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!

Full up

I'm often trying to find ways to explain what it's like being me, or what it's like inside me when I look or behave a certain way on the outside.

I've been using one phrase recently that I think reflects it in a relatable way: I'm full up. It's what I might previously have described as feeling grumpy (and still do sometimes) or extra-autism-y, but it's not really just grumpiness, and it's one particular sub-set of being extra-autism-y. A particular type of Square Day.

Many of the children I work with are on the autistic spectrum and some colleagues and I were talking a while ago about how unsettling Christmas can be for the children because they need and are used to a low stimulus environment. Suddenly displays start going up all over the walls, their routines change to accommodate Christmas activities and all sorts of other things bombard them.

Which room makes you feel calmer?

The phrase "low-stimulus environment" suddenly made me think. I've never really thought of myself as someone that has big sensory issues and I certainly don't get sensory overload, though I do get social/emotional overload to varying extents at times. But I suddenly realised that when I get grumpy and feel irritable and don't want to answer questions or talk to people or look at them, it's because I'm already full up.

It's like there's no room inside for the extra words or sounds or touch or visual information. Any input seems like too much.  I don't get the thing where everything mashes together like you see in the YouTube simulations of sensory overload, and I would rarely have a meltdown or shutdown: I would control my response and reaction while with people, to present one that is outwardly reasonable although it may seem a bit irritated for no apparent reason.To any onlooker, it's probably a subtle, almost unnoticeable change, but inside I'm getting fuller and fuller and it takes more and more effort to keep the lid on. I suppose it's the background social/emotional/general stress/anxiety levels that are making me full up, but the result of that is that I can't tolerate any physical stimulus either.

In this situation I have no capacity to give out any of those things that are too much to receive either (e.g. answers, words, eye contact). This can be hard for those around me if they don't understand, as I just appear to be withdrawn, and I can't enter into conversation about it, probably just saying I'm fine. I'm getting better though - sometimes I can say I'm feeling grumpy and it's not their fault or something to that effect.

The best treatment is to leave me alone and completely minimise input of all varieties, which is fine for a day or a few hours, but it's really tricky when I go through a patch of feeling like that most of the time. It's not fair or realistic for people like Mr Peggy to stop giving me input or receiving from me. Any ideas how to manage times like this?

While I've been exploring this thread of thought and beginning to understand a bit better, I've also been thinking about how stress levels from different stimuli interact and cause different effects in me: the outcome or "symptom" of the stress often seems entirely unrelated to the cause of the stress, which I find quite confusing, but I think it works something like this:

Specific stress IN                                                                          Specific noticeable "symptoms" OUT

eg.          unexpected change                                                                                   eg.    avoiding eye contact

               waiting for something      ➘                                                                     ➚         irritable at questions 

  having to make decisions ➙ General stress/anxiety/arousal levels rising  ➙     not talking    

              being tired                        ➚                                                                       ➘       stimming but not       

         a horrible smell                                                                                                    touching others   

This accounts for how I can be experiencing the "symptoms" of being full up but not recognise a related or specific trigger. It's like there's a transformer inside, masking the nature of the input, so it can be a mystery to work out what's really going on!


So after that ramble, I think what I'm trying to say is that being full up is a comfortable way I've found to describe that mental state where the background level of stress/anxiety/stimulation from any one or a variety of causes has got to the point where even any extra sensory input makes me want to snap, and that the causes of this state may not be blindingly obvious or apparently related to the type of stress I am showing. It was a pretty groundbreaking realisation for me, but probably common sense to others! I'd be interested to hear whether others identify with this so do let me know by commenting or sending a message.

On a Square Day

I've been having a lot of 'Square Days' recently. I'm rather chuffed with the description actually: the hunt for a word to explain these days is finally over!

The search began when I wanted to express that some days are different from others. We all have good days and bad days and ones where we just shouldn't have got out of bed, but I was struggling with the fact that some times I just seem to feel a lot more 'autistic' than others. But autism is most definitely not a feeling. I'm not sometimes autistic and sometimes not, so it seemed really strange to say I was feeling particularly autistic that day.

I asked a few other people what they thought on the matter. Everyone reported that they too felt more severely affected at times, especially when tired, stressed, ill or anxious. Perhaps I wasn't so far off the mark then! But I still didn't like the phrase (maybe because most people don't know of my diagnosis so it would seem rude and insensitive to people with autism to them if not just plain weird).

I decided to write about it anyway, as I think it's an important thing for people to understand, so I came to my blog to start writing and read my title 'Square Peggy'. It just fit perfectly.

I've just collected a few initial thoughts about what it's like to be me when I'm extra square.

On a Square Day I:

• feel very vulnerable
• may be irritable
• may not like talking, particularly answering questions
• may get overwhelmed by a seemingly tiny task
• am much more likely to shut down
• need more sensory input to make me feel calm and safe, so I tend to stim more and seek comforting touch from someone I trust
• take longer to process language and situations
• tend to avoid risky/unsafe/scary things more, for example eye contact
• may be very emotional
• may seem not to care or be very responsive (usually due to being very emotional)
• find it difficult to join in conversations and may be quieter than normal
• need my own space

I'll probably add to that list as time goes on - those are just thoughts off the top of my head. Please share your own experiences in the comments or send me a message. And please ask if you have any questions or would like more detail on any area. Thanks!