Search for:
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.

What is it like to be Schizophrenic?

I have written a fair amount about how I don’t view my being Schizophrenic as an illness. This in itself seems like a bold claim given the way that society has pathologised anyone who (by means of their bodyminds neurology) can not perform neuronormativity. Neurotypicality has been set as a standard for how one should embody themselves with everything outside of it being viewed as illness.

What I feel is necessary is to position my Schizophrenic bodymind within the experiences that it creates. It is also important at this point to note how one’s environment plays a role in the generation and sustenance of those experiences. I can not actually point to a single “Schizophrenic experience” (if such a thing exists in such explicit terms) that was not triggered by the affordances of my environment.

Schizophrenia is strange. Much like autism, it is not a separate entity to myself awaiting removal, but it is also somewhat like a travelling companion that might not always give you the best advice. At times, you are certain it is trying to kill you.

I live my life with a certain level of paranoia. My mind is one that will assume people intend to harm me. I am often somewhat concerned with non-existent conspiracies that centre around others’ meaning to harm me. For the most part, I can look past it. 99% of the time, these are fleeting thoughts. Occasionally, they will take hold, creating anxiety and fear that I often mask. It is rarely perceptible to others, or even of note in it’s affect on my outward behaviour.

I have largely learned to co-exist with myself.

Perhaps more distressing are hallucinations. When the episodic nature of my schizophrenia is ramping up, I can hear multiple voices. Often, these voices will stoke the fires of paranoia. They not only talk directly to me but also to each other. At my worst, I live with a constant and derogatory commentary who will not interact with me.

When I hear these voices, they sound as real as talking to a friend in person. Usually, they are disembodied. Sometimes, they emanate from electronic devices.

I have visual hallucinations that look as real as you or I, I see things that defy description in any language I have access to. Reality during an episode can become somewhat of an abstraction.

Perhaps most frustrating is that at the very height of an episode, I can loose control of my speech. My mind will race so fast and jump from topic to topic in a way that I can not verbally communicate. It is perhaps the scarier of the traits; it feels like I am communicating fine, but all people hear is gibberish.

The final aspect I would like to consider is delusions. This is the culmination of all the experiences that alter my beliefs about the world around me. The world I believe in feel 100% real. No amount of evidence or discussion can shift these beliefs. If anything, I cling to them more so.

Despite these terrifying experiences, I co-exist with this aspect of my bodymind. I have come to learn a great deal about who I am and what my desires are through the ways that my mind alters reality. I have come to understand that psychosis is protective. When reality is too much, my mind creates a more acceptable reality. Or at least, one that I can understand more easily.

I am at peace with who I am. I have come to realise that the people who fear me for being Schizophrenic are victims of a system that has positioned people like me as dangerous, despite evidence to the contrary.

I want others who are Schizophrenic or experience psychosis to know that I see them. I know the isolation that our minds can create. I know how it feels to have to question your thoughts constantly, to wonder what is real, and what your mind has generated.

I want you to know that even at your most lonely, there are others our there who get it, we know, we care. The world is brighter for having diversity in it, and we are a part of that diversity.

Why Mental Health Awareness Month is failing Autistic people

May is Mental Health Awareness Month. The bitter irony that this comes immediately after the dreaded Autism Awareness Month/Autism Acceptance Month is not lost on me. After a month of fighting hard to be heard over the corporations who monetise our existence, May can feel quite offensive in its positioning of mental health.

We need people to learn about mental health. I will never say we don’t need that. Psychological distress is a heavily misunderstood and stigmatised state of being that threatens not just a person’s wellbeing but also their life. The problem is that when you are Autistic, discussion of mental health can be infuriating.

For as long as we’ve existed, psychological distress has been ignored in us. I often think of my own 14 year journey to get a schizophrenia diagnosis from psychiatrists who would tell me I was “just anxious” and that anxiety was “normal” in autism. Normal. Professionals have come to see our suffering as acceptable, and therein is where the problem lies.

There is no acceptable level of distress. However, the institutions that are responsible for our wellbeing have created the concept of normalised suffering because it shifts the focus off of the structures and power imbalances that traumatise us at every turn. Rather than change the parts of society that do harm, they label the fallout as “normal”.

Autistic people are so often left out in the cold with regard to their mental health. Services like CAMHS and adult mental health services will actively turn away Autistic people. Even those who do manage to access support are often met with cultural incompetency and therapies not designed for them. It feels as though we have to do things for ourselves at a time when we most likely feel incapable.

So, yes, May is Mental Health Awareness Month, but it’s not enough to learn about depression and anxiety. We need to create a culture where those who are most vulnerable have access to good quality support, and are not made to feel like outsiders for not blending with the crowd.

Autistic people deserve a happy life.

Sign up for David’s Divergent Discussions for 12 months of 50% off access to my bonus articles.

Don’t forget to check out the CAMHS Crisis resource page and join the Discord for community discussion.

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

I don’t talk about my childhood much. Partly because I don’t want to upset my readers, but also because it is not my story alone to tell. The people who did so much harm to me as a child also caused harm to others that I love immensely. A sad part of my life is that as a result of the harm done to me, I made choices in my life that hurt those people I loved. I don’t blame myself, but I also haven’t quite reach the point where I can release myself from the sense that I need to make reparations.

Something that I think is really important to talk about however, is the way I was failed by professionals who very well could have turned my life around. I am happy with my life now, but I do wonder what it might have looked like had I not been left to drown by a service that was meant to be my saviour. That service was the UK’s Child and Adolescent Mental Health Service (CAMHS).

The worst part isn’t even that they ignored my mother’s pleas to assess me for autism. It’s not the time that they tried to put me on Ritalin after a five minute conversation. It’s the way they were nearly complicit in my surrender to the suffering that I experienced. I’m a suicide survivor, and CAMHS didn’t care.

I came to them, beaten and bruised, I laid before them my trauma, my pain, my isolation, my disdain for every aspect of myself. I told them that I couldn’t cope, that I was scared to wake up each day. I told them things about my past that I can’t bring myself to say publicly, even to this day. I was met with silence. Cold, uncaring silence. They did nothing. They labelled me a school refuser. They still refused to assess me for autism.

Is it any wonder then that I found solace in the steel trap of drugs and alcohol? What can one do in the face of unending suffering than desperately scramble to drown out the noise. The noise was inescapable. The voices in my head would scream at me daily. I was paranoid and distrustful of everyone, even those that I loved dearly. CAMHS allowed my psychological wellbeing to deteriorate to the point that I could no longer cope with existing. I resigned myself to an early grave.

Some might ask why this is relevant, I am a man in his thirties, surely this was a long time ago?

No.

This is still happening. Everyday, thousands upon thousands of families are forced to watch on as CAMHS allow their children to suffer. If you want to know why so many Autistic people die by suicide, start by taking a look at this (dis)service. CAMHS are complicit in an untold number of deaths. Each data point in those statistics represents a story untold. A future unrealised. With each child lost by the negligence of those meant to help them, our future becomes a little bit darker.

I am happy today, but it hurts. It hurts to know that my child and millions like them do not have this service in a good working order should they need it. I want a world that protects my child and seeks to heal wounds and change worlds. It’s the least they can do for our precious children.

My name is David, and I’m a CAMHS survivor.

Please help us change children’s lives by signing this petition.

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.

Power dynamics and mental health: Neurofuturist discourse of mental health

When we consider power dynamics, we often consider our external environment and how power flows through the various parts of society, and where privilege is afforded by that power. While discussion of intersectionality and power dynamics is important when considering where discourse comes from and how it affects groups of people, we often don’t think about how such discourse injures our relationship with the Self.

Mental health has long been the remit of medicine. Distressing or unusual behaviour has been positioned as a pathology requiring treatment for decades, despite this approach not improving outcomes for those it affects in that entire time. We use a lot of troubling language when talking about psychological distress; disorder, condition, ailment, mental illness, psychopathology. Each of these words conjure up images of a medical emergency. They tell us that a problem is situated with us and that we need to be fixed.

We then also have to consider the militaristic language that surrounds medicine. “Chronic illness warrior” and “lost their battle to cancer” immediately spring to mind. The effect that these co-occurring discourse (see what I did there?) have on our sense of Self is to enter us into a fight with our own experiences. Experience helps shape the Self meaning that the popular discourse around mental health is placing us into a war with our Self. It is no longer okay to be us.

The irony here is that constant fighting with our own sense of identity causes further psychological distress. Perhaps the reason that outcomes in psychiatry have not improved for over half a century is because their methods and discourse are actually escalating our distress.

Instead of asking “what’s wrong with me?” We need to shift discourse over to “what happened to me?”. It’s vital that psychological distress be placed in the context of one’s environment and experiences of the complex power dynamics within them. There is a word for systems that require us to fight ourselves into a more socially acceptable place; oppressive.

Current systems within mental health treatment are weapons of the oppressive cult of normal.

As we look to the future, we need to consider how we will emancipate ourselves from normativity of all kinds and what we will accept as freedom. Society has spent a long time pathologising those identities and experiences that do not serve its own goals, and the time has come to stand tall and proclaim aloud; who I am has value, I will not be placed at odds with myself.

Verified by MonsterInsights