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Oct 30 2023
What is unique about my experience as an AuDHD Schizophrenic person?

Over the years, I have spoken about my experience of psychosis and autism from the perspective of its uniqueness. However, over the last few years, I have come to accept that I am also ADHD, and I feel that addressing the particular intersections at play for AuDHD people experiencing psychosis is something that needs to be done. So, what is different for me as an an AuDHD person with a diagnosis of schizophrenia?

How does my schizophrenia present?

One of the features usually seen in Schizophrenic people is flat affect or lack of emotional response. For me, though, this does not happen. Part of the reason I went 14 years without a schizophrenia diagnosis is because I present as excitable and impulsive. I say absurd things, and quite well embody the description of a “mad scientist” trope.

Despite experiencing typical traits such as paranoid delusions, voice hearing, visual hallucinations, and periods of catatonia, I don’t experience many of what would be called the “negative symptoms”.

My speech is rarely disorganised unless I am deep into psychosis, I can communicate rationally, and even when I am terrified, lonely, and hopeless, I come across as exuberant and in need of constant stimulation. I also demonstrate a lot of insight into my diagnosis because as an AuDHD person, I have spent a long time learning about it in intricate detail.

The insight problem

One of the problems that psychiatrists have had with recognising my psychosis is the aforementioned insight I have. This can be understood as having an awareness that what you are experiencing isn’t real. For me, it was a complicated affair.

I knew a lot about psychotic conditions. I knew diagnostic criteria and contemporary research. I absorbed knowledge from therapists. I knew logically that I met the criteria for a schizophrenia spectrum diagnosis. Despite this, I still didn’t believe I was ill (more on that in a moment). This meant that psychiatrists were faced by a patient who seemed to simultaneously have and not have, insight.

Am I mentally ill?

This is perhaps one of my most controversial opinions, even amongst people who know me well. I do not view myself as having a mental illness, but I do agree that I am Schizophrenic. Much in the same way one can know they are Autistic or ADHD without viewing either of them as illness.

I believe that my schizophrenia is a form of acquired neurodivergence precipitated by a life of traumatic experiences. While I do not believe I am ill, I do take medication. I view this medication in the same way that one might view ADHD meds. They are a tool that makes life more manageable.

How common is schizophrenia in neurodivergent spaces? (Further reading)

Jutla et al (2021) mention that studies have indicated a prevalence of 12% in Autistic populations, with schizophrenia spectrum conditions being three to six times more likely amongst Autistic people.

Gerhand & Saville (2021) found schizophrenia and ADHD co-occurrence rates of up to 38.75%, vastly outpacing the general population.

For more information on my experiences and these intersections, read these articles

Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look
Autism and psychosis: The elephant in the room
How common is psychosis for Autistic people?
David Gray-Hammond 1 Comments
Aug 21 2023
Here are the reasons why CAMHS endangers Autistic children

If you believe that there are no issues with the way that Child and Adolescent Mental Health Services (CAMHS) treats UK Autistic children and young people, I would direct you to take a look at the ongoing petition that has over 200,000 signatures. That’s a fifth of a million people who have witnessed the failures and harms exacted on Autistic children and young people by a service that is meant to save them.

Something that I keep coming back to is that CAMHS as a service needs to do more than open it’s doors to our children. In it’s current state, CAMHS could do more harm than good. I very strongly believe that in order for CAMHS to be a fit place to support Autistic people, they need to change on a fundamental level. In light of this, here are some of the issues within the current system.

Safeguarding instead of mental health care

One of the most common stories that we hear surrounding CAMHS is families of Autistic children finding themselves being referred to safeguarding services within their local authority (LA). This has become a prevalent issue that can make accessing services feel hostile and dangerous. Given that parents of Autistic children are often disabled themselves, it seems pertinent to note the increased rate at which they experience Institutionalised Parent/Carer Blame (IPCB).

This highlights a significant issue with the move over to Single Point of Access (SPoA) referrals. There can be significant disparities from area to area in triage outcomes meaning that Autistic young people and their families often do not get access to the services they need.

Lack of knowledge around Autistic and neurodivergent experience

I have spoken at length about the impact that a lack of cultural competency among professionals can have. In particular I would highlight this article I co-authored with Tanya Adkin. It is impossible for professionals to be safe for Autistic young people while they are lacking essential knowledge that can only be found by engaging with the Autistic community.

Many of the professionals within CAMHS are working from outdated and stereotyped knowledge around what autism looks like and how best to support Autistic people. This lack of knowledge can and does endanger the health and wellbeing of our children and young people. It highlights a level of disdain for minority communities when they ask for professionals to learn from them and not from an outdated textbook.

Poor handling of children vulnerable to exploitation

This is a significant issue for Autistic young people. In particular I think of the case of Ben Nelson-Roux. This young person died a victim of exploitation due to multi-agency failure (as documented in the linked article). Had CAMHS had a better professional practice regarding neurodivergence and exploitation, his story may not have ended in tragedy.

We have to highlight here the power that CAMHS have in cases such as these. When CAMHS fail to take criminal exploitation seriously, it has knock on effects for the support they receive from all services involved. CAMHS as a whole needs to be significantly more skilled in this area due to it’s prevalence among Autistic demographics.

Defensive Practice

Defensive practice occurs most commonly when services are more concerned with metrics than people. Within CAMHS this often manifests in refusals for support, and labeling service users as “not engaging” when inappropriate approaches are used for neurodivergent young people.

This might also manifest as the overuse or inappropriate use of restrictive practices and deprivation of liberty. Again, this tends to arise from a need to meet targets and achieve certain metrics rather than meaningfully support young people.

Gate-keeping of services

This one is the whole reason we’re here, and fits in with the aforementioned defensive practice. When you don’t have the skills to support a neurodivergent person, you simply refuse them access to services. This gate keeping is deadly for some young people, and trust policies that allow for it to happen play a role in the disturbingly elevated suicidality rate for Autistic young people.

Autistic people experience a great deal of psychological distress in a world that is actively hostile towards them, and yet CAMHS fails to provide them with meaningful support. In many cases they fail to provide any support at all. If we want to see an improvement in the metrics that matter (for example, measure of quality of life), much of the current mental health system in the UK needs to be restructured. This will not be a quick campaign, but it will be effective.

Please support the ongoing campaign around CAMHS and Autistic young people by signing this petition and attending this protest.

David Gray-Hammond 0 Comments
Aug 5 2023
Yes, being Autistic does define me

Some years ago, I wrote a similar article for Neuroclastic. I thought perhaps now was the time to revisit the topic with several years more experience under my belt. Too many times I have been told not to let my “autism” define me, that I am something other than Autistic.

So, yes, being Autistic is a defining feature of who I am. This isn’t to say it is the only defining feature, but it is a core part of my identity. Of course, it is more than an identity to me. Much like my being ADHD and Schizophrenic, it defines my relationship to the universe surrounding me. I imagine my Autistic brain as a singular point, an event horizon within which all things become Autistic.

When I wake up, I do so Autistically. When I hold my son, I do so Autistically. When I breathe my last breath, I will do so Autistically. Autism is not a separate entity that inhabits me. I do not carry my autism as one might carry a brief case. My autism is the words I write, the thoughts I think. Autism is the way I feel. Autism is the way I love.

I am David, and so is my autism. If I were not Autistic I would not be David.

When others ask me not to be defined by “my autism”, they are asking me to cease existence. I have no existence outside of being Autistic because everything I do, I do as autism. As Autistic people, we are the point at which autism stops being an abstract concept and instead becomes a living, breathing human. My humanity is Autistic, and I will never know of non-Autistic humanity.

I can not tell you what it is like to be Autistic in a way that you can fathom unless you also are Autistic. Autism is all we know. We have never been anything other than Autstic. Even when I queer my neurology and seek a new way to exist, I do so as an Autistic person. My autism is exploration. It is expression of Self that can not, and will not, perform typicality.

So, do not ask me to define myself outside of autism. To do so is to ask me to define myself outside of my existence.

David Gray-Hammond 3 Comments
Aug 3 2023
Alexithymia and Autistic Burnout: Too tired to feel it

Autistic burnout is perpetually a hot topic (pun intended) within the Autistic community. From the earliest stages of our discovery journey through to the people who are seasoned veterans of the neurodiversity movement; burnout is an issue prevalent for any Autistic person currently in existence. Unfortunately, we often use observational techniques to try and quantify burnout. This may not be as helpful as some might think due to the dynamic and wide-ranging presentations of autism that exist within our community. We have to consider that not all burnout looks the same.

What is burnout?

“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 above mentioned definition is useful for a basic understanding of Autistic burnout, but there are nuances to this conversation that need to be addressed. Burnout is usually the result of being in a prolonged state of monotropic split. When such states of being happen, we are exceeding our cognitive resources and traumatising our brains. This traumatic overworking of our mind beyond what it is capable of doing is what creates a state of burnout. This state of burnout can then be understood as the brain shutting down demands around our functioning and engagement with demands in order to recover the cognitive resources it needs to carry on.

What happens when a person can’t feel themselves burning out?

Childhood trauma has been linked to body dissociation, and as such represents interoceptive issues in terms of feeling and identifying emotions (Schmitz et al, 2023). Given the very high rates of trauma throughout the Autistic lifespan, it is unsurprising that we often have issues with recognising and articulating our emotions, presenting issues for emotional regulation and the recognition that we are in burnout.

Because we often don’t recognise that we are experiencing Autistic burnout, we may not know that it is time to take our foot off the accelerator and recover those precious cognitive resources. We also have to consider at this point that half, if not more of Autistic people are ADHD (AuDHD as the community might say) (Leitner, 2014). For those of us who are ADHD, we may struggle to stop even if we know we are burnt out. The constant need for stimulus drives us to push onward and ignore any internal signals that we may receive from our body (Adkin & Gray-Hammond, 2023).

Autistic burnout for people in situations such as that described above may actually appear to be hyperactive or even manic as they struggle to regulate their emotions, and seek out a natural monotropic flow-state. Adkin (2023) refers to this as meerkat mode. This presents an issue for a society that has conceptualised burnout as looking similar to depression as the person experiencing this atypical presentation of burnout (Adkin & Gray-Hammond, 2023) will not necessarily appear depressed.

What are the risks associated with this kind of burnout?

“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?

Adkin & Gray-Hammond, 2023)

Misdiagnosis is anecdotally, a significant issue for Autistic people, in particular, Autistic people who were assigned female at birth and socialised as girls. These atypical forms of burnout often seem to be identified by mental health professionals as bipolar and personality disorders. The issue with this is that many Autistic people find these diagnoses are weaponised against them, and provide no meaningful route to recovery from the burnout that they are experiencing.

There is also a significant risk of an Autistic person being institutionalised in this state, with a significant portion of inpatients being Autistic. This is problematic for many reasons, but in particular I worry about the sheer number of abuse scandals that come out of inpatient units year on year. We also have to consider that inpatient settings are often traumatic in their own right due to the upset to routine and having a familiar space that Autistic people often appreciate.

Conclusion

There is no quick fix to the development of burnout in Autistic people. The driving factor behind burnout is that our world is not well designed for people with a monotropic attentions style. If we want to reduce rates of burnout, we have to decrease the likelihood of people experiencing extended periods of monotropic split. Such endeavours may sound simple on paper, but require a fundamental change to the way our world is structured.

Autistic burnout can have severe impacts that resonate throughout the person’s life for many years, and as such, we as a community need to know how to recognise and respond to our neurokin in distress.

References where link not available

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).

David Gray-Hammond 0 Comments
Jul 21 2023
How common is psychosis for Autistic people?

It’s no secret that the list of co-occurring traits and conditions that fall within the world of autism is exceptionally long. Autistic people tend to be multiply neurodivergent as well as having various health concerns. Despite this, there are certain aspects of Autistic experience that are not well discussed within our community. One of these things is psychosis.

Psychosis is more common in Autistic populations than people realise. Research suggests that almost 35% of Autistic people show traits of psychosis with up to 60% of Schizophrenia patients demonstrating clinically significant traits of autism. When we consider these statistics, it becomes clear that this is an issue that needs to be discussed more openly in our community. Unfortunately, due to the intense stigma surrounding psychosis, it often feels unsafe for people to have this conversation in public places.

Part of this issue is highlighted by the lack of mental health literacy regarding psychosis. One study found that 86% of participants could accurately identify traits of depression, as opposed to only 41.5% of participants accurately identifying traits of psychosis. To me, this is a result of media portrayals of psychosis. The term psychotic is often used as a synonym for dangerous and unstable. Schizophrenia is often mistakenly conflated with Dissociative Identity Disorder, and both demographics find themselves falling foul of movie directors who want to portray a dangerous person.

Within the Autistic community, there can be issues with getting people to speak up about lived experiences of psychosis. Fear of stigma and misunderstandings about this admittedly extreme manifestation of psychological distress can keep people silent, while others want to keep autism separate from perceived “mental illness”. This is problematic because it represents a significant risk of early mortality.

Autistic people are 9 times more likely to die by suicide with one of the primary causes of premature death in people who experience psychosis also being suicide. One might wonder of these findings are intrinsically related. The combined minority stress of being both Autistic and experiencing psychosis could represent a significant factor in the premature deaths of both demographics. Unfortunately, the research on this particular interplay is almost entirely non-existent. We need the discussion around autism and psychosis to open up in order to highlight contributing factors to these troubling statistics.

It isn’t surprising that psychosis is so prevalent in Autistic communities. Psychosis and trauma have an obvious correlation with population based studies showing a strong relationship between childhood trauma and abuse, and the emergence of psychosis. When we consider the effects of minority stress, whereby Autistic people suffer from the cumulative effects of systemic discrimination and oppression, we begin to see a world where in being Autistic almost becomes synonymous with being traumatised in some way.

Something else that is important to consider is the overlap between autism and ADHD. Research suggests that as many as 70% of Autistic people also present clinically significant traits of ADHD. one study found that 32% of adults with a history of psychosis reported ADHD traits starting in childhood with up to 47 % of those with childhood-onset Schizophrenia also presenting as ADHD. We also need to consider that both Autistic people and ADHD people have a significant likelihood of using substances. Substance use and psychosis have a significant enough relationship that there are specific NICE guidelines around this issues.

It is clear that psychosis is a significant issue in regard of the psychological wellbeing of Autistic people. In order to address these issues and create a world where Autistic people can thrive, we need to start talking about this. We also need to address lack of professional cultural competency in Autistic experience and presentation that may result in the connection between autism and psychosis not being identified in clinical and research settings.

Autistic people need good quality identification of psychosis and suitable support for their psychotic traits. Failure to do so is literally placing our lives on the line and failing a growing demographic within our population.

David Gray-Hammond 0 Comments
Jul 19 2023
Spectrum 10k and Autism Speaks are linked: here’s the things that link them

Autism Speaks are widely detested within the Autistic community. Since their inception, the horrendous “I am autism” commercial, and their ongoing attempts to eradicate autism and Autistic people; they have demonstrated themselves as an organisation that is not an ally to Autistic people. Spectrum 10k has revieved a similar reception from the Autistic community. It seems requesting the DNA of 10,000 Autistic people for “definitely not eugenics” reasons (but they can’t guarantee others wont use it for eugenics) has quite predictably upset far more than 10,000 Autistic people.

In a new and interesting development, activist and blogger Fierce Autie has made a connection that we all suspected might exist, but never had any tangible proof of. Now, thanks to the work of this activist, we may well have our connection. Link to their post below:

There is a Connection between Spectrum 10K and Autism Speaks
Fierce Autie’s blog post revealing the connection between S10k and Autism Speaks

There are two points to things to look at here, The Wellcome Trust and the Autism Genetic Resource Exchange (AGRE). Both have ties to Autism Speaks.

What is The Wellcome Trust?

In their own words:

“Wellcome improves health for everyone by funding research, leading policy and advocacy campaigns, and building global partnerships.

Collaborative research that involves a diverse range of people from different fields of interest is key to progress in health science – and to achieving our aim of fostering a healthier, happier, world. But many researchers feel they lack the time, finances, and creative environments they need to make breakthroughs.  That’s why we’re committed to funding ambitious global research projects that will transform our understanding of life, health, and wellbeing.”

The Wellcome Trust “what we do” page

For the purposes of Spectrum 10k, what you need to know is that The Wellcome Trust is the primary sponsor of this £3 million research project. Aside from comments on how that £3 million could have been better spent, this trust is deeply connected to S10k.

What is interesting as you will see within Fierce Autie’s blog post is that The Wellcome Trust received part of a $1.6 million grant from Autism Speaks to fund research into diagnosis and screening methods in moderate to low income countries. While we can not definitively say one way or another that money from Autism Speaks ended up in the Spectrum 10k banks account, what we can say is that The Wellcome Trust has direct links to Autism Speaks.

What is AGRE?

Again, in there own words:

“The Autism Genetic Resource Exchange (AGRE) is a gene bank housing data and biomaterials from over 2000 AGRE families, most of whom have two or more children on the autism spectrum.  Although for over a decade AGRE has collected most of these materials in the family home, we have now moved into the role of a Data Coordinating Center (DCC), receiving data and biomaterials primarily from outside researchers.  As a DCC, AGRE will continue to expand its resource by collaborating with researcher institutions who are working directly with families who have children on the autism spectrum.  We will further in our mission to accelerate the pace of autism research by enlarging our resource and continuing to make it available to autism researchers around the world”

Autism Speaks “AGRE for Families” page

The Health Research Authority (HRA) states the following about S10k:

“Additionally, researchers at the ARC have used pseudonymised genetic and questionnaire data collected as a part of the Autism Genetic Resource Exchange (AGRE), a database funded by Autism Speaks. As a part of Spectrum 10K, researchers plan to analyse summary genetic data from multiple datasets, which, subject to approvals, will also include data from AGRE.”

HRA “Spectrum 10k update” (May 2022)

AGRE represents an undeniable link to Autism Speaks and is a strong indicator that this project may share goals and views with them (in my opinon).

What does this mean?

These points come together to show us that once again we have been lied to. Fierce Autie’s blog post shows tweets from Spectrum 10k’s twitter account denying any connection to Autism Speaks, while they full well know they are connected. Yet again, the significance of our joint statement is brought to light. What’s more, the fact that we have been ultimately ignored by the HRA shows us that they are closer to Autism Speaks than they are to the Autistic community.

If you needed anymore reasons not to give them your DNA, here it is.

Read more on the Spectrum 10k page of this website.

David Gray-Hammond 0 Comments
Jul 3 2023
Is autism a disability?

When we think about autism, a number of things may (or may not come) to mind. The question of whether Autistic people are disabled is one that has been discussed for decades, with medical professionals largely being the ones to hold the power over how this answer is reached. Many may think of Autistic people as living tragic and unfulfilled lives, while others will talk about us having “superpowers” and advantages over others. The fact of the matter is that neither of these answers capture the full range of Autistic experience.

What is a disability?

There are two commonly cited models that define how we think about disability (there are more than two, but for the purposes of this article we will think about the two most common).

  1. The Medical Model of Disability:
    • In terms of disability theory, this model posits that disability arises from physiological issues. In other words, a problem with the body gives rise to a body that can not full participate in society.
    • With respect to autism, this means that Autistic people are viewed as having improper development of the brain that leads to deficits when compared to a non-Autistic cohort.
  2. The Social Model of Disability:
    • The social model positions disability as the result of systemic discrimination and lack of accessibility.
    • According to this model, Autistic people are not disabled by autism itself, given that autism is a socially constructed diagnostic category, but rather by a world that is designed for a very specific groups of individuals (for example, neurotypical people).
    • This means that disability can be accommodated through the use of accessibility features that make the environment better adapted to the Autistic person.

The problem with these two models of disability is that they do not entirely fit autism as a diagnostic category. While it is true that many Autistic people can feel less disabled with accommodations and changes to the environment, things such as an aversion to bright lights will still be an issue on sunny days. Regardless of this, it does not mean that a person has a disordered brain, hence neither model is a perfect fit.

Dynamic Disability

Autism itself doesn’t exist, what does exist is Autistic people. People rarely remain exactly the same over a period of time, and as such, neither does disability. For this reason, I refer to being Autistic as a dynamic disability. This means that a number of factors have to come together to define our strengths and struggles, and the role they play in our lives from day to day.

Some day’s we may feel very capable and achieve what we need to, other days might be more difficult and we may feel more like a disabled person.

The problem is that disability has been conceptualised in society as a fixed point, meaning that when we have those good days, it can lead to imposter syndrome and make us question our own experience of being Autistic.

Functioning Labels

You will likely have heard people talk about “high-functioning” and “low-functioning” autism. You may have heard of levels 1, 2, and 3 autism spectrum disorder. These terms supposedly describe the level of disability we experience, but again, are misleading. Functioning labels are intimately associated with one’s economic status. Those deemed low-functioning are classed as such because they are unlikely to ever be self-reliant, a key target of neoliberalism. Those deemed high-functioning are the ones whose quirks and outside-the-box thinking can be used by the economic system to drive profit and growth.

There are further issues with these labels for disability. Those Autistic people who are viewed as having higher support needs often live a life of limited autonomy with people around them assuming they can not contribute to their own lives, or that they would even want to. For those deemed as needing less support, it is often a life of struggle and traumatic self-reliance within a system not designed for them that can be expected.

But is autism actually a disabilty?

Simply put, yes. Regardless of what models of disability are used, or what amount of support a person might need, Autistic people experience disability related issues. This can come in the form of ableist discrimination, hate crime and & mate crime, improper accessibility to the environment, or issues that can not be accommodated for.

The problem is that disability has been situated as an inherently bad thing. The truth is that disability, much like autism, is neutral. It isn’t inherently good or bad, it is a fact of life. Some days we’ll feel better about it than others, some days will be harder than others. The idea that disability is a negative thing that needs to be removed from discourse around autism is ableism. We are positioning disability as something that harms our humanity.

In other words, avoiding the topic of disability inadvertently dehumanises disabled people, including Autistic people. This is why we need a more inclusive world, and it is why we need to normalise disabled embodiment from a young age.

David Gray-Hammond 1 Comments
Jul 1 2023
AuDHD and me: My nesting habits

When I first started this blog, I was writing largely about my own personal experiences. Back then, the only diagnoses I had (that would stick) were autism and a substance misuse disorder “in remission”. I wrote largely about my experiences as an Autistic addict in recovery, and not a lot else. Over time, I have discovered my ADHD and Schizophrenic identities, and my drug and alcohol addiction has remained “in remission”.

So, in order to have a bit of a throwback, I wanted to write a little about something I experience personally in the hopes of starting a conversation.Tanya Adkin and I have been writing about AuDHD (see more here, here, and here); I thought it might be nice to capture one of my quintessential AuDHD experiences.

Nesting

This is a word that is often thrown around in child care circles and animal husbandry, but in my Autistic and ADHD world, it has a slightly different meaning.

I have a safe space, and this space is equipped to meet all of my needs, sensory, sleep, work, nutritional. There are no limits to eat I keep within this safe space. To most, it appears that I live in a state of chaos, but in actual fact I have my needs fulfilled in this space, and what appears to be chaos is actually a completely curated space. I know where every item I need resides.

What does this look like in practice?

My nest starts with a sleeping space. A comfortable bed with plenty of pillows and a duvet that doesn’t make me too hot. I have a galaxy projector that projects colours and lasers onto the ceiling. I have various LED lights, many of which respond to the television and soundbar at the back of my desk.

Synchronised visuals and sound are essential sensory needs.

My oil diffuser runs in the evening, often filling my room with the smell of sweet peas or lavender, sometimes cedarwood. This allows me control of my olfactory sense.

On my bed can be found an assortment of snacks, books I am reading, my medication, and notebooks. I also have a tripod with a light ring next to my bed; the ability to take notes or record on a whim is essential for my impulsive mind. The multiple books mean that I can read and research in accordance with my attention hyperactivity, which often needs me to hop from book to book rather than focus on one at a time.

My computer sits off to either side of the TV, moved into place during the day to allow me to work. This is a space where I often crash and pass out rather than intentionally fall asleep, as such, nothing is removed from its spot before I sleep. My days are busy, and I need to know it won’t matter if I crash at the end of the day.

Finally, next to my bed is my sons cot. This is in a position where I can see, hear, and get to him easily when he is in the room with me.

The cherry on top is that all of my electronics are voice controlled, reducing the need to waste spoons on setting up this space at the end of each work day. I simply utter a voice command and lay back in sensory bliss.

What are the benefits of such a curated space?

This is my space. It allows me to have control over one small part of a traumatic and offensive world. While it required the privilege of working to set up (because money stupidly exists), it was worth every penny.

This means that for all the turmoil in the world, there is one place where I can be safe, one place that is mine, one place where my needs are entirely met. It is absolutely vital for my wellbeing. I enjoy the company of family and friends, but I need my curated solitude to keep me grounded.

Please consider supporting my work with a paid subscription to my Substack.

David Gray-Hammond 4 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 28 2023
Autism and alexithymia: The fallout for our mental health

Autism and alexithymia are two things you might see discussed in tandem quite regularly. In fact, Vaiouli and Panayiotou (2021) found a strong postive correlation beween Autistic experience and alexithymia with Kinnaird et al (2019) finding a prevalence rate of nearly 50% among Autistic people. Considering the very high rates of alexithymia among Autistic people, it is necessary to think about how this might contribute to issues in healthcare settings where professionals are largely trained in non-autistic expressions of emotion.

Alexithymia (according to the Merriam-Webster dictionary) is the inability to identify and express or describe one’s emotions. In other words, an alexithymic person experiences emotions in a way that means they struggle to attribute the internal sensations to descriptive language. It is subset of interoceptive differences which is discussed by Adkin (2023) in relation to their concept of “Meerkat Mode”.

This obviously presents issues with accessing support for our mental health. How can we explain our struggle if we can’t put it into words? Professionals often take us less seriously because if it was “that bad” we would be able to voice our suffering. Unfortunately it is not as simple as this. Even in my own experience, I often struggle to feel the difference between emotions like anxiety and excitement. Happiness and sadness also feel similar to me, and exhaustion is something I often can’t recognise until I am at the point of crisis.

This is a significant enough issue to face as an Autistic adult, but it happens to Autistic children as well. We regularly see Autistic people turned away from services such as CAMHS because they are in no way equipped to help us. Children are naturally less adept at describing emotions, especially the big emotions, and when you throw alexithymia in on top of that it leads to a breakdown in communication that can have life threatening consequences.

I have found myself at multiple points in my life being administered medication that I did not need because the ways I have learned to articulate my very abstract feeling emotions have been misunderstood (accidentally and willfully) by psychiatrists. We live in a world that pathologises our suffering, meaning that we can face horrific side effects to treatments that we might not have needed had professionals been culturally competent with regards to mental health in Autistic people. Tanya Adkin and I have written about the importance of competence previously (Gray-Hammond & Adkin, 2023).

I often ponder on the relationship between my early experiences of not being able to communicate my emotions effectively to professionals and my subsequent years of a drug and alcohol addiction. Honkalampi et al (2022) found a positive correlation between alexithymia and substance use, which in my opinion may indicate a mechanism behind the findings of Weir et al (2021) showing significantly higher rates of self-medicating with recreational drugs among Autistic adolescents and adults. In fact, one of the primary drivers behind my drug use was having control over my emotional experience. I would hazard a guess that drug use is so common in the Autistic community because it allows us to feel a familiar and more easily described feeling.

It is clear that alexithymia is a significant issue for not just Autistic people, but also for professionals working in healthcare and wellbeing practices. The links between alexithymia, poor access to mental health support, and risk taking behaviour are clear. It’s necessary for professionals working with Autistic people to find ways to help Autistic people articulate their emotions rather than to just ignore us or belittle our struggles.

Our lives depend on it.

References

Adkin, T. (2023). What is meerkat mode and how does it relate to AuDHD? https://emergentdivergence.com/2023/06/06/what-is-meerkat-mode-and-how-does-it-relate-to-audhd/

Gray-Hammond, D., & Adkin, T. (2023). Creating Autistic Suffering: Autistic safety and neurodivergence competency. https://emergentdivergence.com/2023/04/11/creating-autistic-suffering-autistic-safety-and-neurodivergence-competency/

Honkalampi, K., Jokela, M., Lehto, S. M., Kivimäki, M., & Virtanen, M. (2022). Association between alexithymia and substance use: A systematic review and meta‐analysis. Scandinavian Journal of Psychology, 63(5), 427-438.

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

Vaiouli, P., & Panayiotou, G. (2021). Alexithymia and autistic traits: associations with social and emotional challenges among college students. Frontiers in Neuroscience, 15, 733775.

Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry, 8(8), 673-685.

David Gray-Hammond 6 Comments
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