A Personal Note on Functioning Labels

This is a far more personal post than I normally do here, and I apologise for that. I’ll be back to talking about old SF novels or something soon, I promise. I don’t feel comfortable at all talking about my personal life…

But I wanted to say something brief about functioning labels as they’re applied to autistic people, inspired by a thought I had today, and by a lot of talk recently about a particularly repellent example of the bad autism parent memoir. I wanted to explain why functioning labels for autistic people are far, far less use than they may appear.

By most of the standards that neurotypical people use, I am “high functioning”. Certainly I was able to remain in full-time employment consistently from 2004 through June last year without ever relying on any kind of benefits, and even after my massive breakdown and terrible health problems last year (from the stress of trying to do wage-work for so long in autism-hostile environments) I’m able more or less to earn enough to live on now through my writing (thanks largely to my Patreon backers), and the ability to function as a wage-earning unit is the only thing that really counts by any of the metrics used in current society.

This means that, in the eyes of “autism parents” (which I am using here as a technical term — I know many parents of autistic people who are entirely wonderful people, but I’m referring here to the people who, for example, write books about how they want to sterilise their son because he shouldn’t be allowed to breed), I am “high functioning”, and so I’m “not like my child” and utterly unable to have a sensible opinion about how autistic people should be treated.

But… I had a bit of a realisation today, while thinking about something unrelated — something I’d known as a fact about myself, but hadn’t really been aware of in a major way.

And that is that I am able, easily, to list all the in-person human contact I’ve had with anyone other than my wife in the last five weeks. Here it is, in total:

I have several times said “thanks” to a cashier in a shop.

My wife went out with friends for most of Sunday, and the friends came into our house for ten minutes.

I had three brief medical appointments, with a combined human-interaction time of approximately fifteen minutes.

That’s the lot. Every moment I’ve spent talking to another human being, other than my wife, in the same physical location since my trip to London in October.

There are several causes for this — my strange sleep schedule, my reduced mobility, and my dislike of loud, crowded, public places all play a part, as does my general introversion. All of these are part of my disability. But the biggest part is simply that I am completely, utterly, unable to navigate social interactions in even the most basic way.

There are a few social occasions I know how to navigate, but these are hyper-specific ones that don’t come up more than once or twice a year. Otherwise, it’s a good job I don’t have an especially strong desire to spend time with other people that often, because I wouldn’t have a clue how to go about it.

And this is disabling in ways that are extremely non-obvious. It’s certainly meant, throughout my life, that I have been far less effective at doing the things I’m passionate about than otherwise I would be. You build an audience as a writer through networking, and through building a client base — which I can’t do. I spent years wanting to be a musician, and think I have some real talent for songwriting and arranging. But as a non-singing composer, I’d have to rely on other people to sing my songs and play the other parts — but when I’ve been in bands, I’ve either been miserable myself or made other people miserable. And as a political campaigner, I have no hope ever of doing anything like getting selected as a Parliamentary candidate, even if I become well enough to do it, as I don’t have the ability to navigate the internal party structures necessary to build a support base in the party (much less the ability to then relate to the electorate in a way they can comprehend).

Similar things have happened in work situations (and contributed to my illness). Time and again I’ve worked harder than other people around me, and yet not worked on the right projects, or impressed the right people, because I have no instinct for these things.

This isn’t something as simple as “shyness” or “awkwardness”. And nor do I think it’s something that renders me especially unlikeable — plenty of people seem to like me if they’re forced into a position where they have to interact with me (I used to be an extremely good nursing assistant when I worked for a couple of years on a psychiatric ward, as the patients tended to like me and take me into their confidence more than they did most of the other staff). It’s a deeper cognitive thing. Most people seem to instinctively know their place in any social group, like there’s a hierarchy there which they can fit into almost straight away. I, on the other hand, am completely unable to even conceptualise social interactions in those terms, which leads to people either thinking I’m being horribly rude and or thinking that I’m standoffish because whatever signals I send out seem to get interpreted either as “I should be in charge” or “bother me not with your petty concerns, mortals”, or something.

Now, this sounds like nothing at all serious, when I try to explain it. But this is a *profound* inability to function. It’s an inability to develop the kind of network of friendships and casual acquaintanceships that other people have (which makes the few friends I do have all the more valuable to me, incidentally — “not many” is very different from “none at all”), and in an economic system where advancement and security are functions not of ability to do productive work but of ability to be a “team player” and to make a good impression on one’s boss, it’s *hideously* disabling.

And yet this is something that would never be taken into account in most discussions of how “well-functioning” an autistic person is. Because in limited situations I can pass as neurotypical, at great cognitive expense, for a short time, and because I’m verbal, I must not be disabled.

Yet if you’re a neurotypical person reading this, think what you would consider “not much time spent around other people”. Think how you’d cope if there were months when you spent twenty-five minutes, total, in the company of someone other than your partner.

How well would you really think you were functioning then?

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7 Responses to A Personal Note on Functioning Labels

  1. @thamesynne@i.write.codethat.sucks says:

    Oh good lord, this rings so many bells with me… if I were to describe my experience of life, it would sound an *awful* lot like this. (And now I think I need to go and cry for a bit, so… er, yes.)

    • Andrew Hickey says:

      Sorry I made you cry. I’d put a trigger warning on it, except I can’t imagine any way to express what the trigger would be. Hope you’re OK.

  2. Irina says:

    Yes, oh yes! (I go swimming 3-4 days a week, one day with my best friend, the other days on my own, and I have some interaction there)

    I went to Worldcon and spent FOUR! WHOLE! DAYS! talking to strangers and almost-strangers. Fortunately also to internet acquaintances, several of whom became meatspace friends right there. Exhausting and bracing at the same time. I can do that for a couple of days, but I can’t conceive of doing it always.

    • Andrew Hickey says:

      Yeah, I’m able to cope in situations like that for short periods of a couple of days. I’ve not been to Worldcon yet (though hoping to in 2019) but I go to one comic convention a year, and to occasional political conferences and Beach Boys fan meetups, and I can do the conversing-about-a-shared-interest-in-a-room-with-Internet-friends thing there.

  3. Fred Herman says:

    It’s familiar. I don’t *think* I’m autistic (at least, never been diagnosed as such), but this–

    [Most people seem to instinctively know their place in any social group, like there’s a hierarchy there which they can fit into almost straight away. I, on the other hand, am completely unable to even conceptualise social interactions in those terms, which leads to people either thinking I’m being horribly rude and or thinking that I’m standoffish]

    –is what it always feels like; like there’s some extremely obvious unmentioned “thing” that everyone else sees, but you don’t. Where I manage in social/work/family situations, it’s by sort of roleplaying the person I’m supposed to be, if that makes any sense.

    It does seem, though, that the social norms in any given situation (beyond basic civility) are a great deal more subjective than people will generally admit, and set by whomever happens to have the power position in a particular social dynamic–who usually has idiosyncracies of hir own, which are either unacknowledged or taken as perfectly normative (or in some cases, simply “entitled”–the Weinstein case would be an extreme example of a not-uncommon thing). I’ve certainly encountered different individuals who took it upon themselves to “explain” their senses of propriety–which were, perhaps unsurprisingly, mutually exclusive.

    Apologies if this turned into a sort of drive-by comment.

    • Andrew Hickey says:

      No need for apologies at all! And yes, the roleplaying thing makes a *lot* of sense (and I’m going to have to do a lot of that as we visit the in-laws for Xmas next week).
      From your description, there’s a non-zero chance that you actually *are* autistic and just don’t realise it. You *might* want to try a diagnostic test — if so, http://www.aspietests.org/userdetails.php?target=raads/index.php is the one that I think has least ableist nonsense in it, and it’s used as a clinical test sometimes.
      (Or, of course, you may well not want a diagnostic test, and that’s fine too. Labels help some people and don’t help others.)

      • Fred Herman says:

        Hey, thanks. I did try the test, and do seem to have indications according to it. I don’t know; some of the questions did seem a bit leading–but I appreciate the link, and given the results I’ll think about pursuing this further.

        Good luck with the in-laws; I hope your trip over here (yeah, Yank) goes smoothly and well.

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