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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

I am an Autistic person, not a scientific phenomenon

Recently I have been reading Authoring Autism by Remi Yergeau. It has really been opening my eyes to the use of rhetoric in the construction of narratives surrounding Autistic people, and has very much inspired me to write this.

I am an Autistic person.

And yet the world treats me as a phenomenon, a peculiarity that needs to be studied.

Some of the world fears me, others adore me. Some care not for whether I live or die, while others fight for my existence. Most of them have one thing in common; they don’t trust me to speak for myself.

Autistic people are treated as clinical subjects. Repetitive and self-stimulatory behaviour. Clinical definitions for a deeply disordered non-human entity.

But I am human.

I am a person.

What they pathologise, is what makes my existence into a thing of poetry.

My repetitive hands trace the words that my mind can not find. My fingers type the stories that my mouth doesn’t speak.

What they call self-stimulatory, I call world altering. Where they reach for liquor to calm their mind, I find calm in the flapping of my hands, each beat like that of a birds wings.

Their description of sensory processing issues are actually a connection between my body and environment that I can not put into words. While their world is painful to me, I guarantee that they haven’t heard the electricity in the light bulbs sing.

They assume incompetence from all except themselves.

I am not a mindless automaton. I breathe the same air as you. I feel love and hate, pain and pleasure, I ponder my place in the universe. I see and hear how you talk about me.

I am an Autistic person not a scientific phenomenon. Let me write my own stories.

Creating Autistic suffering: In the beginning there was trauma

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

Trigger Warning: Some of the research quoted in this article contains person-first language or references to aspergers. While the authors do not agree with the use of such language, we must access the research and statistics available to us. We are also aware that some of the research cites Simon Baron-Cohen, unfortunately it is almost impossible to avoid him when writing this kind of article. There are also detailed discussions of various traumatic experiences including mentions of suicide, addiction, and mental health issues.

This website houses extensive writing on the topic of Autistic people and addiction, poor mental health, and suicidality, but we are yet to answer one very important question; how do autistic people end up suffering? The truth is that it requires falling dominoes of extensive systemic failure and trauma. In this series of articles, we hope to explore some of the reasons behind the development of poor outcomes in the Autistic population. The reasons listed in this article are non-exhaustive, and we would like to highlight that Autistic people are failed repeatedly throughout their lives.

This is alarmingly evident in the suicide rate for Autistic people. In a large-scale clinical study of newly diagnosed adults, 66% self-reported reported that they had experienced suicidal ideation. This is significantly higher than suicide rates among the general population of the UK (17%) and those experiencing psychosis (59%); 35% of those involved in the study had planned or attempted suicide (Cassidy, S. et al; 2014).

Trauma

Trauma is a significant predictor of poor outcomes in all people, regardless of neurotype. Since the 1900’s research has indicated that there is a strong link between psychological stress in childhood and adult behaviour (Zarse, E. M. et al; 2019). What we can infer from this, is that childhood trauma plays a role in the development of poor mental health and addiction in adults. The question that arises from that statement is; what constitutes trauma for an Autistic person?

There is an consistent theme in the Autistic community that there is no such thing as an untraumatised Autistic. Kieran Rose (2021) has discussed previously how the diagnostic criteria is based on trauma behaviours, rather than Autistic experience. David Gray-Hammond (2020) has also discussed how current diagnostic criteria is based on Autistic people in distress, and as we move towards a world where Autistic people are better supported and accommodated, the criteria will need to change.

There are strong well evidenced links between autism and PTSD, and links between PTSD and addiction, yet for some reason no one seems to connect the dots. There is also significant evidence of a connection between autism and poor mental health and wellbeing, and connections between poor mental health and addiction. Again, no one seems interested in exploring that intersection.

So, what constitutes trauma in Autistic people?

First, we need to consider sensory trauma. Autistic people are subject to sensory trauma on a daily basis, it is not something that can be avoided in todays society, rather we are literally traumatised by living in a neurotypical world (Fulton, R. et al; 2020). Bearing in mind our sensory differences, this is something that is happening to us from birth.

We are experiencing trauma from birth. Some argue that this could possibly be from prior to birth.

We also experience significant sensory invalidation. Think about the number of times a child has said something is too loud, too hot, too busy; the amount of times that has been met with “don’t be silly”, “there’s nothing to be scared of”.

“Society invalidates the Autistic state of being, daily, hourly, minute by minute – every time one of those scenarios, plus a million more occur.”

Rose, K. (2018)

Autistic people are also at risk of ‘Mate Crime’. Mate crime is a partcular subset of hate crime where vulnerable individuals are targeted by people posing as friends in order to take advantage of and abuse the individual (Pearson, A. and Forster, S.; 2019). Dr. Chloe Farahar and David Gray-Hammond (2021) had a livestream discussion about Autistic people and crime that included discussion of mate crime, the recording can be found here.

“In a 2015 survey, 80% of autistic people reported that they had been taken advantage of by someone they considered to be a friend. This was a colossal leap from the already significant 48% which had been previously recorded and it illustrated a problematic truth: Autistic people make easy targets.”

Sinclair, J. (2020)

Unfortunately, mate crime is not just an experience of Autistic adults (Parry, H.; 2015).

A significant concern for Autistic people is bullying. Bullying can happen to anyone, but it is well known that it happens to Autistic people at a much higher rate.

“I really didn’t understand why kids chased me on the playground. All I know is that when they saw me, and they saw me talking to myself and rubbing my hands together and stimming, that I was all of a sudden “marked.””

Wise, M. (2019)

Physical violence and hateful slurs from peers is a common experience for Autistic people of all ages. Society itself does not cope well with the existence of diversity. It starts young, but only increases in frequency and severity as we grow up, it can turn into things such as financial and sexual exploitation.

Of course, we can not discuss Autistic trauma without reference to behaviourism. For decades, “therapies” such as ABA and PBS have traumatised Autistic people. In fact, in the UK, SEND support is designed around making an Autistic person behave in a neurotypical manner. Considering this, is it any surprise that Autistic people walk away from these experiences with a great deal of trauma (Adkin, T.; 2021). We are literally being taught that who we are is wrong, and that our needs and wants don’t matter.

Often Autistic communication is invalidated because we do not communicate in the same way as non-autistic people. Many of us are non-speaking, communicating through AAC and similar. Many of us also have co-occurring conditions that make spoken communication a challenge. Autistic people communicate differently, we know this because it’s medically defined as a social communication “disorder”. What constitutes a disorder is defined by the medical model of disability and autism research. Difference is always assumed to be less, this is reflected in the systemic ableism and the insistence that different communication is some how less valid.

Many people have thought that they knew me, but see me in light of my mute mouth and wrongly understood that I think and feel nothing. People are too blind to see the person that I am behind my happy smile.  I feel that I am loving and kind and also know that I am empathetic and thoughtful, with feelings that can overwhelm my mind and then they cause me to act like an utter fool.

Hernandez, P. (2021)

We may not know how to communicate what is happening to us, we may have tried to communicate but it is misunderstood by the people around us, we may have experienced so much communication invalidation that we just stop trying. This can be particularly true of people who do not communicate using mouth words, especially because society has perpetuated a myth that non-speaking means non-thinking. What ever way you look at it, Autistic communication is considered less valid. Often, being Autistic can be used as a reason to cast us out.

All of this means that many Autistic people will isolate themselves from the world, and that isolation starts from a young age. Mazurek, M. O. (2014) stated that greater quantity and quality of friendships were associated with decreased loneliness in Autistic adults. Here’s the problem, Autistic people are in the minority. We do not have access to community as children, especially if we are pushed through a mainstream institution. Even if there are other Autistic people in that class, we do not know what it means to be Autistic.

The double empathy problem tells us that we have better interactions and quality of relationships with other Autistic people as opposed to neurotypicals. Autistic and non-autistic people exist in two different social contexts (Milton, D.; 2012).

“…double empathy problem’ refers to a breach in the ‘natural attitude’ (Garfinkel 1967) that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning”

Milton, D. (2012)

This disjuncture between Autistic and non-autistic communication can be traumatic for the Autistic person (Milton, D.; 2012).

Finally, we need to talk about restraint and seclusion. There are many different forms of restraint and seclusion, but each one of them teaches us from a young age that we do not have autonomy. It teaches us that our communication is not valid, that when we react to situations that we find overwhelming or distressing, we get punished.

An ABA practitioner physically holding our hands still, is a form of restraint.

But restraint has a darker side. As an example, we might look at the case of Max Benson, a 13 year old Autistic child who died as a result of being restrained for over two hours (Vance, T.; 2019). This isn’t just a problem in the USA though, it is happening in the UK also. A 12 year old Autistic child was restrained and handcuffed by police on his first day of secondary school, he was 5ft tall, and multiple police officers and staff used force to restrain him (Halle, M. and Cardy, P.; 2021). I think it is clear why this is traumatic for Autistic people.

Every school in the UK has a restraint policy. Sold as being for “everyone’s safety” while in fact it remains state sanctioned abuse. We have toddlers being restrained into preschool, into environments that cause them sensory trauma. Parents are told “they’re fine once they’re in” by people who have no understanding of masking. If you’re too big to be physically restrained, they use chemical restraint.

David Gray-Hammond (2020) writes of his experience as an undiagnosed Autistic person in a psychiatric ward. He discusses how, due to being a large man, staff chose to chemically restrain him with a heavy regime of antipsychotics and sedatives, rather than address the issues that were causing him distress.

It’s not just adults that are victims of chemical restraint, children under the age of 10 years old have been prescribed antipsychotic medications because it is cheaper and more convenient than meeting their needs.

Seclusion is a problem because it uses isolation as a form of coercion. Children and adults who do not conform to societies neuronormative ideals are secluded for long periods in isolation, seemingly as a punishment for not being “normal”. It’s inordinately unethical, and yet ethics don’t seem to apply when the victim is neurodivergent.

What does all this lead to?

Truthfully, it leads to suffering. Dr. Nick Walker put it best during her session with Aucademy.

Walker, N. (2021)

The next piece in this series will explore the systemic failings in identification and lack of accessibility.

Tanya Adkin

As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives.

I have worked within the voluntary sector, starting within the disabled children’s service, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.

For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.

I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way.

With experience, passion, and an individualised approach in close collaboration with families, I help them work towards holistic child and family-centered solution

Bibliography

Adkin, T. (2021) Behaviourism damages Autistic children. tanyaadkin.co.uk

Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 1(2), 142-147.

Farahar, C. and Gray-Hammond, D. (2021) Autistic people and crime. Aucademy. YouTube.

Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory Trauma: Autism, Sensory Difference and the Daily Experience of Fear. Autism Wellbeing CIC.

Garfinkel, H. (1967). Ethnomethodology. Englewood Cliffs.

Gray-Hammond, D. (2020) Autism and the future of diagnostic criteria. emergentdivergence.com

Gray-Hammond, D. (2020) My experience of restraint in a psychiatric hospital: This is not a love story. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com

Halle, M. and Cardy, P (2021) ‘Overreaction’: Autistic son handcuffed by police on first day of term at Notts academy. Nottingham Post

Hernandez, P. (2021) Who am i? nottootrapped.wordpress.com

Mazurek, M. O. (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism, 18(3), 223–232. https://doi.org/10.1177/1362361312474121

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

Parry, H. (2015). Shocking rise of «mate crime»: How children with autism or Asperger’s are being bullied, abused and robbed by so-called friends.

Pearson, A., & Forster, S. (2019). Lived Experience of Friendship and Mate Crime in Autistic Adults.

Rose, K. (2018) An Autistic Invalidation. theautisticadvocate.com

Sinclair, J. (2020) Autism exploitation: How to spot it and how to make it stop. autisticandunapologetic.com

Vance, T. (2019) #ShineOnMax Community-wide Candlelight Vigil for Max Benson, Sunday November 17. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com

Walker, N., Farahar, C., Thompson, H. (2021) What is neurodiversity & why’s it important? Nick Walker with Chloe & Harry: Aucademy in discussion. Aucademy. YouTube.

Wise, M. (2019) The long term impact of bullying. Neuroclastic. Neuroclastic.com

Zarse, E. M., Neff, M. R., Yoder, R., Hulvershorn, L., Chambers, J. E., & Chambers, R. A. (2019). The adverse childhood experiences questionnaire: two decades of research on childhood trauma as a primary cause of adult mental illness, addiction, and medical diseases. Cogent Medicine, 6(1), 1581447.

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