Saturday 16 December 2017

The 'Bogeyman' of the 'Low-Functioning'

It seems like every time an autistic advocate pops their head above the parapet and objects to some maltreatment of autistics, especially autistic children, somebody comes back with “but-what-about-the-low-functioning”, dragging in things like poop-smearing, meltdowns and head-banging. “You’re not like these kids, you don’t understand!”, they exclaim, again and again. As if we’ve never heard of such things, or done them ourselves, and as if ‘those’ autistics are a different species.

The ‘low-functioning’, in effect, have become the modern bogeyman. The stereotype that gets trotted out, time after time, cast as “the ones who really do need a cure”, and dragged out as defense against those of us who oppose things like bleach enemas, turpentine drinks, ABA, GcMAF, chelation, hyperbaric chambers and the like as false ‘cures’ for autism.

But I say casting them as this bogeyman is nonsense, a chimera, a false construct.

Why? Because –

1) It fosters a division that isn’t actually there. Functioning levels are actually meaningless. There aren’t any autistics, even adults, who are completely ‘high functioning’. Many of us were like ‘those kids’ when we were young - and some of us still are. But regardless of our apparent ‘functioning’, we can still totally support the neurodiversity perspective.

(There’s also a hidden threat in this - any of us, if we lapse in our ‘high functioning’, could also be subjected to these treatments – and sometimes have been. So basically, the underlying message is “let us do what we want to these kids, or we’ll do it to you too”.)

2) It presumes that the ‘treatments’ will actually help them. I’ve written about ABA before, it’s compliance-training, not a ‘cure’. And then there are the bleach enemas and so on. How anyone can think that these are a good idea to do to anyone is beyond me. How they think it’s going to ‘cure’ a neurological condition is even more perplexing. Yet people do so, causing huge physical and psychological harm to the children. Then they credit any advances the child makes to these bizarre and dangerous ‘treatments’, as though autistic children never grow and mature on their own.

3) It presumes that ‘extreme behaviours’ happen ‘just because’ of autism. We know this to be not true, but even when we try to explain the possible reasons for the behaviours, and offer advice and support, we’re often ignored or derided. Meanwhile, the autistic child/ren in question are indeed suffering - from lack of understanding, lack of supports, sensory overload, social stress, bullying, harsh ‘treatments’, falsely low assumptions of their intelligence, rejection, even institutionalisation and electric shocks… the list is a long one.

4) It presumes that the ‘low functioning’ are somehow different - to other autistics, and indeed other human beings. It casts them as virtually sub-human. They can no longer ignore the humanity of ‘high functioning’ autistics who speak up (though some still try), and so they focus on this group instead. But not only are functioning levels nonsense, as I’ve already said, I’ve read quite a bit of the writings of the ‘severely’ autistic, and I’ve never found anything in these that indicates their brains are radically different to other autistics. The differences are a matter of degree, not of kind.

5) It assumes it’s okay to treat even the ‘different’ like this. This is the crux of it really. Ultimately, it’s not even about whether the ‘low functioning’ really are separate/different from others, or whether the treatments prevent the ‘undesirable’ behaviour. It’s that it’s NOT OKAY to treat ANYONE like this. Ever.

It’s not okay to treat people like dogs, and browbeat, coerce, and manipulate them into submission. It’s not okay to shove bleach up their bottoms or down their throats, force them to drink turps or seawater, inject dodgy blood products into them, starve them with severe diets, give them electric shocks or subject them to chelation that leeches vital elements out of their bodies. It’s not okay to put handwash in a kid’s mouth for stimming, or forcibly hold their hands down till they stop flapping, or anything else that forces them to suppress their very way of being in order to be ‘acceptable’.

None of this is okay. And saying that it is okay because someone is a ‘low functioning’ autistic, is a breach of the human rights of ALL autistics. If even one of us is subject to these things, we are all at risk. And we know it. Even if we don’t think about it consciously, deep down we know it.

This is why we protest.

This is why we say ‘no more’, and ‘nothing about us without us’.

This is not just about preventing abuse, but about demanding our human rights.

So enough with the bogeyman. Enough with trying to scare us and parents of autistic children, enough with trying to silence us, enough with a false separation between ‘them’ and ‘us’, enough with casting the very children who most desperately need acceptance and understanding and support as some kind of demon or sub-human.



Friday 8 December 2017

That Executive Dysfunction Thing

Lately, I’ve noticed quite a few posts about executive dysfunction disorder in autistics. It’s caused me to think about my own. It’s not something I normally talk about much, and I think it’s the same for others on the spectrum, because why would you want to talk about something that makes you feel a failure?

But now it’s coming out of hiding, and I think this is good. The more we air our difficulties, the more we can accept it as part of our autistic nature, and learn to work with it rather than bash ourselves up for it. We can stop feeling like there’s something ‘wrong’ with us because we ‘can’t get our lives together’. It’s both a practical thing and a self-esteem thing, in other words.

For me, it was an issue long before I had any idea that I am autistic, or that there was a name for my disorganised state. Though my house is (usually) tidy, it being really clean is, shall we say, a less frequent occurrence. Dishes pile up, floors get grubby, the toilet needs cleaning, dust balls threaten to mutate into a different lifeform. Then I will have a sort of mad dash around, cleaning and scrubbing and washing and vacuuming, ending up exhausted, but feeling pretty virtuous!

In the past, however, these cleaning jags often meant I’d start cleaning one thing, say the bathroom sink, then I’d notice the mirror was dirty too, and start on that, and then think ‘Jeez, I should really do the bathroom cupboard’, and empty it out, but before I finished that, I’d see that the wall above was dirty… And then I’d go to fetch something for cleaning it, and notice that the wastepaper bins needed emptying, and while I was doing that, I’d see something else which needed doing, but in the middle of doing that, I’d wander by the bathroom and remember I hadn’t finished that either… before I knew it, hours would have gone by, and I’d have half a dozen incomplete tasks, stuff lying around everywhere, and be too drained to finish any of them.

I’d also often forget appointments, uni lectures, etc, or have a mad scramble to get to them on time. I would frequently arrive late, all sweaty and anxious, feeling like a fool, and never quite recovering my poise. Then I’d go home and crumble into tears, vowing to ‘do better next time’, without having the slightest idea how. I often felt like I was stumbling from one disaster to another, like a firefighter battling summer drought fires - as soon as you put one out, another starts.

And now? Over the years, I’ve learnt a lot about self-management. Appointments go on my calendar, hanging in a prominent place. I have a daily ‘to-do’ list whiteboard, another on the fridge for the shopping list, and I could really do with a third for the ‘weekly to-do’ list. I also have a whiteboard by my desk, for writing and other creative tasks. I have some fairly rigid routines around evening tidying-up, so that I don’t wake up to a mess. I use my cellphone or my bedside clock as an alarm, and a kitchen timer. I work hard on staying on track.

And yet. I sometimes still arrive at things late. I don’t necessarily get around to finishing my ‘to-do’ lists. Things get shoved to the next week’s list, and the next, and the next. I forget to use my various devices. And so on. Not to mention that I have CFS as well, and other health issues, that make cleaning even more difficult than it used to be.
And one thing I’ve never managed to do much about is erratic sleep patterns. Just last week, talking to the dietician (I’m pre-diabetic), she was talking about the importance of ‘getting back’ to regular sleep habits, so that my meals get regular too. I was too embarrassed to admit that I don’t really have regular sleep patterns to get ‘back’ to! I might be up till two am one night, sleep in till ten am, then crash early the next night. I force myself into ‘proper’ bedtimes when I have to, but I never seem to be able to keep to them for long.

On a daily basis, keeping myself ‘on task’ means, even now, with all the ‘box of tricks’ I’ve garnered, a constant jarring wrench of my attention back to that task, over and over. And, I must emphasise here, I don’t fit the criteria for ADHD/ADD. At all. It’s just that, well, I see things, or I think about things, the state of the nation, the state of the world, the future, or ooh look at the pretty butterfly, or the lovely pattern of the leaf shadows outside, or God that wall is grubby, and should I clean it now, or, or, or… and then I have to remind myself - hey! You’ve got a job to finish here! Pay attention! Repeatedly.

It’s rather like you’re trying to go for a walk, only you have a ‘gammy’ leg which means you keep staggering off the path. But a friend keeps dragging you back on. Except the friend is also you. Imagine how difficult your progress would be, or how little you’d make. That’s what it feels like.

But I’m not sharing all this for sympathy, or hints, or anything like that. No, the point of this post isn’t really any of that. It’s about my amazement at people who don’t have EF issues. I’ve been watching them my whole life, and I still don’t know how they do it.

You know the sort of person I mean. The flatmate whose room is always tidy, or the workmate who effortlessly completes their daily assignments. The neighbour doing garden work at ten am Sunday, chatting to a mate or his wife at the same time, then going out for the afternoon. The relative who goes shopping without even a list, and yet never seems to forget anything important. They just… do things. One task, after another. After another. All day. Every day. Without any seeming effort or trouble keeping themselves on task. With no jarring or dragging. Huh.

Sometimes I’ve seen such people complain about getting ‘distracted’ or feeling ‘scattered’, but as far as I can tell, it’s NOTHING like what we experience. (I’m sure that there must be some NTs who have serious EF issues. I just don’t know any.) (I’m sure there must be autistics who don’t have EF problems either.)

How DO they do it? How does it feel to be like that? I have no idea. I look at them and know I can never be like them, live like them, and it adds to my already strong sense of alienation from the vast bulk of humanity. As if I needed anything to increase that.

And given my age, and how long I’ve been working on this, I don’t think it will ever be any different. The only thing I can do is to continue to work on self-management, and on self-acceptance. Not to mention throwing off the judgements of others.

Because the judgements we place on ourselves are hard enough to shake off. We really don’t need more of that, from people who just don’t understand, as it only makes our lives even harder, and doesn’t solve ANY of our problems.

Friday 1 December 2017

Things I Don't Understand - Conspiracy Theories

I don’t understand conspiracy theories. Or, rather, I don’t understand the people who believe in them, the theorists themselves. No matter what explanations the psych types come up with (and there are many hypotheses), none of them really explain why people are so willing to ignore common sense to believe in them.

To make myself clearer, let me define what a conspiracy theory generally consists of, according to the experts. Michael Barkun, a political scientist, defines a conspiracy theory as the belief in a “secret plot by exceptionally powerful and cunning conspirators to achieve a malevolent end.”[i] It typically has three elements in it, namely –

1) They “appear [and I stress ‘appear’] to make sense out of a world that is otherwise confusing.”

2) They claim the world is divided “between the forces of light, and the forces of darkness… [tracing] all evil back to a single source, the conspirators and their agents.”

3)  They claim that only they “know the truth”, having unmasked the “plotters' deceptions”, unlike the “brainwashed herd” of the masses.

I would also add that most conspiracy theories seem to point the finger at ‘The Government’, especially the US one, and/or its agencies. None of them ever seem to adequately explain WHY government is supposedly doing these things. It just seems to be assumed that it’s corrupt and evil, full stop. And that they are the only ones who are ‘in the know’, so of course the government wants to silence them… Basically then, conspiracy theories are all just more sophisticated versions of “the gubmint’s out ta getcha”, and/or “we know something you don’t, nah, nah, nyah, nah…” 

Some conspiracy theories are pretty harmless. We can laugh at the flat-earthers, roll our eyes at chemtrail believers, and shake our heads at the Roswell crowd. But others are not so easily shrugged away. Holocaust deniers, for instance, must cause a lot of hurt to Jews everywhere. And more recently, parents of children killed in the Sandy Hook shooting have been subjected to incredible verbal abuse and vitriol by those who claim the whole event was ‘faked’, that their children didn’t exist, and that the parents are liars, paid by those with an anti-gun agenda, etc. The pain this must cause those who have lost loved ones I can only imagine.

And then there’s the anti-vaccine crowd. I think they must win some kind of award for the most harmful conspiracy theory on the planet. Thanks to them, diseases once made nearly extinct or rare by high vaccination rates have returned, with devastating consequences. People have become extremely ill and even died as a result, or sustained horrible and sometimes life-long damage, with many others left in a vulnerable state, but they shrug all this off. 

Government, along with the medical establishment, they shrill, have conspired to conceal the ‘terrible harm’ that vaccines do. To believe this, they must ignore all of the evidence presented by history, statistics, the entire mainstream scientific consensus, and simple logic, and instead resort to chanting the mantra of “but toxinz… but Big Pharma…but gubmint…” (And I’m not even going to start on the whole ‘vaccines cause autism’ garbage. Suffice to say it makes even less sense than the rest of their crap, especially since Wakefield’s been thoroughly discredited.) Like other conspiracy theorists, they believe that they have somehow uncovered ‘truths’ denied to the majority of the populace.

But does any of this really make sense? Can we really be the victims of a (or any) horrendous plot/s by governments, doctors, etc?

Think on it. Just think on it, for a moment. We’re a social species. On the whole, we do not keep secrets well. We blab. We tell a friend “in strictest confidence of course”. We get drunk, and boast to the bartender, or the person next to us. We pillow talk, we gossip and chatter, natter and prattle and “have you heard……!” Even things that governments try to keep hidden, from Watergate to Abu Ghraib, have a way of working their way out of the woodwork in the end. The only secrets that seem to be (more or less) kept are those belonging to those who are disinclined by temperament to blab (e.g. spies). And such people are a rare breed.

So the idea that hundreds of thousands, millions even, of doctors, nurses, hospital administrators, politicians (an exceptionally gabby species), civil servants, other health care workers, scientists and all their ancillaries, over a very long period of time, and through umpteen changes of governments, in dozens of different countries, are all in on some giant conspiracy to - what? Get people sick, for some strange and evil end of their own? – is patently absurd. It assumes, and sometimes anti-vaxxers even outright assert, that ALL of the above professionals are either a) deluded, b) lying, or c) incompetent to recognise a health issue when it presents itself, despite all their years of training and practise and research… Plus know how to keep their mouths shut about it.

All of them. 

All the time. 


…Yeah right.

But then logic doesn’t seem to be a strong point of any conspiracy theorist. Over the last few years, I’ve watched the hardcore anti-vax crowd repeatedly and consistently do the following – 

- present weak, incoherent, illogical or contradictory arguments

- have a poor understanding of basic science, and refuse to listen to those who have a better one

- think Google searches means that they know as much as doctors and scientists who have studied and practised for years

- scorn anyone who defends vaccines as ‘sheeple’ or ‘paid shills’ for ‘Big Pharma’, but swallow unquestioningly anything that comes from other anti-vaxxers, even when they make wildly inflamed claims, have no professional expertise in vaccines, and are pushing bizarre (and expensive) ‘cures’

 - blame vaccines for pretty much ALL human illnesses and even social problems there are, regardless of the weight of evidence that proves otherwise

- when asked to provide proof for what they allege, ALWAYS link to at least one of the following – 

                1) Reports describing shonky ‘science’, which has either been already discredited/withdrawn/redacted, or can be easily demonstrated as bad or pseudo-science;

                 2) Other anti-vax websites, who seem to be competing, in a sort of endless circle-jerk, as to who can produce the most outrageous allegations;

                3) Articles and reports that don’t actually say what the headlines and/or the anti-vaxxer are screaming – it seems that anti-vaxxers often don’t read beyond the headlines, just grabbing links off AV websites that they think ‘prove’ something.

- most especially, they ‘shift the goalposts’ – as fast you tear down one of their arguments, they switch to another. Mercury has been disproven? Oh, it must be the aluminium. Or the formaldehyde. Or green monkey cells, or aborted foetuses, or this, or that, or something else. On and on….

In short, they display an appalling lack of basic common sense, and often seem to verge on outright hysteria, and yet present a very real danger.

And I just don’t understand them. Or any other conspiracy theory, for that matter. I don’t understand why anyone would swallow such crap, how on earth anyone with an ounce of common sense can subscribe to them. It just baffles me. Yes, the world is a chaotic mess, but conspiracy theories that try to ‘explain’ it by positing some simple division between good and evil, with them as the ‘angels’, and governments, along with anyone who opposes them, as the ‘devils’, just don’t wash. Saner, you’d think, to just accept that there are no handy explanations, that the world is just totally screwed up. But sanity doesn’t seem a strong point of any conspiracy theorist either.

And after pondering all this, I’m still left with the question - is it because I’m autistic, that I can’t grasp why anyone would embrace the totally illogical, just to make themselves feel important and ‘in the know’? Are their egos really that big? Or is there something else I’m missing? I just…. don’t get it.

[i] This, and all subsequent quotes, are from the Wikipedia entry on ‘Types of Conspiracy Theory’.