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.

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4 thoughts on “Be Prepared!”

  1. Dear girl. It’s not bloody fair is it.

    Aside from that, your doc might be persuaded to prescribe the food supplement drinks for invalids. My dad had them when he was terribly ill and unable to eat much. He liked the strawberry flavour best. The neutral flavour made him throw up! Ask for straw or choc. Prescription things, keep the milk shake money for something else, petrol for instance. xx

    Liked by 1 person

  2. I understand everything you have shared and I am wishing you comfort from the other side of the world. I have similar issues with social media. Similar issues to so many that you have been brave enough to share throughout your blog. I found one of your posts by chance. Then I went back to the start and read your whole blog from the beginning. It means a lot to me and I look forward to each email I receive telling me that you have made the effort to write another post. I was diagnosed nearly 5 years ago but I remember the fear and disappointment of going to medical professionals for help then being sent away. One psychiatrist told me that my IQ was high enough to compensate for whatever I thought my problem was and that he was not going to diagnose me with anything. I was stunned and as he escorted me out of his office I had a mental picture of a cartoon cat with claws dug into the wall, tearing through the sheeting, trying to hold on as it is dragged away. Although that part of my struggle is behind me I am facing several issues that have cropped up simultaneously and have caused life in general to become very challenging again.

    Through your blog I feel that I have a companion walking a very difficult path beside me. I have meant to share that with you on several occasions but I know you are often overwhelmed and thought I’d do it some time later. Soon but later. No need to read my long reply in a hurry and no pressure to respond.

    I also prepare for things. The amount of preparation that makes me comfortable is considered almost (if not completely) insane by others. I recently got brave and planned a drive to Sydney, a plane trip to Melbourne, a 2 day cruise back to Sydney followed by a drive home for my husband and I as a surprise for our anniversary (he loves new experiences and usually organises all the anniversary/birthday/Christmas stuff for me). The planning took me the best part of 6 months but by the time we left I was feeling confident and excited. I had a folder with bookings, maps, travel insurance, emails, invoices etc all arranged in the chronological order that I anticipated that we may (or may not) need them. I had gone over every step countless times. I had visualised all the places we needed to go/be and how long each bit would take. I had Googled images of the hotel we would stay at as I had never seen it before, same for the cruise ship (I had never even been on one of them at all!). It is the sort of adventure that my husband rarely gets to share with me. After 6 months of preparation and planning I thought I had it nailed. It was only 3 nights away from home after all. I could do this!

    About 8 hours after leaving home we had arrived at the airport in Melbourne and walked through arrivals to find the shuttle bus promised by the hotel. But it didn’t seem to exist. It slowly dawned on me that everything was all wrong. As the panic rose inside me and it became clear that the paperwork in my folder was not going to help me I started to fall apart. Right there out the front of the airport. With people all walking around me as I stood still and tried to unfreeze my brain. Some guy tried to push bus tickets on us but I refused as this was not part of the “plan”. Eventually I dissolved into tears, handed my husband the folder with the accomodation details, apologised and asked him to just get us there. He tried to reassure me it was OK and he wasn’t at all worried and was still having a great time just being with me. I wasn’t having any of it. I was lost in my own distress. He paid the bus guy and got us on a bus. On the very long bus ride to our hotel I silently wept but had enough space and time to remember that Melbourne has two airports. Our plane had taken us to the “wrong” one.

    I spent the rest of our time away recovering from the Airport Arrival Disaster. Once we got on the ship (which was beautiful and even in my messy state I appreciated it’s palatial beauty) I spent most of my time laying on the bed in our cabin. As a blessing we got upgraded to a penthouse suite and I quite enjoyed my private luxury as I nursed myself back to some sort of equilibrium. Fortunately (apart from being a legend in the general sense) my husband is an independent sort and enjoyed a lot of the cruise solo; checking back in with me for a chat and a bit of company here and there. He thoroughly enjoyed the trip although he was a bit sad for me that I had to spend most of it pulling myself back together. By the time we got home I had mostly recovered from the Airport Arrival Disaster and life went pretty much back to our version of normal.

    That got kind of long but I wanted to share with you the fact that planning and preparation is indeed key and when things don’t go according to plan I really don’t cope without being bailed out to some extent. Also, I wanted to let you know that despite my own keen mind and well thought out opinions I have screened the things I share on FaceBook down to almost zero for much the same reasons as you. It makes me sad that I must be silenced for my own protection but, as you said, it is not worth allowing people to put me through an emotional shredder and bring my life to a grinding halt. As for the people that posted all that rot about your pudding, I find them baffling and have no idea what is wrong with them. Them. Not you 🙂

    Liked by 1 person

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