When we consider power dynamics, we often consider our external environment and how power flows through the various parts of society, and where privilege is afforded by that power. While discussion of intersectionality and power dynamics is important when considering where discourse comes from and how it affects groups of people, we often don’t think about how such discourse injures our relationship with the Self.
Mental health has long been the remit of medicine. Distressing or unusual behaviour has been positioned as a pathology requiring treatment for decades, despite this approach not improving outcomes for those it affects in that entire time. We use a lot of troubling language when talking about psychological distress; disorder, condition, ailment, mental illness, psychopathology. Each of these words conjure up images of a medical emergency. They tell us that a problem is situated with us and that we need to be fixed.
We then also have to consider the militaristic language that surrounds medicine. “Chronic illness warrior” and “lost their battle to cancer” immediately spring to mind. The effect that these co-occurring discourse (see what I did there?) have on our sense of Self is to enter us into a fight with our own experiences. Experience helps shape the Self meaning that the popular discourse around mental health is placing us into a war with our Self. It is no longer okay to be us.
The irony here is that constant fighting with our own sense of identity causes further psychological distress. Perhaps the reason that outcomes in psychiatry have not improved for over half a century is because their methods and discourse are actually escalating our distress.
Instead of asking “what’s wrong with me?” We need to shift discourse over to “what happened to me?”. It’s vital that psychological distress be placed in the context of one’s environment and experiences of the complex power dynamics within them. There is a word for systems that require us to fight ourselves into a more socially acceptable place; oppressive.
Current systems within mental health treatment are weapons of the oppressive cult of normal.
As we look to the future, we need to consider how we will emancipate ourselves from normativity of all kinds and what we will accept as freedom. Society has spent a long time pathologising those identities and experiences that do not serve its own goals, and the time has come to stand tall and proclaim aloud; who I am has value, I will not be placed at odds with myself.
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.
When we consider harm reduction strategies for drug-users, we often think about education on the safer use of drugs. Things such as safer injection practices and “tasting the hit” to reduce accidental overdoses. While things such as safe consumption rooms and needle exchanges can reduce a lot of the surface level harms, there is a wider conversation about the factors leading to drug-use and the fall out from drug-use once it has initiated.
Here are some of the things that, in my opinion, are important factors to consider when trying to reduce the harms from drug-use.
1. Trauma-informed practice
First, we need to stop viewing trauma through a normative lens and realise that trauma can be experienced from just about any source. As I discussed with Tanya Adkin in the Creating Autistic Suffering Series, trauma is a subjective experience.
Once we have shed our misconceptions of what constitutes trauma, we need to recognise the role that traumatic experiences play in the harms associated with drug-use. Anyone supporting people around harm reduction needs to remember that they are more than likely working with traumatised people.
2. Responsible prescribing practices
The pathologisation and subsequent medicalisation of distress has done many people a great deal of harm. For many people, myself included, it has meant trading addiction to illicit drugs for addiction to prescription drugs. In my case, prescription drugs were more dangerous than the illicit ones due to ease of access.
People don’t like to admit it, but doctors often end up being a person’s main supplier of drugs.
3. Move away from current diagnostic models in psychiatry
Distress doesn’t have to be centred as a problem in the person. In fact, I would argue that it’s necessary to externalise it by looking to the environment, and subsequent experiences of people in distress. We need to consider that if we want people to be safer in the use of drugs, we need to think about what in their life has brought them to using them.
It is also important to embrace neurodiversity models. It’s not just Autistic people that are Neurodivergent. Neurodivergence can be acquired in a number of ways, or you van be born with it. It is important, though, to recognise that “mental illness” as a concept has not improved outcomes in psychiatry in over 50 years. Recognising Neurodivergent people in distress will take you much further.
4. End prohibition
The war on drugs is a lie. It has not stopped drug use, and neither has abstinence-based education. Making drugs illegal does not stop their use, it empowers clandestine markets to exploit the distress of vulnerable people, for profit, and increases harms through the lack of regulations around purity and age restriction.
This is a non-exhaustive list. We need to have a wider conversation about racism and other bigotry, socioeconomic status, housing, access to healthcare, and myriad other factors. I do not believe I could do this justice in a short blog.
I hope that we can move into a world where we support people rather than criminalise and institutionalise them. I hope that medical professionals can take a moment to acknowledge the harm their profession has done. I hope that we can all assess our own internalised ableism towards drug-use and addiction.
We may not be able to solve this issue over night, but little by little, we can make the waves that will sweep away the old models and make space to replace them with something that works better for every one. The greatest thing we can do is have a little compassion for others who are suffering.
Over the past decade or so, we have seen a surge in the awareness of so-called “mental illness”.
While the concept of telling people you are struggling has served a good purpose, the concept of “illness” has actually disempowered people who have these particular neurodivergences and the people around them.
Human suffering, as it stands, is a heavily medicalised field of study. It has become the realm of doctors and nurses, and this is where we become disempowered. When we experience suffering, we believe that only doctors have the responsibility to remedy that. The average person is made to feel as though they are “out of their depth”.
In fact, the responsibility for reducing human suffering is on all of us. Medication can take the edge off, but to see a true reduction in trauma that litters our society, we all have to do work. Doctors are not responsible for the environments and people we grow up with, and yet we assume they are the answer when we experience suffering as a result of those things.
Society is structured in such a way that we are likely to encounter trauma throughout our lives. It is important to move beyond normative standards of trauma and recognise the subjective nature of this abstraction. What is traumatic for me may not be traumatic for you. It does not make it any less valid.
This is why we need to listen to minorities about minority experiences, ot allows us to root out the traumatic experiences occurring in society, and not just those which we recognise. When we invalidate another person’s experience, we are contributing to the immense suffering that is currently happening in our world.
Perhaps then, it is pertinent for us to take responsibility for the role we each take in the suffering of others and ensure that we are doing good with the limited time we have on earth.
Our psychological well-being is far from being solely the realm of medics. We each play a significant role in other people’s worlds.
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.
This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning:This article contains mentions of systemic mistreatment in the mental health setting, traumatisation, references to pathologizing theories and language, mention of cultural ignorance, and discussion of mental health conditions inlcuding cluster B diagnosis and misdiagnosis.
It seems to be common knowledge in the Autistic community that Cognitive Behavioural Therapy (CBT) by and large does not work for Autistic people. Lets dig a little deeper. The fundamental issue with CBT and other similar therapies is that they were designed around the predominant (or neurotypical) neurotype (Kelly and Farahar; 2021). These therapies were largely developed in the western hemisphere and therefore tend to adhere to western standards of ‘normal’. This presents the first of many issues, even before you consider the Autistic neurotype, not everyone will fit into those cultural standards.
According to NICE guidelines, CBT and related therapies should be adapted to be appropriate for Autistic individuals on a case by case basis, but the guidelines fail to discuss what these adaptations should be, based on input from Autistic individuals, and are instead somewhat generic in nature.
“Consider adapting the method of delivery of CBT for Autistic children and young people with anxiety”
NICE Guidelines (2013, updated 2021)
The guidance then goes on to offer very little meaningful advice beyond emotional recognition training and simplification of tasks. It is quite clear that the Autistic community has not been consulted on this guidance.
The above example is part of a much larger and more pertinent question; is the application of neuronormative mental health theory and therapies actually largescale gaslighting of neurodivergent individuals?
Whenever we look at supports for Autistic individuals or common “deficits” cited for those of us with that particular neurotype, a lot of it is centred around difficulties with emotional recognition, alexithymia, and our inability to mentalise another’s emotional state (Baron-Cohen et al; 1985). In fact, theory of mind posits that our inability to mentalise the psychological state of others leads to deficits in social communication and the ability to empathise. Perhaps then it is easy to see where therapies informed by this research are already beginning to fail their Autistic patients.
Psychological therapies start from the position that there is one correct way of experiencing the world, this in itself is neuronormativity. It assumes that the neurotypical experience is the standard that all should be trying to achieve. So when the Autistic patient enters the room, the therapist will first attempt to understand the Autistic person through the lens of neuronormative thinking, and then try to force the Autistic mind into a neurotypical box, and in turn apply their understanding of neurotypical mental health, onto a neurodivergent mind.
This is a fundamental problem because Autistics simply do not think and experience the world in the same way as a neurotypical. They can pretend to through masking, but as previously mentioned in this series, that comes with a great cost to wellbeing (Gray-Hammond and Adkin; 2021). How do we even know that Autistic people have the same experience of emotion? This would go some way towards explaining the difficulty Autistic people experience when trying to explain their inner world using neurotypical two-dimensional descriptors.
We are teaching children to label their feelings as happy/sad/excited, etc, when in reality, who experiences just one simple emotion at once? How many different types of happy or sad are there? Emotion is complicated, so assuming that there is a standard experience of emotion that we should all fit into (regardless of neurotype) is not only ignorant but blatantly ableist.
If we apply the theory of monotropism (Murray et al; 2005) to emotion, it becomes even clearer why standard psychological interventions are not appropriate for Autistics. Put simply, the theory of monotropism suggests that core autistic experience is related to differences in attention. It suggests that autistic people’s thinking falls into detailed “attention tunnels” in comparison to the attention of those with the predominant neurotype, whose attention is less detailed but more easily split over multiple subjects also described as polytropic thinking.
So if we’re focusing on an internal feeling or emotion, then typical language used to describe neurotypical emotion is not going to fulfil its purpose.
How many times have doctors misdiagnosed autism (especially in female presenting individuals) as Borderline Personality Disorder/ Emotionally Unstable Personality Disorder? How many times have Autistic people been prescribed medication for depression or anxiety when the problem was in fact Autistic burnout? Yet more evidence that neuronormative standards do not apply to Autistic experience.
This medical neuroprovincialism creates gaslighting. Applying neuronormative standards to Autistic people regarding emotional and mental health creates further suffering by further traumatising us, creating more masking, and in turn lowering our ability to cope and manage our mental wellbeing. Thus, we have the vicious cycle of patient-blame perpetuating itself around the premise that Autistics have an incorrect experience of the world, and that cycle makes our mental health worse more often than it improves it.
In truth, nobody experiences the colour green in the same way, at least not that can be proven. Experience of emotion is entirely subjective, two people rarely even look the same, let alone having an identical experience of their inner worlds. Solipsism tells us that we can not ever experience the world through another’s eyes or mind, yet here are the neurotypical masses telling us what we should or shouldn’t be feeling based on their own prejudiced standards of what they consider “normal”. Labelling us disordered when we can not fit into that restrictive worldview. To add insult to injury, they’re not even interested in asking us about our experience. They just push us through therapies that at best are mildly to moderately helpful, and at worst can retraumatise us.
We need to be consulted on what does and does not help us, outside of the setting of the neurotypical thought process. We need trauma-informed therapies (because we are hella traumatised by merely existing in society as it is). We need to guide our therapists on what we feel and experience by advocating for ourselves loudly and proudly, in a language that feels natural to us, instead of accommodating their lack of understanding. We need to present the idea that there is more than one way to experience feeling, and finally we need to accept that about ourselves and encourage others to do so.
Consciousness is not a one-size-fits-all. It is a dynamic and ever changing thing for the individual, and it is as unique as our DNA.
Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory of mind”?. Cognition, 21(1), 37-46.
For this commentary to make sense, it may be worth reading my other recent articles on the liminal nature of the neurodiversity movement and the reality of Autopia. My recent articles have all come from my recent preoccupation with creating a utopian neurocosmopolitan society, and I have used my writing to try and imagine what such a world might look like for Autistics.
When I wrote the article that is the subject of this commentary, I was not intending to denounce diagnosis, at least not in the world we currently live in. What I was trying to do was highlight how forcing people through an ableist and bigoted diagnostic system in order to gain access to support, further pathologises the Autistic experience.
Like many supporters of the neurodiversity movement, I take offence to the medicalisation of my neurotype. I feel it is inherently wrong to treat autism as a pathology. I do not believe that any Autistic people require fixing or curing.
My reasons for this are complicated, but in a nutshell; I believe that our current society judges us on our ability to create financial value and drive up profits, when we can not fit into that requirement, society deems us as having deficits and views those deficits as reducing our value.
When we can not meet our cultures standards, we are forced into the medical system, to prove our neurotype in order to attain the support that we need to survive.
Not only are we a Autistics forced to do this, but our family and carers are required to jump through the metaphorical hoops, often with little to no support. They face institutional violence and parent/carer blame the whole way.
The article I wrote was me dreaming of a society where everyone is treated as equal, no one is considered “standard” or “typical”. Things like universal basic income exist, social care has been reformed. Autistic people are no longer treated as broken or defective. We are not forced to prove we need support because the support is freely available to whoever needs it.
It was utopian thinking, and never did I intend to make people feel as if they were doing the wrong thing, or that I believe diagnosis is bad on current society.
I hope that with this commentary, people can further understand where my line of thinking came from, and understand the point I was trying to make.
Diagnosis is necessary on our world at the moment, but can we not dream of a better world? Where all are equal and supported. Where no one has to feel broken.