Hot on the heels of my last post, this one is born of an absolute compulsion. A necessary response to the swell of emotion eddying the shores of its expansive comments section. Please do take time to read it. In turn it has both warmed and angered me, and broken my heart.
The size of it is one thing. Never has a comments section sprawled so extensively – not even for my best read post to date, Asperger Syndrome and Me.
The content is something else.
I call it a deeper pool. My words have conjured a deeper pool of unmet need than I could have ever imagined. Late diagnosed adult autistics have not been called the lost generation for nothing.
After writing it I travelled to London. Descending into the bowels of the underground system at Victoria I felt again that familiar lurch on the escalators. Cue vertigo. Cue headphones (useless against the dreadful cacophony – I will have to buy better). And cue the thought that since diagnosis I have lived the most cliched metaphor of them all – that of peeling the onion. Frustratingly I realise cliches are so apt often because they are so very true. Overused they lose in value. This precious onion feels too good for common currency, for as I gazed on and off (poor signal) at the comments coming in on my phone I FELT another layer slew right off. How to convey the new and totally naked sensation, the through the eyes of babes state I then found myself in amongst the insentient crowd?
As though pulling off a heavy woollen jumper on a suddenly sweltering day, I had removed one more layer of discomfort and confusion. That is how it is to be diagnosed autistic so late in life (at least it is for me). ALL your perceptions have been founded on a misapprehension – and you must shed them one by by one.
For the first time the true weight of my position – and that of my fellow autistics – dawned on me. Through the comments of others I was able to join the dots. The disconnect I experienced with my GP is a very much wider autistic reality. Not a one off, near out of body experience, but rather the ubiquitous blanket of neurotypical obsfucation we face en masse in the task of “translating ourselves” to the non-autistic world.
“Obfuscation is the obscuring of intended meaning in communication, making the message confusing, willfully ambiguous, or harder to understand.”
I use this word cautiously. It is not necessarily that neurotypical (NT) culture wilfully obsfucates autistic experience. It is probably rather the case that NT culture is blinded to it. There exists a real and highly problematic inability to see beyond the monolith of neuro-normatism. In one sense I knew this from all my exposure to autistic culture through blogs and friendships with autistic adults. My experience as a mother also taught me this. But here was a new form of data, which rendered me naked (so to speak) on the tube. My own fledgeling attempts to “explain myself” to my doctor had chimed in (profoundly it seemed) with other autistic adults. This was the lived experience of that which I had talked about so often with my friends. To live it is to truly know it.
So I’m now caught between two poles of reaction. On one hand, I blink in wonder at how I could have been so naive to expect otherwise. On the other, I shake my head in disbelief and fail to see why it is not possible for other sentient beings to grasp my situation, and that of my fellow late diagnosed autistics, as a delicate and extraordinarily emotionally complex thing. Further, ours is a life long condition – so where is the adult support?
It is almost as if, because we’ve seemed to cope thus far (or rather remained under radar) it is considered possible for us to sink back into our pre-diagnosis invisibility. But it’s just not like that from within. Diagnosis (self or official) is a Pandora’s box, the lid can never be shut again. Invisibility is not an option unless it goes by the name of erasure. For that is what it is when you acknowledge the existence of but then ignore a people.
I’m a newbie, so it behoves me to be perplexed, but I believe it is utterly bewildering that our condition post-diagnosis is neither acknowledged or understood.
Resoundingly I found repeated and repeated in the testimony on my blog that NO, there is no such understanding, no conversation, and no provision. Support for adult autistics just doesn’t exist.
Abruptly I dislike my metaphor. Onions make me weep. I tunnel my way giddily up and out into the busy street. This was not a good sensory day and a powerful gloom descends of the kind we do so well in England. The British weather is treating me to a full menu – coat on and off, umbrella up and down. Jumper round my waist and then pulled back over my head. And worst of all grey, grey, grey.
I think some more about the deep pool as I make my way home. I’ve had enough of London and just feel so awfully sad for the crushing isolation of my people.
For all my struggles with the world I have enormous privilege and joy. I am an autistic person, who can navigate aspects the NT world – I’ve been conditioned to it all my life. My difficulties stem from living in an ableist society and the overwhelming denial of my autistic experience and of my needs. I’m exhausted at the effort it takes me to be NT spaces, and battle the daily assault of the unpredictable sensory world. I don’t diminish this struggle but I do recognise that I am lucky.
With privilege comes responsibility.
So I will keep writing.