I’m still here.
Working through my frustration with current limitations. (No, I’m not talking about the pandemic).
And also, the washing up.
I’m still here.
Working through my frustration with current limitations. (No, I’m not talking about the pandemic).
And also, the washing up.
I’ve got a bit of a soft spot for propaganda posters in the old Russian communist style. You know, the ones with a group of hale and hearty workers gazing intently into the rising sun with fists raised in determination. Whatever you may think of communist regimes, don’t such images stir something within you, a delight in the striving towards a common goal, the harnessing of people power?
This week something similar stirred within me, as our PM thanked us all for doing our parts to flatten the curve of this pandemic. “We’re all in this together”, was his message. After two weeks of suffering the flu, at an extremely bad time to be suffering the flu, it was something I desperately needed to hear. Just those few words changed my outlook, allowing acceptance of the uncertainty and fear of recent times, with the understanding that we are all going to help each other get through this.
Bring on the social distancing, the closure of beaches, the self-isolation. I can face it because we’re all in the same boat. Together, we can do this.
Here we are, collectively working so hard to do the right thing, isn’t it infuriating when a few break the rules, developed for the common good? How dare those people go out and have fun? Let’s start fining them. And how dare returning travellers go home instead of quarantining themselves on entry to the country? Don’t they care that they may be spreading the virus around? Much better to bus them to hotels and get the police to enforce quarantine. Now they complain, while being put up in 5-star hotels at the public expense? How dare they?
No, wait. Stop. Think.
The danger of groupthink is that in the strength of our collective determination we can be so sure we are doing the right thing, we don’t even allow dissenting opinions a voice. We start to see things in black and white “you’re either with us or against us” and neglect the nuances of a situation. We have no patience for people who don’t abide by our rules, so we send in the police to enforce them. Police who who exist in a rigid hierarchy, and are expected to dutifully uphold the law according to the instructions of their superiors. If they’re told “keep these people inside their rooms”, that is what they are going to do, without question.
Now here’s the thing about isolation. Depending on your state of mind, and your individual needs, it can be a pleasant rest with unlimited movies and free food, or it can be torture. I really mean that: torture. Isolation from other people and from nature, especially if enforced against one’s will, can do horrible things to the mind. I don’t know about real life prisons, but in the movies, the isolation ward is where they send the troublemakers to punish them, or to break their spirit.
Don’t get me wrong, I’m not against the latest efforts to flatten the curve – far from it, I’m supportive of placing arrivals from overseas in quarantine, in general. It’s what we have to do. I just think we need to be really careful with how we go about it, if we’re not going to cause suffering to a few susceptible individuals. Do we want to inadvertently create a situation of human rights abuse?
Here are my suggestions as to what “being really careful” means:
In summary, here’s my message on enforced quarantine and isolation: Stop. Think. Proceed – with great care.
Well, I’m not sure whether to keep up this blog or not, since it was intended as a writer’s blog and then I completely stopped writing. Anyway, a friend suggested I write another post on aspergers/autism while I figure out what I’m doing, so here it is. My topic for today is… drum roll… the changes to how you are treated after disclosing your autism spectrum condition.
I’m going to try and keep this pretty short, to avoid it turning into a rant, and because I’m ill with the flu (or similar) and really ought to be in bed. There’s no reason why it should be a rant, really, because on the whole I’ve had nothing to complain about in the way I’ve been treated post-diagnosis. Actually let me stress that: my experience has generally been positive.
The reason for this post then is more about supporting those autists who fear the reaction to disclosure, or who’ve had bad experiences – and hopefully to open the eyes of those intolerant folks who create this situation by their lack of understanding and consideration.
So, here are some of the negative reactions we can and do receive, once people are aware we’re on the spectrum:
No – wait – we need a foreword. I imagine there may be readers for whom the realities of AS which have been ground into our souls may not, in fact, be at all obvious. So…. in essence, the issue is that we spectrumites tend not to come across as being particularly warm and likeable people. In writing we might be OK, but in person and in speech we (typically) don’t present a good impression. Hence, we are always at a disadvantage compared to others in social situations. Always. Bearing that in mind, let’s proceed to negative reaction no. 1:
Invalidation of our opinions
Because we don’t express them at the right time, or in the right way, or to the right person.
The classic (and devastating) example is when there’s a major project on at work, with flaws in its implementation. Guess who, with the best of intentions, will stand up in the group meeting and point out all the ways in which the project cannot succeed? Guess who then finds themselves kicked out of the team, or even out of their job? (No matter that 6 months down the track, they may be proven right by failure of the project – or the quiet implementation of their recommendations to save it).
But there’s a less spectacular, more insidious type of invalidation that happens as well. There’ll be someone who just doesn’t like us, or feels threatened by us (why?!?). Once your diagnosis is out, it’s easier for them to discredit anything you say. Behind your back, friends and colleagues are being told: “Ignore what Kay said, she doesn’t understand. She has Aspergers; she doesn’t get it.” And suddenly you have no voice, no opinion deserving of consideration.
So tell me: Is it really the autist who lacks understanding here?
Discounting our emotions
Because our inner feelings are judged by our outward behaviour.
I can’t speak for others on this, but personally my biggest emotions are on a time delay – I can be told of someone’s misfortune, and two days later feel completely devastated. Yet society imposes on us the requirement to respond appropriately in the moment. Argh. Heaven forbid one should be caught smiling at such news. People see us going through the motions – trying to fake the right reaction – and assume we have no feelings, hence the “lack of empathy” thing.
In fact, my emotions are extreme – they go from zero to ten with nothing in between. It’s overwhelming, to be honest. In an emotive situation I may freeze or run away to prevent a freak-out. So I’m standing there frozen and displaying no emotion whatsoever, and people may assume I feel nothing. Or maybe two days later I can finally recognise and voice my emotion, and need to talk it through, only to be told I should be over it and to stop making a fuss?
Who is it that really lacks empathy here?
Because we say or do the wrong thing.
Social skills training is the treatment of the moment for youngsters with Aspergers, which is understandable. I got the opportunity to learn social skills, too, in a way (it’s called life). And yes, you can improve a little, with practice, but it’s a bit like trying to install software on the wrong operating system. AS is not a social condition, or even behavioural (even if that’s how it’s diagnosed), it’s neurological; we’re just wired differently.
The problem comes when people make assumptions and judgement. When we forget to greet someone we might be considered rude, when we don’t join the conversation we’re unfriendly, when we join the conversation at the wrong moment we’re disrespectful, when we say something inappropriate we’re thoughtless… I could go on, but you get the picture. You’d think it would be easier with a diagnosis, but I’m not sure it is. Without a diagnosis, we’re weird; with a diagnosis, we’re not trying hard enough.
What happens is that our friends and colleagues stop talking to us, or their manner towards us changes, becoming distant or cold. They don’t tell us why. If we press them to find out what we did to so deeply offend them we might be told “you ought to know”. Which, if you think about it, is a bit like telling the blind person who trod on your foot to watch where they’re going.
Tell me, is it the autist who has the communication problem here?
I don’t believe the above behaviours towards people with AS are uncommon, I think they’re happening every day, all around the world. Maybe they seem like small, inconsequential things taken individually, but for those on the receiving end, they can add up to serious problems.
There’s a word which used to have the innocuous meaning: “the ability to recognise the difference between two or more things, especially the difference in their quality”. Yes, I’m talking about discrimination. Unfortunately for those of us on the spectrum, our behavioural and communication differences mark us out.
We are the books with bad covers.
So, a trigger warning, this post is going to talk about domestic violence. In fact, the reason for this post is that I’ve been badly triggered by something in the news this last week, involving domestic violence at its most tragic, and I feel like I need to talk about it. It was an event so very horrifying I’m not even going to approach it directly. Instead, I’m going to tell you the tale of two Rosies.
Last year I wrote a brief review on Goodreads of a book called ‘The Rosie Result’ by Graeme Simsion. Let’s just say, I didn’t find it quite as delightful as others did, for personal reasons. Here’s an extract of my review:
“This book has got me in a bit of a funk… because everything works out for the characters in a way that doesn’t happen in real life. The way Don and Hudson use their social circle to help solve their problems makes me feel inadequate for being unable to do that.
Plus knowing that people are going to see the book as a comedy and I don’t think NTs are going to recognise – despite being quite blatantly told in the story – that the comedic aspects of Don are not really funny at all – to him. If anything they’re kind of traumatic, and this is what we have to deal with all the time.
And then he left Allanna with her abuser, which is the one thing that tallies with real life. To which I say f**k that 😦
I don’t want to diss the book or the author – who’s absolutely brilliant imho – just putting out there the way it made me feel.”
The part in bold is the part I’m concerned with in this post. In the story, you see, the protagonist becomes aware that Allanna (the mother of his son’s friend) is being violently abused by her partner. And what does he do about it? Nothing. That’s right, absolutely nothing.
OK yes, he does speak to the woman about it. She makes excuses for her abuser and expresses no desperation to leave the relationship, so… that’s all OK then.
Is it? Really?
The Real Rosie:
Rosie Batty has been an outstanding campaigner against domestic violence, ever since her son became another horrifying statistic. This incredibly brave woman has brought domestic violence to the forefront of public discourse in Australia.
Here is an edited quote from the book “See What You Made Me Do” by Jess Hill:
“For the first time in history we have summoned the courage to confront domestic abuse. This has been a radical shift, and in years to come, 2014 will likely stand as the year the Western world finally started taking men’s violence against women seriously. But nowhere did an entire population wake up to it like Australia did on February 12 that year.
On that day, Australians watched a solitary woman, raw with grief, look downwards and skywards and out across a clutch of reporters who’d barely hoped for a statement. An ordinary woman standing in a middle-class Australian street talking about the public murder of her eleven-year-old son at the hands of his father…
After surviving and leaving Greg’s violence, she had warned for years that he was dangerous, unpredictable, and a risk to her son. In courts and police stations her warnings had been minimized, dismissed, believed, acted on and then lost in the system, just like those of countless victims before her…
‘If anything comes out of this, I want it to be a lesson to everybody,’ said Rosie Batty on the street that day. ‘Family violence happens to everybody, no matter how nice your house is, how intelligent you are. It happens to everyone and anyone.’”
As you can tell from the tone of the book, we thought things were going to change, back then. Certainly they started to change.
In 2015, for example, Rosie Batty was awarded Australian of the Year, and in 2019 she was appointed an Officer of the Order of Australia in recognition of her advocacy for the prevention of family violence. The government department in which I work established a new type of compassionate leave for victims of abuse, and a program of awareness was instigated, linked to the White Ribbon charity, whose purpose was to engage men to make women’s safety a man’s issue too.
Societal change is not easy, is it? It seems like the more the issue was raised, the more backlash it attracted. There was a famous comment from union leader John Setka in June 2019, that Rosie Batty’s campaign had “reduced men’s rights”. It took four months and the revelation of the man’s own verbally abusive behaviour to remove him from his leadership role. There was the recent folding of the White Ribbon charity. And now, six years later in February 2020, the unthinkable has happened again.
Out come all the same comments as though we’ve learned nothing. There’s the labelling of the perpetrator in the press as an ‘evil monster’, without recognition of the capacity for violence within us all. And at the other extreme, there’s the statement by the police that they need to keep an open mind and consider what could have pushed the perpetrator to this extreme – as though there could be any excuse for the murder of women and children? And everyone shakes their heads and wonders how this could possibly have happened.
You know what’s really tough? It’s that the only way to function in society is by trusting in the people around us and especially those in authority. We need to know that they understand the issues and have a plan to address them. To see our political leaders and police so clueless is painful.
It’s not like there aren’t studies. We know the character traits to watch out for: the deep insecurities which lead to possessive or controlling behavior; the manhood ideal that leads to denial of mental issues and the re-packaging of insecurity and fear into anger and rage; the lack of self-awareness or responsibility for their own behavior that sees blame for all woes placed firmly on the victim. We know that the perpetrator can seem perfectly normal, even charming.
If we stop to think about it, we might also recognize that those who abuse others are never going to accept behavioural correction from representatives of the ones they abuse. To be specific, in the case of men who abuse women, the only people with the power to correct the abusive men’s behavior are other men.
We are powerless to address domestic abuse until everyone in society takes a zero tolerance approach to the expression of abusive speech or behaviour. And we desperately need men to take the lead on this, and to accept that domestic violence is, predominantly, a men’s issue.
Not sure if I have any male readers, but I can imagine their hackles rising at this point. Please, guys, this isn’t about man-blaming or gender power-games, this is about needing your full engagement, for all our sakes. Over ninety percent of murder-suicides are committed by men – and only men truly have the power to intervene. Think about it.
Hopefully this link will work – I leave you with this TED talk from Jackson Katz, which says it far better than I ever could.
I’ve been reminded recently of what we all ate when I was a teenager and young adult in the eighties and nineties. Do you remember?
We were the generation who were inculcated with a fear of fat – and especially that evil menace called saturated fat. In our pursuit of a healthy diet, we put fat-free dressing on our salads and sunflower margarine on our reduced-fat cheese sandwiches. We swapped breakfast eggs for packaged cereals, or processed concoctions such as “pop tarts” (a toastable biscuit with 35% sugar). We religiously counted our Calories.
We were also the generation who saw an explosive increase in processed foods. Mashed potato was replaced by instant “smash”, made from dehydrated potato flakes, and gravy became hydrolysed vegetable protein. Whole fruit was replaced by cartons of reconstituted juice. Ice cream (once made from cream and sugar) became a concoction of skimmed milk powders, vegetable fats, stabilisers, emulsifiers, artificial colours and flavours. We obtained our protein from nitrite-preserved bacon, frozen meat patties and orange-crumbed fish fingers.
Do you remember attending aerobics classes, decked out in sweatbands and fluorescent leg-warmers like the kids from Fame? And attempting to work out exactly how many Calories one had worked off, and whether we could allow ourselves a coke? Or were you trying to cut down on sugar and going with the Diet variety?
I’ve been reminded of all this while reading “The Obesity Code” by Jason Fung, a fascinating book which comprehensively sets out the state of current knowledge on the causes of obesity – and how completely, horrifically, wrong we were.
Turns out it wasn’t the fat that was making us fat. Apparently it’s raised insulin levels that are to blame, and what causes raised insulin levels? You guessed it, all the refined carbs and sugars in the highly processed junk we’d been conned into thinking was healthy. And no, the massive fructose hits in our fruit juices weren’t doing us any good either.
Oh yeah, and there’s some new stuff in this book, too. If you’re thinking to go on the paleo diet, or keto, it turns out animal proteins (thought to be low GI and hence healthy) cause insulin secretion too. As do artificial sweeteners.
Perhaps the most important (and neglected) piece of wisdom in this book is this: it is not only what we eat that is important, but when. If we snack between meals, we are creating constant insulin hits and not allowing our bodies to cycle into a low insulin state.
Apparently, if we want to lose some fat, the best way is to periodically fast. By eating normally some days and fasting on others we avoid the fall in metabolic rate which scupper our efforts at dieting by a daily reduction in calories.
So yeah, it seems we should have been listening to the advice of our parents, grandparents, and great-grandparents to the nth degree. Cut down on sugar, eat whole, natural foods (none of this processed junk) and a moderate amount of (full fat) animal produce. Don’t snack between meals and follow feasting with fasting.
And here’s the thing which I can’t quite get my head around, as a member of my generation:
We are allowed to eat butter (and lard and dripping), the crispy chicken skin and the pork crackling.
Yes, really, I kid you not. Go on, I dare you…
I really enjoyed this.
The author has taken the state of current understanding of human evolution, of world history and of major religions, together with the basics of capitalism and the scientific revolution, and drawn it all together into a single history of our species.
And it’s so readable! Not repetitive or bogged down with excessive footnotes and references – just packed with insight into why the world has become what it is today.
A fascinating and remarkable book, I wish I’d picked it up sooner.
Yeah, I haven’t been blogging. To tell the truth my mental health hasn’t been the best recently. Which makes it hard to be interested in anything much, except trying to work out why, and what to do about it. I resent how introspective that makes me, how self-absorbed, but that seems to be the nature of the beast. Besides, how else do you battle an invisible monster but by throwing a bucket of paint over it? So everything (and everybody) gets shoved off to the side, just to find enough headspace to function at a basic level, and work out what else I can try.
One thing that’s become apparent (and I think it’s worth exploring enough to write it down) is that for all I’ve said about autism acceptance, I haven’t truly accepted my own. And therein lies the problem. Let me explain…
It was a field course for work that finally opened my eyes to the connection between AS and my mental health issues – stretching myself too far to overcome the one plainly and directly resulted in the other. It was a painful sort of Eureka moment. So here was the answer, the reason for my struggles: the strategy of pushing through autism issues and striving to do the same as everyone else, which might have worked OK when I was younger, is simply not working for me anymore. It’s making me ill. I can’t keep doing that to myself.
But. But. But.
You see, now I have a problem.
If I’m correct, the only way to maintain good mental health is going to be acceptance of some very uncomfortable truths. Not truths I want to take on board at all. When you read the below, humour me and try putting yourself in my shoes. How would you feel if you were forced to…?
I never know quite how my posts come across, but if you’re getting an angry vibe from this, you’re spot on. Being forced to face up to the above points is seriously pissing me off; it’s not something I ever thought I’d have to do, and I resent being pushed to this point. In modern parlance, it sucks big time.
So yes, I’m all for autism acceptance in general, and I’d surely accept the condition well enough in others. It’s just when things get personal that I fail the acceptance test.
Brought home this today:
I’m told she’s a cross between an English sheepdog and a Southern Chinese Shar Pei, which is weirdly appropriate.
“Tendency to be stubborn and wilful, might not get on well with other dogs.”
Oh boy. Like I needed another one…