Best buys from the last year

If you know me you'll know I'm not big on having "things" and buying stuff or spending money unless I need to or it's something I'm going to really enjoy (like a holiday!). But here are things that I have bought or received over the last year that have repaid me infinitely for my investments. All except the first one under £10 or £20 but genuinely life-changing.

Bose noise cancelling headphones. Definitely my biggest investment but totally worth it. My sister very kindly lent me hers while I was in the general hospital and actually I didn't use them too much there. Maybe because I didn't need them much, as I was originally going to write, being in a side room so having a door I could close. But probably more because I didn't realise I needed them. I didn't realise what a difference they could make. I had some normal in-ear headphones I used at times when I wanted to listen to something without closing my door so I thought that was fine - it was all I had ever known. But when some particular noises on the specialist unit became too much I tried out the noise cancelling headphones properly. I never looked back! The sound quality is fantastic and the noise cancelling reduces or eliminates a lot of background noise, particularly low-pitched hums eg. fridge/freezers in supermarkets, traffic noise. They make it more possible for me to use the telephone because at least I can actually hear the person on the other end, and they mean that I have varying degrees of removal from the ambient sound-world. If I play music loudly enough I can't hear my surroundings, or if I just use the noise cancelling I can hear my surroundings but the over-all input is reduced enough to reduce my stress levels. Sometimes just putting them on without turning them on is enough to take the edge off things that are just a little too loud, such as amplified music or voices at church.

Onesie. I love my onesie so much and wear it most evenings. revolutionary dressing gown alternative for people who can't help flailing around. Made of thick jersey (think joggers/tracksuit/hoody material) it is cosy without being that yucky stuff that is sold as fleece these days. Actual fleece is good - the furry stuff NO! Especially if it's shiny. 

Stanley (gift). Stanley is my weighted sloth. He is full of beans literally. He can go in the microwave and be cosy warm if you can cope with the smell his beans make, but if not, he is good for sitting on the knee, accompanying you in the car if in need of some extra comfort, swinging around in therapy sessions to help you stay regulated enough to say what you need to say, and he's very calming if you sit him on your head. NB. It doesn't have to be a Sloth, that is just the animal chosen by Mr Peggy who bestowed this most excellent gift on me last Christmas (OK, so technically not my own best buy, but a best buy!).

A tin of black paint, with gifted variety of sensory lights, shelf and beanbag. This was all that was required to make my sensory nook, and that has been a complete gamechanger. Low stim environment where I can go any time I am at home, to destress, recharge, regulate and either maintain calm or tolerate distress. Also more recently acquired: dark tent so I can have a nook when we go away places, and blinds for the car windows in case I need a bit of down time when I'm out and about.

Love my nook!

Compression socks. These are new and technically designed for plantar fasciitis, but I use them in a sensory way. My feet get sad and dead when they are in shoes all day at work. They need some light sensory input so that I can be aware of them being part of me during the day and this helps to keep me regulated. Wearing them for about half the day under my socks is about right. Other days I use insoles with a big metatarsal support or trampoline park socks with the little anti-slip bobbles on the bottom.

Tangles. You'll rarely see me in public without one! They keep my hands awake and give low-level anxiety an outlet so that it doesn't build up as quickly. They also seem to be quite a good indicator of my stress levels for other people, who can be better able to tell how I am feeling by what I am doing with a Tangle than by any other verbal or non-verbal indicator...
I have a nice collection of other fidget toys/stim tools from spiky spring rings (love these!) to squeezy balls (!) to magic snake cubes and natural objects like stones. Just shout if you'd like any inspiration!

Safe

Writing my post about community, I mentioned that I felt safe in the community on the ward. I nearly went off on a tangent about "safe" and decided it warranted a separate post.

Most definitions of safe state something to do with being protected from or not exposed to danger or risk; not likely to be harmed or lost. I looked that up after I wrote the following, and it fits right in! Danger, to the brain, includes not only injury and illness to the body but rejection by others and not getting needs met. Being despised, ridiculed or feared (all experiences of I guess most autistic people) probably come under that heading too.

Maslow's Heirarchy of Needs names safety
as a basic need required before we can access
the benefits of engagement and learning

I have had many conversations with people who live with mental health difficulties about safe people and safe places. In the general hospital there were some people who were safe and others who weren't. With the safe ones I felt empowered where I was otherwise scared and immobilised. People talk about whether they feel safe (and thus able to work to their fullest potential) with their colleagues. It seems to be a concept that we each think we have made up and yet we all understand. So I thought I'd see if I could figure out what I actually mean when I say I feel safe somewhere or with someone. And how could I say I felt "safe" in an environment when I had daily threat responses there? If safety allows thriving, what characteristics do I want to promote in my communities and in myself, to help me to feel safe wherever I go?

When I felt that I was not going to be judged (or if I were, there were sufficient people around who understood me to counter that message of misjudgment), I was understood, I was protected, and people were kind, then I felt safe. Later on, I found that I was valued. Now, this was by no means a perfect environment and there were definitely times where these things didn't happen, and I know that not all other people shared my experience, but these are the aspects that I think contribute to me feeling safe in any context.

I think a safe person or a safe environment is characterised by:

Non-judgment. I will not be judged or rejected for my needs, my mistakes, my character, my interests, my self-expression or anything that is intrinsically me. Some actions may not be acceptable but my character will not be judged by those around me.

Understanding. My needs are understood. My communication is understood. The people around me know me - they understand what is likely to cause a problem and why, and how to help. They also understand my abilities and give me independence and responsibility in the many areas where that is appropriate.

Protection. There is protection from danger, be this danger from my own actions or thoughts, or from those of others. I am helped to learn to how and when to protect myself. Perhaps a part of this is also boundaries. Although constricting, boundaries are there to keep us safe and every community has them. The clearer they are, the safer we feel, because we understand what can and can't happen, and the consequences if boundaries are broken. When this system fails, we stop feeling safe.

Kindness. I am treated with compassion. This encompasses most of the other points but I think it is so important it needs to be listed separately. When people are kind, the people around them feel safe. See my older post on Kindness here.

Freedom from social expectations (other than boundaries). I added this one afterwards because I was thinking about how my presence or input needs to be optional for me to feel safe. If I'm under pressure from others or myself to be present, the safe feeling goes. If I need to provide something (interaction, performing tasks, making decisions, just generally engaging to a certain level) I begin to feel under threat in case I cannot deliver. On the unit I was completely at liberty (outside structured sessions) to choose if and when I spent time in communal areas, and when I was there, whether I chose to engage with others and to what extent. Nobody expected anything from me and nobody would be offended or go without their needs being met if I were not there or not speaking. When I am truly free from social expectations I am at my best socially because I can do what is best in the moment.

... and the bonus, value and belonging. In a place that is good as well as safe, I am valued. My differences are not only tolerated but appreciated. I don't feel that it is a difficulty to accommodate my needs, but a pleasure because inclusion will also help others. I am not only not a problem, but I am an asset. People are fond of me partly because of my idiosyncrasies, not in a patronising way but because they genuinely see something they like in my quirks. My peculiar perspective is helpful in seeing things differently. I am recognised for the positive additions I bring to a community or relationship instead of my differences showing how I don't belong.

Is this what safety means to you? Have I missed anything out? As I have read this through a couple of times and added bits in I have noted increasingly that the attitudes in the people around us that foster safety are also attitudes that we can cultivate towards ourselves. If I can apply these lenses to the way I look at myself, I will increasingly carry my own sense of safety with me and perhaps become less deeply affected by the responses I find in different surroundings.

Edited to add, after this post from a friend, that feeling safe is as important as being safe. The brain and body respond the same way whether a threat is perceived or actual. And feeling safe then allows us to branch out beyond our safe place or take calculated risks knowing that we can return to safety.

Community, masking and belonging

Community has been pottering around in my mind recently. And then I wrote this and the first half ended up being about masking, so I'm changing the title.

Not this kind of mask!

I wrote almost a year ago about the revelation that I actually like being with people when I am sufficiently regulated. Although I have had friends since I was about 10, I generally had between one and three at any time and didn't feel comfortable socialising with them in an unstructured way or out of the context in which I got to know them (often interest-based or non-rejection-based) until I was an adult. I considered my friends as out of the ordinary in that the enjoyment of being with them outweighed the anxiety (which was decreased by their acceptance or appreciation of my quirks). Until I was an adult I was certainly still performing or "masking" when with my friends, though less than with other people. Even though as an adult and especially more so since being identified as autistic I have become more accepting of my natural self I think I have almost always masked: it was so much of a necessary survival strategy when I was younger that it became automatic and hard to identify how I would behave if I were behaving entirely naturally. For information on masking and its dangers, see here or here or do an internet search.

As I have become more noisy about being autistic and less hide-y, I have begun to lose the mask. Most of this work has been done over the last year. 

A perfect storm of conditions came together - I hadn't gone there to try and make relationships so I didn't have any expectations of myself or any pressure, I'd never met any of these people before so they wouldn't think it odd if I was different from how I was in the past, I felt safe, I was fairly well convinced I was not going to be judged (by and large anyway, and if I were there would be sufficient people around to give me the counter-reaction), my "behaviour" would not be out of place or unusual (OK, it was sometimes unusual, but it was very much accepted and even valued and I learnt that it was OK or even good for some of my oddities to become parts of my identity), and I was so much reduced to nothing as a person that I didn't have the will or the energy to hide anything. It was a chance to find out who I am when I don't pretend, and a bit like a reset button on my life. Who am I when I stop behaving how I think I ought to behave because I want people's respect?

This, I think, is the most I have ever been part of a community, which is sad, and maybe one reason why I was so sad when I left. In life I have been part of many communities. In some I have been more myself and in others have masked a lot, but never have I been able to simply be until this point. On second thoughts, perhaps it's not all sad. Perhaps it's happy that finally all the pieces came together at once to allow me to discover that there is a possibility that I can be me, and I can be me safely and happily with other people. And that the time when I didn't mask was when I first found belonging - it was my true self that belonged, not some self that I thought I was meant to be. There were things in my past communities that could have been more inclusive and helped me to belong, and there were things in me that needed to be in place to get the most out of the opportunity (look, both of these things can be true!! If you read my earlier post...). The right people, the right environment and the right point in my life experience came together to give me a kick-start on finding myself, accepting myself and educating others about myself.

Now I have to learn how to translate that into the real world. The real world is not made up of only people who understand neurodiversity and are full of compassion. But the more I carry on being me, the more I find out just how many of those people there are. And the more I carry on being me, the more people will become compassionate understanders of neurodiversity as they find out that people like me aren't scary or dangerous or incapable, to be despised or wary of or changed or hidden away. 

I have often been scared of communities in the past because I have been either on the peripheries of them or an outcast. Sometimes I have sort-of-belonged-a-bit but never felt comfortable except with a couple of people. Communities have never been somewhere I can relax. They have been fraught with danger and vulnerability, so many ways to get it wrong and find out once again that you don't belong. So I have preferred to stay with my one or two people outside the circle where we're happy. And I'm still happy to be there, but I've found out that there are circles that I do belong in too. If I am naturally myself the circles start to find me. My work circle is becoming a place of belonging - there have been pockets of belonging there since day one, but I restricted that circle by hiding bits of me. As I start to be myself, instead of my circle shrinking and my being cast out, my circle is growing. I am becoming part of the family. I am valued and cared for and I am OK with that. Actually, it turns out that I like it. 

If I don't accept myself I don't give others the option of accepting me. They may choose not to, and there are certainly still those around who don't (the security guard outside the supermarket when I shutdowned yesterday... luckily he wasn't nasty, just annoying, and the Supermarket Lady and Hair-Changing Passing-By Work Peggy were very understanding and helpful), but if I judge what I think they'll do without even giving them a chance, then although I may be protecting myself, I may be missing out too.

Will I be brave enough to offer this opportunity in some of my other communities I wonder, and will they take it up? And will I find anywhere I belong quite as naturally as with my fellow loonies?!

Now I have discovered that being part of a community is something for me too. It may be scary and involve risk and investment, but a safe community for me is a thing that can exist and a place I can thrive and belong and have all those things that people think autistic people don't want or can't have. Only because we've grown up in a society where we don't understand most people and most people don't understand us do we all have those beliefs. Autistic people do benefit from belonging, and we can belong safely.

Picture from https://artmiabo.blogspot.com/2015/08/colours-in-circle-abstract-art-by-miabo.html

What is this post even about?

I'm trying to write a post that feels like it needs to be written, but nothing I write feels quite right. Usually when I don't quite know what I want to write, I start typing and something forms itself that seems to get whatever I needed to get out of my head out of my head. As it were.

But I've tried this one several times and it's still not coming together. I want to write about how the events of a year ago are affecting me now, about how life is different and how I feel about it all and what the brain does and what still affects me and how I am coping with returning to all the previous bits of my life that went on hold. But I can't seem to gather my thoughts or pin them down. I can't find the nub of what causes me trouble and why. I can't identify the things that are happening in my brain or make sense of them. 

Sometimes I'm overwhelmed; sometimes it's like it switches off and none of it seems to matter, but this is accompanied by a sense of foreboding that it hasn't gone away - it's just hiding, ready to pounce when I'm not expecting it. Sometimes I'm too weary to care, but I know that is temporary too. I need to find a way to unravel everything that has happened, to acquaint myself properly with facts and feelings and integrate it all into my story so it stops jumping out at me, incessantly demanding attention, sending me alerts and notifications and generally causing trouble.

Ideas on a postcard please!

A different path

A year ago I was a good way along a treacherous path, with the danger increasing daily. I was terrified on that path in that dark place but all other routes had long since vanished beyond my ever-diminishing sight. Soon the fear faded into numbness and the darkness seemed normal, the path familiar. Awareness shrank and life became a one-track survival challenge from one moment to the next. 

And in another way I was blissfully unaware of the depth of the danger I was in. I knew I didn't like it and I just wanted it to be over, but to be honest, judging by other people's accounts I still don't quite accept how bad things really got. 

A year later. So many wonderful wonderful people have given me so very much. The help I received when I continued (and continue) to make poor choices feels too much; undeserved. I am so grateful to each person for each moment of care - I can't put into words what those moments are and how precious they are and how each one becomes a stone in the new path I'm trying to build that leads out of this place.

A year later. Why do I want so badly to run right back to the darkest place? Why does the thing that brings me only danger and that wants to steal my life feel like a place of safety? Why am I constantly drawn there, wanting to visit, to stay a while, hm maybe I'd like to live here.

Everything in me compels me to be there. I need to be there. There isn't another choice - that is where I should be. Yet I have to walk away. Each step is fear and horror, where it should be hope, joy and freedom. I've had so much support, so much sense, so much time, I'm sorry I can't see what you all see, but I hope the fact that I'm still trying to walk away shows that I trust you. That each time I find myself heading back towards the darkness I ask for help, I turn around and I try again despite everything in me screaming at me that I'm destroying myself and leaving behind everything good and safe. I hope that shows the value I place in the people who help me. I'm trying to trust you that this path I'm building will be worth the pain. 

Why am I a body-listener?

In my previous post I found myself playing the piano. It made me reflect on how thankful I am for the skills that I have been taught throughout my life that bring themselves into play to try and help me. Playing music, listening to music, letting my body move in the ways it wants and needs to, seeking out dark and quiet space alone. Most of these skills were taught to me in a different context from how they help me at the moment, but they repay my investment (and that of those who teach/taught me or enabled my learning in different ways) in them over and over. I'm enormously grateful for my ability to listen in to what it is that might help in any moment - in fact it more often happens quite subconsciously that I find a compulsion towards an activity which will help to regulate me.

I began to consider this inner awareness and its origins. Is it innate in me or have I learnt it? Currently reading about Developmental Movement Play (and recently listening to a podcast sent me by a dear friend) I am reminded that that our culture as a whole tends to be painfully disembodied, with the exception of a few disciplines that have a clear focus on inhabiting the body such as yoga. Why am I less so? Is it because I have always been active? Perhaps yes, and perhaps no. The activities I took part in as a child, teenager and young adult demanded mastery of the body. This involves high-definition awareness of what the body is doing but leaves little space for asking it what it would like to be doing. 

Is it because I have spent time practising yoga and tai chi? Perhaps this has helped, but I have a feeling I did not quite grasp this aspect of yoga until after I had discovered developmental movement play. Was that the magic moment? It was magical in many ways, but the approach of JABADAO (search my blog for more posts about JABADAO) and body-listening, body-communication etc seemed to come quite naturally to me. It was as if I had found what I was made for, how to really be. I noted that it wasn't like this for everybody.

So that stuff was and is instrumental in bringing the whole concept to my thinking brain (as opposed to my body-brain wherein it had been confined previously) and helping me to utilise and develop the skills to be consciously aware of what my body and brain need - to stop and ask them, and to follow their suggestions, but I don't think it can take all the credit. I think what it did was to begin to free what was hidden in there all along, squashed somewhat by trying to fit in to our society, but not squashed as much as most people! Because my brain is more focused on the sensory world than some brains, I find it easier to access these things, or harder to ignore them. So sometimes I love autism!

The body speaks if we care to listen

I'm super dysregulated today. 

My first clue was that I was standing on my tiptoes waiting for my tai chi class to start. I actually thought I was feeling a little calmer this morning because our shower has been fixed so my morning routine is finally back to normal (see the executive function post to imagine the difficulties with figuring out how to wash yourself and start your day when your routine is not available!). But when Instructor Peggy (he's definitely part of my network of supportive Peggies!) joked about how tall I was I began to pay attention to my body and discover unease there, outed by my body's attempts to regulate itself. I noted that even though attention had been drawn to me, my feet really wanted to stay with the extra pressure of being on tiptoe. I was anxious. 

Later in the day my body has led me to playing the piano, reading, painting, and rolling on the floor. I've noticed it hasn't wanted to do any of them for very long, whereas often it will stay with one occupation all morning or afternoon. It's feeling unsettled, which makes a lot of sense given the amount of changes and unpredictability and stressful situations coming up in the next week. Each activity has helped a little in the moment, but I don't settle to anything. Now it has sent me blogging, instructing me to delay the supermarket trip (it felt a supermarket meltdown coming on - I wonder whether it will after I've done this). It's trying to help me out - sometimes my body knows better than my brain. 

Yesterday it popped me in the nook for most of the day which was quite appropriate but clearly today is different. The anxiety is mounting and so the body is looking for the best way to stay regulated. Let's see what it brings me to over the next few days!

I didn't have a supermarket meltdown. I took my time, used my familiar soundtrack and navigated the shop without drama. I have enough experience by now to know that my body usually guides me soundly. Now maybe I should listen to its guidance on emotions too... I reject them but then they just escape or leak out uninvited - tears in that restorative yoga pose, dreams about having meltdowns, they're all messages telling me something needs attention.

Both of these things can be true (dialectics)

 Sooo, here is a thing that has popped up in an awful lot of conversations this week. Different people, different scenarios, and not just me going on about it special-interest-style - it's emerged spontaneously in conversation, brought up by either person. Although true to character it is often me that gets excited and starts yelling about it when I notice we've ended up there again. I do love making links and identifying things: it helps the world connect together and make sense.

I will always remember a particular nurse who was oft heard to remind patients "both of these things can be true." I think of her every time I exclaim it mid-conversation, and I will never forget the mind-blowing effect it had on me the first time I heard it. It's a devastatingly simple concept, but was a whole new world to me, two things being true at once, the world not being binary black and white boxes. Transformational!

When I am anxious about an upcoming event I get asked, "will you even enjoy it at all"? or "is it worth putting yourself through this?" and I find myself trying to explain the conundrum of how it's OK to go because although I am and will be anxious, I will have fun too. Then I realise it's really simple: it's that thing again! Both of these things can be true. Although anxiety may at a first glance appear to preclude positive emotions, in truth I can have anxiety and have enjoyment at the same time. I have anxiety most of the time so it's pretty lucky that's true or my life would be incredibly dark and dismal. Two statements that seem completely at odds with one another may actually both be true.

The principle works for a whole host of scenarios. 

A teenager may want independence and want the support and care of their parents

A parent may love their child and impose consequences for their behaviour

You may have an argument with someone and still be friends with them

You may be terrified of something and you may want (or need) to do it anyway

In some cases we may only even see one of the truths - certainly only give one any weight. Because I have a one-track mind, I forget that more than one thing can happen at once. I note the uppermost thought or emotion occurring in a time of distress and take that to be the truth. 

Because our brains are programmed to keep us safe they are particularly alert to danger and keen to warn us of potential threats (remember if our brain perceives a threat as real it acts as though it is, whether that makes logical sense or not), so we are likely to form speedy assessments in situations where there is any possibility of "danger" (including danger of being rejected or overwhelmed). This can give us a tendency to think in a very black and white way (particularly characteristic of autistic people anyway), to jump to conclusions and mind read what we assume others "must" be thinking. And it means that the uppermost thought or emotion tends to be the most threatening one.

If I have a disagreement with somebody, in my head I think they think I am wrong, which in the immediate instance, they probably do. The trouble is, this becomes my truth. I think that that then defines their opinion of me as a person. I forget the quite possibly simultaneously-occurring truth that they like me and/or respect my opinions.

I make a mistake and I forget that alongside "I got it wrong" can exist the truths "I meant well," "I tried my hardest," "I am loved regardless."

So I'm glad this has come up repeatedly in my conversations because it's so easy to forget, but it's one of the many wonders of DBT!

Scenarios paraphrased from: https://www.mindsoother.com/blog/how-to-think-and-act-dialectically

Further brief introduction at https://www.sheppardpratt.org/news-views/story/dbt-101-what-does-dialectical-even-mean/

What I'm doing to cope

I thought all this talk of sadness might be bringing you down, so I've decided to give you a peek at some of the many and varied strategies that are making life better and keeping me going!

Small, manageable projects, some of which are wonderful to share, others of which are most useful alone.

Creating my sensory cave - this one is a double whammy because as well as a project to do, it is already benefiting me enormously, and more than I dared to imagine, as a low stimulus space where I can be alone, in control and recharge.

Gardening with Mr Peggy - this is so much fun, and something we've discovered we love to do together. I've always wistfully thought I'd love to garden, but usually I just kill stuff! We're trying some flowers and fruits so watch this space! And in amongst them are some really meaningful plants for me, given to me by various people who I'm missing a lot. It helps to grow these plants and think of them.

Treasure basket - of favourite sensory items I've collected from meaningful places and perfect little bits given to me by new friends which mean the world. I can tell you the story of each piece.


Walks in the countryside - especially when I'm on the phone, I wander aimlessly out of the village and see where I end up! Good job I have a good nose for getting home again! Being outside really helps me to regulate my body and emotions and to be calm and process. Exploring with Mr Peggy has been great fun and exciting and just a lovely way to spend time.

 






Guinea pigs - always a sensory delight, good fun and cute!



Yoga - a constant that has stayed with me from my time in hospital and one benefit of the lockdown! My weekly Zoom yoga class with the wonderful Hania Therapies. Amy has also been giving a daily 15 minute live yin session throughout May - perfect!

Wordscapes - the one and only game app I have on my phone, but a really useful distraction I've brought back from my time away from home to keep me going in difficult moments. Sporcle is also good for this if the laptop is to hand.

Family and friends - I can't count the number of well-timed messages I've had that have helped me through difficult moments, knowing that I can send a message to Mr Peggy, a Peggy sister or a Geordie Peggy any time and they'll have my back.

Blogging - writing really helps m discover and process what I'm thinking and feeling. As I always say, I do this more for me than for any of you!

And of course, a bit of at-home therapy, cracking out the CBT, DBT etc etc!

Do I have to be sad? Why?

The functions of emotions are to motivate behaviour, to communicate to others, and to communicate to oneself. This short clip explains beautifully. It will use no more than 150 seconds of your life but could open a whole world of understanding to you (sorry, I really love DBT!!).

As you'll know from my previous post, I've been visited a lot by sadness recently. Now, instinctively I really hate sadness. My goodness, it hurts so much. Loss, endings, emptiness, aloneness - they're not pleasant to feel. But I've been on this therapy train for long enough now to pay attention. My life experience tells me that if I ignore an emotion is only going to spring up on me and shout its message louder until I deal with it. It might bog off for a bit, but it will come to get me, and it won't be pretty. And by then I probably won't even know why I have it so it will be so much more difficult to resolve.

I've made a treasure basket (bowl) of
sensory objects that are meaningful to me

So the sadness is shouting pretty loudly right now, and I've made a conscious effort to allow it to be there, talk about it, and to bear it in a healthy way (self soothe, distract, mindfulness - the three pillars of emotional regulation oh how I love DBT ha ha! Useful recently have been working on my sensory cave project, being outside in the countryside, listening to music, starting some gardening projects, talking to friends/family/professionals, listening to meditations, time in my sensory cave and being honest about how I feel even if I'm worried about the effect it will have on others).

The next step, as I like to get my old Brian engaged in things too, is to really explore sadness a bit more. What is it for? What is it telling me? How can I act helpfully towards it to ease my suffering or bear my pain (suffering being an unnecessary addition to pain - there's a whole other can of worms discussion!)?

First port of call is my emotional regulation handouts (from Marsha Linehan's DBT Skills Training Handouts and Worksheets, 2015). Amongst others, sadness is prompted by losing something or someone irretrievably, being separated from someone you care for, being alone, or feeling isolated or like an outsider, things being worse than you expected, things not being what you expected or wanted. Well, my sadness is pretty understandable and accurate then. (As an aside, biological changes and experiences are also included on each emotion sheet, which can be really helpful if you're not sure what emotion you're feeling.) No need to act opposite!

I'm interested to look at the listed expressions and actions of sadness then, to see whether I've been using any of them. Do they come naturally to me, or perhaps not, because I have tended to avoid sadness where possible? Maybe if I don't use them naturally they could help me process the sadness.

• avoiding things
• acting helpless, staying in bed, being inactive
• moping, brooding, or acting moody
• making slow, shuffling movements
• withdrawing from social contact
• avoiding activities that used to bring pleasure
• giving up and no longer trying to improve
• saying sad things
• talking little or not at all
• using a quiet, slow or monotonous voice
• eyes drooping
• frowning, not smiling
• posture slumping
• sobbing, crying, whimpering
• other _______

Looking at the list, some seem helpful and others less so. Perhaps more markers than suggestions, or ways to understand our behaviour compassionately before inviting sadness with us as we continue life. I think the list demonstrates how we can get stuck in a spiral of deepening sadness too, as several of those actions will feed back sadness to the brain and increase the intensity of the feeling.

Just hope you're not such a snotty crier as me!

Some, like crying, are definitely good to try though: no matter how much it feels like you'll never stop once you start, I can assure you it's not true! I have found if I can let myself cry (proper crying, not the leaky face type that comes upon me uninvited!) it really helps to be able to carry on life. It's an acknowledgment. Yes, I am sad. I have a gap in my life and it hurts. That's OK and I'm going to gently carry on with what I want to be doing in life. (Love to throw in a bit of Compassionate Mind too...)

Lastly, the sheet looks at aftereffects of sadness, which could include not being able to remember things, feeling irritable, touchy or grouchy, blaming or criticising yourself, ruminating about sad events in the past, insomnia, appetite disturbance, indigestion and others. Ties in nicely to the post I'm planning on executive function, and hopefully allows us to be a little compassionate to ourselves, understanding why we may have some seemingly unrelated difficulties, and continuing to care for ourselves in a constructive way.


As a final note, another great look at sadness I found is here (What is Sadness?). It takes you through a similar process but points out a few different things such as some people's tendency to avoid sadness (See also this 80 second clip on avoiding sadness. It references Borderline Personality Disorder but is relevant to most people.) and how we may want to respond to others' sadness. I particularly like this quote on the function of sadness:

The universal function of sadness is to, in some way, signal for help. This can be a signal to others saying that we need comforting, or to ourselves to take some time and recoup from our loss.

That is the message I'm going to take away from this curious little exploration of my sadness. I have a human need for comfort, and it is entirely right to experience that need and tend to it in a healthy way. As my psychiatrist told me all the time, sadness is there to show that you care.

I won't wear make-up on Thursday: Body Intelligence gleaned from staying in bed!

OK, it's true I didn't wear make-up on any of the other Thursday either, but that is a reference for the Cool Kids who both wear make-up and listen to "actual music". Maybe I should have picked the more accurate line from the song "I will do nothing on Thursday: sit alone and be."

That is exactly what I have done. Well, I went and let the chickens out about lunch time to get rid of the anxiety that I hadn't done that or fed the guinea pigs. Brought the Piggle Peggies in for moral support and returned to the land of bed. At 3.30pm I even progressed from a prone, under-several-duvets state to seated with just one merely draped over myself.

I had done that thing that's meant to be sensible (although admittedly it may come slightly out of desperation too) where you communicate that you need something before utter disaster hits. The trouble I have discovered though, is that then if you get the thing Brian tells you in no uncertain terms that this is a catastrophe. You shouldn't have the thing: no-one else has the thing - why are you any more entitled to the thing than anyone else? Accommodating the thing has cost other people: you are an even worse person for needing, and taking, the thing. You didn't really need it anyway, you just quite fancied it - you could, and should, have managed without it; after all, nothing terrible happened to show that you needed the thing, so you must just be greedy and lazy. Now that you've had the thing, what if you actually need it in the future? You've already had it so you'll have to manage without next time. You can't carry on like this, "needing" things left, right and centre, you need to pull your socks up and get on with life like everyone else.

Contrary to appearances, I haven't just come here for a whinge about the Brian. In my nothing-ness and the approach to it I stumbled on a couple of observations.

The sensory may be more involved than I think.

A perfectly adequate set of resources for
the day

This is funny, because I've just started reading a book by Penny Greenland of JABADAO* about (well, partly about) how body intelligence (the is a whole chapter just introducing the concept of what this is) can be used in the mind together with intellectual intelligence to approach everyday issues and problems.

In the lead-up to realising I needed some space I first noticed my brain responses: getting irritable, decreased patience, increased behaviours and unhelpful thoughts. Then as things progressed over the next day or two and I became more stressed rather than less, on the final day I was much more aware of sensory responses. The piercing vehicle-reversing-beep I had to block from my ears, a scratchy label in my clothing, appreciation of darkness. The all-pervading discomfort caused by a foreign and distasteful (to me) scent on my fleece, that became so unbearable I had to give up my fleece. The proprioceptive/touch dysregulation of not wearing my fleece when I'm already stressed. The overheating of my body from the down bodywarmer I luckily had in my car that I fetched at lunch time to solve the proprioceptive problem.

To be very brief, something like this...

I don't know whether it's that the warning signs come in this order - the lower-level stress is signified by more cerebral warnings and the sensory warnings signify that things are escalating - or that my awareness works in this order: the more significant my stress levels, the more I function on a sensory level and the cognitive loses priority. I suppose processing capacity is decreased when under stress so this would make sense. Now that I think about it, there's a lot of theory that explains this, but you can go and Google that - I can't be bothered to talk about it now (but if you ask I'll go and find it!). Yesterday I also began exchanging words quite bizarrely. I explained to my fellow class Peggy that I was going to cut the Duplo lengthways to make it fit. I meant Velcro. Just picked the wrong word. I used the word purple instead of person to the same colleague about five minutes previous to this. My thoughts were jumbled and I wasn't properly paying attention to myself or anyone else.

I came across a quote in the JABADAO book today: "This woman's focus has changed so thoroughly from intellect to body that stringing words together has become difficult. She has swapped an intellectual way of being, for a body way" (page 33). I laughed aloud when I read it because it seemed so apt. The lady in question had made this transition intentionally, but I had perhaps begun to make it unconsciously, which is why the kind of work described in the book is so important. Becoming aware of and utilising this body intelligence can help integrate the systems and employ them in a helpful way.

As I was sitting alone and being today, I attempted to be mindfully aware of my frustration, my guilt, my fear and anxiety (two distinct states/thoughts for me) allowing them to be, while listening to what my body needed and permitting it to have that. It meant I stayed in bed for a really long time. It's now 4.30 and I'm still there in fact. I never stay in bed for that long. I sometimes have days where I stay a pretty long time, but eventually my body tells me it's time to do something else. I can feel the time approaching, but it hasn't come yet, and I'm trying to ignore my own judgmental feelings and my feelings about how it would appear to others and not rush my body into doing what it's not ready for.

As I knuckled down and did nothing I found some of the reasons why here was the right place today. They were mostly sensory. It's not that I'm in a dark place mentally and can't "summon the motivation" to get out of bed (don't get me started on people making those kinds of judgments). I am not psychologically bound to being here. Neither am I intensely physically exhausted and thus unable to get up, although I am tired. This time, my body has told me that this is the right place for it to get what it needs right now.

Not laziness. Important work to enable
future functioning. Down with shame.

What it needs is a lot of touch/proprioceptive input. When layered for weight, duvets and blankets give my body the perfect way to receive input to my body's entire touch receptor; its largest single organ, the skin. A friend once told me of a discovery that the more of her that was touching something, the more comfortable and relaxed she felt. I am exactly the same, and the only thing I have found that beats a good pile of duvets is swimming. When I move in water (not necessarily in a conventional "swimming" way, but in the way my body wants to), it moves past every cell of my skin. I find it exceptionally helpful and regulating, and now that I've written that, I've realised that was my first sensory clue to my dysregulation. I noticed the immediate calming effect of being in the hydro pool the day before the other sensory clues and commented on it at the time.

The other reason I needed to be in bed was to regulate via the olfactory sense. I would certainly never have intentionally sought this method of helping myself, but sometimes my body knows more than my brain (body intelligence...). Now I know that this will disgust some of you, but try and let go of your social conditioning for a minute and bear with me. Our own smells and those of our loved ones are some of the earliest developmental experiences for our olfactory sense, and thus easily processed and calming (credit Joanna Grace). I became aware part way through the day that I was frequently seeking this input, putting my fingers to my nose, and even smelling my own shoulders and arms (weird, I know!). When I leant over the other side of the bed I smelt Mr Peggy's smell, and after stroking the Piggy Peggies my left hand smelt of them. All of these were contributing to the gradual regulation of my body.

The final piece of body intelligence I gleaned also came from Hopping Home Backwards. There are little exercises throughout the chapters which aim to help the reader understand better by experiencing what is being discussed. All I could notice was that every time I tried one - they are all about listening to the body and what it wants - all mine wanted was stillness. It didn't lead me into any kind of movement unless there was a part of my body that wasn't touching something and then it asked to curl up smaller or snuggle into a bit of duvet. For me this was surprising. Mine is a body that likes to move. It needs to move. It needs to stretch a lot and it is useless at sitting still. But all it would do today was be still.

And I'm pretty sure it was right. I was right when I communicated that I needed some space. Whatever the Brian said afterwards, and it is shouting loudly as I write this, I did the right thing. And it was right to do the right thing. My brain can sometimes lie to me, but my body knows and tells me the truth. You've done enough. Sit alone and be.

*Hopping Home Backwards, Greenland 2000.

Doesn't play well with others

Been writing a lot, not about me. Clues as to the kind of week I've had. I felt a little bit hypocritical posting wonderful posts about wonderful things when the internal life has in all honesty not had an enormously pretty week. Half term hasn't sat right, I've been surviving instead of replenishing as I'm supposed to in the holidays, and I'm scared witless of what will happen when I go back to work because of that. Poor Mr Peggy has barely seen me, and when he has I haven't really been there. He doesn't know about any of this because this is the only way I can manage to tell him. Sorry, and thank you, and I love you.

Anyway... enough of putting you honestly in the picture! The Brian told me to write about being misread, and the dangers of performing too well.

Indeed, I have required every coping method under the sun, good
and bad, and as my doctor commented, a few more besides!!

It's a well-known fact that people with autism (including people who speak and people with Asperger's) have difficulties with communication. Stereotypically, verbal people with ASC tend to take things literally, don't always get jokes, misread social situations etc etc. But how often do we talk about what happens the other way round? What about expressive communication?

When people speak and have honed their copying and performing skills sufficiently to generally pass as "neurotypical", it is likely that others will forget or be unaware that they may have difficulties with expressive communication. If you're "social" enough to survive conversations and social situations then you're one of the crowd and judged by their social rules.

That can be gratifying, but I discovered today it has its hidden dangers.

My doctor's surgery very usefully has an online service, which is great for people like me. I can book appointments without the dreaded speaking machine (well, if there are any... and not with nurses or Urgent Care), I can check when my appointments are (hello last minute - or any other time -anxiety!) and I can read my notes on there too (useful for all sorts of reasons).

I read my notes after an appointment and realised I had come across as "guarded", "closed" and elements of my demeanour were noted. Now, I don't have a problem with these observations because the are entirely accurate in a way, and I imagine are clinically useful, particularly in the context of how I may present at different times.

The thing is, although they would conjure up a very accurate image of my outward appearance, the assumption about my inner state, specifically my intentions, is misleading. My motivation (albeit subconscious) in avoiding eye contact and curling my legs up is to increase my communicative capacity. Despite appearing guarded and closed, by regulating my sensory and emotional world in these ways (eye contact is stressful and exposing at the best of times, and increased touch/proprioceptive input over more of my skin is calming) I am trying to con my body and brain into thinking they are safe and that it is OK access the important and very personal information and then to try and give that to somebody else.

The long pauses and short answers are testament to the difficulty I contend with to produce even the little information I am giving. They don't mean I don't want you to know. They mean it's even more important that you do know. They mean I know it's important and that's why it's more difficult for me to get it out. I need extra time, more clear and specific questions, understanding. (Although sometimes I might not be able to tell you because you've asked... that's a different matter and you'll probably receive exceptionally clear "I don't want to talk about this" vibes, even if I do want to talk about it but can't right now because you've just asked!)

So, the observation that I am needing to feel safe and I am not communicating is absolutely valid and a useful indicator of mental state, but it is easy to misinterpret these presentations as implying a wish not to communicate instead of the very real and painful need to communicate. I would hazard a guess that this doesn't just apply to me.

The thing that got me was that I wouldn't have known I came across that way unless I had read those notes, and it makes me sad to think that people might interpret my behaviour that way. Think of the potential impact of a lifetime of that kind of misunderstanding on someone's social life. And wellbeing. If I cross my arms it's because I need some more physical feedback, not because I don't like you or don't want to talk to you.

To dare to expose something real and important about oneself - a wish, a choice, a need, a feeling - is a terrifying, monumental task (when I finally finish the book I'm reading about 'Exposure Anxiety' I will write a big old post on it!). For some context, consider that my brain tells me that a blink of the eyelids or a pressing together of two fingers may even be an immoderate display of emotion; anything more could be an unforgivable betrayal of the insides. Please don't misinterpret my efforts to battle the anxiety brought on by even contemplating such a task as outing the ins.

So when you next see some communication expressed, question its intention rather than assuming what you would naturally infer. Use your knowledge of the person and their nature. You can try asking if you're not sure. We may or may not be able to answer. Maybe we'll write a blog post about it later.

Sensory Self Care Saturdays

On Saturdays I roll out all the coping strategies.  Every Saturday is a self-care Saturday. They're not necessarily the same every week, but some of the current favourites (I won't list the negative ones...) are walks in the countryside, cuddles with the Piggy Peggies and painting by numbers. Today as you can tell by the blogging activity, writing has been one, as has seeing a friend.

I've written before about how sensory experiences can help with my wellbeing (here is a good place to start) and because one of the aspects about my autism that I get asked about most frequently is sensory needs, I thought I'd give a window on one of my coping tools of today.

I had a shower.

Sounds simple, but let me see if I can give you an idea of how I had a shower and what the shower did for me.

Before I had my shower I stayed in bed. Usually my self-care Saturday begins with a lie-in, followed by pilates - just the ticket (combined with Friday night yoga!) to getting back in line with myself. This was a hard week though, and Friday was difficult and included bathroom floor time for lunch, yippee. I have learnt that it is both survivable and at times beneficial to follow my body's hints that departure from routine would be wise. I cancelled pilates and stayed in bed. For ages. The weight of the duvet(s) gives wonderful proprioceptive feedback to the whole body and savouring the experience nourished me.

When I had finished duvet-ing I took the luxury of leaving my contact lenses out and showering with the light on.* I'm very short-sighted so this transforms my sensory experience: my eyes focus on the water cascading immediately before them, glistening in the light - sparklewater! (see also. sun on the sea or a river...)

I had no time limit on my shower; no deadline for leaving the house, no stressful event to prepare for later. I closed my eyes and tipped my head back, focusing on the sensation as the water woke my scalp and face. Nice and warm - bed temperature eases the transition on the body... calm. Tappy tappy touch dancing on my skin.

I have my phone set to play "My Mix" on YouTube - no stress of deciding what playlist I want to listen to, no decision making, but music that I like because it's made from my playlists.

I turn around to join the sparklewater again and become absorbed in the way the shadows of the water drops play on the white bathtub if I shake my hands and move my fingers.

Eventually I move on to wash my hair and myself, with familiar scents and an unchanging routine. When I start to overheat I know I've been there long enough and I share a last few moments with the sparklewater before I say goodbye. My shower has a five-second delay on its "stop" button - this Godsend makes the transition more bearable. And I know I can come again soon. I am so very grateful that I am privileged enough to be able to access this form of self care: physically, culturally, financially.

Photos just don't compare.
Go and try it for yourself if you can.

*It's funny, because it's there every day, the sparklewater, but it's a special treat to see it. My contacts give me so much (I cannot focus beyond about 20cm without them and I have much better vision than with glasses, not to mention they are so much simpler, especially in my job!) but in entering the world of the distance-seers I lose the beauty of the morning sparklewater. On weekdays I also shower with the light off because dimmer light is more calming for me and our bathroom fan makes an unholy racket too, and I need to retain all the calmness I can on schooldays!

Stigma: Mental Health Awareness Week 2019

I thought I'd address stigma as that is obviously one of the main aims of Mental Health Awareness Week: to get people talking and reduce stigma, to remind people that "people with a mental health problem" are just people (most of us will experience some aspect of trouble with our mental health at some point in our life), to help reduce feelings of shame and isolation.

As I pointed out earlier, I write about mental health on here because it is something that closely ties in with my autism and a large part of my life recently has been managing these. I consider myself pretty understanding of issues concerned with mental health, I try and educate myself on how different aspects affect different people, I try and be a good friend. I will happily fight for other people's needs and increasingly voice my own on occasion and I will shout (metaphorically) about whatever is needed to reduce stigma.

So what should I post as a special for Mental Health Awareness Week? It would be appropriate to write a big reveal of my whole mental health story, of a condition that desperately needs people to do just that. But it turns out I, the inclusive, mental-health-aware person, have too much stigma. I still have too much shame to tell the world the less palatable truth about the ins and outs of trying to live with and recover from my particular brand of Brian. It's fine if it's someone else, but the fact that I can't own up to my own truth displays a level of stigma I don't care to be associated with.

Because I like to make people happy and to reinforce to myself the positive aspects of life and recovery I tend to make sure I end on a positive when I'm writing: the positive coping strategies I've used, the fact that it's OK to have difficult times, the silver lining to the cloud. This is a good thing, and it's important to highlight hope because it saves us, but it might leave you with a false image of me as a super-well-adjusted person winning at living with and recovering from mental health problems. I still have shame. I still cry on bathroom floors. I still use bad coping mechanisms. I still hide, so this is a bit of a non-post really.

But in usual style I will come round to the positive at the end. My new GP gave me a beautiful nugget this week. She is fab and seems intent on supporting me as I carry on post-discharge. She asked about things I do to help when I'm having a difficult time and I ended up explaining as I have to many people before "I am the queen of positive coping strategies. I have them coming out of my ears (metaphorically). And yet we're still here".

And where would you be if you didn't have them?

Hm, touché my friend.

(I'm pretty sure others have pointed this out before - my favourite Welsh Peggy for certain! - but for some reason it hit the spot at that moment). It still leaves me wondering where to go when I've used every tool in the book and still need the oh-so-effective maladaptive strategies, but at least I have strategies to get me this far. And re. my last post, just because I'm where I am right now doesn't mean I will be forever.

Maybe I'll tell my story another year.

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!"