We have the power to rebuild… #autism
July 7, 2017 § 10 Comments
I 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.
- 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.
- 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.
- 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…