Things I Wish I Never Had To See Again

 So here we are in April again, and the legions of Autism Awareness are out again. I’ve become quite cynical or maybe just jaded in recent years, as it sometimes seems like the more things change, the more they remain the same. There are so many things, so many people, I wish that I never had to see again. Here are the most prominent of them, and what they say, sometimes outright, sometimes not, but always implicit.

‘Autism mommies’ (and sometimes daddies). (Aka warrior mommies, or martyr mommies on a bad day.) “You’re not like my child, you’re too high-functioning, if you can post online then you’re not really autistic/not autistic enough to understand, what about the ‘real’/‘severe’ autistics, you don’t know how hard it is to raise these children, my child will never be independent, you’re so rude, if you would tone down, if you would shut up, you should say that you ‘have autism’ not ‘am autistic’, I am an ‘autism mom’, I’m fighting autism every day, I am my child’s voice, I want my child to be ‘normal’, my child loves ABA, I don’t care if adult autistics don’t like it, I’m going to Light It Up Blue/wear the puzzle piece/support Autism Speaks anyhow, you’re not really autistic anyway so your opinion doesn’t matter…”

ABA defenders/promoters. “I’m sorry if you were hurt but that’s not ‘real’ ABA, that’s ‘old’ ABA and we don’t do that anymore, my ABA isn’t like that, our children love ABA/their therapist, it’s scientific and ‘evidence-based’, we’re helping these children, we’re teaching them skills, we’re teaching them how to be like other kids, you must want them to not have any therapy or help then, you must want them to grow up to be like animals screaming and pooping in their pants, we’re helping their families, this is what the parents need, it’s not true that ABA is torture or abuse, we don’t punish them anymore, you don’t know what you’re talking about, you’re not really autistic anyway so your opinion doesn’t matter…”

Inspiration porn peddlers. “Look at the wonderful boy who asked the nerdy girl ‘with autism’ to the prom, isn’t he wonderful, such an inspiration, look at this program or device or special class that’s ‘helping’ children ‘with autism’ learn how to talk/interact ‘like normal’/play special sports/be a team mascot, isn’t it inspiring, aren’t they good for doing this, aren’t we good for sharing this? Look at how our faces soften, our smiles beam wide, our eyes glaze over with our own goodness and compassion for these poor creatures, isn’t it inspiring? …What’s that? No, we didn’t ask the autistic kids/teens/young adults what they thought about being ‘helped’, we didn’t include their words, their responses, their ideas, in our article/news item/puff piece, because we already talked to their parents and teachers and the ‘experts’, so it’s not necessary…”

Media bias and ignorance about autistics. “Autism is a disease/epidemic, it’s brain damage, it’s a layer that must be removed to let the ‘real’ child shine, the world would be better off if there was a cure for autism; it’s a childhood thing, mostly little white boys, they’re non-verbal and almost mindless, they lack empathy or understanding of others; they’re nerdy young white male computer geeks, with no caring or empathy and zero social skills; people are saints to put up with/help them, their parents deserve a medal… what’s that? Ask the autistics what they’re feeling? Communicate with them? Consider how things might look from their point of view? Consider whether there might be autistics that don’t fit into these narrow little categories? But we already know All About Autism, because we’ve talked to their parents and teachers and the ‘experts’, so it’s not necessary…”

Biased research on autistics. “We must compare autistics against the ‘normals’ and discover their defect, because any difference is a pathological one, in no way can autistics ever be seen as okay or maybe even better than non-autistic controls, even if we must invent new terms or slant the research results in favour of those controls, even if that involves recasting morally or socially dubious results as ‘good’, and autistic’s purer motives as ‘bad’, because just being autistic is a wrongness in itself, so autistics can never be better at anything, everything they do is wrong simply because they are autistic…. What’s that? Autistics are fine just as they are? They’re not an inferior version of ‘proper’ human beings? Impossible! We’ve already outlined their deficiencies, and we’re the experts anyhow, we know autism best, so it’s not necessary to change what we’re doing…”

Violence against autistics. “Autistics bring in on themselves because they’re weird, they’re the r-word, they’re ‘natural’ targets, what do you expect, if they’d only behave properly they wouldn’t get bashed and bullied and murdered, it’s their own fault; if my child could just be normal I wouldn’t have to do this to them, if I didn’t have an autistic kid my life would be so much better, they’re better off dead anyway, they drove me to it, I’m the victim here; these kids need controlling and suppression so it’s only right that the usual rules shouldn’t apply to them, it’s only natural that teachers don’t want them in their class or have to put them into isolation rooms or tie them into chairs or hold them down on the floor or have them arrested no matter what their age, it’s only right that the Judge Rotenberg Centre uses electric measures to keep them in line, it’s only natural, I mean they’re animals really, so what does it matter what’s done to them… What’s that? Human rights? But they’re Not Really Human, so…”

We know none of this is true.

We know it in the depths of our bones, in the depths of our hearts, in the aching depths of our pain. And we’ve told them so, again and again and again… but they still aren’t listening. In fact, far from listening, too many of them keep coming on to our pages or groups and talking over us, telling us how wrong we are, how defective, and how They Know Better and it’s Their Responsibility to Educate us… and get furiously offended, or loftily ‘forgiving’ and ‘above’ us, when we reject that so-called education. We’ve seen it all before, heard it all before, so many times. Too many times. It just doesn’t seem to end. We have more allies now, but somehow we seem to have more enemies too.

And meanwhile, we suffer. We bleed. We live in agony.

And no-one listens to our screams, our protests, our pleas.

They’re not listening.

I am so tired of this. I wish I could never hear any of the above again. But I know I will. And that’s why I am so tired and jaded and cynical.

Are you sick of autism awareness yet?

The Public Image Of Autism Is All Wrong

The public image of autism is all wrong.

Well, duh, most autistics are probably thinking about now. But I want to dive deeper into how it’s wrong, and how thoroughly distorted that image is.

It seems to me that there is an entire tangle of intertwined fallacies about autism in the public domain. Some are just assumptions based on meeting an autistic child, or hearing about one, or seeing one on TV. Some are based on beliefs about ‘normality’ or ‘good behaviour’ or ‘spoilt brats’. Yet others are spread by those who make money out of anxious parents or bewildered schools, but have become part of ‘public knowledge’ about autistics. And some are, or have been in the past, solemnly pontificated by ‘experts’ (who are rarely if ever autistic themselves), whenever autism crops up in the media.

The more you look, the more you realise that there are so many of these fallacies, but I’ll try to isolate out the big ones, which, I believe, lie behind most of that tangle.

1) That there are different types of autistic. It doesn’t matter whether you label them low/high functioning (labels which are deeply problematic in themselves), or Asperger’s vs classic autism, or group them into levels, or whatever. The separation in people’s minds persists. So people will hear ‘autism’, and think, at one extreme, of the stereotypical non-verbal young boy, probably white, who sits in the corner either screaming or rocking or spinning objects, possibly soiling himself. These kids are often seen as the ‘real’ autistics.

And at the other extreme, they’ll maybe have an image of a highly intelligent but socially inept teenager/young adult (again, usually a white male), possibly with personal hygiene issues, who’s a hacker/maths/science geek. Either way, the picture is both inaccurate and unflattering, not to mention making any autistic who doesn’t look like either of these pictures virtually invisible.

A central feature of this fallacy is that only children are autistic, and that we somehow grow out of it. The almost complete absence of adult autistics in the media imagery furthers this notion. People also believe that the ‘more autistic’ you are, the more you ‘suffer from’ autism. So if you’re at the ‘high-functioning’ end, then you don’t have any ‘real’ problems, and should just shut up and get on with your life. It also sometimes leads people to say silly things like “we’re all a little bit autistic”.

The issues caused by this division of autistics goes deep. Those thrown into the ‘low functioning’ category routinely have their intelligence denied, their attempts at communication ignored, and/or get subjected to harsh ‘therapy’, or the kind of abuse that tends to get dished out to those who can’t complain. Meanwhile those deemed ‘high functioning’ have their very real difficulties overlooked, and go unsupported and often completely alone with their struggles. And heaven help you if they can’t slot you neatly into either category, you fall completely between the cracks.

The truth however is that THERE IS ONLY ONE TYPE OF AUTISM. You’re either autistic, or you’re not. End of. You’re either autistic or you’re not. Whatever our ‘functioning label’, etc, we all share an autistic mind. How this manifests in each individual is what creates the differing presentations of autism, NOT autism itself. Which brings me to my second fallacy.

2) That co-occurring conditions are ‘autism symptoms’. This is an important point. Many of those slotted into the ‘low-functioning’ category actually have other conditions, such as ataxia, apraxia, etc, which I believe are at the core of their inability to verbalise their thoughts and understandings. And because they can’t talk, people assume they have nothing to say, that they’re unintelligent, an ‘empty house’, and certainly not considered worthy of the same rights as others (this may not be conscious on most people’s part, but it’s definitely there). That this approach doesn’t actually help is ignored or not seen as important. It’s the person, or rather their autism, who’s the issue, in their eyes, not their treatment. A circular thinking is thus created – the person is ‘beyond help’, and therefore you shouldn’t try to help them.

Even for the so-called ‘high functioning’, many of our problems are co-occurring conditions too, whether inborn ones such as sensory processing disorder, or acquired ones like anxiety disorders. We may also struggle with communication or movement disorders, even though we’re not supposed to have them, and so evidence of them is ignored or suppressed. We’re considered ‘close enough to normal’ to ‘pass’, and so it’s demanded that we do, at whatever cost.

But the core problem here is that NONE OF THESE CO-OCCURRING CONDITIONS ARE ACTUALLY AUTISM ITSELF. They also occur in non-autistics. They may be more severe in autistics, or more common amongst us, but they’re still not exclusive to us, and are not central to being autistic.

And until these conditions are disentangled, correctly diagnosed and dealt with, there will be no improvement in the lives of most autistics. It’s not enough to say ‘this person is non-verbal, therefore non-intelligent, so nothing can be done with them’, or ‘this person is anxious due to their autism, therefore nothing can be done for them’, etc, etc. An entirely different approach is desperately needed.

3) That autism can be removed or ‘cured’. At the core of this concept, is the idea that autism is a sort of detachable layer, or that young autistics are somehow malleable enough to stop being autistic, with the right treatment. So much effort is put into making us “indistinguishable from our peers”. Yet so much of this effort is not only pointless, but unnecessary, if you simply accept autistics as they are (yes, even the ‘low functioning’ ones. They need acceptance most of all.)

But even if being autistic is grudgingly accepted as inherent in the individual, many still think it worthwhile to make us seem as non-autistic as possible. There are two unquestioned assumptions to this – firstly, that being, or at least appearing, neurotypical is superior to being autistic. Secondly, that this will magically make our lives easier. Our social lives will improve, we’ll get jobs, be happier, find partners, merge into the general population, blah blah blah.

The big problem with this fallacy is that IT. JUST. DOESN’T. WORK. You can give an autistic kid all the ‘social skills’ in the book, but the other kids in the playground will still pick them out as ‘weird’, and pick on them, bully them or reject them. Adult autistics have similar experiences. Teaching us to hide our autism won’t save us. It could even be argued that it makes things worse, because, whether others know we’re autistic or not, they still see what we are as somehow ‘bad’.

Even more importantly though, is that even if we can completely ‘pass’, the cost of it is extremely high, because WE ARE ESSENTIALLY PRETENDING TO BE SOMETHING WE’RE NOT. I don’t think I can emphasise that enough. Low self-esteem, depression, anxiety, poor mental and physical health, self-harm, and even suicide attempts (some successful) are almost inevitable results of spending almost our entire time acting. It’s rather like someone gay in the closet back in the days before gay liberation, not only concealing their sexuality but actively pretending to be heterosexual. As someone who has spent years in both types of ‘closet’, I can confirm that it takes a ginormous toll.

4) That autism is a ‘disease’ or ‘epidemic’. This is based on the rising rates of diagnosis, and on that core belief that simply being autistic is a Bad Thing. Those who hold this belief (or profess to, for financial gain) will talk solemnly of the ‘burden’ on society, families and schools that we present. They’ll pathologise all our behaviours, even the harmless ones, insist on various therapies, milk anxious parents or compliant educational authorities, and generally try to lock us into boxes that actually separate us from those peers they’re supposedly wanting us to become more like.

When the actual truth is that AUTISM IS SIMPLY A DIFFERENT WAY OF BEING. A different way of seeing, interpreting, thinking, processing and reacting to the world and the people in it. We often say ‘it’s not a software glitch, but a different operating system’. But when we try to tell people this, too many slam back with stories about autistics soiling themselves (why are they so hung up on poo?), or ‘my child will never be able to care for themselves’, etc, etc, etc, ad nauseum. Non-autistics have NO IDEA how tired we all are of ableist ‘autism mommies and daddies’.

Another, related truth is that WE’VE ALWAYS BEEN HERE. If you doubt me, read Silberman’s Neurotribes. Read any account of ‘changeling’ children, or children ‘possessed by devils’ in medieval times. Read about past generations committed to mental hospitals or asylums, locked in attics, or simply killed because they were ‘not right in the head’. If anyone wants to know ‘where were the autistics in past generations’, that’s where. The ones who could ‘pass’ became rich eccentrics, steady workers, faithful husbands and wives, lonely shepherds or quiet nuns, visionaries and prophets, and just day-to-day people who went unnoticed in a quieter, slower, more family-orientated world.

Some may ask, so what? What does all the above matter? Why is it important if people have the wrong ideas about us? It matters because IT IS HURTING US. It is hurting us so bad, and so much.

It hurts us when our intelligence is demeaned, or our problems are ignored.

It hurts us when we have to act like NTs just to get even a modicum of respect.

It hurts us when we’re put through horrific so-called therapies like ABA, and get PTSD as a result.

It hurts us when even the way we move and the things we love are pathologised, and they force us to stop doing them.

It hurts us when we blunder through our lives without help, constantly confused and overloaded, feeling like we’ve stumbled into a swamp with no idea how to get out.

It hurts us when we’re misunderstood, our words twisted and our motives doubted.

It hurts us when we’re ridiculed, rejected, beaten up, manipulated, abused or even murdered for the ‘crime’ of being autistic.

It hurts ALL autistics when some of us are told that we’re ‘not really’ autistic, and that we shouldn’t worry about how ‘those other autistics’ are treated, because ‘they’re not like you’. When we know that they’re actually our brothers and sisters, and our next generation.

It hurts us. All of it hurts us. And it’s got to stop. These misconceptions need to be dismantled, thrown out as the rubbish they are, and a new vision of autism and autistics take their place. Because we’ve suffered enough, and it’s time for it all to stop.

Because it hurts.

It hurts.

So please.

Just…

Stop.

Now.

I Just Need To Have A Bit Of A Rant

I’m going to indulge in a bit of a rant here people, because lately, I seem to be seeing more and more nonsense of various kinds on social media and elsewhere, both new and way more of the old types of nonsense. And I’m fed up with it.

I’m fed up with the anti-vaxxers, the flat-earthers, the creationists, the bleach-will-cure-autism crowd, the drinking-your-own-urine lot, the essential-oils-will-cure-everything people, and all their ridiculous, ridiculous, not to mention sometimes dangerous, ilk. I’m tired of stupid. So I have to ask –

WHAT IS WRONG WITH YOU PEOPLE?? DO YOU KEEP YOUR BRAINS IN YOUR POSTERIORS? DID YOU SIT DOWN TOO HARD AND BREAK THEM? WHERE IS YOUR FREAKING COMMON SENSE?

Why do you antivaxxers/pro-diseasers cling to a theory repeatedly proven false, its promoter shown to be a fraudster and a liar? Why do you insist on posting stuff full of wonky science you obviously don’t really understand, even when REAL scientists and doctors point out ‘that’s not how it works’? Why do you assert that pro-vaxxers must all be ‘paid shills of Big Pharma’, even as you’re blindly listening to charlatans and letting them fleece you? Why do you maintain that vaccines are ‘full of toxins’, flying in the face of the evidence that they’re not, and that ‘vaccine damage’ isn’t really a thing? And why, why, why do you insist that vaccines are harmful, but somehow the diseases they protect against are ‘harmless’? I mean, logic much? Hello?

And flat-earthers, why are you clinging to a theory (and it was never more than that) of the planet which has long since been disproven and hence discarded centuries ago due to the discoveries of ACTUAL SCIENTIFIC OBSERVATIONS of the universe? Were you all asleep down the back in science class? Did some hot astrophysics major turn you down, and threaten your fragile masculinity? (All of you I’ve seen are male.)

And you creationists – if you find comfort and/or a moral code in the bible, whatever. But to use it to fool yourself into believing that a bunch of ancient creation myths somehow translate into a basis for going against all the findings of centuries of science and archaeology? And then to have the nerve to demand schools teach your ridiculous beliefs as ‘facts’, flying in the face of actual scientific reality? No. Just no. I’ve SEEN your ridiculous, deluded ramblings, and they’re about as far from ‘truth’ as it’s possible to get.

And why are you bleach-swillers forcing a caustic substance on your kids, either up their rear ends or down their throats? Why are you so willing to cause them pain, and see huge chunks of their intestinal lining ripped out? Why can you not see the truth? Are you THAT scared of autism? Even after autism has been well established as genetic, and nothing to do with imaginary ‘parasites’? And the same goes for all the other ‘curebies’ out there, whatever so-called wacky ‘treatment’ you’re using. Not only are you totally barking up the wrong tree, YOUR tree doesn’t in fact even exist. (And don’t get me even started on ABA.)

And you warrior-cum-martyr mommies and daddies, when we challenge you, how on earth do you have the gall to tell us that we ‘aren’t autistic enough’ to comment, when you’re NOT AUTISTIC AT ALL and by your own logic, therefore shouldn’t say anything? How can you tell us that we ‘don’t understand’, ‘you’re not like my kid’, blah blah blah, and even tell us outright - as one particularly obnoxious woman did recently - that we have ‘no right’ to use identity-first language, no right to talk to parents of autistic kids, no right to say anything at all about autism? To anyone? That we should just shut up and go away - when YOU obviously know NOTHING about autism yourselves, while we, who actually LIVE autism, are ignored, derided and shunned? Please, tell me where the logic, let alone the fairness, is in THAT?

And ‘health nuts’ – are you competing to see who can do the most stupid thing in the name of ‘health’? It’s bad enough when you insist that you can’t be healthy unless you buy a ton of expensive foods that we poor can’t afford, or tell those of us with chronic illnesses or disability that we ‘need to just take this miracle cure’, or ask if we’ve ‘tried yoga’. But when you do things like sculling back your own urine? Urine is what the body has already discarded as waste, what possible good can re-ingesting it do? You’ll just be forcing the body to refilter it, and probably giving yourself a bellyache and foul breath to go with it. It’s beyond belief that you could be sucked in by this nonsense.

And while I’m on the subject of health - essential oils as ‘miracle cures for everything’? Great in the bath or an oil burner, but ingesting it? Really? Are you totally deprived of all common sense? This goes double for those of you who won’t vaccinate, but you put toxic oils inside you? You make me want to find the nearest brick wall and bang my head against it. Hard.

And why do you conspiracy theorists of all stripes delude yourselves that the ‘gubmint’ is ‘out to get’ you? That it’s created elaborate hoaxes to fool you, or ‘poison’ you, or whatever? Why are you so convinced they even CARE what you think, that they’d go to such lengths? Faked moon landings and all? That you’re the only ‘woke’ ones, knowing stuff that the ‘sheeples’ don’t?  Is your ego really THAT big? Your sense of self-importance that overwhelming? Are you that freaking NEEDY? Do you really believe the world revolves around you? GET A GRIP ON YOUR EGO!

Newsflash, people - the rest of the world isn’t out to get you. Instead it’s rolling its collective eyes at you, laughing at you, or wanting to slap some sense into your stupid head. And no amount of ego-stroking in your science-forsaken, logic-forsaken, rationality-forsaken echo chambers on social media will change their minds.

And no, science isn’t perfect, governments aren’t perfect, nobody and nothing is perfect. But to use their mistakes, to blow them up out of all proportion and twist them into things they’re simply not, and then wholesale INVENT stuff, or to claim that the GOVERNMENT is inventing stuff ‘just to fool you’, defying all logic and common sense along the way, simply to boost your own egos and satisfy your own sense of self-importance and ‘wokeness’, is just plain stupid. There’s no other word for it.

And when you add in all the other nonsense out there, the resurgence of right-wingers and Nazis, Trumpet and his sickening cronies, anti-science and fundamentalism on the rise, school and other mass shootings and the whole gun lobby thing, the whole damn ‘hate autism’ thing and the damage it’s doing to autistics, not to mention all the hatred and wars and oppressions and general idiocies running riot - how utterly screwed-up the world is in general – it’s all enough to make me lose what little faith I have left in the human race, and to go crawl into a hole and die.

The only thing that gives me any hope at all is the numbers of those opposed to all these stupidities. Those brave people who are willing and ready to take on these fools, to rip them apart with logic, debunk their conclusions with REAL science, and skewer their idiocy with oh-so-apt humour, plus of course those willing to get out there and fight them offline as well.

Particularly the younger generation. I’m old. I’m tired. I admit it. I’m not the Fiery Young Radical I once was. I do what I can, but it’s not that much. And I know that, short of a miracle, I probably won’t live to see any huge change, especially in the way autistics are regarded and treated. So the baton has already been ‘handed on’, and I’m proud of what they’re doing.

Otherwise, I am SO over it all.

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.