We have the power to rebuild… #autism

Screen Shot 2017-07-04 at 21.04.57I owe a great big wet kiss to WordPress Discover Editor’s Picks for featuring my last blog post, For I am Human, on the 4th of July.

It’s brought me record likes and a lot of lovely new followers. Many have said what a beautiful poem this is – and I’m overwhelmed and surprised. It was written very quickly, but from the heart, which is the bit that counts probably.

The poem’s sentiment seems so blindingly obvious, and yet autistics everywhere know that it SO needs saying. But I’m encouraged by WordPress making the selection, and by all the positive responses.

Even more positivity flows from making something of an experiential breakthrough in the past weeks. Connecting with more autistic people online, and some in ‘real time’ is beginning to have a profound effect on my mental and physical state. I’m becoming truly immersed in an autistic culture and I’m energised in ways I barely recognise.

I’m learning how abundantly right my brain is.

I think this may also be a stage in the process of becoming.

Diagnosis and it’s aftermath was both wonderful and debilitating. Hindsight tends to brim with wisdom doesn’t it, and looking back there was a period of time spent unravelling – leading at times to something near paralysis. I felt trapped in a box of knowingness without any tools to implement my knowledge. The flat pack had arrived but there were no instructions.

There were also pockets of grief. I’d been given a golden ticket, yet I needed to mourn and let go. Overwhelmed by my isolation (being unknowingly autistic is extraordinarily lonely) I reached a natural hiatus – the lack of autistic playmates in my life was an unmet need I didn’t even know I had.

What soul crushed me on occasion, during my first year as an out autistic, was twofold – my revealed identity in the context of a lifetime, and of being the only one of me in the near vicinity. A vast sea of non-austistic humans seemed to swill around me who, however nice they might be, would never truly get me or provide the mirroring all humans need to develop shared identity.

I’ve come to think that being an autistic human can feel a bit like being constantly trolled. Non autistic humans don’t mean to, but by default the majority culture denies and rubbishes our autistic realities  – our inner truths and core perspectives. And this is pervasive.

We’re supposed to pretend and hide who we are to gain a basic entry pass, but stand on constant social trial – doomed either to erasure or failure.

Under these conditions paralysis can be understood, it would take any human extraordinary resources to find a way through. It also takes time to figure it all out.

And, if you’re conditioned to believe your brain is faulty, you can be forgiven for believing that this is mission impossible.

But I don’t think impossible has to be the final word – although spoiler alert – the ‘trolling’ ain’t gonna stop anytime soon.  The huge cultural shifts required to accommodate autistic perspectives are a long time coming, but that’s the big picture. I’m talking micro-climate here, and the ability to ‘rebuild’ our individual lives – which will feed back into the collective.

There are three points I want to draw from recent experience.

  1. Our exhaustions are in part sensory, and in part masking – and are cumulative. I’m learning that these may be lessened when we pass through post diagnosis paralysis and into rebuilding mode.
  2. Rebuilding requires direct immersion in positive autistic cultures. Access to this culture reveals a state of being in which we are not exhausted by human contact and sensory stimuli are more easily processed.
  3. Knowing who you are, knowing that you are exactly as you should be and there are others like you is the battery power we’ve all been missing out on.

Finding that there are others who are so very like me is like realising that my basic search engine is running precisely as it should. Within all our different ways of being autistic there is a core feature that is recognisable. Others will have said this I’m sure, but  yesterday as I strolled amid the honied buildings of my beloved Oxford, it struck me that we autistics are all running the same search engine and that our variety comes in the form of the different the apps which come with our unique model.

You can blame that image on my new phone upgrade – the other recent acquisition to put a bounce in my step!

Good news is, just like the Bionic Man and Woman – post diagnosis – we have the power to rebuild…




Published by soniaboue

I am an artist.

10 thoughts on “We have the power to rebuild… #autism

  1. Thank you, Sonia.

    I read your last blogpost, and this one too. I was (self-) diagnosed last spring being middleaged. The last post and this one are many words which I almost hugged while reading. “The autistic playmates”; “box of knowingness”… I don’t know where to start or stop mentioning text in the last posts that rang true to me in this midlife change. I am beginning to meet autistic people now and I realise, just as you, that I didn’t know how desperate a need for them I had.

    Love from Claus

    Liked by 3 people

  2. My goodness, I also didn’t know how fulfilling it would be to find more of my kind and interact with them. I always felt slightly separate, and not quite on the same page as everyone else around me and I certainly felt felt rather baffled by society and its interactions. Because I only knew my own internal perspective and it didn’t occur to me that other people experienced the world so very differently from me, but so alike each other, I never questioned that sense of difference and self containment. Then 10 months ago I discovered how very different I am, but didn’t know at that point how many others like me there are. Now I’ve found your ask

    Liked by 1 person

  3. Sorry, hit send at wrong moment. Meant to say, now I’ve found you all, it’s like coming home and that I’ve found my real family, my tribe. I can’t say that I’ve read an autistic perspective blog yet that I don’t identify with, and most of them could have been written by me. Well not quite, others say it so much better than I can, but the experiences and opinions and perspectives so completely mirror my own, it’s truly amazing. I also didn’t know how much I needed that contact until I found it.

    Liked by 1 person

  4. Another neurosibling starting out on a journey of exploration and discovery! 🙂 That’s something Patricia and I have discussed: how we are doing things we would never have dreamed of, learning and growing as openly autistic people at an age when this was the last thing we ever expected.

    We don’t know where the path might take us but we feel more alive and fulfilled since we took that turning and set out in our own direction. There are a few of us at a similar point in our lives and it’s wonderful to see the positive effect of such growth. I hope you will gain the same kind of fulfilment on your journey. Love to you xxx

    Liked by 1 person

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