Balancing Acts

image

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.

Living in a Box

So, this blog has been on holiday.  Quite a long holiday, really.  I was going to tell you all the reasons why, but when I sat down to write them out, I realised that they were really quite tedious (Christmas, blah; autistic inertia, blah; lost yet another house cleaner, blah blah blah).  I figure that if I am bored at the thought of typing them out, you will certainly be bored reading them.  So let’s move on.

Let’s move on here:

Hayward Quad

When I was a first year undergraduate, a few years (ahem, decades) ago, this is where I lived.  Not in the lovely 19th Century brick-built part of the College which you can just see reflected in the windows, but in this Seventies concrete and glass monster, nicknamed “the Goldfish Bowl.”  Each room had one wall entirely made out of glass (two, if you were particularly unlucky), which sounds like cutting-edge design on paper, but in reality was a bit of a nightmare.  The standard-issue blinds were forever snagging or breaking, and they had the unique quality of being translucent, so if you didn’t want to put on a shadow puppet display for the entire College, you had to get undressed in the dark.  The rooms were – naturally – too hot in summer and too cold in winter, and you could hear literally everything going on outside.  When you consider that the large circular spaceship-like building at the front of the photo is the College bar, you start to realise that living in this particular block wasn’t always a lot of fun.  This is presumably why it was always reserved for first years.

I haven’t thought about this place for years, but I was reminded of it by this story on the BBC, which dates from November but appeared on my Facebook feed today. A supermarket worker lived inside a glass box in her supermarket for 100 hours to raise money or awareness or something for – and I quote – “people that have got autism.”  There’s a video on the BBC website where she talks about it, but you might not be able to access it if you’re outside the UK.  If so, then count yourself lucky; I had three attempts before I could watch it all the way through, because it made me so angry.

Now, I don’t want to appear curmudgeonly, because no doubt this woman had the best of intentions; she decided to pull this fundraising stunt after seeing a child having a meltdown in the supermarket and being shocked that people were tutting and being judgemental.  But she seems to have hit upon the idea of living in a glass box because it’s isolating.  This, she tells us, is “how an autistic child feels, you know, on a day to day basis.”  Laying aside the question of how she can possibly know how an autistic child feels (presuming, indeed, that all autistic children feel the same way as each other all the time), this is quite an interesting insight into how non-autistic people seem to view autism.  Clearly, she believes that the primary and worst experience of being autistic is social isolation.

Well, I’ve had my fair share of meltdowns, but I can honestly say that none of them have been caused by a feeling of isolation.  Fluorescent lighting, yes.  Vibrations from the supermarket trolley, yes.  Morrisons having moved the Monster Munch – to my shame, yes.  But isolation?  Really not.  Generally speaking, if I’m heading towards overload, a bit of isolation makes things better, not worse.

If she really wanted to know what it might be like to be autistic, she could have installed strobe lighting in her glass box, doused the walls with a mixture of bleach, perfume and vomit and then had someone play the 1812 Overture at her through loudspeakers whilst attacking the floor with a pneumatic drill.  That might have given her some idea of why autistic people sometimes melt down in supermarkets.

There is only one way in which I can imagine that living in a glass box in a supermarket is anything like being autistic, and it is the exact opposite of isolation.  Like living in the College ‘Goldfish Bowl,’ it’s the sense that you can never wholly get away from the world, with all its overpowering sights, smells and sounds.  Added to that is the sense (perhaps more applicable to autistic adults than children) that you are always on display, always having to ‘pass.’  In public, at work, sometimes even at home, it’s almost impossible to let your guard down, relax and be your own autistic self.

The delicious irony to this whole news story is that the box woman was supported in her efforts by the mum of a five-year-old autistic child “with a lot of sensory issues.” (Show me an autistic person who doesn’t have a lot of sensory issues….)  With the money raised, this mum was able to buy her son some sensory stuff.  One piece of equipment in particular has, she reported, completely improved her son’s quality of life.  What was it? I hear you cry.

It was this:

dark den

Apparently living in a box isn’t always such a bad thing after all.

Things That Go Flap In The Night

image

Beware! This post carries a Trigger Warning for you if you’re scared of werewolves, pumpkins or autistic children.

Today I am suffering that peculiar kind of hangover-cum-exhaustion which inevitably hits the day after a meltdown.  Even getting dressed seemed like a bridge too far, let alone venturing out into the world; but today was also unseasonably warm and sunny, and I desperately didn’t want to waste the nice weather by staying cooped up in the house.

Eventually, my friend and I agreed on a compromise, and decided on a short walk down to the harbour to look at the boats, which is something that usually makes me feel calm and vaguely contented.  So I pulled on an old pair of jogging bottoms and ignored the fact that my hair needs washing, and we set out, taking the long way round so that we wouldn’t meet too many people that I might have to talk to.

In all the excitement of feeling like I wanted to die, I had completely forgotten what day it was; and it was only after passing a young woman with her face painted like some sort of freaky undead rag doll that I remembered that today is Hallowe’en.

Hallowe’en just isn’t that big of a thing in England, compared to the USA, so it doesn’t tend to provoke the same strong reaction from church folks (as in, I’ve never heard an English church leader tell a bunch of kids that Harry Potter should be executed, like they do on Jesus Camp).  Most of the kids in my Church will be dressing up as witches or zombies tonight and eating a shed load of Haribo Fangtastics, and then they’ll be dressing up as Saints for Mass on Sunday and receiving Jesus in Holy Communion – and frankly, I don’t think that the two things are particularly incompatible.

Human beings have told each other scary stories since time immemorial, and most of the games and stories we associate with early childhood have a scary element (I challenge you to think of a fairy story which *doesn’t* feature murder, violence or child abandonment).  Stories about goblins, witches and things that go bump in the night play an important psychological role for us: they allow us to express some of our deepest fears in a safe way, at arm’s length.  We play peekaboo with babies, and teach them that fun can be a bit scary, but scary can be fun.  Six-year-olds reinforce this lesson amongst themselves by jumping out on each other and shouting ‘Boo!’ – a game which provokes fear and laughter in equal measure (unless, of course, you’re autistic, and still find this enterprise by turns baffling and terrifying, even in your late thirties….).

So, by and large, I think that Hallowe’en is probably quite a healthy thing for children.  In some ways, it even expresses a kind of ideal for how our society should be.  After all, wouldn’t we rather tell our kids spooky stories than have to issue dire warnings about predators on the Internet?  Shouldn’t they be able to dress up as monsters and knock on the doors of their neighbours rather than having to stay locked up at home because their neighbours might be monsters?  Wouldn’t it be better if every eight-year-old girl’s first introduction to dress-up and make-up was pretending to be Count Dracula rather than the everyday clothing and cosmetics marketed to little girls which make them look like miniature porn stars?  Surely we’d all rather live in a world where you just put a pumpkin in the window to keep the goblins away, rather than one in which you have to put another deadlock on the door to keep the burglars out.

image

But there is an irony in our modern observances of Hallowe’en.  When our ancestors wanted to find safe ways of expressing their fears, they told stories of things that were completely different and other – werewolves, boggarts, fairies and ghouls.  They told their children these stories precisely to emphasise the distance between what is scary and what is safe – the wicked witch versus the loving mother, the ravenous wolf versus the kindly woodcutter.  But the stories we tell ourselves nowadays to tittilate or terrify us in the cinema or in books are of everyday bogeymen: the high school chemistry teacher turned drug baron, the psychiatrist turned cannibal, the sharp-suited businessman who enjoys beating up his partner for kicks.  And what do we do for Hallowe’en?  There aren’t many werewolf or monster dressing-up kits available to buy in the shops, but last year two British supermarkets did try to run a delightful ‘Mental Patient’ costume – because clearly there’s nothing more terrifying than someone who’s got a prescription for Prozac.

In moving away from telling scary stories about The Completely Other, we have demonised the Almost Like Us But Not Quite.  It hardly needs spelling out that this has dire implications for disabled people, non-heterosexual people, members of minority ethnic communities or minority faiths, and basically anyone who doesn’t quite fit the mould of ‘normal.’

Remember, folks, the Weeping Angels are only scary because they're weeping.  Probably a bit depressed or something.

Remember, folks, the Weeping Angels are only scary because they’re weeping. Probably a bit depressed or something.

Back at the seafront, our seagull feeding was interrupted by a group of children walking along the sea wall.  Amongst them was a boy of about nine or ten, inexplicably wearing a cardboard pirate hat and trailing slightly behind his companions.  He was obviously having to concentrate quite hard at balancing on the wall, but he seemed happy enough.  Then suddenly from quite a way behind us came a blood-curdling cry:

“John!  JOHN!  You’re flapping.  You need to stop flapping!”

Neither I nor my friend had actually noticed John flapping (and, for obvious reasons, we’re both fairly attuned to such things), but clearly this public display of not-normal was causing his mother deep distress and embarrassment.  She had soon caught up with him and was berating him for flapping, all the while glancing around to check that no-one else was watching, whilst talking in a voice which must have carried halfway across the county.

Poor John was trying to listen to his mother, and stop flapping, and explain to his mother that he had pins and needles and needed to “flap them out,” and keep up with the rest of his group, and walk along the wall, all at the same time.  Within thirty seconds, the inevitable happened: he lost his balance, tumbled off the wall and landed on the ground with a shriek.  Not just any shriek, mind you, but the Autistic Shriek; that high-pitched noise that we’re all supposed to have grown out of as pre-schoolers, but which I still make from time to time, and maybe you do too.

As the boy was lying on the ground like an upturned beetle, all the adults in his group stood around him in a tight circle.  Nobody offered him a word of comfort, or a hand up, or even that faux-jolly “no harm done” thing that grown-ups do when kids fall over.  They all just stood around, looking horrified at The Shriek.  “There’s no need to make that noise, John.  You’re not dying,” said his father, in a tone of voice which rather suggested that he wished the opposite were true.

As the adults continued to create a human screen around this poor kid, his mother looked furtively around, clearly praying that nobody had noticed her autistic child doing autistic things.  I quickly hid behind my friend, because by this time I was flapping like mad, and was seized with the irrational thought that these people were about to throw both me and their child into the sea as human sacrifices to the gods of normality.

Eventually, the boy managed to get up his own, and the whole group moved off, while my friend steered me off in the opposite direction, until we were safely far enough away for me to flap and my friend to splutter and swear in indignation.  But when I looked back at the boy and his family, I could just make out that his hands were flailing out at an older girl, and his father was moving in to restrain him.  No doubt that episode will go down in family history as another incident of challenging behaviour, an unprovoked attack on a sister or cousin, another lovely family day out ruined by our dreadfully difficult and frightening autistic child.  I’m sure that nobody will stop to consider that John was actually happy before they made him stop flapping.

That attitude was the scariest thing I have seen this Hallowe’en.  Give me a Dalek any day.

Bigger On The Inside

TardisI am an Anglican Parish Priest, and I am autistic.

Since this is a blog about both those things, but more specifically about the second, I suppose I should start with one of those generic posts called “What is Autism?”

But, honest to goodness, I can’t be bothered. That stuff is all over the Internet, and any blog written by somebody who is actually Autistic will probably have a good outline. And, truth be told, all this stuff is a bit new to me.  Not Autism – I’ve always been autistic, and I’ve been living with me all my life – but what it actually means and looks like and what the right words are to describe it.

So let me put it this way: I’m Tardistic – bigger on the inside.

What you see if you look at me is a fairly normal person.  I walk and talk and usually manage to dress myself in vaguely acceptable clothing. I have qualifications from a prestigious university, and I hold down a full time job – and sometimes I’m even quite good at it.  If you passed me on the street, you might not even notice me at all (unless I was wearing a cassock, which is a thing I sometimes do).

But if you looked harder, you might begin to think that I am a bit quirky, slightly out of place, like a 1950s police box in 21st Century England. I tend to flap my hands about when I’m stressed out or happy; I jump about like a Labrador puppy when excited.  I get a bit hung-up on routine, I like certain objects to be arranged in certain ways, I can’t be doing with different foods touching each other on my plate.  In conversation, you might be impressed by my vast knowledge of apparently random facts, or you might wonder exactly why I am regaling you with more information that you ever wanted to know about one particular thing or the other.  I might repeat your words back to you, answer in quotations from films or song lyrics, and sometimes say things which appear non-sequitous, blunt or just plain rude. You might even notice that I don’t always look you in the eye (newsflash: I hardly ever look you in the eye; I’m just really good at making you think that I do).

And then, if by some miracle (or possibly disaster), you got the key and stepped inside the Tardis, you really would find out that I’m much bigger on the inside. On the inside, where nobody else really gets to go, is where pretty much all electrical lighting is too bright, and the sound of sweeping makes me feel physically sick.  On the inside is where the processor is working overtime, trying to guess what you are thinking or feeling, because it’s really not obvious to me at all.  On the inside is the translation matrix, working at full speed to analyse each word you say, each gesture you make, and compare it to a databank to see if I can make sense of your behaviour in the light of everything I have ever learnt about human behaviour. It’s mostly on the inside that all this high-energy processing starts to take its toll and melt down (wonky navigational system, and all that).

For every sermon I preach, every Mass I say, every person I meet and every strategy I devise so that they don’t realise I can’t actually recognise their faces until I’ve met them 10 times, there is a price to pay. Meltdown is not pretty. It’s a crying, shouting, skin-scratching, head-hitting ball of … actually, I don’t know what of, because I’m not even good at recognising and labelling my own emotions, but rage, despair and frustration would probably be a good start. It’s not something I’d ever want my Parishioners to see; and I’m fairly sure that it’s not something most people would dream that their Vicar did.

And yet, let me cycle back to the start of this post. I am a Parish Priest, and I am autistic. I don’t actually know of any others, but Church of England clergy are so well known for things like introversion, attention to detail, love of routine, aversion to change and wearing socks with their sandals that I am going to go out on a limb here and say that I am not the only one.  Not by a long shot.

Think about what this means, just for a second. If you know a Vicar, or a pastor or minister or rabbi or whatever, there is every chance that he or she might be autistic too. Yes, that lovely Chaplain that visited your granny in hospital.  Yes, that jolly young curate who takes assemblies at your daughter’s infant school.  Yes, that caring Priest who found just the right words to say at your father’s funeral and spent hours with you counselling you in your grief.

Autistic people are not Daleks. We are not just empty tin shells with all the emotion ripped out, gliding through this world collecting train numbers and looking for normal, well-adjusted people to exterminate. Oftentimes, we actually do have a clue what you might be thinking and feeling, simply because we work so bloody hard at figuring it out. OK, we might not be archetypal ‘people persons,’ but that doesn’t stop us being great teachers, scientists, social workers, psychologists, librarians, parents, actors, shop assistants – and yes, even clergy.

As I write this, at the end of a marathon three days of extreme crapness which included two major meltdowns, I am only too aware of how being autistic sometimes limits my ability to be the Priest I want to be.  But I also know that my autistic attention to detail, unswervability and keen sense of truth and justice all make me a better Priest than I would be otherwise, and I really do believe that those autistic gifts are God-given.

Whatever our personalities, neurologies, abilities or disabilities, every single one of us is fearfully and wonderfully made in God’s image, to God’s glory. And so I can truthfully say that I am more than the sum of my symptoms, more than just the deficits or the abilities, the challenges or the joys.  I am proud to be Tardistic – bigger on the inside.