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.

Sunday, 29 April 2018

More On Not Belonging, And Introversion

One thing I didn’t list in my previous post about not belonging in this world, is being an introvert. There are differences of opinion, I’ve found, on what percentage of the population are introverts or extraverts, whether the two types are just the extremes, and how you define introversion anyway, but by any definition, I am thoroughly and completely introvert. Although, as I’ve said before, not all autistics are introverted, I unquestionably am. I feel this is yet another thing that sets me apart from the mainstream of society.

Introverts have long had a bad press, whether they are labelled as such or not. Regardless of their actual numbers, extraverts do dominate the social arena. They do this by being louder, more ‘out there’, more ‘sociable’, and hence more visible, but also by extraversion being seen as the ideal personality type, in both the public mind and the professional literature, particularly in Western countries. It’s only fairly recently that this has been challenged. Nonetheless, it’s still the case that introverts are not well understood, or really accepted as they are.

Being an introvert has meant a lifetime of misunderstandings and pressure from extraverts -

- “Come out and have fun!” - as though the first invariably leads to the second. 

- “Don’t look so sad/why the long face/cheer up! It may never happen!” – when I am merely lost in thought.

- “Why so quiet? Cat got your tongue?” – if I wasn’t chattering like a bird at every opportunity.

- “why are you hiding away in here? Come out and join the party!” - when I’d retreat into some other room for a bit of peace and quiet at a social event. My need for solitude is usually seen as abnormal, and not healthy.

- “You should try and make more friends!” – (I’ve often been tempted to ask, “out of what? Cardboard? Papier mache?”) The assumption seems to be that having more people in my life meant I’d automatically be happier. Riiiight…

The other reaction I persistently got was to be totally ignored. Over the years, I came to believe I must be either very boring or some awful person, because so many people seemed to overlook me or turn away, or even outright cold-shoulder me. At a friend’s house one day, for instance, another woman there, who was talking to my friend, refused even to acknowledge my existence. She pointedly ignored me when I spoke, talking only to my friend, and not even looking in my direction. It was so noticeable that even my friend, a kind, generous soul, became visibly uncomfortable, glancing from her to me, looking puzzled and anxious. I walked away in the end. It just wasn’t worth the hassle. But it did leave me wondering what was ‘wrong’ with me, that someone I’d barely met should treat me like that.

My response to all this, besides feeling like I was somehow warped or boring or just plain inferior, was to try to make myself over into what I thought I ‘should’ be – like others. I would force myself to go to social events, stay longer than I really felt good with, talk more than I really wanted to, or simply pretend to be something I knew intrinsically I wasn’t. It did not make me happier, or transform me into a party-lover, it just made me more tired, and more convinced I was Not Good Enough as I was.

Mixed in with this struggle was a lot of resentment – I also, on some deeper level, didn’t really feel that those oh-so-social people were so much better than me, just noisier. In fact, some of them I privately thought of as ‘exhibitionists’, ie deliberately displaying their emotional states to get attention. It wasn’t till I learnt about the differences between introverts and extraverts that I realised that it was as natural for them to display their emotions as it was for me to keep mine inside. Mostly though, my earlier years were simply rather lonely.

And yes, I know now that there are many other introverts in the world, and I do feel a connection with them, but the thing with being an introvert is that you value large chunks of solitude – away even from other introverts. Having said that, I would trade one heartfelt, intense and meaningful conversation with another introvert for any number of parties, any day. And the people I can have such conversations with are pearls beyond price, in my view.

The bottom line however is that I’m a loner, a social outsider by nature, and a semi-recluse by choice. This is what I’ve found is the best way for me to live, and that the world can’t seem to accept that, and me as I am, is just one more thing that makes me feel even less part of this world.

Monday, 16 April 2018

I Don't Belong In This World

I don’t belong in this world.

By this, I don’t mean that I hate the world, or anyone in it. I love or have loved many people, some still alive, some not. And while sometimes I’ve shunned the world and held myself aloof from it for my own self-protection, yet at other times I’ve felt huge pity or compassion, even aching sorrow, for the world’s inhabitants and whatever pain they’re suffering, and I still do.

I also love the world’s physical beauties, its forests and sunsets, beaches and waterfalls, sweeping mountains and ever-changing seas. I even love many of its manmade splendours – feasts of colour and light, music that transports me, or the many architectural wonders of the world, especially old buildings, archways, hanging stones and other ancient sites.

But I’ve never felt like I belong here.

This not belonging has many layers or facets to it. There are spiritual facets – I know this isn’t everyone’s thing, but it is mine. It has nothing to do with what anyone else believes or doesn’t believe, but rather with a series of personal understandings I’ve gained over the years. Many years ago, for instance, I was in the women’s spirituality movement, but left because of its focus on Mother Earth and our female bodies – something I just do not feel that connected to. And for much of my younger years, I experienced something I could only describe as a ‘butterfly in a jar’ feeling. Then one day I realised it was my spirit yearning to be free. My true home, I know now, is with the Divine. One day, when I’ve done all I’m meant to do in this life, I’ll get to go there.

But it goes beyond the spiritual. I find myself repelled by many of the values that rule the world. Over and over again, I see honesty, integrity, decency, basic civility and even common sense being sacrificed on the altars of Ego, Greed and Political Expediency. Whether it’s in the political arena or the personal, I see so many appalling behaviours, and constant attempts to justify them by blaming the victims or some conveniently horrible ‘enemy’.

This is a world where there’s supposedly ‘not enough money’ to ensure decent incomes, housing, education or medical care for all, yet somehow there’s always enough money to go to war. A world where if you’re black, you can be arrested for sitting in a coffee shop waiting for a friend, or shot at for asking directions, but if you’re white and rich you can literally get away with rape.

And then there are wars, and pollution, and a greedy ripping out of the world’s resources without thought for the future, the capitalist hegemony that knows the price of everything, but the true value of nothing. And yes, I know there are those who fight against these warped values, but on the whole, the good people are not the ones in power, and even where they are, they’re sailing against the wind. I despair for the world, I truly do.

There’s also the effects of my physical disability – an acquired thing, yes, but it’s meant that for most of my adult life paid employment has been minimal to non-existent, and I’m now pretty much unemployable. Ditto for education, and any kind of community involvement. People rush off daily to wherever, while I stand apart, and isolated. (And poor, of course, something else that separates me from most others.)

Being a writer also means standing apart from society to some extent anyway, being an observer rather than a participant. Not to mention, when I have had jobs, I always felt like I was ‘wasting time’, and not doing what I felt I was ‘meant’ to be doing, ie writing.

But if I was simply any of the above, I would still be able to find a sector of society I’d fit into and be regarded by all as just another part of humanity, even if some disagreed with my political or spiritual opinions, or disliked what I wrote, and so on. But I’m also autistic. And as an autistic, I feel at odds with the entire world on a daily basis, its precepts and practises that just make no sense, and the constant slamming up against unspoken rules and social expectations. Even after decades of learning social skills, this is still a regular occurrence for me, and, I suspect, for most autistics. It’s the ‘square peg in a round-holed world’ feeling.

And while we autistics now have our own community, it’s one that most of the world seems to think shouldn’t exist. We’re seen as less-than-human, or even ‘monsters’ or a ‘disease’, and anything people do to us is considered fair game by most. The usual rules of decency do not apply to us.

So I’m alienated most of all, perhaps, by how we get treated, a mistreatment which ranges from simple ridicule through forced normalisation to outright murder. Not to mention the do-gooders who think they’re being ‘nice’ to us but who reek of fake-cheeriness or pitying inspiration-porn, the parents who never listen to us, the professionals who pathologise us, the teachers who don’t grasp just how different we really are, the media who demonise us… The world makes it plain that it only grudgingly tolerates us, at best, and at worst actively seeks to eliminate us. 

So no, I don’t feel welcome on this planet, or that I belong here. And given all the above, I think this is understandable.