Why Does My Child Engage in Self-Injurious Behaviors and How Can I Help?
Does my child want to hurt themself?
Self-Injurious Behaviors (SIBs), not to be confused with self-harm (i.e., intentional), can also be referred to as non-suicidal self injury, and are behaviors involving intentional harm to the body without any intent or plan to end life. Generally, SIBs are more common in those with intellectual delays, delayed verbal language, and weaker adaptive functioning skills, as well as in those who struggled to identify emotions in themselves or others, though this is not always the case. Rates of SIBs for children with autism range from 35-50%. Moreover, SIBs may be 2-3x more common in children with autism than IDs overall without autism. There have also been correlations between children who engage in frequent rocking, and/or experience seizures, severe anxiety, or sleep problems. SIBs and eloping are consistent the two most severe and concerning behavioral problems for children with autism. The most common forms SIBs include head banging, scratching self, cutting self, hitting self, and punching self, self-biting, eye poking, and biting of the tongue. Interestingly, there were no significant differences were identified in terms of frequency or severity in males vs females, though females were more likely to cut themselves and/or pull hair vs males.
As one might imagine, the impact of these behaviors on the children themselves and their families can be monumental. There was a correlation between increased SIBs and maternal and paternal anxiety and depression, indicating the degree to which SIBs can affect parents and caregivers. Caregivers’ exhaustion can be exacerbated by unhelpful advice and minimal support from providers and/or being passed along from provider to provider with no solutions. SIBs are leading cause of medical and psychiatric hospitalization for children with autism. SIBs can result in lacerations, scarring, oral/dental damage, fractures, infections, blindness, and organ damage as well as poorer quality of life, and social and academic interactions. They can also be a significant problem because they can result in removal from school programs or placement in much more restrictive institutionalized setting. Additionally, many parents express increased concerns for children who are about to turn 18 with minimal services available for SIBs. As such, SIBs can cause significant emotional and financial strain on families.
What do we think the reasons are behind self-injurious behaviors? Well, it’s hard to really say for sure because there are so many potential components to SIBs including, cognitive, behavioral, sensory/emotional, social, and medical factors. As such they can be a mix of biologically or environmentally motivated. From what we know, SIBs may serve to indicate pain, a need/desire, frustration, self-punishment, or self-stimulatory needs. It is known that many children with autism have atypical amounts of dopamine, norepinephrine, serotonin, and endogenous opiates (all neurochemicals in the brain), which may explain the tendency towards SIBs and why certain medications may be beneficial. In fact, 67% of those with autism had atypical pain sensations, in which an injury to their body can release endorphins, causing feelings of euphoria. As such, it is suspected that for some, SIBs release these endogenous opiates and dopamine in the context of pain or high physical stimulation, and so the child is essentially chasing a high. There is also a relationship between medical/body pain, sleep quality, and hunger cues and SIBs (think basic needs in which babies will cry). Newer views of motivations of SIBs understand that many engage in SIBs secondary to “barrage of sensations from the environment.” We know olfactory, tactile, auditory, visual thresholds can be much lower (also misophonia) in those with autism and other neurodevelopmental disorders, which cause sympathetic nervous system activation. Some children described it as a release of frustration/anger/guilt/shame, feeling stuck/trapped, feeling rejected or ignored, both internal and external factors. Young children may engage in self-injurious behavior if they feel trapped and can’t escape/express needs (e.g., banging head on crib). Sometimes SIBs occur in response to trauma, and children with autism are generally hyper-vigilant and very sensitive if feel unsafe. Older children have reported engaging in SIBs in response to praise (may feel guilt or pressure). Additionally, increased instances of masking/camouflaging or autistic burnout, which can lead to SIBs.
In terms of the assessment of SIBs, it is really important to obtain an understanding as to the motivating factors of SIBs in order to develop a very individualized approach to intervention. Observations and information from families were critical in understanding motivators of SIBs. Sometimes a formal functional behavioral assessment (FBA) can be helpful; however, FBAs may miss internal and complex factors not tied to observable and immediate external factors. In terms of a formal questionnaire, the Repetitive Behavior Scale-Revised has an SIB subscale, but clinical interview is probably most important. Additionally, there is some new technology being developed that uses sensors to record behavioral data across home and school settings that may be able to warn caregivers of potential SIBs when they are not present by providing exact moments of occurrence, location, severity of behaviors. They can also provide a vibration or other sensation in alert child of emotional or physical escalation.
Once we properly assess the nature, frequency, and severity of SIBs, we can make a more informed decision in terms of potential treatment. Unfortunately, in the past, electric shocks and water deprivation were used in an attempt to “extinguish” SIBs and in an attempt to “prevent institutionalization.” Fortunately, this practice has generally been extinguished. Not surprisingly, early intervention is key for the best outcomes; however, as noted when discussing potential underlying causes and assessment, the intervention appropriate for any given child can vary quite significantly. For some children, they may benefit from medical intervention to reduce pain or discomfort. Abilify or Risperdal can improve SIBs in some children, though often with some side effects. SIBs were one of the main reasons medication was prescribed (on-label) to children, thus if SIBs are well-managed, medication may not be as necessary, given potential side effects. There has been a number of studies regarding Naltrexone, an opioid antagonist, as it has been suspected that it can reduce euphoric sensation and increase feelings of pain/aversive sensory experiences; however, it is not currently FDA approved for SIBs and there are limited RCTs, despite some case studies showing significant reductions in severe SIBs with limited adverse effects. Naltrexone is usually trialed for those who don’t respond well to SSRIs and mood stabilizers (Abilify and Risperdal). There are also some supplements that may be effective as well, like NAC or magnesium. For some, applied behavior analysis therapy made SIBs worse, for some it helped to reduce the behaviors, so it’s also a mixed bag. Typically with ABA or other behavioral modification, differential reinforcement of other behaviors can be useful in providing another behavior that can serve a purpose (self-stim, coping, avoidance) without being detrimental. Some may benefit from sensory integration therapy from an OT if there is a larger sensory role, while others may benefit from speech/language therapy and/or access to AAC device. For others with more developed language skills, mindfulness and distress tolerance can be helpful. Therapy can also be helpful to assist children in differentiating between real and perceived threats. For those within limited access, Telehealth behavioral services may be an effective option for caregiver support and doing real-time assessments, though they are not necessarily effective for emergency/crisis situations, can teach brief interventions. It is important for caregivers and school staff to remain calm and minimally reactive when SIBs are occurring and most important attempt to protect the child. Parental involvement and consistency in behavioral management plans is crucial for reduction in SIBs. Lastly, it is important to note that SIBs often change over time, so need constant awareness and modifications to any behavior plan or supports.