The progression of severe behavior disorder in young children with intellectual and developmental disabilities
Introduction
Intellectual disability (ID) is a severe and chronic condition that is defined by significant limitations in both intellectual functioning and adaptive behavior that manifest themselves before the age of 18 (American Psychiatric Association, 2000). Individuals with ID typically show deficits in cognitive or social-emotional self-regulation and language development (Borkowski, Carothers, Howard, Schatz, & Farris, 2007). Furthermore, individuals with ID often experience, perceive, and produce emotion in atypical ways (Lewis & Sullivan, 1996), which makes it harder for caregivers and peers to interact appropriately and confidently. It also reduces the likelihood that the individual with ID will understand the reactions of others (Walden & Knipes, 1996). Therefore, it is not surprising that severe behavior disorders, such as self-injurious behavior (SIB), stereotyped behavior (stereotypy), and aggressive behavior, are common in the ID population (Cooper, Smiley, Morrison, Williamson, & Allan, 2007).
SIB is self-directed behavior that causes or has the potential to cause physical damage, occurs repeatedly in idiosyncratic form (Rojahn, Schroeder, & Hoch, 2008). Some of the more common topographies include banging the head or body with other body parts or objects, self-biting, self-scratching, self-pinching, gouging body cavities with fingers, and self-hair pulling (Rojahn et al., 2008). Stereotyped behaviors are restricted and repetitive behavior patterns, interests, or activities that are peculiar in intensity or focus. Individuals show an apparently inflexible adherence to routines or rituals, motor mannerisms, or persistent preoccupation with parts of objects (American Psychiatric Association, 2000). Aggressive or destructive behaviors are offensive actions or deliberate overt attacks directed toward other individuals or objects.
Data on the long-term course of severe behavior disorders have only just recently become available in the literature. Overall, research has shown that severe behavior disorders typically develop early, are pervasive and chronic (Fodstad, Rojahn, & Matson, 2012), and are highly correlated with one another (Totsika, Toogood, Hastings, & Lewis, 2008). In a longitudinal study of 58 adults with ID in a residential setting, Totsika, Toogood, Hastings, and Lewis (2008) found that individuals with severe aggression and SIB paired with highly frequent stereotypy were more likely to present these severe behavior disorders 11 years later; whereas the severity of severe behavior disorders did not predict the severity of later severe behavior disorders. Age and level of adaptive behavior were also predictors of the persistence of behavior disorders.
Taylor, Oliver, and Murphy (2011) found in a cohort study of 49 individuals with ID and SIB that 84% of them exhibited SIB 20 years later, with no significant changes in topography or severity. A review by Furniss and Biswas (2012) led to the conclusion that the frequency of SIB is often chronic and stable, regardless of behavioral interventions.
Few studies have looked at the interactional relationship of severe behavior disorder over time. One recent study of 943 children between 4 and 18 years old with severe ID showed that high frequency repetitive stereotypic behavior was a risk factor for later severity of SIB and the presence of other challenging behaviors (Oliver, Petty, Ruddick, & Bacarese-Hamilton, 2012).
While this is a very important categorical study that examined temporal dynamics across behavior problems, we also need to look at severe behavior disorders from a dimensional perspective such that behavior problems can be understood in relation to sequences, processes, and developmental progression (Achenbach, 2000). From this vantage point, the developmental processes that are associated with severe behavior disorder must be identified so that individuals can be classified on the basis of their behavior patterns rather than on their behavior topographies (Tackett, 2010). For example, knowing if an individual's behavior disorder was likely to remain stable or worsen over time could provide a significant contribution to interventions.
Some behavior assessment instruments include a measure of both the frequency and severity of severe behavior disorder, which provide qualitatively different information. However, since frequency and severity of behavior problems are often highly correlated, most research studies focus on frequency alone. Also, longitudinal studies of severe behavior disorders are often limited to lower functioning individuals who are institutionalized or transitioning into the community, and to SIB or aggression only (Cooper and Picton, 2000, Martin et al., 2012, McClean et al., 2005). Finally, there are very few studies utilizing structural equation modeling that can better account for error in measurement and better estimate parameters than commonly used analysis of variance (ANOVA) techniques.
This study, therefore, focused on identifying models of severe behavior disorder over time for infants and toddlers with various developmental delays. Using structural equation modeling (SEM), we tested various models that describe the relationships among frequency and severity of three types of severe behavior disorders over time and across diagnostic categories.
Section snippets
Participants
Data for this study came from a longitudinal research project at the Centro Ann Sullivan del Peru (CASP) in Lima, Peru. Participants were recruited with media advertisements targeted toward parents with children at risk for developmental delay. Roughly 341 of these parents were interviewed by trained veteran parents using the Parental Concerns Questionnaire (PCQ), and 262 of these families were invited for an interdisciplinary evaluation. Inclusion criteria for ID risk factors were genetic
Stability in frequency and severity scores
The best fitting models, which constrained the unstandardized frequency and severity regression paths respectively, showed different levels of stability for the severe behavior disorders (see Fig. 1 or the standardized path coefficients). The frequency of both SIB and stereotypy appeared to be stable over time, with betas ranging from .51 to .92; whereas the frequency of aggressive behavior was weak and unstable, with betas ranging from .09 to .10. However, the severity of both SIB and
Discussion
This research investigated the relationships among frequency and severity for three severe behavior disorders (SIB, stereotypy, and aggression) in children who were diagnosed or at risk for various IDs (i.e. DS, at-risk for Autism, or other delays). Three findings emerged: there was variability in the stability of frequency and severity over time, there was variability in the models of these factors across different severe behavior disorders, and these models of severe behavior disorder did not
Limitations
One limitation to the current study is the period of observation. As discussed by Mitchell and James (2001) and Singer and Willett (2003), the time of measurement is crucial for identifying relationships between variables. Although equally spaced and during the early years of rapid developmental growth, three observations over a year may not have been the specific observations required to accurately represent the larger picture of how these behaviors progress over time. Future research would
Submission declaration
This manuscript has been adapted from research that was submitted as part of the first author's doctoral dissertation, which was accepted and archived by George Mason University.
Acknowledgements
This study is part of an ongoing international collaborative research project between the University of Kansas, Centro Ann Sullivan del Peru, and George Mason University. Research in this publication was supported by the Fogarty International Center and the NICHD, Grant No. HD R21 060500. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the Centers for Disease Control and Prevention.
The authors
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2022, Clinical Psychology ReviewCitation Excerpt :At follow up (7-years), only fewer self-care skills were associated with SIB (Emerson et al., 2001b). Other approaches employed included structural equation modeling (Medeiros, Curby, Bernstein, Rojahn, & Schroeder, 2013), general linear mixed modeling (e.g., Schroeder et al., 2014), growth modeling (Rojahn, Barnard-Brak, Medeiros, & Schroeder, 2015), and a least absolute shrinkage and selection operator (LASSO) analysis (i.e., a penalized form of regression analysis) using T1 variables to predict SIB at T3 (Laverty et al., 2020). Based on the analyses conducted, there were several common risk markers reported.
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