Change and the difficulties with acknowledging it

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How to tell the Story

 As I finished writing the previous post and discussed it with others, I started thinking about the techniques I use to try and overcome the various obstacles to communication that I listed. They don't address all of the barriers and they don't always work, but maybe some of my sneaky ways of cheating the system might help someone else with similar difficulties, or might be tweakable for someone else, or helpful to somebody trying to support communication for people with brains like mine.

I don't know that (or what) you want to know/it doesn't occur to me that it's something people would want to know/I've already told somebody/I can't think of any things to say.  These are tricky ones to get around because it's hard to know what you don't know. In some contexts it helps if people ask fairly specific questions (eg. in appointments), although this can lead to me not saying anything that isn't specifically asked so beware! In other contexts questions make it even harder for me to talk (eg. "are you OK?"/"how was your day?" General statements about the sort of things people want to know can be helpful eg. "please tell me if/when you feel bad enough that you use the crisis line" or "I like it when you tell me about specific things that happen in your day". These don't put me on the spot to perform immediately, but I can use them in future when I want/need to communicate but don't know what to say/whether someone will want to hear.

It doesn't occur to me that other people might not already know whatever it is that's in my head/ I forget that I could say things just because I want to say them/I struggle to say things purely because I want somebody to know. Sometimes I can CBT myself a bit in these situations and/or think back to the frequent conversations with my numerous professionals and peers and remind myself that people don't know what's in my head unless I tell them and there is nothing remarkable about saying things, even if people aren't interested or already know them.

I don't want attention. Telling people one to one and by a non-invasive communication message like text or direct message can help with this. Sometimes dropping things unexpectedly into unrelated conversation works for me though it probably isn't great for the other person! I may also try and change the subject again very quickly afterwards to deflect attention away.

I don't know how to say it. I find processing by writing particularly useful: brain dumps, blogging or just scribbling down whatever I am thinking or is bothering me. Other people use drawing and various different tools to help them figure out what's in their head and how to translate it into something other people might understand. If I don't have the time to do this on the spot I might be able to use a flashcard - I have a cunning one that reads "there's something I need you to know" - to get the ball rolling and help me avoid the distress of feeling trapped and despairing. We might then agree that once I've figured it out a bit if I can't at the time, I will email an explanation or a copy of my brain dump to discuss when we next speak.

Demand Avoidance/Exposure Anxiety/I don't want you to know.

• Writing a text message about my day or my emotional state and sending it before I get home so I don't have to say it. This is less "directly-confrontational" and sometimes manageable. A bit like writing this blog, I can pretend it's just writing and that I'm not actually telling anything to any people. Pressing send can be difficult so it's best if I do it really quickly without thinking about it and then move quickly on to something else.
• Getting in there first before anyone can ask me a question. Sometimes I can't do this though, and other times when I do it tips me over into some weird manic over-talky state which is like an elaborate mask (I can't communicate as myself so I'm almost acting a part and distancing myself inwardly from the vulnerability/anxiety that communicating brings. This is very Exposure Anxiety, if you are at all familiar with Donna Williams/Polly Samuel). So I'm still not sure if it's a good cheat or a bad one, because it does the job of communicating what I need/want to communicate, but leaves me exhausted when I come down from it.
• Saying the thing in some entirely unrelated context where I wasn't planning to say it. This takes my brain by surprise so it doesn't have a chance to say "no" and stop me from communicating. It also gives me a feeling of safety because I have taken the other person off guard with it so I feel in control, which protects me slightly from the vulnerability of exposing the insides. Again both routes around Exposure Anxiety. I hate unpredictability in others but I like to maintain a sense of my own unpredictability... Perhaps because it keeps me freer from expectations that I am afraid I won't meet (ie demands, think PDA traits).

What do you do to help you tell the story? What do you find helpful or unhelpful as someone wanting to hear the story? Please let me know - this is very much an ongoing work for me so any ideas are helpful!

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!

Doesn't play well with others

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Having a "me"

I've been wanting to write this post for a while, but I'm not entirely certain of what I want to say, so please bear with me!

It's a post about being a "me": existing as a person or specific entity present in the world of other specific entities. This is something that most people probably take for granted most of the time, but a truth that I have often struggled to accept, or done my best to ignore, consciously or otherwise.

Even as a child I could not bear being conspicuous. Reading aloud at school was terrifying even though I was an advanced reader, being picked on to answer a question (because I NEVER volunteered) was my worst nightmare, having my music practice observed (just the presence of another person in the room, or even the house) made me angry and fearful and even the acknowledgment of my having completed some action or made some choice made me at the least uncomfortable. I sometimes find it intrusive when people use my name. When I'm really stressed out and can't have the control or invisibility I need, I have recently realised I just disappear. My body is there, doing what has to be done, but I'm not really in it - I have relinquished all choice, feeling, control, and thereby, "me", because to try and maintain a part of it or be present while lacking those things is too painful.

I always knew I was different from other people and that other people often knew this too, and being different is generally experienced as being wrong. I learnt to fit in well enough to avoid being a complete social outcast, but for many years I was very much clinging on to the perimeter of inclusion with people who were hardly the embodiment of "accepted" themselves. My goal in life was to go unnoticed.

All this is hardly news to me, and I am fairly sure that it has been a conscious goal through childhood and adulthood. When I received my diagnosis of autism I finally had a "reason" for why I was different and as I had grown older I had found a small number of friends who I truly fit in with. I had the longed-for acceptance and belonging and an explanation of why it had always been so difficult.

How wonderful to go unseen

Yet I retained this need to be invisible. As I worked through therapy recently I was aware that this was one of the functions of my mental health disorder. It was driven by a desire to be entirely insignificant, unnoticeable and to the outside world non-existent. That way you can't cause any problems, you can't be at fault or fail, and you don't hurt. Of course this is nonsense, and I did all of those things a thousand times more because of my condition, but those were the beguiling promises it made me.

Through therapy I have been trying to entertain the idea of a "me" being allowed to exist. Complete with potential for pain for others and myself and inevitable imperfection. I often find it difficult even to write or speak in the first person (even as this is written!), but I am gradually beginning to tolerate the existence of my emotions and to accept what I do or don't do, whether it is what I was aiming for or not. And then to show compassion to that "me" that has been allowed to exist. (It turns out my psychologist wasn't lying when she suggested that accepting things I don't like about myself might help them to gradually be needed less. Counterintuitive propaganda I thought, but there is definitely something in the whole acceptance, compassion, nurturing thing. I hate it!)

My battle with this idea really struck me after I read a post on social media over the New Year period. It stated that "Your wellbeing should be your number one priority. Nothing else is more important." I turned this thought around and around in my head and couldn't make sense of it. Something was wrong with it: it didn't seem to add up. I couldn't work out if it was supposed to be true or not, so I consulted Mr Peggy. He seemed to think that ultimately it probably is true. I'm still not sure (discussion welcome!), but it really made me aware that I still have a strong resistance to considering such a high value on my wellbeing even though I have changed a lot.

Then I began reading a book on "Exposure Anxiety" and my goodness, it resonates in places (I've only got to about page 30 of 300-and-something!). It was mentioned in the afterword of Donna Williams' Somebody Somewhere (second of two autobiographical accounts of Williams' life with autism and her journey from "her world" into "the world") and sounded interesting, so I popped it on my Christmas list and have begun to read avidly.

We disappear at any hint of discovery

Williams defines Exposure Anxiety as "an involuntary social-emotional self-protection response that is increasingly understood as a crippling condition affecting a high proportion of people on the autism spectrum." "Exposure anxiety makes it difficult to dare 'expressive volume' in a directly-confrontational (self-in-relation-to-other) world." "Exposure anxiety is about feeling your own existence too close up, too in your own face." (Williams, D. Exposure Anxiety, The Invisible Cage 2003, 10-11.) It produces aversion, diversion and retaliation responses and can present in many ways, just as each individual with autism is different, but can include difficulties in making decisions, fulfilling needs, being unable to perform under observation tasks which are well within an individual's skill set, speaking through other people's words (echolalia), being very controlled or controlling, and a myriad of other issues.

It has nothing to do with Exposure Therapy used to treat various mental illnesses, and I'm not sure that it is a widely-acknowledged "thing", but I think it can be a useful way of understanding aspects of behaviour in some autistic people, and the suggestions given for supporting such people certainly have merit. I see a large overlap with Pathological Demand Avoidance (PDA): though perhaps a difference in motivation, the mechanisms and presentation can be similar and helpful responses may look alike.

Perhaps I will write a separate post once I have finished the book, but I found it an interesting concept given my musings on why I find it so difficult to have a "me." (Which I still want to call a "you" because that is much less uncomfortable!)

So here's to "me." Me is a bit intermittent and only appears when she can face it, but we're seeing more of her as time goes on. Just don't tell her if you see her - she'll probably evaporate into thin air!

PS. You can probably tell her afterwards, when it's over because then it's less intense