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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
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 20 2023
Failure by the NHS to adhere to the United Nations Convention on the Rights of Persons with Disabilities

This article was written by an anonymous guest author

This post references:

UN Special Rapporteur on Torture

UN Convention on the Rights of People with Disabilities

UK Mental Health Act (1983)

We are at a pivotal crossroads on our path towards a fairer society, faced with a monumental issue that, while hidden, carries unsettling implications.

The UK’s National Health Service (NHS) has repeatedly been implicated in serious violations of human rights, as outlined by the United Nations conventions on the rights of disabled persons. This is not merely an affront to international law; it’s a harsh, terrifying reflection of the suffering inflicted on people with disabilities under the pretext of health care provision.

The UK Government’s ratification of the UN Convention in 2008 was a potent commitment to protect disabled people’s rights, obligating domestic legislation to align with its principles. However, as we traverse through 2023, it’s distressingly apparent that the NHS has systematically breached this social contract, casually discarding the rights of the disabled.

The NHS’s Mental Health Act 1983 blatantly contravenes the UN Convention, notably:

• Article 12, Equal Recognition Before the Law: This Act permits restriction of legal capacity based on mental health status, infringing upon personal autonomy and decision-making rights.

• Article 14, Liberty and Security of the Person: This Act shockingly allows involuntary detention and treatment of people with mental health conditions based on their disability, violating their right to liberty and security.

• Article 15, Freedom from Torture or Cruel, Inhuman, or Degrading Treatment or Punishment: This Act neglects to shield individuals from non-consensual treatments such as electroconvulsive therapy and psychosurgery, which could amount to torture or inhumane treatment.

These issues have persisted for years. In 2013, the UN Special Rapporteur on Torture called for an outright ban on these reprehensible practices.

Regrettably, the proposed Mental Health Act reforms lack the depth needed to align the NHS fully with the United Nations Convention. A fragmented approach is grossly insufficient in addressing these grave infractions.

The field of psychiatry has largely remained reticent on this matter, often keeping these concerns concealed. The victims, who are often society’s most vulnerable, have their stories systematically suppressed.

Alarmingly, our media has mostly remained mute, a tacit accomplice to these profound human rights violations. The much-needed transparency is missing, replaced by a stifling silence that only magnifies the problem.

We must break this silence with knowledge, empathy, and decisive action. Disseminate this information broadly. Challenge the apathy that perpetuates these horrors.

We must unite and place collective pressure on the NHS to uphold its duty to protect the rights of disabled persons. The time for change is now. Let us stand together and navigate our society towards a future where health care is genuinely fair, and human rights are unreservedly respected.

David Gray-Hammond 1 Comments
May 12 2023
Creating Autistic Suffering: What is Atypical Burnout?

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

The literature around Autistic burnout is in it’s infancy with regards to academic papers, most of what exists comes from lived experience and blogs written by Autistic people themselves. The first academic paper on Autistic burnout was written by Raymaker et al (2020).

This paper describes Autistic burnout as:

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.”

Raymaker et al, 2020

The following image from the paper shows how life stressors and barriers to support culminate in the outcome of burnout for Autistic people.

Typically the Autistic person in question will still have multiple demands in their life that require cognitive resources, despite having little to no resources left to give. Life goes on, as they say.

Burnout is widely understood and reported to be misdiagnosed in Autistic people as depression (Raymaker et al, 2020). This isn’t without basis; burnout can look like stereotypical features of depression such as not being able to attend to day-to-day life and losing one’s enthusiasm for things that used to be enjoyable. People experiencing burnout can struggle to get out of bed, although this is not necessarily a defining feature.

We are moving towards a measurement of Autistic burnout, although it is still in it’s very early stages. Papers such as Arnold et al (2023) suggest looking at things like issues with memory, emotional numbness, and difficulty communicating; all of which are usually taken as features of depression. It’s easy to see where the difficulty in differentiating arises.

The key difference in our opinion is that while burnout can lead to depression, it does not start there, and is rarely responsive to typical treatments for depression. Autistic burnout starts with monotropic split (Adkin, 2022) over a sustained period of time. Burnout recovery can take months or even years, and the recommended course of action is usually to remove as many demands as possible, and recharge through interest-led activities.

As Autistic people, we naturally live as demand free as possible. We do this because whether we are aware of it or not, we have to account for the distribution of our cognitive resources.

So, what happens if we can’t stop?

There are many reasons that an Autistic person may not be able to stop and recover; we may not be able to sense our exhaustion (due to interoceptive differences), masking (it may not be safe to practice authentic expression, it may not even be conscious), responsibilities such as child care, work, and home management. We may have co-occurring ADHD.

What we should try and remember is that burnout is not necessarily a set of observable traits that conform to a checklist. It literally is the result of going into an energy deficit on a regular basis.

Atypical Burnout

The use of the word atypical is not to create a neat category for an observable form of burnout. What we are referring to is burnout that might look different to the typical “depressive” understanding. In our experience it is not at all rare or atypical. We come across this time and again.

What atypical burnout can look like is being stuck in a hyper-aroused state, Tanya often affectionately dubs this as “meerkat-mode”, she describes a meerkat-type nervousness, constantly on the look out for danger, unable to focus and self-regulate creating the need for constant co-regulation with another person, and a fear of being left alone. This is sometimes misinterpreted as attachment disorder because of the childs perceived over-attachment to a parent or safe person. We often see this type of response from children and young people in traumatic school environments for extended periods of time.

This is usually accompanied by significant changes in sensory needs, especially interoception. This can result in a loss of sense of self, and reports of voice hearing. Individuals in this state appear to struggle to differentiate between our own thoughts and something external to their own being. This may be related to the high rates of occurrence of psychosis amongst Autistic people (Varcin et al, 2022).

It would be important at this point to mention monotropic spiral. We may internalise beliefs that seem negative and/or delusional in nature. We can seem stuck in a loop that drags us deeper into these internalised notions.

Rituals and routines can become more pronounced and seemingly compulsive, this is usually in an effort to create some attentional resource and ease an overloaded monotropic neurology.

There is a growing under-current in various circles questioning the validity of the diagnosis of Emotionally Unstable Personality Disorder (formerly known as Borderline Personality Disorder). We know that this is commonly misdiagnosed in Autistic people (Fusar-Poli et al, 2022). We also know that there is a huge amount of sexism involved in the identification of EUPD; women out-number men 3 to 1 in the diagnosis of EUPD (Bjorkland, 2006).

When we reverse that lens, men out-number women 4 to 1 in the formal identification of autism (Rynkiewicz, 2016). Considering the high co-occurence of ADHD and EUPD (Philipsen, 2006) and the well-known co-occurrence of autism and ADHD; is it possible that we might be looking in the wrong direction? Could many of these people be experiencing a protracted, atypical, Autistic burnout?

Or is it just a big coincidence?

References

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

Arnold, S. R., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023). Towards the measurement of autistic burnout. Autism, 13623613221147401.1

Bjorklund, P. (2006). No man’s land: Gender bias and social constructivism in the diagnosis of borderline personality disorder. Issues in mental health nursing, 27(1), 3-23.

Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European archives of psychiatry and clinical neuroscience, 272(2), 187-198.

Philipsen, A. (2006). Differential diagnosis and comorbidity of attention-deficit/hyperactivity disorder (ADHD) and borderline personality disorder (BPD) in adults. European archives of psychiatry and clinical neuroscience, 256, i42-i46.

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

Rynkiewicz, A. (2016). Autism spectrum disorders in females. Sex/gender differences in clinical manifestation and co-existing psychopathology (Doctoral dissertation, PhD Dissertation. Retrieved from Medical University of Gdansk Bibliography Database 2016).

Varcin, K. J., Herniman, S. E., Lin, A., Chen, Y., Perry, Y., Pugh, C., … & Wood, S. J. (2022). Occurrence of psychosis and bipolar disorder in adults with autism: A systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews, 134, 104543.

Tanya Adkin 3 Comments
May 12 2023
What is it like to be Schizophrenic?

I have written a fair amount about how I don’t view my being Schizophrenic as an illness. This in itself seems like a bold claim given the way that society has pathologised anyone who (by means of their bodyminds neurology) can not perform neuronormativity. Neurotypicality has been set as a standard for how one should embody themselves with everything outside of it being viewed as illness.

What I feel is necessary is to position my Schizophrenic bodymind within the experiences that it creates. It is also important at this point to note how one’s environment plays a role in the generation and sustenance of those experiences. I can not actually point to a single “Schizophrenic experience” (if such a thing exists in such explicit terms) that was not triggered by the affordances of my environment.

Schizophrenia is strange. Much like autism, it is not a separate entity to myself awaiting removal, but it is also somewhat like a travelling companion that might not always give you the best advice. At times, you are certain it is trying to kill you.

I live my life with a certain level of paranoia. My mind is one that will assume people intend to harm me. I am often somewhat concerned with non-existent conspiracies that centre around others’ meaning to harm me. For the most part, I can look past it. 99% of the time, these are fleeting thoughts. Occasionally, they will take hold, creating anxiety and fear that I often mask. It is rarely perceptible to others, or even of note in it’s affect on my outward behaviour.

I have largely learned to co-exist with myself.

Perhaps more distressing are hallucinations. When the episodic nature of my schizophrenia is ramping up, I can hear multiple voices. Often, these voices will stoke the fires of paranoia. They not only talk directly to me but also to each other. At my worst, I live with a constant and derogatory commentary who will not interact with me.

When I hear these voices, they sound as real as talking to a friend in person. Usually, they are disembodied. Sometimes, they emanate from electronic devices.

I have visual hallucinations that look as real as you or I, I see things that defy description in any language I have access to. Reality during an episode can become somewhat of an abstraction.

Perhaps most frustrating is that at the very height of an episode, I can loose control of my speech. My mind will race so fast and jump from topic to topic in a way that I can not verbally communicate. It is perhaps the scarier of the traits; it feels like I am communicating fine, but all people hear is gibberish.

The final aspect I would like to consider is delusions. This is the culmination of all the experiences that alter my beliefs about the world around me. The world I believe in feel 100% real. No amount of evidence or discussion can shift these beliefs. If anything, I cling to them more so.

Despite these terrifying experiences, I co-exist with this aspect of my bodymind. I have come to learn a great deal about who I am and what my desires are through the ways that my mind alters reality. I have come to understand that psychosis is protective. When reality is too much, my mind creates a more acceptable reality. Or at least, one that I can understand more easily.

I am at peace with who I am. I have come to realise that the people who fear me for being Schizophrenic are victims of a system that has positioned people like me as dangerous, despite evidence to the contrary.

I want others who are Schizophrenic or experience psychosis to know that I see them. I know the isolation that our minds can create. I know how it feels to have to question your thoughts constantly, to wonder what is real, and what your mind has generated.

I want you to know that even at your most lonely, there are others our there who get it, we know, we care. The world is brighter for having diversity in it, and we are a part of that diversity.

David Gray-Hammond 2 Comments
May 8 2023
Mask on, Mask off: How the common understanding of Autistic masking is creating another mask

This post was authored by Tanya Adkin

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

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

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

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

Pearson & Rose, 2021

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

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

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

Gray-Hammond & Adkin, 2021

This feeds back into Beardon’s Golden equation:

Autism + Environment = Outcome

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

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

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

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

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

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

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

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

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

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

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

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

References

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

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

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

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

Tanya Adkin 2 Comments
May 7 2023
The troubling tale of CAMHS: A service that is not fit for purpose

When we think of mental health services, I’m sure a lot of images are called to mind. Some people might imagine the institutions of days gone by, where people in significant states of dysregulation under the watchful eye of orderlies, nurses, and doctors. Others might think of therapy sessions, sitting in comfortable chairs with a well-dressed person employing Freudian psychoanalytic analysis.

If you’re an Autistic child, you probably don’t know what to picture; it’s likely you haven’t been given access to the service that is meant to support you. This service is the Child and Adolescent Mental Health Service. You probably know it by a shorter name;

CAMHS

According to the Mental Health Foundation, 70% of Autistic people will experience a mental health issue. This already is deeply concerning. Mind asserts that 25% of the population will have a mental health issue in a given year. Why are Autistic people experiencing mental health problems at nearly three times the rate of the general population?

The Mental Health Foundation offers a suggestion for this as well; lack of access to appropriate support. In this case, CAMHS denial of support to Autistic children could very well be creating the mental health issues they are refusing to address.

According to a study from BMJ Open Online only 10% of the children under the care of CAMHS were diagnosed Autistic. Given that all the statistics that exist only really look at diagnosed Autistic children, we should expect Autistic children to represent the majority of CAMHS service users. However, perhaps the disproportionately high rate of mental health issues amongst Autistic people could be more balanced if we were getting appropriate support in the first place.

I have personally written about the negative effects that CAMHS failures had on me, I do not wish for another child or young person to experience what I did. Lets not forget that The Royal College of Psychiatrists suggest that Autistic people are nine times more likely to die by suicide than the general population. At what point do we acknowledge the role that underfunded and altogether disinterested CAMHS plays in these statistics?

Autistic children need robust support from competent and safe professionals. It’s not enough to simply see our children. These services need to create an environment where it is unheard of to refuse access because of an Autistic identity and lack of staff knowledge. Trust me, we know that highlighting their refusal to see us is just the start of this fight.

Part of the problem lies with the National Institute for Health and Care Excellence (NICE) and their guidelines for co-existing conditions in Autistic people. They are very non-descript and offer little meaningful suggestions for supporting us. Many of the suggested “interventions” don’t have a good evidence base or may even do more harm than good.

We need to create a world where being Autistic is more than an afterthought. There are so many of us out there, and yet society at large treats us like the cryptids one might find in the woodland of North America. Except I am not a questionably blurry image of an unknown creature, I’m a living, breathing human being.

Autistic people have lives, they have hopes and dreams, and we feel joy and sorrow. More than anything, we deserve equal access to the parts of society meant to support us in our lives. But when funds are cut to services like CAMHS, Autistic people are the first to become acceptable losses.

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David Gray-Hammond 0 Comments
May 5 2023
Why Mental Health Awareness Month is failing Autistic people

May is Mental Health Awareness Month. The bitter irony that this comes immediately after the dreaded Autism Awareness Month/Autism Acceptance Month is not lost on me. After a month of fighting hard to be heard over the corporations who monetise our existence, May can feel quite offensive in its positioning of mental health.

We need people to learn about mental health. I will never say we don’t need that. Psychological distress is a heavily misunderstood and stigmatised state of being that threatens not just a person’s wellbeing but also their life. The problem is that when you are Autistic, discussion of mental health can be infuriating.

For as long as we’ve existed, psychological distress has been ignored in us. I often think of my own 14 year journey to get a schizophrenia diagnosis from psychiatrists who would tell me I was “just anxious” and that anxiety was “normal” in autism. Normal. Professionals have come to see our suffering as acceptable, and therein is where the problem lies.

There is no acceptable level of distress. However, the institutions that are responsible for our wellbeing have created the concept of normalised suffering because it shifts the focus off of the structures and power imbalances that traumatise us at every turn. Rather than change the parts of society that do harm, they label the fallout as “normal”.

Autistic people are so often left out in the cold with regard to their mental health. Services like CAMHS and adult mental health services will actively turn away Autistic people. Even those who do manage to access support are often met with cultural incompetency and therapies not designed for them. It feels as though we have to do things for ourselves at a time when we most likely feel incapable.

So, yes, May is Mental Health Awareness Month, but it’s not enough to learn about depression and anxiety. We need to create a culture where those who are most vulnerable have access to good quality support, and are not made to feel like outsiders for not blending with the crowd.

Autistic people deserve a happy life.

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David Gray-Hammond 1 Comments
Apr 24 2023
Intergenerational trauma and the perpetuation of harm

“Mother is God in the eyes of a child”

William Makepeace Tackery

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

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

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

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

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

We didn’t.

It’s not okay.

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

We have become masters of our own torture.

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

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

David Gray-Hammond 1 Comments
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