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Sep 18 2023
Creating Autistic Suffering: Interoceptive stimming or “challenging behaviour”?

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

TW: Discusses Challenging Behaviour, Disordered Eating, Sex and Related Activities, Self-Injury, and Victimisation

Recently David posted an infographic about interoceptive stimming. This proved to be a very popular topic and we felt it necessary to expand on this more via this series. In our experience working directly with Autistic individuals experiencing various levels of distress and crisis, what is often conceptualised as “behavioural” can be attributed to interoceptive self-stimulation.

What is interoception?

Interoception is the sense that tells us what is happening internally in our body. It allows us to identify our emotional and physical needs through the sensations we derive from them.

“So how exactly does interoception do its important job? This sense is hard at work all of the time, monitoring your entire body—body parts like your heart, lungs, stomach, bladder, muscles, skin, and even your eyeballs—and collecting information about how these body parts feel. For example, interoception collects information which helps your brain identify how your stomach feels: does it feel empty, full, gassy, nauseous, tingly or something else?
Your brain uses the information about the way your body feels as clues to your current emotion(s): are you hungry, nervous, tired, sick, excited and so forth?
Thus, at the most basic level, interoception can be defined as the sense that allows us to answer the question, “How do I Feel?” in any given moment….

…interoception is the very foundation of independent self-regulation.”

Mahler, (Accessed September 2023)

What is Alexithymia?

Alexithymia is the difficulty or inability to identify or “sense” one’s emotions. This then makes it difficult to articulate your emotional experience (Gray-Hammond, 2023). It could be thought of as a subgroup of interoception; emotions after all are an internal experience. Alexithymia occurs in around 50% of the Autistic population (Kinnaird et al, 2019).

What is stimming?

Also known as self-stimulatory behaviour, stimming is a repeated action that stimulates a particular sense, Autistic people may do this because the sense is under-stimulated, they may also do this because the sensory input is soothing and helps to keep them regulated. Hand flapping is probably the most commonly referenced, but it can include things like echolalia, listening to the same song on repeat, or spinning, etc. It can be self-injurious behaviour such as skin picking and head banging. Stimming is any repetitive behaviour that self-stimulates a particular sense.

Interoceptive stimming

Just in the same way that an autistic person may make repetitive movements or make repetitive sounds, it stands to reason that we may also engage in interoceptive stimming.

“repetitive, stimming behaviours, such as hand flapping and body rocking, are self-soothing and help to regulate the autonomic nervous system, which in turn generates interoceptive signals.”

Reframing Autism, 2022

What can interoceptive stimming help us understand?

Challenging Behaviour

Challenging behaviour are words that are commonly used to describe behaviour that is considered culturally unacceptable, societally abnormal, inconvenient, costly, or harmful and dangerous (Bromley & Emerson, 1995). Suppose that an Autistic person can not access or feel their emotions, much like when our proprioceptive sense is under-stimulated, we would seek proprioceptive input. We can also seek “emotional input”. Sometimes this can look like watching sad movies, or adrenaline seeking. However, sometimes it can appear as starting arguments or seeking to be dysregulated. This is often conceptualised as “challenging behaviour”.

Disordered Eating

“…there is a robust body of literature illustrating that alexithymia levels, both from a continuous and a categorical perspective, are elevated in individuals with eating disorders compared to healthy controls. Furthermore, individuals with eating disorders have specific deficits in identifying and communicating emotions.”

Nowakowski et al, 2013

Hunger is an internal sensation. Therefore, the feeling of hunger can be a form of interoceptive self-stimulation. Coupled with other sensory differences such as texture and smell aversion, this could look incredibly similar to disordered eating.

“…in the absence of accurate interoceptive representations, one’s model of self is predominantly exteroceptive.”

Filippetti & Tsakiris (2017)

What this means is that those with under-sensitive interoception will create their sense of self, and self-beliefs from external happenings, i.e. autism + environment = outcome. This is referred to as being suggestible or suggestibility. The way that neurotypical disordered eating is commonly addressed is as issues surrounding body-image. In Autistic people that are highly suggestible due to under-sensitive interoception, neuronormative ideas around the origins of disordered eating can create a self-fulfilling prophecy of body image issues when in fact, building the interoceptive sense may serve to be a more effective intervention; it may also avoid people internalising neuronormative self-beliefs that are not accurate.

Hypersexuality

Hypersexuality can also be a form of interoceptive stimming. Sex, masturbation, and related activities can serve as a vehicle for stimulating the interoceptive sense. Granted, many Autistic people have other sensory needs that makes engaging in intimate acts difficult. However, the other side of the sensory coin can be found in Autistic people who use sex and related activities to stimulate the senses and would traditionally be framed as being “hypersexual”. Coupled with suggestibility and social differences, and the rates of vicitmisation of Autistic people (Pearson et al, 2023), we can see why this can and does create a very big problem.

In conclusion

The above examples are just a snapshot of how understanding interoception can help us understand our Autistic selves and our Autistic loved ones. We must remember that for every Autistic person who is hyposensitive to interoceptive input, there are probably just as many who are hypersensitive. We can both seek and avoid interoceptive input. Sensory experience can also be dynamic dependent on our regulation levels and environment. What we seek on one day, we may avoid the next. By being aware of interoceptive stimming, we can be more aware of the need to find alternative routes to meeting interoceptive needs.

References

Bromley, J., & Emerson, E. (1995). Beliefs and emotional reactions of care staff working with people with challenging behaviour. Journal of Intellectual Disability Research, 39(4), 341-352.

Filippetti, M. L., & Tsakiris, M. (2017). Heartfelt embodiment: Changes in body-ownership and self-identification produce distinct changes in interoceptive accuracy. Cognition, 159, 1-10.

Gray-Hammond, D. (2023) What is alexiathymia? Emergent Divergence

Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89.

Mahler, K. (2023) What is interoception? kelly-mahler.com

Nowakowski, M. E., McFarlane, T., & Cassin, S. (2013). Alexithymia and eating disorders: a critical review of the literature. Journal of eating disorders, 1, 1-14.

Pearson, A., Rose, K., & Rees, J. (2023). ‘I felt like I deserved it because I was autistic’: Understanding the impact of interpersonal victimisation in the lives of autistic people. Autism, 27(2), 500-511.

Reframing Autism (2022) Dissociation in How Core Autism Features Relate to Interoceptive Dimensions: Evidence from Cardiac Awareness in Children – A Summary for Non-Academics. reframingautism.org.au

David Gray-Hammond 0 Comments
Sep 11 2023
CAMHS have been contributing to the death of Autistic young people for over a decade

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

What is the risk of suicide amongst Autistic young people?

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

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

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

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

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

How are CAMHS failing Autistic children and young people?

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

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

Quote from the above linked BBC article

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

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

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

What does this mean for CAMHS and Autistic wellbeing?

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

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

Click here to sign the petition about CAMHS

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

David Gray-Hammond 0 Comments
Sep 4 2023
Autistic people, energy accounting, and boundaries

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

Why are boundaries so complicated for Autistic people?

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

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

What does ignorance of boundaries teach Autistic people?

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

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

How does ignorance of boundaries effect Autistic identity?

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

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

How can Autistic people begin to maintain boundaries?

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

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

David Gray-Hammond 0 Comments
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 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 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 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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