Pain communication in children with autism spectrum disorder: A scoping review

Children with autism spectrum disorder (ASD) experience social interaction and communication challenges and often display repetitive, restricted patterns of behavior, activities, and interests. The concept of pain is regarded as one of the most complex human stressors due to its subjective and personal nature and the influences of multiple internal and external factors. Due to the complexity of this disorder, it remains concerning how children with ASD communicate their pain and how observers (i.e., parents, carers, and health care practitioners) respond to these children's pain communication. This scoping review aimed to identify how children with ASD communicate or express their pain. Ten studies met the inclusion criteria for further data extraction. Through reflexive thematic analysis, two main themes were identified: verbal and nonverbal responses used by children with ASD to communicate their pain that could influence pain assessment and management strategies. This review highlighted that children with ASD utilized various verbal and nonverbal methods to communicate their pain experiences and that these methods differed compared to children without disabilities. Furthermore, this review emphasizes the importance of holistic pain assessment strategies as well as additional pictorial support for children with ASD. This review recommends that future research should focus on understanding how the inclusion of different stakeholders in pain assessment for children with ASD, can contribute to holistic pain assessment.