Self-injury and aggression in adults with tuberous sclerosis complex: Frequency, associated person characteristics, and implications for assessment

Abstract

This paper adds specific examination of behavioural difficulties in adults with tuberous sclerosis complex who also have intellectual disability, a population at heightened risk of adverse behavioural outcomes which has received limited focussed examination to date. Findings support existing suggestions that there is relatively high risk for both self-injury and aggression, and provide novel insight into characteristics that may be associated with the presence of these behaviours.

A clinical update on tuberous sclerosis complex‐associated neuropsychiatric disorders (TAND)

“…They also noted a higher risk for self-injury in individuals with ID, as did Wilde et al (2017), who also reported a higher risk for aggression in lower functioning individuals with TSC.…”

“…This diversity may reflect the TSC population. However, it is also known that both age and intellectual ability influence the manifestation of TAND behaviours, with more difficulties generally reported in individuals with intellectual disability (ID) and in children (de Vries, Hunt, & Bolton, 2007; Wilde et al, 2017). Given the significant proportion of unreported or missing data identified in the TOSCA study, the study authors proposed that the low reported rates identified in TOSCA suggested that, even in TOSCA participating centres, TAND manifestations were typically under-identified and under-treated (Kingswood et al, 2017).…”

“…Rates of self-injury are significantly lower in children and adolescents without ID (de Vries, Hunt, & Bolton, 2007), and also in adults who have ID (Wilde et al, 2017), suggesting that this behaviour is sensitive to gains in both age and ability. Children with severe ID are therefore a particularly high-risk group for this deleterious behavioural outcome.…”

“…Evidence suggests that in children and adolescents, overactivity and impulsivity correlates strongly with the presence or absence of ID (de Vries, Hunt, & Bolton, 2007), and there is some indication that overactivity may decrease with age (see Table 2). More nuanced studies of overactivity and impulsivity are warranted to identify priorities for intervention for these problematic behaviours in TSC, particularly given robust associations between impulsivity and self-injury and aggression in TSC (Eden et al, 2014; Wilde et al, 2017; Wilde et al, 2018), suggesting that impulsivity may be a risk marker for these adverse behavioural outcomes.…”

Persistence of self‐injury, aggression and property destruction in children and adults with tuberous sclerosis complex

“…Using the same measures with an adult sample (all of whom had ID), rates of self‐injury were 31% (Wilde et al . ). Rates of aggression are reported to be higher than self‐injury, and prevalence estimates are more consistent, from 51 to 66% (Leclezio and de Vries ).…”