Learn Why It’s Vital to Not Exclude Prosopagnosia and Autism

What is prosopagnosia?

Prosopagnosia is an inability to learn and recognize faces. It’s also known as facial agnosia.

The word origins are modern Latin, from Greek prosōpon (“face”) + agnōsia (“lack of knowledge”).

The current article is mostly discussing what is usually referred to as either congenital prosopagnosia (which runs in families) or developmental prosopagnosia.

Developmental prosopagnosia is an inability to learn and recognize faces in the absence of relevant neurological injury or disease.

tl;dr

We’re going to discuss the prosopagnosia that people have their whole lives, and not from having had an acute brain injury.

Prosopagnosia Vignette

I have so many stories of my experience with prosopagnosia. Here is one.

I was working as a corporate float chaplain (don’t ask) in Minneapolis, and one day I needed to visit the corporate offices for a meeting. This was an historic building, a really old house turned into offices. The receptionist told me that the person I was there to see would be with me in a minute. I was waiting, glancing around, looking at the artwork on the walls.

It was then that I noticed somebody in an adjacent room, somewhat noticing me back. Now, I like to think I’m pretty good at detecting when someone else is queer, and my radar definitely went off for this person, so I felt confident that this was one of my people. I was surprised that we hadn’t met before, because I didn’t realize any other queer folks worked here, especially in the corporate office.

I tried not to stare, but made a few more glances just long enough to confirm my suspicions. Yep, definitely gay! They were still facing me so I smiled to be convey a friendly acknowledgement, as we do.

And then I realized…

Yeah. Look. I know how mirrors work, but because this was a corporate office I was not expecting door-sized mirrors. And the trim around the mirror was the same as around the doorways. It was far away, and I thought I was seeing a person through a doorway in another room. I really did not know that I was looking at myself, until I did.

 

I am behind the camera taking this pic of myself in that far-away mirror. It does look like I’m taking a picture of someone else in another room, doesn’t it? It’s strange for there to be a mirror there, as I think anyone would agree. The difference is that most people would recognize their own likeness looking back at them.

If you can imagine yourself having an experience like this, because you cannot recognize even your own face in a mirror, well then you might have prosopagnosia.

Historical Understanding of Prosopagnosia

We used to think prosopagnosia was super rare, and only caused by acute brain injury. In fact, the first peer-reviewed publication about a person who had prosopagnosia without neurological injury was written by a psychiatrist in 1976 (McConachie 1976).

In that single case study, McConachie wrote about A.B., a very bright, 12-year-old girl who had “social and psychological problems” (p.76) that, when taken along with the rest of the description of her experience, read very much like an autistic child to me. She kept to herself, went to a gifted school, had terrible penmanship, was “easily hurt by criticism” and was hospitalized often for gastrointestinal issues.

Amidst the pages of summary in this single case study, two more things jumped out at me, for both novelty and personal relatability: one is about getting lost and the other is about block design.

A.B. was given a “Map Test” and “had great difficulty with” it, and later describes how she gets lost near her home, and the author thinks A.B. would probably not be able to find her own way to school at age 12.

I too profoundly cannot navigate, and needed other kids to escort me to junior high school when I was 12. On the occasional days that I did not have an escort, I would get myself pretty lost.

The other thing that jumped out is that “A.B. obtained her highest Performance Scale score on the WISC on Block Design, as did (a related case as cited in an earlier paper)” (McConachie 1976:78).

I got a kick out of this because when I was diagnosed with prosopagnosia during a day-long neuropsychological testing session, block design was also my highest score. And I was proud of it and my autistic brain loves block design.

Fun fact: In 2010, my wife and I were married and had a block-design themed wedding. We actually had a more specifically themed wedding, relating to a certain vintage video game involving block design, but they’re pretty strict with copyright, so we’ll call it a block design themed wedding.

 

Ultimately, what McConachie concluded in her wisdom, in realizing that she had met a young girl with prosopagnosia who did not have brain disease or injury was prescient: “Perhaps the condition is more common that is presently thought” (McConachie 1976:82).

How common is prosopagnosia?

We don’t know the prevalence because the diagnostic criteria have been all over the road from super strict to very lenient. Inclusion criteria and exclusion criteria have varied across a wide range, and there has additionally been a wide range of heterogeneity in both acquired and developmental prosopagnosia.

The ballpark numbers that are commonly cited are that around 2% of the population has developmental prosopagnosia. This has always felt high to me. Surely such a prevalence number includes people with mild difficulty recognizing faces.

ADHD side note: I’m remembering the day that a woman from church with no filters who identifies as blind told me that I looked fat, and that I needed a haircut. In other words, perhaps people who have prosopagnosia (or so-called face blindness) might also have degrees of it along the same lines.

A recent study on a convenience sample (n=3116) found prevalence rates ranging from .13-2.95% when using a percentile approach, “with the most commonly used cutoffs by researchers having a prevalence rate of .45% (DeGutis et al. 2023:58).

One thing DeGutis et al. (2023) found evidence of was prosopagnosia being on a continuum, as opposed to being an all-of-nothing kind of thing. That makes sense to me and explains the sometimes-higher prevalence rates in earlier studies with more lenient inclusion criteria. Not everyone with prosopagnosia will be like me and potentially think they see somebody new only to discover it’s their own reflection in a mirror.

How do they know if someone has prosopagnosia?

There are subjective and objective ways to do these assessments. The objective measures include two very common ones. The first is the Famous Faces Memory Test (FFMT), and the second is the Cambridges Face Memory Test (CFMT).

Famous Faces Memory Test

What is the Famous Faces Memory Test? The test asks, for example, “Which face is Barack Obama? And then below the question are two, close-cropped, full-color images of a Black man’s face, cropped in so you cannot see hair or body, only their face.

In this test, for me, the right and the left options look the same. I see absolutely no reason to ever choose one photo over the other. You can also take the Famous Faces Memory Test online if you want.

 

I can tell who President Barack Obama is though, when I hear or see him on TV.

I find that he has an incredibly distinctive voice and pattern of speech. He also walks a certain way and shakes hands a certain way. Also, if he is dressed in presidential clothes (such as a suit with a U.S. flag lapel pin) and a clean shave, I will guess that the only Black man to ever be president is likely him.

But a photo of him without a clean shave, at a cookout in casual clothes, perhaps having gained weight? I would have absolutely no idea that it is him.

Cambridge Face Memory Test (CFMT)

What is the Cambridge Face Memory Test? Well, you can check it out for yourself online.

Benefits of CFMT include high internal reliability, and that there have been some other versions created such as CFMT-Chinese, CFMT-Australian (Barton, Corrow and Dalrymple 2016). The CFMT is still one of the most widely used tests of face familiarity.

That’s problematic in my opinion, because it uses adult White faces, which may not provide a fair assessment of familiarity for people who are not routinely looking at White adult faces. We know that socio-cultural factors such as race and ethnicity influence facial processing (Mishra et al. 2019).

I took the online version so that I could share this with you. As with the FFMT, none of these faces were meaningful to me at any point, in any orientation, and all I did was guess until the test was done.

 

The fact that most of you see different people in these images is utterly baffling to me, and I can only imagine how your lives must be different, interpersonally, given the ability to tell people apart from one another like that.

Exclusion Criteria with Autism?

One of the most common exclusion criteria for prosopagnosia is autism. Prosopagnosia is not in the DSM-V, and adults my age are not often diagnosed with autism. Here is how I was diagnosed with prosopagnosia.

While doing day-long neuropsych testing at the Boston VA, I had gone outside for a smoke break midday. I had told the guy that I get easily lost, so he had written down explicit instructions on how to return to our room, which I took with me. I was following those instructions back. And he was a nice guy, so he thought he would be helpful and greet me at the elevator upon my return, apparently.

He tells me that I noted him standing in my way, walked around him, and continued to follow the directions I was given back to our room, where I waited for him, as it was locked. Then, he came walking behind me from the elevator, puzzled, and asked, “Did you not just see me at the elevator back there?”

And when I heard the voice of the person I’d been talking to all day, I responded right away, “No, I didn’t.”

“Huh…” he said, intrigued. And he added a couple more tests into our afternoon, and eventually invited me to participate in a prosopagnosia study if I was interested.

To be clear, as of the time of this write-up, most U.S.-based clinicians will say that you are either autistic or you have developmental prosopagnosia, not both. Their rationale is mostly in what is billable, because my autism does not explain my profound prosopagnosia.

And does it matter? It’s just semantics, right?

Excluding prosopagnosia because someone is autistic matters to the extent that there are accommodations and strategies to cope with prosopagnosia, and one may not have access to them if excluded because they are also autistic.

Strategies to Cope with Prosopagnosia

There is no panacea, no cure, and no magical fix. Mostly, what you learn to do is to rely on cues from other sources of information. For example, you will closely note what someone is wearing, how their voice sounds, the color of their eyeglasses.

But what I very strongly recommend is that you seek reasonable accommodations in your school or workplace setting, and in your personal life. These can be life-changing supports, and they are so simple.

Reasonable accommodations for prosopagnosia from my personal experience

• Invite everyone to wear a nametag
• Ask everyone to say who they are at the beginning of each in-person encounter with you

Let me elaborate on that second one to model what it can look like in practice. Suppose you enter my office, and I don’t have prosopagnosia. In that case, you might say, “Hi, Erika. Do you want to go to lunch with me?”

Let’s do that now with the accommodation: “Hi, Erika. It’s Mark. Do you want to go to lunch with me?”

That’s the accommodation, that you say who you are, every single time.

And I will be honest. After a while, I will be able to recognize Mark by voice and then I will say “Hi, Mark!” after I hear, “Hi, Erika.” And if I do that, obviously then Mark can skip this accommodation that time.

That’s it.

That plus nametags is everything, and it is lifechanging for dealing with prosopagnosia.

Share this digital brochure with anyone you work with who would like more information. The shortlink to this exact page is urlqk.com/faces

Disability is a result of the interaction between us and the social world. Accessibility is about removing barriers. By colleagues wearing nametags and saying their names, someone with prosopagnosia can go from being very disabled by prosopagnosia, to not-at-all disabled by prosopagnosia.

Amazing, right?

Please note that by saying autistics cannot be diagnosed with prosopagnosia because one is an exclusion criterion of the other, psychologists are potentially denying people access to these reasonable accommodations. So, consider what is gained by upholding these exclusion criteria, really.

Want to discuss this topic? There is a thread about it on the facebook page.

 

References

• Barton, Jason, Sherryse Corrow and Kirsten Dalrymple. 2016. “Prosopagnosia: Current Perspectives.” Eye and Brain Volume 8:165-75. https://doi.org/10.2147/eb.s92838.
• DeGutis, Joseph, Kanisha Bahierathan, Katherine Barahona, EunMyoung Lee, Travis C. Evans, Hye Min Shin, Maruti Mishra, Jirapat Likitlersuang and Jeremy B. Wilmer. 2023. “What Is the Prevalence of Developmental Prosopagnosia? An Empirical Assessment of Different Diagnostic Cutoffs.” Cortex 161:51-64. https://doi.org/10.1016/j.cortex.2022.12.014.
• McConachie, Helen R. 1976. “Developmental Prosopagnosia. A Single Case Report.” Cortex 12(1):76-82. https://doi.org/10.1016/S0010-9452(76)80033-0.
• Mishra, Maruti V., Jirapat Likitlersuang, Jeremy B Wilmer, Sarah Cohan, Laura Germine and Joseph M. Degutis. 2019. “Gender Differences in Familiar Face Recognition and the Influence of Sociocultural Gender Inequality.” Scientific Reports 9(1). doi: https://doi.org/10.1038/s41598-019-54074-5.