Saturday 19 May 2018

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.