Dear Annie: Educating Readers on Prosopagnosia
Dear Annie: I read your column every day and am a faithful fan. Your column reaches a multitude of readers and is a valuable way to enlighten and educate on topics either not talked about or not well known. I wanted to write to you about a condition that my son has, in hopes of educating people about it, as there are many others who have the same condition and are suffering in silence.
My son has prosopagnosia, which is a neurological condition characterized by the inability to recognize the faces of familiar people. Some experts have claimed that 2% of the population has the condition. There are two forms, congenital, which means from birth, or acquired, which means through stroke, traumatic brain injury or certain neurodegenerative diseases. It also tends to run in families. Some degree of prosopagnosia is often present in children with autism and Asperger syndrome, and may be the cause of their impaired social development.
My son has had the condition from birth. We always knew that he had trouble identifying people, as he would frequently mix people up when he was younger, such as his own dad and uncle, who, while having similar height and build, looked nothing alike. We always thought it was a quirk — out of sight, out of mind. However, as he got older and started attending school full-time, we noticed a change in personality; his self-esteem plummeted and he frequently said he felt dumb and out of place.
This was very scary to witness as a parent. Luckily, he had some amazing teachers along the way who identified and recommended that something else was going on and encouraged us to have a neuropsychological evaluation done. He scored in the first percentile for visual memory. At the same time, his dad read about prosopagnosia. It was like a lightbulb went off in our heads when we read about the symptoms, and completed a checklist. Our psychologist was receptive to reviewing and learning about this condition and reached out to colleagues.
After further review, and appointments with a neuro-opthamologist and neurologist, we were able to get a diagnosis. Now there is no foolproof test to diagnose the condition, but our son had enough of the markers for the doctors to make an educated diagnosis. We can’t tell you how much having an answer and learning about the condition really helped our son. While it still took some time and therapy, his mood improved, his self-esteem came back, and he was happy to explain his condition to his friends and family to help them understand.
This is something he will struggle with all his life. There are times when he loses his family in a large crowd or can’t find his friends on a playground. There are times when he totally ignores a friend because he runs into him unexpectedly and can’t identify him, which results in hurt feelings on both sides. Luckily, he has support from his family, friends and community. Many times we have run into people unexpectedly who know about our son’s condition, and they smile and introduce themselves to him and give a brief sentence or two on where he may know them from. This goes a long way in helping him to remember.
Thanks for always being there. — A Loving Mom in Massachusetts
Dear Loving Mom: Thank you for educating all of us on what must be a difficult condition, one that your son is dealing with admirably, thanks to the courageous and intelligent efforts of you, your husband, the doctors and those special teachers who really cared about your son. Your story is very inspiring.