Among the bleakest aspects of autism spectrum disorder is engagement in self-injurious behavior (SIB). Self-injurious behaviors are not the norm for children on the spectrum, but they may be more common than you might realize and are agonizing for children and parents alike. These damaging indulgences are incredibly difficult for parents to observe, let alone tolerate. Although not specific to autism, self-injurious behaviors are more aggressive and often persist longer in individuals with autism, especially when left unaddressed. Additionally, self-injurious behavior “often leads to increased risk for institutionalization, reinstitutionalization, social stigmatization, and decreased learning opportunities.”1 Due to their incapacitating nature, health care providers must first address methods for reducing self-injurious behavior “before any significant improvement to function can be accomplished through intervention.”2 Futhermore, these challenging behaviors can limit a parent’s capacity for their own independent life as SIBs may cause added stress and worry, social isolation, and even the possibility of physical danger when left unimpeded.3 While research has found that self-injurious behaviors manifest themselves in both children with and without developmental delays (~15%), neuro-typical children generally resolve self-injurious behaviors before the age of 5.4 They often persist for individuals with developmental delays, sometimes even into adulthood.4 Self-injurious behavior manifests itself in individuals on the spectrum for a variety of reasons, and identifying the root cause of SIB is the best approach for reducing and eliminating these destructive behaviors. This article will explore why self-injurious behaviors occur, how they are identified, and discuss avenues of intervention for reducing and eliminating these serious issues.
Self-injurious behavior has been defined as “an act directed toward oneself that results in tissue damage.”4 They are seen as entirely different from self-inflicted injury which are generally “carried out by a socially, intellectually [typical] person with some kind of psychiatric issue, such as borderline personality disorder.”5 These behaviors often coincide with the red flags of autism as self-injurious behavior “in people with intellectual disabilities [are] generally brought to the attention of clinicians around the age of two years or later.”6 However, a 2012 study found that, for most children, the signs of SIB emerged prior to 1 year of age.4 Identifying, assessing, and treating SIB is considered “to be the most pressing issue facing individuals with developmental disorders or [intellectual disability], including autism.”7 It is widely believed that the “frequency and severity of self-injurious behavior are generally positively related to the severity of intellectual disability.”6 However, this doesn’t mean that higher-functioning individuals on the spectrum do not also engage in SIB. As Bridget Allen, an individual with “high functioning” autism and blogger, admits in her “I’m a head banging, skin biting, hair pulling, mystery bruise getting autistic.”8 Individuals with autism participate in these complex and typically chronic behaviors in a myriad of ways and for a variety of reasons. Common manifestations of self-injurious behavior in children with autism spectrum disorders include:9
Hitting oneself with hands or other body parts
Head-banging
Eye-poking
Biting oneself (on the wrists, for example)
Picking at skin or sores
Scratching or rubbing oneself repeatedly
The repetitive and intense nature of these behaviors is what makes them dangerous for individuals on the spectrum to the point that they pose a physical risk, which can result in major, long-term injuries including tissue damage, impaired vision, deafness, and worse.10-11 Even self-injurious behavior that seems like typical repetitive behaviors, such as skin rubbing, can have serious consequences over time.9 Recognizing and addressing SIB issues is critical for intervention.
Causes of Self-Injurious Behaviors
When the first signs of SIB become evident, it is important to work to determine the cause as to why your child is engaging in this behavior. It is essential to define the specific behavior (e.g. head banging), as opposed to combining different types of self-injury into one general behavior, because that may lead to difficulty in determining the specific reasons for each behavior.12 The causes of SIB may be behavioral, psychiatric, and/or medical.13 Individuals exhibiting multiple forms of self-injury, for example wrist biting and excessive scratching, may be engaging in each behavior for separate reasons. For example, wrist-biting may be a reaction to frustration, whereas excessive scratching may be a means of self-stimulation.12 Like autism itself, finding treatment for SIB is difficult because there may be multiple environmental and/or physiological issues occurring simultaneously. For a unique perspective on SIB, a 3-year research study, known as the Hidden Pain? Research Project, was carried out by Self Injury Support in the UK, with the aim of obtaining the point of view of people with learning disabilities about their personal reasons for engaging in self-injury.14 Below is a discussion of the root causes of SIB, including research findings from the Hidden Pain? Research Project, which will better illuminate the complexities of SIB:14
Factors of SIB according to HPRP:
Internal factors/ Pain: These include specific thoughts or memories, particularly traumatic experiences or anxiety, and underlying medical issues.14 Other research has shown that some individuals with ID or who are non-communicative may engage in SIB as a means of quelling internal pain. For example, there are instances of children engaging in head-banging as a means of reducing pain from a middle ear infection or migraine headache.12 Additionally, undiagnosed gastrointestinal issues may be a cause of SIB.15 Changes in the body can, such as age-dependent medical problems, can also result in increased SIB.13 It is also possible that some individuals may be “gating” pain, meaning they are stimulating one area of the body, in this case through self-injury, to “reduce or dampen the pain in another area of the body.”12 Individuals exhibiting SIB should undergo a complete medical evaluation.13 Coping with anxiety as a result of a lack of communication or frustration is discussed in the next section.
External Factors: Participants in the study viewed external factors as those that involved what was occurring around them, but they had little or no control over them personally.14 Individuals from the research project admitted that external factors, such as being in disempowering circumstances, including not being listened to, being treated like a child, being told off or being told what to do, or experiencing a lack of control within their environment resulted in self-injury. 14
Interpersonal Factors: These generally involved being bullied and arguments, either with someone else or overhearing an argument.14
Hidden Distress: Researchers found some participants underwent considerable past trauma. They found that for some, “thinking about difficult times was directly related to their self-injury.”14 Interestingly, few family members or professionals mentioned being aware of this correlation between past trauma and SIB.14
As evidenced by these self-reports, a variety of factors played a role in SIB. In her blog, Bridget Allen discusses how devastating her SIB made her feel and how she felt they were not just detrimental personally, but also damaging because of the ways it affected those she cared about. In her writing, she states that “For me the awful part of SIBs is seeing the pain it causes those who care about me. This hurts more than any physical pain. It even hurts more than the root causes that drive me to SIB in the first place.”8 This powerful sentiment depicts how distressing and destructive SIBs can be for those who engage in them.
Other Factors Related to SIB:
Biochemical: Researchers have found that “sometimes SIB can be a clue to the underlying dysfunction of biochemistry in the patient, in other individuals, it appears non-specific.”16 Some examples found in literature include a group of children with autism who had low levels of calcium and often exhibited eye-poking behavior.12 When given calcium supplements, the eye-poking decreased substantially and language functioning improved. In instances of a biochemical abnormality being associated with SIB, “there may be little or no relationship between the person’s physical/social environment and self-injury.”12 In cases such as these, changes in diet and nutrition as well as other biomedical interventions may serve to reduce or eliminate SIB through normalization of biochemistry.12
Communication/ Frustration- In addition to ID, poor communication skills have been associated with SIB with “speech impairment [resulting] in individuals engaging in SIB and other problem behaviors to express their needs.”17 Frustration, whether it’s a product of a limited ability to communicate or originates from another source, can also lead to SIB.12 When SIB occurs as a product of frustration you may be able to teach “the child a way to cope of communicate [that] will prevent the self-injury. Simply giving the child constructive things to do may prevent boredom, which could lead to self-injury.”9 Also, Functional communication training (FCT) has been “shown to decrease rates of SIB and other problem behaviors in a number of well-designed studies.”17
Sensory: There is evidence that dysfunction of sensory processing symptoms leads to engaging in aggressive self-stimulatory behavior. Individuals with sensory deficiency or sensory overload may use “self-stimulation in order to either compensate for restricted sensory input or to avoid over-stimulation.”2 This is similar to how children on the spectrum may engage in repetitive behaviors as a soothing method to avoid meltdowns.18 It has also been noted that “the same behavior may be used for either compensation or avoidance, making it difficult to identify its specific function.”2 Due to sensory deprivation, individuals on the spectrum may be able to tolerate high doses of pain. The findings of a 2005 research study matched that of previous studies, finding “no change immediately following sensory integration intervention however, after a latency period, they report a reduction in self-stimulating and self-injurious behaviors.”2 SIB as a result of sensory issues may decrease if the person is busy “because his/her attention is directed away from his/her body.”12 It may also be possible to replace self-injurious behavior by encouraging the application of “safe forms of physical stimulation to the parts of the body which he/she rubs and/or scratches excessively. This could include applying a massaging vibrator, rubbing textured objects against the skin, and rubbing a brush against the skin.”12 Visit the Sensory Processing Disorder Foundation for information on the Red Flags of SPD.
Arousal: Researchers have suggest that self-injury may increase or decrease one’s arousal level. Children with low arousal may engage in self-harm as an extreme form of self-stimulation.19 Overarousal, for example frustration, may cause an individual to engage in self-injurious behavior as a release, gradually lowering the arousal.20 For individuals prone to over-arousal, it may be beneficial to reorganize their environment to make it less stress-inducing (e.g. decreased noise levels, a safe area for when they become anxious/overwhelmed), reorganize routines and activities to decrease exposure to stressful situations, and to remove unnecessary triggers for anxiety.21 A simple way for identifying unwanted stressors is to list out situations in which the SIB is likely to occur. By identifying the behaviors that lead to aggression, you can take precautionary measures, such as relaxation techniques, avoidance strategies, or exercise to limit SIB.12 Conversely, take account of the situations in which these behaviors are less likely to occur. Individuals who experience self-injury due to under-arousal benefit from structured routines void of idle time as a lack of stimulating activities provides them opportunity to engage in SIB.12
Social Avoidance/Attention: Individuals may engage in SIB to gain attention from an individual or to avoid an undesirable social situation or encounter.19 For example, a child may engage in SIB at school to avoid academic tasks or to avoid having to play with their classmates outside.22 For some, engaging and receiving attention for bad behavior is better than no attention at all.22 If a person receives positive attention (e.g. hugs, playtime) for engaging in SIB, then they are likely to engage in it again. Extinction-based interventions are frequently used to treat SIB.17 In these situations, implementation of “planned ignoring,” in which “the attention from others in the environment that has previously been maintaining the problem behavior is no longer provided contingent upon the behavior. Essentially, SIB is ignored by the people in the child’s environment. Eliminating reinforcement results in a decrease in SIB over time.”17 Parents and caregiver should only implement planned ignoring when they are absolutely certain there is no risk for serious injury.12
Genetics: Several genetic disorders linked to intellectual disability, including Lesch-Nyham Syndrome, Fragile X Syndrome, and Cornelia de Lange Syndrome, are “associated with some form of structural damage and/or biochemical dysfunction” that may cause the person to self-injure.12
It is important to understand that all behaviors occur for a reason and the underlying cause(s) for each child’s engagement in SIBs are different. Remember, repeated behaviors are repeated because “unless a behavior serves some kind of function for [the individual] it wouldn’t typically continue to occur.”22 For more information on the possible causes and treatment techniques for SIB, visit here and here.
Addressing Self-Injurious Behavior
Parents and caregivers should act immediately when signs of aggressive and self-injurious behavior first become apparent. A major concern with SIB is the safety for the individual and those he/she encounters.23 Parents and caregivers can play an active role in addressing self-injury by taking note of how they attend to a child after an episode.19 As mentioned above, it is important to remember that children may engage in multiple SIBs to serve a multitude of functions.12 As opposed to “trial and error” intervention, careful examination of a person’s behavior can assist professionals with identifying and implementing the appropriate intervention.12 Once an underlying medical cause has been ruled out, healthcare providers should conduct a functional behavior assessment “as a first step in trying to understand why a learner with ASD may be engaging in interfering behaviors. As a function of the behavior becomes apparent, teachers/practitioners develop interventions to reduce the occurrence of the interfering behavior in question.”24 In the case of SIB, clinical assessment “requires input from caregivers and a complete medical evaluation. The frequency, intensity, and targeting of SIB provides helpful clues to etiology.”13 Aside from a behavior evaluation, a neurological examination, a psychiatric evaluation, and an assessment of medications, which can sometimes invoke self-injurious behaviors as a side effect, should also be conducted.13 Specifically, a functional analysis of behavior should ascertain “Who was present? What happened before, during, and after the behavior? When did it happen? Where did it happen? Hopefully, the answers to these questions may help reveal the reason(s) for the behavior.”12 Only once you have identified the suspected cause of SIB, healthcare providers can implement behavioral interventions that target the root of SIB and/or provide medication to reduce and hopefully eliminate self-injurious behavior.25
Conclusion
Due to their bleak and personal nature, self-injurious behaviors are rarely at the forefront of autism-related discussions. However, they pose a serious threat to the well-being of individuals who engage in them and those who care for those individuals. Left unaddressed, it is possible for self-injurious behaviors to have serious, life-threatening consequences. Whether self-injurious behaviors are driven by physiological or behavioral causes, they must be addressed swiftly with a medical assessment and functional behavior assessment. Discovering the core issues with SIB may require input from healthcare providers, teachers, family members, and others who are commonly present when SIB occurs. For more on SIB and other challenging behaviors, see Autism Speaks’ Family Services Challenging Behaviors Tool Kit.
References:
1. Symons, Frank J. “Self-Injurious Behavior in Neurodevelopmental Disorders: Relevance of Nociceptive and Immune Mechanisms.” Neuroscience and Biobehavioral Reviews 35, no. 5 (April 2011): 1266-74. Accessed December 1, 2015. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086601/.
2. Smith, Sinclair A., Koening, Kristie P. “Effects of Sensory Integration Intervention on Self-Stimulating and Self-Injurious Behaviors.” The Journal of Occupational Therapy59, no. 4 (July/August 2005): 418-425. http://www.spdfoundation.net/files/5014/2430/1329/smith_press.pdf.
3. “Autism Speaks® Family Services Challenging Behaviors Tool Kit.” Autism Speaks, Inc. 2012. Accessed December 1, 2015. http://www.autismspeaks.org/sites/default/files/challenging_behaviors_tool_kit.pdf.
4. Kurtz PF, Chin MD, Huete JM, Cataldo MF. “Identification of emerging self-injurious behavior in young children: A preliminary study.” Journal of Mental Health Research in Intellectual Disabilities 5 (2012):260–28. Accessed December 1, 2015. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3404746/.
5. “Stimming: Repetitive, Stereotyped, and Sometimes Self-Injurious Behaviors.” Interactive Autism Network (IAN). October 30, 2008. Accessed December 1, 2015. https://iancommunity.org/cs/challenging_behavior/challenging_behaviors_stimming.
6. Rojahn, Johannes and Stephen R. Schroeder. Self-Injurious Behavior in Intellectual Disabilties: 2 (The Assessment and Treatment of Child Psychopathology and Developmental Disabilities). Amsterdam, The Netherlands: Elsevier, 2008.
7. Mahatmya, Duhita, Alicia Zobel, and Maria G. Valdovinos. “Treatment Approaches for Self-Injurious Behavior in Individuals with Autism: Behavioral and Pharmacological Methods.” Journal of Early Intensive Behavior Intervention 5, no. 1 (2008): 106-118. Accessed December 1, 2015. http://files.eric.ed.gov/fulltext/EJ805951.pdf.
8. Allen, Bridget. “Self-Injurious Behaviors.” It’s Bridget’s World (blog). October 2012. Accessed December 1, 2015. http://itsbridgetsword.com/2012/10/.
9. Heffner, Gary J. “Introduction to Self-Injurious Behavior.” Synapse. Accessed December 1, 2015. http://www.autism-help.org/behavior-self-injury-intro.htm.
10. Rimland, Bernard. “Controlling Self-Injurious and Assaultive Behavior in Autism.” Autism Research Review International 15, no. 4. (2001): 3. Accessed December 1, 2015. http://www.autism.com/treating_self-injurious.
11. McGrath, Courtney. “Roots of a Dangerous Habit.” Potential Magazine 7, no. 1 (Winter 2005). Accessed December 1, 2015. http://www.kennedykrieger.org/potential-online/potential-winter-2005/roots-dangerous-habit.
12. Edelson, Stephen M. “Understanding and Treating Self-Injurious Behavior.” Autism Research Institute. Accessed December 1, 2015. http://www.autism.com/symptoms_self-injury.
13. Powers, Richard E. “Assessment and Management of Self-Injurious Behavior (SIB) in the Adults Person With Mental Retardation and Developmental Disabilities (MR/DD).” Bureau of Geriatric Research. 2005. Accessed December 1, 2015. http://www.ddmed.org/pdfs/7.pdf.
14. Hesop, Paulina and Fiona Macaulay. “Hidden Pain? Self-Injury and People with Learning Disabilities.” Self Injury Support. Accessed December 1, 2015. http://selfinjurysupport.org.uk/files/docs/hidden-pain/hidden-pain-summary.pdf.
15. Stornelli, Jennifer L. “Self-Injurious Behaviors in Children with Autism.” Advance Healthcare Network for Occupational Therapy Practitioners. May 21, 2012. Accessed December 1, 2015. http://occupational-therapy.advanceweb.com/Features/Articles/Self-injurious-Behaviors-in-Children-with-Autism.aspx.
16. Gillberg, Christopher and Mary Coleman. The Biology of the Autistic Syndromes. London, England: Mac Keith Press, 2000.
17. Minshawi NF, Hurwitz S, Fodstad JC, Biebl S, Morriss DH, McDougle CJ. The association between self-injurious behaviors and autism spectrum disorders. Psychology Research and Behavior Management. 2014;7:125-136. Accessed December 1, 2015. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990505/.
18. Baker, Jed. No More Meltdowns. Arlington, TX: Future Horizons, Inc., 2008.
19. “Addressing Self-Harm Behaviors in Children on the Spectrum.” My Aspergers Child. April 2015. Accessed December 1, 2015. http://www.myaspergerschild.com/2015/04/addressing-self-harm-behaviors-in.html.
20. Turkington, Carol and Ruth Anan. The Encyclopedia of Autism Spectrum Disorders. New York, NY: Facts on File, Inc., 2007.
21. Clements, John and Ewa Zarkowska. Behavioural Concerns & Autistic Spectrum Disorders: Explanation and Strategies for Change. London: Jessica Kingsley Publishers, 2000.
22. Cosgrave, Gavin. “Functions of Behaviour.” Educate Autism. Accessed December 1, 2015. http://www.educateautism.com/behavioural-principles/functions-of-behaviour.html.
23. Weber, Stephanie. “Physical Discipline & Autism: A Parent Asks for Guidance.” Got Questions? (Blog). Autism Speaks, Inc. Accessed December 1, 2015. https://www.autismspeaks.org/blog/2014/08/15/physical-discipline-autism-parent-asks-guidance.
24. Neitzel, J. & Bogin, J. (2008). Steps for implementation: Functional behavior assessment. Chapel Hill, NC: The National Professional Development Center on Autism Spectrum Disorders, Frank Porter Graham Child Development Institute, The University of North Carolina. Accessed December 1, 2015. http://csesa.fpg.unc.edu/sites/csesa.fpg.unc.edu/files/ebpbriefs/FBA_Steps_0.pdf.
25. “Aggressive and Self-Injurious Behaviors in the Context of Developmental Disability in Children and Adolescents - Clinical Recommendations.” UF Health. Accessed December 1, 2015. http://dcf.psychiatry.ufl.edu/files/2011/05/Aggressive_Guidelines2011041301002728.pdf.