Pain Expression in Youth with ASD: Thematic Analysis of Parent Interviews

Background: Historically, it was believed that individuals with developmental disabilities do not experience pain. It is now generally accepted that children with a variety of developmental disabilities, including autism spectrum disorders (ASD), are perfectly capable of experiencing pain. However, there has been limited empirical research on pain in ASD. Clinical impressions and anecdotal observations often suggest that people with ASD have a high pain threshold. In a recent study, we examined pain expression in ASD by employing hypothetical pain scenarios and asking parents to rate the level of pain their child would show in each situation. Results indicated that levels of pain expression rated by parents of youth with ASD did not differ from ratings of parents of typical youth. In addition to quantitative ratings, parents were also asked a series of questions to better understand how their children express pain; the current study focuses on these qualitative results. Objectives: To complete a thematic analysis of responses of parents of youths with and without ASD obtained during a semi-structured interview. Methods: As part of a larger study, 26 parents of youth with ASD and 24 parents of typically developing (TD) youth were asked: 1) How do you know when your child is experiencing pain? and 2) Do you think your child experiences pain differently than a typically developing child/other children? Interviewers wrote the parents' answers to these questions. Subsequently, two researchers completed independent paper-and-pencil thematic analysis of the parents' responses and compared their findings. The researchers were in complete agreement for all themes and sub-themes. They differed on the number of responses assigned to 10 of the 27 sub-themes. These discrepancies were discussed and agreement was reached for all responses. Results: We found that parents of youth with ASD described pain expression by their child in ways that differed from the pain expression described by parents of TD youths. Parents of ASD youths reported that their children show overly dramatic responses, anger, or inappropriate responses to pain. The responses to pain described by the 24 parents of typical children were all considered appropriate and normative (e.g., ‘moody', ‘sulky', ‘frustrated', etc.). Moreover, the ASD parents described the need to interpret their child's behaviour or facial expressions to know if their child is in pain. This is in contrast to parents of TD youths who stated that their children typically tell them when they are in pain or, less frequently, cry, whine, or become quiet. Lastly, some parents of youth with ASD reported that their children appeared to have a high threshold for pain, whereas others reported a high level of sensitivity to pain. All parents of TD youths said that their child experiences pain similar to other children. Conclusions: Although parents of youth with ASD reported typical levels of pain expression in our previous study, the qualitative findings of this study suggest that pain is expressed differently by youth with ASD. These findings are an important first step for future empirical studies of pain expression in ASD.