None of the Story: Why didn't you tell me?

I've been asked to do a follow-on from my previous post on telling the whole story. As I touched on in that post, I am often prone to the exact opposite and telling nothing at all. Why?

I don't know that (or what) you want to know. Unless I am specifically told otherwise (eg. by being asked specific questions or instructed to inform a if x happens), I assume that what I might say will not be of interest.

It doesn't occur to me that it's something people would want to know. The previous point could be specific to person - I might say things on a certain topic to one person because they have specifically told me they are interested. But I will not extend this to the general population, because I have no information that anybody other than the person who said "please tell me" is interested. If nobody happens to have told me it's a topic I should tell people about, then I may just not tell anybody about it! I don't want to bore people and I don't want to get conversation wrong.

I don't want attention. Attention is a kind of demand to perform, which brings a risk of failure to which I am very sensitive. Speaking in a group of people, no thank you. Unless I am there for the actual purpose of sharing information on something I am well-informed about, but that is different - then I know what people want to know and I'm not relying on my personal performance; rather the factual content of what I am delivering. I have too many experiences of getting conversation wrong to want to invite attention.

I don't want you to know. I'm actually pretty open when people want to understand things, so it's relatively rare that this will be the reason I'm not telling someone something. If it is, it's probably because the thing makes me feel very vulnerable and I'm not ready to share it with them yet. Perhaps I fear I will be judged or misunderstood, or perhaps I am still judging myself about the thing and feeling intense shame. Sometimes I can also feel the need to be in control of information, especially if it is information that is valuable to me and I fear it losing its essence or it being mistreated if I let it get away from me. But more often than either of these, when I think I don't want you to know, it is actually exposure anxiety or demand avoidance being triggered.

Demand Avoidance. I wouldn't say I fit the whole profile of PDA (Pathological Demand Avoidance), but I certainly experience some of its traits at times. An anxiety-driven need for control and drive to avoid everyday demands can strike at varying intervals or in varying contexts, making it difficult to do what is expected of me (by myself or others). For example, for as long as I can remember, way back in childhood, being asked how my day was has made me inexplicably feel angry. This has never changed. Even if I want to, I feel utterly unable to give that information when it is requested of me. I can't express the anger that rises when the question is asked, because it is not reasonable. I feel bad because it seems like I don't want to interact with people and am shut off from them. Basically asking that question is a recipe for disaster! Sometimes I want to tell the person about my day, but if they ask, I can't. Sometimes I want to be able to do it so much that I am rehearsing on the way home what I will tell them, telling myself it will be OK, but I make it into such a demand of myself that I still can't. Or they ask before I have said it that ruins everything. If nobody asks and I don't plan it, sometimes it can slip out sneakily later and fool my brain. Because I didn't have to, I could. 

Exposure Anxiety. Perhaps even more pertinent than demand avoidance for me is exposure anxiety. I wrote a little on this here. It's basically a sensitivity to the awareness of your own existence. When attention is drawn to the fact that I am here, existing, I can find it hard to bear, resorting to avoidance, diversion or eventually retaliation responses. Things that may trigger that sensitivity include making decisions, making changes that might betray a personal choice, realising people are listening to you, your name being used, having a noticeable effect on the world, and many more. So obviously anything that invites attention, such as just talking can sometimes be difficult, never mind talking about something that matters to me and might betray the "me" that wants to stay safe in anonymity.

It doesn't occur to me that other people might not already know whatever it is that's in my head. I can't count the number of times I sat in my psychiatrist's office and had to be reminded that nobody can know what is in my head if I don't tell them... I mean logically I know that, but functionally I forget it quite often. Because things seem so obvious to me, I can't see how someone else could possibly not see them. I mean, I blinked for a split second longer than usual, how can they not know that I'm overwhelmed by emotions or memories and trying not to melt down?! I know that I'm worried about x, y, and z, they know about x, y, and z so they must know how worried I am. I have seen two pieces of information and come to a conclusion, so it would only be natural that everyone else has come to the same one, right?! I'm not quite sure how I manage to maintain this belief that I'm the same as everyone else when I know darned well I definitely am not!! I think I am getting better at this one in recent months though - certainly working hard on saying how I feel and what I need people to know (this is really hard, see exposure anxiety below) and checking whether I'm on the same page as other people rather than assuming.

I've already told somebody. This was a big one in the past and still pops up from time to time. Once I've told one person, I forget that not everybody knows. In my head, I have done "telling," I am past the "nobody knows what's in your head" stage, and so "knowing" is now the status quo. Except that of course "knowing" is only the status quo for the person I've told. If they remember me telling them. You can see the flaws in this brain glitch!

I forget that I could say things just because I want to say them. It's not only worth saying things that are so interesting somebody asked about them. There are many reasons someone might not ask,* but it doesn't necessarily mean they don't want to hear, and in the grand scheme of things, it usually wouldn't actually matter even if I said it and they weren't interested. But sometimes I forget all this!

*They might not know what I could tell them, so they don't ask. They might not want to be nosy. Many reasons, all of which affect me very strongly on the other side - I rarely ask questions because it doesn't occur to me that I can - I don't want to pry and I assume that people would tell me if they wanted me to know. I realise the complete incongruity of my approaches to sharing and receiving information!

I can't think of any things to say. Alternatively, I genuinely have nothing to say. This is my general state of being in everyday conversation. How do people think of stuff to say all the time?! I need a topic, specific pointers, questions, a thing to talk about. Even then I can struggle sometimes. 

I struggle to say things purely because I want somebody to know. This is slightly different from saying things because I want to say them - it goes slightly deeper. It is hard for me to overcome the feeling that if I am saying something purely to help myself, uninvited by somebody else and to benefit myself in some way rather than at random, then I am greedy for taking up time and space and effectively asking something of them (listening). This ties in a bit with exposure anxiety too.

I don't know how to say it. I know there is a thing that I want to say, but I don't know the words to make somebody else understand it. It can seem such a monumental task to work out how to say it that I don't even know where to start. If it's a precious thing, saying it wrong is worse than not saying it at all. Being misunderstood brings us full circle to the previous post and the importance of truth and accuracy. I find wrongness hard to tolerate, and if it is wrongness in someone's perception of my inner life, it is devastating. Sometimes I can't quite even work out what it is that I want to say or put it into words for myself. I may have to do a whole mind map to figure it out, or write for an hour or two. So it's no wonder really that things don't always pop out in conversation!

Gosh, twelve reasons I haven't told you! No wonder I get told off for not being communicative. And then start telling someone else the Whole Story and get told off for that. So start not telling the story again... And to think that I once questioned whether the whole "social communication" aspect of autism really applied to me!

Do tell me if you can think of any more reasons, or if you have great tips for working around them. Hm, maybe I should do another follow-on about methods I use to try and get past these obstacles...

Having just spoken to Mr Peggy I have realised that this post is a perfect illustration of telling the Whole Story and am laughing a lot that I am doing the very thing I just wrote about. And I realised that I could have answered with much more succinctness (definitely a word) his question about how the truth/everything being known being important interplays with telling nothing at other times: it's binary. Like so much in an autism brain. I'm either telling, or not telling. If I'm telling, you'll have to deal with the Whole Story; if I'm not, you'll just be guessing. 

I even worked out the parameters I would ideally work in for what gets told: things that people need to know, things they want to know, and things I want them to know. Trouble is, I still have very few ways of knowing how to allocate Brain Things into those categories! Ideas on a postcard again please!

A sensory processing meditation

Imagine it’s Monday morning.

You are getting ready for work. You’re not a hundred per cent sure whether you can face the thought of another week. You’ve got some tricky meetings coming up and a load of data that needs to be done accurately, but you work with a supportive colleague and you know there’s some fun planned in the afternoon. Anyway, you don’t have a choice, because you have to pay the bills and your partner would hardly be impressed if you refused to go just because you didn’t feel like it. Not to mention your manager.

You get out of bed and prepare for the day. You’ve got an outfit in mind that will help you take on the day. What have you chosen? What is it made of? What colour is it? How does it make you feel? Relaxed? Powerful? Cheerful? 

Go and open the wardrobe and look inside. You see that your clothes have been replaced by a very impressive yet rather cumbersome suit of armour.

It’s the only thing there, and you can’t go to work wearing nothing. Your partner who drives you to work is hurrying you along. It’s time to go. You need to be at work. You have a meeting at 9. You can’t miss it.

It’s difficult to put the armour on. Your partner has to help with the gauntlets. You have no idea how you can even begin to do the day wearing this. You have to wear the sabatons on your feet as well. Your partner fixes them on and practically drags you out of the door. It’s hard to co-ordinate your movements.

You arrive just in time for the meeting, but every movement reminds you of this suit of armour. It gets in the way. It makes some very unwelcome noise in the serious meeting. It’s very uncomfortable. The corners dig into your muscles. You must present the information you have brought to the meeting, but you can’t see out properly. The helmet is too tight, squashing your head. All eyes are on you, wondering why you’re not explaining the data. Your elbows and knees rub on the hard metal every time you bend them.

Perhaps you can take your attention off your predicament for long enough to notice that everyone else is wearing armour too. But they all seem perfectly comfortable and are moving on with the meeting smoothly. 

The meeting ends and you never did manage to make a valuable contribution. How do you feel? Angry that you didn’t perform well and it wasn’t even your fault? Ashamed because the manager you wanted to impress was there? Upset? Exhausted? Not to mention in pain and way too hot by this point. But you can’t take the armour off. Everyone else is wearing theirs without comment, and it’s not even lunch time.

"Don't worry, you're fine really!"

You manage to find a friend on your coffee break and ask what is going on and how on earth they were able to cope in the meeting. You friend reassures you that everything’s fine. Don’t worry; you’re OK. Just keep going and focus on the things you’re doing. You’ll get used to it - see - we’re all OK. 

After lunch you discover that parts of the suit are actually lined with sandpaper, and that is why you feel like the skin is rubbing off your toes every time you take a step, and why you get such pain when you stand up and the suit rests heavy again on your shoulders. But when you try leaving your hands and feet uncovered after lunch, you are told in no uncertain terms that it is unacceptable to present yourself like that. You must look the same as everybody else or you have no right to be one of them. You think perhaps you would rather not be one of them, even though you were so desperate to impress this morning. You remember that there were parts of the day you would have enjoyed if you’d have been in that outfit you had in mind this morning. The one you couldn’t find in the wardrobe. 

But by now it’s an effort just to endure what should have been a fun afternoon, and all you want is to be at home, in your pyjamas, safe. 

The constant pain reminds you every minute that you are wearing this suit in response to a requirement of yourself (you can’t go to work naked and you must go to work), your partner (you must leave the house now, and we need to pay the bills) and your manager (you must look presentable like everybody else). How does that make you feel? Angry? Hostile? Rebellious? Now imagine that you have a condition where you find it difficult to comply with your own and others’ expectations or demands even when you need to do something that you really enjoy. How much more difficult does it make it to keep this suit of armour on?

You reach the end of the day, get the suit off and crawl into bed. How do you feel now? Defeated, that everybody else just functioned as normal but you couldn’t? Worthless, because you couldn’t overcome the challenge? Cheated, that you couldn’t enjoy the fun? Frustrated, because you couldn’t prove in that meeting what you really can do?

~~~~~~~~~~~~~

And how do you feel when you find out that everybody else’s armour was fake? Fleece lined and flexible. They weren’t acting differently because it wasn’t different. They didn’t see the difference in your armour. They didn’t listen when you tried to ask, and they didn’t believe you when you tried to say you couldn’t do it. “You’re OK”, they said. “Just get on with it.”

~~~~~~~~~~~~~

NEVER assume you know something about somebody or their experience unless THEY have told you. You can’t assume that because you, or the majority of people, find something comfortable or acceptable, that the individual in front of you also does.

You can’t assume that because you get a sense of belonging by looking the same as everybody else, that all people do. Some people find their sense of belonging in being understood and accepted. In feeling that their needs are reasonable and that they are supported to contribute to the best of their ability. Without that feeling, they will never have a sense of belonging, no matter how much they look like the others in a group.

If we want to call ourselves an inclusive community, let’s not miss an opportunity to create the feeling of value that is so easily stolen from so many vulnerable people.