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.

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!

A Perfectly Square Start to Parenting

When I was pregnant, I made sure to clear my diary for the first couple of weeks after baby was due. I was very aware that the first few weeks pass in a haze of feeding baby, changing baby and trying to catch a few minutes' sleep wherever possible. The general message from pretty much all directions was "You'll be so busy with baby and so exhausted, it will consume everything. After a couple to a few weeks you might feel up to starting to do a few things again."

This is not how it panned out for me. The reality was that my baby slept most of the time for the first week, and when he wasn't sleeping he was eating. After the initial couple of days of feeling more sore and more weak and wobbly and more exhausted than I could have imagined from the actual birth itself, and after the first relentless night which had to be survived in that state, the quiet of the following week quickly got to me. Once I'd recovered from the worst of the birth process itself and the sleep deprivation hadn't built up again, I didn't always feel like napping in the day even though I was exhausted at night. In the early days there were long spells where my baby was sleeping and I suddenly found myself at a loss. 

Because my body was still recovering I wasn't up to doing much physically but my brain wanted to be engaged and doing things. The trouble was, I hadn't been expecting that and somehow couldn't work out how to entertain myself. It was confusing!

Of course, once I realised what the problem was it made complete sense. I know that I thrive on routine and that although I need lots of down time, I start to struggle pretty quickly if I don't have one thing in my day to "do." It's usually best if that thing involves leaving the house. When I don't have a change of scenery or a focus to my day everything becomes a time-passing exercise and my mood and thoughts soon begin to deteriorate. I've done so much work on occupational balance over the past couple of years that I'm really not sure why it was a surprise that the same needs applied from one week to the next even with a baby in tow!

I suppose because having a baby is such a fundamental change to life. My life will literally never be the same as it was before (Neither in a positive or negative way, it is simply a fact that it is intrinsically different now. Although I have to say I think it's the best thing that could possibly have happened to me, but more on that another time!), and I fell into the natural assumption that because the change was so all-encompassing that meant that nothing would be the same. I prepared myself to have no expectations for how things would be, to know there would be challenges and to just take each day as it would come, and learn to build a new normal with my family. 

In truth, this is a helpful approach and many things do change, but what I had perhaps overlooked (despite one or two insightful people suggesting it to me!) is that I am still the same person underneath it all. I still need a variety of occupations throughout the day. I still need familiar routines. I still carry many of the same anxieties, thoughts, memories and emotions. This is all OK. It doesn't mean I'm some kind of substandard mother because I'm not completely enclosed in a baby haze. It means I am authentically myself as a parent, which is absolutely the best way I can be for my own wellbeing, for my child to learn how to be and accept himself and therefore promote his wellbeing, and for Mr Peggy to have a less stressed wife and open communication and a good gauge of how I am doing and what I need as well as my being able to meet his needs better because I am doing well.

I know I'm an OK Mum. I know the feeling of contentment and completeness when I cuddle my baby or when he stops crying at the sound of my voice, and I know the rush of love and awe when I catch sight of him after an hour of not seeing him. I am hugely thankful for this, being at an increased risk of perinatal mental health problems due to my history. For a few days I questioned myself because I differed from my expectations and my perception of how parenthood "should" begin, but not all brains are the same, and so I once again adjust my prejudices to accept who and how I am, knowing that listening to myself and honouring what's right for me, as long as it isn't at odds with what's right for my family, is the very best way I can parent.

Working from Home

I have never worked from home before. My job is not one you can do from home: it involves being with people in person. You cannot provide personal care for somebody who is 15 miles away. Video interaction is not accessible to the people I work with (and it is difficult for me!). Pretty much zero of my daily work activities can be undertaken remotely. 

And yet I find myself embarking on twelve weeks of working from home. Because of the government's pandemic guidance and my employer's duty of care to me I am no longer allowed to attend work in person other than to collect and drop off work. My duties completely change overnight. My work environment changes. My daily routine and weekly routine change. The amount of interaction I have with adults changes. 

Working three days a week was the perfect balance of people and isolation, productivity and relaxation, structure and freedom. I had learnt to manage my energy balance and mental wellbeing well enough to stay well and function in a way I am satisfied with more of the time than not (and using the support I have available), and to enjoy my life, on the whole. 

And now everything changes. Again. I know everything changes when baby comes anyway, but that is different: I am busy, I have a focus, things will naturally change and find their own rhythm, and I have had nine months to prepare for it. 

This change is not optional. I was in denial about it for a long time after the possibility was introduced to me, and naively thought I might be able to fight it, but it turned out to be one of those "choices" a bit like the "if I don't make this 'choice' they're going to section me" ones. So I didn't pick it, I am not enormously prepared for it, it is a big unknown, and despite the fact that I will still be working it involves a lot of time at home, which is well documented as being a stumbling block for my mental health. 

On an autistic level the change to routine and to nature of my work is problematic. I like my life to be in boxes, and different ways of spending my time are contextualised by environment so to have work and home in the same place without a transition time is difficult. Work is a large part of the rhythm of my week and helps me mark the passage of time. There will be more time in my day to fill as I won't be travelling. I struggle to transition between activities when I'm at home (autistic inertia) so I can get stuck doing one thing which turns out not to always be great for my body or mind. 

On a general human being level the change to interaction levels is problematic. I need people and I need not people. At the moment that balance works pretty well. My need for people is fulfilled by work and Mr Peggy and the odd one-to-one socialisation but I will lose out on the best kind of interaction for me: where I am parallel with others: engaged in the same task and just interacting between ourselves as and when we choose.

On a more personal mental health level the associations of not being at work are problematic.

Almost exactly this time last year I came back to live at home and due to covid thwarting my original plan to return to work before coming home, I had a month not working before I began a very phased return. The time of year is already difficult with memories (see my previous post), and being at home feels like a replication of that time. Driving home after my last day of school brought memories of the drive home from hospital, and of previous ends of year that were full of sadness and anxiety. 

I also worry that the combination of being of work, not feeling great and waiting for a change to come will take me back to September 2019 when I was home from work unwell. I wouldn't have thought of this except that my first trimester felt very much like that indeed, and I was still working then. I struggled immensely with those mental effects of the first 13 weeks of pregnancy (although it took me a while to pinpoint exactly what it was!) so it does now occur to me that I am again entering a similar situation.

I am trying hard to focus on the positives of being at home. I can be flexible with my time and arrange my support throughout the week to help me cope. I can conserve my energy for things that I want to do - as the exhaustion of being in the third trimester increases I won't have to save all my energy for the physical demands of my job and I will likely be able to work for longer. As lockdown eases I will be able to get out and about more, to meet with friends, to join my in person yoga classes and gain interaction in those ways (although this also brings some unease because it doesn't feel right to be out enjoying myself in person when I'm not allowed to work in person). I will have more time and energy for preparing for baby as my travel times will be gained back. I have a great support network who will do everything they can to help me cope with this time and maximise its benefits.

Let's see what happens.

Emerging after lockdown as a changed person

TL;DR: If you can help yourself, please don't comment on my appearance here or when you see me!

Trigger warning: bump picture

Please take a good look and familiarise yourself with the picture below so that you do not have to do it when you see me!

With restrictions starting to lift and the end of the Easter holidays I am going to be seeing lots of people I haven't seen for a while. I have written recently about the difficulties of coping with change, particularly change I feel out of control of and when I can't decide when and how I present it to the people around me.

For this reason I am posting a picture of what I look like now. This post and posting a picture of my body, which I would never normally do, is an attempt to feel in some control of the situation. In reality I can't choose whether people see my baby bump and whether they comment on it, but if I choose to post it here then I am choosing when they see it, and informing them of how they can help me by reducing the number of comments I have to deal with by one. It is the opposite of looking for reassurance or compliments: those would make me feel much worse. The only people whose judgments on my body I need to hear are the fact-based responses of my medical team who monitor my baby's wellbeing (which is thankfully excellent so far).

I have to familiarise myself daily with my image to try and accustom myself to the ever-changing picture that greets me and help me process the ever-changing sensations of my baby-growing body and what it can and can't do.

Perhaps if you have had a chance to do it before seeing me I will not have quite so many change- and body-related comments to deal with when I start seeing people again. Don't worry if you do it by accident, I know people are excited (Mr Peggy and I are the most excited of all!) and it is a natural comment to make, and I know you all well enough to know that you would never mean to cause any hurt or difficulty with such comments. I just have a brain that interprets every one of these comments, no matter how positive, complimentary and lovely, into an alert of Change. And in an autistic brain, change is scary and bad even if it's a good change and for a good reason. By avoiding comment you might be able to reduce those alerts by one!

So if you can, hold your comments on my lovely bump and your opinion of its size or shape or neatness or messiness (although I've never heard someone comment on a "messy" baby bump!!) or how well I look until you are at a distance where I can't hear you. Ask how I'm feeling or how I'm sleeping or how work is going or what I got up to in the Easter holidays, or better still tell me how you are! What you've been up to, how you're feeling about the changes in restrictions or anything else important that's going on for you.

Is there anything you'd like people to be aware of when reuniting after lockdown?

Change and the difficulties with acknowledging it

Change is ouchy and yucky. It means moving away from the familiar and predictable where I know what to do and what to expect. It means I don't know what will happen or how things will be. It means different, and for me, different and unknown is unavoidably tagged with unsafe. 

So if a change is happening I am automatically vulnerable, and my brain is telling me I am in danger. This is part of my autistic neurology not just a psychological conditioning that I can teach myself to think differently about.

A change in myself is extra problematic, because not only is the world unpredictable and unreliable, but I myself become so. For a while I am not who I am used to being, and I don't know what I think of the new version. Initially, different is almost always wrong (again neurological, not a conscious choice), so I must learn to accept the new version and whilst doing so any reminder that it is a new version increases the awareness of change and feeling of discomfort.

An unwelcome or unchosen change, or one I have no control over, feels even more unsafe, for obvious reasons.

So I like to keep my information safe, to be in control of people's perception of me, to have any changes I do decide to make firmly fixed in my head and adjusted to before they are presented to others.

When I tell someone a piece of information I am no longer in control of it. It is like a little bit of me has been stolen and I don't know for certain what will happen to it. It might get shared with more people, so I might get a shock if someone talks to me about something I haven't personally told them about (it may or may not be that I don't want the other person to know, but I certainly want to know who knows!). Or something else may happen with the information. If I tell someone I like stripy socks, they may go and buy me three pairs of stripy socks thinking it will make me happy. I might like the new stripy socks, but I did not expect them or ask for them and so they cause disarray in my mind. They might even be the wrong kind of stripes, or the wrong kind of fabric, or I might not have space in my drawer for any more socks, or I might have been looking forward to choosing myself some new socks when I had worn through some of my older pairs, but now I can't justify that because I have too many socks already. I must remember to communicate my gratitude for the gift in a neurotypically-understood way, and figure out whether I am to reciprocate in kind, or in some other way at some unspecified point in the future by doing a favour or giving a different kind of gift (which I must then remember to do!), or whether it would be considered strange or ungrateful to give a gift in return. This is a hypothetical situation but one that could happen to me, just to give you an idea of how even a simple piece of information can run away from me and cause difficulty, even though everyone's intentions are kindness and I might well like the socks!

Other people having my information brings all kinds of unpredictability. In addition to the issues above, simply the fact that they now know the thing in my head means that they may choose to talk to me about it at a time when I was not thinking about it, and that is unexpected and out of my control, which makes me feel cross, which is actually because I don't feel safe because things are out of my control and unpredictable. I find it easiest to talk about things or make changes or decisions when I am in control of them and they can't run away from me and take on a life of their own.

Changes and decisions take me a very long time to process. When I need a new phone, I start thinking about six months before my contract runs out "Soon I will have to think about what phone I am going to buy." I then need to look several times at what is available, over a period of several weeks (usually a month or two), ideally both in shops and online, before I am ready to make my decision, buy the new phone and change over to it. I thought about dying my hair for probably about ten years before deciding to actually try it, then for a few more months as I decided whether to really do it, when, and which shade to buy. It then took me about three weeks to get used to without being put out at my own appearance in the mirror. And the shade wasn't that different from my natural colour.

I tend not to consult other people until right at the end of this process, when I feel I have got my head round a change that is going to happen. I would rarely share that I am thinking of getting a new x, y or z, because somebody might get one before I'm ready and I hadn't decided which one I wanted. They might not get the one I want, or, because it takes me so long to think about it, I wouldn't know whether it was the right one or not - I am rushed into making a decision or someone making one, before my opinion is formed. And then I never like the thing because I never had the opportunity to decide whether I liked it. Once I am mentally adjusted I am a little more able to cope with other people's responses. I didn't tell anyone I was hopeful of a relationship with Mr Peggy until we actually got together. I probably won't discuss the names we are thinking of for baby until baby is born and we have decided on a name. It helps me keep ownership of the decision and feel as though I belong to the new version of things.

But because any change has been such a big mental shift, it can still make me feel unsettled when people comment on a change, because it highlights in my head that it has occurred and even when the change is a positive one it still carries a quantity of discomfort in its newness. To have people comment on a change in me makes me feel vulnerable. Perhaps because it points out the me-ness in the change - I have made a change based on a personal decision or preference, other people will see part of my personality and then be able to judge me on that. 

So sometimes I don't make changes. Often I have no desire to make changes - sameness is very happy to many autistic people. If I do make a change sometimes I don't tell anyone about it, or I hide it. The final line of defence is to head off or disarm the worst of the discomfort by getting in there before anyone can comment on it. Tell everyone about it, make a joke about it, out it before someone else can, before it's out of your control. You still have to deal with all the problems I explained before about people knowing the thing, but at least their finding out was under your control.

Changes happen when you are pregnant. For quite a while you can hide them. I told people before it became unavoidable so that it was in my control. But you can't control when people start seeing or commenting on your bump. In pregnancy it is suddenly not only acceptable but lovely and wonderful to talk about your body size and shape and CHANGES that are happening. But I am still adjusting to those changes and I don't have the luxury like when I'm going to dye my hair, of not telling anyone until I am ready to. They can say what they want when they want, and they aren't being horrible, they are excited just like I am (OK, the only person who can be as excited as me is Mr Peggy, because it is after all our baby! But they are still excited.) and most people like to talk about that kind of thing. But change for me is always uncomfortable, even when it is the best kind of change in the world, like having a baby that we have waited so long for (and I know for sure I'm not the only one who isn't always happy as Larry about everything that happens during pregnancy).

The best thing you can do? Ask me factual questions, ask me how I'm coping with pregnancy or what the best and worst things are for me at the moment, tell me lovely stories (not horror stories!) about moments you treasure from pregnancy or your children's early lives. And with general changes, a comment that acknowledges the change but doesn't focus on it can be better for me than an outright, "Oooh, you've had a haircut!" (This is one reason that I haven't had a haircut for five years. I never have to have that conversation. What am I meant to say to that? "Um, yes, that is true, clearly."). Or maybe what I'm thinking is to be specific rather than general. I prefer a conversation that is about something... where the response to what you have said is logical not something I have to dream up. Maybe pick an aspect rather than commenting generally. "I like the colour," with no preamble, rather than "Have you had your hair done, ooh it really suits you." This is similar to how I don't like greetings and would rather just enter straight into a conversation. Or say it indirectly to someone else in my hearing: "I love Square Peggy's new hair!" When it comes to acknowledging change I think for me it links a lot with Exposure Anxiety, and the types of approaches that work well with this and PDA can be helpful - indirect communication. See this post and this one for a little on this, or Google. But perhaps these are points for a discussion on neurodiverse communication tendencies!

Basically, a long old ramble to say change is hard, acknowledging change is even harder, both of these make me feel unsafe and like the world is falling apart or bits of me are being stolen. You can help by asking questions that I know how to answer instead of making comments which can leave me feeling almost violated, and by being specific, or by talking indirectly about things.

Let's Get you Sitting on a Chair

or, Please Stop Inconveniencing People

Why on earth does it matter whether or not I sit on a chair?

The only conclusion I can come to is that it makes everybody else feel more comfortable (well, everybody who's boring and boxed up in the norms of society...). 

Is it an Autism?

Today the lovely people at the dentists' surgery got treated to a visit from my Oortizum (see Harry Thompson's page recently for this to make more sense - there's been a theme about identity-first language and everyone is joking about trying to find an Autism that is lurking somewhere, somehow existing outside of a person. Anyway, I digress.).

I was trying to process a change to my expectation by flapping gently with my Tangle and rocking back and forth before I left the surgery so I could let my brain accommodate the new information and work out what to do next. The receptionist asked if I was OK to come back next week. I replied "yes" and continued regulating. A few minutes later this loop repeated itself (in retrospect, she probably meant "please leave now" and also you are being strange and making me and the other patients uncomfortable, but this is not what she said). A few minutes later she repeated yet again and my brain went bang. "I keep telling you yes! It's fine, it's fine, it's all OK" as bits of my Tangle went flying all over the waiting room.

I managed to find a corner to crouch in to gather myself and let my brain and body do their thing. The poor bewildered lady went for backup. I had forgotten to wear my lanyard - a lesson I could probably learn from, although I'm not sure how much it would have helped in this situation!

I do not want your chair!

Thenceforth the main thing the noisy, fast-talking, incessant-questioning (but also very well-meaning) dentist seemed concerned about during my meltdown was that I sit on a chair. What?!

He didn't get the point that this wouldn't help from a) my ignoring the suggestion b) my getting more distressed as his insistence became stronger c) my shouting "no" at him and getting even more distressed (if you know me you will know I am NOT a shouty person!). 

Only once I had later had time to calm down (They got me a drink and left me alone and made a plan and told me what would happen. And brought me my bits of Tangle. So really they were very lovely!) and was able to talk again and he once more asked me to sit on a chair, gesturing to one across the room, did I ask permission to stay where I was (on the floor in the corner by a chair). He said I could stay in the corner but could I sit on the chair. I finally managed to express "it doesn't help to sit on a chair" and he gave it up as a bad job and agreed I could stay where I was.

Neither member of staff was unfriendly, they just didn't know what was happening and didn't know what to do. They were feeling a little desperate as I wasn't responding (again, to people who know me this would be a positive sign that I am working on recovery). I could tell this because the dentist urged me that I would have to answer his questions about how to proceed or he would have to send me away into the cold which he didn't want to do. He was at a loss as to what to do with this perplexing and unpredictable individual.

Ah look, the people are behaving

So perhaps my sitting on a chair would have made them feel better. I would look normal to them and anyone else coming in and they would feel they had helped me because normality was restored in their waiting room.

But the thing is, I wouldn't have been OK, or not as quickly. Crouching and being in a small space help me to feel safe, and this makes my recovery quicker and my stress levels after the incident lower, reducing the risk of further overwhelm a little.

For these people the sign that I was OK was sitting on a chair, and the sooner it happened the better. But for me that would not have been better. It would not have meant that I was feeling better. It would have meant that I was sitting on a chair. Less regulated than I could have been. But behaving normally. Putting on "normal" behaviour doesn't magically make the normal behaviour helpful to me, and it doesn't change the way my brain works. 

So next time you feel tempted to ask someone to change their behaviour, just check whom you are trying to benefit - do I want them to feel better or do I want them to make me feel better? If they're harming themselves or someone else then absolutely they may need to change. But maybe what they're doing is just what they need to be doing and maybe I could be OK with that. Maybe if I'm OK with it it will help others feel more comfortable around "unusual" behaviour, which will mean more people can be more themselves in more places more of the time. And when people know they can be accepted rather than making people scared or uncomfortable, they might just have a better life.

I searched for unusual behaviour on Google images and this was the result 😂

Also a note:

Double empathy problem. He didn't know that I knew they were trying to help. He kept reassuring me of this later on so it was obviously bothering him (and even rang the GP to get them to check on me - a whole other hilarious story!). I had no animosity towards them but they did not know this: my behaviour, distress and shouting were due to my brain not being able to deal with everything that it was being asked to, and nothing to do with my thoughts or feelings towards the people involved. I think perhaps people look at a meltdown or shutdown and interpret it as an emotion, and an emotion that is felt towards them because they are there or they were involved in the escalation of distress.

I rarely feel an actual emotion in these states: what I am feeling is overwhelm. Brain exploding because more is being asked of it than it can provide in that moment. It doesn't even have space for an emotion or an opinion on things - all that is in there is "too much" or "help" or "I can't cope" if I had to try and translate it into something.

I kept thanking them and apologising. I didn't know whether they knew I wasn't upset with them but just couldn't compute the change quickly enough. I didn't know if they knew that I knew they wanted to help.

So my communication was not understood by the people with me, and at times I did not understand theirs. An interaction between people of the same neurotype would likely have resulted in less confusion, a quicker de-escalation and less concern afterwards. 

29th September

This night a year ago was the last night I spent in my own bed for nearly eight long months. I was trapped, terrified and almost hopeless. The following day I ended up in hospital.

This year I have just got back from ballet class where the familiar syllabus is like an old friend, constant through everything that changes. I have jumped and turned and been en pointe. Last year I could barely walk a few steps. 

Tomorrow I will go to work, to my wonderful new class of little people with huge personalities. I'm enjoying them so much, perhaps all the more because I only got two weeks of last year. 

It should be as simple as that. I was barely able to stand for a minute or two, to speak more than a couple of words together or to concentrate on anything for more than a few minutes. Now I can walk in the countryside, dance, drive my car, fly on zip lines, go to the shops, relax on my own sofa at home with Mr Peggy, going where I want to when I want to and doing what I want to. It should be that simple. 

In the hospital I found hope and fear in equal measure. To begin with, enormous relief that my ordeal was over, everything stopped, no more fighting. Peace at last. Hope for freedom and life to return. The first night's sleep I'd had in weeks. But the darkness didn't leave; it wasn't that simple. 

There was pain, fear of the immediate reality and of the future. Gradual realisation that this was going to be the long haul. So many experiences that overwhelmed in so many different ways, which I still haven't processed now and don't know how to (sometimes I think I have more problems now than I did before!!). 

The struggle continues daily, well multiple times daily. It rarely leaves my thoughts. I don't always win. Emotions and memories party in my brain and body uninvited and I struggle to cling to what other people tell me is the truth. 

But today and tomorrow I'm trying to focus on what I can do that I couldn't do before. This time last year I was deluded enough to think I could be back to school by half term. I was off for the rest of the year. This year I will be there tomorrow and on the first of October, and through November and December and 2021, full of life. 

A Whole New World

Reflections on the way autism adds to the difficulties of discharge from hospital.

I've lost count of how many times I've said "I don't know how to do this" and "I can't do this". And the times I've thought it are at least tenfold more. 

Overwhelmed is how I'm feeling. The sadness and grief of the loss of a large and life-giving community of patients and staff who have been with me through every beautiful and ugly step of the last seven months. 

But also the sensory aspects of the change of environment. The soundscape is unrecognisable, and not just the obvious differences like the exchange of bleeps from the locked doors, emergency buzzers, fire alarms, passing of people in the corridors and general chat of a large community for chickens in the garden. The space itself sounds different. The rooms are small and the space is small, the furnishings softer and more prolific: sound reverberates differently. 

Noisy blighters

Also noisy blighters!

Visually it is very overwhelming. I've got used to an uncluttered environment, with less stuff in larger spaces, high ceilings and calm spaces cleaned at a minimum of daily by a fabulous domestic team. 

The smellscape feels jarring and hard to deal with. I struggled with one or two of the smells on arriving at the unit, but now I'm home I'm bombarded with the toilet air freshener, guinea pig smells, scented feminine hygiene products, and just the ambient smell of a house with different people in it.

Driving through the streets, I am bemused by all the people. It's not that it's busy - it's not - it's that I don't know the people. For the last 2 months I have only seen people I know. Plenty of people, but only ones I know. I'm a bit confused by the sheer number of randomers around the place. I don't know who they are or what they are doing or why they are there. I can logically understand their presence (eg. they live here and are out for their daily exercise), but it confuses me and takes extra processing capacity to accommodate. 

Different but definitely good!

The differences aren’t necessarily bad in themselves (some of them are definitely good - Mr Peggy pheromones, a more comfortable bed, guinea pig cuddles!), they just bombard my brain because they are unexpected and therefore demand attention. To start with my brain says they are all bad and wrong, but it will gradually filter out which ones it genuinely doesn’t like and which were just a problem by their newness. 

Reassuring constants

I'm trying to use an invaluable tip from my named nurse: when everything seems wrong, look for the things that are right. I can still hear the birds. I can still touch my blanket, weighted sloth, soft toys and my clothes are the same. I can still take Ma Peggy for a walk on the phone. I hold on to the stone my psychiatrist gave me, and the memory of every non-socially-distant hug, every look and word spoken to me as and before I left. When I reach for my things in the shower they're not on the shower chair but they're still an arm's length away at the end of the bath. 

And I'm trying to be compassionate to myself. When I arrived it took me three weeks to feel even a vague sense of being able to live there. I mostly cried, ate and slept for three weeks: perhaps I shouldn't expect it to be all that different. I don't know whether for a non-autistic person this would be different - perhaps they may expect that I would adjust more quickly because I'm going to a familiar environment, and maybe I will, but the environment doesn't feel all that familiar. It's jarring and constantly throwing difficulties at me, and that's OK. It will pass in the end, just as it did when I moved to the unit. I just need to accept what is in the moment and use all my soothing skills and coping strategies. 

Whatever changes, hope is constant too

Failure or Progress? The mental health analysis

Welcome to Week 5! All I can say of Week 5 is that it has offered a veritable plethora of opportunities to practise self-compassion.

Joking aside, it has been rather an odd week which has at times baffled my attempts to disentangle my thoughts and responses to events and actions.

I'm glad I have engaged in the disentangling process though: it has been rather enlightening. When I originally wrote the sentence above, it read "has at times baffled my attempts to disentangle the positives and negatives." My rewriting reflects way my perspective is changing, which is actually a pleasant surprise, because as well as logically being able to produce the arguments I am beginning to almost believe them. Credit I believe to my psychologist and some really lovely people who keep talking sense at me. It's easy to forget where I've come from, or to feel discouraged when I see the long road in front of me, but little bits of change really are happening - something I never properly believed possible. I hoped, but I could not see how it could actually come about. I suppose that's why we go to therapy...

I did a Thing!

So yes, this week included a Thing. I did a Thing! I took a day off work sick. I mean, admittedly I did have to arrange it the day before, and I had to battle the Brian, but I did the Thing! And do you know what, I have such wonderful people around me that I spent the rest of the week being congratulated by various people (from Mrs School-Peggy to Mr Peggy, Welsh Peggy to Mummy Peggy and other lovely Peggies) for my rather unorthodox "achievement".

I fought with self-criticism and feeling useless, with bitter disappointment that I had spoiled my chance of a full half-term with no time off, and many other emotions, but those around me gave me another voice to hear. One that saw the progress in being able to recognise the danger signs before crisis. The bravery in deciding to communicate that to someone else and following up that decision. The seeds of self-care in listening to and acknowledging my needs when they aren't what I want them to be. A voice that may one day exist within me, as I realised that a term with a day off but without meltdown at school may genuinely be better than a term with full attendance leading to decline in my mental health and functioning level at work and a holiday barely recovering from the term.

Square Peggy 1 - 0 Brian

But then of course came FRIDAY. Just to test the battlefield. FRIDAY did not treat me well. I was fine in the morning, but was battered with two double-attacks of immediate and unexpected changes that re-wrote the whole day. I managed to weather the first attack with a good old tried-and-tested bathroom sob session and told myself that I could get to lunch time and then the afternoon would be OK (a low-stress activity for me that was as yet according to timetable). The second wave finished me off and as soon as everything was safe I excused myself for another bathroom session. Decided in a very grown-up manner to let Teacher Peggy know I was struggling, but we ran into each other on my way back to class and she bundled me off to Safe Peggy and I ended up trundling home.

Cue Brian trying for another point. I hadn't even managed the term without meltdown at school now. Why can't I deal with the things like other people can? Why should I be special? Not pulling my weight, useless, causing trouble: mean comments ad nauseum. And yes, I am still struggling with those thoughts, and with the worry that it will happen again or that I will end up back where I was, be unable to work full time etc etc.

BUT even there I know it is not all bad. I got through the first wave of death. I didn't go into complete crisis at the second ("I'm not counting this as a crisis because x, y, and z" was actually said to me!). I was able to tell somebody what the problem was. I looked after myself during the day - went for a tramp on my moor, really stuck two fingers up at Brian by stopping for a hot chocolate on the way home, and put no demands on myself for the rest of the day.

So for the minute, I'm practising seeing that "failure" and "progress" may be closer than I think. Treating myself with acceptance and aiming towards compassion. Not labelling things as "good" or "bad" but letting them just be what they are, with the rainbow of emotional responses that brings. (See this fabulous article by Joanna Grace on rainbow emotional regulation.)

And I am loudly expressing my gratitude for so many people who tell me things so convincingly that I almost believe they mean them, who let me experience a voice other than the one in my head, and who back me up when I nearly hear it myself, celebrating when I follow it. You have had a big part in any progress I am making. Thank you from the bottom of my heart for being with Team Peggy.

I have autism. This means some things are more difficult for me than they are for other people. It can sometimes be hard to be me, but it is not wrong to be me.

Failure or Progress? When the autism monkey invades

This term has been going pretty well. Admittedly I've flagged a bit since week two, but we're on the home straight: 4 of 7 weeks completed and this is the last week of my evening commitments so I know the next two weeks will have more space. I've got much better at dealing with things, understanding and communicating my needs and so on and so forth, so have been quietly looking forward to completing a whole half term clean: last term (an 8-weeker) only held one drama and that was solved by the new and groundbreaking technique of going home and recovering (shocking I know!).

We had a great time!

Then came this week. I misjudged the weekend, having a wonderful day dancing on Saturday with friends, but instead of taking Sunday as a nothing day I took the utterly wild decision of doing an hour's shopping on my way home. This sacrificed my alone time and I had jobs to do in the evening once Mr Peggy was in. I should know better, but sometimes I get complacent and think it can't cost too much to do one extra Thing at the weekend (I generally limit to one Thing per weekend, and try to keep alternate weekends empty, having learnt that this allows me to function during the week). Turns out it does if you're me.

Monday nearly finished me off and I knew I wasn't on top form for supporting some of our little people, so I did a Thing (bold just to differentiate from the Things above!!). I found Mrs School and told her I thought I needed to call in sick for tomorrow. Mrs School has been on this whole parade with me and understood what a Thing it was and was very proud of me for my great achievement. I spent the rest of the week being congratulated by various people for this step in my development: rather humorous but very powerful. How grateful I am to be surrounded by supportive Peggies who are invested in wanting the best for me.

So, having done the Thing I returned on Wednesday, back to functioning level and feeling rather pleased that my bravery had paid off. Yes, I did mourn the loss of my clean half term and deal with some rude Brian behaviour but I came out on top and realised that I am still the winner because actually, I recognised the need and acted on it before ending up in disaster-land. I was able to reflect that a half-term with a day off and without crisis at work is a better achievement than a full half term having dragged myself along at 25%, lost progress on my mental health and needing the full holiday just to begin recovering from the term. Yay! Well done Peggy!

Enter FRIDAY MORNING.

SQUARE PEGGY is much as she has been every morning. She struggles to get out of bed and reflects that actually, she does pretty well day to day. When you consider that by the time she gets to work she has overcome several difficult transitions and sources of anxiety (Getting out of bed, getting out of the shower, leaving the pets, getting out of the car. Dealing with the anxiety of possibly being late, what might happen during the day, whether she's been an acceptable human being etc.), it's reasonable that she sometimes feels a bit wobbly. 

FRIDAY MORNING presents SQUARE PEGGY with an email announcing that the weekly Friday morning meeting (that she panicked for the whole journey she would be late for) is cancelled. She doesn't cope well without this meeting and if she misses it her Friday always feels uncomfortable. FRIDAY MORNING then informs SQUARE PEGGY that assembly is semi-cancelled and to take place in classrooms instead.

SQUARE PEGGY cries in a bathroom for 20 minutes to process this information, then gets herself to class. She plans to try and tell someone it isn't a good day but this is difficult to communicate. She tells herself that if she can get to lunch time she is doing hydrotherapy in the afternoon and that will be OK. She can do this.

As she goes to collect the children FRIDAY MORNING informs her that the pool is closed due to illness. Five minutes later a visitor she had forgotten was coming for the morning enters the room. She holds it together until the children are safe and settled in class and excuses herself to visit the bathroom, where she cries for another five minutes. 

Long story short; Friday is not spent at school either. I've not had the week I was expecting, and today hit me right out of the blue when I thought I was fine.

A tramp on my moor solves a lot!

I have come a long way though: I am now able to reflect with less self-criticism and take on others' comments about the difference between this week's wobbles and those in the past.

On Tuesday I called it before it got to the stage of turning into a crisis. Full on win.
Today I had no idea it was coming, but actually I overcame the first wave of Bad Stuff and didn't completely melt down even at the second. I was able to verbalise what the problem had been, I didn't have to wrap myself in my blanket and calm down for half an hour, I could accept that maybe it was sensible to go home. I went home even though Mr Peggy was there, and I told him I was coming. I looked after myself on the way home, because I'm learning that I am not an exception to the rest of the world: I make progress when I am safe and cared for, not when I am told off and criticised.

I still have an ideal of perfect functioning that I feel substandard for not meeting, and the outcome isn't what I was looking for, but neither is the outcome entirely negative. I am learning, I am progressing, and as that happens I may well move more towards my ideal of functioning. But if I don't, I will accept that. I have autism. This means some things are more difficult for me than they are for other people. It is sometimes hard to be me, but it is not wrong to be me.