Small content warning for murder references
Welcome back! Today’s piece of frothing ire is directed at ways autism is talked about.
First up, functioning labels!
By this I mean ‘high-functioning’ (gag) and ‘low-functioning’ (puke). It’s surprisingly hard to define these labels, because they’re most frequently used by neurotypicals to refer to how NT an Autistic or otherwise neurodivergent person comes across as; their meaning is consequently pretty amorphous and arbitrary. Basically, it seems that the more NT an ND person seems, the ‘higher-functioning’ they’re assumed to be — health consequences of masking be damned.
This dismissal of what’s going on under the surface is one of the things that a) really hacks me off about functioning labels and b) renders them ecologically invalid. That’s a bit of jargon I remember from my Psychology A-Level — if a study or term is ecologically valid, that means it matches up well to reality and as such has real predictive and explanatory value. Conversely, an ecologically invalid study or term has little or no real-life relevance or value.
The reliance on surface appearances for assigning functioning labels merges fluidly into one of the other primary reasons for their utter bull***ness — the fact that an Autistic individual can appear to be ‘high’ or ‘low-functioning’ depending on their energy and stress levels, the time of day, when they last ate, the specific context and sensory environment, or even which aspect of their life you’re looking at. For example, if you looked at the fact that I am fairly articulate and well-read, have my own freelance business, live independently and have low support needs for day-to-day matters, you might class me as ‘high-functioning’. However, if you just looked at my extreme social difficulties relating to employment and networking (to the point that freelancing from home is my only viable means of employment, despite the fact that I struggle massively with the networking needed to make it even halfway profitable), my occasional tendency to have anxiety flare-ups accompanied by flashes of extreme irrationality, and the fact that for the past few months I’ve been flushing my loo by pouring a large bucket of water down the bowl because I can’t scrape up the executive function to change the old, leaky fill valve in the cistern, you’d assume I was fairly low-functioning.*
Another example I like to point out to demonstrate the invalidity and inadequacy of functioning labels is Amy Sequenzia, who combines being non-speaking and having high support needs with being a prominent writer, poet and autistic rights activist.
Apart from the ecological invalidity, functioning labels infuriate me because of the inherent value judgement — treating Autistic folks as fundamentally ‘broken’ but ‘useful’ to a greater or lesser extent depending on how well they’re able to look and act like they’re not Autistic. This can also lead to functioning labels being used to invalidate our experiences, voices and struggles and deny us support — “Oh, you’re soooo high-functioning, why would you need help?” — or autonomy — “Eh, don’t bother, they’re too low-functioning to do anything for themselves.” Grrrrrrrr…
That’s functioning labels dealt with — now for language!
Specifically, person-first and identity-first language. I’m speaking solely for myself here — I prefer identity-first terminology — so I’d advise asking which sort a person prefers in a similar way to how you’d ask about pronouns.
Person-first language refers to phraseology like ‘person with autism’ — I feel icky just typing that… I loathe this sort of terminology with the fiery passion of a thousand supernovae because of all the negative overtones and inherent assumptions. Person-first language assumes that the autism is a separate entity from the Autistic person, as if it were AdBlock Plus or some other add-on stuck to a web browser, which could be removed without harming the person it’s attached to. This is a view I find outright nauseating, because it plays so closely with the ableist, eugenicist rhetoric of ‘disease’ and ‘problem’ and ‘cure’ that is still all too prevalent in NT views of autism.
Identity-first language refers to ‘Autistic person’ and similar turns of phrase. I strongly prefer identity-first terminology because it more accurately reflects the fact that my autism is a fundamental and inextricable fact about me, my brain, my neurological development and the way I exist in, interpret and interact with the world — as essential to me as the Linux kernel** is to my personal laptop that runs openSUSE. If someone were to try to remove my autism, I would therefore defend myself as if responding to attempted murder, because that is what such an attempt would be. Removing my autism would be murder, by ego-death if not bodily death, because it would mean removing everything that makes me me and drastically rewiring my entire brain. If the process didn’t kill me outright, it’d leave my body in a vegetative state or (worst-case scenario) annihilate my current self and have a total stranger move in behind my face. That’s horror-movie levels of f’d up!
That’s my take on the matter — feel free to comment with other perspectives.
This has been a Rant(tm). See you next week!
Part 1 here: https://seaproofreading.wordpress.com/2022/04/04/autistic-rage-part-1-the-blue-puzzle-piece/
*Note: I was at least able to drain the cistern properly, so I don’t have to worry about a flooded bathroom — but for whatever reason, my brain is insisting that I re-varnish the cork floor tiles first before doing the valve but can’t summon the executive function to get around to that at the moment, and when the leak first started I ended up in a prolonged game of phone-tag with my local plumber that was sending my anxiety absolutely berserk so I had to stop and look up the replacement procedure myself — reasonably simple, but with my brain being the a-hole it is… To add to the weirdness, the leak itself spontaneously stopped on the winter solstice just gone. Spooky, huh?
**The kernel of an operating system is a program which is pretty much always on at the core of the OS — being the first thing to come up after the bootloader — and facilitates the interactions of software and hardware. All other parts of the operating system are ultimately answerable to the kernel, and if the kernel is deleted the whole operating system is irretrievably ruined.
Susan Albinson 