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

I Stole From Anxiety

Outstretched arms inviting a thief. Offering a moment.

The warm weight of trust unreserved. The moment is mine. Close my eyes, dive right in. Sink deep. Our heads together; the meaning of peace.

Warm sun on our skin, soft breeze. Distant noise like a hazy soundtrack: lawnmower, laughter, birdsong, traffic. Warm breath moving miniature lungs.

Every sensation is treasured - to be bottled, if it would. Every muscle suspended in animation to preserve our bubble.

This stolen moment so freely given heals me more than all others.

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

Sunny Day

Today feels like a happy day. The sun is shining, I know the plan for the day, I think the small person may have turned the corner in his illness, I slept a tiny bit more last night and I want to be happy. It's a good day to be happy.

But I am not.

I want the sunshine to take away the overwhelm of the past few weeks. I want it to render my nervous system regulated, to evaporate my array of painful emotions and to dance away with my negative thoughts. I want to just be thankful for all the positives in my life.

The sun is beautiful, wonderful and powerful but it does not do that. Some days, for a time perhaps, it does. Or perhaps it is not meant to.

Perhaps I am meant to sit, another day, with my companions overwhelm, fear, frustration, confusion, anxiety.

Try to self care, but what does self care need to look like today? Preparing for tomorrow so I am ready and not anxious about what needs to be done? Or investing the time in sensory soothing to try and bring my stress levels down? Calling in sick for tomorrow because I know I'm reaching my coping limits and tomorrow could ask even more of me than an ordinary stressful day at work? Or resolving to go in to distract myself from my brain, to prove that I can do this, because I'm scared about taking time off and because I can't let my colleagues down on a difficult day? Asking for more help, but what do I even want, how would someone help me?

I don't have the energy to figure it out - I don't have the energy to stop, just to keep doing the next thing in front of me (right now that's writing and then doing nothing. I know it's not any of the things that will help but it's all I can manage right now) and hope the rest sorts itself out. At least I tell Mr Peggy how I am feeling and he is there for me.

I try to make space for my new companion, compassion, in there with the old familiars. Compassion nudges black and white thinking and panic over a little, and lets anxiety lean on it. I'm not sure what its wise guidance is today, but I've asked it to join us at least. One step at a time.

There will be more sunny days - maybe the next one will be sunnier. One step at a time.