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Living with prosopagnosia.

Outsiders Looking In: A Family's Journey of Prosopagnosia

A mother shares her family's discovery of her child's prosopagnosia.

Having prosopagnosia colors all aspects of the lives of people with prosopagnosia. However, having prosopagnosia does not just affect us prosopagnosics. It also affects the lives of the families we are born into and the friendships we choose to make and keep. Children with prosopagnosia can be particularly susceptible to bullying. They can also potentially become the victims of criminal activity with little recourse since they will be unable to recognize their perpetrators. Parents, caregivers, and other authority figures in the child’s life should be made aware of these potential dangers to a prosopagnosic child.

Whitney Wallace is the mother of a boy with prosopagnosia. In order to protect the personal safety of her child, Mrs. Wallace has requested that I change the name of her child. All other words, thoughts, and ideas are hers.

A collection of Lego characters created by Mark
I recently spent my first Mother’s Day as the mother of a child with special needs. No, we didn’t have a baby. No, we didn’t adopt a child. I guess I should say that my Mother’s Day was gifted with a child that is officially diagnosed with special needs. Our 10-year-old son, Mark, was the same this Mother’s Day as he was on Mother’s Day last year. What has changed is that we finally have some answers. After over eight years of searching, we finally know what’s going on.

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Mark was recently diagnosed with prosopagnosia. My husband and I had never heard of prosopagnosia and knew nothing about it. What we did know was that something was different in how Mark interacted with the world around him and that he often experienced intense anxiety in certain situations. We also knew that none of the other diagnoses we had “tried on” over the years really fit.

Beginning when Mark was very young, we noticed that he didn’t seek out interaction with us. He didn’t resist interaction if we initiated it, but he almost seemed surprised when we would pick him up and talk to him, or get down on the floor and play with him. As he got older, this changed; he did seek us out, but then he didn’t like us to be out of sight. For example, even though he went to the same daycare from four months old to almost four years old, he cried every morning when we would drop him off. Every morning. This went way past normal “separation anxiety”. As time passed, we started to see even more anxiety emerge, especially in certain situations. The bigger or louder the group was that Mark was in, the more anxious he became. On the other hand, he did great with other kids one-on-one, or in a very small group and he did things like sing a solo and play a lead role in a play with no anxiety whatsoever.

Mark’s experiences at school were also perplexing. His grades were great and he enjoyed learning. His teachers all talked about how polite and well behaved he was. He got along with other kids, but seemed to have a hard time really connecting to them. Outside of sharing about a couple of specific children, when we asked him about his day, he wouldn’t share anything specific about anyone else. Around second grade, Mark started to become more and more anxious about school. From what we could tell, there wasn’t anything obviously wrong. He was not being bullied. He didn’t seem to feel overly pressured to do well in school. He liked his teachers. There were no obvious reasons why he should be so anxious.

We pursued some testing with a private psychologist to try to find the underlying cause of his anxiety. The testing showed that Mark seemed to have problems processing certain types of visual information. The psychologist said that she felt that there was something more going on and recommended that we have Mark evaluated by a neuropsychologist. During the time we were pursuing that evaluation, Mark’s anxiety grew to the point that it was taking us hours to get him to school in the morning and he was in full fight-or-flight mode each day. All of us, including the counselor he saw weekly, were baffled as to what was causing such high levels of anxiety in him. Despite everything we tried, nothing seemed to be helping and Mark’s anxiety only seemed to be getting worse.

My husband and I were dumbfounded when the neuropsychologist’s evaluation showed prosopagnosia as the primary concern. The fact that Mark might not be able to recognize people never crossed our minds. The pediatric neuropsychologist who performed the evaluation has been in practice for 30 years and he shared with us that Mark is the first child he’s ever diagnosed with prosopagnosia.

The more my husband and I read and learned, the more light bulbs went on. Prosopagnosia explained so many things about Mark and the way he moved through the world. The most amazing thing was when we shared with Mark about his diagnosis. He obviously knew he was being evaluated and that we were all trying to get to the root of his anxiety. We shared with him a little about prosopagnosia and then showed him a few minutes of a 60 Minutes piece from March 2012 about it. He kept saying, “That’s exactly what happens to me!” At one point, he said to me, “Mom, I now know why I feel so anxious sometimes and it’s okay! I’m not going crazy!”

Since Mark’s diagnosis, we have learned so much from him about how he experiences his face recognition difficulties. He has shared with us that he mostly uses voice to recognize people, and when he’s in a room where there are many people talking or lots of background noise, it makes his recognition difficulties even worse. Interestingly, this increased awareness of sound seems to have also translated into an ability to learn music by ear.

Mark usually carries a book around with him and, while he does love to read, he has shared with us that he also uses it to avoid or direct social interaction. He told us that if he is reading, people are less likely to stop and talk to him or, if they do, they ask about the book and it gives him something to talk about with them even if he doesn’t recognize them.

I will fully admit that it took a while for me to wrap my brain around what it’s like for Mark to live with prosopagnosia, and I have sometimes even wondered if a mistake could have been made and that he doesn’t really have it. Then something happens and it shows me that, yes, he does have it and it can affect him greatly. He walks right past his third grade teacher at the grocery store and has no clue who she is until she speaks to him. He later tells me, “Mom, she was a complete stranger to me until she spoke.” He sees a picture of me without my glasses on and only recognizes me by recognizing the background in the picture. We send him off to an amusement park with a friend that he could not recognize in a photo and need to ask that friend to wear something distinctive so Mark can find her if they get separated. While out for a walk, we see two friends who look very similar, and Mark gets terribly worried that he called them by the wrong names and feels great embarrassment at even the thought of doing that.

These little day-to-day occurrences are just a taste of much deeper ways that prosopagnosia affects Mark’s relationships. When he closes his eyes, or when we aren’t with him, he can’t picture my face or his dad’s. When we’re out in public, he constantly looks for us because he doesn’t trust that he’ll know when we’re around or if we’ve left. He has a wonderful time with other kids, but cannot readily connect a memory of an interaction with a person, so it’s hard for him to build a “friendship history” with someone. He cannot easily identify a child who was mean to him in order to avoid interacting with that child in the future. He often has a hard time reading more subtle facial expressions so he is caught off guard by people’s reactions. His dad and I have to be very careful about the words we use and the tone of our voices because that’s essentially the only way Mark can tell how we’re feeling.

As his parents, Mark’s individual challenges have become our parenting challenges. Along our collective journeys, we had not been satisfied with the diagnoses that so many of the professionals we had sought out had given us. To us, it simply felt like they were “trying on” a new diagnosis each time, but none of them seemed to fit Mark or our observations of Mark very well. Now that we finally have some answers that seem to fit Mark more accurately, I have spent some time looking back on the journey that we’ve been on up to this point. We have seen neurologists, geneticists, early intervention specialists, occupational therapists, developmental vision specialists, educational psychologists, and counselors. In addition to these, teachers, school administrators, friends, and family have also offered their observations and opinions about Mark’s struggles and behaviors. Possible diagnoses that have been offered up or explored have included hearing difficulties, ADHD, PDD-NOS, Sensory Processing Disorder, Nonverbal Learning Disorder, Generalized Anxiety Disorder, Social Anxiety, School Phobia, panic attacks, and “over excitabilities” due to the fact that Mark is also highly gifted.

Some even offered up the opinions that he simply had a behavior problem, was being defiant, was immature, wasn’t trying hard enough, or was acting the way he was because he was an only child. One acquaintance went so far as to suggest to me that Mark’s struggles would all clear up if we would just have another baby. A medical professional we saw only a couple of times decided that I had OCD five minutes into our appointment when I brought out the detailed notes I had kept on all the testing and observations we had made about Mark. She felt that if I wasn’t so “obsessive” and just let it go, that Mark would be just fine.

Exploring some of these potential diagnoses was actually helpful because we learned a little more about Mark each time we consulted with someone new. I feel they also led us to know, eventually, which type of professional to seek out to truly get to the bottom of things. On the other hand, some observations and opinions offered were not helpful at all and were sometimes hurtful and very discouraging, not only to Mark’s dad and I, but to Mark himself.

Looking back over the years, though, I mostly feel deep gratitude toward those who took our concerns seriously, whether they encouraged us to not accept just any diagnosis offered, or they stood by us and didn’t run in the opposite direction when Mark’s anxiety was at its worst and most debilitating: Mark’s first pediatrician, some specific teachers along the way, a principal who did not just see Mark’s anxiety as a behavior problem to be managed, a coworker and friend who brought us dinner in the midst of a crisis period, family with personal experiences with intense anxiety that offered us hope and solid advice, and, probably most of all, the counselor that Mark still sees to this day. She walked with us through some of the most trying and terrifying times we have experienced as a family, and she was willing to listen to her heart when nothing her training and experience told her to do was helping our child. There were others too, and these people helped us keep going and prevented us from accepting some diagnosis, any diagnosis, and the potential treatment that went along with it, just to have “an answer”, even if it wasn’t the right one.

There is no doubt that Mark’s prosopagnosia plays a part in our everyday lives and that it’s never far from our minds, but we are also interacting with, loving, and parenting him in much the same ways that we always have. Yes, we occasionally talk about prosopagnosia. Sometimes we even find humor in the situation. Just the other day we were talking about a person who lived in our former hometown. Mark didn’t remember the person and my husband said “You would know them if you saw them.” There was a momentary pause and then we all started laughing, most of all Mark. He responded, “Uh no, Dad, I kind of doubt I would!” On the other hand, prosopagnosia is far from the only or main topic of conversation in our home.

During our post-evaluation conversation with him, the neuropsychologist referred to Mark’s disability. This didn’t upset me, but it was weird because I had not thought of Mark in those terms. True, we have no other children to compare him to and we realized a long time ago that we were going to have to throw out the parenting “how to” book with him, but I’ve always seen Mark as a kid with just as many, if not more, strengths as he has struggles. He is funny, smart, and giving. He devours books with incredible speed and has an unbelievable imagination. He unashamedly loves and encourages other people and inspiringly sees the value in all creatures, great and small. Knowing that he has prosopagnosia doesn’t change any of those things. It just adds to his uniqueness and allows us to know how to support him better as he learns how to travel his individual path in this world.

 

This blog entry is ©2013 by Whitney Wallace and is used with her permission. Special thanks to Mrs. Wallace for allowing me to utilize her words and her family's experiences.

 

About the author: Whitney Wallace lives in western North Carolina with her husband and son. She has a Bachelor's degree in Biology and Psychology and a Master's degree in Counselor Education. She has worked in a variety of educational and counseling settings with both adults and children. Her interests include online learning development, adult education, multi-modality learning, gifted and twice exceptional education, and science.

If people want to connect with her, they can email her at wsquared77@gmail.com and/or follow her on Twitter: @wsquared77

 

About Mark: It is unknown what caused Mark's prosopagnosia, but the neuropsychologist identified that the pattern of damage in Mark's brain follows the pattern one would expect with a child who had a "coup-countercoup"-type head injury. It is unknown if Mark was injured in a way consistent with the neuropsychologist’s observations; therefore, the question of whether Mark has developmental or acquired prosopagnosia is unknown. After many years in a public school setting, Mark is currently homeschooled by his parents. Mark participates in several homeschool group classes and other groups so Mark still deals with the social aspects of prosopagnosia in those areas.

 

Introduction written by Glenn Alperin

 

Teaser image © and courtesy of Mark, with photograph taken by Whitney Wallace on Thursday, May 16, 2013.

 

I would like to express my sincere thanks and appreciation to Mrs. Wallace for her contribution to my blog. I hope that her experiences with Mark, many of which mirror my own and that of my family, are both informative and helpful.

If this blog entry interests you, and you would like to be notified of future blog entries I publish as I publish them, you may join the announcement-only Glenn Alperin Blog Yahoo group.

Glenn Alperin is a writer who has prosopagnosia.

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