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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.

Ben Nelson-Roux and Chris Nota: Two tragic tales of systemic failings

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

Trigger Warning: Death, drug and alcohol use, suicide, systemic failure, mental health crisis, inpatient psychiatric care.

The 13th of September 2022 saw the opening of inquests into the deaths of two teenage boys.

Ben

On the 8th of April 2020, Kate Roux forced her way into the room of an adult hostel where she found Ben Nelson-Roux, her son, dead, having been there all day. This happened despite multi-agency involvement and repeated attempts to seek help for her son. Ben was known to be “high-risk” of child criminal exploitation. He was 16 years old. What “high-risk” actually means, is that he was being exploited criminally, and services knew about it. There was no “risk”, this was actively happening. Consultant Psychologist, David Loveday-Simms described him as having a “chaotic and risk taking lifestyle”, this being part of a long history of victim-blaming. He also stated that Ben had started smoking cannabis at age 12. Where was the support for a psychoactive drug user at such a young age?

Loveday-Simms interviewed Ben shortly before his death, and concluded that “he was not a slave to anyone”. Demonstrating a complete lack of understanding of child exploitation. It is frankly terrifying that a CAMHS consultant psychologist demonstrates so brazenly, a lack of understanding around power-exchange, coercive control, modern day slavery, and child exploitation.

That’s not the worst bit.

Loveday-Simms said “I agreed with Mrs Roux that Bens accommodation posed a significant risk to Ben” upon his final encounter with Ben’s mother, before his tragic death. It appears that Ben had been housed as a known child, vulnerable to exploitation, with a history of drug use, and documented attempts to take his own life, in an unsupported hostel for homeless adults. His mother feared that he would die within weeks if correct support was not put in place.

The consultant psychiatrist told the coroners court that Ben would use cannabis and other drugs heavily, which left him paranoid. The night before he died, Ben’s mother had begged for him to be sectioned under the mental health act.

Ben was Neurodivergent, and according to his mother had been struggling with “ADHD, severe mental health issues, and drug and alcohol abuse for years”.

Chris

On the 7th July 2020, a young man fell to his death from a bridge in Southend-On-Sea. It is reported that following a deterioration in his mental health, due to the death of three relatives, he had turned to cannabis to calm himself. It wasn’t Chris’ first visit to this bridge. Paramedics had previously found him at this same bridge on June 27th 2020.

“Coroner Horstead said to Dr Ball: “On June 29th your colleague said you couldn’t keep him [Chris] safe. Was that a view you agreed with?” Dr Ball replied: “That was a view of the whole team that we couldn’t keep him safe at the time.” The coroner said: “Your colleague said there needs to be a hearing for funding. It was unanimous as a team that you couldn’t keep Chris safe in the community?””

Essex Live, (15/09/2022) Click here for more

Chris was Neurodivergent. It’s reported that Chris’ mother Julia had expressed concerns that she felt they were not meeting the needs of her son. She felt he needed specialist autism services. His mother feared that he would die without the correct support. Specialist services were not made available to him.

Chris was Autistic with a learning disability, a drug user, and had previously been sectioned under the mental health act for psychosis. He was 19 at the time of his death.

Discussion

These two deaths were almost three months apart to the day, and 231 miles in distance. Two neurodivergent teenagers. Two vulnerable people who tragically died.

Stories like these are not news to us. They don’t always result in death, sometimes it results in prison, sometimes in long-term hospitalisation under the mental health act. They all follow a similar thread. I don’t think we would be doing either of these young people justice, or the people we work with, if we didn’t acknowledge how far back the misunderstanding of neurodivergence and systemic failings go. It starts in healthcare with lack of healthcare access and a lack of up-to-date knowledge. Parent and victim blaming plays a big part. Discrimination based on stereotypes surrounding young males with “behavioural issues” also play a significant role.

The mess and the underfunding in the education system. The minefield that are Education, Health, and Care Plans (EHCP’s). Lack of social workers with specialist knowledge in neurodivergence, or indeed ANY professional with specialist knowledge.

This should not have to happen in order for people to realise that the system is broken; but that isn’t even happening, there seems to be no change on the horizon. We have a national problem, loads of Neurodivergent people are suffering unnecessarily. In our experience, services just don’t know how to support neurodivergence. Services aren’t designed or accessible for neurodivergent people.

But what would we know, after all, we are just neurodivergent people.

To read more about issues raised in this article, please see the Creating Autistic Suffering series on this website, the first article of which can be found here.

Is mental “illness” actually the brain trying to protect itself?

Up until about a year ago, I still sat firmly in the camp that, while I viewed myself as multiply neurodivergent, I was mentally ill. Over the past year I have been unlearning this lesson, and realising that mental “illness” is completely unquantifiable, and instead, I was suffering because I had been repeatedly traumatised, and then lived in a world incapable of accommodating the particular neurodivergence I had acquired. Psychosis.

People hold on tightly to the idea that they are mentally “ill”, and understandably so. The deficit model of mental health has been pushed on us quite successfully, but what if it’s not the person who is ill?

Consider depression. A person experiences a traumatic event (remember, what is traumatic to me, might not be traumatic for you) and starts to feel as though nothing goes well for them. They withdraw from their environment and isolate. Is this an illness, or is this the human brain doing it’s best to protect itself from trauma?

Now consider that the cultures with live with, particular in western society, actively punish people who have experienced trauma. There is a lack of welfare benefits, inadequate and under resourced wellbeing services, and let’s not forget that humans are effectively judged by whether or not they make the right amount of profit while performing a neurotypical display so as to not make others uncomfortable.

To me it seems clear where the suffering is actually stemming from, and it isn’t the person.

However, let me be clear, this does not mean that people should stop taking their medication. I take medication, and it helps a lot. Attention Hyperactive people take meds to help them focus and perform daily tasks.

What I am saying is that while medication can be an important part of wellbeing, we need to recognise that this pathologisation of our human experiences has (for the most part) normalised our suffering.

In the same way that Christianity told factory workers during the industrial revolution that being in poverty guaranteed them riches in the afterlife; pathologising neurodiversity has told us that we are the broken, rather than letting us turn the lense on an oppressive world.

Sadly, many institutions (medical included) have a tendency to serve the overall economic climate, rather than the people they are supposed to help.

So where do we go from here?

We need to build on the neurodiversity movement and paradigm. We need to recognise that despite our suffering, we are not the sick ones. What is sick, is the society we live in. When enough of us stand up and say no, society is forced to change. We need to recognise the rampant oppression and abuse of power, and seriously consider it’s role in the development of so called psychiatric “disorders”.

In short, brains do what they can to try and protect us from suffering, sadly, society continues to inflict pain.

It’s time to drop the disorder.

Neuronormativity, the pathologisation of Mental health, and the normalising of suffering

In recent years mental health has become more widely talked about, thanks to the popularisation of the “it’s okay not to be okay” trope. On the surface this is a wonderful approach to the normalisation of Mental health issues, but does it have a darker side?

There are currently over 300 “disorders” listed in the DSM 5, the diagnostic manual used by psychiatrists around the world. One could imagine that between them they account for the vast majority of human experience; a concerning thought to say the least.

What benefit does this serve us as a society?

Realistically, it only benefits those who adhere to normative standards.

We’ve been taught that mental health concerns are an illness, that we have a pathology that requires treatment. Despite this, there is no biomedical test that can definitively diagnose any of the numerous entries in the DSM. So perhaps there is something more to the pathologisation of human experience.

Our society is broken, it has fixed rules that apply to fewer and fewer people, while trying harder and harder to assimilate people into it’s normative standards of behaviour. Szasz would argue that this approach serves to provide a sort of social control over us.

So now we live in a society where anyone who doesn’t fit cultural standards of normal is considered “sick” or “ill”.

Thus, we reach a point of starting to understand why “it’s okay not to be okay” might have a darker side to it. Mental health issues (in my opinion) arise from living in an environment that can not fulfill the individuals needs. An environment that consistently traumatises those living in it.

However, we are now normalising human suffering. It’s okay to say “I’m not okay” but we must never normalise human suffering. When we do or say things that uphold the pathology paradigm, we are allowing our oppressive society to continue on its harmful path.

We need to do the work to rebuild society into a brighter place, thar meets the needs of the many, and not just a selected few. We do this by recognising that neurodiversity is about more than Autistic and ADHD experiences.

The change starts with us, and it ends with a brighter future.

It’s never okay to suffer.

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.

“Why are you so quiet?” Autistic voices and the fight to be heard
Post by elixirchai

Text reads

"you've been told all your childhood that it's rude to interrupt. and now you have grown up and speak only when there is a pause in the conversation. but suddenly you understand that neurotypicals are all interrupting each other and this is quite normal. but you are already used to not interrupting and waiting for a pause in the conversation and do not understand how to normally maintain a conversation in order to talk, but at the same time not to seem rude "
This image has alt text

Society is built upon a surprising number of rules that, when fully considered, seem rather arbitrary. In actual fact, societies rules are not arbitrary at all. They are deliberately designed to keep minority groups quiet while amplifying the voice of the oppressors.

I think most Autistic people have come across this particular micro-aggression. Sat in a social situation, listening, waiting for our chance to join in…

“Why are you so quiet?”

It’s a loaded question, because the truth is that society has conditioned us to be quiet. Don’t interrupt, don’t shout, don’t swear, don’t do anything that might upset the status quo. A status quo that upholds the victimisation of Autistic people while allowing those who want us eradicated to hog the microphone, so to speak.

It’s hard enough to know when my turn is in a conversation, let alone when the entire room is breaking the very rule that has caused my bewilderment in these situations. Neuronormativity dictates that everyone’s voice and opinion is equal, while silencing those who are harmed by this worldview.

Why is all of this relevant? Because I want you to understand why the titular question is micro-aggression.

Back to the social situation, I am lost and scared in a neurotypical environment, people speaking over each other and interrupting. Meanwhile my pavlovian ass is adhering to the rules that have been instilled in me since I could first speak.

What does this mean for Autistics trying to be a part of the conversation within the Autistic Rights movement?

It’s not just a room full of people speaking over each other and drowning us out of the conversation, it’s a world of people who think they know better. The irony being that when they don’t give us the chance to speak out against their rampant pathologisation of our identities, they use our silence to uphold their outdated and harmful beliefs about us.

The silence they instil in us by never giving us the chance to talk, is the very thing they use to justify calling us an epidemic. We social outcasts can’t possibly contribute to the economy through silence, can we?

So, sod the rules.

I will speak up and over the navel-gazing masses who believe me to be broken. I will stand in defiance of their arbitrary social rules, and I will live a life that feels right for me and my neurokin.

We are not broken, we are not ill.

We are quiet because you don’t give us the opportunity to step up to the proverbial mic.

So yeah, I hope that answers the question.

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