More Letters

Today is a wading-through-metaphorical-treacle day. A zero executive function day. A day where I keep finding myself motionless, staring at the items on the supermarket shelves and the world seems distant. 

Only the items on the list are bought, and the ones that left any room for interpretation are left unbought, because I don't have the capacity to make decisions about what to buy. The shopping has been brought into the house, but not yet put away because I just don't have the spoons. Having dealt with the full-change-of-clothes nappy incident at the beginning of the shopping trip, we also had to make another toilet visit before home time to deal with my anxiety digestion. 

It's the end of what I'm affectionately calling Stressy Season - the longest of my calendar-based trauma triggers - which spans six weeks through September and October. This year I finally have a name for all these things that happen to my body and brain when it is reminded of certain past events.

PTSD is not just the curled-in-a-ball-on-the-floor-crying-rocking-unable-to-speak-occasionally-with-screams-coming-out-or-hurting-of-self panic attack after the fire alarm. It's not being able to concentrate on what you're doing, it's dread when you look out of the window, it's feeling irritable at the slightest thing, it's going to lengths to avoid places and things that make you remember, it's feeling sick all the time and wild bowels, and so much more.

Dem autumn leaves are well threatening...

Autistic people are more likely to get PTSD and are less likely to have it identified correctly. We are both more likely to end up in potentially traumatic situations and more likely to be traumatised by experiences not traditionally seen as traumatic. Because of this and our neurological differences we are less likely to see and be understood by professionals who deal with PTSD and thus also less likely to receive helpful support (which again may or may not differ from traditional treatment). I'm thankful that a year after one misdiagnosis I was able to access a second opinion, and that this person understood and was able to explain to me all of these things about autistic processing and so forth, helping me to understand and accept that this is a box that applies to me despite "nothing traumatic having happened" (I did tell the first person nothing traumatic had happened, so I guess it's no wonder they thought nothing traumatic had happened...). I'm not just making a fuss over nothing; my brain is trying hard to do a job.

The lady in the supermarket who commented "Don't worry, I'm amazed how well you're managing it all" when I apologised for forgetting to put the little divider at the end of my shopping on the conveyor belt (another sign my brain is not doing its job) had no idea what "it all" really was. To be honest, a baby in a sling, who was by that point sleeping, is no trouble at all, unless maybe she had clocked the previous blowout scene. I didn't even have Pre-School Peggy with me. "It all" for me this morning was PTSD and the fact that I had to collect my brain repeatedly on my circuit of the shop and coax it into doing enough of its job to get us by. Everybody has an "it all" every day, and maybe that lady realised. 

Be kind, you don't know what "it all" is going on for those annoying people you meet.

Neurospicy Summer

Summer has arrived!

I love the cheerfulness of sunshine-y weather, and I love being able to be outside more and to let Little Peggy wander freely through the house and garden without having to pile coats on or worry about wet feet. I LOVE being able to hang the washing out to dry on the line more often (or having it dry without being rained on thrice first...). Summer feels light, airy, cheery and free, at least when it's not oppressive and deathly like last year's 40°c heatwave...

I'm sure you sense a "but" coming.

Is it the "but" of "incessantly hydrating and applying suncream to toddlers is a pain, even when they're compliant"? Or the "but" of making sure you don't kill the plants (all two of them) by forgetting to water them? No, I'm sure everybody has their own minor inconveniences of summer, just as with every season, but you don't need me to tell you about those.

I don't want to be negative about summer or about being neurodivergent, but at the risk of sounding like a whinge-er I want to talk about a few considerations that feature more particularly in a neurodivergent life and might not seem an issue to others. Some are from my own experience and others are observed, mostly from my neurospicy work life. Perhaps they seem minor or strange to you or perhaps you think, "well that's annoying for everyone." Maybe so, but if someone in your life has seemed out of sorts this week it could perhaps be that they are dealing with some of this or similar, on top of whatever else life is throwing at them right now, and the struggle is genuine.

Suncream

Gotta start with that one! Suncream can be a sensory nightmare for any child (or adult) but even more so someone with sensory processing differences. I remember screaming blue murder at my Mum as a child "you're pulling my arms off!" 

The smell, for one - love it or hate it, we all know the distinctive smell of summer. But if you're a child you probably don't get to choose it, you can't get away from it once it's on you and you're stuck with that extra, possibly distressing, sensory input all day. And then consider arriving at school to find that there are six different brands of suncream that your classmates are all wearing: six different smells to constantly filter through the brain's processing departments.

And next there's the texture - sticky sticky sticky! You stick to yourself, and stuff (like sand) sticks to you. Also everyone looks shiny all of a sudden... Personally I can tolerate suncream although I do hate the texture of it. I buy the spray on creams now I'm an adult, because they leave me less sticky, and I apply sparingly only in the places that really need it. Adults in childcare settings tend to slather on liberally. It's much quicker. And you know they're safe from the sun. But maybe think twice - perhaps you could improve a child's day by applying carefully.

And finally, let's not discount the effect on routines and expectations: suncream adds an extra (and unexpected, for a while) step to the routine of going outside or getting ready in the morning. This could be a real problem for some people.

Routines

While we're on the topic of routines, these can change with the weather too - often we go outside earlier in the day to avoid the worst of the heat. This means other things move around and we don't know what to expect from day to day. "Yesterday we went straight outside when we got to school, I can't wait for today." But then today we don't. Or, "We've gone outside before our usual morning activity. When will we do that activity? What if we don't do it at all?".

We may also need to schedule in extra drinks, especially as recognising thirst (interoception) can be tricky for neurodivergent types. Washing routines may change and any other routine you can think of really! 

Clothing

Hats... some love 'em, some hate 'em. Some, like Little Peggy, can be adamant one way or the other depending on mood.

I have enough of a problem swapping from winter to summer coat (and then to none), but there's more to the summer adjustment than this.

They are awesome shorts
from a wonderful friend.
And now they say neenaw
instead of brrm!

In our house we've also had to work hard on the transition to short sleeves. Little Peggy is not so keen on them. Even before the hot weather he wouldn't tolerate having sleeves rolled up for water or messy play. If his trouser leg or sleeve (or mine!) got pushed up he would pull it down or say "oh no" to ask me to. I remember getting shorts out a few weeks ago to see whether we had any in his size. I knew about the short sleeves/trousers issue. I pulled out a pair of shorts with cars on and he was so excited: "brrm brrm!" He wanted to put them on. First they went over his trousers, then I persuaded him to take the trousers off so I could see if they fit properly. I thought I'd done it. Then he insisted on putting the trousers over the top. Even the joy of the car trousers was not enough to get his legs out, so he wore two pairs of trousers that day!

I'm all for people making their own choices but I also need to protect him from overheating now that it is hot hot. Luckily it is now already hot in the morning and we've worked out that it seems better if we put shorts and t-shirt on straight away and long sleeves are not seen. He still usually tries to pull his sleeves down but I think he's getting used to it - there is less "oh no"ing. We've only managed to be sock free one day so far!

And of course in all of this I have great sympathy with him, because I hate it too. I like the sensation of chosen textures (usually 95% cotton 5% elastane!) against my skin. I do NOT like the texture of skin against my skin. ESPECIALLY when it is warm and sticky. I wrote before about trying to get round this issue when breastfeeding. As a child I didn't like skirts or dresses. For many reasons, but one of them being that your legs stick together, at least in summer ones when you don't wear tights or leggings underneath. A big hoody makes me feel cosy and safe. Having the air on my skin is not as bad as touching skin but still feels uncomfortable. Maybe it's partly the weight from the clothing that I like too, adding proprioceptive input to the tactile sensation.

And neurodivergence doesn't just mean autism although I write a lot about that. Mental ill health also comes under the banner (as do many spices that aren't in my personal neurocupboard - ADHD, dyspraxia and many more) and can add further difficulties to the summer experience. In the past I have worn long sleeves to cover self harm in contexts where I felt I needed to. Eating disorders often come with body image issues or body dysmorphia and people may feel uncomfortable in clothing that does not cover their body or shape. People with certain types of trauma may also wish to hide their body. OCD may be triggered by a whole host of summer-related factors.

Temperature 

This one is so obvious that I nearly forgot it! Some people's bodies are particularly sensitive to changes in temperature, and this can also be a sensory issue for autistic people. Simply being hot is distressing or overloading. 

Interoception problems can play into clothing problems meaning that people don't register when they are too hot and can even become ill from overheating or dehydrating without realising.

Sweat

Tied in with temperature, the sensations of sweating can also be problematic if clothing becomes wet (NOT OKAY!!), skin feels different (don't even think about drippy sweat!!) or the body smells different. The need to wash more could be difficult for sensory reasons or because of a change to routine.

Sunshine/light

The sun is bright! Which is lovely. And at the same time it can lead to sensory overload. I love sunny weather but I struggle with too much brightness, and I'm not even someone who gets migraines! It took me ages to realise why I would feel so overwhelmed and exhausted after visiting my family in the post-covid restriction era. I thought it was because I had become unused to spending time there, but eventually I realised it was because I was sitting in the conservatory all day (to minimise contamination). I had brightness all day and I was overloading me. I started wearing my sunglasses for some of the time and it was better. But I also don't really like wearing sunglasses because they change the colours of the world and make it less vibrant and beautiful (to me, anyway). So it's swings and roundabouts! For some people the sensation of sunglasses on their face will also be too overloading so that's an issue to consider as well.

Fans

Visually whizzy, noisy ear-fillers, and disturbing air-movers! Actually, some autistic people really LOVE fans and find them very stimmy. Some love them but find them overstimulating. I find that the sensations (air blowing on me and sound especially) fill my brain, which I can cope with if I'm doing OK but is too much if I'm already a little overdone.

Food

When the weather warms up people suddenly start doing strange things like eating cold food for tea (dinner/evening meal, whatever your preferred terminology!) and eating outside! "Ooh it's too hot to eat much this afternoon we'll just have a light lunch" (what if I'm ravenous?!). These things often happen at short notice too, which is even more difficult for NDs to cope with. Obviously they're not strange to everyone but it's useful to note that what we may not even register as a change is a big difference in some brains.

Change

Perhaps the underlying issue with all of this is change - most neurodivergent people struggle with change, and the changing weather brings all of these different changes I've described and many more I haven't noticed or highlighted here. Even children playing outside more changes the auditory landscape and can be troublesome for some people. Even good changes are hard for a neurodivergent brain to adjust to, and some of those that come with summer are difficult or even distressing for some people.

Executive function

Perhaps this should come under routines, or under change, but all the changes that come with the season change can put an extra strain on executive function. Things that were previously automatic routines may need thinking about (when leaving the house I must now try and remember to take my sunglasses and to water the plants, as well as taking my dinner bag and rucksack which is my routine). There may be additional decisions to make, for example with clothing choices - perhaps I had a routine of which clothes I wore on which days and now I need to develop a new routine of summer clothes, which involves choosing outfits for a time. I need to choose whether to wear a second layer and when to take it off (bear in mind the complicated equation of tactile sensory issues, interoceptive issues and psychological issues as well as practicality about having a place to store the discarded layer and trying to remember to take it home again later!). Of course difficulty sleeping in hot weather impacts on executive function too.

All of these factors mean other executive functions such as emotional regulation become underfunded, as it were, with the effort diverted to adjusting to the changes.

So if you care for someone of a different neurotype, hopefully this will give you an idea as to the kind of things that might be going on for them. It may not be as simple as "defiance/temper/control" in children, or irritability/inappropriate behaviour/exhaustion in adults - the brain and body are doing a whole lot of extra work to try and come to terms with changes, discomforts and confusion. What looks like an overreaction may well be proportionate to what is happening for somebody. Compassion, understanding and a step by step approach can all help to make these things easier, as well as making sure there is even more time/space for whichever activities/environments help your person to be well regulated.

April, Awareness, Acceptance, Anarchy

Okay, I'll be honest and tell you there's nothing about anarchy in this post, I just got bored of the boring stuff. Unless I decide to throw something anarchical in for a laugh. Most likely my use of the "word" anarchical is about as lawless as it's going to get.

I absolutely did not plan to write anything on this topic (awareness/acceptance etc, not anarchy) during April. I actually got a bit tired of posts about autism awareness month, autism acceptance month, people supporting it, people getting cross about it, it kind of put me off Autism a bit, as it were!

BUT as tends to happen, I had a moment which got me thinking.

I had one of those jolly things, a meeting about me, yippee. They usually start with people giving a brief overview of what has happened since any previous meeting. I was happy enough with the first person's summary of our work, detailing how we had made reasonable adjustments and Peggy had worked very hard etc etc.

Then the second person said something in their update which gave me the moment. "Peggy has made lots of reasonable adjustments for me and my odd ways of working and needs." 

Why does that sound odd? Answers on a postcard or in a comment - please do actually think about it!*

That just made me chuckle, while you're thinking about it

It was said in jest and taken as such, yet speaks volumes. I know exactly what that person was saying when they said it (I think!), and I know that they know I will receive that message though it may be passed over by others as a humorous aside.

What that person was saying was, Peggy's needs are not a problem. Yes, she has idiosyncrasies and may act or communicate differently from some other people, but actually nobody is "normal" and it is everybody's job to adjust for everybody else. While we may have made a number of observable differences to our sessions to accommodate Peggy more comfortably, Peggy has also made many adjustments in order to access our (reasonably adjusted) service.

In fact, Peggy does this all day every day in order to participate in the world, because people with her idiosyncrasies are in the minority and would not always elicit respect or kindness were they to walk through life entirely unmasked.

The person was perhaps pointing out that by highlighting the reasonable adjustments we may be making the person feel more "other," more different, more excluded, lesser by reason of us having to do something for them, or wrong because they don't fit the standard.

Of course that was not what the first person meant, and neither did I take it that way. We have a good relationship and they have been very helpful to me, even if I don't agree 100% with everything they say. They were reflecting on how we had worked together in a way that worked for both of us and acknowledging that that is not a given.

But I have to say I was glad of the second voice. It reminded me that while accommodating and including are positive and necessary there is something even more beautiful: belonging. 

I have a suspicion that the second person "gets" me better than any other professional ever has because they have a similar brain. Not on a piece of paper, but just as I find understanding comes much more naturally with autistic people or other neurodivergent people, so it does with this person. My ways do not stick out like a sore thumb to them. I am not baffling or confusing, a mystery to be solved or somebody to be scared of.

In belonging a person is of equal value, equally capable, equally interesting (or boring!). They are not remarkable, and I think that is the key: when we belong we don't have to make extra effort to access the things other people access. We don't feel like a problem and our presence isn't a speciality but a normality. To be a natural part of things is what the soul needs to be well.

It's a drop in the ocean and I wish there were more voices like that in services, but every drop affects the water around it and perhaps it rippled one or two people today - it did me.

I will always belong here

*For a suggestion, maybe one day I'll write about medical vs social model of disability but I can't be bothered right now

The Shoes of Despair!

And here's another one - thank you executive dysfunction! I've waffled about executive function before so I won't explain it now, just a little reminder of some of the applications or implications.

The hole is so big you
can see my sock

I need to buy a new pair of shoes. This has been the state of affairs for several weeks, and that's a conservative estimate based on when I obtained the refund for the faulty pair. It's actually more like several months, depending on which precise stage of decay you choose to name "out of circulation," which is a little embarrassing. (The shoes are still in circulation because I have not replaced them...)

The thing is, I buy the same shoes for everyday wear. They usually last two to three years. It was hard enough this time round when I bought them in October, the previous pair having finally worn through to having holes in the soles. They don't sell the precise same ones any more so I ordered the three closest approximations to choose from. None were quite right, obviously, so I ended up with the two I couldn't decide between (why hello again executive dysfunction, lovely to see you!). Each had benefits and drawbacks and was better in a different context. I radically accepted this 😉

BUT THEN! Within a few short months one of the pairs was already dead, even by my standards. Noooo! I ignored the fact for a while, eventually I became conscious of appearing disreputable and it takes a while before I care about that!

Finally I caved and faced the truth. So I emailed the company asking for a refund so I could buy a new pair. Excellent speedy response, no quibbles, thank you Mountain Warehouse.

Less comfy but
more presentable

But, um, that was weeks ago and I'm still wearing the old ones, with a cold toe trying not to tread in puddles on wet days. I had a rough couple of weeks in March so once I surfaced from those I told myself it was only a week until the holidays and I would do it then. It is the last night of the holidays. I haven't done it. I have begun an online search several times and become overwhelmed and suddenly I am going to be faced with work again and have only the shoes I want to keep presentable or the shoes that will probably get me sacked (either for presentation or for health and safety - no open-toed shoes 🤣). Oh dear.

But buying shoes is too much brain. I cannot buy the same for they may die just as quickly. I cannot repeat the pair I have, for I need a pair with the complementary features that are better in different environments. I can't see any other similar affordable ones. Maybe I should branch out and try a completely different type of shoe, but WHERE TO START??? And so I don't. I write blog posts about it instead...

If you see me barefoot you know why 😉

Anxiety

Most autistic people live with frequent to constant anxiety at some level. For some it is relatively mild and/or manageable; for others, incapacitating.

I'm not sure whether any part of it is intrinsic to being autistic, but certainly the lion's share (not sure why the lion gets a share of autistic anxiety 🤔) is caused by living in a world where your brain type is a minority and most environments, systems and social networks are designed for a type of brain that's different from yours.

My anxiety varies wildly depending on all kinds of factors. Some I've figured out, like tiredness, sensory overload and social overload and others I haven't so it appears random. Sometimes I can go days without experiencing more than mild, ignorable anxiety. I can do and enjoy the activities I have chosen and the jobs I need to do - sometimes even things that aren't imminently urgent. At other times I know that the anxiety is more. I have to work at managing it, using different skills to keep calm and either acting the opposite and not allowing it to shrink or interrupt my life, or listening to what it is telling me and scaling things back as needed. And then sometimes it seems unmanageable. I can't do the things I want or need to do, I have meltdowns, shutdowns or panic attacks, and it is hard to recover.

Today I haven't had any of the big moments (yet!), but anxiety meant I did not speak to the person I've been trying to meet for several weeks who was finally in the same place as me. It meant I spent my half hour car journey doing breathing exercises and mindfulness to try and stay calm and avoid spiralling. It meant I didn't look for the person who's selling a balance bike I'd like for Little Peggy. It meant I struggled to concentrate on the talk because I kept having to retrieve my thoughts from anxiety-land. It meant I didn't chat to the person I wanted to catch up with about their recent visits to families with disabled children in Malawi, and whether there's any way I could help or links we could build with my work. It meant I nearly forgot to use my Tangle instead of harmful stims. It meant I had to talk myself into eating my meals. It meant noise was more noisy and stress was more stressy. It meant I didn't tell Mr Peggy how anxious I was until about the fourth invitation, at which point I still said very little about it. In fact talking at all is much more effort than normal - so I've been masking by talking anyway, which eats further into my spoon supplies (amusing metaphorical image...).

And probably a thousand other things that I didn't notice or can't be bothered to list.

Some of today's anxiety was inevitable with things that are coming up in my week. Some could have been avoided or reduced by better communication. It is compounded by memories popping up as usual and bringing difficult emotions.

So yeah. Anxiety. If you know any kind of ND (neurodivergent person - autistic, ADHD, dyslexic, dyspraxic etc) they probably live with anxiety. It might not look the same every day or in every situation: that doesn't mean they're making it up or that they're "acting out," being dramatic or manipulative. Their resources just aren't stretching so far right now. Please be kind. If you want to help, get to know the person and what helps to reduce their anxiety. Just asking is likely to automatically reduce anxiety around you even if there's nothing else we ask - many of my lovely Peggies have done this and it makes me feel more relaxed when they're around. Thanks people!

Communication failure strikes again

My PIP review form came this week. That's not what this post is about, but it does mean that at least this little incident served some purpose in reminding me that I am not a Round Peg. I often find tasks like this difficult because I think that I get on pretty well in the grand scheme of things and shouldn't be asking for or receiving special treatment like adjustments at work or benefits from the government.

But last week it turned out that not only am I incapable of sitting on a chair,* but I am not the world's finest communicator. 

I shall wait for you all to retrieve your lower jaws from the floor where they have fallen in shock...

I tried to go home sick from work on Wednesday. This is already notable, in all fairness. I am terrible at knowing when I should or shouldn't be at work: I do not understand the Line (except the one where you've been sick) and how or when to draw it. It is too vague; it is a fuzz, not a line. I had got as far as consider that maybe I should probably draw it. I could not bring myself to call in sick on teacher strike day. I would go in and give it my best shot, get through the day and arrange after school if I still felt bad that I wouldn't come in on Thursday (that is easier because it is planned and the decision is spaced away from the action and I know what to expect on the day).

After I got to work we were informed that our class would be closed and told where we each would be covering. Once the informer had left the room I realised I had only found out about the morning (processing time...). Located Person With Information. Asked what I would be doing in the afternoon. They said it hadn't been settled yet and I would find out later. Thought very quickly. Replied "OK, maybe if I'm not desperately needed I could go home: I'm really not very well but I didn't feel I could call in sick on teacher strike day."

The Person With Information saw me a little later and expressed sympathy, saying it was a strange day for us all and I could wait in my class until the pupils arrived if that helped. I agreed and mentioned that my symptoms (fever, intense headache and incredibly sore throat) were not helping either.

When I eventually went to ask what was happening in the afternoon, having already taken my lunch break because I was unable to find People With Information, I was told I was going to cover someone who was ill and needed to go home. I mentioned for a final time that I was also ill and went off as instructed.

They didn't need me for five minutes and I needed to fetch my coat and as soon as I left the room I found myself in tears. I had a little cry, washed my face and continued the day. I would like to say with grace and professionalism but I definitely whinged!!! At least I have enough self confidence to whinge about it - in the past I would have been so upset, and ashamed that I'd asked for something I shouldn't have, that I wouldn't have uttered another word about it to anyone.

The next day I went to school. And the next.

Now I bluffed it out and joked about how I was clearly well enough to be there because they hadn't sent me home, but genuinely, even though I knew maybe I should be at home, I also believed that. Remember I'm not good at making that call, and not confident in those decisions once made, so if someone says or acts in a ways that suggests I have got it wrong, then I assume they must be right.

By Friday evening I was taking antibiotics for Strep A throat and ear infection. That I have probably now spread to half my class.

The two problems were a: I wasn't confident in how ill I was or whether that was too ill to be at work, and after many years I still don't have a reliable way to make that decision and b: the communication regarding my tentative decision failed. Although I have managed once or twice in the past, I still did not have a reliable way of communicating that decision.

The thing is, at the time I only knew about one of those problems and so I believed I was wrong and should be at work because it had been judged to be so. The second problem only came out on the Friday when I asked to keep my phone on me while I waited for a doctor call-back. This was a different Person With Information and one who had only been present at my third attempt to convey that I was unwell (my attempts became clumsier each time, and I didn't reiterate the bit about going home because I had already said it so they already knew I wanted to and I didn't want to seem demanding as I have been told plenty of times in that setting and others that just because I ask for something doesn't mean someone is obliged to give it. A fact that I am only too well aware of).

Their understanding of the situation was very different from mine. They had not received that message that I had requested to go home, and assumed that I had not made it clearly enough to be understood. I got the impression that it was very much my fault that this had happened. I still don't know whether this was indeed entirely my fault or perhaps a little of the old double empathy. It is in the past and ultimately now doesn't matter.

When told that it is my responsibility to say I need to go home rather than work's to send me, I asked what I should do when I have made that decision and have asked and haven't been allowed. The Person seemed confused by this question and suggested the part about how I probably hadn't communicated clearly enough. But helpfully, they gave a script, so now at least I have a solution for problem b and I can't feel worried about it being too demanding because it is literally what I've been told to say. It's just very confusing when half the time you're told you shouldn't ask for things and then you're told you should!

So yes, the upshot is, I am not Round (for many other reasons than just this!!) and I will try not to feel guilty filling in my PIP review. It's not my decision whether they award it, anyway - I will just give them the information.

*that's a joke - one day recently I managed to fall off one in two different ways in the space of five minutes, causing much hilarity to myself and others

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.

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.

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.

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?

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

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.

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!