Pain in individuals with intellectual and developmental disabilities

Historically, pain among individuals with intellectual and developmental disabilities (IDD) has received very little scientific attention and as study participants individuals with IDD have been systematically excluded from pain research. Clinically, the expression of pain by individuals with IDD is frequently ambiguous and its recognition by caregivers and health care providers can be highly subjective. For these reasons we know less scientifically than we should about the nature of pain among individuals with IDD. The purpose of this introductory article is to highlight a number of the issues and challenges associated with the problem of pain in IDD. Many fundamental questions remain unanswered, however, regarding how the pain system functions when its underlying neural substrate is altered. In turn, these barriers limit our understanding of how best to assess and manage pain in individuals with developmental disabilities. We assert, however, that directly addressing the problem of pain among individuals with IDD provides a tremendous opportunity to reexamine at many levels our understanding of what constitutes this universal but highly subjective personal human experience.