A systematic review of risk for the development and persistence of self-injurious behavior in intellectual and developmental disabilities

Abstract

Self-injurious behavior (SIB) by individuals with intellectual and developmental disabilities including autism (I/DD) is among the most clinically disturbing, socially costly, and scientifically challenging behavior disorders. Forty years of clinical research has produced a knowledge base supporting idiographic behavioral assessment and treatment approaches. Despite the treatment progress, from a public health and population perspective, we argue it is less clear that we have reduced the disorder's burden. The developmental course of the disorder is mostly unknown and empirically informed population-level models of risk are absent. In this review, we systematically examined the published scientific literature specific to risk for SIB in the I/DD population. We reviewed study methodology in detail intentionally informed by an epidemiological perspective with a set of questions intended to test the quality of the inferences about risk. Results are discussed in terms of conceptual, methodological, and translational issues with respect to what needs to be done to create credible and useful clinical models for SIB risk in the I/DD population.

Keywords: Intellectual/developmental disabilities; Longitudinal studies; Prospective cohort; Self-injurious behavior.

Fig. 1.

PRISMA Flow diagram illustrating the process of identifying eligible studies.

Fig. 2.

Point prevalence estimates and persistence estimates of SIB by age group and time point. Bars with no fill indicate estimates from T1 and no fill bars are from T2. Stripped bars are persistence estimates. The top panel are estimates from articles with children, the middle panel are estimates from articles with adolescents and adults, and the bottom panel are persistence estimates reported.