Does She Take Sugar?

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I am unwell.  Not the kind of unwell that comes with sneezes or spots or buckets of sick, but that general sort of unwell that doesn’t really have any particular symptoms, apart from generally feeling quite crap.  This is known in common parlance as being “a bit under the weather” or “washed out,” and in medical terms I think it is called malaise.  It’s the kind of thing that, were I the kind of person that ever goes to doctors, would probably result in me being sent for blood tests that would all come back inconclusive.  I don’t really know what feels wrong, except that something doesn’t feel right.

For clarity (or should that be confusion?), I ought to point out that this feeling of “something isn’t quite right” could mean I’m very tired, or it could mean I’m coming down with the flu, or I suppose it could potentially mean I’ve got something hideous like blood poisoning.  Most other people, so I’m led to believe, tend to know what feels wrong with them, even when they don’t have any visible signs like a rash or a cough.  I, on the other hand, consistently have trouble distinguishing between a sore knee, a bit of a cold and raging toothache.  For some reason, I just don’t seem to be able to read the signals from my own body.

As if that weren’t bad enough, I also struggle to distinguish illness from other bodily sensations, like emotion, hunger or even just needing to pee.  All of these signals seem to land in my brain as the same muzzy feeling of something being a bit ‘off.’  I quite often report to my friend that I feel ill, or sad, or hungry; but to be honest, they all feel the same to me, and I’m really just playing roulette and choosing the word that might be right, rather than having any sense of which one it actually is.

So why, you might be wondering, can I say with certainly that I’m unwell?  Why not hungry or sad or anxious or premenstrual?

It’s because I’m taking sugar in my tea.

Yeah, I don’t understand it either.  But sometimes (maybe twice or three times a year), I’ll just go suddenly from not taking any sugar in my tea to taking three heaped spoonfuls.  At any other time, nothing in the world could entice me into drinking sweet tea; but then, all of a sudden, something completely changes, and it seems as impossible to drink tea without sugar as it normally is to drink it with sugar.  When I’m in the sugar phase, I literally cannot imagine taking my tea without sugar, any more than I can imagine what it would be like to be a dinosaur or a fish.

This has been going on for a number of years, but up until recently, I never have been able to work out what it meant. (Who says autistics are good at pattern recognition?)  It was my friend who finally spotted that my sudden cries of “But I always take three sugars!” often happened a day or two before I came down with a nasty cold or collapsed into that level of fatigue that actually makes it impossible to get out of bed or use my brain in any meaningful way.

I’d love to know whether there’s actually any biological basis for my sudden need for sugar, in the same way that pregnant women often crave the food items which will give them exactly nutrients they need.  As a general rule, I don’t really experience hunger, and my default position is that the thought of all food turns my stomach, so the only times I take the initiative to eat without being prompted are when I have a strong craving for something or the other.  But the sugar thing is different – I never actually crave sweet tea; but if I’m given a cup of tea while I’m in this phase, then I literally cannot drink it without three sugars.  Whenever this happens, I’m always reminded of that old fashioned idea that if someone has had a shock or a grief, you should give them hot sweet tea.  As far as I can tell, everyone now thinks this is complete rubbish; but I wonder whether our grannies weren’t onto something after all.

I realise that it’s not exactly healthy to take three sugars in your tea (especially if you drink as much tea as I do); but now that I’ve got wise to what it means, I’m very grateful for this warning system, which tells me that something is going on which is a bit more than just being a bit tired or sad or hungry.  I now know that when the sugar thing happens, I need to cancel all my non-essential appointments and spend the day in my PJs if possible, because I am (or am about to be) really not very well.

Musing on the sugar thing reminded me that there used to be a BBC radio programme about disability called “Does he take sugar?”  The title was a wry reference to the way abled people often equate disability with incapacity and address their questions to a disabled person’s companion or carer rather than to the person themselves.  This attitude was, of course, extremely prevalent in the late seventies when the programme first started, but it’s not a whole lot better today.  A few years ago, I ended up having to use a wheelchair for a little while, and I was genuinely amazed and appalled by the number of people who simply talked over my head, literally and metaphorically.  But there is also a little irony for me in the title, because although I’m perfectly able to answer questions about vertical eschatology or Early Modern attitudes to witchcraft, questions like “what do you want for lunch?” and “are you in pain?” leave me genuinely stumped.  I actually do need somebody else to tell me that I’ve got a headache or that I’m feeling a bit blue.

Book learning, I get.  Physical sensations, not so much.  In fact, the only thing I really know for certain is that today, I definitely do take sugar.

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:

Home Truths

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Today, it’s exactly seven years since I became Vicar of my present Parish.  It’s not exactly an occasion which engenders a lot of hoop-la, although somebody did very kindly buy me cake (which, of course, I have already eaten).  Anniversaries, however, do provoke a certain amount of reflection and resolution; so today I’ve been trying not to beat myself up about all the things I haven’t achieved over the past seven years, and concentrate instead on some of the things I might do in the year(s) to come.

Amongst all the things I haven’t quite managed during the last seven years, the one that looms largest is my failure to move into my own Vicarage. On one level, that’s a daft thing to day – I mean, I do live here; I have a bed and a telly and stuff.  But conceptually, this house has just never really become my home.  It feels more like a student digs than somewhere where I feel relaxed, or comfortable, or however people are supposed to feel in their own homes.  I still feel as if I’m squatting in somebody else’s house.

In fairness, I haven’t made a great effort to make this space my own.  Most of the rooms are still undecorated,  a lot of my stuff is still in boxes, and the only things that have places are there simply by virtue of the fact that I haven’t bothered to move them.  Like, why wouldn’t you keep books in the garage and a lawnmower in your living room?

I’ve always presumed that my failure to move in is just because I’m a bit lazy and crap, but recently I’ve come to realise that this is a big old autistic issue.  The flip side of having a good eye for detail is a general inability to see the metaphorical wood for the trees; and I can’t think of the Vicarage as a home – it’s just a huge, unwieldy collection of rooms and spaces and windows and stuff.  I can’t even begin to think about how my whole bedroom should look, because I’m too busy trying to rearrange my sock drawer or obsessing about the fact that the light switch is a bit skew-whiff.

My other problem is that I’m actually a bit rubbish at working out what I like or how I feel.  Other people seem able to sense intuitively whether a room makes them feel comfortable, or stressed, or relaxed, or whatever.  I often don’t notice how I feel (until it’s too late, and I’m hitting meltdown); and even if I do notice how I feel, I’m unlikely to figure out *what* is making me feel that way.

Thankfully, help is at hand, in the form of this excellent blog post from kmarie about creating an autistic-friendly home.  I am at least sufficiently self-aware to realise that I would be totally overloaded living in her home, but I have found the basic principles at the start of her post really helpful.  Rather than trying (and failing) to imagine how the house should look, I’ve started the process from a completely different place, asking myself what I value, what I need and how I want to feel when I’m at home.

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I started by writing out kmarie’s questions on separate pieces of paper and sticking them on the kitchen wall.  Over the next couple of days, I added things to the categories as they occurred to me, with a little help from someone who knows me well. (“What things spin me into a meltdown?”  “Bloody everything.”)

Once I started thinking in this way, and could see my thoughts written down, I found that other home-related  things started to occur to me.  I taped another piece of paper onto the wall so I could record them too.  Some of them were abstract principles, like the fact that animals and natural things make me feel good, and some were entirely practical, like the realisation that I need two bins in every room to prevent me just chucking rubbish on the floor.  One of the best revelations was that I really can’t cope with multi-purpose space – I need separate areas for sleeping, eating, watching TV, etc.  And yes, I know that this is totally obvious to everyone else in the known world, but I’ve never really understood it before.

Along with a new understanding of why most homes have separate bathrooms, kitchens and bedrooms, I started to realise that the different rooms in my house should perform different emotional or sensory functions too.  If I’m overloaded, I want to burrow and hide in order to feel safe, so I would benefit from a ‘decompression room’ which is dark and warm and filled with sleeping bags, blankets and cushions.  Conversely, when I’m not overloaded and am just getting on with life, what I yearn for is nature and sunlight, so my working and relaxing spaces should be light, airy and relatively uncluttered.  At that point, I drew a very shoddy and completely topographically inaccurate floorplan for each storey of the house, and started to ‘brainstorm’ in each of the rooms with functions, feelings and sensory needs:

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(In the interests of checking my privilege, I should acknowledge that I am incredibly blessed to have a relatively large house to play with, and am unfettered by a partner, kids or housemates who might selfishly want their own needs taken into account.  I did, of course, carry out this whole exercise around the non-negotiables of where each of my cats likes to sleep.)

Eventually, I was able to come up with one or two words to sum up each room.  My brain seems to like this much better than simply trying to work out what ‘bedroom’ or ‘study’ means.  So now I have a house plan with rooms called things like ‘cosy/private’ and ‘restful/tranquil.’  For reasons I can’t explain, this has allowed me to start imagining the house as potentially a home, in a way which the question ‘what things go in a living room?’ never has.

Having done all this (probably quite autistic-specific) preparatory work, I finally reached the point at which most people start: actually thinking about designing the rooms.  Here, I borrowed another idea from the Internet and created mood boards.  Obviously, I didn’t have any actual boards, or free table space or floor space, so I improvised and used the kitchen cupboards.

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I cut out pictures from magazines I had lying around, and from some lifestyle magazines which a Parishioner gave me for this purpose.  The result is a slightly odd mixture of interior decor and horses, but I just went with images, colours or typefaces that evoked the different concepts I want from my rooms.  So, the cosy/private room is currently made up of Christmas, sticky toffee pudding and spaniels, whereas my restful/tranquil bedroom is apparently going to have to feature a swimming water vole.

To be honest, I think I’ve probably done this bit wrong, because when you look at other people’s mood boards on Pinterest or whatnot, they’ve included sensible things like carpets and bedlinen.  I haven’t quite worked out yet how I’m supposed to get from a puffin to a living room, but I’m sure I’ll get there eventually.  The important thing is that for the first time, I feel as if I’m in with a chance of taking control of the Vicarage and creating some space which works for me, rather than trying to live in somebody else’s house.

My long-suffering Churchwarden largely agrees.  He doesn’t really seem to get the conceptual way I’ve arranged the pictures (“You want a horse, some snow and a coffee jar?”) but he agrees that it’s about time I moved into the Vicarage and made it an autistic-friendly and me-friendly space. There’s only one problem, he says: “If you ever move, we’ll have to make damn sure the next Vicar is autistic too.”

#sorrynotsorry

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.

Adventures in Time and Pace

image

So it’s four o’clock in the morning, and I’ve been up all night watching the BBC coverage of the American midterm elections.

Why? You might ask.  And actually, that’s a really good question.

I don’t care about the American midterm elections.  I’m not affected by them in any way whatsoever.  I didn’t even know they were happening until the coverage started. I have no idea what the keystone pipeline is, or why Georgia and Louisiana have a different voting system from everyone else, or what the difference is between senators and governors.  I don’t know why the right wing party is red and the left wing party is blue, which is clearly the wrong way round and makes me irrationally angry.  I have absolutely no idea why Iowa is important, or even where it is.  In fact, the only thing I know about Iowa is that Riley Finn came from there, and I spent all of seasons four and five hoping that he would be eaten by a giant hell-fiend so that Buffy would never have to sleep with him again.  Perhaps someone will introduce him to the new senator who’s good at castrating pigs.

Anyway, I stayed up to watch the election coverage because that’s what I do.  I’ve kept an all-night vigil with the BBC for every General Election and local council election, and even some local British elections I wasn’t voting in; so tonight something in my brain went, “Ooh, election; must stay up and watch.” Despite the fact that I don’t understand this election.  Despite the fact that I don’t care about this election.  Despite the fact that I am going to feel like crap in the morning.

This is not just a case of getting absorbed in something and staying up too late (although God knows that’s part of it).  It’s actually a problem with time.  There’s a part of my brain that registers what time it is, but somehow I can’t make the cognitive transition from random information to useful concept.

This has catastrophic implications for leaving the house:

It’s 8:30.  You need to leave at nine.
Uh-huh.
It’s 8:45.
Yep.
It’s five to nine.
I know that, I’ve got a watch.  Do you think I’m an idiot?
OK, it’s 9:15. You were supposed to leave quarter of an hour ago.
WHAT?!  WHY DIDN’T YOU TELL ME?

.

Time ought to be a me-friendly concept; it’s logical, regular and predictable, which are things I like.  But somehow I’ve never mastered it.  I couldn’t read a clock face until I was 12, and even with digital clocks I still get a bit confused about how many minutes are in an hour or seconds in a minute.  I’ve had a lot of microwave disasters in my life.

Even without the minutes-and-hours thing, I just don’t seem to experience time the way other people do.  I know that the passage of time isn’t exactly a fixed experience for anyone (as in, an extra five minutes in bed lasts about 30 seconds, whereas five minutes at a cold bus stop goes on for an hour and a half).  But I really struggle to calculate how much time has passed, or estimate how long I need to do anything.  Despite a lifetime of evidence to the contrary, I’m still convinced that I can get up, get dressed, drink a cup of tea and get out of the house in less than ten minutes.

As stupid as it sounds, I’ve never quite mastered the idea that if I do this thing that takes an hour, that will make me an hour later for the next thing. I experience time as something totally fluid, infinite and malleable, which is obviously crazy, because who in the world thinks like that?

My inability to grasp everyone else’s linear perspective means that my life tends to swing between inactivity and blind panic.  In many ways, the Priesthood is a wonderful life for someone with wonky executive function and time management issues, because I don’t have to be in an office at 9:00 am every day, and I can take an hour here or there to decompress if I need to.  But it does require you to be able to create and manage your own work schedule, which is something I spectacularly fail to do.  Yes, of course I can email the funeral directors and watch the American election coverage and update this blog and have a shower and get nine hours sleep all in the same night.

Which is why, dear reader, tomorrow I will be tired, panicked and excessively cranky.  If you happen to see me coming towards you, you should probably take a leaf out of the Doctor’s book and run.