So I was sick at home yesterday, and after the girls got home from school I decided that it was quiet. Too quiet. And having picked up Peter Gabriel's Car
album recently, I decided to play that at them.
And during track one I said to the girls, "It's not every day you hear a prog rock song about St Vitas' Dance."
"Oh!" exclaims the eldest, "The German Dancing Plague! Did they ever figure out what caused that?"
(Self-)Advocacy is hard, because it doesn't feel
, most of the time, like a disability.
That needs unpacking.
The advocacy work I'm trying to do has a lot of overlap with advocacy for wider disability inclusion and accessibility. If I'm successful, it's not just for the neurodiverse, it's for the vision impaired, the mobility impaired, the hearing impaired, everyone. It requires making common cause with them, and at least at the start, advocating on their collective behalf (because somebody has to, and if anyone else is, no-one seems to know about it). But I don't feel like I belong in the same category as they do.
Because what is
"disability"? It seems that every attempt at defining it comes out different, and the only commonality is that it's like "obscenity": you know it when you see it.
At the core, it's a condition which results in a more or less permanent impairment in function. But that carries its own definitional problems. A family with achondroplasic dwarfism, in their own specially designed environment, might not notice any particular issue. Until they step outside into a world designed for "normal" people. Or, as the terminology is preferred, "typical" people, because we're talking about mathematical norms over populations. So the first battle is to define your population. If you had a modern environment designed for Maasai, and a !Kung family moved in, would they count as disabled because of their physical difficulties? Or vice versa?
Let's take it further: Dwarfism isn't just caused by achondroplasia, and there are so many possible causes, including just because, that the definition for dwarfism as regards being a disability is being 4'10" or less as a fully grown adult. But it's possible for treatments of conditions like achondroplasia mean that growth can be given a kick along. It's entirely possible to be a 5'5" dwarf. Are they still disabled?
Then there's where the line is drawn regarding severity: someone with a C5 spinal cord break is quadriplegic, and everyone would agree that they're disabled. Someone with an L4 break is paraplegic and also definitely disabled. Someone with a below the knee amputation is definitely disabled, even if, like Adam Hills, you wouldn't usually even know unless they told you. I just discovered that I have a slight congenital deformity of the talus bone in my ankle, which results in a twist in the foot, which results in chronic tendonitis and achilles tendon pain, and I've just got orthotics to address. Does that
count as a disability?
Then there's where the line is drawn regarding permanence. The flu is clearly not a disability, no matter how much medical care you might need to live until it passes. The paralysis which results from polio clearly is a disability, as is the results of post-polio syndrome decades after any recovery. A broken leg is an injury, not a disability. The results of many broken bones can add up to a disability, such as for someone with osteogenesis imperfecta.
Where am I going with this? Executive summary: the concept of "disability" isn't that easy to define.
And I don't feel
How I am is how I've always been. In the normal course of events I am just how I am.
And then a tradesman comes out for an emergency visit, and it turns out I have absolutely no idea how to even ask how to pay him, or how much. Or when the conversations around my corner of the open plan office all talking over the top of each other penetrates even the music playing through noise cancelling headphones and I have to grit my teeth and fight the urge to stand up and scream at them to shut up.
But still, I have been diagnosed as on the Autism Spectrum. And the fact of that diagnosis means that, by definition, my symptoms add up to clinically significant impairments. I am, by definition
, disabled. But putting myself into the same company as someone who uses a wheelchair or is blind, feels like a form of fraud.
And that's the same wedge that some Autism parents use to divide "high functioning" and "low functioning" autists. "You're not disabled
, not like my child. You'll never understand what it's like for my child. Don't you dare to try to speak for my child."
Never mind that if you child can't tell you what it's like from their point of view, maybe people like me can. Never mind that there is no dividing line between "high" and "low" functioning, and that it's a grossly oversimplistic binary division of a complex and continually varying context dependent spread of capabilities and deficits. How about you let me advocate for me
, and for people like me. How about you stop cutting my legs out from under me by shouting out my own private doubts, as if I hadn't been obsessing over them to an extent which practically of itself proves them false, as if I hadn't thought of any of them, as if the answer was as simply and easily expressed as the question.
Advocacy is by its definition the act of asking for help. Help for yourself and for others. (And that latter part means that there's more than my own wellbeing at stake if I stop.) And part of the very definition of the condition I'm asking for help with is that I don't know how to ask for help. Certainly not from the people I need to convince to provide it.
Christ, I can't even get some of them to answer my emails.
But I'm sure as hell not going to stop. Because, as I keep reminding myself, I'm doing this because I can
, so that the next poor bastard doesn't have to.
It's just that I don't feel like I belong in the group for whom I'm doing it.
This movie is some sort of superfractal: every part of it is not just as
dumb, it's dumber
than all of the other parts, independent of scale.
Except for Alan Rickman.
So, I'm giving a talk at the Professional Staff Conference
. Again. Which is next Thursday.
My subject is Autism 201
, following on from the Autism 101
talk last year. (Linked video is to the repeat performance of that talk I gave a couple of months later.) I may need to explain the "201" joke, there.
I will be talking about second-order effects of Autism. Last year was a list of signs and symptoms, and touching on their effects. This time will be the stuff which flows from that. So, less of the "sensory sensitivity", more of the "Depression and Anxiety and Discrimination, Oh my!"
At the end I have a slide with contact details for LifeLine and Beyond Blue, and I intend to give a Trigger Warning at the beginning, 'cause I'm going to be talking about some dark stuff.
And it occurred to me that "Trigger Warning" has itself become a trigger to the Right, who use it as something for which and with which to insult "the Left", which only goes to prove that they really don't understand what one is or what it's for.
The Right (by which I don't mean "conservatives", or even "Tories", but the sort of creature who staffs the IPA and the CIS and the Ramsey Center and Sky News After Dark), tend to use it in the context of "Trigger warnings and Safe Spaces and Snowflakes". And they can fuck right off with their supercilious ignorant sneering.
A Trigger Warning is not
, despite their bleatings, "I'm going to say some things which are politically incorrect so everyone can just leave now". It's "I'm going to talk about some dark things, and there may be people present who don't want to have that sort of grenade dropped on them without warning, so this is your warning."
"Heteronormative discourses" does not get a trigger warning. "Suicide" does. There may be people who are traumatised by the existence of cis-het-folk, and if so, there's not much I can do to help them with that. On the other hand, there are people who have been raped, or attempted suicide, or both, and them getting involved in a discussion about that without warning is, too often, not healthy. It's literally the least you can do to let them know it's coming, and make their own decision as to whether their mental resources are up to it.
It's the difference between stepping onto the mat and bowing to your sparring partner, and getting king hit on the street.
And while we're on the subject, I look at people in the CIS and the Ramsey Centre and the Sydney Institute bitching and moaning about "Safe Spaces", and I laugh like a goddamn drain. I have to back away before I hear them talk about how Leftist Snowflakes can't take criticism and are rude to the Right, and that's why the Left should be forced to shut up and stop being mean, and I can't breathe.
So, anyway. I've been given 40 minutes and a big room to talk about Autism to a few hundred people. I have about 30 slides, and a quick runthrough and brief explanation of them took 10 minutes, so I should have some time to fill in with actual details, and maybe even have time for questions. Most other folks only have 20 minutes at most, so I've been given a high honour. They did say that my winning the People's Choice Presentation last year was a factor there.
No pressure, right?
 The Liberal Party, of course, being the political wing of the IPA.
 Or, as I like to call it, the "Ramsey Centre for Anglo-Christian Superiority and White Man's Burden Studies".
 AKA: "Gerard and Mrs Henderson's Living Room Lecture Series".
Younger daughter: "I swear on my father's grave—"
Me: "... Did she just say her 'father's grave'?"
Possibly I should put a chair up against the bedroom door tonight...
Watching the 2018 Robin Hood
movie with Taran Edgerton and Tim Minchin. And thinking of the 2010 Robin Hood
movie with Russell Crowe. And Robin Hood, Prince of Thieves
And you know what I would like? I would really like a Robin Hood set in the 12th Century.
Without the repeating crossbows. Without the WWII landing craft. Without the modern military tactics (Taran Edgerton's Jerusalem was very much like 2001 Kabul, and many others have the Merry Men using guerilla tactics taken straight from the Viet Cong.) Without mullets and modern clothes and (much though I otherwise appreciate them) cleavage you could drown in everywhere you look.
You know, something that at least pretends to pay lipservice to how the society and economy of England in 1200 actually worked. With garb that doesn't look like Coco Chanel and Jean-Paul Gaultier had hands in it. Without the 1930s design and molotov cocktails.
Is that too much to ask?
Dear IBM (I think),
No I do not want you to email me a PDF of a four-colour-glossy which contains no actual information for a product I've never heard of, will never use, and have no say as to whether we use it or not anyway.
Also, please tell your sweatshop call centers to buy pop-suppressors for their inmates, because I could barely make out one syllable in three through the crackle, not all of which was the bad phone line from the subcontinent. And that's before taking into account that my auditory comprehension is shithouse to begin with.
Also, you broke me out of flow, you sons of bitches, and that does not
make me well disposed to you, even if my good graces made any difference, and somehow the fact that they don't makes it worse. You killed an afternoon's hard-fought-for progress by your abortive attempt to sell me something I don't want.
Your sales force and sales practices were a joke in the seventies, and they haven't improved. Please go away.
No love whatsoever,
Born 16 November 1926
Died 12:12pm, Wednesday 22 May 2019
Daughter of Richard Claude Parr (1896–1964) and Ruby Clarice née Sutherland (1900–1972)
Wife of John Robert Staples (1923–1993)
Mother of Rodney and Linton
Grandmother of Katherine, Damien, Jeremy, Caitlin, and me.
Great-grandmother of Abigail, Susannah, Emily and Zoe.
Her friends and family always called her Alwyn, or Al.
She was... complicated.
So, three more years of lying, smug, arrogant, hypocritical thugs and bullies.
If there's one thing that comes out of this, it's that Queensland needs to be sawn off the continent, towed out to sea and sunk. Sure, the Great Barrier Reef would be a loss, but those idiots are going to kill it anyway, so...
Morrison (who tried to claim credit for the Same Sex Postal Vote
that he abstained from voting in) has been rewarded for lying
and lying about who is lying
. And on Insiders
this morning, Frydenberg is still
Dutton got back in. Christensen got back in with an increased margin. Abbott got the arse, at least. One bright light in a morass of despair.
Well, two lights. As bad as these results are for civil society in Australia, at least we can be sure that Russians haven't directly edited the numbers (because everything is on paper), that we still have a functional Electoral Commission which hasn't been entirely suborned by the Regressive party, like the US has (*cough*gerrymandering*cough*).
But that's cold comfort when we see people returned to their seats in the House when they should have a seat reserved at the Hague. Dutton is still minister for the
Homeland. That's the thing that hurts the most.
Amanda Vanstone¹ and Brendan O'Neill² talk about Greta Thunberg
Oh dear sweet baby Jesus on a topheavy quadbike in a thunderstorm, I don't think I've heard such a load of tendentious, arrogant circle-jerking and question-beggary in my life.
"And we're querying the degree to which Greta Thunberg is being used by other people. It's a serious question."
No it's not, you supercilious twerp. It's not a question at all. It's been a taken as an axiom that she is from the very concept of the conversation, and everything you two have been furiously agreeing with each other about³ is based around that assumption. "Given that Greta Thunberg is being used by other people, and given that it's a bad thing to use Greta Thunberg, is it a bad thing that Greta Thunberg is being used by other people? Discuss."
Then there's a load of "isn't it unfair when the other side keeps using the 'won't someone please think of the children' argument and I look like a monster when I use my usual rhetorical technique of withering, bullying sophistry on them, and that's taking advantage of children, won't anyone please think of the children." Because it can't possibly be that people have opinions and the right to express them before the age of eighteen, it must be because the Evil Social Marxist Conspiracy in teh ABC is putting them up to it in order to make you look bad.
Oh, and pleading for "won't someone please think of the welfare of Greta, who is delicate and fragile and autistic and has mental health issues and let's just go ahead and imply that young people aren't able to have agency, autistic people aren't able to have agency, therefore Greta must be someone's hand puppet, why are you being so mean to Greta."
Brendan O'Neill said that. Brendan. O'Neill. Said that.
The Brendan O'Neill who called her a "millenarian weirdo". The Brendan O'Neill who complains about her "monotone voice"⁵ and "dead eyes".
Oh, won't someone think of the children, indeed.
Is this egregious nonsense the best that the Right has to offer as intellectual justification for itself? This ad hominem, petitio principii, ignoratio elenchi,
⁶ incompetent sophistry. Because as an English Essay in year 10, this would get a "1/10, see me" in red pen, and an urgent referral to the school counsellor.
And the next Right Wing intellectual gatekeeper who says one word about "Virtue Signalling" on the Left is going to get a lot of tightly focussed anger and no mercy in the slightest, because I have utterly lost my ability to pretend being able to even with that lazy, ignorant, vacuous, hollow, hypocritical sneer.
And also note very carefully where I said "the Right". I do not mean "conservatives", because I know conservatives who are deeply thoughtful and insightful in debate, even where I disagree with them. (You know who you are.) These people are not "conservatives": they are Right Wing Culture Warriors of the first order, each and every one of them worse than any of the examples on the Left they like to point at accusingly. They are hypocrites and sophists, and if I were to say that they aren't even self aware enough to understand the depth of how fractally wrong they are, that's the charitable
option, because the alternative is that they do know, and knowingly and deliberately spout this not-even-wrong poison on purpose.⁷
But what really got me furious at this was that in every word, and behind every assumption, they are taking even the possibility
of agency away from Greta Thunberg, on the assumption that it is impossible for an autist, let alone a young one, to have any. And that ableist bullshit is something which cannot be allowed to stand.
(And in answer to the strawman Vanstone and O'Neill preemptively raised in answer to this point, no, it's not that you're not allowed to say that an autist is wrong, it's that you two are trying to claim that she's not even capable of putting forward an opinion: you aren't arguing against her argument, you are attempting to nullify
her argument: you are trying to make her argument not have
to be answered, purely because she is autistic
. That is the definition of ableism, and that is the definition of ad hominem
, and that's the high
point of your exercise in intellectual masturbation.)
 Former Federal Liberal minister for keeping foreigners out, and not the worst Liberal Immigration Minister in living memory but only because all her successors seem to have held a "yeah? Well hold my beer and watch this" attitude to the job, leading to the current incumbent, Dutton.
 A sort of Renaissance Horrible Excuse for a Human Being
, making him overqualified for the Center for Independent Studies.
 including, but not restricted to why adults are right about everything, why people under 18 years old are entitled to their opinions but shouldn't ever actually have the right to express them, why children having agency will lead to them being "entitled"⁴, that and why it's a bad thing that you're not allowed to give kids these days a "clip across the ear".
 presumably: entitled to having agency, which is a bad thing if they should disagree with people like Vanstone and O'Neill, but a good thing if they are a member of the Young Liberals.
 I dunno, as an autistic 16 year old making speeches to large groups and international gatherings in her second language
, I don't think she's doing too badly myself, but then I'm also autistic and presumably don't have the right to an opinion either.
 and just, I don't know, look up a list of logical and informal fallacies
and check off the ones which aren't
present in that discussion.
 Which is to say, I have in mind a list of people who I very much suspect to be exactly that sort of populist authoritarian⁸
 Some people say that "populist authoritarian" is a good start for a definition of "fascist". (When followed by such details as public subsidy and support of citizens in good standing; no support for and arbitrarily punitive measures of severe strictness against
non-citizens or citizens not of good standing; a restrictive and shrinking definition of who counts as a
citizen of good standing; expanding militarism and militaristic fetishism; and the manipulation of elections to ensure a predetermined result, up to and including bribery and threats of violence. So at least we're safe on that last count. Guess there's nothing to worry about, then.) I couldn't possibly comment. That name you're thinking right now, I didn't say it.
I did a talk, and the second time I gave this talk, it was recorded. (Well, most of it. The last couple of minutes of Q&A were dropped because the first five minutes was spent swearing over getting the slides working. But that first five minutes has been cut, so it's straight into the talk.)
It's called Autism 101
, and seems to have been well received.
It turns out that advocacy is hard, especially if you have a condition which affects communication with Neurotypical people, because about 90% of advocacy is
in convincing NTs to help. And, of course, it is difficult to convince people to help with a condition which affects communication if you have a condition which affects communication, because Irony is a universal law alongside Gravity and Stupidity.
And it's especially hard when the responses are mostly along the lines of "That's great, that's awesome, that's a really good project, you're doing great stuff here, but you can't have what you're asking for." It's navigating a labyrinth, where most of the paths lead to dead ends, but the very act of getting there has made other paths unavailable. No, really, the movie Labyrinth
is a very good analogy for it. The first trick is finding a way to even get into the labyrinth, and then you have to find out how to progress from the outer ring, and then it's dead ends and changing paths and oubliettes and goblins and people who may be helping and may be sending you on a wild goose chase, and you can never tell which. It's exhausting.
But I keep doing it because I can, on behalf of the ones who can't, so that they don't have to. Thus all the hard work and fighting for each small win. A talk at a conference, which turns out to be popular. Eventually, soon, a website to tell autistic students how better to deal with being
autistic students and their teachers and peers how to deal with them. And eventually, I'm hoping to make that website include information for staff on the spectrum. And then for people who think they might
be on the spectrum (because if you are on the spectrum but don't know it, then you will feel not included by information stated to be for autistic people because you don't know whether it applies to you or not and don't want to assume, even though that exact feeling is in itself a sign that it probably does apply to you and did I mention Irony as a universal force?). And for parents who think they have autistic children and don't know what to do about it (and don't know where to go for help, and might wonder what's so bad about Autism Speaks anyway).
And eventually (maybe sooner than I dared hope) there will be quiet spaces on campus marked on the map (for those who know to look). There will be quiet rooms set aside for the use of autistic people, to recover a spoon or two between classes. There will be not just information, but assistance, and advocacy, and maybe even community between the autistic members of the university community, and beyond.
This isn't all me, by any stretch. I have a co-conspirator, who is also on the spectrum, and is also pushing and talking to people and making contacts and running at the limits of her spoons, and she has achieved more than I would have been able to alone. Still, it's basically just the two of us doing this (and both of us have actual jobs that we're doing at the same time). But we're pushing through, as best we can. And if we're successful we will know it because then it will not just be us two anymore.
Because this is needed. I have personally met people who are worried about their children and didn't know how to help them. Who are autistic and in the closet, whether they're passing and successful or being bullied and are struggling. Who don't even know they're on the Spectrum, and privately worry about why they're different and why they can never let those difference be seen. These aren't hypotheticals, these are real people, and they all deserve better.
Autistic people who are struggling need assistance, and, because Irony, they need help to even ask for that assistance.
Autistic people who have been passing and successful deserve to be able to own their autism and wear it with pride. And that's not just for them, because autistic people generally need to see people who are autistic and succeeding
. We need role models. Because so far the only autistic people most people see are on the media, and they are almost universally freaks, jokes, or both. We need people to see us as people
, and, because Irony, those of us who have succeeded have typically done so because the first thing that they learned was how to hide it. The picture of autism is of failure because success is invisibility. The autistic people who are struggling need to be able to see that it doesn't have to be that way. That they don't have to be ashamed of who they are. And the parents of autistic children need to able to see that, despite what they may fear, it doesn't have to be a tragedy. That their children too can be proud of who they are.
There was a time when I used those words, because I was ignorant. And because everyone around me used them, and I thought that that’s just what you did.Retard.
They were words we used at them
. I mean, we didn’t know any, but we knew about them. They were the insults we threw around the schoolyard at each other. That kid who annoyed you wasn’t a retard
retard. He wasn’t living at Mont Park, where all the crazy people and… well, retards lived. It’s just a word you used.Mong.
Short for mongoloid
, which is what they used to call people with Down’s Syndrome. We didn’t know any of those either. But we saw pictures in encyclopedias. It was just a word, to us. A nasty word, to be sure. But, as a boy, everyone was nasty to each other most of the time, whether in earnest or in jest. I could never quite be sure which was which. But, desperate to fit in, I used the words too.Spazz.
Short for “spastic”. We didn’t know anyone with Cerebral Palsy either. In our ignorance, we assumed that their minds were as disabled as their bodies.
Over time… lots of time, I learned. I learned that girls could be even nastier than boys, even if they didn’t call you a retard to you face. They’d call you a retard behind your back, to your friends. And they’d laugh. The girls, and
I learned that those words were corrosive, even if used lightly. Especially
if used lightly. Not just to the person to whom you use them, but to the person who says them. Because the more you say things like that, the more normal you think it is.
I learned that there were other words, in other contexts, which were just as bad, if not worse. Wog. Chink. Boong. Bitch. Faggot. Worse than those. People told me that those words hurt, and I believed them.
After more time, some words fell out of use, and others entered the lexicon of hurt. Now there was the autist, and the Aspergers. One was an Other, a boogeyman that everyone knew, but no-one had met, like the mongs
of old. The other was a joke. Sheldon Cooper, and Zack Addy. Someone who was good at technology and bad at everything else and not only safe but acceptible to laugh at.
I joined in. Self-deprecatingly, of course. At a professional day, they got us to play some pseudo-psychological game, and sorted us into groups based on “personality type”. Most of us in the IT area found ourselves in the INTJ group (or something, it didn’t really make sense), and when the people running it were describing the qualities of our group, they said “you guys are known for…”, I interrupted with “Asperger’s Syndrome.” And everyone laughed.
But the joke was increasingly less funny. And I sought, and got, a professional opinion. That opinion was that it’s not a joke when it’s true. And now I’m hearing new words.Autistic shrieking.
Because it’s not nice to use Downs Syndrome any more. They’ve been let out of institutions and into mainstream schools, and it turns out that they were people all along. But autists… They’re either funny, like Sheldon, or the sort of person you’ve only heard of, who smear shit on the walls, or so you’re told. So it’s OK to use them as epithets.‘Sperging out.
And I don’t want to stop them and ask them to say that again to my face when I overhear them say it casually walking down the street, but then again, I really do want to. But I don’t. Because that’s what they think of me: a temper-tantrumming man-child with freakish IT abilities and no social skills. And in my silence, that they don’t even notice, I wonder if they’re right.
(As an aside... what does it even mean? Does it mean the person they were talking about was obsessing about something? Does it mean they were having a meltdown? Does it mean they were showing more intellectual curiosity and enthusiasm than was deemed socially acceptable?)
Besides, it’s cool to think that fidget spinners are stupid, and it’s fine to laugh at anyone who uses one. It’s not like normal
people find them useful. Because language shapes reality. Autists are around, everyone knows that. (So as far as "Autistic Awareness" goes, well done: people are aware.) Autists are more common than everyone thought; this is a reason for moral posturing and panic among some. (Anti-Vaxxers, and cure-seekers, and the people who want to rewrite the DSM to redefine the problem away, and the sort of people who want to build new, special, schools to put all the ASD kids into, because institutionalisation always worked so well before.) You probably know an Autist, so you know that they’re harmless, except when they go all… autistic
at you for no reason. I mean, you
don’t see why they should suddenly be upset, so it must just be because there is no reason. No real
reason. And if their problems aren’t really
real, then their solutions mustn’t be either. Therefore fidget spinners are stupid and it’s OK to write Op-Eds and comics and memes and blog posts about “how stupid are fidget spinners, even more stupid than yo-yos and Rubik’s Cubes. They don’t even do
anything. People who use them must be lazy and dumb and avoiding their real problems.” And when I call this out, and point out that some Autists find them very useful, then the reply is “Oh, but we weren’t talking about you
”. Unless the reply is “why don’t you get a sense of humour?”
We weren’t talking about you
, Paul, just those other
We weren’t talking about you
, Stavro, just those other wogs.
We weren’t talking about you
, Chen, just those other
We weren’t talking about you
, Sheldon, just those other
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.
What is the difference between a cage and a sanctuary?
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 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.)
Autistics Speaking Day, 2014.
When I write about Autism, who am I writing to?
[My Special Interest is linguistics, so already I have gotten distracted over how that sentence should, in theory, be "to whom am I writing", because dative. But the dative is dropped when the preposition is split in English, because it's fossilised, and no longer productive. And there's nothing wrong with that, that's just how English works. And then I got distracted for a moment about the "because noun
" construction, and how useful it is at summarising an entire field of study into one word, and how it expresses the idea of "there are lots of reasons for this, but this margin is too narrow for them, and they are left as an exercise for the reader", and then I thought that what that construction really does is act as shorthand for "there are reasons, and if I start enumerating them, I won't have any time for anything else." And then I thought that this aside could probably have been expressed as "I got distracted by the first sentence, because linguistics."]
Anyway, am I talking to other Autism Advocates? Because if I am, I'm talking to people who already know what I'm about to say. As soon as I mentioned a Special Interest in the above aside, they knew that I had to fight my way back to the point from it. So I don't think I'm talking to them, because I have nothing to say which they haven't experienced.
Am I talking to Parents of Autists? That's hard. I hope I am, and I hope they're listening. I've see parents, however, who don't care what I have to say on the matter. Parents in Autism Speaks, or Age of Autism, who are the only people who could possibly ever speak for their children, because any autistic person who is articulate enough to propound an opinion is by definition not autistic enough to represent their child, and anyone who is as thoroughly afflicted is, by definition, unable to articulate an opinion. Don't we hear the continual grief at never hearing the words "I love you"? I mean, I could get angry that they wilfully ignore the people who try to tell them the behaviours which mean
"I love you", but they're too busy looking for the correct form that they reject the message. i could get angry at that, but I'm usually too angry that they tend also to support anti-vaccination and chelation and systematic psychological torment in the name of "treatment". The Judge Rotenberg Center for the Torture of Autists still exists, and its operators have not been sent to the Hague in chains. Parents of Autists who don't listen to Autists don't anger me for that alone. And the Parents of Autists who do
listen to us have my respect. It can't be easy learning that your child is autistic, and seeking out a whole other culture and seeking to learn from them is amazingly hard: trust us when we say that we understand this, because we do that every time we walk out the door in the morning. So I'm not talking to the "you're too functional to be autistic" parents, because they're already shouting me down, and I'm not talking to the parents who seek out Autists and ask them what to do, because I don't need to talk to them: they're already listening.
Am I talking to Allists? Neurotypicals? People Without Autism? Because it seems sometimes that I could wear a sign and walk the streets of the city, screaming in people's faces, and they still wouldn't give a shit about what I say. The media generally seems to have four stories about Autism: 1) Doctors have found a (cause|potential cure) for Autism. (Spoiler: no, they haven't.) 2) Parent of an Autistic child is lauded for their bravery and hard work and success with a revolutionary new treatment for autism. (Which isn't to say that they haven't put in a lot of work, and come across something which works for them and maybe others, and it's not a bed of roses... but we never hear from the child.) 3) Tragic death/injury/assault/humiliation of an Autist, not only but far too often at the hands of their own parents. (And almost every. Single. Time. the Autism is used as a mitigating factor: that the child was autistic is used to make the crime not as bad, that it's understandable for the parent to have done this, and if you don't believe me, look up the Issy Stapleton case.) 4) Temple Grandin or John Elder Robison. I don't hear the voices on TV or the Radio of any Autists outside fiction who aren't these two. Not to begrudge them a voice, but if the number of Autists out there really is one in eighty-eight, you'd thing the news and lifestyle shows could at least pretend to find one of us to ask when there's news about us. But my experience so far is that Autism is a fascinating subject, but actual Autists aren't worth considering. Sometimes I feel like the woman in labour in Monty Python's Meaning of Life
: "What do I do?" "Nothing, dear, you're not qualified!"
Am I speaking to my co-workers? Some of them are really cool about it all: they couldn't care if I can make a phone call, so long as the work gets done. Some co-workers, on the other hand, keep asking me to do things like they're nothing hard at all, like go to meetings, and phone strangers on a daily basis, and remember something they just told me but which hasn't been written down, and I keep having to say "I'm autistic, remember?" I shouldn't have to keep saying it. I shouldn't have to keep defending my failures with that. And what I hate most about it is that I have promised myself that my autism will only ever be an explanation, not an excuse. But whenever I'm forced to remind the same person, again, that I'm autistic, it feels more and more like an excuse. Him forgetting that I might have difficulties raises the same demons I battled inside my own head for decades, the same feelings of inadequacy and uselessness, and that there was no excuse, except that I was a lazy failure. Autism gave me a reason, and a weapon to beat those demons down: I'm allowed to not be good at those things. I'm supposed
to not be good at them. I'm allowed to find them stressful and anxiety inducing and distressing and painful. I'm allowed to want to avoid them, and I should be allowed to whenever it's feasible. But when those difficulties are ignored, or treated like an annoying quirk, rather than something which can render me useless for days, then those demons sneak out and return to gnawing at my soul. But as I do have to keep reminding those co-workers, I don't think I'm talking to them, because they're not going to change their treatment of me anyway.
So, by the process of elimination, I think I've identified who I am talking to. ["To whom I am talking." Sorry. Reflex.]
You out there, who think you are Autistic, but aren't sure. Who are worried that everything you read about Autism sounds more and more like you're own life history, but have been convinced by Rain Man
and Autism Speaks that you
can't be Autistic. For everyone who is still trying to come to terms with your diagnosis, whether it was delivered this morning, or a decade ago. To children, teenagers, adults. To everyone who feels like they're the only person in the world dealing with this. I'm talking to you.
And what I'm saying is this: you aren't alone. You feel
alone, but we all do. To an extent that comes with the condition. (I don't know whether that's a necessary part of being on the Spectrum, or a simple result of growing up isolated from anyone who really understands you.) But I beg you to read Autistics Speaking Day posts, all of them you can bear, and to realise that you are learning something from each one: not what it is like to be Autistic, but how each one is familiar
. Each post will feel like an old memory; you may gain new insights, but they're insights into yourself
. And the more you feel that twist in your stomach as you read someone else's words describing your own experience, as you're never seen it laid out before, the more you should know
that you are one of us; that you have found your people. That you belong.
To you, I say: welcome. Hang around. You are under no obligation to say anything, but neither are you obliged to remain silent. Speak up as and when you are comfortable doing so. But I beg you to at least listen to your peers. Because it helps immeasurably just to know that they're there. And we understand.
Sílim go mbeadh sé seo breá le Bar-Barra... is dócha.
Tá sé ceoltoir as an tSiombaib é, agus tá cuid focail na n-amhrán atá:
"Is gaeilgeoir mé, tá Gaeilge mo chroí
(Ní dóigh liom go beidh ar maith leat an ceol: tá sé duine ó an tSiombaib leis a chuid Gaeilge air, atá a bhí mé tú a éisteacht é.)
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.
The Blood of Juana the Mad
So... a researcher who obsesses over a mediaeval manuscript, who is autistic, and works at the University of Melbourne.
I seem to have misplaced a decade somewhere.
It's Miss A's tenth birthday today. how did that happen?
BRB, checking down the back of the couch...
It turned out that the Cockatrice drawing
I knocked off in a couple of hours appeared on the front cover of the Cockatrice
publication. People have said that they like it, which is gratifying.
After a week of not quite panicking, things more or less worked for 12th night, heraldically speaking.
I ran Henri and Beatrice's last court, handing off to actreal
for Teffania's Laurel ceremony, and only almost
ruining it in the introduction.
The final court also included, amongst lots and lots of Cyphers, a Cockatrice, Prometheus, a couple of Silver Pegasi and a White Scarf, felinophile
being admitted as a Pelican.
The final court segued straight into the investiture ceremony, which I also did the shouting for.
After lunch, the first court of Felix and Eva, handled by actreal
. This was all about the Royal Household, and no awards (requiring entry into Canon Lore) were given.
After tourneys and other such entertainments, first court of the evening was run by Sorle, who passed off to the B&B Stormhold who allowed me to pass my Office of Goutte d'Eau off to pearl
, who very shortly thereafter was also admitted as a Laurel.
Paul Mortar was granted a Golden Tear, there was another Cockatrice, a Star and Lily, and Dante the newly appointed Deputy Goutte d'Eau was granted an Award of Arms.
was made a Court Baron.
The chest I made at Mistress Antonia's workshop did not win the Arts and Sciences competition, but it was very handy to carry our feasting gear -- and it fits almost perfectly into the boot of Mim's car.
People said nice things about my shouting, including that they were entertained when I pronounced people's names as they were meant to be, not as they might be read out naively.
Sunday was at a site a long way away. actreal
was not there, so I did the courts, and Sorle did his shouting duty at the tourney. One of the items of business was that the previous evening the children had chosen a king and queen by the finding of a bean in a cake. Miss A was the queen of the children. They came up in court to ask permission to hold a children's court, which was graciously granted (their Majesties seemed taken by the idea), and their majesties ran the King and Queen of the Children through a quick oath to Do The Right Thing, and granted them tokens. (Which was not expected or planned, but was a lovely touch.) Miss A in particular had a strong clear voice in court and her petition and answers were note-perfect.
During the day there was wandering, and talking, and Being Hit On The Head Lessons, and the Children's Court (they appointed their own lords and ladies of the court, and a herald, and gave out awards and prizes, and waved banners, and generally demonstrated that the College of Heralds and the various aspects of nobility will be in good hands when it comes their time.
I heralded the final court, which had a Golden Tear (for the Steward), a Star and Lily, several gifts and offers of fealty, and one huge glaring stuff-up on my part when the court was closed, we had had cheers for the King and Queen, and I then declared three cheers for "the Barons and Baronesses, the Peers, and the populace of Stormhold
I didn't even realise I'd said that (at the top of my lungs) until the Kraé Glassians all looked at me horrified, gave confused cheers (knowing what I meant), and then informed me what I'd said.
Autopilot can be a bitch.
And there's documentary evidence of the coronation.
And Sorle Canon was right there, so all the CHAF forms went straight to him then and there, and it's already up on Canon Lore