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On Autism and the sensation of Time.


November 1 keeps catching me by surprise. Every year. Every Autistics Speaking day.

Sometimes I wonder what it would be like to have an accurate sense of time: to remember an event and Just Know how long ago it was, to see an event in the calendar and Just Know how long I have to wait. But I don't. I have five times into which all events are sorted: there is the Now. There is the Recent Past and the Near Future... maybe up to 24 hours in either direction. And then there's the Past, and the Future. And within those two groups, there is no ordering. If something happened a week ago, or twenty years ago, it feels the same to me. If something is scheduled for Thursday, or for April, the urgency is the same to me.

As you can imagine, this doesn't help with things. If something was more than a couple of days ago, I don't remember if I've done it or not. The death of my father's father in 1993 feels as immediate and painful as the death of my mother's father in 2009. For any event which has happened, I must consciously remember context to put things in order: This person was at that event, so it must have been while I was working there. That narrows it down to five years or so... now I have to look up which years those were...

Because all events in the future are the same, it makes planning a bastard. All tasks are due In The Future, so the one which is due in two days feels like the one due in a month. So when I look at a list of things which need doing, I don't see a list, I see a heap: I cannot pick which one needs to be done first, because they all feel like they need to be done first. And when I need to do something, either I do it Now, or I look up and see that I have been saying "I'll do it tomorrow" for a week, and the week before that, and the week before that, and... it's been months. Bugger: I'd better do it tomorrow, then.

Would you believe this affected language learning? D'accord, mes enfants: Quelle heure est-il? And the teacher would wave a clock at us with the hands set just so. I still, at almost 43 years old, have to stop and consciously figure out a dial clock from first principles, every time. So then, I would still be trying to figure out which one was the hour hand when even the slowest other student had thrust their hands up: C'est huit heures quinze, madame! (That I couldn't process anyone's speech as quickly as anyone else didn't help either.) So, for years, I thought I was bad at languages.

I saw an episode of Bones once, where a character described himself as "dyslexic for time", which description struck through me.

Depression is not helped by this. Because all I can put into somatic context is the immediate Now, then I cannot remember not being anxious or depressed. I know it must have been different at some point, but I am currently full of fear and anxiety, and it may as well always have been thus, and might as well always be.


If it weren't for the last minute, nothing would get done. I just wish that every minute weren't the last minute.
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What is the difference between a cage and a sanctuary?
Autistics Speaking 2015 Participant

There have been a couple of cases recently of schools deciding that the best way to cope with an autist is to restrain them.

One was a primary school. They built a cage. A literal steel cage. In a storage room, where the only two lighting levels were blinding or black, because it was floodlit with the sort of fluorescent searchlight glare that OH&S people tell us is compulsory, and no windows. In a touch of probably unknowing irony, it was painted blue.

This cage was explicitly for the benefit of an autistic student, so that they could lock him in there when he had a tantrum. "For his own safety, and the safety of others", of course.

Of course.

Of course it is obvious that they didn't ask an autist, because then they might have learned that a meltdown is not the same thing as a tantrum, that a meltdown is caused by something, and that what an autist needs to come down from a meltdown is quiet, calm, dark solitude. Well, solitude that child would have, if not privacy. Dark that child would have, if they remembered to turn off the lights, and if "pitch blackness" counts. Quiet would be achieved, because any screams would be muffled.

If they had been looking for a better way to make a bad experience immeasurably worse, it's difficult to see how.


Then, more recently, there was a "box" at a ... well, let's not call it a "school". I doubt anything was taught there. More of a daycare center for autistic adults. (Not that such things aren't themselves needed.) And there, also, was a box.

In this case it was slapped together with 2x4s and plywood, instead of case welded powder-coated steel. And the outside was decorated by the autists themselves. And they had been asked to bring in egg-cartons from home to line the inside.

Now, this one is harder. Because it might be something to lock an unruly autist into, ... but. It might have been a place for an autist to retreat into. Because: quiet, dark, private, enclosed.

Everyone was outraged. There were fulminations on the front pages, and abject apologies from the organisation, and calls for investigation. No-one seemed to consider that it might have been something for the autists' benefit.

I started asking around, and actually got some answers. (From ASAN AuNZ, who did not have to answer the questions of some random from off the street, but they did, to their credit.) And they sent me more photos than had been published.

The box was unlined. That could just mean it was unfinished. But it was clearly crude and unrefined. Of course, that meant also that it was relatively flimsy, and could not contain anyone who really wanted out. But more damning, it was against the windows, and open to the windows. There was little darkness in there, and thanks to the open gaps, little to no muffling. (But then, again, if the autist inside could hear everything outside, so could everyone outside hear the autist were they so minded.) And there were close-ups of a thing on the outside of the door which I was assured was a place for a lock. I couldn't see how it was possible to put a lock on it, but I was assured that that's what it was.

I remain dubious about the intentions of the staff who built that box. I still think it not impossible that they were really, if ham-fistedly, trying to build a retreat box, where an autist could have a semblance of privacy and quiet in which to calm down. Or, everyone else is right, and it was a ham-fisted attempt to build a box in which to punish or restrain an autist who was playing up.

I do believe the press release of the organisation involved, when they said that whatever its purpose, it wasn't fit for it. They dismantled it and threw it away when they found out about it, and everyone who was involved will probably be punished... or at least given a stern talking-to.

But... We autists do need a place to retreat. When at work, we are increasingly being sat, along with everyone else, in overbright, noisy, confusing, full of distraction and detail and movement, every movement public to everyone, open plan office spaces. Every moment in glare, with someone literally watching over your shoulder, with the conversation of a hundred people unmuffled in your ear, with people moving in your line of sight all the time in the corner of your eye. And there is no respite. They may have "cool down" spaces where you can take your laptop (good luck if you are assigned a desktop), but they're designed for NTs, and are still bright and public and loud and distracting. They may have meeting rooms you can book for private work (pity about the whole laptop thing), but good luck booking them over the Project managers' interminable meetings about minutiae and trivia. There is no escape from when you arrive, to when you go home. No escape from the light or the noise or the incessant burble or the movement or the feeling of a predator behind you or the people people people always expecting you to deal with them socially on their terms and immediately.

So the lack of a place to retreat is also a problem. And autists aren't included in the design stage, or the OH&S stage, or, really, the consultation stage. My requirements aren't arbitrary, they are medically necessary. But when I raise them, I am dismissed with platitudes and boilerplate and repeated assertions that this space is designed to be best practice and ergonomic and all sorts of other lies and bullshit.

These spaces are, I'm going to be charitable here and say "unwittingly", designed to exclude autists and make us feel unwelcome and uncomfortable. It's the equivalent of setting up a Mosquito, playing high pitched sounds that adults can't hear, but teenagers can feel on the edge of sensation like the echo of teeth being pulled.

And I work in IT. You'd think IT would take better care of its autists. (Who am I kidding, no organisation gives a toss about its IT department until they can't read their email any more.)

So there is a need for retreats, for sanctuaries, for a place to go to keep the world out, to take a breath before you plunge back into the dazzling glare of a world built for other people but not you.

It's important, though, too, that this place be appropriate, be fit for purpose, and, above all, be voluntary.

What is the difference between a cage and a sanctuary?

It's on which side of the door is the lock.





(We're scheduled to move into the new building by the end of the year.)
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Overload is a feature of autism, to the point were I would talk about how my autism interacts with my circumstance, but there is so much going on that I find myself unable to extract any particular thing to discuss: the forest is so big, I can't describe any trees.

So instead of talking about that, let me talk about television.

There are autists on TV, even if their attributes are usually inconsistent and subject to plausible deniability by the show's writers. That is: it doesn't matter how obvious that the traits are, the writers will deny that the character is anything of the sort. Presumably so that they can explain away any mistakes they make.

Still, there is Sheldon Cooper, and Temperance Brennan, and Data, and (I'm told) Abed Nadir.

Characters in historical features, however, are more difficult to nail down. Not least because the assumption seems to be that, in accordance with Age of Autism dogma, there weren't any autists before the 20th century.

Which is, of course, ridiculous.

Historical autists who could feign normality, or were in circumstances where they could function, were just folks who were odd. Autists who could not function were "idiots", and typically ignored in the records. If they lived that long.

There's a good argument that Fitzwilliam Darcy was on the spectrum, given how he was described as acting stiffly and formally, and abnormally so even by the standards of the time, but hiding behind his demeanour a rare kindness and sensitivity.

Sherlock Holmes, for different reasons, as well.

But as far as it goes, that would seem to be that, unless you include the archetypal absent-minded professor. And even that is typically a trope in its own right, and with only tangential connection to autistic traits as is typically presented.

And then there is Miss Fisher's Murder Mysteries, series 2, episode 8: "The Blood of Juana the Mad".

Spoilers and potential triggers ahead

Beatrice Mason is a student of medicine in the 1920s. When we first see her, she is not the only female in the class — indeed, the teacher of the dissection class is a woman — but the three women present are outnumbered by the men. When the sheet is pulled from the cadaver, supposed to be a woman in her thirties, and it is revealed to be an older man with a slit throat, Beatrice is the one who names him as Professor Katz. Her expression is one of surprise, rather than shock or despair.

Later we see the investigation enter Professor Katz' office, and it turns out that Beatrice was his research assistant. She gets distressed that strange people are invading the office. She gets even more distressed when a valuable mediaeval manuscript is missing from the safe.

Her reaction is to rush out to the empty corridor, and rest her forehead against a pillar. When Phryne (the heroine of the series) goes out, Beatrice says that she finds groups of people difficult to be around.

Later, when Beatrice is questioned, she reveals that she effectively lives in her office after she was kicked out of her rooming house after she was blamed for a fire. As a woman, she wasn't allowed to live in any of the residential colleges. She is very matter of fact about this.

Later we learn other things about Beatrice. She may not show it, but she says that she is sad that Professor Katz is gone. She only eats jam sandwiches. She hates it when people touch her books without gloves. When she says in response to an offer of a place to stay, that she "will consider it", she means exactly that, it's not a euphemism for "no". She looks distracted, but while looking around she picks up important details as quickly as does Phryne herself.

And she provides the vital clues to solving the mystery when not only has she transcribed the missing manuscript, not only had she found the hidden code, but when her transcription was stolen, it turns out that she had made separate transcriptions of the code alone.

Her difficulties are not played down: she is drugged because someone gives her a jar of spiked jam. She is lured to a boy's room by simply being invited. "It was polite to go. It's important to be polite." She is constantly being insulted, teased and excluded, and appears unaware, although she does describe knowing full well what's going on. Mostly.

Never once is the word "autism" uttered. It would be an anachronism if it were: Kanner's paper was still twenty years in the future. And yet, for those who know what they're looking at, there can be no question that that's what she is. It's not a tragedy, it's not played for laughs, it's not a source of superhuman powers, and it's not a quirk without consequence.

It's possible for the depiction of autism on television to be done right.
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I don't really think of myself as "disabled".

Even when I got the diagnosis of Asperger's. I mean, Asperger's is an Autism Spectrum Disorder, and Autism is classified as a disability, but this is how I've always been, so I don't feel any more "disabled" after the diagnosis than I did before.

Sure, there are things I can't do as well as most people, but usually I can work around them. "Please email that info to me, because I have already forgotten it." "Please, only one person talk at a time, otherwise I can't hear anyone." "Say again?" "I don't understand."

But then sometimes the walls fall down.

Last week was very difficult, but it could have been much worse.

The Tuesday before last, and the Friday before that, I had the visual halo of a migraine after going to the gym. This was disturbing – to say the least – so my wife, Mim, made an appointment for me at the doctor's.

And on the Wednesday evening – the evening before the appointment – my car's engine changed from running rough to tapping as I drove home from filling the tank. When I checked, the oil was basically dry.

So on Thursday morning Mim drove me to the doctor's appointment, where he told me I was probably dehydrated, and that I needed blood tests for everything. I was at high risk for Diabetes, high cholesterol, Lymph dysfunction, all sorts of things.

After the appointment, we went shopping and got a bottle of oil, and I filled the engine when we got home. I drove around the block, but the tapping didn't go away, so Mim called a mechanic, and we drove over for him to look at the car. It turned out that the tapping was fixable, the car needed a service (which I knew), and I had severely over-filled the engine, and was at risk of blowing the gaskets. We booked it in for a service the following Monday. Which meant that I would have to figure out the new train ticketing system to get to and from work.

On Saturday, Mim took me to get phlebotomised, which was relatively painless, even if it did delay my morning coffee by a couple of hours.

On Monday, she followed me to the mechanic's, and took me in to work. She gave her phone number, so that the mechanic would talk to her about the works required, and her mother drove the car home for us. Then Mim came and collected me from work. She also booked the followup doctor's appointment when I got notification that my results were in.

I'm not diabetic, by the way. (big sigh of relief.)

But that long tale, even with the happy endings (car is fixed, bloodwork looks normal, further gym sessions have been migraine-free), brought something else to light.

I could not have done any of it on my own.

Mim had long since found a medical clinic for us to go to, and had the number to hand. Mim knew the mechanic, and had his number to hand. Mim had organised half a dozen people in an intricate dance of planning over a week, over and above the usual juggling involved with being a mother of two. Mim neither froze nor panicked when plans changed and unexpected emergencies popped up. Mim could make phone calls without having to force herself to.

If it were not for Mim, I would have had to pick a doctor randomly out of the phone book, not having any idea where to go. At this point I would have been paralysed by the choice between dozens of unknowns, and very likely given it up as Too Hard.

I would have had to pick a garage out of the phone book, again, randomly. Again, paralysed by a choice between unknowns, again likely to have given it up, or at least put it off and put it off and put it off...

I would have been unable to ask for help, leading me to be stressed out by learning how to buy a train ticket in the new system. (Although that there is now a need to learn how to buy a train ticket is another rant, for another time.)

Even if I had been able to chose a doctor or mechanic, I would have been paralysed at the act of picking up the telephone and talking to them: an absolutely excruciating experience at the best of times, and the best of times is not when I'm worried about my health and my car and everything is failing at once and I need to cold call strangers and make snap decisions and complicated (for me) planning on the run.

With Mim looking out for me, everything turned out OK, and relatively without fuss, and quickly.

Without Mim, I would still be stressing about finding a doctor, and prevaricating about actually organising to go, and putting off dealing with the car, and catching public transport in the heat and the rain, and avoiding the gym because I didn't know what was causing the migraines, and generally freaking out. Every point would have been a mountain to overcome, where most people see gentle hills at worst. And that's if Mim were to have only been on holiday last week. Without her at all in my life then I wouldn't be living where I do, likely wouldn't have the friends or social interaction that I do, wouldn't eat as well as I do.

Whenever I've made a step towards independence in the past, it was only possible because friends and family have helped me. A school friend helped me move out of my father's house, and in with him. And then helped me arrange a flat of my own. Where I lived off takeaway, and never used the kitchen, and washed my clothes far less often than I should have, and was in the early stages of scurvy before other friends noticed and gave me a prod. And those friends helped me move in to their share house, and through them I met Mim.

I owe my independence to the help of others. I don't think I would have been capable of any of it without their help.

And it was luck that led me to them: it was because my father saw an ad for the entrance exam for a selective entry state school, and he took me to take that test, and I passed, and I chose Japanese instead of French or German, and I repeated year ten, and I joined the Stage Crew. If any of those things had not happened then I wouldn't have met any of these people, and I would not be where I am now.

I simply could not have done it without their help.

And so, by this luck, this series of strokes of luck, I am privileged. I am privileged in that while I have Asperger's, I don't have to think of myself as disabled.

Because other people have helped me in those things which I cannot handle on my own, simple and normal things which most people take for granted, like arranging a place to live, and eating, and seeing a doctor, and getting the car serviced, and dealing with minor crises, and so I am saved from most of those things which could so easily go so very wrong.

I love Mim. She is my wife, and my friend, and the mother of my children, and besides all that, the person who enables me to function as if I were normal. I cannot express how grateful I am to be so lucky.
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Autistics Speaking Day 2011


Doubt

There are four learned men on a train travelling through Scotland. As they are looking out the window, they see a sheep.

"Ah," says the first man. "Sheep are white in Scotland."

"Some sheep are white in Scotland," corrects the second.

"At least one sheep in Scotland is white," adds the third.

"There exists in Scotland a sheep which is white on this side," says the fourth man, and returns to his book.

Autists tend, as a rule, to be like that fourth man. So when we are trying to distil what the "Austistic Experience" is like, we tend to qualify strongly: I don't know what the "Autistic Experience" is, because I don't know all Autists. Not even 'most' Autists by orders of magnitude. I know a couple of others, I suppose, but I wouldn't call that "many". And anyway, I don't know what their internal experience is. I am able to speak for exactly one Autist -- myself ... some of the time.

And Autists tend to take people at face value. It takes us effort to consider that someone might be lying, or that they might have an agenda which is distorting their evidence, or that they might, despite their air of assured confidence in their own correctness, simply be utterly wrong.

We doubt. But because of a lifetime of being the odd one out, of being the one quiet dissenter in what appears to be a sea of unanimity, we most of all doubt ourselves. There's always that niggling voice in the back of your head whispering "... or maybe it's just you."

Or maybe that's just me.

Combine that with Alexithymia: the inability to articulate -- even to yourself -- your own internal emotional state, and we find ourselves blown about in the breeze. Maybe that article which says that Autists are like psychopaths is true. Maybe all Autists are characterised by uncontrollable rages and incessant stimming. Maybe Autists really don't care about other people.

And yet... I have learned to control my rages, most of the time. I only stim when I'm stressed... so as I notice, anyway. I certainly think I care about others.

Maybe I don't cope as well as I think I do. Maybe I just think I care about others, but I don't really. I have logical reasons for why I want to be around my wife and my children, but I also have times where I want even them to just go away and leave me alone for a while. I don't know what "Love" is supposed to feel like; how do I know that I'm not just pretending to "love" them... even to myself?

Or else... maybe this is evidence that I'm not *really* Autistic. Maybe I'm just lazy and undisciplined and stupid, like I spent most of my life thinking I was. Maybe those people on the internet are right, and I am just inventing a condition to explain away my failings. Maybe I'm running away from my own broken self, instead of facing it and fixing it. Maybe if my experience of "love" is so different from how it's described, then I don't really-- No. I can't even finish that thought, not even hypothetically.

Is that evidence for or against the proposition? Which proposition?

It's really, really hard to put your own experience to the front, and have the strength of will to assert, even to yourself; "Maybe everyone else is wrong." Especially so when your entire life has been the experience of being the one who is the odd one out, whichever group you are in.


Assumption

“Before a man speaks it is always safe to assume that he is a fool. After he speaks, it is seldom necessary to assume it.”
--- H. L. Mencken

We fight, our whole lives, against assumptions. We all do: men, women, Autistic, Neurotypical, gay, straight, black, white, everyone. We are formed by what we are thought to be, by others, and by ourselves. We are expected to be smart or dumb, base or refined, educated or ignorant, cold or emotional. Other people treat us differently based on these assumptions, and we expect more or less of ourselves based on how we match up to our own expectations of ourselves -- our assumptions of what we should be.

We, all of us, are moulded by society, by those who surround us. For high functioning Autists, this is no less true.

Before diagnosis, this force to conform can cause intolerable stress. There are things which we are expected to do which Autists simply cannot do, or can only do with difficulty. Things which are taken for granted so much as to be invisible until the convention is broken.

People are supposed to like socialising. People are supposed to be able to look one another in the eye, unless they have something to hide. People are supposed to be able to chat in noisy places. People are supposed to react appropriately in a social context. People aren't supposed to freak out in crowds. People aren't supposed to find common and unremarkable sensations to be intolerable. There are all sorts of things you don't realise you assume until that assumption is violated.

And there are assumptions made about those broken assumptions. If you can't hold someone's gaze, you are assumed to be shifty. If you overcompensate and stare, you're assumed to be creepy. If you can't remember what you were supposed to be doing, you're scatterbrained, or undisciplined, or lazy. If you react too oddly, then you're rude.

Awareness

“We live on a placid island of ignorance in the midst of black seas of infinity, and it was not meant that we should voyage far.”
--- H.P. Lovecraft

After diagnosis, the stresses are different. First, there is the stress of re-evaluating one's entire life in the light of this new information. It's not a trivial thing to retrofit such a fundamental and powerful addition to one's very self-identity.

But then you start to pay more attention to what people say about Autists and Aspies. You can't help it: you hear the word "autist" and your ears prick up, you join an internet group to see what people are saying. You discover yourself as a citizen of a new world. And with that, you discover that not all the things said about you are nice.

You discover that people are antagonistic to Aspies, because they knew someone who everyone knew was an Aspie, and he was a rude entitled prick. (Well, I'm sorry about that, but I don't think that person is representative... or is he? How would I know?) They are antagonistic to the very idea of Asperger's Syndrome, because it's an excuse to be a rude entitled prick, and it's not even a real condition, it's just bad behaviour, and those spoiled brats wouldn't even be that bad if their mothers and doctors stopped coddling their
tantrums and gave them more beatin-- discipline. People who get upset with you when you point out that the link between Autism and Vaccines has been proven to be not just wrong but actively fraudulent, as if it's your fault that they have left their children vulnerable to Rubella. You discover that Autists aren't really people, they're more like soulless shells in human form. You discover that you aren't your parents' child, but an empty changeling left behind after the Autism fairy visited and cursed your family. You discover that Autists don't feel emotions: we're like psychopaths, but we're the 'good' kind.

And, every time, there's the Doubt. But -- I'm not that annoying ... am I? I'm not throwing tantrums because I'm an immature entitled man-child ... am I? I feel emotions so strongly that they can tear apart my soul from the inside ... or do I?

Or is it that those emotions are the proof that I'm not really Autistic, that when I present myself as such, that I'm lying. I don't really belong in this community. I don't really deserve to ask for help from that association. I don't really merit accommodations, it's not really an explanation.

Maybe I'm just the horrible failure of a human being I always thought I was.

Maybe it's just me.


Hope

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
--- Albert Einstein

But then... in these communities, even as I struggle against my own instinct to flee them in shame, as a stranger and an alien and an imposter, I find something vanishing rare and precious: people who are saying the thoughts in my mind.

Even in such benighted places as television, there are characters who I actually understand, and who have their own dignity in their difference.

Mr Spock, Worf, Sheldon Cooper, Temperance Brennan. They all find themselves surrounded by aliens who are doing bizarre things for incomprehensible reasons. Where the incomprehension goes both ways, where the people around them don't understand why their passions are so important to them, why they react as they do -- as they must. And these characters must at least pretend to conform. And it is shown -- in Star Trek, and Big Bang Theory, and Bones -- that they are willing to make the effort, but it is an effort, and it's hard, and exhausting, and sometimes you just need to meditate, or fight holographic enemies, or lose yourself in physics, or run away to Paraguay.

We learn, all of us, every day. Not everything comes naturally, though. Muscles grow tired, and not all start as strong as others. Most of us can pass as normal for a while. But it's bearing a heavy load, and all of us need to put it down and be ourselves at times.

Some of us are lucky enough to have found a place, and found people, where we can do that and still be accepted. Where we can put down the mask for a while and stop doing the over-the-top monkey gesticulations which people seem to expect as feedback: grimaces and rubbery faces, where a simple raised eyebrow and long-held look feels more natural. Where it is understood that we get overwhelmed, and not pushed past our limits. That we do get upset at stuff which seems trivial to other people. We know it's trivial, we don't want to get upset -- not least because we know it upsets those around us -- but we do. Giving us warning of change takes some of the sting, else allowing us to hide away and get good and angry until it's out of our system, or else hide away and cry for no reason we can articulate. Where people remember that we hate the telephone with an abiding passion, and don't make us make calls unless we have to. Where we don't have to talk (I'm highly verbal, but sometimes it takes more effort than it seems worth to force the words out, when I don't have the energy to be other than silent).

I've been blessed in finding such a place, and such people.

I hope that in this, at least, it's not just me.



(My effort from last year.)

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