Sorry, who are you?

This post won’t be talking about autism specifically, but another less-known disorder that is often associated with it; face-blindness. To any friends or loved ones that I haven’t told about this; I know this might be a weird thing to read about, but at least I don’t remember how your face looked on bad days.

What is it?

The medical term for this disorder is prosopagnosia, and it is described as, “A neurological disorder characterised by difficulty or inability to recognise faces” by the NHS website (link below). I usually explain it to people by saying that I can’t visualise someone’s face when I think about them, and so when I meet them I find it very difficult to recognise them by their facial features. When I try to conjure up someone’s face that I have not seen in a while, it’s basically impossible.
This disorder can be developmental (something you are born with), or it can appear after brain damage, known as “acquired” prosopagnosia. Like ASD, this disorder is on a broad spectrum and has different ways of presenting. This is best explained by the National Institute of Neurological Disorders and Stroke (NIDS),

“…some people with prosopagnosia may only have difficulty recognising 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 recognise their own face.”

This can cause difficulties in many different ways. For example, someone with prosopagnosia may find it hard to follow a TV show as they cannot tell apart different characters. Difficulties recognising their surroundings can also cause people to struggle with navigation as they cannot remember landmarks.

Face-Blindness and Autism

The reason I am talking about this disorder is not just because I have it (sorry friends), it is because I didn’t know I had it until after I was diagnosed with autism. Even then, I didn’t know that it is often associated with autism until quite recently. The NIDS website (link below) mentions that, “Some degree of prosopagnosia is often present in children with autism, and may be the cause of their impaired social development.”
This means that the difficulties with social interactions that autistic people experience may also be impacted by this neurological disorder. This does not mean that face-blindness is always correlated with ASD. Someone can be autistic and not face-blind, and vice-versa. In fact, prosopagnosia is twice as common as autism in the UK with around 1 in 50 people having it. There is not a lot of research into the links between autism and prosopagnosia, but I hope that this will change soon.

My Experiences

As someone who is both autistic and face-blind, life has been very stressful for me. I knew that not being able to visualise or recognise faces was an unusual thing from a young age, but I assumed that I was lazy and beat myself up for not knowing what my loved ones’ faces looked like. I had so many moments where someone I knew approached me and I couldn’t recognise them throughout the entire conversation, which created so much guilt. These difficulties have caused me a lot of anxiety around meeting new people in person for the first time, or seeing people I have not seen in a while in a new environment. I have even considered the possibility that my face-blindness is my own fault because I find eye contact so difficult and I rarely look directly into someone’s face while I am talking to them.
Over the years I have figured out how to recognise people based on other things such as hair, voice/accent, context (for example, colleagues at work) and even clothes (some of my friends let me know what they are wearing before we meet to make things easier). 

My hope is that this post will reach people who have this disorder but have never heard of it before. Perhaps if you resonate with this post, you may realise that this is something out of your control, and stop being so hard on yourself. Even if you don’t, I hope that this inspires you to be a little more understanding.
Today (December 3rd) is International Day of People with Disabilities. The theme of 2020 is “Not all disabilities are visible”, and I could not think of a more appropriate day to write this post. I think that talking about ASD and prosopagnosia and raising awareness of “invisible” disabilities is more important than ever. I really believe that everyone should be aware of neurodiversity, and give neurodiverse people the respect and recognition that we deserve.  

NHS Website: https://www.nhs.uk/conditions/face-blindness/
NIDS Website: https://www.ninds.nih.gov/Disorders/All-Disorders/Prosopagnosia-Information-Page

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