[Editor's note: This is a complementary article to "Self-injurious Behaviors: A Team Approach to Sensory Interventions in Children with Autism," which appears in the May 21, 2012, print issue of Advance. You can find that article here.]
Self-injurious behaviors (SIB) are not uncommon in children with autism and are particularly prevalent in lower functioning children, children with MR and/or children who are non-verbal. According to Simpson (2004), 5-17 percent of persons with mental retardation and autism do "serious harm" to themselves through self-injurious behaviors.
Though sensory issues are often suspected when these behaviors are present, occupational therapists need to look at the whole picture. There are other several factors that may be at work.
There are endless sources that suggest that pain or significant discomfort in various parts of the body can lead to SIB. Dr. Timothy Buie, Pediatric Gastroenterologist at Massachusettes General Hospital suggests that undiagnosed GI issues can lead to SIB in some autistic patients. Athough it is uncertain whether GI problems are more common in children with autism than in the general population, Buie believes that, based on the frequency of gastro problems he has verified among his autistic patients, a thorough GI history and workup should be a part of the overall medical assessment for every individual with autism (Mahikoa, 2006).
Buie, in conjunction with pediatric neurologist Dr. Margaret Bauman, has identified several "warning signs" that, if seen in a patient, warrant a GI evaluation. Some of these signs include:
· chronic diarrhea or constipation,
· feeding/eating disorders,
· change in sleep patterns,
· food allergies or apparent changes with particular food exposure, and/or
· behavior changes, especially self-injurious, aggressive or mouthing behaviors.
When GI issues (GERD, esophagitis, etc.) are present in children with autism, Buie warns behaviors can emerge that are not typically associated with gastroespohageal reflux. He suggests GERD in children with autism "may present as behavioral alterations including aggression or self-injury, and that these behaviors should prompt consideration of underlying pain". (Mahikoa, 2006)
In a recent interview, Bauman (2012) emphasized the importance of considering GI implications when behaviors suddenly emerge that do not appear directly related to external demands. She also suggests, when possible, parents or caregivers take video of a behavioral episode to provide to their child's neurologist or gastroenterologist for review, as this can provide invaluable information beyond what can be obtained via parent report alone.
Other researchers suggest that pain associated with headaches or middle ear infections may be contributing factors, specifically to behaviors such as head banging or head butting (de Lissovoy, 1963; Gualtieri, 1989). Likewise, eye pain may lead to eye gouging or pressing on the eye; a toothache or sinus infection may lead to behaviors that provide pressure into the head, face or jaw (Powers, 2005). Powers (2005) suggests that any patient with SIB should have a full medical evaluation including physical examination, blood work and urinalysis.
Some researchers suggest that seizures can lead to certain self-injurious behaviors (Edelson, 2012). Gedye argues that SIB's can be symptoms of temporal lobe seizures (Journal of Clinical Psychology, November 1992). He also suggests that some SIBs may be involuntary movements associated with these seizures. Gedye notes that abnormal discharges in the brain's motor cortex can lead to repetitive movements, or tics, that may present as SIBs. Edelson (2004) warns that "since stress can trigger a seizure, there may be a relationship between stressors in the environment and self-injury". Gedye (1992) adds that behavior modification techniques that reduce stress may be effective in reducing the frequency of SIB. For any child with a history of seizures however, consultation with the child's neurologist would be warranted. Follow-up, a more involved EEG and/or medication adjustments may be warranted.
Stephen M. Edelson, PhD, from the Center for the Study of Autism in Salem, OR, suggests that SIB can induce an opiate-like response in the brain due to the release of beta-endorphins (2012). It has been theorized that this feeling of pleasure can then reinforce the behavior and lead to an increased likelihood of recurrence. Early research by Herman et al. (1989) suggests naltrexone (a beta-endorphin inhibitor) can decrease the SIB by blocking the pleasure response. However, more recent research on naltrexone to reduce SIB in adults with intellectual disabilities has dismissed this theory (Willemsen-Swinkels et al., 1995).
Is it Behavioral?
In some cases, these aggressive or repetitive behaviors serve a clear function with regard to social consequences. The SIB may function as a means to avoid a task, gain attention or communicate frustration. If it is behavioral in this regard, providers and caregivers need to look at our own responses to the child. Are we inadvertently reinforcing the behavior by responding to it? Are we allowing it to be an effective means to an end? We need to consider the power of our own responses in perpetuating these behaviors.
Sheldon H. Wagner, PhD, warns, "the source of the behavior is not always what sustains the behavior." Even if the cause is organic, our own social-emotional response still needs to be considered. When our response is to calm, soothe and nurture the child during an episode of SIB, we are creating an environment that serves to increase the likelihood of the behavior occurring again.
Wagner refers to this as "contaminated reinforcement," and suggests we need to remove the psychological and emotional reinforcement that often comes with our attempt to protect the child. We should, he argues, avoid offering social interaction and our responses should be somewhat "robotic," with the sole intent of preventing bodily harm or injury. If there is a physiological source to the SIB, a behavioral approach like this may not be sufficient; however it will prevent us from creating an environment that inadvertently sustains the behavior over time.
"I'm trying to tell you something!"
In some instances, self-injurious behaviors may be due to a communication breakdown. Children with autism often have difficulty expressing their thoughts, wants, needs or ideas. They may over-rely on the familiar people in their lives to anticipate what they need or interpret what they want at any given time. This is a flawed system, however, for obvious reasons and often leads to frustration and aggravation when their needs are not adequately conveyed.
If a child does have an effective communication system (high-tech device, PECS book, etc.) it is critical to ensure its availability at all times, across all settings, and with all individuals. Furthermore, it is the responsibility of everyone in that child's life to respect those communication tools as that child's "voice" and to encourage them to be as independent as possible in communicating their wants and needs. It is not helpful to make assumptions without giving them the opportunity for autonomy.
We can sometimes limit frustration before it gets to the point of engaging in an SIB by honoring the child's choice to avoid or discontinue a task when the situation allows. Offering an alternative, modifying the task, or providing additional assistance to complete the task are simple strategies that can mitigate or prevent unnecessary frustration.
Jennifer L. Stornelli, MOT, OTR/L, has been practicing as a pediatric occupational therapist in the Boston area for the past 9 years. She is currently employed at Spaulding Outpatient Center for Children at the Lurie Center in Lexington, MA.