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.

A Manifesto of Self-Worth For Autistics

I don’t know who in the autistic community needs to hear this, but I am telling you now –

YOU ARE WORTHY.

You are worthy of your space here on this planet, of being treated with respect, and of treating yourself with respect, no matter what your situation, or your feelings, or how others are rating you or treating you.

Because autistics don’t have to be perfect, or anything close to it, to be worthy of that. Nothing we do, or say, or are, or have experienced, matters beside this fundamental fact. It matters only that we’re human, and we’re here.

So it doesn’t matter if you make mistakes in life. Even a lot of mistakes. Even if it seems you do nothing but make mistakes. Or your mistakes feel like earth-shattering ones you’ll never recover from, or you’ve suffered severe social rejection/isolation/bullying/ridicule/whatever because of them, or for your stims, or for ‘just being weird’ either.

It doesn’t matter if you have public meltdowns so bad that even the memory of them makes you cringe, and you’re embarrassed to go back there or see those people again, and often ‘burn your bridges’ as a result.

It doesn’t matter if you ‘can’t get your act together’ (especially as mostly what people mean by that is that you should stop being autistic), or if it always feels like your life is falling apart, or that you never got it together in the first place.

It doesn’t matter if you’re unemployed, or homeless, or you’re in some other horrible situation that you can’t escape, because you simply don’t have the skills or emotional resources or practical support to get out of it. Or you have gotten out but still suffer from PTSD or other mental unwellness because of it, or you feel ashamed of having been that, or been through that.

It doesn’t matter if you need daily help to move through life, and nor does it matter if you don’t have and can’t get that help, so that everything feels like a total mess, or the help available is demeaning and patronising or even abusive, or just not what you actually need.

Nor does it matter if you’re not oral-speaking, or only intermittently so, and you’re deemed ‘low-functioning’, or you’re incontinent/faecal smearing/head-banging/whatever, so no-one expects anything of you, and treats you like a child or like you have no mind of your own.

It doesn’t matter if you are or have been incarcerated in an institution or prison or mental health facility, for whatever reason, and you’re ashamed of that, and feel that you must be a ‘bad person’.

It doesn’t matter if you’re poor, or physically disabled, or old, or single, or don’t fit into the whole cis-hetero thing, or people constantly tell you that you’re ugly, stupid, etc, or that you ‘deserve’ the bad treatment you get.

It doesn’t matter, even, if you can’t love or even like yourself, or you maybe really hate yourself, or feel you lack the qualities that would render someone likeable or loveable.

Ultimately, none of that matters. You’re still worthy anyway.

No matter your situation, no matter your ‘issues’.

Because you still matter.

You still have worth. You are still worthy.

You are still worthy.

YOU. ARE. STILL. WORTHY.

And, at the risk of sounding like I’m belittling other liberation movements and their very real struggles – which I’m definitely not – ultimately, it doesn’t matter how many other minority groups you belong to either, because YOU ARE NOT ‘LESS THAN’ because of that, because of your oppression being intersectional. You are STILL worthy of better than whatever bad treatment has been handed down to you because of all of it. ALWAYS.

Because you deserve better than what you’ve had up till now. All of us do. All of us autistics deserve better, all of us are worthy of all the rights other human beings can claim, as well as the right to freedom from the oppressions particular to our lives. Most especially, you are worthy of being counted as human. Even when others do not and will not count you as such – in fact, most especially when that happens.

Because those attitudes, those people, really don’t matter either. Not when weighed against the fact that you – all of you, all of us - are most emphatically still real, still human, still entitled to being treated with decency and respect, still worthy of the space we occupy and the air we breathe, still worthy of people’s time and attention, still worthy of a life where we can openly and freely be our authentic autistic selves and live our lives the way we want and need to live them, still worthy of the right to hold our heads high and be proud of being autistic.

So all that other stuff doesn’t ultimately matter, when it comes to our demanding our rights.

And these rights are non-negotiable, for each and every single one of you. No exceptions. You don’t have to prove anything, live up to anyone else’s standards, become what they want you to be, in order to qualify. Your existence is enough.

Because you’re worth it. You’re worthy of it, of those rights. You all are.

And I’ll say so again and again, for anyone who needs to hear it, even if you’re hearing it through your tears, through your rage, through your fear and pain, through your shame and self-hatred. Because – I repeat - you don’t have to do or become anything in particular to be worthy of the same rights and freedoms that others have.

You just have to be you. Autistic, and human.

And that’s enough.

Never forget it.

How To Dehumanise Autistics

Recently, I’ve seen a couple of items floating around social media either proposing that autistics should be killed, or that autistics and those who have autism running in their families should refrain from reproducing, to rid the world of the ‘scourge’ that is us.

Now, I don’t know if these are some horrible kind of satire or the work of (possibly fake) trolls, but it doesn’t really matter. Because it can only work as satire, or trolling, because there are plenty of people out there who DO have these attitudes, for real, even if they’re not usually so blunt about it.

These posts could be called ‘How To Dehumanise Autistics 101’. Here’s how you do it. (All italics are actual quotes from the above mentioned posts, some slightly abridged.)

1) Tell people that we are lacking in basic humanity.

Describe us in language that will frighten people who don’t really know much about autism. Tell them that we are not [in possession of] a fully aware sentient controlled mind, that we’re mental invalids, who are incapable of participating in the kindred spirit of human connection, that we have a deficiency of the essence of feeling, an inability to consider empathy, or that autism is the most inhumane, most destructive and dehumanising condition, in short that we’re the ultimate monstrosity.

2) Create an alarmist picture of ‘typical’ autistic behaviour.

Paint us as mass shooters blowing the brains out of kindergartners, or becoming stalkers, or simply as terrible things who tear our families to pieces, leaving our parents’ lives in ruins, who remain forever incapable of toilet training (what is with these neurophobes, that they always go straight to the faeces?), or the cause of public disturbances, or just claim that each of us cost the world a million dollars of medical care. A big part of much of this, of course, is assuming that we’re all low-functioning human pets, though even THAT picture is a distorted and incomplete one.

3) Insist our lives are ‘miserable’.

Tell people that we are doomed to suffering, spend our time banging [our] heads on the floor (or filling our pants, presumably), live lives of constant pain and hate [ourselves], and that those lives are incomplete, missing the most important components of humanity and sentient feelings. You might even claim that autistics themselves would like it if nobody would again suffer from the condition [we] have.

4) Suggest or even state outright that the world would be better off without us.

The bald advice of these people is to leave [us] by the riverside as babies, or that anyone on the autism spectrum or with… relatives with autism.. needs to be discouraged from reproducing. Because if you carry autistic genes… [they’re] not worth passing on. That we should dare to dream big, that we owe [it] to the future, in fact, to wipe autism from the face of the earth.

Never mind that much of this is contradicted by the evidence, eg that autistics actually have too much empathy, hyper-sensitivity, and all-too-aware minds. Never mind what should be obvious, eg that a kid banging their head on the floor is either in pain or in an extreme of rage and frustration. Never mind that most of us do not consider our lives, or ourselves, or our minds, ‘incomplete’, or ‘lacking’ in anything but acceptance and understanding from others. Never mind even that much of our ‘pain’ is actually caused by that lack of acceptance and understanding. Yes, even the so-called ‘low functioning’ (a label that is essentially meaningless in practical terms anyway). The attitude of those around us is *THE* biggest single indicator of the quality of autistic lives. Period.

Actually, never mind common sense or facts at all. Just go for the jugular, and fill people up with so much fear of us that they’ll agree to anything to get rid of us.

That’s how you dehumanise autistics.

We have been abused, beaten, denied basic human rights, had our intelligence discredited, been tortured with ABA, had bleach or turps or other horrible things shoved up our bums or down our throats, had our authentic autistic selves forcibly or even violently repressed, and much, much more, including sometimes being killed, because of attitudes like this.

I suspect that people like this haven’t actually met any autistics, even those who would be considered ‘low-functioning’, they’re just going by some mental image of ‘what an autistic is’. They certainly haven’t met me, or any of my friends. They haven’t seen their beautiful souls, their depth of compassion, their empathy for the underdog, their ability to create communities and support each other (that ‘kindred spirit’ it’s claimed we don’t have), their joy in their favourite interests, or helping others, or simply in small things like a drop of dew in a flower.

But I repeat – these people are have only *publicly* stated what many others are thinking or feeling, without much reflection. The media, the ‘martyr/warrior mommy’ movement, and Certain Big Autism Organisations who don’t actually include us or even attempt to understand us are largely responsible for this, but the attitudes are rife in the general public as well.

It’s these attitudes, not autistics, that I believe should be ‘left by the riverside’, and ‘wiped from the face of the earth’. Enough with the dehumanising. We’re people. We’re human. We’re here to stay. And we deserve better than to be treated this way.

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.