One year on …

[TW: suicideation in par one (only)]

I’ve been spending the last few weeks aware that my diagnosis ‘anniversary’ is approaching, and wanting to document the moment. The year has been challenging, actually let’s not euphemise, bloody difficult, in so many ways, with deep bouts of suicideation. But I’m still here, and there have also been positive trends. I want to acknowledge those positive things to myself, to prove I’m making progress. Marking them in black and white should do the job.

Actually, marking them out FROM the black, sometimes enveloping black, will hopefully do the job.

I’ve spend all month trying to think of three things. Rule of three. I like this ‘rule’. We autists don’t have a monopoly on rules – this one is known and used widely: speeches; writing; the lowest number of stuff to form a pattern; the triad of impairments …ha, ha, so it is useful for interacting. [Aside: I still reckon DSM5 diagnosis is a triad: (a) social communication stuff (b) rigidity and repetitivity stuff (c) sensory stuff — they’ve just mis-organised it into two categories].

Anyway, my rule of three has failed. I’ve ended up with four. Which means I must be doing better than I think.

  1. I’m allowing myself some recovery time. I always knew, without knowing why, I would end many of my days largely immobile/comatose on the couch, incapable of anything very much. A compulsion, one that I was unable to counter. Just so I could get through the next day. And the immobility was an opportunity to chastise myself and prove my worthlessness to myself. Because if I wasn’t utterly useless, stupid, a failure, I’d get up and do stuff (chores, productive, creative stuff, socialise, hobbies etc). Nearly a year on, and allowing myself recovery time, I have a sneaking suspicion that my general, overall exhaustion levels may be down a couple of notches. This would make sense. Allowing recovery time means I can relax into it, let it work. Previously I’d still have to do nothing, but would also be rigid with the tension of social and productive failure, i.e. not going out on a Friday or Saturday night. And not doing productively useful stuff either. Which was not greatly conducive to actual recovery.
  2. Turns out I’m not stupid after all. I still feel stupid a lot of the time, but I occasionally catch myself almost believing this one, i.e. I’m not stupid, then I need to cognitively acknowledge to myself and remind myself – yes, you’re not stupid, you’re autistic. What’s actually going on are social communication issues (despite knowing a large vocabulary and being articulate), and slow(er) processing capability (not stupidity or inability to understand / concentrate / follow instruction / remember), and sensory issues, hating crowded, noisy, smelly, person-to-person bumpy places (not being incompetent, stupid, useless etc).
  3. Turns out I’m not an utter failure either. As in, if I wasn’t a failure I’d have been successful in my career, in my income progression, in my personal and social life. Ditto the conscious, cognitive self-acknowledgement of this one. Okay, the facts are: I have scrabbled around the edges of my profession; my income is far from what it ‘should’ be for my age/skills/length in my industry; my personal/social life is severely restricted. But – now – in the light of diagnosis, I have to cognitively acknowledge I’ve probably done flipping well considering the difficulties I have, and those I have to face in an NT world. I work. I financially self-support. I do have half a handful of handsome friends, for whom I’ve always been grateful (if usually a little bemused as to how I managed to achieve them, let alone retain them).
  4. I’m just beginning to tease apart the mental ill-health issues from what is autism. I just thought I was totally, utterly crap (see numbers 1 to 3). Full stop. Decades of not improving, not ‘getting better’, not fitting in better, not making more friends, not making career progression, not knowing who I am, for all the trying to fathom and be what everyone else is. It’s definitely taken its toll on my mental health, and probably my physical health. I’m so pleased mental health is an Autistica top ten research priority. This is the one I’m stuck grappling with at the moment; I may still be grappling with it next year. It’s a biggie (not that the others aren’t also). But I begin to think I can feel the occasional tremor of shifting bedrock in the deepest foundation of my being. Not quite managing to grasp hold of much yet, though. But the idea exists that the aforementioned worthlessness etc – for sake of brevity – is due to mental ill-health issues resulting from decades of undiagnosed autism, not from autism itself.

I’m hoping not being quite so constantly, persistently, negatively critical will expand into beginning to learn I’m not to blame for everything (in my sphere of contact, not everything such as war, disease, poverty, etc). And maybe learning that I’m not always wrong (even when I’m right). I recognise overturning a lifetime of self-blame, criticism, profound self-loathing, worthlessness etc (oh, the et ceteras) is a difficult mountain to climb. But the only way is up. (I feel sure there’s an amusing pun there somewhere if only I could find it).

After half a century of failing, and miserably failing, to be ‘normal’, I am beginning to learn to be autistic. I’m taking my first tentative, toddler steps. And of course, I can intellectualise, learning to be autistic inevitably will mean learning to be myself. I’m just going to pause for a minute and let that sink in to my mind … I’ve said for as far back as I can remember that I don’t know who I am, I have no sense of self, no self-identity. This seems quite important … I don’t know how long it will take, but I may yet find my self-identity (tautological?)

On reflection, maybe I’ve come quite a way in a year.

Masking, camouflaging, passing

In my early pre-diagnosis autism reading I began to think in terms of myself becoming unmasked (before I became aware of ‘the lingo’), my hitherto coping strategies disintegrating, as I dealt less well with the daily exigencies of existing.

In other early reading on autism I was confused by ‘passing’. We pass exams. We pass ‘go’ (Monopoly … an attempt at humour). In the USA we die (how do autists even exist in the USA with that cultural need to euphemise? I’m digressing already, with another attempt at humour). Anyway my cognitive translation goes: pass …exam? No. Am I reading a USA writer … dead? No. Working really hard to exist in a neurotypical world? Ah yes, that context seems to be the best-fit, given I’m reading an autism article, not an obituary or school report. The point is it takes actual time to go through this process. I’d always just thought I was a uselessly slow reader. (It’s quite revelatory learning about oneself when one’s been an adult for so long already; a weird sensation. I may even eventually arrive at a new mantra (from many aspects) … not useless, just autistic. Actually that would be jolly nice if I could achieve that).

Back to this post. At the beginning of this month I read Seventhvoice’s throught-provoking article. I was immediately concerned about my use of the term masking. I know myself to be ridiculously truthful, incapable of deception, dissembling, dishonesty, dissimulation. I know I don’t lie. I like precision and accuracy. Some might say pedantry (and I’d view this as a compliment). Even the vaguest suggestion that my use of ‘masking’ was somehow not accurate, wrong, sent me scuttling into (further) self-doubt and reprobation.

Inevitably, I quickly went to one of my automatic first ports of call and confidence – the dictionary. I was immediately relieved to be reminded there is more than one definition of mask.  Yes, a mask can disguise/conceal. But a mask also protects (gas mask, diving mask, surgical mask, face mask – cosmetics, masking tape – protecting a surface when painting). Like my cognitive analysis of ‘pass’ to find the best fit scenario, ‘mask’ too has different interpretations according to context.

I’ve happily returned to the comfortable state that I’m using ‘mask’ in an honest, protective, clean and accurate way. I’m no longer fretting I might be a liar. My honesty and integrity remain intact. There must be loads of words in the English language that have multiple meanings which are only revealed in the context of the other words around them. These are just two of them.

The bottom line is, for what it’s worth, I don’t see a dichotomy between masking and fitting in. Or trichotomy if one includes the word camouflaging of this interesting article on the subject. In order to fit in as best I’m able, I need as much protection as I can muster. Masking, camouflaging, fitting-in. I think they’re simply synonyms in autism-land.  A trilogy not a trichotomy.

In the article, camouflaging strategies are said to comprise those that “may include hiding behaviours associated with their ASC [ASD], using explicit techniques to appear socially competent, and finding ways to prevent others from seeing their social difficulties.” In other words, doing our very best to fit in when interacting with the neurotypical world.

It’s all the same, no? Isn’t all of this just called wanted to be accepted, in whatever environment (work, social) one is in at any given moment, and doing the best we can to maximise the likelihood of achieving that?

My masking/fitting in/camouflaging works well enough in public (mostly). I know I’m on the edges, eccentric and easily-excepted, but I’m lucky to be good enough at my work to be professionally included (hmm, mostly). Without a mask, well, too eccentric? too direct? too pedantic (I know, such a thing is impossible). I earn my living in the NT world, so I am compelled to fit in as best I can. And I want to fit in as best I can. I need positive human interaction. However, I also know the costs of masking, of fitting in, of camouflaging, are large, and are paid in private (mostly).

Indeed, is it possible that the consequences of masking/fitting in/camouflaging, are the more important thing – the exhaustion; stress; need for recovery time; risk of meltdown, shutdown; the knowledge that we haven’t really been terribly successful at masking/fitting in/camouflaging? We read that (many?) NTs find social, emotional, verbal and non-verbal communication environments entirely intuitive, automatic. But for autists the conscious, cognitive concentration required to scrabble at the edges, pick up partial pictures, know there’s stuff you’re missing but not know what, is where the toll is taken.  That, and knowing that every day will be a groundhog day, i.e. no amount of practise will improve the success rate, it’s just the way we’re wired.

Post-truth society

I really worry about living in the recently-monikered ‘post-truth world’.

Oxford Dictionaries’ ‘word of the year’ 2016 is “post-truth” They define it as “relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief.”

I reckon this makes it a really bad era for autists. Not only do we have the challenges of living in an NT world. Now we have to add in living in a PT world (attempt at word-humour).

Facts are our currency, no? We deal in facts; well I know I do:

  • The black and white
  • The literal
  • The absolute
  • The right or wrong, with nothing in between
  • The honest not the dishonest
  • The truth not the lie, nothing in between
  • The precise, and precisely bounded. No blurry edges anywhere
  • The objective not the subjective

It’s already hard enough trying to figure out what people are saying and doing when they’re being vaguely honest and truthful. Yet, for the past several years I’ve noticed that absolutely truthful facts (and I know that’s tautological, but it seems to be necessary now) appear to be becoming less important.  Not that facts no longer exist. But the focus of communication, media, is increasingly on stories, and the moods of stories, and the personalities of both the stories being told and the person telling the stories. Facts are fading. Well, and sometimes facts don’t exist at all. I can’t do that.

I don’t really know how to do the colour-, mood-, emotion-, imagination-creating story-telling. As a communicator/writer, I feel as though I’m being de-skilled because (a) I’m no personality, I’ve always said I let the quality of my work speak for me (this takes on a new resonance post-dx) and (b) I work with (truthful) facts. I can’t lie. Which I like to think of as a strength, though it too, comes with personal costs.  I can only write (truthful) factual stuff. The very fact (ha, ha) that I need to put the ‘truthful’ adjective in front of fact, shows how far removed the word ‘fact’ has come from its correct meaning.

Fact, fidelity, falsity, fantasy, fiction: Journalists used to be reporters, reporting the facts. Yes, okay, the reputable ones. Now journalists are personalities too, and they opine, sometimes endlessly (I feel). How are we supposed to know precisely the point at which they switch from reporting (facts) to opining (not facts), and back and forth in one piece/package?

How do we know what we’re reading, hearing, watching is reportage, PR-gumph, marketing-spin, political-shenanigans? I really struggle with the “docu-drama” genre. How are you supposed to know which bits are truth? You know it’s “based on some facts”, but that’s all. At least some books give you a clue near the bar code: “non-fiction”, “fiction”, or some other category.

I valued reading Tim Harford’s article “The problem with facts”. He writes “The link between cigarettes and cancer was supported by the world’s leading medical scientists and, in 1964, the US surgeon general himself. The story was covered by well-trained journalists committed to the values of objectivity. Yet the tobacco lobbyists ran rings round them.” Science deals in facts (hmm, usually, let’s not go there today). Yet lobbyists and spin doctors do wicked things to the truth and make it really hard for anyone needing truth and honesty. Not just autists.

Facts are not just facts any more. Alongside post-truth we have “fake news”, “alternative facts” and the like.  But facts are true. Oxford Dictionaries define fact as “A thing that is known or proved to be true”. So I am right … it shouldn’t need a qualifying adjective. The very word ‘fact’ is being tortured into false confessions.

Anyway, I’m just saying really. Life was already confusing enough. I find the post-truth world is significantly more challenging.  I try not to decrease the size of my world, shrink it to a place I know is true. It’s not easy though.

Permission

This might all be a bit speculative, a bit premature, but I wonder … if I document it … might it become real, tangible, even in the act of writing.  It might be a bit speculative, but I’m not documenting anything that isn’t making sense, feeling a bit like pennies dropping, things slotting into place.

I’m wondering if diagnosis has given me permission.  Permission to be. Permission to express the things I’ve expressly denied about myself because it meant I didn’t fit in (etc., etc.) Permission to say that despite a normal upbringing, I’ve found existing – by neurotypical parameters of measurement – to be a most troublesome, sometimes too challenging, too difficult, an occupation.

Does diagnosis finally give me permission to speak, live, try to reach my potential – that thing that school teachers repeatedly said I was not achieving?

Exactly what permissions do I now have? Well … let me enumerate:

  1. I have permission to no longer judge myself, measure myself, according to the criteria of normality that I was brought up to believe are the ones by which I should judge myself (to be fair, pretty much the only ones anybody knew, back then).
  2. I have permission to liberate myself from these constraints. Okay, I have to live and work in the NT world, and so I behave as best I can when I abut that world, but it’s not my natural habitat. It’s never been my natural habitat, and I’ve never understood why not, nor where I thought my natural habitat might be. Lo and behold, post-diagnosis, I have directions to what is undoubtedly my natural habitat. This is what is liberating. I no longer have to assess myself by the criteria I’ve used all my life. They’re not the correct criteria for someone with a brain hard-wired the way mine is configured. This is not to restrict, or limit, myself. But maybe, just maybe, after decades of trying – and failing – to be better, fit in more, improve my social skills, improve my people skills etc., I now know I’ve been starting from the wrong place, the wrong habitat. None of those attempts have worked … indeed my decades’ old mantra of ‘”I have no learning curve” begins to make some sense if I’m hard-wired this way, rather than merely utterly useless at learning and improving my personal, social, situation.
  3. I have permission to start learning from the right place, the right habitat. I’m reminded of the joke where a stranger in town asks a local person for directions. The reply comes back … well I wouldn’t start from here if I were you. Clearly I’ve been trying to learn/improve/fit in etc etc from the start point of ‘neurotypical’ (failed, repeatedly). Now I get to start learning/ improving/ fitting in etc. from the correct place of ‘autist’. This is actually quite exciting, now I write it down.
  4. I have permission to speak. To speak about how sometimes unbearably difficult it is to get through any single day. The plenitude of daily inadequacies and worthlessnesses I thought were shameful so would not speak of them. At one point towards the end of my ASD assessment, the assessor said something like “you’ve done really well to get this far, given all your difficulties.” I have permission sometimes to say things are quite tough. This is a bit big.
  5. I have permission … to experience, rather than to deny, quash, (at least in public) what I now know are my autistic traits. Those behaviours I used to think were me being weird, quirky, odd, eccentric, dogmatic, inflexible etc., and that people were tolerating, to be kind.
  6. I have permission, in short, to be autistic. In the few months since diagnosis I’ve already noticed some changes in my being:
    1. I make less eye contact. I’m not forcing myself so much to make so much eye contact.
    2. Rather than absolutely stopping myself, I’m allowing myself to express a little more of my literalness. In what I hope is an amusing fashion.
    3. I’m chastising, criticising, condemning myself a little less for ‘being antisocial, unfriendly, unfriended’ when I’m home alone on a Friday or Saturday night.
    4. I’m accepting more (condemning less) that taking time out to recover is simply essential. I have no problem taking ‘recovery days’ in a running schedule. I’ve decided it need be no different taking ‘recovery time’ in an autistic schedule. I notice I’ve even started calling it ‘self-preservation’ time. Just time to recover from the rigours of existing and working in an NT world.
    5. I’m even beginning to acknowledge (rather than berating myself for uselessness, inadequacy, stupidity, “oh, just get on with it, you stupid woman”) that some basic functions are just really hard e.g. public transport, town centres, anywhere with lots of people, anywhere with lots of noise, or even a little, but unexpected, noise.
    6. I have permission … to be myself. Whatever that may evolve to be. My only sense of self to this moment is negative, so I’m rather hoping myself isn’t worthless and inadequate. But there has to have been something lying dormant all this time, waiting for an opportunity to flourish. Surely? At initial sight, permission to be myself is rather shocking. Both from the perspective of loss, and waste, wasted time, a life not lived; and also from the perspective of potential. I may yet get to try to be the sort of person I’d like to be. And I’m finally starting from the correct place/habitat to reach my potential.

I know it’s not too late to teach an old dog new tricks … with patience, consistency, and the right kind of training.

I may well find there are other permissions I now have. My journey is already looking brighter.

Lost … for words

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

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?

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