‘I've always been unable to really communicate the extent to which I feel like I know what's going on with my pain’: Investigating Autistic Adults Communication of Pain to Healthcare Professionals

Autism Spectrum Condition (ASC) is a neurodevelopmental condition which affects approximately one percent of the population. ASC is linked closely to multiple psychiatric and physical comorbid conditions. Many of these physical comorbidities are known to cause chronic pain, leading to autistic people seeking help from healthcare professionals (HCPs) for their pain. When communicating pain to HCPs there are various aspects which can make this more challenging for autistic patients compared to non-autistic patients. Of these aspects, three were chosen to be investigated in this study: interoception; sensory sensitivities; and general communication with HCPs. The current study investigated these aspects by conducting semi- structured interviews with professionally diagnosed autistic adults who have contacted a HCP regarding their pain, and analysed the findings using interpretative phenomenological analysis (IPA). This study aimed to gain a deeper understanding of autistic adult’s difficulties when communicating pain to HCPs. Analysis found 10 master themes across participants, with main reports of negative experiences. Master themes shared across all participants highlighted: feeling unseen and unheard by HCPs; knowing communication and experience is different as an autistic person does not make things easier; a strong dislike for pain scales and difficulties with interoception; being misunderstood leads to invalidation and poor care; and unprofessionalism and incorrect care makes communicating harder. Findings to aid HCPs working with autistic patients and recommendations for future studies are discussed.