Daily living pain assessment in children with autism: Exploratory study

•Children with autism express daily living pain with common and various behaviours.•Pain in children with autism can be assessed with behavioural scales such as NCCPC.•Pain tools have to be adjusted to the symptomatology of children with autism.•A negative emotional component composes a part of pain expression in ASD.•Pain management requires having knowledge of specific disturbances of the ASD. This study aims to broaden knowledge about pain expression and assessment in daily life situations in children with Autism Spectrum Disorder (ASD). The goals are to provide a description of the responses of the GED-DI, the French version of the NCCPC, and to test the internal structure validity of this scale. Thirty five children with ASD were included in this study (mean age=58months; mean developmental age=32months). The French version of the NCCPC was filled in by parents. Descriptive analysis of responses shows that children with ASD express pain through varied and common behaviours, related to different expressive markers (vocal, facial, activity, etc.). Behaviours more specific to the symptomology and disturbances of ASD are also displayed. A four-factor solution (negative emotional reaction, idiosyncratic expression, hyper-vigilance reaction, pain expression) emerges from an exploratory factor analysis that explains 54.4% of the total variance. Correlation coefficients show good psychometric qualities in terms of internal consistency, factorial validity and discriminant validity. This study provides new data about pain expression in daily life situations and shows that the French version of NCCPC adjusted to ASD children is relevant to assess pain in daily life situations.