Fine Mesh Part II: Sensory

Aside from language, I of course receive sensory information through a fine mesh. In fact perhaps this should have been Part I because the sensory world is more fundamental, but as a linguistic being my brain approached it through the linguistic lens first.

In the sensory plane my differentiations are again narrower and slight variation from normal or my expectation results in having to recategorise and my brain alerting me to "Error!". I think the narrowness of filter also means I can perceive sensory input as many, many pieces of data that I must process, rather than a whole or a few items. Or maybe the mesh is narrow because I perceive the input in that way?!

When perceiving through fine mesh, the simple data "I am hearing a sound and seeing a movement" may become "I am hearing another sound as well as the multitude of background noises, and the new sound is made up of differing pitches/timbres/volumes etc. I am also seeing a thousand new pictures a minute as something in my field of vision moves." My brain is trying to work out what all those pictures and sounds add up to and how that aligns with previous experiences to see whether I need to respond in any way.

It's no wonder I end up overwhelmed sometimes - even though I may not be consciously processing each item my brain is working overtime for me. A messy room becomes not just one messy room but 3264 (see "wild exaggeration" below!) items that need tidying.

It is said that autistic people tend to focus on the finer details rather than seeing the whole picture and it's hardly surprising if what we are perceiving is a whole lot of input that makes up the picture, rather than simply the picture! This goes for the metaphorical picture as well - any scenario in life such as a social situation or an event unfolding as well as a literal piece of art.

Perhaps prosopagnosia (face-blindness) is also related here. I am only very mildly affected by this, but maybe if I am perceiving many pieces of information it is harder to put them together to recognise one face. If there is a minor difference or lack of context the data don't all match so the connection is not made. And yet in compensating to over-recognise... maybe there is one feature that is similar and so in knowing that I need to make connections I assimilate the new face to one I know.

I've just realised that this chimes with something Temple Grandin speaks about in her book Thinking in Pictures that I was given for my birthday, and also Donna Williams in Somebody Somewhere. They both speak about fragmented perception and I have only just twigged that they are speaking of a similar (though in Donna Williams' case, much more extreme) idea. To literally see/hear/sense the fragments must be a very different way of being.

Another aspect of sensory input being finely sifted for me is similar to what I described in the previous post about linguistic accuracy. I may see things (or hear, smell, taste, feel etc) in a more precise or attuned way, so I might register a display at school not being straight or symmetrical more quickly than others and be more bothered by it. A speck of dirt on a dish I've washed is detected by my fine mesh and recategorised as "not clean". Perhaps that's why I love asymmetrical designs: errors don't glare in the same way, and an intentional "error" is fun because you meant it (cf. puns, wild exaggeration of numbers, language play like spoonerisms or swapping vowels, mismatched socks etc...). 

I tend to eat one food per forkful because too many flavours and textures at once are overwhelming and I don't taste or feel any of them - in fact it blew my mind when I realised as a grown up that some people would put meat and vegetables on their fork together! It had just never occurred to me to do that! I can enjoy them and taste them better one at a time, so I do. In a sauce, where the flavours should blend together sometimes I can't process them all like that and one gets picked on by my brain and that is all I can taste (usually salt but sometimes a herb or other spice). I only add salt to bland foods such as chips for this reason - then I am not missing out some other flavour by tasting the salt. Ma Peggy and Peggy Toes (one of Little Peggy's Aunties) have extremely fine meshes for taste - Ma Peggy couldn't drink milk from a particular supermarket for several years because she couldn't stand the flavour and Peggy Toes can detect a change in a familiar recipe in an instant, asking what has been done differently.

I don't have perfect pitch but my pitching is closer than average. A slight error in tuning is bothersome. Some CD/mp3 players have a function where the music can be slowed down or sped up and this is used at times in dance classes to match the music to the speed required for an exercise. I could always hear when this had been left on accidentally, even if just by one notch, and often nobody noticed unless I commented (when they would usually discount my tentative comment - which was actually a desperate plea to put me out of my misery! - unless they checked, when they always found it to be so!). Even when it had been set deliberately it caused me constant discomfort to hear the distortion even if slight. My fine mesh alerted me perpetually to the slight difference from normality: "This is wrong".

These are just some examples - I could probably find them for other senses, these are just those that pop to mind first.

As with my need for precision in language, these issues if verbalised can get me labelled as obnoxious, pedantic, fussy, a pain, so again I often try to mask by not raising them. Of course that makes my comments inconsistent and perhaps thus less believable and even more inviting of the judgmental labels. And the mesh or my tolerance for variation/error does change with my stress levels which means sometimes I notice less or am able to mask more.

Well, I've wandered far from the original beginnings of my musings but it's been very interesting! Some of it is just ideas or typing as I think so it might not make much sense or I might change my mind about it in future, but I'd be interested to hear your thoughts and experiences.

Do you have fine meshes or course meshes, or a variety? Do you like your mesh style? Are there other types of meshes I've not thought of beyond linguistic and sensory? 

For me, despite the extra brainspace it takes up in perceiving, understanding and interacting with the world and the anxiety caused by my mesh being different from a lot of people's, the world is tremendously beautiful through my detailed and nuanced lenses and I wouldn't want it any other way. Precision is pleasing, details are delightful and accuracy is absolutely blooming lovely.

Edited to add rambling thoughts:

Could another lens be social? What would a social fine mesh be? Narrowly defined roles, behaviour, phrases, patterns in communication. That is what autistic people try and do in order to understand non-autistic communication and "get it right". But of course there is no fine mesh and we are inevitably lacking in some way. So we wish for a fine mesh because we are fine-mesh people, but the non-autistic social world has no fine mesh.

Fine Mesh Part I: Language

I experience the world through a finer mesh than average. Perhaps that is a large part of what being autistic means to me.

Mr Peggy and I often observe that my definitions for things are narrower than his - colours, words, categories and subcategories of object. For me the window of variation before something becomes a different thing is small. It is also important to me that things are correctly identified. If the wrong (for me) word is used it is not accurate. Inaccuracy sets off an alert of "Error! This cannot exist! It is not true!" in my brain which is incredibly difficult to quiet without being resolved. The fine mesh makes this happen a lot more often.

So I tend to be very precise with language. Pedantic is a word that has been applied throughout my life - probably accurate ;) 

My need for accuracy is partly related to truth - as explained above if a "wrong" word is used it registers as untrue, untruth being close to intolerable. And of course my default outlook being black-and-white doesn't help! But also, if things are not accurate and true as expected, the chaos of the world becomes even more overwhelming. I am confused because I don't understand what people are talking about, or it takes me longer to work out. In conversation this just looks like I'm being an awkward pedant when in reality I'm working overtime to keep up. And to really top off the world's chaos, if I can't depend on one thing being true - sometimes the very foundation of my understanding of the world (language) - what can I depend on? If words and concepts can change their meaning what else can? What is stable and dependable? How can I share an understanding with someone else if we are working on different foundations? Everything swims and the constants that I function on sink beneath my feet. I mean, imagine if gravity just stopped being true, right?! It wouldn't only be my world that became topsy-turvy!

Even on a simple day to day level, imagine you visit a different part of the country and ask for a bun. In the North you'll get cake; in the South, bread. (Hey, even bread and cake can be a contentious divide - banana cake or banana bread?!) Surprising, even funny, as a one off, but imagine everything being like that. It would be completely incomprehensible, exhausting, terrifying. You'd have no idea what to expect. And knowing what to expect is hugely important to everybody, but especially to autistic people precisely for the reasons I'm talking about here: because the world is so chaotic and our base anxiety levels are so high, and because a slightly different alternative may be completely intolerable on a sensory level too (such as a slightly different texture or colour) - to be suddenly and unexpectedly faced with an intolerable experience instead of what you imagined/expected can be highly distressing.

As a side note, one way I consciously mask every day is to not correct external inaccuracies. I correct myself frequently when speaking (and when writing - it's why I use so many parentheses and go back and edit "intolerable" to "close to intolerable"), not because I am holding myself to some high standard or criticising myself, but because it is more natural than allowing a possible misunderstanding to remain. It is easier and less effort to refine for accuracy than to contain those impulses .

A lot of corrections to other people's speech or to written material do escape because I don't catch them quickly enough, and the masking doesn't always work very well because it turns out my face usually doesn't succeed in wearing the mask even if I restrain myself from comment. I come across as overly critical but I am actually spending a lot of energy on inhibiting reflexes to make everyone else more comfortable! In fact if I correct you a lot it means I feel more comfortable in your presence to mask less!! I wish it were easier for people to know that it's not personal, neither is it judgmental (people think I think they're stupid if I "correct" them, which ain't true!) and I'm not being obnoxious. I'm refiltering what they've said so that it fits through my fine mesh and I can process it better, nothing more, nothing less.

More to come on fine mesh through a sensory lens.

Good memories

I spend a lot of time talking about difficult memories, or certainly dealing with them, but today I had a lovely one. 

I was at our local farm shop for some baking ingredients (bargain ripe plums for a frangipane...) and I always take my time and let Little Peggy have a wander when we're out and about - the world is still a wonder to him and I love to see where his interest takes him, look at things from his perspective and think about what he's learning from it, but that's a post for another day!

Anyway, I digress! I found some beautiful plump juicy cherries and with great flexibility of thinking (I had not gone shopping for cherries) I went back for some after our trundle of the shop. 

The sight of those gorgeous cherries in their brown bag and then the feel of the scrunched up paper as I carried them to the till took me right back to a happy summer years ago (I don't imagine it was happy 100% of the time, but that was the emotion it evoked!).

When I bit into the first cherry later at home I was flooded with warm sunshine and memories of my sister and me having a cherry obsession and walking to buy them from the market every week, and one time sitting on the bus to Winchester eating cherries from a paper bag! The warm connected feelings of walking together spending quality time, or of somebody arriving home and declaring they had bought you cherries. And of exercising our new-found freedoms and discoveries after some difficult life circumstances. 

And it's funny, because I still like cherries and I buy them from the supermarket from time to time and think about how we used to treat ourselves and each other to them, but it was the whole experience, and particularly the texture of biting into the cherry and tasting it - so different from a supermarket cherry - that really transported me back. 

Thinking and experiencing are worlds apart and it's wonderful to have a purely positive example of that!

Unsurprising Surprise (will I ever learn?!)

I spent several days just doing nothing. By which I don't mean nothing, because that doesn't exist as an option any more, but doing the bare minimum of keeping myself and Baby Peggy fed, clean and safe. Not doing anything from my growing to do list or even able to contemplate doing any of those things. Mentally absent from life and feeling like I'd missed those days out. I can them non-days - days where I just exist.

Gradually I've started doing one or two things from the list each day because I know I have to and it helps keep the sense of overwhelm at bay. During the past couple of days when I've been doing that, I have noticed that my mood is not good. I'm not low on sleep but I feel as though I am. I am irritable, I feel low, little things bother me, sensory issues are worse, everything feels too much, I can't get my head around thinking about anything. 

Because I'm used to just carrying on and I don't get breaks any more I didn't anticipate the end of term being hugely different from term time, other than that the routine is different because I entertain a baby for 5-7 days instead of 2-4. But my body/brain seems to remember that end of term = crash time, so here we are. I just hope it gets back on board in time for me to be present and enjoy our holiday next week.

Note to self: assumptions are not useful, changes of routine are always unsettling, perhaps work takes more out of you than you realise. The interplay between mood/energy levels and life factors such as routine, change, stresses and stressor, hormones, social interactions and countless other factors is complex. I can look back in retrospect and think "I should have seen that coming", but I didn't, or not with this intensity for this long. What I can do now is notice, try and be kind to myself and allow recovery as much as possible, and learn for next time. 

365 Days

Did you know we had a heatwave at exactly this time last year too?!

Sorry, not an autism or mental health or sensory-focused post, just a lil reflective one.

I remember because I was in labour at this very moment. I remember being uncomfortably warm as I waited for my induction, but for the next 12-17 hours being more preoccupied with other things! And then being slightly worried our 9-hour-old baby would either melt or roast on the car journey home as our air conditioning wasn't working. He survived, and we survived the very sweaty days of closeness that followed.

And we all survived the following year, because here I am writing about it as the huge child snoozes blissfully unaware of any unusual significance of the occasion of his afternoon nap on 16th July. 

We more than survived. Our lives are so much richer for having Baby Peggy in them. We learn from him every day and laugh with him every day.

I am proud of us. There are parts I am not proud of - moments, patterns, aspects I could, would and should change. And there are many things I accept or am learning to accept that might not be ideal but are also not the end of the world. Telling the difference can be hard.

But my overarching awareness today is gratitude and wonder. To be here today with our lives as they are right now - a whole year of this boy - feels miraculous.

I am thankful for the joy he brings every day.

I am thankful for the snuggles.

I am thankful for the giggles.

I am thankful for the relationship he has with me and Mr Peggy.

I am thankful for his growing independence.

I am thankful that he is so settled and well cared for in his childcare setting and that he is developing his own friendships there and experiencing such a wide range of opportunities that he doesn't get at home.

I am thankful that he sleeps much better at night now.

I am thankful that he has such a loving extended family.

I am thankful for all of the friends, family and professionals who support us.

I am thankful for the time I get to spend with him watching him learn about the world and himself.

I am thankful for an infinite number of things! That's not to say it isn't incredibly hard at times. It absolutely is. There are days when I am unrecognisably far from the parent I would like to be and where I feel despairing that he has a parent like me. On those days it's upsetting that he trusts and loves me because he really shouldn't. But mostly I can see a balanced view - undoubtedly imperfect, but not wholly terrible. Sometimes we do just fine!

And I'm just thankful that I've had 365 days to try at it and 365 days of memories to treasure.

Happy First Birthday little one ❤️

Back-up Voice: Non-verbal Communication

Another one I thought I'd written about but can't track down so maybe I've only mentioned in passing.

When you think of non-verbal communication you probably think of gesture, body language, eye contact and so on. I'm not here to talk about those, though perhaps I could do one day. I want to talk about what we do instead of talking, not what we do as well as talking.

Generally I have low support needs and I live a largely independent life. I tend to think that most people wouldn't know I was autistic unless I told them or I spend a long time with them (who knows whether I'm right or wrong about this of course...). Or, of course, if they meet me when I'm stressed, distressed or overwhelmed.

Suddenly I am recategorised in the onlooker's mind. I act unusually. They find me unpredictable. They don't know whether I may be a danger to them, or to the environment or myself. And here is the big problem: I can't talk.

So they don't get an answer to their questions, and they don't even know whether I'm hearing them or dissociating (for reference, I don't dissociate, so I am most likely to be hearing you). They ask more and more questions that I can't respond to; they start making ultimatums (ultimati?! ultimatae?!) or trying to get me to do things I can't do or that won't help. I get more distressed, it takes longer to deescalate.

The thing is, once I start to calm down, which I can often do well by myself with time and space, I begin to have access to communication again. When I'm in high distress I can't communicate at all, but as it comes down (or if I can catch it on the way up) things start to return. The trouble is, speech is often one of the last.

So alternative methods of communication are key. I haven't cracked it completely (if there is a finished point, which I highly doubt!) but I've learnt a few tricks that I thought I'd share.

One of the first things I'm able to do is nod or shake my head in response to a yes/no question. This is really useful because it tells the other person I am hearing them. They immediately feel calmer because a connection has been established.

Once my body begins to relax I am often then able to sign. Because of my work I know a little basic Makaton and fingerspelling. Within my work setting I have managed to convey the person they could fetch to help me (did take a while for them to realise I was signing, but they did and then worked in out from the initials!), but it does have its limits - in the general public not everybody knows any signing. Or in a situation like I found myself in last week, they may not be able to see! I was behind a door and because my eyes were closed I didn't know that they only had space to open it a crack so they weren't even seeing my increasingly vehement "quiet time" signs that I thought should be understandable to Joe Public...

As I deescalated further I eventually thought of typing. Once calm enough to open my eyes I wrote a simple message on my phone: "I'm autistic, I just need some quiet time." Credit to the staff at the restaurant, they were incredibly kind and respectful throughout the incident and the evening, and at this they straight away told me that they would close the toilets and come back and check on me in five minutes, which they did, by which time I was up and ready to leave and able to thank them quietly (they had only appeared once I was in recovery phase anyway - the whole process usually takes a lot longer).

In the past I have also used pen and paper to communicate in this way. I think it is slightly more difficult than typing but is another tool in the box.

And of course my sunflower lanyard, if I am wearing it, can explain to the onlooker a little about me ie. I am autistic and might just need some space. It also has details of how to support me in distress if I showed them the right card.

Also to note, sometimes as my speech returns it comes very quietly. At times I can mouth the word with a sign or a whisper will come out. So if you pay close attention you might get some words before normal volume is reached.

I'd be interested to hear from other people who are nonspeaking or occasionally nonspeaking, have situational mutism etc - what are you back-up voices? What tools help you and have you found anything especially reliable for interacting with members of the general public?

Tired

I don't want to fight any more, I'm exhausted.

The landscape around me feels bleak despite the warm (finally not wriggling) bundle of comfort in my arms.

But there is no way out. 

My options are to fight or to abandon all that I love in this world.*

Well, it's a little more complicated than that - I could live a half life that involves both fighting within myself and neglecting my husband, son and pupils/colleagues, as well as not enjoying any of those relationships fully. To be fair, even giving in and letting the darkness win involves fighting anyway. Or I could try and delay one by doing the other and just prolong the anguish. But ultimately it boils down to resigning myself to what my head says or fighting back against it.

Abandoning my family again can't be an option. So if I can't fight for my own benefit at the moment I need to constantly remind myself of the implications of giving in. It's confusing because making the "right" choices feels more like giving in, and doing the "wrong" thing feels like what I should be doing. I need persistent reminders that not listening to the darkness is not the easy route of giving in but the correct, responsible, hard grind of making sure that I can fully perform and enjoy my various roles in life. None of the Peggies deserve a half-me.

When nearly everything inside you fills you with shame and disgust at your "right" actions it certainly feels like a bleak battle. But I know it gets better. I know that my brain will eventually see the "right" way round again - even though the very thought of that switch fills me with alarm and horror right now. I have been round this loop enough times to eventually try and trust what doesn't feel true: the words, warnings and examples of those around me remain the same as my mindset changes, and I have to trust that they are truth and not poison.

It's relentless and it's exhausting; please bear with me.

These two Peggies are my world. Worth fighting for.

ETA: After some much-needed quality time with my trusty Rainbow Peggy I am feeling strengthened in resolve and hope. Still exhausted and still back to front but resolved to pursue the path I am told is right.

* Please note - before you all start panicking, I am not suicidal and have no intention of leaving the world; by abandoning I mean allowing my life to go down a path where everything becomes skewed, where I am not able to be there physically, mentally and/or emotionally for those I love and for myself, and where destruction follows me bringing pain and brokenness to the people I care about.