Hello, a personal story on the blog today!
I didn’t ever imagine hearing this from my husband. It’s another aspect of difference that we navigate as a couple each day in our neurodiverse relationship.
As we began to unpack the discovery of autism and neurodiversity in our relationship, other labels began to appear.
In the medical/psychological realm they are often called co-morbid or co-occuring conditions. In the ‘Love and Belonging Realm’ that I choose to inhabit, I prefer to call them companions. In our home this includes interpretive dyslexia, alexithymia, depression, anxiety, attention and pace differences (often labelled ADHD) and my chronic and recently unstable health condition.
These companions don’t always make total sense to me or us but we continue to be curious, learn from what’s positive, healthy and helpful and work out how we can best be ourselves and together in light of what we find out as we travel.
Prosopagnosia is another one of those.
Pete and I see faces differently.
Pete lived the first 56 years of his life knowing he somehow didn’t fit in and also believing that his experience of the world was exactly the same as everyone else. We all do until there is some new evidence or new perspective on that which explains it or finally makes some sense. By then though a lot of trauma and damage may have already been done. In Loving Difference we’re growing in our understanding of this all the time, as members and as Coaches, about ourselves and about our loved ones.
Prosopagnosia is an aspect of Pete’s experience that I have virtually no means to empathise with. I can’t imagine it and I have no experience to relate it to. I use my experience of confusion or not understanding something and how that can feel. That’s my best point of relating I can find. This photo helps me to see the world as Pete may see it in some form.
Could you or how would you distinguish all these people, if you knew them, without their faces? Reflect for a moment on how much you read or recognise or understand or remember of someone from their face. Without that… how would you or do you create connection?
Prosopagnosia from Greek words prosopagnosia (face) and agnosia (not knowing).
Prosopagnosia is not specific to autism or neurodivergence. Neurotypical people can experience it too. However, it appears to be quite common in the autistic community.
Prosopagnosia is also known as face blindness. It means you cannot recognise people’s faces and struggle to distinguish faces. Those who experience prosopagnosia may also find it difficult to recognise their own face in the mirror or in photos. People cope by using alternative strategies to recognise people such as remembering voices, clothing or other physical features. These types of strategies don’t always work, e.g. when a person meets someone in an unfamiliar situation.
The experience of prosopagnosia can lead to isolation, social anxiety, depression, career challenges and difficulty judging a person’s age or gender. It can lead to difficulty navigating or remembering places or landmarks. It contributes to emotion blindness too since the majority of people use facial expressions, amongst other things, to express their own emotions and as a cue for interpreting someone else’s. It can also extend to understanding plots of films or TV programmes because of struggling to recognise or follow characters. Other neurodivergent traits can exacerbate as well as mitigate the impact of prosopagnosia, e.g. sensory differences and alexithymia.
Similar to masking autistic traits, people with prosopagnosia use different cues and clues to recognise people. They create and rely on a variety of methods and strategies to hide or compensate for not being able to recognise faces. They may have no idea they’ve been doing this their whole life. I realise now how exhausting this has been and continues to be for Pete on a daily basis. It’s easy to forget this when these strategies are invisible to anyone else.
You can read a little more at this link. I’ve heard Olga Bogdashina speak at a conference and hold her in high esteem for her contributions to understanding the autistic/neurodivergent experience from a scientific perspective.
In writing this article, I showed Pete these two images, to see if this gives me an idea of how he sees faces. He said ‘No, it’s not really like that, it’s more like I look at a person as an object. The first thing I notice is their clothes and what ‘they’ feel like.’ Ok… so I’m not any further forward in my ability to empathise! Pete’s experience is very touch and visually sense driven though not the same kind of touch or visual aspects that I use or notice. So again, I can hear what Pete’s saying and yet the same words or kinds of words we’re using, as I’d never use exactly those words to describe looking at a person, don’t mean the same thing. You can see how confusing and exhausting all this can become! For that we need compassion, patience, curiosity, interest and a ton of energetic capacity hence why we have a massive focus in Loving Difference on energy and creating capacity in all kinds of ways.
How do you or your loved ones recognise people?
I thought I’d share a few examples of how this impacts Pete, our relationship and family life. Perhaps you recognise traits or clues for how you or your loved experience faces that you’ve not considered before.
👔 At work Pete struggles to recognise colleagues. With men he uses hair, voices and ties mainly I think which has got trickier since they started dressing down more since covid. With women it’s more difficult because they change their clothes and hairstyle more often or wear a wider range of clothes. Again, voices and hair but also shoes and jewellery are key recognition cues for him. People may wear glasses or contact lenses or both – that’s troublesome for Pete.
👫 Pete asks me regularly whether someone is a man or a woman – in real life or on TV/films. He struggles with this in daily life and at work, especially when meeting new people. I used to think this was completely bizarre and even now, when it’s very obvious to me, it isn’t necessarily to Pete. As distinctions between men and women, e.g. clothing, hairstyles, make-up, etc. have become less obvious between men and women over the last 10 years or so, he has found it increasingly difficult. We don’t go shopping often now, but when we have in the last few years, Pete has asked for clarification of which department/part of the shop he needs to be in because he can’t tell the difference between which section is the men’s or women’s section. Imagine how safe you need to feel with someone to ask these kinds of things, fearing what judgements someone might make about you.
👩🏻 Pete would prefer me to be more consistent with what I wear. That has caused endless issues for us and it’s something I continue to be working through. It’s some choice to make – wear what I want but Pete might not recognise or speak to me… wear what Pete needs so he can recognise and connect with me. There are additional factors influencing this but prosopagnosia plays a part. In the past this felt like control. I know differently now and have a different mindset but it can still create relationship issues that are tough to work through, even with the most loving intentions. There is a third way that’s works well for us but it doesn’t always suit me. Going away gives me even more freedom to look how I want to, changing that and being as inconsistent as I like.
👩❤️👨 When I’ve been away for more than one night, Pete struggles to recognise me when I return and it takes 2-3 days before he’s feeling comfortable with me again. He loses connection/familiarity with me very easily and he finds it difficult to reconnect. To minimise the impact of this we try to video call each day and we also have a ‘re-entry ritual’ to give Pete time and space to adjust to me being back and me the re-connection I value too. I have things planned for this re-entry time so that my wellbeing isn’t impacted. In the past I waited a day to talk in more than pleasantries as, for Pete, it’s a bit like having a stranger in the house even though I’m his wife and I live there.
👓 When Pete changes his glasses, he doesn’t recognise himself in the mirror for a while. He takes time to integrate this new information because it’s different than before and the recognition cues have changed. I remember him saying ‘I don’t feel like I’m looking at myself’ and it took a few months for him to be comfortable again.
🤷🏼 Pete finds it difficult when we meet up with friends we’ve not seen for a while or a long time. He knows who we’re seeing but for Pete, he says it’s like seeing them for the first time. This could be close friends, my Dad, even his son or daughter who don’t live with us now – they aren’t familiar to him anymore. He keeps in touch daily with his daughter on FaceTime which I think may be helping though I’m not sure really. It means that these social engagements, even with immediate and close family, are high anxiety for Pete. You’d never know that looking at him or being in the situation with him. His masking is so good (not necessarily good for him though). I anticipate this is going to be challenging and create a lot of anxiety for Pete as we begin to see people again… we’re going to take that very slowly as Pete has realised this last year that he’s much happier not seeing people at all really.
As with so many other situations, we have 15 years of evidence of this all being horrible, when we had no understanding of what was contributing to anxiety, disconnection, difficulties. I felt confused, rejected, unloved in all sorts of situations. Prosopagnosia is one aspect of the explanations. It combines with everything else and can make a lot of life complicated and energy draining, more so for Pete than me, but for everyone in some way. Over the last five or so years we’ve created more healthy evidence and both feel safer and more trusting in the situations that previously caused a lot of emotional pain and exhaustion. We’re continuing to be compassionate, curious and explore how this impacts us individually and collectively. It’s a part of the journey we’re travelling.
Trust is my most valued companion which has taken several years to cultivate – a greater trust in myself and that life is unfolding for my higher good when I lean in and use the healthier ways, thinking and beliefs I now have to travel it. When I lose connection with Trust… other companions like Anxiety, Fear, Overwhelm and Control whisper and move in. Step by step we can bring awareness to the companions we’re hosting and make more conscious choices and decisions about how we move forward one step at a time.
Interested to learn more about navigating differences in your relationship and/or begin your own journey with Trust?
Book a call to discuss how I can assist you to make the changes you desire or access support from me and other travel companions join Loving Difference, with transformational and surprisingly fun coaching adventures that support your step by steps to reverse the impact of unknown neurodiversity, be YOU again and flourish – in your relationships and your life
With love and sparkle…
Photo credit: Javon Swaby via Pexels
