"You Can't Possibly Have ADHD": Exploring Validation and Tensions around Diagnosis within Unbounded ADHD Social Media Communities
Tessa Eagle, Kathryn E. Ringland · 2023 · Proceedings of the 25th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS 2023) · doi:10.1145/3597638.3608400
Summary
This paper examines how ADHD communities on social media platforms — TikTok, Twitter, and Instagram — function as informal health communities that provide information, validation, and support to individuals at various stages of discovering and navigating ADHD diagnosis. The researchers conducted a digital ethnography over approximately 18 months (early Summer 2021 to Winter 2022), with the first author immersing themselves in ADHD content across all three platforms, spending 15-20 hours per week collecting data through screenshots, saved posts, and memos. The study introduces the concept of "unbounded Online Health Communities" (unbounded-OHCs) to describe these social media-based health communities that differ from traditional OHCs in key ways: they are algorithmically driven rather than explicitly moderated, membership is fluid and not opt-in, people can encounter health content organically through algorithmic recommendation rather than intentional search, and no diagnosis or formal membership is required. The ADHD community on social media is vast — the #ADHD hashtag had 28.2 billion views on TikTok and 3.6 million posts on Instagram as of July 2023. Content creators include people with ADHD, healthcare providers, educators, coaches, and family members, creating a diverse ecosystem of information and shared experience.
Key findings
Three major themes emerged. First, regarding discovering ADHD and navigating diagnosis, the COVID-19 pandemic disrupted daily routines that had previously masked ADHD symptoms, leading many adults to recognize their neurodivergence through relatable social media content. Community members face significant diagnostic hurdles including complex multi-step administrative processes that are particularly challenging for people with executive dysfunction, fear of being seen as an imposter, medical gaslighting, and being told they "can't possibly have ADHD" because they are high-achieving, female, or do not match stereotypical presentations. Many report prior misdiagnoses (anxiety, depression, bipolar disorder). Second, navigating a neurotypical world creates ongoing tensions — community content addresses masking behaviors (hiding ADHD traits to appear "normal"), challenges with task initiation and motivation that neurotypicals dismiss as laziness, and the contested framing of ADHD as a "superpower" which many community members reject as minimizing their daily struggles. Third, these communities serve as powerful spaces for finding acceptance and validation — for many, social media is the first place they receive validation of their experiences, with content normalizing struggles around personal hygiene, organization, emotional regulation, and sensory experiences. The study also documents concerns about misinformation, with research showing 52% of ADHD-related TikTok videos contained misleading information.
Relevance
This research has important implications for how we understand disability communities in digital spaces and for the design of social media platforms. The concept of unbounded-OHCs provides a valuable framework for studying how health and disability communities form organically on mainstream platforms, distinct from traditional moderated forums. For accessibility researchers and practitioners, the study highlights that psychosocial disabilities like ADHD have been underserved by technology design — most ADHD-focused technology operates from a medical deficit model rather than a disability justice perspective. The findings challenge the gatekeeping of disability identity around formal diagnosis, noting that systemic barriers (cost, racial and gender bias in diagnostic criteria, limited provider availability) make formal diagnosis inaccessible to many. The paper calls for broadening research recruitment to include self-diagnosed individuals, designing with neurodivergent communities rather than for them, and addressing the tension between the value of lived-experience knowledge sharing and the risk of medical misinformation on social media platforms.
Tags: ADHD · neurodivergence · social media · online health communities · digital mental health · self-diagnosis · digital ethnography