How to brush your teeth: What on earth is executive functioning?

I promised a post on executive function a while ago. Ironically it has been delayed because it took me so long to collect my thoughts and work out how to put them into words!

Executive function is a funny phrase that doesn't really explain itself very well. I think it sounds like a very vague term for nothing in particular, or that top boss who's technically in charge of everything but doesn't actually do anything in particular. Well, in some ways it is a bit like that! Executive function is your brain's organising and ordering of its own self. 

It's what helps you work out what you need to do, when you need to do it, and how to do it, from something as "simple" as brushing your teeth (do it after your last meal, before you go to bed - perhaps it has a more precise spot in your evening (and morning...) routine which we'll touch on later - pick up toothbrush in one hand, toothpaste in the other, open toothpaste tube, squeeze a pea-sized blob onto toothbrush, close toothpaste tube and put it down, turn tap on, wet toothbrush under tap, you get the idea...) to complex tasks like driving, mathematics or writing a book. The unsung hero without which we would not order any task - ever tried to make tea without boiling the kettle? - or switch between tasks, or work towards any goal. Sequencing, memory, decision making, paying attention, starting/finishing/ordering tasks, flexibility (of thinking, rather than body...), self control, emotional regulation and problem solving are all the jurisdiction of executive function. 

Some brains, for example those described as autistic or having ADHD, have a bit of a different operating system. Life would be boring if all computers ran Windows, after all. These operating systems may prefer to do only one thing at a time rather than running several programmes simultaneously. Perhaps they need each task to finish before the next can begin. They may have a favourite programme that runs more easily than others or likes to take precedence over whatever else is trying to run. 

This can often be fantastic - when only one programme is running it may run at great efficiency and is highly accurate. It gives a satisfying and detailed picture to the viewer. Jobs are done thoroughly and to a high specification and often enjoyed. 

However, in a world that more often runs a different operating system which expects more flexibility and variation and prioritises specific tasks that are valued by society, this can cause difficulties for any of the parties involved. If you're expecting to interact with one operating system it's a shock to be met with another. Many people only know how to work with one operating system and find it difficult to navigate others. 

Autistic operating systems can require a significant amount more preparation to switch tasks. They may evaluate the relative urgency of tasks differently from others or evaluate all as equal (brain explodes here because there is no deciding factor for which to begin first). They may not have filters for incoming data (sensory or social or emotional input), which can derail the task in hand. If a task is derailed they may not have the instructions pre-programmed to resume mid-task and may need to restart from factory settings. They may not have reliable filters identifying which information is relevant, or most relevant, and therefore flounder in decision making tasks as the options, pros and cons are overwhelming. 

What a lot of metaphor. What does this mean in my day to day in my life? 

It means that I rely heavily on routines to compensate for my differences in processing. I mostly have pretty good ways of getting by, until something interrupts my compensation strategies and I realise just how difficult my system finds some things when it's not fore-armed to deal with them. 

A beautiful example: on my first few days at home after living in hospital for months, it took me forever to get myself into bed. I would stand in the bathroom looking blankly around me wondering what I needed to do, or I would pick up the wrong items for the task in hand, or get into bed and realise I still had my contact lenses in. 

In my then familiar environment of my bedroom on the ward, everything was where it should be, each task happened in the same order each night and bedtime was smoothly accomplished in a few minutes. Take away that muscle memory routine and I had no idea how to go to bed! I knew the title of what needed to happen: "go to bed", but had lost the step by step instructions and didn't know how to to it. Imagine having to think through every step of the toothpaste scenario described earlier. And then remember to do the same for changing into pyjamas, using the toilet and removing contact lenses. It's exhausting. A window into what it's like when autistic people have their routines removed or interrupted. Exhaustion brings a reduction in coping resources and executive function, and you can see how the spiral spirals. 

How many plates?!

Only yesterday I had a spectacular moment of abandonment by my executive functioning system. I had cooked the tea and discussed with Mr Peggy and a socially distanced Ma Peggy how I was going to portion it to find out how much raw ingredient I need to make the right sized cooked portion. When it came to the time, I just couldn't figure out how to organise myself to portion up three platefuls of food and find out how many portions were left. Did I need to get out about 8 plates to portion every portion out? Where would I put all those plates? That would make a lot of washing up. But if I put all the spares in one place how will I know how many there are? Perhaps I should measure one portion at a time and then put them back into a communal tub, thus using only one plate? If I portioned them all up straight away the ones to eat now might go cold. And a thousand other confusing thoughts and questions. Luckily I recognised the signs of overload and asked the Peggies what to do! I often end up taking a lot longer to do tasks or doing them in a way that seems overly complicated or inefficient to others, because my brain has found a way to do it that works. I may stick with this method if I do that task again in future, because I have done it before. It takes a lot of time and thought for me to reprogram to a new way of doing something even if it is simpler.

Routines help me through every part of my day, usually subconsciously. Leaving the house, getting up, arriving somewhere. Most of my belongings have a place, so I know where to find them. It takes a lot of brain power to look for things (start with places it might logically be, but then imagine where somebody else might put it in their logic, but that may not seem at all logical so then you are looking literally everywhere!), and the looking interrupts the task, so once the item is found the task may have to begin again. So I like to be able to rely on them being where I expect them to be. These little routines and habits are not exclusive to people with executive function differences (how many people wash themselves in the same order every time they shower or get irritable when their keys are not where they left them?), but people like me tend to have more of them and rely more heavily on them. It distresses me when things are not where they should be and when things do not happen as they should happen or I am expecting them to happen because I have to reset my whole brain. 

I also use longer-term routines to help me make sense of the world and the passage of time, and to help me know what to expect - predictability and familiarity, in case you hadn't yet noted, help the busy brain. I always to the washing on a Saturday. I clean out the guinea pigs on a Sunday. I do the weekly shop on a Friday afternoon. I go to certain classes (eg. yoga) on certain days. I feel more like I understand and can predict the world this way, and then I can relax a little. When these weekly rhythm routines are disturbed I have to spend a lot of energy on constantly notifying to myself what day it is, when the next "normal" thing will happen to try and get me back on track. 

I use lists nearly all the time, especially lists of "to do" and "to get." Otherwise the items zap around in my head demanding attention, until the moment when I needed to remember, by which time they have toddled off for a brief nap only to resurface when it's too late! When preparing for a particularly busy day I make a chronological list of each step I need to accomplish, so I'm not grappling with trying to remember, prioritise and sequence it as I go along (this is basically a version of  a visual timetable; a tool used throughout the special needs school where I work).

I have to reply to messages as soon as I open them or I won't remember! If there is a pending communication, woe betide if it doesn't make it to my to do list (please tell me if I owe you a communication!!).

Little familiarities that can be used across contexts can be helpful. Using my own equipment (eg. pen/notebook/blanket/toiletries/car/cutlery etc etc) and doing things my own way even in a new situation can help. If I have a "soap bag" evening routine for travelling, this night mean I can more easily get to bed in a hotel or friend's house even though the environment is not familiar, because the soap bag, its contents and the routine I follow with them are the same, which reduces the newness and therefore processing involved the task.

Throughout childhood and my teenage years I would have minor shutdowns from getting too hungry and then needing to make a decision. Decision making is still a major trigger for shutdown: my brain just can't process and prioritise all the variables but can't produce an answer unless it has a deciding factor, so it crashes, much like a computer. 

I think I've spoken a lot elsewhere about emotional regulation and some of my problems and helpful tools in this area, so I won't go into that now, but please do ask if you'd like to know about that.

Factors such as tiredness, emotional dysregulation, sensory dysregulation and non-availability of routines (including unprectictable events, changes to plans or unfamiliarity in some aspect of my situation) can affect my executive functioning levels and therefore my ability to a) complete tasks at all, b) do it in a timely or effective fashion, c) prioritise usefully or d) make decisions. 

Everybody has these experiences from time to time, perhaps when overtired or stressed - we all struggle to make "wise" choices when in these states and perhaps spend more or drink more than we would otherwise. We forget what was on the shopping list, or to pick up the shopping list. We lose one of the tasks when multitasking. You need to stop, retrace, recoup, and continue. That is a laspe in your executive function - just imagine every task being like that every day, and finding it much more difficult to get back on track afterwards! 

The beauty of a reasonable adjustment

Oh bless the beautiful little cotton socks of my GP surgery (and the invention of the SHOUT service that does not require verbal communication, and the people who have worked to help me accept my needs).

With the encouragement of the volunteer on the SHOUT line last night, I psyched myself up for one last phone call (feel I'm doing well on the resilience front here!), to my GP surgery, to explain my situation and ask for help.

I went in autism-focused, spiel written, and began with "I will read it out. Please don't interrupt until the end because I have autism and will get mixed up." She listened and waited until I had finished, before asking if she could continue. She said she would get a doctor to ring me back.

And here we reach the climax of the work I have achieved: instead of being a good patient (or just being overwhelmed and on autopilot) I responded that that would be a difficult problem!! And the beautiful woman uttered glorious words, the like of which have never previously been heard from the mouth of a GP receptionist (or something...): "would email be any better?"

Dear lady you, you, are the Queen. Nothing would be better than email. 

Happy 6th Birthday!

I realised today that this week marks 6 years since my diagnosis and due to a conversation I had during the week I thought it might be a good opportunity to think and write about what my diagnosis means to me now and how that has changed through the years.

This assessment concludes that [Peggy] does have Asperger Syndrome and meets the criteria of the DSM-IV and ICD-10 due to difficulties in:  

1. Social Communication
2. Social Interaction
3. Flexibility of Thought
4. Unusual Sensory Experience

And there we have it. Just like that, I was autistic. The report was nine pages long, and reflected a little more deeply on the details but that's the bit that says it, that changes my categorisation as a human being.

Of course, it doesn't change who I am and always have been one iota: the sentences following the one above declare that "The information provided by [Peggy] and her family indicate these difficulties have been present from a young age. Over time, she has developed a wide range of impressive coping strategies to manage her difficulties in social communication and interaction - often masking the degree of these difficulties so that others are perhaps unaware of their impact."

I consider myself lucky that the process and the report were smooth for me, and the approach very balanced: both the difficulties and the benefits of being autistic were highlighted and addressed in terms of their pertinence in my own life. Reading stark facts like the quote above can feel jarring, but they were given in a context where care was taken to specify my strengths and potential alongside; a lesson that I hear could be applied elsewhere. I wrote a little about the lead up to my diagnosis and initial reactions in my first ever post on the blog, Officially Square.

That post was written nearly three years after my diagnosis and at that point there were very few people party to that information about me. Three family members, my fiance, two friends (I think... or I may not have told them by then) and two or three colleagues. I didn't publicise my blog in case someone figured out that it was mine. I swore everyone that knew to secrecy.

From this behaviour you would be forgiven for thinking that I was ashamed of my diagnosis. On the contrary, I was hugely relieved and mostly very happy to receive official confirmation of what I had suspected for the previous three years. It made sense of my struggles since childhood (that I had obviously failed to share with anyone because, you know, social communication...), my different experiences of the world and my differing needs. I'm not wrong, I'm just a different kind of person and sometimes I need to live a little differently, and that's just fine. In fact, it's good in many ways. I can understand myself better now, work with my strengths, learn ways to cope with my difficulties (still working on that!!) and explain myself to others with more confidence and accept my differences with self-compassion (sometimes...).

So why was I so adamant that nobody find out? One reason was that I was terrified they wouldn't believe me and would think I was making it up either as an excuse or to gain attention. As pointed out above, I have an impressive array of masking strategies, so to disbelieve my diagnosis is in a way complimentary to my efforts, but it would also greatly invalidate my hard work and times of intense distress. I wasn't confident enough at that point to defend my diagnosis because it still didn't feel quite right that I really qualified to be described by the criteria above. Six years of self-observation leave me rather more convinced. Along with the fact that not a single soul has challenged the diagnosis, though many have shown surprise.

I also worried that people would look at me differently once they knew. To a certain extent this still applies. Perhaps not so much as a worry, but I like to choose when and whether I disclose. I worked for my mask and I usually still use it when I meet people because I don't want their impression of me to be formed by their idea of autism; rather, I want to inform their idea of autism. I am me, and me is autistic, so this is one way autism can look. Not, she is autistic so she must be [insert characteristic/behaviour here].

As time went by and I gradually needed to inform more people (changing jobs was the main catalyst for this) I discovered a pretty much universally positive reaction to disclosure. My first experiences weren't just a happy coincidence, but most people find it interesting and useful to find this out about me (assuming we already have a positive relationship), and it helps them to be considerate of things that I find really difficult. 

So nowadays I don't hide my diagnosis, and I tend to mask less. I don't wander round telling people just for the fun of it and there are still more people who don't know that do know, but I can talk about it as a normal part of conversation and this has been helpful in many ways. I accept myself and my needs because I understand why I am how I am. I am becoming more confident in saying I'm not going to do things because I know they will make me unwell or increase my stress levels, and I don't have to be the same as other people in order to be a worthy member of the human race. If something is bothering me I'm more likely to verbalise that now, and even if it doesn't change the situation it helps my internal state. I will engage is certain regulatory behaviours in some public or social situations because I know those people won't bat an eyelid because they know me (there are many others I still keep private). Because I have shared, my colleagues can help me when I'm in crisis, and they can help prevent me getting to crisis.

Was it worth seeking a diagnosis for something I already pretty much knew? For me, yes. And even more so than at the beginning. Personally (and this is not the same for everyone), I could not have assimilated autism into my understanding of myself without a formal diagnosis. I needed that to begin to accept that I genuinely have a reason for what I now know are my autistic traits. I'm not just wrong or weird (although I am pretty weird!). I can get the support I need at work, which I wouldn't necessarily without a diagnosis. I understand and therefore accept and can help myself so much more than I would be able to without knowing this about myself, and I can help others help me too, and I can broaden their world by exposing them to people whose brains work a bit differently. 

Am I proud of being autistic? Not particularly. Am I ashamed of being autistic? No. I just am. Would I be proud of being 5'7"? Or ashamed of having size 6 feet? These are all just thing about me and knowing about them helps (imagine trying to buy shoes if you didn't know what size your feet were. It would take a lot more effort!).

Happy 6 years.

Please ask if you have questions about my experiences pre- or post-diagnosis - I feel like I haven't quite managed to capture everything here and different nuggets will be helpful to different people at different times :)