prepotence

20190210_200601-broomstick

Propped up by a broom.

A huge ‘hidden’ but acute disability of mine is something that many autistics share: executive dysfunction. Teetering at the edge of a cliff, there is that sensation of falling, and yet one is still on firm ground – if just only by a hare’s breath. The feeling of executive dysfunction, of running out of what they call ‘spoons’, being at the very thin and slippery border, that unstable, fine line between (a veneer of) absolute control and complete breakdown, is a queasy, heart-rupturing silent scream. Sometimes, the tasks can be the most rudimentary, things that people just do, as naturally as any spontaneous activity like brushing their teeth or picking their nose. For example, answering multiple WhatsApp messages one after another upon emerging from a three hour meeting, without mixing up the who, how, where, when details of doing and saying. Then again, most people do not have to do all this while trying to quell gurgling, seething, frothing nausea, sometimes even excruciating migraine headaches and sharp stabbing pain in the eyes and inner ear, all from sensory overload. For the autistic person with executive function challenges, dealing with ‘simple’ chores can often turn into a battle with large roaring monsters, and staying on top of things becomes a colossal full-body, underwater wrestling match with an invisible Leviathan. For me, this is especially overpowering if ‘things’ involve many different human beings who are interacting in ways that seem to my brain to be alien, diverse, fragmented and scattered. The more human interaction is in the pot, the more cruelly exacting the grand performance becomes. Making mistakes is an inevitable and frightening feature in this unmerry-go-round. The ringing of the phone or the pinging of message notifications have become Pavlov bells of agitation and vexation for me. I have a horrible white-hot searing fear of sending messages to the wrong people, or not remembering certain details when people ask questions outside the ‘compartments’ in my mind that I’ve created for them. A person messaging me directly, taking a conversation outside a group chat but asking me questions that (in my mind) belongs to the group chat, can quickly send my brainwaves into wriggling, jiggling, wildly gyrating spams. I panic – why I do not know because it is not logical to panic – and of course I end up replying with either some garbled nonsense, or wrong information, simply because my mind has short circuited.

Even the most ‘expert’ of non-autistic ‘experts in autism’ fail to notice the subtle nuances of executive dysfunction and mental-sensorial overload as it happens in real time. In fact, I have yet to meet a non-autistic ‘expert in autism’ who can actually ‘expertly’ communicate with the autistic me. It is usually I who have to make all the necessary overtures – performing the unnatural as naturally as possible – in order to get any meaningful communication across. And autistics are supposed to be the ones ‘impaired’ in social interaction and reciprocal empathy?

This is how my autistic executive dysfunction plays out. On the surface, nothing is noticed. Not yet. There I am, deep underwater in the miry depths, engaging in mortal combat with that Brobdingnagian of Executive Dysfunction, but people sauntering by throw nary a glance at the pond, and nobody sees the tiny desperate bubbles bursting silently as they make contact with the aerosphere. All is cleverly concealed, until my spent and bloated corpse makes its way upwards, causing a huge blister on the placid surface. Then comes the shock and even derision. The accusations too.

People can be ‘aware’ that autism means a difference in neurological function. People can even be ‘aware’ of the terms “sensory overload” or “executive dysfunction” etc. But people have little or no idea how to identify the actual unpacking of all their ‘awareness’ in real time, especially if the autistic person is labelled by the non-autistic world as “high functioning” (not rocket science to figure out why I detest functioning labels, is it?). All this Autism Awareness with its fanciful labels is therefore as useful to me – an actual autistic person – as Blahblahblahdittydoodada. And this, while mildly comical, is not at all funny.

I’ve said this before and I’ll say it again. I am autistic. I love what I love with intense, all-consuming passion. And I am great at doing what I am great at doing – even rather brilliant. But I find the simple activity of keeping track of WhatsApp messages so difficult that I have developed a phobia for the sound of a message notification.

Prepotence in uncomfortable co-existence with decrepitude.

layers

100T3611-@zs

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.

function

IMG_6641-vintagelamp

I can do a whole lot of things, and superbly well too. But autistic executive dysfunction is a very real thing, and I need help with the simplest stuff, without which, I am unable to do all the marvellous things as marvellously as I can. Autistic persons need support, no matter ‘where on the spectrum’ we may seem to be. That is why functioning labels are harmful. Stop referring to us as ‘high’ or ‘low’ functioning, we are autistic, we are humans. Start trying to understand how you can support us to do the things we can do well, so that we can in turn help you do the things you cannot do well.

trundling along

This slideshow requires JavaScript.

We are almost halfway through September. The mind has been churning in frothy, heaving, cyclical waves. Anxiety grows ever more verdurous. I have no idea how I will pull it off, but the show must go on. It doesn’t feel all that long ago when I presented “Little Sweets” – but almost year has since passed.

As we trundle along, too many thought trajectories run through my mind, tripping over each other in a tangled mess of tentacles. This winter’s monumental feature has been the intense battle with sensory gremlins and physical exhaustion from the fight. I am extremely relieved that spring has sprung at last, yet wishing for time to move slower so I may achieve more as I stumble as quickly as I possiby can towards the finishing line. Continue reading

innocence in dreams

Another nonverbal day. The last few days have been even more of a struggle than usual. Is it even possible, without completely losing the plot? Yes, it seems so. I am still here. Still relatively coherent, very much alive (the pain tells me that, very clearly so), but in a surreal state of high-pitched silently shrieking fugal stretto. At the same time… oh no, there’s that Pina Bausch Le Sacre dance scene again! How do they all coexist? I do not know. They just do. It’s all ‘going on’ in there, a palpable, concretely physical unfolding in the abstract realm of my brain. Yep. Go figure. Continue reading

poco a poco

IMG_2263w

The Bung-Up Budget Breakfast

The autistic life is not terrible. Just very challenging. In fact, some days, the struggle is monumental and overpowering. But the wonderment is so glorious and beautiful, the thrill so resonant, I will not exchange it for anything less – even if it is a 5% compared to the 95% of struggle. Continue reading

network

Someone I was close to in my former life used to say that it is most important to engage in ‘networking’ – gathering around oneself a collection of useful people with talents and abilities that can render practical support, as well as appear ‘socially appropriate.’ Well, despite her having spoken with such disdain about my little motley collection of friends, comparing them most unfavorably next to her own ‘network’ of wealthy so-and-so types, she has now resorted to ingratiating herself with my eclectic, ‘socially inappropriate’ lot, after I walked away from the entire scene. I guess one such as her can never have too many willing hands to hold, ready ears to listen, and practical services to offer. That’s fine by me, really, if she is in such dire need for attention and affirmation, and if my (former) friends are unable to see the wood from the trees, she deserves them and they her.

I wish them all well. I have moved on.

Today, I am surrounded by wonderful people once again. Continue reading

crumble

Doggy biscuits. Beef bone broth. Dehydrated ribs. Freezer choking full of meaty delight. Senses overwhelmed. Body disintegrating. Collapsing in a wobbly heap on the floor, no tears, just dazed and faint. Fading, melting, leaking slowly down the sinkhole of executive duties, into the abyss of mocking dysfunction. Continue reading