Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent–maternal dyadic study

Abstract

Objective Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain. Methods Ten autistic adolescents (6 female, 3 male, and 1 self-identified as agender) with chronic pain and their mothers (n = 10) participated in semistructured interviews concerning their perceptions of living with chronic pain. Participants were recruited from U.K. pain management services. According to preference, interviews were conducted individually (n = 10) or dyadically (n = 10 participants across 5 dyads). Data were analyzed using inductive reflexive thematic analysis. Results Two themes were generated. Theme 1, “overstimulated and striving for control” described how adolescents’ experience of heightened sensitivity enhanced adolescents’ levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain, and sensory elements. Theme 2, “not everyone fits the mold” captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference negatively impacted adolescents’ ability to engage with and benefit from the standard treatment for chronic pain. Conclusions Findings suggest that autistic adolescents living with pain experience pain and face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.

Chronic Pain in Autistic Youth: Clinical Prevalence and Reflections on Tailoring Evidence-Based Interventions from an Interdisciplinary Treatment Team

“…Recently published qualitative work has called for a more systematic characterization of pain among autistic youth to guide individualized treatment and improve outcomes for this underserved and vulnerable group [ 48 ]. This clinical commentary begins to address this need by integrating well-documented sensory, emotional, cognitive, motor, and social factors into the chronic-pain and autism literatures to explain high rates of chronic pain for autistic youth in a clinical setting.…”