Balancing Acts

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Apparently, there’s a bit of a Twitter storm going on at the moment around the hashtags #highfunctioningmeans and #functioninglabelsmean.  This has largely passed me by, because I’m not connected to the Autistic community on Twitter.  Twitter is for my public persona – you know, the one where I’m high functioning, and not in any way autistic.

But luckily for me, this subject has started to seep into the glorious anonymity of the blogosphere.  Both feministaspie and ischemgeek have excellent posts on it this week.  In reading ischemgeek’s satirical but oh-so-true account of what it means to be called high functioning, one phrase really hit home:

High functioning means you will always walk the tight rope between burnout and dehumanization. Don’t fall.

This is so accurate, and so painful, because I am really not good at walking tightropes.  In fact, I’m not good at balancing at all.  I can’t walk on walls without looking down at my feet; I can’t walk downstairs without holding a handrail; I couldn’t ride a bike without stabilisers until I was eleven.  I even have trouble walking on flat surfaces if the carpet or Lino happens to be patterned, for crying out loud.

And it’s not just literal balancing I have trouble with.  It has often been noted by people who aren’t me that I’m not very good at holding a balanced viewpoint, or seeing both sides of a debate.  (It has often been noted by me that it’s ridiculous to consider viewpoints which are plainly wrong when the debate or problem clearly has one logical solution – but that’s another story.)  I’m not very good at balancing my life either – I tend to swing between frenetic activity and complete inertia; and, as I’ve noted before, I’m pretty rubbish at doing things like managing my time or getting enough sleep.

But the thing about walking the tightrope between burnout and dehumanisation: absolutely.  I know exactly how that feels.  Where I grew up, there used to be a saying, “street angel, house devil,” for those kids who were paragons of virtue at school and in public, but created merry hell at home.  I sometimes feel that I live my whole life that way – being all empathic and sociable in public, then closing my street door and descending into meltdown with the strain of it all.

In some ways, parochial ministry is the ideal life for someone who’s autistic.  You work alone a lot of the time; you work from home a lot of the time; and you get to manage your own diary, which allows plenty of scope for decompression time.  It’s not like being a teacher or office worker or mechanic, where you’re expected to turn up and function at the same time each day or you’ll lose your job.  The number of occasions in the week when I absolutely have to be there and be on form are, thankfully, relatively few.  The downside is that those occasions are all really important – and I’m almost always centre stage.  If there’s a service, I’m probably leading it.  If there’s a committee meeting, I’m probably chairing it.  If there’s some kind of social event, it’s incumbent on me to mingle, and mingle well.  No matter how ‘low functioning’ (or non-functioning) I might be at the time, I simply have to turn up and perform.  You can’t really cancel a Sunday service, or call in sick to somebody’s funeral.

I guess that somebody who believes in functioning labels might say that this simply proves that I’m high functioning after all.  If I can be non-speaking at home, then suddenly snap into preaching a sermon, doesn’t that just prove that I can do it if I put my mind to it?  If I can’t bear the smell of any cleaning products or perfumes in my own house, but then sit for an hour in somebody else’s home being assaulted by their air freshener, doesn’t that show that it’s not really sensory overload, just fussiness?  If I can be right on the brink of meltdown and then suddenly suspend it while I answer the phone to the funeral director, surely that’s evidence that it’s not a real meltdown, and I could perfectly well control my behaviour if I wanted to.  After all, a “proper” Autistic, a “low functioning” Autistic couldn’t do any of those things.

Well, as it happens, I know some so-called “low functioning” autistic people, and it’s clear to me that they walk the tightrope just as I do.  I see them employing workarounds and self-management strategies all the time; I can only imagine what it costs them.  I certainly know what it costs me, because time on the tightrope doesn’t come cheap.

The older I get, the more “autistic” I seem to become.  Some of that, I think, is positive: I’m more attuned to the things that I can’t cope with; I’m less bothered about employing strategies like stimming and echolalia that help me get through the day; I’m more knowledgable about autism in general, so I’ve re-categorised quite a lot of my character, thinking and behaviour into the “I’m autistic” file rather than the “I’m a complete failure as a human being” file.  But I also know that the years of walking the tightrope are starting to take their toll.  I have more, and worse, meltdowns now than I ever did.  I’m less able to cope with sensory overload.  I’m starting to have problems with spoken language, and even periods of not being able to speak at all, which is supremely scary for someone who has always relied on verbal agility.  Worst of all, I am becoming less able to do the everyday stuff of life, like shopping and loading the dishwasher and getting dressed, and even getting up in the morning.  I’m lucky to have someone who helps me a bit with all that stuff, out of the kindness of their heart and without me paying them; but I can’t rely on that lasting forever.  Sooner or later, something is going to have to give.  Sooner or later, I will actually need proper support.

And therein lies the terrible catch-22 of being so-called high functioning.  As ischemgeek put it so well:

High functioning means you’re disabled enough to have real challenges, but not enough to get any help.

All those years of passing and achieving got me a bunch of qualifications, a job and a certain amount of status and respect; but what they prevented me from getting is a diagnosis,  any accommodations or support, any recognition that I might have difficulties which can’t just be resolved if I try a bit harder or pull myself together.  Above all, they’ve landed me in a place where I don’t feel that I can “come out,” where I’ve internalised society’s ableism so much that the only place I’m prepared to say all this is on an anonymous blog, all the while praying that nobody ever finds out who I am.

And so, despite the fact that I don’t like functioning labels, I’m pro-neurodiversity and I definitely don’t think Autism is anything to be ashamed of, I end up perpetuating the very stereotypes I detest.  What we really need, I reckon, is for everyone who is actually autistic to get off the tightrope, stand up and say: This is me.  I’m Autistic.  Here are all the awesome things I can do.  Here are all the things I struggle with.  Here are the reasonable accommodations I need.

Think how brilliant that would be.  I definitely think everyone should do it.

Somebody else go first.

Nobody Knows I’m Autistic

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When I was at Seminary (Vicar training college), one of my fellow Seminarians had a T-shirt which read Nobody knows I’m a Lesbian.  That shirt always raised a smile amongst the student body: (a) because of its inherent irony; (b) because it was a slightly risqué thing to wear in a Church of England Theological College, and always threw the staff into a welter of indecision about whether they should deal with it or not; and (c) because the wearer happened to be a man.

I forget now whether the man in question actually had a political point to make or was just being a bit provocative, but lately I’ve been wishing for a similar T-shirt, one that says Nobody knows I’m autistic.  I would wear it with pride.  Probably inside out and under a jumper, and only when I’m not going out in public.

Because, you see, it’s true; nobody knows that I’m autistic.  Well, almost nobody.  I haven’t told the Church authorities, I haven’t told my Parishioners, I haven’t told members of my family or any of my friends.  I haven’t even told any medical professionals, which is to say that I still haven’t plucked up the courage to get formally diagnosed (partly because I have a morbid fear and dislike of all things medical; and partly, I admit, because I’m a little bit scared they might tell me I’m not autistic – because, you know, there’s probably some other totally logical explanation for my social and communication difficulties, sensory overload, meltdowns, narrow focus, stimming, special interests, language problems, prosopagnosia, emotional regulation difficulties, executive function failures, etc., etc., etc.).

So nobody knows I’m autistic, apart from one or two people who worked it out for themselves and have been brave enough to say so.  People who don’t know me well, or who do know me well but are generally insensitive anyway, continue to do all the things that make life hellish for me, like standing too close, or talking to me when I’m in the middle of doing something else, or expecting me to answer the phone and be vaguely coherent and remember what we talked about afterwards.

But recently I’ve come to realise that over the years I’ve been in this Parish, the way people interact with me has changed.  When I first came here, my phone used to ring off the hook; nowadays almost everybody texts or emails.  If I’m invited to dinner, the invitation now comes with a full description of what’s on the menu, who else will be there and what sort of time the evening will end.  If I’m being asked to do a task, people now ask if I want reminding, and if so, how often and by what means.  Every so often, someone will present me with a glass of water before I realise I’m dehydrated, tell me to put on a jumper before I realise I’m cold or produce my sunglasses before I’ve even registered that I’m finding the light too bright.  This morning after Mass, someone even told me to sit down and thrust a puppy into my arms.  I hadn’t noticed that I was suffering anything more than mild irritation, and it was only after I’d sat stroking the puppy for a while and it had fallen asleep on my lap that I realised how dangerously close I’d come to a public meltdown.

Realising all this makes me feel a bit embarrassed, as if I’ve become like those stroppy celebrities who have people running around them in a blind panic all the time checking that they’ve got the right kind of sparkling water in their dressing rooms.  There are plenty of clergy who become high-maintenance dictators in their own churches, and I definitely don’t want to be one of them.  Priesthood is a call to serve, not to be served.  I don’t want my Parishioners to feel that they’re constantly treading on eggshells or having to keep me sweet.  I haven’t been open with them about my autism partly because I’m still a bit ashamed of it (hello, internalised ableism), but mostly because I don’t want them to feel they have to rally round their “special needs” Vicar.

But really, this is self-delusional bullshit.  They do rally round me, and they do realise I have specialised needs, whether or not they’d ever use (or even think of) the A-word.  In our Church, we make all sorts of little accommodations for people who are colour blind, or hard of hearing, or a bit unsteady on their pins, or emotionally vulnerable.  Nobody thinks these are unreasonable adaptations or that the people concerned are being demanding or difficult; it’s just normal human behaviour to be sensitive to one another’s needs and help each other out.

I’ve spent most of my life pretending not to be autistic, and frankly, it hasn’t served me well.  I can’t even begin to recount the number of friends I’ve lost, jobs I’ve screwed up and horrendous situations I’ve got myself into, simply because I’ve been unable to admit to myself or anyone else that there are certain things I just can’t do, or won’t manage without support.  The only reason I have survived this long in my present Parish is because I am surrounded by people, both in the Church and in the wider community, who just somehow get it, without being told, and are decent enough to try and provide me with the accommodations I need.

So, yeah, nobody knows I’m autistic … except that quite a lot of people do.  And despite all the things that make living in the NT world really difficult, like air fresheners and fluorescent lighting and knobbly socks, there are lots of people who subtly and intuitively work to make my life easier, not because they’re saints or do-gooders or Autism experts, but simply because they’re half-decent human beings.  I’m grateful to have them in my life, and I’m blessed to have them in my Church.

I don’t want to suggest that my Church is some shiny, happy Christian utopia where everybody is always a sunbeam for Jesus.  It isn’t.  We still have fallings-out and frustrations, and some days they all drive me batty and I could cheerfully murder the lot of them.  But somehow it’s become a place where stimming is ok, executive function disasters are tolerated and everybody accepts that sometimes it’s just necessary for the Vicar to pretend to be a horse.

Plus, did I mention that we have puppies?  Really.  How awesome is that?

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