How exhaustion and stress affect autistic "symptoms"

Having had a bit of a manic week (with another one to come), I have been forced to observe the effects of being overtired both physically and mentally on how my autism presents.

I have often noticed, and it is hardly surprising that in case, life isn't already hard enough when circumstances are difficult, our brains and bodies seem to think it's a great idea to join the party and make it even harder.

This is clearly not just an issue for autistic people as it is natural to find our coping resources depleted when we do not have time or energy to engage in those things that normally keep us well in body and mind. We all notice that it is harder to maintain an even keel emotionally, to make good decisions, to look after ourselves and others when we are tired or stretched, but I wanted to talk about the specific effects it has on my autistic traits, in case that is new or of interest for anyone.

So without further ado - differences I have noticed this week:

Sound sensitivity
Being around a lot of noisy people, or a particular sound that normally I can cope with I have found overwhelming this week. When this happens I can't see a solution/escape and feel trapped which makes me even more panicky and overwhelmed. Being aware of this helps as I can sometimes rationalise and stop to look for a solution. Otherwise, sometimes one is provided by somebody who has picked up on my situation (a lovely person did that once this week!).

Lack of social filtering
I become more abrupt and less filtered in what I say. I forget to be socially acceptable and just say things as I see them. This can result in people seeing me as rude (understandably, as I probably am being rude!), weird or snappy, which is sad for me.

Tactile sensitivity
Labels in clothes that I normally don't mind begin to bother me! I also seek more regulatory tactile sensations such as my blanket, BFRBs (body-focused repetitive behaviours) etc.

Increased intolerance for change/error
Fairly self-explanatory. Change, the unexpected and people doing things "wrong". If I can buy some extra processing time this can sometimes be managed, otherwise the upheaval of trying to readjust my brain to accommodate the anomaly can lead to overload or use of negative coping mechanisms.

Increased intolerance for failure
Any perceived error on my part can also easily become overwhelming. The thoughts can easily lead to overload or use of negative coping mechanisms, feeding into my mental health disorder and trying to bring me back into destructive cycles of thought and behaviour if I can't engage in some CFT (compassion-focused therapy) techniques or counter the thoughts with something believable but less unkind.

Decrease in emotional regulation
Again quite obvious. It's much easier for me to become dysregulated by any little thing that may happen, and harder for me to bring myself back to functionality. I'm much more likely to have shutdowns or need extra time to use soothing methods and keep myself calm.

Decrease in ability to communicate
Even if I can cognitively rationalise what is happening, I am much less able to convey that to somebody else. It's like my brain shuts down that possibility so that even if I want to, I can't just tell somebody that I am having a problem and what that problem is. It's as if that is just too much, too big or important, or it would dissolve me or something. It's rather difficult to explain, actually.

Decreased capacity for being with people
People are just too exhausting! Because of the energy it takes to be with people, to think of things to say, to make sure they're acceptable things, to try and make sure I do all the right things in a conversation (answer questions with just the right amount of details, ask questions, but not the exact same ones, use the right level of formality of language, don't do anything stupid with your body, finish the interaction correctly, etc etc etc), when I am tired or my brain is full, I just don't have the capacity for much of this.

Bad sleep
It's very rare for me to sleep badly. I am the one who will sleep through anything, always struggles to wake up in the morning, steals all the duvet and kicks/generally bashes about Mr Peggy each night! But this week I was plagued by anxiety dreams, and a strange brand of them too, not just the usual ones but ones set into a nice life-like situation from a few years ago to make it particularly hard-hitting and the effects longer-lasting into the day (my usual anxiety dreams are about waves, tides or being late for things. Oh, and sometimes teeth falling out!). I also unaccountably woke up several times during the night and one morning even woke up at 5.30 wide awake. This is unheard of in the Peggy household (for me anyway!). And of course doesn't help the cycle of exhaustion.

Processing time
When the stress and exhaustion ramp up or last longer than a few days I also see a noticeable increase in processing time and brain speed. This can range from taking a long time to find words (just everyday ones like "handle" this week!) to taking things more literally than usual or not seeing the meaning of what somebody has said to me. Often it only clicks several hours after a conversation that I completely misunderstood what somebody was getting at! When it's really bad it even affects written communication if things are not spelled out completely explicitly.

There are probably other things as well, but just some quick thoughts, and an apology to all those who have suffered from my various deficits this week! It is frustrating when these kinds of problems come into play because I am normally relatively good at presenting a rough basic level of "socially acceptable" (and when I'm not it's usually for things that are "weird" rather than negative, like carrying a blanket with me or lying on the floor rather than being rude), so people are not used to making allowances for my social communication difficulties and just see rudeness/withdrawal/strange over-reactions. Hopefully the weekend will help, and by the time next week is over I can begin to get back to normality!

A sensory processing meditation

Imagine it’s Monday morning.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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