Uniquely Me Episode 1 – a perspective

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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.

Background

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.

Yet, there is a nagging question at the back of my mind: Why now? Why this much reactivity at this particular point in time? There’ve been programmes on autism in the past, all of them created by non-autistics, all of them focusing on the non-autistic voice and perspective, non-autistics providing opinions and commentary about autism and the autistic people in their lives. There has not been such a strong reaction before, even though the programmes in the past were thickly smeared with the sticky sickly-sweet treacle of Inspirational Porn, even though they were presenting viewpoints that lack any understanding or even awareness of progressive, current research, and even though autistic people were presented in far worse light. I am intrigued by this phenomenon – and even excited. I feel the ground shifting, and I am finding new hope in the midst of this crescendo of vocalisations, and as the dynamics rise and fall, it shows there is life, there is activity, and there is at last communication.

I sat down to watch this first episode from start to finish. It is available on Toggle here with English subtitles (select this option in “settings”).

Misrepresentation of Fact

The first thing I wish to highlight – the most important criticism, actually – is the glaringly erroneous description of Autism (in the English translation) as a “wide range of mental disorders.” This is absolutely wrong. Autism is a neurological condition, a difference in neurological functioning. Many autistic people do have various mental illnesses – but these are not intrinsic features of Autism itself, they are comorbids that are mostly acquired as a result of being misunderstood, marginalised, stigmatised and simply not having our needs met by a society that has little to no understanding of the lived-experience of Autism.

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(MediaCorp, please take note. This terrible English translation is a harmful misrepresentation emanating from sloppy research – researchers for the programme ought to have done a better job!)

The Narratives – Ivan’s Story

The episode opens with the story of Ivan, a 28 year old non-speaking autistic man with complex needs, cared for by his mother. Ivan’s mother speaks on his behalf throughout the programme. It is a ‘tragic’ story, one in which the mother often becomes emotional and recounts her own frustration, fear, feelings of helplessness, and the stigma and discrimination the pair have endured. Sounds familiar? Yes, it is. Everything About Us Without Us, indeed. “It is not easy taking care of an autistic child.” – who hasn’t heard this kind of statement? ‘Autism Awareness’ campaigns (created and run by non-autistics) have blasted this message overtly loud and clear in our faces, since the dreadful “I am Autism” video by Autism Speaks. Is it a surprise, then, that autistic adults react with emotional ferocity? Remember, we are hurting and fearful. We have heard this over and over again. This is probably the tipping point for our Singaporean autistic community. We are wearied and crushed by the weight of being labelled as burdens to society.

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Ivan is filmed hitting his head forcefully. This was extremely difficult for me to watch – in fact, I was flinching and began to stim as a result of the emotional force of this segment. His mother reaches out to him and tries to stop him from hurting himself. He says, “No!” repeatedly.

Mother doesn’t seem to hear his pleas, she is too engrossed in desperately trying to keep him from harm. But isn’t this what mothers do? The mother’s first instinct (if the mother is a loving one, that is) is to protect her child. I know, because this is what I would do for Lucy too – though she is not of my same species, she is my ‘child’ in every other way, because I love her with every fibre of my Being, I am responsible for every part of her existential needs, and I want to shield her from all pain. The problem is, I do not speak Lucy’s language, and I do not understand most of her messages she tries to send to me. Aren’t I no different at the most fundamental level, then, from Ivan’s mother? I cannot claim superiority. I understand where she is coming from. Her desperation. Her pain. Her love. The only advantage I may have over Ivan’s mother is that I am aware that Lucy speaks a different language, I know that I need to try all ways and means to learn as best as I can, and I have the resources to pursue this pathway. I am a researcher, after all, and I myself am autistic. I am able to apply my understanding of both lived-experience as a parallel embodied entity and my knowledge gleaned through years of research, to my quest. I have embarked on canine behaviour study as an accompanying trajectory. But Ivan’s mother has no such options.

My anger and disappointment is directed, instead, towards the “autism professionals” who were supposed to be taking care of Ivan from a ‘learned’ position. You see, much later, too much in fact, it is discovered (by ‘experts’ I presume?) that Ivan had been doing this because he was suffering the intense pain of tooth decay. I find it appalling that the ‘experts’ did not, in the very first instance, look at possible physical, sensorial and medical issues that may be triggering this self-harming behaviour. Instead, they initially focused solely on the behaviour itself – this is very old and outdated science. We now know that behaviour is a form of communication, why didn’t the professionals seeing Ivan know that? It takes a long time for a tooth to rot – an excruciatingly long time. It is torturous, and even life threatening. I know, because my late father was a Dental Surgeon, and a very dear friend of his died of septicaemia from unattended tooth decay – a university professor who deliberately ignored the signs and symptoms, choosing to mask the pain with painkillers. Here is Ivan, a non-speaking autistic man with complex needs, cared for by a mother who is not privy to much comprehensive knowledge about his condition, therefore his life and wellbeing is largely in the hands of ‘experts’ in the field.

The agony that Ivan had to endure most definitely has contributed to PTSD, and now, his pattern of self harming has become a communication habit.

The autistic in me is almost at breakdown point here, empathising with Ivan’s suffering – both physical and mental torment – while the professional researcher in me is outraged at the neglect and lack of perception on the part of the professionals. How long did he have to suffer? A long time. When this could’ve easily and simply been resolved by a trip to the GP and a trip to the dentist thereafter. Now, Ivan has not only acquired obvious PTSD, but he is most likely going to have an additional disability that could have been avoided. He is going blind.

I have admitted that this was not easy to watch. Yet, this highlight is particularly meaningful. I am glad the producer/director decided to include this. I do not view it as portrayed sensationally – in fact, I see that the they have tried to unpack it in a direct and unfiltered way. I hope it serves as a learning opportunity for all, across the spectrum of ‘expertise’ and ‘care’. I say, “I hope”, because it is a hope more than a surety. Normative society doesn’t seem to be very empathic towards autistics, our voices, even if we are able to articulate our thoughts, are largely swept aside and ignored – and we autistics are the ones supposedly lacking in empathy? There is a glaring lack of actual autistic professional consultation and representation in Autism Practice all over the world, though even more markedly in Singapore, because we are unfortunately very much behind current world praxis. This is the part where “Nothing About Us Without Us” speaks the loudest and becomes the most condemning statement, not against the laypersons on the ground, but the professionals, who ought to know better. In fact, until recently (2017), Autism was described as a “disease” in the website of a top university in Singapore. Yes. This is true. Here is the screenshot I took before it was amended – and that is another little story by itself (check out my TEDx talk for details).

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OK, let’s get on with it – here we go again, the Autism Circus is about to start, so grab your popcorn and glow sticks or whatever you think might help you get through this.

The show goes on to unpack some more details about Ivan’s journey:

“In his twelve years as a patient, Ivan has undergone multiple treatments… including early behavioural intervention, occupational therapy, speech therapy, as well as assistance from medical social workers.”

And the result? The ‘success’, the culmination of all this therapy?

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Wow! Look! “He knows how to open the door!”

I can literally hear the voices of dissent: Come on, Producer, are you kidding? What are you doing, showing all this negativity and putting down the autistic person? Is this yet another terrible drama?

Well. Maybe. Maybe not. Maybe there is more than meets the smarting eye here and our too-hasty reactivity may be doing the show a disservice?

I know, we autistics are so used to all the demeaning depictions of us that we are naturally quick to cry out in pain if someone so much as touched us with a cotton bud. Yet, I’d urge us all – autistics and allies – to take a deep breath, and a step back, to view the show again. A second time, a third time even. Perhaps you might see what I saw?

The Narratives – Nigel’s Story

Over to Nigel’s story. Nigel’s family is a supportive one. Everyone rallies round and does their level best. Ivan’s mother too, but she is a single mother, and does not have the same kind of familial support or resources that Nigel’s family apparently has.

Nigel goes to a care centre. From my observation, despite it still being a very tradition-based practice. the people in this centre seem to genuinely have concern for their clients, and it is evident that Nigel and his support professional have built a trusting relationship. The staff have positive truths to say, too.

One support worker acknowledged, “We know they are listening” – a small gesture of presumption of competence. Nigel’s support person described how they managed to establish a mutual understanding – Nigel began with trying to pinch the support person, but the latter quickly realised that, “Actually, he wanted to hold or tap us,” and he then helped Nigel to express his desire to touch in a gentler way, by putting his hand over the hand of the support person. There is a brief moment of eye contact (not that I think eye contact is important at all, but this is just an observation of the scene that I saw) and what I perceive as a comfortable and trusting split second between Nigel and his carer.

This contrasts starkly with Ivan’s situation. His mother spent the last 16 years applying for help, to no avail. She recounts her experiences, being led around the vague bushes of normative systemic elusiveness.

“We went for interviews. They did not reject us on the spot.”

“They were worried for his safety. They felt that the centre did not suit him. They said to find another place for him.”

“They kept on saying the same thing, but nothing was done. In the end, I kept him at home with me.”

Now, again, the scene moves to Nigel’s home. Nigel’s sister is making a laminated collage of pictures for Nigel.

“I am in charge of Nigel’s catalogue of places that he wants to go… He will tell me where he wants to go… Once he points at something, we will know what he wants.”

They have created their own augmented assistive communication system!

“He knows we love him very much. He’s my brother, I’ll always love him.”

And this: “I am proud of my autistic brother.”

I teared up at this point, and even as I am writing this, myriad emotions are swirling around in my Space of Mind. Exultation, hope, joy, and even a touch of envy. To be loved is one thing, to know one is loved takes this up to a different level. And to have a family member declare to the world that they are proud of you, is, to me, the ultimate assurance of validation from those closest to you. It is something that all people yearn for, and something that disabled persons seldom ever enjoy, even those who do manage to achieve success according to worldly standards.

Sensationalism or truthful portrayal? I choose the latter. There was no luscious violin music accompanying these scenes, just muted unobtrusive soundscape, and no overly dramatic theatrics coming from the various people being interviewed. Just real people with real feelings, real thoughts, and a real situation.

Awkward Juxtaposition

At this point, Ivan returns on scene. He has at last been admitted to a centre for support. His mother is of course elated. She is hopeful that the centre will be able to help Ivan. She is also relieved that she now has some time alone for herself. This is a very important factor – self care for those who are full time carers is often overlooked. With detrimental results.

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“He is 28 now. I’ve waited 16 years for this moment.”

But what actually awaits Ivan? And does his mother have any idea at all? Does anyone in the autism industry in Singapore (or even worldwide) have any idea what the following scenes are unpacking? Only a few of us know – a growing body of actual autistic adults who have traumatic memories and a small but hopefully increasing number of researchers and allies. Take a look for yourselves and see if you recognise what I am about to point out.

“Basic concepts like completing a task is an unfamiliar thing to Ivan.” – but whose fault is that?

The therapy session is ongoing:

“Sit down, I’ll give you a carrot!”

“When the bell rings you have to go back to your seat” (The subtitles read: Return to your seat when it rings.)

What is this????? Dog training? No. It is autistic human training… yes… ABA. Applied Behavioural Analysis. At its traditional best. Here’s what Ivar Lovaas, the founder of ABA, famously said of his autistic ‘patients’. This is the foundation for ABA. This is what Ivan is undergoing now. I do not doubt that ABA works. But at what cost to the human psyche, emotional and spiritual wellbeing? Are real needs being met by ABA? Is behaviour change the end all of things? Many thoughts to ponder here, if people are at all willing to ponder, and even to consider that the autistic person is a human being at all.

“You see you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person. (Lovaas cited by Chance, 1974, p76)”

I’ll leave this at this point without further comment. It’s not in the scope of this review to delve into the merits or demerits of ABA. There are other spaces for this, but I urge readers to do their own search – inclusive research and soul-searching. Just Google – “Why do autistic adults dislike ABA”? or something along these lines.

Now, let’s look at the show from a global perspective – yes, you know, that Weak Central Coherence problem that us Autistics are supposed to have? Well, not quite. Science has since proven that we autistics are well able to both attend to detail – much better than the average normative minded person – as well as grasp the central comprehensive view – just as well as the average normative minded person. What does this make us then? How severely impaired, may I ask?

Ivan’s story, as told by his mother, veers more towards the Inspirational Porn category, yet, my opinion is that the almost brusque depiction style saves this show from wallowing in that quagmire. Ivan’s mother is not deliberately painted as a hero, despite her tearful declarations.

Nigel’s story is a lot more gentle, buoyant and hopeful, his family appear a lot more mindful of Nigel’s humanity. This family is proactive and creative, they are also better equipped for this level of application. They have numbers on their side – the entire family is enthusiastically involved in Nigel’s wellbeing, whereas Ivan’s mother is a single mother, and does not enjoy the support of Ivan’s siblings in her mission to care for Ivan. Numbers help. Another thing that helps is education – whether people are able to acquire this on their own or whether people are given opportunities to learn and be taught, education is a crucial factor where adequate support and effective inclusion are concerned. For anyone, let alone disabled people. Nigel has this, while Ivan does not. The show presents the sharp contrasts almost brutally, if one is able to notice this (amidst the distraction of being triggered left, right and centre). Both family units express deep love for the autistic person, but the support systems are markedly and even searingly different, right down to the kind of care centre they are attending.

Tentative Lessons

What lesson is this leading us to learn? What questions has this show thrown up – quite roughly actually – in our faces? Are we willing to recognise them at all?

I am exhausted from this effortful review. I have spent the entire morning – since 6.30am – on this. My heart is beating more rapidly than it should, Lucy has given me several ‘warnings’ that I am approaching overload, I have ignored her and pressed on, because I need to and want very much to put this out there. I want my voice to be heard too, in the midst of this buzzing, humming, ranting, reeling and fist waving.

Don’t get me wrong, I am not uncritical of the way this show has handled the subject matter. I dislike intensely the revealing scenes and descriptions that ought to have been kept private and not aired to the world, of both Ivan’s and Nigel’s (but especially Ivan) sordid ‘impairments’. I will not elucidate them here. It was triggering enough just to sit through those parts. What I am saying is, this seems to be a valiant attempt, a sincere one, despite the ignorance due to lack of formal actual autistic expert consultation, by a non-autistic producer wanting to depict the realities of lived-experience as impartially as possible. Where it fails is the impartiality, perhaps, at least for just this episode, since the actual autistic voice is yet unheard. I do believe in the following episodes, this Voice will slowly be unpacked – yes, I am featured in one of the upcoming episodes and I do have a rather resonant voice, I am told. So, watch out for it sometime on 11 June. No, I do not know how it will be presented. Yes, I am excessively wary of all forms of public media. Each time media requests an interview with me, I become anxious – How will they present my words? Will they twist what I say into objectionable, sensational Inspirational Porn, or worse still, present a distorted, deformed and aberrant version of Autism? I am also tired beyond description of the Colonialist normative domination of the autistic Subaltern, and the subsequent ‘hurt feelings’ of the non-autistic ‘autism advocate’ when autistic people so much as request politely for representation on a platform that is about us and ought to belong to us. How dare we? When they have worked so very hard to campaign on our behalf? How ungrateful of us autistics!!!!

I too am a victim of the worldwide scourge of oppression, repression, stigmatisation, discrimination and patronising condescension. Yes, I am, even with my PhD, I am deemed somehow “less” than the non-autistic person with a PhD just because I am autistic. Especially – and tragically ironic this is – where it comes to the subject of Autism.

However, I am also a researcher and an artist. A scientist who is ever searching for facts and truths and a dreamer yearning for better ways to represent these facts and truths. I therefore have a lot of hope – it is a deliberate choice I make, in defiance of the hopelessness and forceful despotism that autistic people as a whole face – and these are my feelings and considerations after watching this first episode.

I consented to being featured in this series only because when I met the director, my instinctive sense of her Being was not a negative one. She professed a willingness to learn, she promised to do her best to depict truth without shrouding it in drama or theatrics. I also researched her previous work and I found her depictions sensitive (my favourite was the one about the elephants: The Elephant Messenger). I weighed the situation. I knew the director is non-autistic. I was aware of her lack of in-depth knowledge and understanding of autism – but how could I expect a non-autistic film director to know more about autism than an autism ‘expert’ with a PhD, while even many of the latter types display appalling ignorance of actual autistic lived-experience? I decided to err on the part of hope – I allowed hope to lead me. We talk so much about advocacy and awareness – too much really – and so little about actually bringing this into the living rooms of the ignorant masses. Here is a chance for our stories to be told. Imperfectly, of course, by a non-autistic person – yet how many actual autistic persons in Singapore really understand themselves from an intrinsic viewpoint, since they have all been steeped and almost drowned inside the bog of non-autistic normative measurements, observations and pronouncements? Not until recently, with the advent of the upcoming Asia Pacific Autism Conference 2019 (APAC19) did autistic people in Singapore even have the chance to get inside an autism event, let alone be properly represented. And even this, was a costly and monumental endeavour on the part of a few actual autistic advocates and allies in Singapore, Australia and the UK (myself included). I took this plunge and I have yet to find out whether I was right or wrong, or, perhaps I should see it this way: I am just doing what I have to do because this is an inexorable part of my own journey of Beingness.

Love is a Pearl of Great Price. And sometimes, the cost is excruciating. Do we want to dare to love our autistic people, who are part of the wider amazing diversity of humanity?

While we wait to view the rest of the episodes, I’ll leave with this song of mine to ponder.