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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

Tweet grom @simonharris_mbd

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 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 0 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.

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

References

Adkin, T. (2023). What is meerkat mode and how does it relate to AuDHD? Emergent Divergence.

Moseley, R. L., Gregory, N. J., Smith, P., Allison, C., & Baron-Cohen, S. (2020). Links between self-injury and suicidality in autism. Molecular autism, 11, 1-15.

RCP (Accessed 2023) Suicide and Autism, a national crisis. Royal College of Psychiatrists

Tanya Adkin 0 Comments
Aug 28 2023
Creating Autistic Suffering: The Self-Diagnosis Debate

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

There are many other nuances to Autistic self-diagnosis debate considering colonialism, racism, misogyny, and transphobia (to name a few) that others with more lived experience would be better placed to highlight. This article is not the whole issue (links at the end). We seek to address some of the most obvious points within the confines of a blog post.

There is a long-standing debate around the validity of people who self-identify as Autistic without formal diagnosis. One of the main arguments we see against self-identification is “what if they get it wrong?”. We would respond with “how can it be wrong?”. Autism is an abstract concept, the diagnostic criteria is fundamentally flawed, based only on white western boys who are displaying trauma responses. Autism does not exist as a tangible entity. You can’t touch it, manipulate it, you can’t interact with it. What actually exists is Autistic people.

So, what if it is wrong?

Notwithstanding the above point that self-identification cannot actually be wrong, lets just pretend that it can be for the sake of this next section. What if somebody identifying as Autistic is in fact experiencing a different flavour of neurodivergence? The rate of co-occurrence between Autistic people and other neurodivergences, conceptualised as “mental health conditions” is ridiculously high (more on that here). Tanya and David often joke that we have never met a ‘ready-salted’ Autistic; that is to say, we have never met an Autistic person that comes in only one flavour, without co-occurring conditions. This means that statistically, Autistic people are more likely to be recognised with co-occurring mental health differences than the neurotypical population.

“It’s trendy to be Autistic”

People who make the argument that self-diagnosed individuals are following a trend fundamentally misunderstand the neurodiversity movement. The neurodiversity movement is born from the collective frustration and mistreatment of neurodivergent people. No one is identifying as Autistic for fun. We come to this understanding because we are desperate to find relief from a world that has systematically oppressed and harassed us. Another misunderstanding here is around what being neurotypical is. We have a false dichotomy of ND vs NT, but neurotypicality is a performance, not a neurocognitive style (Walker, 2021). It is an ability to fit in with the world neuronormative standards. To consider it another way, if you identify with the Autistic label, you almost definitely can’t perform neurotypicality at the very least.

What is the neurodiversity movement and how does it relate to self-identification?

The neurodiversity movement is, at it’s core, a social justice movement. Those who identify as neurodivergent are situating themselves within the social model of disability. It is a political stance, one that places the person in opposition to the medicalisation of human minds. It is a movement that exposes the flaws of our current capitalist and neoliberal culture in the west that seeks to pathologise anything that does not conform to an attitude of profit-driven, self-reliant, neurotypicality. When we tell people not to self-diagnose, or identify outside of diagnostic models, we are inadvertently bolstering the psychiatric industrial complex that serves to medicalise dissent from our current systems of oppression. Therefore, by opposing self-identification, we are policing peoples political expression, which is a product of privilege and frankly makes you a bit of an arsehole.

The validity of the autism diagnostic criteria

Problems with the diagnostic criteria are well documented, we don’t have space to list every single issue, but there is more to be found here. What should we do about identification? Does this mean that nobody should ever be identified as Autistic? Absolutely not. There is research specifically on the flaws within the diagnostic criteria, so what do we have as an alternative? This is where Autistic-led theory comes into it’s own.

Specifically, the double empathy problem (Milton, 2012). Research tells us that Autistic to Autistic communication is more reciprocal and of better quality than Autistic to non-Autistic communication (Crompton et al, 2020). Research also tells us that neurotypical people perceive Autistic people unfavourably (Mitchell, Sheppard, & Cassidy, 2021). Botha (2021) evidences Autistic community-connectedness as a buffer against minority stress. To bring these points together, if you communicate more effectively with other Autistic people, if you find that neurotypical people dislike you for no reason, and if you find being part of an Autistic community massively reduces the minority stress that you experience; the research suggests that these things are far more effective at identifying Autistic people than flawed diagnostic criteria from old white men who studied little white boys.

To conclude

So, next time someone tries to tell you they are Autistic, try believing them. We don’t need old, stale, and pale neurotypicals to validate our internal experience of the world, and give us permission to exist. We are more than capable of knowing ourselves. If it helps us live more authentically, and reduces the stress we experience, then we should not be policing that. To speak against self-diagnosis is to parade one’s own ignorance for all to see.

If you think you’re Autistic, welcome to the community, we hope you find your home here.

Further reading

Racism- https://journals.sagepub.com/doi/10.1177/13623613211043643

Gender-https://www.forbes.com/sites/anuradhavaranasi/2022/08/31/autism-diagnosis-has-a-gender-bias-problem/

Transphobia- https://www.theautismcoach.co.uk/blog/transphobia-and-autism

References

Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).

Crompton, C. J., Sharp, M., Axbey, H., Fletcher-Watson, S., Flynn, E. G., & Ropar, D. (2020). Neurotype-matching, but not being autistic, influences self and observer ratings of interpersonal rapport. Frontiers in Psychology, 11, 2961.

Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.

Mitchell, P., Sheppard, E., & Cassidy, S. (2021). Autism and the double empathy problem: Implications for development and mental health. British Journal of Developmental Psychology, 39(1), 1-18.

Walker, N. (2021). Neuroqueer Heresies: Notes on on the neurodiversity paradigm, Autistic empowerment, and post-normal possibilities. Autonomous Press.

David Gray-Hammond 0 Comments
Aug 19 2023
Marginalised groups should not be responsible for ending stigma

When we think of stigma, we often think of awareness campaigns and personal disclosure of our struggles. On the face of it, these appear to be helpful in stigma reduction. However, as with all things like this, it is not nearly as simple as that. Autism has been the focus of many stigma reduction campaigns, but people are rarely Autistic as a standalone identity, and there are (more often than not) multiple marginalities within Autistic lives.

Autism is not the only sources of stigma in neurodivergent lives

When considering my own experience, one identity of mine that is particularly relevant to this conversation is Schizophrenia. Psychotic disorders have been positioned as the most “dangerous” of mental health concerns. People assume a poor prognosis with a high potential for violence.

Schizophrenia, in my opinion, is a good measure of saneism and ableism in society. Despite Schizophrenic people only having a modestly increased risk of violence, the media fails to report responsibly. Nuances such as the socioeconomic factors of violence in this population are rarely accounted for. In the same way, much of the stigma surrounding neurodivergence and other marginalised identities is driven by poor understanding of colonial oppression and sloppy reporting by journalists. When considering the sources of stigma in a person’s life, we have to consider intersectionality and minority stress.

Individualism and the stigma surrounding neurodivergence

When considering the role of individualism in the perpetuation of stigma surrounding neurodivergence, we have to first understand the role of psychiatry. The field of psychiatric medicine centres most neurodivergence ad “mental illness”. It places the issue within the body of an individual and requires them to “recover”. This individualisation is responsible not just for the coercion that occurs within the psychiatric profession. It is also responsible for the use of quack cures such as MMS and chelation “therapy” that do a great deal of harm.

The ableism and sanism that surround neurodivergence means that we are often coerced into harmful “treatment” or abused by those closest to us. We are dehumanised by stigma and forced to endure a world that views our existence as an abberation rather than a natural part of human diversity.

Why is it wrong to expect victims of stigma to tackle their own stigma?

When we consider marginalised groups, we have to consider that, for most of us, dismantling stigma is usually an expectation of free labour. Far too often, we are expected to expose the most vulnerable parts of ourselves to a world that, in most cases, will respond with vitriol. Raising awareness through vulnerability can be life threatening for many of us.

We also have to note the effect of privilege in stigma reduction efforts. White people such as myself are better able to expose the less acce0ted parts of themselves. If a BIPOC Autistic or Schizophrenic (considering my own neurodivergence) person were to lay bare their most hidden parts, their life could be endangered. For me, the stigma I face is dangerous, but not nearly as life-threatening as that of my further marginalised neurokin.

Conclusion

Marginalised people are left to raise awareness in a world that does not want to listen. It should not be us doing the work to dismantle stigma. Instead, those perpetuating it should be practising enough introspection to realise the conditioning that our neoliberalism world has used to dehumanised people such as myself. The expectation that we will do the work is fundamentally flawed in a world that does not care enough to practice insight.

Until such a time that wider society is ready and willing to see its own role in our oppression and marginalisation, we will continue to be mistreated. It should not be our job to tackle structural oppression while also trying to survive it. That is what most of us are pouring our energy into; survival.

David Gray-Hammond 0 Comments
Aug 16 2023
AuSocial: Towards an understanding of Autistic social culture

In my book The New Normal: Autistic musings on the threat of a broken society I have a chapter about Autistic social nature. Autistic people have widely been represented as being asocial, which is patently absurd. Autistic people have a rich and diverse social culture that has been ignored for a long time.

“One of the prevailing misconceptions is that as Autistic people we are overtly asocial beings. It is taken as common knowledge that we are the friendless weirdos who don’t understand social cues but can recite every train we’ve ever seen.”

Quote from The New Normal

A brief look at the research

Upon perusing the existing literature surrounding Autistic sociality, there is limited research into the social nature of our community. I might first start by situating us within the remit of The Double Empathy problem.

“It is also vital to remember how the double empathy problem as initially conceived was heavily influenced by sociological theory and that such social interactions happen within a continually negotiated and mutually constructed context”

Milton et al (2022)

The double empathy problem within the context of Autistic communication essentially positions us as having a different way of communicating and relating to language rather than a deficit. This difference arises from cultural differences and the relationships we have with the world power structures.

Due to structural oppression, our style of communication is often centred as an issue to be fixed.

“The notion that autistic people lack sociality is problematised, with the suggestion that autistic people are not well described by notions such as the ‘social brain’, or as possessing ‘zero degrees of cognitive empathy’. I then argue, however, that there is a qualitative difference in autistic sociality, and question to what extent such differences are of a biological or cultural nature, and to what extent interactional expertise can be gained by both parties in interactions between autistic and non-autistic people.”

Milton (2014)

So we now have a position whereby Autistic people do not lack sociality but instead experience a different form of sociality. This is what I refer to as AuSocialility or being AuSocial.

Despite indications to the contrary, the emphasis is often directed towards teaching Autistic people to learn non-Autistic social culture, despite this being uncomfortable or even harmful for us. Some research has argued that this should be the other way round.

“We recommend teaching not autistic people but rather non-autistic individuals about autistic sociality, in order to lower the burden on autistic interlocutors in cross-neurotype interactions and socialization”

Keates, Waldock & Dewar (2022)

What does being AuSocial mean?

Autistic sociality or the AuSocial presence of Autistic people can be conceptualised by the growing cultural practices of Autistic people. We have our own customs, use of language, moral values, and even recognise what would be the cultural equivalent of public holidays in the existence of things such as Autistic pride day and the reclamation of Autistic acceptance month.

Such cultural practices as body-doubling (a firm favourite for AuDHD people) where we use video platforms such as zoom to be present and parallel with others while working on separate tasks are a key feature of Autistic professional culture and sociality. One might also look towards our differences in the way we understand and process language as the formation of a dialect.

A key feature of AuSociality is the cultural practice of moral defence of minority groups. While the Autistic community is far from devoid of bigotry, there is a general atmosphere of protectiveness towards the multiply marginalised that isn’t experienced within the non-Autistic cultural space.

In summary, AuSocial culture is a complex and highly developed set of communication, language, and socialisation skills that can only be witnessed between Autistic people. Rather than being deficient in our social exchanges, we often achieve a great deal and naturally fight to try and improve the world for our neurokin.

Conclusion

Autistic people, like most humans, are inherently social beings. Despite testimony to the contrary (usually by non-Autistic professionals and researchers) we have developed our own AuSocial culture that stands diametrically opposed to those who would label us as asocial. Such cultural practices as those within the Autistic community serve to diminish the burden of existing with in a systemically violent society and serve an important protective function for our wellbeing.

I invite people to add their own examples of AuSocial culture .

David Gray-Hammond 0 Comments
Aug 14 2023
How CAMHS tier system obstructs Autistic young people from accessing support

Child and Adolescent Mental Health Services (CAMHS) have, for a long time, failed to provide support to Autistic children and young people. When it comes to autism, there is perhaps no service more infamous for it’s failures than CAMHS. Despite this, every year more and more Autistic people try in vain to access the support they are legally entitled to, often having their situation made worse in the process.

The CAMHS Tier System

CAMHS is modelled on a system of tiers, with tier 1 being at the bottom of a pyramid that grows to tier 4.

healthyyoungmindsinherts.org.ukhttps://healthyyoungmindsinherts.org.uk

Tier 1 is where most people enter the system. They approach GP’s (for example) because their mental health is declining. This is where one of the key issues can first be witnessed. Diagnostic overshadowing.

What is diagnostic overshadowing?

Diagnostic overshadowing refers to a type of medical failure where a healthcare professional attributes a physical of mental health concern to a patients pre-existing diagnosis (in this case, autism). The Royal College of Nursing goes into more depth about it here.

Within this context, a GP may refuse to escalate a young person’s position within the CAMHS tier model because they believe, for example, that their anxiety is “a part of their autism”. Diagnostic overshadowing remains a significant issue not only because it obstructs pathways into support but also because it obscures the ability of researchers to investigate co-occuring mental health issues in Autistic people.

Tier 2

Tier 2 involves access to early help services, but for a lot of Autistic people, this looks like safeguarding concerns. Rather than provide mental health support, we enter into a world of parent/carer blame and systemic hostility. It is because of these institutional practices of moving the goal posts that so many Autistic people skip right over tier 3 and enter into tier 4 care.

Inpatient Treatment

I title this section with more than a hint of irony. As I mentioned in a previous article, 93% of under 18’s under inpatient treatment are Autistic, despite the Mental Health Act code of practice stating how inappropriate this particular setting is. The irony comes from referring to it as treatment. For many Autistic people, being an inpatient can mean spending years locked away from society for no better reason than the lack of appropriate resources in the community. Let us not forget the horrific abuses that Autistic people have experienced in inpatient settings.

How do we fix this?

Meeting a young person’s needs at tiers 1 and 2 or having more specialised resources available at tier 3 could help to mitigate these failures. Having appropriate knowledge within tier 1 services as well as less emphasis on safeguarding in tier 2 could have a significant positive impact on the wellbeing of our Autistic young people.

Tier 3, in particular, could benefit from services that specialise in Autistic presentations of mental health. I would argue that tier 3 should not just involve child psychiatry but also implement a roll out of peer mentoring programmes that employ knowledgeable Autistic people to work with young people around understanding their strengths and struggles, and subsequent boundaries. Until these things are done, CAMHS will remain unfit for purpose.

Click here to sign the petition regarding CAMHS refusal to see Autistic young people.

David Gray-Hammond 0 Comments
Aug 7 2023
CAMHS don’t just deny Autistic children support by not seeing them

Child and Adolescent Mental Health Services (CAMHS) are the main providers of mental health support for children and young people on the UK. Despite this, many Autistic people and their families find that they are turned away from these services because CAMHS are not equipped to work with us. Autism, it seems, represents a riddle they are unwilling to solve. However, CAMHS failure to support Autistic children is broader than gatekeeping access.

How far does CAMHS refusal to support Autistic young people reach?

To really answer this question, we have to consider the myriad ways that CAMHS has become an inappropriate service for the support of Autistic children.

  • A lack of competency around Autistic experience and presentation
    • In this context, I am talking about neurodivergence competency. This requires more than theoretical study of autism. To be competent in neurodivergent experience and culture requires us to be fully engaged with communities and participatory/emancipatory research. It requires us to have an intimate knowledge of the kinds of challenges that Autistic people face.
  • Poor diagnostic practice
  • Institutionalised Parent/Carer Blame
    • This is a significant issue. It ranges from the implicit blame that is assigned when parents/carers are sent on parenting courses to the explicit and life destroying use of accusations of Fabricated and Induced Illness (FII). This forms part of a wider pattern of defensive practice that aims to shift responsibility from the service into the family unit.
  • Crisis Driven Intervention

Collectively, this non-exhaustive list of failures set the scene for a service that can be actively hostile towards Autistic service users. The fallout of these practices and significant gaps in knowledge are broad in impact. Not only are we looking at the risk to the child, but also the collapse of entire family units.

When CAMHS mistreat and present hostility to young people, it is the entire family unit that suffers. What we are looking at is the systemic traumatisation of all who support the child or young person. For every young person failed by CAMHS, entire families are becoming potential mental health service users. For a country that speaks so often of the need to reduce expenditure, we are certainly making things more expensive when we fail a single service user so badly that we create multiple new ones.

Autistic children and young people deserve more than this, and so do their families.

Please sign this petition regarding CAMHS failures to support Autistic children.

Click here to get a ticket to David Gray-Hammond and Tanya Adkin’s seminar on Autistic burnout (9th August 2023 @ 7pm BST)

David Gray-Hammond 0 Comments
Aug 5 2023
CAMHS misdiagnosed my Autistic burnout and it endangered my safety

For anyone who has been following my writing recently, you will be aware that there is an ongoing campaign regarding the failings of Child and Adolescent Mental health Services (CAMHS). In particular, there has been a great deal of discussion around the fact that they will often refuse to see Autistic children and young people. Beyond this though is a pervasive lack of skill and competence among professionals working Autistic service users.

CAMHS failures don’t rest solely in the hands of under-trained staff. To understand the issues that present themselves, we have to consider the lack of resources and funding.

“There remains a clear disparity between adult and child mental health spending in England. CCGs spend
an average of 12.9% of their overall allocation on adult mental health services – approximately 13 times
more than on [children and Young People’s Mental Health Services]”

Office for the Children’s Commissioner (2019/2020 report)

This disparity means that staff do not have access to a robust budget that allows for in depth training on emerging knowledge around the Autistic experience. Much of the training that staff have access to is horribly outdated and biased towards deficit-based understandings of autism. Of course we have the Oliver McGowan Mandatory Training, but I am yet to find an Autistic person who thinks this training goes far enough or demonstrates the truly dynamic nature of being Autistic.

Autistic Burnout and CAMHS

When considering the understanding that CAMHS staff have around Autistic experience, perhaps one of the most misunderstood aspects of autism is that of Autistic burnout.

“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”

Raymaker et al (2020)

Burnout in Autistic people is often misunderstood as looking like depression, but like many aspects of being Autistic, it is dynamic and diverse in it’s presentations. Trying to quantify burnout within observational methods is like trying to quantify snowflakes. Each instance is unique in it’s own way, even though they all have some general similarities. Sadly, CAMHS staff often don’t even know burnout is an issue for Autistic people, let alone what to look for or how to support children and young people through it.

My own experience with CAMHS

Aged 15, I found myself no longer to attend school. After a series of traumatic life events, my mother found me sat in our living room rocking back and forth, unable to speak. I have written about how CAMHS nearly killed me, but there is more to that story. CAMHS had me labelled a school refuser. They failed to recognise that I was experiencing Autistic burnout. When they should have been supporting me, they instead empowered an abusive school environment.

I was forced to return to the same school environment that had destroyed me. I was bullied by staff and students alike. I dragged myself through my final months in that school, leaving with few GCSE’s and a distinct lack of trust for education and mental health professionals. CAMHS failure to support me as an Autistic person in burnout led to my own suicidality, self-harm, and ultimately addiction and psychosis. CAMHS has the opportunity to provide meaningful crisis intervention, but due to their lack of knowledge labelled me as depressed and difficult.

Autistic burnout is not depression

Admittedly, on the surface, burnout and depression can look similar. The withdrawal from others coupled with loss of interest in previously enjoyable activities are hallmarks of both in the standard sense. However anti-depressants will not end Autistic burnout any more than water will extinguish the proverbial chip-pan fire. When staff labelled me as depressed instead of burnt out, they signed me up for decades of medication and gave my school the power to drag me back into an environment that was killing me.

At a time when I needed support from a community of my peers, I couldn’t even access an accurate diagnosis, let alone discover the huge community of others like myself.

The current state of CAMHS

“CAMHS did not have the knowledge or the skills to identify or treat mental health problems in [Autistic children].”

Read & Schofield (2010)

If CAMHS staff are unable to accurately identify Autistic burnout, it is likely that many children and young people will receive incorrect diagnoses and subsequently inappropriate support. It’s not uncommon for Autistic people to recieve diagnoses of personality disorders and bipolar conditions; this could be because of a disregard and lack of knowledge around atypical burnout, and the diverse range of burnout presentations in general.

Not only are Autistic people being turned away from support, those who make it through the door are actually being made worse. This is not how Autistic people experience mental health support. Children and young people are building towards an adulthood that will already be complicated for them, why do we set them up to experience an even harder time? Our children are dying at the hands of CAMHS.

Please sign this petition to help make a difference.

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To learn more about Autistic burnout, please sign up for this burnout seminar by myself and Tanya Adkin (August 9th 2023 @ 7pm), free to Autistic parents.

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David Gray-Hammond 0 Comments
Jul 28 2023
Autistic Parenting: Supporting our Autistic children’s mental health when services won’t

This article was co-authored by David Gray-Hammond and Katie Munday

There is an ongoing crisis in services such as Child and Adolescent Mental Health Services (CAMHS) when it comes to Autistic young people’s mental health. Failing to support our Autistic young people can have a big impact on our wellbeing as parents as we watch our children go through the same systemic discrimination that we have often experienced ourselves.

Support for the child means support for the whole family

Seeing the invalidation and gaslighting that can take place when approaching CAMHS can lead to trauma responses in ourselves. Importantly, appropriate mental health support will provide support to the whole family. Family members of traumatised Autistic young people can experience their own trauma by witnessing what has been conceptualised as “challenging behaviours” (Munday, 2023; Gray-Hammond, 2023). Witnessing self-injurious behaviours can be a particularly upsetting experience, especially when these behaviours are used against families when they reach out for support. The medical model centres “problems” within the child rather than in the systems which fail to support them.

Failures by CAMHS to support Autistic young people can create an environment that has the potential to traumatise the entire family unit; not just the young person. Stewart et al (2017) indicated that PTSD may be more prevalent amongst parents of Autistic young people, who are less likely to approach services for support with their own mental health. Unfortunately, such research ignores the possibility of parents being Autistic and having their own previous trauma (Gray-Hammond & Adkin, 2021). Again, the blame unfairly sits with the Autistic young person who must take responsibility not only for their own mental health but that of their family members.

Institutionalised Parent/Carer Blame

Institutionalised parent/carer blame is a significant issue for Autistic parents (Clements & Aiello, 2021) with some going as far as experiencing accusations of Fabricated or Induced Illness (Gray-Hammond & Adkin, 2022). CAMHS have been known to refer families to safeguarding instead of providing support with mental health. Another approach is to send parents on parenting courses such as the Cygnet Parenting Program from Barnardos. In these cases, it is clear that a child’s mental health concerns are being blamed upon parenting styles as opposed to environmental issues. Saying nothing of the deficit based ideologies which underpin these programmes.

Parent/carer blame can be a significant source of trauma that may deter families from approaching services again in the future. CAMHS and other services are creating a hostile environment that excludes Autistic young people in more ways than simply refusing to see them. There is also an inherent misogyny in parent/carer blame with mothers taking the most accusations since the days of Bettelheim. There is also a great deal of invalidation from service providers for Autistic parents who are seen to be projecting their own issues onto their children.

Minority-stress is amplified by CAMHS failure to support Autistic young people

Minority-stress can be understood as the collective pressure of multiple areas of discrimination and ostracisation. This can include things such as discrimination in the healthcare setting (Botha, 2020). Stigma is also a major contributor to minority-stress (Botha & Frost, 2018), of which there is a plentiful supply within services such as CAMHS. This stigma affects not only the young person, but also their parents.

“Minority stressors such as victimization and discrimination, everyday discrimination, expectation of rejection, outness, internalized stigma, and physical concealment of autism consistently predicted diminished well-being and heightened psychological distress”

Botha & Frost, 2018

It has also been suggested that everyday discrimination goes hand-in-hand with an expectation of rejection (Botha & Frost, 2018) which can itself make accessing services like CAMHS incredibly triggering for Autistic parents.

In conclusion

Parenting an Autistic child who is experiencing distress due to their mental health is a traumatic experience. To be clear, this is not because of the child themselves, but because services like CAMHS are inherently hostile towards Autistic people and our families. Reaching out for support can cause more trauma, effectively isolating already marginalised families. The very services which are meant to support us often do us more harm. It is clear that CAMHS has a long way to go in order to support Autistic children and young people, and their families.

Click here to sign the CAMHS petition.

Check out this seminar (free to Autistic parents) on burnout by David and Tanya.

Find more information about CAMHS here.

References

Barnardos Parenting: Cygnet Parenting Program. https://barnardos-parenting.org.uk/

Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).

Botha, M., & Frost, D. (2018). Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population. Society and Mental Health, 10 (1).

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.

Gray-Hammond, D (2023) Challenging Behaviour: The weaponisation of Autistic experience. https://emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. https://emergentdivergence.com

Gray-Hammond, D. & Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. https://emergentdivergence.com

Munday, K. (2023) The truth about “challenging behaviour”. https://autisticltd.co.uk

Stewart, M., McGillivray, J.A., Forbes, D., & Austin, D.W. (2017). Parenting a child with autism spectrum disorder: a review of parent mental health and its relationships to trauma-based conceptualisation. Advances in Mental Health, 15 (1), 4-14.

David Gray-Hammond 0 Comments
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