Autism and Self Injurious Behaviours: A Brief Review of the Literature
By Alysha Kurji Chagani, Hilary Nelson, and Aisouda Savadlou
Faculty of Social Work, The University of Calgary
February 15, 2023
Executive Summary
Self-injurious behaviors (SIB) within neurodiverse populations are understood to be a reactionary behaviour in response to stressors such as those within physical, environmental or sensory contexts. They can lead to serious short and long-term impacts for individuals and their families and/or caregivers, and SIB are linked to decreased participation in community living.
Understanding SIB as a form of communication or means to influence an outcome, is important in considering the potential impact of and link with co-occurring issues such as medical conditions, discomfort or sensory issues. Such considerations may be particularly important for non or minimally-verbal autistic individuals. Multiple underlying causes for SIB in autism have been reported, ranging from physiological and biochemical issues to medical conditions to discomfort to social, sensory and environmental causes.
Research demonstrates that intervention can result in favourable outcomes. Various interventional approaches are briefly identified in this report, including pharmacological interventions that target contributing factors to SIB, and context-based interventions that address individual environments and the development of skills and processes to mitigate or address contributing environmental factors that may be influencing the occurrence of SIB. Developing a proactive plan to address SIB is imperative, importantly with service access that is commensurate to individual need. Carefully observing and seeking to learn the reason for, or the function of, SIB can help inform intervention.
Innovation and the use of multi-modal assessment, response and intervention, including emergent or future technology-based tools, are noted as offering potential in seeking to more concisely anticipate, avoid or mitigate SIB, and support the individual and their caregiver/family. While much is yet unknown, a targeted, holistic, and person-centred approach in supporting individuals is indicated in the literature.
Autism and Self Injurious Behaviours: A Brief Review of the Literature
Self-injurious behaviours (SIB) require a targeted, multifaceted, and multidisciplinary approach that corresponds with the associated complexity and challenges presented (Blanchard et al., 2021; Edelson, 2016; Leader et al., 2022). It is a phenomenon that is not used consistently within the literature, and may be conflated with self-harm.
Self-harm is a term that has historically been used to cover a broad range of behaviours that refer to people deliberately hurting their bodies. While SIB can be classified as a type of self-harm, it is important to understand the difference between SIB and other, more common forms of self-harm (e.g., cutting oneself due to emotional distress) in order to carefully examine the underlying purpose of a person’s behaviour, and seek to make a reasonable deduction regarding the appropriate supports and/or intervention.
Self-injury within neurodiverse populations is understood to be a reactionary behaviour in response to physical or environmental stressors. Self-injury most commonly manifests as repetitive or acute “behaviours that will likely lead to tissue damage, such as redness, bruising, open wounds and fractures” (Edelson, 2016, p. 14). Arms, hands, head, and wrists are the body sites frequently impacted by SIB in autistic individuals (Moseley et al., 2019). These behaviours commonly occur in the forms of scratching or pinching, head banging, biting, hair pulling, burning, punching the body, and picking skin or sores (Edelson, 2016; Moseley et al., 2019).
The prevalence of SIB is greater in autistic individuals compared to the general population with one study stating that autistic individuals are three times more likely to display self-injury and suicidality (Blanchard et al., 2021). An estimated 35.8-50% of autistic individuals engage in SIB to varying extents (note that there is variation in samples represented in various papers, i.e., children versus adults) (Baghdadli et al., 2003; Rattaz et al., 2015; Richards et al., 2012; Steenfeldt-Kristensen et al., 2020). The discrepancy in these estimates is partially reflected in the heterogeneity in age groups as well as the terminology and definitions used to describe SIB (Blanchard et al., 2021). Modifying the operational definition of SIB to be more specific and accurate may impact prevalence estimates and “may also help in identifying and mitigating important risk factors” (Forgeot d’Arc et al., 2012).
Multiple underlying causes for SIB in autism are noted, ranging from physiological and biochemical issues to medical conditions, discomfort, and social and environmental causes. The behaviour may occur in various contexts and conditions (Blanchard et al., 2021: Casanova & Casanova, 2016), and may lead to a number of short and long-term impacts on individuals and their families and/or caregivers.
Short and Long-Term Impacts
Direct impacts of SIB, from most common to least, include soft tissue (e.g., skin picking wounds, scars, bruises, localized infection), dental (e.g., broken or loose teeth, gum disease), eye (e.g., scratched cornea, cataract, detached retina), and musculoskeletal (e.g., bone fracture, swelling of joints) injuries (Hyman et al., 1990). The resulting injuries “may require medical treatment in the form of antibiotics and anti-inflammatories, suturing, skin grafts, and surgical intervention” (Summers et al., 2017). Self-inflicted injuries, in particular “open wounds of head; neck; and trunk” were among the top ten primary reasons for autistic individuals to visit the emergency department (Iannuzzi et al., 2015 ). More severe SIB, such as self-biting and head hitting, is correlated with greater support needs for addressing functioning, impulsivity, and over-activity (Summer et al., 2017).
SIB have been associated with decreased engagement and participation in typical education settings, community activities and work opportunities (Miller & Misher, 2016). Further, individuals with autism who display SIB and/or aggressive behaviour can experience associated feelings of shame, and such feelings can further isolate and impede sharing perspectives and experiences with others, potentially influencing less support-seeking and access (Swaab et al, 2021).
Research has suggested that SIB and its associated behaviours or costs can have substantial negative impacts on family well-being. Bleiweiss (2016) notes that SIB exhibited by one’s child is most distressing for their caregiver. Furthermore, “not knowing the reasons why or how to stop [SIB] is both frightening and frustrating to parents and caregivers” (Summers et al., 2017). Swaab and colleagues (2021) discuss the emotional demands on parents whose time and energy are devoted to attempting to soothe the autistic child or preventing injury and destruction of property. The impact on families indicates the need for a range of services and supports addressing caregiver well-being, such as respite care and mental health services (Khara et al., 2020).
Furthermore, treatment addressing SIB can be complex and expensive. Treatment is most successful when it is individualized, comprehensive, and led by an interdisciplinary team of professionals with experience and training in the treatment of SIB (Khara et al., 2020). Yet, these resources may not be available or affordable in many regions. Families that face financial stressors may have difficulty accessing supports related to medical visits and treatment (Khara et al. 2020). These impacts and inequities highlight the pressing need for the availability of comprehensive, connected and specialized supports addressing the multifaceted contributors and impacts of SIB.
Impact of Differential Sensory Processing
Differential sensory processing has often been linked to discussions of SIB in autism (Duerden et al., 2012; Summers et al., 2017) due to its impact on how autistic individuals may perceive and process stimuli. Therefore, better understanding the sensory experiences of autistic individuals helps frame potential contributors to SIB. It is important to note that due to a lack of large-scale studies comparing the incidence of SIB in autistic individuals with their sensory processing differences, the literature on sensory processing and SIB is largely based on hypotheses (Miller & Misher, 2016).
This literature identifies various patterns of differential sensory processing potentially occurring with autism, namely sensory modulation (i.e., displaying a disproportionate response to stimuli), sensory discrimination (i.e., difficulty distinguishing stimuli), and sensory-based motor dysregulation (i.e., difficulty maintaining posture and executing movement due to sensory processing differences) (Miller et al., 2007). The sensory modulation pattern is often discussed in the context of SIB. Sensory hypersensitivity (e.g., higher sensitivity to sensory inputs), sensory hyposensitivity (e.g., lower sensitivity to sensory inputs), and sensory craving (e.g., seeking greater stimulation) are subtypes within sensory modulation (Miller et al., 2007; Miller & Misher, 2016).
It is important to note that individuals may experience fluctuations in their sensory processing, whether in different sensory domains (e.g., be hypersensitive to auditory stimuli but hyposensitive to tactile stimuli) (Ben-Sasson et al, 2019; Summers et al., 2017), or even fluctuations within the same sensory system at different times of the day (e.g., hypersensitive to auditory stimuli in the morning but seeking auditory stimuli later in the day) (Miller et al., 2007). Some autistic individuals require lifespan support in managing sensory processing symptoms (Ben-Sasson et al, 2019), and SIB may be a response to these processing differences, although the evidence is mixed as to which sub-types are most likely to contribute to SIB ( Breau et al., 2003; Moseley et al., 2019; Summers et al., 2017). For example, in the case of sensory hypersensitivity, a person may seek out additional sensory input to ‘compete’ with the sensory system that is causing them to feel overwhelmed. They may engage in SIB for this reason or as an expression of frustration from being overwhelmed by sensory information. In the case of sensory seeking, they may engage in sensory seeking behaviours to ‘feel something’ (Moseley et al., 2019).
Situating SIB within Contextual Variables
A conceptual model, known as the Four Term Contingency Model, has been suggested to understand situational, and often compounding, factors that contribute to the start and repetition of SIB (Moskowitz et al., 2016). This model shifts focus from consequence-based or outcome-focused assessment to encompass the role of the contextual variables (Bleiweiss, 2016).
This model has four components which, though occasionally labeled slightly differently, can be summarized as: setting events (e.g., contextual and situational variables, such as social factors, changes to activities and routines, and biological states, that may increase likelihood of SIB), antecedents (i.e., the immediate preceding trigger), behaviours (i.e., the behavioural response to the trigger), and the consequences (i.e., the functional outcome) (Bleiweiss, 2016; Moskowitz et al., 2016).
Aggressive behaviour towards others can be associated with SIB and aggression is a common reason for parents of autistic children to seek help (Fitzpatrick et al., 2016). Restrepo and colleagues (2020) highlight the connection between co-occurring gastrointestinal conditions and SIB, in which there is a positive relationship between gastrointestinal symptoms, SIB, sleep difficulties, atypical sensory processing, and aggression. Similarly, Leader et al. (2022) report an association between SIB, aggression, and mood disorders in autistic children and adolescents. Like SIB, understanding aggression within the outlined conceptual model also helps to re-frame the behaviour as a response rather than the intended outcome.
SIB as Communication and Influencing Desired Outcomes
This understanding of SIB is grounded in a social understanding of SIB, where while biological factors may contribute, SIB is recognized as complex, responsive behaviours that are functional in nature as a form of communication or to influence an outcome (Moskowitz et al., 2016). Repetitive SIB in response to a trigger causing discomfort or pain has the potential for the individual to recognize the common consequences following the behaviour, such as “attention, social avoidance, task avoidance or escape, tangible-seeking, sensory reinforcement and biological reinforcement” and then repeat the behaviour as a communication device or to lead to the associated outcome (Moskowitz et al., 2016, p. 165). It is often thought that an individual on the autism spectrum is trying to convey a feeling or idea they may not be able to express in words. These types of behaviours may serve as a means of communication by which they get their needs met including the need to express pain, fear, displeasure, or anxiety (Steenfeldt-Kristensen et al., 2020).
Understanding SIB as communication from a medical perspective is important considering the substantial prevalence of co-occurring medical conditions in autism (American Psychiatric Association, 2013). Bauman (2016) notes, “there has been increased and convincing evidence that pain and discomfort, often secondary to any number of medical conditions, can result in disruptive, self-injurious, repetitive, and/or aggressive behaviors” (p. 34). The tendency for underlying symptoms being missed or dismissed due to attributing behaviours to an autism diagnosis (Hardy, 2016) highlights the importance of the ability to interpret behaviour cues to recognize underlying contributors.
A reviewer of this report concurred and further noted that if underlying illness/health issues are dismissed by professionals or others because of one’s autism diagnosis, this can act as a barrier for that individual to seek or access further help. Confounded with additional barriers due to potentially marginalized identities and locationalities (e.g., sexism, racism, etc.), there is concerning risk of people suffering unduly because they are not taken seriously by health or mental health personnel and/or an over-focus on their autism diagnosis may gloss over other heath concerns.
Expressive language use (i.e., speaking, using facial expressions, gesturing) is inversely associated with SIB in autistic individuals (Chan et al., 2022). Hence, understanding SIB as communication or expression is particularly important for non or minimally-verbal autistic individuals due to the higher incidence of SIB occurring in autistic populations with less verbal communication (Rattaz et al., 2015; Shkedy et al., 2019). It is estimated that approximately 30% of autistic children are non or minimally-verbal, which involves the use of less than 30 words (Brignell et al., 2018). Non or minimally-speaking autistic individuals unfortunately often are less represented in the literature due to the impact of cognitive and communication differences on participation in studies (Summers et al., 2017). It has been noted that the relationship between physical discomfort and SIB increases in the context of individuals who are minimally verbal (Bauman, 2016; Edelson, 2022; Jyonouchi, 2016). Accordingly, greater participation of minimally-speaking individuals in this work and research may offer important insights into how to recognize and discern communicative indicators of pain responses and mechanisms (Summers et al., 2017). This under-representation needs to be addressed.
Intervention Strategies
Research demonstrates that intervention tends to yield positive effects on symptoms and later skills (Hyman et al, 2020). Autism and co-existing SIB likely differentially impact individuals due to their unique manifestation (e.g., sensory sensitivities) and coping strategies and supports. A reviewer of this report suggested that a challenge for an autistic individual may be not knowing particular elements of an experience such as the duration of their pain or discomfort. Intervention and supports need to be tailored to the individual. The contextual model supports assessment and evaluation of individual needs to address potential contributors to SIB in a holistic, integrated manner.
It was concerningly and anecdotally commented by a reviewer that in some instances, autistic individuals have been denied therapeutic support for complex issues because a professional reportedly may not work with autistic individuals even though the autistic client may be seeking support for other issues (e.g., mental health concerns such as anxiety). Or alternatively, therapists anecdotally may close cases prematurely. An example was offered of a individual possibly needing longer term monitoring and support for issues such as anxiety, depression, SIB, etc., but only receiving shorter-term support.
Developing a proactive plan to address SIB is imperative, with service access commensurate to need. Broadly, interventions for SIB are reported as pharmacological or context-based (Bleiweiss, 2016). These approaches are briefly described below.
Pharmacological Interventions
Pharmacological interventions may help address the impacts of co-occurring conditions that may be contributors to SIB (Bleiweiss, 2016). Anti-anxiety, sleep or pain medications may address contributory contextual factors triggering a behavioural response. Research is being conducted to better understand the potential role of pharmacological interventions addressing SIB. It is important to note that pharmacological interventions carry the risk of side-effects, which can be additionally complicated for individuals with communication challenges or lower cognitive capacity (Bleiweiss, 2016).
Context-Based Interventions
Context-based interventions focus on behaviour-based approaches that consider individual environments to support the development of individual skills and processes to mitigate or address contributing factors and desired outcomes of SIB (Bleiweiss, 2016). Groden and colleagues (2016) summarize that “the development of any given treatment plan requires more than just a functional assessment of the target behavior. Along with thorough physical and dental evaluations, the stressors that affect the individual and [their] behavior also must be assessed” (p. 270). Proposing a multimodal assessment strategy, Groden and colleagues (2016) suggest a broad-based, comprehensive functional assessment using a range of data collection processes. Context-based interventions utilize functional behaviour assessments to identify “the functions or reasons for SIB” (Moskowitz & Ritter, 2016, p. 203, Groden et al., 2016), and then implement prevention strategies, replacement strategies and response-or-consequence-based strategies (Moskowitz & Ritter, 2016). The categorization of these strategies is meant to be broad, and therefore there may be some overlap.
Prevention Strategies
“Prevention strategies aim to prevent the anxiety from developing, or at least prevent the anxiety from leading to SIB” by “changing the environment in order to alter the antecedents and setting events that lead to anxiety” (Moskowitz & Ritter, 2016, p. 212). While consequent interventions rely on feedback to discourage the use of ineffective strategies and reinforce better skills, antecedent interventions prevent individuals from utilizing ineffective skills (Radley & Dart, 2022). Some examples of strategies used include increasing predictability (e.g., use of visual schedules, social stories, priming and advance warnings), providing reasonable options to allow choice-making, graduated exposure (gradually increasing exposure to a feared trigger in controlled circumstances), counter-conditioning, generalized reinforcement and incorporating perseverative interests (e.g. creating an association between a positive reward or a liked topic or interest with a feared situation) (Moskowitz & Ritter, 2016). Other strategies that target antecedents and setting events include diet-based interventions that focus on eliminating food-based sensitivities in autistic children that increase potential physiologic conditions and decrease overall well-being that may, in turn, contribute to greater likelihood of SIB (Barnhill, 2016).
Some autistic persons display SIB as a means to avoid (i.e., prevent) or escape (i.e., terminate) unpleasant social interactions (Edelson, 2022). However, other autistic individuals report developing effective avoidance (e.g. using fabric softener and minimizing skin contact with abrasive clothes) or escape (e.g. distraction from the negative sensory experience) coping strategies to reduce or eliminate SIB (Kyriacou et al., 2021). However, care should be taken when using such strategies to ensure consistency in implementation and recognize limitations. Researchers note that, “over-reliance on prevention strategies in the absence of teaching skills often results in parents, teachers and providers simply avoiding difficult situations rather than teaching to cope with those situations” (Moskowitz & Ritter, 2016, p. 219). Alternatively, a reviewer noted that support to avoid stressful triggers, as is possible and reasonable, may be helpful. Areas of priority in one’s life may warrant particular interventional attention or focus of support, i.e., areas that are particularly salient in supporting daily functioning and positive experience in everyday life.
It is prudent to be able to introduce alternative strategies where control of an environment is not possible. One such strategy is the use of protective equipment such as bubble helmets (Neufeld & Fantuzzo, 1984 ), dental prostheses (Hong et al., 2021), weighted vests (Davis et al., 2013), and wrist bands (Van Houten, 1993) to prevent self-injury. It is important to note that a substantial proportion of the research on protective equipment use is from over a decade ago. Utilizing such gear/equipment has been associated with a decrease in SIB (Moore et al., 2004; Powers et al., 2007); however, there is heterogeneity in the rate of SIB following the removal of the protective device (Dorsey et al., 1982; Moore et al., 2004), and long-term use of equipment that restricts movement can negatively impact muscle and bone structural integrity (e.g., Powers et al, 2007).
Replacement Strategies
Replacement strategies seek “to teach alternative behaviours or skills that serve the same function(s) as the problem behaviour” to replace the use of SIB and affect the desired outcome (Moskowitz & Ritter, 2016). Some examples of replacement strategies include functional communication training (e.g., providing methods or actions as forms of communication), relaxation training (e.g., use of relaxation skills or techniques to reduce anxiety levels and support coping), and teaching coping skills (e.g., reassuring self-statements or self-talk detailing the situation or the response) (Moskowitz & Ritter, 2016).
Consequence Strategies
Consequence-based strategies focus on deemphasizing the desired functional outcome of SIB by equalling or exceeding positive reinforcement of alternative strategies (Moskowitz & Ritter, 2016). Types of reinforcement utilized for these strategies include positive reinforcement (e.g., creating an association between a positive reward for an approach or behaviour within a feared situation), differential reinforcement (e.g., focusing on rewarding non-injurious behaviour while withholding or delaying outcome reinforcement for SIB), and extinction (e.g., “withholding reinforcement following a behavior previously reinforced”) (Moskowitz & Ritter, 2016, p. 224).
The foregoing strategies are discussed broadly to help contextualize the range of approaches in the literature. It is recognized that certain approaches may be viewed as unacceptable by some or contravene values or particular stances of some in our communities. As an example, a reviewer identified discomfort with behavioral responses as they tend not to not reflect the function or the ‘why’ of a behavior and thus, could miss real and influential issues. Accordingly, caution is advised, and this review simply has attempted to present salient elements conveyed in the literature rather than reflecting on various positions per se. Moreover, this summary is only a broad and brief overview rather than an in-depth analysis of issues or interventions.
Overall, an abundance of literature focuses on the need to examine the role of primary care behavioural screening and early intervention in reducing SIB among autistic people (Chan et al., 2022; Fitzpatrick et al., 2016; Summers et al., 2017) . Research in the last five years has addressed the refinement of tools and methods for measuring pain and a range of emotional responses in this population including physiologic indicators and neuroimaging techniques.
Recent literature seems to address stigma reduction and improved individual and family quality of life (Han et al, 2022; Swaab et al., 2021). Trends in the literature also indicate the need to consider other potential factors in appraising function and supporting individuals. Targeting co-occurring issues and factors contributing to SIB, it is argued, could be facilitative in easing the need for pharmacological interventions and incurring the associated side effects (Chan et al., 2022; Leader et al., 2022; Restrepo et al., 2020).
Future Directions and Recommendations
The reviewed studies are mainly quantitative and based in the United States. More qualitative and mixed methods as well as international (including Canadian) research with diverse samples, is needed in amplifying the experiences of autistic individuals and those who support them. While various important demographic and behavioural variables (i.e., impulsivity, mood, repetitive behaviors) have been investigated, other associated factors such as sleep problems, substance abuse and exercise, appear to warrant further examination relative to SIB in autism. Increased focus on supportive programs/interventions, along with engagement in community settings for diagnosis and services, are needed.
Finally, holistically addressing physiologic and other social considerations, better using technology in prevention, assessment and intervention, and determining measures to ascertain what ignites or heightens instances of SIB, invite further depth in assessment and support. For instance, technology use in determining triggers (Cantin-Garside et al., 2021; Groden et al, 2016) may offer promise (Groden et al, 2016). Innovation and the use of multi-modal assessment, response, technology and intervention offer potential in more concisely anticipating SIB and avoiding or mitigating SIB. While much is yet unknown, a targeted, holistic, and person-centred approach in supporting individuals is indicated in the literature.
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