- Quinn Dexter
What About "SEVERE" Autism [transcript]
Updated: May 16
What does "Severe Autism" mean? Who decides? What are the consequences?
This article is based on the script of the video of the same name originally uploaded in April 2022
You can watch the video by clicking on any of the images in the title or body of the text.
Hi I’m Quinn and I’m autistic.
Welcome to Autistamatic.
So it’s upon us. The time of year that most openly autistic people dread, particularly those of us who are active on social media. It’s autism charity fundraising month, or “awareness” month or even “acceptance” month if the organisation concerned has been paying attention to the zeitgeist.
Whilst there’s a lot of good intentions on display during this time, it’s also a period that sees more bullying of autistic people than any other. The work we do as autistic creators and advocates doesn’t rest for 11 months of the year. We’re working tirelessly all year round, but for the month the media interest is there it brings all the autism trolls and misguided but well meaning keyboard warriors out of the woodwork. The voice of any autist capable of advocating for themselves, let alone for others, get drowned out by seasonal autism experts claiming concern for “severe” autism.
The arguments often start over language.
We say something about being “autistic” and a well-intentioned bystander will correct us, telling us we SHOULD say “with autism” – Person First Language.
We’ll point out that the majority of us prefer to be called autistic and provide evidence to that effect and plenty of people respond well. They might tell us that they’ve been told to say “person with autism” as part of their academic study or professional qualification, or a diversity training course at their workplace but the penny eventually drops and they back off.
What starts as conflict can often be a turning point in that person’s understanding, opening their hearts and minds to the realities of being autistic, the daily struggles we ALL face and the important role of our autistic differences in shaping who we are. I’ve made friends and gained social media followers through exactly such conversations, even a few of the patrons who help make my work possible started out as someone who corrected me but found out THEY were the one who was mistaken.
Sometimes it goes badly though. Some people aren’t happy about being corrected, in fact some of them rage at our insolence. Who do we think we are to have opinions on autism?
They’re the ones who cast doubt on us being autistic in the first place or claim that we’re the “wrong kind” of autistic to have an opinion. We may be allowed to talk about our own little “high functioning” corner but not about the “severely afflicted” people they claim concern for.
But what exactly is “severe autism”? What does it look like?
Well the first thing to know is that it’s not a description that’s come from the diagnostic manuals. The same applies to high and low functioning labels. They’re not diagnostic terms, nor reflective of our lives.
Lets look at a few examples of what those armchair experts describe as “severe” or “low functioning” autism.
Quote: “What about the SEVERE autistics?? My brother is 25 and has the brains of a 5 year old!”
IQ is one of their favourites, along with the inaccurate but often cited “majority” of autistic people having intellectual or complex learning disabilities. Only about 15% of diagnosed autistic people have any kind of intellectual disability, and many of those are borderline or issued as default because being unwilling or unable to complete IQ tests is often regarded as a de-facto fail. Even so – that doesn’t make someone more autistic – it just makes them autistic AND intellectually disabled.
Tragically there’s a significant lobby within some academic circles, fuelled by the billion dollar autism intervention industry, to make “autistic with low IQ” a whole new category of it’s own, they want us to call “PROFOUND AUTISM”.
Seizures get brought up a lot too. Whilst it’s not “common” there’s a slightly higher chance of an autistic person being epileptic. That would make them autistic and epileptic – not severely autistic.
They’ll mention incontinence frequently. That’s a non-starter too and enough of a red-herring I did a whole video on the subject.
Speech is the big one though. An autist who doesn’t speak, who speaks in echolalia or apparent riddles, uses a limited vocabulary or who only uses speech some of the time? They MUST be severe, surely?
The reasons for an autist not speaking are many and varied. Some of us are afraid to speak because when we’ve tried, we’ve not been understood. Some lack confidence and some don’t see the point unless we’re in significant need. Some of us need time to process our answers so may choose not to speak until we’re sure of what we want to say, which may be only a few words. I’ve met autists who are highly eloquent with written words but never or rarely speak with their mouths and I know others who are unable to use mouth speech because of additional disabilities such as apraxia.
The label of “severe autism” actually CREATES barriers to communication in itself because it lowers expectations and has even prevented communication because alternatives haven’t been provided by someone in charge who’s decided there’s no point.
So what about the behaviours we DO associate with autism. The ones we see bullet point lists of on medical websites or news stories about autistic kids? What about meltdowns, shutdowns, elopement and self injury. If that’s not “severe”, what is?
They’re mainly stress events.
Meltdowns and shutdowns are DIRECTLY related to stress. Both are involuntary reactions to distress beyond our ability to cope. It can even be stress that’s built up over time and we’ve just been tipped over the edge. Self injury can be related to the same or a side effect of another co-occurring condition like dyspraxia. Elopement can be a sensory issue – getting away from sensory stressors or seeking sensory stimulation, or it may be related to a specific monotropic interest. In many cases it is literally running away from pain.
“AHA! So it IS because they’re autistic then!”
You’re still missing the point. Granted if they weren’t autistic they may not abscond so readily but why are you blaming the autism and not the stress that causes the “behaviour” you’re concerned about? Have you never heard of an NT kid that ran away from home or got caught somewhere they shouldn’t have been?
If an autist leaves unexpectedly because they’ve been put under duress so who in their right minds would blame them? Is there something inhuman about avoiding unnecessary pain or aggravation? You may not be able to register what’s causing their stress or pain, but it’s there for them all the same.
If I call you a “d’blok” or a “p’taq” you’ll probably frown at me and wonder what I was on about, but if you spoke Klingon you’d likely be offended.
When you’re not autistic yourself you don’t KNOW what might be causing an autist discomfort or might be attracting their attention because your mind doesn’t speak the same language of thought as theirs. You might as well be trying to read Shakespeare in it’s original Klingon for all the sense it will make to most non-autistic minds.
Give us the opportunity and the tools to communicate it to you though, and you might find out, but you might also have to be patient and learn a new kind of language.
What most people describe as “severe” autism is just autism with complications and sometimes those complications are things that most people can’t quite get their heads around.
Remember the autistic triad I keep mentioning? Senses, Emotions and Veracity are the key things that should be at the front of your mind whenever you try to understand autism. Whatever the unidentified factor is that makes you think “severe” is either a secondary condition like epilepsy or a learning disability, or it’s something you don’t understand yet.
You may think I’m a decent communicator on the whole, but I went through decades of clinical depression before I was able to get it across it to a doctor. I was punished as a child over my fussy eating habits and for “making myself sick” all the time. My dentist used to berate my mother for letting me eat sweets all the time, which she denied and then punished me again for scoffing candy behind her back.
It wasn’t till my 30s that I managed to explain myself well enough that a doctor sent me for tests that showed my stomach doesn’t empty properly and tissue erosion consistent with having had acid reflux all my life. It messed up my ability to eat, influenced what foods I chose and the constant flow of stomach acid going the wrong way had eaten away at my teeth. However we try and whatever method we use to communicate, sometimes autistic and non-autistic minds just can’t seem to transfer information to each other effectively. Some things are so different a non-autistic mind may never fully grasp them and I know there’s aspects of the NT mind that baffle most of us too. We have to take your word for it that those things are “normal” for NTs ‘cos there’s more of you and you say so.
Right now there’s someone out there with their hands poised over the keyboard ready to type out their comment
“That’s alright for you mate, YOU’RE HIGH FUNCTIONING SO YOU DON’T KNOW!!!!”.
I’ll save them the bother and reply to them now.
You’re right AND you’re wrong. I do manage to function in society in a way many autists don’t. I have a job, I’m happily married, I do this… I get by. I have days where I struggle though. Days when I’m not at my best and nobody makes much sense and the voices blend into one, the noise keeps getting noisier and that light keeps buzzing and dazzling me, and my collar’s too tight and oh my god I’m feeling dizzy and my voice is raising, I’m shaking...
...and I always forget the next few minutes after that.
You call me high functioning because I’m autistic but I don’t have something else complicating it. Not something you can see.
If some people have their way, then a few points less on my IQ scores might let them call me “profoundly autistic”. If I’d hidden in the woods more times in childhood or suffered more unbearable sensory stress or maybe if I preferred to speak with an AAC machine, or in writing or in makaton? Would you have me down as severe?
High and low functioning labels don’t help autistic people, and those of us written off as “severe” could live much better lives if our co-occurring conditions are properly treated or accommodated and our communication understood.
There is no mild and severe end of the autism spectrum, no profound autism and certainly no high and low functioning. Take away any additional disadvantages and disabilities, take away the stress brought on by a world that can be an overwhelming mass of too much information, take away the misunderstandings, the miscommunication, the miscarriages of justice, the unfair disadvantages, the pity, the sideways glances, the jokes and the jibes and the flawed assumptions over our feelings, desires, intentions and competence.
Take all that away and all you’ve got left is a person with an autistic mind.
Who senses differently, feels differently and has a very strong need to be honest with the world.
You can watch the video by clicking on any of the images in the body of text. (c) Autistamatic 2022