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Jun 5 2023
Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look

This article was co-authored by Tanya Adkin and David Gray-Hammond

Monotropism is a theory of autism. It is used interchangeably as a theory and also a trait that describes a style of attention. It suggests that Autistic people tend to have singular but highly detailed tunnels of attention, as opposed to spreading their attentional resources across multiple subjects (Murray, Lesser & Lawson, 2005). It has succeeded where other theories have failed by offering an explanation for every element of Autistic experience. In this sense monotropism is the only universal theory of autism.

One could consider it the “engine” of Autistic experience. Whereby every other part of Autistic experience can be traced back to monotropism in some way. It is at the core of our experience.

Emerging research is showing that both Autistic and ADHD people strongly identify with many aspects of monotropism as a way of describing their experience (Murray & Hallett, 2023). More on this can be found at this virtual presentation. It comes as no surprise then that monotropism is of significant importance to those who identify as both Autistic and ADHD, termed AuDHD.

Psychotic phenomena is another shared experience for many Autistic and/or ADHD people. 34.8% of formally identified Autistic people have experienced psychosis with up to 60% of Schizophrenic people also showed traits of autism (Ribolsi et al, 2022), In terms of the cross-over with ADHD, 47% of those diagnosed with childhood onset of schizophrenia experienced attention differences and hyperactivity in childhood, and in a sample size of 100 adults with psychosis, 32% reported attentional differences in childhood (Levy et al, 2015).

From this we can see that there is a significant overlap between the AuDHD experience and psychotic phenomena. When we look at this through the lens of monotropism, it begins to make more sense.

Monotropic Split

Monotropic split refers to a very specific type of attentional trauma experienced by monotropic people who are regularly exceeding their attentional resources (Adkin, 2022) in an effort to meet the demands of living in a world designed for non-monotropic (polytropic) people. It inevitably leads to burnout.

Atypical Burnout

Autistic burnout refers to a state of exhaustion created by using up all of your internal resources.

“Autistic burnout is often used by autistic adults to describe a state of incapacitation, exhaustion, and distress in every area of life. Informally, autistic adults describe how burnout has cost them jobs, friends, activities, independence, mental and physical health, and pushed them to suicidal behavior.”

Raymaker et al (2020)

Because Autistic burnout is described as a state of exhaustion, one would assume, that for many Autistic people observationally it can look like depression, and as such tools are being developed to differentiate between the two. However, exhaustion does not always mean that you are bed-bound, observably tired, and, indeed, displaying observable traits of depression. Many people with depression do not fit typical criteria, which is then referred to as high-functioning depression (useful!).

This is likely because the medical model has some sort of obsession with observable, diagnosable, traits. Many Autistic people are unable to stop and burnout. This may be because they are also ADHD, they may have interoceptive differences resulting in alexithymia and a lack of recognition of tiredness. They may simply have to work or raise children.

This may look like meerkatting and hypomanic behaviour (Adkin & Gray-Hammond, 2023) in addition to loss of skills and reduced tolerance to stimulus (Raymaker et al, 2020).

Meerkatting

Lovingly dubbed “meerkat mode” by Tanya due to the heightened state of vigilance and arousal it presents, it involves constantly looking for danger and threat. It is more than hyper-arousal, Tanya believes that it is actually an overwhelmed monotropic person desperately looking for a hook into a monotropic flow-state.

This is not just sensory hyper-arousal, it is the tendency of monotropic minds to seek out a natural and consuming flow-state to aid recovery from burnout and/or monotropic split. Because of the heightened sensory-arousal and adrenal response that comes with it, monotropic flow becomes difficult to access, leading into monotropic spiral.

Monotropic Spiral

Tanya’s original concept of Monotropic spiral results from the inertia of monotropic flow. It may involve obsessive-compulsive type occurrences of rumination about a particular subject of experience that pulls the person deeper and deeper into an all-consuming monotropic spiral. Associative thinking that starts connecting this to anything and everything, seemingly like an ever increasing black-hole (Adkin & Gray-Hammond, 2023; Gray-Hammond & Adkin, 2023).

This can lead to the development of apparent loss of insight into ones own mental state and reality as described by the general population.

Psychotic Phenomena

Monotropic spiral is not psychosis. It is rather the vehicle that carries the person into psychotic phenomena, and maintains its inertia. Much like a star collapsing on itself, the resultant black-hole sucks in everything in its vicinity and is all-consuming.

A person experiencing monotropic spiral may lose insight and their sense of Self, compounded by a decoupling from shared reality. People can experience hallucinatory events, especially when alexithymic, making it difficult to differentiate between external sound and one’s own internal monologue. We can experience paranoia and rejection sensitive dysphoria to the point of delusion, it’s unclear where the line between this and fully fledged psychosis lies. We can also experience catatonic events and extreme lability of our mood, ranging from suicidally depressed to overtly manic and elated.

This may be why criteria for conditions such as schizophrenia and bipolar are so frequently met in the psychiatrists office. In a world that traumatises us by design, these phenomena may not be as atypical as we are led to believe.

Concluding thoughts

Are we looking at three separate occurrence that commonly happen together, within an observational model? Or are we looking at chronically stressed and burned out monotropic people, that due to the infinite possible interactions with an individual person’s environment, may observationally appear distinctively different?

Perhaps then we should stop thinking in terms of:

Autistic person + Environment = Outcome

instead considering:

Monotropic person + Environment = Outcome

Chronic stress or stressful life events have long been studied as a key contributing factor for the onset of psychotic phenomena (Philips et al, 2007) but the occurrence and impact of stress for monotropic people is vastly different, but it is not yet widely understood. This is because of the lack of training and rampant neuronormativity in mental health services (Gray-Hammond & Adkin, 2022); the antidote to which is neurodivergence competence (Gray-Hammond & Adkin, 2023).

Instead, we keep throwing money in the wrong direction and leaning on carcerative care to make the problem go away. If we can’t see it, it doesn’t exist, right? Seems to us like we should just fix the environment. Maybe that’s our “rigid” black and white thinking.

References

Adkin, T. (2022) What is Monotropic Split? emergentdivergence.com

Adkin, T. & Gray-Hammond, D. (2023) Creating Autistic Suffering: What is atypical burnout? emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2023) Creating Autistic Suffering: CAMHS kills kids. emergentidvergence.com

Gray-Hammond, D. & Adkin, T. (2022) Creating Autistic Suffering: Neuronormativity in mental health treatment. emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2023) Creating Autistic Suffering: Autistic safety and neurodivergence competency. emergentdivergence.com

Levy, E., Traicu, A., Iyer, S., Malla, A., & Joober, R. (2015). Psychotic disorders comorbid with attention-deficit hyperactivity disorder: an important knowledge gap. Canadian journal of psychiatry. Revue canadienne de psychiatrie, 60(3 Suppl 2), S48.

Murray, F. & Hallett, S. (2023) ADHD and monotropism. monotropism.org

Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139-156.

Phillips, L. J., Francey, S. M., Edwards, J., & McMurray, N. (2007). Stress and psychosis: towards the development of new models of investigation. Clinical psychology review, 27(3), 307-317.

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., … & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in adulthood, 2(2), 132-143.

Ribolsi, M., Fiori Nastro, F., Pelle, M., Medici, C., Sacchetto, S., Lisi, G., … & Di Lorenzo, G. (2022). Recognizing psychosis in autism spectrum disorder. Frontiers in Psychiatry, 13, 768586.

Tanya Adkin 0 Comments
Jun 3 2023
Autism and psychosis: The elephant in the room

I am Autistic and ADHD, some might affectionately refer to me as AuDHD. However, to think that these two diagnostic categories tell the whole story of my neurodivergence is to miss out on a significant part of my experience of our shared reality.

The truth is, I don’t always experience our shared reality. My name is David, and I’m Schizophrenic.

Psychosis rarely makes it into the discussions of “mental health awareness”. In fact, most people view those like me as dangerous and incapable of taking part in the world. Many assume that people like me spend their lives in psychiatric facilities, taking part in unstimulating arts and crafts and therapy sessions. Some may think of us as criminally insane, restrained in a room, while having medication forcibly given to us.

While not totally inaccurate, I have spent time as an inpatient, and a lot of us are regular people with regular lives.

You might be asking yourself where my being Autistic and ADHD fits into this all. In this study they found that nearly 35% of formally identified Autistic people showed indications of psychosis, with up to 60% of Schizophrenic people showing Autistic traits. Statistics like this indicate that psychosis and Schizophrenia are an important point of discussion that is in no way being discussed.

To an extent, I understand why. The neurodiversity movement has done a lot of work to position itself away from things traditionally viewed as “mental illness”. It does, however, demonstrate the ableism and saneism that is present in the Autslistic community.

The fact that I experience madness is a part of my neurodivergence. Schizophrenia is neurodivergence, just like autism and ADHD. Like ADHD, many of us take medication to help us perform to the demands of neuronormative society. Just because psychosis and schizophrenia are viewed as mental illness, does not mean that it is mental illness.

The Autistic and otherwise neurodivergent community could do a lot to support people like me. By embracing us as neurokin rather than treating us as an undiscussed intersection, we become empowered to break free of the chains of the pathology paradigm. Is that not what we all wish for?

I know that out there, many people like me keep themselves contained and quiet. We need to dismantle the stigma and saneism in our community so that people can be openly psychotic without fear of being rejected, criminalised, or even killed. More often than not, the biggest risk we present is to ourselves.

I love the Autistic community. The things I have learned during my time among you all reach further than merely affirming neurodiversity. I have come to understand that things such as atypical burnout are inextricably linked to the development of my psychotic experiences. This is the good that open communication can affect those of us for whom reality is malleable.

The time has come for people to stand true to who they are. It’s time for psychotic people to open up the conversation and support each other into a liberated future. All I ask is that my Autistic comrades give us the space and compassion to do so.

To read more about my experiences of madness and schizophrenia, please consider purchasing a subscription to my substack

David Gray-Hammond 1 Comments
Jun 2 2023
The relationship between queerness and being Autistic

“Queer is a term used by those wanting to reject specific labels of romantic orientation, sexual orientation and/or gender identity. It can also be a way of rejecting the perceived norms of the LGBT community (racism, sizeism, ableism etc). Although some LGBT people view the word as a slur, it was reclaimed in the late 80s by the queer community who have embraced it.”

stonewall.org.uk

I am queer, and I am also Autistic. In fact, it would be more accurate to say that I’m queer and multiply neurodivergent; I am not just Autistic, but also ADHD and Schizophrenic. Some might wrongly assume I should keep my queerness out of discussions of neurodivergence, but the two are inextricably linked.

As an Autistic person, I find myself constantly questioning the status quo. Even before the discovery of my neurodivergence, the concept of normality felt painful and alien to me. I used to believe that normality (perhaps more accurately, normativity) consisted of arbitrary rules, but I realise now they are not arbitrary at all.

Normativity is designed to oppress those who do not comfortably fit into it. For Autistic and otherwise neurodivergent people, we struggle to fit into the system because of our neurology. For queer people, we do not fit into the capitalist fairy tale of binary gender and monogamy within the confines of heterosexuality. This is neuronormativty and heteronormativity respectively.

The relationship between the two lies in my abject rejection of normativity. I have neuroqueered myself into a fluid and radical identity that stands opposed to what colonial society wants me to be. This is more than just “acting Autistic”. I embrace queerness in all aspects of my life, sexuality included.

Queerness in this respect is not solely about who you are or who you sleep with. For me, my queerness is an act of defiance, a refusal to be contained. Being queer leaves me the space to be whomever I wish, to explore avenues that society would rather cordon off from me.

If I were not Autistic, perhaps if my particular mix of neurodivergence were different, I would not have this drive to liberate myself from the cult of normality. We were sold the lie of essentialist identities, and my bodymind is painfully aware of its dishonesty. I am queer because the world does not want me to be queer.

To be contained into fixed and sanctioned identities is to entangle the Self in the chains of normativity. Queerness, then, is the angle grinder cutting through those chains. I am openly queer so that it may be safer for others to be queer. My pride is not egotistical, but a refusal to be ashamed of any part of my being.

I reject normativity in all kinds, including the identity politics of my perceived peer groups. None of this would happen if I were not Autistic.

David Gray-Hammond 0 Comments
May 22 2023
PDA: Are we repeating the same mistakes we’ve already made?

This article was co-authored by David Gray-Hammond, Tanya Adkin, and Autball

If a tree falls in the woods and no one is there to hear it, does it still make a noise?

While a lot of PDA literature, including the recent practice guidance, does indeed state that non-speakers and intellectually disabled Autistic people can have a PDA profile, are we ignoring the elephant in the room?

What does PDA look like in non-speakers and intellectually disabled Autistic people?

Nobody seems to know.

“Those with severe IDD were excluded from some of the analyses regarding the rate of PDA in subgroups, given that it is difficult to envisage the whole PDA phenotype developing in an individual with severe or profound general cognitive dysfunction.”

Gillberg et al (2015)

It seems as if no one has even asked them about their experiences.

“For this study, only data from parents who reported their child to have mild or no learning difficulties/intellectual disability were included in the analysis.”

O’Nions et al (2014)

The above quote was taken from a paper called “Development of the ‘Extreme Demand Avoidance Questionnaire’(EDA‐Q): preliminary observations on a trait measure for Pathological Demand Avoidance.” It literally sought to develop, and did develop, a tool for the identification of extreme demand avoidance/PDA. While guidance does say that the EDA-Q is not a diagnostic tool, they also say the following:

“Nevertheless the EDA-Q is useful in assessments”

PDA Society Practice Guidance

Much in the way that historical research around autism has looked at young, white boys, creating bias in the diagnostic criteria (which is responsible for an unfathomable amount of harm); we are creating diagnostic (but not) tools for PDA that exclude intellectually disabled Autistic people. No wonder we aren’t finding them!

There seems to be some very familiar narratives appearing around PDA.

There is a suggestion of a spectrum of which PDA only exists in those with average or above average IQ’s. This is disturbingly reminiscent of Asperger’s and the sub-categories of autism that were consolidated in the DSM 5. The era in which PDA was conceived was the era of the spectrum. It seems that we left PDA behind.

One of the reasons these sub-categories were consolidated is because of the lack of diagnostic consistency, much like we see within the PDA narrative now. We have clinicians refusing to accept it’s existence, additions and adaptations to criteria, the not so subtle suggestion that PDA can only exist within a certain type of cognitive function. Those that think it is not exclusive to Autistic experience, and those that think it is a trauma-response or highly sensitive neuroception. There is no agreement as to what PDA is. As such, it’s no wonder that so many clinicians are refusing to accept it’s existence.

Another one of the reasons for the consolidation was the tendency to dismiss the needs and struggles of those that were labelled “aspergers” or “high functioning”, versus the ignorance of autonomy in those deemed “low functioning” and the attribution of any co-occurrences to “severe autism”. Is the reason we are not identifying intellectually disabled PDA’ers because those driving the narrative are attributing any additional needs to “severe autism”? This would also explain the exclusion of non-speakers. They have not moved on from the spectrum era.

We also need to consider “Aspie supremacy” where by a group of people considered “aspergers” felt that they were superior and separate to “general Autistics”. We are seeing the same thing arise in corners of the PDA community and we believe that the exclusion of intellectual disability from the narrative is contributing to this.

There is literal and blatant exclusion of non-speakers. This is done by leaning heavily on speech and language, and “high verbal ability” in the suggested identification of the PDA profile. Again, have we learned nothing? The long held assumption, that non-speaking meant non-thinking and non-feeling, seems ever prevalent in narratives around who does or does not fit the criteria for PDA.

We are not saying that PDA does not exist. The authors of this are either PDA or have PDA children themselves. What we are concerned about is the proliferation of harmful and exclusionary narratives, and the way they create division from the community. The things that are often most helpful in understanding one’s neurodivergence is a consistent and inclusive idea of what that means. We have often discussed the trauma that Autistic people experience, could the narratives around PDA be contributing to that?

If the professionals who are trying to control the positioning around what is PDA can not even agree without arbitrarily excluding people, maybe they should back away. Where is the voice of PDA individuals in the development of research and guidance? The Autistic community as a whole tends to do far better at defining and explaining Autistic experience than any observational model, we can see this in the leaps we have taken in research. It’s time that PDA individuals were offered the same privilege.

Learn from past mistakes, in an effort to not repeat them. So in answer to the question “if a tree falls in the woods and nobody is there to hear it, does it make a sound?” YES. It does. Does PDA exist within intellectually disabled and non-speaking communities? Just because researchers haven’t decided that it’s worth looking at doesn’t mean the answer is no.

David Gray-Hammond 0 Comments
May 20 2023
Autism and ADHD diagnosis and the problem with cultural competency among diagnostic professionals

It’s no secret that diagnosis in the UK (and, in fact, the world at large) is increasingly difficult to access. I have written at length about diagnosis, such as this article on why getting a diagnosis is so difficult, and this piece considering the issues with current diagnostic criteria. Whichever way you look at the current situation, it’s pretty dire.

Currently, there are around 700,000 Autistic people with 122,000 people with am open referral for diagnosis between July 2021 and June 2022. In terms of ADHD, it is estimated that a total of 2.6 million people meet the diagnostic criteria. Autistic children are waiting up to five years for an appointment, with many adults having to go down the private route to obtain a diagnosis. The situation is not any better in terms of ADHD with people waiting (again) up to five years for assessment.

The problem, however, is more complicated than just waiting times. Assuming you can get a referral in the first place, many professionals have very rigid and stereotypical views on how autism and ADHD present in individuals. At this point, I feel it necessary to mention the long-held and deeply inaccurate belief that these diagnoses belong to little boys. This is a view that has been perpetuated by biased research and misinformed media offerings.

This culminates in a culture within which Autistic and ADHD individuals are misdiagnosed or rejected from the diagnostic process for not fitting the diagnostic criteria written in the DSM and interpreted by the diagnostician.

What we are talking about here is a lack of cultural competency. Specifically, we are talking about the concept of neurodivergence competency as conceptualised by Tanya Adkin and written about by the both of us. As you will see from the above linked article, it is not enough to be “neurodiversity affirming”, one needs to have the foundational knowledge and nuanced perspective provided by engagement with the community in question.

This is what is missing. Professionals who diagnose autism and ADHD rarely have cultural experience. In my opinion, if your job is to identify neurodivergence, you should be active in the communities to whom that identity applies. It is not enough to have studied medicine and read some relevant sections of a textbook. To understand what autism and ADHD look like in day-to-day life, professionals need to understand our culture.

This allows a person to see how ideas such as monotropism and the double empathy problem practically apply to neurodivergent lives. It allows them to have a practical understanding of how we mask and camouflage our neurodivergence. It presents the opportunity to engage with the power structures that oppress us and understand the numerous ways we are traumatised and how that might present.

It seems non-sensical that after years of waiting for a formal diagnosis, a person might be turned away on a technicality. When a lack of cultural competency stands between a person and a validation of their identity, something is fundamentally broken. People deserve access to and validation of who they are. Gatekeeping it behind services that are oversubscribed, underfunded, and that have no post-diagnostic support to offer is perhaps one of the most unethical things that a branch of medicine can do.

In truth, requiring a diagnosis fundamentally undermines the neurodiversity movement, but the current world is yet to move beyond such diagnostic models. Until such time that diagnostic professionals engage with the communities they exist to serve, there will be a significant power imbalance, and Autistic and ADHD people will be the ones paying with their lives and wellbeing.

David Gray-Hammond 0 Comments
May 17 2023
BBC Panorama is having their ethics called into question following the ADHD diagnoses expose

The other day, I wrote a response to this article about how such irresponsible reporting puts ADHD and otherwise neurodivergent people at risk. Since then there has been growing concern about the ethics behind the article and associated BBC Panorama documentary.

The first thing to note is this article written by the NHS consultant front Leeds who disproved the diagnosis of the three private diagnosticians in question. In the article, the doctor details how the situation being reported on is created by a history of underdiagnosis coupled with a lack of ring-fence NHS funding for ADHD services.

They comment on the fact that the Panorama documentary risks bolestering the arguments of people who falsely believe ADHD is overdiagnosed or that it isn’t a real diagnosis. I believe this is a very measured response to what is a massive failure by the BBC to ensure they meet good journalism standards.

However, there is more to this situation than improper reporting. A whistle-blower on Twitter believes that the reporter in question may have used a fake account to gain access to a female only space regarding ADHD in order to create the documentary and associated article.

The tweet is by Emily Mckenize on Twitter and details some concerning behaviour from the reporter behind this scandal:

Twitter thread by Emily Mckenzie

In particular I would like to highlight the end of the thread:

End of thread by Emily Mckenzie

This highlights a significant breach of boundaries and trust. This reporter appears to have posed as a woman to gain access to a female only space and then solicited information under false pretences. Is that not a flagrant disregard for journalistic ethics and integrity?

One thing is clear from this situation. The journalist, and perhaps the BBC themselves, had decided on the narrative they wanted to portray before actually investigating. They were willing to behave unethically and mislead vulnerable people in order to abuse a position of trust, just to sell this story.

They didn’t care what harm they were doing. They didn’t care that they were focusing on the wrong aspects of ADHD diagnoses. To make it worse, they have taken a space that felt safe for many vulnerable people and made them feel unsafe. This is not okay.

The BBC and the team at Panorama need to be held to account. The impact that this has had on a vulnerable community is unacceptable and highlights the ongoing ableism and uncontrolled privilege existing within the media. I would ask that everyone make a formal complaint to the BBC and request that they make reparations for the damage they have done.

Neurodivergent people deserve safety and support, not subterfuge and invalidation of their identity.

The BBC needs to do better.

David Gray-Hammond 0 Comments
May 16 2023
BBC’s ADHD private diagnosis scandal is the perfect example of irresponsible reporting

By now, you’re probably aware that the BBC is positioning itself as a whistle-blower in a scandal regarding the misdiagnosis of ADHD by private psychiatrists. While I am reticent to say that it doesn’t happen (of course it does, humans are awfully inexact creatures and psychiatry barely qualifies as a science), there are wider ramifications for this article that could go on to cause a great deal more harm than those at the centre of it can realise.

Service wait times for adult ADHD assessments are at an all-time high. Despite an NHS Constitution that states patients have right to access treatment within 18 weeks of a GP referral, some people are waiting in excess of 13 months. It isn’t surprising then that of the estimates over 1 million ADHD’ers in the UK, less than 10% are diagnosed (see link above).

All of this creates a tricky choice for those with the privilege of being able to access private assessment; continue to struggle unsupported, or pay to get your diagnosis privately.

Let’s step back for a moment and consider some issues that are pervasive across both NHS and private services. Psychiatry doesn’t just uphold the medical model of disability, they played a big role in creating it. The neurodiversity movement stands diametrically opposed to this pathologising of our existence. You won’t find neurodiversity affirmation all that common in any area of psychiatry, let alone cultural competence.

So, now we have an environment in which people are so desperate to get support that they will be willing to part with hundreds or even thousands of pounds fkr the privilege of being boxed into a pathological worldview in order to access said support.

Did I mention there isn’t really much support for ADHD beyond maybe getting ADHD medication?

Quite frankly, the diagnostic process is a nightmare. Very few professionals have a good grasp on neurodivergent experience and culture, and their diagnostic criteria are often restrictive and biased. The problem is not that diagnosis is too easy to obtain. If anything, it should be easier.

So when I see articles like the one the BBC has published, it turns my stomach to think of the effect it might have on an already broken system. Responsible reporters would not publish a piece like this in the manner that they have. What people will take away from it is that private ADHD diagnosis is a scam. It will justify the invalidation of many people’s diagnosis while simultaneously trapping those seeking diagnosis; should we choose between NHS waiting times and misdiagnosis or pay for a diagnosis that we might not receive and that no one will take seriously?

The deeper part of the problem is that people die because they don’t have the right diagnosis. If the BBC wanted to report on a diagnostic scandal, they could have chosen the complete lack of competency and up-to-date knowledge in those denying people diagnoses based on outdated stereotypes. Instead, they have risked erasing people.

With all of the pressures that exist for undiagnosed neurodivergent people, we should be helping them access support, not taking a blow torch to the already very thin ice they are standing on.

David Gray-Hammond 3 Comments
Mar 28 2023
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.

David Gray-Hammond 0 Comments
Feb 26 2023
Reclaiming Neurofuturism: An introduction

In some of my recent articles, I have referred to something called neurofuturism. While neurofuturism itself is not a new word (although weirdly, I didn’t know this when I first used it), I do believe that reconceptualising it may allow for a new discourse in the Neurodivergent community. Namely, a discourse around what the future of the neurodiversity movement and paradigm might look like.

With this in mind, let’s start by considering the original use of neurofuturism and take a look at it through a critical lens.

A lot of the discussion around neurofuturism thus far has looked at augmenting human cognition with technology up to, and including, artificial intelligence. This sounds exciting on the surface; fusing the human mind with technology as a way of unlocking our potential. It sounds exciting, but there are two main issues at the forefront of my mind

  • Technology is not universally accessible.
  • Technology can often be created with one purpose while incidentally fulfilling another.

Consider this, technology allowed us to split the atom. Fission reactors meant that we could create huge quantities of carbon neutral energy. It also meant that we were able to create nuclear weapons, fundamentally changing the nature of human conflict. As I mentioned, technology is not universally accessible. It often requires privilege to gain a seat at the table when it comes to research and design. Because of this, it is likely that people creating technology to go on your head either may not consider negative impacts on marginalised communities, or worse, may use it to actively oppress them.

Remember when Elon Musk claimed that neural interfaces could ‘solve’ autism and schizophrenia? We never asked for that, but it’s reasonable to worry that such a technology could be forced upon is if it were to exist.

So, why am I even talking about neurofuturism?

Neurofuturism has a place in human discourse, but it isn’t with the tech world. I firmly believe we should reclaim neurofuturism and reconceptualise it into something accessible and beneficial to all. What better place for such a concept to exist than within the neurodiversity paradigm?

Broadly speaking, neurofuturism as I conceptualise it has existed for some time. Neuroqueer theory could be considered somewhat of a flagship of neurofuturism. The idea that we can queer our identity and embodiment in line with our neurology is liberational, and that is what neurofuturism should be, a school of thought that emancipates us from the chains of the past.

In my mind, neurofuturism is a word to describe ideas that ask us to not blindly accept the knowledge of the past. It is a school of thought that asks us to take a degree of criticality to everything that has been taken for granted, including the ideas that the neurodiversity movement takes for granted.

Consider the ever-present threat of identity politics. We see it everywhere, and the neurodivergent community is not free of this threat. Much of the politics surrounding how people identify and what the embodiment of that identity should look like is based on some form of normative thinking. It’s necessary to consider the uncomfortable truth that even the neurodivergent community has its own normative ideas.

Wherever there is community, there is a status quo.

Thus, neurofuturism can be reclaimed as a way of advancing the community through criticality. This critical thought can be used to surgically cut through the chains of “normality”, shedding the excess so that we can walk unburdened into the future of our community.

This comes with a lot of uncomfortable thinking. It raises questions about objective truth and the social construction of everything from language to our own sense of Self.

Neurofuturism is not a ‘natural kind’. It does not exist without people observing its growth and trajectory. Moreover, it cannot exist without accepting certain truths, chiefly;

  • Human thought and experience should not be pathologised. It recognises that our psychological world is not a matter for medical intervention.
  • Where people experience psychological distress, we must look to their environment and the experiences it has afforded them.
  • That if human experience is not a medical matter, then such branches of medicine such as psychiatry must use social change as a means of support, with medicine being a tool rather than a requirement.

These points to me seem as the necessary first ideas to acknowledge in a neurofuturist approach to neurodiversity.

There is much more to be said on the nature of neurofuturism, and I hope that as this blog series progresses, we can explore what the future can look like together. I hope we can use the reclamation of this concept as a way of accommodating all Neurodivergent people, and not just the select few with the privilege of being platformed in the right places.

David Gray-Hammond 1 Comments
Feb 12 2023
Autism and ADHD: The myth of co-occurring conditions

It’s a very poorly kept secret that many people who are given a diagnosis of autism also meet the criteria for a diagnosis of ADHD. One could be forgiven for assuming this means that people who meet the criteria for both (often termed AuDHD) have two co-occurring conditions. Unfortunately, nothing in life is simple, and the actual answer to this situation is far more complex.

Co-occurring disorders refer to two separate conditions that are occurring at the same time. For example, one might be both asthmatic and diabetic simultaneously. I have chosen this particular example because I want to explore the disconnect between physical health and psychiatric diagnoses.

Diagnosis is a two part system. Step one is research. Clusters of symptoms are matched up to biological signs (known as biomarkers). Where a meaningful relationship can be found between symptoms and biomarkers, you have a disorder. In psychiatry, however, it does not go this smoothly. We can identify clusters of symptoms, usually behaviour or thoughts and feelings that have been deemed troublesome or pathological by those with the privilege of not being oppressed. The problem comes when we try to find a meaningful link with biomarkers.

Despite decades of research, we are not any closer to finding a quantifiable difference in the human body. The research that does exist has been largely inconclusive.

So here’s where autism and ADHD come in. Many of us meet the criteria for both diagnoses. This is because diagnostic manuals specify lists of traits, and if you meet enough of them, you get diagnosed. The problem is that much like pseudoscientific personality tests, humans don’t fit neatly into categories. The criteria for many diagnoses overlap and mic together.

The point I’m trying to make is that AuDHD’ers do not have two conditions simultaneously. In fact, according to the neurodivesity paradigm, there is nothing medically quantifiable. Humans have individual sets of traits that are diverse and interlinked. Remember the saying “if you’ve met one Autistic person, you’ve met one Autistic person”?

That’s because autism doesn’t actually exist. It’s not a physical abnormality, it has no presence. Autistic people exist, and being Autistic is an identity based on shared culture and language. So, what is far more likely is that Autistic and ADHD people are more likely to share particular clusters of traits. You don’t have two conditions, your particular flavour of diversity just happens to tick the right boxes for both.

One could argue that this means a separate diagnosis should be created for people who meet both criteria or that classification should be changed to have them listed as part of a shared spectrum. The problem is that current diagnostic models are unreliable and prone to mistakes. We often find our diagnosis changing from doctor to doctor.

This isn’t necessarily because doctors are bad at their job. It’s because we are trying to pathologise human experience and identity. You can’t measure psychiatric conditions with a blood test, doctors know this, and they’ve been trying to do it for many years. This means that not just diagnosis, but the criteria themselves are at the whim of individuals. Experts and professionals bring their own individual biases to the table, and each one will interpret traits differently.

This is why it’s important that we move towards a demedicalised approach to neurodiversity. We need to stop assigning people fixed identities through diagnosis and instead explore the very real fact that everything about us, including our neurology, changes with time.

People should be allowed to explore their identity and try on whatever labels they feel are right for them.

If this has intrigued you I highly recommend the Neuroqueer series that I co-author with Katie Munday and the interview I recently has with Dr. Nick Walker for my podcast.

David Gray-Hammond 3 Comments
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