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Hello and an introduction

This is the post excerpt.

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Thank you for coming by. I am a middle aged woman and I was diagnosed with ASD level 1 about 6 months ago. I have two children I shall refer to as H and D, both boys. H is on the spectrum and D is about to be assessed. I hail from The Land Down Under and I consider myself a jack of too many trades, and a master of absolutely none.

This blog is about me making sense of autism and untangling my messy life to get to a point where I can move forward more confidently. I sure don’t want another 40 something years like the ones I’ve had. Something has to give, and sadly, it is my beliefs, understandings and notions I’ve had of myself. When I turn to face my past, all I see is a lifelong series of faux pas, burning of bridges and serious social gaffes.

There is another medical/genetic issue my small family contends with – haemophilia. I am a mild symptomatic carrier and D is a severe haemophiliac. It is important I mention this because a lot of our antithesis approach to it is certainly coloured by our autism. You’ll see what I mean as I post more.

I’ve called this “kaption this” because I’d like you to make up your mind and bring your own ideas to my posts, and it is a play on names. An inside joke, sorry.

At times, my words may be out of synch and ideas all over the place. I am not very patient with editing, but I will endeavour to proof my posts for ease of flow, coherence, typos and to gauge my emotions to it. I may write, but delete it all. I’ll see. I’ll try to be more forthcoming than my emotions allow. Communication is one of my biggest issues when it pertains to my engaging with others.

Snapshot of issues I intend to discuss:

*face blindness

*difficulties in understanding emotions

*communication – written and my regular non verbal state

*physical clumsiness

*depression

*friendships/relationships

*childhood

*diagnosis

*where to from here…

An undisciplined mind

I am the first to admit my mind is an untamed bromby. It flits from idea to idea at a pace I sometimes cannot keep up with. Don’t ask me to speak, cease my thoughts or coordinate my body. If my brain is in flight mode, best to leave it be.

Attempts to discipline my brain have left me with a disdain. Loathing might more apt. My brain coped with the rigours and demands of conformity at uni, but only if it were a subject I had interest in. The closest my brain has got to being disciplined and responsive is through body building.

The repetition of each day and the exhaustion through starvation helped my brain deenergise and be humbled. It takes second seat to the functioning of my muscles and other organs. The downside is the hissy fits my brain has at its neglect.

So, I am now letting my brain follow its own needs, albeit in close supervision. My brain is jumping from idea to idea again. I am kind of hoping it will settle, eventually. Life doesn’t necessarily allow me the time, circumstances and finances to follow my brain’s whims. Just because I want to go to Japan to look at all the Ando buildings til my eyes hurt, doesn’t mean it is the smartest idea. Pragmatics enter the arena, dear brain.

Right now, I am flirting with philosophy again, playing with Russian tsarist history, dipping back into cultural theory, still avidly researching perfumes, deciding what sort of PhD topic on autism I might like to work on, wading into another committee related to trades, wondering if I might pick up a paint brush this year and humming about that bass guitar. I really do wish I could write and perform hip hop slam rhymes.

See? Too much. What I enjoy today, I’ll be tired of tonight and I just want to rest. My body begins to flop in the sheer effort of trying to keep up, but my brain says just a minute more. That minute throws me into disarray the next day. Tired, grouchy and anti social.

My brain and the rest of me are not in synch by any means. I can pretend in your presence that they are, but only for a short time. Then it all goes wrong. It feels like my brain is a short spanned 3 yo child. I watch energised autistic children running about, full of too much energy and I understand. They seem to be all over the place, annoying order driven parents and irking those standing in queues.

I thought being a mechanic, my brain would be quietened by the physical activity and happy to be working on problems to nut out. No. Didn’t last long. It is corrupting my efforts. It is demanding I let it have free run. Couping it up in a workshop with very little stimulation, tight deadlines and the same faces is detrimental to my brain’s health. It wants to be free. But I have bills to pay.

One problem is, left alone, my brain produces nothing of value. If anything, the frenetic energy just creates a whirlwind of chaos. Then there is debris to clean up. I see it in H too. He destroys a load of electrical equipment with no apparent purpose and then he has to clean up the ground. Pointless exercise in futility. He learns nothing, but releases pent up neurons. Try to focus his mind and it rebels. What to do?

I can see the sense in alcohol. A drunken state not only numbs the emotion, but also legitimises chaotic behaviour. Just a drunken night out… but behave that way naturally, it becomes frowned upon and seen as anti social.

Some have tried giving access to padded rooms, gyms filled with giant pillows etc. They remove the spontoneity of the act of dishevelled chaos. It becomes a political act of subverting my wildness. I become more inwardly tumultuous as a result. Same goes for H. It takes away his agency, and that defeats the brain’s purpose. To create order out of the über order, which reads to most as creating chaos out of societal order.

My natural state makes sense to my brain. The part of me that wants to fit in, abhors this natural, undisciplined state. People say autistic folk want and need extreme order. Yes and no. I need order when it comes to dealing with other humans and looking after my basic needs. Get me in a mental vortex of some interest and I forget I need to empty my bladder and replenish my water. Not good. I don’t need imposed order when my brain is out to pasture. And my brain hates being away from pasture. It flings off the attempts to subdue it and make it acceptable.

So, that is why I know I’ll always be poor. Unless my brain produces something of value by accidental fluke, it will never develop the discipline needed to see a project through and contribute purposefully to society.

The Mists of Avalon

Years ago, I read The Mists of Avalon. I took it literally. Travelling through actual mists to join a magical island called Avalon and be a sort of witch. No, darling K of 16. Not that at all. Far from it.

The Mists of Avalon is a highly symbolic expression of women coming into their power. I am sure Marion Zimmer Bradley had a very different world in mind for women when she wrote it. It is an Arthurian story, but told from very much a feminist perspective. In it, women are in tune and work with their inherent and immense personal power.

I feel like I FINALLY understand the mist. It is the social cloak we are forced to wear to make ourselves presentable to the public. It pressures women to forego their power and to suppress it. Coming into my own power is a parting of the mist, to present to me the inner magic I contain.

I am, sadly, a little like Guinevere; the uptight, but curious Englishwoman. I get glimpses of my inner self and baulk at the sight. But I know it is there and I turn towards it when I am calm and centred. I am curious and the mist beckons me. Unlike Guinevere, I know I’ll end up in Avalon. I KNOW it is my home.

I wonder…

I look at you and I wonder what you think late at night, when you are all alone. Do you wish you understood the world a little more? Do you snuggle into your bed clothes and hide away from the day’s troubles? Are you silently wondering why you were put on this earth? No. Probably none of these things.

I hear you and I wonder what you would sound like singing The Rainbow Connection. Your voice makes me think of early dawn and birds waking for the day; hope and something beautiful. What do you sound like when you cry? And what voice rises from you when you speak from your heart? I’ll never know.

I feel your energy and I wonder how much power you aren’t aware you have. Do you know you are a child of the universe, made of precious star dust, fused to make you, just you, as you are? I like to think that you know how precious we all are and how I feel when you smile. I feel you watch the world and think deeper thoughts, but you don’t know that I know. I wonder…do you?

A few steps back to take a giant leap forward.

There is this periodic tendency for me to sort of regress a bit. I liken it to taking a few steps back to then run and leap forward. As you might have guessed, the last month has been particularly painful and hideous. I guess pretty face does not belong in the gym, as grimaces and snarls mean I’m working hard. So, I must suffer the discomfort of shedding my skin.

What I am hedging about is what one of you mentioned in the comments of my last post. Now I am calmer and had a taxing work out, I can see the wisdom in what was stated. I am changing and the chrysalis period is painful. I know the next phase of my life is going to be remarkably different to the first half. I need to shed stuff, allow myself room to fly forward.

I do know all this. I just wish I didn’t rustle the feathers of those around me. I don’t intend to upset, annoy, disturb or hurt anyone. I am itchy and irritable at it all. I need to take things hour by hour for now, til it all peters out. The poison within will ooze out and be cleansed by nature. I’ll be ok.

I am ok. Just hold my hand, please.

What’ll it take to make me less anxious?

I admit it; by societal standards, I’m a neurotic, anxiety ridden worry wart. I know it. I own it. But it is not something I can rid myself of. Well, unless I dope myself with something to deenergise my brain. Sorry, not gonna do that on your account.

Yesterday, I let my very raw soul out for all to see. I really don’t think anyone I know in real life gives a toss. I am significantly more affected by it than anyone else. Kind of like the fat feeling self conscious going to the gym; that raw, vulnerable weakness. I have to learn that my vulnerabilities are no one else’s to care about. If others do notice them, it is simply because I am being an inconvenience or an annoyance. There is no knight in shining armour to defend my bruised soul. I have to keep up the energy to protect myself. It is fucking exhausting.

I do not know why I entertain the idea that people in positions of influence will care or lend me a shoulder. I have never had a shoulder and it is too late to begin asking for one. I’d probably bite it anyway.

People, emotions, societal rules etc are beyond me. I am no closer to understanding them than I was at 15. I can make analytic theories and critique when from afar, but put me in the mix and I find Russian makes more sense!

I am at a crucial juncture where I either do a last ditch attempt to grapple with people or I give in and become a hermit.

You’d think I’d be used to all this. That I’d have found ways to reconcile myself to my anti social ways and let hope die. Erm…no.

Over and out for now.

P.S. I didn’t even answer my question!!

Lots and lots of positive reenforcement that I’m ok as I am. That is what it will take. I have a better chance of winning a googleplex dollars before that happens.

Why do I care how others see me?

Two days ago, a guy at work I’ll call I1 asked me why I care so much about how others see me. It is simply because I have NO idea of myself in this soupy mess we call reality.

I agree with Descartes that I think, therefore I am. Sort of. I know I exist because in the epistemological understanding of human communication (i.e. thought), I fullfil the requirements communally agreed upon. The critetia set has me tick off all the boxes. BUT…

Outside of this very limited common knowledge, I DON’T know I exist. I am not grounded to this very limiting reality enough to know. Not on a physical level and not on an energy level.

My vocabulary isn’t really communicating the full force of my ideas, so I hope you are getting the gist.

I exist ONLY in this realm by virtue of being mirrored by others. The fact I  not them, means I am me. I am an entity of my own. Again, only according to the homogenous Western notion of us/them dichotomy. I am not even sure this is even a notion worth keeping alive. We may well be interconnected yet!

While we keep up this microcosm differentiation of me/you or us/them, I will forever be caring how I come across. I just don’t work this way. My brain has to do mental gymnastics to cope with this straight jacket of thought-being. People look in the mirror to see themselves and appraise and fix themselves prior to going out. I don’t. It does not occur to me to do that. My mirror is others around me. I don’t care how I am. You all do. So, you call my shots.

Think of a blind person playing soccer. He/she needs to be a jedi to play effectively. Or be told by others how to move and be. That is me in social life. Take me away from the stupid game and I exist quite fine. I am left to fumble alone.

While I am expected to play this munted game of life, I need others to mirror expected behaviours. That is how I learn. Wow. I think I’m finally finding words for it all!

When will multiverses become accepted reality?! I’m tired of waiting for others to allow my versions of reality to exist.

This reality is so constricting, painful and limited in scope. You can shove I think, therefore I am up your arse, Descartes.