When ADHD Goes Viral: Social Media and Misinformation

Since the pandemic, the rise of ADHD content on social media has been meteoric, from the emergence of TikTok and short-form videos (anywhere from 15 seconds to 3 minutes) discussing ADHD, to “infographics” on Instagram. In 2021, TikTok videos with #ADHD were at 7.1 billion views. As of July 2023, #ADHD had 28.2 billion views on TikTok and 3.6 million on Instagram. The pandemic itself — with its resulting isolation, disruptions in routine, increased stress, and more time online — led to more claustrophobic self-examination and increased awareness of ADHD.Zebib K. Abraham, MDAt the same time, social media itself has led to fracturing of attention. In this environment of increased ADHD content and increased stress, social media may help patients educate themselves, build community, reduce stigma, and find validation. However, it may also be a breeding ground for misinformation. Increased ADHD content has coincided with more patients presenting with inattention. Patients, new or preexisting, may sheepishly bring up a post they viewed on social media suggesting they have ADHD. Patients may identify as “self-diagnosed.” This influx of patients reporting inattention has been overwhelming and frustrating for many clinicians. We want to help patients with ADHD also differentiate ADHD from other diagnoses, as well as the general worsening of attention. Clinicians may see social media ADHD content as questionable or invalid. The reality of it is much more complex.BenefitsThe benefits of social media content about ADHD are significant. Patients can actively seek scientific and reputable sources, but their first encounter with ADHD content may be an accidental, organic encounter. Posts that spark insight into patterns of inattention may be revelatory for patients, allowing more self-understanding, validation, reduced shame, hope, and a sense of connection, as well as introducing useful coping strategies from others with lived experiences of ADHD. ADHD content on social media may compensate for a lack of available online information, a lack of emotional support, and inaccessible and unaffordable treatment. Marginalized groups, in particular, have had trouble accessing care and have been invalidated by the healthcare system. Social media content may allow more self-efficacy in accepting and coping with inattention, and more health literacy. MisinformationResearch has shown that half of TikTok posts discussing ADHD contain misinformation. Misinformation has been defined here as content that does not align with DSM-5 or ICD-11 symptoms. Content is deemed misinformation or misleading if symptoms discussed are not specific and diagnostic, including understudied symptoms such as “rejection sensitivity” or “hyper-focus.” Social media posts often contain symptoms that are too generalized and can mislead patients into believing they have ADHD when their symptoms may be signs of other disorders — or even normal human experience. Anecdotal evidence can be relatable but also highly individualized.A study of 100 TikTok videos with ADHD hashtags showed these videos collectively had 500 million views. Of this group of videos, 48.7% accurately reflected DSM-5 symptoms of ADHD. Of those that did not, 42% were deemed a transdiagnostic symptom that could reflect multiple disorders, and 68.5% were deemed reflective of normal human experience. In the same study, 93.9% of the videos didn’t reference any sources, and only 1.6% were from mental health professionals (with no information about license status). Another study of 100 TikTok videos showed that 52 of them were classified as misleading; 49 of those 52 (94%) were uploaded by non-healthcare professionals. Additionally, in studies of people who were a) self-diagnosed, b) formally diagnosed, or c) without a diagnosis, those with self-diagnosis of ADHD give higher estimates of ADHD prevalence than those with or without a formal diagnosis. Those with less ADHD knowledge were more confident in their knowledge.Social media content lacks vetting, quality control, or moderation. This allows more misinformation and unlimited propagation of this misinformation. A formal diagnosis requires time, effort, and nuance, formulated by gathering a developmental history, behavioral observations, standardized testing, and multiple collateral sources. A formal diagnosis requires a fuller picture and provides an official route to treatment and accommodation.Psychology of Social MediaSocial media platforms are not designed as neutral platforms for community building, but as algorithmically driven, addictive, profit-motivated machines. Therefore, engagement is valued over quality. Content aims to engage a customer — via simplification, exaggeration, and entertainment. Such content is more memorable and is perceived as more credible. This economic model reinforces potential logic traps, leading to echo chambers and confirmation bias. Financial incentives such as product advertisement can drive content.Clinician BiasThe gut instinct of a clinician may be to dismiss what patients see on social media, due to concerns of inaccuracy and misattributing symptoms. We may see social media as “good or bad” — helpful for building community and self-awareness or threatening to our professional expertise and authority.A patient can experience freedom and improved self-esteem through social media discussions of ADHD. In a study of those with self-diagnosis of ADHD, these participants were biased toward believing ADHD content, but were also just as likely as formally diagnosed participants to watch an optional video of a psychologist educating them on ADHD. This suggests that young adults are interested in both social media content and learning from professionals. The way we define misinformation supposes there is one distinct perspective through which we can discuss and define ADHD, based on disorder-based models and DSM-5/ICD-11 criteria. Some research suggests alternative models, including neurodiversity as a variation of human experience, and defining ADHD less categorically and more as a spectrum. Even “those who fall just below or near the diagnostic threshold” can share their lived experiences and benefit from support. Next StepsAs clinicians, we must educate our patients and ourselves about social media ADHD content. We can work with the tide of social media or against it. Adolescents report higher therapeutic alliance with professionals competent in social media. A qualitative study of young people in the UK showed that patients are looking for trustworthy digital resources, with task management and habit-building skills. They desire information that is easily accessible, quick, and co-produced with those with ADHD.Content verification, expert tagging, and warnings of unverified health content would be very useful, such as we see on YouTube. We discuss specific posts with patients if they bring them up. We can create our own social media content as mental health professionals. Patients may not just value ADHD content for its accuracy, but as a means to feel seen, understood, and validated via videos and posts that are relatable, genuine, and vulnerable. We can view social media ADHD content as a parallel support system, but one critical mantra should be top of mind: Patients need to be counseled to research accurate and verified sources as they seek healthcare online.Zebib K. Abraham, MD, is a board-certified psychiatrist trained in adult psychiatry, with an MD from Weill Cornell Medical College and residency at Mount Sinai. She also holds an MFA in Creative Writing from the University of Edinburgh. She treats a range of conditions including anxiety, depression, OCD, ADHD, and trauma-related disorders, and takes a holistic, patient-centered approach that integrates psychodynamic therapy, cognitive behavioral therapy, and dialectical behavior therapy.