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.

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.

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.

Intense World Theory

I said I would come back to the Intense World Theory that I discovered, so I am finally here to fulfil that promise. The theory is detailed in a paper by Kamila and Henry Markram, 2010 (Lausanne) and proposes a unifying neural model to explain autistic spectrum disorders. Markram and Markram study local microcircuits in the brain (focussing on the neocortex and amygdala) and propose that they are hyper-functioning in the brains of people with autism, specifically displaying hyper-reactivity and hyper-plasticity. (see Introduction for more detail http://journal.frontiersin.org/article/10.3389/fnhum.2010.00224/full)

Which is a lot of big words. Basically, if I am correct, the researchers think that particular circuits in the brain are working overtime reacting strongly to input and remembering its reactions to inform future preferences. That is a very basic summary: really, you're better off reading it from the source above.

The researchers describe four areas of effects of the hyper-functioning microcircuits which impact how people with autism experience the world: hyper-perception, hyper-attention, hyper-memory and hyper-emotionality.

Hyper-perception
Various circuits (differing from person to person, hence the very individual expresssions of ASC) have a loss of inhibition and are therefore hyper-reactive, leading to "vulnerability to sensory overflow. Consequential behaviour would be panic, aggression and withdrawal."                              

Hyper-attention
This sounds as though the brain gets 'locked into' a circuit, where a circuit is activated and then continues to reverberate, or repeat itself and is difficult to interrupt. This brain activity is clearly linked to difficulties in transition and shifting attention for people with autism, and to fixated attention on matters of interest. Also, autistic people "may seem distracted and disengaged, but are actually hyper-focussed on internal processes."

Hyper-memory
Here it is proposed that early learning is strongly imprinted and not easily over-written. Once something has been learnt it is very hard to unlearn, explaining why people with autism find it very difficult to address problems or tasks in a new way. Also, there may be displayed "idiosyncratic, albeit exceptional memory capabilities."

Hyper-emotionality
Quite contrary to many previous models of autism, the Intense World Theory suggests that in autism there is actually an enhanced sympathetic response to social content as well as to novel or sensory rich content and negatively associated stimuli. This is thought to lead to enhanced fear conditioning and avoidance of high-emotion stimuli (eg. eye contact) as well as avoidance of novel environments "due to fear of surprises that arise from over-generalisation of previous negative associations." Behaviours displayed may seem unpredictable, exaggerated, extreme or inappropriate.

The writers conclude that:

"In contrast to other deficit-oriented theories of autism, the Intense World Theory points out that enhanced brain functioning may lie at the heart of autism. In this light, autistic individuals may in general – and not only in exceptional cases – exhibit enhanced perception, attention, and memory capabilities and it is in fact these capabilities, which may turn the world too intense and even aversive and lead to many of the autistic symptoms including withdrawal and social avoidance".

Obviously this is a painfully tiny summary, and quite possibly not a perfectly true representation of the research, so please go and do some further reading and come back with questions! The theory is still fairly controversial I think, but there are parts of it that seem to make a lot of sense to me.

I would say the reason I avoid emotional stimuli is definitely due to being overly sensitive, getting overwhelmed by people's insides and not knowing what I am supposed to do with that stuff or how I can make someone feel better or show them I am happy with them. Hyper-memory I think also affects me quite strongly: I tend to be pretty rigid in my approach to many things (probably much to the frustration of Mr Peggy!), to the extent that I feel like I am doing something wrong if I deviate from my own expectations. The other two areas also add up with my and many others' experiences, so if you would like any more information/anecdotes/thoughts on any particular areas, just let me know!

The E word

People with autism lack empathy. Every layman knows that, right?

Right, but it seems that most people that aren't laymen (let's call them standmen, just for the fun of it) realise that this is often not the case. 

I found this out through a very little of my own research. I wanted to understand why I react in certain ways to certain things, and how what happens inside me can possibly match up with my diagnosis. (Resisting the temptation to rant here about the need for educating people - myself included - beyond the decades-old stereotypes...)

I had made a few observations about myself:

• I get really upset by sad things happening in films. More detail on this later.
• I hate to watch or think about violence. I don't understand why anybody would want to. Somebody is hurt by it and it's horrible.
• Someone can tell me about something terrible and I won't really react inside or out, yet I can be in floods of tears just reading about something vaguely emotional, never mind it happening in an audio-visual format.
• People throughout my life have commented that I don't seem to care about things, but these are actually the very things that strike me to the core.
• If something is important to me, I probably can't look at the person and talk about it at the same time.
• I think I am quite good at sensing people's emotions and I often know what is going on when two people misunderstand one another.
• It takes me a long time to recover from strong emotions, and they have a physical effect on me.

In summary, I definitely have empathy. In fact I feel like I sort of absorb the emotional atmosphere of a room or interaction as soon as I enter, or very shortly afterwards. It can be quite powerful: if there is tension or unpleasantness it makes me feel physically sick - for quite a time afterwards I often can't eat. If I come across somebody sad I want to help them.

But I thought people with autism aren't supposed to have empathy.

If I really care about
something I might look
like this, only less
glamorous.

I am now wondering if maybe it's that I don't have empathy quite like everyone else. Those inside things; the feeling sick, the hurting to help someone in tears, don't show. I don't always know what to do with them, so I don't do anything. Then people think I don't care. Maybe that's what they mean by people 'not having empathy': having so much empathy that you can't do anything with it. It's too much, so you freeze and it's impossible to do anything about it or show anything because if you do it will explode.

If I haven't waffled you to death with rambling yet, I have included below an account of the occasion that got me to thinking about this and the research theory I then came upon which made so much sense to me. Maybe they will help shed some light for somebody.

Finally, as this has been a post trying to collect a lot of partly-formed thoughts, it would really help me if readers ask any questions they have about any part of it: my experience, my thoughts, links to the research I found, basically anything I've missed out that would help to explain to somebody who doesn't have the same insides as me.

Probably more like this. I promise I care inside. So much it hurts.

*********************************************************************************

The particular incident that got me thinking this time came watching the film Ghost. Now, when watching or reading, let's say 'experiencing' something emotive I tend to go one way or the other. In public or a place where I'm not relaxed, I shut off that part of it entirely. I refuse to get involved. I think about other things when it gets dangerous and distract myself. It's safer not to go there.

But this particular day I was snuggled on the sofa with my husband, very safe and had been told the film was romantic. I was prepared for a bit of pulling at the heartstrings and some happy tears (I know I get far too involved if I don't choose to switch it off!). I ended up being completely drawn in and was (silently) sobbing my heart out by the end. It was just so sad. It's making me sad now, just thinking about it. And afterwards, I jumped up and took the dishes off to wash up and went to the toilet until I could talk without a quiver in my voice, hoping that Mr Peggy hadn't figured out what was going on.

I went back to sit with him, somewhat quieter than usual, but able to reply to him. I sat close - I needed touch to comfort me - but after a while I realised I wasn't looking at him. Slowly we started to talk about unrelated things, practical things or funny things and gradually it began to wear off. Later on I could look at him, then later still his face. It was only after a long time I could look into his eyes.

I've half noticed this effect before but never until after the event and I've never paid attention to it, but this time, I somehow registered the progression of what I could do. I'm not sure whether I completely did at the time or if it was afterwards, but it's since happened with another situation I was very upset about and I tracked it through the same stages.

*********************************************************************************

I did some reading about autism and emotion and empathy and things, because my experience didn't seem to add up with my idea of autistic people's emotional life. What I came across was the Intense World Theory. The name sounds a bit sci-fi and I don't know how widely accepted it is, but it made a whole lot of sense of my life. 

It sort of turns the traditional physiological explanations of autism on their head: instead of 'deficiencies' causing all the recognised difficulties, the theory proposes that parts of the brain are 'hyper-functional' (I think I might do a separate post on this!), and one thing this can lead to is 'hyper-emotionality.' 

Basically, this can be people experiencing so much of emotions that it's too much to deal with. Then we get the shutting-off, which looks to outsiders like we don't care. Or if we don't completely shut off, we have to reduce the stimuli - eg. looking at 'safe' things, not faces or eyes, which are much more intense and fill up my brain.

The theory doesn't explain all of my questions and thoughts, but it throws a whole lot of light on my experiences of life. I'll look at some other aspects next time.