Social media makes therapy speak mainstream – but can also muddle the boundaries. So where does awareness end and misdiagnosis begin?

Contact talked to Dr Marjolein Kammers, a Senior Lecturer in Clinical Neuropsychology and registered psychologist, to get her thoughts on how people can use online content as a starting point – not a diagnosis – and take steps towards understanding and managing their unique challenges. 

How has social media changed people’s knowledge of complex neurodevelopmental conditions like Attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD)? 

It has increased people’s awareness of neurodevelopmental conditions and I think that is a good thing. Together with the neuro-affirming movement it has removed some of the stigma, started important conversations and hopefully empowered people to seek help when needed.

I sometimes wonder, though, whether the increased awareness has also led to a better understanding of these conditions. Social media content and artificial intelligence (AI) are not always accurate and that can create problems when people base their understanding solely on those channels. 

What are the challenges with portrayals of ADHD and ASD on social media? 

Challenges arise when the content is merely anecdotal and not representative of the condition. For example, in 2022 a research paper analysed the 100 most popular user-generated TikTok videos about ADHD. Of the 100 videos, half (52%) were classified by experts as misleading. “Clinicians should be aware of the widespread dissemination of health misinformation on social media platforms and its potential impact on clinical care,” the authors concluded. Another study has shown that these videos are nevertheless shaping perceptions of ADHD among young people.  

This is where you get discrepancies between formal neuropsychological diagnostic criteria, self-diagnosis and symptom recognition. In my clinical experience, this can lead to confusion and sometimes frustration when a person feels they have a particular condition based on TikTok but does not meet the diagnostic criteria.

We should never diminish a person’s subjective experience, but not meeting diagnostic criteria means that there are likely other contributing factors to their presenting problems.

The goal of an assessment is therefore not to invalidate subjective experience but to understand the underlying mechanisms. Neuropsychological assessments are based on a scientific model and use multi-informant information to create a holistic understanding of a person’s functioning.

Creators often talk about ‘hyper-fixation’ in the context of ADHD or neurodivergence. Is this a clinically recognised term? And what’s the difference between hyper-focus and being obsessed with something? 

Hyper-fixation is not a clinically recognised term but it’s a good example of a community-driven term used to describe an experience that many people living with ADHD share. Hyper-fixation is often used to describe an intense state of focus on something to the point that it’s taking over attention for other input or information for a period of time. There is also the term ‘hyper-focus’ which is sometimes referenced in ADHD research but it’s not an official diagnostic criterion.  

When I talk to my clients about hyper-focus and hyper-fixation, the exact term is not the main point, but the subjective experience that it tries to capture is. Hence, it is crucial to ask what this term means for the client and ask for examples of how this shows up in everyday life for this person and how much it impacts their everyday functioning.

For example, I often make the distinction that hyper-focus is the not-always voluntary state of being absorbed in an activity to the extent that it might get in the way of other goals or tasks. 

‘Obsession’ in this context is more involuntary, intrusive and often upsetting and linked to clinical disorders like obsessive compulsive disorder (OCD).

Passion on the other hand is a more voluntary or chosen enthusiasm for an activity or topic which in general does not get in the way of a person’s other goals. Within autism we often talk about ‘special interests’, which is not the same as hyper-focus. It is an interest in a specific topic for a long period of time, where the child or adult reaches a level of mastery on the topic, and which can also provide emotional comfort in social interactions.

If someone struggles with concentration and attention, does it really matter if they meet the formal ADHD diagnostic criteria? 

Having trouble with finishing tasks doesn’t automatically mean we have ADHD, but why not? Because there can be many different contributing factors behind that struggle.  

In the case of task completion, it might be attention or executive functioning, but it can also be shaped by other things like lack of sleep, anxiety, depression or high stress levels. 

From a behavioural point of view, it might look the same, but the underlying mechanisms can be very different. If we don’t get the underlying cause right, we won’t be able to put useful, targeted intervention strategies in place. 

Whether or not someone meets the diagnostic criteria of a neurodevelopmental condition, the goal is always to understand and validate a person’s subjective experience and then help them navigate any challenges they are experiencing. We can only support a person if we understand what is creating or driving the presenting problems. It is important to know whether you meet the diagnostic criteria, so we can access evidence-based support.

So, if you’re struggling, the first step is to get clarity on why – then you can get a better idea of what might help you to overcome this.  

Tell us more about psychoeducation and how you implement it in your practice.  

Content on social media about mental health and neurodevelopmental conditions can do many things: entertain, share personal experiences, reduce stigma, provide people with tips and tricks. But there’s also a lot of misleading information out there and we need to be aware of the widespread dissemination of health misinformation online.  

Hence, in my clinical practice I am very open about online content. Sometimes clients will have a particular TikTok video that really resonated with them, and then we’ll watch it together. Even if that clip is misleading, it’s still important for me as their psychologist to understand why it resonated with them.

Reflecting on that social content in a session can provide valuable insight into the concerns and unanswered questions my client might have. I will then also discuss whether that clip is in line with the latest scientific understanding and best practice guidelines, to equip my client to become a critical consumer of this type of content.

I really believe that part of my role is to empower my clients by providing quality psychoeducation.  

What’s your advice to people engaging with online content that may be misleading? 

First, ask yourself why you are watching that particular clip, or why you are asking AI if you might have a certain condition? Are you finding it entertaining? Are you curious? Are you concerned and struggling and you are looking for answers? If the latter is the case, do not stop looking for answers, but be aware of what you’re looking for, why and where you’re looking for those answers. Be critical of the content you consume.

And remember, neurodevelopmental conditions are complex. There are so many different factors that contribute to our daily functioning – no single online video can capture this. Your experience is unique and deserves careful consideration, broad understanding and knowledge and targeted strategies from a professional in case you are struggling and experiencing significant daily functional impact.  

If in doubt, get real information and proper answers, because that is the best way to ensure you get the best support.