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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 16 Comments
May 27 2023
Why is it so important for CAMHS to support Autistic children?

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

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

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

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

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

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

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

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

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

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

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

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

David Gray-Hammond 1 Comments
May 21 2023
Autism and addiction: co-existing with a mind that seeks oblivion

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

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

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

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

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

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

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

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

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

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

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

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

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

David Gray-Hammond 1 Comments
May 20 2023
When you blame autism on brain damage, you harm every Autistic person who exists

Autism elicits a wide range of responses from people. In the Autistic community, we are relatively protected from harmful views on our existence if we wish to be. For many of us, however, there is the ever-present threat of our existence being used to enforce beliefs that are overtly harmful.

People have argued ad nauseum about the “cause” of autism. Vaccines, radiation, antenatal intake of paracetamol use. In one particularly bizarre twist, I was told that Peppa Pig causes autism. That was an odd conversation. Regardless of what may or may not have led to the existence of Autistic people, these narratives are incredibly harmful.

When people look for a cause, what they are really asking is “how is this person damaged?”

We have been positioned as living tragic loves, devoid of humanity; mindless automatons that express no love and feel nothing that can be quantified by our neurotypical carers. We are placed into the role of perpetual burden, afflicted by an abstract concept that has stolen our parents wishes for our future.

This isn’t to say that all Autistic people have the privileges I do. I am a relatively well-educated, white, cis-gendered, perceptible male person. I am what is usually expected of an Autistic person (on the surface at least). Many of us exist at multiple intersections. We have differing support and care needs, we have a variety of co-existing diagnoses, we come from various races, social groups, gender identities.

Autism doesn’t discriminate in who it affects because it doesn’t exist as a separate entity. In literal terms, autism doesn’t exist. It’s not some invisible force that steals us away from the world. It’s at the core of how we experience the world and embody ourselves. Autistic people do exist, and writing our stories as a Shakespearian tragedy serves no purpose than to make our lives harder.

The idea that we existed “pre-autism”, that we were something different before becoming different hurts. It places us in the position of feeling less valuable. We live in a world that is increasingly throwing away things that break. If we’re broken, when will you throw us away?

Rather than fixate on why we are the way we are, why not accept that we are here as we are. Instead of pouring efforts into preventing us, into identifying what broke us, that energy could be spent helping us thrive. Thriving doesn’t have to mean working full time and raising an army of children. The time that is spent on prevention of people like me could instead be spent on working out what thriving looks like amongst the diverse Autistic community, and how it might be achieved.

Autistic people deserve to exist. No human exists to be moulded into a comfortable shape for others, so why do we hold Autistic people to a higher standard? Why do we focus on the discomfort that our existence causes for normative society?

Perhaps the time has come to look to our shared goals and to move beyond the world of pathology.

I am different, not damaged.

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 20 2023
Autism and ADHD diagnosis and the problem with cultural competency among diagnostic professionals

It’s no secret that diagnosis in the UK (and, in fact, the world at large) is increasingly difficult to access. I have written at length about diagnosis, such as this article on why getting a diagnosis is so difficult, and this piece considering the issues with current diagnostic criteria. Whichever way you look at the current situation, it’s pretty dire.

Currently, there are around 700,000 Autistic people with 122,000 people with am open referral for diagnosis between July 2021 and June 2022. In terms of ADHD, it is estimated that a total of 2.6 million people meet the diagnostic criteria. Autistic children are waiting up to five years for an appointment, with many adults having to go down the private route to obtain a diagnosis. The situation is not any better in terms of ADHD with people waiting (again) up to five years for assessment.

The problem, however, is more complicated than just waiting times. Assuming you can get a referral in the first place, many professionals have very rigid and stereotypical views on how autism and ADHD present in individuals. At this point, I feel it necessary to mention the long-held and deeply inaccurate belief that these diagnoses belong to little boys. This is a view that has been perpetuated by biased research and misinformed media offerings.

This culminates in a culture within which Autistic and ADHD individuals are misdiagnosed or rejected from the diagnostic process for not fitting the diagnostic criteria written in the DSM and interpreted by the diagnostician.

What we are talking about here is a lack of cultural competency. Specifically, we are talking about the concept of neurodivergence competency as conceptualised by Tanya Adkin and written about by the both of us. As you will see from the above linked article, it is not enough to be “neurodiversity affirming”, one needs to have the foundational knowledge and nuanced perspective provided by engagement with the community in question.

This is what is missing. Professionals who diagnose autism and ADHD rarely have cultural experience. In my opinion, if your job is to identify neurodivergence, you should be active in the communities to whom that identity applies. It is not enough to have studied medicine and read some relevant sections of a textbook. To understand what autism and ADHD look like in day-to-day life, professionals need to understand our culture.

This allows a person to see how ideas such as monotropism and the double empathy problem practically apply to neurodivergent lives. It allows them to have a practical understanding of how we mask and camouflage our neurodivergence. It presents the opportunity to engage with the power structures that oppress us and understand the numerous ways we are traumatised and how that might present.

It seems non-sensical that after years of waiting for a formal diagnosis, a person might be turned away on a technicality. When a lack of cultural competency stands between a person and a validation of their identity, something is fundamentally broken. People deserve access to and validation of who they are. Gatekeeping it behind services that are oversubscribed, underfunded, and that have no post-diagnostic support to offer is perhaps one of the most unethical things that a branch of medicine can do.

In truth, requiring a diagnosis fundamentally undermines the neurodiversity movement, but the current world is yet to move beyond such diagnostic models. Until such time that diagnostic professionals engage with the communities they exist to serve, there will be a significant power imbalance, and Autistic and ADHD people will be the ones paying with their lives and wellbeing.

David Gray-Hammond 0 Comments
May 14 2023
What is it like to need mental health services when you’re Autistic?

According to statistics, 70% of Autistic people have a mental health condition. This is deeply concerning compared to the 25% of the general population that will experience a mental health problem in a given year. Autistic people are also much more likely to die by suicide with current statistics suggesting that the National Autistic Society assert that there is an increased risk of suicide mortality with the Royal College of Psychiatrists suggesting we are nine times more likely to die in such circumstances.

Given these deeply concerning statistics, the causes of which you could author several books on (I know because I wrote some of them), it is no surprise that Autistic people often find themselves in contact with wellbeing and mental health services. Personally, I have been under the care of secondary mental health services (CAMHS as a child and ATS as an adult) for over half of my life.

Both services had their failings, and CAMHS has been in crisis seemingly since it’s formation.

The first thing you need to understand about specialist mental health services in the UK is that they don’t really use a prevention model for intervention. Instead, they use a crisis-driven intervention model that only begins work with you when you are deeply suffering. This was particularly problematic for me as a drug addict; I was perpetually in crisis, but the wrong sort of crisis for professionals to take me seriously.

In my early twenties, I was under the care of a Substance Misuse Service alongside my mental health support. This was remarkable to be between. Like many others, I found that services were never quite sure who should take the lead. It became a self-sustaining cycle of “treat the mental health issues to fix the addiction, fix the addiction to address the mental health issues”. I have witnessed many of my peers fall between the cracks and disappear because of the back and forth of treatment and support.

What has always been quite remarkable for me is the complete lack of understanding of autism in just about every person who said they were prepared to work with an Autistic “service user”. Professionals were often unable to understand my experience, even with the best of intentions behind them. It complicated the feelings of alienation and isolation.

Therapy was always a tricky affair. More or less every single therapy I was offered was based in behavioural methods such as Cognitive Behavioural Therapy (CBT); despite it’s widely known lack of efficacy in the Autistic community. At best, therapy has been moderately helpful, and I have benefited from being able to just talk about the horrible things that have happened to me.

Autistic people experience ALOT of trauma over their lives.

From a more practical standpoint, trying to engage with services has been deeply problematic. I am Schizophrenic. I need to engage, but as an Autistic person, I need predictability and accountability. Professionals are often spotty in their communication, disappearing for weeks at a time, not fulfilling appointment I have made, or being late. This has made engagement quite an upsetting process for me.

While I am “treatment-compliant” I have also found that my medication gets fiddled and altered very regularly. The problem with psychiatry is that it’s so inexact that it barely seems like a branch of medicine at times. Side-effects and constant worry of change sometimes make you feel less willing to engage. I am no exception. Sometimes I have to wonder what’s the point?

Services feel very impersonal. It seems that case-loads for those coordinating our care are so high that we’re lucky that they even remember our names at times. As a person under these services, it is very evident to me just how much they have been defunded by the people in charge. I have to wonder if there would be as many issues if the government appropriately resourced the mental health sector.

There is a point to this. It’s May. Mental Health Awareness Month. Now is the time (apparently) to open up. Autistic people deserve adequate care for their mental health and are not receiving it. Most of us either go private, or accept that things will never be quite as smooth sailing as they could have been. If you’re going to raise awareness of anything this month, think about the Autistic people who are being shortchanged by a service that could very well save their life.

For more of David’s writing, please consider purchasing a subscription to David’s Divergent Discussions.

Don’t forget to head over to the CAMHS resource page and sign the petition to get proper support for Autistic children.

David Gray-Hammond 0 Comments
May 12 2023
Creating Autistic Suffering: What is Atypical Burnout?

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

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

This paper describes Autistic burnout as:

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

Raymaker et al, 2020

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

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

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

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

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

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

So, what happens if we can’t stop?

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

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

Atypical Burnout

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

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

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

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

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

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

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

Or is it just a big coincidence?

References

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

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

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

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

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

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

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

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

Tanya Adkin 12 Comments
May 11 2023
What is it about ABA that is so harmful to Autistic people?

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

So, what is ABA?

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

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

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

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

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

Back to the point

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

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

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

How does this relate to ABA?

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

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

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

Why is this a problem?

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

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

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

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

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

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

David Gray-Hammond 0 Comments
May 9 2023
How many Autistic people are in inpatient units in the UK?

When we consider the world of inpatient psychiatric care, we often think about types of neurodiversity like schizophrenia and bipolar. While it is true that these individuals represent a considerable number of admissions, there is a darker side to admission to hospital. Detainment and admission is not solely the realm of traditional psychiatric “conditions”; Autistic people are being locked away for months or even years.

This issue has become so prevalent that the government has had to commission inquiries and reports into the matter. Still, there are a disturbing number of Autistic people locked away in these institutions.

According to the National Autistic Society, as of January 2022 there were 1,185 Autistic people held within the inpatient psychiatric system. Of this, around 1 in 7 (165) were under 18 years of age. It’s not just Autistic adults being detained, it’s our children too. This represents a stark departure from the so-called schemes of “care in the community” that promised to empty asylums and create a community culture of caring for our most vulnerable.

Instead what has happened is the systematic incarceration of Autistic adults and young people for no other reason than not having the correct services in place to support them in their independence. This becomes even more concerning when you consider the current rate at which care home and inpatient units are experiencing scandals around the mistreatment and abuse of those they are supposed to care for.

Autistic people are being abused daily in these settings, despite evidence to suggest that inpatient units are inappropriate settings for Autistic people. What we are seeing is the systematic practice of locking away people because our society is unwilling and unable to give them meaningful support at home. To my mind this is against the Mental Capacity Act (2005), in particular principles 4 and 5 of the Code of Practice:

“An act done, or decision made, under this Act for or
on behalf of a person who lacks capacity must be done, or made, in his best interests”

Principle 4, Mental Capacity Act Code of Practice

“Before the act is done, or the decision is made,
regard must be had to whether the purpose for which it is
needed can be as effectively achieved in a way that is less
restrictive of the person’s rights and freedom of action.”

Principle 5, Mental Capacity Act Code of Practice

Given that inpatient treatment does not improve outcomes for purely being Autistic, there is a significant and unresolved risk of abuse, and the overt removal of a person’s freedom, I would argue that both principles 4 and 5 have been failed. One might argue that the Mental Health Act (1983) should take precedence which allows for the detention of people who are at risk to themselves or others.

First I would bring your attention to this section of the Code of Practice:

“The MCA should be central to the approach professionals take to patients who lack
capacity in all health and care settings (including psychiatric and general hospitals).
The starting point should always be that the MCA should be applied wherever
possible to individuals who lack capacity and are detained under the Act.”

Section 13.11, Mental Health Act Code of Practice

We have to consider what is being classed as risk, and whether the deprivation of a person’s liberty is necessary. I posit that in most cases, Autistic people remain in inpatient settings because services have no resources to appropriately address their dysregulation in the community.

An Autistic person’s freedom should not be decided by government funding.

To boot, the prinicples of the act itself state that professionals should use the:

“Least restrictive option and maximising independence”

SWLSTG NHS Trust

In what world is indefinite detention in an institution the least restrictive option? Since when does detention be decided by community resources? This is a dangerous precedent to set, it opens up the entire neurodivergent community to facing detention.

When we consider the Royal College of Psychiatrists disturbing statistic that Autistic people are nine times more likely to die by suicide, and combine that with the fact that according to The Nuffield Trust there were 1,357 suicdes in 2019 amongst people who had been in contact with mental health services. Something is going very wrong, and I suspect that, in part, it is the number of Autistic people being detained wrongfully under The Mental Health Act.

It is clear that this situation is out of control. Autistic people should be supported to freely live their lives, not spend years locked in seclusion rooms suffering chemical and physical restraint as a daily practice. Sadly, until such time that our government supplies appropriate funding and resources to services, we are going to continue to witness the systemic mistreatment and killing of Autistic people.

We are Autistic, not monsters to be hidden away from society.

Make sure you check out the CAMHS crisis resource page.

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David Gray-Hammond 2 Comments
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