Frederik: Welcome to the Sustainable Healthcare Podcast. My name is Frederik and I am your host. Today, I have recently been diagnosed with face blindness, and a lot of folks that hear about that think it’s some kind of joke, but it’s actually something that’s being investigated clinically. And I was recently found to be in one of these groups of folks that suffer from face blindness. It basically means that I have a very hard time recognizing faces. So instead I look at people’s clothing, the groups that they are in, the places they are and such to connect the dots and find out who’s who. All in all, I figured this could be an interesting episode for all of you dear listeners that care about healthcare and care about sustainability. So I invited Erling onto the show, and Erling, welcome to the show. Can you tell us a few words about yourself?

Erling: Thank you so much. Yes, I’m Erling Nørkær and I’m a psychologist and a PhD in psychology here at the University of Copenhagen. And I do research on face recognition, face processing, but in particular, as you say, face blindness or as we call it, prosopagnosia, so the lack of facial recognition ability.

Frederik: Super cool. Thanks a lot for coming on the show, Erling, and this is a bit of a special episode because it’s really me as a patient that’s sharing my journey with you as a clinician. Yeah, and we’ve never done an episode like this before. But before we dive into the subject matter, Erling, can you tell us a little bit more about yourself? What do you do when you’re not working in the Department of Psychology at University of Copenhagen?

Erling: Just want to say that it’s also the first time that one of my research participants has invited me on a podcast. So that’s a first for me as well. But that’s really great. Yeah, I mean, work-wise, I’m interested in the cognitive system and how we process things in our surroundings, how we make meaning of the world. And then outside of my day job, you could say I’m also a writer. I write fiction and at least your Danish listeners might have come across my name in that context. Yeah, so short stories, novels, poems and stuff like that.

Frederik: I did not know that. No, I’ll have to look that up. Yes, cool. So, Erling, the way I found out that I might want to get investigated clinically was when I was swimming with my kids at home and one of our neighbors who’s studying psychology was talking with me for hours. At one point, he has very long blonde hair, so he’s quite recognizable, a big guy, you know. And at one point he is waving at me and he has his hair up in a ponytail. And I don’t recognize him. And I said, you know, I’m terribly sorry because I know you so well. But somehow I have a very hard time recognizing faces, particularly if people change their hair like you just did. And then he said, that’s really interesting because I just had a class at university about face blindness and it sounds like you’re face blind, dude. With that in mind, he was like, so you should contact the department because they’re actually looking for people suffering from this to investigate it further. And it’s a really young field and there’s not a lot of knowledge about it. So you could actually contribute to some science here. And I found that to be really interesting. So I looked it up online and that’s how the two of us got in touch.

Erling: Yeah.

Frederik: That’s a very typical way of finding out. That’s what we hear a lot, that you have these everyday encounters with people, and then you might hear about it in the media, or through a friend or coworker or something.

Frederik: Yeah, and the thing is, you know, I just turned 37. At the day of recording, it was my birthday a week ago. Thank you. And I feel like I’ve had this my entire life, that I’ve barely been able to recognize photos of myself as a child and these kinds of things, and I never really realized that it was special in that way. I just thought I was not particularly good at that. And then during adulthood, I think at one point in time I just realized I’m just bad at this, I’m unable to recognize faces. And then I’ve kind of developed this feeling that maybe this is something where, when I get that weird feeling that people I don’t know are waving at me or I’m waving at people I don’t know, maybe there’s something to it. Yeah. And then it has been like a slow buildup into that full realization when I spoke to my neighbor. But maybe Erling, can you walk us through what is face blindness? How does it happen? Why does it happen?

Erling: Yeah, yeah. So traditionally, face blindness or prosopagnosia was actually discovered in patients with brain injury in the 1940s. The German neuropsychologist Joachim Bodamer described some patients with brain damage who had very specific problems with recognizing faces, not other objects. So he suggested that there might be a specific impairment of faces as a category. And then a few decades later, the British neuropsychologist [?] realized that there might be a developmental variant of prosopagnosia or face blindness because she assessed a child who had severely impaired facial recognition abilities, but who had no known brain injury or neurological illness. So she suggested that okay, there might be a developmental variant. And since then it has become apparent that some people just do not develop these super refined face processing abilities in the brain that most people do, because the thing about it, you know, most of us are actually sort of face experts. We are very, very good at discriminating and recognizing faces, most of us. And some people are even what we call super recognizers, so extremely good at discriminating faces from each other and recognizing people that they’ve only seen briefly. So it appears that it’s a spectrum, but on the lower end of the spectrum is what we refer to as face blindness or prosopagnosia. And I think face blindness is perhaps not the best label for it because it implies that it’s close to blindness, to not being able to see. But you can probably answer that better. But it’s my impression that people with prosopagnosia are able to see faces, but not recognize them and perhaps not discriminate them from each other.

Frederik: Yeah, I think it’s, when we ran through the diagnostics exercises, you gave me this one exercise where I have some time to look at six faces that are all cropped out. So they have on the same beanie, and they’re otherwise neutral. So I get no beard to orient myself towards, I get no hairstyle, I get no ears. You know, all of the funny business is gone and all I have is basically eyebrows, eyes, nose, mouth, cheeks and chin. Yes. And with that sort of composition of a face, most people and even most smartphones would be able to differentiate between those faces. Yeah, exactly. But to me, basically those six faces looked very similar. Yes. Only one of the six stood out to me. And then the whole exercise, you’re presented with a series of three images, of which you have seen one before as one of the six. Yeah. And to pick out which one of those have I just seen before is absolutely impossible for me. Sometimes I could get a notion that the person at the extreme upper left corner was somewhat recognizable for me, had like a weird nose. But the rest of them were completely indistinguishable also from the other faces. So they’re presented with some faces that I guess to a normal person look a little bit similar, but to me, look exactly the same, like I couldn’t even tell if it was the same person in all three images. Yeah, yeah, yeah. Which I think would be rather obvious to most people, that it wasn’t.

Erling: Yeah, yeah. I think so. But if you think about it, you know, if I had three apples lying in front of me on the table, I would probably find it hard to say what makes these three apples different, right? So it really says something about how trained we are with faces, most of us. So it’s not, I mean, and the faces don’t vary that much. I mean, they can vary quite a lot, but at least in the test you’re referring to, you know, it’s all cropped faces of white, younger, male individuals. So they are all quite similar by these characteristics. And so it is a quite taxing task that I put you on. And I think it’s also interesting that you mentioned that one of them, you had a feeling that you recognized because of a certain feature, a characteristic feature like a nose or something. That’s also something that people with prosopagnosia generally report: that for someone to stand out, they need to have a very characteristic feature or set of features. Something like a dimple or a mole or something like that. Yeah, yeah. But the face as a whole is not a good indicator of who someone is if you have prosopagnosia.

Frederik: No, no. And the problem is if you place that mole on somebody else, like I think Claudia Schiffer, I think, or that’s like a famous model that has a mole in her face. Yeah. And if you sort of got that mole on somebody else, to me, it’s the same person, you know?

Erling: Yeah, yeah, yeah. Okay, yeah. That’s really interesting actually. Yeah, we should test that somehow.

Frederik: Uh, it’s like, I would totally fall for the Superman/Clark Kent thing, when he takes off and puts on the glasses. I’d be like, oh, this, yeah, completely different person.

Erling: Yeah, yeah, yeah, yeah. And yeah, that’s a really good example actually. Because that is the theory we have from cognitive science and cognitive psychology: that we usually process faces as wholes. We do what is called holistic processing. So in the same way that if you read a quite long word, you basically process the whole word as one unit rather than individually walking through each letter. It’s kind of the same thing going on with faces. But it appears that perhaps that cognitive process is not, at least, it’s not default in prosopagnosia. That is something I’ve investigated a bit in my PhD work also.

Frederik: Uh, that’s super interesting. So there’s something about the way people like me are analyzing faces that’s more of a holistic, sort of compound effect of everything going on, whereas for most folks, they’d be able to just isolate the facial features and know who’s who.

Erling: Yeah, or somehow create a mental representation of the face as a whole, based on the configuration of these features. So it’s not that people are aware that, oh, these six faces, they are different in the distance between the eyebrows or the distance between the mouth and the nose. But it appears that all these features, all these configurations of features, create a whole representation that is quite distinct and quite distinguishable from other representations. Yeah, and that might be what is difficult.

Frederik: And then you gave me sort of another test exercise to check: is it just this, is it the form of the exercise that Frederik has a hard time doing? Yeah. And that exercise is, I’m presented with six grayscale cars. Yes, so there’s an SUV, there’s a sports car, there’s a sedan, there’s a little city car, you know, different kinds of car shapes. And then I’m presented with three cars, and I have to pick out the one that I just saw as one of the six. Yeah, and that also felt really difficult. Yeah, and but you could see in the results that it is just because the cars look somewhat similar and you’re like, okay, this one looks like it is the one that looked a bit like a Porsche. That’s the one that looked a bit like a Fiat. And then you’re kind of patching it up like that. You can say, I, there was definitely no car that looked like a tractor. You know? That’s not it. Yeah. You know, you’re kind of pattern recognizing your way through it. Yeah. And that also made me realize with the faces, I was actually looking at how the photos were cropped. Yes, so I was looking at sort of the shape of the cropping of the imagery. I’m like, this is clearly not what the exercise is about, but with the faces, I didn’t have the same feeling.

Erling: Yeah, it’s a great point because it goes to show that what you’re doing in the so-called face recognition test is not face recognition at all. It’s something else that you’re recognizing. So it seems that the cognitive process you are performing is something entirely different. And yeah, the car test, I mean, that is difficult because we are not really experts at cars. At least most of us are not. So that is a test that is difficult for everyone. And of course, I included it when I test people with suspected prosopagnosia, because we want to figure out: we want to disentangle whether this person has a recognition problem, a recognition deficit in general, or is it more specific to faces? And based on this, because you perform quite well on the car test, we can say that okay, it’s not just that you’re bad at recognizing things in general or taking this type of test. Yeah.

Frederik: Yeah, so we can’t blame the test format. No. And then, I mean, you had this one point that for many, this is something that runs in the family. So I think you said there’s a 50% chance that you all risk that you passed this on to your children.

Erling: Uh, that has been shown in some families that it runs via what we call autosomal genetic dominance. So basically, if one of your parents have developmental prosopagnosia, you might also have a 50% risk of getting it. But I think it’s not really clear whether there might be a genetic variant and then there might be a non-genetic variant. And I think we can’t really say because we don’t honestly know how this development, or lack of development, in early childhood happens. And I think it’s feasible that there might also be a relation to complications at birth, which is not something genetic, but something that just might happen. Which we know can produce other visual problems. And who knows, maybe environment can also play a role. So there might be a genetic variant and there might be a non-genetic variant. We don’t really know what percent.

Frederik: And how many, you know, if we are looking at the population as a whole, how many are suffering from it?

Erling: Yeah, so estimates say around one to three percent in some of the prevalence studies that have been made. However, I would say that of course depends on how we define the condition and how we classify individuals with it. So which test we use, which cutoffs we use on those tests to say that this person is face blind, this person is not, that of course statistically influences how common this condition is. But I think it’s safe to say that it is quite common. I mean, even if it’s 1% or just a half percent, that is also quite a lot of people who have such a severe impairment of facial recognition that it’s a problem in their everyday life. I would say that is the minimum.

Frederik: And what is sort of the range of the problem. So I mean, I’ve definitely myself, I have a strong feeling that I’ve learned to live with it, because I didn’t even recognize it as a problem as such. Yeah. So even though part of my day job is attending conferences, meeting people I’ve met somewhere else, and building relationships with them so that I can help them provide consulting services that can help them decarbonize their efforts in healthcare, I think one of my main fears is to appear rude from not recognizing someone I’ve met maybe several times before. Maybe I’ve even had meetings of several hours with people that I can’t recognize. Yeah, but most of the time I don’t recognize them, so I don’t experience the problem until someone is telling me, why didn’t you say hello to me or why, how come you didn’t come over and say hi, I was right in front of you? These kinds of things. And that’s extremely rare that I’m confronted like that because I think that’s also an awkward situation for the person that’s not being recognized. So yeah, I’m just curious to hear about the scale of the actual problem for people.

Erling: Yeah, yeah, yeah, yeah. I think the people who are most impaired by this, I think it is actually the fear of that confrontation. So basically the fear that every time you meet someone, whether it’s on the street or in the supermarket, or at your workplace or wherever, at a family gathering, every time you meet someone, this could potentially be someone you know really well and someone you are supposed to recognize. So you have that fear that maybe this person is gonna come and confront me and say, why don’t you recognize me? And of course it rarely happens because most people you meet on the street, you don’t know. But this fear, it can actually turn into a fear of social interactions in a way. I think that is, yeah. So it is, as you say, the awkwardness and the feeling of coming off as being arrogant. The fear of being perceived in that way is actually what causes this to be a problem in people’s lives. And a psychosocial problem and something that causes people to perhaps choose a job that relies less on social interactions and switching around in different social environments. But then I think you are an exception to this in the line of work you’ve chosen. And I’ve also talked to other people with prosopagnosia who say something similar: that it’s, I mean, it’s not a big deal. They just sort of fake it till they make it, and just go along with it and try to pretend that they recognize someone even though they don’t, and then they figure it out as they have a conversation. They figure out who this person is. So I think it’s very different. It varies a lot how people cope with this and how good their compensating strategies are. So luckily there’s a lot of ways to recognize someone outside of their face, right? So if you have well-developed compensating strategies, you can get by quite well socially.

Frederik: Yeah, so that’s maybe one of the reasons why I haven’t experienced it as a huge problem is that I’ve been able to develop good compensation strategies. Because I would say that within two minutes, maximum, I would know or have figured out who a person is that I’m talking to. And most of the time it’s probably eight seconds or ten seconds or something. For me to piece together the dots and figure out: then it’s probably this neighbor because we’re around my house and the person is tall, wearing a coat and there’s a child, you know? So then I’m able to piece things together relatively fast. Yeah, but not that instant face recognition that other people have. Yeah. And as long as we’re within that bandwidth of when it’s seconds and not minutes, I think it’s not experienced as severe. But you know, sometimes people can be lost in thought or daydreaming or something. It’s probably experienced something like that when you’re not being recognized. Yeah. Um, but I’m curious, do you think this could be a driver for other mental illnesses such as anxiety or loneliness or other things that we are seeing in modern society?

Erling: Uh, yeah, I definitely think so. There’s not a lot of research on that. But I think there is something in just our experience with this group, that there seems to be some what you could call comorbidities, so some overlaps with other diagnosis and other sort of clinical categories. But it’s difficult to say what causes what and these things. So it might be that you are bad with faces and because of that, you have a more limited social group and tend to isolate more. Or it could be the other way around. We don’t really know. And there’s also just something that has to do with your personality. So you can be an extroverted person with prosopagnosia who interacts with a lot of people and who just sort of gets around this little problem that they have and who don’t mind also telling people, oh, I have this problem with faces, and people usually understand. And so I think it’s interesting that there’s some overlap, but the research is yet to be done, I would say. But I think it’s interesting that it kind of underlines how important faces are in our society and how complex our social structures and contexts are, because I imagine that this might not have been such a big problem a hundred years ago, where you had a much more limited social circle and you could pretty much predict who people were based on where they physically were because you met someone where you worked or where you went to school or stuff like that. You didn’t run into them at the supermarket or in the airport or whatever. So the complexity of society means that this is a bigger problem today, and probably a problem that only exists in this type of society.

Frederik: Hmm. Yeah, that makes sense. And now, I mean, in our line of work in decarbonizing Care Pathways, there’s seven main levels for decarbonization. One of them is prevention. And I think here prevention isn’t quite possible as far as we know, or at least it’s to be decided. Then another area is early diagnosis. I don’t know how relevant that would be, but then it’s also early treatment. So I guess something we haven’t touched upon is: is there a way to treat this, or to develop better strategies for coping, or can it be unlearned?

Erling: Yeah, so those are great questions. I mean, yes, you can learn compensating strategies for sure. And I think that’s probably the best pathway to getting by with this in adulthood, I would say: learning how to recognize people based on other cues than their face. And also just getting used to disclosing this to other people and say, oh, I’m bad with faces, so do you mind just telling me your name? Or whatever. So that’s the sort of coping side of things. When it comes to actually training your facial recognition skills, unfortunately the efforts that have been done to that end have not really been successful. So there has been quite a few studies where they try to train people both with and without prosopagnosia to train their ability to process and recognize and discriminate faces. But it’s really, really hard to do. It is actually very, very small effects you reach and I think it’s related to the fact that your face processing skills develop so early in life. I mean, the first few months of your life are crucial to developing these face processing skills in the brain. Infants, four to six months old, are able to recognize the face of their parents. So it’s something that establishes very, very early in the brain. So I think that’s probably why it’s really hard to train in adulthood. But I think that’s really where we want to increase our interest: in how it develops, or not develops, in early childhood. So we actually have a project in the making where we are trying to investigate infants of parents with developmental prosopagnosia on the basis that okay, if this condition is hereditary, then we might be able to track some of the early neural markers of prosopagnosia in the infant brain. So we have this project where we are scanning babies when they look at faces and when they look at their mom’s face and stuff like that. So that is quite early days for that project, but it’s something that we need to do, that the field as a whole needs to do: to detect it earlier and thus to perhaps make early interventions or make some kind of treatment in early childhood.

Frederik: Yeah, I think, I mean, if my son has it, then it would also be helpful for me. I mean, now I have a toolbox and a language so I can tell him about it. And I think that will be a tremendous help. You know, when I meet people and I tell them, you know, I’m face blind, so when you’re changing your hair, I can’t recognize you, I’m sorry. A lot of the time there’s some mixture between an empathetic understanding, like, oh, I understand that, I’m sorry to hear, I’ll try and wave at you and say hi really loudly, you know, these things. Yeah. And other times there’s also sort of a discarding of it, where people are going, I also have a hard time attaching names to faces. Yeah, yeah, yeah, yeah. And I’m just quietly thinking to myself, I don’t think you understand. If you show me a photo of myself as a child that I’m not aware of, I wouldn’t be able to recognize myself.

Erling: Yeah, yeah. And that’s something entirely different than being unable to attach a name to a face, because most people are bad with names. It is super hard to remember names.

Frederik: Yeah, recognizing faces is a difficult discipline. Yeah. And it’s, you know, when I put it like that, people are sometimes going like, oh, yeah, I’m sorry, I didn’t mean it that way. And then it’s fine. And I don’t take offense myself personally. I just think it’s sometimes a bit tough when you’re hearing folks with neurodivergence and it’s being reproduced into normal people that don’t suffer from it. Like, yeah, I have OCD, in that I need my desk to be clean. That’s not OCD. That’s just liking to have a tidy desk. That’s fine. Yeah. So I’m trying to put that into conversations and into people being a bit more mindful about such things in general.

Erling: Yeah, that’s a good point. I think that’s also one of our interests as researchers: to raise awareness of this and just to inform people that this is actually a thing. And if we could make schools, care facilities, doctors’ offices more aware or more mindful to this, that would be tremendously useful I think. Yeah.

Frederik: I was at least really relieved to learn that it wasn’t something I made up, it wasn’t something in my head, you know, so in that way I’m really thankful and grateful that I could come into your center and assess whether I, I guess, I could call it a diagnosis? Am I diagnosed?

Erling: No, that’s the thing actually. It’s not a formal diagnosis in any of the diagnostic systems that we use in Denmark and in general in the Western world. It’s not something that has legal consequences. But it’s not something you can be diagnosed with at the doctor’s office. So we think of it as a neurodevelopmental condition, but not as a diagnosis. And then there’s quite a lot of debate in the research field whether it would be a good thing to try to establish this as a diagnosis, whether it should be included in the diagnostic manuals. And I would say I’m undecided on that, because I think before we reach that point, we need to figure out more what this is. So before we can probably label it as a diagnosis.

Frederik: I think that sounds very clever. So until further notice I can say I have a condition, but not a diagnosis exactly. But that is cool. Then I’ll check the status of my condition when the time is ripe. Um, thank you so much for coming on the show, Erling, and telling us more about this super interesting field. Or at least to me it’s really interesting. I hope you dear listeners will also have found it interesting. You have listened to an episode of the Sustainable Healthcare Podcast. Please like, subscribe, and share the episode as a mad person if you liked it. And please don’t hesitate to give us feedback. Tell us if there’s anyone you would like us to invite to the show or any topic you would like for us to cover. Today was a bit of a special episode, but we found it to be interesting and also to just disseminate some of the good science that’s going on in the realm of healthcare and mental disease and mental disorders. So we have found it to be relevant. We hope that you have also found it to be relevant. Without further ado, thank you so much for listening in and until next time, have a great day.