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Reclaiming Neurofuturism: Autistic embodiment and the enactment of neurodivergence

When we seek to describe our Autistic and otherwise neurodivergent selves, we tend towards discrete categories and observable definitions of what we mean. However, to be Autistic is more than a diagnostic category; while Autism is a defining part of my experience, I also enact neurodivergence. My embodiment gives definition to what people mean when they use words like Autistic, ADHD, AuDHD, or Schizophrenic.

Performing Autism

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Like any of the diagnostic categories that have been assimilated into my identity, I perform them much in the way a neurotypical performs neurotypicality. Unlike the diagnostic criteria that bestowed these identities on myself, my performance is not containable. Every word that passes my lips, every action that my body makes; my existence gives meaning to the word neurodivergent. We often hear:

“When you’ve met one Autistic person, you’ve met one Autistic person.”

Unknown Author

I, however, would go one step further. Through our embodied relationship to the Self, we become autism. In the same way, I have become ADHD, and I have become Schizophrenia.

Queering the diagnosis

Autism does not exist as a separate entity, it exists as the embodied performance of ourselves. We choose the meaning that our identity has. We don’t have to be the Autistic that everyone else expects; through our performance of Self, We can redefine what people mean when they use words like Autism, Autistic, or neurodivergent.

We are both the writers and the actors in the performance of our neurodivergence. It is our job to deconstruct the politicised Autistic identity and replace it with the embodied and fluid definition that one might only find within the Chaotic Self. To word it another way; if we perform autism, that performance will change and evolve with each interaction with our environment.

Concluding Remarks

This lays a significant responsibility upon us as both individuals and a connected community. If we are redefining the meaning of autism and neurodivergence, it is on us to ensure that its definition is neither exclusionary or repulsive. The meaning of autism is written on our bodies, and we choose the words that write it into being.

We must strive toward a future free of the dichotomous standard of “meets diagnostic criteria” and “does not meet criteria”. Only when we break free of our politicisation and medicalisation can we truly explore the endless possibilities of doing autism.

Marginalised groups should not be responsible for ending stigma

When we think of stigma, we often think of awareness campaigns and personal disclosure of our struggles. On the face of it, these appear to be helpful in stigma reduction. However, as with all things like this, it is not nearly as simple as that. Autism has been the focus of many stigma reduction campaigns, but people are rarely Autistic as a standalone identity, and there are (more often than not) multiple marginalities within Autistic lives.

Autism is not the only sources of stigma in neurodivergent lives

When considering my own experience, one identity of mine that is particularly relevant to this conversation is Schizophrenia. Psychotic disorders have been positioned as the most “dangerous” of mental health concerns. People assume a poor prognosis with a high potential for violence.

Schizophrenia, in my opinion, is a good measure of saneism and ableism in society. Despite Schizophrenic people only having a modestly increased risk of violence, the media fails to report responsibly. Nuances such as the socioeconomic factors of violence in this population are rarely accounted for. In the same way, much of the stigma surrounding neurodivergence and other marginalised identities is driven by poor understanding of colonial oppression and sloppy reporting by journalists. When considering the sources of stigma in a person’s life, we have to consider intersectionality and minority stress.

Individualism and the stigma surrounding neurodivergence

When considering the role of individualism in the perpetuation of stigma surrounding neurodivergence, we have to first understand the role of psychiatry. The field of psychiatric medicine centres most neurodivergence ad “mental illness”. It places the issue within the body of an individual and requires them to “recover”. This individualisation is responsible not just for the coercion that occurs within the psychiatric profession. It is also responsible for the use of quack cures such as MMS and chelation “therapy” that do a great deal of harm.

The ableism and sanism that surround neurodivergence means that we are often coerced into harmful “treatment” or abused by those closest to us. We are dehumanised by stigma and forced to endure a world that views our existence as an abberation rather than a natural part of human diversity.

Why is it wrong to expect victims of stigma to tackle their own stigma?

When we consider marginalised groups, we have to consider that, for most of us, dismantling stigma is usually an expectation of free labour. Far too often, we are expected to expose the most vulnerable parts of ourselves to a world that, in most cases, will respond with vitriol. Raising awareness through vulnerability can be life threatening for many of us.

We also have to note the effect of privilege in stigma reduction efforts. White people such as myself are better able to expose the less acce0ted parts of themselves. If a BIPOC Autistic or Schizophrenic (considering my own neurodivergence) person were to lay bare their most hidden parts, their life could be endangered. For me, the stigma I face is dangerous, but not nearly as life-threatening as that of my further marginalised neurokin.

Conclusion

Marginalised people are left to raise awareness in a world that does not want to listen. It should not be us doing the work to dismantle stigma. Instead, those perpetuating it should be practising enough introspection to realise the conditioning that our neoliberalism world has used to dehumanised people such as myself. The expectation that we will do the work is fundamentally flawed in a world that does not care enough to practice insight.

Until such a time that wider society is ready and willing to see its own role in our oppression and marginalisation, we will continue to be mistreated. It should not be our job to tackle structural oppression while also trying to survive it. That is what most of us are pouring our energy into; survival.

How common is psychosis for Autistic people?

It’s no secret that the list of co-occurring traits and conditions that fall within the world of autism is exceptionally long. Autistic people tend to be multiply neurodivergent as well as having various health concerns. Despite this, there are certain aspects of Autistic experience that are not well discussed within our community. One of these things is psychosis.

Psychosis is more common in Autistic populations than people realise. Research suggests that almost 35% of Autistic people show traits of psychosis with up to 60% of Schizophrenia patients demonstrating clinically significant traits of autism. When we consider these statistics, it becomes clear that this is an issue that needs to be discussed more openly in our community. Unfortunately, due to the intense stigma surrounding psychosis, it often feels unsafe for people to have this conversation in public places.

Part of this issue is highlighted by the lack of mental health literacy regarding psychosis. One study found that 86% of participants could accurately identify traits of depression, as opposed to only 41.5% of participants accurately identifying traits of psychosis. To me, this is a result of media portrayals of psychosis. The term psychotic is often used as a synonym for dangerous and unstable. Schizophrenia is often mistakenly conflated with Dissociative Identity Disorder, and both demographics find themselves falling foul of movie directors who want to portray a dangerous person.

Within the Autistic community, there can be issues with getting people to speak up about lived experiences of psychosis. Fear of stigma and misunderstandings about this admittedly extreme manifestation of psychological distress can keep people silent, while others want to keep autism separate from perceived “mental illness”. This is problematic because it represents a significant risk of early mortality.

Autistic people are 9 times more likely to die by suicide with one of the primary causes of premature death in people who experience psychosis also being suicide. One might wonder of these findings are intrinsically related. The combined minority stress of being both Autistic and experiencing psychosis could represent a significant factor in the premature deaths of both demographics. Unfortunately, the research on this particular interplay is almost entirely non-existent. We need the discussion around autism and psychosis to open up in order to highlight contributing factors to these troubling statistics.

It isn’t surprising that psychosis is so prevalent in Autistic communities. Psychosis and trauma have an obvious correlation with population based studies showing a strong relationship between childhood trauma and abuse, and the emergence of psychosis. When we consider the effects of minority stress, whereby Autistic people suffer from the cumulative effects of systemic discrimination and oppression, we begin to see a world where in being Autistic almost becomes synonymous with being traumatised in some way.

Something else that is important to consider is the overlap between autism and ADHD. Research suggests that as many as 70% of Autistic people also present clinically significant traits of ADHD. one study found that 32% of adults with a history of psychosis reported ADHD traits starting in childhood with up to 47 % of those with childhood-onset Schizophrenia also presenting as ADHD. We also need to consider that both Autistic people and ADHD people have a significant likelihood of using substances. Substance use and psychosis have a significant enough relationship that there are specific NICE guidelines around this issues.

It is clear that psychosis is a significant issue in regard of the psychological wellbeing of Autistic people. In order to address these issues and create a world where Autistic people can thrive, we need to start talking about this. We also need to address lack of professional cultural competency in Autistic experience and presentation that may result in the connection between autism and psychosis not being identified in clinical and research settings.

Autistic people need good quality identification of psychosis and suitable support for their psychotic traits. Failure to do so is literally placing our lives on the line and failing a growing demographic within our population.

Autism and pain: When pain management options are limited

I have recently been writing about the Autistic experience of pain and the risk that it presents to Autistic people when medical professionals do not understand the way we display pain. Some of us, however, live with chronic pain and are prescribed painkillers. For a lot of people in that position, narcotic pain relief serves as the only option. What people often don’t realise is that being able to use narcotic pain relief is a privilege, and not all of us have that privilege.

I am not only Autistic, ADHD, and Schizophrenic. As of this year (2023), I am seven years sober from drug addiction. The drugs I was using that are most relevant to this conversation were opioids, benzodiazepines, pregabalin, cannabis, and spice. I was using all of these drugs very dangerously and, as a result, have chosen a life of complete abstinence. If I hadn’t, doctors would not prescribe anything similar to them anyway.

This has left me with very few options for the pain I experience related to my hypermobility. Realistically, I can only take paracetamol and naproxen. Neither of these offer much relief from bad pain days, but they do reduce the pain just enough that I can mask it.

Addiction isn’t the only exclusionary factor that can stop people from accessing the privilege of strong pain relief though. Allergies, or an intolerance to side effects, make the use of strong pain relief impossible. Even in countries where medical cannabis is legal, cannabis is not suitable for everyone. For me personally, cannabis use always ends with me using harder drugs. For some, it affects their mental health or makes them experience unpleasant thoughts and feelings.

This has landed many Autistic people in a sticky situation. We have nowhere to turn for pain relief. Pain we may not express in a “typical” way or be able to articulate. It means living in a state of constant dysregulation. Despite this dire need for strong pain relief that does not have mind altering effects, pharmaceutical companies are yet to create anything.

Autistic people are significantly more likely to experience chronic pain, with Autstic children being twice as likely to experience it as their non-Autistic peers. We then have to consider the risk of addiction in Autistic people due to self-medicating. To top that off, just over a third of addicts in this study were abstinent upon successful discharge from treatment. To me, these statistics say that there are a significant number of Autistic people unable to manage their pain effectively without the risk of relapse into addiction. Let’s also not forget the risk of habituation among people new to opioid pain relief.

The cherry on top of all of this is that recovering addicts who ask for pain relief are often accused of drug-seeking and ignored. This can only be compounded by professionals who do not understand Autistic presentations of pain. There is a great deal of stigma around addiction in professional circles. With chronic pain being a risk factor in already elevated suicide rates amongst Autistic people, this is an issue that can not be ignored.

When researchers are spending millions on looking for why we exist, rather than trying to improve quality of life with regards to things like this, is it any wonder that there is a gulf between us and them?

Autism and drug-use: drowning in the void

It’s no secret that I’m a recovering drug addict. It’s certainly even less of a secret that I am also Autistic/multiply neurodivergent. When one considers the reality of meeting diagnostic criteria for autism, ADHD, and schizophrenia; It’s easy to see how drug use was an inevitability. I often joke that AuDHD isn’t descriptive enough for me, and that I should describe myself as AuDphrenic.

It’s important to note that I don’t like to differentiate between “drugs” and “alcohol” given that alcohol itself is a drug. The separation of the two has been instrumental in the dehumanisation of those struggling with their use of things outside of the world of alcohol.

Autistic people can and do use drugs. Many professionals believe that we don’t, but we do. We often have access, means, and reason to use drugs. Allow me to present some statistics on drug use, found in this study:

  • Despite over all being less likely to report recreational drug use, there were some significant findings:
    • We are nine times more likely to report using recreational drugs to manage our behaviour.
    • We are more likely to report using recreational drugs to manage our mental health.
    • We are more likely to report vulnerabilities associated with drug use such as;
      • Childhood drug-use
      • Being tricked or forced into drug-use

This highlights some significant points of consideration for Autistic people. Those of us on the AuDHD intersection may be experiencing atypical burnout. This presents a high likelihood of Tanya Adkin’s concept of meerkatting coming into play. For an Autistic person in meerkat mode, drug use may offer a great deal of reprieve and give the feeling of an extended number of spoons/cognitive resources (see spoon theory).

When I was using drugs, I treated myself as a science experiment. For an AuDHD Schizophrenic, drugs allowed me to find a flow-state. They made the management of my Self and identity more manageable. I would keep journals of my drug use in order to see how far I could push it. Just how high could I get?

Some Autistic people use drugs safely. Cannabis and psychedelics are very popular options for self-medication, and I know of many who use them as such. It’s important that we recognise the risks without invalidating those who use them safely as medicine. In a world where a trip to the doctors can bankrupt you, we should not judge those who self-medicate. We should create a space where it is okay to explore all the pros and cons.

It’s also important to note the aforementioned risk of forced drug use. Many of us wish desperately to be part of friendship groups, which places us in a vulnerable position. Mate crime and criminal exploitation can often start with forced drug use. We need to protect Autistic people against the inevitable black market that has arisen from prohibition.

Addiction is a real risk, I know because I am an addict. For many of us, things can spiral out of control. Societies framing of addicts as something inhuman has created a world where it is unsafe to discuss this fact of life. We need to build communities where people can access meaningful peer-based support and advice for drug-use that has spiralled out of control.

In a world where up to 66% of Autistic people have considered suicide, and 35% have attempted suicide (see this study), we need to take a really good look at how we support Autistic people with things such as drug-use.

What is meerkat mode and how does it relate to AuDHD?

This article was authored by Tanya Adkin

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 [AuDHD] 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.”

Adkin & Gray-Hammond (2023)

Recently David and myself have written a few articles on atypical burnout (Adkin & Gray-Hammond, 2023) and the burnout to psychosis cycle (Adkin & Gray-Hammond, 2023). In those articles I’ve mentioned something that I refer to as “meerkat mode”. People seem to relate to the concept as discussed in the articles, so I thought it may be wise to dedicate a whole article to what I mean by this concept.

Firstly, I want to explain that I am a very visual thinker, who happens to be plagued with good ol’ imposter syndrome. Said imposter syndrome tells me I should have thought of a more academic terminology, but that’s not the way my brain works. Truthfully, I can’t think of a much better visual representation for what i’m about to describe.

Meerkat modes presents an answer to the diverse forms of burnout I have witnessed through my work with a wide range of neurodivergent people. David agrees with the assessment as a fellow “autism professional”. I don’t set out to reinvent the wheel or change entire paradigms, this is and was a way for me to simply explain a phenomenon that is more common than people realise. A phenomenon that I see described on an almost daily basis as hypervigilance or a trauma response, but in my experience is more than that.

What is meerkat mode?

  • Hypervigilance
    • Hypervigilance is not a diagnosis. Rather, it is the brains biological adaptation to ongoing stress and trauma, which we know that Autistic people experience at a higher rate than non-Autistic people (Gray-Hammond & Adkin, 2023). It is the way it maintains a state of high alert on the look out for threat. It’s a description of a state of being that is commonly seen in diagnostic criteria for things such as PTSD, anxiety disorders, schizophrenia spectrum disorders, psychosis and psychotic phenomena, some personality disorders, and much more.
    • Interestingly, a lot of these mentioned diagnoses are seen to be co-occurring with Autistic experience.
  • Seeking a monotropic flow-state (Hyperfocus)
    • Flow-state in terms of monotropism refers to the tendency for monotropic brains to fall into deep attention tunnels that are intrinsically motivating. It has been reported by Autistic people that entering this flow-state is beneficial to monotropic peoples mental wellbeing.
    • Flow-state and hyperfocus are often used interchangeably and there is a general acceptance of it’s occurrence but no solid definition.
    • Anecdotally, when we see this as a person seeking to be in a constant flow-state, it can often indicate dysregulation or adaptations needed within the environment. Sometimes (when dysregulated) this flow state can be quite negative and turn into a monotropic spiral.
    • Because of hypervigilance people experiencing “meerkat mode” have a significantly more difficult time accessing flow-state.
    • Hyperfocus/flow-state is reported in autism, ADHD, and schizophrenia (Ashinoff & Abu-Akel, 2021).

“Refers to a state of being engrossed in a task that is intrinsically motivating during which task performance improves, there is a tendency to shut out external environmental stimuli, and internal signals”

Ashinoff & Abu-Akel (2021)
  • Increased Sensory Dysregulation
    • Interoception
      • Interoceptive differences do not only occur in Autistic people. They are thought to be largely caused by early-life stress (Löffler et al, 2018) and trauma (Schulz, Schultchen & Vögele, 2021).
      • Interestingly, interoceptive differences are seen to occur in ADHD people, Schizophrenic people, eating disorders, anxiety disorders, emotionally unstable personality disorder (EUPD), and more.
      • I am not stating that Autistic interoceptive differences are created by trauma, rather that the generic understanding of interoceptive differences is attributed to stress and trauma.
    • Alexithymia
      • Alexithymia refers to the difficulty or inability to sense or decipher one’s own emotions or the emotions of others. It could be described as a subcategory of interoceptive differences.
      • The general view is that alexithymia is created or arises from extreme stress or trauma, some research does suggest it could have biological or developmental links (Thompson, 2009).
      • Again, alexithymia occurs in more or less every diagnostic category I have pointed out previously, including ADHD, or any situations that create stress or trauma.
    • Link between interocetion (alexithymia), vestibular, and proprioception
      • Those that are displaying “meerkat mode” (in my experience) will generally seek proprioceptive and vestibular input, e.g. bouncing on a trampoline, rough play, being upside down. They may be “clumsy” or meet criteria for developmental coordination disorder (dyspraxia).
      • Interestingly, the above sensory profile is highlighted in guidance to be of clinical significance with a PDA profile of autism (PDA Society).
      • Generic advice for someone experiencing “meerkat mode” would be to increase proprioceptive and vestibular input in order to regulate interoception.
      • Interoception takes the leading role in emotional regulation.

“Interoception works the vestibular and proprioceptive senses to determine how an individual perceives their own body. Well-modulated interoception helps the individual detect proprioceptive and vestibular sensation normally.”

sensoryhealth.org
  • May be unable to stop or rest
    • As David and I have discussed previously in our articles on atypical burnout and the burnout to psychosis cycle those that appear to be meerkatting may not be in a position to stop and recover.
    • This could be due to co-occuring ADHD (AuDHD) or life demands such as parenting or work, maybe interoceptive differences mean that the person does not “feel exhausted”. They could be in a monotropic spiral of flow-state which is shutting out everything else.

Concluding thoughts

There are infinite possible interactions between an AuDHD person and their environment. And this is why I think we often struggle to define our experiences through something that can be outwardly observed and measured.

This is just one explanation for something that I have witnessed in a sea of possibilities.

References

Adkin, T. & Gray-Hammond, D. (2023) Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look. emergentdivergence.com

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

Ashinoff, B. K., & Abu-Akel, A. (2021). Hyperfocus: The forgotten frontier of attention. Psychological Research, 85(1), 1-19.

Gray-Hammond, D. & Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. emergentdivergence.com

Löffler, A., Foell, J., & Bekrater-Bodmann, R. (2018). Interoception and its interaction with self, other, and emotion processing: implications for the understanding of psychosocial deficits in borderline personality disorder. Current Psychiatry Reports, 20, 1-9.

Schulz, A., Schultchen, D., & Vögele, C. (2021). Interoception, stress, and physical symptoms in stress-associated diseases. European Journal of Health Psychology.

Thompson, J. (2009). Emotionally dumb: An overview of alexithymia.

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 Psychiatry13, 768586.

What is unique about being Schizophrenic and Autistic?

I have previously written about the significant intersection between autism and schizophrenia and the relationship with psychosis in a broad sense. It is a widely undiscussed area despite the fact that many people experience it. I have also discussed what it is like to be schizophrenic; recently people have been asking me how my psychosis presents.

For this reason, I thought it would be good to discuss some of what I have found unique about my relationship with Schizophrenic experiences and my overall relationship with this particular aspect of my neurodivergence.

Hallucinations

I experience auditory, visual, olfactory, and tactile hallucinations. What does this mean?

  • Auditory Hallucinations
    • These are sounds and voices that others do not hear. I can hear voices speaking to me and discussing my actions. A typical experience might be hearing voices coming from televisions and radios, but I also hear voices that sound like someone speaking next to me.
  • Visual Hallucinations
    • These include perceptions of visual things that other can not see. Some that can occur for me are moving or breathing walls, people (such as a woman in a black dress), and insects.
  • Olfactory Hallucinations
    • This means that I smell things that are not in existence in the environment. I can often smell tobacco being smoked where no one is smoking, or flowers that are not present.
  • Tactile Hallucinations
    • This typically manifests as the feeling of things crawling over my skin.

Delusions

My most common type of delusion is persecutory delusions, although I have experienced grandiose delusions as well.

  • Persecutory Delusions
    • These are delusions where we believe that someone or something intends to do us harm. I have believed that I am trapped in a computer simulation by someone trying to delete me, that microchips have been implanted in me that are broadcasting my thoughts, that my food is being poisoned, and that my loved ones have been replaced by doppelgangers.
  • Grandiose Delusions
    • This is typically a belief that there is something uniquely special and important about you. For me, this manifested as a persistent and Obsessive belief that I had unified quantum mechanics with the physics of gravity and relativity.

Mood

I experience depression and hypomania. Depressive episodes are crippling and may see me sleeping for days on end. Hypomania episodes make me feel hyperactive and take risks. One particular example of my hypomania resulted in me having to be locked in the house to stop me from leaving the country.

What makes my experience unique?

Psychosis is incredibly difficult to camouflage, but due to being Autistic I was already adept at projecting an acceptable version of myself (I highly recommend this article by Tanya Adkin on masking). Professionals largely do seem believe it is possible to mask psychosis, but I managed it.

I also have a great deal of insight that is typically not seen in schizophrenia. Most of the time, I am aware that I am hallucinating or having paranoid or delusional thoughts. It is only in full-blown episodes that I lose that insight and become consumed by the neurogenerated reality I am experiencing.

This presented an issue in receiving correct diagnosis. Many professionals refused to accept that I was experiencing psychosis and would often gaslight me into questioning my own experiences.

“Although schizophrenia can occur at any age, the average age of onset tends to be in the late teens to the early 20s for men, and the late 20s to early 30s for women. It is uncommon for schizophrenia to be diagnosed in a person younger than 12 or older than 40”

National Alliance on Mental Illness (NAMI)

Despite my recognised onset of psychosis being at the age of 18, it took me until the age of 32 to be formally diagnosed. The full name of the diagnosis is too long to remember, but it is effectively the schizophrenia equivalent of PDD-NOS. One psychiatrist commented that he wished a diagnosis of “atypical Schizophrenia” existed for people such as myself.

I would also note that I was experiencing depressive traits and hallucinatory phenomena from a much younger age, but it was largely ignored and overlooked by professionals. I often wonder if this was the build-up to what emerged in my late teens.

We need professionals to recognise these unique experiences. Had my psychosis been addressed earlier, I may not have turned to drugs and alcohol for relief. Much of my suffering could have been avoided.

I am happy with my life now, but still have some anger for the experiences I have had at the hands of professionals. We need people to speak out, and inspire a paradigm shift in the recognition and support of Autistic and psychotic people.

For more writing on my experiences of psychosis and madness, please consider purchasing a subscription to my substack.

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

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.

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