It was a bright, sunny day, just after yet another lockdown had lifted during the COVID era. I was cycling along the bustling terraces that lined the canals of Utrecht, soaking in the lively atmosphere that had returned to the city. As I passed through the crowds, my eyes caught sight of a man amidst the sea of faces, and a strange familiarity washed over me. I knew him—I was certain of it. But from where? The memory eluded me.
I searched my mind, sifting through a vague recollection: an image of me beneath him, his nose hairs visible, his beautiful eyes so close yet not quite meeting mine. The confusion unsettled me. I’m not particularly comfortable with intimacy, especially not with men. The men with whom I’ve been close are few, easily counted on one hand. So how could this be? Who was this enigmatic man?
I puzzled over it, the question gnawing at me, but I could find no answer. Eventually, I pushed the thought aside and continued with my day. It was only the next morning, while I was in the shower, that the memory came rushing back to me with sudden clarity: the kind man was my dentist.
This anecdote makes for a light-hearted story among friends, the kind of tale that evokes a laugh over a glass of wine. However, in daily life, it’s a far more inconvenient reality. I tend to remember people by their identity markers—those distinct characteristics that set them apart, such as a unique hairstyle, a particular scent, or the way they carry themselves. Often, I rely on initials to help anchor these markers in my memory. But faces? Faces rarely stick.
This difficulty is known as prosopagnosia, or face blindness—a neurological condition that affects one’s ability to recognise faces. As the renowned neurologist Oliver Sacks once shared, “I had quite a lot of difficulty recognising [people], with people I saw a great deal of… I initially had to use particular criteria… then I came to recognise their faces but I didn’t recognise too many other people.” It seems like to us, a face is not a face. It is a collection of separate pieces—nose, eyes, mouth, chin—without any sense of their belonging together.
In my case, prosopagnosia means that even familiar faces, those I encounter regularly, can become strangers in a crowd. It’s as if the ability to recognise a person’s face—a skill that most people take for granted—has been swapped out for a reliance on other, less consistent cues. This can lead to awkward moments, like the one with my dentist, where the context was just off enough to render him unrecognisable until my memory could catch up. Or the years I spent casually mentioning “that actor who looks so much like my brother” only to discover I had meant three different hunks—Matt Damon, Leonardo DiCaprio, and Ben Affleck—who, according to my friends, don’t really resemble each other but each, in their own way, does have something of my brother.
For much of my life, I didn’t realise that prosopagnosia was a neurological condition and more common among individuals with autism, a group to which I belong. Instead, I thought I should just try harder. Moreover, I carried a deep sense of shame, as it was often held against me as a child and teenager that I couldn’t recognise people, even those I had met multiple times. This inability was seen as a personal failing, a lack of attention or care, and I internalised that criticism.
It wasn’t until much later, when I began searching online, that I stumbled upon autism communities where people shared remarkably similar lived experiences. Finding others who faced the same challenges was profoundly comforting; it gave me the ability to view myself with more compassion and understanding. I realised that what I had been grappling with was not a personal flaw, but rather a common trait within the autistic community.
It’s difficult to recognise where you diverge from the norm when your own perception is your only reference. Discovering that others share your experiences can be both enlightening and reassuring. “Lived experience” in the context of autism refers to the personal, day-to-day realities of navigating the world as an autistic individual. It encompasses the unique challenges, insights, and coping strategies that come from living with a neurodivergent brain in a largely neurotypical world. This firsthand knowledge is invaluable for the theme of “Live & Learn,” as it allows both those within and outside the autistic community to gain a deeper understanding of the autistic experience—beyond what can be gleaned from textbooks or clinical observations. By sharing these experiences, we foster empathy, break down misconceptions, and encourage others to approach the world with kindness and open-mindedness.
I am deeply grateful that people are willing to share their experiences online, creating spaces where we can all—regardless of neurotype—learn from one another. These shared stories are bridges to understanding, offering insights that we might never have considered otherwise. Through this collective exchange of lived experiences, we foster a world with more empathy and compassion. As we come to understand each other better, we move closer to a society where differences are not just tolerated but embraced. With greater understanding comes greater compassion, and with that, the potential to create a better world for everyone.
Martine Mussies is an autistic academic and artistic researcher based in Utrecht, the Netherlands. A PhD candidate at Maastricht University, she recently published her first monograph, Inside the Autside – a Misfit Manifesto. Martine is also a professional musician, visual artist, avid language learner, and budo practitioner. More at www.martinemussies.nl.
