I have just spent two full days in a hothouse setting trying to learn a skill that I feel quite hopelessly incapable of mastering because some key elements require a high level of social agility which my autistic embodiment just cannot muster, try as I might. Sitting in my chair and trying to look engaged with the subject matter while weaving in and out of lucidity was about all I could achieve. My brain felt broken while my body was hollering unhappy slogans. It’s the kind of scenario where people who don’t know me well would look at me, incredulous, and say, “But you have a PhD, how can you not understand such simple concepts?” Um… well… You see, it’s not the concepts that I don’t grasp, it’s the ‘knowing-feeling’ that I cannot execute or bring to life these fundamentals that cause my brain to short-circuit, and thus my Being rejects the entirety while in the process of imploding. Continue reading
I posted this a few minutes ago.
Where do we draw the line between being pushed beyond endurance and reasonable resilience when the Autistic person must navigate and survive in the normative dominated world system? How many ‘normal’ things does an autistic person have to force the Self to do at the expense of mental and physical health? Survival?
It is a question I have been asking for a long time now, on behalf of myself and other autistics who are labelled “high functioning” by the neuronormative world of autism observers, and thus expected to operate just like the neuronormative, or even better (because we are so ‘brilliant’, right?).
The more we are able to ‘perform’ in the Grand Autism Circus, the nearer we get to the “nirvana of neuronormativity” (a quote from my APAC19 plenary speech), the ‘higher’ we are labelled by the narcissistic systems of the normative majority. After all, if one does not ‘appear’ or ‘look’ autistic, it is must be a compliment, because identifying as autistic is the opposite of gaining approval. This attitude weighs heavily on every autistic person’s shoulders, though reactions may vary widely.
For some autistic people – like one self-styled autistic ‘leader’ that I know – the burden of normativity has become an achievement to aspire towards, and being or appearing ‘normal’ is to them a positive trait to attain. This same ‘autistic leader’ holds the view that autistic people should not receive any concessions or accommodations, that we ought to tough it out with everyone else to prove our mettle. Our disability (to function as neurotypical) is thus not respected as a disability according to the social model of disability but rather considered an intrinsic flaw to be eliminated under the medical model. Ask the said autistic ‘leader’ about those of us deemed “low functioning” and there is deep, dark silence. It is an awkward fraction of a second, before the person just blanks it out entirely. As if those of us with complex needs do not exist in their mind, or should not, for the sake of preserving their warped rhetoric. In fact, each time I speak ‘autistic’ frankness, each time I stand for and upon my moral ground on issues important to me, this person will churn out a well-rehearsed and deeply ingrained opinion: “this will not go down well” (with the XYZ of normativity)! A sad situation, really, and I don’t blame those autistics who cling to ableist frameworks forced upon them by the neurotypical powers that be. It is a grievous thing when one is continually looking over the shoulder, fearful of how things will “go down” here or there, sacrificing not only Selfhood, but also warping and bending ethical and moral constructs which contribute to and uphold personhood and identity.
Some autistics, as a consequence, hold on to the approval of the fickle-minded normative world, trying their best to negotiate with its unstable morality, just for the remuneration of a loftier ranking in ableist functioning labels. They are proud to claim superiority over those of us with complex needs, or who dare to show our natural autistic differences. I, however, abhor functioning labels. As an autistic person labelled “high functioning” by normative forces that be (well, I have a PhD and I topped my cohort, didn’t I? I can’t be all that severely autistic, right????), I am constantly flabbergasted, befuddled, perturbed and oppressed by these labels, because they bring with them stigma and often horrifying expectations blended with ignorance, which is sometimes blatant and conveniently deliberate. This is prevalent even among the community that call themselves disability advocates, who often fail to grasp and convey the kind of crystal clear communication that the autistic person needs (in order not to fly off the precipice in a state of panicked anxiety).
For example, I have been (or at least I am led to think) supposedly working with a few others on a project about disability, access and inclusion. However, nothing has happened for months – not that I know about anyway – and yet I hear snippets of this or that connected to this project. When I ask, I get vague responses that amount to no answer at all, and I am tossing and bobbing around with the flotsam and jetsam in a sea of ambiguity. What is happening? Am I in or out? And why this or that? Yes, to the neuronormative, rejection is embarrassing to convey, so they take forever and ever to inform the autistic person, and too often it is a case of never ever. What they fail to understand is that the state of suspension, not knowing, is a kind of purgatory, a cruel condemning punishment, to the autistic person waiting to find cadential resolution for any social transaction – and work with non-autistics is a social transaction, in fact, more time is spent on social interaction than on the actual work itself. Fine. I am not so ignorant as not to know that nobody likes rejection, but to my autistic mind, the few seconds of discomfort upon being rejected (for a job, in a relationship, in answer to a query etc, whatever the case may be) is by far better than the eternal or protracted torment of never being clearly informed. Clarity is resolution. To me, it is utterly heinous and rude not to provide this in any communication. Yet, to the normative world, the opposite is true.
There lies the distinct difficulty being autistic in a neuronormative dominated world – where our disability is invisible and has to do with a different paradigm of communication, sensing and responding to stimuli, rather than a visible physiological disability. Everyone now talks a great deal about access and inclusion, especially us disability advocates, yet, from my own experience in the field, working alongside other disabled people in the advocacy arena, there is very little in the way of access and inclusion accorded to me, to my being autistic. Mostly simply because I am so “high functioning” to them. Yes. I still feel the pressure to ‘perform’ social normativity – that is, to quote an old favourite phrase of mine, “performing the unnatural as naturally as possible” – in order to not cause friction, or be crucified. Many of us do such an exquisitely great job at this elaborate impersonation that we become burned out and overwhelmed, and then, when the meltdown point occurs, everyone reacts with shock and admonishment. It is as if the normative world is challenging us – in a jealous way perhaps? – and pushing us ever to the brink, and waiting to see us crash into the abyss, just so they can say, “There! I told you! Autistic people are incapable of social communication!”
I liken it (though it is a poor analogy) to making a wheelchair user crawl around while everyone else is merrily walking along, even advocating for disabled rights, never noticing that the wheelchair user actually needs a wheelchair, and then being aghast and surprised when the wheelchair user has had enough of scraping the floor and pleading for respectful accommodations, and thus suffers a mental and emotional breakdown as a result.
The “better” the “high functioning” autistic appears, the more the normative-minded world expects that ridiculously impossible feat of denying intrinsic autistic modalities while pandering to the magnificent exercise of taking on neuronormativity.
“OK, honey, we know you are autistic. Just keep it to yourself and don’t keep telling us about it, because we are unable and unwilling to grasp invisible concepts that rub against the fabric of our established ways of being. And heaven forbid, please, don’t have a meltdown in front of us, ok? You’re tough, you’re resilient, you have a PhD, you must stop acting like a spoilt brat demanding for this and that, least of all for actual honest conveyance of meaning (!!) and just get down to business as usual, like everyone else, like every normal human being. Nobody really needs to know truth, or clarity, or even details – it is just not a mature thing, nor is it a polite way to operate. OK?????”
This is why focusing solely on behaviour is rubbish at best and torture at worst. This is why hacking at outward mannerisms has driven and continues to push autistic people to ‘achieve’ the highest suicide rates among all sectors and sub-segments of humanity.
Mind you, I do have the good fortune of knowing people who have sincere and good intentions. I don’t directly blame them for not knowing how to interact with the autistic mind. But I want them all – yes, even the ‘good guys’ – to know that having to constantly, repeatedly, incessantly educate, elucidate, enunciate, illustrate and whatever else is terrifyingly exhausting. Gyrating stark naked and screaming the tiny little lungs out in front of the campfire of normativity is not exactly the autistic preferred way of being noticed or heard.
Is this an impasse, then? I honestly do not know. I speak for myself, of course, but I have said often that my autistic brain, my innate embodiment, just wants to withdraw from the normative world and go and live with dogs. Or animals. Or trees. Or anything that has nothing to do with human (mis)communication, expectation and demand to put forth an ostentatious, vigorous theatre show that they can applaud and praise you for.
Maybe I am “more autistic” than people realise?
How neuronormative are you? What flavour? A mild curry or taste bud exploding spicy?
Only Lucy knows the answer. And she is not telling me. Or perhaps the tables are turned, and I am the one not able to grasp her unworded wisdom?
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
I read this article about dogs and expressions of empathy, and my thoughts immediately linked to the empathy overload that many autistics report experiencing – feeling so much of the other person’s pain that one is frozen or implodes and unable to react in a way that displays gestures of comforting or soothing to the other person in distress. This gives rise to the misunderstanding by normative brains as the autistic person lacking empathy. (No outward display of huggy-kissy-aw-you-poor-baby stuff that non-autistics seem to expect and perceive as having empathy.)
This passage jumped out at me:
“During the task, the researchers measured the dogs’ stress levels. Sanford said dogs who were able to push through the door to “rescue” their owners showed less stress, meaning they were upset by the crying, but not too upset to take action. As for the dogs who didn’t push open the door, it wasn’t because they didn’t care — it seemed they cared too much. Those dogs showed the most stress and were too troubled by the crying to do anything, Sanford said.”
‘Taking on the mantle of pain’ so to speak. Lucy seems to do this when I have had meltdowns – she freezes and just stares at me – and somehow, because of this, I manage to self-soothe enough to get out of my meltdown state. I am brought back into the moment by her presence and driven by my empathy for her empathy to resolve my pain reaction, simply because I do not want to see her suffer from my suffering. Does that make sense? Dogs can teach us so much about our humanity.
Tumultuous ocean, churning depths. Underneath pomp, ceremonious circus, lies dark churning death. Extirpating the soul inside writhing grief, bursting through blessed gratitude too copiously applied. Such ponderous agony, ‘neath layer upon layer of colourful luxury.
Executive dysfunction is a very real phenomenon – not to be scoffed at. The veneer of steadfastness belies gritted teeth, foaming nausea, weeping silently, hapless, atop mighty pedestal. Who sets the heights, lengths, and breadths for performativity? The Autistic in a constant state of unstable flux – crushed, tossed, fluffed, buoyed, then crammed into discomforting contortions – seeks determinedly for clemency of space, breathing in every small fleeting moment, as if a last and final breath.
Too much struggle brings chaos to sensory reception – hyper senses become all the more acute, but yet bizarre in rhythmic jaggedness. The brain seems to switch off some signals, while others hurtle along as if out of control. A multi-dimensional existence, so markedly conflicting, it is a wonder that there are not far more collisions and collapses.
Demons screaming at the door, thinly veiled agony that nobody sees, nor ought they to be cognisant of in case of unknown, volatile consequences.
The family decided to check out this new (to us) dog-friendly place on Friday last week. We’d heard that they served really good local style food for humans, and we weren’t disappointed at all. Too many dog-friendly cafes fail at dishing out good quality human nosh. This one is one of the unusual ones, like The Tea Party at Pasir Panjang, but the great thing about I.N.U. is that they are very near our home.
Lucy was disturbed at the beginning by a small unruly Frenchie named Rufus with an attitude far bigger than his size. He rushed at Lucy, who was nicely settled in her own mat, pawed at her face and attempted repeatedly to mount her. Lucy got up, tried to back away but she was stuck in a small corner and began to look really troubled at the very first launch of this unruly behaviour. I politely requested his humans to please quell their dog – he belonged to a man and a lady, the man completely ignored my requests to remove the dog and did not even glance our way, while the lady came quite reluctantly to remove their dog – but this happened once, twice, three times, four… again and again and again, and they never once offered an apology.
Righto, dog people, here’s some frank advice: if your dog has this kind of problem, please keep him/her leashed, or crated. This is just simple, standard basic decorum. I mean, would you like it if I kept rushing up to you and shoving you in the face and climbing onto you, engaging you in ‘friendly’ wrestling match, when all you’re doing is trying to have a quiet meal in your own little corner? Why should dogs be any different in terms of invasion of personal space, why should my well behaved dog have to put up with rowdy behaviour, even if not aggressive but overtly, inappropriately ‘friendly’?
My poor gentle Lucy was becoming more and more agitated at the unwanted visits (every few seconds) from the dog, and so was I, almost at my wits’ end trying to stay calm and composed while keeping that nuisance away from my girl. Another thing about this kind of anti-social dog behaviour is that the big dog who is the gentle victim is inevitably blamed if their threshold to endure is crossed and the big dog retaliates. What would happen to the small bully if Lucy were not so patient, long-suffering and retiring, and if I had allowed my girl to be continuously assaulted in that way? Whose fault would it be if an altercation ensued and someone got hurt? It was not pleasant at all, and I was just about to enter into the ‘near meltdown’ zone, when suddenly, the manic intrusions stopped.
What happened was something I didn’t expect but was very grateful for. The overly rambunctious Frenchie finally disappeared from view. I turned around to look for him, and saw that someone had placed him in the elevated section near the cashier and behind a sturdy baby/doggy gate. There, within that confined space, I could see Rufus running amok, but at least he wasn’t bothering my Lucy anymore. I presume it was either Cindy, the owner of the cafe or the dog’s own humans who placed him there. Very thankful for that extra space for ‘time-out’, a most well thought out design of space by the owners of the cafe. Thank you, Cindy!
The other dogs there were very well behaved and we made sure our little curious Tiny was similarly kept in check. That is the way playgrounds ought to be, spaces where children can enjoy themselves, interact safely one with another, with adult supervision, and the same applies to doggy-play.
At last, we could focus on food and enjoying our evening. I ordered the beef tendon and brisket noodle, and the others had fried rice, pork ribs, and bak kut teh. This may seem like a tall order, but truthfully, every dish was delicious! The noodles were just al dente enough without being chewy, the broth aromatic and dark, and there was a good balance of beaf tendon, brisket and green veggies. I tasted some of mum’s fried rice, and although I am not a fan of fried rice, I don’t really like my food all mixed up in an indistinguishable mess, but this one was done right – the rice didn’t stick together in a goopy mass, the rice was lightly textured, and I was able to taste the individual ingredients quite clearly. I didn’t manage to take a photograph of the bak kut teh because my brother-in-law ate it all up rather quickly, nodding his head and making approving noises as he went. The pork was cooked perfectly, tender and the marinate zesty with a hint of spice. We had banana ice cream for dessert, but this wasn’t my favourite, as it was a tad overly sweet. Nevertheless, five big thumbs up from all of us (Nula, our helper too)!
Even Lucy eventually had fun – she decided it was safe to have a wander around after the rambunctious Rufus was removed from her vicinity, and got up from her mat to ‘mingle’ with the shorties (all the others were little ones) in her quiet, regal and slightly aloof way. Another delightful detail? The owner of the cafe has two lovely Shibas, gentle and perfectly behaved sweethearts with such adorable curly tails!
We shall return. Thank you for a lovely evening, I.N.U.!
Big anxiety at The BIG Anxiety Festival!
Some of this narrative was introduced in my previous post, about Food Markers, but this ramble here is a kind of variation on the theme, from a different angle.
This 2017 working trip has been fraught with dramatic ups and downs, and here’s my as-brief-as-possible review of the Grand Experience, months afterwards. Beware, ye grammar-sticklers, I do move rapidly between tenses, because I am unfolding the unfolding as I am experiencing it, in the now, in the then, and in the next. And that, too, is my Autistic Bunny Authentic Experience-ing. Continue reading
I spent the last few nights and days in this sofa, positioned right next to the loo. For safety, because I nearly fell down the winding stairs connecting to the loft bed. And for convenience, in case I had to throw up. A good thing I am short, but still, I have not laid down properly in a bed, stretched out, for this entire time. Continue reading
weight of the world
mired in fetid swirl
demanding bits bobs
pieces of my body
piece by piece
shred by shred
chat, chat, chat
listen to that
what do you think?
but most of all
BE VERY VERY VERY CLEVER
you’ve a PhD
all I want to do is just sleep
an angel’s trust
to win again?
a deafening thud
blow once dealt
cannot be rescinded
such horror this?
are made of folly
dear sweet angel
i have failed