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The reality of how cure culture interrupts the neurodiversity movement
Scene from X-Men

Rogue enters and says "Is it true professor, they can cure us?"

Professor X answers "Yes, Rogue. It appears to be true"

Storm intersects "No, Professor. They can't cure us. You wanna know why? Because there's nothing to cure, nothing wrong with you. Or any of us, for that matter".
Scene from X-men

The above scene is quite poinient to the topic of this article. Here we have Rogue, a mutant who kills everything she touches, and Storm, who can control the weather.

One might be forgiven for not necessarily seeing the connection between this and Autistic experience, but it is in fact a very good allegory for the battle between the normative violence of cure culture, and the neuroqueering approach of a lot of the Autistic community. Rogue and storm disagree on the benefits of a cure because they both have different profiles of how they embody their Self and experience the world.

In much the same way, Autistic people who support cure culture are ostracised and spoken poorly of. I’m going to let you in on something, I used to be one of then. I longed for someone to make me “normal”. I was tired of being the outsider. I, of course, was lucky enough to discover the Autistic community. I learned how to co-exist with my particular profile of traits and intersections. I was taught how to make the best of being a marginalised person, and came to see the harmfulness of cure culture.

Not everyone has had the access to the community I have had.

There in lies the crux of the matter. The cult of normality, peddlers of normative oppression, face less scrutiny while our energies are spent fighting amongst ourselves. While hearing the harmful views of those who are yet to dismantle their internalised ableism is difficult, we need to give them the space to learn and grow with us. If we are fighting each other, we are not fighting the system.

This isn’t to say that we should excuse or accept harmful words or behaviour, more a commentary on the idea that everyone is at a different stage on their journey of discovery and growth. Much as we were brought in from the harsh cold of society, we need to create a space where those with less knowledge and self-acceptance are willing to listen to us and grow alongside us.

Cure culture has done so much harm. From the children being fed bleach, to the trauma Autistics experience hearing those stories, to the civil wars in our own communities. We need to find a way of showing that we understand.

This is what we need to understand; all of us have our own unique experience of being Autistic. Much as Rogue and Storm has vastly different experiences of being mutants, not every Autistic person has a profile of traits and intersections that is congruent with our own. Some of us have been so traumatised that we can not come to terms with our Self. We need to help people come to love who they are, even if that person has more negative experiences than we do.

We need to consider how we create a world that truly accommodates diversity, and not just the pretty, idealistic version of diversity that sells t-shirts and pays lip service during company diversity campaigns.

Stop blaming minority groups for mass shootings

There is a bitter irony as I begin to write this post. What many of you will not know is how I became a blogger. I wrote for an immensely popular outlet, I won’t name them, but they support Autism Speaks. I think just based on that, you can understand why I no longer write for them.

The very first article I ever published, my first outpouring of disdain at the violent hatred of the world we live in, was about people blaming mass shootings on mental health issues. To my surprise, it amounted to almost 20,000 views in 24 hours. Many felt very validated, but of course, the gun nuts of America jumped to the defence of guns. I assume they read the title and not much else.

So, here we are again. Over half a decade since that article was published. I feel it’s time to draw a line in the sand. The nonsense of the world we live in is taking too many lives.

Hearing about the mass shooting in Texas upset me. Not just because of the unacceptable loss of life, but because of the media reporting around the fact that the shooter was a trans person. I am aware that trans people live a life of near constant threats, and the focus on the shooters gender identity will not improve this.

But I am not Trans. I can’t tell you what this specific event is like because their are cultural privileges that I have, and they prevent me from understanding the reality of this particular shooting. I do, however, feel compelled to comment on the broader issue that this has once again highlighted.

Every time a mass shooting happens, it seems that the media will link it to a minority group. Somehow, there is always an underprivileged cultural subset that the salivating masses can turn their vitriol on. Mental health leads to mass murder, Autistic people are predators, Trans people are apparently indoctrinating children, and Black people are guilty of everything. The list of ridiculous accusations has gone on for so long that I won’t even begin to try and recite the whole thing.

Why does the world need to blame minority groups?

I believe this comes down to normativity and essentialism. When we consider the framing of minority groups in stories such as these, we have to consider that;

  • The world has been taught that there is one most “normal” sort of human. The right colour, brain, sexuality, gender, embodiment.
  • You are only worth as much as the body you are born into.
  • Those that fall out of cultural normality (read as; normative standards) are fundamentally less human than those that don’t.

So now we have a world of minority groups who are already traumatised beyond belief by the inhumane treatment of those with privilege beyond their own. We do become radicalised, to the extent (usually) that we will actively voice and enact dissent against the oppressive power structures of our normative world. Yes, some of us do take part in violence.

No, that doesn’t make us dangerous.

Think about it. Think about it really hard. Every country in the world has innumerable minority groups. In fact, if we measured minority as an identity itself, we would probably no longer be a minority, but instead a vastly diverse majority.

So we have a world full of minorities, and yet the vast majority of mass shootings outside of warzones happen in the US. I would venture a guess that even if you counted warzones, the US would still top the list. What is the variable that is being ignored? What can we change to make a difference.

It’s the guns.

Minority groups are not murderers. We are not the monsters you were taught to hide from as a child. Not once did I ask my mother to check for Trans people under my bed. The monsters are the lawmakers and lobbyists that keep gun laws in the US so lacklustre that a person can walk into a primary school with a semi-automatic and two pistols, ending three children’s lives, and the lives of three children.

The people who are responsible for this are the pro-gun cohort. They have the blood of those children on their hands. They have the weight of traumatised children and families that miss their loved ones. May it rest so heavy on their soul that they are forced to lay down their arms.

Stop blaming minorities for mass shootings. The problem is the guns.

York Health and Care Partnership are going to harm Autistic adults

Let me start by being candid. This is the third time in the past seven days that I have had to write an article like this. We’ve had an expose on the inhuman treatment of Autistic people in psychiatric inpatient units and let’s not forget that NHS Trusts in the south-west of England adding criteria to deny Autistic children assessment. Now, it seems that York Health and Care Partnership are taking some lessons in the same approach but for adult referrals.

I first came across this issue thanks to this article at York Disability Rights Forum.

There are three new, and very extreme, criteria being added to referrals for adult autism and ADHD assessments, that effectively mean the vast majority of assessments will be refused. The referral criteria are as follows:

Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place.

Risk of being unable to have planned life-saving hospital treatment, operations, or care placement

Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing
From York Disability Rights Forum article

These criteria are unacceptable, and will endanger the wellbeing of huge numbers of undiagnosed Autistic adults, who have been forced to survive childhood without access to their own identity already. The partnership is offering a self-assessment to people who do not meet this criteria which will not be diagnostically valuable, or provide access to things like medication for ADHD’ers. It will also not suffice as proof of disability for the benefits system.

I understand that with referrals skyrocketing, a heavy toll has been taken on diagnostic services. This does not make it okay to deny disabled people access to the validation and support that can come from diagnosis. At a time when the NHS should be demonstrating its importance, it is instead breaking the oath of “do no harm”.

Harmful doesn’t even feel like a strong enough word for this. Autistic people are significantly more likely to die by suicide. This is going to compound that. They claim this is a three month pilot programme. What are the intended outcomes? Of course, this will reduce the number of referrals, but we are sacrificing real people in the name of protecting budgets. Human life does not have a monetary value. We are not a commodity. We are living breathing creatures with complex inner worlds and feelings.

The fact that all of these stories are breaking in the lead up to autism acceptance month is not lost on me. The NHS has made it clear that there is no autism acceptance beyond what their budget will allow. If too many of us exist for them, they will just pretend we don’t exist. This is what happens when universal health care is run on business models. Human lives become less valuable than annual reports that earn you a financial bonus.

I am so done with this. I’m not just taking this lying down, and neither should you. We are a proud and supportive community of neurodivergent people, and we will have the last say on how we are treated. Whether you have a diagnosis or not, you are one of us, and I will fight for you.

NHS services in England’s South West are endangering Autistic children

Today, I came across an article by The Guardian that raises a life-threatening issue. It seems that due to a 350% increase in referrals for autism diagnosis amongst children since the pandemic, NHS managers have moved the goal posts and added extra criteria to meet before a child can be referred. Unless a child meets these criteria, they will not have access to diagnosis, with the irony being that early diagnosis could stop them from meeting this criteria; which indicates an extreme level of suffering to be required before getting the admittedly already pitiful support that is available.

Let’s look at the criteria, as discussed on the Sirona Website:

Who can be referred?
Children and young people meeting the following referral criteria can be referred :

Children and young people whose education placement is breaking down despite appropriate support (including those who are NEET – not in education, employment, or training – and those at risk of permanent exclusion, transfer, or long period of school refusal). This may include children and young people who need an Autism diagnosis to access the required specialist provision.  
Children and young people whose family unit is at risk of breakdown despite support from appropriate agencies (parents/carer and social care are unable to meet the children and young person’s needs, leading to risk of child protection proceedings and/or child needing alternative placement). This can also include children whose adoption is at risk of breaking down.
Children and young people in care or on a child protection plan for whom an assessment is needed (e.g., to inform placement planning). 
Children and young people who are open to Children and Adolescent Mental Health Services (CAMHS) with severe and enduring mental health difficulties (i.e., high risk to self or others) where an autism diagnostic assessment is required to support their formulation and care. Or children who are not open to CAMHS but are presenting with a serious risk to self or others (e.g., risk of exploitation, significant self-harm, dangerous levels of aggression towards others). 
Children and young people who are involved with youth offending services and/or are engaged in repeated offending behaviours. 
Children with very low levels of communication where the difficulties are likely to be associated with autism (usually Early Years)

This means that we are expected to wait until a child or young person is already in crisis before they will even refer them for diagnosis. It’s tantamount to negligence and threatens the wellbeing of a demographic that is already significantly more likely to die by suicide.

People on Twitter are also speaking out against these unethical criteria.

Tweets like this highlight the fatigue so many of us feel from trying to make sure Autistic people are supported.

What are we supposed to do when those who are supposed to support us only choose to do it when they are given no other choice? How do we fight back against the brazen demonstration of how inconvenient our existence is considered?

Autistic children and young people will end up in crisis and maybe even die due to rules like these.

This is not ethical, and it is a failure to ensure reasonable adjustments. It is an overt indicator that equality laws can be broken when it’s too inconvenient to follow them. The NHS needs to put a stop to this before more lives are lost.

We are Autistic, and we deserve to be consulted before such inhuman criteria are created.

For further reading about the failure of the NHS to support and protect Autistic people, please check out these articles:

CAMHS nearly killed me, and it’s not okay.

CAMHS in crisis: The systemic failing of Autistic people

Autistics Incarcerated: The dark underbelly of the NHS

Here is a petition to reverse these criteria changes

Autistics Incarcerated: The dark underbelly of the NHS

This evening, I took it upon myself to watch Channel 4’s documentary on the abuse of Autistic people in psychiatric institutions. As I sit here reflecting on the way the Autistic participants were treated by those meant to care for them, I will confess that I have shed some tears of my own.

I am one of the Autistic people unlucky enough to spend time in carcerative care.

I have witnessed restraint used as punishment. I have been sedated so heavily that it caused me to develop an irregular heartbeat. To this day, I do not publicly name the psych ward where this happened for fear of retribution. Such is the nature of the power imbalance between Autistic people and the mental health system.

The idea that an institution that is legally considered to be “a place of safety” can be so traumatic seems almost absurd. Yet, there are innumerable Autistic people locked away in these places, experiencing things that no human should. Things do not improve upon release; section 117 aftercare so often goes by the wayside.

Autistic people are treated, at best, as a nuisance in the staffs workplace. Staff so rarely seem to consider that they work in a place we are forced to live. The privilege is theirs, not ours. To assume that we should be grateful for being detained indeterminately is to fundamentally dehumanised us. Autistic people deserve softness and caring, not a lesson in how much the mind can handle before your inevitable demise.

This is an issue that the NHS fails to address year on year. I believe it’s because Autistic people are framed as burdensome and irritating in a system that our government has ensured is on its knees.

Now is the time to speak out. I would ask that if you care to share your own experiences, you do so by using the hashtag #AutisticsIncarcerated.

I choose those words because that is the nature of inpatient treatment. It is not a hospital environment. Each and every one of us deserves to know that we have a place to turn at our darkest moments. We shouldn’t have to fear seeking help.

Autistic people should not have to educate their therapist

I have had extensive therapy, as one might expect for a recovering drug addict who is also Schizophrenic. I have had mindfulness therapy, Acceptance and Commitment Therapy. I’ve had Cognitive Behavioural Therapy, trauma therapy, psychoanalytic therapy. I’ve also had courses of therapy that use mixed approaches. Thanks to the NHS here in the UK, I have recieved all this for free. The problem is that while free, it was time limited.

Here is why that has been a problem for me as an Autistic person.

So often, therapists have said that they are able to work with my admittedly rather complicated profile of experiences. In particular, they will often claim that they have experience working with Autistic clients. The problem is that fundamentally, they don’t have a clue. This has left me with a difficult decision; educate the therapist or endure hours of inappropriate therapy.

People don’t come to therapy because they are in a good place. In the UK, a lot of therapy is gatekept behind “thresholds” of distress. Most (if not all) NHS trusts currently operate on a framework of crisis-driven intervention, which means that a person has to be in crisis before they receive support. Why then are we expecting Autistic people to waste their spoons and therapy sessions teaching a therapist what life is like as an Autistic person?

When we approach a therapy session, we come with the expectation that the therapist is the expert. Being faced with a professional who has little knowledge outside of awareness courses and mandatory training not only places the onus on the Autistic person to educate them; it undermines our confidence in the effectiveness of therapy. Having a level of confidence that therapy can work is vitally important to the process.

Therapists who do not understand Autistic experience will often employ behavioural strategies and infer thought patterns that are overtly incorrect. This can leave Autistic people feeling like therapy is more of an exercise in gaslighting than something there to help them. When faced with this, Autistic people will often feel forced to explain Autistic experience to their therapist. This means that time is wasted, and the process itself can often be intensely triggering, making any crisis worse.

This is why therapists need to spend time engaging with the communities that they work with in not only a professional context but also in the context of being the learner to willing educators. It is not okay for therapists to expect free labour from those in crisis.

This is perhaps one of the biggest accessibility issues in the world of therapy. Until such time that it is resolved, Autistic people are going to be left out in the cold during their time of greatest need.

Post-normal childhoods: Neuroqueering education and play

Neuroqueer theory is often discussed in the context of neurodivergent adults. While a helpful tool in the liberation of Neurodivergent people, constraining it to just this section of society limits its potential. Neuroqueer theory, at its root, is a theory that intends to liberate all people rather than just the select few. It does this by teaching us the malleable nature of identity, culture, and the Self.

I personally I have discussed my idea of the Chaotic Self; a Self that is ever shifting and changing. The Self emerges and re-emerges from itself as a factor of our experiences and relationships with the environment and those within it. As we acquire new ways of rationalising and contextualising those experiences, we also learn new ways to subvert our own meanings and understandings, allowing us to fundamentally queer our very existence.

So, how does this apply to childhood education and play?

Current “traditional” education and play is built upon normative standards. Those who provided the knowledge it is built on were unaware of their privilege and acted to uphold systemic oppression, regardless of whether they intended to or not. What we have had in both historical and contemporary contexts is normatively violent and creates a power imbalance between the student and the teacher.

Every aspect of our growth and development is regulated and controlled through the milestones we are supposed to achieve, the times we are expected to achieve them, and the curriculum that a given authority feels is necessary to learn.

The issue with this approach is that it expects all children to adhere to these standards. If one can not achieve under normative standards, we are deemed to be disordered and troubled. We find ourselves undergoing behavioural intervention and medicated treatments in order to achieve what is important to others rather than ourselves.

So, how do we move beyond this cult of normality? Can one be an apostate of normality and still achieve great things? I propose that the starting place is simultaneously a thing of beautiful simplicity, with the potential for profound complexity. We encourage children to experiment with language.

Language defines every aspect of our understanding of the Self. Words we acquire from others move forward to become the words we apply to ourselves. The first thing we must do is gift children language. All language. Access to language is essential to our relationship with ourselves. We then must consider how a child might be empowered to explore and experiment with that language.

Children should not be taught to use descriptive language based on someone else’s view of them. We should allow them to identify themselves in whatever way they please. This can be done as a form of play, and as such, it is a vital part of our development.

Once a child is comfortable with playing through language, we can begin to work with them to consider how they can subvert and reimagine the meaning of language. Once a child is free of objective definition and allowed access to the fluid nature of subjective meaning, they have an infinite number of ways to engage with their Self. It sounds deceptively simple, but the effect of truly unlocking language to a child could be immeasurably life changing.

It teaches us the importance of what we say to children.

This is but one way of applying neurofuturism to childhood, or perhaps more accurately, post-normalism. If we are ever to live in a neurocosmopolitan world, we must explore the ways in which we raise children, and consider them helpfulness of standardising and regulating their development.

In the meantime, let children play with their language and identity. You might be impressed by the way they explore themselves, and it might even teach you a thing or two as well.

Autistic culture and the conservation of neurodiversity

I’ve worn many professional hats over the years. Perhaps it may be surprising to some when they learn that I didn’t spring forth from the womb clad in rainbow flags and infinity symbols. My undergraduate degree was actually completely unrelated to autism (in the literal sense); I studied forensic and archaeological science.

As part of my training in both forensic and archaeological practices, I had to learn how to conduct environmental impact assessments. Right now, you’re probably wondering, “Why the hell is David telling us this?” You will be unsurprised to learn that I’m going to relate this to Autistic culture.

You can’t consider an environment and its health without first considering the biodiversity that exists within that environment. Neurodiversity can, from an ecological perspective, be considered a form of biodiversity.

The world can be considered an environment consisting of a multitude of cultures and sub-cultures. In this context, we can consider a sub-culture to be a group within an existing culture that shares similarities with that larger overall culture but contains variations, or perhaps deviations, from the perceived normative standards. I would then like to position Autistic culture in an ecological class of sub-culture.

We share many similarities with the wider cultures within the environment. Thanks to the intersectionality of our community, we exist within multiple larger cultures. We do, however, have specific language and a sociality of our own. So, within the broad context of various human cultures autism exists as its own diverse nook.

Why is this important?

The ecology of an environment is a complex machination. Each seemingly insignificant aspect creates the balance required for each living part of that environment to co-exist with each other. Removal of even the smallest part of an environment can create a cascading effect that leads to the failure of a given ecosystem. With respect to cultures and sub-cultures, they are a necessary part of human ecology.

As a species that evolved to be interdependent, neurological diversity allows for the development of the means of not just co-existence with our fellow humans but also the survival of our species. This, then, is why Autistic people find themselves so concerned with cure culture and eugenics. The ramifications of the erasure of Autistic sub-culture are far-reaching, beyond the scope of our mere elimination from the gene pool. It is possible that our erasure could threaten the ecological balance of the human environment.

Neurodiversity has a farther reach than merely our right to exist as neurodivergent people. It considers our need to exist. Autistic people are not just an aberration. We are not a deviation from objective normality. We are a necessary part of human cognition. Human existence, like the existence of any species, is predicated on its diversity. Reduction of biodiversity can and will ultimately lead to our failure to thrive.

So, with the consideration that we are necessary for the existence of the human race. Perhaps it is time to stop making us “indistinguishable from our peers.” It’s not just Autistic people who are being harmed by attempts to reduce us, it’s humanity itself.

Spectrum 10k and further misleading information is circling

I’m going to start with an admission. The text-based images in this article came to me via a DM. I am yet to find their original source, and as such, I can not confirm whether the people behind Spectrum 10k wrote this. I do, however, feel that as these statements are out there, it’s necessary to address the misleading information contained within.

Below are the screenshots that I have received. I will address this point by point to the best of my ability.

1. “Spectrum 10k are not looking for a prenatal test for autism”

This technically true if you take their publicised aims at face value. I do, however, feel it’s necessary to draw your attention to a study they are conducting into using amniocentesis and hormone levels in utero. They go on to talk in the screenshot about how a prenatal test could not work using genetics alone; perhaps Baron-Cohen would then like to address his involvement in a prenatal study that assesses more than genetics as a tool for prenatal screening.

I have written more about the aforementioned study in this article.

2. “We do not support cures or treatments for autism itself

This is clever wording. It leaves it open to justify historical, current, or future involvement in cures and interventions for aspects of Autistic experience that technically fall outside of the remit of “autism itself”. This, of course, is conjecture to a certain extent. I do believe that we have to consider this wording in the wider context of the unethical responses to valid concerns by Autistic people.

Unfortunately, there is more to consider. We know that at least one of the leading researchers on the Spectrum 10k team has direct links to eugenics and curist rhetoric. We know that team members have had involvement with organisations that have overtly stated their intent to eliminate Autistic people from the human gene pool.

They claim that the study will not be used to create prenatal testing for autism but fail to address the concerns that these further studies and associations outside of the study raise. To be clear, we have had no reasonable explanation of how Spectrum 10k and the amniocentesis study will not work in tandem to increase the likelihood of a prenatal test. We have also had no meaningful response to our concerns around team members’ involvement with eugenics organisations.

Until such time that the Autism Research Centre can offer an actual alternative position, without subterfuge and misleading statements, I will still be encouraging you to boycott their research and speak out against them.

For more information on Spectrum 10k you can read our original statement here and a vast array of writing about it on this page.

The politics of existence and the regulation of Neurodivergent experience

For a long time now, Autistic people have been fighting to have the contested title of Autism Spectrum Disorder removed from discourse of medicine. We feel that as an emerging culture, being Autistic is an identity rather than a medical matter. When considering one’s identity, we have to consider all avenues of discourse surrounding it. Today, we’re going to consider politics.

Whether you want to admit it or not, politics is relevant to the lives of every single human. There isn’t a single aspect of human life that doesn’t have an association with beaurocratic regulations and inaccessible power structures. In the case of Autistic and otherwise Neurodivergent people, a unique problem is posed to those in power. For a current system to function, people need to assimilate into normative standards. How can one regulate another’s existence in such a way?

The answer is relatively simple. Psychology. More specifically, psychometry. By quantifying and regulating the expectations for people development and behaviour, you can position those who do not assimilate as outliers. You create a binary of in-group versus out-group. This allows those in power to create a disconnect between the normative world and those who do not fit in.

This is how society oppresses neurodivergent people. We are positioned as less-than-human using psychological metrics that have been arbitrarily created. Once a group has been dehumanised in such a way, it’s easier to make people turn on each other. When positioned alongside the idea of finite resources, we can be viewed as an unnecessary drain on resources rather than humans who have rights. People are taught that more rights and resources for us means less for them.

And so, by quantifying human development and behaviour, governments and authorities have effectively regulated human expression of identity through the politicisation of our very existence. This is why the push to have Neurodivergence depathologised is so important. It’s the first step towards a world in which those in power no longer control how we think, feel, and embody ourselves.

Until such time that this is achieved, we have to make peace with the uncomfortable truth that our identity and the wider perception of it is not a matter of our own choice.

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