neurodiversity - Emergent Divergence

Sep 11 2023

CAMHS have been contributing to the death of Autistic young people for over a decade

I was recently sent a BBC article regarding multiple deaths of Autistic young people occurring despite coroners issuing “prevention of future death” (PFD) notices. These notices are only issued when a person’s death is the result of systemic failings and are issued when changes need to be made in order to prevent future deaths. The BBC article looked through 4,000 PFD notices over the past 10 years, and what they found is harrowing.

What is the risk of suicide amongst Autistic young people?

According to the Royal College of Psychiatrists, Autistic children in the UK are 28× more likely to think about or attempt suicide compared to their neurotypical peers. This could be for a number of reasons, but I believe that trauma plays the biggest role in this. Autistic young people and adults experience traumatic events at a higher rate than non-Autistic people. From communication invalidation, to sensory trauma, even good old fashion gaslighting. Autistic people have a rough experience of the world.

It is unsurprising then that Autistic young people, whome some research estimates 94% are victims of bullying, so regularly experience such an inordinately high rate of suicidal ideation and attempts. We also have to consider that Autistic people often exist at the intersections of race, sexuality and gender, other disability, and class. As a result of this, their mistreatment may be compounded by multiple forms of marginalisation.

Why are CAMHS important to preventing the deaths of Autistic young people?

As mentioned previously, Autistic children and young people are significantly more likely to experience suicidal ideation or attempts. Where their is suicidal ideation, there is often psychological distress. I’m fact, according to the Mental Health Foundation; 7 in 10 Autistic people have a diagnosable mental health concern. From this, I infer that over two-thirds of Autistic children and young people need support from CAMHS.

Despite this very high rate of suicide and suicidal ideation, and mental health concerns, only around 10% of patients under CAMHS are Autistic. This represents a large disparity between the accessibility of services for Autistic and non-Autistic groups. This disparity is indicative of wider systemic failings in the support of Autistic children and young people and is supported by the BBC’s findings in PFD notices.

How are CAMHS failing Autistic children and young people?

In her Prevention of Future Death notice to NHS Kent and Medway, coroner Catherine Wood said Sammy fell during an “episode of high risk behaviour” and criticised the local authority and mental health services for “inadequate support”.

She also made it clear that it was “predictable that a similar incident may arise… if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe”.
Quote from the above linked BBC article

The BBC investigation found 51 prevention of further death notices that pertained to the deaths of Autistic children and young people. 51 may not sound much amongst a group of 4,000, but it is. According to the National Autistic Society, over 1 in 100 (1%) people in the UK are Autistic. Of the PFD notices investigated by the BBC, around 1.3% were Autistic. This indicates to me that Autistic people are better represented in deaths regarding systemic failing than they are in the general population.

The screenshot below elaborates on some of the reasons found that control used to the loss of Autistic lives:

The five key concerns identified by the BBC as repeated issues in the deaths of Autistic children and young people, read article here.

What does this mean for CAMHS and Autistic wellbeing?

As I have discussed in previous articles about CAMHS; it is not enough to simply get through the doors at these services. We need them to be restructured and invigorated with new life. In their current form, CAMHS is not fit for purpose. Too many Autistic children and young people are losing their lives, and those lives are at the feet of a CAMHS that has time and again failed to do what it exists to do.

Autistic children deserve the same chance at a happy and meaningful life as any other child. CAMHS are not enabling that.

Click here to sign the petition about CAMHS

Click here to see details of the CAMHS protest at Downing Street

David Gray-Hammond 1 Comments

Sep 5 2023

Reclaiming Neurofuturism: Autistic embodiment and the enactment of neurodivergence

When we seek to describe our Autistic and otherwise neurodivergent selves, we tend towards discrete categories and observable definitions of what we mean. However, to be Autistic is more than a diagnostic category; while Autism is a defining part of my experience, I also enact neurodivergence. My embodiment gives definition to what people mean when they use words like Autistic, ADHD, AuDHD, or Schizophrenic.

Performing Autism

Like any of the diagnostic categories that have been assimilated into my identity, I perform them much in the way a neurotypical performs neurotypicality. Unlike the diagnostic criteria that bestowed these identities on myself, my performance is not containable. Every word that passes my lips, every action that my body makes; my existence gives meaning to the word neurodivergent. We often hear:

“When you’ve met one Autistic person, you’ve met one Autistic person.”
Unknown Author

I, however, would go one step further. Through our embodied relationship to the Self, we become autism. In the same way, I have become ADHD, and I have become Schizophrenia.

Queering the diagnosis

Autism does not exist as a separate entity, it exists as the embodied performance of ourselves. We choose the meaning that our identity has. We don’t have to be the Autistic that everyone else expects; through our performance of Self, We can redefine what people mean when they use words like Autism, Autistic, or neurodivergent.

We are both the writers and the actors in the performance of our neurodivergence. It is our job to deconstruct the politicised Autistic identity and replace it with the embodied and fluid definition that one might only find within the Chaotic Self. To word it another way; if we perform autism, that performance will change and evolve with each interaction with our environment.

Concluding Remarks

This lays a significant responsibility upon us as both individuals and a connected community. If we are redefining the meaning of autism and neurodivergence, it is on us to ensure that its definition is neither exclusionary or repulsive. The meaning of autism is written on our bodies, and we choose the words that write it into being.

We must strive toward a future free of the dichotomous standard of “meets diagnostic criteria” and “does not meet criteria”. Only when we break free of our politicisation and medicalisation can we truly explore the endless possibilities of doing autism.

David Gray-Hammond 0 Comments

Sep 4 2023

Autistic people, energy accounting, and boundaries

In my day job, I talk to a lot of Autistic people. I mean a lot of Autistic people. One of the most common questions I am asked is how to better account for limited reserves of energy and cognitive resources. The answer sounds deceptively simple, but in reality, it can be a really complicated practice. I’m talking about the creation and maintenance of boundaries in Autistic people’s lives.

Why are boundaries so complicated for Autistic people?

As Autistic people, we have grown up in a world that doesn’t care for our boundaries. We are taught from a young age that our needs and wants do not matter and that we should live our lives for the comfort of others. This attitude is most pervasive when we look at the high rates of trauma in our community. We also can not forget the effect of being late-identified and the role of intergenerational trauma.

For many Autistic people, our earliest memories are of people denying our sensory needs, invalidating our communication styles, ignoring the very things that would help us participate more equally in a world not designed for us. This means that by the time we reach adulthood, we are much less likely to be willing to maintain our own boundaries.

What does ignorance of boundaries teach Autistic people?

Autistic people are often accused of overstepping boundaries, especially in childhood. I would point out to the casual observer that we expect Autistic children to give more to society than society is willing to reciprocate. We teach Autistic children that boundaries do not matter and then penalise them for lacking awareness of social niceties.

There is then the wider issue of Autistic wellbeing. Adults with poorly maintained boundaries will inevitably experience lower levels of wellbeing than people who are able to sagely self-advocate. Autistic people often spiral in and out of burnout, unable to sagely set boundaries that are vital to their energy accounting.

How does ignorance of boundaries effect Autistic identity?

One aspect of the importance of boundaries that is rarely talked about, but very important, is that of its effect on our sense of identity. In my own life a lack of clearly defined boundaries kept my queerness closeted for decades. Because I was not able to advocate for.myself to others, I could not do the internal advocacy work I needed in order to identify my queer identity.

No one talks about it, but when you have grown up being constantly invalidated, you absolutely have to advocate to yourself. We have to battle and dismantle the internalised ableism and normativity that has kept us trapped within societies definition of “us” rather than exploring what the means to ourselves.

How can Autistic people begin to maintain boundaries?

Autistic people can begin to identify and maintain boundaries through self-exploration. For some, this may be an isolated affair, while others may engage with peer mentorship. This is where a sense of AuSociality becomes important. By socialising Autistically with Autistic people, we can begin to learn what our Autistic profile is and, therefore, what our unique set of strengths and struggles are.

When we know who we are and what we need, we are in a stronger position to begin self-advocacy to the wider world, and subsequently, we can begin to improve our sense of wellbeing.

David Gray-Hammond 0 Comments

Sep 1 2023

What is the double empathy problem and how does it relate to autism?

Within the Autistic community, there is theory that we speak about as though it is commonplace in human lives. In part, this is the double empathy problem in practice. However, not all theory that we speak of is known by wider society. Thus, it is my intention to demystify a small part of that theoretical knowledge in this article.

What is the double empathy problem?

The double empathy problem is a theoretical basis to explain why people with vastly different experiences of the world find it difficult to empathise with each other. It states that individuals and groups with differing cultural and life experiences struggle to understand the experience of the other due to having no point of reference within that opposing worldview.

How does the double empathy problem relate to autism?

Autism is broadly viewed by the wider world as a diagnostic category. It has been framed as a disorder affecting social communication that is pervasive and lifelong in nature. Autistic people, however, see autism differently. Autistic people view autism as an abstract concept with the only tangible aspect of it being the existence of Autistic people. That is to say, autism does not exist, only Autistic people exist.

Within this worldview, being Autistic has been conceptualised as an identity bound within the remit of the neurodiversity paradigm. As opposed to being a disorder, being Autistic is a natural variation of the human mind that prevents Autistic people from performing neurotypically, i.e. we can not assimilate yo neuronormative standards.

Consequently, perceived deficits in social reciprocity and communication are, in fact, the double empathy problem in practice. Because we are a minority group, our ability to communicate and empathise with others is viewed as deficient as opposed to just “different”.

Why is the double empathy problem important to Autistic people?

The double empathy problem allows us to demonstrate the fundamental power imbalance between Autistic and neurotypical individuals and groups. Autistic people’s position as a minority group results in our existence being pathologised and medicalised, while neurotypical embodiment is seen as something to be desired.

The double empathy problem highlights the exclusionary and oppressive nature of neuronormative thinking while highlighting the issues with cross-cultural and cross-neurotype communication and social reciprocity. Thus, rather than view Autistic people as anti-social, and deficient in communication and empathy, it would be more accurate to say that we have differences in these areas.

Why are Autistic people different?

Due to differences in brain functioning, Autistic people experience and process information differently. As a result, Autistic people utilise and understand language differently, resulting in the evolution of an Autistic culture and sociality (AuSociality). These fundamental differences in our use and understanding of language, sociality, and processing of information constitute a cultural divide that prevents neurotypical society from truly empathising with our experience.

Further Reading

Milton’s ‘double Empathy Problem’: A Summary for Non-academics

Dr. Damian Milton- The Double Empathy Problem Ten Years On

David Gray-Hammond 2 Comments

Aug 28 2023

Creating Autistic suffering: CAMHS advise “safe cutting” for Autistic children

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

This article contains detailed discussion of self-harm and CAMHS failures

Please Sign this petition regarding CAMHS refusal to see Autistic children and attend this protest if you can.

For those of you who are unfamiliar with Tanya’s work outside of this blog series, Tanya specialises in what services like CAMHS would call “complex presentations”. To consider it another way, Tanya is called in when professionals don’t know what to do. A lot of this work consists of working alongside independent social workers for the assessment, care and support planning, and delivery of short-term crisis intervention support to Autistic people who are experiencing complicating factors such as; criminal exploitation, co-occurring psychiatric conditions, disordered eating, “violent and challenging behaviour”, and self-injurious behaviours. David (in his professional life) is a qualified independent advocate who has spent quite some time deconstructing and shining a light on the failures of Child and Adolescent Mental Health Services (CAMHS). In this article we’re going to focus on a specific type of self-injurious behaviour in the form of cutting, and the guidelines surrounding it’s management.

CAMHS refusing to treat different people differently is a form of disability discrimination

This type of presentation is not unique to Autistic experience, however, there is an element of it that is unique and widely misunderstood by services. Services such as CAMHS are taking a one-size-fits-all harm reduction approach to cutting. The problem is that this does not take account of the sensory element of cutting for Autistic people. More and more often, what we are seeing, what we are hearing, is CAMHS advice which is essentially just to let Autistic children cut, but from a position of “safe cutting”. Let’s take a look at some of the NICE guidance in this area:

“During the psychosocial assessment, explore the functions of self-harm for the person. Take into account:

the person’s values, wishes and what matters to them

the need for psychological interventions, social care and support, or occupational or vocational rehabilitation
any learning disability, neurodevelopmental conditions or mental health problems
the person’s treatment preferences
that each person who self-harms does so for their own reasons
that each episode of self-harm should be treated in its own right, and a person’s reasons for self-harm may vary from episode to episode
whether it is appropriate to involve their family and carers; see the section on involving family members and carers.”
A portion of the guidance for self-harm within NICE guidelines, full guidance here.

If all of these things were fully taken into account in terms of Autistic children, “safe cutting” would never be the recommendation.

Interoception

Interoception is one of the eight senses, it is the ability to read and decipher internal bodily signals. This may include things such as; hunger, thirst, needing the toilet, emotions, but more importantly, it affects how we experience pain and injury. It’s almost a logical impossibility for Autistic children that are receiving the care of CAMHS to not have interoceptive differences. We know that 50-85% of Autistic people have alexithymia (interoceptive under-responsiveness in terms of emotion) (Click here for more information). We also know how bad things need to be for CAMHS to even accept a referral of an Autistic young person. Interoceptive differences have a high correlation with trauma and other mental health differences (Adkin, 2023). It stands to reason that Autistic people who meet a CAMHS threshold will have significant differences in their interoceptive sense.

Autistic children with interoceptive differences can not cut safely

What Autistic children need is the support that is outlined in NICE guidance. But because of a lack of competence (Adkin & Gray-Hammond, 2023) and understanding around interoception within the context of Autistic experience CAMHS have created dangerous situations for Autistic children and their families. When we look at suicidality rates in Autistic young people, rates of up to 28 times more than non-Autistic young people (Royal College of Psychiatrists, accessed 2023); does “safe cutting” play a role in this?

People who experience pain and injury differently, and dynamically, can not safely engage in self-injurious behaviours.

Why do Autistic people cut?

“Sensory disturbances are predictive of self-injury in Autistic people.”
Moseley et al (2020)

“there remains a concerning relationship between self-injury and suicidality which exists regardless of individual feelings on self-injury. This is consistent with the theoretical perspective that self-injury can be a “gateway” through which individuals acquire capability for lethal suicidal behaviors.”
Moseley et al (2020)

To summarise the above; A lot of Autistic people engage in self-injurious behaviour due to sensory difference. Self-injury among the Autistic population is highly predictive of suicidality.

CAMHS use “safe cutting” to guard resources

Advising safe cutting actually serves as a way of removing young people from CAMHS caseloads by normalising self-injurious behaviour. It offers false reassurance to parents that this is okay and that their child is not at risk, because CAMHS said so. It is a classic case of services abusing their perceived authority to gatekeep resources. “Safe cutting” advice is bypassing the NICE guidance in a way that removes the responsibility from CAMHS and places it onto the young person. If a young person suffers significant injury under the advice of “safe cutting”, it is the parents and carers who will be facing safeguarding investigations, not services like CAMHS.

So, How should CAMHS deal with this?

We need competent and effective assessment, care planning, and intervention delivery. Any approach to self-injury needs to take account of the Autistic young person’s sensory profile, and adapt it’s strategy to that. They need sensory-integration occupational therapy assessment and provision to address sensory needs. This is needed to address the sensory need that self-injury is meeting. They need social care assessments that are thorough and holistic, taking into account individual needs, educational needs, and medical needs. They need social workers that are competent in neurodivergent experience to ensure effective, multi-agency care and support planning and delivery.

What can you do if you have received this advice?

If you have been advised that “safe cutting” is the answer to self-injurious behaviour, please refer back to the linked NICE guidelines. Be prepared to follow formal complaint policies, when undoubtedly the guidance has not be followed, and ensure that you request occupational therapy input as per NICE guidelines.