The role of social media in self-diagnosing ADHD: Insights from Science or Fiction Live

Is the ADHD-related content we see on TikTok accurate? Should we be concerned about rising rates of ADHD self-diagnosis? Questions like these have been of increasing concern to young people, as ADHD-related content propagates on social media.

These questions were explored on the 28 October 2024, where 60 in-person attendees and 100 online viewers settled in to watch the first live recording of The Science or Fiction Podcast: “Self-diagnosing ADHD: social media, statistics and everything in-between”.

Hosted by Dr Kathryn Bates, Research Fellow at the IoPPN, and youth advisor Mariam Shah, the event featured experts in the field: Professor Ellie Dommett, leader of the ADHD Research Lab at the IoPPN, and Shauna Campbell, Podcast Director at ADHD Babes.

With insights from research and lived experience, what followed was an exploration into the complex role of social media in the phenomenon of increasing ADHD self-diagnosis. So, what were the key takeaways from the event?

Self-diagnosis: A cause for concern?

As an increasing amount of ADHD-related information gathers on our social media feeds, many people have begun to identify symptoms of ADHD in themselves. A key topic discussed on the podcast focused on whether we should be alarmed about rising rates of self-diagnosis.

In the media, self-diagnosis is often conveyed negatively:

“Teens are using social media to diagnose themselves with ADHD, autism and more. Parents are alarmed” (CNN, July 2023).

However, the experts offered a more balanced perspective. Both Shauna and Ellie reflected that self-diagnosis is a crucial first step in recognising that you need support. As Ellie puts it:

The discussion emphasised the role of self-diagnosis in helping individuals to understand themselves better. It was argued that the risks of not self-diagnosing – such as lack of adequate support – greatly outweigh the risks of self-diagnosing. Self-diagnosis was framed in an alternative light, as a means through which individuals can feel more comfortable in their own skin, accept what makes them different, and flourish.

Can social media be used as a tool to learn about ADHD?

Another key talking point during the event focused on the quality of the ADHD-related content shared on social media. Co-host Maryam Shah outlined a study indicating that 52% of the most popular ADHD-related content on TikTok is misleading.

The experts weighed in, with Ellie highlighting that the complex nature of ADHD symptoms make social media – particularly it’s short-form nature – a less-than-ideal medium to communicate the nuances of the disorder. In this way, misinformation about the disorder can propagate, as the complexities of ADHD are lost to oversimplified snippets of information.

Shauna added that this quick-style approach often perpetuates the rhetoric that “everyone has a little bit of ADHD”. This can downplay the everyday struggles of those who do have ADHD, for whom symptoms can have a major impact on their quality of life.

It is therefore essential that mental health-related content on social media is appraised with a critical eye. As Ellie puts it:

Ultimately, while social media can provide a starting point for information about ADHD, individuals should seek out information from multiple, evidence-based sources to fully understand the complexities of the disorder.

Take-home message

Social media platforms have made it easier than ever to access a wealth of information about the nuances of a range of different mental and physical health conditions, including ADHD. While this content can provide a valuable resource for learning, it’s important that short-form, ADHD-related content is approached with a critical eye. We need to shift our perspective on self-diagnosis of ADHD: it may be a requirement for some of us to better understand ourselves, embrace our differences, and to seek support.

The event was funded by the Economic and Social Research Council (ESRC) as part of the ESRC Festival of Social Science 2024.