AAW #4: Functioning

I hope you’ve enjoyed the first few posts in this wee project of mine – the feedback from people has been awesome, and I’m really glad it’s not just me typing into thin air for no one’s gratification but my own! If you’ve got comments, please don’t be shy, on this one or any other, conversations are good, especially on this sort of thing. I know there are more opinions than mine, and it’s really interesting and useful to hear them – the whole point of this is to fill the knowledge vacuum around autism, including the bit of it that’s in my head, so as long as you keep it clean, anything goes.

Tonight’s post (because I failed to get my arse in gear today, again) is a weird one for me, because it encompasses a change I only just realised I need to make in the way I refer to autism, both my own and, more importantly, everyone else’s. The application of “function” labels seemed to me to be an important thing, and it was definitely a part of my diagnostic process. I was labelled “high functioning”, which basically means that I can successfully human on my own on most levels. “Low functioning” supposedly covers things like whether someone can speak, has movement issues, can take care of their own needs, and things like that. I didn’t question them until the last couple of months, but once I read the first couple of articles about why this wasn’t such a good idea, I realised I’d been on the wrong side of this one without realising for ages. If I’ve ever been in a conversation with anyone reading this and have put my foot in it, now’s the point where I’m apologising for being an idiot.

I’ve had my own problems with the idea of “high functioning” in any case, just not big enough ones to make me revise my use of the term for myself (I have too high a tolerance for things that inconvenience me). I realise that I share this with a lot of other people who’ve been labelled so. The issue is that “high functioning” basically means that we are “passing” for normal enough that people don’t register that we are still struggling. Comparing struggles between people is as pointless as saying “my headache’s worse than yours”, to my mind, but it’s still fair to observe that if someone is not observing the fact that you might need some extra support, you have more to struggle over than someone who has everything they need. I’ve also heard people use “high functioning” as a compliment, which is kinda crazy when you think about the flipside, i.e. that “low functioning” must be a bad thing, and avoided where you can (which is nowhere, if you’re already there). If what you mean by “high functioning” is that you can’t tell that I’m autistic, fair enough, but cut the crap and say so rather than cloaking it in a non-statement that shows you really don’t know what you’re talking about.

My problems with “high functioning” are thus. What is “high functioning” about being able to cope with house viewings when booked in advance, but almost passing out twice in front of a viewings assistant because they turned up unannounced? What is “high functioning” about losing the ability to speak temporarily because someone asked you too many questions in a row? What is “high functioning” about the fact that if I have a routine and then break it, I can’t function? What is “high functioning” when I have to lie in a darkened room for an entire day because the feel of sunlight on my back when I walked into my kitchen first thing was too overwhelming?

The obvious answer to all those questions is “nothing”, clearly. My levels of function vary hugely according to my situation. Give me a situation where I’m in control, I have my head together, my mental health isn’t screwing me up, the sensory input is within my tolerable limits, and people know and understand me, and we’re cooking. Compromise one or more of those things, and my ability to function as I feel I should decreases. Someone says they’ll e-mail, or be involved in something, and doesn’t come back in well over a week despite me saying it needs to happen can set me back really badly. I have to be reminded that I’ve done all I can in making it clear how quickly this thing needs to be done, and asking the other person to help me out, and even then, like today, I’ll spend a lot of time banging my head on the desk (not literally) over it because the Thing isn’t working as it ought.

The sensory issues that often come with autism are huge, for me, too. There’s way more to write about it than I can put in this one little post, and it really deserves a post of its own, but it also forms a huge part of the idea of functioning for me, so it’s going in here for now. It’s also one of the hardest things to try and explain to people, because the idea of experiencing senses in any other way than the way you’ve got for yourself is really, really hard. Imagine being blind, and trying to describe the colour blue, or deaf and describe what music sounds like. Imagine having to decide whether to go shopping because you don’t know if the light will feel too bright today, or the feeling of being totally overwhelmed because one person is whispering on the other side of the room while you’re trying to talk. Some things can be helped, like that last example, but trying to get people to understand that you really need this to happen is a nightmare. I was in charge of running rehearsals for a music group until this time last year, and I tried to explain at the beginning that I really needed people to not talk while I was talking. Needless to say, a bunch of students didn’t take this entirely on board, so I kept explaining, and asking the rest of the committee for back up. Their responses were often on the lines of “you have to expect people to chat”, and “it’s not a big deal, they’re here to be sociable”, and “you’re asking too much”. If I had been a person in a wheelchair in front of a set of steps, I would not have been asked to walk up them. Why, then, when my disability can set me back in a certain situation, is it considered OK for people to negate the need I have? I understand it’s hard for a group of friends not to talk when they’re together, but it’s also humiliating for me when I’m supposedly in charge and completely lose my thread because someone won’t stop whispering.

I am too “high functioning” for people to think they need to make alterations to anything, a lot of the time. Mostly, I can suck it up – the room where my Morris side practises has horrible lighting that is really taxing on my eyes and brain, but that’s the way it is, it just means I’m twice as tired when I get home. You can’t get people in town to shut up when they’re out for a nice bit of “retail therapy” (another concept that’s totally lost on me), so I put my headphones in, choose a nice, soothing audiobook, often Harry Potter because Stephen Fry, and make the trip as short as humanly possible. However, when I do ask for things, I don’t think people realise that I’ve already had to make a huge number of concessions on my side because asking the world to help me out isn’t an option. I’m still learning what I need, what works for me, and just what sensory issues mean in my life. My levels of function can’t be made into a single idea of “high” or “low” function, and it’s insulting to those in the “low” function camp who are given a label that implies they are somehow less than me because there are some things they can’t do. There’s no nuance in there for the kid who has an amazing brain, but doesn’t speak and has some physical issues they need help with. Once they can type, say, or sign, or find their way of communicating whatever it may be, does that make them higher or lower functioning?

The point of asking that question is to show that there isn’t an answer. I don’t know what the answer is to avoiding generalisations about function, and I’ve got a lot to learn on the whole subject in general, but I am in the process of modifying my speech so I don’t talk about function in that way. My Brother and I function in different ways (he would have been described as “lower functioning” than me, which is a stupid phrase – put the two of us in an industrial chemistry lab and then tell me who’s functioning better), and I can name what they are. I’m not going to on here, because he’s a fully grown adult (as much as I hate to admit it) and it’s not my place to talk about his difficulties, but suffice to say that while we both have the same label, what it means to the two of us are different things.

What most of the people who know me see is my “high functioning” self. The self that can hold conversation, do eye contact, be articulate, funny, witty, and generally pass off as a vivacious, intelligent young woman. My “low functioning” self is a different kettle of fish. I don’t very often let out the way that anxiety cripples me in public, if I can avoid it, but I know I’ve ended up outside a restaurant with a virtual stranger in the cold because the combination of curry, music, conversation, and a weekend full of strangers sent me over the edge. That’s the sort of situation where I could have stopped talking, and I don’t know how I still managed to stay in the moment. He was amazingly patient and is now a very good friend, but it’s very hard to show that side of myself to anyone, let alone someone I don’t yet know. At worst, I can end up going into “shutdown” or “meltdown”. The former is where I temporarily lose my powers of speech, but can type or write just fine, and that’s what I have to do to get anything across for a while. The latter is where everything has built up inside me and I can’t keep it in. I’ve been known to be violent during those times, though mostly towards myself, utterly irrational, screaming, crying, self harming, and at worst, suicidal. There’s nothing “high functioning” about either of those times, and mercifully, I’ve not fully melted down for a long time.

My point is that “high” and “low” functioning might be, at best, slightly useful terms to use for autistic people if you’re trying to work out what’s going on, but they are generalisations that tell you nothing about what’s going on in someone’s life. We do not, and should not, have to “pass” as “normal”, and it’s not a failure if we can’t or haven’t. The autistic child in a wheelchair who flaps their arms around and makes funny-sounding noises in public has not failed by not walking and talking. I try to smile at them, because I know that their world is just as noisy and overbright as mine, probably, and smile at their parents or carers so that they can know that at least one person wasn’t giving them the side eye and judging them. I must look like a loon grinning around the place like that, but I nearly always get a smile back from the parents, and sometimes I get a reaction from the child too. I’m not saying I want a gold star for making it as a disabled person in the real world (though if you want to, I love gold stars, so hit me up, OK?) I want to feel less pressured to keep it in when it’s hard, to feel like I’m allowed to be affected by things, be supported when it gets too much, and helped when things fall apart. There are people in my life who already do that, and they are all angels (even if halos would look damned silly on some of them). It doesn’t take much, a lot of the time, and if you’re confused as to how it should work, then all you have to do is ask :)

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