humanity. Hence, the fact that humans come in all forms with myriad agendas, visions, missions and purposes in life should not be over-ruled by the desire for “unity”. While it may be true in some respects that “the whole is greater than the sum of its parts”, this oft-(mis)quoted saying attributed to Aristotle is not a reason for aligning with or embracing all and everything for the sake of a false sense of ‘unity’. It just does not and should not work this way.

How does one tell the difference between snake-oil, pseudoscience and the bona fide? It is not easy in some cases, because even what is developed in lofty hallways of respectable institutes of higher learning may sometimes be in error. Nevertheless, fundamental principles should apply. The individual needs to approach warily, armed with an investigative mind. Do thorough research, check these people’s websites if any, read their writings and thoughts, seek out valid citations, weigh their claims against established scientific measurements and evidence, find out what others in the community are saying collectively, and observe the ways in which these remedies or programmes are dished out.

Sometimes, one needs to make difficult decisions to part ways with persons whose doctrines, principles and raison d’être are at dissonant odds with one’s own ethical and moral framework. I have found myself caught in such complex conundrums more than once in my life’s journey. Each time, it has taken a part of me, sapped my limited pool of mental, emotional and physical resources, slapped me in the already tender ‘face’, dished out mockery and attacked the very integrity that I seek to protect. Despite having spent time, energy and efforts at supporting and educating these individuals, when push came to shove, I’ve been accused of heinous brutality, ingratitude, betrayal of trust (“I trusted you” is a common reprimand), diabolical malice, defamation and even received threatening messages (usually from persons using fictitious names on social media) for standing firm. One person even ironically labelled me “dogmatic” because I was openly critical of their mistreatment of their assistance dog, another person accused me of being heartless, because I requested that they seek psychiatric care after they’d physically attacked me in a public place during a psychotic episode of theirs. And of course, the inevitable “I hope you realise the serious implications of your decisions” and “this will not go down well” sinister comminations.

Yet, each and every time I finally made the right decision and acted on it, there was and is a sense of deep and full relief, a cadential ‘sigh’ and a return to genuine Selfhood and Clement Space.

I am, at best, a reluctant autism advocate. I shy away from being declared a ‘leader’ in the autistic community. I shrink from the term “activist” like a quivering mimosa fern. I merely wish to do my best to help others. My own raison d’être has been and remains “to empower beauty in the vulnerable and unnoticed”.

I am a researcher, and a multi-art practitioner. Not an Autistic Superhero. I do not wear red underpants over a blue bodysuit, and I do not have a red cape, even if I do tend to prefer unconventional fashion.

I long to retreat and retire from the Grand Circus, the crass ferocity insults and terrorises my frail sensibilities, but I remain only because I hope that my small fragile voice of reason might bring understanding to a few, and might inspire a few to launch into powerful and upright endeavours that truly bring positive change to the greater community. This is the reason I will continue to speak on themes of diversity, equity, access, inclusion and respect for the disabled, autistic and neurodivergent, anywhere that will engage me and to anyone willing to listen. (Well, almost anywhere, because I will not work with those whose principles are in direct conflict with mine.)

I shall devote henceforth the bulk of my time and resources on attending to Lucy within our shared Clement Space (she is not growing any younger and our time becomes more precious as it is limited) and of course dedicate myself to my real mission: my multi-art practice and the unfolding of Scheherazade’s Sea, a journey of finding grace and Beingness. Inside these two Clement Spaces, I want to Be, to grow, and commit to always learning, developing and refining my artistry, to contribute to the wider discourse of disability, the arts and the artist as a living vibrant persona.

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