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Autism and Paranoia: Autistic pattern recognition when it runs away

Autism is not something that is generally associated with paranoia, but as you will see from previous writing on the topic, it is an issue that needs to be given consideration. Research as far back as 2011 (King & Lord, 2011) has indicated that there is a growing belief that autism and schizophrenia may be part of a single spectrum. As an Autistic and Schizophrenic person, I am inclined to believe they might be, the relationship between the two feels complex and nuanced, so it should come as no surprise that paranoia is a topic that needs attention.

Is there a difference between Autistic paranoia and Schizophrenia paranoia?

Research has indicated that paranoia in Autistic people occurs at a similar rate to Schizophrenic people, but Autistic people experience it more on the basis of social cynicism (Pinkham et al, 2012). Social cynicism is a broad category, but to my mind it has to do with our pattern recognition skills. Autistic people grow up in a world that is inherently traumatic, and learn to predict outcomes in order to defend the small amount of wellbeing afforded to them.

This elevated sensitivity in pattern spotting can at times get out of hand. When we are in meerkat mode or atypical burnout, we may start seeing data points that would usually be considered anomalous background noise as something meaningful and connected to real world occurrences. This associative thinking can create feelings of paranoia and persecution, which in turn adds to our dysregulation, making it more likely that we will form these abstract connections. When we combine this with a cynical attitude towards our society, it is easy to see where the problem begins.

How does this differ to people who are Autistic and Schizophrenic?

In my own experience, my paranoia is considerably more bizarre than the average burnt out Autistic person. I experience delusions that are often abjectly impossible as opposed to many Autistic people who experience paranoia that has a more tangible and realistic pattern to it. Mazza et al (2022) found that Schizophrenic people struggled to understand social scenarios, as opposed to Autistic people who were more likely to misunderstand people’s intentions in social situations. We can consider that the additive effect of this is an increased susceptibility to gaslighting, which as a traumatic occurrence in itself may well feed into our paranoia. When you are Autistic and Schizophrenic, the people around you have a great deal of influence on your wellbeing. Paranoia can be intimately connected to the views of the people in your life.

Autism, paranoia, and co-regulation

Autistic people experiencing paranoia often (anecdotally) report decreased interoceptive sensitivity and struggle to regulate their own emotions. This is where co-regulation with a safe person is absolutely vital to recovery. When we are unable to create feelings of safety on our own, it becomes necessary for another person to share their calm and rationality with us. This can be particularly problematic for households where dysregulation is the norm, heightened emotions of those around us can elevate feelings of paranoia and create self-fulfilling prophecies.

Social factors in Autistic paranoia

Minority stress plays a significant role in the psychological wellbeing of Autistic people (Botha & Frost, 2020). When considering minority stress, we have to consider the cumulative stressors that come together to create minority stress. Howlin (2013) discusses how Autistic people have less positive educational outcomes, as well as being poorly served by health and social care settings. We also have to consider the class divide, intersection with race, gender, and sexuality, and social isolation. We are a population who face very negative socioeconomic outcomes. This can create strong feelings of distrust in the system and a sense of persecution by a society that dictates our assimilation regardless of whether it is the right thing for us.

This is just a brief look into the world of autism and paranoia, but I believe it highlights some key issues that deserve further research and support. In the meantime, the best thing we can do for our Autistic loved ones is to create a safe and accepting space, free from the demands and alarming patterns of our abusive society. For the issue to be solved, society needs to be changed at it’s foundations.

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.

What is alexithymia?

Recently i wrote about alexithymia and it’s ramifications for our mental health. Since publishing that post, it has come to my attention that many people feel this is an underdiscussed area and weren’t sure exactly what it means.

So, what is it?

Simply put, it means that you can’t match up the internal signals of your emotions with words to describe your emotions. For example, I can’t tell the difference between anxiety and excitement. This means that when I’m experiencing either of these emotions, I don’t know what I am feeling.

This is because alexithymia relies on one of our senses called interoception. This sense allows us to feel the internal state of our body. Interoception covers more than emotions as it also tells us things like how fast our hearts are beating, whether we’re the right temperature, or if we’re thirsty or need the toilet.

Because Autistic people experience interoception differently, it affects our ability to identify and describe our emotions.

Alexithymia appears to have links to atypical burnout, meerkat mode (as conceptualised by Tanya Adkin), and psychosis. Alexithymic people might not recognise their burnout, and therefore will not take time to recuperate. Alexithymia has been seen in around 50% of Autistic people studied, although studies tend to only look at those with a formal diagnosis.

Alexithymia is perhaps one of the least understood aspects of Autistic experience among autism professionals; therefore representing an area requiring a great deal of attention for those working with Autistic service users. In particular, mental health professionals.

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

Creating Autistic Suffering: What is Atypical Burnout?

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

The literature around Autistic burnout is in it’s infancy with regards to academic papers, most of what exists comes from lived experience and blogs written by Autistic people themselves. The first academic paper on Autistic burnout was written by Raymaker et al (2020).

This paper describes Autistic burnout as:

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.”

Raymaker et al, 2020

The following image from the paper shows how life stressors and barriers to support culminate in the outcome of burnout for Autistic people.

Typically the Autistic person in question will still have multiple demands in their life that require cognitive resources, despite having little to no resources left to give. Life goes on, as they say.

Burnout is widely understood and reported to be misdiagnosed in Autistic people as depression (Raymaker et al, 2020). This isn’t without basis; burnout can look like stereotypical features of depression such as not being able to attend to day-to-day life and losing one’s enthusiasm for things that used to be enjoyable. People experiencing burnout can struggle to get out of bed, although this is not necessarily a defining feature.

We are moving towards a measurement of Autistic burnout, although it is still in it’s very early stages. Papers such as Arnold et al (2023) suggest looking at things like issues with memory, emotional numbness, and difficulty communicating; all of which are usually taken as features of depression. It’s easy to see where the difficulty in differentiating arises.

The key difference in our opinion is that while burnout can lead to depression, it does not start there, and is rarely responsive to typical treatments for depression. Autistic burnout starts with monotropic split (Adkin, 2022) over a sustained period of time. Burnout recovery can take months or even years, and the recommended course of action is usually to remove as many demands as possible, and recharge through interest-led activities.

As Autistic people, we naturally live as demand free as possible. We do this because whether we are aware of it or not, we have to account for the distribution of our cognitive resources.

So, what happens if we can’t stop?

There are many reasons that an Autistic person may not be able to stop and recover; we may not be able to sense our exhaustion (due to interoceptive differences), masking (it may not be safe to practice authentic expression, it may not even be conscious), responsibilities such as child care, work, and home management. We may have co-occurring ADHD.

What we should try and remember is that burnout is not necessarily a set of observable traits that conform to a checklist. It literally is the result of going into an energy deficit on a regular basis.

Atypical Burnout

The use of the word atypical is not to create a neat category for an observable form of burnout. What we are referring to is burnout that might look different to the typical “depressive” understanding. In our experience it is not at all rare or atypical. We come across this time and again.

What atypical burnout can look like is being stuck in a hyper-aroused state, Tanya often affectionately dubs this as “meerkat-mode”, she describes a meerkat-type nervousness, constantly on the look out for danger, unable to focus and self-regulate creating the need for constant co-regulation with another person, and a fear of being left alone. This is sometimes misinterpreted as attachment disorder because of the childs perceived over-attachment to a parent or safe person. We often see this type of response from children and young people in traumatic school environments for extended periods of time.

This is usually accompanied by significant changes in sensory needs, especially interoception. This can result in a loss of sense of self, and reports of voice hearing. Individuals in this state appear to struggle to differentiate between our own thoughts and something external to their own being. This may be related to the high rates of occurrence of psychosis amongst Autistic people (Varcin et al, 2022).

It would be important at this point to mention monotropic spiral. We may internalise beliefs that seem negative and/or delusional in nature. We can seem stuck in a loop that drags us deeper into these internalised notions.

Rituals and routines can become more pronounced and seemingly compulsive, this is usually in an effort to create some attentional resource and ease an overloaded monotropic neurology.

There is a growing under-current in various circles questioning the validity of the diagnosis of Emotionally Unstable Personality Disorder (formerly known as Borderline Personality Disorder). We know that this is commonly misdiagnosed in Autistic people (Fusar-Poli et al, 2022). We also know that there is a huge amount of sexism involved in the identification of EUPD; women out-number men 3 to 1 in the diagnosis of EUPD (Bjorkland, 2006).

When we reverse that lens, men out-number women 4 to 1 in the formal identification of autism (Rynkiewicz, 2016). Considering the high co-occurence of ADHD and EUPD (Philipsen, 2006) and the well-known co-occurrence of autism and ADHD; is it possible that we might be looking in the wrong direction? Could many of these people be experiencing a protracted, atypical, Autistic burnout?

Or is it just a big coincidence?

References

Adkin, T. (2022) What is monotropic split? Emergent Divergence

Arnold, S. R., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023). Towards the measurement of autistic burnout. Autism, 13623613221147401.1

Bjorklund, P. (2006). No man’s land: Gender bias and social constructivism in the diagnosis of borderline personality disorder. Issues in mental health nursing, 27(1), 3-23.

Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European archives of psychiatry and clinical neuroscience, 272(2), 187-198.

Philipsen, A. (2006). Differential diagnosis and comorbidity of attention-deficit/hyperactivity disorder (ADHD) and borderline personality disorder (BPD) in adults. European archives of psychiatry and clinical neuroscience, 256, i42-i46.

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.

Rynkiewicz, A. (2016). Autism spectrum disorders in females. Sex/gender differences in clinical manifestation and co-existing psychopathology (Doctoral dissertation, PhD Dissertation. Retrieved from Medical University of Gdansk Bibliography Database 2016).

Varcin, K. J., Herniman, S. E., Lin, A., Chen, Y., Perry, Y., Pugh, C., … & Wood, S. J. (2022). Occurrence of psychosis and bipolar disorder in adults with autism: A systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews, 134, 104543.

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.

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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.

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