Baden-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.