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Neuroqueering and the Autistic expression of pain

Neuroqueering is a liberational practice. It allows the person to express themselves authentically. But what if authentic expression of Self could cost you your life? What if the people observing you are basing their judgements on a majority group that does not express themselves in the same way that you do?

This is why we need to talk about Autistic people and pain. When we express pain, both emotional and physical, we often embody thar experience differently to the neuromajority. Autistic people have a complicated relationship with pain, and for the sake of simplicity, I would like to consider physical pain.

In hospitals around the world, pain is often recorded using numerical and visual scales. These rely on a person being able to articulate the way they are feeling on a numerical scale and be witnessed to display pain visually in a way that marries up to that figure. One might think it’s a simple system, but if you are Autistic it presents a significant challenge.

Autistic people often experience alexithymia. We struggle to put internal sensations into words. We often can’t articulate what we’re feeling to ourselves, let alone a doctor on a numerical scale. At the same time as this, we often do not express pain in the same way as those of a predominant neurotype.

How many of us find paper cuts unbearable while walking around daily experiencing delirium inducing chronic pain? An example from my own life is the 10 hours I spent walking around with a collapsed lung. I was in agony, but I didn’t respond “typically” to that pain, nor could I articulate its severity in a way that made sense to others.

Enter in the era of the neuroqueer. We are witnessing the birth of a post-normal society. This is a world where Autistic and otherwise Neurodivergent people feel more and more like they can embody their experience in a way that means something to them, and not for the benefit of others. This means that modern medicine needs to also evolve.

Unless healthcare professionals familiarise themselves with the Autistic expression of pain, many of us will be failed (or even killed) by a lack of clinical competency. That is what it is. There is no clinical competency that should not, or does not include an understanding or minority groups experiences of pain.

Neuroqueering is a wonderful thing, but it really does shine a light on the failings that befall Autistic people.

What purpose does the concept of mental “illness” serve?

As a Schizophrenic person, I see many talk about me as being mentally “ill” and in need of medicine. I do take medication, but for me, medication usage is similar to what one might see within ADHD communities. Medicine is a tool, not a treatment. It allows me to function in environments that are not designed to be accessible to me or my needs. It allows me to live my life without the constant experience of distress, one that I experience without medication because the world is not designed for me.

All suffering is valid, and all neurodivergence can result in suffering. Not because we are ill, but because the world is a traumatic place to live. Neurodivergent people have to face the oppression of all that is different on a daily basis.

“Illness” as a concept within psychological wellbeing a distress is a convenience. It allows professionals to tell us our suffering is unavoidable. If we die by suicide, then we are collateral damage. Victims of a pathology ravaging human kind. If we are “ill” then professionals and leaders do not have to acknowledge their role in a system, causing us distress.

This is what we are actually experiencing. Distress. When we can move forward from pathology models and start to consider that what is happening is a very human experience, we can start to point the blame where it belongs. A world that is violent and terrifying for a huge portion of the population. It is not on us to recover from a mysterious, unquantifiable entity of illness. The world needs to change.

We need to recognise that distress is a human experience, and no two humans have the same experience. Just because my distress looks like the loss of our shared reality does not mean that I am ill. Just because I take medicine that eases my distress does not mean I have a disorder. We don’t assume ADHD’ers to be ill for taking medication. Why do we do it to other forms of medication-assisted neurodivergence?

This ties us up in ideas around med-shaming and toxic positivity. One of the reasons people feel shamed of their meds is because, to them, it feels like an admission of guilt. They weren’t strong enough to survive without becoming ill. It’s not fair to let people feel that way. It’s also unfair to go the other direction and tell people to manage their distress without tools such as medicine. It’s possible to be neurodivergent (and not ill) and still need medication for day to day life.

Neurodivergence is aggressively neutral. It has positives and negatives, and it also has experiences that are not able to be compartmentalised. Truthfully, neurodivergent experience is human experience. The fact that we have to section off different experiences and diagnose them as “illness” or “disorder” fundamentally undermines the neurodiversity paradigm.

Mental “illness” is a deeply flawed concept, and until we fix this, we will not be able to reduce human distress.

The privilege of being neuroqueer

I have, for some time now, discussed neuroqueer theory (as conceptualised by Nick Walker and her colleagues), adding my own takes to the emerging liberatory thoughts of a blossoming post-normal era. I consider myself neuroqueer. Not only because of the relationship between my queerness and my neurodivergence, but also because of the relationship between my Self and normative society.

In my book A Treatise on Chaos, I discuss what I have conceptualised as “the Chaotic Self”. Rooted in the idea that all things tend towards chaos, ever changing, unable to unexperience the events that form our sense of Self. I consider how I have neuroqueered my way to this understanding of myself. What I don’t discuss in that book (although I do discuss in The New Normal) is that I was only able to gain this understanding of who I am through privilege.

Privilege doesn’t necessarily refer to the presence of a benefit. More specifically, it is the lack of obstacles and barriers. I suspect this is why so many people struggle to see their own privilege. Much like the Dunning-Kruger effect, you don’t know what you don’t know. You don’t realise the advantage of a clear path through life if you have never had to take stock of obstacles.

I have queered my neurology in a number of ways. One of those ways was the use of mind-altering drugs. I have no doubt that my privilege is what allowed me to do this with no legal repercussions. I also did not have to deal with abusive family and had a safe home away from those who would exploit my journey of Self discovery. I had fewer obstacles to my journey of understanding and growth than those with less privilege.

Neuroqueering requires an element of authenticity in one’s embodiment of Self. It’s necessary to manifest your truth through action, but what if doing so could place you in danger? For BIPOC or other marginalised groups, authenticity can be life-threatening. Authentic embodiment of a marginalised identity is often criminalised or pathologised. Both can land you in prisons or institutions, in some places, it can be met with violence.

Those of us proudly flying the neuroqueer banner need to realise something important. Neuroqueerness is not an individual endeavour. It requires societal evolution. To be neuroqueer requires us to use our authentic embodiment of Self to drive a change that makes a post-normal society safe for all of us. Neuroqueerness that is only accesible to the few is not true neuroqueerness. To be neuroqueer is to fight for the liberation of all humans.

As we move toward a world where normative violence is unacceptable, we need to be prepared for the pushback. Those who benefit from normativity and oppression will not support the redistribution of power. For those with less privilege, this fight could be deadly. As we liberate ourselves, we must make sure to liberate those for whom the barriers to freedom are greater.

I am neuroqueer, and I will fight for your eight to be neuroqueer too.

The infinite and I: Exploring my Neuroqueer Self

Of recent, I have been somewhat hyperfocused on how people understand their own identity, and our individual sense of Self. I have discussed in my book The New Normal how the Self is socially constructed from our interactions with others and our wider environment. I think, however, it’s time to really zoom in (or perhaps, out?) on what the Self really is to me.

If being multiply neurodivergent has taught me anything, it’s that the variation of the human mind that exist are as numerous as the people on earth, but what of the Self? How many variations of me are possible?

First it is necessary to consider how my Self came into existence. It was constructed and scaffolded, not just by the people in my immediate environment, but by the conditioning that I have been exposed to in wider society. Society has given me structures based on false binaries, which I have had to deconstruct.

What has become clear to me is that I can become whoever I want to be. The Self is not a fixed point, it is a fluid and moving substance, more akin to a liquid than a solid. The Self that I am now, is not who I was 10 years ago, and is not who I will be 10 years from now. All things change, including me.

In that sense, each human life represents infinite possibility. Each person that exists has unlimited potential. By inflicting normative violence and attempting to mould another to who we believe they should be is to perpetuate trauma. We have to recognise that each time we hold something to be “normal”, we are likely projecting a piece of our own trauma onto another.

Conformity and assimilation has been weilded under names such as “unity” by those in power; but the true unity is in the radical queerness of subverting the social construction of reality. All things in human knowledge are socially constructed to some degree, we have a responsibility to constantly question what we hold to be true. There are infinite variations on the truth because the normative version of truth is in fact a mistruth.

We have been told that who we are, how we think, and how we express ourselves, needs to be in line with a collective truth. This is untrue, we are physical manifestations of infinite possibility. The oppressive structures of colonialism and normative culture rely on us forgetting that. Of course, because how do you control a population that knows it’s own endless possibility?

So, how do I understand my Self?

I am whatever I want to be, I am an ever changing and flowing river of possibility. Like any flowing substance, I calve a path through the landscape. That is why I have to be responsible with the course I take through life. It is not my right to cut through others and their landscape. I must calve through the oppressive structures of my own landscape, while elevating the voices of those for whom the landscape and structures are different.

We are multitude of drops forming an ocean, and we owe it to each other to create the tidal wave that washes the old world away.

Queerness and me

Queerness. It’s a word that I hid from for over 30 years, and yet, as I type it, I find myself feeling a deep comfort. I have long known that the space between myself and “typical” society is far greater than the purported six degrees of separation. I have at times considered that gulf to be one of existential orders of magnitude. The concept of “alone in a crowded room” is not alien to me. Nothing much is alien to me, except perhaps (at times) myself.

Being Autistic is a core part of my sense of Self. I understand myself through the lense of Autisticness, I embody my neurology unapologetically. Of course, there is far more to my experience than being Autistic. I am also Schizophrenic. Some might pity me, offering me sympathy for my mental illness. Illness is a word that does not sit right with me.

Schizophrenic, yes. Unwell? If I was unwell, should it not be quantifiable? A value that can be measured by a body that lacks the homeostasis that allows it to function properly.

No, I am neurodivergent. That doesn’t mean I don’t suffer, but I believe we must externalise suffering into the environment. Suffering does not arise in the Self, it is a function of inhabiting a space that was not meant for you.

So where does queerness fit into this?

I have come to understand that there are boundaries between the typical and atypical bodiment of the self. These boundaries are man made structures. Social conventions waiting to be transcended. Much like the way I transcend the convention of neurotypicality, delving into divergent neurology, I find myself openly subverting all expectations placed upon myself.

Queerness, to me, is not about who I love. Who I feel attraction to is such a small part of my queerness. In my universe, queerness is the subversion of a reality that has been imposed upon me. If experiencing psychosis has taught me anything, it’s that reality is not a fixed point. While being Autistic has taught me that society’s truths about what is and isn’t “normal” are closer to the machinations of a propaganda machine than anything objectively true.

No.

I am Queer because I do not belong in normative society. My neurology has made it impossible to assimilate. My queerness manifests from the urgency of an existence that requires me to carve out and defend a space to exist in. The boundary I push is the need be contained. I permit myself to take up space. I permit myself to experience my reality.

In many ways, My queerness or perhaps, my neuroqueerness, has allowed me to bookmark a place in my own story, one in which I can let go of the self-hatred for my bodymind’s tenuous relationship with reality.

It is okay to feel what I feel. It is okay to think what I think. I am no more defined by the intrusive nature of my traumatised thoughts, than I am by the colour of my hair. They are a small part of a wider human structure. It’s okay for me to admit that my sense of Self is constructed from interactions with others. We all build ourselves from the words uttered about us and to us.

Queerness doesn’t feel strange to me. It’s a liberation from the chains of normative violence. It’s freedom to think and feel without the moral judgements imposed by society through me. It is freedom from policing my own existence. It is existential liberation.

Neuroqueer: Dismantling our internalised ableism

This article was co-authored by David Gray-Hammond and Katie Munday

Trigger Warning: This article contains references to systemic and structural oppression, multiple marginalisation, and negative wellbeing and identity.

Ableism is prevalent in the wider world, but something that we often don’t consider is the ableist views we hold about ourselves. It is inevitable that after spending our lives surrounded by normative culture, we become conditioned to view ourselves as broken, deficient, or less than. Despite being able to share compassion with others, we still harbour overtly bigoted views towards ourselves.

We internalise the harmful things said to us by our peers and professionals – sometimes even partners and friends. We take them all in and think less of ourselves and we begin to believe that there is something wrong with us.

It is clear that our interactions with other people play a significant role in the development of our sense of Self. Our identity is constructed by interactions with people in our environment, as noted in the golden equation from Luke Beardon:

Autism + Environment = Outcome

When Autistic people are in an environment that constantly belittles and mistreats us for our Autistic embodiment, the materials that we can access to construct ourselves are often self-deprecating.

How does one dismantle a lifetime of criticism and negative views arising from those experiences? First we have to understand the impact that said criticism has had on our psychological wellbeing. We have to recognise the neutrality of human thought, we have to learn that not all thoughts we have are reflective of who we are. It is possible to have negative thoughts without judging them as an indictment on our character. Once we begin to do this we are able to replace the criticisms with authenticity; a refusal to be ashamed of our embodiment. Perhaps, then, this is where neuroqueering comes into play.

It’s important to note the privilege at play when people are safe to queer their neurology. Authentic embodiment of Autistic experience can cost people their lives and their freedom in the wrong environment. Whether we care to admit it or not, not all Autistics are born equal in this society. Many Autistic people are multiply marginalised, and experience more than “just” disability discrimination.

One might ask whether or not neuroqueering is a physical act, or something that can be achieved in the mind. Many of us are at peace with ourselves whilst not openly confessing our Autistic experience. This reflects more on the environments that we inhabit than how we feel about ourselves. We can be proudly Autistic whilst understanding that not all environments are safe to authentically embody those experiences.

We also have to consider the role that the pathology paradigm plays in the existence of neuroqueering. The pathologisation and medicalisation of Autistic experience is the driving force behind most (if not all) of the ableism that we experience day-to-day. The idea that people who do not fit cultural standards of “normal” are broken, has not only created the mistreatment we experience; it also necessitated the existence of a counter-culture- neuroqueering.

How does neuroqueering change our perception of ourselves?

Neuroqueering can involve leaning into our weirdness, regardless of other’s opinions. It can also be radical self-acceptance and showing love to the parts of our Self that others have mistreated and abused. Not only does this allow us to reclaim the narrative surrounding our existence, it also gives us permission to take up the space that we have been conditioned to believe we are not entitled to.

Neuroqueer theory teaches us that assimilation denies us access to ourselves, and thus, denies access to the communities (or environments) that will help us meet our need for connection. Only by being our authentic selves can we find similar others and share in reciprocal validation. Neuroqueering dismantles internalised ableism, and the oppressive structures that have been built in our minds by others. It is a practice which champions diversity whilst appreciating that many of us still need support.

Neuroqueering politicises the nature of disability, centering us as the individuals in control of our own lives. Control that many of us are denied for being authentically Autistic. It allows us to appreciate the aforementioned neutrality of our existence through the lens of pride, and the refusal to be ashamed. It recognises that reduced wellbeing is the result of systemic oppression, and a chronic lack of access.

Neuroqueer: Authentic embodiment of mental health

This article was Co-Authored by David Gray-Hammond and Katie Munday

Trigger Warning: Discussion of mental health

It is a surprisingly contentious discussion to have, but the neurodiversity paradigm does not just apply to autistic people and ADHD’ers. Neurodivergent is a broad and inclusive term that applies to any bodymind that diverges from the neuronormative standards of a person’s given culture. This includes, but is not limited to;

Cerebral Palsy

Epilepsy

Down Syndrome

Traumatic Brain Injury

Learning Disability

Foetal Alcohol Syndrome

The list could go on for some time.

Something else that needs to be included on this list is the plethora of psychiatric diagnoses that exist, currently standing at over 300 in the DSM 5. It becomes apparent that there are far more than a handful of ways to be neurodivergent. Let’s not forget about the people who are multiply neurodivergent, existing in the overlap between multiple shared experiences.

This is what neurodivergence is, it is shared experience amounting to identity and culture.

Some of this shared experience is wonderful, there is a beauty to be found in neurodivergent communities. However, some of the experience is truly awful; the truth is that we (the authors of this article) would have to think really hard if we were offered a magic pill that would take away our negative mental health experiences. Things such as;

Intrusive Thoughts

Rumination

Paranoia and Anxiety

Incapacitating Depression

There is a balance to be found between “how much of this is me, and how much of this is something that is happening to me?”. There is a lot more to be said for the effect that our environment has on us.

So, how does one authentically embody the entirety of their neuropsychological experience?

We can embody our full-selves by accepting that sometimes, we need to step away, and allow space to exist with whatever we are feeling at the time. Feelings come and go, it is necessary to observe and acknowledge those feelings without judgement of yourself.

One of the main issues with this is that when you have mental health concerns, we have a tendency to judge that part of our lives as a wholly negative experience. Understandably, it can be very difficult to identify positives when the world focuses on perceived deficit and disorder.

Some of the positives we have found are;

Intense creativity

Self-awareness and introspection

Increased empathy

Intense positive experiences to offset the negatives

Greater attitudes of acceptance

In order to authentically embody our entire neurocognition, we first have to learn to co-exist with all of our experiences. This requires a level of acceptance that not everything will be wholly positive or negative. Self-acceptance is a radical notion, not necessarily in the traditional sense, more so in the way it changes our outlook on life. The boundary between neurology and the mind is so obscure that a change in one can alter the other.

Embracing our negative experiences is only a part of this. We are well aware of how harmful toxic positivity can be. Not everything is okay, and nor should it be, especially when experiencing trauma. We have to learn to co-exist with ourselves, that doesn’t mean we have to find enjoyment in every aspect of our inner and outer world. We need to show up for ourselves by giving our inner-self the same grace that we afford others.

Things aren’t always okay, but with a little self-compassion they can be better. It is an aggressively neutral thing, being neurodivergent.

Autism, diagnosis, identity, and culture

For a long time now, we have heard the phrase “If you have met one Autistic person, you have met one Autistic person”. This saying is an oversimplification of the fact that Autistic people have a wide variety of experiences, privileges, and neurocognitive styles. The question I want you to ask yourself is this:

Why is every Autistic person different?

Let’s consider the traditional route of Autistic discovery. Many of us found out we are Autistic when we were referred for and then recieved diagnosis. This diagnosis is based on the criteria laid out in the Diagnostic and Statistical Manual of Mental Disorders (or, the DSM) now in it’s fifth edition and the recent recipient of a text revision.

Davies (2022) discusses in their book Sedated: How modern capitalism created our mental health crisis, how the DSM is constructed. Davies discusses that the roughly 370 “disorders” detailed in the manual are voted into the manual by committee consensus rather than by any neurobiological research.

What does this mean for the diagnosis of Autistic people?

It means that Autistic experience is reduced to a list of traits, decided on by professionals who really only see Autistic people when they are in distress. After all, why go to a psychiatrist when everything in life is perfect? It also means that the experiences that constitute a DSM diagnosis of autism are voted into existence by groups whose entire careers are built upon neuronormative ideals.

So, of course we are vastly different from each other.

Herein lies the real existential conundrum though. Autism doesn’t actually exist.

As I write this, I can feel you getting ready to hit that “unfollow” button, but stick with me for a second.

Dr. Chloe Farahar of Aucademy once said that autism doesn’t exist, it’s an abstract concept, the only thing that actually exists is Autistic people.

If autism isn’t a disorder, condition, or even a tangible and existing entity that can be observed and measured, then what does being Autistic mean?

Autistic people are a minority group. We are a group of humans with shared experiences and communication styles. Autistic spaces are shared culture, and “Autistic” is an identity. Our vastly different experiences and privileges make us individuals, but our shared culture and neurocognitive style make us Autistic.

Diagnosis in and of itself is a privilege, a privilege that is required to access support, and in turn, upholds the pathology paradigm that Autistic people are drowning in.

There is a false economy surrounding the word “autism”. The insistence of it’s existence is the thing that is used to force quack cures upon Autistic people. Millions are poured into the prevention of Autistic people and the abject attempts to exorcise the abstract entity of “autism” from Autistic people.

The truth is that you will never separate the autism from the Autistic person. You can not remove what doesn’t exist. The only thing that “cures” and “therapies” will do is traumatise us. Because without our Autistic identity, we would not be us.

To destroy the autism, you will destroy the person.

This is why language matters, and it is why we need to move firmly into the neurodiversity paradigm. It’s time to stop pathologising human experiences.

The tin can conundrum: the problem with “labels”

Most of us have probably heard the saying by now. “Labels go on tin cans, autism is a diagnosis”. It’s true, calling autism a label is inherently invalidating. Being Autistic is an identity, a culture. As Dr. Chloe Farahar of Aucademy explains, autism itself is an abstract concept, the only thing that exists is Autistic people. So why do we feel the need to separate out and diagnose people according to the way their brain works.

After all, this is the neurodiversity movement, are we not trying to end the medicalisation of different neurocognitive styles?

Let’s consider neurotypicality. You don’t get “diagnosed” as neurotypical. This is because people with neurotypical bodyminds are able to perform their cultures neuronormative standards. They are able to assimilate into society, and therefore are generally good and obedient profit machines that don’t upset the status quo.

Neurodivergent people, however, are somewhat of a wrench in the gears. We can not perform neuronormative standards, not comfortably anyway. We require the masters house to be dismantled and rebuilt. Here’s where the conundrum comes into play.

As Dr. Nick Walker explains in her book Neuroqueer Heresies, the master will never give you the tools to dismantle their house. In this case the masters tools look like a society that disables neurodivergent people, and uses that disability to pathologise neurodivergence by locking all of the support that might improve our lives behind a medical diagnosis. That medical diagnosis, in turn, is then used as a marketing tool where by people have to pay for diagnosis (in many countries), pay for support, and in fact the “autism label” is used to wack a premium on anything that might make our lives more comfortable.

Let’s not forget that the ABA industry pulls down millions every year by selling the idea that they can “fix” your “broken” child, converting them into a person who can perform to the neurotypical standard. “Indestinguishable from their peers” has become somewhat of a motto for those who want to see autism eradicated.

So how do we break out of this conundrum?

As Dr. Walker says, we “throw away the masters tools”. We find and bring the tools necessary to dismantle a society that oppresses us. In this case, the masters tools are diagnosis and the so-called “supports” that we find locked away behind it.

It may sound radical, but we need to work towards a world where diagnosis is no longer necessary. A neurocosmopolitan society where no one neurocognitive style holds power over another. It’s radical, and sounds deceptively simple, but it isn’t.

In order for this to work, we have to dismantle the structural oppression that our current economic systems wield.

We have to understand the intersections between different minority groups.

We need to work together to create a world that doesn’t value arbitrary values over the value of human life.

This probably won’t be achieved in our lifetime, maybe not in our children’s lifetimes, but it can be achieved. We just have to take the first steps in the right direction.

A direction that takes us away from the pathologisation of different minds.

So let me end by saying this. My name is David, I’m neurodivergent. It isn’t an illness, I don’t require fixing because I am not broken. I live in a world that doesn’t fit me well by design. I refuse to accept that world, and I hope to leave a better one than the one I was born into.

Neuroqueer: An introduction to theory

This article was Co-Authored by David Gray-Hammond, Katie Munday, and Tanya Adkin

The emergence and popularisation of Neuroqueer theory in the contemporary disability rights discourse and Autistic rights movement represents a significant step forward. Not only does it encourage pride in ones true self, but it emancipates the Neurologically Queer from the normative attitudes that society so often indoctrinates us into. For many people this term may be new, so in this article we will explore it’s origins and meaning.

Where did Neuroqueer theory come from?

Neuroqueer theory was conceptualised individually by Dr. Nick Walker, Remi Yergeau, and Athena Lynn Michaels-Dillon, however Walker also gives credit to Remi Yergeau for expanding on the concept. Walker has a definition of neuroqueer theory in her book Neuroqueer Heresies. She does however give the following caveat-

“I should first of all acknowledge that any effort to establish an ‘authoritative’ definition of neuroqueer is in the some sense inherently doomed and ridiculous, simply because the sort of people who identify as neuroqueer and engage in neuroqueering tend to be the sort of people who delight in subverting definitions, concepts and authority.”

Walker (2021)

Walker has an eight point definition in her book, but to summarise-

You’re neuroqueer if you neuroqueer.

What is neuroqueer?

To start, what is Queer?-

…queer as not about who you’re having sex with, that can be a dimension of it, but queer as being about the self that is at odds with everything around it and has to invent and create and find a place to speak and to thrive and to live.”

bell hooks

Neuroqueer, then, is the idea that individuals who do not to conform to neurotypical standards are neurologically queer, further queering their bodyminds. Queerness begets more queerness. Not everyone who is Neurodivergent neuroqueers, but everyone who neuroqueers is Neurodivergent. Some might question if one might be able to unconsciously neuroqueer, we will explore this further in another article.

Why do we need Neuroqueer Theory?

The neurodiversity paradigm allows Neurodivergent people to reframe our bodyminds through the lens of a minority identity, difference rather than deficit. Neuroqueer theory takes this a step further, by emancipating us from societal normativity, through intentional acts of defiance. Neuroqueer theory could inform the disciplines of Critical Disability Studies and Critical Autism Studies, as well as the Autistic rights movement, following on from the origins of the neurodiversity paradigm.

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