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Jun 6 2023
What is meerkat mode and how does it relate to AuDHD?

This article was authored by Tanya Adkin

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

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

Adkin & Gray-Hammond (2023)

Recently David and myself have written a few articles on atypical burnout (Adkin & Gray-Hammond, 2023) and the burnout to psychosis cycle (Adkin & Gray-Hammond, 2023). In those articles I’ve mentioned something that I refer to as “meerkat mode”. People seem to relate to the concept as discussed in the articles, so I thought it may be wise to dedicate a whole article to what I mean by this concept.

Firstly, I want to explain that I am a very visual thinker, who happens to be plagued with good ol’ imposter syndrome. Said imposter syndrome tells me I should have thought of a more academic terminology, but that’s not the way my brain works. Truthfully, I can’t think of a much better visual representation for what i’m about to describe.

Meerkat modes presents an answer to the diverse forms of burnout I have witnessed through my work with a wide range of neurodivergent people. David agrees with the assessment as a fellow “autism professional”. I don’t set out to reinvent the wheel or change entire paradigms, this is and was a way for me to simply explain a phenomenon that is more common than people realise. A phenomenon that I see described on an almost daily basis as hypervigilance or a trauma response, but in my experience is more than that.

What is meerkat mode?

  • Hypervigilance
    • Hypervigilance is not a diagnosis. Rather, it is the brains biological adaptation to ongoing stress and trauma, which we know that Autistic people experience at a higher rate than non-Autistic people (Gray-Hammond & Adkin, 2023). It is the way it maintains a state of high alert on the look out for threat. It’s a description of a state of being that is commonly seen in diagnostic criteria for things such as PTSD, anxiety disorders, schizophrenia spectrum disorders, psychosis and psychotic phenomena, some personality disorders, and much more.
    • Interestingly, a lot of these mentioned diagnoses are seen to be co-occurring with Autistic experience.
  • Seeking a monotropic flow-state (Hyperfocus)
    • Flow-state in terms of monotropism refers to the tendency for monotropic brains to fall into deep attention tunnels that are intrinsically motivating. It has been reported by Autistic people that entering this flow-state is beneficial to monotropic peoples mental wellbeing.
    • Flow-state and hyperfocus are often used interchangeably and there is a general acceptance of it’s occurrence but no solid definition.
    • Anecdotally, when we see this as a person seeking to be in a constant flow-state, it can often indicate dysregulation or adaptations needed within the environment. Sometimes (when dysregulated) this flow state can be quite negative and turn into a monotropic spiral.
    • Because of hypervigilance people experiencing “meerkat mode” have a significantly more difficult time accessing flow-state.
    • Hyperfocus/flow-state is reported in autism, ADHD, and schizophrenia (Ashinoff & Abu-Akel, 2021).

“Refers to a state of being engrossed in a task that is intrinsically motivating during which task performance improves, there is a tendency to shut out external environmental stimuli, and internal signals”

Ashinoff & Abu-Akel (2021)
  • Increased Sensory Dysregulation
    • Interoception
      • Interoceptive differences do not only occur in Autistic people. They are thought to be largely caused by early-life stress (Löffler et al, 2018) and trauma (Schulz, Schultchen & Vögele, 2021).
      • Interestingly, interoceptive differences are seen to occur in ADHD people, Schizophrenic people, eating disorders, anxiety disorders, emotionally unstable personality disorder (EUPD), and more.
      • I am not stating that Autistic interoceptive differences are created by trauma, rather that the generic understanding of interoceptive differences is attributed to stress and trauma.
    • Alexithymia
      • Alexithymia refers to the difficulty or inability to sense or decipher one’s own emotions or the emotions of others. It could be described as a subcategory of interoceptive differences.
      • The general view is that alexithymia is created or arises from extreme stress or trauma, some research does suggest it could have biological or developmental links (Thompson, 2009).
      • Again, alexithymia occurs in more or less every diagnostic category I have pointed out previously, including ADHD, or any situations that create stress or trauma.
    • Link between interocetion (alexithymia), vestibular, and proprioception
      • Those that are displaying “meerkat mode” (in my experience) will generally seek proprioceptive and vestibular input, e.g. bouncing on a trampoline, rough play, being upside down. They may be “clumsy” or meet criteria for developmental coordination disorder (dyspraxia).
      • Interestingly, the above sensory profile is highlighted in guidance to be of clinical significance with a PDA profile of autism (PDA Society).
      • Generic advice for someone experiencing “meerkat mode” would be to increase proprioceptive and vestibular input in order to regulate interoception.
      • Interoception takes the leading role in emotional regulation.

“Interoception works the vestibular and proprioceptive senses to determine how an individual perceives their own body. Well-modulated interoception helps the individual detect proprioceptive and vestibular sensation normally.”

sensoryhealth.org
  • May be unable to stop or rest
    • As David and I have discussed previously in our articles on atypical burnout and the burnout to psychosis cycle those that appear to be meerkatting may not be in a position to stop and recover.
    • This could be due to co-occuring ADHD (AuDHD) or life demands such as parenting or work, maybe interoceptive differences mean that the person does not “feel exhausted”. They could be in a monotropic spiral of flow-state which is shutting out everything else.

Concluding thoughts

There are infinite possible interactions between an AuDHD person and their environment. And this is why I think we often struggle to define our experiences through something that can be outwardly observed and measured.

This is just one explanation for something that I have witnessed in a sea of possibilities.

References

Adkin, T. & Gray-Hammond, D. (2023) Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look. emergentdivergence.com

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

Ashinoff, B. K., & Abu-Akel, A. (2021). Hyperfocus: The forgotten frontier of attention. Psychological Research, 85(1), 1-19.

Gray-Hammond, D. & Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. emergentdivergence.com

Löffler, A., Foell, J., & Bekrater-Bodmann, R. (2018). Interoception and its interaction with self, other, and emotion processing: implications for the understanding of psychosocial deficits in borderline personality disorder. Current Psychiatry Reports, 20, 1-9.

Schulz, A., Schultchen, D., & Vögele, C. (2021). Interoception, stress, and physical symptoms in stress-associated diseases. European Journal of Health Psychology.

Thompson, J. (2009). Emotionally dumb: An overview of alexithymia.

Tanya Adkin 0 Comments
Jun 5 2023
Creating Autistic Suffering: The AuDHD Burnout to Psychosis Cycle- A deeper look

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

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

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

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

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

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

Monotropic Split

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

Atypical Burnout

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

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

Raymaker et al (2020)

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

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

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

Meerkatting

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

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

Monotropic Spiral

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

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

Psychotic Phenomena

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

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

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

Concluding thoughts

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

Perhaps then we should stop thinking in terms of:

Autistic person + Environment = Outcome

instead considering:

Monotropic person + Environment = Outcome

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

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

References

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

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

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

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

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

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

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

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

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

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

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

Tanya Adkin 0 Comments
Jun 4 2023
What is unique about being Schizophrenic and Autistic?

I have previously written about the significant intersection between autism and schizophrenia and the relationship with psychosis in a broad sense. It is a widely undiscussed area despite the fact that many people experience it. I have also discussed what it is like to be schizophrenic; recently people have been asking me how my psychosis presents.

For this reason, I thought it would be good to discuss some of what I have found unique about my relationship with Schizophrenic experiences and my overall relationship with this particular aspect of my neurodivergence.

Hallucinations

I experience auditory, visual, olfactory, and tactile hallucinations. What does this mean?

  • Auditory Hallucinations
    • These are sounds and voices that others do not hear. I can hear voices speaking to me and discussing my actions. A typical experience might be hearing voices coming from televisions and radios, but I also hear voices that sound like someone speaking next to me.
  • Visual Hallucinations
    • These include perceptions of visual things that other can not see. Some that can occur for me are moving or breathing walls, people (such as a woman in a black dress), and insects.
  • Olfactory Hallucinations
    • This means that I smell things that are not in existence in the environment. I can often smell tobacco being smoked where no one is smoking, or flowers that are not present.
  • Tactile Hallucinations
    • This typically manifests as the feeling of things crawling over my skin.

Delusions

My most common type of delusion is persecutory delusions, although I have experienced grandiose delusions as well.

  • Persecutory Delusions
    • These are delusions where we believe that someone or something intends to do us harm. I have believed that I am trapped in a computer simulation by someone trying to delete me, that microchips have been implanted in me that are broadcasting my thoughts, that my food is being poisoned, and that my loved ones have been replaced by doppelgangers.
  • Grandiose Delusions
    • This is typically a belief that there is something uniquely special and important about you. For me, this manifested as a persistent and Obsessive belief that I had unified quantum mechanics with the physics of gravity and relativity.

Mood

I experience depression and hypomania. Depressive episodes are crippling and may see me sleeping for days on end. Hypomania episodes make me feel hyperactive and take risks. One particular example of my hypomania resulted in me having to be locked in the house to stop me from leaving the country.

What makes my experience unique?

Psychosis is incredibly difficult to camouflage, but due to being Autistic I was already adept at projecting an acceptable version of myself (I highly recommend this article by Tanya Adkin on masking). Professionals largely do seem believe it is possible to mask psychosis, but I managed it.

I also have a great deal of insight that is typically not seen in schizophrenia. Most of the time, I am aware that I am hallucinating or having paranoid or delusional thoughts. It is only in full-blown episodes that I lose that insight and become consumed by the neurogenerated reality I am experiencing.

This presented an issue in receiving correct diagnosis. Many professionals refused to accept that I was experiencing psychosis and would often gaslight me into questioning my own experiences.

“Although schizophrenia can occur at any age, the average age of onset tends to be in the late teens to the early 20s for men, and the late 20s to early 30s for women. It is uncommon for schizophrenia to be diagnosed in a person younger than 12 or older than 40”

National Alliance on Mental Illness (NAMI)

Despite my recognised onset of psychosis being at the age of 18, it took me until the age of 32 to be formally diagnosed. The full name of the diagnosis is too long to remember, but it is effectively the schizophrenia equivalent of PDD-NOS. One psychiatrist commented that he wished a diagnosis of “atypical Schizophrenia” existed for people such as myself.

I would also note that I was experiencing depressive traits and hallucinatory phenomena from a much younger age, but it was largely ignored and overlooked by professionals. I often wonder if this was the build-up to what emerged in my late teens.

We need professionals to recognise these unique experiences. Had my psychosis been addressed earlier, I may not have turned to drugs and alcohol for relief. Much of my suffering could have been avoided.

I am happy with my life now, but still have some anger for the experiences I have had at the hands of professionals. We need people to speak out, and inspire a paradigm shift in the recognition and support of Autistic and psychotic people.

For more writing on my experiences of psychosis and madness, please consider purchasing a subscription to my substack.

David Gray-Hammond 4 Comments
Jun 3 2023
Autism and psychosis: The elephant in the room

I am Autistic and ADHD, some might affectionately refer to me as AuDHD. However, to think that these two diagnostic categories tell the whole story of my neurodivergence is to miss out on a significant part of my experience of our shared reality.

The truth is, I don’t always experience our shared reality. My name is David, and I’m Schizophrenic.

Psychosis rarely makes it into the discussions of “mental health awareness”. In fact, most people view those like me as dangerous and incapable of taking part in the world. Many assume that people like me spend their lives in psychiatric facilities, taking part in unstimulating arts and crafts and therapy sessions. Some may think of us as criminally insane, restrained in a room, while having medication forcibly given to us.

While not totally inaccurate, I have spent time as an inpatient, and a lot of us are regular people with regular lives.

You might be asking yourself where my being Autistic and ADHD fits into this all. In this study they found that nearly 35% of formally identified Autistic people showed indications of psychosis, with up to 60% of Schizophrenic people showing Autistic traits. Statistics like this indicate that psychosis and Schizophrenia are an important point of discussion that is in no way being discussed.

To an extent, I understand why. The neurodiversity movement has done a lot of work to position itself away from things traditionally viewed as “mental illness”. It does, however, demonstrate the ableism and saneism that is present in the Autslistic community.

The fact that I experience madness is a part of my neurodivergence. Schizophrenia is neurodivergence, just like autism and ADHD. Like ADHD, many of us take medication to help us perform to the demands of neuronormative society. Just because psychosis and schizophrenia are viewed as mental illness, does not mean that it is mental illness.

The Autistic and otherwise neurodivergent community could do a lot to support people like me. By embracing us as neurokin rather than treating us as an undiscussed intersection, we become empowered to break free of the chains of the pathology paradigm. Is that not what we all wish for?

I know that out there, many people like me keep themselves contained and quiet. We need to dismantle the stigma and saneism in our community so that people can be openly psychotic without fear of being rejected, criminalised, or even killed. More often than not, the biggest risk we present is to ourselves.

I love the Autistic community. The things I have learned during my time among you all reach further than merely affirming neurodiversity. I have come to understand that things such as atypical burnout are inextricably linked to the development of my psychotic experiences. This is the good that open communication can affect those of us for whom reality is malleable.

The time has come for people to stand true to who they are. It’s time for psychotic people to open up the conversation and support each other into a liberated future. All I ask is that my Autistic comrades give us the space and compassion to do so.

To read more about my experiences of madness and schizophrenia, please consider purchasing a subscription to my substack

David Gray-Hammond 1 Comments
Jun 2 2023
The relationship between queerness and being Autistic

“Queer is a term used by those wanting to reject specific labels of romantic orientation, sexual orientation and/or gender identity. It can also be a way of rejecting the perceived norms of the LGBT community (racism, sizeism, ableism etc). Although some LGBT people view the word as a slur, it was reclaimed in the late 80s by the queer community who have embraced it.”

stonewall.org.uk

I am queer, and I am also Autistic. In fact, it would be more accurate to say that I’m queer and multiply neurodivergent; I am not just Autistic, but also ADHD and Schizophrenic. Some might wrongly assume I should keep my queerness out of discussions of neurodivergence, but the two are inextricably linked.

As an Autistic person, I find myself constantly questioning the status quo. Even before the discovery of my neurodivergence, the concept of normality felt painful and alien to me. I used to believe that normality (perhaps more accurately, normativity) consisted of arbitrary rules, but I realise now they are not arbitrary at all.

Normativity is designed to oppress those who do not comfortably fit into it. For Autistic and otherwise neurodivergent people, we struggle to fit into the system because of our neurology. For queer people, we do not fit into the capitalist fairy tale of binary gender and monogamy within the confines of heterosexuality. This is neuronormativty and heteronormativity respectively.

The relationship between the two lies in my abject rejection of normativity. I have neuroqueered myself into a fluid and radical identity that stands opposed to what colonial society wants me to be. This is more than just “acting Autistic”. I embrace queerness in all aspects of my life, sexuality included.

Queerness in this respect is not solely about who you are or who you sleep with. For me, my queerness is an act of defiance, a refusal to be contained. Being queer leaves me the space to be whomever I wish, to explore avenues that society would rather cordon off from me.

If I were not Autistic, perhaps if my particular mix of neurodivergence were different, I would not have this drive to liberate myself from the cult of normality. We were sold the lie of essentialist identities, and my bodymind is painfully aware of its dishonesty. I am queer because the world does not want me to be queer.

To be contained into fixed and sanctioned identities is to entangle the Self in the chains of normativity. Queerness, then, is the angle grinder cutting through those chains. I am openly queer so that it may be safer for others to be queer. My pride is not egotistical, but a refusal to be ashamed of any part of my being.

I reject normativity in all kinds, including the identity politics of my perceived peer groups. None of this would happen if I were not Autistic.

David Gray-Hammond 0 Comments
Jun 2 2023
Autistic Parenting: Parenthood in it’s infancy

This article was co-authored by David Gray-Hammond and Katie Munday

When Katie and I set out to write today, we knew we wanted to do something new. While there has been a great deal of discussion around parenting school-age Autistic children, Katie and I are both parents to younger children and feel that there is somewhat of a void in discussions around the early years or parenting an infant.

We do not position ourselves as experts, this is more of a journey into our own discoveries, the experiences we have, and sharing in the joys and struggles that so many Autistic people experience as they grow into parenthood.

“Nothing quite prepares you for parenthood, no matter how organised you are and how much the baby was planned.

The late nights, the interrupted sleep, the constant feeding and nappy changing, and the emotions of it all!”

Munday (2022)

Being Autistic and a parent is a unique and wonderful challenge. It represents a leap into unknown territory, and requires us to ask the question of how we would like to have been parented.

What is it like to parent an infant as an Autistic person?

At times being a parent can feel very surreal. There can be a disconnect between the reality of your child’s existence, and the realisation that you have created that child. Many people speak of having an instant bond with their child, but for many of us it can take time to feel that deeper connection. This doesn’t make us bad parents, it makes us human beings who are processing the reality that we are personally responsible for another living being.

Whether you are a biological parent, or a foster or adoptive parent/carer, it can take time to process the reality of parenthood; you now have another human being who looks to you for survival, protection, and love. This love does not always come easily. Especially after a traumatic birth, for parents living with post-natal depression (it doesn’t only affect those who give birth), and those who have had traumatic childhoods; which Autistic people experience at a significantly higher rate than non-Autistic people (Gray-Hammond & Adkin, 2021).

Besides the somewhat philosophical musings of love for your child, there are some technical challenges to being an Autistic parent to an infant.

“He’s just started the ‘terrible twos’ stage – awful name but you get what I mean – and he finds it hard when Daddy leaves for work. So, he throws himself down and makes these noises which prod and poke at my very soul.”

Munday (2022)

Sensory challenges are everywhere as an Autistic parent, there are noises, smells, and for some reason babies are permanently sticky. Where the hell does the stickiness come from? David in particular struggles with sticky things, it is a sensory challenge that turns his stomach. For David, stickiness can remain for days causing him to pick at his skin and repeatedly wash his hands. This is unsurprising given the intersection of OCD with Autistic experience (which David and Katie both share, more on this intersection here and here).

Nappy changes can also be quite upsetting for Autistic parents, issues around cleanliness, olfactory senses, and children who perhaps try to escape during nappy changes can result in a very overwhelming experience. The nappy changing experience can be increasingly exhausting, especially as infants reach an age where they can begin to move around. It is easy to be hard on yourself for being overwhelmed, particularly in a context where you have to “be the calm”.

On the topic of “being the calm”, it can be frustrating trying to demonstrate emotional regulation when it is not something you excel at yourself. Autistic parenting can leave you constantly dysregulated meaning that often you have to mask your struggles for the sake of your children. While neurotypical parents may also deal with this, we have to acknowledge the monotropic split (Adkin, 2022) that can arise from doing this constantly as an Autistic person.

There are a lot of aspects of parenting an infant we could discuss, but in order to give them the space they deserve, we will address them each in separate installments of this series. In the mean time, just be safe in the knowledge that Autistic parents everywhere have different strengths and struggles, and like many things, there is no one-size-fits-all approach to being a parent/carer.

David Gray-Hammond 0 Comments
May 29 2023
Creating Autistic Suffering: CAMHS kills kids

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

This article includes exerts from interviews conducted by David, all interviewee’s gave their permission for quotes to be used.

Tanya has demand avoided weighing in on this topic for quite some time. Not for no good reason. Tanya has felt torn with this topic and the potential outcome of the petition that has been circulating and included in David’s previous articles on CAMHS. This petition has been signed by nearly 190,000 people as we type this. The number is climbing. The petition shines a light on the routine refusal of services such as CAMHS to provide mental health support for Autistic children and young people.

Neither of us have ever been quiet about our opinions on statutory services for Autistic young people, Tanya especially is a firm proponent of the phrase “CAMHS kills kids”. This might sound extreme, but in our lines of work we have seen their lack of competence have life altering/ending consequences.

If this petition succeeds to its fullest extent, and the doors are flung open as tens of thousands of Autistic children across the country flood into CAMHS departments (unlikely to happen quite like this, but bare with us), what awaits us on the other side of those shiny doors? Doors that Autistic people very rarely get to see the other side of.

You’d be forgiven for assuming “support” might be found there. That’s what CAMHS is there for, right? Our biggest fear is that we are just waiting to be disappointed at best, and at worst, the mental health of tens of thousands of Autistic young people is going to get significantly worse.

What might CAMHS offer?

“Services are still being designed without the involvement of the people using them. There is chronic under-funding and under-staffing which is undoubtedly having a huge negative impact on outcomes.”

Charlotte, CAMHS Professional

CAMHS may offer:

  1. Medication–
    • This has it’s place, but 9 times out of 10, in our experience, Autistic people present with mental health issues (especially young people that have been subject to the trauma that comes from an education system not fit for purpose, and woefully underfunded) due to unmet needs. There is no amount of medication that can fill the space where education falls short. It’s akin to sticking a plaster on a stab wound.
  2. Talking Therapy–
    • If an Autistic young person has experienced enough trauma to feel they need to access mental health services, it’s highly likely that they will be alexithymic. The first thing to suffer when a child is traumatised is their interoception. If they can not express how they feel, talking therapies (usually based in CBT) are likely to reinforce the medical model view that they are broken and can not be fixed. Furthermore, they’ll mask through it. Masking is a leading predictor of suicidality in Autistic people (Higgins et al, 2021; Adkin, 2023).
    • Neuronormativity is another factor to consider, if the person who is helping the child or young person comes from a neuronormative perspective that “neurotypical” is the gold standard of being that everyone should strive for, then you’ve given a young person something else to fail at (Gray-Hammond and Adkin, 2022).
  3. Parenting Courses–
    • You can’t parent away Autistic trauma (Gray-Hammond and Adkin, 2021) or burnout, or really any other mental health concern for that matter. Not only is it extremely patronising, it also risks parents being taught harmful, outdated methods based on the lack of competence of those designing and delivering said courses. This leads nicely onto our last offering on the CAMHS shitlist.
  4. Parent Blame–
    • Institutionalised Parent/Carer Blame (IPCB) is a real phenomenon (Clements and Aiello, 2021), and the NHS is an institution. The thing about IPCB is that it covers the lack of professional competence and protects their egos by shifting the onus of responsibility onto the parent and subsequently social care. It’s also a fantastic cost-saving tool. Unfortunately, it often has devastating consequences. It’s not only the young person not getting their needs met, it’s the trauma of parents believing they are responsible for their young person’s mental health difficulties. The trauma accrued from social care involvement. The worst but not uncommon occurrence of an accusation of fabricated and induced illness (Gray-Hammond and Adkin, 2022).

” I worry about staff knowledge levels regarding up-to-date autism practice and the nature of the interventions offered”

Jenny, Parent of child under CAMHS

What do Autistic children and young people with mental health concerns actually need?

“Practitioners need to be better equipped to recognise the differences between treatable mental health difficulties, and challenges within the context of autism”

Charlotte, CAMHS Professional

They need:

  1. Sensory Integration trained Occupational Therapists
    • This is absolutely essential to understand the sensory profile of an Autistic person. It allows us to make provision and adjust the environments they exist in accordingly. This in turn reduces the impact of sensory trauma (Fulton et al, 2020). This also affords the young person and the people around them understanding of their needs. It reduces anxiety and builds self-advocacy, while simultaneously helping develop coping strategies.
    • There’s one problem with this, there are not enough qualified OT’s. There is a workforce crisis across social care and the NHS (Brexit doesn’t seem like such a bright idea after all…). This is just for regular OT’s. To become a sensory integration OT you need approximately two years extra post-graduate study (Can’t see the government finding a magic OT tree at the bottom of the garden any time soon).
  2. Mental Health professionals that will call out the school system for the trauma they cause
    • Unfortunately, it’s not considered “professional” to call out other statutory services. Health professionals are often told that they can not comment on education because it is outside of their remit. Tanya would argue that safeguarding is everyone’s remit (David agrees). We would remind professionals that physical and mental health have legal parity (Baker and Gheera, 2020). If a teacher willfully broke a child’s leg, it would be on national news. Yet, routinely restraining an Autistic child into a traumatic environment is the norm (Gray-Hammond, 2023). Or even worse, threatening parents with either social care (safeguarding) or financial penalties for non-attendance.
  3. Competence
    • As previously mentioned, we need professionals that fully understand Autistic experience and culture. Everything from masking to monotropism, burnout to community-connectedness (Botha, 2020). Without competence, you can’t have safety because the person will not be aware of their own neuronormative viewpoints. The cycle will continue.

“I remember one clinician telling me, ‘there’s not much you can do with them’ as in therapy for autistic children.”

Jane, former CAMHS Professional

Where does this leave us?

We are pretty much stuck between a rock and a hard place. On the one hand, it’s a question of supply and demand. If we demand, theoretically they should supply. In reality, how many of our children do we need to throw under the CAMHS bus until they get the message? This doesn’t stop at a petition. As any SEND parent will already be aware, this is just one rung on a never ending ladder of fighting, advocating, and holding professionals, services, and our government to account. So please sign this petition and help us place our Autistic feet on the proverbial ladder.

References

Adkin, T (2023) Mask on, Mask Off: How the common understanding of Autistic masking is creating another mask. Emergent Divergence.

Baker, C. and Gheera, M. (2020) Mental health: Achieving ‘parity of esteem’. HM UK Government.

Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).

Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.

Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.

Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory trauma: Autism, sensory difference and the daily experience of fear. Autism Wellbeing CIC.

Gray-Hammond, D. (2023) Restraint and seclusion in England’s schools. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Neuronormativity in mental health treatment. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2023) Creating Autistic Suffering: Autistic safety and neurodivergence competency. Emergent Divergence.

Higgins, J. M., Arnold, S. R., Weise, J., Pellicano, E., & Trollor, J. N. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating# AutisticBurnout. Autism, 25(8), 2356-2369.

David Gray-Hammond 2 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 22 2023
PDA: Are we repeating the same mistakes we’ve already made?

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

If a tree falls in the woods and no one is there to hear it, does it still make a noise?

While a lot of PDA literature, including the recent practice guidance, does indeed state that non-speakers and intellectually disabled Autistic people can have a PDA profile, are we ignoring the elephant in the room?

What does PDA look like in non-speakers and intellectually disabled Autistic people?

Nobody seems to know.

“Those with severe IDD were excluded from some of the analyses regarding the rate of PDA in subgroups, given that it is difficult to envisage the whole PDA phenotype developing in an individual with severe or profound general cognitive dysfunction.”

Gillberg et al (2015)

It seems as if no one has even asked them about their experiences.

“For this study, only data from parents who reported their child to have mild or no learning difficulties/intellectual disability were included in the analysis.”

O’Nions et al (2014)

The above quote was taken from a paper called “Development of the ‘Extreme Demand Avoidance Questionnaire’(EDA‐Q): preliminary observations on a trait measure for Pathological Demand Avoidance.” It literally sought to develop, and did develop, a tool for the identification of extreme demand avoidance/PDA. While guidance does say that the EDA-Q is not a diagnostic tool, they also say the following:

“Nevertheless the EDA-Q is useful in assessments”

PDA Society Practice Guidance

Much in the way that historical research around autism has looked at young, white boys, creating bias in the diagnostic criteria (which is responsible for an unfathomable amount of harm); we are creating diagnostic (but not) tools for PDA that exclude intellectually disabled Autistic people. No wonder we aren’t finding them!

There seems to be some very familiar narratives appearing around PDA.

There is a suggestion of a spectrum of which PDA only exists in those with average or above average IQ’s. This is disturbingly reminiscent of Asperger’s and the sub-categories of autism that were consolidated in the DSM 5. The era in which PDA was conceived was the era of the spectrum. It seems that we left PDA behind.

One of the reasons these sub-categories were consolidated is because of the lack of diagnostic consistency, much like we see within the PDA narrative now. We have clinicians refusing to accept it’s existence, additions and adaptations to criteria, the not so subtle suggestion that PDA can only exist within a certain type of cognitive function. Those that think it is not exclusive to Autistic experience, and those that think it is a trauma-response or highly sensitive neuroception. There is no agreement as to what PDA is. As such, it’s no wonder that so many clinicians are refusing to accept it’s existence.

Another one of the reasons for the consolidation was the tendency to dismiss the needs and struggles of those that were labelled “aspergers” or “high functioning”, versus the ignorance of autonomy in those deemed “low functioning” and the attribution of any co-occurrences to “severe autism”. Is the reason we are not identifying intellectually disabled PDA’ers because those driving the narrative are attributing any additional needs to “severe autism”? This would also explain the exclusion of non-speakers. They have not moved on from the spectrum era.

We also need to consider “Aspie supremacy” where by a group of people considered “aspergers” felt that they were superior and separate to “general Autistics”. We are seeing the same thing arise in corners of the PDA community and we believe that the exclusion of intellectual disability from the narrative is contributing to this.

There is literal and blatant exclusion of non-speakers. This is done by leaning heavily on speech and language, and “high verbal ability” in the suggested identification of the PDA profile. Again, have we learned nothing? The long held assumption, that non-speaking meant non-thinking and non-feeling, seems ever prevalent in narratives around who does or does not fit the criteria for PDA.

We are not saying that PDA does not exist. The authors of this are either PDA or have PDA children themselves. What we are concerned about is the proliferation of harmful and exclusionary narratives, and the way they create division from the community. The things that are often most helpful in understanding one’s neurodivergence is a consistent and inclusive idea of what that means. We have often discussed the trauma that Autistic people experience, could the narratives around PDA be contributing to that?

If the professionals who are trying to control the positioning around what is PDA can not even agree without arbitrarily excluding people, maybe they should back away. Where is the voice of PDA individuals in the development of research and guidance? The Autistic community as a whole tends to do far better at defining and explaining Autistic experience than any observational model, we can see this in the leaps we have taken in research. It’s time that PDA individuals were offered the same privilege.

Learn from past mistakes, in an effort to not repeat them. So in answer to the question “if a tree falls in the woods and nobody is there to hear it, does it make a sound?” YES. It does. Does PDA exist within intellectually disabled and non-speaking communities? Just because researchers haven’t decided that it’s worth looking at doesn’t mean the answer is no.

David Gray-Hammond 0 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
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