stress - Emergent Divergence

Jun 5 2023

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

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

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

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

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

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

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

Monotropic Split

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

Atypical Burnout

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

“Autistic burnout is often used by autistic adults to describe a state of incapacitation, exhaustion, and distress in every area of life. Informally, autistic adults describe how burnout has cost them jobs, friends, activities, independence, mental and physical health, and pushed them to suicidal behavior.”
Raymaker et al (2020)

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

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

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

Meerkatting

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

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

Monotropic Spiral

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

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

Psychotic Phenomena

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

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

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

Concluding thoughts

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

Perhaps then we should stop thinking in terms of:

Autistic person + Environment = Outcome

instead considering:

Monotropic person + Environment = Outcome

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

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

References

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

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

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

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

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

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

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

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

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

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

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

Tanya Adkin 0 Comments

Jan 27 2023

Autistic advocacy: The reality of lifting up a community

Many of us as community advocates have dedicated our lives to defending the marginalised and uplifting those that society has tried to hold down. For some of us, this has become our professional job. For others, it is something done on a voluntary basis. Both are as valid as each other. We spend enormous effort on our cause, but in truth, we rarely make space for ourselves. To put it another way; who advocates for the advocates?

Autistic people engaging in community advocacy and activism are just as disabled as the rest of our community. We are not some mythical entities that exist outside of the reality of Autistic experience. We are victimised, we are oppressed, we are invalidated. Many of us have very public facing profiles, and sometimes people forget our right to privacy. It can be exhausting. We have to fight not just for our community but also police ourselves. People online tend to expect perfection. Ironic, given that neurodivesity is almost explicit in its denial of perfection.

Beyond the pressures of being in the public eye, there is the reality of facing the trauma that our community experiences. Many of us fight daily on an individual and community level against the abuse of our community. My first thought, of course, is the Spectrum 10k campaign. Myself and the rest of the Boycott team have shed literal tears trying to hold ourselves together and fight. Another example is the Creating Autistic Suffering series that I co-author with Tanya Adkin. The content of those articles is not hypothetical. It is based on things we have witnessed in our professional roles.

Time and again, we face some of the worst that society gives to neurodivergent people.

I do this work because I love the Autistic community, and I live my work; but I am a human being. There are times when I want to scream and cry and pack it all in. There are times when I feel like an imposter. There are times when I wonder how sustainable it is to get up each day wondering what ableist vitriol I will witness today. I love my work, but it can be draining in a way that can’t be described by any metric I am aware of.

So, why write this? No, not because I can’t cope with it. This work is my calling, and despite the negatives, I wake each day knowing that today, I have the power to make a positive difference for someone. I write this because I want all Autistic advocates (regardless of the nature of that advocacy) to know that I see them. I see you standing up and fighting each and every day. I see you do your best to make sure that the world we leave behind is better than the one we were born into.

Each of us has the power to make change for the better. Our mere existence alters the world in irreversible ways. However, I want advocates everywhere to know that it’s okay to stand back and recuperate.

The reason a choir can sing impossibly long notes is because individual members can breathe while the rest keep singing. In case no one has told you recently; take a breath, the rest of us can hold the note for you.

David Gray-Hammond 0 Comments

Aug 16 2021

Autistic people and suicide: A troubling tale.

It has been known for some time that Autistic people experience suicidal thoughts, ideation, and attempts at a much higher rate than the general population, but one recent piece of commentary paints a stark image of Autistic suffering.

South et al (2021) discuss the field of Autistic suicide prevalence. One of the most uncomfortable truths in their writing comes from Kõlves et al (2021). This study found the incidence rate of auicide attempts and deaths amongst Autistics to be over 3 times higher than the general population. This figure was higher still for Autistic women and Autistics with co-occuring psychiatric conditions.

Why is this?

In general, Autistics have to cope everyday with a system that by its very nature traumatises the Autistic mind. We are forced to mask who we are just to survive.

Just 22% of Autistics are in any kind of employment (Office for National Statistics, 2021), a disturbing figure when you consider that for many, having a job dictates your access to physical and mental health care.

This feeds neatly into the idea of minority stress. Dr Monique Botha-Kite has done some great work in this field and I recommend checking out the live session that Dr Botha-Kite did with Aucademy on the topic.

Botha and Frost (2018) found that as an identity-based minority, Autistic people experience increased social stress throughout their lives. This has a range of impacts that I won’t get into here, but I highly recommend checking out the study here.

We also can not ignore the intersections with the BIPOC and LGBTQIA+ communities, which represent a huge quantity of the community. Both of these communities experience their own minority stress, and we need to familiarise ourselves with how these different stressor interact with and potentiate each other.

The world is not designed for Autistics. It is a harsh environment that is actively killing our people. But what can be done about it?

We need to improve the diagnostic process and post-diagnostic support. Currently many Autistic people wait too long for a diagnosis that comes with exactly zero help.

We need to improve access to mental health and substance use treatment. Clinicians working within these services need to be not only aware of the neurodiversity movement, but actively engaging with and supporting it.

In fact, all professionals working with Autistic people need to be engaging with and supporting the neurodiversity movement.

Everyone needs to familiarise themselves with the unique intersection of BIPOC and Autistic experiences.

Autistic people need improved access to support for LGBTQIA+ issues such as gender dysphoria.

These are a few suggestions that I believe could help improve the suicide rate for Autistic people by improving their quality of life.

It is clear that the neurodiversity movement still has quite a distance to go, but I firmly believe that slowly but surely, we will get to where we are going.

David Gray-Hammond 0 Comments