Sunday, 11 February 2018

My review of 'THAT BOOK'



I’ve been trying for ages to write a review of THAT book. You know - ‘To Siri, with Love’. (I got it from the library, because not of all of us can afford to go out and buy new books, and anyway, why should I put money in her coffers?) Others have written theirs ages ago, but I’ve struggled with even reading it, picking it up and putting it down numerous times.

It’s not because it’s badly written that I’ve struggled so much with it. In fact, it’s fairly well-written, chatting away about her life and her sons, with that kind of wry, slightly self-deprecating humour which is always engaging. And she clearly loves her autistic son deeply, and he loves her too. He seems a loving, gentle, caring soul, and it’s great that she’s done what she can to nurture that. Also, she is in synch with us on at least some points, for instance (p 53) on stimming. (See, I’m trying to be fair.)

But. Sigh. I started to read - and the first sentence on the very first page, in the Author’s Note, says – “These days, it’s considered politically incorrect to call a person autistic.” Um… does she even realise that autistics themselves prefer ‘autistic’? Was she even aware of the existence of an adult autistic community, when she wrote that part? (If she wasn’t, I’m sure she is now!)

 A few pages later (p7), she utters what is really the defining sentence of the book. “Every person with ASD I’ve ever met has some deficit in their theory of mind.” Read that again – EVERY person with ASD. Someone has already written an excellent analysis of this, so I only want to say this – Theory of Mind (TOM), as a hypothesis, in my opinion, has more holes in it than a block of Swiss cheese. But even if it were true (and it’s a big if) – she’s forgotten one thing.

WE GROW UP.

The classic TOM tests are done on children. I don’t know a single adult autistic, no matter where they are on the spectrum, who lacks self-awareness, and who isn’t perfectly well aware that other people have different thoughts, feelings and opinions. We may have great difficulty in working out what those thoughts etc are, but we do know they have them. And, despite what she seems to think, I don’t think our difficulties with reading NTs (p 66) is a sign of TOM.

I soldiered on. Yes, all the horrible things others have quoted are there, and just as offensive in context as out of it. She asks, for instance (p 121), “how do you say ‘I’m sterilizing my son’ without sounding like a eugenicist?” Short answer – you can’t. And no amount of waffling on about the history of eugenics, or how there’s a “good success rate in vasectomy reversals”, just in case she ever changes her mind, will alter that. It isn’t even the issue.

The issue here is that IT’S HIS BODY. Not hers. His. It’s HIS right to decide whether or not he ever wants sex, wants to be a father, wants to have a vasectomy. Not hers. Got that, Ms Newman? And as for the ‘Benny Hill soundtrack’ comment, I’m old enough to remember Benny Hill, and frankly, I find it both revolting and mystifying to associate him in any way with that sweet boy.

I’m not going to dissect the book chapter by chapter – someone has already done that, way better than I could. My concern is rather with the underlying message of the entire book. Because despite her sometimes using adult autistics as a resource, her attitude to autistics in general is, well, troubling. I finally realised she really and truly feels, deep down, that being autistic is an inferior state, that to her we are a lesser breed of human. Even her attitude towards her own son seems rather like what you might have towards a beloved but somewhat less-than-perfect pet.

An example of this is when she compares her two son’s conversations with their friends. Her NT son’s conversation, riddled with smug one-upmanship, is somehow ‘better’ than gentle autistic Gus’s more straightforward communication (pgs 163-164), because it’s more ‘normal’, more ‘what friends are supposed to be about’. (Says who? Is there some rule book somewhere?) Or it’s more ‘proof’ of our lack of TOM. And on it goes. If autistic ways differ from NT, they’re bad, or lesser, or just wrong, or signs of a ‘deficiency’ in us… you get the picture, and I’m sure you’ve heard it all before.

There’s also her comments on autistic students at Cambridge objecting to Baron-Cohen’s suggestion that there will soon be a prenatal test for autism. While she allows that it’s okay to ‘not be normal’ (how kind of her!), she also says (p 213) “If you are on the spectrum and you’re at one of the finest universities in the world, you cannot speak for the person alone in a room, forever spinning the bright shiny object.” Translation: “you’re too high-functioning to understand/speak for the ‘really’ autistic”. I’ve already expressed my feelings about that sort of attitude here and here. Suffice to say that this kind of talk is both perpetuating a false division and unhelpful to all autistics. (Are you now understanding why it took me so long to read this book? It was all I could do to not repeatedly throw it across the room.)
And then there’s the issue of how she’s reacted to autistic objections to the book. Firstly, she seemed startled, saying that she hadn’t written it for autistics (imagine if a white woman wrote a book about raising a black child, then, when black people objected to her racism, said that she ‘hadn’t written it for black people to read’. Imagine the furore.) She’s followed this up with working systematically to silence our voices, even making pitying, denigrating comments about how our reactions are somehow ‘proof’ of that ‘lack of TOM’. Or perhaps, Ms Newman, we understand perfectly well when we’re being insulted and silenced, and quite naturally object to it.

The irony of us using the self-awareness and awareness of ‘different minds’ that we’re not supposed to have, in order to protest her state of mind, is not lost on me. It seems to be lost on her though – she seems unable to understand our states of mind, our opinions and feelings, how hurt we feel, how pushed out into the cold, how dehumanised, yet again.

This book is a strange mixture of awareness, confusion, misunderstanding, and sort-of-acceptance mixed with subconscious prejudice. It’s absolutely riddled with ableism. Despite being entertaining, despite it no doubt appealing to the ‘autism mommy’ crowd, it won’t make our lives any better. I doubt it will even make the lives of our parents any better, except perhaps in a “confirmation bias” kind of way.

The list of those who have done the autistic community a disservice is, alas, a long one. Ultimately, and sadly, Ms Newman has just been added to that list.

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.

ENOUGH.

NOW.

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.