Self-injury and aggression in adults with tuberous sclerosis complex: Frequency, associated person characteristics, and implications for assessment.
Adults with TSC plus ID carry two to three times the typical ID risk for self-injury and aggression—so screen for pain, communication gaps, and impulsivity at every visit.
01Research in Context
What this study did
Wilde et al. (2017) looked at the adults who have tuberous sclerosis complex plus intellectual disability. They used the Behavior Problems Inventory to count how many showed self-injury or aggression.
The team also checked for other traits like poor communication, gut pain, and impulsivity to see what might raise risk.
What they found
Thirty-one percent of the adults hit, bit, or scratched themselves. Thirty-eight percent hit, kicked, or pushed others.
People with TSC plus ID had higher odds of these behaviors than adults with Down syndrome. Poor communication, GI trouble, and impulsivity each made risk go up.
How this fits with other research
Meuret et al. (2001) found only 10–a large share of people with ID in services show aggression or self-injury. The TSC group in Wilde et al. (2017) shows two to three times those rates, so TSC looks like a high-risk slice of the ID population.
Dinya et al. (2012) also used the BPI and saw self-injury rise as IQ dropped in teens. Lucy’s adults fit the same curve, giving a life-span picture: risk stays high when TSC plus severe ID continues into adulthood.
Robertson et al. (2017) report that dysphagia is common in severe ID. Lucy’s team found GI pain as a risk marker, so swallowing problems may be one source of that pain and thus a hidden driver of SIB or aggression.
Why it matters
If you serve adults with TSC, plan on one in three showing self-injury and two in five showing aggression. Screen for communication delays, stomach pain, and impulsive acts during intake. Share the list with the medical team so GI or pain issues get fast care. Targeting pain and teaching functional communication may cut the behavior you see later.
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02At a glance
03Original abstract
UNLABELLED: Even though self-injury and aggression are common in tuberous sclerosis complex (TSC), understanding of these behaviours in adults with TSC and intellectual disability (ID) is limited. Little is known about their frequency in comparison to other ID-related genetic disorders or their association with other TSC-Associated Neuropsychiatric Disorders (TAND). This study determined the caregiver-reported frequency of self-injury and aggression in adults with TSC plus ID in comparison to Down syndrome (DS) and Angelman syndrome (AS), and assessed demographic and behavioural characteristics associated with the occurrence of each behaviour in TSC. Rates of self-injury and aggression in adults with TSC plus ID were 31% and 37.9% respectively. The odds of self-injury for adults with TSC were nearly twice as high as the odds for adults with DS, and the odds of aggression were over 2.5 times higher for adults with TSC than for adults with DS. When compared to adults with AS, odds of self-injury in TSC were around half those of the AS group, and odds of aggression were less than a third of those for adults with AS. These differences were not statistically significant. In adults with TSC, poorer communication and socialisation skills, gastric health problems and impulsivity were associated with self-injury; compulsive behaviour and impulsivity were associated with aggression. Caregivers and professionals should be alert to the likelihood of these behaviours in adults with TSC plus ID, and to characteristics associated with increased risk for their occurrence. We suggest assessment strategies to identify those at elevated risk. WHAT THIS PAPER ADDS: 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.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.03.007