I really, really hate functioning labels.
My husband, who is and remains my greatest NT advocate, still uses them when talking about me to new acquaintances, which he does whenever relevant on the theory that parents and teachers (with whom he interacts frequently, being a teacher) need to know that autistic people can and do grow up to have real adult lives and “normal people” in those lives who think their autistic friend is frabjulous. In the introduction to Autism and Representation, Mark Osteen postulates that the labels “high-functioning” and “low-functioning” are useful if they help us avoid allowing “high-functioning” voices to take over the discourse and effectively shut up the very “low-functioning” people they claim to represent.*
But I hate functioning labels.
Plenty of people have wondered why I, of all people, should hate them. By any measure of “high-functioning” that pegs functioning to IQ, I’m “high-functioning” – yes, even by Kanner’s absurd “150 or above” standard (a cutoff that, as MIchelle Dawson points out in the linked post, means that better than 99 percent of the entire human population would be “low-functioning” by Kanner’s definition). If you define “high-functioning” as the ability to produce intelligible speech with my mouth, I’m high-functioning. If you define “high-functioning” as the ability to drive a car, I’m high-functioning. In fact, I have yet to find a definition of “high-functioning” that wouldn’t reasonably include me.
And yet I hate functioning labels.
It’s not just because, like Cynthia at Musings of an Aspie, I am both Mary and Joan. It’s not just because when I read pieces like that recent New York Times article, “The Kids Who Beat Autism,” that I want to cry, throw things, or commandeer all of downtown to start reading Chavisory’s “The Unrecovered” or Michael Monje Jr’s “Not That Autistic” into a megaphone. It’s not even because I feel some kind of quasi-conscious defensiveness about the fact that I can pass, while people whom I greatly respect and value – like Mel Baggs, who recently wrote a Tumblr post on this very topic – merely wish they could. (I don’t. As Monje points out in the above-linked post, I am aware that passing is a privilege – and I am also aware that it comes with shortcomings nonetheless.)
It’s because, when I hear the words “high-functioning” applied to me, I see this:
If this diagram and my captions read as the biggest pile of trivializing, insulting bullshit you’ve seen since “The Kids Who Beat Autism,” good. That was intentional.
Not only is this not true of so-called “high-functioning” me, who is as “human” as any non-autistic person, it is also not true of so-called “low-functioning” people, who are ALSO AS “HUMAN” AS ANY NON-AUTISTIC PERSON.
I have heard “high-functioning” used to mean many things, from “has an IQ several standard deviations among the mean” to “has a job” to “talks.” But I have never, not once, heard “low-functioning” to mean anything but “hopeless tragedy.” And I have never heard either of these labels deployed to mean anything but “still not quite, you know…one of us.”
That’s what “____-functioning” means. “Not one of us.” And for someone who just about had a panic attack in the library this afternoon upon encountering the university’s not one but two copies of Bettelheim’s The Empty Fortress, someone who did have a panic attack upon reading ASAN’s latest release on the Judge Rotenberg Center, “high-functioning” is triggering as fuck.**
Because you know what? I spent the first thirty years of my life trying not to let on that I was “not one of us.” Out of fear that I’d end up someplace like the JRC if I did. And I have needed a lot of therapy to learn how to stop that fear from taking over my entire life. A disturbing number of autistic adults do…if they survive that long.
“High-functioning” is trauma. Stop it.
*As someone with a keen interest in how Gayatri Spivak’s essential question “Can the subaltern speak?” applies to autistic people, I feel like i ought at least to pay attention to Osteen’s point, even if I’m not sure yet how to reconcile it with my hatred for functioning labels.
**Swear word deployed in direct proportion to intensity of emotion.