“And they shall drive thee from men, and thy dwelling shall be with the beasts of the field: they shall make thee to eat grass as oxen”
It has been two weeks since I received my diagnosis of Autism Spectrum Disorder (ASD), one if you count the subsequent confirmation of my behaviour by the doctor with my partner. In all matters I am currently heavily aware of this elephant in the room, and I feel my legacy of inadequacies chasing at its feet.
I am autistic.
I am an autistic person.
I am a person with autism.
I have a developmental disorder called ASD.
I am Aspergic…
…and so on, navigating the acceptable descriptors that don’t describe all of who I am, while the person that has for forty-six years darted around my scaffold like a clown fish guarding its reef knows that who I am (to be) hinges on the meaning in those words. They are a relief of sorts.
I had been looking at this possibility for months, perhaps a year. For several years prior I, partly oblivious, had been given some gentle hints by a kind individual with some experience in this area. Eventually one of the hints took, and I began to look, and some things resounded, and before diving further I asked my careful friend the question: “Were you hinting?” [These are of course not the precise words – I would not be me without paragraphs where a sentence would do]. And she said, “Yes”. [she said more, better, kinder, gentler, cautiously, but, “Yes”]. And so I dove deep.
With each flurry of investigation I unmasked more of myself – behaviours, gifts, quirks, faults, unaccepted blame, causes, reasons – and uncovered more forgotten memories – little tragedies and comedies that we write in hindsight and live through oblivious to the narrative – and reached a wall rising in front of me. Self-diagnosis is a field of foot-traps, and would never satisfy me, who has a need for formality and qualified assessment. Which eventually, after much procrastination, sent me to Sydney, and confirmation of ASD.
One thing that gives some potential for relief is the possibility that my experience with chronic depression and anxiety for much of my life may have been at least partly as a result of ASD, perhaps exacerbated if not caused by not having that diagnosis, though I was born years too early for early diagnosis to be possible (and so likewise for it to feed the temptation of regret). Having the diagnosis actually kind of validates some of the negative feelings and thoughts lived in the midst of my depression and anxiety, and yet, because of that, simultaneously has some kind of inoculation value to these illness-bred thoughts: fear and despair at difference, at social shame, at my broken machinery and misaligned cogwork, at indecipherable codes, manners and meanings beyond my ken… alone in drowned woods deciphering the disappearing flicker-whispers of will-o’-the-wisps for… or just alone.
Aside from that, there was and is some relief in the notion that the sense of unreality and depersonalisation I constantly feel may also be a product of long-practised conformation of my character (as opposed to its innate adoption) to what I’d observed as being “normal”. This conforming, rehearsing, scripting, “acting” (if not completely conscious, having by now become “muscle-memory”) subverts both what is real (“all the world’s a stage”) and my innate differences, my concept of self (I am merely a player on the stage). But I did not until recently know this (that this is not normal) because, as I frequently said during assessment, I don’t know what I don’t know.
It sounds a bit twee to say that relief was mostly found in the possibility of being an actual “me”, but the $64 question is, what does that actually mean and entail? The psychiatrist unfortunately agrees with me – that this is the $64 question (though she added that knowing the question is far, far better than not knowing what I don’t know, and she is right). Diagnosis is good, but also like being, well not even at the base of Everest, more just stepped on to a landing in Kolkata having taken half a life by lazy boat to get here, with the sudden realisation you had to, wanted to, climb a really big mountain.
“and he was driven from men, and did eat grass as oxen”
I sometimes, well mostly always, have felt misunderstood. I know this is probably a universal feeling, but now, with that mid-life, medical diagnosis elephant-in-the-room, I think this feeling might be partway valid in a different form to the “neurotypical” feeling: I am misunderstood, or had people wary of me (Peter frequently says against my frustration at not being heard, “I think people are scared of you”, or “They don’t know how to respond”) because I misrepresent myself, or rather present in a manner that does not integrate with a general understanding of meaning. I don’t see things the way they see things. I don’t use words the way they’re meant to be used for best communication. Or I use them to say things everyone already knows and doesn’t say or doesn’t know and doesn’t need to know. Or I use them too much. Or I use all the words all the time, systematically selecting them from my vocabularic grab-bag and hurling them at the wall. Or I am, or my words are, “just a bit too weird [for them]” (Peter’s words again). This, especially the “scared of you”, is a deep shock to me, that what I say could be self-alienating, that I am “separated by a common language”, and ironically against the desire to communicate.
Perhaps it is just that I need to know that words are not my thing. Perhaps I just need to find some of “my own kind”. Perhaps I need to take my own photographs of the things I see, write my own misunderstood meanings for my own edification. I do find meaning, find commonality with others, in photography, which I do. I do find it in poetry, which I listen to. A friend, a different friend, a poet, drew parallel between a photograph and a poem and it rang true: a poem or a photo is not a representation for a thing, it is a thing itself, woven through with meaning and connection [and in a language not clouded by neuropsychological difference]. I understand. In both I can see what things look like.
One of the things that I am finding complicated is that, relative to and by the vast neurotypical majority, it could be, and I think often is, considered through lack of awareness (of which I myself must own prior) that those on the Spectrum have “partial” personalities from the assumed and perhaps apparent presentation in the area of feelings and emotions – that is, that these are lacking. As you would imagine, I would now find this assumption particularly problematic. Any comparisons to “normality”, even prior to neuropsychological consideration, that had as their assumption greater diminishment the further you were from the mean, always ground my teeth – they seemed to celebrate literal mediocrity as good mental health, deviation from it as deviant.
My feelings and emotions, my perceptions of feelings and emotions, my priorities and values I place in feelings and emotions in assorted circumstances and among assorted people, my understanding of feelings and emotions, are quite likely significantly different to the mean, in a manner that a majority’s shared, general language of perception might interpret, through different neuropsychological structures speaking different “language”, as being absent.
But I’m a whole person. Decades of conditioned compliance and concentration at conscious, learned, frequently pre-scripted societal interactivity may have subverted and clothed that whole person in a suit fit to let me mostly pass in an infrequently-visited public space – costumed bones cosplaying character so well that I am now swimming in a lack of surety as to where I begin and how to begin being it – but there’s a whole person there, somewhere, now vastly more than there has ever been, regardless of any possible apparent lack of emotions and feelings. I may not demonstrate them, and not seek them in others, and seek less others than most (it can come with the diagnostic initialism) but I’m definitely whole. And if I can stretch to talking in the form of “us” for the first time… we are whole.
But my Now, this moment, is that everything has changed for me, against a self-centred momentary surprise that the world didn’t change with me (the psychologist called this “normal for everyone”). I was a fish around a lattice, calling the lattice “me” and the fish… also “me”, I guess. And not knowing which was which… metaphorical constructs of misaligned machinery. But now I am diffuse, a cloud, woven with and weaving within my own ossified scaffold, seeking a way in, seeking to absorb, an alignment, a fusion…
I want to sink into my bones. Become.
“and his body was wet with the dew of heaven, till his hairs were grown like eagles’ feathers, and his nails like birds’ claws”