Catsidhe

It is the second of November as I write this, because of course it is. So... I apologise for not leaving myself time to make this shorter.

Or to the point, whatever that point is. (Edit: I've figure out what the point is, and removed a half-dozen side tracks. For future reference, they included

• How closely do ADHD and Autism overlap? How many of the understood common symptoms of one are actually symptoms of the other? Can a symptom be common, but show up in different ways depending? Can one have both versions? Oh wow, I'm almost writing that essay just in the asking of the questions.
  
• What does "Neurodiverse" mean anyway, and who is included within it?
  
• Are there Neurodivergent conditions which aren't inherently disabling? (I'm thinking especially of Synesthesia.)
  
• What does "Disability" even mean?

So. Anyway. Incipit:

Who speaks for us?

In the beginning there was Autism.

Then Asperger's Syndrome was discovered, and it was technically a different thing.

And that's the first complication, because that division created a barrier between autists.

We now know that one of the characteristics of Autism is linguistic differences in early childhood. Kanner's Autism was where productive linguistic development was slow, regressed, or was non-evident. Asperger's was where it was advanced or normal but weird. Echolalia and non-verbality are not typically developing, but then, neither is a five-year-old who not only knows what a "palaeontologist" is, but how to spell it. (Was that just me?) But that difference wasn't seen as a "how, precisely, was your language affected in childhood", it became "are you a highly verbal probably gifted 'high functioning' Aspie or an nonverbal probably intellectually disabled 'autist'?". And that divide didn't help. It still doesn't. Not least because it's an artificial division.

There are still people who proudly, angrily, identify as "Aspies", not least because they don't want to be tarred with the stigma of being associated with the sort of people that groups like Autism Speaks tells everyone that autists are. On one level, I can't blame them. They're desperately holding on to something which makes them "special" rather than "disabled".

It didn't help when new research showed that Hans Asperger might have gone along with aspects of Aktion T4. For those of us for whom the term "Aspergers" meant something, it was being told, all over again, that our very identity was bad and wrong and we weren't going to be allowed to have it. Here is this thing which gave your struggles in life a name, which gave you something to hang on to to be proud of in who you are, only now we've done some checking and we're not just taking it away from you, we're poisoning it and all its associations forever. "Didn't you know, kid? Your Mom's a psycho Condition is named after a child-murdering card-carrying Nazi."

A rose by any other name might smell as sweet, but you go and try to sell a bouquet of a dozen long-stem Goebbels' Stinkblossoms on Valentine's Day.

But that's by the by. "Asperger's Syndrome" is, for several disparate reasons, now deprecated. And that leaves one arching term for the whole spectrum.

There are terms to try and cleave distinctions into the subtle blendings, but they have their own problems. "High" and "Low Functioning" are high on that list. The consensus among Autists is that the way they describe things, they oversimplify to the point of uselessness. The "Highest" functioning autist is, by virtue of diagnosis with autism which is, remember, defined as something which causes disabling difficulties in daily life, going to be simply unable to do what may seem like simple things. And the "Lowest" functioning autist, who may struggle with self-harm and a complete inability to vocalise, might still have gifts and wisdom and insight, even if it's locked within them until the right technology or trigger is found to reveal it.

And yet, there is a quantifiable difference between someone who is odd but can mask their autism in public most of the time, and someone who can't feed themselves. It's just that we need a better term for it. Maybe "Higher" or "Lower Daily Care Needs". It's not an absolute term, and it's an average. Someone with "Lower Daily Care Needs" still needs help with things.

Doesn't roll off the tongue as neatly as "High Functioning", though. Even less than "Aspie" vs "Autist".

Tell you what does seem to roll off the tongue really, really easily, though: "Not like my child." That never seems to get old.

There seems to be a particular sort of Autism Parent who has heard of the Spectrum, but only sees it in black and white. There are, in their world, two types of autists: those who are "like their child", and those who are not.

They've mostly stopped explicitly stating that autists who are not like their child aren't actually really autistic. But sometimes the implicit statement is very, very loud.

Look, at one level, they have a point: those who have more need of support and less ability to care for their own needs do need some way of being described. And it's a human and linguistic thing that people want something short and snappy to do so.

The trouble is that the people who are loudest about this who aren't themselves on the spectrum seem to be doing so with the implicit goal of dividing autists into those who need and deserve help, and those who basically don't. Those who can speak for themselves, and those who need their parents to speak for them and how dare you other sort of "autist" pretend to have any insights or concerns.

And I'm alarmed by how many of these Autism Parents have power, whether because they're, say, politicians, or the head of an Autism Science Foundation who just happened to be a former board member of Autism Speaks who only left because that organisation became a bit to antivaxxer for her to stomach (well done, have a cookie), and is on tape describing, in front of her autistic child, how she sometimes felt like driving her car off a bridge with her child in it.

The thing is, I think we need terms for that. I mean, how could we, as autists, have a problem with Autism Parents? Our parents are autism parents. Some of us are autism parents. Some autism parents are autistic parents.

But there's some who aren't that. They're crusaders for exclusion and shutting down who they see as "the wrong sort" of "autists". By which, typically, they mean any autist who is able to speak for themselves, and especially who sees that very ability as a gift and a duty to use on the behalf of those who can't.


I guess where I'm going with this is: an open reply to Alison Singer. I sympathise with your problems and your difficulties with your autistic child. I really do. I also sympathise with her difficulties. And what I would like is to be able to know what she thinks, and to improve her life, and your life.

And, yes, there needs to be some sort of agreed way of describing the severity of affect of autism: there needs to be some way of describing succinctly that one person needs more support than another.

But.

Needs aren't static. I might be giving a public talk in the afternoon, and be unable to decide what to have for dinner in the evening. (Not "ambivalent" or "indecisive", but "paralysed".) I might write code that will be, unknowingly, relied upon by thousands of people, and also unable to remember which bills I haven't paid yet. My functioning is uneven, and when I've run out of spoons, all bets are off. And I might not even know what my own support needs even are.

And, quite frankly, when it comes to deciding who is valid in being allowed to speak or not, I do not trust you or your ilk to make that decision. Not least because you've clearly made your decision, and the answer is that it's you the parents, not us the verbal autists. Or, if you're charitable, that you want "profound autism" as a binary thing, where every autist can be divided into "profoundly" autistic or, as far as you're clearly concerned, "not" autistic.

I don't trust you, Alison Singer. The organisation you made your name in, Autism Speaks, is a self-serving behemoth which does, as far as I can see, almost exactly nothing for autists. Its purpose isn't anything to do with helping Autists. It was created and is maintained for you, Allison.

I don't trust you, Alison Singer. I remember Autism Every Day. You have been complicit in making autists who find your material first, hate themselves. What you have said, the organisation you have lead, has made autistic people see themselves as broken, as monsters. You have done harm to autistic people.

When autistic people are upset at terms like "patient" and "intervention", it's because people like you refuse to accept anything less than ABA, a theory which was designed by a person who literally said that autistic children aren't people, merely person-shaped. It's people like you who are responsible for the Judge Rotenberg Center still existing; a place where disabled children are tortured with strap-on Tasers for crimes like "saying 'no'," and "flinching because they fear getting an electric shock."

I want autists with high care needs to have a voice. I want the families of autists to have their voice. And I'd quite like also to be allowed to have a voice.

But here we get into the Tolerance Paradox: Despite what you say, I don't want to silence you because you are the parent of an autist. What I have a problem with is your evident decades-long campaign to shut down my voice and the voices of people like me.




Wow. I got angrier than I thought I would. Time to press "post", I guess.

(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 disabled. Usually.

How I am is how I've always been. In the normal course of events I am just how I am.

Normally.

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.

Words cut.

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 your friends.

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 retards.

We weren’t talking about you, Stavro, just those other wogs.

We weren’t talking about you, Chen, just those other chinks.

We weren’t talking about you, Sheldon, just those other spergs.

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.

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.)

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.

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.)