One Month On

I have how had my official autism diagnosis for a month. In that month, life has continued to change almost as rapidly as it did before I was diagnosed. My father’s cancer diagnosis has obviously changed my priorities with regard to how I spend my limited energy over the coming months. My financial situation has once more become difficult and precarious and is causing me considerable amounts of anxiety. And I have, with huge regret, realised that I cannot, at this time, continue with the maths degree that I so badly wanted to finish, so it is time to let go, to stop pushing, and to admit that I have simply run out of time and energy.

Obviously, life is still a long way from where I’d like it to be. My sleep patterns are still poor, which is not great, but they’re better than they were a few months ago. I’m now managing to leave the flat around twice a week, which is a slight improvement. When I do go out I am slightly better able to cope because I am more aware of which strategies work for me and I’m learning to give myself more recovery time afterwards.

I have now started, very slowly, to eat just a little better than I have been doing, which is no bad thing, since I saw a full-length photo of myself recently and was slightly shocked at how thin I looked. I finally weighed myself a couple of days ago and discovered that I’ve lost a stone since last summer, simply because I have felt too sick and anxious to cope with food. This is not good – I was not trying to lose weight, particularly not in that way, and I am just lucky that I was in good enough physical condition to start with that my body could cope. I am also still drinking too much alcohol in order to cope, but am starting to try to cut down just a bit in order not to do too much more damage to my physical health.

However, despite all the difficulties mentioned above, the persistent insomnia, the struggles to go out, and the continuing dysfunctional relationship with both food and alcohol, there are signs that things are improving. My husband and several friends have remarked that they perceive my underlying mental state to be improved and, even though I’m still getting some extremely sad, angry, and regretful moments, I’m starting to accept things as they are in a way that I didn’t before my formal diagnosis.

There were several people who said, before my diagnosis, that since I knew I was autistic, they knew I was autistic, and my friends and family accepted that I was autistic, there really wasn’t any necessity for me to pursue a formal diagnosis in order to understand myself. What none of these people understood, however, was my need for validation, reassurance that I hadn’t simply imagined the whole thing, and the huge huge confidence that the formal diagnosis has given me. This might not be necessary for everyone, but for me it was essential. And it really has made a massive difference to my life.

The formal diagnosis also, for me, marked the end of the old life, and the beginning of the new one. The process of discovery in the preceding months was like a sort of introduction, perhaps an overture before the curtain was raised at the beginning of the first act, or maybe the preface before the start of chapter one. My old life has been demolished, and now the process of rebuilding can begin.

There is obviously a lot of relief that the process of seeking a diagnosis is now over, and I feel, even more than previously, that my life now makes sense in a way that it never previously did. As I predicted in the last few paragraphs of Why Bother, the diagnosis has finally given me full permission to stop regarding myself as a naughty, lazy, failure of a human being. I also feel liberated from the pressure to “succeed” that has pervaded my whole life so far. There is still a long way to go and I still, frequently, feel that I am not entitled to breathe the air and that the world would be a better place without me, but I am still only a month into the new life, and there’s nearly half a century of the old one to analyse, reevaluate, and reframe.

Furthermore, I have to go through the process of mourning the life I might have had if only it had been recognised that I was autistic before I got to my mid 40s. There are still difficult topics to tackle – the mental health professionals who failed for two decades to recognise it, my childhood, the incessant, triggering, references to small children when I try to research autistic traits, and where I fit, if at all, into the autistic community (I am used to being alone and to shying away from being part of any sort of group, and discovering that there are others who experience so many of the same things as I do is, for me, somewhat disconcerting).

But one month after diagnosis there is a calm, even more so than that I felt after discovery. I strongly believe that there is a very good chance that my mental health will, eventually, be better than it has been for decades, possibly even than ever before. I am already, after just four weeks, much more confident about describing myself as autistic, and feeling that I have a right to do so. I’m also treating myself much more gently than I did previously – because now I have official permission!

I’m certain there will be yet more phases to go through, and not all will be easy, but maybe, just maybe, I will eventually rebuild a life that works. And it will be a better life than the one that officially ended four weeks ago.

Misunderstandings

61-2017-01-14-16-41-18“Big or small?” the barman asked.

I couldn’t believe my ears. Had he really just asked me that? This was just an ordinary pub, nothing particularly sophisticated, the sort of place where you order a pint and a steak and chips at the bar and eventually someone brings it over to a table with a gold number screwed into the corner.

We’d ordered our drinks, which were now sitting on the bar, and were just completing our food order. Steak and chips or something like that. Then the barman asked if we wanted any side orders. I thought that onion rings would be nice, so I said “Onion rings please” and received the answer “Big or small?”

I stood there at the bar, absolutely amazed that the pub sorted their onion rings by size. Utterly unable to comprehend this level of onion ring detail. I guessed that the big ones came from the outside of the onion and the small ones would maybe come from the middle. I thought the small ones would probably be quite cute.

I turned to my husband and asked him what he thought. He suggested big, and said that he might steal a few. I told him that he could steal a few if I had small ones…

And, of course, he laughed, because, on this occasion he’d understood correctly and I’d understood wrongly. This wasn’t anything to do with the size of the onion rings, but the size of the PORTION of onion rings. I’d completely misunderstood the barman’s question and gone off into a reverie of onion ring categorization that would probably only ever occur in some sort of gastronomic competition – certainly not in a very ordinary pub.

This is the sort of ambiguity that most people’s conversation seems to be full of, the sort of thing that people are supposed to understand as if by some sort of magic. The sort of thing that I’ve been trying to learn all my life, and have never quite got right. Close enough for survival most of the time, and because I’m generally quite affable and quite content to laugh at my own mistakes, it’s all just been put down to being a bit eccentric. Furthermore, there have been occasions where people have laughed at me and I’ve wondered what the joke was, until I realised I’d misunderstood and they’d actually assumed that my suddenly talking about, for example, miniature onion rings, was in fact my quirky sense of humour!

My husband is not immune to the “literal effect” either. He once volunteered to help at a party (partly because he had to be at the party and helping is one of his ways of avoiding having to make small talk – in general he’d much rather work than chat), so the hostess of the party said it would be really helpful if he could gather up empty glasses from around the house and take them to the kitchen.

A simple and understandable instruction – empty glasses to kitchen. Easy.

So, every time he saw an empty glass he took it to the kitchen. Each time someone took their last mouthful of wine or beer or whatever and put their glass down, he swooped in and took it to the kitchen, before there was even a microchance that it might be refilled.

The consequence was that people kept having to get new glasses and the supply of glasses ran out about half way through the party and the glasses had to be washed up so that people could carry on drinking.

But the instructions were clear – empty glasses to the kitchen, so that’s what he did!

I’ve apparently been making similar kitchen-related mistakes for many years. I go to have lunch fairly regularly with my best friend and his wife. I sort of know that I should help somehow, because my husband has told me that people are meant to offer to help in the kitchen, but to be honest it always seems so terribly complicated that I just sit there and hope that if I’m really needed to do something then someone will ask me – communal working is something I find really challenging.

Occasionally my friend’s wife has handed me 3 plates and asked me to put them onto the table. I have done this, reliably, exactly as instructed, for around 20 years. I take the stack of 3 plates from her and place them on the table.

About a week after it became obvious that the autism hypothesis was true and I told my friend and his wife that I was autistic, she suddenly said how much sense it made, and immediately mentioned the plates. Apparently for around the last 20 years, when handing me plates to put on the table, what she’s actually meant is that I should LAY the table, putting plates in situ in front of the places where people sit. And similarly with knives and forks.

I have been completely clueless about this hidden meaning. She’s always thought I was being slightly obstinate and unwilling to lay the table. I’ve believed I was doing exactly as I was told!!!

It seems that there are hidden messages all over the place in human communication that I often miss, even when they are apparently clear and written down.

Around 20 years ago I had a boyfriend for a year or so, and, as it became obvious that the relationship wasn’t going to be a permanent one and we started to drift apart, we both started to go our separate ways and move on. It wasn’t an acrimonious parting, just a recognition that things were now over.

I then got a new boyfriend, and started to move on with my life, and shortly afterwards received a letter from the old boyfriend. In this letter the old boyfriend wished me well, and told me that he had a new beautiful girlfriend and was very happy spending time with her now (or words to that effect). I read the letter and thought “That’s nice, he has a new girlfriend, I hope she treats him well and they’re happy together.”

The next time I saw my new boyfriend I reported that the old one had now moved on and showed him the letter. He took one look at it and said “There is no new girlfriend, he’s trying to get you back.” I was completely gobsmacked and couldn’t believe it for one minute. If he wanted to get me back then why on Earth would he invent a fictitious girlfriend? Why not say “I miss you, is there any chance we can see each other again?”

But my new boyfriend was right. Not very much investigating showed that at that time the old one didn’t have a new girlfriend. And the letter was just some sort of ploy – apparently I was supposed to feel jealous or something. One which, of course, completely backfired because I had no way of understanding this sort of game, no way of comprehending that there was some sort of hidden message in the letter – like almost everything in life, I simply took what it said at face value.

There have been many of these sorts of incidents over the years – too many for me simply to have been “a bit slow on the uptake” or to have just ordinarily misunderstood quite so often. I’m certain that everyone misunderstands communication from time to time, but I seem to do it rather more often than most people do, and I know I spend a lot of time deconstructing sentences in my head, trying to work out exactly what they mean and attempting to understand what the other person is really saying, and I often get it wrong. I’ve learnt and learnt and learnt to try to read what people mean when they communicate, but there have always been holes in the learning, and I’ve always been thinking very very hard and very very consciously about what things can mean. I learn from each mistake – I now know that onion rings come in portion sizes, not actual sizes, I now know that putting things onto a table sometimes means laying a table, and I now know that boyfriends pretend to have new girlfriends as a way of trying to persuade old ones to return to them. But all of this is learnt, consciously learnt, one mistake at a time, and I still don’t really understand why people don’t just give more accurate instructions.

I’m still learning, still working it out, but at least I now know that the reason I get things wrong is because imprecise instructions that assume I have a level of social knowledge that I don’t have are really confusing to me. As I start to remember these seemingly innocuous and isolated incidents they’re linking up to form a consistent pattern of things that I misunderstood, or didn’t pick up on. I’m a fast learner, so I keep learning, and I copy copy copy other people who seem to know what to do, but I don’t have the inbuilt social knowledge that other people have.

The social games that so many people seem so fond of are totally lost on me. However hard I try to learn how they work, I always seem to be running along behind all the social people, trying to catch up, trying to figure it out!

But the whole thing is a massive effort, and a whole load of trying to guess what exactly I’m supposed to be doing!

Out to Dinner

53-2017-01-28-14-04-07A few weeks ago I got a message from a good friend of mine. He and another couple of friends were planning on dining in College, as they do from time to time, and he wondered whether my best friend and I would like to join them, as we do from time to time. It’s usually a very pleasant evening, and a chance to catch up with people we don’t see that often, especially as the friend who sent the message lives abroad and travels a lot.

Usually I’d message back by return and get signed in to dinner straight away, no question, the only limitation being whether I was already booked to do something else that evening. However, even though my diary is looking really really empty at the moment, I hesitated. An evening in College can be very tiring, as I described in Sudden Illness, and in my current state of burnout I really didn’t know whether I could cope with it at all.

I sought advice from my husband, who is often wise in these situations. He suggested I sign in anyway and then cancel if I really wasn’t well enough. It seemed like a good plan, so that’s what I did. I rather hopelessly didn’t manage to message my friend back, but I did at least sign in, and started to prepare for the biggest social thing I’ve done for many months. At the time I signed in I didn’t know whether such an evening would be totally beyond my capabilities, but I thought I’d give it a try.

And so the strategies went in to action, and a rather embarrassingly large amount of preparation and thought went into a simple evening out to dinner.

First, the diary. I made sure that I didn’t push myself or attempt to leave the flat for two full days before the day of the dinner. Enforced rest. Enforced quiet. Save energy. Save save save. On the day itself, I made myself rest in bed all morning. By the time the anxiety kicked in mid-afternoon I was up, but under my weighted blanket in the dimly lit sitting room, exposing myself to as little input as possible to keep my energy as high as it could be.

I also decided to wear as comfortable clothes as I possibly could within the constraints of looking “reasonably tidy”. A pair of elasticated trousers I usually wear for concerts, a soft t-shirt, a fleece jacket, and a soft scarf. Fiddle toys in the jacket pocket, chew toy round my neck under the scarf. Absolutely everything as easy as it could be and as comforting as it could be. And, of course, the tinted glasses that have now become my usual eyewear.

I expect I’ll do quite a lot more of this sort of thing in future and much of it will become automatic for me, but for the moment a lot of it is new, and a lot of these things are things I’m trying to see if they work and see if they help me conserve energy to do the things I want to do without getting as exhausted and stressed as I have done in the past. I’m experimenting to see how much rest I need beforehand, how much recovery time, what sort of balance I need to achieve between behaving as a reasonably responsible adult in public and being as comfortable as I can in different situations, and what strategies I can employ to help.

I also made the decision not to drink more than a taste of each wine with dinner and to drive home afterwards, partly because introducing a lot of alcohol into the mix might alter my sensory or social responses in either direction, and partly because I could go home to a place where I had the comfort and safety of my own rules, my own familiar arrangements, my sofa and telly and weighted blanket and so on, with no need to pack any bags or do anything beyond getting through the evening and then driving a familiar route home. I’ve mentioned before that driving is one of the things that comes naturally to me and I can do quite comfortably even when very stressed about other things.

Going home had the added advantage on this occasion of complete solitude because my husband was out speaking about mental health issues and was then planning on a working night, and was also going to be out for most of the next day, so not only would I wake up in my own bed, I wouldn’t have to engage in any conversation at all. If I felt absolutely terrible the next morning then I could just stay in bed for as long as I wanted.

It actually turned out to be a very good evening to have had as my first real social event in many months. There weren’t too many people signed in to dinner, so it didn’t feel crowded or overly pressured. My best friend organized the seating such that I was at the end of the table and he was next to me, so I wasn’t sitting next to a stranger. My other good friend sat opposite, and another of our group next to him, so I was surrounded by allies and friendly sympathetic people, two of whom already knew what had been going on in my life.

Nobody seemed unduly fazed by the fact that I was gently rocking back and forth, and I managed to eat most of all the courses of my dinner (though didn’t push it – tasted everything, but stopped eating long before I usually would). The familiarity of the setting (I’ve been eating in that hall since I was 18) helped a lot, and the dangly bits on the sleeves of my academic gown actually turned out to be an excellent stim toy!!!

Afterwards, something that would usually be a slight disappointment was something that actually did me a favour. The small number of people eating in meant that there was no formal dessert (formal dessert involves sitting at another table, generally more obligation to converse, and following customs regarding port, eating of fruit, and so on). Instead, the fruit was on plates in the Common Room sitting room, so I was able to take my boots off, sit cross-legged and comfortable on a sofa, and be much more relaxed.

And I sat and sipped a cup of coffee, and then some mint tea, and had a chocolate and a raspberry. And played with my fiddle toys a bit, and even chewed my chew toy a bit, and people looked at old photographs, and chatted, and I didn’t make myself chat except when I felt like it, and the evening actually turned out to be quite a relaxed one, surrounded by understanding friends in a non-threatening environment. If I appeared odd to anyone, then they didn’t comment or weren’t worried or both.

I was reminded of the line from Dirk Gently’s Holistic Detective Agency where Reg remarks (on revealing that he’s been living in the same set of College rooms for 200 years) that “one of the delights of the older Cambridge colleges” was that “everyone is so discreet. If we all went around mentioning what was odd about each other we’d be here till Christmas.” There are some aspects of my dark blue home that are very similar to the characteristics of his light blue alma mater that Douglas Adams incorporated into his brilliant stories (side note: count how many “previous blog posts” are shown in the list on each page of this blog – though you probably won’t need to now you’ve seen this remark in the context of this paragraph)!

And so the evening was a success. I drove my good friend and best friend back to their guest house and home respectively, then drove back home myself. When I got back I definitely felt that I’d been through some sort of “assault on the senses”. My ears were ringing as though I’d been at a loud rock gig, and I was slightly dizzy and nauseous and certainly not capable of doing anything more than collapsing onto the sofa underneath my weighted blanket. I stayed like that for about an hour, just curled up with my iPad, waiting until I felt a bit better. After about an hour I had enough energy to rock and bash myself against the back of the sofa, then after another half hour I started to feel distinctly better. I put the telly on, muted, and one small lamp. After a second hour I was well enough to get up and get a glass of wine and put some music on very very softly. Three hours after getting home, I finally had enough energy to have a short bath and get into bed.

I slept on and off for about 4 hours in total, and now, at half past one in the afternoon of the next day, I’m finally out of bed, dressed, and have managed to make myself a cup of tea and write up the evening while it’s still fresh in my mind. I actually feel much much better than I thought I would today – maybe that’s the result of the planning, and the care, and allowing myself the 3 hours to calm down properly before going to bed. I think it’s also a question of managing expectations – I KNEW when I decided to go last night that it was going to be a big deal in the state that I’m currently in (a month earlier and I would have been too unwell even to consider it). So none of it is a surprise. I know why I feel like I do during and after social occasions now, and just knowing means that there is a whole level of worry that there is something ELSE wrong with me that is now gone.

I’m also aware that things will continue to improve for a while yet as I recover from the burnout and as I adapt and get used to how things now are. Exactly how much functionality I’ll regain is still unknown, but early signs are that I won’t actually spend the whole of the rest of my life as disabled and impaired as I was a couple of months ago. Once I’ve stabilized I will be able to do a bit more, especially if I manage my life a bit more appropriately now that I know what needs managing.

This sounds completely mad, writing it up. So much planning for one evening out. Three hours to recover sufficiently to put myself to bed when I got home. Most of the rest of the next day spent in bed. It seems insane from any normal perspective. It must seem mad when viewed through the eyes of the well.

And I ask myself whether one night out to dinner is worth all that effort, and the answer is a resounding YES. Partly because it was simply a lovely evening with nice people and I felt cared for and loved and lucky to be where I was enjoying the food and the company and the surroundings. But also, crucially, because it gave another glimpse back into the “normal” world, a world not dominated by assessments and psychologists and psychiatrists and mental illness and difficulty, and a world worth fighting to get back to.

In many ways it was just a simple evening out, but it was also another of those glimmers of hope that I will eventually be able to function reasonably well in the world again and enjoy some of the things that make life rather better than just “struggling to get through each day”. I used a lot of energy last night, but early indicators are that I actually got some energy back too, which is better than I could possibly have hoped for.

Be Prepared!

45-2017-01-04-16-45-19Baden-Powell had it right. The motto that I learnt as a Girl Guide in my youth, and which the Boy Scouts also used, was spot on as far as surviving life as an autistic person is concerned. Preparation is key. Planning is key. Unexpectedness causes panic, anxiety, and, as it did for me yesterday, meltdown.

I thought I’d done something fun and nice and innocent. I shared a short video on my Facebook timeline, showing a recipe for a pudding made from biscuits, chocolate, and marshmallows. I thought it was a bit of fun, I liked the way the marshmallows melted in the oven, and that people might enjoy watching it. I didn’t expect any negative comments beyond “So sad I’m on a diet at the moment” or “Don’t let my kids see that – they’ll want one”.

Then I got up (I’d posted the video from my phone in bed), went to the immense effort of putting clothes on, thought, since it was already around midday, that I should at least try to get some nutrition into me (I’m having quite a lot of issues with food and often can’t eat at all until the evening when anxiety levels have reached manageable proportions). I went to the fridge and knew that the one thing I might be able to face was some milkshake, and that that would be good because it would provide both hydration and nutrition, and I could take my medication with it. Sorted.

But there was no milkshake. We’d run out. I resisted the temptation to message my husband to tell him because he’s on the very edge of coping – working all hours, fixing the washing machine, providing massive amounts of care. When he fails (to get enough milkshake) it’s not because he isn’t trying his best but because he has simply run out of energy.

So, by now it was early afternoon. I still couldn’t eat. I looked at the mug on the kitchen side and tried to work out how I might get tea to be in it, and couldn’t, because my brain couldn’t work out the many complex steps involved. I used the only energy I had to get a glass and fill it with water, because my brain told me that if I couldn’t get nourishment I should at least try not to dehydrate. In the absence of milkshake, water was the best I could do.

Then I went back to the sofa and opened up Facebook. There were comments on the video. Not good ones. Along the lines of “It’ll give you a heart attack”, “It’ll give you diabetes”, and, simply, “Yuk”.

When I saw the word “yuk” I burst into tears. How could I have got it so wrong? I shared something that I thought was so innocent, and all I get is stuff about horrible illnesses and yuk. I obviously fucked up big time. This is what I made people think of. Great. Nice one me.

I tried to reply about what a screw up I’d made, but could hardly type because I was shaking so badly and could hardly see through the tears. I really was wrong. A socially inept pariah. I would have to give up social media too. Evidently now the mask had disintegrated and I was starting to be my full autistic self I was losing any rational ability to see what was good. My judgement was screwed.

Socialising outside the flat is already limited because of the sensory overload. It was evident in that moment that socialising online was also falling to pieces. My life was heading for a simple “get up, stare at telly and play solitaire, try not to kill self, go back to bed”. Forget people. I clearly didn’t understand them. They clearly don’t understand me.

I already strictly limit what I post on Facebook. I have extremely strong political views, which anyone who knows me will know. I very rarely post about them – not because they aren’t passionate and strong, but because I know my mental health is too fragile to cope with the inevitable debate it would create. I have to limit the amount of news I currently take in for similar reasons. It’s not that I don’t care, but that I can’t cope. And by “can’t cope” I don’t mean “makes me cry and feel uncomfortable” I mean “would tip the balance between thinking that I want to be dead and taking active steps to be so”. So I avoid the triggers, because it is the only way I will get well enough to lead any life beyond staring at the telly.

I also avoid a lot of animal cruelty stuff, for similar reasons and because I know it upsets people. I go out of my way to be uncontroversial. When I see posts that upset me or of things I don’t like or can’t cope with, 99% of the time I simply hide them from my feed. Even if someone posts a picture of their dinner and it looks perfectly vile, I just hide it, as I do with other things that I know most people find harmless, but trigger a deep and upsetting emotional reaction in me. If I compiled a set of specific “trigger warnings” for me, it would probably surprise the hell out of people – some things that trigger bad feelings in me are, in most people’s eyes, absolutely normal, yet other things that many people consider triggering don’t bother me in the slightest. I know that my brain doesn’t work the same as other people’s do. I got that years ago. I didn’t need to know about autism to get that – it was obvious as soon as I knew I was a person at all.

So I’d posted a video of a pudding, and got this massive negative reaction. My brain immediately challenged the assertion that eating such a thing would “give a heart attack” because all available evidence suggests that people eat puddings every day without suffering myocardial infarctions and I don’t go into restaurants and see defibrillator machines being wheeled out with the dessert trolley. This was clearly some sort of “small talk banter” that is factually inaccurate but that I know people engage in. Ditto the diabetes claim, which irritates me every time I see it on a post of sweet food but the same people don’t post similar comments on other carbohydrates. Nobody ever comments on how much the slice of toast is raising my blood glucose, on how much the obesity you get from eating too much of anything and doing too little activity to burn it off is the contributing factor that can lead to diabetes in some people. Both the heart attack and the diabetes comments come from a general healthy eating thing and not too much sugar (or whatever is the health fashion at the time) but this ignoring the real facts to make some kind of “soundbite” is part of the world of small talk that drives me crazy.

I’m simplifying massively here. I’m not a medic and I know there are papers galore on this stuff written by people who’ve done the studies. But these glib assertions I see irritate the hell out of me every time. I’ve learnt, over the course of many years that this is what people do. I don’t understand why they do it. But they do. Usually I have enough energy just to like the comment and move on. But yesterday I didn’t. Every scrap of knowledge about heart disease and diabetes from the appropriate branches of my brain flooded my head and overwhelmed me (this is quite normal – one comment like this frequently triggers a huge wave of information release, and information that is not in word form, so I can’t even produce it to debate in real time).

And then I read the one comment that wasn’t about disease. And it simply said “yuk”. And everything along the lines of “if you can’t think of anything nice to say then don’t say anything at all” came flying at me. Why did this person have to be so horrible? Maybe they don’t like chocolate? Or marshmallows? OK. So just move on. Surely? But no, they have to tell me that I’ve shared something horrible, that repulsed them. To make me question my sanity.

At that point I feared a whole slew of comments about this awful awful disease-ridden vile thing I’d shared. I’d clearly got it so so wrong. So I deleted the post. The most I could then manage was a tearful emoji on my wall, and one further comment before my words disappeared. I couldn’t speak. I couldn’t even make enough words to type a coherent sentence. I closed Facebook and sat there wishing I had the means and the energy to end my life.

Then, once the meltdown subsided, I thought “Oh shit, husband might be worried”. So I opened Facebook again and found a message from him – just a question mark. He knows when not to involve unnecessary words. I did the best I could to explain, and to say that there was a whole load of shit broken out on my wall but that I was still almost nonverbal so couldn’t even do anything to explain what had happened. Neither could I even thank those who were being nice, nor enter into the discussion that had started involving cake, and eating issues in general. Fortunately we can communicate without sentences. He knows what I mean, even when the language is only partially formed.

So he did his best to explain, and I’m now doing the full job, via a blog post, because what happened raises one of the things I’ve known all my life. I need to be prepared.

Almost everything I do is planned. If I am going out somewhere then I look it up beforehand. If I need to leave the flat to buy a pint of milk then I prepare for several hours. I have it in my head. When I go and visit my friend I know what will happen. His wife will open the door. We will say hello, I will go upstairs to my friend’s office, sit in the usual chair, and he will just finish the e-mail he’s writing then we will chat. All these normal things are routine. Done before. I prepare for them in my head, but I am fairly certain of the outcome of my actions.

If I am doing something risky or unfamiliar I prepare myself. I know it will be hard. I know there will be unknowns. I know these unknowns are stressful. Therefore I prepare. I put a mental guard up. This is exhausting and takes a lot of energy to do, so I only do it when I have the available energy or when I absolutely need to. So, if someone invites me to, say, play in a new orchestra, I have to factor in the energy of the guard, because I’m going somewhere unfamiliar, meeting new people, and so on. I also have to make new scripts for these occasions, and know that I might even have to improvise conversations and people might ask me questions I haven’t thought of or discuss things unfamiliar to me. So I have the guard. It uses energy. But it protects me.

If I did decide to post something controversial on my Facebook wall I would only do it when I had a lot of energy. I would put my guard up. I would expect negative comments. I would be prepared for debate, and for it to feel rough, and to trigger emotions, and to feel dangerous and scary. I would have already scripted answers to many of the questions I anticipated. I know there are certain people’s timelines that are full of triggers and scary things. Certain groups that I can only cope with sometimes. I only look at them when I have my guard up (sometimes only when my husband is at home with me so we can discuss whether my reaction is correct or not).

I prepare myself. I know that the new thing or the controversial post or the triggering group needs to be approached only when I’m feeling up to dealing with them.

But, when I posted a video of someone making a pudding, I was not prepared. The wholly negative reaction that video produced sliced through my system like an electric shock. I allowed myself to look at the Internet without my guard. As myself. Soft vulnerable bit exposed. Being myself (as people are so fond of telling me to do) means being exposed to hurt and difficulty. Because what is banter to many people is not to me.

This is why being oneself is so hard. Why so many autistics (and also, I suspect, people with anxiety disorders, PTSD and so on) withdraw from social life even, sometimes, when they are lonely. It is a form of self-protection. Because the way our brains are wired means that if we are totally “ourselves” then we expose ourselves to situations that cause distress because many people don’t understand how seriously we can take things that are understood as “social banter” by most people. If we go the alternative route and mask our feelings, saying the “right thing”, and putting our guards up, then we might well appear successful and have “normal” reactions to posts on Facebook and so on, but the cost in energy is huge. And that is why we become so utterly exhausted.

Yesterday, needless to say, was lost. I achieved none of the things I’d hoped to. I managed to eat a piece of toast in the late afternoon and a few chips for supper. No need to worry that I’m getting obese – I’m losing weight at the moment simply because I have so many days when I’m too anxious to eat properly or my autistic brain won’t let me eat anything other than milkshakes or whatever the current “thing” is!

My head now knows though, that posting even something apparently innocent can trigger a meltdown and a mess. Maybe I need to approach even online interactions with more caution. Maybe there are people there who haven’t read any of this blog (I’m fairly terrible at promoting either it, or the page, because I can’t quite believe anyone would actually be interested in any of it) and don’t know just how fragile I am at the moment.

Maybe I need to prepare myself for difficult comments because everyone won’t see a pudding as a nice innocent thing.

This is why the world is so complicated and difficult. Doing anything at all seems to bring a whole load of unpredictable consequences. My brain doesn’t cope well with that. It doesn’t understand. And when it reaches its limit, it goes into meltdown.