The following extract is from a recent practitioner article on autistic women and self-injury, and how to provide support with coping within a Low Arousal framework. The full article can be accessed here.
Abstract
Self-injury (SI) is a relatively common mental health concern. Despite the high prevalence of SI in the autistic community, this particular form of distressed behaviour appears to be widely misunderstood by services, especially if presented by women. In this article, the author aims to describe the Studio 3 approach to assessment of and intervention in SI, drawing from the professional experience of supporting autistic women and the application of the Low Arousal Approach.
Introduction
Self-injury (SI) is a form of behaviour of concern presented by people who have difficulties coping with distress (Taylor et al., 2018). The behaviour is sometimes characterised as an intentional attempt to cause harm to oneself to reduce emotional distress and dysregulation (Klonsky, Victor & Saffer, 2014). SI may take many forms, often as non-suicidal self-injury, such as cutting, scratching, burning, hitting and headbanging. An individual may engage in several forms of SI.
Studies show that the prevalence of self-injury in the autistic community is high, and that it is a relatively common mental health concern (Maddox, Trubanova & White, 2017; Mosley et al., 2019; Licence et al., 2019), with some studies reporting up to 50% of autistic adults having a history of SI (Maddox, Trubanova & White, 2017). SI displayed by the autistic population may be repetitive and stereotypic in nature (Licence et al., 2019). A person displaying SI may not be in control or even aware of engaging in such behaviour.
Literature highlights several factors associated with an increased risk for self-injury, such as differences in communication (Chiang, 2008) and intellectual disability (Richards et al., 2012). Additionally, co-morbid mental health difficulties, such as depression and anxiety, have been found to increase the risk of SI (Cassidy et al., 2014).
Some studies have found that a later diagnosis of autism can increase suicidal ideation (Cassidy et al., 2014) although relatively little is understood about these mechanisms. Gender may also be linked to a higher incidence of SI. Maddox and colleagues (2017) found higher rates of SI for women. While other studies have not replicated these results (Licence et al., 2019; Mosley et al., 2019), in our clinical experience at Studio 3, we have noted an increased number of referrals regarding women who present with SI. Many of these individuals have received a late diagnosis or are undergoing a diagnostic assessment for autism via Studio 3. We have observed a pattern of autistic women with significant difficulties frequently attracting multiple diagnoses.
This may be due to the fact that women tend to be diagnosed significantly later than males (Benevides et al., 2020). Oftentimes, other diagnostic labels are explored to explain the difficulties these women experience. Late and inaccurate diagnoses may delay access to autism-informed support and services. Consequently, autistic women are at higher risk of poorer mental health, trauma, and distress. There is an emerging understanding amongst practitioners that women tend to be labelled not with autism as a primary diagnosis, but other conditions such as emotionally unstable personality disorder (EUPD) and ADHD. In addition, particular behaviours may overshadow and mask autistic features. Most notably, there are consistent studies which show a strong association between eating disorders and undiagnosed autism.
Despite self-injury being a significant difficulty, autistic individuals report that services struggle to support these individuals (Camm-Crosbie et al., 2018). SI in autism is an under-researched and poorly understood area of need (Cassidy & Rodgers, 2017). Furthermore, it has been highlighted that the experiences of autistic women need closer attention (Taylor & DaWalt, 2020). In this article, the author discusses their experiences of assessing and supporting autistic women who self-injure. The information presented reflects the author’s views based on their professional experience and practical application of the Low Arousal Approach (McDonnell, 2010).
Assessment
Like any other distressed behaviour, self-injury is multifaceted in nature (Duffy, 2009). Consequently, a comprehensive assessment is needed to establish the functions and maintenance factors of the behaviour. Traditional functional assessments of SI and other behaviours of concern tend to focus on reinforcement theories. These assume SI is maintained by gaining a reward or removing an unpleasant stimulus based on exhibited behaviour (Iwata et al., 1994). However, it is commonly agreed that whilst one reinforcer may be implicated in the onset of SI, maintenance of SI may be influenced by different and multiple factors.
Analysing antecedents, behaviours, and consequences tends to help gain an understanding of triggers and reinforcements influencing occurrences of SI. However, in the author’s opinion, these assessments provide a superficial understanding of incidences of SI. As Low Arousal Practitioners, we tend to look ‘beyond the behaviour’ and focus on examining the relationship between occurrences of SI, heightened stress, and coping abilities (McDonnell et al., 2015). Stress and trauma are associated with self-injury. Understanding these mechanisms is essential to developing empathic and appropriate responses.
Stress
Stress is a natural response which informs us of the dangers in the environment and regulates alertness levels throughout the day. Stress is ever-present, and most people have developed a way of managing it. According to the transactional model of stress and coping (Lazarus & Folkman, 1984), difficulties coping with stress present when the stressor exceeds personal resources. This could be influenced by the interactions between an individual and their environment (Lazarus & Folkman, 1984, p. 19):
“Psychological stress is a particular relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her wellbeing.”
Research has shown that autistic people generally have higher stress levels than neurotypical people. Autistic people often show elevated levels of the stress hormone cortisol in their nervous system, which is associated with higher levels of stress (Nason, 2014; Lopata et al., 2008). Additionally, when we consider the different experiences of autistic women, for example ‘masking’ (Hull, Petrides & Mandy 2020), we can better understand the stressful nature of the world around them. Social, sensory, interoceptive, and communication differences can make any environment overwhelming and stressful.
When social and environmental demands exceed an individual’s ability to cope, their stress can sometimes manifest itself in distressed behaviours which can be challenging for supporters. In these instances, behaviours of concern can be viewed as ‘maladaptive coping strategies.’ From the perspective of the diathesis-stress model, we can understand how lived experiences as an autistic individual and stressors in the environment can intersect with pre-existing vulnerabilities (Broerman, 2020).
Stress is, therefore, an essential factor to consider. We should closely observe any signs which suggest that an individual’s coping ability is impacted. SI, as previously mentioned, is a coping strategy, and although ‘maladaptive’ may be the only effective strategy the person has to regulate their distress. Consequently, an assessment should thoroughly examine potential stressors the person may experience, including:
Environmental factors - Is the environment meeting the person’s needs; for example, from a sensory and information-processing perspective?
Personal factors - Are the needs of this person being met? Consider their emotional, social, psychological, and physical well-being.
Interpersonal and systemic factors - Are the support systems around the person managing or experiencing stress and dysregulation themselves? This is incredibly important, as SIB tends to be emotionally challenging to witness.
Trauma
Trauma is another significant factor to consider when assessing self-injury. Research involving the autistic community has shown higher rates of PTSD symptoms than the neurotypical population (Rumball, Happé & Grey, 2020; Rumball et al., 2021; Haruvi-Lamdan et al., 2020). These figures are not surprising considering the stressful nature of navigating the ‘neurotypical world’ and other vulnerabilities associated with autism (Rumball, Happé & Grey, 2020; Kerns et al., 2022). The autistic population is at higher risk of experiencing traumatic life events such as bullying and physical, emotional, and sexual abuse (Reuben, Stanzione & Singleton, 2021).
We also meet women who may have been ‘traumatised by the system’ through a lack of autism-informed support. Such approaches may include frequent use of restrictive practices; for example, restraint and seclusion. Some of the individuals we support have difficulties coping and engaging with the services offered, partially due to a misunderstanding of their needs and how their autism manifests. Inevitably, this contributes to re-traumatising these women.
Self-injury may be an attempt to manage trauma and cope with trauma triggers, thus it is essential to consider individuals’ history and any traumatic events they may have experienced. This may help to create an understanding of SI, particularly if the behaviour is present or intensifies around specific triggering events. Consider:
Has the person experienced any traumatic experiences in early childhood [see Adverse Childhood Experiences (ACE’s) (Felliti et al., 1998)]?
Has the person been subject to physical, emotional or sexual abuse?
Have restrictive practices such as restraint, segregation, or seclusion been used to manage the person’s behaviour?
Are there any environmental factors that may trigger trauma? Consider sensory stimuli such as smells, noises, or sight of staff congregating in one area (may trigger memories of physical restraint/abuse).
Is the person grieving and struggling with bereavement or another form of loss?
Body Sensations/Interoception
It is not uncommon for people who self-harm to report that they often feel ‘numb.’ This is particularly true of individuals who routinely cut. Understanding our own body sensations, from our heart rate to sensations of pain, is critical to answering why some people use self-injury to block out or create bodily sensations. The ability to be aware of our own body sensations is known as interoception (Mahler, 2016 a). Interoception is a sense responsible for signalling internal needs such as hunger, thirst and emotions, including stress (Craig, 2002). The ability to interpret internal cues has significant implications for homeostatic processes and emotional regulation (Craig, 2015). Interoception is considered the first step to recognising an arising need. Thus, interoception has received increased attention in recent research on emotional regulation, trauma, and developmental disabilities. Studio 3 practitioners routinely work with individuals who confuse emotional and physical pain. It is interesting to note that the emotional and physical pain pathways in the brain do appear to be intertwined and interlinked.
Given the sensory differences experienced by the autistic community, interoceptive awareness may vary considerably. For many individuals, this system can be either hyper or hyposensitive (Mahler, 2016a). In practice, this means that one may not feel the urge to act on a need, or may feel these cues at an intensified level. An insight into how one experiences and makes sense of their ‘internal world’ may significantly shape our understanding of self-injury’s manifestation and stress regulation, for instance:
Is the person able to recognise signs of building stress and emotions?
Is the person able to communicate this and look for support?
Is the person easily overwhelmed by their sensory experiences?
Can they recognise building stressors and know what to do when overwhelmed?
Written by
Karolina Morgalla
Studio 3 Assistant Psychologist
References
Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M. L., ... & Coughlin, S. S. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24(4), 822-833.
Broerman, R. (2020). Diathesis-stress model. Encyclopedia of personality and individual differences, 1107-1109.
Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2019[RM1] ). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism, 23(6), 1431-1441.
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.
Cassidy, S., & Rodgers, J. (2017). Understanding and prevention of suicide in autism. The Lancet Psychiatry, 4(6), e11.
Chiang, H. M. (2008). Expressive communication of children with autism: The use of challenging behaviour. Journal of Intellectual Disability Research, 52(11), 966-972.
Craig, A. D. (2015). How Do You Feel? An Interoceptive Moment with Your Neurobiological Self. Princeton, NJ: Princeton University Press. doi: 10.1515/9781400852727. ---------- (2002). How do you feel? Interoception: the sense of the physiological condition of the body. Nature reviews neuroscience, 3(8), 655-666.
Duffy, D. F. (2009). Self-injury. Psychiatry, 8(7), 237-240. doi: 10.1016/j.mppsy.2009.04.006.
Felitti, V.J., Anda, R.F., Nordenberg, D., Williamson, D.F., Spitz, A.M., Edwards, V., Koss, M.P., & Marks, J.S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventative Medicine. 14(4): 245-58. doi:10.1016/s0749-3797(98)00017-8.
Haruvi-Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism spectrum disorder and post-traumatic stress disorder: An unexplored co-occurrence of conditions. Autism, 24(4), 884-898.
Hull, L., Petrides, K. V., & Mandy, W. (2020). The female autism phenotype and camouflaging: A narrative review. Review Journal of Autism and Developmental Disorders, 7, 306-317.
Iwata, B. A., Dorsey, M. F., Slifer, K. J., Bauman, K. E., Richman, G. S. (1994). Toward a functional analysis of self-injury. Journal of Applied Behavior Analysis, 27, 197–209. (Reprinted from Analysis and Intervention in Developmental Disabilities, 2, 3–20, 1982)
Kerns, C. M., Lankenau, S., Shattuck, P. T., Robins, D. L., Newschaffer, C. J., & Berkowitz, S. J. (2022). Exploring potential sources of childhood trauma: A qualitative study with autistic adults and caregivers. Autism, 26(8), 1987-1998.
Klonsky, E. D., Victor, S. E., & Saffer, B. Y. (2014). Non-suicidal self-injury: what we know, and what we need to know. Canadian journal of psychiatry. Revue canadienne de psychiatrie, 59(11), 565–568. https://doi.org/10.1177/070674371405901101
Lazarus, R.S. & Folkman, S., 1984. Stress, appraisal, and coping. Springer publishing company.
Licence, L., Oliver, C., Moss, J., & Richards, C. (2020). [RM2] Prevalence and risk-markers of self-harm in autistic children and adults. Journal of autism and developmental disorders, 50(10), 3561-3574.
Lopata, C., Volker, M. A., Putnam, S. K., Thomeer, M. L., & Nida, R. E. (2008). Effect of social familiarity on salivary cortisol and self-reports of social anxiety and stress in children with high functioning autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1866-1877.
Maddox, B. B., Trubanova, A., & White, S. W. (2017). Untended wounds: Non-suicidal self-injury in adults with autism spectrum disorder. Autism, 21(4), 412-422.
Mahler, K. J. (2018). The interoception curriculum: A step-by-step guide to developing mindful self-regulation.
--------- (2016a). Interoception: The Eighth Sensory System: Practical Solutions for Improving Self-Regulation, Self-Awareness and Social Understanding of Individuals With Autism Spectrum and Related Disorders. AAPC Publishing.
---------- (2016b). Comprehensive Assessment for Interoceptive Awareness. Autism Asperger Publishing.
McDonnell, A. (2019). Reflective Journey: A Practitioner’s Guide to the Low Arousal Approach. Petersborough: Studio 3 Publishing.
---------- (2010). Managing Aggressive Behaviour in Care Settings: Understanding and Applying Low Arousal Approaches. Chichester: John Wiley & Sons Ltd.
McDonnell, A., McCreadie, M., Mills, R., Deveau, R., Anker, R. & Hayden, J., (2015). The role of physiological arousal in the management of challenging behaviours in individuals with autistic spectrum disorders. Research in developmental disabilities, 36,311-322.
McDonnell, A., Reeves, S., Johnson, A., & Lane, A. (1998). Managing challenging behaviour in an adult with learning disabilities: The use of Low Arousal approach. Behavioural and Cognitive Psychotherapy, 26(2), 163-171.
Nason, B. (2014). The Autism Discussion Page on the core challenges of autism: A toolbox for helping children with autism feel safe, accepted, and competent. Jessica Kingsley Publishers.
Reuben, K. E., Stanzione, C. M., & Singleton, J. L. (2021). Interpersonal trauma and post-traumatic stress in autistic adults. Autism in adulthood, 3(3), 247-256.
Richards, C., Oliver, C., Nelson, L., & Moss, J. (2012). Self‐injurious behaviour in individuals with autism spectrum disorder and intellectual disability. Journal of Intellectual Disability Research, 56(5), 476-489.
Rumball, F., Brook, L., Happé, F., & Karl, A. (2021). Heightened risk of posttraumatic stress disorder in adults with autism spectrum disorder: The role of cumulative trauma and memory deficits. Research in Developmental Disabilities, 110, 103848.
Rumball, F., Happé, F., & Grey, N. (2020). Experience of trauma and PTSD symptoms in autistic adults: risk of PTSD development following DSM‐5 and non‐DSM‐5 traumatic life events. Autism Research, 13(12), 2122-2132.
Taylor, J. L., & DaWalt, L. S. (2020). Working toward a better understanding of the life experiences of women on the autism spectrum. Autism. https://doi.org/10.1177/1362361320913754
Taylor, P. J., Jomar, K., Dhingra, K., Forrester, R., Shahmalak, U., & Dickson, J. M. (2018). A meta-analysis of the prevalence of different functions of non-suicidal self-injury. Journal of Affective Disorders, 227, 759-769.
Comentários