Ratings of Hypothetical Pain by Children and Adolescents with and without Autism Spectrum Disorders

Background: Historically, there has been a belief that individuals with developmental disabilities/disorders (e.g., autism, Down’s syndrome) do not experience pain. It is now generally accepted that this belief is false and that children with a variety of developmental disabilities are perfectly capable of experiencing pain. However, research continues to focus on the extent to which the experience and expression of pain is the same between children with developmental disabilities and their typically developing peers. Although parents of children with autism spectrum disorders (ASD) often describe their children’s atypical responses to painful experiences, research specifically focused on how children with ASD experience and/or express pain is virtually missing from the pain literature. While one previous study (Nader, Oberlander, Chambers, & Craig, 2004) focused exclusively on pain in ASD, there were significant methodological limitations.

Objectives: The goal of this project is to compare the experience and expression of pain in high-functioning children and adolescents with ASD to typically developing children and adolescents.

Methods: To date, 28 participants (7-17 years-old), along with a parent, have completed the study. Fourteen of the participants were children/adolescents with an ASD, while the remaining participants were age-, gender-, and IQ-matched controls. Using two validated self-report pain assessment tools, participants were asked to rate the amount of pain they would expect to feel in a series of 17 hypothetical pain situations (e.g., falling down on pavement, receiving an immunization) depicted in gender neutral cartooned images. These ratings provide a measure of each child’s pain experience. In order to gather a measure of pain expression, each child’s parent was asked to rate the amount of pain they would expect their child to show in the same hypothetical pain situations depicted in the cartoons. A first-order theory of mind task was employed as a screening measure and participants were excluded if they did not pass this task.

Results: Children with ASD generally rated their pain in the hypothetical vignettes in a similar manner as did the children in the control group. When differences did emerge, they were always in the direction of ASD children rating the hypothetical pain situations as significantly more painful. The difference between each child and parent pair for each scenario was also calculated to create a discrepancy score. A group comparison of these discrepancy scores approached significance [t (474) = -1.838, p = 0.07] with parents in the ASD group rating their children as showing less pain than their children reported experiencing and parents in the control group rating their children as showing more pain than their children reported experiencing.

Conclusions: These preliminary findings suggest that children with an ASD report experiencing the same, if not greater, levels of pain as their non-ASD peers, but that they may be less likely to express this pain to their parents than their peers. These findings have important implications for how pain is assessed and treated in children with an ASD.