“Some people have an identity. I have an alibi. I have a shadow self.”
I’ve been writing a fair amount of training material recently, for myself and for several other organisations and it’s had me questioning what I want people to take away from them. Knowledge about Autism obviously, but also the need for people to have that light-bulb moment, when I frame things in a way that tips them into a paradigm shift; so that metaphorically, as you slide the Neurodiversity paradigm in one ear, you see the pathology paradigm drop out the other side.
So much of what I and so many other Advocates talk about: Language, Masking and Burnout, the history of Autism, the diagnosis, the near constant invalidation, this need for people to have a paradigm shift at all about Autism; all leads, via a twisty, winding path through the undergrowth to one thing:
Before you begin…
This article is a deep dive into the importance of Identity and how the medical model of Autism and societal views towards Autism have a huge negative impact on Identity.
Someone who proofread this before publication asked me who the target audience is. My answer was everyone. Autistics, parents, professionals – anyone who cares to read and wants to understand why Autistic people are being broken upon the back of the wheel of society. I’m talking to all of you. But especially you. The person that’s reading this right now.
As Kitty Bull, in her article on Spectrumy entitled: “Why talk about Autism?” States perfectly:
“In this world it can feel like we have nothing to offer to make things better. Like many bad things are happening that are outside of our control. But if we know we are autistic, we have something pretty world changing to offer, simply by living without shame.
So stand alongside the children who have no say over whether they are publicly identified or not. The children who are currently experiencing the sympathy, the side eye, the misunderstanding. Who are experiencing people expecting less of them because of their diagnoses. Who are going to therapy to learn to be less themselves. Who are thought of as vaccine injuries and subjected to bleach cures. Who are talked about as less than human.
Think about all the times you heard people talk about their little loved ones as a tragedy.
They have no choice. We do.
Stand up and say, this is what it means to be me, and these are the things I need to survive and survive well.
These are the things I find hard, these are the things I find easy, and these are the ways I was harmed.
This is what autism means to me.”
As a disclaimer before you start this, going through the article I’m going to assume that there are certain terms and themes that you are familiar with around Autism and Neurodiversity, such as identity, Autistic Masking, Autistic Burnout, invalidation, Person First Language and Identity First Language, the impact of Society and the medical model on Autistic people; and that you already have a basic understanding of them at least.
If you aren’t familiar with these themes then it might be useful for you to read the following articles first:
How to Hide your Autism – An introduction to Autistic Masking
The Mess of Autism – A brief look at the history of Autism and the confusion around diagnostic labelling
An Autistic Burnout – An investigation into the short and long term impact of Masking on physical and mental health
Responsibility: Autism and a legacy of failure – A look at the impact of a lack of knowledge and understanding of Autism
I am not OK – A deeper look in Autistic Masking and it’s impact for #TakeTheMaskOff
Masking: An act of resistance – A look at the person and political aspects and implications of taking the Mask off
We are not OK – Shared voices from across the Autistic community on the impact of Masking on mental health
An Autistic Invalidation – A study of the psychological and emotional impact of society and the medical model on Autistic people
When I talk about the Neurodiversity paradigm, some people get confused and assume that switching focus from deficits to positivity and difference means that disabilities are denied. This is not the case at all, as presented by Emily Paige Ballou, in her article in The Thinking Person’s guide to Autism: “What the Neurodiversity Movement does – and doesn’t – offer”
This is long.
There are also a lot of references and citations.
I’ve broken it into chapters so it can be more easily digestible, so please do take breaks, take your time to process this and if there are any ways i can make this easier to consume, please let me know.
I hope you think it’s worth the effort.
Whose afraid of the Big Bad Wolf?
The impact of society on an Autistic person’s identity is enormous, often to the point where it is so common for an Autistic person to work so hard and for so long to conceal their true nature, that when the time comes that they can no longer keep it up, it forces them into a state of non-persona; the fear of the unknown identity, or what they perceive as the lack of identity underneath, is too overwhelming.
It is easier for some Autistic people to Mask themselves into an early grave, than it is to step off the cliff and fall into who they truly are.
Because they just don’t know.
Autism is who we are.
And me saying that is going to terrify a lot of people…
An Autistic Identity is integral to our well-being, physically and mentally, to our whole selves. Yet we are made to feel as though we have to suppress that. To go further we are actively told that our identity is wrong and broken. So we Mask and create and build new ones, false ones, imperfect replicas of ourselves.
The constant invalidation we go through all our lives, as I discussed in ‘An Autistic Invalidation‘, is eating away who we are, reinforcing endlessly the Masking.
So how much of the stripping away of our identity is driven by fear belonging to others?
Humans are funny creatures. We’ve evolved so far yet are still driven by the basic instincts that drove us as apes.
Hunger, thirst, reproduction, fear.
We live in a world that is driven by those four things.
But the biggest driver of them is fear.
Fear of having the first two.
Fear of not being able to manage the third.
And, ironically, fear of the last. Fear of fear itself.
Fear of the oppressive natures of the governments we live under, where control is being exerted more and more; who tighten their grip in response to poor decisions, money, and the influence of giant conglomerates, all of whom are driven to power by fear.
Fear of being powerless.
Fear of terrorist attacks; terrorists created by those very same governments and their decisions; of whom those governments encourage us to be fearful.
Fear of drowning under a sea of immigrants, who flock to us for safety as their countries’ crumble because of the decisions of those self-same governments; of whom those governments encourage us to be fearful, that they’ll rape us, breed us out, take our jobs and make us live their ways.
We fear for our jobs and how we will put food on the table.
We fear for our children, who they speak to, who they will turn out to be, of how they will or won’t survive without us.
Fear that we don’t look good enough, or young enough.
We fear for our environment, the poisoning of ‘our’ world, the self-destructive cycle we are trapped in that’s causing it.
We fear for our very futures.
We fear everything.
As much as we have evolved, humanity is still a bunch of anxious apes huddling around a fire in the darkness.
|Image Description: A stereotypical caveman staring at a fire. Text reads: “This may not be a true representation of a caveman”|
So what does this fear do?
We’re scared, a deep rooted fear that crawls up the back of our necks and makes our crocodile brains snap and snarl.
We’re in the dark, we’re cold and we shiver.
So we light the fire, we huddle together.
We seek safety in flocking together.
We seek control.
In another way you could look at it as schooling (not shoaling, there is a difference). Fish who pull together in the habitual, sub-conscious knowledge that if they come close and tight, then only a few of them might be snatched from the edges and the majority will be safe.
We fall into uniformity. We act the same, we dress the same, we follow the same trends, we do things the same, we expect others to do the same, we categorise and narrow our thinking because it feels safe to be like other people, it feels safe to be protected by the herd.
We give ourselves the illusion that we’re not doing this, we delude ourselves that we’re in control. We allow ourselves faux choices – Apple or Android, Mac or PC, we follow a different sports team, we buy a different car, we wear different clothes.
They aren’t really choices though, they are variations on the same thing. Illusions to make us feel better. To keep us safe within the herd or school.
Everyone knows about Fight or Flight (and the less often spoken about option of freeze), the human reaction to stress and fear.
Mostly that reaction is good, it’s positive generally, because it keeps us safe from harm.
Fear keeps us moving, it keeps us developing.
But, in my humble opinion, we’ve reached an evolutionary point where it’s causing a real problem.
For a long time now the only thing that Humanity has really had left to fear is itself and the consequence of it’s own actions.
On our little ball of blue and green we have conquered pretty much everything. There might be creatures with bigger teeth than us still wandering the seas and the plains that cause us problems, but ultimately we’re the kings of the hill, we’re the dominant species on the planet.
So when fear is one of your biggest drivers and there is nothing left to fear, where do you turn?
The only place you can.
We look at each other and find something to fear.
The biggest we thing we fear in each other?
The fear of difference
“Prejudice is an antipathy towards another person based upon pre-existing belief or opinion, resulting from some form of social categorisation or membership of a particular group. It relies upon a stereotypical characterisation, or generalisation, of others, which is not grounded in evidence or experience. In this sense, prejudicial views are not based upon rational judgements and are inherently unjust.
“In some cases, the views held about the members of another group are so exaggerated and misconceived that they become almost laughable. However, it is easy to dismiss them as the product of ignorant and closed minds as they can often be part of a social system which creates a hierarchical order, justifying discrimination in order to preserve the position of the superior group.”
Disraeli’s quote in the image above (I added the Stormtroopers in reference to the superiority aspect) and Cantle’s both allude to something incredibly important in this discussion. Although both were writing about about differences in race, the sentiment is really applicable to any difference: if there is a fear response it leads to hierarchical discrimination and dominance.
Difference is threatening to us, therefore it is something to be feared.
This is evidenced by wars driven by differences in religion.
It’s evidenced by the treatment of people who have the audacity to look differently, speak differently or act differently.
Slavery and subjugation.
It’s a thing that rolls back 50,000 years or longer. It’s still the most prevalent theory (subject to change) that the reason there are no Neanderthals around anymore is because they were different and a threat, so humanity sought to subjugate and eradicate them because of that.
They weren’t part of the herd.
For the benefit of this particular article amongst the different groups and minorities experiencing similar struggles, for the benefit of me, who falls into this cohort, there are a group of people who are different, very different who I’d like to focus on. Heading in the same direction maybe, but doing it in a very different way.
You know who I’m going to say…
And for Autistic people, the application of Disraeli’s and Cantle’s words apply.
Autistic people are different and difference in this case = threatening = fear = hierarchy = discrimination = dominance.
We stick out.
We disrupt, we cause PROBLEMS.
The fears that drive the main herd, do not drive us.
We move differently, we move ahead, or fall behind.
They trip over us.
Or at times we move right alongside each other and they turn to look at us and we spook them.
All of this is metaphor of course. On a conscious level this is not happening, but on a subconscious one and massively on a social level, it clearly is.
The parallels between what is happening now to Autistic people and other Neurodivergencies, with other civil rights movements are enormous, in some cases it’s literally a matter of transferring one label for another. The Trans community are a really close parallel, as is evidenced by Trans activist Sarah Ellis’ article ‘An Invalidation argument‘, which in turn reflects my own article ‘An Autistic Invalidation‘
Our civil rights, our identities, our lives, are under threat.
Simply because of difference.
Difference scares people. Autistic people are different.
It explains so much.
It explains why everything about us is described in medical, pathological or behavioural terms.
It explains why there is this overwhelming need societally to cure and change and fix us.
It explains why we are kept apart from our own narrative and only allowed to dictate our lives and our futures through tokenism, or as research subjects – where we are seen as not competent enough to make decisions for ourselves, with ‘experts’ and family members views given precedent over our own.
This fear of difference amongst society shows why Autism is still seen, consciously and subconsciously, as a childhood condition and in it’s eyes makes Autistic adults into Peter Pan versions of ourselves. We are looked at as though we never grew up, that we are incompetent, that we work on childhood level emotional intelligence, that rainbow coloured jigsaw pieces litter the path behind us – because then we are manageable and controllable, we’re reduced to children so that they fear us less.
It explains why Academics, many of whom are Autistic, hide it, because they know that the knowledge of such will only undermine themselves and their work.
It explains why an entire group of people – a huge group, can go their whole lives being invalidated and have their identities forcibly removed from them and nobody really cares.
So how do we, as Autistic people, become an accepted part of the herd?
How do we get that herd to expand out so that instead of being isolated, instead of having to stand outside of it, or inside alone, we’re embraced and listened to?
What do we do to have our differences accepted?
Because it fought to be there.
It’s not completely accepted.
From a Western cultural point of view, anything other than white and straight is still largely seen as ‘abnormal’.
What is ‘normal’ is that it’s still vaguely acceptable for everyday people to think, say and do horrific things about and to People of Colour, people of Eastern heritage, Gay people, those with gender dysphoria, people of religions other than Christianity, women, disabled people and so on and so on- and we still have this hierarchy of privilege with rich white men at the top and everybody else scaling down underneath.
Self-segregation seems to be a naturally occurring thing to humanity. We divide ourselves by countries, by culture, by race, by wealth and so on and so on, but it’s how those segregated peoples come together when they need to is a measure of how diversity works.
So there are aspects of diversity in our Human herd, of which some are accepted more than others and at the bottom of that list are the minorities, like Autistic people.
Forced Segregation exists for those of us who cannot Mask and hide within Society. It is a genuine thing.
So at the moment, for us, it’s a choice between hiding within the herd or not being in it.
Even that isn’t a choice that most of us actively make – as the act of Masking often becomes subconscious and is enforced upon us.
Forcing a paradigm shift
In order for things to change, through the actions of Autistic people, three things have to occur.
The first is that if you follow the life cycle of any other civil rights movement, you’ll see that the answer lies in individuals sticking their head above the parapet and inspiring others to do the same. Everybody delivering the same message until it finally sticks.
This follows the concept that the more people repeat the same thing over and over, the more likely it will slowly sink into the public consciousness, meaning that people become more acceptable to it.
This sticking out is ultimately announcing yourself to the herd – identifying that you are currently not part of it, but want to be if the terms are right. More and more Autistic people and our friends and families need to stand up in whatever way we can and shout the same message.
It always boils down to the same three things: Agitate, infiltrate, educate.
The second thing that needs to happen is that we need to understand why we are in this situation in the first place, why is our difference wrong to the rest of the world, why do they think the way they do about us?
The narrative against Autism is incredibly negative.
We live under the pathological paradigm – driven with the aim of change and fix.
At the moment the only way we can be accepted into the herd, is to be like the herd. We need to break that paradigm.
The change and fix paradigm needs to be changed and fixed.
If we break it, we need to fill the vacuum and replace it and this is where the Neurodiversity Paradigm comes in.
Shifting from a deficit model to a difference one, changing from viewing difference as something which is negative to something which should be celebrated, re-frames the whole way of thinking towards it. Automatically, the view of needing ways to change and normalise are shifted towards thinking about ways to support and offer equity.
Doing this reinforces the need to address people as accepted Autistic individuals, with different needs and different co-occurring conditions, where under the current spectrum/levelled pathological model, people are excluded from supports based on the external opinion of whether they are high or low functioning.
The third thing is that more and more Autistic people need to be encouraged and taught to embrace who they are.
The third thing is the Autistic identity…
Who are you under the Mask?
|Image description: Horizontal lens flare across the centre of the image, with text above reading “To an Autistic person our very human existance is seen through the lens of Autism.” Text below reads: “How can we not be defined by it?”|
Sometimes the most dangerous thing we can do is to separate ourselves from the herd.
To take off our Masks and expose ourselves. This was covered quite comprehensively during the #TakeTheMaskOff campaign in the summer of 2018. Exposing who we are can lead to bullying, isolation, abuse, mockery, exclusion all because people are afraid of the way we act, the way we talk, the way we do pretty much everything.
But if we do nothing, then the negative narrative continues. It becomes then a choice between continuing to hide and self-protect ourselves, or taking the leap to expose ourselves for the wider community’s benefit ,based solely on thinking about the future; thinking about the lives of our Autistic descendants.
I don’t want my children or grandchildren living the lives that we lead now.
Who we are on the inside, what our identity is, is so important. Yet for many Autistic people, the removal of the Mask is something that generates a fear response – what if we take off the Mask and there’s nothing and nobody underneath?
If you’ve spent 20, 30, 40, 50 years or more suppressing yourself, living in fear, the sudden (it feels sudden even if it’s been years in the process) emergence of the raw you (and I truly envisage it as a someone who has been flayed, skinless and open), the exposure to all those things that you have feared all your life, opening yourself wide to the herd as your true self, something different, someone different to them, is a massive psychological break.
Admitting to yourself and admitting to the world that you can’t keep up with it, that forcing yourself to live like everyone else is slowly poisoning you, is decaying you, dissolving your whole being with every step, is a huge deal, it’s the biggest deal.
It’s why I used this imagery on ‘An Autistic Diagnosis’:
The act of knowing, the act of starting to unlearn and unveiling the Autistic Identity, is a metamorphosis. If you are not strong enough of mind and soul and heart, it is almost impossible to get through.
But what is the Autistic Identity and why is it so important?
It’s one component part of many parts that make up who you are. Your identity is shaped by your experiences, your race, your education, your skin colour, your sex, your gender, your nationality, your abilities and perceived disabilities.
But it’s also shaped by outside influences – it’s shaped by decisions made by others that you adhere to and allow to shape you.
This cultural conditioning creates expectations of normality, that if you do not adhere to, creates a conflict with those around you, who are all also adhering to the same expectations.
So, if you are Autistic, the whole concept that everything about you is wrong is being drilled into you pretty much from the moment you are born, hence Masking.
Among diagnosed children though, a really common thing to hear from parents is that: “I don’t want my child defined by their Autism.”
If you are Autistic, one of the biggest parts of your identity is Autism.
To say that you don’t want an Autistic child to be defined by Autism is an utterly ridiculously statement and it comes from fear and a lack of understanding.
I talk about the difference between Autistic neurology and non-Autistic neurology all the time. I talk about being Autistic from my head to my toes all the time too – but what does that actually mean?
Well neurology is the science that looks at how the brain works and cognition is how that brain processes, disseminates and acts upon the information it receives, so when we talk about Autistic Neurology and Autistic cognition, we’re talking about the process of how the brain actually works.
If you look at this image:
|Image description: A blurred out man holdiing out two white mobile/cell phones, one Apple, one Android|
Two phones, one is an Apple iPhone and the other is an Android phone.
Both those phones pretty much look exactly the same.
Both those phones effectively do exactly the same thing.
Yet both those phones work completely differently and need a lot of support to be compatible.
Are either of those phones better than the other? Not at all. They just do the same things in a different way.
So swap out Apple for non-Autistic neurology and Android for Autistic neurology.
Both those neurologies pretty much look exactly the same.
Both those neurologies effectively do exactly the same thing.
Both those neurologies work completely differently and need a lot of support to be compatible.
Are either of those neurologies better than the other? Not at all. They just do the same things in a different way.
But we’re talking about brains here, what’s that got to do with your toes?
Well, if I said to you imagine what a human brain looks like, you’d most likely come up with a picture like this:
|Image description: Profile of a human brain|
|Image description: Black and white photo from 1888 of a brain and central nervous system laid out prone.|
This is Mary. Say “Hi Mary”
Mary died of cholera in 1888 and Dr Weaver cut out her brain and central nervous system to map it out.
This is the entirety of the human brain. So now do you see why we say we’re Autistic from our heads to our toes? Our whole neurology, all our cognitive processes, our senses, the way messages are deciphered and sent from every part of our body to the cerebellum, the control centre, are all shaped and formed by Autism.
This is what being Autistic is.
This is why we are different.
We’re working on a different operating system.
This is why the Autistic identity is so important.
The way we take in and process information through all our senses, the way that information is sorted and directed through our nervous system, the way our memories are stored and filed, the priorities our subconscious brain decides upon and the way in which that is expressed outwardly in our decision making, our movements through the world, our communication, our expansive consciousness, our whole existence.
It’s all driven by Autism.
And it’s all very different to non-Autistic neurology.
Not better, not worse, just different.
Of course there are other aspects of us that make our identities, but to an Autistic person our very human existence is seen through the lens of Autism.
How can we not be defined by it?
Yet the statement made by parents still stands.
So we come back to fear.
Fear of the child being judged.
Fear of the child being segregated from the herd.
Fear of abuse and bullying.
All very real fears.
All things that happen regularly to Autistic people.
But does the answer lie in pretending that the child isn’t Autistic?
Does the answer lie in subliminally, or actually, shielding the child from their Autistic self?
And why are these questions that we’re even asking?
Ultimately it’s usually those with the best intentions that do the most harm, particularly to those we care about.
The negative narrative
|Image description: A lion and a baby playing on a rug under a tree, both look happy. Text reads: “Until lions have their historians, tales of the hunt shall always glorify the hunter.”|
The phrase in the image above is, I believe (and I’m happy to be corrected), a Nigerian proverb and it’s perfectly apt to the situation that we find ourselves in. A situation that explains the questions above.
There is an intertwining through the negative narrative – the history of Autism and the language of Autism; how they are wrapped around each other and the lack of ownership of Autistic people of both those things.
The narrative of Autism is written by the hunters. The academics, the researchers, the charities, everyone but the lions (For those who have lost me, the Autistic people are the lions).
Everything the hunters write is shaped by outside perspective. It’s all visual. They see behaviour and attribute reasons to it, they create their own story as to what Autism is.
They write the narrative. They control the narrative. They dictate where the narrative goes.
Nobody thinks to ask the lions…
The narrative is harmful to Autistic people.
It treats us as broken things.
It talks about us as “they” and “them”.
We’re ‘othered’ completely.
Due to this the Identity that most Autistic people naturally adhere to, is either the one of the Mask where they hide in the shadows, or the one written by the hunters, which is still a Mask, just one created by someone else.
So who are the hunters?
We’re back to Ted Cantle again.
“In some cases, the views held about the members of another group are so exaggerated and misconceived that they become almost laughable. However, it is easy to dismiss them as the product of ignorant and closed minds as they can often be part of a social system which creates a hierarchical order, justifying discrimination in order to preserve the position of the superior group.”
Think about all the myths around Autism… “…so exaggerated and misconceived they become almost laughable.”
And then: “…a social system which creates a hierarchical order, justifying discrimination in order to preserve the position of the superior group.”
Here we have a chain of power that goes from the decision makers all the way down to the stakeholders, a hierarchical order. It’s the Autism chain of power and it looks like this:
It’s almost like that hierarchical order was created to justify the discrimination of a superior group…
This chain of power shows how all the people (the lions) that need the power, the support, the education and the understanding, hold the least power.
It shows that the hunters (those at the top) control the narrative from their position of power; and effectively there is a game of Chinese Whispers being passed down the chain from the top to the bottom.
If you look at it from the point that the knowledge from the top is already corrupted, because it’s based on mostly false assumptions and the deficit paradigm, but not only that, it gets diluted by the time it gets to the bottom from the Chinese Whisper effect (train the trainer anyone); Lastly the information passed back up the chain is impaired because its impacted by the poor knowledge being passed down and taken as fact.
The professionals and the Autism Industry drive this narrative.
Roll back to the 1940s and 1950s and you have people recognising Autism and identifying what were considered deficits in those Autistic people (mostly children). The deficit or medical model exists because much of human knowledge of the internal workings of the body is driven by the fact that once something breaks down, you can identify what it does by the other parts that don’t work.
So before you start you’re already looking at things from a context of broken and fix.
So anything which does not appear ‘normal’ must be broken in some way.
The current way of thinking about Autism from the deficit/medical model is:
Person A can’t communicate verbally = Person A has a communication deficit which must be fixed.
Person B shuts down or ignores emotive situations = Person B has an empathy deficit which must be fixed.
Person C doesn’t do things the same as the others = Person C has a behavioural deficit which must be fixed.
It’s very black and white, isn’t it…
This is where the argument between deficit and difference comes in. The deficits are decided upon without context. If you can’t do A, then you must be B.
But if you start adding in context:
Person A can’t communicate verbally, but can communicate efficiently and often better through other means = Person A communicates differently, this is easily facilitable.
Person B shuts down or ignores emotive situations because they find they are emotionally overwhelmed by them and need to protect themselves from them = Person B experiences emotions differently and reacts accordingly.
Person C doesn’t do things the same as the others because they are doing things more efficiently based on their cognitive processes and in a way that keeps them happy, but harms nobody = Person C is behaving differently, let them get on with it if it helps.
If you think deficit, you think negatively; you focus on the things the person can’t do, you focus on how to fix what is supposedly broken.
If you think difference, you think positively; you focus on what they can do. What it doesn’t mean is that the person does not need support, only that you are making their strengths a priority.
Much of this stems also from the culture of Autism research.
If you wind everything back to the 1940’s and how Asperger and Kanner et al viewed and recorded Autism from their external perspective. You have to consider then that every piece of Autism research that has come after is either using their work as the base material, or is built on research that used their work as the base material and so on and so on. It all extrapolates out from effectively one source.
But what if Kanner and Asperger were wrong?
That means that the 80ish years of research that has come afterwards is built on a foundation of sand.
What happens when you build on sand?
Your building sinks or falls over.
Much of what the Autistic community rails against is actually the narrow description of Autism as set in stone by those those two. Many of the challenges to the narrative are against myths created and purported by Kanner (in particular) and those who have perpetuated his work.
Why is it that nearly a century later we’re hanging off the words of some who was, if you take the views of the Autistic community, actually very wrong in their description of Autism?
Why are we still diagnosing Autism in adults and children in the same ways and from the same criteria; and using a criteria which only identifies behaviours exagerrated by anxiety?
All of that is the ‘medicalised’ view of Autism using and driving research to reinforce Autism as a medical thing. To keep control of it.
This is where the use of language around Autism becomes so important. For self-identity, for mental health reasons, for the broken/fix mentality that society has when it comes to Autism.
How we talk is how we think
Currently we live in a world that thinks it right and proper that Autism is seen as a thing, a part of an Autistic person. A world that likes to focus on the Person First.
This is represented by Person First Language.
Person First Language is designed to separate the person from their perceived condition. So with Autism it describes an Autistic person as ‘having’ Autism, or that they are ‘with’ Autism. It’s described in more detail and with a brief history of it’s evolution here in a series of Tweets about Person First Language (you don’t have to be on Twitter to read them) by Autistic author C. C. Lynch.
Using language like this creates the perception that Autism is a part of them, like an organ, or a limb, or more negatively a disease or a virus.
The separation of a person from Autism is something that is instilled in all of us Societally.
The internal voice that we adopt from the world as children and onwards through to adulthood and beyond tells us that a part of us is broken.
The problem is that if we believe that Autism is only a part of us, it instantly put us at odds with ourselves.
There will always be a focus on a part of the person that needs to be overcome, a part which does not exist, so therefore cannot be overcome.
The result of that is resentment.
A constant war with self that can never be won.
A fracturing of identity.
A negative feedback loop.
I know this. I spent years there, banging my head off of the wall (sometimes literally) over things that I couldn’t do – even supposedly simple things like picking up the phone and making a call – sometimes it would take me days to do this.
And I would ask myself why and get angry and frustrated with myself and hurt myself.
Why? Because before my diagnosis I believed I was broken and after my diagnosis there was a reason I was broken. Nobody ever thought to tell me that I wasn’t broken, that things were just different for me and that was OK, that it’s OK that picking up the phone was a herculean task and that if i wanted to communicate in a different way, then that’s fine.
To go back to the quote from Ted Cantle earlier, all that is generated by this is self-prejudice.
Self prejudice driven by language. Language which is driven from the top of the chain, to the bottom.
Due to the lack of power among Autistic people, much of the efforts of those who seek to change things; who, for want of a better phrase, have woken up to the fact that things aren’t right and that they aren’t broken; are focused onto trying to change this narrative on social media.
It makes me want to weep sometimes.
Recently I’ve become a bit jaded toward it and that’s mostly because nearly every time I see a tweet by an Autistic person, I see a non-Autistic person jump on it saying things to the effect of:
“Person First language please.”
“It’s ‘with’ Autism, not Autistic.”
This is the best one, directly to an Autistic person:
“How dare you demean people with Autism, by calling them Autistic.”
I very rarely write anything that could be deemed poetry (I’m not even sure this counts to be honest), but this fell into my head:
As I mentioned before, Person First Language is used deliberately to separate a person from their state or condition, so as to keep the person framed at the centre.
If something is separate then surely it can be separated.
You see this reflected in the attitudes of those who use therapies on their children:
“You can be normal, you just have to try harder!”
You see this reflected in the attitudes of those who use ‘cures’ on their children:
“Here, drink this bleach cocktail.”
There are parents who are driven to make their children ‘normal’ at all costs and it’s all because of this negative narrative, dripped down from above, dripped down by those whose jobs exist because of it, whose fortunes are dependent on a continuous cycle of parents, wave after wave, who blame themselves for their children’s ‘wrongness’ and are desperate to do anything to right them, completely unaware that they have effectively fallen for a marketing ploy to make them think that way.
Parents don’t know they’re doing this and deny (often) that they are when it’s addressed; but they are constantly pushing this narrative wittingly and unwittingly. They are led to believe that their child needs to move forward in a typical way, that milestones need to be pushed for, because they are told, openly and subliminally, that ‘normal’ is the only way.
But who gets poorer and poorer?
Autistic people and their families.
In fact they’re ‘getting worse’, or they’re having a mental health crisis. Or they have PTSD or C-PTSD created by the very thing that was supposed to fix them.
Then an Autistic person points out what the parents have done wrong.
“We did everything we could”
“We didn’t know any better”
That’s the rub of it.
Those three sentences.
Actual sentences that have been spoken to me and others, repeatedly. Countless times, by Parents whose children have emotionally snapped like a twig.
A negative narrative primed by the language it uses to deliver its message.
|Image description: Two columns, each providing examples of Person First Language and the corresponding Identity First Language.|
This is a slide I use on a presentation I do about the language around Autism.
On the left is a phrase using Person First Language, on the right is the same phrase using Identity First Language
When you look at them side by side, you should instantly recognise how important identity is and how ridiculous it is to even think the other way. How empowering and self-pride inducing that language and that label can become if used in the right way.
The fact that Person First Language was created by because people felt that they needed reminded that the person in front of them is a person and not a condition, is horrifying.
As I said to somebody the other day:
“I’m Kieran, I’m Autistic. That’s my person first.”
The majority (not everyone) of the Autistic community prefer Identity First Language;
Poll after poll after poll confirms this, the largest of which currently, was put on by Chris Bonello from Autistic Not weird which had over 11000 respondents. Lorcan Kenny’s research “Which terms should be used to describe autism? Perspectives from the UK autism community.” or Morton Ann Gernsbacher’s editorial perspective on how Person First Language in scholarly writing creates stigma reinforce this also.
Overall, we want it to be recognised that we are Autistic; that as well as being a diagnosis, Autism is an identity.
Autism colours every aspect of our lives, it is how we perceive the world.
Our Autistic Identity is hidden under a Mask of society’s creation.
Society’s lack of acceptance forcing us to hide in plain sight and then, when it identifies us, forces us to accept a narrative about ourselves of it’s own creation.
The tool for this forced suppression, this oppression, is the language used to pin us down.
As with anything there are negative aspects to Autism, for an Autistic person, but that does not mean that Autism has to be negative.
Suffering doesn’t stem from Autism, it stems from complex co-occurring conditions, needs not being met sufficiently and the extreme anxiety generated by both. The current narrative would have us think otherwise though.
Nobody lives with Autism, you live with a person, an Autistic who just happens to do things differently to you; you shouldn’t need to be reminded of that.
Similarly with all marginalised and minority groups – it’s the fact that you are marginalised and a minority that makes your identity even more important.
Sadly the authors of all these narratives are unable to recognise that. Mostly because they are in positions of power.
In the UK in March 2019, there was much furore over the DVLA (The organisation in charge of cars and driving) – which decided to state that all Autistic drivers needed to declare the fact that they are Autistic.
An article spun off the back of this by Nick Hodge, who is, scarily, a Professor of Inclusive Practice at Sheffield Hallam University.
I’ve recreated the article in full, choosing to screen shot it rather than link it, because frankly, I don’t want to add any more page clicks to any online publication that takes no responsibility in what it posts. If you want to go look for it, it was published in a University magazine online and offline, called ‘The Conversation’. I’ll give you more on ‘The Conversation’ later.
So somebody who has apparently spent his whole career trying to break the Deficit model – the very thing that has been mentioned over and over and over through this article, here is Professor Hodge describing difference as a negative:
“Autistic people and their supporters challenge the use of the term “disorder”, claiming it to be misleading, demeaning and an attack on self-esteem. Instead, many autistic self-advocates identify as “different” rather than “disordered”. The National Autistic Society (NAS) supports this notion of difference but also refers to autism as a “condition”.
“But for autistic drivers, this is probably no more helpful than the term “disorder”, as the DVLA is as likely to be concerned about people driving with a “condition” as a “disorder”. Nor will the idea of being “different” be of any more help to autistic drivers – as it is not clear who or what autistics are different from. Difference therefore becomes just another term that marginalises autistic people. It sets them apart as “other” and makes them vulnerable to particular regulation.”
According to this way of thinking, recognising that you are different, embracing that difference as an identity, clarifying that to the world, rather than suppressing it because of the way you are treated because you ARE DIFFERENT, is something we shouldn’t do, because other people don’t understand what makes you different and if they punish you for it, that’s your fault.
This is basically a Professor of Inclusive Practice effectively encouraging Autistic people to Mask.
It’s scary because he doesn’t seem to understand what inclusion means in this instance. Quite bizarrely he seems to think inclusion means nobody being identified by their differences. Which is ridiculous. Inclusion exists because differences are recognised…
His views on this are possibly because he brings a negative bias to ‘difference’.
Potentially because he is, from an outside perspective, a middle class white man, living in an academic bubble, perhaps his identity has never been challenged and maybe he’s never experienced this personally. That might explain why he sees an issue with difference, it could then come from negative bias…
How could you possibly hope to understand or appreciate any sort of difference if you are not different, or have not experienced what it is to be different…?
(Disclaimer here to state clearly that I am only able to empathise towards other marginalised groups from a position of parallels)
There’s also a huge element of victim blaming going on here: The DVLA do not understand Autism and make assumptions based on poor quality information, ergo a general statement goes out making the assumption that all Autistic people are bad or potentially dangerous drivers.
So if we stop saying we’re different, the DVLA will treat us the same as everyone else.
If we don’t embrace our identities, we’ll get treated the same as everyone else.
If we just stay the same as everyone else, we’ll get treated the same as everyone else.
If we Mask, we’ll not get excluded from the herd.
Apparently that’s how inclusion works.
How can someone who claims to want to understand the importance of the Autistic self come from a position of denying the Autistic self? It genuinely comes across from this that he doesn’t understand identity at all, nor it’s role in self-belief, confidence and mental well-being.
He also really doesn’t seem to understand that despite the DVLA not understanding Autism, so they discriminate against all Autistic people; that the answer to that discrimination is not to make life easier for the DVLA by Autistic people not embracing their differences.
Professor Hodge himself is being discriminatory. Yes, the Professor of Inclusive Practice…
Would Professor Hodge tell a Person of Colour that they shouldn’t embrace their identity, or should conceal it?
What Professor Hodge is doing is demonstrating an absolutely poor grasp of Autism, Identity and Inclusion.
Quite worrying when you consider his Media profile:
|Image description: Media Profile of Professor Nick Hodge, reads: Professor Nick Hodge is a professor of inclusive practice and co-director of the Sheffield Hallam Autism Research Partnership (SHARP). He is a frequent commentator on issues affecting autism and education in the media.|
“He is a frequent commentator on issues affecting Autism and the Media.”
Oh dear, that’s terrifying…
I don’t want this to become a rant about Professor Hodge, I’m sure he’s a lovely man and in no way do I write this with any intention of anyone forming a lynch mob – the opposite in fact. But his views here are really a prime example of what I have been talking about, what I talk about all the time:
I do a talk on responsibility around Autism and the lack of responsibility in not only education about Autism, not only the delivery of service and support, but responsibility in thinking before speaking and writing:
Professor Hodge is a useful example of this. He wrote a small article in ‘The Conversation’.
Easily dismissed, yes?
Except it isn’t, because look at the founding partners in production of ‘The Conversation:
University of Aberdeen,
University of Birmingham,
University of Bradford,
University of Bristol,
University of London,
Glasgow Caledonian University,
University of Leeds,
University of Liverpool,
University of Nottingham,
The Open University,
Queen’s University Belfast,
University of Salford,
University of Sheffield,
University of Surrey,
University College London,
University of Warwick
And not only that, because we have strategic partners: Commonwealth Bank of Australia Kingston Smith
And a Media Partner:
ISRF – The Independent Social Research Foundation (ISRF) is a public benefit foundation funded by a group of private philanthropists with interests in academia and social science, founded in 2008.
Lloyd’s Register Foundation – The Lloyd’s Register Foundation is a charity that helps to protect life and property and support education, engineering-related research and public engagement.
The Ogden Trust – We’re a charitable trust that exists to promote the teaching and learning of physics.
Also content Partners:
Bristol University Press
A Technology Partner:
It goes from being what appears to be a minor article, in a what looks like a small university publication, to having an enormous readership base and backed up and reinforced by prestigious places of learning and organisations.
We have an article put out by a Professor of high standing, whose very subject is inclusion, who puts out a piece like that effectively telling Autistic people to step back into the herd, “nothing to see here”, by embracing yourself you’re ‘othering’ yourself, because nobody should be expected to learn, accept or understand you.
And who is that done in conjunction with and in front of?
‘The Conversation’ is published in conjunction with 79 universities full of the next generation of professionals who will be working in the field of Autism.
Where is the responsibility in that? The ripple effect not only goes out in waves through students, but the impact of that ripples through their careers on the people they work with in their lifetime.
(*On a side note the DVLA were told to make that move by the General Medical Council of the United Kingdom. More uninformed power.)
A life under constant assault
|Image description: Male child peering anxiously through a hole torn in a metal wall. Text reads: How can anyone tell us that we shouldn’t foght for our identity, when we are under a constant barrage of ignorance, indifference, abuse and neglect.|
How can I and other Autistic Advocates encourage Autistic people to embrace their Identities (deliberate capital I), to feel positive about themselves, to shake off the deficit model, to recognise the things that disable them but focus on their strengths, to be proud of who they are; when someone can just say uneducated and ill-thought out things like this and not recognise their responsibility and the effect of what they say?
How can I and other Autistic Advocates fight things like the National Autistic Society getting away with a £4000 fine for physical, emotional and financial abuse on Autistic people in their care homes when we are undermined at every turn?
Whilst their CEO dismisses the whole thing in two short paragraphs:
Missing text = We got away with the aspect of physical abuse because the witnesses were intimidated by the accused, lucky us. We actually don’t give a shit about the people we are supposed to represent.
In an updated statement (delivered 3 days after being harangued by the Autistic community) they told a blatant lie:
This based on reports like this one:
The lie? The National Autistic Society knew about the abuse in 2014, but did nothing until 2016…
And it isn’t the first time the National Autistic Society have caused concern over their actions over the abuse at Mendip House…
And it’s not the first time the National Autistic Society have caused major concern at all. Their attitude towards Autism ‘cures’ and therapies could be described as fence-sitting
How can I and other Autistic Advocates call for Autistic people to embrace their identities when we have to explain over and over that nobody listens, that Autistic children are communicating yet they are ignored? That nobody believes Autistic children have the right to consent, or sees that the attitude towards consent and Autistic people continues into adulthood, as we are all perceived to have a learning disability so our voice does not count?
When money is front loaded into research designed to find the cause of our existence or change our natural behaviours, like this one example of a million – a wearable device designed to warn parents when we flap. So they can stop it…
That Autistic people are being locked in like prisoners in ATUs under the Mental Health Act, with all their rights and freedoms removed, for nothing more than being Autistic like here and here and here and here and here.
When young people like Oliver McGowan are dying in hospitals because health staff don’t understand Autism.
When Autistic people are being electrocuted to change their behaviour, because Autistic behaviour is not suitable, all in the name of a behavioural therapy which is becoming more and more common in the UK.
When you consider the numbers of Autistic children who can’t access education because of the school environment and lack of understanding which causes huge anxiety, but are being termed ‘school refusers‘ and again, going back to consent, the answer to crippling anxiety resulting from an Education system which does not understand or can cater for Autistic cognition and does so in a building which is sensory hell is, according to Social Services around the country, to drag that child kicking and screaming back to that very same place with minimal changes in place; either forcing them to Mask harder, or breaking them completely with trauma, upon trauma, upon trauma layered upon them. But because the Professionals can’t recognise trauma in Autistic people (young and old) and have such shallow understanding of Masking and Burnout it’s acceptable to do so.
We have expectations of, and do things to, the children of our society, which we would not stand for happening to ourselves. Yet over and over they are forced to fulfil these expectations and blamed when they can’t. And nobody takes responsibilty for this.
When you look at the numbers of Autistic teenagers that self harm or try to kill themselves, 28 times more like than their peers.
When you look at the number of supposed ‘cures’ for Autism, like CEASE Therapy, Miracle mineral solution, Chelation, Hyperbaric chambers, and the number of therapies like Applied Behavioural Analysis (and it’s many variations), Positive Behaviour Support, Floortime, Son Rise and many, many more, all of which come from the platform of the deficit model, all are about change and fix, all effectively force Masking and all cost lots of money…
Speaking of which, how about the parents who throw money into Stem Cell therapy treatments which do absolutely nothing other than create pain and fear and are often filled with literal crap… Medical waste being injected into children for absolutely no reason other than to pockets of those doing it.
When this is just a minuscule handful of examples of the abuse, oppression and subjugation handed out to Autistic adults and children every single day.
When in a review of funding into research into Autism in 2016 alone: “Animal research represented 44% of total UK autismresearch funding.“
So nearly half of all research into Autism in the UK in 2016 didn’t go into equity, didn’t go into backing up everything being said by Autistic people about Masking and burnout, didn’t go into mental health, didn’t go into societal supports, education, didn’t go into looking at co-occurring conditions like epilepsy, or anywhere that is going to make a difference into the lives of Autistic people.
It went into Autistic mice. Genetics and behaviour.
A relentless tide of negative, telling us not to embrace who we are, to not be proud of the things that make us different, to slap that Mask back on harder and stand firm in the middle of the herd.
How can anyone tell us that we should not fight for our identity, when we are under a constant barrage of ignorance, indifference, abuse and neglect?
Simply because the power is in the hands of people that don’t know what they are doing and don’t understand who, or what they are dealing with?
Autism doesn’t define you
|Image description: To the right, a blonde haired woman in a denim jacket, staring to camera, standing visibly surrounded by people who are faded in colour and unaware of her. To the left text reads: Under the current narrative being Autistic means being a stranger, surrounded by people, yet wandering alone.|
That old line from before:
“Autism doesn’t define you!”
How can it not?
But it defines us especially because it IS what makes us different from everybody else.
But not according to the language of otherness, the language of separation.
Under the current narrative of Autism, being Autistic means being a stranger, wandering alone, yet completely surrounded by people.
The herd encompasses us, yet we’re isolated, often lonely.
This fracturing of self, this separation driven by this narrative, this is what causes us to be alone.
Detached from everything around us.
This is what causes us to Mask so hard in order to stay exactly where we are.
This is what kills us.
All driven by language.
The same people who tell you there is no support, that can’t help you, that send you on your way with something that you do not understand and are struggling to comprehend.
The same people who now, if you’re struggling, pull away from you and blame you.
Language derived from national charities that don’t help you, but convince you they’re helping somebody and then pass you onto volunteer run parent groups.
Parents groups which do their best with the limited knowledge they have, but reinforce the language, the ‘all-knowing’ information of experts, over and over and over.
Negative feedback loop.
No, it’s not your fault.
(Strange thing to name your cat)”My child is proud of having Autism”
(You’re actually still defining him by Autism, even though you’re saying he isn’t)
The fracturing of identity
The difference acceptance can make is show in Craig Goodall’s research “‘I felt closed in and like I couldn’t breathe’: A qualitative study exploring the mainstream educational experiences of autistic young people” and “Inclusion is a feeling, not a place: a qualitative study exploring autistic young people’s conceptualisations of inclusion” and Rebecca Wood’s “Autism, intense interests and support in school: from wasted efforts to shared understandings.“
The creation of an environment where an Autistic young person is allowed to self-explore and look to the future with positivity is paramount, as explored by Serena Cribb, Lorcan Kenny and Elizabeth Pellicano in “‘I definitely feel more in control of my life’: The perspectives of young autistic people and their parents on emerging adulthood“; the dismantling of a world where it is acceptable that Autistic people die so much earlier than everyone else simply because our needs not recognised and understood as is reflected in the fact that Autistic people are more likely to die of injuries that any other cohort, the relationship between Autistic people and suicide as show in the United States and the relationship between Autistic people and suicide and it’s links to Autistic Masking, as shown in the UK by Sarah Cassidy‘s work.
I refuse to dictate to anyone how they identify themselves, it’s their choice.
But I beg anyone who identifies themselves, or whom identifies a child as ‘with’ or ‘having’ Autism to please look at the bigger picture, look at the industry, discover the history. Recognise the complete shambles that we live under and try to understand the connotations and negativity that derives from this language.
It’s so much healthier mentally to focus on the acceptance of self and to think positively in that regard, to seek strengths, to grow confidence, to respect yourself.
Different not less after all.
The key to all this is acceptance. Acceptance of self and acceptance of others.
It is only with acceptance of self, with a mind and body compromise and understanding; that outrospection can be achieved. Outrospection is the point where you start to learn about yourself through shared relateable experiences with other people who have experienced the same things as you. With outrospection comes the true realisation that you are not alone in this.
At the end of the day, in terms of Autistic people, no matter how much the geography changes the story remains the same.
The Autistic experience of Autism is what binds our community together. Despite the many disagreements that ravage our community, often imposed on us by belief in the pathology paradigm, the internal experience is shared and relateable, the emotional impact is shared and relateable, the cognition and the neurology is shared and relateable.
From our heads to our feet.
Autistic is not a bad word and nor is Autism.
The only negatives attached to it are those put there by broken and fix. Sustained by those that do not understand Autism nor the myriad of co-occurring conditions that hitch along with being Autistic.
Autism is owned by Autistic people.
It’s an identity.
It’s our identity and it’s so important.
Autism defines us because we are Autistic.
Our identity is ours, it belongs to us and nobody else, whether we are 5 or 105.
Look closely at yourself. What do you fear?
Why are you afraid of our difference?
Do we challenge you?
Does it make you question who you are?
Who are you to keep us from ourselves?
Who are you to prevent us from embracing our identity?
Who are you?