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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 27 2023
AuDHD addicts don’t respond to shame the way you want them to: Here is why

I have written before about how How the shame cycle barricades us from recovery in terms of addiction. In particular, here, I think about people who are AuDHD. If you exist at that particular intersection of experience, there is an increased likelihood that you use substances to improve your own wellbeing. Where there is self-medication, there is an increased risk of addiction. Where their is addiction, there are people trying to shame them into quitting.

Autism, ADHD, and shame

Being neurodivergent usually comes with a level of shame. This is due to the fact that society uses neuronormativity to police how we think, feel, act, and emote. It is estimated that ADHD children receive around 20,000 negative or corrective comments by age 10. Let us not forget that if a child is AuDHD, then there is a risk that they have been exposed to harmful interventions such as ABA or perhaps even MMS to try and make them “indistinguishable from their peers”.

When we consider this with respect to AuDHD adults, we are literally creating a factory line that takes children and turns them into adults who believe that who they are is wrong, invalid, a failure, or subhuman. To be AuDHD is to be constantly told why you are not enough. I believe from this you can already see why we may turn to drugs and alcohol to feel better.

Why does shame not stop addiction?

Clockwise arrows move between the words “shamed by people” and “use to cope” around the word “addiction”.

Addiction is insidious. It creeps into your life and slowly dismantles it. Stripping away your sense of identity, your relationships, your economic stability. It slowly takes everything from you until it is ready to take you away from the world. Addiction is not a moral failing, and it certainly is not a choice. No one wakes up one morning and decides to give away their liberty in the pursuit of oblivion.

One of the reasons we seek that oblivion is because the pain we experience is so intense that we would rather feel nothing at all. Shame adds to this pain. It eats away at us, tells us we should hide and obfuscate those parts of us that need to be in the light. If open communication is the key to recovery, then shame is the barricade keeping us from it. For this reason, shame will only ever keep us heading back towards oblivion.

What helps AuDHD people recover from addiction?

As we have discussed. AuDHD people are already driven to conceal themselves from childhood. Driving that further by shaming their drug use only serves to entrench that more deeply. In order to recover, we need to be able to communicate our inner experience openly and honestly. We have to create environments where a more natural embodiment of our internal experience is not something that will be penalised. To consider it another way; we have to let people be themselves.

Before we can be ourselves, we have to know ourselves. This is why community connectedness is so very important. Aside from an overall reduction in minority stress, it allows us to learn about ourselves through shared experience with others. By engaging in natural communication and AuSociality, we learn what it is to be us, and how to improve our wellbeing. When we begin to feel good about ourselves, it becomes easier to tackle addiction.

There is no one-size-fits-all approach to addiction recovery, but I am certain that shaming AuDHD addicts will never achieve what you hope it will. If we want to save lives, we have to begin creating safe and nurturing spaces, not driving people back to the oblivion they already feel they deserve.

David Gray-Hammond 0 Comments
Aug 21 2023
Here are the reasons why CAMHS endangers Autistic children

If you believe that there are no issues with the way that Child and Adolescent Mental Health Services (CAMHS) treats UK Autistic children and young people, I would direct you to take a look at the ongoing petition that has over 200,000 signatures. That’s a fifth of a million people who have witnessed the failures and harms exacted on Autistic children and young people by a service that is meant to save them.

Something that I keep coming back to is that CAMHS as a service needs to do more than open it’s doors to our children. In it’s current state, CAMHS could do more harm than good. I very strongly believe that in order for CAMHS to be a fit place to support Autistic people, they need to change on a fundamental level. In light of this, here are some of the issues within the current system.

Safeguarding instead of mental health care

One of the most common stories that we hear surrounding CAMHS is families of Autistic children finding themselves being referred to safeguarding services within their local authority (LA). This has become a prevalent issue that can make accessing services feel hostile and dangerous. Given that parents of Autistic children are often disabled themselves, it seems pertinent to note the increased rate at which they experience Institutionalised Parent/Carer Blame (IPCB).

This highlights a significant issue with the move over to Single Point of Access (SPoA) referrals. There can be significant disparities from area to area in triage outcomes meaning that Autistic young people and their families often do not get access to the services they need.

Lack of knowledge around Autistic and neurodivergent experience

I have spoken at length about the impact that a lack of cultural competency among professionals can have. In particular I would highlight this article I co-authored with Tanya Adkin. It is impossible for professionals to be safe for Autistic young people while they are lacking essential knowledge that can only be found by engaging with the Autistic community.

Many of the professionals within CAMHS are working from outdated and stereotyped knowledge around what autism looks like and how best to support Autistic people. This lack of knowledge can and does endanger the health and wellbeing of our children and young people. It highlights a level of disdain for minority communities when they ask for professionals to learn from them and not from an outdated textbook.

Poor handling of children vulnerable to exploitation

This is a significant issue for Autistic young people. In particular I think of the case of Ben Nelson-Roux. This young person died a victim of exploitation due to multi-agency failure (as documented in the linked article). Had CAMHS had a better professional practice regarding neurodivergence and exploitation, his story may not have ended in tragedy.

We have to highlight here the power that CAMHS have in cases such as these. When CAMHS fail to take criminal exploitation seriously, it has knock on effects for the support they receive from all services involved. CAMHS as a whole needs to be significantly more skilled in this area due to it’s prevalence among Autistic demographics.

Defensive Practice

Defensive practice occurs most commonly when services are more concerned with metrics than people. Within CAMHS this often manifests in refusals for support, and labeling service users as “not engaging” when inappropriate approaches are used for neurodivergent young people.

This might also manifest as the overuse or inappropriate use of restrictive practices and deprivation of liberty. Again, this tends to arise from a need to meet targets and achieve certain metrics rather than meaningfully support young people.

Gate-keeping of services

This one is the whole reason we’re here, and fits in with the aforementioned defensive practice. When you don’t have the skills to support a neurodivergent person, you simply refuse them access to services. This gate keeping is deadly for some young people, and trust policies that allow for it to happen play a role in the disturbingly elevated suicidality rate for Autistic young people.

Autistic people experience a great deal of psychological distress in a world that is actively hostile towards them, and yet CAMHS fails to provide them with meaningful support. In many cases they fail to provide any support at all. If we want to see an improvement in the metrics that matter (for example, measure of quality of life), much of the current mental health system in the UK needs to be restructured. This will not be a quick campaign, but it will be effective.

Please support the ongoing campaign around CAMHS and Autistic young people by signing this petition and attending this protest.

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 18 2023
Five things that help me when I’m experiencing Autistic burnout

Autistic burnout can present itself in many different ways, not just the depressive state that observational models have taught us to expect. Despite assertions to the contrary, sometimes burnout is more than a need to withdraw.

Conceptualising Autistic Burnout

One might describe burnout as

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

Raymaker et al (2020)

Of course, due to the infinite possible interactions with one’s Self and environment, there are infinite ways that Autistic burnout can present. Raymaker et al (2020) go on to conceptualise the mechanics of burnout.

Figure taken from Raymaker et al (2020)

Using this, I can begin to explain the things that help me when I am experiencing Autistic burnout.

What helps me with Autistic burnout?

  • Sensory Input
    • A good sensory diet is helpful to myself. I use dark rooms with colourful lighting and star projectors. I also use an oil diffuser. Besides the typically expected sensory input, I might mention that physical activity that engages my proprioceptive sense can also help with waning interoceptive accuracy.
  • Nesting
    • I have discussed in a previous article my AuDHD habit of nesting. While having a sensory safe space is a part of this, what is also important is that this space is safe from intrusion by the outside world. Sometimes, I need space to think and process whatever is going on in my mind in order to function in a world that can be quite hostile.
  • Boundaries
    • This one follows on quite nicely. We have to not only understand our strengths and struggles, but also enforce boundaries that compliment them. Learning to say no can feel quite villainous at first, but only when we make space for ourselves can we properly energy account. It is okay to make space for yourself.
  • Trust yourself
    • As Autistic people, we are constantly invalidated and gaslit about our experience. It is vital that we learn to trust ourselves on matter that pertain to ourselves. Nothing will drain you quicker than constant self-management. It is also impossible to enforce boundaries when we believe they are uneccessary or an overreaction.
  • Slow and Planned transitions
    • Autistic people experience cognitive trauma when they are forced to rapidly disengage and re-engage with different tasks and demands (more on this here and here). It is important that we slow down our transitions during burnout as in my experience we are more prone to that cognitive trauma during these time.

Final thoughts

As with everything, different things will help different people. The most important thing is that we treat ourselves with the same kindness that we would another. Humans of any neurocognitive style were designed for the cognitive equivalent cruising speed, it is not sustainable to move at maximum velocity without a break.

More than anything, you need to know that Autistic burnout is a logical consequence of our intensely hostile world. You are not worth less for struggling, and you are not alone.

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 10 2023
“How do I help my Autistic child?”

I have recently found myself being asked quite often about how parents can help their Autistic children. It sounds like a simple question, but as with most things in parenting, there is no simple, one-size-fits-all approach to parenting. I can, however, tell you what helps me support your Autistic child in my day-to-day professional life.

Monotropism

This has become the theoretical lens through which most of my work functions. Part of my day job is working to support Autistic young people, many of whom are quite traumatised by the wider world, in particular the mainstream education setting. So, what’s the deal with monotropism?

Monotropism as a theory works to explain a great deal of Autistic experience. Through understanding monotropism, I have come to understand a great deal. One of the main ways this influences my work is that it directs me to use gradual transitions between tasks and to know that abruptly changing activities is cognitively traumatic.

For people who want to know more about monotropism, I highly recommend reading the following articles.

If you engage better with video content, try this one

Monotropism 101

The Double Empathy Problem

Autistic children experience a great deal of communication invalidation, and this contributes to the clustered injustice that befalls so many Autistic people. Essentially, Autistic people are told that their communication style is a deficit, a flaw to be erased. We have to recognise and validate the communication of Autistic children if we want to be a part of their world.

In terms of reading, I really recommend A mismatch of salience By Damian Milton. For our video lovers, I have this offering-

The weaponisation of Autistic communication

Burnout and energy accounting

This is a big one. Autistic people living beyond the limits of their cognitive resources for extended periods of time can and will experience Autistic burnout. Burnout can cause a great deal of complications for the Autistic child. We have to work with them to make sure they have the resources they need to cope with the demands in their life (and yes, Autistic children have a lot of demands in their life).

Essential reading for this topic-

And of course I have a video for you-

Atypical Burnout

Interoception

Believe it or not, there are not five senses. There are eight. They are visual, tactile, gustatory, olfactory, audio, vestibular, proprioception, and interoception. While having a good knowledge of Autistic experiences of all of these will help you, interoception is a big one. Interoception is the sense that tells you what is happening in your body. Whether you need the toilet, are hungry, or feeling anxiety, all of this is informed by your interoceptive sense.

When working with an Autistic child, I have to remember that sensory differences mean that they may be alexithymic, preventing them from answering questions about their emotional state.

Reading around this topic that is important follows-

Masking

Masking is perhaps one of the most commonly misunderstood aspects of Autistic experience. It’s best understood by considering it a projection of acceptability; we show people what we think they want to see. This is why your Autistic child might be fine at school and then completely meltdown at home. We have to be aware that Autistic children often don’t feel safe fully expressing themselves.

Anyone wanting to know more about masking should read the following-

And here is a video!

Autistic Masking in my experience

These are all essential foundations that come together to create the competency that people need to start to start understanding the individual experiences of Autistic people. Remember, you won’t get it right every time. You won’t learn everything overnight. What matters is that you spend time in and around Autistic community and culture. Nothing will teach you better how to support your Autistic child better than Autistic adults.

Katie Munday and I are currently co-authoring a blog series together that looks at the experience of being an Autsitic parent. Find it here.

If you want to learn more about the challenges that Autistic people and their families face, check out the Creating Autistic Suffering series I co-author with Tanya Adkin. Find it here.

Don’t forget to check out my books here!

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
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