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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ASD, ASD and ASD

imageNovember 1st is All Saints’ Day.  It’s also Autistics Speaking Day, when blogs and social media will be full of posts about Autistic Spectrum Disorder.

I like acronyms, and this holy trinity of ASDs seems too good to pass by.

The trouble is, there isn’t an official Patron Saint of Autism or Autistic people (sadly the Church has been a little slow in canonising The Twelfth Doctor).  Various Saints have been suggested, but they’re usually either Saints connected with mental illness, like S. Dymphna, or Saints who deal with generic healing, like S. Raphael or S. Philomena.  If you’re interested in celebrating Autism, rather than trying to pray the Autism out of people, these are probably poor choices.

There aren’t even any Saints who definitely were Autistic, because of course Autism has only been recognised and defined relatively recently.  But there have been plenty of Saints who weren’t exactly “normal,” and some whose life stories feature events and character traits that might just ring a bell with some of us.  I’m not a fan of armchair diagnosis of historical figures, but sometimes you have to take your kicks where you can find them.  So, especially for ASDx3, here’s my personal, partial and totally unofficial shortlist of Patron Saints of Autism:

imageSaint Francis of Assisi

Yeah, yeah, we all know about S. Francis.  Friend of animals, wearer of sandals, hippy eco-warrior and peace campaigner eight hundred years before his time.  But honestly, he’s much more interesting than that.

Francis didn’t just like animals, he totally identified with them.  He regarded them as his brothers and sisters, and often spoke to them (and even preached the Gospel to them) as equals.  They often seemed to sense a connection with him too, and I guess you could say he was an early wolf, sheep, rabbit, bird and cricket whisperer.

Human beings, on the other hand, seemed to cause him more trouble.  He spent most of his life trying to escape them, and when he did speak to them, especially to the rich and powerful, he was always truthful, and often blunt to the point of rudeness.  Sound familiar?

There are intriguing hints towards atypical sensory processing too.  Francis seems to have had a very high pain threshold (he once had his eyes cauterised with red hot firebrands, and claimed not to feel any pain), and he frequently rolled or lay half-naked in the snow.  In fact, he took many of his clothes off so often that you have to wonder how much was religious fervour and how much was not being able to cope with the rich brocades of his youth and the scratchy habit of his later life.

Francis had two special interests in his life, God and poverty, and he was pretty obsessional about both.  The sound and feel of money made him feel physically ill, and he insisted on radical poverty for both himself and his brothers, not letting them own so much as a prayer book.  But, paradoxically, he was also a bit of a hoarder.  He collected every scrap of paper he could find, and wouldn’t let anyone throw them away before he’d examined every inch, just in case the Name of Jesus was written somewhere.  As Francis was partially sighted and could barely see to read, that must have resulted in some very over-stuffed pockets and some very frustrated friends.

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imageSaint Christina the Astonishing

Ah, there she is, up a tree.  And that’s by far not the strangest place she ever ended up.

Christina was born in twelfth century Belgium into a peasant family.  She was orphaned at some point in her childhood or teens, and brought up by her older sisters.  As a young woman, she suffered some sort of seizure or catatonic episode which convinced everyone that she was dead.  But, in the middle of her funeral Mass, she suddenly woke up and apparently flew out of her coffin (and yes, I do mean literally flew, as in to the rafters).  She announced that she had seen heaven, hell and purgatory, and that she would spend the rest of her life doing God’s work.

What Christina actually spent the rest of her life doing was being a bit… er… neurodiverse.  She didn’t like to be around other people, as she said she couldn’t stand their smell, and she often crawled into small spaces like cupboards and ovens.  She seems to have had a fascination with running water, and spent large periods of time in the river or staring at the waterwheel.  She would even ride the waterwheel, apparently enjoying the sensation long before Ferris wheels were invented for our vestibular pleasure.  She spent hours balanced precariously on hurdles, rolled up into a little ball or spinning on one foot.  Like S. Francis, she was apparently hyposensitive to pain and cold.  She seems to have had an interesting relationship with her own body; on one occasion she was observed kissing and talking to her own feet, as if she had just discovered where they were for the first time.

Even in her own day, Christina divided opinion.  Some people thought she was a Saint, some people called her a lunatic, and some even thought she was possessed.  Occasionally somebody took it upon themselves to tie her up or restrain her ‘for her own safety,’ once even breaking her leg, but she always managed to escape, and often fled up trees.

Surprisingly for someone who lived as a homeless beggar in Mediaeval Europe and put her body through some fairly extreme situations, Christina lived well into her sixties or seventies.  She spent her final years living in a convent, where – despite her wild reputation and unusual behaviour – she was always perfectly obedient to whatever the prioress asked of her.

Christina was never formally canonised as a Saint by the Church, but she has always been venerated in her local area, and now across the world.  Nick Cave even wrote a song about her, which (like most of his songs) is pretty darn awesome:

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imageSaint Joseph of Cupertino

Yes, more flying.  I know.  Just go with it.

S. Joseph of Cupertino is best known today as the Patron of pilots and astronauts, thanks to his unusual habit of levitating during prayer.  But all the holy medals and this rather sickly painting with cherubim don’t really do justice to Joseph’s troubled and troubling life.

As a boy, Joseph was considered a failure.  He never learnt to read and write, as he couldn’t concentrate or sit still long enough to finish a sentence.  When he wasn’t fidgeting or running around in a frenzy, he would often stop dead and stare into space not speaking for hours at a time, which earned him the cruel nickname of ‘the Gaper.’  His periods of apparent stupor were intermingled with violent rages and apparently unprovoked ‘fits of temper,’ which his mother couldn’t stop, no matter how much she shouted and beat him (hmm, wonder why that was….).

His mother tried to apprentice him to a shoemaker and sent him to two different Franciscan friaries, but he was sent back from all three in disgrace, labelled incompetent.  Eventually, she frogmarched him to a third friary and abandoned him there, washing her hands of him completely.  The Friars didn’t want him in their community, so they sent him to live in the stable with the mule.

And, lo and behold, the boy who had always failed to fit in with human society somehow fitted in with the mule.  As he spent more and more time with the animal, Joseph’s concentration improved, his fits of rage disappeared, and he even taught himself the basics of reading and writing, although with great difficulty.  At the age of 22, he seemed to be coping so much better that the Friars even sent him to the Bishop in the hope of getting him ordained as a Priest.

It was always going to be a long shot, as even in the 17th Century, clergy were expected to be able to read and expound quite a bit of the Bible, and Joseph was only really interested in one verse from S. Luke’s Gospel.  But as luck (or the Holy Spirit) would have it, that was the very verse the Bishop asked him about, and Joseph talked at him for hours, barely stopping for breath.  Infodump, anyone?

Joseph went on to become a priest, and lived out the rest of his life within that same community.  But although his ‘fits of temper’ (meltdowns?) stopped, they were replaced by ‘fits of ecstasy’ (shutdowns?). Almost nothing could bring him out of these ‘trances,’ and eventually he was forbidden to walk in procession, sing in choir or go to Mass with the rest of the community, and became a virtual prisoner in his own cell and private chapel.  I wonder whether he would have preferred to be back in the stable with his beloved mule.

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imageSaint Guinefort

OK, so Saint Guinefort was a dog.  A greyhound, to be precise.  And no, he isn’t really an official Saint, and in fact probably never existed at all, and almost certainly wasn’t Autistic.  But if I had to choose an overall winner, Guinefort would be my front runner for Patron Saint of Autism.  And here’s why.

Guinefort’s life story is almost certainly entirely fictitious.  In fact, it’s a folk tale which appears across many European cultures, and maybe further afield too.  Family has baby and dog; family leaves baby in care of dog; snake or other wild beast tries to attack baby.  Dog kills snake; father returns, sees blood and signs of struggle, presumes dog has killed baby.  Father kills dog, then finds baby safe and sound.  Father is wracked with remorse, dog becomes posthumous hero.  It’s all very sad.

But what’s different about Guinefort is that at some point, the inhabitants of a French village decided that he was a Saint and had a special patronage of babies.  This was handy, because several families had been burdened with changelings – when fairies make off with your good, lovely and healthy baby and leave a difficult, fussy or sickly child in its stead.  Of course, the changeling myth was really a nifty psychological way for women to admit that motherhood isn’t all flowers and rainbows, because it’s ok to find it difficult to parent your child if your child isn’t really yours. Some historians think that the myth of the ‘stolen child’ developed particularly to explain autism, and some people might say that the myth is sadly still alive and well today.

The French villagers developed a natty way of dealing with changelings, though.  They would take the infant deep into the woods and leave it for three days under the protection of Saint Guinefort, hoping that his prayers would convince the fairies to take back the unwanted child and give back the original.  After three days, the mother would go back into the wood, and presuming the child hadn’t died of starvation or been eaten by wolves, she would welcome it back into the family with open arms, and no doubt with genuine love rekindled.

This practice might seem barbaric and abusive – and so it was – but here’s the thing. If this really was a way of dealing with autistic children, then those children went into the woods autistic and they came back into their families autistic.  There was no question any more that this child was anything other than the family’s natural, rightful human child.  Whatever child Saint Guinefort gave you back, that was the child you were meant to have, and you would never abandon it again.  Basically, Guinefort presided over a three-day crash course in autism acceptance.

And that’s why Guinefort gets my vote for Patron Saint of Autism.  Because, after all, doesn’t everyone deserve a holy canine protector in their lives?

Happy ASD, everyone!

Things That Go Flap In The Night

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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.

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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.

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.

I’m Surrounded by Idioms

imageYesterday, I had to attend the most boring training day ever a fascinating training day which was a worthy use of the time and talents of all 100+ participants. As I had an appointment in the next town shortly after the day was due to finish, I knew I would need to leave a little bit early.  Unfortunately, because I got so bored I left two hours before i needed to innocently miscalculated my timings, I ended up with a fair bit of time to kill.  So I did something I rarely get the chance to do, and spent a quiet hour in a coffee shop.

The magazine rack in the coffee shop offered me only two publications to help me pass the time: a magazine about sailing, and the Daily Express.  As sailing’s not really my thing, I opted for the newspaper, reasoning that even though it was unlikely to contain any actual news, there might be a Sudoku in there.  And so it was that I found myself leafing through right wing rants, scare stories about health and disability, articles about celebrities I’d never heard of, a Sudoku puzzle (sadly, already completed by someone else) and the horoscopes.

I don’t normally read horoscopes as a general rule, because I think they’re bunkum; but this one caught my eye:

“Chances are you’ve spotted a fly in the ointment… But don’t jump to conclusions this morning. Call me to hear when there’s light at the end of the tunnel.”

That’s a lot of metaphors in one short horoscope (not to mention some very vague advice, and a cheeky plug of the vastly overpriced phone line).

One of the things that’s often said about autistic people is that our literally-minded brains fail to grasp the meanings behind the colourful sayings which so enrich our spoken language – things like “don’t bite my head off” or “grasp the nettle.”  But I’m not sure that’s the whole story, for two reasons:

1. A lot of autistic people are excellent wordsmiths and poets (just have a read of some of the blogs on the web), and so have shown themselves to be perfectly adept at using and understanding metaphor and imagery.  Unless someone can put me right, I’ve never met anyone (autistic or not) who actually expected showers of domesticated quadrupeds to fall from the sky.

2. The origins of so many of our idioms are now so archaic, and in some cases completely lost, that I’m not sure anyone could intuitively grasp their meaning without having them explained. For example, nowadays pots are for plants and kettles are made of plastic; unless you generally do all your cooking on an open fire, what sense does it make for one to call the other black? In my experience, most children (regardless of neurology) find idioms baffling, amusing and interesting, which really suggests that no-one just ‘gets’ them on a first hearing.

I wonder if part of the reason that autistic people appear not to understand idioms is because idioms are so deliciously ripe for echolalia.  They usually ‘bounce’ nicely, which makes them fun to say (“a stitch in time saves nine”), and they often conjure up vivid mental pictures or concepts (who wouldn’t want to imagine it raining kittens and puppies?), which makes them stick in the mind.  (As a child, I always thought that the phrase “a hair’s breadth” was “a hare’s breath,” and even today, whenever anyone uses the saying, I immediately think of the soft, warm exhalation of an oversized bunny.)  Anyway… it shouldn’t be too surprising if these are exactly the kind of phrases which get lodged in your brain and then used in contexts which might seem inappropriate or wrong.

In addition, there is that autistic need to know, the passionate desire to collect and understand information which means that while other people might just let an unusual phrase slide, autistic people want to understand the origins, the meaning, the whole nine yards.  (Nine yards of what, exactly?)  So, while some people might just be happy with the explanation that ‘a fly in the ointment’ means a problem, I want to know what fly, what ointment, how did it get there, and a hundred other questions that probably make me look like an idiot.

I’m not suggesting that there aren’t ever times that literal-mindedness gets in the way of understanding idioms – I once got into terrible confusion about the Mediaeval German writer Thomas a Kempis, simply because I had heard someone describe him as “a Young Turk.”  And maybe I do miss clues in context or inflection which tell everybody else, “alert: not to be taken literally,” but that’s another story entirely.  The fact is, idioms by their very nature are culturally specific, and they all need translation and interpretation.  Nobody just gets them intuitively.

Years ago, I was walking through a tube station when I came across a small girl struggling to carry a bag down the stairs.  Her mother was way ahead of her, and hadn’t noticed that she was struggling.  I wanted to help, so I went up to the girl and said, “Do you want a hand?”  She looked up, nodded, and then put her hand in mine.

Sometimes literal-mindedness is a beautiful thing.

Wholalia

STOP PRESS! This is The Most Awesome Thing Ever.

I found it on FeministAspie’s blog.  So far as I can tell, she hails from the UK; is a woman, a Feminist and autistic; loves Doctor Who; and probably goes to the same University that I did.  And she posted this video.  All of this makes me happier than really befits a woman of my age and station.

TheDaleksTheDaleksTheDaleksTheDaleksTheDaleksTheDaleksTheDaleksTheDaleksTheDaleksTheDaleksTheDaleks

*flap flap*