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:
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.
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).
Competence among professionals is notoriously lacking when it comes to Autistic culture and experience (Gray-Hammond and Adkin, 2023). One study found that only 17% of Autistic young adults rated clinical services “very useful” (Crane et al, 2019). This in turn adds to the Double Empathy Problem. Therapists are not immune to this. We can see this again reflected in a petition asking CAMHS to acknowledge the existence of Autistic burnout.
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.
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:
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).
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.
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.
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