America in the Age of Diagnosis

In the following excerpt, Derek talks to Suzanne O’Sullivan about the issue of overdiagnosis in medical care today.

Derek Thompson: I’m so excited to have you here. This is a conversation I’ve wanted to have, a podcast I’ve wanted to produce for a long, long time.

I want to start with your very personal experience. You’ve been a doctor for more than 30 years. You’ve been a neurologist for 25 years. And in your book, you write that something has changed in those decades. There’s been a startling rise in people arriving at your office who have already been diagnosed with four, sometimes five chronic conditions. We’re talking about autism, Tourette’s, ADHD, migraines, depression, eating disorders, anxiety.

Before we get into theory, before we even begin to try to explain what’s going on here, I’d love you to just tell me, as a clinician, what have you seen? How would you describe this tsunami of diagnosis?

Suzanne O’Sullivan: Yeah, I mean, it is precisely because of my experience in the work I do with patients that I’m really worried about this. So as you say, I qualified in medicine in 1991. I’ve seen a lot of patients. I’m in full-time clinical practice. And I’ve seen this sort of trend that is really, really worrying me, and it’s really peaking over the last 10 years. And that’s where you have often very, very young people coming to see you, and they already have an existing kind of list of two or three medical diagnoses. And oftentimes, those diagnoses have very overlapping symptoms. So oftentimes, it even feels like people are getting multiple different diagnoses for the same problem.

And what worries me more about that trend is what is the purpose of diagnosis? Well, medical diagnosis is supposed to identify a problem so that you can be supported to make your life easier, or you can be cured, or you can meet a group of people who will make you feel supported through their shared experience, et cetera. And all of this should be making people feel better, but instead, what I’m seeing is people accruing long lists of medical diagnoses, and they’re not getting any better. Their lives don’t seem to be being made easier. Their symptoms don’t seem to be being alleviated.

So I feel like we’re falling into medicalization that’s potentially not necessarily labeling people who are not suffering, but those labels are not helping. And that’s the problem with over-medicalization and overdiagnosis. It is not to say that a person isn’t suffering. It is not to say that a person doesn’t need support. It asks the questions whether medical labels and medical treatment is the right kind of support.

Thompson: Let’s zoom in on a really specific example here, ADHD. You’ve seen patients with ADHD for decades, but in the U.K., as in the U.S., there’s been a huge increase in diagnosis. I think the U.K., I read, has seen a 400 percent increase in adults seeking an ADHD diagnosis just in the last few years.

Now, one possibility is that actual ADHD is skyrocketing. Another possibility is that underlying conditions are essentially flat, and we are surging—not the underlying phenomenon, but our diagnoses. Sticking with ADHD: First, before we begin to broaden this theory, what do you think is going on here?

O’Sullivan: OK. Well, let’s look at the trajectory of ADHD to try and understand it a little bit. So when I qualified as a doctor, ADHD only was diagnosed in children, and it was predominantly manifested as hyperactivity. It was first kind of conceptualized as a disorder in the late 1960s. It was called “hyperkinetic reaction of children.” It causes restlessness that tended to go away in adolescence.

Now, what happens with a medical diagnosis when you create it is, first it identifies the most typical sufferers and usually the most severe sufferers. And those 1960s, ’70s ADHD children—it wasn’t called that then—but those children were very hyperkinetic, very hyperactive. They could not settle at all, and they would’ve been evidently hyperactive to anybody who met them.

Now, what happens when you create a diagnosis like that is that people say, “OK, well maybe this comes in milder forms.” And that’s pretty much what’s been happening over the last 50 years, is that doctors have been redefining what it means to have ADHD in order to find people with milder forms of it. And this is like a really well-meaning, well-intentioned thing. So you assume that you, in the first instance, are only helping really severely disabled children. But maybe if you can find moderately disabled children, they will benefit as well. And then you say, “Well, maybe if you can find even milder symptoms and you help them, they will benefit even more.”

So, quite literally, ADHD has been renamed and redefined with the deliberate attempt of finding people with milder forms of that disorder. And the way you redefine these things is to begin with quite extreme symptoms, and they have to be present in a child who’s under a certain age. And then you say, “Well, maybe it happens to older children; let’s move that age upwards.” And maybe the symptoms aren’t all hyperactivity; maybe you just have attentional difficulties. So you keep just massaging the symptoms, raising the age at which the diagnosis can be made.

This excerpt has been edited and condensed.