A controversial take on self-diagnosis of ADHD

The argument for self-diagnosis to be valid is not unreasonable. In her excellent book, Unmasked, the highly insightful Ellie Middleton makes a very important point, in that many people have little choice but to self-diagnose due to the waiting times for getting an official diagnosis. And she’s right about that, it isn’t at all fair that people who have often already spent years of their lives facing extra challenges due to undiagnosed ADHD, should be expected to continue on without the help and support they need. If self-diagnosis gives them access to at least some of that help, then they should have it. In principle I fully agree with Ellie here.

However, in practical terms I fear that there is a longer term risk. Some people are seemingly self-diagnosing as ADHD when they are not ADHD. This matters, because in there is already a problem of doubt around the condition. There are some people who don’t believe it’s real – despite a clear medical expert consensus that it’s very real, and the fact that you can actually see the differences in multiple types of brain imaging technology (MRI, FMRI SPECT, PET, EEG, MEG, DTI). There are also many more people who accept it’s real but think “everyone is a bit ADHD these days”. This latter group results in ADHD being taken less seriously, impacting people who do have ADHD.

If the belief that “everyone is a bit ADHD these days” continues, then public opinion is likely to drift further away from agreeing that help and support are needed for ADHD challenge areas, and that change is needed in education and employment to improve outcomes for children and adults with ADHD. That change isn’t just about support, it’s also about accepting differences in thinking, and embracing some of the strengths that come with it (which are often currently restrained due to the ‘one size fits all’ approaches that schools and workplaces subscribe to). Positive change towards greater neuroinclusion requires public support – the more people that get on board with it, the more pressure authorities will be under to act.

There are also potential risks around negative changes. For example, ADHD is currently a protected characteristic under the Equality Act 2010, which helps to shield people with ADHD from discrimination e.g. dismissing someone from their workplace due to how their ADHD symptoms make them ‘different’, or protecting children with ADHD from bullying (which is unfortunately commonplace). Then you can add in general attitudes towards people with ADHD – whether that’s other children’s parents, HR, managers, colleagues, teachers, or anyone else. All of these factors are impacted by ‘surface knowledge’ of the condition – meaning the majority of the public are not going to go hunting for detail, they’re going to get the general gist of things and form an opinion, which will be either supportive or not.

There are already plenty of people who are of the belief that those with ADHD ‘hide behind’ their condition as an excuse, or to avoid accountability. There are beliefs that people use ADHD to cause unnecessary drama, take too much time off work*, etc… so if people who are not ADHD (but think they are) do in fact use it as justification for workplace challenges, then that will become the surface knowledge of ADHD for the people around them.

Swathes of people think ADHD is ‘just a fad’, or ‘a fashionable diagnosis’. The problem here is that they’re not entirely wrong – while there are many people who genuinely are ADHD and do not fit that criticism, there are also many who are not ADHD, but believe they are because of what they’re seeing online.

Social media has been a double-edged sword in this. It has spread greater awareness, and allowed people who are ADHD to find out about themselves, perhaps getting the support they need. But it has also led to significant numbers of people learning of a few common symptoms and then deciding they must therefore be ADHD.

One study found that half of the claims made about ADHD on TikTok were misleading, and I regularly see Ads on Facebook offering a ‘quiz’ to find out if you are ‘probably ADHD’. I tested one of them, adding answers that would not imply ADHD at all, and it came back telling me I had a very high likelyhood of being ADHD (so should therefore download and subscribe to their app).

This can also be unintentional. ADHD Chatter podcast host Alex Partridge recently wrote a book about some of his own experiences with ADHD – and then circulated this clip reading from the book. It’s a list of experiences that he says can be used to spot ADHD in women, in 25 seconds.

This not only recieved masses of views on multiple social media channels, but got national media coverage too. I’m sure Alex didn’t mean for that to be used as a diagnostic tool, but his words here are far too easily misinterpreted. Instead of being taken as spotting a woman who is ADHD through this list, some people began using it in reverse – resonating with the list and then deciding they must therefore be ADHD (as evidenced within some of the comments across the different social channels).

I personally know of someone who watched the clip and became convinced they are ADHD, and that their boyfriend must be, too. This person proceeded to take a lot of time off work for ADHD burnout. I am not a psychiatrist, but having reasonable knowledge of ADHD through my studies and living it, I would not have had either of them anywhere near the top of my list of potentially ADHD people that I know.

There’s a reason ADHD diagnosis takes an experienced and qualified professional many sessions, going through old school reports, interviewing friends and family, etc… and that process cannot be replicated in a 25 second list of experiences which could be had with or without ADHD. Please do not take this as ‘having a dig’ at Alex, he seems like a decent chap – but having seen a number of similar videos of his now, it would be helpful if he’d add some context in to guard against people using his content to self-diagnose.

It’s not just online, though – it’s every time I meet new people and the subject arises (which is a lot, because as soon as people ask me what I do, I tell them I’m researching ADHD). I attended an in-law’s 50th birthday party recently and had conversations with a number of people who all told me they thought they have ADHD – one or two of them might, the rest likely do not (in my unqualified, but relatively well-read on the matter, opinion)

It’s not surprising that so many people think they are ADHD, because of the way the symptoms work. Most people will experience some of the symptoms, some of the time. So when they see oversimplified checklists or short form videos reeling off a few traits, they will resonate with that and begin their journey of self-diagnosis. And again, for some of these people they will turn out to be ADHD. For many though, it’s unknown to them that the diagnosis is more about the intensity, and regularity that these traits occur which result in a person being ADHD or not.

Everyone will forget things sometimes, get distracted, experience emotional issues, act impulsively, feel restless, overthink and lose sleep through worrying, etc… but someone with ADHD will know nothing else but this – it’s a constant, for them. Taking distraction as an example, all people can be distracted – but people with ADHD get distracted a lot more easily, and far more often. And it’s not just external distractions either, it’s internal distractions – racing intrusive thoughts that keep popping into their heads and pulling them away from things like listening to what’s being said in a meeting, or whatever they are trying to read, or to work on.

One analogy is this: All people get sad sometimes. All people will have highs and lows. Often sadness will occur through environmental factors – things happening around them to make them feel down. Perhaps a friend didn’t message back, a pet died, the car broke down, or they had a bad day at work, and so on. But this does not make those people clinically depressed.

Or, as Professor Nancy Doyle writes: “It’s a little bit like saying to someone with chronic cluster migraines that “we all have headaches, don’t we?” And the answer is no, we don’t all have headaches like that.”

To summarise – I agree that people shouldn’t have to wait so long on the NHS to get a diagnosis, which leaves them stranded without the help and protections they need – but I don’t believe the right answer is for anyone who resonates with some ADHD traits to self-diagnose. With so many people so; ADHD challenges become diluted, continue to not be taken as seriously as they should be, and may lose the current set of support and protections they need – because public opinion is impacted by the amount of self-diagnosis, compounding the idea that ‘everyone is a bit ADHD these days’ which in turn affects policies and attitudes towards people with ADHD.

*Note on ADHD and too much time off work: My own, as yet unpublished research project suggests many employees with ADHD are actually less likely to take time off work, because they’re so conscious of their performance and how they are viewed, that they try to counterbalance as much as possible by ensuring they’re seen as reliable – showing a lot of resilience and working through it even when they are too ill.