Procedure-related distress in children with autism spectrum disorders

Abstract

Behavioral and communication deficits in children with autism spectrum disorders (ASD) can complicate the management of procedural pain and distress. Research has shown that children with ASD have significant behavioral changes in response to painful stimuli (e.g., venipuncture); however, specific management strategies for reducing procedure-related distress have not yet been developed and tested in these children. The goals of this two-phase pilot study are: 1) to identify child procedure-related behaviors and management strategies used by parents, and 2) to develop individualized behavioral interventions (based on parent input) for children with ASD. Thus far in phase-1, parents of 22 children (mean child age = 10.5 years, 77% male) with ASD attending a dental clinic completed a survey about their child’s behavior related to medical procedures. Survey items included open-ended questions about children’s behavior during and after procedures, and ratings of children’s difficulty with varying medical stimuli (e.g., unfamiliar people). Parents reported significant behavioral difficulties in most children (96%) and 27% of the children were non-verbal. On ratings of medical stimuli, parents rated their children as having moderate difficulty with unfamiliar people (78%) and increased sensitivity to sounds (77%), textures in mouth (60%), textures on skin (55%), touch (41%), and painful sensations (36%). Many parents (47%) identified increased child anxiety and behavioral agitation at the time of a procedure and 55% noted ongoing behavioral changes following a procedure including anxiety, fatigue, and lethargy. Parents used several management strategies for helping their child cope with procedures including rewards (e.g., money, treats) (41%), verbal/physical comforting (26%), distraction (23%), and explaining the procedure (14%). Phase 2 of our study will focus on developing behavioral interventions that can be individualized to the specific behaviors and procedural stimuli that are difficult for a child with ASD, with a goal of reducing distress related to a medical procedure. Behavioral and communication deficits in children with autism spectrum disorders (ASD) can complicate the management of procedural pain and distress. Research has shown that children with ASD have significant behavioral changes in response to painful stimuli (e.g., venipuncture); however, specific management strategies for reducing procedure-related distress have not yet been developed and tested in these children. The goals of this two-phase pilot study are: 1) to identify child procedure-related behaviors and management strategies used by parents, and 2) to develop individualized behavioral interventions (based on parent input) for children with ASD. Thus far in phase-1, parents of 22 children (mean child age = 10.5 years, 77% male) with ASD attending a dental clinic completed a survey about their child’s behavior related to medical procedures. Survey items included open-ended questions about children’s behavior during and after procedures, and ratings of children’s difficulty with varying medical stimuli (e.g., unfamiliar people). Parents reported significant behavioral difficulties in most children (96%) and 27% of the children were non-verbal. On ratings of medical stimuli, parents rated their children as having moderate difficulty with unfamiliar people (78%) and increased sensitivity to sounds (77%), textures in mouth (60%), textures on skin (55%), touch (41%), and painful sensations (36%). Many parents (47%) identified increased child anxiety and behavioral agitation at the time of a procedure and 55% noted ongoing behavioral changes following a procedure including anxiety, fatigue, and lethargy. Parents used several management strategies for helping their child cope with procedures including rewards (e.g., money, treats) (41%), verbal/physical comforting (26%), distraction (23%), and explaining the procedure (14%). Phase 2 of our study will focus on developing behavioral interventions that can be individualized to the specific behaviors and procedural stimuli that are difficult for a child with ASD, with a goal of reducing distress related to a medical procedure.