Self-injurious behavior (SIB) is a major treatment focus and area of concern for clinicians treating children with ASDs. Approximately 50 % of individuals with ASD engage in some form of SIB (Minshawi et al., 2014). SIB describes a group of behaviors characterized by self-inflicted injuries causing tissue damage, such as head banging on hard surfaces, self-biting, eye-poking, and self-hitting. SIB can result in physical injuries, fractures, head injuries, detached retinas, and in extreme cases even death (Minshawi et al., 2014; Sisk, Motley, Yang, & West, 2013). Overuse of psychotropic medications, use of restraint or physical hold procedures, and injuries to staff and individuals in treatment are all possible effects of SIB.
A systematic review of the literature identified associations between a variety of medical conditions and SIB. Evidence from the literature also suggests that common physical conditions are more prevalent in individuals with ASD including allergies, gastroesophageal reflux disease, constipation, dental caries, and otitis media (Coury et al., 2015; Furtura et al., 2015; Malow et al., 2012; Mayer et al., 2014; Sikora, Johnson, Clemons, & Katz, 2012). Challenging behaviors such as aggression and SIB and communication deficits make it less likely that health problems will be diagnosed and treated in a timely manner. Patient compliance and difficulties with completing a physical exam impede assessment and treatment. Untreated health conditions can result in pain and suffering, leading to SIB. Certain behavioral topographies can be associated with underlying medical conditions. Chest tapping, chewing of clothing and pacing can be observed in individuals sufferring from constipation (Bauman, 2010). Chin hitting, increased drooling and head hitting can be observed in individuals experiencing dental pain (Shanmugam et al., 2014). Targeted assessment and treatment is needed to reduce SIBs in children with ASDs.
No evidence based tools were located to assist the healthcare team in identifying underlying health issues that may contribute to the emergence of SIB in non-verbal children with autism. This project involved the development of and preliminary validation of a standardized assessment checklist for the physical, behavioral, and diagnostic evaluation of non-verbal children with autism and SIB living in residential care facilities. Instrument face, content, and expert validity was established. Expert review provided content validity of at least 75% on all checklist items. Satisfactory interobserver agreement (IOA) was established. Two registered nurse raters conducted the IOA. Percent-agreement scores were between 74-90% total, 83-95% agreement was established for any positive rating. Kappa scores ranged from .348-.792, with probability levels below .001 or highly significant, demonstrating intermediate to good agreement beyond chance.
The checklist was piloted on 10 individuals between the ages of 12 and 21 living in residential treatment. Each checklist item was rated using an ordinal scale, the physical items on the checklist were dichotomous. Each of the 60 items on the checklist were scored and subdivided into domains that included; gastrointestinal, head, eyes, ears, nose, and throat (HEENT), dental, and miscellaneous. During the pilot testing phase, total domain scores were calculated using the checklist and triangulated with a physical exam completed by an advanced practice registered nurse (APRN) and considered either a match or no-match. Nine out of the 10 subjects were a match, demonstrating that the scores obtained using the checklist matched the findings of the physical exam. A high score on the checklist correlated with a positive physical exam finding, and a low score on the checklist correlated with a negative exam. A grand total score for the checklist was also calculated by summing the domain scores. The grand total score is useful as a longitudinal measure to assess the individual over time, and to establish an individual baseline.
Results of the project supported the literature, suggesting an association between underlying medical conditions and the emergence of SIB in non-verbal children with ASD. Preliminary validation suggests that the checklist can provide a means for earlier identification of underlying medical concerns and subsequently result in improved treatment outcomes and reduced pain and suffering for children with ASD. Educating nurses about ASDs and the impact illness has on the emergence of SIB in non-verbal children with ASD is critical to improving nursing knowledge and patient outcomes.