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!

Always Be Prepared

I never take my clothes off inside out, because that means I would have to turn them the right way again, either when putting in the wash, hanging up to dry, putting away or getting out to wear. That would be annoying. It's much easier to just take them off the right way.

My routines and preferences and "correct" ways of doing things generally have an important reason behind them, and I have usually formed them through experience in order to avoid anything from minor inconvenience to high distress. I prefer to wash up as I go along when cooking so there's not a big pile waiting later when we want to relax. I make sure I have everything I want to hand before I start feeding Baby Peggy. I write emails before appointments so we know what to talk about. I always put things in the same places so I don't have to look for them - I know where everything is. I always have my rucksack with me with a gazillion things I occasionally or frequently need (blanket, notebook, headphones, diary etc etc etc). 

I wasn't quite sure what to title this post or what my main point is, but I want to write something about being prepared, or being informed, or being in control.

I invest a lot of energy on being prepared in life and thinking ahead to anticipate problems and head them off before they happen. This often looks to others like being pessimistic, wasting time and energy (I don't always do things the quickest way; I do them the best way for me that makes them easier in the end) and being fussy, awkward, controlling, paranoid or pedantic.

One of my major concerns right from early pregnancy was how I would cope with being in the hospital due to the intense emotions I have surrounding the memories of my past experiences there.

I could have tried for a home birth but found the uncertainty around this difficult to manage. If staffing was short on the day or if I had complications I would have had to go in anyway, and then I would have had the additional stresses of it being a change to plan and of not having worked on accessing the hospital. And there was no way of avoiding a small number of visits antenatally - any visits to triage for concerns about movements had to be made there and although they were very accommodating about trying to get my scans at the local hospital one or two had to be in the hospital where I have the main issues. 

So I decided early on that I needed to tackle the issue rather than trying to avoid it and we embarked on a Grand Preparation Scheme.

In the end I was advised to give birth in hospital for medical reasons and had to be induced a week early, so I was glad of this decision.

Good old Stan

There were visits to the maternity unit, starting out very small with just what I could manage, with my familiar midwife. She used different routes to avoid the worst places and this was accommodated even when we had to make unplanned visits without anyone who knew me (after some very clumsy explaining by me, translated by good old Mr Peggy!). I had a summary of my needs and difficulties and how best to support me on the front of my notes, and worked on communication cards with my OT. We planned what distress tolerance techniques I could use and I practised them on visits (fidget toys, my weighted sloth Stanley, acknowledging my thoughts and feelings in speech or writing or just internally, acting opposite to the unhelpful urges that arise when trying to cope, distraction activities such as reading and puzzle books). I wrote down all the questions and worries I had (not all at once but as they came to me!) and took them to whomever could help so I knew exactly what to expect. People knew to ask me what I had written down for them, or to discuss whatever I had said in my pre-appointment email. I watched every episode of One Born Every Minute to give me an idea of scenarios that might come up or things that might trigger me in the delivery room. I carefully didn't make any rigid birth plans in case of need to change them and instead researched all options and practised telling myself that whatever I need is OK. I prepared myself to pay conscious attention to what I need and make it non-negotiable to communicate this to those around me. I thought about whether I needed to take my own soap that smells OK, prepared myself for the food situation in hospital and packed familiar snacks, and packed other familiar calming items such as my bedside sensory light.

Very brief explanation of
a safety behaviour

To some people all this extensive preparation might seem over the top or like a safety behaviour. Perhaps it is. But do you know what? For me it worked. I didn't need everything I had prepared but I had prepared everything I needed. Nothing took me by surprise, I had all the coping strategies I required, and I was able to communicate my needs. Neurotic safety behaviour that perpetuates anxiety or sensible anticipation and solving of problems? Perhaps a bit of both.

Either way, compared to my first hospital stay where I had no idea what was happening, felt very overwhelmed and ended up with a lot of unprocessed experiences that still trouble me now, this time was a world apart. I used past experience to inform me about what would be difficult and what would help, and it was worth every minute. My birth was a positive one and I have none of the overwhelming and complicated emotions attached to my memories this time. I am very grateful to everybody who supported me throughout the preparation process.

When your communication needs can't be accommodated

At the risk of becoming ranty, I'm turning to trusty Mr Blogger once more to solve all my life's problems. I mean, to help me process things that happen and deal with my emotions in a non-destructive way, of course!

I have a particular problem at the moment and I can't find a way to solve it. I've tried really hard to make it work and I've resiliently asked for help and expressed the problem multiple times, but to no avail. Hence I fear this is just going to turn into a rant.

I knew there would be difficulty in having all my post-discharge support remotely (in hospital, I had support to access remote appointments and to debrief after them and still had trouble managing), and I knew the adjustment from 24/7 care to 2 remote appointments a week would be challenging. I also knew that the phone and video calls were my only option, so I got on with it. I found things that helped: using my headphones so I can hear better and am not filtering out extra sound to hear the voice on the other end, buying extra data so I can take my support team for walks - it's easier to engage and process when I'm outside, and once I've used the movement to help me regulate at the beginning of the call I usually feel better able to sit somewhere and manage the rest of it. I take time out in my sensory cave when I'm feeling overwhelmed after a call. I am trying so hard to make it work.

All these things help, and mean that on a good day I can get benefit out of an appointment even though I come away exhausted and often realise shortly afterwards that I didn't say what I needed to say, or that I didn't process something properly and missed out some conversation that could have really helped both of us.

But on a bad day I can't communicate properly. I can't say things at all so the person doesn't even think I'm communicating (often they probably think that I'm managing with the remote conversations because I am engaging and talking about some useful stuff). They go away because they think it's a bad time to talk, and I'm left feeling even more alone, hopeless, trapped and useless because my one chance at getting some help has failed. I have to survive until the next opportunity. Which I still can't access properly because I'm still autistic. 

I have a meltdown afterwards. The only way I can get help is by dialing another number. I don't know why I think this will help. Maybe I don't, but it's the instructions I've been given and it's my last shot at trying to help myself. I'm working on resilience. Keep on trying. Unsurprisingly I struggle with that phone call. Eventually they get some information out of me. They say they'll get my nurse who knows me better to ring me back. I can't tell them that I've only spoken to her 4 times anyway and another phone call is going to add to my distress and overload, not solve anything.

She rings back later and it's a disaster for both of us. She shouldn't have been put in that position, but it wasn't anyone's fault. I couldn't give them the information they needed. I'm the problem. Another meltdown. It's a good job I've lost all sense of public decorum or awareness of anything beyond my distress or I'd be very embarrassed by my behaviour.

I get home and stay safe the rest of the day, thankful for the presence of Mr Peggy. All the blankets, time to write an email apologising for my distress on the phone and trying to explain my problem (this email to send via my other nurse, because they're the only one I'm allowed to email). Comedy TV. They all help me keep calm until the night time. The odd half hour of sleep here or there. The anxiety builds before the second of my scheduled phone calls of the week, with the poor Peg from yesterday. I can hardly bring myself to answer it. It's my last attempt at engaging in this remote support - I'm going to have to go it alone after this. I know where that is likely to lead.

The phone call doesn't help. She can't fix anything (not her fault), I can't fix anything. She goes away, not wanting to overwhelm me with telephone conversations, but meaning I'm support-less for another 8 days. "Ring the office or the crisis team if you need any more support." Great plan.

I've tried all avenues, so I guess it's like it's always been: you have to cope alone and you should be able to. I spent seven months being told it's OK to be different and have different needs, and being helped to work things out, but none of that's true in the real world. Your needs are unreasonable. The 8 days may well be longer, because I'm not sure I can face the disappointment and distress of another phone call and its aftermath. 

Sometimes lockdown is really 💩

And the OT, insurance people and car servicing people trying to ring of me may as well go stick their heads in an oven (although actually, often if you explain your difficulties they do accommodate and communicate by email...).

I won't wear make-up on Thursday: Body Intelligence gleaned from staying in bed!

OK, it's true I didn't wear make-up on any of the other Thursday either, but that is a reference for the Cool Kids who both wear make-up and listen to "actual music". Maybe I should have picked the more accurate line from the song "I will do nothing on Thursday: sit alone and be."

That is exactly what I have done. Well, I went and let the chickens out about lunch time to get rid of the anxiety that I hadn't done that or fed the guinea pigs. Brought the Piggle Peggies in for moral support and returned to the land of bed. At 3.30pm I even progressed from a prone, under-several-duvets state to seated with just one merely draped over myself.

I had done that thing that's meant to be sensible (although admittedly it may come slightly out of desperation too) where you communicate that you need something before utter disaster hits. The trouble I have discovered though, is that then if you get the thing Brian tells you in no uncertain terms that this is a catastrophe. You shouldn't have the thing: no-one else has the thing - why are you any more entitled to the thing than anyone else? Accommodating the thing has cost other people: you are an even worse person for needing, and taking, the thing. You didn't really need it anyway, you just quite fancied it - you could, and should, have managed without it; after all, nothing terrible happened to show that you needed the thing, so you must just be greedy and lazy. Now that you've had the thing, what if you actually need it in the future? You've already had it so you'll have to manage without next time. You can't carry on like this, "needing" things left, right and centre, you need to pull your socks up and get on with life like everyone else.

Contrary to appearances, I haven't just come here for a whinge about the Brian. In my nothing-ness and the approach to it I stumbled on a couple of observations.

The sensory may be more involved than I think.

A perfectly adequate set of resources for
the day

This is funny, because I've just started reading a book by Penny Greenland of JABADAO* about (well, partly about) how body intelligence (the is a whole chapter just introducing the concept of what this is) can be used in the mind together with intellectual intelligence to approach everyday issues and problems.

In the lead-up to realising I needed some space I first noticed my brain responses: getting irritable, decreased patience, increased behaviours and unhelpful thoughts. Then as things progressed over the next day or two and I became more stressed rather than less, on the final day I was much more aware of sensory responses. The piercing vehicle-reversing-beep I had to block from my ears, a scratchy label in my clothing, appreciation of darkness. The all-pervading discomfort caused by a foreign and distasteful (to me) scent on my fleece, that became so unbearable I had to give up my fleece. The proprioceptive/touch dysregulation of not wearing my fleece when I'm already stressed. The overheating of my body from the down bodywarmer I luckily had in my car that I fetched at lunch time to solve the proprioceptive problem.

To be very brief, something like this...

I don't know whether it's that the warning signs come in this order - the lower-level stress is signified by more cerebral warnings and the sensory warnings signify that things are escalating - or that my awareness works in this order: the more significant my stress levels, the more I function on a sensory level and the cognitive loses priority. I suppose processing capacity is decreased when under stress so this would make sense. Now that I think about it, there's a lot of theory that explains this, but you can go and Google that - I can't be bothered to talk about it now (but if you ask I'll go and find it!). Yesterday I also began exchanging words quite bizarrely. I explained to my fellow class Peggy that I was going to cut the Duplo lengthways to make it fit. I meant Velcro. Just picked the wrong word. I used the word purple instead of person to the same colleague about five minutes previous to this. My thoughts were jumbled and I wasn't properly paying attention to myself or anyone else.

I came across a quote in the JABADAO book today: "This woman's focus has changed so thoroughly from intellect to body that stringing words together has become difficult. She has swapped an intellectual way of being, for a body way" (page 33). I laughed aloud when I read it because it seemed so apt. The lady in question had made this transition intentionally, but I had perhaps begun to make it unconsciously, which is why the kind of work described in the book is so important. Becoming aware of and utilising this body intelligence can help integrate the systems and employ them in a helpful way.

As I was sitting alone and being today, I attempted to be mindfully aware of my frustration, my guilt, my fear and anxiety (two distinct states/thoughts for me) allowing them to be, while listening to what my body needed and permitting it to have that. It meant I stayed in bed for a really long time. It's now 4.30 and I'm still there in fact. I never stay in bed for that long. I sometimes have days where I stay a pretty long time, but eventually my body tells me it's time to do something else. I can feel the time approaching, but it hasn't come yet, and I'm trying to ignore my own judgmental feelings and my feelings about how it would appear to others and not rush my body into doing what it's not ready for.

As I knuckled down and did nothing I found some of the reasons why here was the right place today. They were mostly sensory. It's not that I'm in a dark place mentally and can't "summon the motivation" to get out of bed (don't get me started on people making those kinds of judgments). I am not psychologically bound to being here. Neither am I intensely physically exhausted and thus unable to get up, although I am tired. This time, my body has told me that this is the right place for it to get what it needs right now.

Not laziness. Important work to enable
future functioning. Down with shame.

What it needs is a lot of touch/proprioceptive input. When layered for weight, duvets and blankets give my body the perfect way to receive input to my body's entire touch receptor; its largest single organ, the skin. A friend once told me of a discovery that the more of her that was touching something, the more comfortable and relaxed she felt. I am exactly the same, and the only thing I have found that beats a good pile of duvets is swimming. When I move in water (not necessarily in a conventional "swimming" way, but in the way my body wants to), it moves past every cell of my skin. I find it exceptionally helpful and regulating, and now that I've written that, I've realised that was my first sensory clue to my dysregulation. I noticed the immediate calming effect of being in the hydro pool the day before the other sensory clues and commented on it at the time.

The other reason I needed to be in bed was to regulate via the olfactory sense. I would certainly never have intentionally sought this method of helping myself, but sometimes my body knows more than my brain (body intelligence...). Now I know that this will disgust some of you, but try and let go of your social conditioning for a minute and bear with me. Our own smells and those of our loved ones are some of the earliest developmental experiences for our olfactory sense, and thus easily processed and calming (credit Joanna Grace). I became aware part way through the day that I was frequently seeking this input, putting my fingers to my nose, and even smelling my own shoulders and arms (weird, I know!). When I leant over the other side of the bed I smelt Mr Peggy's smell, and after stroking the Piggy Peggies my left hand smelt of them. All of these were contributing to the gradual regulation of my body.

The final piece of body intelligence I gleaned also came from Hopping Home Backwards. There are little exercises throughout the chapters which aim to help the reader understand better by experiencing what is being discussed. All I could notice was that every time I tried one - they are all about listening to the body and what it wants - all mine wanted was stillness. It didn't lead me into any kind of movement unless there was a part of my body that wasn't touching something and then it asked to curl up smaller or snuggle into a bit of duvet. For me this was surprising. Mine is a body that likes to move. It needs to move. It needs to stretch a lot and it is useless at sitting still. But all it would do today was be still.

And I'm pretty sure it was right. I was right when I communicated that I needed some space. Whatever the Brian said afterwards, and it is shouting loudly as I write this, I did the right thing. And it was right to do the right thing. My brain can sometimes lie to me, but my body knows and tells me the truth. You've done enough. Sit alone and be.

*Hopping Home Backwards, Greenland 2000.

Doesn't play well with others

Been writing a lot, not about me. Clues as to the kind of week I've had. I felt a little bit hypocritical posting wonderful posts about wonderful things when the internal life has in all honesty not had an enormously pretty week. Half term hasn't sat right, I've been surviving instead of replenishing as I'm supposed to in the holidays, and I'm scared witless of what will happen when I go back to work because of that. Poor Mr Peggy has barely seen me, and when he has I haven't really been there. He doesn't know about any of this because this is the only way I can manage to tell him. Sorry, and thank you, and I love you.

Anyway... enough of putting you honestly in the picture! The Brian told me to write about being misread, and the dangers of performing too well.

Indeed, I have required every coping method under the sun, good
and bad, and as my doctor commented, a few more besides!!

It's a well-known fact that people with autism (including people who speak and people with Asperger's) have difficulties with communication. Stereotypically, verbal people with ASC tend to take things literally, don't always get jokes, misread social situations etc etc. But how often do we talk about what happens the other way round? What about expressive communication?

When people speak and have honed their copying and performing skills sufficiently to generally pass as "neurotypical", it is likely that others will forget or be unaware that they may have difficulties with expressive communication. If you're "social" enough to survive conversations and social situations then you're one of the crowd and judged by their social rules.

That can be gratifying, but I discovered today it has its hidden dangers.

My doctor's surgery very usefully has an online service, which is great for people like me. I can book appointments without the dreaded speaking machine (well, if there are any... and not with nurses or Urgent Care), I can check when my appointments are (hello last minute - or any other time -anxiety!) and I can read my notes on there too (useful for all sorts of reasons).

I read my notes after an appointment and realised I had come across as "guarded", "closed" and elements of my demeanour were noted. Now, I don't have a problem with these observations because the are entirely accurate in a way, and I imagine are clinically useful, particularly in the context of how I may present at different times.

The thing is, although they would conjure up a very accurate image of my outward appearance, the assumption about my inner state, specifically my intentions, is misleading. My motivation (albeit subconscious) in avoiding eye contact and curling my legs up is to increase my communicative capacity. Despite appearing guarded and closed, by regulating my sensory and emotional world in these ways (eye contact is stressful and exposing at the best of times, and increased touch/proprioceptive input over more of my skin is calming) I am trying to con my body and brain into thinking they are safe and that it is OK access the important and very personal information and then to try and give that to somebody else.

The long pauses and short answers are testament to the difficulty I contend with to produce even the little information I am giving. They don't mean I don't want you to know. They mean it's even more important that you do know. They mean I know it's important and that's why it's more difficult for me to get it out. I need extra time, more clear and specific questions, understanding. (Although sometimes I might not be able to tell you because you've asked... that's a different matter and you'll probably receive exceptionally clear "I don't want to talk about this" vibes, even if I do want to talk about it but can't right now because you've just asked!)

So, the observation that I am needing to feel safe and I am not communicating is absolutely valid and a useful indicator of mental state, but it is easy to misinterpret these presentations as implying a wish not to communicate instead of the very real and painful need to communicate. I would hazard a guess that this doesn't just apply to me.

The thing that got me was that I wouldn't have known I came across that way unless I had read those notes, and it makes me sad to think that people might interpret my behaviour that way. Think of the potential impact of a lifetime of that kind of misunderstanding on someone's social life. And wellbeing. If I cross my arms it's because I need some more physical feedback, not because I don't like you or don't want to talk to you.

To dare to expose something real and important about oneself - a wish, a choice, a need, a feeling - is a terrifying, monumental task (when I finally finish the book I'm reading about 'Exposure Anxiety' I will write a big old post on it!). For some context, consider that my brain tells me that a blink of the eyelids or a pressing together of two fingers may even be an immoderate display of emotion; anything more could be an unforgivable betrayal of the insides. Please don't misinterpret my efforts to battle the anxiety brought on by even contemplating such a task as outing the ins.

So when you next see some communication expressed, question its intention rather than assuming what you would naturally infer. Use your knowledge of the person and their nature. You can try asking if you're not sure. We may or may not be able to answer. Maybe we'll write a blog post about it later.

"I find you a calm person to be around"

I thought I'd share with you all something my Brian has been playing with that rather amused me. It was funny because it happened during the week about which I wrote my previous post.

Several different people commented to me about how I am a calm influence and a calm person, and relaxing to be with. This brought an inward chuckle as I happened to have been dealing with an increase in anxiety, disordered thoughts and feeling overwhelmed. I know the comments were based on longer-term relationships than just the last week, but it did make me think because at least one of them was about one day in particular, and a day when I was feeling anxiety and was doubtful of my ability to cope!

Now I must admit that all of these comments came from colleagues, and therefore in a place where I do tend to be performing and making an effort to be at my most functional and presentable. But bear in mind that these are all also people who have seen me at my worst, when anxiety is playing its game well, and they still see me over-all as a person who spreads calm.

I was really pleased to hear that this is one way that people experience me though. One thing we can never do is perceive ourselves as others do. We spend a lot of time thinking or worrying about what others think of us, and our flaws and shortcomings can seem like our main characteristics when we look through our own eyes or imagine what others see, but my discovery this week is that we really can never know.

This makes it especially important to reflect back to people the things that we appreciate about them. It was perspective-changing and warm to know that other people can genuinely get something positive from being with me, and that they're not just saying it because I asked or because they know I benefit from positive feedback: the context was each time not about me but about somebody else's needs that I could provide for. So let people know how they benefit you!

Aside from the warm fuzzies though, I was a bit bemused that calm is a characteristic that apparently exudes from me. I am often troubled by anxiety. It invades my dreams, I have to live by lists to try and keep the zooming thoughts tethered in some way, I really struggle in social situations or when I am out of my comfort zone or put on the spot.

I came to the conclusion that there are a couple of contributing factors to my apparently calm aura, most of which can be linked to my autism (entertainingly, as that is also the source of much of my anxiety!):

Processing time

Until recently, I never considered that I may have any processing issues because my language skills have always been fairly advanced. I am very grateful for this as it allows me to understand and take part in the world, but am finding now that it can mask delays in my understanding, interpretation or processing of situations. I find it very difficult to answer questions on the spot if they require more than a simple factual response (frequently my brain is working on such questions for hours or days afterwards, when I may be able to form an answer that actually reflects my true thoughts or feelings on a matter). Sometimes it is only once a conversation or situation has moved on that I realise what somebody actually meant if they were speaking figuratively. 

The emotions of a situation do not tend to hit me as it happens (sometimes they don't hit at all, sometimes I don't recognise them and sometimes they hit at a random unrelated time and it takes me ages to figure out what they are about). I am learning to stop and think through when something emotive has happened in order to identify my emotions and allow myself to feel them. This probably sounds a bit strange and unnecessary (why bother feeling things, especially painful things, if they don't ask to be felt?) but it seems that even if I don't consciously feel them my emotions are still there in my body and brain, contributing to my general stress levels, but in an even worse way because they are unidentified and not dealt with so they don't disappear. Intentionally getting them out to examine them keeps the old Brian tidy and helps to reduce overload and destructive coping mechanisms.

After all that waffle, what this means in the "exuding calm" situation is that I may not have really processed what has happened/is happening and it is unlikely that I have felt any reactive emotions regarding it. I can therefore respond in a calm and functional manner, dealing with the facts, logistics and problem solving (providing I have the imagination to see the solution, which is another matter entirely...).

Source of anxiety

Although I deal with plenty of anxiety, the sources that tend to trigger this for me are likely different from those that trigger the majority of people. Other people's problems do not stress me out (I care about them, but don't tend to feel anxiety about them). Children spitting in my face or biting or scratching me doesn't stress me out. The things that cause me anxiety are thinking I have done something wrong or displeased somebody, any perceived failing on my part, injustice or people being treated badly, and sometimes changes to routines or expectation. 

Of course other people share these sources of anxiety, but the things that don't cause me anxiety mean that in situations that many find highly emotive such as day-to-day experiences in my work, I can respond with less emotion and anxiety. I don't feel bound by the social "norms" that dictate that yawning is rude because it says you are bored (it is a natural bodily reflex...), farting in public somehow means you are revolting (again, a bodily reflex), or not looking into somebody's eyes means you aren't listening or don't respect them (or maybe you're just trying to concentrate on what they're saying...). If a child spits at me it is similar. I don't experience that personal offence that most people naturally feel (again, instinctively - they can think it through with the same logic as mine but for some reason my brain skips the emotive/anxiety response here) so I am straight on to "How uncomfortable must this child be feeling in order that they must respond like this. How can I make it better?"

It doesn't always work like this, and especially when I am tired or stressed there are things that provoke that reaction in me, but I find it really useful that often the reason I appear calm is because I genuinely am not bothered by what has happened.

Difference in expressive emotion

This one is pretty simple. With autism, people don't always express emotions in the same way as non-autistic people. So I might be anxious or stressed but not look like I am to somebody who doesn't know me well enough to know how that shows itself in me.

Obviously when it gets to shutdown stage it's generally pretty readable that something is not right, but with my anxiety, from what people say, if you don't know me well you may not know there's anything wrong until it's very very wrong (And until recently and still sometimes now, I also may not know! And am even less likely to be able to tell you.).

So I appear calm more often than I actually am calm, which probably helps with people feeling relaxed around me. We all feel more relaxed around someone who appears relaxed, right?!

Intentional masking

And in case not feeling emotive or anxious or not appearing to be even if I am feeling it doesn't account for my calmness entirely, we have to add the fact that I do still intentionally mask sometimes. This was how I was able to take part in the world with a largely convincing performance of "normality" for so many years before discovering I was autistic, so it is a natural thing for me to do at times. I do it to maintain my credibility in a professional context and also in social contexts. If I want to be treated like everybody else I have to act like everybody else and I am glad that I have the skills to have this choice available to me. There are people in whose company I mask much less, if at all, and there are environments in which I am largely putting on a performance in order to participate. Positive or negative, that's how it has always worked for me.

How exhaustion and stress affect autistic "symptoms"

Having had a bit of a manic week (with another one to come), I have been forced to observe the effects of being overtired both physically and mentally on how my autism presents.

I have often noticed, and it is hardly surprising that in case, life isn't already hard enough when circumstances are difficult, our brains and bodies seem to think it's a great idea to join the party and make it even harder.

This is clearly not just an issue for autistic people as it is natural to find our coping resources depleted when we do not have time or energy to engage in those things that normally keep us well in body and mind. We all notice that it is harder to maintain an even keel emotionally, to make good decisions, to look after ourselves and others when we are tired or stretched, but I wanted to talk about the specific effects it has on my autistic traits, in case that is new or of interest for anyone.

So without further ado - differences I have noticed this week:

Sound sensitivity
Being around a lot of noisy people, or a particular sound that normally I can cope with I have found overwhelming this week. When this happens I can't see a solution/escape and feel trapped which makes me even more panicky and overwhelmed. Being aware of this helps as I can sometimes rationalise and stop to look for a solution. Otherwise, sometimes one is provided by somebody who has picked up on my situation (a lovely person did that once this week!).

Lack of social filtering
I become more abrupt and less filtered in what I say. I forget to be socially acceptable and just say things as I see them. This can result in people seeing me as rude (understandably, as I probably am being rude!), weird or snappy, which is sad for me.

Tactile sensitivity
Labels in clothes that I normally don't mind begin to bother me! I also seek more regulatory tactile sensations such as my blanket, BFRBs (body-focused repetitive behaviours) etc.

Increased intolerance for change/error
Fairly self-explanatory. Change, the unexpected and people doing things "wrong". If I can buy some extra processing time this can sometimes be managed, otherwise the upheaval of trying to readjust my brain to accommodate the anomaly can lead to overload or use of negative coping mechanisms.

Increased intolerance for failure
Any perceived error on my part can also easily become overwhelming. The thoughts can easily lead to overload or use of negative coping mechanisms, feeding into my mental health disorder and trying to bring me back into destructive cycles of thought and behaviour if I can't engage in some CFT (compassion-focused therapy) techniques or counter the thoughts with something believable but less unkind.

Decrease in emotional regulation
Again quite obvious. It's much easier for me to become dysregulated by any little thing that may happen, and harder for me to bring myself back to functionality. I'm much more likely to have shutdowns or need extra time to use soothing methods and keep myself calm.

Decrease in ability to communicate
Even if I can cognitively rationalise what is happening, I am much less able to convey that to somebody else. It's like my brain shuts down that possibility so that even if I want to, I can't just tell somebody that I am having a problem and what that problem is. It's as if that is just too much, too big or important, or it would dissolve me or something. It's rather difficult to explain, actually.

Decreased capacity for being with people
People are just too exhausting! Because of the energy it takes to be with people, to think of things to say, to make sure they're acceptable things, to try and make sure I do all the right things in a conversation (answer questions with just the right amount of details, ask questions, but not the exact same ones, use the right level of formality of language, don't do anything stupid with your body, finish the interaction correctly, etc etc etc), when I am tired or my brain is full, I just don't have the capacity for much of this.

Bad sleep
It's very rare for me to sleep badly. I am the one who will sleep through anything, always struggles to wake up in the morning, steals all the duvet and kicks/generally bashes about Mr Peggy each night! But this week I was plagued by anxiety dreams, and a strange brand of them too, not just the usual ones but ones set into a nice life-like situation from a few years ago to make it particularly hard-hitting and the effects longer-lasting into the day (my usual anxiety dreams are about waves, tides or being late for things. Oh, and sometimes teeth falling out!). I also unaccountably woke up several times during the night and one morning even woke up at 5.30 wide awake. This is unheard of in the Peggy household (for me anyway!). And of course doesn't help the cycle of exhaustion.

Processing time
When the stress and exhaustion ramp up or last longer than a few days I also see a noticeable increase in processing time and brain speed. This can range from taking a long time to find words (just everyday ones like "handle" this week!) to taking things more literally than usual or not seeing the meaning of what somebody has said to me. Often it only clicks several hours after a conversation that I completely misunderstood what somebody was getting at! When it's really bad it even affects written communication if things are not spelled out completely explicitly.

There are probably other things as well, but just some quick thoughts, and an apology to all those who have suffered from my various deficits this week! It is frustrating when these kinds of problems come into play because I am normally relatively good at presenting a rough basic level of "socially acceptable" (and when I'm not it's usually for things that are "weird" rather than negative, like carrying a blanket with me or lying on the floor rather than being rude), so people are not used to making allowances for my social communication difficulties and just see rudeness/withdrawal/strange over-reactions. Hopefully the weekend will help, and by the time next week is over I can begin to get back to normality!

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.

Busy Being OK

I can't really be sitting here by a field, the wind in my hair, birds in the air, while the day is carrying on without me. And I am not there. I am supposed to be there. I have a duty to be there, and The Plan was to be there. I can't not be there. Yet the wind in my hair and the pain in my stomach tell me I am here, and so do the tears as they start to fall. It's a cruel twist that the wind helping to calm me is carrying the voices of the local school children playing outside.

There are difficult conversations to be had, and difficult, heavy decisions to be made. The magnitude of the moment is at once a crushing heaviness and a weightlessness of incomprehension. For now, all I can really understand are the wind, the flight of the birds, the movement of the clouds, the water droplets on the leaves next to me. The tractor in the field behind me turns the soil. I remember how to breathe again.

Now, with the sun on my face and the wind moving my body, I know that for the minute it is fine to be busy being OK. I will sit here for as long as I need to.

I sat next to a field for two hours. Not quite true. I sat next to a field for an hour and a half, then I did some mindful stretching next to a field for half an hour. Then I went for a walk. I crunched leaves, I followed butterflies, I laid on the earth with the sun on my face. I stopped to watch the water sparkle and the dandelion clock fly away on the wind. I made a moment for the tiny blue wildflowers, I smelt the cowpats and I felt the textures under my feet. I let myself be captivated by the dancing and flickering of tiny white leaves bright among the darker trees of the woods. I remembered me. I am very grateful to be able to do these things, no matter what else I can or can not do.

A Summery Summary

The day is fast approaching when those of us lucky enough to have enjoyed a long summer break will be plagued with kindly-intended enquiries as to just what we did with that break, precisely how much we enjoyed it (it had better have been a lot!), and how we are feeling to be back.

Somewhere on my interwebs the other day this quotation popped up (and yes, I did have to Google Georgia O-Keeffe) and it struck me as a particularly apt summary of my activities for the last six weeks.

As a matter of fact, I have done some lovely things while I have been off, although how much others would value them is probably quite variable! The salient point for me, however, is not precisely what I have done, or precisely where I have been, but the effect all of these factors has orchestrated. *Spoiler alert* The effect has been wholesome, refreshing, and perspective-altering.

Now as the final term of the school year drew (or was seemingly imperceptibly dragged, clinging onto every last moment...) to a close and I battled my way through fairly crippling anxiety to prove that I could do this thing and make it through, I was of course aware that my view was maybe a little skewed and that I had lost sight, or at least reach, of some of the things that matter. I'm not completely naive or blind, and I knew I could do with some rest and recuperation. In my dear brain this is not a possibility in term-time, when I "should" be at work regardless of whether I am in a fit state, (I'm sure they'll take well to the suggestion that my personal development target for the year be to start taking days off sick...) so in the summer holidays I can finally really relax and let go without feeling that I'm letting anyone down or neglecting my duty. (A duty which I also enjoy. This was one of the worst things about last term/year: finding my enjoyment being stolen away by the difficulty of navigating each day, and knowing the effect that this must have on those in my care. How I clung onto the moments of joy and peace that were found together with children in those days.) In this long holiday I also have enough time to completely adjust to the change in routine and therefore enjoy the full benefits. In a week's holiday it takes about 4 days either side to adjust to the change, and so I get about one day in the middle of proper rest.

Is it worth it?

So, onto the matter in hand. As I left the car park on the last day of term I waited for the rush of achievement that I'd made it through: I'd done what I set out to do, and yes, I may have had to be picked up a few times along the way and had to take some measures to make it manageable, but I had done what needed to be done. The rush of achievement never came. Which I can now see with a slightly removed perspective, shows that I really had pushed it beyond the point of sense. I was so washed out that although I had physically completed the task I couldn't take any pleasure in it.

It's not all gloom and doom, though! Things started to look up from that point. I have learnt from each previous year's experience that it is vitally important how I sculpt my six weeks off. One year I did way too much and didn't have enough moments of down time. That's probably one of the reasons I got poorly in the first place. The following year I determined not to make the same mistake again, and left a nice big empty space after my engagements. Turns out that's not ideal either! This year, I think I finally hit the sweet spot. I alternated a few days to myself (usually about four or five) with more socially intense periods (also kept to a few days each mostly) of really positive interactions for me.

They are pretty cute after all...

This was absolutely just what I needed. After a few days I managed to adjust to not being at work and that stressor gradually left my body. I spent time with my family, time dancing (a perfect arrangement of four or five hours of dancing daily, small windows of socialising through the day and evenings completely alone), time visiting very dear friends and rare time away with just me and Mr Peggy. All in manageable chunks with suitable recovery (and ballet/movement classes/therapy/cuddling guinea pigs!) in between.

Time with the different important people in my life gave me not only stimulating conversation but the chance to reflect on how things have been and look at them from different viewpoints, and to re-appraise where I place the value in my life. Spending time with others whom you don't often see and living in their lives for a few days highlights the different possibilities for how things can be that you don't necessarily see when stuck in your own day to day routine. Space away from the daily close-up focus has really helped.

The sea is always a good place to
blow the cobwebs away

Not only have I had time to reflect, but I have had time to rest. Just to be, and not have to do, to follow my body when it tells me to be still, to move in play or to move in work. Often when stuck in the busy I worry that if I listen to my body when it tells me to stop doing, that I will never feel able to start doing again (clearly I am not entirely unaware that I am doing too much...), but this has not been the case. It really has shown me when to do what, and I have found that both liberating and reassuring. I feel much more at peace, much more alive, and much more me. I am no longer a ball of overwhelmed, but by waiting myself is beginning to be myself again.

Let's see what happens when the focused waiting time is over.

Awkward from the inside: what it's like being the person who looks awkward

Sometimes I think things are going pretty well and I'm managing OK, and I was just thinking over the last week or so how I was really pleased that although I am tired and busy I've not been feeling too 'autistic tired.'

Then along came today and reminded me that really I am autistic, and I'm just not like other people, and I can't do the things they do.

Two events during the day reminded me of this, the first coming straight away when I got to work. One of my colleagues has been going through an absolutely terrible time with some really sad and traumatic stuff to get through, and she started telling about it mostly to my other two colleagues (she knows them well, but doesn't really know me as I only started there a few months ago when the stuff started happening, so I don't feel I can really ask about it) while I was also standing nearby.

Well, I have so much empathy for her, I just want to be able to say or do things make make it better for her, or at least for her to know that is my intention. But I have no idea of the things to say or do. I don't know her well enough to go and give her a hug, and she hasn't told me personally about any of it, which I wouldn't if it were the other way round, but obviously she has talked about it when I'm there so I know about it. I didn't know whether I should go away and busy myself with another job so she could talk to them, or whether I should join them, I had no idea of anything that would be the right thing to say (luckily the other two had loads of great words) and couldn't give her a hug or anything.

I think this is how the whole empathy thing plays out in real life for me. I care so much, and I understand others' pain, but I am often incapacitated to do anything about it, unless I know the person very well. So it looks like I don't care, which is just the opposite of the truth. Or even worse, I could make it worse by being awkward, so I try not to do that, and not to give the impression of being uncomfortable, because that's the last thing someone in that situation needs.

I wish people could know I want to be with them in their sorrows and trials, their downs and ups, and I want to help. Maybe one day I'll learn how.


The second situation was a celebration for a colleague I barely know, with basically all the staff present. Painfully awkward from beginning to end. I stuck myself like glue to the two people I work with and copied them. Where do I walk? Where do I sit? Quick, bag a seat next to person I'm hiding behind. Shouldn't have my back to anybody, but have to here. Who should I have my back to? I can't just do nothing, must follow them to get cake or people with think it's weird if I don't eat anything. Accept a drink, any drink - it's too difficult to choose and you're weird if you don't have one. Just say anything's fine, or "surprise me" (not "whatever": that's rude even if it means the same thing). Listen to the conversation, focus, stop zoning out and examining your fingernails, don't rub your nails on your face, make appropriate noises and faces so people don't notice you haven't said anything. Safer not to say anything even if you wanted to: it might go wrong, people will look, it won't come out how you meant, people won't know why you even said it. It might stop the conversation. So just make the noises and faces. How soon can I leave? How do I get out? Who do I need to say goodbye to? What do I need to do with my glass and rubbish?

And go home. To an empty house: I need that right now.

What is AS for me?

In no particular order, here are the things that AS means for me in my life.

Uncertainty is a huge issue for me. Maybe the biggest. If someone says "maybe I'll do this" I will spend the next indeterminable time period repeatedly going over the options of what will happen if they do or don't do that thing; how my day will look, what will I need to expect, what will I need to be prepared for, and I will be constantly questioning "does that mean they will do that, or they won't do it or they themselves don't know yet (in which case, again will they or won't they end up doing it?)", trying to work out the probability of each of the myriad possibilities of how the day will run. And the thing they are doing could even just be "I might go and buy milk" or "I might make a cake." If there is any uncertainty at all, the issue will remain in my mind as unresolved, like a flagged or unread email, demanding attention until resolved. If there is any emotional involvement with any of the options the chasing of thoughts escalates and often comes out physically in my body as feeling sick (if worried) or in repetitive gestures like finger wiggling or fist clenching if excited (though I think I manage to keep these down to only in private).


Another aspect of uncertainty is uncertainty of people's expectations. I need clarity in what is expected. I am very happy to do a task for you if I know exactly what you want, but if there are options and I have to guess, it becomes very stressful for me. If I know something is expected but I can't deliver because I don't know what or I don't have the skills, the situation seems inescapable to me and this has been the trigger for quite a high percentage of my 'shutdowns' or whatever you want to call them. The same applies to what is expected of me in a certain situation, for example when I am unsure what or how much I am expected to say, whether somebody is expecting a reply or whether they are making a joke.

Change is difficult to deal with. This can be change in my surroundings, like a rearrangement of furniture (even just a turning around of something on the work surface. Why? Why change things if they're fine? It's all wrong now. Something inside reacts and I don't even know what. It's like my whole world has been turned upside down. I can't work out what it is that I feel, but it's wrong. If someone can explain a reason for the change: e.g. "it makes more space on the surface" this can help) or a change in my expectation for the day. I think this could be linked to uncertainty, because if one thing has changed, how do I know I can rely on anything else to be as expected? As a side note, for me, big changes are often easier than little ones. This is probably because they are usually less sudden, more thought through, more expected and more prepared for. Somebody parking their bike in "my" space is completely unexpected, hits me just when I'm preparing to settle down into my own safe world after people-ing, and makes me want to cry, and sometimes shout and bang (again, why would someone do that?). It takes a while before I come to terms with the fact that I could park my bike elsewhere, and even then that space is wrong and my insides are wrong.

Searching for something else I came across this scale. I wish I could use it to show people how I feel about change. Sometimes I am at least a 7 on matters where other people may not have even realised they have made a change.

Inconsistency makes me all wrong as well. How does it not stick out like a jack-in-the box popping up in your face to people? It might be spelling inconsistency in a document or inconsistency of policy/treatment of people (this is touching on unfairness, which is entirely inexplicable and unacceptable for me), or things moving about (where has someone decided to keep the washing up liquid at work today? Why can't it just live in one place?!), or people saying one thing and doing another. I want to scream and shout "what are you doing? How do you think this is OK?"

The Plan is everything. The first thing that happens when my brain switches on in the morning, before my eyes open or I think about anything else, I work out what day it is and what is happening that day. I flash through what to expect, whom I will see and interact with, roughly how those interactions will go, what I need to take with me and wear (this I will have prepared the night before). Sometimes I know there is a question mark about something, for example, I am going to work but I don't know for sure whether we will be swimming in our swimming session or whether a certain child will be poorly. If I know there is a question mark, I can deal with that, but if something changes unexpectedly that can be more difficult, depending on the change and its implications. The most difficult ones are changes that affect my 'down time' or 'me time': if The Plan was to have the evening in alone and this changes, for example I have to go out unexpectedly, I will be quite stressed about it.

If somebody suggests something that isn't in The Plan I tend to automatically react in the negative. Don't be ridiculous, of course we can't do that. If I have time to adjust, however, I might come round to the idea. Which brings me to:

Time.  Because The Plan is so important in keeping me calm and functioning smoothly, I need time to adjust The Plan in my head if it is going to alter. Some changes I can write in fairly quickly; others can take days or even longer. If you want to go out for lunch, giving me at least a day's notice is probably a good guide.

Also under time, I need regular time to myself. I think of my stress levels, or busy-ness levels (maybe arousal levels in scientific terms?) on a scale, maybe 1-10. On a normal day at work I'm maybe on a 5; a big social gathering of people I don't know would be a 9 or 10. Relaxing at home with my husband is one of my favourite things and bring me down to maybe 2, but the only time I'm 0 is at home on my own. I'm completely me, just being, and that needs to happen a couple of times weekly to allow me to manage the rest of the time.

I also need time to get to know people and feel comfortable in situations. I probably won't call you a friend until we've spent quite a lot of time together and shared quite a lot (and I don't share with just anyone!). I have to learn to trust people and learn whether new situations are safe.

I'm pernickerty, picky and fussy about a lot of things that seem entirely insignificant and baffling to other people. Also on being fussy, certain textures, smells, sounds I really dislike. They don't usually cause me physical pain but make me want to shout or cry or flap and stamp or shake the feeling off my fingers. Bad grammar makes me twitch and it's hard to not say anything about it. The washing should be hung up just so, every fact should be accurate and precise (my memory is annoyingly better than a lot of people's, so when they recall a past event wrongly it's very bothersome, and vagueness is just messy in my head). Things should be where they belong, our days should run according to the timetable in my head (The Plan, I suppose), and everything should be predictable.

Related to this, I can be a bit of a perfectionist. If I'm going to do something I want to do it properly, to the best of my ability (or better, quite often!). This means I can often be unsatisfied with my work or not seem to value it or take pride in it, whereas it may just be that I'm not quite satisfied that it was perfect, or I'm disappointed that I couldn't make it as good as I wanted. It can also mean that I'm not the quickest worker on the block. The job might take longer but it will be thorough and accurate if I have my way. I also struggle with guilt when I think I could have done something better and this goes for relationships as well as tasks.

I'm honest. You can generally rely on me to tell the truth. Usually whether it's wanted or not. I try and be socially acceptable in this department, though I don't get it right every time. But I won't lie to you and will always give my honest opinion. You can rely on me to be loyal to my friends, do my best to do the right thing, be fair, and look after the underdog.

Not me. I only dream of such an attitude!

I have some interests. I'm quite interested in them. I like to spend a lot of time pursuing them. They are calming and predictable and very enjoyable. I find it difficult when I can't do them.

I am very caring. I want to look after people and for them to be OK. I hate it when people are mistreated or sad. It doesn't necessarily make me sad, though it can do, but it is wrong and I feel a very strong sense of care or pity for the person involved. I will be there for the person that needs me, especially if I know how to help (annoyingly, I don't always - understanding and responding to emotions can be tricky - but that has been covered in other posts). Sometimes all you need to do is sit with somebody or give them a hug.

I like animals too. Weirdly, I feel like we sort of understand each other. And they are nice to cuddle and don't ask questions or talk to you. They aren't complicated!

Decisions are difficult (but there's a separate post for that). I see so many aspects to consider, and so many pros and cons.

I sometimes get overwhelmed (by my or others' emotions, or by a lot of social effort, or something unexpected) and need to get away. If it's too sudden, I might have a bit of a shutdown, which for me often includes crying and shaking. I can't talk to people and I can't look at them for a while afterwards (my eyes are usually shut during most of it). If it's not bad enough to cause a shutdown (which thankfully I don't get too often), I can take some time to myself at home alone and watch some TV, read or think to recover. Sometimes being outside in nature alone can serve the same purpose.

I look at language a bit differently. I rather like it, and sometimes I like to play with it. I understand most simile and metaphor, and quite like them really, seeing them as a bit of an art, but I often take things literally if I don't recognise them as figurative language. If there is more than one possible interpretation of something, for some reason I don't always see the one most people see first first (my Mum says I always seem to pick the least obvious interpretation). People can think I'm being awkward, but usually it is me genuinely having to search for the right understanding for the context. I like humour and like to make people laugh. I used to be rather a punner but not so much any more, but I still enjoy playing with language.

"As much use as a chocolate teapot" is one of my favourite similes :)

Creativity is something I have a love-hate relationship with. I love the idea, but I'm actually not very good at it and find it quite scary and very pressuring and stressful if someone is watching or expecting a result. This is quite entertaining when you think that my passion until I was about 20 was music, and from then on, dance. I love to do them, but I cannot create them for love nor money. Improvisation always made me feel sick and clam up. I can't compose for toffee. Or even chocolate, which I prefer to toffee. I could never write a story from my imagination: in primary school I dreamt

The story was about an
escaped hamster!

up one story based on true events and adapted it to fit every brief. But I really do appreciate the creative arts. I can get lost listening to music or watching dance and in a room on my own I put creative expression into music or dance where the notes/steps have already been written. Particularly with dance, though, I also appreciate the technical side more than perhaps most enthusiasts. I would watch class with at least as much pleasure as a performance and I don't need a story to enjoy a performance (it can even become overwhelming if I let myself be drawn into an emotional story eg. Swan Lake or Giselle). I find it very difficult to encourage the children in my class with role play and imaginative play because I can't think of how to extend what they're doing.

Nearly forgot about this one as it's so obvious, but social situations are also a challenge for me. The more people the worse it is, the less I know them the worse it is, and the more expected of me/attention on me the worse it is. I worry beforehand about whom I will talk to, what I will say, what I will do if I can't find the answer to either of these, when and how I will leave, whether I will say anything inappropriate, whether I will be boring, whether I will say enough or too much, whether I will look ok, whether I will do any silly things with my body, etc etc. When I am there I am still worrying about most of these things, especially how to carry on a conversation and things like that. A lot of worrying and feeling sick, and I will be tired for several days afterwards if it was a big one. It is just exhausting making sure you're doing everything right!

Help!

Small gatherings of up to 5 or 6 where a family member is at least one are manageable and don't put me down on social energy for too long, and I even enjoy these sometimes.

In addition to the feelings brought on by the event itself I also struggle with feeling guilty for not enjoying an event which is obviously supposed to be pleasant, which somebody has put on for everybody to enjoy and maybe even partly for me, so then I may have to make sure I adequately persuade that person that I have enjoyed it, even while trying to recover from the strain it has put me under.

Even just a break in the staff room or a meeting in the corridor can count as a stressful social encounter: what do I say? Where do I look? How do I finish the conversation? Is it bad to sit and not say anything? Can I make my drink last the whole break/Do I look daft sitting not talking with an empty cup? Is it OK to join in someone else's conversation/nod and smile as though joining in with it?

Communication can be difficult. Although I am a very language-minded person it can be quite difficult to express myself properly about important things. Often I only think of what I should have told somebody or asked them quite a while after a conversation has happened. This can mean I can seem rude unintentionally, I can miss out on opportunities, my opinion can be overlooked (well, not expressed to the relevant party rather than necessarily overlooked by them) and I can become frustrated. Sometimes I don't know what I want to express, other times I don't know how to express it, and others I just can't make myself do it at the right time and place. I work better in written communication where I have time to consider matters, think about my real response to them and formulate that into something that will be understood properly by others.

I am funny and silly and clever and quirky. I have a great time with a few good friends and we enjoy each others' company. I might not be everyone's cup of tea but if we get along we really get along. I stick by my friends and we help each other through all sorts and have a lot of laughs on the way.

These are just the main ways I can think of at the moment of what AS means to me, for my life, but I feel like I could keep writing forever, or at least enough to fill a book! I might update if other important things come to mind. I also have a big list of quotes from a few books (Asperger's Sydrome, A Guide for Parents and Professionals, T. Attwood; Inside Asperger's Looking Out, K. Hoopmann; and Finding AS in the Family - A book of answers, C. Lawrence) that I felt really were pertinent to me when I was reading around before diagnosis, if that is of interest to anybody.