In some ways, the diagnosis makes no difference at all. There is no cure, no treatment, no mitigation or suppression of the symptoms. The strategies I had developed independently are probably the best there are. I am still on my own in dealing with it, but no longer alone in my head! It wasn’t “Just Me” anymore! At last, I can talk about my problem to my friends, family, my work mates without shame, without self-consciousness.
However, before I tell you what living with Prosopagnosia is like, how it affects me in my every day life, perhaps I had better tell you what it is!
What is Prosopagnosia?
Let me give an example. I have, amongst my seven children, two daughters who have grown up, got married and started families of their own. Earlier this year, we travelled up to the second daughter’s house to attend her son’s (my grandson’s) birthday party. Several friends were turning up with presents and, in some cases, with children of their own. The house was filling up. The doorbell rang again and, being nearest, I went to answer it. A lady I didn’t know was standing there with a present, so I told her the party was in the back room and she should go on through. She gave me a funny look (I get a bit sensitive to those – you’ll see why later) and passed on through. Just as I was shutting the door a man walked up the garden path. This person I can usually recognise – he has distinctive hair, often wears the same style of clothes and walks in a recognisable way. Well, I recognised him as my son-in-law, husband to the first daughter.
I’ll write more about how Prosopagnosia affects my life in a little while, but first…
What causes Prosopagnosia?
There are two main recognised causes. The most obvious cause is a direct brain injury, usually after childhood, when the recognition centres in the brain have already developed. This type of prosopagnosia is usually called “Acquired Prosopagnosia”. The other cause, giving rise to “Developmental Prosopagnosia” starts much earlier, before the brain has had a chance to learn to recognise faces (a process that usually peaks during puberty). This can be due to “pre-experiantial brain damage” (such as pre-natal injury), or can possibly be inherited – there is some evidence that prosopagnosia runs in families. In addition, Developmental Prosopagnosia is often linked with Autistic Spectrum Disorders, such as Aspergers Syndrome and the like.
Whatever the initial prime cause, the condition is brought on by an interruption to the brain’s normal processing of data that allows facial recognition. Some research indicates that there are several steps involved and the interruption could occur at any level, with similar consequences. For example, some prosopagnosics, when wired up with sensors that detect emotional response (skin resistively, for example), still exhibit an emotional response when shown a face of someone they know but don’t recognise. Others don’t. Some have problems recognising the difference between other objects, such as cars or aeroplanes, while others don’t. Such different experiences indicates that malfunctions can occur in different parts of the recognition process but still bring about a similar final effect.
How has it affected me?
I appear to have Developmental Prosopagnosia. I have no record or recollection of a brain injury at any time in my life (although I fell off a moving bus at around the age of seven, it didn’t appear to do any serious harm. I was kept in hospital overnight for observation, but never exhibited any symptoms of injury or concussion). I also have no recollection of ever being able to easily recognise people. Is mine inherited? Probably not. My parents and most of my brothers and sisters score around average on the online tests. One sister scores low, but way more than my score – a borderline case. There doesn’t seem to be any real reason for it in my case, but the effect is real enough! [2011: Since originally writing this article I have discovered that my eternal grandmother may have had Prosopagnosia. A comment was once made about her, that “she was really rude, she would be nice as pie one day, and cut you dead the next” – typical prosopagnosic behaviour from someone who doesn’t always recognise a close friend!]
Right from my earliest reliable memories (in my early teens, I guess), I can remember having difficulty recognising people. This tended to make me shy and withdrawn. I became bookish, unpopular at school and bullied. I took to truanting frequently, eventually falling far behind in my work and leaving school before finishing my education. The few friends I had were often outcasts for other reasons – they had behavioural problems, or were poor achievers. This continued into my later teens and into adult life. I was socially inept, found it difficult to strike up friendships or to maintain them. My parents referred me to a psychiatrist in my mid-teens to try and understand why I was liable to ‘behave erratically’. Their conclusion, after several visits and a whole battery of tests was that I was exceptionally intelligent (my IQ was measured at 160+) and not sufficiently stimulated by my school work.
This followed through into my early work life, where I never really developed any close friendships. Fortunately, I was put onto a research project where I was working very much on my own, which suited me well! Fairly soon after that, I met the girl who was to become my wife, and things turned around! Margaret introduced me to the church she went to, and I started to develop some social skills at last. After a couple of years we got married, and I have never looked back. The skills I learned in those early years continued to develop and I became much less socially inept and clumsy. I am still quiet and shy even now Shy, that is, in small groups. I have no problem at all talking to large crowds where individual recognition is not important. The homogenous mass of people in front of me is, in some ways, more comfortable than the need to relate to individuals in a smaller group. All this is part of Prosopagnosia. Small-talk takes a lot of effort to maintain recognition of the people in a small group – effort that gets in the way of relaxing and interacting easily.
With Margaret, I finally had someone I could open up to. I didn’t need to hide my problems in recognising people (even though I didn’t know then that it was a recognised syndrome, I thought it was “just the way I was”). Margaret seems to have better than normal skills at recognising people. She can spot friends from school she hasn’t met for 30 years or more. She can recognise a small child she hasn’t seen before from the family likeness. In the same online tests I took, where I only managed to get 2%, she got 97%! This helped me to realise that I had a problem with recognising people. I was also able to be honest about it – I didn’t have to hide things, or pretend (to her) that I knew who those people were we just met. I was accepted just the way I was.
So, the increased social interaction helped me develop my coping strategies (more about those later), and that in turn helped me relax in company and develop my own social skills. Most people I meet on an occasional basis don’t know about my recognition difficulties. I can now function on a pretty normal basis. I can hold down a good job and have learned to live within my limitations.
How do I live a normal life?
This is all about the strategies I have learned to use to cope with meeting people (a big part of my job nowadays!) and interacting with colleagues, business contacts and the people we need to deal with on a day to day basis.
The first thing is context. I find it a lot easier to recognise work colleagues when I meet them at work. Church friends I can usually recognise when I meet them at church. I know where I expect to meet family members. If I meet anyone out of context it is much more likely that I will not recognise the closest of associates. The incident with my daughters I related above is a prime example – I wasn’t expecting to meet daughter number one at the house of daughter number two, so I didn’t recognise her.
Next this is the peripherals. I can’t recognise faces, but other things can give big clues to identity. Voices aren’t the biggest give-away, surprisingly. Hair styles, glasses, clothes, gait etc. All these give big clues. Cars, other possessions and the people they are with are another source of hints. Piece these clues together and I can narrow down the possibilities sufficiently to be able to guess the identity of the person I am talking to, but not usually immediately – it often takes several seconds, or even minutes, for me to assemble enough clues to be sure of an identity.
If all the above doesn’t help, you learn to fish for verbal clues. I tend to greet everyone I meet as if I knew them, whether I recognise them or not. I also call people ‘love’, ‘dear’, ‘mate’ or something similar. Then, I listen closely to the response to gather verbal clues – it’s usually quickly pretty obvious when it’s someone I don’t know. Sometimes it takes a while for a sufficiently obvious clue to emerge if it is someone I do know. I can often carry out a conversation for several minutes with someone who seems to know me when I don’t have a clue who they are or where they know me from!
The worst situation at work now is that I find it incredibly difficult to know who people are that I don’t interact with on a daily basis. My work is mostly office-based. If I need to go out into the factory to see someone, even though I know the name, I don’t know who they are! When I manage to identify them by one means or another, then I can associate that person with that particular task while I am with them. If I have to go back the next day, I have to go through the whole process again.
Is there anything I can do about it? the simple answer is ‘No’. There is no treatment, no cure, no counselling that can help. There are strategies that can help, but I seem to have discovered all of those by myself.
Some embarrassing moments..
I already related how I failed to recognise my own daughter when I met her out of context. That is only one occasion. Once I failed to recognise my own mother when I met her unexpectedly – I even talked to her for a few minutes before realising who she was!
When my younger children come out of school in their school uniforms I can’ t recognise them until they show some recognition of me. At a school play or similar event when they are ‘disguised’ I have no chance of spotting them. I’ve missed many tender memories in this way.
I failed to realise my wife had bought new glasses and had a new hair style – for several days! Fortunately that didn’t cause any trouble, she knows that if she went away for a week I would pass her in the street without recognising her!
I met a close friend who was a prison officer when he was in uniform one day and started a conversation. I turned away for a moment, then turned back to carry on the conversation – only trouble was, I never realised that a second prison officer had taken the place of my friend! Uniforms are a real source of trouble, as they remove a lot of the visual clues I often rely on.
We occasionally meet an old school friend at church events. I never, ever recognise him, although he always recognises me! To be brutally honest, I can’t remember him from school either, although his name is familiar.
My ten year old son was in a Drama School production this last weekend. All the students were wearing their uniform of a black T-Shirt (with Gold Logo) and black trousers. I was able to recognise him as he lined up waiting to come on-stage, but when they started their dance routine, I found it nearly impossible to keep up with him and know where he was! During the pauses, I could track him down due to some mannerism, the way he stood or looked around or touched his face etc., but as soon as he started to move around, I couldn’t process these clues fast enough and lost him again!
Where can you learn more?
Here are some links to follow where you can learn more:
He Can’t Recognise His Wife… – An article on me in the Daily Mail newspaper
“I Don’t Recognise my Own Face” – An article on my experience published by the Guardian Newspaper 2008-11-22
The Prosopagnosia Research Centre – A joint research project between Harvard University and the University College of London. They have details of the condition, research they are doing and online tests.
Some recognition tests from UCL
Do I Know You? – an article in Time magazine.
Wikipedia – The online encyclopedia
Cecilia Burman’s Prosopagnosia Pages – experiences of another prosopagnosic. It has a great description of how the condition appears by using an allegory of recognising stones
Faceblind – a Yahoo Group for prospagnosics
Identity Crisis – a Times Online Article Dec 17th 2006
Have you any comments?
I would love to hear from you if you have any comments about this article – the way it is written, any corrections or additions you would like to suggest. Especially, if anything here strikes a chord with you, please leave a comment.