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.

I've been sitting on this in a tab for a few days, trying to get my head around how angry it makes me: To get ahead as an introvert, act like an extravert. It’s not as hard as you think.

It's as patronising and supercilious as you'd guess from the title.

Have you tried... not being autistic an introvert?

I'm not really exaggerating, there.

"Nor is it as hard as you may think. Research shows introverts overestimate the unpleasantness and underestimate the “hedonic benefits” of acting extraverted. One study even suggests introverts feel more authentic when acting extraverted."

So... Being introverted is dumb and wrong and you'd feel so much better if you just pretended to be extraverted, because being extraverted is just better. Introverts think there's a downside to pretending to be extraverted, but what would they know?

Which, frankly, sounds like exactly the sort of bullshit that big loud cheerful extraverts have been yelling at introverts for, well, forever. "CHEER UP AND TALK TO PEOPLE AND YOU'LL FEEL BETTER! GO TO A PARTY! IT ALWAYS MAKES ME FEEL BETTER!"

Then I looked at another open tab, and realised that someone else had already made a better counterpoint. It is:
Mitchell, P., Sheppard, E. and Cassidy, S. (2021), Autism and the double empathy problem: Implications for development and mental health. Br J Dev Psychol. https://doi.org/10.1111/bjdp.12350

Abstract
This article proposes a link between autistic people being misperceived by the neurotypical majority and their being at risk of poor mental health and well‐being. We present a transactional account of development in which the misperceptions (and consequent behaviour) of the neurotypical majority influences the perceptions and behaviour of autistic people such that they become increasingly separate and indeed isolated from mainstream society. This jeopardizes their mental health and prevents autistic people from developing to full potential. The situation is not only problematical for the development of autistic people but is also to the detriment of wider society, in so far as autistic people are effectively prevented from contributing fully. This account assumes that some (not necessarily all) autistic people yearn to be included, to be productive and to be useful. It thus directly opposes accounts that view autism as an extreme case of diminished social motivation.

I think it's worthwhile to quote and add emphasis to this paragraph from the Background:

A further aim is to explore the developmental consequences of this barrier for each group (autistic and neurotypical). Autistic people, who are in the minority, might respond by trying to hide or camouflage their autism‐specific style of social interaction and attempt to emulate the social interaction style of the neurotypical majority (Hull et al, 2019). This strategy could enable a degree of access to neurotypical social experiences and indeed a degree of acceptability therein, but at psychological cost owing to the effort that has to be exerted (Hull et al, 2017), coupled with the stress associated with the risk of being ‘found out’ (Cage & Troxell‐Whitman, 2019). Worryingly, research is identifying a strong association between camouflaging autistic traits, with poor mental health, well‐being, and high rates of suicidal thoughts and behaviours in autistic people (Cassidy et al., 2018; Cassidy et al, 2019). We urgently need to further understand the risks to mental health arising from the stress associated with this camouflaging behaviour, coupled with the sense of isolation, and consequent feelings of loneliness. Our aim is to explore whether such experiences could lead the individual to feel not valued and unwanted, perhaps leading to a fatal outcome if the individual feels they are a burden on society and that the world would be better off without them, with suicide perceived as the only available option.

But no, please, continue to explain to me how all my problems would be solved if I just used all my available resources to desperately pretend to be something I'm not in the hope it will make other people like me better.

No autist has ever thought of that.

To stave off all-consuming anxiety, autists require a larger than normal amount of routine and predictability to be able to function.

Covid19 increasingly, and globally, means that there is no routine, and nothing can be predicted.

If you've got people in the spectrum in your life, they will be needing something routine to hold on to right about now, and for the forseeable future.

And on a lot of these traits, autists are just like most people except more sensitive, so if you're not on the spectrum, you may also need something routine and predictable to center yourself on before long.

Just saying.

(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.

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.)

---

[1] 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.

[2] A sort of Renaissance Horrible Excuse for a Human Being, making him overqualified for the Center for Independent Studies.

[3] 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".

[4] 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.

[5] 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.

[6] 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.

[7] 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

[8] 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 unpersons non-citizens or citizens not of good standing; a restrictive and shrinking definition of who counts as a person 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.