“5 signs you have ADHD”: The danger of misinformation on TikTok
Social media have become one of the major sources of communication and information worldwide, with trillions of bytes of information being exchanged every second online (He & Yu, 2021). While trending topics on social media tend to change according to several factors, such as country or age, health-related content has recently been trending all over the world, across all ages on all major social media platforms (i.e. Facebook, Instagram, and TikTok) (Yeung et al., 2022).
More specifically, Attention-Deficit/Hyperactivity Disorder (ADHD) has gained increased popularity on Tiktok, with thousands of users creating, sharing, and liking content aimed at spreading information, reducing stigma, and creating supportive communities for other users affected by ADHD (Greig, 2021). However, research conducted in the past few years has raised concerns about the validity of ADHD-related information on social media. In particular, a 2022 study analysing quality content on TikTok has found that about 52% of ADHD-related information on this platform is misleading (Yeung et al., 2022). But how are society and individuals affected by the persistent spread of misinformation on health-related topics and, in particular, on ADHD?
To understand this, we first have to take a step back and analyse the connection between ADHD and social media misinformation.
ADHD and social media misinformation
ADHD is generally defined as a disorder “characterised by detrimental levels of hyperactivity and distractibility,” which is frequently diagnosed in childhood and usually persists after adolescence, mainly affecting social and academic life (Gajaria et al., 2011, p. 15). However, an agreement has not been reached on the exact symptoms associated with ADHD, as most of them are highly common also to other disorders, such as generalised anxiety disorders and depression. As a consequence, the general population is left susceptible to confusion and misunderstandings about ADHD and its diagnosis (Jennings, 2021).
This confusion was confirmed by Gajaria et al. (2011), who analysed how ADHD is perceived on social media and showed that there is a large number of stereotypes associated with this disorder. For instance, a lot of people believe that reducing sugar intake is effective in reducing ADHD symptoms, while no causal relationship between these two variables has ever been established (Sciutto et al., 2015).
These false beliefs and stereotypes are defined as a type of disruptive information called misinformation, which, in contrast to fake news, is described as “false, but not created with the intention of causing harm”, meaning that those who are sharing it often believe the information to be true (He & Yu, 2021, p. 514). However, misinformation becomes particularly dangerous when landing on social media platforms, where it has the potential of rapidly spreading and reaching an increasingly large number of users. This is even more concerning when considering the role that social networks have now acquired in our daily life as a source of information.
A large number of studies analysing the use and the level of knowledge on social media have indeed shown that the majority of both adults and adolescents rate social networks as their primary source of information for healthcare (Bussing et al., 2012; Sciutto, 2015). Among others, Bussing et al. (2012) analysed ADHD knowledge in a multicultural sample of both adults and adolescents. The researchers found that the preferred source of information for ADHD was the Internet for both adolescents and parents (51.1%, sample size = 199 and 52.4%, n = 196, respectively, as shown in Table 1). However, Sciutto et al. (2015) showed that those who prefer social media as a source of information for ADHD, in particular have significantly lower strength of knowledge scores and hypothesised that this is due to the level of misinformation on ADHD on the Internet.
Table 1
ADHD information sources preferences for adolescents and parents, by adolescents’ ADHD risk status
Note. Adapted from Table 4 by Bussing et al. (2012, p. 597)
However, all of these studies were conducted about a decade ago, and they are not well representative of today’s social media and users. In particular, TikTok, rated the most downloaded app in 2020 and 2021 with more than 1 billion monthly active users, was only launched in 2017 (Gallagher, 2021; Yeung et al, 2022).
So why and how has TikTok become so popular for spreading information on ADHD?
TikTok and its algorithm
TikTok is a free social media platform where users create, watch, like, and share video clips of a maximum of 3 minutes. It is particularly popular among young people, with 60% of users estimated to be between the ages of 16 and 24 (Gallegher, 2021). These statistics are understandable in light of the findings by Bussing et al. (2012), who showed that adolescents significantly prefer visual information to written, as it is faster and easier to understand. However, the unicity of TikTok lies in its algorithm, which learns what a user likes through constant feedback given in the form of likes or through the “not interested” button. The selected content is then presented in the “For You Page” (FYP), giving priority to viral videos, which allows the user to feel part of a community. This enables people to share experiences, reduce stigma on matters such as mental illnesses and create support groups for people who may not have them in their daily life.
Hence, several researchers have suggested that the reason why people prefer the Internet, and specifically TikTok, to healthcare professionals lies in the ability to obtain peer support and empathy. This is particularly the case for ADHD, as the confusion associated with this disorder is directly correlated to a higher need to feel part of a community of people who share similar struggles and concerns (Gajaria et al., 2011; Gallagher et al., 2021).
But why is spreading misinformation about ADHD on TikTok so dangerous?
Confirmation bias and the risk of misdiagnosing
As previously shown, most people are confused about what ADHD is, which makes them susceptible to informational influence - the idea that, in ambiguous situations, people believe that others are better informed than them and, therefore, tend to follow their lead (Sherif, 1936). More specifically, in unclear situations, human beings tend to follow the lead of the majority. Since ADHD-related content is now viral on TikTok, users who are confused about ADHD are led to believe that what they see is true, as a lot of people agree with it. This places them at risk of confirmation bias - the idea that our attention focuses on what we believe to be true, further reinforcing our beliefs - and TikTok’s algorithm speeds and increases this risk by showing users similar content to what they interact with in an endless loop of misinformation (Suhr & Johnson, 2022).
It is, therefore, crucial to understand whether the information about ADHD that is spread on TikTok is truthful. Yeung et al. (2022), were the first to statistically analyse the top 100 most popular videos about ADHD on TikTok and assess their overall quality and understandability through The Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V) and the Journal of American Medical Association (JAMA) benchmark criteria. Several experts analysed the content and reached an 86% agreement (very high considering that it was about ADHD): 52% of the content was classified as misleading, 27% as personal experience, and only 21% as useful.
While these findings are already concerning, an important limitation to this study is that there is actually a fine line between what is misleading and what is not in the case of ADHD TikToks and even videos categorised as “useful or personal experience” could be misleading. This is because most ADHD videos on TikTok are titled something along the lines of “5 signs you have ADHD” and generally describe some of the symptoms that people with ADHD experience. As a consequence, users who experience similar symptoms often believe in having ADHD and self-diagnose. This is highly dangerous since, as explained by a recent article on the topic, “making a psychiatric diagnosis is a complicated process that often requires subtle distinctions. There is a big difference between experiencing symptoms and having a disorder” (Pugle, 2022).
The risk of self-diagnosis is, therefore, that of misdiagnosis, which can have severe consequences. Among many, Suhr and Johnson (2022) explained that misdiagnosis could lead to the development of an illness identity. The Common Sense Model of Illness demonstrates indeed that behaviours which become interpreted as symptoms of an illness “are then tied to expected illness outcomes”, which is what can be described as an illness identity (Suhr & Johnson, 2022, p. 260). As a consequence, an individual may have inaccurate illness-specific expectations and, in the case of ADHD, which is something that most people have to live with for their entire life, even believe that the “symptoms'' they are experiencing will persist for the rest of their lives. This is a form of self-handicapping since it is empirically proven that negative beliefs on an illness are highly likely to lead to worse neuropsychological outcomes. A great example of self-handicapping is the one provided by Suhr and Johnson (2022), who explained that there are several documented cases of patients with mild traumatic brain injury (mTBI) that believe their symptoms are incurable and forever-lasting and report worse symptoms a few months later, compared to other patients affected by mTBI who approach their situation with a more positive mindset.
Nevertheless, there are several other areas of one’s life that can be affected by health-related misinformation online, such as relationships and academic performance, that this article has not covered due to the lack of empirical analyses on ADHD-related content on TikTok. Moreover, while ADHD is now trending, similar misinformation is continuously spread on TikTok about other disorders, among which autism, depression, and obsessive-compulsive disorder are the most common. Unfortunately, not enough research on content related to these disorders has yet been conducted. However, the aim of this article is to spread awareness on the danger of misinformation that TikTok poses, in the hope of directing future studies toward an improvement of this social platform.
Finally, this article suggests that traditional methods of diagnosing and perhaps even treating disorders have been outgrown. With more and more people relying on the Internet and on social media platforms for healthcare issues, there seems to be a need to change and improve the way our healthcare system operates. Luckily, there are several researchers who are working on adapting new technologies to our preferences and needs. For instance, Ameer et al. (2022) have recently developed a sophisticated form of Artificial Intelligence that allows us to detect mental disorders by collecting data of a patient on social networks. While these findings have yet to be replicated and peer-reviewed in order to gain validity and be employed in the real-world, studies like the latter are not only encouraging and inspiring, but also have the potential to revolutionise the public health system.
*Edited by Samuel Jaffe
References
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