Thank you to our member Brooke Hulsizer and stats expert Fabrizia Passaro for this article.
The story of this project started when I was on holiday sitting outside under the stars. I was chatting to a friend about the usual: life, friendships, culture and diagnoses. My friend was telling me about getting diagnosed with ADHD as a child and the recent frustration of having a friend suggest that she was incorrectly diagnosed.
“Why did she question your diagnosis?” I asked.
My friend shrugged. “She asked what I hyperfocus on, and I said I don’t. She said that people with ADHD always have a hyperfocus and maybe I was misdiagnosed.”
I was shocked. I had vague recollections of seeing “hyperfocus” as a term used on social media, but I knew that hyperfocus isn’t part of the diagnostic criteria for ADHD in either the DSM-V or the ICD-11. From a clinical point of view, not having a “hyperfocus” should never preclude someone from a diagnosis of ADHD. Furthermore, the concept of “hyperfocus” is rather poorly defined in the literature and is often used to describe different phenomena (Ashinoff & Abu-Akel, 2021). As of this publication, there is not enough evidence for hyperfocus to be part of the diagnostic criteria for ADHD.
What surprised me most was the fact that a non-clinical individual had challenged a professional diagnosis based on a term they had likely learned about on social media.
Simultaneously, my NHS team and I were noticing a large increase in the number of people inquiring about ADHD at the GP surgery, while the ADHD waiting list grew longer and longer. Overall, the data shows that the NHS is struggling to meet the demand for ADHD diagnoses across the UK (Foster & Crew, 2024). This not only impacts waiting times, but also creates concerns about financial burden on NHS trusts.
People of all ages are making appointments with their GP to ask the same question: “Do I have ADHD?” Oftentimes these patients name symptoms that don’t align with the diagnostic criteria. As a collective, my colleagues and I started wondering what was causing this influx of individuals seeking a diagnosis and where they were hearing about some of these rogue symptoms. I had a hunch that social media platforms like Instagram and TikTok have likely been causing a lot of confusion, but it just wasn’t clear how much misleading content about ADHD symptomatology is out there. I decided it was time to figure it out.
I recruited Fabrizia, my friend and stats expert, and together we analysed both TikTok and Instagram for each platforms’ 100 top posts about ADHD symptomatology. These 200 posts were gathered using a social listening tool as well as the search tool on a clean account unaffected by historical algorithms. Only posts that contained information about ADHD traits/symptoms were included, and we looked at the following factors for each post:
We found that overall, only 17.5% of posts analysed contained symptoms that fully align with the DSM-V or ICD-11. This means that 82.5% of posts analysed contained misleading information about diagnostic symptomology regarding ADHD.
Of the content creators:
We also learned that 84.5% of these content creators were selling ADHD-related products, which suggests that they could profit from suggesting their viewers might have ADHD.
There are pros and cons to non-professionals with lived experience sharing informational content about neurodiversity and mental health. Lived experience can provide valuable perspective and may help the general public learn about diagnoses in a way that is relatable and easy to understand. However, individuals without any mental health training may not be able to differentiate between true symptoms and their own unique personality traits. This can lead to misinformation and confusion among the general public about diagnostic symptoms.
There were some recurring themes of misleading information in the online content that appeared in multiple posts both on Instagram and TikTok. These include a combination of symptoms that have a small evidence-base for occurring more often in individuals diagnosed with ADHD as well as irrelevant symptoms. Some of these recurring themes include:
It seems clear from the data that social media content can pathologise normal human behaviour while attempting to describe ADHD. This has greater societal implications as it sends the message to viewers that if they relate to certain behaviour, there could be something “wrong” with them that needs to be diagnosed. “Rejection sensitivity” is a great example of this. Despite what social media posts might say, most people experience an adverse reaction when they feel rejected. The reality is that being sensitive to rejection is a normal part of the human sociological experience, and there can be negative repercussions when people are led to believe that this phenomena in their life means something might be “wrong” with them.
The other issue that comes up is the question of secondary symptoms. While it’s possible that people with ADHD might feel more sensitive to rejection for various reasons, there is not enough evidence that rejection sensitivity should be part of the diagnostic criteria. However, an individual could still experience rejection sensitivity as secondary to a primary symptom of their ADHD.
For example, someone who struggles with focus might get lower grades than they would like. This person might then feel sensitive when criticism about their grades or intelligence is discussed. In this case, we could theorize that rejection sensitivity might be tied to this person’s lack of focus but would not necessarily be part of the clinical implication for diagnosis. While “rejection sensitivity” is generally within the realm of normal human social behaviour, an abnormally elevated amount of rejection sensitivity could be ADHD-related or it could be tied to other issues such as complex trauma, anxiety, low mood, etc. Some of these posts discuss issues that can be secondary symptoms of ADHD, but many viewers won’t have the skills to differentiate between primary and secondary symptoms and thus could incorrectly believe they qualify for a diagnosis.
As the waiting lists for ADHD assessment grow longer and the amount of ADHD content online keeps increasing, we naturally ask “why do all of these people want to be diagnosed with ADHD? And why do they think they might have ADHD in the first place?”. It is true that our current society holds more awareness and less stigma towards mental health diagnoses overall. However, it’s natural to hypothesise that our post-modern society might lead people to incorrectly believe that there is something “wrong” with them. Capitalism and “the society of performance” demands that we be constantly productive. A quick internet research reveals that we are constantly bombarded with content that prompts us to be productive constantly. There is always a new time-management skill, a new productivity tip, or a product that will allegedly help us achieve our goals. However, at the same time, the online world keeps us constantly distracted. A study by Small et al (2020) suggests that there is a link between the use of digital technology and symptoms of ADHD. In a world where our flows are constantly interrupted by notifications, phone calls, messages and the entire online world being only one click away, productivity becomes harder and harder.
This dichotomy might make people feel inadequate in a society that wants them to maximize productivity while simultaneously sabotaging their productivity. This combined with the Barnum effect, (the cognitive bias whereby individuals believe that vague and general statements about their personality specifically apply to them) creates the perfect environment that encourages people to identify with ADHD symptoms and believe they finally found an answer to their dissatisfaction and lack of productivity.
As counsellors, it’s not uncommon for our clients to ask us, “What’s wrong with me?”. While there are cases of clinical impairment where a DSM diagnosis might be indicated and necessary, there are other times that our clients simply need to hear, “Nothing is wrong with you; you are okay exactly as you are”. Sometimes, our role as practitioners is to help people understand that life can be full of pain, difficult feelings, mistakes and quirks that mean we’re simply human - no diagnosis needed.
References
Foster, A. & Crew, J. (2024, April 4). NHS cannot meet autism or ADHD demand, report says. BBC News. https://www.bbc.co.uk/news/health-68725973
Ashinoff, B. K., & Abu-Akel, A. (2021). Hyperfocus: the forgotten frontier of attention. Psychological research, 85(1), 119. https://doi.org/10.1007/s00426-019-01245-8
Small, G. W., Lee, J., Kaufman, A., Jalil, J., Siddarth, P., Gaddipati, H., Moody, T. D., & Bookheimer, S. Y. (2020). Brain health consequences of digital technology use. Dialogues in clinical neuroscience, 22(2), 179-187. https://doi.org/10.31887/DCNS.2020.22.2/gsmall
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