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.

Have you ever had that dream?
You know the one:
You have a job to do, but you're not quite sure what it is.
Or how to do it.
Or why it's important.
Or what to do it with.
Or where.
But you know it's important.
And everyone's angry.
And it's your fault it hasn't been done.

Have you ever had that dream?
You know the one:
Someone's telling you something really important.
But you can't hear them.
And when you can, you can't understand the language.
And when you can, you can't hold on to the meaning.
And when you can, you forget it right away.
And you remember much later that there was something important.
But it's too late.

Other people say they dream of flying.
I dream of dreaming of swooping and gliding.
Other people say they dream of talking to important people.
They dream of being there with them:
Treated as important,
Their opinions listened to,
Their anger valid and relevant,
Their ideas acted upon by others.

Have you ever had that dream?
You know the one.
Everyone's angry with you, but you don't know why.
Nobody will tell you what you said.
Nobody will tell you what you did.
Nobody will tell you what rule you broke.
Nobody will tell you what you should have done.
Nobody will accept your apology for ... something really bad, apparently.
It's all your fault and you have no idea why.

It's a Dream Life.

You know, cowards who go anonymously onto social media, and vilify people, and harass them, and bully them, and engage in defamatory statements, they need to be responsible for what they're saying. I mean, I can't come out here, and you can't come here, and start doing things like that, we all know who each of us are, we're responsible for the things that we say and that we do.

... We all know that it's Parliament that's the appropriate venue for that; where you can go and say whatever you like about anyone, without consequence or repercussion, and nothing you say can be used against you, even as a defence of truth if anyone goes on social media and hurts your feelings by accurately reporting things you said and you sue them for defamation.


I fixed your statement for you there, Scotty.

Normally, one waits until after the election to concede defeat.

Still, I'll take that over the alternative.

Covid19 is to the concept of mass gatherings and casual trips to shopping centers as AIDS was to the concept of orgies and casual sex.

Murdoch media at Dan's Presser today: "What's the point of a road map if you don't follow the road map?" (very loud subtext: "you said we'd open all the businesses on this date and it's this date and you're not opening the businesses, why are you Stalin?".)


The thing is, oh twerp from the Herald-Sun, that's not how road maps work. It's not "drive west until midnight on the 27th and then turn right, and lets just assume we were travelling at the correct speed that whole time and ignore those traffic jams": you keep driving until you get to the correct intersection, even if you should have been there hours ago. We are in lockdown until we are in the correct place to do so, even if the predictions made on when that would happen turned out to have been optimistic.

Remind me never to go driving with you, especially through Richmond. If you drive a car like you're demanding the state be driven, we would have ended up roof-down at the bottom of the Yarra months ago.

Dear Entire Advertising Industry,

I know it's been going on forever, but I just saw it again, and thought I had to say something.

When you advertise painkillers and cold and flu drugs, you really don't have a lot of range, do you?

It's just that if you're going to advertise cold and flue drugs, marketing them as being suitable to mask over your symptoms while you go to work still sick and still contagious might not be the best possible message to be sending: right now, for the last seven or eight months, and for the foreseeable future.

I mean, I know advertising is replete with sociopathy as an industry and as a concept, but you could at least try to hide it a bit.


Not a lot of love,

Me.

“I wish it need not have happened in my time,” said Frodo.
“So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide.”

But here are my thoughts on Covid-19, because "thought" seems to be a vanishing rare thing on that topic:

• Q: Is it really that dangerous?
  A: We don't know yet. It's likely that its total mortality rate is going to end up lower than you might expect, because many, most, maybe even almost all cases are mild to unnoticeable. If you've got a mild sniffle, or no symptoms at all (as has also been reported), then you're not going to go report to the ED unless you're already there or you're really cautious. The mortality rate looks high, at the moment, because the people being reported are the ones who are really sick, and they are more likely to die. But they're being reported because they're really sick, so that skews the population you're measuring. But this is still early days, and we haven't had time to collect and analyse the data. But we will eventually have a pretty good idea what's going on, because
  
• Q: Is it going to be endemic?
  A: It already is endemic. Covid-19 is already out in the world, and it's not going to go away. It's got a long, symptom-free, contagious incubation period, so by the time it was noticed, it was already outside China and spreading. It's now thoroughly endemic in China, Iran, Italy, Japan, Korea, and the USA.
  
• Q: Why hasn't it spread so quickly into the US?
  A: It almost certainly is already endemic in the US, and has been for a long time (as this sort of thing goes). It's just that the US doesn't have a Health System, it has fifty-mumble of them (fifty states, Washington DC, Puerto Rico, plus the Federal system.
  Except... even those aren't systems, so much as weakened bureaucracies trying to keep health insurance companies and their associated service delivery locations (also known as "hospitals") under some sort of co-ordination, with no noticeable success.
  And the Federal system is under the control of a demented sociopath, who is more concerned that the numbers make him look good than that the situation is actually under control, and that he has flunkies fighting for his approval than that there is anyone actually competent in control of anything. Do not expect any useful, or even correct, information out of the White House. The sorts of people who will be getting information out there in the US system will be doing so at Li Wenliang levels of personal risk.
  
• Q: If it's already out there, then aren't the quarantines and travel restrictions just a waste of time then?
  A: Yes and no. Yes, in that it's coming anyway. In fact, it's already here. If there's been travel somewhere, they should expect to have been exposed. No, it's not a waste of time, because that's what the authorities are buying: time. Time to build up information, time to determine treatment regimes, time to get emergency measures in place, time to spread out the initial wave of cases, so they don't all turn up at the ED at once.
  
• Q: So I should be worried?
  A: Yes, but probably not as much as you think you should. It's looking to be worse than the usual flu, but probably not 1919 worse. And if you're relatively young, then you might not even notice it. But the older you are, the worse it seems to be, so you probably should be worried for your elderly parents or grandparents, and for god sake don't go to a retirement village or nursing home if you've got a sniffle.
  
• Q: Do I need to hoard gather supplies?
  A: No.
  
• Q: So why can't I get toilet paper or hand sanitiser?
  A: "A person is smart. People are dumb, panicky dangerous animals and you know it." (— Agent K, Men in Black)

This is not medical advice. See your doctor if pain persists. Do not exceed recommended dose.

I've recently had my forty-sixth birthday, and it affected me more than I thought it would. I came to the realisation that I'm no longer getting older, now I'm just getting old.

Normally I'd say goodbye to the year with the wish "may next year be better than last."

At first, that was optimism.

Then it was hope.

Now, it just seems to be begging for trouble, with the incoming year hearing it and responding "... hold my beer."




Let's all just wish for a new year without any fucking Nazis in it. For a change.