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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 15 Comments
Mar 23 2023
Autistic people should not have to educate their therapist

I have had extensive therapy, as one might expect for a recovering drug addict who is also Schizophrenic. I have had mindfulness therapy, Acceptance and Commitment Therapy. I’ve had Cognitive Behavioural Therapy, trauma therapy, psychoanalytic therapy. I’ve also had courses of therapy that use mixed approaches. Thanks to the NHS here in the UK, I have recieved all this for free. The problem is that while free, it was time limited.

Here is why that has been a problem for me as an Autistic person.

So often, therapists have said that they are able to work with my admittedly rather complicated profile of experiences. In particular, they will often claim that they have experience working with Autistic clients. The problem is that fundamentally, they don’t have a clue. This has left me with a difficult decision; educate the therapist or endure hours of inappropriate therapy.

People don’t come to therapy because they are in a good place. In the UK, a lot of therapy is gatekept behind “thresholds” of distress. Most (if not all) NHS trusts currently operate on a framework of crisis-driven intervention, which means that a person has to be in crisis before they receive support. Why then are we expecting Autistic people to waste their spoons and therapy sessions teaching a therapist what life is like as an Autistic person?

When we approach a therapy session, we come with the expectation that the therapist is the expert. Being faced with a professional who has little knowledge outside of awareness courses and mandatory training not only places the onus on the Autistic person to educate them; it undermines our confidence in the effectiveness of therapy. Having a level of confidence that therapy can work is vitally important to the process.

Therapists who do not understand Autistic experience will often employ behavioural strategies and infer thought patterns that are overtly incorrect. This can leave Autistic people feeling like therapy is more of an exercise in gaslighting than something there to help them. When faced with this, Autistic people will often feel forced to explain Autistic experience to their therapist. This means that time is wasted, and the process itself can often be intensely triggering, making any crisis worse.

This is why therapists need to spend time engaging with the communities that they work with in not only a professional context but also in the context of being the learner to willing educators. It is not okay for therapists to expect free labour from those in crisis.

This is perhaps one of the biggest accessibility issues in the world of therapy. Until such time that it is resolved, Autistic people are going to be left out in the cold during their time of greatest need.

David Gray-Hammond 1 Comments
Sep 14 2022
Is mental “illness” actually the brain trying to protect itself?

Up until about a year ago, I still sat firmly in the camp that, while I viewed myself as multiply neurodivergent, I was mentally ill. Over the past year I have been unlearning this lesson, and realising that mental “illness” is completely unquantifiable, and instead, I was suffering because I had been repeatedly traumatised, and then lived in a world incapable of accommodating the particular neurodivergence I had acquired. Psychosis.

People hold on tightly to the idea that they are mentally “ill”, and understandably so. The deficit model of mental health has been pushed on us quite successfully, but what if it’s not the person who is ill?

Consider depression. A person experiences a traumatic event (remember, what is traumatic to me, might not be traumatic for you) and starts to feel as though nothing goes well for them. They withdraw from their environment and isolate. Is this an illness, or is this the human brain doing it’s best to protect itself from trauma?

Now consider that the cultures with live with, particular in western society, actively punish people who have experienced trauma. There is a lack of welfare benefits, inadequate and under resourced wellbeing services, and let’s not forget that humans are effectively judged by whether or not they make the right amount of profit while performing a neurotypical display so as to not make others uncomfortable.

To me it seems clear where the suffering is actually stemming from, and it isn’t the person.

However, let me be clear, this does not mean that people should stop taking their medication. I take medication, and it helps a lot. Attention Hyperactive people take meds to help them focus and perform daily tasks.

What I am saying is that while medication can be an important part of wellbeing, we need to recognise that this pathologisation of our human experiences has (for the most part) normalised our suffering.

In the same way that Christianity told factory workers during the industrial revolution that being in poverty guaranteed them riches in the afterlife; pathologising neurodiversity has told us that we are the broken, rather than letting us turn the lense on an oppressive world.

Sadly, many institutions (medical included) have a tendency to serve the overall economic climate, rather than the people they are supposed to help.

So where do we go from here?

We need to build on the neurodiversity movement and paradigm. We need to recognise that despite our suffering, we are not the sick ones. What is sick, is the society we live in. When enough of us stand up and say no, society is forced to change. We need to recognise the rampant oppression and abuse of power, and seriously consider it’s role in the development of so called psychiatric “disorders”.

In short, brains do what they can to try and protect us from suffering, sadly, society continues to inflict pain.

It’s time to drop the disorder.

David Gray-Hammond 8 Comments
Jul 3 2022
ABA: Essentialism in practice

For as long as I have been part of the online Autistic community, we have spoken out against and educated on the topic of the harms of Applied Behavioural Analysis (ABA). While I could discuss the real world trauma and attitudes that proceed and preceed ABA respectively, today I’d like to take a more philosophical approach (I know, surprising right?).

It seems to me as though the existence and practice of ABA comes down to essentialism, or in more accessible terms; it comes down to the belief that people belong to specific categories with specific traits. This essentialism than has a provincialist spin put on it where by those with a predominant neurocognitive style widely apply their experiences as the “correct” experiences.

This allows for a discourse in which the Autistic person is then subject to “behavioural intervention” for “their own good”. However, the problem with behaviourism on the whole is that (and stick with me on this) Autistic behaviour is not mindless.

Behaviourists focus almost exclusively on outward expression of the self, with little to know regard for how the self experiences its world internally.

The problem with being you, is that you can only be you, you cannot experience another’s inner world, you cannot even prove another person is a sentient being. This is the entire basis of a school of thought known as solipsism. So given this solipsistic conundrum, how might one determine the inner experience of the other self, and how that defines their behaviour?

You allow them to tell you.

The problem is that the neurologically queer are seen as lacking in capacity to speak on their experiences. Remi Yergeau calls this “demi-rhetoricity” in their book Authoring Autism“. This demi-rhetoricity exists because Autistics are considered paradoxically to be either too Autistic to be able to speak on their experiences, or not Autistic enough.

So now we live in world where Autistics are subjected to behavioural interventions wherein they are invalidated and traumatised despite their outcries to stop.

A popular claim of ABA is to discuss it’s so-called evidence base. The problem with this evidence base is that pesky essentialism/provincialism problem I mentioned earlier. I’m sure a lot of Autistic people have been converted by this intervention (after all, it was literally pioneered by good ol’ Lovaas, the father of conversion therapy), but what is actually being achieved?

Yes, the Autistic person may behave in a more neurotypical manner, but fundentally they are still Autistic. The only salient difference is that now they have been tortured into hiding that which defines their experience. To quote/paraphrase Nick Walker “you can’t unqueer a queer mind, you can only make it multiply queer”.

The real world application of this snippet of neuroqueer theory is this; you can’t turn an Autistic person into a non-Autistic person, you can only force them to behave like a neurotypical, leaving you with a traumatised Autistic.

What happens when people are traumatised from a young age? Addiction, psychosis, depression, anxiety, suicidality (by the way, Autistics are much more likely to die by suicide than the general population, I wonder why that is?). The never ending list of trauma-induced outcomes is pretty endless.

We have a fundamental problem in that trying to stop ABA from being inflicted upon us is like trying to stop a cult that has become mainstream religion. Those out there proselytising will not give a second thought to inflicting violence and aggression on the dissenters. After all, how dare the neuroqueer masses voice opinions that contradict the beliefs of the neurologically typical?

As a final thought, you may currently be experiencing a great deal of pressure to enter your child into an ABA program. I promise you they will be much happier if you forego the 40 hours a week of intensive torture, and instead listen to those of us who share in the strengths and struggles of your child. We may seem different now thar we are adults, but you would be surprised how much we had in common with your child prior to adulthood.

You’d be surprised how much we still have in common now.

David Gray-Hammond 2 Comments
May 11 2022
Double empathy, solipsism, and neurotypicality

Why do interventions such as Applied Behavioural Analysis and Positive Behavioural Support exist? Why is it that our world uses neurotypicality as the standard from which neuronormativity is drawn?

Fundamentally, I believe that it comes down to the double empathy problem. Autistic people have a different style of communications to those with a predominant neurocognitive style in their culture. This creates a breakdown in communication, and due to the power imbalance in neuronormative culture, neurotypicality is considered superior, we are so often labelled as “disordered” or as having “deficits”.

But why is this happening? Where does this neuronormativity arise from?

I believe that to understand neuronormativity, we must first understand Solipsism. Solipsism is the belief that only the self and its experiences exist. A solipsist would believe that their experiences are the only experiences, essentially reducing others and their experiences to sub-human automations.

This is where I believe that neuronormativity arises from. A kind of strange solipsism.

In my opinion, while neurotypicals have been using ideas such as theory of mind to accuse Autistics of lacking the ability to know another’s mind, neurotypicals have been so unaware of the existence of neurodivergent experience that they will inflict pain on us to “help” us conform to their standards.

To put it another way, do most neurotypicals believe not only that their experience of the world is the “right” experience, but also the only experience of the world?

This means that when neurotypicals witness Autistic communication, they experience a kind of cognitive dissonance that results in their lashing out in the form of behavioural interventions, because they fully believe that the only way to exist is by the weird neuronormative standards that are enforced upon society.

What even is neurotypical?

That changes depending on the cultural environments, but in this sense it can be considered the predominant neurocognitive style in a given culture (Walker, 2021).

Neurotypicalilty is essentially a performance. It is a style of existing.

This effect has created a power imbalance wherein regardless of the number of neurotypicals in the room, they are still considered the gold-standard.

To me, it doesn’t seem like Autistic people are the ones needing an intervention.

David Gray-Hammond 1 Comments
Jan 2 2022
Creating Autistic Suffering: Neuronormativity in mental health treatment

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

Trigger Warning: This article contains mentions of systemic mistreatment in the mental health setting, traumatisation, references to pathologizing theories and language, mention of cultural ignorance, and discussion of mental health conditions inlcuding cluster B diagnosis and misdiagnosis.

It seems to be common knowledge in the Autistic community that Cognitive Behavioural Therapy (CBT) by and large does not work for Autistic people. Lets dig a little deeper. The fundamental issue with CBT and other similar therapies is that they were designed around the predominant (or neurotypical) neurotype (Kelly and Farahar; 2021). These therapies were largely developed in the western hemisphere and therefore tend to adhere to western standards of ‘normal’. This presents the first of many issues, even before you consider the Autistic neurotype, not everyone will fit into those cultural standards.

According to NICE guidelines, CBT and related therapies should be adapted to be appropriate for Autistic individuals on a case by case basis, but the guidelines fail to discuss what these adaptations should be, based on input from Autistic individuals, and are instead somewhat generic in nature.

“Consider adapting the method of delivery of CBT for Autistic children and young people with anxiety”

NICE Guidelines (2013, updated 2021)

The guidance then goes on to offer very little meaningful advice beyond emotional recognition training and simplification of tasks. It is quite clear that the Autistic community has not been consulted on this guidance.

The above example is part of a much larger and more pertinent question; is the application of neuronormative mental health theory and therapies actually largescale gaslighting of neurodivergent individuals?

Whenever we look at supports for Autistic individuals or common “deficits” cited for those of us with that particular neurotype, a lot of it is centred around difficulties with emotional recognition, alexithymia, and our inability to mentalise another’s emotional state (Baron-Cohen et al; 1985). In fact, theory of mind posits that our inability to mentalise the psychological state of others leads to deficits in social communication and the ability to empathise. Perhaps then it is easy to see where therapies informed by this research are already beginning to fail their Autistic patients.

Psychological therapies start from the position that there is one correct way of experiencing the world, this in itself is neuronormativity. It assumes that the neurotypical experience is the standard that all should be trying to achieve. So when the Autistic patient enters the room, the therapist will first attempt to understand the Autistic person through the lens of neuronormative thinking, and then try to force the Autistic mind into a neurotypical box, and in turn apply their understanding of neurotypical mental health, onto a neurodivergent mind.

This is a fundamental problem because Autistics simply do not think and experience the world in the same way as a neurotypical. They can pretend to through masking, but as previously mentioned in this series, that comes with a great cost to wellbeing (Gray-Hammond and Adkin; 2021). How do we even know that Autistic people have the same experience of emotion? This would go some way towards explaining the difficulty Autistic people experience when trying to explain their inner world using neurotypical two-dimensional descriptors.

We are teaching children to label their feelings as happy/sad/excited, etc, when in reality, who experiences just one simple emotion at once? How many different types of happy or sad are there? Emotion is complicated, so assuming that there is a standard experience of emotion that we should all fit into (regardless of neurotype) is not only ignorant but blatantly ableist.

If we apply the theory of monotropism (Murray et al; 2005) to emotion, it becomes even clearer why standard psychological interventions are not appropriate for Autistics. Put simply, the theory of monotropism suggests that core autistic experience is related to differences in attention. It suggests that autistic people’s thinking falls into detailed “attention tunnels” in comparison to the attention of those with the predominant neurotype, whose attention is less detailed but more easily split over multiple subjects also described as polytropic thinking.

So if we’re focusing on an internal feeling or emotion, then typical language used to describe neurotypical emotion is not going to fulfil its purpose.

How many times have doctors misdiagnosed autism (especially in female presenting individuals) as Borderline Personality Disorder/ Emotionally Unstable Personality Disorder? How many times have Autistic people been prescribed medication for depression or anxiety when the problem was in fact Autistic burnout? Yet more evidence that neuronormative standards do not apply to Autistic experience.

This medical neuroprovincialism creates gaslighting. Applying neuronormative standards to Autistic people regarding emotional and mental health creates further suffering by further traumatising us, creating more masking, and in turn lowering our ability to cope and manage our mental wellbeing. Thus, we have the vicious cycle of patient-blame perpetuating itself around the premise that Autistics have an incorrect experience of the world, and that cycle makes our mental health worse more often than it improves it.

In truth, nobody experiences the colour green in the same way, at least not that can be proven. Experience of emotion is entirely subjective, two people rarely even look the same, let alone having an identical experience of their inner worlds. Solipsism tells us that we can not ever experience the world through another’s eyes or mind, yet here are the neurotypical masses telling us what we should or shouldn’t be feeling based on their own prejudiced standards of what they consider “normal”. Labelling us disordered when we can not fit into that restrictive worldview. To add insult to injury, they’re not even interested in asking us about our experience. They just push us through therapies that at best are mildly to moderately helpful, and at worst can retraumatise us.

We need to be consulted on what does and does not help us, outside of the setting of the neurotypical thought process. We need trauma-informed therapies (because we are hella traumatised by merely existing in society as it is). We need to guide our therapists on what we feel and experience by advocating for ourselves loudly and proudly, in a language that feels natural to us, instead of accommodating their lack of understanding. We need to present the idea that there is more than one way to experience feeling, and finally we need to accept that about ourselves and encourage others to do so.

Consciousness is not a one-size-fits-all. It is a dynamic and ever changing thing for the individual, and it is as unique as our DNA.

Bibliography

Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory of mind”?. Cognition, 21(1), 37-46.

Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: In the beginning there was trauma. Emergentdivergence.com

Kelly, A and Farahar, C. (2021) Autistics, trauma, & access to therapy: Angela Kelly educates Aucademy. YouTube (video below)

Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156. https://doi.org/10.1177/1362361305051398

NICE Guidelines (2013, updated 2021) https://www.nice.org.uk/guidance/cg170/chapter/recommendations#interventions-for-coexisting-problems

David Gray-Hammond 9 Comments
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