I can, in my lucid moments, envisage a positive time in the future when I will e.g. be open/communicate about ASD. I seem to want to ‘do something useful’ with it. I am, after all, supposedly articulate, that must stand me in good stead if I can upskill myself in things-autism.
Until then, I seem to be struggling rather sensationally in the individual moments that make up the individual hours of each day. I know that if I keep hanging on time should do its thing of enabling one to get one’s head around a life-changing event. This is most definitely my plan, such as it may pass for a plan.
I know diagnosis shouldn’t really be a life-changing event. I’ve been like this all my life, after all. I haven’t changed one iota. I sought assessment … confirmation one way or the other regarding ASD. No-one made me do it. I must have kind of known they were going to say yes. The knowing, though, opens a whole new/different universe. For someone who’s distinctly, dogmatically risk-averse, this is kinda tricky, all by itself.
And so, a few months post-diagnosis, and I remain utterly dis…abled.
No longer ‘able’.
Now I try to define and explain, I am stuck … I am also de-skilled. Hmm – my lifetime’s frame of reference has gone, in an instant. It turns out I’ve been using the wrong frame of reference all my life, but it’s the only frame of reference I have. It is (was) the protocol, the skeleton, the scaffold, by which I judge(d) and assess(ed) myself, my skills, my very being, my place in ‘normality’.
Now, I am in quicksand. I am flailing in an ocean and I don’t know how to swim, let alone in which direction; I see no horizon on any point of the compass. There is no point of solidity, foundation (yet) on which I might begin to regroup, breathe – deeply, calmly – and learn.
‘Normality’ (and my lack of place in it) has been my frame of reference for fifty years. I know I’ve never fitted, always an observer, on the outside looking in, more than a little bemused and confused, and alone.
It feels as though I’ve been plonked in a foreign country (autism-land). Another metaphor. Autists doing metaphors, gosh, well there’s a thing. Autism language is different, and so is the alphabet, I don’t yet feel as though I even recognise the letters, let alone the words. I don’t know how to communicate (this is really challenging for someone who communicates by profession in the ‘normal’ world).
My inverted commas are of course deliberate, conscious. What I think, I surmise, I want, I need is some ‘transition’ language. Or perhaps time-limited permission to use the language by which ‘normal’ people speak of autists, whilst I learn the new (to me) language.
I know neurotypical is more accurate than ‘normal’. And that alone is reason enough to use it. I absolutely understand and get it. . To use ‘normal’ suggests that ASD is not ‘normal’. I really get it. But I’ve existed solely in ‘planet-normal’ for 50 years. It’s my frame of reference. I need kindergarten schooling (maybe pre-schooling?) in neurotypical and neurodiverse.
I need kindergarten schooling in other stuff, too. ‘Normal’ people talk of deficits, impairments, disabilities, disorder, for autism. Autists speak of condition, of strengths and strategies, and undoubtedly lots of other good words which I plan to learn. I hope to start using them too, soon enough.
But I do feel disordered. I’ve always felt ‘disordered’ (lacking order, internally chaotic, in near-continuous fight/flight/freeze). I’ve always known of, catalogued, my deficits, failures, inadequacies, stupidities …
… in my 50 years of using the frame of reference of ‘normality’.
There’s the crux. I absolutely know I need to build a new frame of reference. I’m not sure how. But I think in my period of ‘transition’ I may need to temporarily keep some struts of the 50-year old one, whilst I bang together some new beams and joists in a different shape. Amoeboid just doesn’t do it for me.
You see, it really does help to put things on paper. It solidifies thoughts, you can see them, read them, hone them, reference them and learn. Brainwave thoughts just disappear.
And starting to write a blog, surely, has to be en…abling, no?