"You Can't Possibly Have ADHD": Exploring Validation and Tensions around Diagnosis within Unbounded ADHD Social Media Communities

Abstract

Despite a common misconception that Attention-Deficit Hyperactivity Disorder (ADHD) is a childhood disorder, symptoms often persist into adulthood and many adults remain undiagnosed for a variety of reasons. Increased adoption of social media such as Instagram, TikTok, and Twitter has led to increased representation of neurodivergent community members with ADHD. As a result of the COVID-19 pandemic and increased social media use, many have come to recognize themselves in content made by social media members with ADHD and thus sought diagnoses of their own. Social media provides a valuable source of information, first-hand experiences, support, and validation through shared experiences. These networks, which we call "unbounded Online Health Communities", have encouraged patients to advocate for themselves using information and support they have received from online ADHD communities. To understand these communities better and privilege the lived experiences of people with ADHD, we conduct a digital ethnography of three social media platforms to explore community content, specifically around acceptance, diagnoses, and tensions with the medical community. We discuss these informal online health communities as a source of knowledge, different, but no less important than that of traditional Online Health Communities and further the view of these communities as a valuable resource of shared expertise.