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.

Memory

I often need a little rant about my memory, but it's the sort of rant you can't really have to real people without sounding like an idiot. I'm assuming real people don't read this but if they do, I hope that they will suspend judgment of me and try and understand what it's like to be like me.

I have a really good memory. I'm not trying to boast (I really hate boasting: other people doing it or me sounding like I am) but it's just a fact that I've gradually come to realise. For years and years I just assumed everyone's was as the same, and it drove me absolutely mad how illogical, inconsistent and plain contradictory people were, and even why they lied. I have come to the conclusion that although we are all some of those things some of the time, a lot of what I thought was that is actually that other people's brain simply don't remember things in the same way mine does.

I'm trying to use this newfound knowledge to stop myself getting so frustrated with people. I'm teaching myself to just answer the question when it's put to me for the 17th (or just second...) time by the same person. I remind myself that when people recall an event or conversation or scene with errors, it's not their fault, their brain just doesn't record conversations word for word.

In this respect it's also helping that my memory is no longer pretty much perfect. I forget things too, and so I can see how it happens to others. I don't know if it's just because I'm getting older (getting on for 30 soon... this could be a whole lot worse in years to come!) or because there are just more things to remember. But this is also hard for me to adjust to because I'm so used to my memory being reliable and being able to recall anything that's happened, that I find it difficult to deal with when I can't remember, or remember wrongly.

Despite the current intermittent failings of my poor old memory, it is still pretty good generally (read here "quite a lot better than most people's"). On first thoughts, who wouldn't want a fantastic memory? You don't lose stuff, you don't have to revise because you already learnt the stuff once in lessons, you don't have confusions because you know what happened in the past, etc etc. This is all very true, and it does make life easier and a lot more efficient in many ways. The trouble comes when you put other people in the equation.

The person with the good memory, if he or she doesn't try to hide it, looks like the annoying know-it-all. It's actually very uncomfortable often knowing that you're right. I find it very hard to let things go that aren't true (unsurprisingly, with the whole autism thing), so even when I stop myself correcting people they can often see it on my face. I don't want to be right, because it makes them feel bad, and it makes me feel bad because I think they think I somehow feel superior through being right. But I don't - I feel worse. It's not anything of my own virtue being able to remember, it's just the way my brain works.

Another, purely selfish reason for not liking having a better memory, is that it's annoying when other people forget! If people move my things, it's a big problem for me, because I know where I had put them, but now I have no idea where they are. I guess if people don't always remember they're used to having to look for stuff. So much time is wasted going over things we should know when we could be doing new things. I used to snooze through half of my AS Psychology lessons because they would go over the same things every lesson, which we'd already covered, so what was the point of listening? Or a current common one, in dancing lessons when working on a syllabus, if the teacher has checked the book and corrected a movement (for example an arm we have been putting in the wrong place), I will retain that correction for evermore, but others will do it right that lesson and then revert to the old way. For a couple of weeks it will look like I'm doing it wrong, until they check again and get corrected again, and I will think "that's what we've been doing all along!"

Over the past couple of years, as I've been more aware of myself and my strengths and weaknesses and how and why I respond to the world, I've developed some techniques to try and appear more normal and less obnoxious. Maybe some of these will be helpful to people, or maybe you think they are a terrible idea. Let me know!

Question and get someone else to find the answer you already know: In the above situation of the dance lesson, I have worked out I can ask "is the arm there in first or fifth?" without sounding like I think I know best. Phrases like "I'm sure we've discussed this but I can't remember whether it was... or... Can we check?" or "hold on, did/didn't we do it like this last week?" (but if they say no don't insist we did!)

Just pretend you don't remember: I don't like this method very much because it's not really truthful and as I mentioned, I really like the truth. But it can be a useful method of not sounding like a pedantic annoying autistic person. Using this method a few times can dilute the unnerving impression of someone that remembers everything to an annoying extent.

Pretend you're not sure: add a disclaimer/say your statement in a slightly questioning of British-ly apologetic manner, for example "I had the vague idea it was this but I'm not certain/don't quote me on that/I'm not sure where I got that from"

Just let it go: I think I need to learn that sometimes it doesn't actually matter. The fact or truth being known may not have any effect on the matter in hand and you may sound like an idiot if you insist on it. But it kind of goes against the grain even writing that, because if people aren't at least truthful and factual to the best of their knowledge, what can you trust and build on? So I think I'll have to work on that one.

Keep your mouth shut: this was the method I adopted until the age of at least 20. I never spoke up about anything. I just assumed that other people knew better, that my opinion or experience was irrelevant. The trouble with this method is that you can end up with a very negative view of yourself, and all the good gets hidden away with the bad so it doesn't benefit anybody else either.

I'm now trying to find a balance of re-finding my old silence, because sometimes it is wise to stay silent (but I need to get control of my face and body for that to work!), and being tactful in finding ways of getting facts into matters where they do need to be known. And of course I'm working on not getting as frustrated with others and myself forgetting, because it is a human thing that happens, not people's choice. We can't magically implant correct memories so we have to be patient with what there is, and everybody accepting they can be wrong is a step in the right direction.

I should mention, this is long term memory we are talking about here. My short term memory can be shocking. I have trouble keeping track of everything I need to do so I live by lists, and if somebody at work asks me what happened yesterday I might have to think really hard before answering!

As always, please feel free to ask questions or share your own experiences :)

What is AS for me?

In no particular order, here are the things that AS means for me in my life.

Uncertainty is a huge issue for me. Maybe the biggest. If someone says "maybe I'll do this" I will spend the next indeterminable time period repeatedly going over the options of what will happen if they do or don't do that thing; how my day will look, what will I need to expect, what will I need to be prepared for, and I will be constantly questioning "does that mean they will do that, or they won't do it or they themselves don't know yet (in which case, again will they or won't they end up doing it?)", trying to work out the probability of each of the myriad possibilities of how the day will run. And the thing they are doing could even just be "I might go and buy milk" or "I might make a cake." If there is any uncertainty at all, the issue will remain in my mind as unresolved, like a flagged or unread email, demanding attention until resolved. If there is any emotional involvement with any of the options the chasing of thoughts escalates and often comes out physically in my body as feeling sick (if worried) or in repetitive gestures like finger wiggling or fist clenching if excited (though I think I manage to keep these down to only in private).


Another aspect of uncertainty is uncertainty of people's expectations. I need clarity in what is expected. I am very happy to do a task for you if I know exactly what you want, but if there are options and I have to guess, it becomes very stressful for me. If I know something is expected but I can't deliver because I don't know what or I don't have the skills, the situation seems inescapable to me and this has been the trigger for quite a high percentage of my 'shutdowns' or whatever you want to call them. The same applies to what is expected of me in a certain situation, for example when I am unsure what or how much I am expected to say, whether somebody is expecting a reply or whether they are making a joke.

Change is difficult to deal with. This can be change in my surroundings, like a rearrangement of furniture (even just a turning around of something on the work surface. Why? Why change things if they're fine? It's all wrong now. Something inside reacts and I don't even know what. It's like my whole world has been turned upside down. I can't work out what it is that I feel, but it's wrong. If someone can explain a reason for the change: e.g. "it makes more space on the surface" this can help) or a change in my expectation for the day. I think this could be linked to uncertainty, because if one thing has changed, how do I know I can rely on anything else to be as expected? As a side note, for me, big changes are often easier than little ones. This is probably because they are usually less sudden, more thought through, more expected and more prepared for. Somebody parking their bike in "my" space is completely unexpected, hits me just when I'm preparing to settle down into my own safe world after people-ing, and makes me want to cry, and sometimes shout and bang (again, why would someone do that?). It takes a while before I come to terms with the fact that I could park my bike elsewhere, and even then that space is wrong and my insides are wrong.

Searching for something else I came across this scale. I wish I could use it to show people how I feel about change. Sometimes I am at least a 7 on matters where other people may not have even realised they have made a change.

Inconsistency makes me all wrong as well. How does it not stick out like a jack-in-the box popping up in your face to people? It might be spelling inconsistency in a document or inconsistency of policy/treatment of people (this is touching on unfairness, which is entirely inexplicable and unacceptable for me), or things moving about (where has someone decided to keep the washing up liquid at work today? Why can't it just live in one place?!), or people saying one thing and doing another. I want to scream and shout "what are you doing? How do you think this is OK?"

The Plan is everything. The first thing that happens when my brain switches on in the morning, before my eyes open or I think about anything else, I work out what day it is and what is happening that day. I flash through what to expect, whom I will see and interact with, roughly how those interactions will go, what I need to take with me and wear (this I will have prepared the night before). Sometimes I know there is a question mark about something, for example, I am going to work but I don't know for sure whether we will be swimming in our swimming session or whether a certain child will be poorly. If I know there is a question mark, I can deal with that, but if something changes unexpectedly that can be more difficult, depending on the change and its implications. The most difficult ones are changes that affect my 'down time' or 'me time': if The Plan was to have the evening in alone and this changes, for example I have to go out unexpectedly, I will be quite stressed about it.

If somebody suggests something that isn't in The Plan I tend to automatically react in the negative. Don't be ridiculous, of course we can't do that. If I have time to adjust, however, I might come round to the idea. Which brings me to:

Time.  Because The Plan is so important in keeping me calm and functioning smoothly, I need time to adjust The Plan in my head if it is going to alter. Some changes I can write in fairly quickly; others can take days or even longer. If you want to go out for lunch, giving me at least a day's notice is probably a good guide.

Also under time, I need regular time to myself. I think of my stress levels, or busy-ness levels (maybe arousal levels in scientific terms?) on a scale, maybe 1-10. On a normal day at work I'm maybe on a 5; a big social gathering of people I don't know would be a 9 or 10. Relaxing at home with my husband is one of my favourite things and bring me down to maybe 2, but the only time I'm 0 is at home on my own. I'm completely me, just being, and that needs to happen a couple of times weekly to allow me to manage the rest of the time.

I also need time to get to know people and feel comfortable in situations. I probably won't call you a friend until we've spent quite a lot of time together and shared quite a lot (and I don't share with just anyone!). I have to learn to trust people and learn whether new situations are safe.

I'm pernickerty, picky and fussy about a lot of things that seem entirely insignificant and baffling to other people. Also on being fussy, certain textures, smells, sounds I really dislike. They don't usually cause me physical pain but make me want to shout or cry or flap and stamp or shake the feeling off my fingers. Bad grammar makes me twitch and it's hard to not say anything about it. The washing should be hung up just so, every fact should be accurate and precise (my memory is annoyingly better than a lot of people's, so when they recall a past event wrongly it's very bothersome, and vagueness is just messy in my head). Things should be where they belong, our days should run according to the timetable in my head (The Plan, I suppose), and everything should be predictable.

Related to this, I can be a bit of a perfectionist. If I'm going to do something I want to do it properly, to the best of my ability (or better, quite often!). This means I can often be unsatisfied with my work or not seem to value it or take pride in it, whereas it may just be that I'm not quite satisfied that it was perfect, or I'm disappointed that I couldn't make it as good as I wanted. It can also mean that I'm not the quickest worker on the block. The job might take longer but it will be thorough and accurate if I have my way. I also struggle with guilt when I think I could have done something better and this goes for relationships as well as tasks.

I'm honest. You can generally rely on me to tell the truth. Usually whether it's wanted or not. I try and be socially acceptable in this department, though I don't get it right every time. But I won't lie to you and will always give my honest opinion. You can rely on me to be loyal to my friends, do my best to do the right thing, be fair, and look after the underdog.

Not me. I only dream of such an attitude!

I have some interests. I'm quite interested in them. I like to spend a lot of time pursuing them. They are calming and predictable and very enjoyable. I find it difficult when I can't do them.

I am very caring. I want to look after people and for them to be OK. I hate it when people are mistreated or sad. It doesn't necessarily make me sad, though it can do, but it is wrong and I feel a very strong sense of care or pity for the person involved. I will be there for the person that needs me, especially if I know how to help (annoyingly, I don't always - understanding and responding to emotions can be tricky - but that has been covered in other posts). Sometimes all you need to do is sit with somebody or give them a hug.

I like animals too. Weirdly, I feel like we sort of understand each other. And they are nice to cuddle and don't ask questions or talk to you. They aren't complicated!

Decisions are difficult (but there's a separate post for that). I see so many aspects to consider, and so many pros and cons.

I sometimes get overwhelmed (by my or others' emotions, or by a lot of social effort, or something unexpected) and need to get away. If it's too sudden, I might have a bit of a shutdown, which for me often includes crying and shaking. I can't talk to people and I can't look at them for a while afterwards (my eyes are usually shut during most of it). If it's not bad enough to cause a shutdown (which thankfully I don't get too often), I can take some time to myself at home alone and watch some TV, read or think to recover. Sometimes being outside in nature alone can serve the same purpose.

I look at language a bit differently. I rather like it, and sometimes I like to play with it. I understand most simile and metaphor, and quite like them really, seeing them as a bit of an art, but I often take things literally if I don't recognise them as figurative language. If there is more than one possible interpretation of something, for some reason I don't always see the one most people see first first (my Mum says I always seem to pick the least obvious interpretation). People can think I'm being awkward, but usually it is me genuinely having to search for the right understanding for the context. I like humour and like to make people laugh. I used to be rather a punner but not so much any more, but I still enjoy playing with language.

"As much use as a chocolate teapot" is one of my favourite similes :)

Creativity is something I have a love-hate relationship with. I love the idea, but I'm actually not very good at it and find it quite scary and very pressuring and stressful if someone is watching or expecting a result. This is quite entertaining when you think that my passion until I was about 20 was music, and from then on, dance. I love to do them, but I cannot create them for love nor money. Improvisation always made me feel sick and clam up. I can't compose for toffee. Or even chocolate, which I prefer to toffee. I could never write a story from my imagination: in primary school I dreamt

The story was about an
escaped hamster!

up one story based on true events and adapted it to fit every brief. But I really do appreciate the creative arts. I can get lost listening to music or watching dance and in a room on my own I put creative expression into music or dance where the notes/steps have already been written. Particularly with dance, though, I also appreciate the technical side more than perhaps most enthusiasts. I would watch class with at least as much pleasure as a performance and I don't need a story to enjoy a performance (it can even become overwhelming if I let myself be drawn into an emotional story eg. Swan Lake or Giselle). I find it very difficult to encourage the children in my class with role play and imaginative play because I can't think of how to extend what they're doing.

Nearly forgot about this one as it's so obvious, but social situations are also a challenge for me. The more people the worse it is, the less I know them the worse it is, and the more expected of me/attention on me the worse it is. I worry beforehand about whom I will talk to, what I will say, what I will do if I can't find the answer to either of these, when and how I will leave, whether I will say anything inappropriate, whether I will be boring, whether I will say enough or too much, whether I will look ok, whether I will do any silly things with my body, etc etc. When I am there I am still worrying about most of these things, especially how to carry on a conversation and things like that. A lot of worrying and feeling sick, and I will be tired for several days afterwards if it was a big one. It is just exhausting making sure you're doing everything right!

Help!

Small gatherings of up to 5 or 6 where a family member is at least one are manageable and don't put me down on social energy for too long, and I even enjoy these sometimes.

In addition to the feelings brought on by the event itself I also struggle with feeling guilty for not enjoying an event which is obviously supposed to be pleasant, which somebody has put on for everybody to enjoy and maybe even partly for me, so then I may have to make sure I adequately persuade that person that I have enjoyed it, even while trying to recover from the strain it has put me under.

Even just a break in the staff room or a meeting in the corridor can count as a stressful social encounter: what do I say? Where do I look? How do I finish the conversation? Is it bad to sit and not say anything? Can I make my drink last the whole break/Do I look daft sitting not talking with an empty cup? Is it OK to join in someone else's conversation/nod and smile as though joining in with it?

Communication can be difficult. Although I am a very language-minded person it can be quite difficult to express myself properly about important things. Often I only think of what I should have told somebody or asked them quite a while after a conversation has happened. This can mean I can seem rude unintentionally, I can miss out on opportunities, my opinion can be overlooked (well, not expressed to the relevant party rather than necessarily overlooked by them) and I can become frustrated. Sometimes I don't know what I want to express, other times I don't know how to express it, and others I just can't make myself do it at the right time and place. I work better in written communication where I have time to consider matters, think about my real response to them and formulate that into something that will be understood properly by others.

I am funny and silly and clever and quirky. I have a great time with a few good friends and we enjoy each others' company. I might not be everyone's cup of tea but if we get along we really get along. I stick by my friends and we help each other through all sorts and have a lot of laughs on the way.

These are just the main ways I can think of at the moment of what AS means to me, for my life, but I feel like I could keep writing forever, or at least enough to fill a book! I might update if other important things come to mind. I also have a big list of quotes from a few books (Asperger's Sydrome, A Guide for Parents and Professionals, T. Attwood; Inside Asperger's Looking Out, K. Hoopmann; and Finding AS in the Family - A book of answers, C. Lawrence) that I felt really were pertinent to me when I was reading around before diagnosis, if that is of interest to anybody.