Note: Names have been changed to protect the privacy of those involved.
When I went on a six-week long teen group trip to Israel in the summer of 1997, I met and hung around with another girl, Lydia, for most of the first day. The next day, because Lydia was wearing different clothes, I didn’t recognize her. I introduced myself again as if I were meeting her for the first time; as far as I was concerned, it was the first time. I felt a little embarrassed when Lydia reminded me that we’d spent most of the previous day together, and I was at a loss to understand why her change of clothing was enough to throw me off. During the rest of the first week, I repeatedly asked another kid, Clark, what his name was. After I had asked him his name for the millionth time, he laughed and said, “Forget it. I keep telling you and you don’t remember.”
It wasn’t that I didn’t remember the names of these two people– I did recall meeting a girl named Lydia and a boy named Clark– but that I didn’t remember their faces.
As I would learn more than 20 years later, I have prosopagnosia, which is fairly common for people on the autism spectrum. Prosopagnosia is a neurological condition that makes it difficult to recognize faces. I have to be exposed to a new face dozens of times before I readily recognize it, let alone out of context. While autism was fairly unknown in 1997, developmental prosopagnosia was completely unknown. Back then, prosopagnosia was only diagnosed in the context of a brain injury, such as a severe concussion or a stroke. Since I was unable to explain why it took me so long to learn new faces, people often got the impression that I did not care about them or that I was not paying attention.
Some people with prosopagnosia, like me, take a very long time to learn new faces, but will eventually learn them with repeated exposure. Others have trouble recognizing friends, family, spouses, and even reflections of themselves. Like autism, prosopagnosia exists on a spectrum and those with the condition experience varying levels of difficulty.
Fortunately, after about a week of being around Lydia and Clark, I learned both of their faces and became friends with them. But there were ninety kids on the trip, and ultimately I only learned the faces of a small handful. The reality is that the faces of most of these other kids were almost entirely meaningless to me. They were like extras in a movie, or even components of moving scenery. Ultimately, they were faceless mannequins. And faceless mannequins are exactly what other people are to me when I first meet them.
It isn’t that I don’t care about people, or even that I don’t want to get to know them; I do. Like many others with prosopagnosia, I am glad when a new person has a distinguishing characteristic, such as an unusual hairstyle or a giant mole on their cheek, that has nothing to do with standard facial features. Such unique characteristics help me identify new people while waiting for a new face to sear itself into my brain. But if the new person with the unusual hairstyle shaves their head, I won’t recognize them. If the new person puts on makeup to cover the giant mole, I won’t recognize them.
Sometimes I even have to rely on other, non-visual cues to recognize new people. I often find a new person’s voice to be a very valuable cue. I am actually pretty good at distinguishing voices. When watching The Simpsons, for example, a show in which a small handful of actors play multiple roles, I am easily able to identify who is voicing which character. This is true even when one of the usual actors disguises their voice in a new way and lends their talent to a new character.
I received confirmation of my strength in voice recognition recently when I reconnected with Chuck, one of the counselors from the Israel trip, via videoconferencing. In 1997, he had long brown hair, but now he is bald. As we talked, I had to remind myself that although it had been 23 years since I’d last seen him, he was not a stranger. And yet, his face looked mostly unfamiliar to me. His voice was what I found to be most recognizable after all these years. It is clear to me that the passage of time blurred my memory of his face. With long hair no longer available as a cue, Chuck’s voice was what bridged the 23-year gap for me.
Before I knew the term “prosopagnosia”, my difficulty in learning new faces caused me great shame and embarrassment. This can even be true for someone who has a formal diagnosis if other people– peers, teachers, coworkers, etc.– do not understand. It is really stressful when people read intent into a struggle that is beyond your control.
Fortunately, everybody at Brain Power knows that I have prosopagnosia. Upon meeting new hires, I tell them about my condition and that they should not take it personally if I end up asking their name dozens of times, especially if I see them out of context. If I get two people mixed up, they correct me, we laugh about it, and we move on.
If someone repeatedly asks your name or forgets who you are, please don’t take offense. They just might have prosopagnosia. If they disclose that information, ask them if you can help in any way. I promise that they will appreciate it.