Strategy Deployment

Yesterday I went out again, to something social, where I met quite a lot of people, and where I was out of the house for quite a lot of hours. I went to an afternoon symposium, a series of lectures, then to dinner, once again in my old college.

I employed similar planning strategies to those described in Out to Dinner: a couple of days’ rest beforehand, comfortable clothes, stim toys, dark glasses, and plans for an easy couple of days afterwards so I knew that I could take my energy levels into the red zone if necessary because once I was home I didn’t have to do anything at all except breathe (and that’s something that usually happens without my having to think about it).

Additionally I took some attenuating ear plugs (originally bought for potential use in noisy orchestras and recently discovered in a pile of stuff) and my recently acquired ear defenders, just in case I found a way that I could usefully use them.

It was an interesting afternoon and evening in many ways. It was interesting in the ordinary way in that I learnt some stuff from each of the lectures. I also saw several people I hadn’t seen for a few years, and some others I’ve seen more recently, and it was good to catch up with them. And, of course, it provided me with an opportunity to continue analyzing what I can cope with when I’m out in the world, and what I can’t.

Apart from the dark glasses and slightly more casual clothes than was the norm, the first thing that might have been described as slightly out of the ordinary behaviour was the way I sat during the lectures. I took my boots off and sat with my feet tucked under me, my legs up close to my body, in various formations throughout the afternoon. I nearly always sit, by choice, in some variant of this position.

Very interestingly, I went to a similar symposium in that very same lecture theatre a couple of years ago. I remembered sitting in exactly the same way. I wasn’t wearing dark glasses, but my clothes were still slightly more casual and I sat with my feet tucked up under me in the same way. And that was years before I knew anything about autism, about the beneficial effects of “pressure stimming” (I still have a whole blog post to write about that stuff sometime), and before I realized that I was doing something, perhaps a bit socially out of the ordinary, because that was something that my body needed to do in order to feel OK.

(As an aside, I made no other adaptions on that occasion a few years ago – and I remember it being one of the nights that I woke up in the small hours afterwards feeling sick, shaky and very very wrong – that was always the norm for me after such events. Now things are changing.)

My first real break with “doing what everyone else was doing” was at the tea break between sessions. I used the strategy that I’m now getting used to during the breaks of orchestral rehearsals – get myself a cup of tea then get out of the room with the voices and the noise and the crowds of people as quickly as possible. I went to stand outside in the quadrangle. I was joined by a friend (the one mentioned in the first sentence of Out to Dinner), who gave me a biscuit (a good idea, since I hadn’t yet managed to eat) and asked whether I was OK with him being there or whether I needed to be alone. Since I’m comfortable with him and he knows what’s going on in my life I was happy for him to stay. It wasn’t difficult out in the cool air away from the artificial lights and the noise of too many voices.

When we went back for the second session I knew that my senses were already beginning to tire as the sounds of the voices of those speaking seemed much much louder than they had done during the first session. I decided to try the earplugs. They helped. And not only did they help with reducing the volume of the speaker’s voice to a manageable level, but they really really helped with one of the most painful noises of all – applause. I’m now trying to work out whether there’s any way I can use them in concerts, because applause is a sound that I’ve always found, at best, unpleasant, and at worst, really very painful.

I also felt perfectly justified in wearing something in my ears to alter my hearing perception because there were several in the audience also wearing things in their ears – though they were trying to enhance their hearing and I was trying to reduce mine!

Interestingly, I also looked round to see what other people were doing in terms of stimming. I noticed someone rubbing their hands, someone playing with a pen, and someone jiggling their legs and playing with the hem of their trousers! I’m noticing all these things much more nowadays (again, there’s a whole blog post to be written about this – I have so many things I want to write about, but I can’t make all the words at once)!

After the second session there was a drinks reception in a very reverberant space. I stayed for only a few minutes because I knew it was seriously overtaxing my system. I left everyone else to it and went outside and sat on a step, rocking, in the twilight (and the freezing cold – really should have taken a coat) and put my ear defenders on. I was there for maybe half an hour until the cold got the better of me and I ventured back inside, still wearing my ear defenders, and eventually found a couple of friends and we headed off to dinner.

That time alone, cutting the world out, making everything as silent as possible (not completely silent, but significantly better), and stopping all interaction or worrying about sitting still, really really helped. I would have liked to be at the reception. I would have liked to have been drinking wine instead of elderflower fizzy stuff, I would have liked to be networking, chatting to friends, catching up with everyone, looking at the exhibits and so on, but I am learning that this is the sort of thing that I need to ration very very heavily in order to be able to stay well. This is one of the ways in which I am, perhaps, most disabled – I cannot take part in events such as noisy drinks receptions for any length of time unless I accept that it will have a seriously negative impact upon my health. I have long known that parties and so on tire me beyond belief and cause me to become seriously unwell afterwards – I do at least now know why and I can start to control things a bit.

Refreshed from my “time out”, I was then able to go into dinner, chat to people around me with some confidence, and to spend an evening in the Common Room, which actually turned out even to be enjoyable. My best friend ensured I was sitting in a reasonably advantageous position at dinner (as close to a corner as possible to avoid sensory input from all directions), I took care not to over eat, as before, and later, when I started to feel slightly dizzy and unable to comprehend words while standing and increasingly failing to take part in a group conversation, I went to sit down. I’ve also discovered that I find conversation much easier when I’m seated – If I’m not using energy to stand then I have more available to be able to convert thoughts to words!

So this week’s “event” went well. It was also easier than previous times doing similar things have been. I suspect this is partly because I’m starting to see a bit of recovery from burnout, partly because I have a new-found confidence following my diagnosis (more on that in a future post), and partly because I’m learning what strategies work to help me get through such an event without ending up sick for days afterwards.

Admittedly, I had to adapt my behaviour quite considerably yesterday, I didn’t get out of bed until after 2pm today, and I wouldn’t have been able to hold much of a conversation this morning (I tried a little speech earlier but it was really hard work and since I’m here alone I didn’t even bother using that amount of energy for anything more than experimental purposes), but it’s progress. It’s working out how I can best function in the world and get the most possible out of life without destroying myself in the process!

Looking at Eyes

I was chatting on Facebook messenger with a friend of mine. We’ve been friends around 5 years, and she is probably, after my husband and best friend, the person I see most regularly in real life.

“So what colour are my eyes then?” she asked.

I paused for a moment, thought about her hair, which she dyes dark red, and it seems to match her skin, so I guess that before she dyed it it must have been dark. “Brown!” I respond.

“Er, no, they’re blue actually.”

She then asked me about the eyes of a mutual friend who I also see quite a lot in real life. Even darker dyed hair. I was confident about this one. Much more obvious. “Definitely brown,” I said.

“Nope, wrong again, she’s another like me with dark hair and blue eyes, except that hers are greyer than mine.”

I really wasn’t very good at this eye colour game. So far 0/2 on the eye colour score!

“Her mouth wiggles a bit at the corner sometimes and your teeth point inwards,” I proffered, in an attempt to show that my observation skills weren’t completely up the spout and I hadn’t been ignoring my friends for the last 5 years!

She laughed! And told me that this was further proof of her observation that even before I had the slightest clue that I was autistic my eye contact skills were, at best, somewhat idiosyncratic!


I was in the kitchen with my best friend. He asked me if I knew what colour the eyes of a mutual friend of ours were.

I thought about it. Our mutual friend has grey hair. I think it might have been dark when he was younger. Somehow I couldn’t quite imagine what colour eyes he might have though.

I admitted I didn’t know, and that if someone really needed that information from me then the only way I could supply it would be by looking at a photograph.


I mentioned eye contact in an earlier blog post. A discussion ensued on my Facebook wall. Somebody I went to school with between the ages of 13 and 18 commented on the discussion. She clearly stated that she remembered that whenever she looked at me I would look away very very fast. She said she thought at the time it was something that “clever people did.”


My husband says that when I do look in his direction I then don’t look away when most people would. He says it’s as if I point my eyes in that direction and then just forget and leave them there. It always slightly freaks him out!


So, it seems that I have been “faking it” as far as eye contact is concerned, probably all my life. I’ve certainly never been able to glean information about the state of a person from their eyes, beyond such things as closed = maybe asleep, or tears = maybe sad or happy. I’ve also observed that even when watching television I don’t look at eyes. I go through my life and think of people I know or have known quite well – relatives, friends, former colleagues. I cannot picture what any of their eyes look like. I know they must have eyes, but I cannot visualise any of them. But I can easily visualise mouths and noses, and, in some cases, ears.

This faking really has been fake. Even when I’ve apparently been looking at eyes, I haven’t taken in any information about them. I cannot picture what my own mother’s eyes look like. Not a hope.

This is still news to me. I wasn’t aware of anything beyond remembering instructions given to me as a child, probably by schoolteachers (I can’t remember) saying “Look at me when I’m talking to you!” So I did as I was told. For the next 40 years.

So why have I been faking it? Why is looking at eyes so weird?

I believe that the schoolteachers probably wanted me to look at them because they thought that it was an indicator that I was paying attention (which it wasn’t – I was, and still am, perfectly capable of paying attention to what someone is saying without looking at them – probably rather better that way in fact). I have also looked at fellow musicians when playing chamber music and so on, and again I think it’s just a sign to people saying “I know you’re there, I’m listening to your part, and I’m paying attention.” It doesn’t actually help me to pay attention, but I know that people think you’re paying more attention if you look at them. It’s a learnt fact and a practised technique. It’s been a large part of the mask. But as far as communication is concerned it’s meaningless to me except to show that I’m paying attention.

And, it seems that while I’ve been faking some sort of approximate eye contact I’ve been using massive amounts of energy to do so (as described in An Experiment) and been pretty much avoiding the real thing whenever possible.

And all this while not even knowing I was autistic. I had no reason to avoid eye contact. Not anything tangible. But I did this fake thing for decades. So it was obviously something that wasn’t quite comfortable for me.

And so recently I’ve tried to describe what actual eye contact (from the few moments it has happened unavoidably and sort of by accident, when I haven’t moved my gaze fast enough) actually feels like to me.

And the best I can come up with is that it feels a bit like being naked in public in front of an audience somewhere very very important and totally overwhelmed in a way I can’t describe, and a bit like being poked with a sharp stick.

Which, when I put it like that, explains perfectly why I’ve faked it all my life and why I will now only even attempt it when absolutely necessary. Eye contact might be some wonderful communicative thing in some people’s worlds, but in my world it’s just rather creepy and uncomfortable.

I’m eccentric, but not “get naked in front of an audience until my brain explodes” and “be poked with a sharp stick” sort of eccentric!

The Day After

54-2016-12-29-17-00-12I was up for four hours
Then tiredness set in.
The familiar exhaustion.
The partial shutdown.

I was wise to allow for recovery.
Even pleasant times tire me.
A reminder not to book events
On consecutive days.

It sometimes feels unfair
That I have to plan and recover.
Restrain myself
From living a full life.

Because I am not one who prefers
To hide in the shadows.
But my neurology
Forces me to retreat.

At least I now know I can
Spend an evening with friends.
And survive, and enjoy,
Which is progress.

I just need to remember
That I need to take
More downtime
Than most people do.

Out to Dinner

53-2017-01-28-14-04-07A few weeks ago I got a message from a good friend of mine. He and another couple of friends were planning on dining in College, as they do from time to time, and he wondered whether my best friend and I would like to join them, as we do from time to time. It’s usually a very pleasant evening, and a chance to catch up with people we don’t see that often, especially as the friend who sent the message lives abroad and travels a lot.

Usually I’d message back by return and get signed in to dinner straight away, no question, the only limitation being whether I was already booked to do something else that evening. However, even though my diary is looking really really empty at the moment, I hesitated. An evening in College can be very tiring, as I described in Sudden Illness, and in my current state of burnout I really didn’t know whether I could cope with it at all.

I sought advice from my husband, who is often wise in these situations. He suggested I sign in anyway and then cancel if I really wasn’t well enough. It seemed like a good plan, so that’s what I did. I rather hopelessly didn’t manage to message my friend back, but I did at least sign in, and started to prepare for the biggest social thing I’ve done for many months. At the time I signed in I didn’t know whether such an evening would be totally beyond my capabilities, but I thought I’d give it a try.

And so the strategies went in to action, and a rather embarrassingly large amount of preparation and thought went into a simple evening out to dinner.

First, the diary. I made sure that I didn’t push myself or attempt to leave the flat for two full days before the day of the dinner. Enforced rest. Enforced quiet. Save energy. Save save save. On the day itself, I made myself rest in bed all morning. By the time the anxiety kicked in mid-afternoon I was up, but under my weighted blanket in the dimly lit sitting room, exposing myself to as little input as possible to keep my energy as high as it could be.

I also decided to wear as comfortable clothes as I possibly could within the constraints of looking “reasonably tidy”. A pair of elasticated trousers I usually wear for concerts, a soft t-shirt, a fleece jacket, and a soft scarf. Fiddle toys in the jacket pocket, chew toy round my neck under the scarf. Absolutely everything as easy as it could be and as comforting as it could be. And, of course, the tinted glasses that have now become my usual eyewear.

I expect I’ll do quite a lot more of this sort of thing in future and much of it will become automatic for me, but for the moment a lot of it is new, and a lot of these things are things I’m trying to see if they work and see if they help me conserve energy to do the things I want to do without getting as exhausted and stressed as I have done in the past. I’m experimenting to see how much rest I need beforehand, how much recovery time, what sort of balance I need to achieve between behaving as a reasonably responsible adult in public and being as comfortable as I can in different situations, and what strategies I can employ to help.

I also made the decision not to drink more than a taste of each wine with dinner and to drive home afterwards, partly because introducing a lot of alcohol into the mix might alter my sensory or social responses in either direction, and partly because I could go home to a place where I had the comfort and safety of my own rules, my own familiar arrangements, my sofa and telly and weighted blanket and so on, with no need to pack any bags or do anything beyond getting through the evening and then driving a familiar route home. I’ve mentioned before that driving is one of the things that comes naturally to me and I can do quite comfortably even when very stressed about other things.

Going home had the added advantage on this occasion of complete solitude because my husband was out speaking about mental health issues and was then planning on a working night, and was also going to be out for most of the next day, so not only would I wake up in my own bed, I wouldn’t have to engage in any conversation at all. If I felt absolutely terrible the next morning then I could just stay in bed for as long as I wanted.

It actually turned out to be a very good evening to have had as my first real social event in many months. There weren’t too many people signed in to dinner, so it didn’t feel crowded or overly pressured. My best friend organized the seating such that I was at the end of the table and he was next to me, so I wasn’t sitting next to a stranger. My other good friend sat opposite, and another of our group next to him, so I was surrounded by allies and friendly sympathetic people, two of whom already knew what had been going on in my life.

Nobody seemed unduly fazed by the fact that I was gently rocking back and forth, and I managed to eat most of all the courses of my dinner (though didn’t push it – tasted everything, but stopped eating long before I usually would). The familiarity of the setting (I’ve been eating in that hall since I was 18) helped a lot, and the dangly bits on the sleeves of my academic gown actually turned out to be an excellent stim toy!!!

Afterwards, something that would usually be a slight disappointment was something that actually did me a favour. The small number of people eating in meant that there was no formal dessert (formal dessert involves sitting at another table, generally more obligation to converse, and following customs regarding port, eating of fruit, and so on). Instead, the fruit was on plates in the Common Room sitting room, so I was able to take my boots off, sit cross-legged and comfortable on a sofa, and be much more relaxed.

And I sat and sipped a cup of coffee, and then some mint tea, and had a chocolate and a raspberry. And played with my fiddle toys a bit, and even chewed my chew toy a bit, and people looked at old photographs, and chatted, and I didn’t make myself chat except when I felt like it, and the evening actually turned out to be quite a relaxed one, surrounded by understanding friends in a non-threatening environment. If I appeared odd to anyone, then they didn’t comment or weren’t worried or both.

I was reminded of the line from Dirk Gently’s Holistic Detective Agency where Reg remarks (on revealing that he’s been living in the same set of College rooms for 200 years) that “one of the delights of the older Cambridge colleges” was that “everyone is so discreet. If we all went around mentioning what was odd about each other we’d be here till Christmas.” There are some aspects of my dark blue home that are very similar to the characteristics of his light blue alma mater that Douglas Adams incorporated into his brilliant stories (side note: count how many “previous blog posts” are shown in the list on each page of this blog – though you probably won’t need to now you’ve seen this remark in the context of this paragraph)!

And so the evening was a success. I drove my good friend and best friend back to their guest house and home respectively, then drove back home myself. When I got back I definitely felt that I’d been through some sort of “assault on the senses”. My ears were ringing as though I’d been at a loud rock gig, and I was slightly dizzy and nauseous and certainly not capable of doing anything more than collapsing onto the sofa underneath my weighted blanket. I stayed like that for about an hour, just curled up with my iPad, waiting until I felt a bit better. After about an hour I had enough energy to rock and bash myself against the back of the sofa, then after another half hour I started to feel distinctly better. I put the telly on, muted, and one small lamp. After a second hour I was well enough to get up and get a glass of wine and put some music on very very softly. Three hours after getting home, I finally had enough energy to have a short bath and get into bed.

I slept on and off for about 4 hours in total, and now, at half past one in the afternoon of the next day, I’m finally out of bed, dressed, and have managed to make myself a cup of tea and write up the evening while it’s still fresh in my mind. I actually feel much much better than I thought I would today – maybe that’s the result of the planning, and the care, and allowing myself the 3 hours to calm down properly before going to bed. I think it’s also a question of managing expectations – I KNEW when I decided to go last night that it was going to be a big deal in the state that I’m currently in (a month earlier and I would have been too unwell even to consider it). So none of it is a surprise. I know why I feel like I do during and after social occasions now, and just knowing means that there is a whole level of worry that there is something ELSE wrong with me that is now gone.

I’m also aware that things will continue to improve for a while yet as I recover from the burnout and as I adapt and get used to how things now are. Exactly how much functionality I’ll regain is still unknown, but early signs are that I won’t actually spend the whole of the rest of my life as disabled and impaired as I was a couple of months ago. Once I’ve stabilized I will be able to do a bit more, especially if I manage my life a bit more appropriately now that I know what needs managing.

This sounds completely mad, writing it up. So much planning for one evening out. Three hours to recover sufficiently to put myself to bed when I got home. Most of the rest of the next day spent in bed. It seems insane from any normal perspective. It must seem mad when viewed through the eyes of the well.

And I ask myself whether one night out to dinner is worth all that effort, and the answer is a resounding YES. Partly because it was simply a lovely evening with nice people and I felt cared for and loved and lucky to be where I was enjoying the food and the company and the surroundings. But also, crucially, because it gave another glimpse back into the “normal” world, a world not dominated by assessments and psychologists and psychiatrists and mental illness and difficulty, and a world worth fighting to get back to.

In many ways it was just a simple evening out, but it was also another of those glimmers of hope that I will eventually be able to function reasonably well in the world again and enjoy some of the things that make life rather better than just “struggling to get through each day”. I used a lot of energy last night, but early indicators are that I actually got some energy back too, which is better than I could possibly have hoped for.

Can I Sing?

35-2016-12-29-22-15-02The question above isn’t one regarding my musical ability. I wouldn’t call myself a singer in any real sense, but I can be a moderately useful choral soprano from time to time, got grade 8 in singing when I was in my late teens, and have occasionally sung solos, although that’s all very very rusty these days!

However, I have asked myself that question on a couple of occasions recently, most specifically when I’ve “lost the words” (I’ll do a whole blog post about that at some point, but regular readers will by now have picked up that I have times when I am non-verbal and unable to speak).

The first time I wondered about singing was when I had around 3 hours of lost words while my husband and I were staying in the hotel (see Balancing Act), but by the time I had thought to consider the question my husband was asleep and I decided that wasn’t the moment for the experiment. Picture the scenario – you’ve just fallen asleep after a busy day fetching food and coffee, and you’re suddenly awoken by some sort of noise, and then you have to put your glasses on to read the words your wife is typing to you on her phone to discover that your valuable snooze time has been interrupted to conduct some sort of bizarre singing experiment! I’m barmy, but not quite that barmy!

Anyway, last night I lost the words again. Not really surprising after the week of the cancelled second assessment and all its attendant strife (there was yet another round of telephone calls and crossed wires yesterday afternoon). I gradually observed the feeling, familiar since childhood, of first a sort of sick exhaustion, then being (as I’ve always assumed) simply too tired to talk. I’ve spent my life assuming that everyone gets too tired to talk, and that’s just normal.

Since my husband was out late last night working (there’s a reason I don’t wake him when he’s asleep), I was in the flat on my own, so had the opportunity to try the singing experiment. It wasn’t a sophisticated experiment – there was an old episode of Top of The Pops burbling on the telly, and I thought I’d see what happened if I tried, from my non-verbal state, to sing along.

The answer was this – if I tried to sing with the words of the song, then nothing. Couldn’t do it at all. Like there was no connection, something unplugged (I really do want to try to work out how I can describe all this properly sometime, but for now it’s the best I can do). So I tried without the proper words – just “la la la la la” type of thing. Also nothing. Not a hope.

But if I just forgot about the words and hummed the tune alone. Absolutely fine. Like normal. No problem at all. Just like normal humming. Totally wordless, but all completely intact from a pitch and music point of view.

It really is the actual WORDS that are the issue. I have some sort of circuitry issue with making words. Which is, of course, why social events and conversation are so absolutely exhausting. Even when I’m apparently speaking fluently, I’m working overtime to make that speech, and sometimes I just can’t do it at all.

It’s all very interesting!

Calming Tactics

11-2016-12-15-17-49-32My head.
In a bad place.
Jumpy. Edgy. Like an engine misfiring.
Out of sync.

I rub my face.
Move my legs.
Arch my back.
Scratch my head,
Trying not to do too much damage.

The stress triggers an asthmatic cough.
I feel sick.


I am at home. Safe.
So I can press my head into a cushion.
Bash my back against the sofa.
Dig my teeth into my thumb.
Flap my hands hard.
Tense my legs repeatedly.

And start to feel a little better.

Meltdown averted.

An Experiment

10-2016-12-08-13-32-07Back in mid-September, when the autism hypothesis was still just a hypothesis and the notion of declaring myself to be autistic was still something I considered seriously wild, I did a little experiment. Part of me is a scientist, and it seemed that doing experiments would be a good way to test the hypothesis.

I play in an orchestra from time to time that holds its rehearsals over 2 weeks, a couple of nights each week, on Wednesdays and Fridays. I was playing in this orchestra in September, leading the viola section, just at the point where the autism hypothesis was getting really serious.

So I did a bit of experimentation, controlling for all but two variables as best I could. I’d had the same amount of rest, the traffic was similar, I’d eaten similarly As much as possible was the same, except for two things I decided to change in the second week.

Week 1 – I went to orchestra. I did everything exactly as usual. I behaved as usual, acting as I have done in such rehearsals for years. I got home from the rehearsal and everything was exactly as it has been for years when I get home from rehearsals. I walked into the flat, dropped my viola in the hallway, and then collapsed onto the sofa, feeling sick and exhausted. It took an hour or so to feel well enough to sit up and have supper. Exactly as normal.

Week 2 – I went to orchestra. The same orchestra. I changed two things about my behaviour. First, I consciously didn’t attempt to make any sort of eye contact with other people except when absolutely necessary for musical reasons. Secondly, at the tea break I went and fetched a cup of tea and took it off to a quiet corner by myself, and didn’t stay in the room where most people were congregated and chatting.

Then I drove home, the same drive, at the same time. I walked into the flat, took my viola into the bedroom and put it back in the place where it lives. I then went through to the sitting room and was able to sit upright on the sofa and open the post and very soon afterwards was well enough to eat supper.

It was dramatic. A significant difference. All I’d done differently was not looked at eyes and not stayed to chat in a noisy room, full of conversations, during tea break. But how I felt when I got home was very very different.

I found it hard to believe that looking at people’s eyes and chatting during tea breaks took so much energy. It seemed like such a crazy idea. But subsequent similar experiments have all produced similar results. I really had been using so much energy to do things that I’d regarded as absolutely normal for years and years.

Furthermore, I had tacitly assumed that other people also got home from rehearsals and social events in a similar state of collapse – and I now started to wonder whether this was actually the case. It had been my normal life for so long that I didn’t even question it. For years, when I’d told people that I was tired, they had told me that they got tired too, and I believed, therefore, that what I was experiencing was absolutely normal. It now seemed that maybe it wasn’t.

It was only just over a week after this experiment that I declared the autism hypothesis to be true. I had reached the point where the accumulated evidence was so compelling that it was impossible to ignore.

I’m still somewhat startled by it all.