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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 1 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

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