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.

My review of 'THAT BOOK'

I’ve been trying for ages to write a review of THAT book. You know - ‘To Siri, with Love’. (I got it from the library, because not of all of us can afford to go out and buy new books, and anyway, why should I put money in her coffers?) Others have written theirs ages ago, but I’ve struggled with even reading it, picking it up and putting it down numerous times.

It’s not because it’s badly written that I’ve struggled so much with it. In fact, it’s fairly well-written, chatting away about her life and her sons, with that kind of wry, slightly self-deprecating humour which is always engaging. And she clearly loves her autistic son deeply, and he loves her too. He seems a loving, gentle, caring soul, and it’s great that she’s done what she can to nurture that. Also, she is in synch with us on at least some points, for instance (p 53) on stimming. (See, I’m trying to be fair.)

But. Sigh. I started to read - and the first sentence on the very first page, in the Author’s Note, says – “These days, it’s considered politically incorrect to call a person autistic.” Um… does she even realise that autistics themselves prefer ‘autistic’? Was she even aware of the existence of an adult autistic community, when she wrote that part? (If she wasn’t, I’m sure she is now!)

 A few pages later (p7), she utters what is really the defining sentence of the book. “Every person with ASD I’ve ever met has some deficit in their theory of mind.” Read that again – EVERY person with ASD. Someone has already written an excellent analysis of this, so I only want to say this – Theory of Mind (TOM), as a hypothesis, in my opinion, has more holes in it than a block of Swiss cheese. But even if it were true (and it’s a big if) – she’s forgotten one thing.

WE GROW UP.

The classic TOM tests are done on children. I don’t know a single adult autistic, no matter where they are on the spectrum, who lacks self-awareness, and who isn’t perfectly well aware that other people have different thoughts, feelings and opinions. We may have great difficulty in working out what those thoughts etc are, but we do know they have them. And, despite what she seems to think, I don’t think our difficulties with reading NTs (p 66) is a sign of TOM.

I soldiered on. Yes, all the horrible things others have quoted are there, and just as offensive in context as out of it. She asks, for instance (p 121), “how do you say ‘I’m sterilizing my son’ without sounding like a eugenicist?” Short answer – you can’t. And no amount of waffling on about the history of eugenics, or how there’s a “good success rate in vasectomy reversals”, just in case she ever changes her mind, will alter that. It isn’t even the issue.

The issue here is that IT’S HIS BODY. Not hers. His. It’s HIS right to decide whether or not he ever wants sex, wants to be a father, wants to have a vasectomy. Not hers. Got that, Ms Newman? And as for the ‘Benny Hill soundtrack’ comment, I’m old enough to remember Benny Hill, and frankly, I find it both revolting and mystifying to associate him in any way with that sweet boy.

I’m not going to dissect the book chapter by chapter – someone has already done that, way better than I could. My concern is rather with the underlying message of the entire book. Because despite her sometimes using adult autistics as a resource, her attitude to autistics in general is, well, troubling. I finally realised she really and truly feels, deep down, that being autistic is an inferior state, that to her we are a lesser breed of human. Even her attitude towards her own son seems rather like what you might have towards a beloved but somewhat less-than-perfect pet.

An example of this is when she compares her two son’s conversations with their friends. Her NT son’s conversation, riddled with smug one-upmanship, is somehow ‘better’ than gentle autistic Gus’s more straightforward communication (pgs 163-164), because it’s more ‘normal’, more ‘what friends are supposed to be about’. (Says who? Is there some rule book somewhere?) Or it’s more ‘proof’ of our lack of TOM. And on it goes. If autistic ways differ from NT, they’re bad, or lesser, or just wrong, or signs of a ‘deficiency’ in us… you get the picture, and I’m sure you’ve heard it all before.

There’s also her comments on autistic students at Cambridge objecting to Baron-Cohen’s suggestion that there will soon be a prenatal test for autism. While she allows that it’s okay to ‘not be normal’ (how kind of her!), she also says (p 213) “If you are on the spectrum and you’re at one of the finest universities in the world, you cannot speak for the person alone in a room, forever spinning the bright shiny object.” Translation: “you’re too high-functioning to understand/speak for the ‘really’ autistic”. I’ve already expressed my feelings about that sort of attitude here and here. Suffice to say that this kind of talk is both perpetuating a false division and unhelpful to all autistics. (Are you now understanding why it took me so long to read this book? It was all I could do to not repeatedly throw it across the room.)

And then there’s the issue of how she’s reacted to autistic objections to the book. Firstly, she seemed startled, saying that she hadn’t written it for autistics (imagine if a white woman wrote a book about raising a black child, then, when black people objected to her racism, said that she ‘hadn’t written it for black people to read’. Imagine the furore.) She’s followed this up with working systematically to silence our voices, even making pitying, denigrating comments about how our reactions are somehow ‘proof’ of that ‘lack of TOM’. Or perhaps, Ms Newman, we understand perfectly well when we’re being insulted and silenced, and quite naturally object to it.

The irony of us using the self-awareness and awareness of ‘different minds’ that we’re not supposed to have, in order to protest her state of mind, is not lost on me. It seems to be lost on her though – she seems unable to understand our states of mind, our opinions and feelings, how hurt we feel, how pushed out into the cold, how dehumanised, yet again.

This book is a strange mixture of awareness, confusion, misunderstanding, and sort-of-acceptance mixed with subconscious prejudice. It’s absolutely riddled with ableism. Despite being entertaining, despite it no doubt appealing to the ‘autism mommy’ crowd, it won’t make our lives any better. I doubt it will even make the lives of our parents any better, except perhaps in a “confirmation bias” kind of way.

The list of those who have done the autistic community a disservice is, alas, a long one. Ultimately, and sadly, Ms Newman has just been added to that list.

My Autistic Acceptance Day post - On Allies - Again!

Lately I’ve been thinking again about allies. By rights, adult autistics and the parents of autistic children should be natural allies, as these parents are raising the next generation of us. We should be working together. But alas all too often we’re distinctly not. I think the reasons for this are many.

On the one hand, parents have been fed the message that autism is a Terrible Thing, an epidemic or disease, that it’s caused by vaccines, mercury, the ‘wrong’ gut bacteria, too many antibiotics in pregnancy, or whatever the cause de jour is this week. They’re frequently told, right from diagnosis, that their child needs forty plus hours a week of intensive ‘therapy’ from a very young age to ‘get rid’ of the autism, or their kid is doomed. They’re told that their child will have no future, their marriage will break up, their other children and indeed their whole family will suffer if they don’t.

Terrified, overwhelmed, having no understanding of what it really means to be autistic, they succumb to all this, and some take years to work their way out of it. Many, alas, never do, and become vociferous advocates of the therapies, or rabid anti-vaxxers. They are sadly not open to hearing from adults on the spectrum at all, and can even be hostile. Others simply ignore us, believing that we’re ‘too high-functioning’ to ‘really understand’ their kids.

Adult autistics, on the other hand, have had some pretty negative experiences at the hands of various NTs - sometimes, sadly, including our own parents. We’ve been ridiculed, yelled at, condemned, beaten up, put down, manipulated or abused in various ways. We’ve been rejected by our families, thrown out of home, denied access to services, ended up homeless, incarcerated in mental institutions, misdiagnosed, fed drugs or given electric shocks. We’ve been arrested, imprisoned, and some of us have even been murdered. Many younger adults have gone through all that ‘therapy’, and are suffering PTSD as a result.

Those of us who manage to endure, or evade the worst, know our own survival is always risky. We live with the knowledge of What Can Happen. We’ve been injured beyond belief, and it often shows. To expect the most traumatised of us to be friendly to NTs is like going up to a wounded tiger and patting it on the head, and expecting it to purr.

Add in a compliant and unquestioning media, the highly efficient publicity machines of big anti-autism groups, a largely still-ignorant or pathologising medical and psychiatric profession, the routine exclusion of autistics from organisations, groups and government processes that affect us, and it’s no wonder we so often don’t interact.

And yet. Amazingly, some parents do make it through all the garbage they’re fed. And some autistics are willing to engage in dialogue with parents, to make the effort, to try to reach them. And when that happens, it’s something special and incredible.

For those of you who don’t know, I am one of the admins of a Facebook group called ‘Autistic Allies’. We are a mixed group of autistics and parents of autistic children, both on the spectrum and not. It was originally started by the mother of an autistic child, who wanted something different from the usual autism parent groups, with their pity parties, ABA promotion, anti-vaccine talk, and insistence on normalising their kids. She’d even been thrown out of some of those groups, for disagreeing with all the negativity.

Soon, other like-minded parents joined her, along with some of us autistics who were interested in working with these more open-minded parents. The group has evolved along the way, and its primary purpose now is to educate people, so that we are all empowered to go out there and change the public dialogue around autism. We are thoroughly autism-positive in our approach, allowing no promotion of ABA or anti-vax or anything else that is negative about autism. 

I feel that we are doing important work. Not all will agree, I know. But to turn the public discussion of autism around, to eliminate the negative stereotypes, first of all we need to educate and prepare each other for the storm. To build our ally base. Only then can we go out there and fight the good fight, educate others in turn, and change the public perception, and hence treatment of, autism and autistics. There is *SO* much ignorance out there. We’re very much about fighting it, in our own way.

And I think it’s a unique group. We work hard to keep it free of the various types of drama that plague just about all autism parent and autistic groups, being pretty strict on trolls, baiters and general trouble-makers of any neurology. We boot those who break the rules, and let them back in only if they promise to behave. We wield the Big Stick quite often – and you know what? We just get more and more popular! People love it! So much so, we’re now over 2000 members and still growing, and we’ve had to set up a sister support group.

A big reason for our success is that we insist that the dialogue between the two groups must be, and remain, respectful at all times. Parents must come in prepared to listen and truly take in what autistic adults are telling them. Any parent who says stuff like “that’s just your autism talking”, or “you’re too high functioning to understand my kid”, or “you don’t know ABA like I do”, will find it hard in our group!

Autistics, on the other hand, have to refrain from the kind of abuse hurling, angry outbursts and factional disputes that are sadly all too common in some of our autie groups. We know all too well that it’s not a job for everyone - many autistics have been hurt too badly to willingly engage with any NT, parent or otherwise. But those who can do it, do, and it works.

Although as far as I can tell we’re the only group like this, that doesn’t mean no-one else can do the kind of thing we’re doing. I see positive stuff happening elsewhere, sometimes, but it’s patchy, and in many cases diluted by a lot of other stuff happening that’s not so positive. 

It needs a conscious effort to choose the autism-positive approach, and engage in dialogue. But it can be done. We’re doing it, and it’s time more started doing it. Time more parents truly listened to us. Truly understood that we’re not saying what we do just to make their lives harder. Truly understood that we do know what their kid is going through, that we’ve been there, done that, and are in fact trying to help them. If only they’d listen. It’s time for them to do so.

Because when I look around at all the ‘Autism Awareness’ stuff that’s happening RIGHT NOW, even as I write, when you understand the roots of it all, and that autism ‘awareness’ all too often means autism ‘bewareness’ – ie that the message is overwhelmingly negative – you realise just how important it is to offer an alternative.

I repeat – adult autistics and parents of autistic kids need to work together. Separately, we can end up lost, alone and isolated, powerless and knowing that the world doesn’t understand us. But together, we can move mountains, and change the world.