Saturated – losing my mojo, & the question of embodied existence as an autistic person.

STU_1404DPP4_001

Photograph by Stu Allsopp 2018

Don’t bother reading this. Yes – probably this blog post has been written before. Possibly even by me? I’ve written so very many posts since my diagnosis that even I can’t keep up!

Deja vu, reinventing the wheel, this is what comes to mind when I hit the web these days. Voices that have been silenced for a lifetime are compelled to speak, and in so many ways blogging is the perfect mouthpiece.

But I’ve become weary about sharing my life online.

Suddenly – as I approach my two year diagnosis anniversary – the plane is tanking. I’m not giving up on activism. There’s probably just a limit to how long a person can keep going without burning out a little, or even getting burned (which indeed I did in 2017).

Also there is overwhelm. It’s brilliant that the blogging scene keeps mushrooming – but it’s also that much harder to keep up.

And frankly ‘the autism conversation’ can feel a bit Kafkaesque these days. Working to counter prevailing narratives is a hamster wheel. The more you repeat the mantras – not broken, not a puzzle piece, not ‘with autism’ – the more they seem to come back at you.

It can feel like no one is listening – the majority aren’t. Perhaps they won’t or maybe they can’t? This is a question which troubles me greatly.

Yesterday – because my grasp of language is slippery – I found myself looking up the meaning of the following two words.

halfling

undead

Realising quickly that I was out of my depth (I don’t really get the genres this language belongs to and I’m keen not to give the ‘aliens’ trope any additional help). But I am left with a craving for a vocabulary to express the inability of non-autistic humans to see us as we really are.

In the double empathy bind Damian Milton describes a difficulty in the communication process which originates from both sides of the ‘neurological divide.’

But I’m left wondering one thing. If I am human (and I am), and if other humans can’t see me as I am, what does this actually mean in terms of my embodied existence?

Why so difficult?

Cleary I’m struggling to identify a feeling. A feeling of being, and yet of not being – a lifelong sense of alienation and wonder(ing). At the weekend I momentarily toyed with the idea of being a replicant. And then thought about it in reverse.  What if everyone else was a replicant in this warped narrative of othering? Hah, see how you like that!

Personal truth and authenticity seem to be at the heart of this – along with an uncanny sensation of a shift in time or space between us; a parallelism of embodied experience in which we can’t quite sync enough to grasp the nuance of the other.

And then I get it. No-body actually ‘gets’ anybody else (no matter how close they might feel, no matter how much or how little imagination they might possess). Surely all people really do is transpose their own experience onto others, period? If the embodied experience doesn’t match you have to try harder and ultimately take a leap of faith because you want to. (Tell me if I’m wrong.) I feel that the extraordinary writer Carson McCullers gives us a piercing window on this phenomenon in her debut novel, The Heart is a Lonely Hunter.

This goes for us all and – simply put –  among autistic people there can be a much easier fit, and a higher chance of matching experience from which to form a bond. But it’s never a given.

You probably have to feel invested enough, and be willing to go to new places inside yourself to ‘get’ autism as a non-autistic person. You might even have to be prepared to lose your moorings (as autistic people have to among neurotypicals) in order to find the empathy g-spot?

Most people perhaps wouldn’t do this by choice. They might fear never getting back to themselves again (welcome to that one).

I don’t mean to say that there aren’t any neurotypical people who’re willing or able to do this, and do it while also holding on to their own boundaries (this last bit is very important). And god bless those who go for it and succeed. We love them.

But what I do think is that our daily efforts are largely a blank to most people, and the intelligence behind our multiple coping strategies is overlooked. All that’s often visible is the ‘getting things wrong’. Ingenuity, inventiveness, resilience and the sheer courage involved in managing our lives is an unseen entity, and indeed a valuable resource. Neurotypicals could learn as much from us as we are forced to from them.

But I’m beginning to feel it’s not my job to keep saying so ad infinitum. So I’m keeping schtum for a while. I’m not leaping about and waving banners, not until I can work my way through the sinking feeling that I need to try to be effective in other ways.

Ah, and I bet this is another staging post in the late diagnosis journey of becoming. In fact I’m almost willing to put money on it. At the very least I’d like a change of scenery from the hamster wheel.

I’ll still be working behind the scenes, but I’m good with quiet for now.   

 

 

 

 

 

 

Published by soniaboue

I am an artist.

20 thoughts on “Saturated – losing my mojo, & the question of embodied existence as an autistic person.

  1. I think that the journey to self discovery and self acceptance is a long, winding, pan-dimensional experience for many late diagnosed autistics. It’s two steps forward, one back, one through a trans-dimensional portal, three up, six on a new planet and four back to the step before you began.
    And some of that complex journeying to ourselves is so long because we recognise and are reminded of our ‘otherness’ so often, in so many, many ways, big and small.
    So who are we? Are we even human? Are we extra human? Are we a side order of human?
    It’s very complex and naturally needs time and space to unweave, understand.
    I hope you can find that space.
    x

    Liked by 5 people

  2. Thanks again for baring your soul and vulnerabilities Sonia. It seems to me your journey is very typical of anyone, autistic or not. We all strive to know ourselves and yearn to be truly understood and accepted for who we are. And I can imagine there might be extra challenges for you. I’m learning from you. And being quiet, working on ourselves rather than trying to change the world is usually the most effective approach. Enjoy your quiet crusade. blessings, Brad

    Liked by 3 people

  3. Reblogged this on Aspie Under Your Radar and commented:
    “… what I do think is that our daily efforts are largely a blank to most people, and the intelligence behind our multiple coping strategies is overlooked. All that’s often visible is the ‘getting things wrong’. Ingenuity, inventiveness, resilience and the sheer courage involved in managing our lives is an unseen entity, and indeed a valuable resource.”

    This is the story of my life, lately. Non-autistic people don’t have a clue — and why should they? It’s a rare neurotypical soul who can put themselves in our “shoes” and really imagine what it must be like.

    And it’s not just about imagining how horrible it must be, but also how amazing it is… and how much we have to offer. Sometimes I think we’re living in a parallel universe, and since by definition parallels don’t intersect…

    Well, there you have it.

    Liked by 1 person

    1. Really enjoyed reading this. I relate for sure. I like your point about the parallel universe. You’re right – they don’t intersect. Hmmmm, more to think on.

      Liked by 3 people

  4. Don’t stay schtum for too long. What you say is helping me.I have only just discovered why I have never ‘fitted in’ and at last have found a whole lot of people just like me. Now so much makes sense and I have bloggers like you to thank for it.

    Liked by 2 people

    1. Thank you Lesley – and congratulations on your diagnosis 🙂 I owe everything to bloggers too, & thank you for the encouragement 🙂 Knowing me I won’t stay quiet for long. Good luck with this stage of your journey. S

      Like

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