Hatty Christmas!

🎵With your hats and my hats and my hats and your hats the more we get together the hattier we'll be🎵

Attention, all neurotypes: This is your friendly neighbourhood reminder that it's OK and a good idea to do Christmas however it works best for you. Introvert, extrovert, lonely, content, anxious, peaceful, grieving, joyful, scared, however you're feeling.

This song has been going round and round and round and round in my head since it invented itself when Lil' Peggy brought me our hats for a walk yesterday. In case you didn't sing it in your head or don't know the original song, it is a truer and more inclusive version of the song "For my friends are your friends and your friends are my friends. The more we get together the happier we'll be"

Of course the original song is a lovely sentiment and probably designed to promote inclusion. And it's a pleasing rolling tune that's easy to pick up, fun to sing and sticks on your head. I like it. But it's always irked me that it's just not true! For me at least!

Other people's friends aren't always my friends. Although we may share friends or their friends may become my friends, occasionally we really don't get on. Certainly I may not have met them yet, in which case they absolutely aren't my friends even if they may be one day.

And I have a definite social battery, so "the more we get together the happier we'll be" just ain't it! I do actually like people and need to enjoy spending time with them, a discovery I was pleased to make a few years ago, but the quantity and frequency of my socialising needs to be a lot less than for many others. I need down time to recharge alone and space for regulating activities. More does not infinitely equal happier!

But with my hats and your hats, we will definitely be more hatty the more we're together (if hattiness = nHATS x tHATS, where n=number and t=time in presence of).

Some great adaptations I've made to Christmas the past couple of years have been to allow myself time out where needed (this builds itself in naturally with a small breastfed child, but I had planned for it before the child came along too, although I didn't get a chance to implement because of covid), and to only spend a few days at a time with people if going away. We do go and stay with people a few times a year either as a family or me and the smol, but I now know my limits and tend to keep it to about three days at a time because I know that this is about my capacity before the balance between benefit and difficulty starts to tip.

Knowing what is going to happen and what to expect helps me a lot and my Peggies-in-law are amazing at this - before we go to stay with them they send a suggested itinerary and meal plan. This is fantastic because it means we can make any necessary changes or flag up things they need to be aware of (Little Peggy can't have cow's milk so when buying things like pies from farm shops they need checking) and I know what is happening and what is available. I can also look at menus in advance so I'm not under decision pressure at the time, and I can decide how I spend my time depending on what will be happening (eg. if I know we'll be out all afternoon and evening I might spend more time in the morning away from the family to minimise overload). Even little things like deciding what to wear (inside/outside/formality of occasion) are helped by understanding what will happen when. It just helps my brain relax because I am often thinking about what is coming up in my day or week so I can be prepared for it, and if I don't know then that thought keeps buzzing round taking up brainspace because it's unresolved.

So. If you know something that will help you at Christmas (or any other time!), to quote (slightly out of context) a very wise Peggy who has helped me a lot "it's OK to say it."

Note: saying it explicitly may be more uncomfortable but may in the long run be more helpful because then others are aware and can help to make sure the adjustments that help you cope are kept to, or can show more understanding of any struggles or make different accommodations if they are not kept to.

And last but definitely not least, if you have been brave enough to say it and others have disregarded or forgotten about what you have said, that DOES NOT automatically mean you were wrong for saying it. It does not mean you shouldn't have said it, or that you are a bad person or that you don't deserve whatever adjustment you were hoping to make (or are still going to make, but are now probably feeling guilty about making). 

Sometimes things need saying a few times. Sometimes they need explaining a different way. Sometimes there's a compromise that will still meet your needs. Sometimes people will not understand. Sometimes understanding grows over time.

Stating that doing something differently would help you is not a character flaw or a crime! It might even help others too - inclusivity often benefits everyone not just the person it's "designed for." Or it might make others glad that they know they are maximising your enjoyment and wellbeing by accommodating your needs or preferences.

I hope you have whatever kind of Christmas time you need this year.

Echolalia

So my previous post has made me finally write this one! I've been mulling over another of those "autism comorbidities*" for a few weeks - one that I've not thought about much before: echolalia.

Now I found this great article that pretty much says everything I wanted to say about it, so I would suggest you read that instead.

But if you can't be bothered I will summarise:

Echolalia is basically repeating words or phrases, either immediately or later. It used to be described as "meaninglessly" or "pointlessly" but this is SO WRONG. People do it for many reasons: to help process what they've heard, to communicate a response, to perform socially (ie. they know a response is required but don't know what), because it's fun or stimmy, to communicate a new message, to practise speech sounds, to make links and categorise new information (ok, that's similar to the first one I said - processing).

Actually it's not just an "autism" thing - people quoting films in everyday conversations are technically doing it - but autistic people can tend to do it a lot more, or a higher percentage of their communication might consist of borrowed phrases. In fact it's amazing how much you can say with recycled dialogue and some communicators are ingenious at getting a message across either what they have. I always remember Joanna Grace telling of a lad who said everything he needed to through quotes from Thomas the Tank Engine: "But wait, we've left the refreshment lady behind!" was the way he reminded the teachers of a quiet member of the class who nearly got left behind one day!

I do it more than I had realised - like with the surprising item in the bagging area title to my previous post. I think I do it mostly for fun - it is a little like word play to me - and also because my brain makes links, connections and patterns. It likes to join things together looking for patterns, so often if I say something that is also in a book or song I will extend my sentence by finishing the quote, for example Little Peggy might be wandering off up the road as he does, and I will say "where are you going?" but then I finish with "to, little brown mouse" from the Gruffalo. Sometimes I carry on further through the story! If I say "here I am" I usually follow it up with "send me", a quote from Isaiah in the Bible that I've heard a few talks on.

Maybe it's partly completeness for me. If my brain has made the link to something else it wants to complete that thing or at least acknowledge the link in order to let go of it and move on. Other times it's playful. And perhaps if I am not in the mood to communicate directly it is easier to use someone else's words as they feel less personal or vulnerable. At any rate I think it's less effort and more fun to use preloved phrases - I don't have to put words together, I can be a bit artistic, and in a weird way I know it's "right" because it's already been said by someone else, so I can't get it wrong and be weird. Which of course is nonsense because it can make you sound a lot more weird! And writing that I realise I have a whole lot of words and phrases that I have pilfered from many many real life people over the years - some I just like, but I think the theory may be "they are accepted and respected; if I use their words I will be too - I will belong and won't get it wrong.

So yes, read the article and get interested - the more I think about it the more fascinated I get!

*What a terrible term! Basically just a Thing, that quite often coincides with being autistic, but can happen without being autistic and not all autistic people do it.

Surprising item in the bagging area! And what to do about it

What a great opportunity to practise coping skills...

A surprise day. I'll refrain from my oft-used phrase of "it's all wrong" because it's not wrong that I'm at home looking after my poorly child. 

But it does raise a number of issues of emotion, thought, logistics and executive function. And the "wrong" feeling autistic people get when things aren't how they're supposed to be.

The day doesn't have a plan. Well it did, but I'll get to that later. How do we pass an unexpected day? Home days don't usually start this early - we got up and ready as though it were a work day, because it was supposed to be. What do I do with the time until the day starts? And what do we do after that - we have no activities planned. What is he well enough for? Can I take him out if the Calpol perks him up eventually or is it too risky in case he's carrying scarlet fever? I have the wrong food - do I eat work food at home or do I waste the work food? I'm wearing work clothes - do I stay in them because it's Wednesday or get changed because I'm at home?

What do we do tomorrow if he's still too ill to go to childcare? I've taken a dependent care leave day today but they are very limited and only granted at the discretion of my employer - not an entitlement. How can I judge by 3pm today how he is going to be tomorrow?! Will he be well enough to stay with Daddy and how bad would I feel about Mr Peggy having to rearrange his day?

And then the emotions: frustration because I know the staffing in our class has been terrible this week so I was looking forward to going in and being a real help. Instead I'm adding to the problem (bit of guilt too, although im trying not to guilt myself). And more frustration and disappointment because I was super pleased with the fact that I hadn't needed any time off this half term. I thought I had finally made it through a complete half term but now we've fallen at the last hurdle. I'm glad it wasn't a sick day for me because at least I still haven't needed time off sick, but the pleasing completeness and sense of achievement and things being "back to normal" and feeling reliable are gone.

And then the worry for the future - what if I'm just not reliable any more? What if I need too much time off - I'm already partying with HR. What if Little Peggy is more ill another time and I should have saved the time for then?

He's finally perked up enough to leave my knee for two minutes, twice (he is back on again now), so of course I am questioning whether I really needed to stay home with him (he was up most of the night screaming for significant portions of it, has a temperature and has been in contact with scarlet fever). But that's the decision Mr Peggy and I made so really it doesn't matter whether it was right or wrong - that's just how it is now.

So now I need to work out what the day is. How do I deal with the discombobulation, the emotions and the thoughts? 

Number one: I don't use any harmful coping strategies.

Number two: I take one step at a time. Right now what needs to happen?

Number three: I radically accept not having a plan. The day will depend on what the little one needs and that might change. Not having a plan is better than needing to unhave a plan! I didn't start the day with plans for home so there's nothing I need to achieve other than looking after him (and myself)

Number four: I take a compassionate approach. I listen to what I am thinking and feeling - it's ok that those thoughts and feelings are there. I go easy on myself and remind myself I don't need to "fix" all this right now. One step at a time is better. Time, space, moving away from black and whites, gently feel your way and remind yourself you will get through it and the world is not ending. Process what's happening eg by writing (this!) and think about what will genuinely be useful to you.

Number five: start thinking about options. Not a "plan" because I'll need to be flexible, but possibilities. Maybe we'll have an opportunity to do the Christmas cards together that I haven't found time for yet. Maybe I can finish parcelling up the parcels. Maybe we can still collect the marketplace presents I was going to get after school, as a "get out of the house without contaminating anyone or freezing the poorly child" option. Maybe we'll just be bundled up on the sofa with the TV on. None of these are binding but they might help me decide what to do with the time rather than getting stuck and stagnating and all feeling even worse.

Number six: what can I do for me and my body, brain and nervous system to make things better? Just because it's a difficult circumstance and I've made things more difficult for others doesnt mean it will help anybody if I feel terrible all day (in my head, it's not what's meant to happen so it's Bad, and if I try and feel less bad about it that makes me Badder, or something...). Easing the "suffering" doesn't negate the difficulty for myself or others. Right now I can't make it any better for the others but if I ease my own system I am in a better place to help when I am back, and to stop any negative spiral in myself. I will care for poorly one better if I am in a better place. So I can use my CFT resources of soothing rhythm breathing, safe place and compassionate companion. I can write to process. I can make sure we do get outside at some point, even if it's just for five minutes. I can parcel the parcels to feel I've done something. Maybe I might buy myself something - there's something I've been deliberating on for a few weeks. Or I might read a bit of a book or listen to some music. At any rate I'll look for a bit of joy. 

The boy is curled up sleeping on me (probably the only way he'll rest today - hence no nook or jigsaws!). He's definitely not OK, naps at 10am are unheard of, but the day will be. The world will keep on turning and tomorrow will be a new day; we'll deal with it when it comes!

Was it a Good Idea? Dialectics again

In a similar vein to my recent post Difficult ≠ Disaster, I have been practising challenging my tendency to black and white thinking. 

Last weekend I took part in a dance performance, the first I have done in nearly four years. It involved lots of weekend rehearsals, time away from Lil' Peggy and Mr Peggy and one extremely long and stressful day for all of us! I deliberated for a long time before committing in August because I couldn't decide whether it would be a Good Idea or a Bad Idea to participate.

It's a particularly autistic thinking style although obviously only too familiar to most non-autistic people as well. We just seem to lean especially towards categorising things into two extremes: Good or bad, possible or impossible, nice or horrible, right or wrong.

For me, it makes the world easier to navigate: if I know what is what then I know what to expect, how to respond correctly to things, and it's clear what is safe, good and acceptable and what needs to be avoided. Grey areas are confusing and require a lot of processing, for which I don't always have capacity (or which takes away from my capacity for other things).

So it's a logical, sensible thing for my brain to do, to economise on power by simplifying things and ultimately to keep me "safe" by making sure I don't run into trouble of any kind (anything from physical accidents to social rejection).

The problem is, there are a couple of side effects.

• Things don't just fit into those categories. Most things in the world are a mixture of positive and negative, and there are situations where rules change and need to be flexible. Things can fit in more than one category or switch categories depending on context. 
• It can result in the "safe" option shrinking and shrinking to make sure I'm really certain it's safe.
• You can miss out on or eliminate things that would bring some benefit because they also have negative aspects.
• You can appear judgmental or critical (or overly liberal!) if you draw your lines in the wrong places. Which in itself is an example of what I'm talking about! There usually isn't a "right" or "wrong" place to draw the line - different people draw their metaphorical lines in different places!

So how to avoid these pitfalls if you are a naturally black-and-white thinker? Firstly just realising that you see and interpret the world through that lens can help. Once you realise and notice yourself doing it (as I did above!) you can start to enquire as to whether that's the only way it can be seen or whether there might be more options.

For myself, I think I've found three alternatives to a black and white view:

1. Perhaps most obviously but perhaps most difficult for a habitually and naturally binary thinker, is to see a continuum. Although there is an extreme at each end, states exist in between. To be honest, I think as well as being hard to do this one may not be the most helpful because even a continuum suggests the relationship between the two extremes is a linear scale - more to less, good to bad - which it may not always be (it may vary dependent on context, for example).

2. Get dialectical about it: both of these things can be true! I have waxed lyrical about this phrase before so I'll keep it brief, but if you can get your binary head around entertaining the coexistence of opposing states it will truly change your internal landscape (in a good way).

3. If that's a step too far, sometimes a manageable first step for me in shifting my thinking or perception is just to subtly relabel my categories. Instead of possible and impossible, I might choose likely and unlikely or easy and difficult. Bad and good might become upsetting and enjoyable. The lines soften, possibilities other than the extremes begin to exist.

I did the project and of course, it wasn't a Good Idea or a Bad Idea. I kept having moments where I thought I'd definitely done the Wrong Thing by doing it, or the Right Thing. When really, I had just done A Thing. There were positives and negatives. Moments where I remembered and relished in my love of dance and was so glad I hadn't let myself move further and further from that world, and moments where I wished so hard that I didn't have to put my small person through so much upset and spend so many of my resources and down time being sociable at the weekend when I am usually recharging. Swings and roundabouts. It doesn't have to be one or the other.

I'm glad I did it, and I'm glad it's over.

I love the hat!

I'm so proud of this hat! 

I decided to make rather than buy because I enjoy knitting and I haven't knitted anything for ages, and I'm trying to make sure I do some activities just for me that I enjoy when I can. So I'm proud I prioritised me rather than just buying. It also feels more personal and special than any old hat and more sustainable than buying (though that might just be my simple perception!).

I'm also proud that I taught myself a new skill. I chose a pattern that I liked but it used a technique I've never learnt before that looks complicated. So instead of picking something else I remembered that I like learning so I decided to give it a go. And then I taught myself! Usually I would think that I need somebody to teach me because it's too complicated for me to figure out and easier to learn in person. But I had a look round the Internet and worked out how to cable all by myself.

I'm proud that I did it well. I made quite a few mistakes along the way but for each of them I managed to figure out where I had gone wrong and what I had done and how to fix it. Previously I've always had someone else around more experienced than me who can fix mistakes or help me fix them, but I found out if I think about it I can work it out myself. I'm a better knitter than I thought, and than I was when I started the project. Of course there was also plenty of whingeing and panicking that Mr Peggy tolerated very well!

And finally, I'm proud it's not perfect. It's good, but it's not perfect - it's not 100% even on every row and stitch, and I didn't reverse the sewing for the turnup when I was sewing it up (my sewing up isn't the neatest either!). So I'm proud that I can take ownership of it and say "Yes, I made this. Yes, it's not perfect. But it's also good, and I like it." I don't have to be perfect and not everything I do has to be perfect. It's a cute, cosy hat, I made it, I taught myself a skill, I did some problem-solving and puzzling and I love the end product, imperfections and all. Plus, it means my one-of-a-kind won't be mistaken for a production line replica ;)

Who cares whether the toddler actually likes it 🤷‍♀️🤣 

(He pulls it straight off, as Mummy helpfully made it plenty big enough for the ever-growing giant. My friend is going to fleece line it for me so we'll see whether that makes a difference.)

Lost in a helicopter (sensory-being/object mindfulness)

Another day, another sensory-being mindful walk. I don't get these so often now - my sensory-being* is usually shared, which is wonderful in its own way - so being given nearly half an hour to myself with the instruction/agreement to use it for a mindful wander was a relished treat.

And the fact that I could take up that opportunity in autumn is not taken for granted. My brain was in a place where I could lose myself in the moment where often I tend to either become overwhelmed because of associations and memories, or to avoid or dissociate for fear of that happening.

So anyway, off I toddled on my mindful wander. My feet found a spiky floor that they enjoyed feeling through my shoes, and then some benches that are pleasant to stand on. However my attention wasn't drawn after that by the Wander Path (oh pants, it looks like I still haven't written a post about that to link to!) like it often is - most times some sight or texture will invite me in to linger but none did. I didn't push it, just wandered on, waiting to see. It was the scent of the fir trees in the end that called me, but what it called me to was a helicopter - the kind that you used to spin in the wind as a child; sycamore seeds.

And so I was lost to the world for a good five or ten minutes, first feeling the flat sides between my fingers - still and moving - the veins of the seed pod making gentle ridges beneath my skin. Inspecting it closely, drawn into the visual pattern, then turning it sideways and seeing the pale, smooth line it made against the backdrop of fallen leaves on the path below, feeling that line between my thumb and index finger, smooth yet sharp, curving round infinitely. The bump of the seed at the end in contrast. Then deeply breathing in to see whether it had a scent of its own: not the sniff you do when you think you want to smell something, or you want to demonstrate that you are smelling, but the deep slow inhale through the nose that allows your sensory receptors to really do their job to the full. Helicopters have a scent. Then I have to say I was thinking about as many senses as possible and did have to find out if it had a taste too, so I did lick the helicopter. I felt the patterns from earlier on my tongue. I became more deeply acquainted with the helicopter, understanding more of its being with every new aspect I experienced and the longer I spent on each. I went back to smelling, and one side smelt stronger than the other. The first side smelt stronger after I licked it - maybe one side smelt stronger because I had licked it more? It felt different between my fingers from when it was dry. I held it up to the breeze, watched it spin to the ground and it was gone. My moment finished, it passed on to its own next moment; the fleeting crossing of our paths stretched out by my curiosity and a suspended moment in time.

*sensory-being explained here by Jo Grace of The Sensory Projects, where I first encountered the concept. Or search my previous posts for my own witterings on the subject and how it overlaps with mindfulness - you can start here.

Difficult ≠ Disaster

Today is a difficult day. Its brings memories. It brings emotional states that are stored in my body and can be triggered by the tiniest of events or environmental factors. It brings many thoughts of what life "should" be like and isn't, and I have to try and remember/believe that the "should" is the wrong way round. 

It's not only today: throughout most of September I deal with some level of the above, but today is one of the worst days. This year I'm primed with the exhaustion of the return to work in a very busy class after the summer holidays and a couple of weeks of teething/coldy-interrupted-toddler-sleep on top of the lurking reminders of the past. The week has been exhausting, throwing a marvellous array of extra missiles my way: busy weekend, changes to plans, being unwell myself, a particularly difficult and distressing night of very little sleep at all, you get the idea. 

Before my work week even began I was treated to a new and wonderful adventure of dissociative experience. By which I mean not wonderful and not a treat. Thankfully not bad in the grand scheme of dissociation options but enough to unsettle things even more. In some ways it feels as though the years in-between never happened. It's a pretty clear clue that my brain is overtaxed and not happy about it anyway.

I pushed through two days of work, questioning all the time whether I should be there: am I doing a good enough job, do I still have enough capacity to do a good enough job at home as well, am I making things worse by being at work, am I making them better, what outweighs what - where is the balance hanging? 

I've tried to do everything right - I've kept talking about it, to professionals, to Mr Peggy, to colleagues, trying to keep everyone aware and in the loop. No surprises, no assuming people will somehow know by osmosis, no "you should have told us". I've put into practise the tips I've been given: breathing, grounding, verbalising, writing, asking for help. And finally, calling it. Existing conspicuously enough to say enough is enough. I need to stop now before a real crisis.

Now I have to sit with the fact that I've done that. And that I'll never know whether I really needed to or if I was just making a fuss and being lazy or self-centred or greedy. That I have made the day more difficult for others by making it more bearable for myself and my family. I have to sit with the thought "what if this is the beginning of a slippery slope?" and the fear that I will become unreliable again because of my anxiety/distress levels. 

Not just accepting but celebrating. He has my back.

But in the midst of all this there is plenty to be thankful for and plenty that is positive. The amazing Mr Peggy who sent the message above this morning and who constantly picks up the slack when I'm struggling (and all the time 🤣), reminds me to look after myself and reassures me that it's OK to. Lil' Peggy who no matter how many times he drives us mad with his hurricane exploration of the world and its possibilities can still soothe me with a momentary snuggle or smile. Colleagues and friends who understand and who affirm that I'm doing the right thing. The fact that I am out and about living my life, being able to be at work in order to have the dilemma at all. Recovery from mental health problems doesn't mean they go away and is by no means linear. I am certainly not at the best place I've been in the past few years, but neither am I at the worst. 

Today is a difficult day but not a disaster. I've listened to myself, I've made choices that I think were right for me. I have been gentle with myself and am sitting with that fact. Right now I am within my window of tolerance and think I may well be able to stay there, which for this day is a best possible outcome.

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.

All change!

So. Much. Change. When you have a baby!

Not surprising, yet incessantly surprising. The trouble for poor Baby Peggy is that it takes me a long time to adjust to change, so try as I might to keep up with and anticipate his ever-developing needs, he often ends up in slightly-too-small clothes for a little while until I get my head round swapping to the new size.

Put away one size of clothes, get out the next. Out of the baby bath into the big bath; get a bath mat so he doesn't repeatedly drown himself by trying to move. Out of the bedside crib into the cot. Lower the cot base because he can sit himself up (which he did at 4am!). Baby gym away to make space for crawling. Get a toothbrush and toothpaste for the teeny gnashers. Plan everything he needs for going to the childminder's. Solid food. Solid food twice a day. Solid food thrice a day (good word, thrice). Favourite toy changes every week or two - keep up if you want to keep the peace.  Move changing mat to floor to avoid wild launching of self. Acquire shoes - baby suddenly wants to stand up All The Time and it is often rainy outside.

The "routine" is constantly evolving - no sooner than I get used to the fact that the wake window is two hours than it extends by half an hour. I reckon it takes me about two weeks to adjust and it changes after three or four weeks! We settle into a pattern for about three days, and because my brain loves a pattern it is constantly searching for one, but once it's found one we change to a different one! Needing less milk because we eat more, then needing more for a growth spurt, then back to needing less again, nursing strike, ravenous after nursing strike, etc etc!

Trying to guess whether each change is permanent or temporary. So much unknown and unpredictable. It's exhausting and probably contributes to my overwhelm because the world can feel so chaotic. But I wouldn't trade it for anything, even my sanity which is a little intermittent! This little unpredictability-menace is the best thing that could have happened to me right now and I love him to pieces. Even when he's a constantly-changing contrary Mary. 

Scrumptious unpredictability-menace loves his guinea pig friends now 🥰

Where's the Feeling?

For somebody who is quite sensory-aware, naturally mindful and pays attention to what their body is telling them, I am remarkably useless when somebody asks "what did it feel like in your body?"

My new therapist ask this question a lot - it is an important part of the EMDR we will be doing - and I find it really difficult to answer! I can be bad at identifying emotions, though I am improving at times, but sometimes I'm even worse at this, which surprises me.

Is it because I don't notice it? Is it because I can't identify it? Is it because I can't remember it afterwards? Is it because I find it difficult to communicate it verbally?

During my difficult week I have been trying to pay good attention to where and how I feel different emotions and responses in my body, particularly the past couple of days since I saw her.

With some emotions it has definitely been a case of not thinking to pay attention at the time - when the old amygdala's partying I tend not to be paying attention to my precise inner sensations. At other times I have been able to notice some clues, for example my shoulders being tense and raised up, a sick feeling in my stomach (usually worry), fidgety hands or hands that want to hold something, a mouth that wants to smile.

Emotions have even been mapped in the body with thermal imaging- picture from here.

But that's pretty much all - I spent a good twenty minutes yesterday thinking "I feel calm, content, relaxed and happy, what does it feel like?" and all I could come up with was slightly smiley and it's easy to move (if that even counts!!). Does my body just not feel feelings in a very physical way or am I spectacularly bad at figuring it out?! 

Any hints or tips or do you have the same experience?

A quick Internet search for "anger in my body" or "where do I feel things in my body" bring up a variety of resources to highlight body cues for emotions - I'm going to keep paying attention and see if I can work out whether it's my awareness or my body that is making it more tricky to figure out - or maybe both. And I'll be writing it down to make sure we don't come a cropper on the "difficult to communicate it verbally" thing. Interoception differences and alexithymia are both known to correlate with autistic neurology so I probably shouldn't be surprised by this whole business!

Skillz and Tooolz

Skills I have used this week, in no particular order. Some of them are old faithfuls, some are new trials or discoveries, and some I have intentionally resurrected as the usefulness of going back to things that have helped in the past has been highlighted to me. Sadly a few are not currently available to me, like ballet, massage, and probably others. There are undoubtedly some I've missed, but a good few here to give you some ideas. If you want more information on any of them just give me a shout in the comments or by direct message.

Trying different intense "push" movements instead of destructive physical actions

Writing (CBT and blogging and general brain dumping)

Going in my nook

Old skills such as emailing updates before sessions to help me talk or make sure I stick to my plans

Talking to people and verbalising my head contents

Not giving space to thoughts/urges that are untrue and unhelpful, even if they feel like they are true and helpful

Reminding myself of why those things aren't true and reasons why I do life differently now

Allowing amygdala to party when it really needs to, but not in a destructive way

Sensory walks - touching and smelling the conifer leaves, tiptoeing along the kerb etc

Tai chi

Paying attention to what my body is telling me and how it tells me that (eg. I needed to wear my noise-cancelling headphones the whole time I was in town, not just in noisy shops. I was holding the ends of my sleeves and putting my Tangle in my mouth - seeking tactile and proprioceptive input. My stomach had a sicky feeling of anxiety. I wanted my hood up at the beginning of my sensory walk - wanting to be enclosed and reduce sensory input. My shoulders were up high and tense.)

Achieving small tasks such as cooking a meal, booking an appointment or sweeping the kitchen floor

Stretching/moving my body

Sleeping

Noticing how many things I have actually coped with and why things are difficult right now

Putting on upbeat music

Soothing rhythm breathing

Safe/calm/happy place visualisation (! Bet you never thought you'd hear me say that!) and tapping

Playing games on my phone

Jigsaw puzzle

Colouring

Reading

Playing mindfully with Baby Peggy's toys (and Baby Peggy of course!)

Cuddles with Baby Peggy

Message a friend

Fidget tools eg. Tangle

Amygdala Party!

I need to write but I don't know what I want to write. It's been a rocky week. The old amygdala's been partying hard, as they say. In fact, we've decided to call meltdowns, shutdowns and panic attacks amygdala parties in the Peggy household. Sounds way more fun, don't you think? 

There has been so much party time that it's beginning to feel like going back a couple of years to when I was pretty much constantly in overwhelm, bouncing from one threat response to another without time to return to base levels in between. I'm having to focus most of my attention on trying to stay regulated.

It's scary because I remember that as a very nasty place that I don't want to spend any more time in. I was trying to cope in positive ways but regularly resorting to various harmful behaviours because my other strategies didn't give me enough relief or quickly enough.

Things have changed since then. Throughout the past week I would have had probably at least one amygdala party a day, and several on some days, but there have only been a couple altogether. A few close calls as well, but I have noticed several times "I coped with that - that would have had me in meltdown in the past." I am better at using more skills more often and for longer - coping with more things before becoming overwhelmed.

Picture from https://iveronicawalsh.wordpress.com/2014/04/11/a-cbt-look-at-fight-or-flight-when-the-tail-wags-the-dog/

But the moments are coming thick and fast, and the number of times where the threat system completely takes over is much higher than it has been for a long time, and it is active large portions of the time. It scares me because I know really that I don't want to rely on old habits again, no matter how much it feels like they would help or that I should go back to them (and I am pleased to say that I have just about managed so far). It feels like things are going backwards. And then I'm supposed to be starting therapy - what if that makes it worse, or what if I can't because I'm too unsettled? I'm going back to work - I don't want to be back to "wobbles at work," that is too close to how things used to be. But I might be more stressed while I make the adjustment to that big change too.

But perhaps this is just a rough patch - being here is right now but that doesn't mean it's forever. I am better at using skills. I am better at communicating. I am better at recognising when I need to step back and reassess. I may feel the same but I haven't yet resorted to the same behaviours during this difficult week. It feels worse than it is because in addition to the stress/distress I have the fear from the memory of how awful that time was.

Take a nice picture of a budderfly
instead of doing something destructive

I will always have overwhelm and threat responses to deal with; though some will hopefully reduce over time some are due to the way my brain functions not being quite compatible with the way our world is set up. There will be times in life where there is more upheaval or more upset for one reason or another. Those times don't have to put me in the same place. It can seem almost impossible or even wrong to go a different way. Hopefully I will get used to it and it will become easier.

Picture from https://m.facebook.com/brainandbehaviorclinic/photos/a.2406050409623312/2406674099560943/?type=3

ETA: Baby Peggy has obligingly had a mahoosive nap two days in a row and slept better the night in between, so my brain has had some good down time. I've been working hard at tending to it so am feeling a lot better and more positive. Still fragile, but more restored and more certain that this is temporary and manageable. I remind myself that if I become overwhelmed again it isn't because my coping strategies didn't work, it's because I need to use them again.

Kind Musings

Tears on my face, cold air playing with my hair, bright sun through the new leaves and my fingers on the solid truth of the tree bark, I embrace the sadness and overwhelm. I've done this a hundred times before. I will survive it again.

It comes gently when I invite it. Painfully but gently, not like the destructive distress of pushed-away pain. It hurts, this caring, and I fear it taking over - that's why I usually run from it - but it heals too, if I allow it.

Held by the deep strength of nature, I am always cared for.

It makes me vulnerable - now and probably for the next few days - I don't know how many times I can do it but maybe I don't need to worry about that. Worry about right now, and right now I have survived it.

I try not to push it away before it's finished, and to let it come and go as I follow where my attention leads through the walk with its plants, sculptures and creatures.

It has taken four sessions with three separate people to finally bring me here today - all of whom have highlighted the same theme in their own way - and it reminds me of the many others who would be proud of me today. That hurts too, but it makes me happy in a sad kind of way. I know I'm on the right track and that makes all their time, effort and care worthwhile, which is the best I can do to honour what they have given me.

I love the oak sculpture (by Tom Handley) which reads "memory that grows into a shape the tree always knew as a seed" - see below for credit and a link to Gareth Evans' poem Hold Everything Dear

I have taken a picture
almost identical to
this before

For me, nearly everything still relates back to then. A squirrel scurrying past, the smell of the earth under a group of fir trees, the texture of a wetroom floor under my bare feet, the word "agenda," I could go on and on. Everything is linked with a memory. It may be two years on, but the whole foundation of my life now is built on that time, because now I am living in recovery. Perhaps it is not disproportionate because that was when I learned a new way to live. Much as your childhood informs a huge part of who you become, that period of my life forms a huge part of who I now am. Maybe that's OK for now, if I can learn to live alongside it.

Credits

For a written or audio version of the full poem see links below:

https://yellowmaus.wordpress.com/2017/01/07/hold-everything-dear-by-gareth-evans/

https://soundcloud.com/user-115260978/374-hold-everything-dear-for-john-berger-by-gareth-evans

How To Tell When You're Overwhelmed (or at least, when I am...)

I was so overwhelmed that it took me half an hour to work out that that was why I didn't feel quite as all right as I had been doing.

Clues that I will use for reference in future:

• Thinking a million things at once, yet completely unable to answer even fairly simple questions or focus on one specific thought or problem
• Or it feeling like the Brian is completely empty
• Not able to work out how you feel: "I thought I was OK but now I feel like I might not be" but unable to elaborate. Eventually after rambling aloud intermittently for a while I concluded "Maybe the feeling is anxiety. Or maybe it's not, but I think it could be."
• A sense of impending Bad Things (eg. meltdowns/shutdowns/increased urges and likelihood of acting on them)
• I took off my hoody after realising it was very hot in the room, and shortly afterwards noticed I was really quite visually overwhelmed by my stripy T-shirt!
• After about half an hour I realised my body wanted to cry

Other clues I have noticed in the past include becoming irritable, becoming increasingly stressed by mess in the house, feeling more sensitive to noise, struggling to make decisions, finding change even more difficult than usual, wanting things "just so," not being able to let inaccuracies go (and not in a humorous way like usual), pacing or fiddling more than usual. The list could probably be infinite!

How do you notice signs of overwhelm?

Interestingly, I noticed that after I had the thought "my body wants to cry," my hands became still and my gaze focused on the shape of my Tangle. My thoughts stopped racing although I still found it hard to think. It was almost as though through my continued rambling I had reached the thing which was salient at that time and my mind and body came to rest, dwelling on that realisation.

Now crying is not something I enjoy, and the second half hour was spent whinging about how I didn't want to cry, along with a lot of sense from the person who is paid to talk sense to me. What might happen if I did or didn't cry, etc. etc..

In the end, once outside my body took me for a wander and I let it do its thing (for once I had no other considerations as Baby Peggy had another hour left with his Peggy-sitter). And now this afternoon I feel much better. The sense of impending Bad Things has gone, and so has the ?anxiety. I still feel exhausted but that's not surprising as I have had a busy and fairly stressful few days even though many of the things were positive and enjoyable (hence not realising that I was overwhelmed, though you'd think I'd know by now). And I've been awake since 6am of course! Time to try and go a bit gently and remind myself to watch the old occupational balance a bit. A new routine in two weeks will help, if I can construct it with the right balance.

Yay

I met a new therapist the other day. When I told them I probably wouldn't look at them much they responded "that's no problem at all, don't worry about it", and followed up with "I'm a person who tends to look at people quite a lot - does that bother you as well?"

Yay to people.

And yay to having come far enough that I am quite happy when I meet new professionals to begin with "Is it OK if I take my shoes off? Also, I probably won't look at you much. If the fire alarm goes off I will be a ball in the corner, don't worry about me. I will use a fiddle tool because it helps me. I work well in writing, with direct questions and with time to prepare my thoughts." Well, I don't reel it off quite like that - that would be a little overwhelming for them, but you get the gist!

So much less spoon wastage than trying to mask all those things because I don't feel able to say them or I'm unaware of how helpful they would be. Increasingly I take a similar approach at times in other (social or work) situations where I feel comfortable to too.

Also, how exciting that I now can actually at the beginning of therapy SAY (or write) what I hope to get from it and what I want to work on etc?! Because that is OK. And is even how it's meant to work... Yikes, all that therapy previously has finally got me to the point where I can be useful in therapy 🤣

Stimmy

I'm pretty sure when I went for a gallop after a heavy therapy session this afternoon that I raised some eyebrows. 

Sometimes I have to choose between blending in and staying regulated.* I could have chosen to remain inconspicuous and probably felt stressed and dysregulated all evening, maybe with a few meltdowns in the next day or two, and some struggles to use the right coping strategies. Instead I opted for a five minute galloped perimeter of the car park. I happened upon some beautiful crocuses and exclaimed "CROCUSES!" in a loud voice (nobody was very close!). I enjoyed that so I repeated it a few times. Stopped to take some pictures of the crocuses, resumed my gallop and tiptoed along the kerb back to my car. Tiptoes are great when I'm riding high; it's like it focuses all the sensation into a small but intensive area. I also like to spread my arms as though for balancing. They join in on the gallop too. And a few jumps interspersed for good measure.

Stimming is fun but stimming is also seriously important. 

I think stimming is one of the autistic traits most misunderstood. The word is misunderstood, the actions are misunderstood and the reasons for and importance of stimming are misunderstood. 

Let's start with the word. Basically, it's what it says on the metaphorical tin: a shortening for self-stimulatory behaviour, ie repetitive actions that give sensory feedback for the person using them.  Everybody stims: maybe you're a pen-clicker or a foot-wagger or a hair-twizzler. Stims tend to happen when people are tired or anxious or bored. They regulate our stress/arousal levels.

I don't know if it's just locally or just in childcare but I have frequently heard the term stimming used as a synonym for actions that would be sexual in adults. Of course, these can be a form of stimming, but in some places this seems to be the only meaning of the word, which becomes confusing and unhelpful when trying to talk about stimming in general. Just an aside, but it's a bit of a bugbear of mine because it can be so misleading!

Autistic people often stim more frequently, for longer, and more obviously than others. Maybe because living in a world designed for people who aren't autistic means stress levels are constantly raised. Or because sensory processing is different (the same sound/taste/smell/touch/motion/other sensation registers more strongly or weakly, perhaps with an emotional response as well). Or because the person is less aware of or less concerned with what others think. Or because they are more likely to pay attention to what their body wants (or their body is more likely to demand it!). Probably a thousand reasons.

According to the NAS (National Autistic Society) website, "stimming or self-stimulatory behaviour includes arm or hand-flapping, finger-flicking, rocking, jumping, spinning or twirling, head-banging and complex body movements. It includes the repetitive use of an object, such as flicking a rubber band or twirling a piece of string, or repetitive activities involving the senses (such as repeatedly feeling a particular texture)." 

I have little stims like rubbing my top lip with my thumbnail or pressing my thumb together with each finger in turn, medium ones like spinning my Tangle, or pulling my eyebrows, and big ones like galloping. Some I only use in certain contexts and some I only need in certain contexts. Some are for when I'm calm or contemplative, some are for when I'm wound up, and some pop up in a variety of situations.

I touched on the reasons for stimming above, but they are of course infinite. Major ones include enjoyment, to gain sensory input, to reduce sensory input and to calm and soothe stress eg from unpredictability/change/sensory overload/emotional overload. There is always a reason for stimming: even if the stim is harmful in itself (eg. hand banging or excessive skin picking) it is serving an important purpose. If the stim is not harmful there is no reason to stop it just because it is deemed "strange". If it is harmful or the person wants to stop it in order to mask (masking is risky but is chosen by many people in some circumstances, or happens unwittingly), it is vital to find another way to serve the need it was fulfilling.

When people come across someone stimming in an "unusual" way - perhaps rocking, squeaking, spinning or hand flapping - many emotions may arise. Fear of the unknown, confusion, worry about whether the person is safe or what they may do next, or even simply surprise. The more we talk about it, the more I hope that the natural response will become surprise, or perhaps even happiness that people feel comfortable enough to stim freely in our presence.

I looked odd for sure. But I was regulated after that. Five minutes of weirdo for a chilled out evening, I'll take that.

*There are increasingly spaces where this choice is less necessary, and by writing this kind of thing I hope more places become like that. As I decrease my masking I am tending to find that although I may not be inconspicuous, in some places I am still accepted and respected even when I stim. In autistic online spaces stimming is celebrated and when new "stimmy" finds are discovered they are shared to help other people. Yay to this kind of thing!