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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
May 3 2023
Children are being seriously injured for displaying “challenging behaviour”

All statistics mentioned in this article are taken from The ICARS Report into the use of restrictive practice in England, information take from The Equality and Human Rights Commission, Human Rights as detailed by the United Nations, and The Royal College of Psychiatrists.

There is a growing belief in the world that the use of corporal punishment, ranging from smacking a child through to more archaic forms of punishment, are unacceptable. While this is a good thing, to me it shines a light on the hypocrisy that is currently at play.

While remaining a global phenomenon, restrictive practice is still widely used, and in particular it can be found in specialist settings where people work with disabled students who more likely than not have experienced a great deal of trauma. Autistic people in particular are likely to be traumatised, this is because of the way that the world is designed. There are myriad ways that the world does harm to us.

This becomes deeply problematic when we consider the way that restrictive practice takes place. While used as an intervention for perceived “challenging behaviour”, it would be more accurate to view restrictive practice as an intensive intervention for dysregulation.

Allow me to take a step back and consider the nature of such practice. Restraint is the use of techniques that restrict a person’s ability to act freely. Often when we consider such techniques, we imagine people being held to the floor, but we can see not just the use of mechanical restraints, but also chemical restraints in healthcare settings. Such restraints are employed by the use of drugs that inhibit a person’s ability to act freely.

As you can see from the off set, restrictive practice represents a significant issue in the human rights and ethics of working with disabled people. The hypocrisy lies with the people who speak out against corporal punishments while employing the use of restraint. While such practices are supposed to be “last resort”, 78% of those included in the ICARS report reported that their child had been a victim of restraint prior to the age of 10 years old.

Another concerning statistic is the number of children who were harmed by restraint. The ICARS report found that 97% of respondents were harmed, while restraint was only recorded 59% of the time (breakdown of statistics below). My interpretation of this data is that restraint is being performed dangerously, in a punitive context, and improperly recorded.

Taken from The ICARS Report into the use of restraint in English schools

The implication of children experiencing punitive restraint flies in the face of a society that is trying to move away from corporal punishment. Such brazen abuse of the position of trust and power that schools are privileged to have is simply unacceptable. Children have died and been significantly traumatised by restraint. This is, quite simply, not a practice that should be occurring in this day and age.

We must also consider the fact that restrictive practice feeds into a self-perpetuating loop, in which the child is constantly being exposed and re-exposed to the trauma of restraint. Dysregulation creates challenges, which are approached with restraint, causing trauma that once again results in dysregulation. It is a self-fulfilling prophecy of sorts that is fueled by societies pervasive desire to assimilate children’s behaviour into an “acceptable” standard.

Taken from Centre for Mental Health

According to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the UK has made a commitment to create an inclusive education environment and protect disabled people from all forms of violence and abuse. I would challenge our governments commitment to this convention on the grounds that the punitive and improper use of restraint is a direct violation of both of these commitments.

According to a report made in 2018 for the UNCRPD, 75% of Autistic students, and 70% of those with a physical disability reported bullying in school, compared with 50% of those with no disability. How can we reduce interpersonal bullying among students peers in an environment where adults are actively harming children with restrictive practice? We have, in effect, normalised the mistreatment of disabled children on the grounds that disabled embodiment is a challenge to be intervened on rather than addressing issues with the wider environment that are creating traumatised and dysregulated children.

The Universal Human Rights Index specifically mentions concerns over the UK’s use of restraint on children, stating;

“The Committee is concerned that the State party is still using techniques of restraint that aim to inflict deliberate pain on children in young offender institutions, including to maintain good order and discipline“

UHRI (Accessed May 3rd, 2023)

This indicates that the UK government is failing in it’s duty to prevent torture and ill-treatment of it’s citizens. This raises further questions about the fact that this failure specifically pertains to disabled children, a notably marginalised group in our current society.

The truth of the matter is that children’s lives are being endangered, if not by the restraint itself, then quite possibly due to it’s correlation with the 9x increase in suicide risk seen amongst Autistic people (RCPSYCH, 2018) and the significant over-representation of Autistic people in demographics that have been victims of restraint.

Disabled people deserve compassion and equal access to the world. All of the time that we are holding the threat of dangerous restrictive practice over their heads, this has not been achieved. we need to create a world in which disabled people thrive, are not met with the threat of pain and violence. Restrictive practice needs to be seen for the toruturous practice that it is, and not normalised as a means of forcing the behaviour that institutions arbitrarily believe is acceptable.

Before you go, don’t forget to check out my books!

David Gray-Hammond 0 Comments
May 2 2023
Neuroqueering education through rhizomatic community networks

This article exists, in part, thanks to the ongoing discussions in my Discord server. You can join by clicking here.

When considering the pervasiveness of neuronormativity, nowhere is it more visible and prevalent than in the education system. Educational institutions place a great deal of pressure on students to engage with behaviour policies, uniform policies, curriculums; more so, they define not only how one should learn, but how one should embody that learning and the ways we think about that learning.

Schools are, for the most part, completely ill-equipped for students who can’t conform to the restrictive ideals placed upon them by a school and institution that functions as a machine, creating apostles of our neoliberalist economy. Far too many children are traumatised and subsequently excluded from their human right to education because of the normatively violent approaches of the education system.

So how might we subvert and redesign education?

I have spoken recently of rhizomes. Vast networks of points that are connected while remaining independent of each other in terms of their survival. Such rhizomatic communities take a post-structural approach to the creation of community and the sharing of knowledge by ditching hierarchical notions of milestones and targets and instead allow us to take an interest-led approach.

Allowing communities to form around mutual interest creates different points within the rhizome. Through exploration and knowledge exchange, intrinsic connections form through the understanding that all knowledge is inherently connected. This is the basis of how one might queer the education system.

By allowing people to engage with interests and learn through that which they are intrinsically motivated to explore, the natural connections between points in the rhizome can be used to expand learning into other areas while maintaining and interest-led approach. Such a world would have no need for institutional education as knowledge creation and sharing would be a community endeavour.

Everyone would be the educator and the learner.

Some may worry about the standard of education that a person can achieve outside of the traditional institutional structure; truthfully, how much of the knowledge you hold now was attained within the walls of a school? Most learning is community based. School systems offer a very limited basis of knowledge that often seems pointless thanks to a lack of context.

Education should not be reliant on normative standards of teaching. We should be empowering each other to share the knowledge that we gain over a lifetime. Such a world would take us away from the self-reliance of our current society while allowing us to retain our individuality. Through a rhizomatic network of learning, we create a multiplicity in our individual existence that can not be achieved within the confines of the institution.

For access to bonus articles from David, check out David’s Divergent Discussions. Click here for 50% off your first year.

David Gray-Hammond 0 Comments
Sep 7 2021
An open letter to parents of Autistic children regarding Spectrum 10k

Spectrum 10k, what is it?

Spectrum 10k is the latest research project to be announced by the Autism Research Centre at the University of Cambridge. It is a collaborative effort with the Wellcome Sanger Institute and the University of California Los Angeles. On the 24th of August 2021, the Spectrum 10k (S10k) research project was announced. You may have seen it on the news, it arrived with a lot of celebrity endorsement and media coverage. You may have also seen that there has been a major backlash from the Autistic community.

This is of huge importance to the Autistic community (and the organisations that have issued statements against it), a community that your child is a part of. Here’s why.

S10k want the DNA and medical records of 10,000 Autistic people, including our children. They claim that they will use this data to look into “the cause” of autism and associated conditions, which they have suggested will aid in diagnosis and treatment. On the surface, this may look like a great idea, however there are some extremely grave concerns about what this research will ultimately mean for our future.

Let us consider what it would take to improve quality of life for our children. It’s not in our DNA. We absolutely agree that improving diagnostic services would be of huge benefit, the state of diagnostic services currently is appalling, perhaps barely legal. Some areas have waiting lists of 3-4 years just to be seen. Once you have acquired a diagnosis, you receive a piece of paper and are sent on your way, without support.

What happens next?

You arrive at school with your piece of paper that says “Autistic” on it, because you have probably been told that there is no support without a diagnosis. However, we all know that with or without diagnosis, there is very little (or no) support. The entire country’s SEND system is in crisis right now, and everyone of us has felt that effect in our own homes.

Here’s what our kids need.

They need better training and understanding in services (led by Autistic people), smaller class sizes, more places in specialist schools, more CAMHS staff with smaller case loads. This is not an exhaustive list. These are things that the Autistic community has been advocating for, for many years.

Simply put, autism + environment = outcome.

The answer is not in our DNA, we are not defective, we are different, and we need different environments. A cat is a cat, not a defective dog.

Think about how much the S10k project must cost, literally millions, wouldn’t that money be better spent on the suggestions above? How many specialist school placements could be provided? How much training could be given? How much of a difference could that money make on the ground, in front line services, rather than in the hands of Cambridge academics with no concept of what life is like for parents and our children on a day to day basis? They have no idea how hard we fight just to get our child’s most basic needs met.

Speaking on the small issue of consent, what would you actually be consenting to? You would be consenting to your child’s DNA, to be used not only in this project, but also any future projects the S10k team want to give that information to, including your child’s medical records. They say that the DNA data will be anonymised, how is that possible? Our DNA is individual to every single person.

“There is no way we can ever say that a future political leader or scientist won’t use the research for eugenics”

Simon Baron-Cohen (S10k project leader) [Source]

This means, that this research, could possibly be used to prevent the birth of Autistic babies.

Now let’s talk about co-occurring conditions, these are conditions that commonly occur within Autistic people.

There are many co-occurring conditions, and the S10k project claims that it wants to identify genetic markers for them, supposedly to improve diagnosis and develop “targeted therapies”. Conditions such as epilepsy, Ehlers-Danlos Syndrome, and intellectual disability, etc. Lots of our kids have had genetic testing, scientists have been looking into this for years.

10,000 tubes of Autistic spit is very unlikely to even make a small dent compared to what has already been done in these fields.

So this means, they are either being very arrogant, or they are lying.

How is this work going to make changes in support provisions? Medicine? Healthcare? And therefore autistic well-being?

The answer, very clearly, is it won’t.

So what exactly are S10k trying to achieve here? Let’s look at the S10k team. At the front we’ve got Simon Baron-Cohen, a man who is largely responsible for research that perpetuates the myths that Autistic people have no empathy, or that we have “an extreme male brain”. This amongst other extraordinarily problematic fables. This is why diagnostic processes are so outdated and inaccurate. This is why thousands, if not hundreds of thousands of Autistic people are being misdiagnosed or completely forgotten.

Simon Baron-Cohen is responsible for the invalidation of entire generations of Autistic people.

Now let’s look at his team mate. An individual named Daniel Geschwind. Geschwind has a hugely questionable history, starting with the most heinous; his involvement with “Cure Autism Now”. He hasn’t even tried to hide that association.

It gets worse.

When speaking at a UCLA symposium in 2018;

“If we know the mechanism, then we can prevent it. Cure the autism”

Daniel Geschwind [Source]

They basically have an eleven strong senior leadership team, all of which are focused on identifying causes, cures, and collection of genetic data.

Once again, for the people in the back, the key to improving Autistic wellbeing is not in our DNA. It is in better services, improved understanding, acceptance, accommodation, and appreciation. They can find 10,000 Autistics to spit in a tube, but they couldn’t find Autistic people and their families to ask what they actually need right now.

And that is why we suggest #BoycottSpectrum10k.

This letter was a collective effort from the team at #BoycottSpectrum10k

For more information on this campaign, please follow our social media on Twitter, Facebook, Instagram, and TikTok.

To read our full joint statement and sign, please visit here.

For another article about the concerns of the Autistic community, click here.

David Gray-Hammond 7 Comments
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