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

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

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

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

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

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

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

Monotropic Split

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

Atypical Burnout

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

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

Raymaker et al (2020)

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

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

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

Meerkatting

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

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

Monotropic Spiral

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

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

Psychotic Phenomena

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

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

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

Concluding thoughts

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

Perhaps then we should stop thinking in terms of:

Autistic person + Environment = Outcome

instead considering:

Monotropic person + Environment = Outcome

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

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

References

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

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

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

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

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

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

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

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

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

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

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

Tanya Adkin 0 Comments
May 9 2023
How many Autistic people are in inpatient units in the UK?

When we consider the world of inpatient psychiatric care, we often think about types of neurodiversity like schizophrenia and bipolar. While it is true that these individuals represent a considerable number of admissions, there is a darker side to admission to hospital. Detainment and admission is not solely the realm of traditional psychiatric “conditions”; Autistic people are being locked away for months or even years.

This issue has become so prevalent that the government has had to commission inquiries and reports into the matter. Still, there are a disturbing number of Autistic people locked away in these institutions.

According to the National Autistic Society, as of January 2022 there were 1,185 Autistic people held within the inpatient psychiatric system. Of this, around 1 in 7 (165) were under 18 years of age. It’s not just Autistic adults being detained, it’s our children too. This represents a stark departure from the so-called schemes of “care in the community” that promised to empty asylums and create a community culture of caring for our most vulnerable.

Instead what has happened is the systematic incarceration of Autistic adults and young people for no other reason than not having the correct services in place to support them in their independence. This becomes even more concerning when you consider the current rate at which care home and inpatient units are experiencing scandals around the mistreatment and abuse of those they are supposed to care for.

Autistic people are being abused daily in these settings, despite evidence to suggest that inpatient units are inappropriate settings for Autistic people. What we are seeing is the systematic practice of locking away people because our society is unwilling and unable to give them meaningful support at home. To my mind this is against the Mental Capacity Act (2005), in particular principles 4 and 5 of the Code of Practice:

“An act done, or decision made, under this Act for or
on behalf of a person who lacks capacity must be done, or made, in his best interests”

Principle 4, Mental Capacity Act Code of Practice

“Before the act is done, or the decision is made,
regard must be had to whether the purpose for which it is
needed can be as effectively achieved in a way that is less
restrictive of the person’s rights and freedom of action.”

Principle 5, Mental Capacity Act Code of Practice

Given that inpatient treatment does not improve outcomes for purely being Autistic, there is a significant and unresolved risk of abuse, and the overt removal of a person’s freedom, I would argue that both principles 4 and 5 have been failed. One might argue that the Mental Health Act (1983) should take precedence which allows for the detention of people who are at risk to themselves or others.

First I would bring your attention to this section of the Code of Practice:

“The MCA should be central to the approach professionals take to patients who lack
capacity in all health and care settings (including psychiatric and general hospitals).
The starting point should always be that the MCA should be applied wherever
possible to individuals who lack capacity and are detained under the Act.”

Section 13.11, Mental Health Act Code of Practice

We have to consider what is being classed as risk, and whether the deprivation of a person’s liberty is necessary. I posit that in most cases, Autistic people remain in inpatient settings because services have no resources to appropriately address their dysregulation in the community.

An Autistic person’s freedom should not be decided by government funding.

To boot, the prinicples of the act itself state that professionals should use the:

“Least restrictive option and maximising independence”

SWLSTG NHS Trust

In what world is indefinite detention in an institution the least restrictive option? Since when does detention be decided by community resources? This is a dangerous precedent to set, it opens up the entire neurodivergent community to facing detention.

When we consider the Royal College of Psychiatrists disturbing statistic that Autistic people are nine times more likely to die by suicide, and combine that with the fact that according to The Nuffield Trust there were 1,357 suicdes in 2019 amongst people who had been in contact with mental health services. Something is going very wrong, and I suspect that, in part, it is the number of Autistic people being detained wrongfully under The Mental Health Act.

It is clear that this situation is out of control. Autistic people should be supported to freely live their lives, not spend years locked in seclusion rooms suffering chemical and physical restraint as a daily practice. Sadly, until such time that our government supplies appropriate funding and resources to services, we are going to continue to witness the systemic mistreatment and killing of Autistic people.

We are Autistic, not monsters to be hidden away from society.

Make sure you check out the CAMHS crisis resource page.

For more of David’s writing, Subscribe to his Substack and check out his books!

David Gray-Hammond 1 Comments
Apr 7 2022
Addiction advocacy and the inspiration paradox: A reflection at 6 years sober

Today I am 6 years sober from addiction. During those six years I have learnt many lessons, but in this reflection I would like to consider something that has played on my mind for the past three years of my advocacy work.

Inspiration.

While not overtly a bad thing, it is often misused to infantilise and minimise the achievements of disabled people while hiding behind a mask of feigned respect. This phenomenon is known as “inspiration porn”.

A good (hypothetical) example of such a thing would be a video of a disabled person doing something completely mundane, like dancing, but they would be dancing with a non-disabled person. The video would centre the non-disabled as some kind of saviour to the disabled person for doing something as basic as treating them like a human being. The implication of the video, albeit in subtext, would be “Look at the amazing things that disabled people can achieve when an abled person rescues them from their shameful existence”.

It’s dehumanising and wrong.

So, addiction advocacy.

As a recovering addict in the public eye, I do what I do because I want to help others overcome similar challenges to my own, and help reduce their suffering. This does in fact require inspiring people. If it weren’t for the sober addict who showed me kindness during my first stretch on a psychiatric ward, I might not have chosen recovery.

The fact that they had turned their life around, and become someone I wanted to look up to was inspiring, and that isn’t a bad thing.

What would be bad would be if people like myself are allowed to become another source of inspiration porn. It’s a difficult line to walk. I want people to have what I have found, not get off on the tragedies that have formed who I am.

Contrary to popular belief, addicts are people. We are not burdens, we don’t deserve our suffering. Regardless of whether or not we are in recovery, we deserve food, housing, health care, support, and kindness.

This is what I want to inspire in people.

So please, don’t look at me and think it’s a miracle that I recovered. My recovery shouldn’t be the inspiration. I was privileged to have a loving and supportive set of family and friends. I had good key workers (although the services they came from were woefully ill-equipped). I was in a place where I was ready to enter recovery.

What I want to inspire in you is the idea that all addicts deserve recovery. I want to inspire you to challenge the systems that keep people like me trapped in a world of suffering.

I want you to know that those with less privilege than myself need us to get in the trenches and help them fight this war.

If that is what I inspire in people, then I am happy with what I am doing. If, however, you look at me and see a walking miracle, then I have not gone far enough.

The tragedies and traumas of my life should not be celebrated. They should be wielded as weapons to dismantle the masters house, and rebuild it into something where we can all coexist and thrive.

David Gray-Hammond 0 Comments
Feb 14 2021
Undiagnosed: inpatient treatment, pre-diagnosis

Something I haven’t spoken about in great detail is the experiences I have had in an inpatient psychiatric facility. There was good and bad in the experience, but unfortunately, it was overall, quite traumatic.

I have been an inpatient twice in my life, the first was because I required an inpatient detox to help me get sober, the second (the one I will be focusing on) was due to psychosis.

It was around the beginning of May 2016 when it happened. My voice hearing and paranoia had been getting worse since finding sobriety, and one night I just snapped. My mother found me catatonic in the living room, muttering about things that she didn’t understand.

An ambulance was called and I was taken to the local accident and emergency department for immediate psychiatric assessment. Upon assessment, it was made clear to me that I could go into the psychiatric hospital voluntarily, otherwise they would section me.

The psych ward was a scary place, many of the patients (to my eye) were far more ill than I was. I felt as though I was being held without due course.

At the time, I did not have an autism diagnosis, and was in fact diagnosed with Emotionally Unstable Personality Disorder (also known as Borderline Personality Disorder, according to my psychiatrist). This diagnosis was used to invalidate and gaslight me throughout my entire hospital experience.

As many will know, the NHS here in the UK is terribly understaffed due to government cuts. This was no different on the psych ward. Between 5 and 8 members of staff were responsible for around 20 patients, all of whom were profoundly ill.

Many patients were violent, and little happened to them. When I did see restraint (both physical and chemical) it was used on a small woman who had already calmed down. It seemed to me that medication was a punishment in there, rather than the lifesaving treatment that I know it to be now.

I was having regular meltdowns, I tried to elope several times. I was threatened with police and told that I was attention seeking and “seeking” specific diagnosis. There answer was to pump me full of antupsychotics. By the time I was discharged, I could barely string a coherent sentence together.

This practice was known as chemical restraint, and it was used to make patients easier to cope with when the staff were so terribly outnumbered.

I knew my diagnosis was wrong, and my psychosis continued long after I was discharged.

Being an Autistic in a psychiatric hospital was honestly, deeply traumatising. I was invalidated and gaslit at every turn, I was bullied by other patients, I was treated as a nuisance. I would like to think that a formal diagnosis would have resulted in at least some understanding, but sadly that didn’t happen until the following November.

Inpatient facilities need to look really carefully at how they recognise and engage with autistic patients. The experience was so unpleasant for me, but I wasn’t safe anywhere else, so I felt trapped.

It was the longest month of my life, and thankfully I now have an advanced directive in place stating I should only be hospitalised if nothing else is working.

Psychiatric hospital is necessary for some, but in this country, it has a long way to come in how it handles autistic patients.

David Gray-Hammond 0 Comments
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