Wednesday 3 April 2019

Prosopagnosia: Guess Who?

Before I hit you with the wordy bits I shall lure you in with an entertaining (or what could have been socially mortifying, had I not been so conditioned by a lifetime of social ineptitude as to tread with great caution and a good dose of pretending!) tale of one of those moments where the usually-ignorable non-functionality of my autistic brain hit me round the head like a wet salmon (I'm making an assumption here: it is not an experience I have actually shared).




Now with all my work shenanigans I have run into HR and OH (Occupational Health) a couple of times, in the nicest possible of ways. Work are incredibly supportive of me and as accommodating as they can be. I met once last year with the company's OH advisor, and have had a number of meetings (three or four) with their HR manager who is based on our premises one day a week.

My latest meeting with HR led to my second meeting with OH, less than two weeks later. Here comes the amusing part.

I trundled off to my OH meeting as planned at premises on the other side of town, and reported to the receptionist who directed me to wait to be collected. Now previously to this meeting I had been trying to remember the OH advisor and her appearance. This was without a whole lot of luck due to only having met her once. A remotely familiar face appeared at the door, reporting to an invisible person "It is Square Peggy!" She called me through and the invisible person became visible: a person I had never seen before. The familiar face offered hot drinks and I thought that perhaps this new lady was coming too. (By this point I had already nearly followed the familiar face into the kitchen before realising she was making the drinks not leading me to the meeting!) It was only when the unfamiliar face directed me to the room at the end of the corridor and the familiar face did not follow, that I managed to put together the facts: the familiar face was HR (who I had met with for a full hour just the previous week and pass in the corridor most weeks) and the one I had "never seen before" was OH. Very glad I had judiciously remained silent and just followed people around until I knew what was expected of me!

Prosopagnosia, also known as "face blindness", is the inability to recognise faces. Face blindness often affects people from birth and is usually a problem a person has for most or all of their life. It can have a severe impact on everyday life (see below). Many people with prosopagnosia aren't able to recognise family members, partners or friends. They may cope by using alternative strategies to recognise people, such as remembering the way they walk, or their hairstyle, voice or clothing. But these types of compensation strategies don't always work, particularly when a person with prosopagnosia meets someone out of context, at a place or time they're not used to seeing that person.
The impact of prosopagnosia
A person with prosopagnosia may avoid social interaction and develop social anxiety disorder (an overwhelming fear of social situations). They may also have difficulty forming relationships or experience problems with their career. Episodes of depression aren't uncommon. Some people with prosopagnosia are unable to recognise certain facial expressions, judge a person's age or gender, or follow a person's gaze. Others may not even recognise their own face in the mirror or in photos. Prosopagnosia can affect a person's ability to recognise objects, such as places or cars. Many people also have difficulty navigating. This can involve an inability to process angles or distance, or problems remembering places and landmarks. Following the plot of films or television programmes can be almost impossible for someone with prosopagnosia because characters aren't recognisable. Someone with prosopagnosia may worry that they appear rude or disinterested when they fail to recognise a person.
https://www.nhs.uk/conditions/face-blindness/ (NHS)

I've always known I'm not great at remembering who people are, but I only heard of prosopagnosia some time after my autism diagnosis. Even then, I didn't (and still don't, really) consider that I meet the criteria for claiming I have the condition, but it is certainly a term that helps me to understand and accept some of my social differences and difficulties.

If I had discovered the previous and following descriptions of prosopagnosia earlier on, perhaps I would have realised its relevance to my life experiences rather than assuming that because I recognise myself and people close to me, I am not affected by prosopagnosia.

Prosopagnosia is a neurological disorder characterized by the inability to recognize faces. Prosopagnosia is also known as face blindness or facial agnosia. The term prosopagnosia comes from the Greek words for “face” and “lack of knowledge.” Depending upon the degree of impairment, some people with prosopagnosia may only have difficulty recognizing a familiar face; others will be unable to discriminate between unknown faces, while still others may not even be able to distinguish a face as being different from an object. Some people with the disorder are unable to recognize their own face. Prosopagnosia is not related to memory dysfunction, memory loss, impaired vision, or learning disabilities. Prosopagnosia is thought to be the result of abnormalities, damage, or impairment in the right fusiform gyrus, a fold in the brain that appears to coordinate the neural systems that control facial perception and memory. Prosopagnosia can result from stroke, traumatic brain injury, or certain neurodegenerative diseases. In some cases it is a congenital disorder, present at birth in the absence of any brain damage. Congenital prosopagnosia appears to run in families, which makes it likely to be the result of a genetic mutation or deletion. Some degree of prosopagnosia is often present in children with autism and Asperger’s syndrome, and may be the cause of their impaired social development.
https://www.ninds.nih.gov/Disorders/All-Disorders/Prosopagnosia-Information-Page (National Institute of Neurological Disorders and Stroke, US) emphasis added.
Since finding out more about the compensations and adaptions made by people with prosopagnosia and the spectrum of its presentation, much light has been shed for me on experiences that I would previously have chalked up to some lack, failing or inadequacy (read here "stupidity") on my part.

How are they not the same person??
I think these two look the same. But Mr Peggy has just
informed me they are the same two as those two in the
tent! And laughed uproariously at my baffled response to
all of those facts.
The story I recounted above was a particularly striking occasion for me, but the confusion and potential for social error has been a recurring theme throughout my life. I have always been embarrassed by how long it takes me to learn people's names in a social circle or new job. When meeting several people at once I often end up with pairs whom I can't differentiate (I either think they're the same person or I know they are one of two but don't know which). I have worked in my current job for three years and there are colleagues whose names I am still not certain of. I drive Mr Peggy mad by constantly demanding to know which character is which, or why they are acting as they are (because I have got them mixed up) in TV or films.
 
No, no, and no. That is all.
I am confounded when people change their hair because I use that as an identifying feature. My natural inclination is to use clothing, but people are inconsiderate enough to change this regularly so if I will see them for more than one day I endeavour to find things that identify them other than clothing: hair, someone they remind me of, mannerisms/my over-all impression of their body including height, shape, movement patterns, sound patterns. I also distinguish by features of association rather than sensory recognition, so my attempts at identification employ a whole variety of techniques I have developed to mask my uselessness at recognising people: "Mary... is she the one from Bigtown, who knows Claire and used to be a pharmacist, with straight grey hair that wears old lady perfume and horrible cardigans with wobbly buttons?"

Context is a massive help too, as demonstrated by the OH story. In the context of my regular work premises (particularly on the correct corridor) I would recognise HR lady immediately, but somewhere else I was put right off the scent and couldn't work out who anybody was. It could have been very embarrassing. Sometimes I ignore or give a blanket response to people I meet out of context: work people outside of work look different and I may not realise who they are until they have left. I was once trying to add a Peggy from dancing as a Facebook friend and declared to her that I couldn't find her: none of the people with her name were her. Of course she was the very first person on the search results, but her hair was down and possibly a different colour. Oops!


I don't introduce people to each other, partly because I forget that's what you're meant to do, but also because I am not confident that I will get the right names. I have asked Mr Peggy countless times on the way home after church "was I supposed to know that person?" after standing next to him pretending to partake in conversation for half an hour...

Oh, and sometimes it works the opposite way too: because I'm so aware that I don't recognise people and might ignore them, I begin to over-recognise and think that random people are people I know! The problem really is that everybody looks too much alike. Definitely no tmy brain distinguishing them...

I've heard that prosopagnosia may be linked to autism spectrum disorder - is this true?
It is true that many people with autism spectrum disorder also experience face recognition difficulties. Problems with face-processing have also been reported in other developmental disorders such as Williams' syndrome and Turner's syndrome. There are various theories concerned with this pattern of presentation, and some researchers believe that the face recognition impairment can be attributed to a lack of social interest in faces, and others that perceptual-processing strategy or impaired visuo-spatial skills may be the critical factor. However, while some individuals with prosopagnosia report severe social consequences resulting from their face recognition difficulties, these are not necessarily an indicator of a concurrent neuro-developmental disorder. On the contrary, there have been reports of misdiagnosis of high-functioning autism when the underlying issue is prosopagnosia alone. Importantly, many people with developmental prosopagnosia do not fulfil the diagnostic criteria of autism spectrum disorder, confirming the independence of the two disorders.
https://prosopagnosiaresearch.org/index/information (Centre for Face Processing Disorders, Bournemounth University)
So, we know the two conditions often coincide, but they also present independently of each other. For me, I would say that any of the three types of theory mentioned here could play a part on my difficulty with recognising faces. Although I do not have a complete lack of social interest in faces, I have long observed that I do not tend to look much at faces as much as others do, and when I do it is often at the mouth to help me process speech, rather than the eyes or face as a whole. It would be interesting to find out whether my perceptual-processing strategies or visuo-spatial skills were related.


So there you go: an introduction to prosopagnosia and perhaps to the milder end of its spectrum where I suspect I may fall. Here's to understanding and accepting my differences and not being ashamed or afraid to admit them: it's actually much less embarrassing to say to people "I have a condition that means I don't recognise faces very well so I will probably forget who you are/I'm sorry if I've already met you" etc than to pretend you know and get in a pickle. I've done it once or twice and hope to get better at explaining myself to avoid the social misunderstandings that lead to me looking rude or like I don't want to know people. "Can you remind me of when/where we met?" "What were we talking about last time I saw you?" "I have a condition that means I find it hard to connect faces"

"Hold on a second! Sorry but I haven't a clue who you are!"

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