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.

Never Gonna Give You Up

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(By the way, the title of the post is not altogether relevant.  It’s just that I have musical echolalia, and Rick Astely has been going around my head ever since Ash Wednesday, and I thought some of you ought to share my pain.  You’re welcome.)

One of the things that happens to all Vicars during Lent is that about a million people ask you what you’re giving up.  I’ve never really understood whether this is supposed to be small talk or an actual question requiring an honest answer.  Either way, it always strikes me as a bit too intimate and personal for an opening gambit while you’re waiting for the kettle to boil.  After all, the point of Lent is generally that you work on something you really struggle with.  If you try to give up swearing, for instance, it’s probably because you think you swear too much and it’s a bad thing.  So when someone asks you what you’re giving up, what they are really asking is “what do you consider to be your greatest failing?”  That’s not intrinsically a bad question, but I’m not sure it’s something you should necessarily have to discuss with someone you’ve only just met, or in a room full of people.

Despite the the fact that people ask me every year what I’m giving up for Lent, the question always manages to floor me.  After several years of floundering around uselessly, I’ve developed a strategy for dealing with it, and I’m ashamed to say that the strategy involves not quite telling the truth.  (Hmm, because lying is a really good thing to do during Lent… not.)  Unless I know someone really well, I’m just not willing to divulge that I’ve attempted to give up staying awake most of the night playing a computer game, or that I’m trying really hard to diversify my diet to include more than one item in any seven-day period. Why?  Because I don’t really need people to know that the reason I’m too knackered to do that thing they need me to do is because I’ve been up all night playing Township and eating Edam.   Mmmm, Edam.

To be honest, I’ve always struggled with the whole Lent thing. I don’t drink enough alcohol or eat enough meat to make those worthy things to give up, and some of the things that other people might call luxuries I regard as absolute necessities. Give up riding a horse for six weeks?  Never gonna happen.

I know that everyone can get a bit self-delusional about the difference between needs and wants, but I think this is especially tricky for those of us on the Spectrum.  There is a big difference, for instance, between *preferring* your beans not to touch your chips and *needing* your beans not to touch your chips, otherwise you will feel physically ill and you won’t be able to eat any of it and you’ll feel an overwhelming urge to scratch the skin off your own face and the whole world will EXPLODE.

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At the risk of sounding like Donald Rumsfeld and his things we don’t know we know, I reckon that for most people, all this stuff falls into three main categories:

1. Things we need

2. Things we don’t need, but we do want

3. Things we think that we need, but we actually just want

So, for instance, we all know that we need food and drink to survive – it’s no good giving up everything including water for six weeks of a Lent and presuming that you’ll still be in a good state to enjoy your Easter Eggs. On the other hand, we all know – however much we might wish it wasn’t so – that chocolate is not actually essential to our survival; we could stop eating it for six weeks without anything bad happening to our bodies at all.  But then there is the grey area of number 3 – all those things that we say we need but which are actually non-essential.  No, you actually will not die if you don’t check Facebook; and you really can leave the house without make-up; and guess what? Plenty of other people manage to get about on public transport, so maybe you don’t absolutely need to drive your car five minutes down the road.

But this is where it gets really complicated for Autistic people. We all have our little foibles, routines and – dare I say it – obsessions. Will I die if I can’t put on my favourite onesie as soon as I get home?  Absolutely not.  Will it rock my equilibrium, and prevent me from doing anything constructive for the rest of the day, and possibly the day after that? Absolutely.

At the heart of most of the current debate about Autism is the question of whether Autistic-ness (routines, stimming, perseveration and all that) ought to be curbed or encouraged.  That’s a whole can of worms I’m not even opening here (although it’s probably pretty obvious which side I gravitate towards).  But I do wonder whether it sometimes prevents us from making some informed decisions about the difference between our own wants and needs. In a shiny, happy world of Autism acceptance, I would be able to stay up all night playing games and eating cheese to my heart’s content, and then stay in bed all day and nobody would mind. In the real world, sadly, most of us have to have a stab at earning a living, looking after our kids or animals, buying groceries and preventing our homes from resembling rubbish dumps. That means that sometimes we need to make some hard choices, sorting out the things that are necessary for our wellbeing (horse riding) and the perseverations that have got slightly out of control and are threatening to derail our whole lives (Doctor Who DVD box set, I’m looking at you.)

So, what am I giving up for Lent?  Nothing. I can’t cope with that sharp transition that happens on Ash Wednesday from doing *whatever* to not doing it.  So this year, I started the work in advance, gradually working out what were the things that were really important and necessary at the moment, and what I could gradually begin to let go. I have no doubt that other things will take their places and become new obsessions (or maybe they already have – see ‘Edam’ above); but that’s not the point. It’s about working out the difference between a need and a want. And maybe for everybody – Autistic or not – that’s what Lent is really about.

Frozen

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When you’re a Vicar, alongside death and taxes comes a third inevitability.  It is that whenever there is some massive thing-that-everyone’s-talking-about, be it a major news event, a number one song or a blockbuster movie, some day you’re going to have to feature it in a sermon.

For the past year, I’ve been putting off preaching on Disney’s Frozen, because [cue gasps and cries of “Heresy!”] I just don’t think it’s a very good film.  That, and the fact that I didn’t particularly want to have ‘Let It Go’ stuck in my head for weeks afterwards.  But on Sunday, we celebrated Candlemas, and the combination of a liturgy which focuses on opening up the doors and a character in the Gospel reading called Anna meant that it was too good an opportunity to pass up.

To be fair, Frozen does stand up to some quite interesting interpretations about self-acceptance in general and Autism in particular.  I didn’t do more than give a nod to that on Sunday, but The Third Glance has an excellent post on it here, which is well worth a read.

I talked, instead, about stories which start with opening doors, and about how Candlemas is the ‘doorway’ festival, marking the transition from Christmas to Lent, Winter to Spring.  Traditionally in Europe, Candlemas was the time when people took down their Christmas decorations – although sadly this is now largely forgotten in England, apart from the few die-hards like me, who still insist that the tree is FINE in late January, and try not to notice that there are more pine needles on the floor than on its branches. The Americans have held onto this sense of transition much better than us, with the celebration of Groundhog Day, which originated in Germany and is virtually unknown in England.  In my Parish, we do have a little toy version of Punxsutawney Phil who sits on the pulpit at Candlemas, and we do also have a solemn announcement of his weather prediction at Mass; but that’s only because I am slightly obsessed with Phil’s beauty and feel it’s important to share my weirdness with the world. Also, because it allows me to say the phrase “Gobbler’s Knob” in Church.

Anyway, I digress.  The point is that I preached a really great sermon (if I do say so myself) all about open doors, and journeys of healing and growth, and the need to move forward and embrace new things, and all that jazz.

And then I went back to the Vicarage to take down the Christmas decorations.

Oh my goodness.  Why do I never remember how traumatic that is?  I find it stressful enough putting the decorations up in the first place (because, you know, change); but taking them down is a whole other world of pain.  I stressed, and cried, and rocked, and stimmed, and shouted at my friend alternately for not helping and for daring to touch things, and the whole thing took hours and was a bloody nightmare.  Apparently, it’s like this every year, but I honestly don’t remember that.  I had thought, beforehand, that I might feel a bit sad, but I was totally unprepared for the tidal wave of emotion that would overtake me, or for the deep depression that I am still experiencing 24 hours later.

I’m not good at feelings and empathy and stuff, but I would guess that my reaction to taking down the decorations roughly equates to the way people feel and behave at the funeral of a much-loved relative or friend.  That is clearly crazy, because (a) we’re taking about baubles, not a favourite granny; (b) I’m not losing them forever, just putting them away in boxes; and (c) I’ll be putting them all up again – in exactly the same places – eleven months from now.  But, crazy or not, it’s how I feel – I am actually, properly grieving.  So much for ‘love is an open door.’  I’m letting nothing go.

I’ve written before about my weird emotional attachment to inanimate objects and the sadness I feel about throwing things away, but this is the first time I’ve ever really made the connection that what I experience is a classic grief reaction.  Elizabeth Kubler-Ross posits that in grief there are five stages through which we pass; but yesterday four of them hit me all at the same time.

The one that is missing for me is, of course, acceptance.  People who only know one thing about Autism generally know that autistic people don’t cope well with change.  I’m no exception to that rule, no matter how many sermons I preach about it.  I have enough trouble with the transition from putting on my socks to brushing my teeth, so I don’t think I’m likely to reach a place of zen acceptance about the death of Christmas any time soon.

It would make this post conceptually very neat if I could say that I am frozen in the face of change, but that feels like the wrong metaphor.  The word ‘frozen’ suggests sharpness and stillness, but yesterday was more like a tornado, and today has the blunt, muffled quality of being buried in mud.

So let’s cycle back to Punxsutawney Phil instead, and talk about a different movie: Groundhog Day.  I’ve never seen it, but from what I understand, it concerns a man who is forced to re-live the same events until he learns to deal with them better, or make better choices, or become a nicer person or something.  Every Candlemas, I take down the Christmas decorations, and apparently every Candlemas I am thrown into paroxysms of grief about it. Thus far, I appear to have learnt nothing from this repetition at all; but maybe now that I’ve blogged about it, it might stick in my mind for next year.  Even if I can’t stave off the waves of emotion, perhaps I can be a bit better prepared for them and batten down the hatches in advance.

In the meantime, a bit of perseveration seems as good a self-care strategy as anything else; so I shall just continue singing along with this rather awesome video:

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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Horse Sense

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I love horse riding.  I’ve only been riding for a couple of years, but it’s quickly become a very important part of my life, so much so that I wonder how I ever survived without it.  It isn’t a ‘special interest’ or a ‘passion’ in the classic autistic sense – I mean, it is special, and it is an interest, and I am passionate about it; but it’s a bit different from the months I spent getting no sleep because I was playing Fishdom or the time in my life I knew absolutely everything about the role of dispossession in the confessional conflicts of 17th Century England.  It’s considered a bit pejorative and un-PC to call these things obsessions, but to my mind, there is definitely something obsessional and almost addictive about them.  It is wonderful and exhilarating to have an all-consuming interest like that, and sometimes they can even be useful (guess what I wrote my Masters Thesis on…); but they do tend to take over your life.  When I realise that I am rapidly developing a new special interest, mingled in amongst the excitement is a heavy dollop of apprehension, because I know that this is likely to screw up my work life, my sleep pattern and possibly my bank balance for a while to come.

Horse riding is different.  Within ten minutes of getting on a horse for the first time, someone told me I was ‘a natural.’ I didn’t feel it then, but I do feel it now – which is not to say that I’m a particularly good rider (I’m not), but just that something clicks for me and somehow it just feels right.

So the hour a week I spend on horseback has become vitally important to me.  It’s the one time when I don’t worry about ‘passing,’ when I don’t think about making eye contact or saying appropriate things or stimming or not stimming.  It’s also the one hour of my week when I don’t think about my overflowing filing system or the forms I haven’t filled in or whoever in the Church happens to be cross with me at the time – although, bizarrely, I sometimes find that by the time I’ve finished, I’ve formulated some sort of solution or action plan about a seemingly intractable problem that I may have spent the week worrying about, but didn’t even realise I was thinking about while I was riding.

Increasingly, my weekly riding lesson has become sacred time – in both a general and a theological sense.  And, week by week, that time has stretched to include not only the riding itself and the time with the horses before and afterwards, but also the journey to and from the stables.  I deal with emails on the bus up, and listen to music on the bus home again; it’s a little routine of me-time, and it makes me deeply happy.

But today, finally, the inevitable happened.  I got on the bus, and sitting there waving at me was one of my Parishioners, with a free seat next to him.  Don’t get me wrong, I like this chap immensely; but nevertheless, it was painful to have to forego my usual bus withdrawal activities and spend the entire half-hour journey making small talk instead.

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On the way back from the riding school, a funny thought suddenly occurred to me.  Every single week, we spend about half the lesson working on the lunge, and that means that every single week I spend about half an hour talking to my riding instructor.  Not talk about leg aids and posture, but just chat – about anything from animals to the news to the other people who ride there, and sometimes even the weather.  Basically, I guess, we make small talk; and, do you know what? It doesn’t bother me a bit.

As I walked back to the bus stop, I tried to work out why it’s so easy to make thirty minutes of conversation while I’m riding and yet so difficult to do it on the bus.  To be fair, I like my riding teacher a lot; but then, I like that Parishioner a lot too.  There just didn’t seem to be any rhyme or reason to it.

I suppose the train of thought must have been making me feel a bit stressed out, because as I walked, I began to notice that I was stimming.  Just low-level stuff – a bit of flapping, a bit of thigh-tapping, a bit of running my hands along walls and suchlike – but definitely stimming nonetheless.  And then the answer hit me.

See, I’ve got this weird stim, something I’ve ever seen anyone else do.  It’s not an anxious stim; and, although I sometimes do it when I’m getting excited, it’s not exactly a happy stim either.  It’s more of a “something good is in process” stim – it happens when I’m close to figuring something out, or saying something that I think is important, or listening to something which is making ideas start firing off in my head. I have to be sitting down to do this stim, and what happens is that I start rocking from side to side, not moving my legs or any part of my torso, but shifting my whole upper body weight from one hip to the other in a rhythmical movement.  Sometimes this graduates into a gentle, almost imperceptible, rocking motion as I move my torso back and forth.

I’ve only been doing this stim for about two years, and I’ve never understood where I picked it up or what it’s all about.  Until today.  Because today I realised that whenever I’m formulating ideas or working stuff out,  I start riding an imaginary horse.

This is a marvellous discovery.  If I could just spend my entire life on horseback, the world would never be a problem again.

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Face Facts

imageRecently, one of the schools with which I’m involved played reluctant host to an Official.  We all know the type – someone who last taught actual children twenty years ago, but still feels qualified to tell other teachers how to teach.

I met the Official with other members of the committee first thing in the morning.  Pretty much the first thing he said was, “I won’t look at you much while we’re talking, as I’ll be writing down your answers.” This didn’t seem to wash with my colleagues, who commented afterwards that the Official didn’t seem to be very interested in what we were saying, as he never made eye contact with any of us. (Naturally, this had completely passed me by, although I did notice that if you played dot-to-dot with the flecks of dandruff on his lapel, you could draw an upside down vertical fish.)

Throughout the day, other people commented that the Official was rubbish at names, as he frequently asked the names of people he’d been talking to within the last hour, and even managed to mix up the names of the Head and Deputy several times.

But it wasn’t until the evening that the Official dropped his big clanger.  At the final meeting of the day, we were joined by two representatives from the local authority, who sat next to one another directly opposite the Official.  As the first rep introduced herself, the Official said: “We had two reps this morning.” The second rep shot him a look.  “Yes,” she said, “that was me.  I’m still here.”  There were a few moments of awkward silence, until eventually the Official said, “I’m sorry, I didn’t see your face behind your laptop.”

And then I secretly smiled to myself.

I don’t know whether the Official was on the Spectrum – or, if he was, whether he knew about it – but I did recognise the strategies, excuses and workarounds he’d been employing all day, not to mention that awful tumbleweed moment and frantic back-pedalling that happens when you realise you’ve made a dreadful gaffe.

Like the Official, I don’t tend to look people in the eye, although I fancy I’m a bit better than him at pretending I do, and I don’t think people often notice.  Not making eye contact certainly isn’t ideal for social interaction, but people tend to presume you’re nervous, distracted, busy or just a bit rude rather than completely weird.

Not being able to recognise faces is another matter entirely.  For some reason, it’s more socially acceptable to say, “I’m terribly sorry, I’ve forgotten your name” than it is to say, “I’m terribly sorry, I have no idea whether we’ve ever met before, and you could literally be anyone.”

The colloquial term for this difficulty is face-blindness, but I’m a fan of the official world, Prosopagnosia.  I like this word partly because it’s made up of two Greek words which remind me of happy days studying Patristic theology (I know, I need to get a life), but partly because I think it is a much better expression of what is going on for me.  Prosopagnosia is made up of the Greek words prosopon, meaning face, and gnosis, meaning knowledge.  In Greek, the prefix a- makes something a negative (like our English un-), so Prosopagnosia literally means ‘face not-knowingness.’

Prosopagnosia is not (at least, for me) a case of face-blindness; I can see that the person opposite me has two eyes and a nose, I can describe their features, and I can tell that they are different from the person standing next to them, even if they look similar.  It’s not that I perceive faces as a blank canvas.

Proof that telly is bad for your health.

Proof that telly is bad for your health…

My problem is that facial features just don’t seem to stick in my head.  I need to meet someone about ten times before I’ll be confident of recognising them again.  This is worse when I meet people out of context (which is a nightmare in my job, because I’m forever bumping into funeral families in the supermarket or shop assistants at funerals).  But it happens even when I ought to have some clue who they are; when a couple arrives in my office at Church and says, “We want to talk about our wedding,” I have no idea whether I’m meeting them for the first time, or I’ve met them once before and we’ve already got a date in the diary, or I’ve met them several times and I’m marrying them on Saturday.  When the actual wedding comes round, I can usually manage to identify the bride (big white dress, and all that), but the groom, the best man and various other blokes all unhelpfully turn up in identical suits, and often I have to hope for the best that I’m marrying the girl to the right guy.

Over the years, I’ve developed a number of ministry-related cheat scripts to get round this issue. I’d love to hear of any others, but here are a few of the ones that work for me:

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Lovely to see you, what can I do for you today?

This works well for people who just drop into the Parish Office (where I deal with weddings, Christenings and the like). What I’m really saying is, “I have no idea who you are or why you’re here,” but they don’t seem to notice.  People are usually quite helpful in replying with something like “we want to pay off some money towards the wedding,” which gives you a bit of a clue.  Occasionally, they’re a bit more vague and say unhelpful things like “it’s about Harry’s Christening,” but you can usually follow that up with “have we got a date in the diary?” which is more helpful than “have I ever met you before?”

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I’m terribly sorry, I’ve forgotten your name.

As it happens, I have a pretty good memory for personal details.  Once I know who you are, I can probably tell you what your middle name, what your kids are called, which street you live on and where you went on holiday five years ago.  But it is a lot more acceptable to forget names than faces, and once I’ve got the name straight, I can add other personal details into the conversation which usually convinces people that I really was paying attention the first time round.

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Remind me when the baptism/funeral/wedding is/was.

I keep all my files in date order for this very reason.  Nobody expects you to remember the date of their wedding in the same way that they expect you to remember who they are.  So, as soon as I know the date, I can go scrabbling through the files, and hey presto! there are their names.

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Hello, Rover

Bizarrely, I find it much easier to recognise dogs than I do people (I know of other autistic people who even have trouble distinguishing between dogs and cats, let alone one dog from another, so I feel blessed in this regard). If I already know the dog, I can usually work out who the people are. And if not, then I often find that talking to dogs or babies often makes adults volunteer the information.  Nine times out of ten, if you say to a baby, “this is a strange old church, isn’t it?” someone will follow it up with, “this is where mummy and daddy got married last year.” Bingo!

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As with the eye contact thing, I don’t know how convincing these workarounds actually are.  Back at the school, it was perfectly obvious to me that the Official had simply failed to recognise the rep (I mean, it’s not as if she had a laptop bigger than her head), but I don’t know whether other people noticed.  By that point in the day, most people had decided he was completely socially inept anyway, so maybe it didn’t matter.

But, generally, it does matter.  Despite the stereotypes, I (and most autistic people) do actually care about other people’s feelings, and there are probably few things more invalidating than feeling that somebody you’ve met before has no idea who you are.  At the very same school, a couple of years ago we had two new teachers who both joined at the same time, Paula and Ann.  Both happened to have similar hairstyles, height and build, and I had the devil’s own job working out which was which.  Recently, I was talking to Paula, and I mentioned that I sometimes had trouble telling people apart.  “I know,” she said.  “You called me Ann for about six months.  I presumed it was because we were both fat.”

Ouch.  Must try harder.

Saturday Night Fever

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So, Saturday night has come and gone, and yet again I got very little sleep.  In fact, the grand total of one hour’s sleep.  Much as I’d love to claim that this was because I was dancing the night away or enjoying good times with a gang of friends, the truth is rather less exciting.  I’m tired, cranky and feeling hungover, without having drunk a drop or danced a step.  And before you say, ‘Well, so what if you’re tired? Staying up late doesn’t matter on a Saturday,’ please just remember what I do for a living.  Sunday morning is not a good time for me not be firing on all cylinders.

The truth is, I never sleep well on Saturdays.  Sleep has always been a problem for me – I stay up far too late, and am pathologically unable to wake up in the mornings.  It’s not even as though I can claim it’s insomnia; once I do get into bed, it’s rare for me to be tossing and turning or lying there awake, and I almost never wake up in the night.  My trouble is that I just sort of forget to go to bed.  I often don’t realise that I’m tired, or if I do, I only realise it with half of my brain – and unhelpfully, that’s never the half that follows up the realisation with “hey, let’s go to sleep.”  Usually, I get caught up in work, or surfing the internet, or ‘just one more episode’ of Doctor Who, and before I know it, it’s three o’clock in the morning.  Or four.  Or five.

This happens to me most nights of the week, but Saturday nights – well, they are in a league of their own.  I know full well that Saturday is the one night of the week I really do need to be well-rested, but somehow that never seems to translate into the willpower to finish my work at a sensible hour, get a bit of downtime and then get myself into bed.  And even if I do manage to catch a few hours of shut-eye, it’s rarely good quality, useful sleep that makes me feel rested or refreshed.

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This is a nice graph from an iPhone app called Sleep Cycle, which promises to measure your sleep rhythms and wake you up at an optimal time.  It’s got rave reviews on the App Store from people who say they have never been woken up by any alarm clock ever, but now leap up from their beds every morning with a spring in their step and a song in their hearts.  I could sleep through the proverbial bomb going off in my bedroom, so, despite my scepticism, I decided it was worth a try.  Actually, it doesn’t work.  I still sleep through the alarm, just as I always have done, but the app does play nice ambient noise while you’re falling asleep, and give you neat graphs like this when you wake up, so it wasn’t a total waste of 69p.

Anyway, I digress.  The point is, as you can see, I don’t sleep well on Saturdays.  I’ve always taken longer to wind down on a Saturday, but at the moment I’m only getting one or two hours in bed at most, which is patently ridiculous and unsustainable.  It’s not as if I’m even just pulling an all-nighter to get stuff done for Sunday (although that’s not unknown either).  This Saturday, for instance, I was up all night reading internet articles and blog posts about Perseveration.  No, the irony is not lost on me either.

The bizarre thing is, I’m not even stressed out about Sunday mornings any more like I used to be.  In days of old, there used to be a couple of difficult folks in my congregation and I’d spend hours lying awake worrying about what they would say or do the next day – but not any more.  In my previous Parish, I didn’t have anyone to check that I was out of bed at the right time, so I would stay up all night just to make sure I didn’t sleep in – but that’s not relevant any more either (thanks, long-suffering Waker-Upper).  So in the past, not going to bed on a Saturday night was – well, if not entirely healthy, at least functional and vaguely rational.  But now it’s neither of those things.  I just can’t seem to break out of the pattern.

Thanks to my marathon night of web surfing, I now know that there are at least two broad definitions of Perseveration.  (Well, probably more than two, but all this vocab is still new to me, so let’s not complicate the issue too much.) Usually, when people use the term Perseveration, they mean it in the sense of getting caught up in an action or a special interest, to the exclusion of everything else – like, for example, spending all Saturday night reading blog posts.  But Perseveration can also mean continuing to carry out an action or behaviour pattern even when it’s no longer relevant, useful or functional – like, for example, spending all Saturday night reading blog posts.  So, it turns out that I have been perseverating by perseverating.  And what am I perseverating about? Perseverating.

I hereby invent the term Meta-Perseveration.  Anyone who knows how to break this insidious cycle should feel free to get in touch.  Preferably before next Saturday night.