MY AUTISTIC REACTION TO THE PANDEMIC

You’d have to be living in a cave in some remote spot not to know that we’re in the midst of a worldwide pandemic. There’s really no other news on TV, or my Facebook newsfeed for that matter – except the deliberate light relief kind, like cat videos or music from European balconies.

I’ve felt a wide range of emotions in response to this. A ton of sad ones - compassion for those who are or have been sick, grief for those who have died, and empathy for those who have lost loved ones. Empathy also for those who know that they or their loved ones are at risk, those who are struggling to cope, those whose anxiety is going through the roof, those who find the whole thing just too overwhelming. I’ve sometimes found myself sitting on the couch crying, for instance when my country experienced its first Covid#19 death. I didn’t know the person, or anyone who’s died anywhere, but I cried anyway.

And anger. I’m furious at the hoarders and panic buyers who’ve emptied the supermarket shelves, depriving those of us who can’t afford to do this of things we need. Seriously? Who needs three hundred toilet rolls anyway? I’m especially angry though at the profiteers. How dare you. How dare you make money on the backs of people’s pain, misery and deaths. What kind of amoral pipsqueak are you? And then there are the callous and the don’t-care-I’m-all-right-Jack crowd, who put everyone else at risk. This is not a time for partying, people!

I’m also angry at those so-called leaders who haven’t acted fast enough, and have put more people’s lives at risk as a result. My (admittedly rough) impression is that ‘left-wing’ governments, at least in Western countries, seem to be acting faster and doing more to help ordinary people, whereas right-wing leaders have tried to delay acting, or even reverse some actions too soon, in order to minimise damage to the Holy Grail of ‘The Economy’. The inadequate measures of some governments sometimes seem akin to telling the Titanic’s orchestra to play on as the boat is sinking. I’ve wanted to grab them all by their collars and shake some sense into them.

But my strongest feeling is simply fear. It’s not myself I fear for, but relatives and friends, especially those who are in the ‘high risk’ category. Will they get sick? Will anyone I know die? I fear for my loved ones, especially a close relative who is pregnant with a much-wanted and longed-for baby, as well as my more elderly relatives. Plus no-one knows how long this pandemic will last, will it be over in a few months, or by Christmas? Will we acquire herd immunity, or will the virus mutate again? Will there be further pandemics? When will there be a vaccine? How much should I be scared?

Because nobody knows what the future will hold, even if we beat this thing. Maybe the world will only change in small ways – elbow bumping replacing high-fives, or a shift to more people working at home. Everyone becoming more scrupulous about washing hands. (I can’t help wondering what you were all doing before?!?) Or maybe we’ll become a more scared world, like we did after 9/11, with ‘viral’ becoming a personal insult and cause for social rejection. One big possibility is that we’ll become more callous about allowing the vulnerable – the elderly, disabled, chronically ill and homeless – to be sacrificed in order to ‘manage’ future crises. And many of us autistic and disabled know that we will be among the culled. These are just some of the possibilities.

Alternatively, we could have some kind of social revolution, a shaking up of the world’s complacency. This crisis has made the defects of neo-liberalist capitalism patently obvious. The modern practise of ‘just-in-time’ supply-chains, for instance, with few or no reserves, doesn’t work in a crisis. The profit-at-all-costs mentality and ‘lean, mean’ health services have left many at risk. The crisis has also shown that the real ‘essential people’ of any society aren’t billionaires or politicians, but people like supermarket workers, truck drivers, and medical personnel. Perhaps people will look at our socio-economic system differently after this.

Now, I get that lots of people are having similar reactions and thoughts right now. We’re watching a horror unfolding before our very eyes. ‘Unprecedented’ is a media pop word right now – we’re all in uncharted territory. Feeling sad, angry, frightened and/or overwhelmed is an entirely appropriate set of responses to a pandemic. ‘Quiet terror’, as one commentator called it. There are so many unknowns it’s frightening. Even the scientists and doctors still don’t seem to know that much about how this virus works, and they and governments all around the world are playing catch-up, with fatal consequences. It’s already being said that mental health is going to take a big hit from this.

But I do wonder if it’s going to be even harder for us autistics, not so much because of social isolation (this will vary from one autistic to another), but because of all the uncertainty. My own feeling is that we’re less resilient emotionally, and may take it harder, and come back slower, if at all. I know that a large chunk of my own sense of security has been removed, and I don’t think it will ever return. I already have a very low level of trust in the world, due to my experiences, now I have a new mistrust of Mother Nature as well.

A big part of our trauma is surely going to be how so many of the ‘normal’ things in our lives are either gone or in abeyance. I didn’t realise till now how many of the world’s activities I simply took for granted, even if I didn’t like them much. Something as ordinary as going to the supermarket has become like taking a ticket in a lottery – I never know if what I need will be there or not. What will I go without this week? How will I cope? And of course as for many autistics, fear can lead to catastrophising, where I imagine the worst, and then double and triple it.

My own country moved pretty quickly, more than a week ago, into a complete lockdown, and while I was processing it all, I pretty much fell apart. I’ve done a lot of compulsive watching of TV news, eating junk food, irregular sleep, and much more stimming, while my dreams have been full of earthquakes, violent car accidents and wandering lost in strange places in the dark. It’s been an effort to get myself even a little bit together, to make healthy meals, get to bed earlier - and to do some of my much-neglected housework! I’ve had to cut down my hours of watching TV news, and stayed off Facebook until I felt able to cope with the onslaught.

Because I have a deeper level of fear, which I find hard to describe, but which seems to be a sense of the world fracturing right in front of my eyes. I’ve been floundering, grappling with this sensation of everything falling apart. I guess that’s what an international emergency does to you. An old W B Yeats poem keeps coming to mind, about how ‘the centre cannot hold’, and ‘anarchy is loosed upon the world’. (Yes, I know I’ve probably been reading too much dystopian sci-fi!) As a new order/reality takes shape, and I work out the new rules for it, I hope this fear might ease.

And for all we know, it won’t be like any of this. Maybe there’ll eventually be a vaccine, or life-saving treatments, and life will just go back to what it was. Or something like it. Maybe. Right now, I’m just trying to ride the wave, and take one day at a time. Nobody knows what’s going to happen next. And that’s the hardest thing for any autistic.

I'm So Tired Of Martyr Mommies

I’m tired of martyr mommies.

This year’s ‘Autism Awareness Month’ seems to have brought out even more of the breed, proliferating like rabbits on the Internet. Not that I go looking for them, you understand – I don’t need to, they pop up on Facebook with depressing regularity, and I see them because autistics or our non-autistic allies are up in arms about their latest communications, and rightly so.

Martyr Mommies are often of course ‘Warrior Moms’ on bad days. Warrior Moms (and sometimes Dads) are also everywhere on the Net. They’re the ones who sound like a cross between the worst autism-hating organisations and their own personal cheerleading squad for their kids. They’re all gung ho, rah-rah-rah, I love my kid to bits (but not their autism!), they’re my hero/darling/champion (but only of course for as long as they’re trying hard not to be or look autistic), my kid ‘loves’ their ABA (even when their own accounts suggest different), everything’s all hunky-dory (even when it’s obviously not), we’re ‘fighting the good fight’ every hour of the day (translation: poor kid never gets a break from ‘therapy’) and by gosh darn we’re winning! (Translation: we’ve managed to squash our kid into the non-autistic shape we want, no matter the cost to them.) 

But then they have a bad day, things don’t go according to The Big Plan, and so they jump on the Net again, woe is me, my kid has the autismz, they make my life so hard, the world hates me, it’s not fair, I ‘deserve’ a normal kid, etc, etc, etc… Completely self-pitying rants, all too obviously designed to gather sympathy and pats on the back. And they get them. In droves. People (few if any actually autistic of course) rush to tell them how ‘brave’ they are, how wonderful, how they totally support their efforts to squeeze the Big Bad Autism out of their precious darlings, and so on.

Three points about these communications strike me. Firstly, that they, or their supporters, often claim that they are ‘bravely telling it like it is’ about autism, as if what they’re saying is so rare. But – it isn’t. It really isn’t. These ‘brave’ messages from ‘Autism Land’ are everywhere, especially in Autism Awareness Month, perpetuating the worst kind of images about autism, and overriding what actual autistics are trying to tell the world. They get the attention, and we get drowned out.

Secondly, whenever autistics find these blogs, Facebook posts, videos, whatever, and protest the ideas in them, we almost always get an extremely negative reaction, from them and/or their supporters. It seems you’re either one of their sycophantic cheerleaders, or one of the Enemy. We’re called ‘haters’ and ‘horrible people’ and accused of ‘trying to make autism parents’ lives harder’, when in actuality we are trying to help, or at least trying to help their kid.

Which brings me to the third point – that their messages are always All About Me. My pain, my troubles, my hardship, me, me, me. Nothing about their kid, and what they’re suffering, and certainly there seems to be no consciousness that they might actually be making their child’s life worse. I sometimes wonder if they even register that their kid has feelings, or if they’re swallowed the autism-negative line that we don’t have any.

Don’t get me wrong - I get that it’s not easy. I get that parents of autistic kids get stares and hostility and stupid comments from the public. I get that it can be awful when your kid has a meltdown in the supermarket and you don’t know what to do, or that you spend a lot of your time making their food right, cleaning faeces off walls and floors, or trying to stop them eloping over the nearest wall. I also get that there’s not enough or the wrong kind of ‘help’ from the Powers That Be. I get that.

But – and here’s the thing – everything the parents find hard, IT’S TEN TIMES HARDER FOR THE KIDS. Because yes, even as kids, even if it doesn’t seem like it, we too are aware of the nasty looks and words, the hostility, the pity and the patronisation, the ‘autism as disease’ and other relentlessly negative messages about autism, how we’re a ‘burden’ on everyone, and so on. We understand far more than you think – even when we are non-verbal and written off as ‘too lacking in intelligence’ to understand anything. 

Add in to that our sensory struggles, our social difficulties, our straining to make sense of a world that just doesn’t, our frequent shame and embarrassment after a meltdown, our feeling of being ‘square pegs in a round-holed world’ which only grows stronger as we get older and more aware of others, our struggles with co-occurring conditions like executive dysfunction or alexithymia or anxiety disorders – and sometimes, of course, not even knowing that there is a name for these difficulties… Even if it doesn’t seem like it, we’re drowning in problems far worse than cleaning a bit of faecal matter off a wall.

But even that’s not the main point that always comes to mind when I think of martyr mommies.

My main point is this – that most of their pain is self-inflicted. Why? Because it’s caused by their resisting their child’s autism, fighting it, bewailing it, trying to crush it and being inconsolable when they can’t. So much of their distress, if you read their accounts closely, isn’t caused by things like faecal smearing or meltdowns or escaping, but because their child behaves in an obviously autistic fashion. 

So they get extremely upset when, for instance, their child rocks or flaps, hides in their room when visitors arrive, doesn’t use oral speech, does talk but not in a ‘normal’ way, refuses to hug Grandma, insists on their food being ‘just so’, spends hours arranging the family bookshelf, or ‘prevents’ their parents from ‘enjoying’ family holidays or outings. No allowance is to be made for their child’s ‘bad’ behaviour, they must be ‘trained’ out of it, no matter the long-term consequences.

Sigh. These parents come from such a different place regarding autism, and are so entrenched in it, that I hardly know how to talk to them, when I read their posts. The worst of them seem, sadly, beyond reach. Whether ‘warrior’ or ‘martyr’ however, I always yearn to ask them “if you really love your kid so much, why are you trying to eradicate something that’s intrinsic to their very being? What does it matter that they line up toys, touch their food ritually before eating it, or flap their way round the supermarket? Is this really such an awful thing?” It seems in their eyes, that it is. And that’s the root cause of their stress - not the autism itself, but that they can’t accept their kids as they really are. 

Many other parents of autistic kids, while sometimes having traumatic experiences, and almost as frequent struggles with getting services, don’t seem anywhere near as stressed out as martyr and warrior parents. They certainly don’t seem to spend their days angsting over the mere fact of their kids being autistic, regardless of their actual behaviour. They simply accept their kid’s autism as a fact, something to be worked with rather than against, and go from there. Sometimes on the spectrum themselves, sometimes not, they are our allies or potential allies, and I salute them. If more parents of autistic kids were like our allies, the world would undoubtedly be a much better place for autistics, or at least more people would be working to make it so.

Unfortunately, the warrior and martyr parents are not. And that is the real ‘tragedy’ of autism in their families.

I'm Impatient.

I’m impatient. I’m getting more and more fed up with the whole mess of autism attitudes ‘out there’, the entire public image of autism; the misconceptions, the distortions, the downright fallacies, the blind, unquestioned assumptions. There’s a part of me that wishes I could just sweep it all away, clear the decks, like someone swiping a table clear with a backhand - I’m that frustrated, because I am seeing more and more of the damage it’s doing. So many things are connected to this bad image of autism. Let me give just a sampling of that.

- The autism parents who see autism as a ‘tragedy’, and spend mega-bucks on all sorts of useless or downright dangerous treatments to their kids, many of which, if done to any other kid, would be deemed ‘abuse’. But hey, it’s okay to do this to autistic kids, because they’re not ‘properly human’, and it’s ‘for their own good’, to make them ‘normal’, which is a good thing, right?

- These same autism parents claiming that by giving those ‘treatments,’ they are ‘rescuing’ their children – the assumption being that just to be autistic means you are suffering – because autism is so terrible, a disease, a tragedy, a ‘thief’ of the ‘real’ child supposedly buried underneath, a home-wrecker, a burden, blah blah blah.

- Again, some of these same autism parents, who go on camera saying that they’d ‘get rid’ of the autism if they could, that they wish they had a ‘normal’ kid. Right in front of those kids. And all their ilk who don’t go on TV, but spend years telling their autistic kids anyway, in one way or another, that to be autistic is a Bad Thing.

- The ‘autism industry’, who cons those parents into spending those mega-bucks on those treatments, and by golly if that one doesn’t work, or that one or that one, oh look, here’s something even more weird and even more expensive, and if you don’t do it, you’re a bad parent, maybe even guilty of ‘abuse’. (Yes, really.)

- The young adult autistics (and some not-so-young ones) who think having autism means being ‘doomed’. Of course they hate their autism – who wouldn’t hate something that seems to have ‘ruined’ their lives? Some of these are of course (surprise, surprise) the now-adult children of the above parents.

- Yet other autism parents, who think that their autistic child should be allowed to do whatever they want, whenever they want, regardless of whether it impinges on other people or not, because “they don’t understand”, so there’s no point in setting limits on their behaviour, or disciplining them in any way.

- The special autism ‘schools’ or camps that spend more time repressing the kid’s autistic traits, punishing their stims, etc, often forcibly and harshly, than they do actually educating the kids or even getting to know them properly.

- The struggles autistics have in regular schools, and the teachers who seem afraid of them, the other kids who bully them or reject them, the lack of support, and then how they get tossed out because they’re ‘aggressive’ or ‘don’t follow the rules’.

- The adult autistics who also think that being autistic automatically means being miserable, like the one who, when tossed out of a Facebook group, told the moderator that if she wasn’t suffering and unhappy, then she “couldn’t really be” autistic!

- The high unemployment rate of those with autism, not just because we flub interviews, but because we get fired or leave because of the hostility and/or manipulations of co-workers and bosses.

- The hesitation and caginess many autistics who are employed have about ‘coming out’ as such, for fear of losing their jobs, or incurring hostility, misunderstandings, rejection or arms-length ‘sympathy’ from their co-workers/bosses.

- The hostility directed at many autistics from their own family members, who think we’re either ‘faking it’, or ‘could pull ourselves together if we tried’, or misconstrue our actions and words, or just use us as scapegoats for family tensions.

- The professionals who think they ‘know what autism is like’, so of course we “can’t be” autistic if we can talk well, have a partner and/or kids, hold down a job, etc.

- The family members and general public who also assume they ‘know what autism is like’, and so if someone says they’re autistic but they don’t seem to fit that mold, that person, they decide, must be ‘faking it’, ‘jumping on the latest bandwagon’, etc, etc.

 - The way the media beat up any story that involves any autistic or any person who even might be autistic committing a crime, as though to have autism/Aspergers means being intrinsically violent or criminal.

- The same media, who regularly trumpet yet another and even more bizarre ‘cause’ of autism, everything from motorways to older mothers to the Internet, as I recounted in a previous post.

- The researchers who, when they find a ‘difference’ between us and NTs, always assume that this represents a ‘lack’ or ‘deficiency’ or ‘pathology’ on our part. In their minds, NT= always good, and autistic = always bad.

I could go on, but you get the picture. It’s all connected. All, all, stemming from the concept of Big Bad Autism. Intrinsic to this is a whole bunch of totally incorrect and distorted ideas of what it means to have autism, what motivates our behaviour, etc, etc. To give just one example of this – our lack of eye contact. Experts decided that this is because we’re “not interested in other people”. BZZZZ. WRONG. We don’t make eye contact because we find it a) painful, b) invasive, c) irrelevant (because we don’t get the ‘messages’ we’re ‘supposed’ to get from it), and/or d) many of us find it difficult to look at and listen to people at the same time. So how, you might ask, did the ‘experts’ get it so wrong? Because. They. Never. ASKED. Us. They made an assumption, and the assumption became ‘Truth’, and that ‘Truth’ is still being faithfully repeated and perpetuated. This is but one example of why we demand nothing about us, without us.

It’s like the gay thing, in some ways. Once upon a time, gays and lesbians were also assumed to be ‘unhappy’, ‘twisted’, ‘scourge on society’, blah, blah, blah, too. We ‘had’ to be, because being gay was an ‘aberration’, right? A twisting of the ‘normal’ pattern, right? So ‘of course’ we were unhappy, etc, because we weren’t heterosexual, right? A similar story could be written for old attitudes to many other minority groups. Well the world has largely changed its ideas on them, due to various social movements, and by goddamn it’s going to have to change its ideas on autism too.

Because I’m sick of the whole thing. I want to throw it off, the way you throw off stifling covers on a hot night. The way we throw out clothes that don’t fit us. The way we rip up an old script that isn’t of any use to us anymore. Like that. Yeah, like that.

I know I can’t. But I want to. I’m so sick of what is. I want each and every autistic person to be seen as an individual, as a human being first and foremost, with the same needs – for respect, education, etc, as any other human being, albeit we have to do these things or get these things in our own way. Yes, there are broad similarities, many traits we have in common, but we are first and foremost human beings, not a ‘label’ or a ‘category’ or a ‘specimen’, though an autistic identity (as an aspie, HFA, whatever) must be taken into account as an essential part of that human being. I want people to see beyond the diagnosis and the labels to see what our real capabilities are – like the case of the autistic kid whose parents were told not to worry about teaching him to read and write, to focus instead on things like tying his shoes – and now he’s proved to be a young genius. I am certainly not claiming we’re all geniuses, and nor should we have to be, to be accepted, my point is that trying to pigeonhole us is actually doing both us and the world a disservice.

Because enough is enough is enough. It’s got to stop. Things have to change. The public image of autism is beyond overdue for a complete overhaul. So I’m impatient, I’m very, very impatient. And I like to think that I’m not the only one.