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.

All Autistics Are Traumatised

All autistics are traumatised.

This is the conclusion I’ve come to, after over ten years of being in the autistic community, listening to people’s stories, doing research, reading what parents of autistic kids have to say (and how they’re so often misinterpreting our behaviour), commiserating with our problems and woes, and thoroughly absorbing the general state of autistic lives and psyches.

We’re constantly being overloaded, stressed out, misunderstood, rejected, ridiculed, having our voices or our non-verbal attempts at communication ignored, having our intelligence denied or used as a putdown or an excuse not to give us services we desperately need, hearing ourselves described as ‘defective’ or ‘diseased’ or ‘damaged’, being excluded from schools, social gatherings or jobs, being bullied/beaten up/abused by family members or partners or schoolmates or so-called ‘friends’, with many of us ending up unemployed, poor, homeless, in mental health care or jail. We’re pushed to our limits and then over them. Constantly. Repeatedly. And then we’re told that “we’re not trying hard enough”, or that “we’ve brought it on ourselves”, and so on. The list is endless, you all know what we’ve had to endure, both individually and collectively.

There are undoubtedly some very young and/or lucky autistic kids with lovely, accepting parents out there, that haven’t yet been traumatised, but sooner or later, they will meet up with the circumstances that cause that trauma. They’ll be yelled at in a supermarket, encounter an unsympathetic teacher, get bullied in the playground or street, get overwhelmed in a mall and have their reaction misunderstood, (over)hear someone call them horrible things on TV or during ‘mom chats’ over coffee… and it will start.

I believe such traumas are inevitable, given the current public attitudes to autism and autistics. The only things that differ are to what *degree* we’re traumatised, and what our individual reaction to it is, at any given point in our lives.

But – and here’s the ghastly bind we’re in - too many people look at our traumatised state: the meltdowns, the fleeing, the banging our heads on walls, our extremes of emotion, our physical and sometime verbal lashing out, our problems in school or social situations or public places, or our co-occurring conditions or mental health problems, etc, etc, etc, and think/assume ‘Oh, that’s because they’re autistic, it’s an intrinsic part of their being autistic, therefore there’s nothing that can be done about it, look at them, they’re a huge problem for society, wouldn’t it be better if we could get rid of them/their autism/ensure more autistics aren’t born?’ And/or they see us only as ‘problems to be managed’ – something that tends to increase our trauma, not diminish it. With this attitude, about the best that can be expected is that they’re ‘nice’ to us, ie use us as inspiration porn.

This is so endemic, it even affects how we’re diagnosed. The indicators of our trauma are so engrained in the public and professional minds, they’ve become ‘diagnostic criteria’, so that kids or adults who don’t display such behaviours can either lose their diagnosis, or never get one in the first place. Even if our not displaying it is due to the pressures of ‘normalisation’, where we’ve been taught (or taught ourselves, in some cases) to hide our autistic traits and suppress those ‘symptoms’, at the expense of our long-term mental health. (Ie hiding the results of our trauma actually causes more trauma in the long run, which should be a no-brainer, but hey, you know, we’re not supposed to be human…)

But what if we were NOT constantly traumatised?

What if our autism was accepted from the beginning of our lives, and our families, childcare workers, teachers, etc, were educated about autism by autistics, and we were properly supported and accommodated through school, higher education, and into work? What if doctors, other professionals and autism organisations were truly educated about autism, and gave parents a positive view of autism, and referrals to autistic organisations, instead of all the doom-and-gloom stuff?

What if we were not assumed to be lacking in intelligence because we can’t use oral speech, or whatever speech we do have is limited, or ‘babyish’ sounding? What if we were taught to use sign language, cards and/or AAC systems right from when it first becomes obvious that we’re struggling with oral speech? What if we’re standardly given OT and various aids as soon as it’s seen we have trouble with movements? What if we were not laughed at because we’re adults who can’t tie our shoelaces or button our shirts? What if it was considered okay for adults to always wear polo- or t-shirts or slip-on shoes, and need help to cook/shower/whatever?

What if NT kids were taught social skills for interacting with us, while we were taught ‘this is how non-autistics think and feel and act, it’s up to you how much you want to do it’, rather than being effectively told that our way of being is ‘wrong’ or ‘defective, and forced into unnatural styles of interaction, simply to hopefully (and usually unsuccessfully) avert bullying and social rejection? What if NT adults were given awareness training too, in workplaces where autistic people work, or because they’re likely to come into contact with us in a professional situation, eg, cops, nurses, teachers, paramedics? What if it were simply a regular part of their training?

And what if supermarkets and malls and other shops had ‘quiet hours’ all the time? What if public ad campaigns about autism, similar to those about mental health, written by autistics and/or their allies, were regularly broadcast on TV? What if we had mentors to help us negotiate both social scenes and acquire practical skills, from getting our first job to getting a mortgage? For that matter, what if it became accepted practise for us to be considered for a job on our CV, references and a job trial, rather than be put through the torture of interviews, which we tend to fail?

I could go on, but you get the idea I’m sure. What if we weren’t being constantly traumatised? What if the whole public image of autism and autistics was turned around, and people actually accepted us as we are, and not only stopped abusing us, but gave us the support we really need? What kind of autistic would emerge? Who and what would we be?

I think we could be amazing. Actually, I think we already are, we just need the world to stop constantly dumping a tonne of excrement on us. Because if they did… we’d be even more amazing.

The 'Bogeyman' of the 'Low-Functioning'

It seems like every time an autistic advocate pops their head above the parapet and objects to some maltreatment of autistics, especially autistic children, somebody comes back with “but-what-about-the-low-functioning”, dragging in things like poop-smearing, meltdowns and head-banging. “You’re not like these kids, you don’t understand!”, they exclaim, again and again. As if we’ve never heard of such things, or done them ourselves, and as if ‘those’ autistics are a different species.

The ‘low-functioning’, in effect, have become the modern bogeyman. The stereotype that gets trotted out, time after time, cast as “the ones who really do need a cure”, and dragged out as defense against those of us who oppose things like bleach enemas, turpentine drinks, ABA, GcMAF, chelation, hyperbaric chambers and the like as false ‘cures’ for autism.

But I say casting them as this bogeyman is nonsense, a chimera, a false construct.

Why? Because –

1) It fosters a division that isn’t actually there. Functioning levels are actually meaningless. There aren’t any autistics, even adults, who are completely ‘high functioning’. Many of us were like ‘those kids’ when we were young - and some of us still are. But regardless of our apparent ‘functioning’, we can still totally support the neurodiversity perspective.

(There’s also a hidden threat in this - any of us, if we lapse in our ‘high functioning’, could also be subjected to these treatments – and sometimes have been. So basically, the underlying message is “let us do what we want to these kids, or we’ll do it to you too”.)

2) It presumes that the ‘treatments’ will actually help them. I’ve written about ABA before, it’s compliance-training, not a ‘cure’. And then there are the bleach enemas and so on. How anyone can think that these are a good idea to do to anyone is beyond me. How they think it’s going to ‘cure’ a neurological condition is even more perplexing. Yet people do so, causing huge physical and psychological harm to the children. Then they credit any advances the child makes to these bizarre and dangerous ‘treatments’, as though autistic children never grow and mature on their own.

3) It presumes that ‘extreme behaviours’ happen ‘just because’ of autism. We know this to be not true, but even when we try to explain the possible reasons for the behaviours, and offer advice and support, we’re often ignored or derided. Meanwhile, the autistic child/ren in question are indeed suffering - from lack of understanding, lack of supports, sensory overload, social stress, bullying, harsh ‘treatments’, falsely low assumptions of their intelligence, rejection, even institutionalisation and electric shocks… the list is a long one.

4) It presumes that the ‘low functioning’ are somehow different - to other autistics, and indeed other human beings. It casts them as virtually sub-human. They can no longer ignore the humanity of ‘high functioning’ autistics who speak up (though some still try), and so they focus on this group instead. But not only are functioning levels nonsense, as I’ve already said, I’ve read quite a bit of the writings of the ‘severely’ autistic, and I’ve never found anything in these that indicates their brains are radically different to other autistics. The differences are a matter of degree, not of kind.

5) It assumes it’s okay to treat even the ‘different’ like this. This is the crux of it really. Ultimately, it’s not even about whether the ‘low functioning’ really are separate/different from others, or whether the treatments prevent the ‘undesirable’ behaviour. It’s that it’s NOT OKAY to treat ANYONE like this. Ever.

It’s not okay to treat people like dogs, and browbeat, coerce, and manipulate them into submission. It’s not okay to shove bleach up their bottoms or down their throats, force them to drink turps or seawater, inject dodgy blood products into them, starve them with severe diets, give them electric shocks or subject them to chelation that leeches vital elements out of their bodies. It’s not okay to put handwash in a kid’s mouth for stimming, or forcibly hold their hands down till they stop flapping, or anything else that forces them to suppress their very way of being in order to be ‘acceptable’.

None of this is okay. And saying that it is okay because someone is a ‘low functioning’ autistic, is a breach of the human rights of ALL autistics. If even one of us is subject to these things, we are all at risk. And we know it. Even if we don’t think about it consciously, deep down we know it.

This is why we protest.

This is why we say ‘no more’, and ‘nothing about us without us’.

This is not just about preventing abuse, but about demanding our human rights.

So enough with the bogeyman. Enough with trying to scare us and parents of autistic children, enough with trying to silence us, enough with a false separation between ‘them’ and ‘us’, enough with casting the very children who most desperately need acceptance and understanding and support as some kind of demon or sub-human.

ENOUGH.

NOW.