There’s no doubt that ADHD is on the rise; more people are talking about it, more people are curious if they have it, and more people are getting diagnoses than perhaps ever before. Especially among adult populations. This is visible in doctors offices and therapy clinics, it’s visible in books and it’s especially visible on the internet. The number of google searches for ADHD has more than doubled since 2020, and it is a hugely popular domain on instagram and TikTok. Advertisements for ADHD are coming from all over the place, even Nightingale Counselling. An important question is “Why?” And a good follow up question is “What do we make of this?”
A Hidden Epidemic: The reality of undiagnosed ADHD
Two competing answers seem to dominate the popular understanding, both which make a lot of intuitive sense. The first is that ADHD has simply been UNDERrecognized and UNDERdiagnosed over the course of history. This line of thinking finds nothing unusual that there may be extremely high numbers of people with ADHD, and considers the real problem to be the fact that the medical system has failed them by not taking notice of this fact. This population is appropriately angry that a population of people with an illness may have gone unnecessarily untreated, that various problems in living could have been prevented if only the varying responsible arms of the medical system hadn’t failed them. This is rooted in at least two important premises which we will explore in this article:
that ADHD is a neurobiological divergence which is present from birth, and that the subjective lived experience of ADHD symptoms is a derivative of this. We’ll return to this shortly, but first let’s have a look at the second competing explanation for the rise of ADHD.
A label too many: How overdiagnosis of ADHD is doing more harm than good
There is an entirely opposing camp of people who are responding to the ADHD epidemic by claiming that it just isn’t real at all. This group sees the problem as one of OVERdiagnosis. For these observers it seems very unlikely that such a significant portion of the population would have a major, structural neurodivergence that is corrupting the fluidity of their lives, and has remained undetected for so long. The counter hypothesis is that these people don’t “really have ADHD”. In this case there is a kind of gatekeeping of ADHD going on, in which the same premise of the first group holds true: that ADHD is a concrete neurobiological disorder, but for this group they don’t believe that subjective experiences are necessarily direct symptoms of this divergence.
There are certainly other groups of explainers, some more moderate and some more extreme. I once asked somebody in the mens washroom of a pub (you’d have to hear the whole story) how many people he thought had ADHD and he said everyone. And I’ve certainly spoken to people who think the whole thing is a fraud from top to bottom. But for the purpose of this article we can leave those extremes aside.
A clinical snapshot
As we move to unpack these arguments and hopefully make some sense of this, I want to ask the reader to imagine the following person: maybe it’s easy because you know this person, or you yourself feel this way, but whether its difficult or not, let’s get into the subective experience of the ADHD-curious adult.
The typical story we hear in therapy goes something like this: a person has recently been confronted with the idea of ADHD. Of course, it’s not totally new. We all knew that hyperactive kid who got diagnosed in elementary school, and maybe we remember the ritalin and adderall that goes around in some circles. But even though it’s not new, there’s something fresh about the way it’s being talked about. On one hand, it’s everywhere. On social media, in my algorithmic-targeted-ads, my friends are talking about. But there’s something else, there are lists and lists of symptoms, and experiences, and memories, and difficulties that I didn’t think other people had experienced.
I’d never thought to ask actually, because I didn’t really know how to put words to it. So I spend a little more time looking through the material, and more and more I see myself in these examples and analogies. Things start to click, start to make sense. As I reflect on some of the major experiences in my life, good and bad, successes, failures, breakups, major decision-points, I start filtering into my old way of understanding my past a new way of thinking. I’m wondering if ADHD might have played a role. I wonder if things might have been different for me if this ADHD-thing had been known and handled differently.
These are huge questions. This is what I call the ADHD-experience, and I want us to keep it in mind so that we stay grounded while we unpack some of the sophisticated undercurrents to arguments which try to make sense of “why” this is happening and “what” it might mean.
Unpacking the controversy: A closer look at the arguments surrounding ADHD diagnosis
To start exploring an answer to that, we need to unpack a few things first.
1. “Subclinical disorders” and the Barnam effect.
2. Subjective experience and illness versus disease.
3. The evolution of illnesses
These three topics are a little complicated, but understanding the nuance of diagnosis and disease can help clinicians and clients make sense of the ADHD experience.
Disease versus Illness
The first thing worth discussing is the difference between disease and illness. In everyday language we tend to use them as a pretty simple synonym for eachother, without making much of a distinction. But in more technical medical usage, they are completely different. Disease is objective and illness is subjective. You can be sick without a disease, and you can have a disease without feeling sick!
Diseases are the name we give to biological problems in your body. A broken bone, a viral or bacterial infection, and neurodivergent brain structure, a disrupted digestive system, etc. Illness is the name we give to the feeling that I am unwell. Many of us, perhaps in any given week, will at time feel sick or unwell and it will have no connection to an underlying disease.
We tend to get that, intuitively, when it comes to small and non-persistent sick feelings. But the medical model, which so well takes care of us throughout our lives, is rooted in the premise that all illnesses are based in an underlying disease. Medical science has a history of mistreating people whose illnesses can’t be connected to an underlying disease. They are sometimes called fakers in the worst case. In another common extreme doctors and patients engage in a lifelong invasive search for the underlying disease. But that is a rabbit hole for another article. For our purposes what’s most important to take away from this idea is that society has a strong bias to understand persistent illness as likely being connected to an underlying disease, and there are some social misgivings and prejudices against illnesses which don’t have this validating and justifying foundation.
However, and despite this 150-200 year old bias, it’s just plain true that there are lots and lots of ways to feel really sick and crappy, or to have problems with our emotional and relational experiences in the world, that just don’t have their cause in a disease. (Where things get really complicated is that the physical body will often respond to subjective illness feelings, and start coping in deleterious ways which themselves make us feel sick, and this gets medical diagnosticians into a real chicken-or-the-egg situation about the disease/illness situation in the patient!)
So, in terms of ADHD, we can recognize that many people may feel the subjective experiences that are archetypal of ADHD. You’ve read the lists. And so there is a societal bias towards evaluating and understanding these as connected to an underlying disease.
But the bias is really strong, because people who conform successfully to medical illness models are rewarded, while those whose experience cannot conform are punished. There is not much neutral ground. If you’re illness is confirmed as a disease you will get respect, treatment, sympathy and accommodation and social support of all kinds. If your illness is not confirmed by the medical authorities… you are out of luck, and have to deal with your problem alone, probably with some feelings of shame. (There is a profound moral component here, but again, the moral aspect of illness will have to wait!)
Legitimating Subjective Experience
There is another trend in contemporary thinking which is counter to this in many ways: it is challenging to the ability of powerful authority figures to be the sole givers of legitimacy and validity. This line of thinking says instead that our subjective feelings are valid, regardless of what anyone else says. In so many ways this has been absolutely essential to our society. We see this everywhere, in social institutions as well as online, in our newfound value for the “lived experience” of ourselves and others, and in phrases such as “my truth”.
If I go to a baseball game that’s supposed to be fun, and I find myself miserable, that’s true and valid. It doesn’t go away because someone paternalistically reminds me that it was “supposed to be fun”. When this kind of thing gets out of hand we have a new and popular word for it called “gaslighting”. We no longer, as a society, think it’s acceptable to tell someone whether or not they’re feelings are valid.
But how does that intersect with medical diagnosis? In the above story about disease and illness we described a situation in which formal medical diagnosis, which reveals the underlying biological pathology in an illness, confers legitimacy and validity to a set of subjective illness experiences. How do we square this with our new ethics? Ultimately, it seems to me that society is still unsure how to navigate this, and I certainly won’t crack this quandary in this short article. But what’s worth pointing at is that many of us in society are currently in a moment of unusual friction and uncertainty about from where does legitimacy come from.
So I may ask you, thinking about our person with the ADHD-experience: are there own cognitive connections and analyses, symptom feelings, etc, sufficient for them to claim “ADHD”? Does feeling that I have ADHD mean I have ADHD? What is the meaning of diagnostic gatekeeping? What happens if the diagnostician tells me I don’t have ADHD? Who is right? What matters most in this situation?
I think most of us are primed to study this from an either-or situation. Either the doctors sense of the boundaries of ADHD are to be prioritized, or the subjective persons experience of ADHD is to be prioritized. There is a real winner and loser, zero sum antagonism in this approach, but it makes sense if we are rooted, as most people are, in the position we named in the beginning of the article, that ADHD is a stable, lifelong, neurobiological divergence: nothing more and nothing less.
I want to posit a third possibility: that we challenge instead this binary of ADHD as a disease. But that requires a lot of nuance.
The Shifting Borders of Illness
It is difficult to imagine challenging the very borders of what is and isn’t a disease because as a society we are so deeply situated in the biomedical model. The central hypothesis is that illnesses are diseases or nothing, and that all diseases have a biological explanation. Diseases in this sense are very much fixed entities that do not change over time or culture or anything. A broken tibia in Ancient Mesopotamia is a broken tibia on Tik Tok.
But let’s just say for a minute that it isn’t true, and in particular it’s not all that true with mental health. Let’s say that imagine someone who has really poor emotional coping skills has no problem in their brain, but life is nonetheless very difficult and uncompromising and they feel unwell most of the time. That person might feel sick and wish for treatment. If you think it reasonable that this person exists without an underlying disease, then we are on the same page. We don’t need to make any deeper challenge to biomedical practice than that.
So where does that put us? Well it means that we can have distinct feelings of unwellness which are not tied to eternally stable things like broken tibias. It means that we can have these really complex, persistent problems in living that really shift based on how we understand them.
The ADHD Story: Illnesses AND Diseases
Now let’s try to put these pieces together. ADHD, a few decades ago, was not very popular, at least not any more popular of a diagnosis than others in the diagnostics manuals. Let’s say that it was a quite strict diagnosis, and that people were given other labels if they didn’t quite fit the breadth and severity of old-ADHD. And let’s concede that this tightly-controlled population had a pretty high correlation to some sort of neurodivergent brain structure, that is to say they complied well with the biological explanation.
But now, ADHD is very popular, especially in terms of the subjective experience of illness. Many people resonate with this group of symptoms, far more so than other diagnostic categories and labels.
The first thing we see here is that ADHD has evolved. It has shifted from a top-down controlled “disease”, to something that many people feel really authentic about claiming as an illness.
So armed with these sophisticated ways of understanding disease and illness and subjectivity and biomedical objectivity… Perhaps a simple explanation for the growth of ADHD emerges, that it is in an expansion. The boundaries of what we legitimately experience as ADHD are growing. The kind of experiences that we once used to label in some other way, individuals all over the world are now finding it useful to label in this way. This argument lets us circumvent both the stories about OVERdiagnosing AND UNDERdiagnosing. We have entered a different landscape, where some ADHD cases are perhaps still connected to certain neurodivergent, and other ADHD-experiences are more rooted in a subjective illness experience.
But because of issues of legitimacy and validity, and the social and medical benefits of formal medical diagnosis, we are currently in a time of frenzy. Patients and doctors together are trying to catch up to a rapidly changing disease/illness. Perhaps it would have been more simple if the old-ADHD had stayed the same and some new word had been employed to talk about this subjective illness ADHD-experience, but this also would have served to elide the authentic overlapping of the disease and the illness. People who wish to protect what I am calling old-ADHD would like it purified of the illness-experience to more deeply legitimate those who pass the gates. And so on so forth, with arguments on all sides.
At Nightingale, we treat ADHD in this way: at a crossroads between illness and disease, and at a significant moment of evolutionary velocity, in which different patients, therapists, and doctors have different conceptions of what it is together.
ADHD is simply another way of organizing our life experience: our inner thoughts and feelings, our trajectories and our memories, our optimists and our pessimisms. And by providing a way to organize our life it also gives us pathways to improve it. Many people are stuck on whether or not the growth in ADHD is “real” or not, with politized arguments on both sides, but ultimately they are missing the most important point.
All subjectivities are valid. In therapy, thinking you have ADHD and organizing your life with an ADHD-label is good enough for us. We work from that position, and can help from that position. This obsession that so many people have with whether or not this persons illness or that persons illness, whether hers or his or mine, is connected to an underlying biological explanation has pretty marginal utility when it comes to an individual actually living a better life.
The biological diagnostics are pretty ambiguous, from my arms length experience, and they serve functions more of legitimating the diagnosis and providing access to medicine (which can be helpful to many) rather than serving a function of “proving” any sort of underlying neurodivergence. There is no brain scanning occurring in the everyday diagnosis of ADHD. So what people are really worried about isn’t the “truth” of the biological disease, but just the legitimacy and help and support that it confers. But we all deserve that whenever we feel unwell.