Self-injurious behavior in young boys with fragile X syndrome

In this study, we distributed surveys to 67 families of young boys with fragile X syndrome to determine the prevalence, onset, form, function, location, and correlates of self-injurious behavior. Fifty-five surveys were completed (82%). The mean age of the boys at the time of the survey was 80 months (range = 20-144). Self-injurious behavior (SIB) was reported for 58% of the participants with a mean age of onset of 31 months. The mean number of forms of self-injury was 2 per participant. Biting was the most commonly reported form of self-injury with the fingers and back of the hand disproportionately targeted as the most prevalent self-injury body site. There was no linear increase in risk of SIB with age past 25 months. SIB was reported as most likely to occur following the presentation of difficult task demands or changes in routine. Significant group differences were found between overall ratings of problem behavior for boys with self-injury compared to those without self-injury. Groups did not differ on measures of fragile X mental retardation protein (FMRP), autism status, adaptive behavior, or age first medicated. Results are discussed in terms of future research designed to further elucidate the behavioral phenotype of fragile X syndrome.