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Sep 4 2023
Autistic people, energy accounting, and boundaries

In my day job, I talk to a lot of Autistic people. I mean a lot of Autistic people. One of the most common questions I am asked is how to better account for limited reserves of energy and cognitive resources. The answer sounds deceptively simple, but in reality, it can be a really complicated practice. I’m talking about the creation and maintenance of boundaries in Autistic people’s lives.

Why are boundaries so complicated for Autistic people?

As Autistic people, we have grown up in a world that doesn’t care for our boundaries. We are taught from a young age that our needs and wants do not matter and that we should live our lives for the comfort of others. This attitude is most pervasive when we look at the high rates of trauma in our community. We also can not forget the effect of being late-identified and the role of intergenerational trauma.

For many Autistic people, our earliest memories are of people denying our sensory needs, invalidating our communication styles, ignoring the very things that would help us participate more equally in a world not designed for us. This means that by the time we reach adulthood, we are much less likely to be willing to maintain our own boundaries.

What does ignorance of boundaries teach Autistic people?

Autistic people are often accused of overstepping boundaries, especially in childhood. I would point out to the casual observer that we expect Autistic children to give more to society than society is willing to reciprocate. We teach Autistic children that boundaries do not matter and then penalise them for lacking awareness of social niceties.

There is then the wider issue of Autistic wellbeing. Adults with poorly maintained boundaries will inevitably experience lower levels of wellbeing than people who are able to sagely self-advocate. Autistic people often spiral in and out of burnout, unable to sagely set boundaries that are vital to their energy accounting.

How does ignorance of boundaries effect Autistic identity?

One aspect of the importance of boundaries that is rarely talked about, but very important, is that of its effect on our sense of identity. In my own life a lack of clearly defined boundaries kept my queerness closeted for decades. Because I was not able to advocate for.myself to others, I could not do the internal advocacy work I needed in order to identify my queer identity.

No one talks about it, but when you have grown up being constantly invalidated, you absolutely have to advocate to yourself. We have to battle and dismantle the internalised ableism and normativity that has kept us trapped within societies definition of “us” rather than exploring what the means to ourselves.

How can Autistic people begin to maintain boundaries?

Autistic people can begin to identify and maintain boundaries through self-exploration. For some, this may be an isolated affair, while others may engage with peer mentorship. This is where a sense of AuSociality becomes important. By socialising Autistically with Autistic people, we can begin to learn what our Autistic profile is and, therefore, what our unique set of strengths and struggles are.

When we know who we are and what we need, we are in a stronger position to begin self-advocacy to the wider world, and subsequently, we can begin to improve our sense of wellbeing.

David Gray-Hammond 0 Comments
Aug 18 2023
Five things that help me when I’m experiencing Autistic burnout

Autistic burnout can present itself in many different ways, not just the depressive state that observational models have taught us to expect. Despite assertions to the contrary, sometimes burnout is more than a need to withdraw.

Conceptualising Autistic Burnout

One might describe burnout as

“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”

Raymaker et al (2020)

Of course, due to the infinite possible interactions with one’s Self and environment, there are infinite ways that Autistic burnout can present. Raymaker et al (2020) go on to conceptualise the mechanics of burnout.

Figure taken from Raymaker et al (2020)

Using this, I can begin to explain the things that help me when I am experiencing Autistic burnout.

What helps me with Autistic burnout?

  • Sensory Input
    • A good sensory diet is helpful to myself. I use dark rooms with colourful lighting and star projectors. I also use an oil diffuser. Besides the typically expected sensory input, I might mention that physical activity that engages my proprioceptive sense can also help with waning interoceptive accuracy.
  • Nesting
    • I have discussed in a previous article my AuDHD habit of nesting. While having a sensory safe space is a part of this, what is also important is that this space is safe from intrusion by the outside world. Sometimes, I need space to think and process whatever is going on in my mind in order to function in a world that can be quite hostile.
  • Boundaries
    • This one follows on quite nicely. We have to not only understand our strengths and struggles, but also enforce boundaries that compliment them. Learning to say no can feel quite villainous at first, but only when we make space for ourselves can we properly energy account. It is okay to make space for yourself.
  • Trust yourself
    • As Autistic people, we are constantly invalidated and gaslit about our experience. It is vital that we learn to trust ourselves on matter that pertain to ourselves. Nothing will drain you quicker than constant self-management. It is also impossible to enforce boundaries when we believe they are uneccessary or an overreaction.
  • Slow and Planned transitions
    • Autistic people experience cognitive trauma when they are forced to rapidly disengage and re-engage with different tasks and demands (more on this here and here). It is important that we slow down our transitions during burnout as in my experience we are more prone to that cognitive trauma during these time.

Final thoughts

As with everything, different things will help different people. The most important thing is that we treat ourselves with the same kindness that we would another. Humans of any neurocognitive style were designed for the cognitive equivalent cruising speed, it is not sustainable to move at maximum velocity without a break.

More than anything, you need to know that Autistic burnout is a logical consequence of our intensely hostile world. You are not worth less for struggling, and you are not alone.

David Gray-Hammond 0 Comments
Aug 7 2023
CAMHS don’t just deny Autistic children support by not seeing them

Child and Adolescent Mental Health Services (CAMHS) are the main providers of mental health support for children and young people on the UK. Despite this, many Autistic people and their families find that they are turned away from these services because CAMHS are not equipped to work with us. Autism, it seems, represents a riddle they are unwilling to solve. However, CAMHS failure to support Autistic children is broader than gatekeeping access.

How far does CAMHS refusal to support Autistic young people reach?

To really answer this question, we have to consider the myriad ways that CAMHS has become an inappropriate service for the support of Autistic children.

  • A lack of competency around Autistic experience and presentation
    • In this context, I am talking about neurodivergence competency. This requires more than theoretical study of autism. To be competent in neurodivergent experience and culture requires us to be fully engaged with communities and participatory/emancipatory research. It requires us to have an intimate knowledge of the kinds of challenges that Autistic people face.
  • Poor diagnostic practice
  • Institutionalised Parent/Carer Blame
    • This is a significant issue. It ranges from the implicit blame that is assigned when parents/carers are sent on parenting courses to the explicit and life destroying use of accusations of Fabricated and Induced Illness (FII). This forms part of a wider pattern of defensive practice that aims to shift responsibility from the service into the family unit.
  • Crisis Driven Intervention

Collectively, this non-exhaustive list of failures set the scene for a service that can be actively hostile towards Autistic service users. The fallout of these practices and significant gaps in knowledge are broad in impact. Not only are we looking at the risk to the child, but also the collapse of entire family units.

When CAMHS mistreat and present hostility to young people, it is the entire family unit that suffers. What we are looking at is the systemic traumatisation of all who support the child or young person. For every young person failed by CAMHS, entire families are becoming potential mental health service users. For a country that speaks so often of the need to reduce expenditure, we are certainly making things more expensive when we fail a single service user so badly that we create multiple new ones.

Autistic children and young people deserve more than this, and so do their families.

Please sign this petition regarding CAMHS failures to support Autistic children.

Click here to get a ticket to David Gray-Hammond and Tanya Adkin’s seminar on Autistic burnout (9th August 2023 @ 7pm BST)

David Gray-Hammond 0 Comments
Jun 30 2023
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.

David Gray-Hammond 4 Comments
Jun 6 2023
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.

Tanya Adkin 4 Comments
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 2 Comments
May 12 2023
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.

Tanya Adkin 12 Comments
Jul 14 2022
Guest Post: What is monotropic split?

This guest post was authored by Tanya Adkin

“At any one moment, the amount of attention an individual can give is limited”
(Murray et al., 2005)

So, what happens when a monotropic mind is forced to live in a polytropic way?

A monotropic individual focuses more detailed attention over fewer attention streams than a polytropic (non-Autistic) individual. When they are forced into environments where they must perform like a polytropic person, the amount of attention to detail they apply to multiple attention streams doesn’t decrease, all that happens is the monotropic mind experiences trauma by being pushed into trying to give more attention than any individual can cognitively give.

I call this monotropic split. The monotropic mind is having to split its attention and give more mental energy and attention than it has available to be able to withstand the environment it is in and remain safe.

When we think of an Autistic person experiencing overwhelm, we are thinking of a monotropic mind taking on more than it can process and creating meltdown or shutdown. Therefore, experiencing monotropic split is the cause of meltdown or shutdown.
When we think of an Autistic person who masks, “copes” and “gets by” which eventually leads to burnout or mental health crisis, we are again thinking of a monotropic mind being forced to perform in a way that traumatises its processing capabilities. This is monotropic split causing trauma, burnout, or mental health crisis.

When we think of a child stuck in a constant state of hyperarousal, looking out for danger because they are being put through a school system that forces them to perform polytropic tricks. Monotropic split and the subsequent cognitive trauma is the cause of the constant hyperarousal.

Autistic demand avoidance is a result of monotropic split because the Autistic person simply has been working in a state of attention hyperactivity for so long that they cannot tolerate any demand as that would re-traumatise their already overstretched attention capacity, so therefore they avoid the demand.

Monotropic split is something that every Autistic person experiences to varying degrees as a result of existing in an unaccommodating world.

Autism + Environment = Outcome.
(Beardon, 2019)

Tanya Adkin 11 Comments
Jul 12 2022
Autistic people and the burnout-psychosis cycle

Trigger Warning: This article discusses burnout and psychosis

While it is evident to myself and my colleagues that Autistic people have a predisposition towards psychotic phenomenon, it seems to be a relatively new discovery to many of the mental health professionals I have talked to. Research that is non pathological in this area is sparse.

Despite this, acute psychosis and psychotic conditions seem to be emerging in the Autistic community (anecdotal, based on experiences of myself and colleagues). Some might suggest this is due to the increased stress that we have faced since 2020.

I feel at this point it is important to discuss a phenomenon I have been witness to in both myself and others. I refer to this as the Burnout-Psychosis Cycle.

To begin with, we will look at the infographic I recently posted to the social media page I run.

IMAGE DESCRIPTION Pastel red back ground Image title reads "The Autistic burnout-psychosis cycle Image depicts a flow chart at the top is the word "catalyst" which leads into the start of a cyclic flowchart. "Catalyst" leads to "burnout" "Burnout" leads to "monotropic hyperfocus" "Monotropic hyperfocus" leads to "monotropic spiral" "Monotropic spiral" leads to "psychosis" "Psychosis" leads back to "burnout" thus beginning the cycle again. Emergent Divergence logo is in the centre of the image.
The burnout-psychosis cycle

Once something places us into a state of burnout, Autistic minds seek to return to their natural state of monotropic attention tunnels. We hyperfocus.

We then get caught in an attention tunnel regarding something that is traumatic to think about, unable to shift our focus from that attention tunnel. This causes distress. Tanya Adkin refers to this as a monotropic spiral.

As we become dysregulated, our sensory experiences also become dysregulated. This is where we may start to have hallucinations, and experience emotional dysregulation such as paranoia or mania. This is the psychosis part of the cycle.

Unfortunately, psychosis leaves the person burnout, starting the cycle again.

In order to break this cycle, we need to ensure that the burntout person has the time and space to engage their attention tunnels within their special interests. Things that will bring them joy and recover their spoons.

It is possible to break the cycle through the treatment of the psychosis, but medication doesn’t generally help burnout.

More research is needed in this area as this is based on anecdotal evidence, rather than peer-reviewed research. Autistic people need to speak loudly about this where and when it is safe for them to do so.

The ramifications of becoming psychotic can be serious. People experiencing psychosis may put themselves in danger, or rarely, endanger others. It may be necessary to detain the individual and have them admitted to an inpatient facility.

While these facilities have their place, it is not a positive experience for many Autistic people, and can add to the burden of trauma that led to the cycle starting in the first place.

When working with Autistic individuals, we need to be holistic in our approach and consider all the factors co tri using to burnout.

Until we do this, we will not be meeting their needs.

David Gray-Hammond 5 Comments
Sep 3 2021
Untitled poetry regarding S10k

Written anonymously by a friend

On the 24th august an announcement was made
Alarm bells rang as a friend was disdained

On mainstream media on a pedastool
Research was announced treating us like we are fools

Processing began…. Numb, shutdown, uncertainty
Then came the realisation, this was aimed at me

A direct insult, a direct threat,
to me, my children and those I respect

Anger and tears, meltdowns took over
Tears in the car, crying over and over

I think of my children so innocent and pure. We have to protect then… keep the scientist from the door

Autistic communities are loyal, fierce and strong

We will keep fighting, you won’t silence our song

David Gray-Hammond 1 Comments
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