Monthly Archives: April 2017

Lost … for words

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Written words are my metier and yet I seem unable to articulate what is happening with me with any sort of concision or focus. I think this is one of the reasons such a contemporary record as this blog is important for me. Not least because I’ve started drafting about two dozen different writings that I thought I might post here, but I lose control. I’m hoping the discipline of posting here will force a little theme and rigour into my thus-far random, rambling draft-scripts.

These drafts so far have all started neatly enough but they quickly veer off at tangents or fragment and scatter into a directionless wind. I think one or two of them might circle back and tangentially touch other of the writing-beginnings. But, of course, I want linearity and certainty and predictability. And this process of identifying, discovering a sense of self – my sense of self – as a result of learning I am an autist is none of those.

I have some near-certainty. Autism feels right. No problem there. I tick so many of the boxes. Well clearly I do otherwise I wouldn’t have been diagnosed. Doh. And I keep discovering I tick other autism boxes. It feels right pretty much all of the time … and I’m guessing (I’m doing a lot of guesswork lately) my spikes of hesitancy, of doubt, are because I will have to let go of everything about myself I thought to be true. That’s quite scary. More than quite. Fortunately there are occasional nano-second glimpses of exciting too. I guess (there I go again) that’s what is called hope. This gives me strength to put one foot in front of the other.

I’m certain I will feel as though I’ve “come home”. But retrospectively figuring it all out, re-configuring fifty years, phew, that’s another thing. I’m going to have re-categorise, re-file, re-index almost everything about myself I assumed had to be true. My absolute truths turn out to be not true. When truth and facts are at the very core of one’s being, that’s a tough lesson. On the other hand, it might be rather liberating, too. At least that’s what I’m hoping.

Here’s an example. It’s one of my biggest examples; I will undoubtedly return to the theme in more depth. It turns out I’m not stupid. I’m autistic. (I have two Masters degrees). I probably shouldn’t be surprised it’s really difficult to let go of an absolute truth (e.g. stupidity) one has been lead to believe, so deeply, that it has remained embedded, indoctrinated, for fifty years.  Stupidity absolutely has been my frame of reference (see first post) for fifty years. If I remove that structural wall, that underpinned foundation, will the whole house fall down? Does the whole house need to fall down? Ooh bugger, what if it does. Could I put up internal scaffolding while I gut and renovate? Or should I take out the precious internal fixtures and fittings first, (how do I know which are the precious ones, especially as my internal world is currently utterly disorientated?) then knock down the external structure and build new walls and roof around the fixtures and fittings? They’re very different scenarios.

Are there any rule-books / guidance notes on discovering one’s identity so late in life?

I am entirely confident that it will all make sense at some point in the future (though of course I want to have arrived at that point already). I know (though I don’t know how I know) my thoughts will become aligned, neatly ironed and precisely filed in categorised and alphabetised mental folders.  But just now thoughts, half-thoughts, realisations, speculations and mere wonderings are coming at me from all angles, and it’s sending my critical (ooh, that just ‘auto-corrected’ to crucial – yes, that too, thanks) analysis off into a whole another plethora of discombobulated directions. This is so far outside my comfort zone of linear, rigid, black and white thinking.

And something else … I hadn’t planned to write any of the above. That all just came clickety-clacking out of the keyboard.  I’d planned to tart up a part-draft about “permission” or noise-overload, or exhaustion. Oh well, there’s always next time… and the time after …

A risky first post … please forgive (at least tolerate ‘in transition’) my language

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I’d like to document, as a contemporary record for myself, my transition from alien-human to (formerly known as) Asperger. I’m struggling with transition just now. And I want to remember the process. If I don’t document, I don’t remember. Oh the irony of being diagnosed ASD and yet failing to have the exquisite memory that ASD folk are ‘supposed’ to have.

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.

Not disabled.

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?