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.