Words matter. But the words we have don’t do the work they’re meant to do.
If I use a descriptive word to describe myself, I expect that word to carry a specific weight with another person. If I say I am ‘autistic,’ our idea of what I mean ought to be similar enough that we become more recognizable to each other. And yet that is not the case, and the historical cause of this is contained in the word itself, but more generally the impetus to diagnose, to specify one set of ‘symptoms’ from another, dividing an indivisible individual into component parts.
Autism is from the Greek autós, self, as in auto-mobile (moving itself), auto-immune disorder (immune system attacks its own body). Autos performs both uses of ‘self’ in ‘I myself know myself,’ a reflexive and intensive pronominal adjective.
‘Autistic’ therefore carries the sense of ‘self-focused’ and properly describes what we call
narcissism egoism. Insofar as the ego is the self, the meanings innate to these words make egoism and autism synonymous.
The idea of isolated selfhood is reinforced by autism’s antonym, ‘allistic,’ derived from állos, another Greek pronominal adjective, meaning ‘(an)other’ as in the basic distinction between Self and Other.
The old theory went that autistic folks could not empathize with others whereas allistic folks could. Hence the names, autistic (self-focused) and allistic (other-focused). Theory had it that autistic folks could not engage interpersonally, or could only do so with great difficulty, and were like islands unto themselves.
The foundations of this theory, I’ll call it the Autistic Island Theory, were laid with the false premise that ‘autism’ was characterized by a deficit of neural activity, but now we know it is the reverse: autistic folks’ neural activity is hyperconnective, hyperactive, hyperattuned.
Looking around at the highly individualistic society in which I find myself, I am nearly reduced to tears from laughter. I have no empathy, but the people around me do??? What a twisted definition of empathy!
Probably neither neurotype is more or less naturally structured for empathy. But prejudice is all-consuming, and the eugenic missions of early biological science prevalent in every other field of study has had an equally profound effect on the common conception of ‘autism’ and other labelled types of neurodivergence.
In fact autistic folks tend to experience hyper-empathy, so much so that some of us have begun to use the term ’empath’ to describe ourselves, though I wonder at that when my own hyper-empathy came to me through trauma. From being forced down so often, rejected, excluded, made abject, I came to appreciate the space I occupied beyond even the margins and those who inhabit these zones beside me, a vast global majority multiply divided among ourselves.
Most obviously, in the ‘hyper-empath’ vein, we are mirrors of even the subtlest emotions in our interlocutors: if you get rage-y with me, I’ll match you. If you’re excited, I’m excited. If you’re nervous, I’m nervous. Neither of us set the tone over the other, but each of us is affected by the emotional energy of the other.
More profoundly, neurodivergent folks express empathy differently. Most often we revert to personal anecdotes to show that we not only understand another’s situation, we have been or are there ourselves. This comes off as personalization to certain people, as making everything about oneself, when really we’re relaying our experience as parallel to yours, to say ‘I see you’ and to sit with you in your moment of turmoil.
In addition to trauma, which I suspect is a major source of our heightened empathy, neurodivergent folks train our empathy from the beginning by trying to understand why someone did a this or that thing the way they did, so many times every day. We begin studying neurotypical people as children. Neurotypical people are fascinatingly strange creatures who say goofy things (like claiming they have a sense of empathy as they show none or show only selective empathy while alleging that autistic folks have no empathy), and who do the goofiest things. And yet this apparent goofiness, we realize, is what is expected from an individual, so we attempt to mirror what we witness, to adapt that goofiness onto ourselves.
Note here that I am not condoning judgment in either direction from either neurocamp, but I do want to make it clear that just as neurodivergent folks appear strange to neurotypical eyes, so too do neurotypical folks appear strange to neurodivergent eyes. The effort to relate to neurotypical folks (ie the vast majority of people around me) is difficult for neuroqueers like myself, just as it is in the other direction. The only difference: it’s expected of me and not neurotypical folks. I didn’t need to know specifically what was different to know there was something different. I’ve been studying that difference my whole life, but only in the last few years have I come to understand what I have been seeing.
What inhibits us here, not as ‘autistic’ folks, but as humans generally, is the hurdle of realizing one’s brain works differently from another’s. I know this isn’t only an issue of the autistic person not realizing their brain works differently; it is an issue for neurotypical folks as well to recognize that another’s brain doesn’t follow the same paths. But what a challenge!
I used to get so angry at things that seemed so obviously foolish to me: I would angrily demand, Don’t they know what they’re doing?? But… no. They didn’t. And I didn’t know that they didn’t know how to know that that thing they were doing would be so problematic. Often this was received by others as if I were ‘allergic to stupidity,’ as I’ve heard others describe themselves, but that wasn’t it: I just didn’t realize that other people couldn’t (fore)see what I (fore)saw. My brain is different. My mind moves differently.
So what word could be found to express the intensity of ‘autistic’ experience, when it is not a matter or deficits but of extra intensity? Or is this rather a matter of taking on the word in the same way that I took on ‘fag’ and ‘queer’ and made them positive descriptors?
More profoundly, these labels we employ ‘ASD’ ‘AD/HD’ ‘OCD’ etc. fracture an individual into diagnostic compartments: the melding of ‘autism’ and ‘AD/HD’ into ‘AuDHD’ is a perfect example. I’ve seen a figure of 70% for autistic people with AD/HD, whence the combination ‘AuDHD’. But what if, instead of attempting to typify our experiences by generalizing an individual’s particular neurological structure in response to a unique combination of experiences, identities, and social environments, we rather stuck to an intentionally vague term, ‘neurodivergent’ or, as I prefer, ‘neuroqueer,’ which seems to get to the heart of what ‘autism’ actually is, queered neurologies that queer dominant brain models.
There will be fellow ‘autistic’ folks who take umbrage at any one or several of my assertions regarding ‘autism’ made above. We are all different. We all have queerly queered neurologies. And that is precisely my point: no typifying label could ever accurately portray any one of us in our entirety, no matter how many labels are employed.
Everyone conceives of the same thing differently, first of all, and secondly these compartmentalized labels prime an individual to dissect themselves into disparate conditions.
I find myself wondering often whether such-and-such experience is courtesy of AD/HD, autism, CTSD or PSTD. Or is it anxiety? Could it be depression? Eventually I remember that it isn’t any one of those: it’s me, the existent gestalt myself, and my I is so much more than the pathological labels of a profession that is poisoned at its roots by a genocidal eugenics.
Finally, what do these labels indicate? I’ll talk about my experience of being neuroqueer elsewhere, but I think it’s important anyway to acknowledge here that the diagnostic criteria for the “disorder” called ‘autism’ track an external observer’s perceptions of an individual’s responses to their hyper-sensate experience of a traumatizing world. It is every bit as convoluted as that, and the convolutions ought to be giving medical professionals and scientific researchers pause.
Likewise the diagnostic criteria for ‘AD/HD’ track what parts of us irritate or inconvenience other people. Crucially, the diagnosis ‘AD/HD’ is founded on a regard for one neurological pattern among many, as encountered specifically in upper-class (and, so, European-descended) male adolescents. That leaves out everyone whose neurology doesn’t present exactly as with that subset (me), anyone who isn’t upper-class (me), whose ancestry isn’t European, all girls, and genderqueer individuals (also me), and anyone beyond primary school (me).
No wonder I wasn’t diagnosed with AD/HD until I diagnosed myself after I tried adderall at a party* and suddenly a fog I’d never noticed parted inside my mind and all the sudden I could keep up with the rapid pace of my mind.
*. But, like, stop playing with adderall at parties… There’s a shortage and many of us aren’t able to get the medication we require. Go do shrooms instead. It’d be better for you. [Also, according to my psychiatrist at any rate, the adderall shortage is specifically due to the FDA setting a limit on how many pills can be manufactured. I suspect there’s much more than just that going on, like pharmaceutical monopolies, for example.]
To take on these diagnostic labels is to take on a societal burden, to identify oneself with the irritations they provoke in others who ought to have been more flexible, or to identify oneself with the condemnatory pity in the eyes of an external observer, to endure infantilization and the pathologizing medicalization of one’s every action, thought or emotion.
These diagnostic labels do not convey the richness of my experience, and I’m sure they do not speak to yours either, to the array of colors we taste, the textures we hear, the sound waves we feel, the words we dance. I want the colors, the depth, the textures, sounds, all the kinetic speech, all of myself, all of yourselves, to be acknowledgeable, and to be conveyable beyond half-contemptible pity and general derogation resultant from popular misconceptions.
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