Self-injurious behavior

Sylvia Huisman, Paul Mulder, Janneke Kuijk, Myrthe Kerstholt, Agnies van Eeghen, Arnold Leenders, Ingrid van Balkom, Chris Oliver, Sigrid Piening, Raoul Hennekam

Research output: Contribution to journalReview articleAcademicpeer-review

49 Citations (Scopus)


Self-injurious behavior (SIB) is a relatively common behavior in individuals with intellectual disabilities (ID). Severe SIB can be devastating and potentially life-threatening. There is increasing attention for somatic substrates of behavior in genetic syndromes, and growing evidence of an association between pain and discomfort with SIB in people with ID and genetic syndromes. In this review on SIB phenomenology in people with ID in general and in twelve genetic syndromes, we summarize different SIB characteristics across these etiologically distinct entities and identify influencing factors. We demonstrate that the prevalence of SIB in several well-known genetic intellectual disability syndromes is noticeably higher than in individuals with ID in general, and that characteristics such as age of onset and topographies differ widely across syndromes. Each syndrome is caused by a mutation in a different gene, and this allows detection of several pathways that lead to SIB. Studying these with the behavioral consequences as specific aim will be an important step toward targeted early interventions and prevention.
Original languageEnglish
Pages (from-to)483-491
JournalNeuroscience and Biobehavioral Reviews
Early online date2017
Publication statusPublished - 2018

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