Association for Behavior Analysis International

Pain research in autistic individuals is largely unexplored and insufficient. Self-report is considered the gold standard in the assessment of pain, however self-report measures are not always accessible or feasible for use when communication difficulties are present. Furthermore, autistic individuals are often reported to express their pain in “atypical” ways such as through self-injurious behaviour ,aggression and changes in behaviour such as irritability, low mood, reduced activity, appetite change, changes in sleep, or crying. Consequently, pain is frequently unidentified and ineffectively managed among individuals with communication impairments. Pain management and effective communication about pain experiences are essential components of quality healthcare. This symposium will discuss the recent developments in pain management and pain communication for autistic individuals. Topics will include 1. Improving pain-related communication in children with autism spectrum disorder and intellectual disability. 2. Evaluation of The Feeling Better ASD Pain Management Pain Management Programme for Autistic Children: Pilot and Feasibility Study. 3. Virtual Reality distraction for needle-related pain and distress in children and adolescents with autism spectrum disorder with or without a comorbid intellectual disability: a feasibility study.

Behaviour Analysts working with Autistic individuals who may experience pain and have difficulty communicating pain.

The communication of pain in individuals with co-morbid Autism Spectrum Disorder and intellectual disability (ASD-ID) is largely unexplored. The communication deficits associated with ASD-ID can result in nonverbal behaviour such as self-injurious behaviour, aggression, irritability, and reduced activity as a means to communicate that pain is present. The objective of this study was to determine whether a behavioral- based educational intervention could increase the pain-related communication of children with ASD-ID who experience pain frequently. Specifically, the study aimed to determine if children with ASD-ID can label the location of their pain or quantify pain severity and request pain relief. The sample included three children with ASD-ID who experienced pain frequently. The intervention utilized educational materials and behavioral reinforcements and the intervention was conducted using a series of case studies. Pain was assessed daily by caregivers using the Non-Communicating Children's Pain Checklist—Postoperative (NCCPC-PV) and the ability of the individual to identify and express pain was recorded using the Wong Baker FACES Pain (WBFPS) Scale. Challenging behavior was recorded based on frequency count. The results indicated that all participants displayed the ability to independently respond to a question about how they were feeling by vocalising the location of pain or indicating their level of pain on the WBFPS and requesting pain relief. The results suggest a role for behavioral-based educational interventions to promote communication of pain in people with ASD-ID.

Self-report is considered the gold standard in the assessment of pain, however self report measures are not always accessible or feasible for use when communication difficulties are present. As a result pain is often unrecognised and untreated in autistic children. Feeling Better pain management programme is a cognitive behaviour therapy-based pain management manual which was developed for carers of individual with chronic pain and intellectual disabilities (McManus & McGuire 2010). Feeling Better has been developed into an internet-delivered pain management programme for children and their parents. This research has used public/patient involvement (autistic children and their parents) in the evaluation and modification of the existing computerized ‘Feeling Better’ programme to make an adapted version suitable for autistic children. The adapted version is called Feeling Better ASD. The aim of this research was to examine the effectiveness of the Feeling Better ASD as a pain management intervention for autistic children who have difficulties with pain. There is currently no evidence based online programme designed to increase the communication of pain in autistic children or teach skills to cope with pain. Feeling Better ASD provides inclusive education for autistic children and their parents by teaching the skill of communicating pain (location and severity) and also learning skills and techniques such as relaxation, activity pacing, distraction skills to help them cope with pain.

Available clinical research literature focusing on VR distraction methods for needle-related procedures in ASD populations, is at present, sparse. The current study aimed to examine the feasibility and preliminary effectiveness of virtual reality (VR) distraction to reduce needle-related pain and distress in children and adolescents with ASD and ASD-ID during a blood draw. A randomised controlled trial with a sample of 20 participants with ASD/ASD-ID aged 4 to 16 years attending a routine blood draw were randomly allocated to one of two groups: VR distraction or treatment as usual (control group). Participants in the VR distraction group reported significantly lower pain scores and incurred significantly less avoidant behaviours (as measured by the venipuncture task analysis) when compared to participants in the treatment as usual group, showing large and moderate effect sizes, respectively. High levels of satisfaction with VR distraction were reported by parents/caregivers and nurses/phlebotomists. Results of the feasibility data revealed that VR was feasible, tolerable, and applicable to use with ASD/ASD-ID children and adolescents within a busy clinical environment to facilitate safer blood draw procedures. Finding suggest VR distraction is effective at reducing needle-related pain and anxiety in children and adolescents with ASD/ASD-ID undergoing a venous blood draw procedure.