Pain is a subjective experience to which only the individual who suffers it has access. While it is understood that pain is the result of neuronal stimulation, when one thinks about the assessment of pain, (s)he does not think about conducting a neurological examination. Instead, pain is generally assessed by its expression, i.e. complaints of discomfort, grimacing facial expression and verbal report that something hurts. For patients who have difficulty communicating, assessing pain becomes a complicated task.
Autism spectrum disorder (ASD) is a neurodevelopmental disorder which affects 1 in 59 children in the USA (Center for Disease Control, n.d.). Its core symptoms involve three main areas, one of which is deficits in socialization and communication. For those on the spectrum, both aspects of communication, receptive and expressive, can represent challenges. A person with ASD may be verbal and quite fluent in his use of language, yet, he may not be able to express the nuances of his emotions or understand symbolic or metaphoric language, or understand abstract concepts such as beauty, youth, empathy, etc. This can make their understanding of pain impaired. Their difficulty understanding social norms also has an impact on the way they express pain–they may not scream as loud as typical person, or grimace when in pain. That may lead to a delay in the realization that an individual with ASD is in pain, and with that, delay in treatment.
When pain is acute, typical individuals will demonstrate they are in pain by screaming, grimacing, tensing certain areas of the body or saying “I am in pain” or “It hurts”. An individual in the more severe end of the spectrum may demonstrate that they are in acute pain through the display of challenging behaviors (Celia, Freysteinson & Frye, 2016) or any behavior that is outside of their norm. The problem in treating chronic pain in people on the spectrum is precisely the fact that it is chronic, so the behaviors that may indicate pain in an acute episode now become frequent, usual and not out of the ordinary any more. Those behaviors now become part of the individual’s repertoire and are seen as something they do frequently, not as a sign of pain. Providers now see the issue as purely “behavioral” and tend to treat it with psychotropic medication which will not resolve the pain and may even aggravate it, as psychotropics usually have side effects related to gastro-intestinal symptoms (e.g. constipation, diarrhea). About 23 to 70 % of people on the spectrum experience gastro-intestinal issues such as food intolerance or sensitivity, bloating/gaseousness, constipation or diarrhea (Chaidez, Hansen, and Hertz-Picciotto, 2014) and exposure to psychotropic medication can aggravate these issues.
Since changes in behavior are the best indicator for pain in people with ASD, perhaps some behavioral assessment tools could be helpful. The Motivation Assessment Scale (MAS; Durand & Crimmings, 1988) is a 16-item questionnaire designed to assess the variables that maintain a behavior, i.e. its behavioral function. Behavior analysts understand operant behavior as a means to an end; this is end (function) is what maintains the probability of this behavior occurring. There are four behavioral functions: attention, when the behavior results in an interaction with someone; escape, when the behavior results in the removal of a demand; tangible, when the behavior results in access to a specific item or activity; and, sensory, when the behavior itself results in sensory stimulation that is pleasurable or decreases aversive stimuli. Challenging behaviors that are the result of pain would fall under the sensory function.
According to the Gate-Control Theory (Deardoff, 2017) it is possible to decrease the intensity of pain in one part of the body by applying pressure to another. It follows that some of the self-injurious behaviors exhibited by children on the spectrum may be an attempt to decrease the intensity of pain in another area of the body. It is possible to detect the sensory function of this behavior by using the MAS. Since it has good test-retest reliability it could capture behaviors associated with chronic pain. Its predictive validity is also good, which makes it a simple way to detect challenging behaviors maintained by sensory function. It is simple and it does not take too long to apply, so it would be feasible to be used in primary care setting. Future research should consider the use of the MAS in primary care settings as a way to detect behaviors associated with pain. Once the behavior has been identified as an expression of pain, it is possible to teach the patient to point to the area where it hurts. It is also possible to teach the caregivers to identify which are possible areas where it hurts and teach them to track the frequency, duration and intensity of these behaviors so that improvement can be monitored.
Celia, T., Freysteinson, W., Frye, R. (2016). Concurrent Medical Conditions in Autism Spectrum Disorders. Pediatric Nursing, 42(5), 230-234.
Center for Disease Control and Prevention (n.d.) Autism Spectrum Disorder (ASD): Data and Statistics. Retrieved from:https://www.cdc.gov/ncbddd/autism/data.html
Chaidez, V., Hansen, R. L. and Hertz-Picciotto, I. (2014). Gastrointestinal problems in children with autism, developmental delays or typical development. Journal of Autism and Developmental Disorders, 44(5), 1117–1127. doi:10.1007/s10803-013-1973-x
Deardorff, W. (2017, June 16). Understanding Chronic Pain: The Gate Control Theory. Retrieved from https://www.pain-health.com/treatment/pain-management/understanding-chronic-pain-gate-control-theory (2 pp)
Durand, V. M., Crimmings, D. B. (1988). Identifying the variables maintaining self-injurious behavior. Journal of Autism and Developmental Disorders18 (1):99-117.
This article has been published originally on the August 2019 Biodyne Newsletter https://mailchi.mp/cummingsinstitute/newsletter_august_2019?e=4d61cd9d42