What is reasonable?

One of the worst things about being autistic is that I have found I often have no idea what is OK, normal or reasonable.

I always used to think I was pretty objective and mostly knew what was normal, reasonable or accepted. I never really questioned my responses to things, but I think this was because growing up at home my family and few friends were pretty easygoing and pretty similar to me. We never felt the need to dictate to each other how to do things or what opinions to have. We were often approaching things from the same direction and our opinions were often similar, and when they weren't, it was fine to differ and that didn't threaten or offend anybody.

In the last couple of years my experience of different people from different backgrounds has widened, and the proximity I am in with some of them is a lot closer, and it led me initially to questioning, and then to a lot of confusion.

I will ignore questions of fact here, as fact-based disagreements are more a matter of negotiating by tact and I covered this a little in my previous post on memory.

It's opinions, expectations and ways of doing things that are more of a problem, when there is no "right answer" or each party is equally convinced of the correctness of their perspective.

I know that my opinion or way of doing things isn't necessarily the only valid one, and a different way may seem as good to someone else as my way seems to me ("every man is right in his own eyes"), but I also know that I am entitled to an opinion.

I find it really difficult to balance these two points. How often should one give way to another? For many years it didn't occur to me to form my own opinions, and when I did I rarely expressed them, assuming that they were erroneously formed or otherwise invalid. When I eventually developed a sense of myself I realised I was sometimes right when I differed from others and I became able to stand on my own two feet, but I lost some of the gentleness I had before I realised it was OK to be me.

I can't sustain denying or hiding my (autistic or personal - if indeed it is possible to distinguish) opinions the way I used to, but I can't bear the thought of trampling on other people to be me.

So I suppose I am now wondering just how much it's OK to be me. Are my expectations, desires and opinions reasonable or not? Are they any more or less valid because of autism? (eg. I really hate that particular smell, and it's not just a matter of opinion, but how do you explain that to someone else, and if they love that smell, it's surely not fair that I can just say no, denying them something that brings them pleasure.)

I think it works something like this, but how
do you know what is a want and what is a need?

It's all about compromise and negotiation, and everybody having a bit of give and take. The trouble is, I have no idea how much of each and where and when, is reasonable! And there is no objective way to work out how much something matters to someone else either. If something bothers me a little but I know it's a big deal for someone else, it's easy for me to compromise to accommodate them, but when it bothers me a lot, it's hard to know if it bothers them a lot too, and whether I'm being reasonable or not.

When the problem continues despite repeated attempts to explain, then I assume my reaction must be unreasonable and I must learn to deal with the issue, no matter what it costs me. Can anyone tell me whether this assumption is correct?

I think it also depends on who the other person/people is/are. A matter is often easier to resolve with work colleagues because you are less emotionally involved and afraid of offending them, and I think it's understood that people will differ and just get on with things in their own way, which is harder when it's things in your own house with your own family.

I was also going to write here about What is Reasonable in conversation and social interaction, but I think I will split it into two posts as it's becoming a bit lengthy!

So I think there are no magic answers to working out what is reasonable, and that each case is different depending on the situation. That is what makes it such a tricky subject, because there's no objective "fairness" formula and no quick answer. I just hope that as I get older and more experienced, these conundrums will become clearer to deal with and I will get better at accepting other ways of doing things.

Please comment if you have anything to say on this matter - it's a really tricky one for me!

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.

Wish

As a photo never does justice to a sunset, my words are a shadow of what is within.

The special people are the ones who saw, who looked for a way in to what was underneath. Time. They gave the inside me a value, they gave me hope that I was reachable and worth reaching. They saw my quietness in the chaos of many lives.

They help me be the me I want to be (but can't imagine) and let me be the me I am.

Gently find the way in

Hold me

Listen to my silence

Need people, but the people hurt.

I need nobody, too.

Is it worth the payback no-one sees? Payback just for me.

Inside, but I can't get it out. Inside, but I can't get in.

So much, so much inside. I wish you could read me, like a book. You could tell me the story.

Love. Love so much it hurts. No empathy is a lie, a misconception.

I wish

But how?

Memory

I often need a little rant about my memory, but it's the sort of rant you can't really have to real people without sounding like an idiot. I'm assuming real people don't read this but if they do, I hope that they will suspend judgment of me and try and understand what it's like to be like me.

I have a really good memory. I'm not trying to boast (I really hate boasting: other people doing it or me sounding like I am) but it's just a fact that I've gradually come to realise. For years and years I just assumed everyone's was as the same, and it drove me absolutely mad how illogical, inconsistent and plain contradictory people were, and even why they lied. I have come to the conclusion that although we are all some of those things some of the time, a lot of what I thought was that is actually that other people's brain simply don't remember things in the same way mine does.

I'm trying to use this newfound knowledge to stop myself getting so frustrated with people. I'm teaching myself to just answer the question when it's put to me for the 17th (or just second...) time by the same person. I remind myself that when people recall an event or conversation or scene with errors, it's not their fault, their brain just doesn't record conversations word for word.

In this respect it's also helping that my memory is no longer pretty much perfect. I forget things too, and so I can see how it happens to others. I don't know if it's just because I'm getting older (getting on for 30 soon... this could be a whole lot worse in years to come!) or because there are just more things to remember. But this is also hard for me to adjust to because I'm so used to my memory being reliable and being able to recall anything that's happened, that I find it difficult to deal with when I can't remember, or remember wrongly.

Despite the current intermittent failings of my poor old memory, it is still pretty good generally (read here "quite a lot better than most people's"). On first thoughts, who wouldn't want a fantastic memory? You don't lose stuff, you don't have to revise because you already learnt the stuff once in lessons, you don't have confusions because you know what happened in the past, etc etc. This is all very true, and it does make life easier and a lot more efficient in many ways. The trouble comes when you put other people in the equation.

The person with the good memory, if he or she doesn't try to hide it, looks like the annoying know-it-all. It's actually very uncomfortable often knowing that you're right. I find it very hard to let things go that aren't true (unsurprisingly, with the whole autism thing), so even when I stop myself correcting people they can often see it on my face. I don't want to be right, because it makes them feel bad, and it makes me feel bad because I think they think I somehow feel superior through being right. But I don't - I feel worse. It's not anything of my own virtue being able to remember, it's just the way my brain works.

Another, purely selfish reason for not liking having a better memory, is that it's annoying when other people forget! If people move my things, it's a big problem for me, because I know where I had put them, but now I have no idea where they are. I guess if people don't always remember they're used to having to look for stuff. So much time is wasted going over things we should know when we could be doing new things. I used to snooze through half of my AS Psychology lessons because they would go over the same things every lesson, which we'd already covered, so what was the point of listening? Or a current common one, in dancing lessons when working on a syllabus, if the teacher has checked the book and corrected a movement (for example an arm we have been putting in the wrong place), I will retain that correction for evermore, but others will do it right that lesson and then revert to the old way. For a couple of weeks it will look like I'm doing it wrong, until they check again and get corrected again, and I will think "that's what we've been doing all along!"

Over the past couple of years, as I've been more aware of myself and my strengths and weaknesses and how and why I respond to the world, I've developed some techniques to try and appear more normal and less obnoxious. Maybe some of these will be helpful to people, or maybe you think they are a terrible idea. Let me know!

Question and get someone else to find the answer you already know: In the above situation of the dance lesson, I have worked out I can ask "is the arm there in first or fifth?" without sounding like I think I know best. Phrases like "I'm sure we've discussed this but I can't remember whether it was... or... Can we check?" or "hold on, did/didn't we do it like this last week?" (but if they say no don't insist we did!)

Just pretend you don't remember: I don't like this method very much because it's not really truthful and as I mentioned, I really like the truth. But it can be a useful method of not sounding like a pedantic annoying autistic person. Using this method a few times can dilute the unnerving impression of someone that remembers everything to an annoying extent.

Pretend you're not sure: add a disclaimer/say your statement in a slightly questioning of British-ly apologetic manner, for example "I had the vague idea it was this but I'm not certain/don't quote me on that/I'm not sure where I got that from"

Just let it go: I think I need to learn that sometimes it doesn't actually matter. The fact or truth being known may not have any effect on the matter in hand and you may sound like an idiot if you insist on it. But it kind of goes against the grain even writing that, because if people aren't at least truthful and factual to the best of their knowledge, what can you trust and build on? So I think I'll have to work on that one.

Keep your mouth shut: this was the method I adopted until the age of at least 20. I never spoke up about anything. I just assumed that other people knew better, that my opinion or experience was irrelevant. The trouble with this method is that you can end up with a very negative view of yourself, and all the good gets hidden away with the bad so it doesn't benefit anybody else either.

I'm now trying to find a balance of re-finding my old silence, because sometimes it is wise to stay silent (but I need to get control of my face and body for that to work!), and being tactful in finding ways of getting facts into matters where they do need to be known. And of course I'm working on not getting as frustrated with others and myself forgetting, because it is a human thing that happens, not people's choice. We can't magically implant correct memories so we have to be patient with what there is, and everybody accepting they can be wrong is a step in the right direction.

I should mention, this is long term memory we are talking about here. My short term memory can be shocking. I have trouble keeping track of everything I need to do so I live by lists, and if somebody at work asks me what happened yesterday I might have to think really hard before answering!

As always, please feel free to ask questions or share your own experiences :)

Chris Packham: Fingers in the Sparkle Jar talk at Hay Festival 2016

I never really felt wholly connected. I didn't really understand them, I didn't understand the way they, sort of, worked, as it were. I understood the way animals worked, I was beginning to understand that at least, but I didn't understand the way they worked.

I was in a world of one and they were going to their parties, and doing things, and girls wanted to snog boys and vice versa, or not vice versa as the case may be, but I just wasn't there. And I was initially very confused and frustrated and angry, very angry. I didn't realise, I couldn't identify, I thought I was wrong. I thought there was something wrong with me. Why didn't I fit it?

One of those, my Biology teacher, I wouldn't be having this conversation with anyone today, if it weren't for his energies and direction he gave me at the time. He seemed to identify my obsessions and think they should be put to good use.

I was always getting caned for saying what I thought. I mean, if the teacher had BO.... she did have BO! Why wouldn't I say that? That didn't compute with me. But it didn't compute with her either.

I see it all with I think what to many people would be an astonishing clarity. I remember all of the details in the book, you know, visually very powerfully and brightly and accurately I think.

With a power of observation like that, and a pen like that... why you don't turn it on any human in the book.
Um, I suppose I like animals more than people.

[Relationships with animals are] very strong and they're very trusting and they're very complete, and perhaps more than most of the relationships I've had with humans.

There is no competition between myself and them.

I genuinely enjoy coming second to a tiger. It's a privilege to share my life with both of them... I feel a great deal of comfort in the fact that that bond between her and her animal is more powerful perhaps than the one we have between us.

Initially it was very superficial. When I first picked up ladybirds and I put things into jam jars it was the perfection and the sheer beauty of them...
As I grew older and I began to understand how the natural world lives in this remarkable, complex but dynamic harmony, how everything integrates and has a place. So the starling isn't as beautiful on its own... It's more beautiful when it's connected to everything that it plays a role in. Where it's eating something and being eaten, when it's shaping that community. And at that point the human species was left far behind, because we don't do that. Everything we do upsets that natural harmony and disturbs it, damages it and destroys it. So my liking at that point for the human organism failed considerably.

At the time I was immediately struck by a difference. In the way [the people of the Sumatran hunter-gather tribe] that they behaved, that they moved, that they carried themselves, their whole attitude. Everything that came out of them... was different... It was only afterwards that I realised that what I'd sensed and seen was that these were perfect people. They were in harmony with that environment. And when they moved they moved through it with a grace that I'd never seen anyone move... And the way that they interacted with us, without wonder, awe, without any jealousy or envy for the trappings that we have... They had an enormous self-confidence because they were fitting, the fitted into that environment. So I saw perfect humans once, in Sumatra.

We have the ability to rectify so many of the things that we've done and are doing wrong... but unfortunately we're not implementing them. And this makes me again, enormously disappointed in humans.

So we will solve this, but why smash it up to start with? Why not build on what we've got left now. So I'm very frustrated with the human species.

Yeah. I have. Perhaps not quite with the same intensity as that kestrel. I think there was a mark left by the bird and its loss, which hasn't ever really been addressed. But yes, I have had other animals that I've lived with and lost that I've found pretty much the same. Both while they're alive, the immense joy at being able to spend time with them, share my life with the, and the irrecoverable loss when they disappeared... I'm not fearful of it. I think that you give everything, you take everything back. So I wouldn't not culture more of those relationships in the future... I know that when you get on that train, it's going to be derailed at some point.

Killing for no reason is not something you ever see in the natural world. There's no other species on earth that will kill something else unless it has a reason to do it... but we will do it without any... I still struggle with killing things for no reason. It doesn't compute with me.

The book essentially is about how we develop an appreciation for life and try and develop an understanding of the role that death plays in life.

Because we don't know when we're going to die... we never think it's going to happen. We think life is limitless, it just goes on and on, and this means we don't count rainbows, we don't feel things as profoundly about thinkgs as we should, because we think we can do it tomorrow.

I had things dying all around me, I was reading about extinct creatures, the dinosaurs, and yet it was always "when you leave school, Chris", "when you go to University", "when you grow up", "when you have a family" and it was like, "hold on, that may not happen, because it didn't happen for those tadpoles. They didn't even get to grow legs, let alone go to University!" So I've always been confused by our reluctance to address death, and I think it's because we don't know when it's coming, and if we did, I think we'd have a much healthier outlook towards it.

How did it all come right? One of the most instrumental aspects.of that was punk-rock. I had got to a point when I was sixteen, in '76, when I'd realised that I was different from everyone else and that I really couldn't connect with them and I'd become very angry with them for excluding me. And then all of a sudden there was this immediate device of being able to identify very clearly to everyone else that I wasn't like them. I liked the music... and the ethos... It was very clear to me to say certainly to my peers "I'm not one of you and I'm pretty pleased about it" and so it was an ideal separating mechanism. It didn't solve all of the problems: I still thought I was the one that was wrong, but it was an ideal way to show other people that I wasn't part of their world.

Anger needs to be used for a purpose. It needs to be used creatively, so you have to turn that into a way of making progress, whether it's personal or other. And I still stick with that now. I do get very angry about things, but the anger now is directed at trying to come up with a solution, rather than scream and shout, spit and wail and make a terrible noise with a guitar.

I'm not ever satisfied... I think that that is a useful fuel, dissatisfaction, and I do fear contentment. And I think for me, I worry about contentment breeding flabbiness and lack of energy and direction. And happiness is something that I don't think can be sculpted. Happiness is perhaps something which comes fleetingly, when it's unexpected, and it has to be treasured and again that goes back to that thing I was saying about knowing when you're going to die and how much treasure, and how much weight you should put on circumstance...
I began to understand that things like that don't last. They can be fleeting and they must be treasured. That's why I get up every morning and I run with my dogs... and I enjoy every moment... because that may end at any moment. So happiness is something that I don't try to make, but if it happens, I don't waste.

What I don't understand

Why people want to hurt people, or things
Why people want revenge and repayment
Why people lie
Why people don't value truth, beauty and real love - wanting what's best for someone else first, what will make them happiest not you


What I think most people don't experience as I do:
Nature - water, sky, trees, wind
Animals

Anniversary

Make you smile, watch you sleep, love you when you weep
Hold hands and hold hope
To know me inside out and back to front to know you
How to hurt and how to heal
See that it is good

Hold hands all the years

Close

Sometimes I need to be so close I can't look at you

I'm safe when you touch me; it'll all be ok
Hold me tight, and muscle tension flows away

Sometimes we know each other better than ourselves. Sometimes can't fathom at all.

I can't always look, but you need me to

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!

Decisions Part II - links and research

When I consulted the oracle Google on the question of whether other people with ASC experience difficulty with decision-making, I was surprised by the huge number of results. Many others in my position had asked the same question on online forums (www.psychforums.com/asperger-syndrome, asperclick.com, wrongplanet.net) and received not unanimous responses, but a high proportion of people echoing difficulties with making decisions and the stress caused by this.

I came across further anecdotal evidence on a couple of good blogs I discovered through this search. https://aspergersandmeblog.wordpress.com/2014/02/20/how-do-i-adult-making-decisions/ has some good tips for people with AS to assist in decisions, and the blog 'Musings of an Aspie' has a whole series on 'What I want' as well as some single posts on decisions that I could have written myself (if I were as eloquent!): http://musingsofanaspie.com/2013/07/29/what-do-i-want/
http://musingsofanaspie.com/2013/02/21/my-no-reflex/
http://musingsofanaspie.com/2012/09/05/when-all-you-can-draw-is-a-blank
And to top it all off, I did manage to find a couple of academic studies in the area. One I sadly couldn't access due to copyright, but was conducted by Lydia Luke, University of Cambridge: 'Decision-making difficulties experienced by adults with autism spectrum conditions'. The abstract states that:

Autobiographical and clinical accounts, as well as a limited neuropsychological research literature, suggest that, in some situations, men and women with autism spectrum conditions (ASCs) may have difficulty making decisions. Little is known, however, about how people with ASCs experience decision-making or how they might best be supported to make decisions for themselves. In this study, we compared the decision-making experiences of adults with and without ASCs (n=38 and n=40, respectively) using a novel questionnaire and the General Decision Making Style inventory (GDMS, Scott & Bruce, 1995). The participants with ASCs reported experiencing several problems in decision-making more frequently than the comparison group, and were more likely to report avoidance of decision-making, as measured using the GDMS. The findings highlight areas of potential future research and inform suggestions for supporting adults with ASCs during decision-making.

Sounds interesting. The other research I found was conducted by Lee A. Wilkinson (http://bestpracticeautism.blogspot.co.uk/2013/01/decision-making-problems-in-adults-with.html)

The results indicated that compared with their neurotypical peers, the participants with ASD more frequently reported difficulties in decision making. Decisions that needed to be made quickly, or involved a change of routine, or talking to others, were experienced as particularly difficult, and the process of decision-making was reported to be exhausting, overwhelming, and anxiety-provoking. The participants with ASD reported significantly higher levels of anxiety and depression and were more likely to believe that their condition interfered with rather than enhanced the decision-making process. Not surprisingly, the participants with ASD were also more likely to report that they avoided decision-making.

...

These findings are consistent with previous autobiographical accounts, known features of the condition, and previous studies of decision-making in ASD... Despite limitations of the study (e.g., self-reports), the results are consistent with suggestions from the literature relating to decision-making for people with ASD. Importantly, they also have some practical implications for supporting more capable adults with ASD. For example, it may be useful to: (a) provide additional time to reach a choice, (b) minimize irrelevant information, (c) present closed questions, (d) offer encouragement and reassurance, and (e) address general issues around anxiety. Understanding how adults with ASD experience decision-making is especially relevant for family members and professionals who are involved in providing support to help these individuals achieve greater self understanding, self-advocacy and improved decision-making in lifespan activities such as employment and personal relationships.

It seems I am definitely not alone then, and that this issue may well be part of the AS, not just me being mindless and pathetic. Bit of a relief, really. Now how to explain this problem or get people to support me in it without telling them about AS... that could be a tricky one. After an issue last week, I am wondering whether I should tell work, but I'm not sure how they'd take it - it seems to be a fairly "fend for yourself" environment, and my colleagues are very aware of severe needs so may discount my milder problems. Will have to ponder on that one.

The D word

Anybody who knows me knows I have a problem with making decisions. It's far more long-standing than my diagnosis of AS and has left me with many rather embarrassing memories.

It tends to go something like this:
Somebody asks a very simple question, such as "do you want to go for first dinner break or second?", or "what do you want to do?", or I have to decide what food to buy in a cafe. Basically, anything where a decision is required on the spot, I don't know the answer and somebody is waiting for it.

Now, strangely, the less I mind about the answer, the harder this sort of situation is and the more stressed and anxious I get. Inside, I start to get worried as soon as the question is put or I see it coming. I start frantically searching for the 'right answer.' Here I am considering all the possible minute implications of each possible decision (to the routine of my day, to my companion's feelings, to my finances, to what is good for my body, to whether Great Aunt Gertrude would put her pink hat on if I chose option x, and whether that would have an impact on llamas in Peru etc etc). If I find a 'right answer' (some kind of deciding factor, eg. "I really fancy that toastie", or "that's the cheapest and I'm poor at the moment", or "the other person will want the big piece of cake so I'll take the small" or "that's got the highest specifications so is the best version") then everything is fine. The choice is made and we all carry on as if nothing had happened.

But if there is no deciding factor to find a 'right answer', we run into trouble. My heart starts pounding and my breathing gets faster, I go bright red (I assume by the feeling in my face anyway!), I start to get panicky and my eyes might dart around. At this point if there's no way out of the decision my eyes are prone to leak. This is very embarrassing in public when you are a grown up! I also might start tapping my fingers together quickly, or wiggling my toes, possibly before the crying stage. I will most likely be very quiet while this is going on. If we're lucky I might manage "I don't know." I'll be feeling very scared and vulnerable. The most recent couple of times I noticed I started flapping my hands and stepping my feet quickly on the spot, or sucking a finger. One time my mouth muscles did a weird thing I couldn't even stop when I tried.

As an aside, these last few have worried me a bit as normally I don't do things outwardly that would make people think there was something wrong, so I don't really know what's going on. I could just be becoming more aware of myself, but I'm reasonably sure I didn't used to do them or people wouldn't find it surprising that I have AS! Since changing jobs I seem to have been experiencing more 'AS symptoms' so I don't know if it's related to that, but I certainly hope it goes away. Any ideas welcomed! Just had a thought: perhaps this could be because in certain situations crying is not an option, like at work, so maybe the excess is coming out in a different way. Any thoughts?

I have observed a few factors which seem to compound the situation when it happens:

• time pressure
• the person reiterating that I need to decide rather than them
• thinking someone will not be happy with me if I don't make the decision (or if I make the wrong choice)
• when I'm hungry
• when I think a particular answer is expected or desired and I don't know what it is

If you think I'm in this situation and want to help, the very best thing you can probably do is to give me a hug (but only if you know me) and ask if I want you to decide. I'll probably nod. It doesn't matter what you choose: the reason I'm like this is because I don't know what I want. If I don't want you to choose, I might just need some time and space. If you can, take me somewhere quiet where we can sit down. I'll probably start to talk to you about it after a while. 

Anyway, until a week or two ago, I thought this was just me being bad at making decisions, but then I watched a documentary that got me thinking. It was the fourth episode on David Eagleman's series 'The Brain' and was titled 'How do I decide.' It looked at how both logic and emotion are needed to work together for decision making and showed a case of a lady with a brain injury where these links had been compromised and how she now finds even the simplest decisions incapacitating and can get emotional over it. I wondered if it could be at all related to AS, thinking about how the brain works differently with emotions and things, so had a look on the internet, and it looks like I'm certainly not the only one.

More to follow on what I found!

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.

Sensory Issues

I have been asked to write about how I deal with sensory issues, and particularly with consideration that I don't disclose to most people.

I will start with a bit of a disclaimer. I consider myself very lucky that I don't have any really severe sensory issues that will send me into immediate meltdown or anything like that. Most of mine are preferences (albeit strong ones!) or things that will cause me distraction but not real distress or if they really are things I find it difficult to deal with they are mostly avoidable if I am aware.

Some examples of my sensory issues:

Textures/touch
I really hate ribbons, buttons and lace. I don't find them physically painful but rather disgusting and revolting. Usually it is possible to avoid touching. Some versions are worse than others: jeans buttons are OK (though not when I was little) but I would never wear a shirt. When they are loose that is the worse. It makes me shudder and flap a bit! The thought of pearly buttons that wobble on old lady cardigans makes me want to run a mile.

Thankfully I can choose my own clothes, being an adult, but looking after children I do occasionally run into button issues. Depending on the buttons sometimes I can grit my teeth and bear it. If not, I will send the child to someone else, explaining that I have a really weird thing about buttons and I just don't like them. People usually think it's a bit odd but accept it. Sometimes I explain it as being like when people hate cotton wool or fingernails on blackboards as a lot of the general population seem to have those particular issues.

Smells
Smells tend to register either very weakly or very strongly with me. I cannot stand the smell of air freshener: it makes me want to vomit. I'd rather smell the poo or whatever bad smell it is than air freshener. I deal with this by trying to explain to people I don't like it, but they usually spray anyway. I try and keep as far away as possible until the smell has dissipated. In fact I'm not too keen on most artificial scents - I have a perfume I can tolerate but I only wear it occasionally and it tends to bother me when I can smell it on my clothes afterwards. I can stand when Mr Peggy wears aftershave but I don't really like it and find it a bit distracting.

I also have an issue with laundry smells, probably because they are an artificial scent. I can tolerate one or two kinds but others distract me a lot: all I can think about when wearing clothes washed with them is that they smell wrong. It's generally fine on other people though and Mr Peggy is very understanding and lets me buy the washing powder I want even though I'm sure he thinks I'm a bit doolally. Occasionally children have really strong-smelling fabric conditioner and that makes me want to be sick too. To deal with this I just try and keep my distance!

Sounds
I don't like really loud noise (you won't catch me at any rock concerts!) and when I'm tired I find focusing in chaotic background noise difficult. To deal with these, most really loud noises are avoidable. If not I might cover my ears for a passing ambulance or similar brief and unexpected sound. People don't seem to find this too weird. In background noise I either tune out or try and watch people's lips to hear what they are saying, or just copy the body language of other people in the conversation.

Other than that I can get distracted by sounds, for example the humming of an item of technology or outside sound. I also find it very frustrating if a sound I know well is wrong: some music players can change the tempo of the music minutely, which also adjusts the pitch minutely. In a dance class this will drive me mad while nobody else has noticed, until I eventually tell the teacher, who says "I don't think we've changed it" then finds out it is wrong!

Sight
I don't really have any visual issues though I don't find it easy to deal with bright light and I have a tendency to get stuck in visual patterns, following them round and round when I notice them. I can also get distracted by anything unexpected or something happening outside the area I am supposed to be focussing on, eg. in training.

Taste
Again, not really a problem for me. There are foods I don't like but nothing that is an ASC-related sensory issue.


Solutions
Avoidance of the unwanted stimulus is my main solution. If this requires compliance from others often a brief "I know this is weird, but..." works.
Otherwise, I tend to get over the issue by indulging in sensory input that relaxes me. This varies according to setting, particular issue I want to get past and other variables but can include:

• rubbing my index finger on my thumbnails or thumbnails on my face around mouth
• letting my eyes lose focus and 'zoning out' for a while
• wearing either loose, comfortable clothes or something that gives even pressure eg. leotard and tights, leggings etc
• listening to music
• walking outside in the breeze/wind/near water
• having a shower or bath
• watching TV

These things are methods I have noticed that help me to descale from impending sensory overload. I probably have more issues with brain overload (emotional/communicative) than physical sensory issues so can do a post on that if required.

Hope that answers some questions. Please ask as always for more details or things I have not covered.

Surprise Square Day - Communicating

I'm having a Square Day today and this is what it can be like.

Today I didn't even realise it was a Square Day. Maybe I'll call it Surprise Square Day. It's been a Square Week or two actually, but I had a quiet day yesterday and knew I had the empty house to myself all afternoon so was feeling quite round this morning.

Dragged myself out of bed (always a struggle. It's just so cosy!), even spoke to Mr Peggy before showering (never usually a good idea to speak to me before I'm properly awake!), got ready for church full of the joys of spring, or something like that.

The walk was lovely with Mr Peggy. The sun was actually shining. We chatted about this and that. Holding hands is always good: I like touch. I felt very slightly wrong inside (this is a feeling I can never explain, but was hardly noticeable this morning) but everything was good, there was nothing to worry about and I was looking forward to the day ahead.

But when we got there people started talking to me. I wanted them to go away. I was rather surprised: today is a good day. Why do I want them to go away?

Now normally all this stays inside and I do my best to pretend like a good person that I am just like everybody else, that I like talking to people and so on. But Mr Peggy is a very wonderful Mr Peggy and quite often says that he would like to understand more about how AS affects me and what it's like. Naturally, having AS, I find this quite difficult to do, though I would love him to know and understand everything, but I made the effort to share.

I said 'I don't like the people today.'
Mr P: What?
Mrs P: I don't like the people today.
Mr P: What do you mean?
Mrs P (thinking 'what is there to explain?!'): I don't like them.
Mr P: Who?
Mrs P: All the people (gesturing)
Mr P (slightly frustrated at his non-communicative wife!): I need a bit more than that...
Mrs P (finally managing to work out a little what she doesn't like about the people today): I don't want them to talk to me. I don't mind them being there but I don't want to talk to them.

It's quite entertaining reading it back, but it's the sort of frustrating scenario that AS throws at me and those close to me quite often. They are frustrated that I am seeming to be awkward by not explaining things or answering properly and I am frustrated because I can't understand what else there is to know. What they also may not realise is that although that still probably wasn't a very satisfactory answer it took a huge amount of effort and self control to be able to give it.

Not sure if it's because

• It takes me a while to figure out what I'm feeling myself.
• Even once I've figured it out I don't necessarily know how to explain it to someone else.
• I don't like explaining things when I'm feeling square. I want people to know but I hate telling them. Why can't they just be in my head?
• I don't know what they want to know - I forget they're not in my head so I don't know where to start.

Why are you asking me questions? Why do you want to know? Why don't you already know? Why do I have to tell you? I don't want to talk. Go away. (But really, I'm glad they don't go away. It's the ones that stick with it and help me make the effort that make things better for all of us. Thank you Mr Peggy :))

Sometimes I think it would help if talking didn't have to happen. When I'm feeling square it's harder to talk. I can't find a way to explain why at the moment but I'll try and think about it.

On a Square Day

I've been having a lot of 'Square Days' recently. I'm rather chuffed with the description actually: the hunt for a word to explain these days is finally over!

The search began when I wanted to express that some days are different from others. We all have good days and bad days and ones where we just shouldn't have got out of bed, but I was struggling with the fact that some times I just seem to feel a lot more 'autistic' than others. But autism is most definitely not a feeling. I'm not sometimes autistic and sometimes not, so it seemed really strange to say I was feeling particularly autistic that day.

I asked a few other people what they thought on the matter. Everyone reported that they too felt more severely affected at times, especially when tired, stressed, ill or anxious. Perhaps I wasn't so far off the mark then! But I still didn't like the phrase (maybe because most people don't know of my diagnosis so it would seem rude and insensitive to people with autism to them if not just plain weird).

I decided to write about it anyway, as I think it's an important thing for people to understand, so I came to my blog to start writing and read my title 'Square Peggy'. It just fit perfectly.

I've just collected a few initial thoughts about what it's like to be me when I'm extra square.

On a Square Day I:

• feel very vulnerable
• may be irritable
• may not like talking, particularly answering questions
• may get overwhelmed by a seemingly tiny task
• am much more likely to shut down
• need more sensory input to make me feel calm and safe, so I tend to stim more and seek comforting touch from someone I trust
• take longer to process language and situations
• tend to avoid risky/unsafe/scary things more, for example eye contact
• may be very emotional
• may seem not to care or be very responsive (usually due to being very emotional)
• find it difficult to join in conversations and may be quieter than normal
• need my own space

I'll probably add to that list as time goes on - those are just thoughts off the top of my head. Please share your own experiences in the comments or send me a message. And please ask if you have any questions or would like more detail on any area. Thanks!

Officially Square

I have been asked to write a post about how I came to be diagnosed with Asperger's Syndrome. This seems like a pretty good idea: it could help many people in the same situation as I was in a few years ago. It could also help to explain to those who don't see my condition a bit about how I came to see it, what effect this had and why it's important to me.

What made you think you might be on the autistic spectrum?

It's hard to remember back to the very first time I thought about it. It was one of those things that pops up every now and then and rings a bell (metaphorically, otherwise that would be really weird) in your mind. I'd heard once or twice about it before but I think probably the first time I seriously considered the possibility was in my final year at University.

I took a module in Music Therapy and one of the key groups therapists work with is people with ASC (autism spectrum conditions). Well, when our tutor gave the basic description the cogs began to whirr. When I heard about Asperger's, things really began to add up.

Over the following months I began to read quite a lot around the area, finding out about how females can present quite differently from males and tend to be under-diagnosed, how things look slightly different in very highly functioning people, and reading a lot of first-hand accounts from people with autism. It was probably these and the new information about females that really started to convince me, as memories from my past 20 years of life came back and began to fall into place.

Because of certain things going on in my life at the time and certain struggles past and present, it became important to me to find out whether this information was applicable to me. I read a couple of books and began to note down the parts that I felt described me. There were a lot. It all finally seemed to add up.


Why did you seek a diagnosis when you've got this far?

Contrary to some appearances I didn't get this far without any issues or struggles. I was never one of the other children. I found many methods to pretend, to mask, to look like everyone else, but I knew I was different. It was hard work to be included by a few. But I never told anyone, I just worked and never really questioned why I was different. I mean, I wondered why other people were so weird, but I never wanted to be like them, just to not be an outcast, and to have one or two people I enjoyed spending time with.

So when I came across all this information that told my life story for me and made sense of everything, it was something of a relief. I could have just self-diagnosed, but a) I'm the kind of person that has to have things set in stone for them to be true and depended on and b) people wouldn't believe a word of it if I had used it to try and explain myself. I had got very good at pretending, and people just don't take self-diagnosis seriously.

The final reason was that I had (foolishly) mentioned it as a possibility to someone to explain things that had been going on in a situation in my life at the time, and they used it strongly against me.

After all those things, I just had to know, really.


What was the process?

I asked a couple of family members what they thought first of all. They dismissed it pretty quickly, explaining that we all have various traits and the whole of humanity is a spectrum, but it doesn't mean you're autistic. Basically, very nice dear, don't be so daft. So that put me off for a while. I put it under my hat.

But my hat is very near my brain, and I didn't forget about it. When I moved out, I collected all the writings I had made from quotes from books and notes about my experiences and took myself in trepidation to the GP without telling a soul. I put a note on the appointment form about what it was for, but she made me tell her anyway. She seemed to think there was something in it and secured the funding to send me to Sheffield Asperger Syndrome Service for Assessment, which happened about 9 months after the initial appointment.

I was sent some questionnaires for family to fill in, so finally braved telling my family what I was doing and got 2 of them to fill one in. Once they realised how important it was to me, I think they were mostly humouring me. My parent's didn't have much on, but my sister, with whom I had most recently been living, had noticed more.

These were sent in prior to the appointment so when I went, the clinical psychologist had read all my own writings, and the two family questionnaires. We talked for about an hour or two I think, and then she told me she had heard enough to be happy that a diagnosis of Asperger's was accurate.

There was some information about services, support, groups etc and a follow up appointment (up to 3 were offered if funding could be secured I think) and a few weeks later I received a full write up of her findings with my official diagnosis.


Was it worth it?

For me, I have to say yes. It has given me peace and understanding about my past and helps me now to understand myself. I can work on discovering how to optimise what I am good at and work on what I struggle with. I can learn to spot warning signs of oncoming shutdowns. I can find methods of coping and helping myself and I can help other people understand how I work, because I am pretty weird in a lot of ways.

Having said all that, I have told very few people of my diagnosis. Because I have developed such effective masking strategies, it's not important for most of them to know, and I like to be treated as me, rather than 'someone with Asperger's'. Also because of my high functioning and masking, it's not worth having to explain and prove myself to those who would disbelieve me, so I just don't tell them. (Of course I do take it as a compliment to my strategies if they don't believe me!)

The main purpose to me of my diagnosis to for my own peace and understanding and that of those close to me, so relationships can be optimised through understanding.


I hope that helps to explain the process to those who are wondering. As always, I don't know what people want to know, so please do ask if you have questions. Maybe there are things you would like more specific detail on as I have been fairly general so as to avoid a mega-essay! Comments always welcome!