Measuring Perioperative Distress in Children with Autism Spectrum Disorder

Background: The surgical experience can be distressing for children. Between 40% and 50% of typically developing children experience distress during the induction of anesthesia. The characteristics of children with ASD may make them especially vulnerable to the demands of surgery. Deviation from routine (e.g., lengthy wait times, unfamiliar environments), hyper- or hypo-reactivity to sensory stimulation, and limitations in verbal and non-verbal communication may all result in heightened levels of distress for these children. Whereas the behavioural manifestations of distress and the frequency of perioperative distress has been well characterized in typically developing children, similar systematic descriptions have not been made in children with autism spectrum disorder (ASD). This study aimed to describe the behavioural manifestation of perioperative distress and the frequency of perioperative distress in children with ASD.

Objectives: The specific aims of this paper are to: 1) describe the frequency of parent-reported child distress across the perioperative course for a sample of children with autism, and 2) describe the behaviours parents use to judge children’s level of distress.

Methods: Participants in this study were 55 parents and their children with ASD undergoing outpatient surgery with general anesthesia. Parents completed the Autism Perioperative Stoplight Distress Scale—a novel, theory-driven measure—to assess their children’s distress at four time points (in the preoperative holding area, when the child was taken to the operating room, at induction, and in recovery) two to eight days after their child’s surgery. This measure asked parents to rank their child’s distress from ‘green’ (“good to go”), to ‘yellow’ (“a little bit on edge”), to ‘orange’ (“increasingly distressed or aroused”) to ‘red’ (“experienced full-on distress”) and to describe the behaviours they witnessed at each of the four time points.

Results: Results indicated that 89.1% percent of children with ASD experienced perioperative distress, with 38.2% of children experiencing extreme distress at one or more time points. Children experienced the most distress at the induction of anesthesia (84.6%, n = 13), and in the recovery unit (78.2%, n = 55). Parent reported behaviours were coded into 20 categories. The most common distress behaviours reported by parents included: fearful, distressed vocalizations, resistant, and uncomfortable.

Conclusions: Nearly 90% of children with ASD experienced perioperative distress, with a large portion of children experiencing extreme distress. Parents reported several novel behaviours that have not been included in assessment scales for typically developing children (e.g., repetitive behaviours, self-injurious behaviours, repetitive questioning). Many behaviours were reported across all four levels of distress, suggesting that parental input or individualization will be needed to interpret behavioural observations if they are to be used in future studies. This study provides a unique contribution to the fields of autism and anesthesiology in that it is the first to empirically describe the unique set of behaviours that children with ASD may display perioperatively and outlines the large frequency of children experiencing perioperative distress.