Trauma - 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

May 27 2023

Why is it so important for CAMHS to support Autistic children?

Autistic children, much like Autistic adults, live in a world that bombards them with traumatic experiences. There is often a misunderstanding around what trauma is caused by the neuronormative standard of what is allowed to be viewed as traumatic. The truth is that trauma can look different for Autistic people. Trauma that often lands our children on a CAMHS waiting list.

It is no surprise then that in a previous article I found that 70% of Autistic people experience issues with their mental health compared to 25% of the general population. This has resulted in a staggeringly high suicide rate with equally concerning numbers for the number of attempted suicides. Autistic people are losing their lives because of the cruelty and mistreatment inflicted upon them by this world.

Why is it then that CAMHS is turning away children who carry a label of “autism”? As soon as that word is queried or associated with the Autistic person, many services will turn them away. If you are Autistic and on a CAMHS waiting list, you very quickly learn that your struggle is not something that can be supported.

Autistic children are often referred onto disability services that lack the understanding to support their mental health needs. Too many Autistic children need CAMHS but are instead offered services that lack the expertise to support them. It seems as though there is some circular logic going on here.

CAMHS won’t support Autistic children because they lack the specialist knowledge to do so. However, because this means that Autistic children represent a small amount of their service users, it is deemed that there is no need to upskill their staff. It becomes an iron circle of failure.

Beyond this, CAMHS aren’t even offered the funding to upskill their staff. Mental health services in general have faced decades of underfunding meaning that despite the government’s promise of £150 million in additional funding for mental health, it is likely that this situation is far from fixed.

CAMHS are not just turning away Autistic children. They have a significant lack of competence with regard to Autistic people. This, in part, can be traced back to the medicalisation of Autistic experience and the ignoring of Autistic voices. A lot could be changed simply by inviting Autistic researchers, advocates, and activists into clinical commissioning meetings.

Fundamentally, the first step is to have Autistic children admitted to CAMHS services. The current situation allows for their existence to be ignored, creating environments with no requirement for doing better. We can’t stop there, though, because to do so would be to relegate Autistic children and their families to the position of perpetual educators. Autistic people are not a free educational resource.

We are real people with real lives. Autistic children, like any children, feel love, fear, happiness, and sadness. All Autistic people are threatened while the younger generations of our community are inappropriately supported. We need to create a world that says yes to supporting Autistic children rather than bickering amongst themselves over who is the most qualified to support them.

If you want to be a part of making a difference, please sign this petition.

Check out more on this topic on the CAMHS Crisis resource page.

To support my work, please consider purchasing a subscription to my Substack.

David Gray-Hammond 1 Comments

May 21 2023

Autism and addiction: co-existing with a mind that seeks oblivion

The narratives around autism and addiction are both peculiar. Things are the same while appearing different. On the one hand, autism is viewed by wider society as something that happens to a child, as if an unseen force has stolen their humanity. On the other hand, addiction is seen as a moral failing. We are often told that we chose that life.

The one thing they both have in common? People see you as less human than they are.

There are a multitude of reasons for this, but at the core of this experience are the power dynamics within a person’s life. You could be forgiven for believing that the power horizon within and Autistic or addicted person’s life can only be felt in the immediate vicinity, but it stretches much further. Both autism and addiction narratives are controlled and perptuated by governments and media.

The public views us through the information disseminated by those in power.

This makes for an upsetting experience when we are both Autistic and in the throws of addiction. Autistic people are infantilised and mourned as tragedies, but addicts are positioned as hedonistic and selfish. They contradict each other. Most people don’t understand how an Autistic person could become the monstrous embodiment of addiction (and there have been times when I was in active addiction that I was monstrous).

In a study from the University of Cambridge, Autistic people were less likely to report recreational drug use, but nine times more likely to report self-medicating with recreational drugs. Specifically, we were more likely to report using drugs for behaviour management and alleviation of psychologically distressing experiences.

There is a significant link between trauma, addiction, psychological distress, and perceived challenging behaviour. Trauma underlies all of these things. At this point I feel it necessary to highlight that Autistic people are More likely to experience PTSD. I have also explored our relationship with trauma with Tanya Adkin in a wider context here.

The real issue is that addiction professionals tend to lack cultural competency with Autistic people, meaning that they lack the nuanced understanding of the reasons why we use drugs and what that use may look like. This results in an environment where Autistic service users are seen to not engage well or even resist treatment. Rather than consider how to adapt the environment to suit the Autistic person’s needs, we find ourselves left out in the cold.

For me, this meant that once I was a few months sober, I was left with nowhere to turn but twelve-step programmes that really didn’t meet my needs well. I eventually realised that if I was going to stay sober, I had to learn how to do it on my own. Yes, I had supportive friends and family, but no peers to support me from addiction communities.

This is ultimately how I ended up doing g the work I do. I had to learn to co-exist with myself, and part of that process was to use my suffering for something positive. I can’t take back the pain and the wrong turns, but I can hone them into something that can make a clear path for others to walk. I can’t undo the past, but I can make sure that others don’t have to struggle the way I did.

I had to become altruistic. It was a difficult process because the addicted mind is focused on one thing, instant gratification, instant relief from the pain of existence. Existence can be so very painful. Through altruism, I had to teach myself that not everything pays off immediately and that the time I spend working towards something good will often be far more gratifying than popping a pill or smoking a pipe.

I still battle with myself from time to time. Addiction doesn’t just disappear. I have moments where my brain tells me to throw it all away, but co-existence has taught me that I don’t have to listen to the self-destructive thoughts. I have learned it’s okay to pause and wait.

Addiction is one hell of a fight, but coming out of the other side of it is a beautiful thing. It doesn’t make us less valuable to the world. It gifts us a determination to achieve our goals that nothing else can. Recovery is not a straight path, and there are times when we feel like turning back. The journey is worth it. The grass is, in fact, greener on the other side; I know, I’m here.

David Gray-Hammond 0 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.

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 3 Comments

May 12 2023

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.

David Gray-Hammond 2 Comments

May 11 2023

What is it about ABA that is so harmful to Autistic people?

There are many things within this world that can cause controversy in minority communities. One less discussed in mainstream society, but of significant interest to the Autistic community is Applied Behaviour Analysis (ABA). Nothing sets Autistic Rights activists ready to march into battle quite like the normative violence of behaviourism.

So, what is ABA?

ABA is based on a school of psychological thought known as behaviourism. Behaviourism itself being a social science that uses observable behaviour to investigate psychological values of an organism. Behaviourism is in a lot of things that we interact with. In fact, if you own a dog, you have probably already encountered it.

ABA, then, is an applied version of this science. It uses functional analysis of an individuals behaviour to identify the function of a given behaviour with the intention of identifying target behaviours to be extinguished or reinforced.

This is done through the use of positive reinforcement (for example, rewarding a behaviour) and aversive techniques ranging from planned ignoring to the use of electric shocks. The aim of these techniques is to make an individual conform to societies normative standards of behaviour, which is why it’s relevant to Autistic individuals.

Many people state that Lovaas created it after his work on The Feminine Boy Project (Gay Conversion Therapy), which utilises the same techniques. Technically, this is true, although it would be more accurate to say that Lovaas took a technique that already existed and made it much more sadistic. Behavioural Analysis was, in fact, seen as early as 1947 within the context of animal behaviourism in Arkansas.

Lovaas was famously known for stating that Autistic people looked like humans, but were more akin to something sub-human that needed to be constructed into an acceptable form. It is unsurprising then that much of his work on ABA was informed by the sadistic practice of Gay Conversion Therapy.

Back to the point

History aside, ABA is a harmful practice, and it’s particularly offensive when we consider its use among neurodivergent people.

Our current society is built from the bottom up. The economic policies and cultural practices in many parts of the world are built on a foundation of colonialism. This has led to a prominent neoliberal attitude that individuals should be self-reliant producers of profit that adhere to certain standards of behaviour. These standards can be considered the basis of normativity, although more specifically we need to talk about neuronormativity.

What is so dangerous about neuronormativity is that it requires us to embody our neurology and experience of the world in very specific ways. Any deviation from a perception of ‘normality’ is seen as abberant and in need of correction. It has significant links to other forms of oppression, such as white supremacy and queerphobia.

How does this relate to ABA?

The purpose of ABA is to assimilate an individual into these neuronormative performances of behaviour. It does not take regard to whether this performance is comfortable for the individual, and it takes little account of the damage that the process of forced assimilation can have on a person.

Autistic people are monotropic. We have minds that prefer singular, hyperfocused attention tunnels. Our cognitive resources preferentially assign themselves to one thing at a time, building inertia that can make rapid transition between points of focus a traumatic experience.

This presents an issue when we consider that a neuronormative approach to the world is designed for a polytropic mind that can assign its cognitive resources across multiple streams of focus simultaneously without building too much inertia. ABA encourages Autistic people to live polytropically.

Why is this a problem?

Autistic people who are forced to behave and live polytropically are at risk of a phenomenon called monotropic split. This is caused because a monotropic mind can not regulate its attentional resources across multiple streams. Monotropic split can ultimately lead to a range of mental health concerns and even suicidality.

ABA creates this issue for many of the Autistic people who go through it.

This is why I view ABA as a tool of normative violence. It is an aggressive tool of forced assimilation that does not care for the harm it does. Many ABA practitioners will claim that ABA is no longer harmful, but while its goals remain to force conformity, it will create this issue of monotropic split.

In order to create happy and healthy Autistic people, we need to support them to be as independent as possible in the world while living in a way that is comfortable for them. This means allowing Autistic people to be interest-led, and to regulate their senses and emotions naturally rather than hide their struggles for the comfort of others.

I am not a fool. ABA won’t be ended overnight. It is a billion dollar industry that uses lobbying and misinformation to maintain its hold over stakeholders. In the short run, we have to focus on harm reduction efforts, which can range from supporting survivors to sewing the seeds of dissent amongst its practitioners.

We can not and will not stop speaking out against it. Slowly but surely, we can shift the power imbalance. However, we have to recognise that while the foundation of colonialism exists, practices like ABA will remain an issue for those who do not adhere to the cult of normality.

David Gray-Hammond 0 Comments

May 8 2023

Mask on, Mask off: How the common understanding of Autistic masking is creating another mask

This post was authored by Tanya Adkin

Over the years I’ve been privileged enough to play a part in the discovery journey of what must be hundreds of Autistic people. One of the questions I am frequently asked about masking is “how do I unmask?”, as if there is a more authentic version of themselves that exists below the layers of neuronormative conditioning and the traumas that come with that.

My answer is often received as quite shocking. You don’t unmask. Not consciously, at least.

Masking tends to be commonly understood (thanks to some really interesting literature) as a choice. Almost as if when somebody suggests that we are Autistic, or we come to that realisation, we can begin to remove parts of ourselves that we deem “inauthentic” or “forced”, but where is the roadmap that tells us which parts are inauthentic or forced? How do we know what is the mask and what is us?

Autistic masking (also referred to in the literature as camouflaging, compensation, and most recently “adaptive morphing”) is the conscious or unconscious suppression of natural responses and adoption of alternatives across a range of domains including social interaction, sensory experience, cognition, movement, and behavior.
Pearson & Rose, 2021

To sum up the above quote, while we can consciously choose to conceal authentic Autistic expression as a way to avoid stigma; masking is also an unconscious projection of acceptability in an effort to avoid traumatic situations that arise from our differences. Projecting acceptability does not just mean pretending to appear more neurotypical.

Much like water, we take the shape of our container. To put it another way, we don’t choose the form that our masking takes, the environments we exist within often choose it for us. This is why many Autistic people experience internalised ableism, the environment of neuronormative society teaches us that we are broken and unworthy.

These attitudes are taught to us from the moment we commence education. Schools that give out attendance rewards, and punish children and families that struggle to engage, usually because of unmet needs or disability.
Gray-Hammond & Adkin, 2021

This feeds back into Beardon’s Golden equation:

Autism + Environment = Outcome

It stands to reason then that if you have been unconsciously masking for a significant amount of time in order to protect yourself due to previously traumatic experiences, you may not even be aware of the ways in which you conceal yourself. Traumatic experiences for an Autistic person are unavoidable (Gray-Hammond & Adkin, 2021), therefore an unconscious response to said trauma in the form of projecting acceptability is also unavoidable.

50% of Autistic people are alexithymic (Kinnaird et al, 2019). Which means that we have difficulties reading, interpreting, or even feeling our emotions. Emotions are an internal sense, this sense is called interoception. When we talk about alexithymia what we are talking about is interoceptive differences specifically related to our experiences of emotion. If we have interoceptive differences, how are we supposed to know which internal authentic expressions we are unconsciously masking?

I posit that masking is one of the most authentically Autistic expressions. It’s been argued that not all Autistic people mask, what we actually know is that all people mask, regardless of their neurology. This has been called many different things, from “using a telelphone voice” to code switching. All of us mask, it’s a human experience. For monotropic people, who cannot perform neurotypicality as comfortably as a polytropic person might, the taxation on one’s attentional resources can be huge. This then leads to monotropic split (Adkin, 2022), burnout, potential suicidality, and mental health concerns.

If all humans mask to some degree then so do all Autistic people. We need to get rid of the notion that masking is appearing more neurotypical. This may not be achievable for everyone. There are often phrases thrown around such as “high-masking” or “unable to mask”. To me this is repackaging of functioning labels. Truth be told if we are basing our analysis of somebody’s ability to mask on how neurotypical they appear, we are missing the entire point of an unconscious trauma response.

If cognitively privileged Autistic people are unable to articulate the beginnings and ends of an unconscious mask, then who are we to impose our own unconscious masking onto another. We are reinforcing neuronormative and ableist stereotypes by assuming that all masking is about performing neurotypicality, and that neurotypicality is something we should emulate.

When we discover our Autistic identity, our environment changes. The vessel in which we exist is changing shape, so therefore so are we. This could be the literature, the information absorbed in google searches, the attitudes around us (such as those of Autistic advocates). It could reinforce negative views of ourselves.

What people are really asking is not how to unmask, but “how do I behave more Autistically?”

The unconscious masking is so ingrained into us that the assumption is often “if I behave Autistically, things will be better”. Which in its own way is a conscious expression of masking in order to avoid the traumas which masking created in the first place. It follows a cycle of imposter sydrome. Doubting one’s identity, because you don’t flap your hands, or because you are considered “sociable”. I am not ashamed to admit that I have been formally identified twice because of this.

We share commonality but when you’ve met one Autistic person, you have met one Autistic person. Our life experiences (like it or not) shape who we are. The concept of unmasking can oftentimes (in my experience) create somewhat of a secondary identity crisis. You unconsciously consider yourself not neurotypical enough, but also not Autistic enough. Further from this, we can see exaggerated expressions of the Autistic Self as a way to project acceptability within the new environment in which we now exist. Also, as a way to deter potentially harmful environmental interference.

We become angry, and rightfully so. We may notice that we have been too passive, we are given a licence to lean into stereotypical Autistic expression. There is nothing wrong with that. One could say that we try on the Autistic mask because this is how we have been conditioned to behave.

It is still very much an unconscious projection of acceptability in order to keep oneself safe. So therefore, we do not unmask in the way that many think we do; we do not peel of our face to leave by the bedside at night time. You are already authentically Autistic.

It takes time, but what we can do is become more aware of our environments and reframe our own experiences thus far, which eventually, hopefully, leads us to exist in a way that is least taxing on our internal resources but also keeps us safe.

References

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

Gray-Hammond, D & Adkin, T (2021) Creating Autistic Suffering: Ableism and Discrimination. Emergent Divergence. emergentdivergence.com

Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89.

Pearson, A., & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52-60.

Tanya Adkin 2 Comments

May 5 2023

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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David Gray-Hammond 1 Comments

May 3 2023

Children are being seriously injured for displaying “challenging behaviour”

All statistics mentioned in this article are taken from The ICARS Report into the use of restrictive practice in England, information take from The Equality and Human Rights Commission, Human Rights as detailed by the United Nations, and The Royal College of Psychiatrists.

There is a growing belief in the world that the use of corporal punishment, ranging from smacking a child through to more archaic forms of punishment, are unacceptable. While this is a good thing, to me it shines a light on the hypocrisy that is currently at play.

While remaining a global phenomenon, restrictive practice is still widely used, and in particular it can be found in specialist settings where people work with disabled students who more likely than not have experienced a great deal of trauma. Autistic people in particular are likely to be traumatised, this is because of the way that the world is designed. There are myriad ways that the world does harm to us.

This becomes deeply problematic when we consider the way that restrictive practice takes place. While used as an intervention for perceived “challenging behaviour”, it would be more accurate to view restrictive practice as an intensive intervention for dysregulation.

Allow me to take a step back and consider the nature of such practice. Restraint is the use of techniques that restrict a person’s ability to act freely. Often when we consider such techniques, we imagine people being held to the floor, but we can see not just the use of mechanical restraints, but also chemical restraints in healthcare settings. Such restraints are employed by the use of drugs that inhibit a person’s ability to act freely.

As you can see from the off set, restrictive practice represents a significant issue in the human rights and ethics of working with disabled people. The hypocrisy lies with the people who speak out against corporal punishments while employing the use of restraint. While such practices are supposed to be “last resort”, 78% of those included in the ICARS report reported that their child had been a victim of restraint prior to the age of 10 years old.

Another concerning statistic is the number of children who were harmed by restraint. The ICARS report found that 97% of respondents were harmed, while restraint was only recorded 59% of the time (breakdown of statistics below). My interpretation of this data is that restraint is being performed dangerously, in a punitive context, and improperly recorded.

Taken from The ICARS Report into the use of restraint in English schools

The implication of children experiencing punitive restraint flies in the face of a society that is trying to move away from corporal punishment. Such brazen abuse of the position of trust and power that schools are privileged to have is simply unacceptable. Children have died and been significantly traumatised by restraint. This is, quite simply, not a practice that should be occurring in this day and age.

We must also consider the fact that restrictive practice feeds into a self-perpetuating loop, in which the child is constantly being exposed and re-exposed to the trauma of restraint. Dysregulation creates challenges, which are approached with restraint, causing trauma that once again results in dysregulation. It is a self-fulfilling prophecy of sorts that is fueled by societies pervasive desire to assimilate children’s behaviour into an “acceptable” standard.

According to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the UK has made a commitment to create an inclusive education environment and protect disabled people from all forms of violence and abuse. I would challenge our governments commitment to this convention on the grounds that the punitive and improper use of restraint is a direct violation of both of these commitments.

According to a report made in 2018 for the UNCRPD, 75% of Autistic students, and 70% of those with a physical disability reported bullying in school, compared with 50% of those with no disability. How can we reduce interpersonal bullying among students peers in an environment where adults are actively harming children with restrictive practice? We have, in effect, normalised the mistreatment of disabled children on the grounds that disabled embodiment is a challenge to be intervened on rather than addressing issues with the wider environment that are creating traumatised and dysregulated children.

The Universal Human Rights Index specifically mentions concerns over the UK’s use of restraint on children, stating;

“The Committee is concerned that the State party is still using techniques of restraint that aim to inflict deliberate pain on children in young offender institutions, including to maintain good order and discipline“
UHRI (Accessed May 3rd, 2023)

This indicates that the UK government is failing in it’s duty to prevent torture and ill-treatment of it’s citizens. This raises further questions about the fact that this failure specifically pertains to disabled children, a notably marginalised group in our current society.

The truth of the matter is that children’s lives are being endangered, if not by the restraint itself, then quite possibly due to it’s correlation with the 9x increase in suicide risk seen amongst Autistic people (RCPSYCH, 2018) and the significant over-representation of Autistic people in demographics that have been victims of restraint.

Disabled people deserve compassion and equal access to the world. All of the time that we are holding the threat of dangerous restrictive practice over their heads, this has not been achieved. we need to create a world in which disabled people thrive, are not met with the threat of pain and violence. Restrictive practice needs to be seen for the toruturous practice that it is, and not normalised as a means of forcing the behaviour that institutions arbitrarily believe is acceptable.

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David Gray-Hammond 0 Comments

Apr 24 2023

Intergenerational trauma and the perpetuation of harm

“Mother is God in the eyes of a child”
William Makepeace Tackery

The above quote, whilst pertinent to this discussion, is only half of the picture. Adults control most aspects of a child’s life, and whether or not we realise it, we do this by being the people they depend upon to survive. I often wonder if those who abused me stopped to realise quite how severely they failed me in constructing a child for whom a feeling of safety was a rarity.

Children, like all of us, are socially constructed. The Self is an amalgam of the relationships and experiences afforded to us by the environment. This proves particularly problematic for children in abusive situations. Extensive and prolonged abuse creates a rocky foundation for Self-actualisation and scaffolding of one’s identity.

Much as the child who grows up seeing nothing but shadows does not realise there is a person who casts them, the child who is consistently and extensively mistreated does not view their abuse as out of the ordinary. This is how trauma passes from generation to generation. The normalisation of inflicted pain allows for it to be passed on.

There is a greater complexity to this matter than simply the way our parents and other family members treat us. Services and professionals who are meant to support us often compound the pain we are experiencing. When one is more concerned with the law than with ethics, you are almost definitely contributing to pain.

So, now we have a world where harm comes from all directions. This harm is so consistent and resilient to change that we do not realise its lack of acceptability. We are constructed into adults who believe that things should remain the same because “we turned out fine”.

We didn’t.

It’s not okay.

Our colonial society has taught us that normative violence is the pinnacle of love, and yet so few of us have actually known what real love feels like. We are hurt people who are hurting people. Not because we are fundamentally bad, but because the inflicting of pain in our world is taught to us as a second language.

We have become masters of our own torture.

It is necessary then to explore ways of moving away from this world of normative suffering. We must queer the expectations of human experience in order to build a new society where abuse of the Other is as unacceptable as any other crime against humanity.

We deserve a world where our fundamental human rights are not trampled daily, and more so, our children deserve the opportunity to construct themselves in love and not the crucible of pain.

David Gray-Hammond 1 Comments

Tag Archives: Trauma