Waiting for the Second Wave

We’ve got all these covid-safe procedures at work, and this week I managed to forget to comply with them twice.

This was in no way deliberate, please understand, I’m totally in favour of keeping us all as safe as we can from the virus and willing to do my part. It’s more that I just haven’t been thinking about covid – and not because I’m unaware either, but as a defense mechanism for my sanity. Because thinking about it really gets to me.

Why? Mainly because they’re in the middle of a second wave down in Victoria, worse than the first. But also because I can see second waves starting in Hong Kong and Japan. In our neighbour Indonesia it’s raging out of control, with over a thousand new cases daily – plus they’re threatening to send all the Aussies home from Bali. So while here in Queensland we’ve been sitting for weeks on an incredible ZERO new cases in the whole state, how can that possibly be maintained, when it really only takes one infected person in the wrong place? And there’s nothing you or I can do about it, all we can do is wait and see. (And learn how to make face-masks).

So I feel like I’m in limbo, just hanging in there, trying not to think about it too much and let it get to me, while at the same time reminding myself not to get complacent and to keep following the procedures.

Hope everyone else is hanging in there too. Stay safe.

 

The Perils of Groupthink and Enforced Isolation

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.

Consider this:

  • Some amongst those in enforced quarantine may require medication but have no way to get their prescription filled.
  • Some of them may be carers for others, and by keeping them locked up we may be indirectly creating a situation of neglect for those they would otherwise be caring for.
  • Some of them may have mental health issues, which are likely to take a severe downturn in solitary confinement, leading to spikes in anxiety, depression, panic attacks, or worse.

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:

  • We should not be isolating people without their consent. (And I’m sure most will consent, if provided with enough information, delivered with trust and respect).
  • We should be listening to the quarantees concerns about the situation, and following up to make sure they and their dependants have all they need to maintain good health, according to their individual needs.
  • Finally, and most importantly, no-one suffering a mental health condition should be placed in solitary isolation, under any circumstances. Please don’t do that.

In summary, here’s my message on enforced quarantine and isolation: Stop. Think. Proceed – with great care.

 

 

 

 

 

 

 

 

 

 

Books with Bad Covers

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?

Exclusion

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?

In Conclusion

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.

A Tale of Two Rosies

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.

Fictional Rosie:

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.

What Happened?

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.

https://www.ted.com/talks/jackson_katz_violence_against_women_it_s_a_men_s_issue?language=en

 

Failing the Acceptance Test

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…?

  • Accept that, however late you came to the realisation of your AS, and however great the differences you see between yourself and others with the same diagnosis, however ‘normal’ you consider yourself, there was no mistake. Let’s face it, you would never have sought a diagnosis if AS hadn’t been causing you a whole heap of trouble. It’s impossible to ignore something that has fucked up affected your life so comprehensively.
  • Accept that, while AS might not get worse over time, your ability to deal with it (work around it, compensate for it, and generally pretend it does not exist) has been heading downhill for years. Will probably continue on this trajectory. Pleasant thought, right? In trying to live your life the way you want, regardless of your AS, you’ve bargained away your mental health – and it’s not worth it.
  • Accept your limitations. Which is so much easier said than done when your limitations seem so elastic, and you remember stretching them in the past. This means deliberately not doing things you want to do, know how to do, have successfully done in the past, because there’s going to be a backlash. It means accepting you have a disability. Because however much you want to get out there and live your life entirely on your own terms, you know what’s going to happen when you try and it’s not worth it.
  • Accept that you’re going to have to get smarter about managing the condition. This means planning ahead and forecasting which situations might be difficult. It means accepting the need to tell people enough to get their help in overcoming hurdles, or taking them down. Because (have you accepted it yet?) you have a disability. The alternative is to avoid difficult activities entirely, and be seen as lazy, irresponsible, antisocial, self-absorbed, incapable, unreliable.
  • Accept that other people are not going to understand (however much you try to explain). It’s impossible for them to comprehend how something so basic and obvious (for them) can be so confusing or overwhelming or traumatic (for you). And when you push beyond your limits and they want to know why you’re ill, you’ll have to keep on calling it depression, or an anxiety disorder, or a stress disorder, or whatever seems to fit in the moment. Officially, autistic burn-out does not exist.

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.