Systematic review of autistic representation in the treatment literature for pediatric chronic pain

Chronic pain disproportionately affects autistic children and young people, yet they are underrepresented in pain research. Research on psychological, physical, and pharmacological therapies for other conditions suggests modifications are required to ensure treatment accessibility and efficacy for autistic individuals. However, no such evidence base has been synthesized in pediatric pain. The aim of this review was to (1) review existing "gold-standard" treatment literature for pediatric chronic pain to determine the representation of autistic participants, and (2) review literature on treatment of chronic pain specifically in autistic children and young people to describe the current evidence landscape and identify next directions for research. 16.7% (12/72) of randomized controlled trials included in Cochrane reviews of interventions for pediatric chronic pain explicitly excluded youth with a developmental delay/disability, of which only 8.3% specifically named autism. However, 52.8% of Cochrane-included trials had criteria or protocols which may have disproportionately impacted autistic participants, such as excluding intellectual disability, psychiatric conditions, medical conditions, and/or requiring participants to communicate verbally. Twenty-nine studies of treating chronic pain in autistic children and young people were identified, of which the majority were case reports (k = 27, 93%) with large variation in pain condition, intervention applied, and outcomes measured. Given the high prevalence of chronic pain in autistic children and young people, there is an ethical imperative to ensure their representation in intervention trials, co-develop interventions that address the specific needs of autistic individuals who live with pediatric chronic pain, and to increase accessibility in chronic pain research more broadly. REGISTRATION: PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=491423 registered March 19 2024. Open Science Framework: https://osf.io/8na64/ registered December 18, 2023 PERSPECTIVE: Autistic children and young people (CYP) are not represented in reviews of chronic pain treatments, and the literature on treating chronic pain specifically in this population is so variable no clear conclusions can be drawn. Efforts to increase accessibility of chronic pain interventions and research for autistic CYP is needed.