Extreme FOMO

The post about saying farewell to the strong woman actually started off with the above title, but it grew into something else, so I’ll have another go at talking about extreme FOMO here.

Just in case there’s anyone reading who doesn’t already know and hasn’t already googled, FOMO stands for Fear Of Missing Out, and it’s defined on Wikipedia as “a pervasive apprehension that others might be having rewarding experiences from which one is absent” and goes on to mention the anxiety of missing out on opportunities for social interaction, fear of having made erroneous decisions, and regret.

Of course, everyone gets FOMO sometimes. I think it’s unlikely that anyone reading this hasn’t, at one time or another during their lives, either missed out on getting tickets for a concert, had to pull out of a race injured, been unable to attend a celebration owing to illness, or simply had to turn down an invitation because they had to be elsewhere at the time – such is the nature of a modern busy life. There are, basically, so many interesting things to do in this world that it would be impossible to do them all and difficult choices have to be made.

Like everybody else who has several interests, I’ve spent my life trying to juggle what I can do and how I will be able to live life as fully as possible. I’ve tried, where I can, to say yes to as many opportunities as possible, sometimes taking my viola to a maths class in order to go straight on to a rehearsal afterwards, or going to visit friends and taking running kit in order to participate in a race while I was at that location, or calling in on family with a carrier full of rats because I was attending a show somewhere nearby. I’ve also had days where I could have been occupied several times over and have simply had to decline invitations to play in concerts, run races, attend tutorials, go to dinner, be at a pet show, meet somebody, or whatever, because I’ve already been booked for something else and being in two places at the same time just isn’t possible.

Then there have been the other times – the times when the energy has run out. I’ve had these times all my life, and increasingly so as I’ve got older, where I pull out of something because I’m “ill”. And this “ill” has always been some sort of “mental illness”, or an indefinable malaise, bad enough to keep me away from whatever it was I wanted to do, but from which I seemed to recover after simply staying at home and doing nothing for a while. I know now, of course, that this “illness” was actually utter exhaustion and the feeling I often get before a shutdown, before I collapse, before my words vanish, and before my body simply makes me stop. I have no control over it, any more than I do over the violent meltdowns that occur if I keep overloading my system and continue “pushing through” and looking for more “inner strength” that just isn’t there.

In the past, I picked myself up after each episode of “illness” (shutdown, or in longer cases, burnout), and simply started building up my activities again. In the days when I worked I would return to work, gradually start taking on more challenges, and start to rebuild my career. By the time I had become so ill that working wasn’t an option I would resume studying, start to play more music, or do other things, because I’m interested in stuff, I’m interested in life, and I don’t actually dislike being out in the world doing things with people – I just find it really really difficult. But difficult is no excuse for not doing something – I’ve never shied away from the difficult!

And so we get to 2013, when I started to recover again after a particularly tough patch mentally. I started to do a few things, gradually stacking them up, with the idea that if I could build up my hobbies to an extent that I was leaving the flat every day and things were going well, then I might start to think about going back to work again. So I did more, and more, and more…

However, what you have to understand about this “more” is that it was “more” in my world. I knew plenty of people who were doing the same amount of music that I was, who also had full-time jobs, who also cooked dinner for their kids every evening, who were also studying for professional qualifications, who also went running in the mornings before work, and so on. I compared myself to them, and I knew that even with the amount I WAS doing, I was falling a long way short of a “normal life”. I wasn’t doing anything that wild by the standards of the people I was spending time with.

But I was getting tired. Really tired. Again. As soon as I got to any sort of level of activity that was approaching “interesting”, I started to suffer from this weird malaise once more. And, eventually, in August 2016, I fell to pieces.

And then I discovered I was autistic, and then I started to learn, and then it became obvious what was going on and why, every time I increased my activity levels, overtaxed my sensory system, or spent too much time with other people, I got ill.

So now I have to make a complete reevaluation of my life. I have to forget trying to “be like everybody else”, something that I’ve always found so incredibly difficult anyway. I have to try to kick the habit of turning up to a maths tutorial in running kit with my viola and a carrier full of rats, because far from being able to do a degree assignment and run a marathon and play in a concert and attend a show in the same weekend (which is probably more than most people would consider doing in any case), I am actually LESS capable than most people of doing all those things at once. Looking back, I’m not quite sure how I managed to do so much of so many of them for so long – sheer bloody-mindedness I think, and, of course, I’m now paying the price with a severe episode of burnout and rather dramatic loss of functionality. Maybe I can excuse “past me” for breaking “present me” so badly because “past me” didn’t know about autism, but there is now no excuse for “present me” to act so recklessly and break “future me” because I now have the knowledge and the responsibility to my future self to act on it!

So the life I rebuild from now will have to be different. If I thought juggling my diary was difficult before, it is now much more so, because I need to leave rest days between social events. I need to limit the number of concerts I can play in. I need to ask people for adaptions in some cases (which I absolutely hate doing, but the only alternative is to give up doing stuff completely). I have to decline invitations. I’ve already had to pull out of races, miss concerts I wanted to play in, miss meeting up with people I’d like to see, abandon my degree. I keep ignoring e-mails in my inbox that advertise things I want to go to, gigs, concerts, both listening and playing, festivals, events. I delete them and try to forget that I really want to be there but I just can’t go because I don’t have the spoons. I have to decline opportunities because they occur in the same week as something else I want to do, even though they don’t actually clash. During the next fortnight I have three things in my calendar and I know that I’ll need to sleep for a week afterwards just to get over the exhaustion.

And this makes me sad. This, for me, is one of the saddest parts of discovering I am autistic, of knowing, finally, what has made me so ill all these years, that my senses simply won’t cope with that much time out in the world, that every time I go to a party and chat to people I’m running my battery down, that if I want to go and stay away from home I’ll have to have special arrangements, separate eating if the dining hall is too noisy, not be able to contribute properly, fully, be “doing it right”.

I don’t much care if people laugh at me if I flap my hands in public. I don’t much care if folk think I’m “weird” (what the hell, I’ve been “weird” all my life and I’m used to it). I don’t mind if people have to correct me because I haven’t quite “got it” or if I don’t have very many friends (despite a glorious online presence, I see very few people in real life, because of the aforementioned energy problems). I don’t even care that much if I have the odd meltdown from time to time – they’re not much fun, but they finish eventually. I’ll find ways of compensating sufficiently for my poor executive functioning so I can survive, and I’ll eventually work through the anger and sadness at how my life was pre-diagnosis. And I certainly don’t care about nonverbal episodes or the absolute compulsion to eat nothing but white food for months on end – no big deal, speaking is hard work and white food is the best! Those things don’t worry me.


Yes, the FOMO bothers me very badly. The fact that I want to go and do stuff, but I have to limit myself if I’m to stay anything approaching “well”, and that I have to do that for the rest of my life, really does bother me. I have to turn down interesting stuff I really want to do – in order to spend the day on the sofa, bored out of my mind, scrolling through facebook and watching the telly because it’s all my stupid head is capable of doing. I have to regulate my life, I have to leave things I’m enjoying because I can feel my senses getting overloaded. I have to budget my spoons really really carefully or I’ll be able to do even LESS. That bothers me BIGTIME! I have lots I’m interested in, lots I want to do, and yes, even lots of people I want to see. I was already having to turn down opportunities when I was at my very best, and now I’m having to turn down even more.

Furthermore, I’m going to have to miss out on things such as drinks receptions, tea breaks, trips to the pub after concerts and so on. And these are the places where the networking happens. These are the places where someone comes up to me and asks if I’d like to play in a string quartet next month, and I won’t be there to be asked. I also fear that, having spent the last 3 years building up as a musician again, I’m now replying (eventually, in some cases) to say that I’m really sorry I can’t play in the next concert, and eventually people are going to stop asking me.

And the memes keep coming, telling me that autistic people shouldn’t be limited, and that great things can be achieved – but they don’t really work for me. I’ve had “no limits set” all my life and being autistic (and mentally ill, yes) has limited me anyway. When I’ve ignored the limits my own system has placed on me the effect has been catastrophic. This was not from some external agent, it was simply my own system breaking.

So now I have to learn to live a gentler life, to ask for help (which I hate), to decline invitations to things that I really want to do, and to limit myself because I know now that I can’t function like most people can, and that trying to make myself do so is really damaging to my health. Thus far, the FOMO is possibly one of the things that bothers me most about discovering I’m autistic, the knowledge that I will have to limit my life and as a consequence I will miss out on things I really wanted to do, whether they be concerts, races, studies, camping trips, rat shows, lunch with friends, dinners out, or whatever. I know I’ll be able to do SOME of these things and I will learn strategies to cope with many of them, but the need for rest in between is not something that sits easily with me. I’m not good at resting, I don’t like it, but I’m going to have to learn to do more of it.


Vague Head

Yesterday I posted the following status on my facebook:

Somewhat “vague” today. Not bad, just somewhat purposeless and lacking in any sort of knowing what to do. I’m sure there’s something must need doing, but I haven’t quite figured out what it is. And my head’s doing that “wandery” thing where it can’t quite figure anything out!

And later, replied to a comment on that post with the words:

I’m in one of those moods where I want to write stuff. But the head is blank. There’s nothing there. The little translation people in my head who sort the words have taken a day off.

As it turned out, I wasn’t wrong that the little translation people had taken a day off. By the time I got into bed my spoken words were becoming somewhat nonsensical, and by the time my husband had fallen asleep, they’d gone completely. I didn’t manage to get any sleep myself until nearly 4 am, so it was a rather tedious night. Even by this morning I still wasn’t able to ask him what time he’d be home from work because I couldn’t summon the energy to form a sentence that long and complicated.

And I’ve spent most of this morning in a state of some sort of shutdown. And that sort of “sad” feeling pervades. And everything seems to be a bit triggering and there are so many things on facebook that make me angry but I don’t quite have the capability to debate them because I’m right at the start of this process and I haven’t yet got to the stage where I can analyse and present the arguments in a way I want, so I read that according to the labels I’m supposed to be “high functioning”, because I could speak as a child, and I feel so desperate because I can’t remember how to work my socks and it’s nearly 2 pm and I’ve not yet been capable of eating or drinking anything, but that’s OK, because I’m “high functioning” so my life must be brilliant, like those autistic people in silicon valley who can do computer things without crying and so on. And everything’s all jumbled up in my head and I can’t really quite get the spoons together to make sense of it all, so I just sit at home in my horrible dark messy flat, staring at the forms for the state benefits I don’t want to claim because they scare me so much but I know I have to because I cannot hold down a job and my husband’s working flat out and we’re still not breaking even. But it’s OK, because I’m “high functioning”, and my sort of autism would be described by most people as “mild”. And there are parents on groups talking about their autistic children as some sort of tragedy and saying that because their children are “severe” they will never be able to live independently and that the adult “mild” autistics don’t understand. Even those of us who cannot live independently – independent living is a distant dream for me, a world that I might never attain! And they even have children at all, which, to someone like me who was never able to have any, seems terribly ungrateful. And I see the success stories and the smiling graduation pictures and I remember how hard I worked (not at the subject, but at being able to live) to get through my degree, and the early morning drinking to enable me to cope with the world, and the picture that everyone else saw of a smiling person in mortarboard and gown and how much damage I was doing behind the scenes by pretending to be strong that by the time I was in my late 20s I was downing bottles of whisky and packets of pills in the hope that I wouldn’t ever wake up again.

And all this goes round and round in my head like some sort of mess, from which I hope, one day, to extract some sense, some coherent argument, some way of trying to explain all this to people that they will understand, that they will think about. And how important it is not to pressurize autistic people into appearing “normal” from the outside because it is doing us so much damage on the inside. And I sort of hope that people will realise why all this stuff is so triggering and difficult for so many of us, but I realise that many of them probably won’t, and just like I’ve had to learn in other areas of my life, there are times when I really should hide the offending posts on facebook and move on, because my own quality of life is often so poor that I need not to make it poorer by staying awake all night, nonverbal, triggered by all this stuff, and wishing that I’d never been born because my life is such a bloody awful mess. And even as I type that sentence I’m worried that I’m lining up “nonverbal” next to “triggered” and so on, and I want to go back and change it (but I don’t have the spoons) because it implies that nonverbal (which really should be called nonspeech anyway because typing is verbal, just not spoken) is bad, and it isn’t, at least not from the inside – it feels calmer and less stressful than trying to maintain conversation, which is often hard deliberate work. I usually find that I start to feel worse and worse when I’m trying to hang on to speech, but feel much better once it has gone, an inner peace that isn’t available when trying to communicate by talking. Yet so much of the outside world seems to see this silence as a bad thing. And I am confused. And now, reading that paragraph back, I realise how social media, which is largely responsible for triggering many of these thoughts, is simultaneously wonderful and difficult, because without it I would spend most of my life without any human interaction at all, but with it I am exposed to things that are often difficult to cope with. And there’s another whole blog post to be written about that too.

And as I type this I wonder whether even to post it. Because I want to make proper, reasoned posts about all these things at some point, and I want to explore as many angles of the debate as possible. Despite my never having succeeded in academia, I am an academic at heart, a scientist, a person who tries to be as rational and logical as possible and to try to understand the opposing point of view in arguments, even if I subsequently dismiss that point of view.

But I am also just a person. A very broken person, with a lot of baggage still to unpack, a lot of self-esteem issues to deal with, a lot of practical problems to tackle, and a very very struggling head that doesn’t even think in words and needs to expend vast amounts of energy to translate the concepts and pictures and feelings into words in order to communicate them to other human beings. Even then, I don’t always get it right – it’s clear from replies to things that I say on facebook that others don’t always understand what I mean and maybe I’m not clear enough.

Note: I ran this post by my husband, who suggested that I add the words “I do understand that people who say ‘you aren’t broken’ are trying to be helpful but it is often the opposite of helpful so please, if you would like to know how to help, you can start by not telling me ‘you’re still you’ or ‘you’re not broken.’ Thank you.” (There’s a whole blog post to write about that at some point too – the extent to which I’m “me” or “broken” is massively complicated in my head and I need to work it out for myself, which will take some time).

I will do the proper blog posts at some point. The ones on my list, in which I discuss functioning labels, in which I discuss speech, in which I discuss how damaging internally it can be to an autistic person to try to behave socially in the same way as most other people can, and about how some of us who have been doing it unknowingly for decades have struggled to work out why life has consistently been so tough and gone so very wrong and have ended up so very broken and burnt out as a consequence of putting in so much effort for such a long time.

But I need more time for those. I need the soupy mess in my head to settle, so I can see. I need to do it when the translation mechanism is running smoothly and my head is clear and I’m not dealing with so many other things at once.

If I do decide to post this, then it will feel like one of the “braver” (to use a word that others have used to describe this blog) posts, because I am raising issues that are difficult, and I’m doing so without even having the capability to debate them, or with the backup of sufficient knowledge in my head, which feels like a rather frightening, and maybe risky, thing to do. But one of the things I was determined to do at the outset of this whole blogging enterprise was to try to be honest (or, at least as honest as I can be – there are things I have to leave unsaid sometimes to protect other people because my story is my own, to use as I please, but where it intersects with the lives of specific others I sometimes have to tread more carefully).

Maybe, however, it will be worth it if it encourages others to think about these issues. Although I know I’m already triggering myself massively just by typing this stuff up, never mind what will happen if I post it.

Perhaps the very best course of action at this point would be to go and see whether the connections in my head are working sufficiently well to make a cup of tea. And if they’re not, to get someone on social media to talk me through the process so at least I’ve had a hot drink today, even if nothing else!

Maybe a Poem…

I was never
A poet.

Aside from:

School creations

And a few rhyming ditties,
When an old blog server
And an old computer
To function.

Since last year,
Since I discovered
I was autistic
And everything

And structured
Have become
The way
That thoughts
From my mind.

They are sometimes
More accessible
Crafted prose.
When the machinery
In my head
Is operating
A slow
Translation service…


I don’t even know
If they are poems
Or not.

They are what they are.

And they say what they need
To say.

It is World Poetry Day

And for the first time
I wrote something
That might,
Or might not,
Be a poem.

Talking About It

I described, in Strategy Deployment, how I had dinner in College a few nights ago. The routines and protocols of such dinners are generally well-known to me, and one of those routines is a loose convention that you tend to chat to one of your neighbours during the first course of dinner and another during the second. It’s not a hard and fast “rule”, and who you actually end up chatting to depends a bit upon circumstances, but you can reasonably expect to talk to at least two people during the course of the meal.

On one side of me I had my best friend, who knows everything about what’s been going on in my life over the last eight months. He and I chatted, initially, across the table (we were on a corner) to his other neighbour. My main memory of that conversation was that we discussed the renovation of a pianola, owned by this other person – for me a nice, easy, safe topic of conversation, music and mechanics combined. No problem!

On my other side was another person I know reasonably well, a former tutor of mine from nearly 30 years ago, who I last saw at a dinner in 2013. As the main course arrived, he turned to me and first apologised for ignoring me during the starter (he’d been catching up with his other neighbour), as appropriate, and then he asked me, predictably, what I was doing these days.

There had already been a slight mention of the fact that we’d sat right on the end of the table, in the corner, when we first sat down. My best friend had explained that “there was a reason” we’d chosen those particular seats, and the fact that I was wearing dark glasses gave another clue that things were not “entirely regular”.

So, at the moment the question about “what I was doing these days” was asked, I had a choice. I could either (a) try my hardest to come up with some sort of conversation that made some sort of sense and would be adequate for the occasion, (b) ramble on a bit about “life being interesting” and “a few sensory issues” (to explain the dark glasses), or (c) just give the whole “I just got diagnosed autistic” speech!

A couple of months ago, when I went Out to Dinner, I was pre-diagnosis, and just being out of the flat at any social occasion at all was a huge thing for me. That evening, there were a couple of people there who knew what was going on in my life (one was my best friend, and another is friends on facebook and reads some of these blog posts), but a third friend didn’t know, and, two months ago I wasn’t ready to tell him, in person, by speaking. On that occasion I opted for option (b) and then e-mailed him after the event, sending him the link to this blog to explain more fully.

A month later, just before diagnosis, I was at an orchestra rehearsal, and wanted to explain to another non-facebook friend, what was going on. I managed, just, to get the words out, but was shaking and terrified, even though I knew that she was the sort of person who would be absolutely understanding and, like everyone I’ve so far told, she reacted by saying “Yes, of COURSE, that makes so much sense.” However, being able to articulate, in words, out in the big wide world, to other people who didn’t already know, that I was autistic, was still, at that point, seriously difficult.

Those of you who have been reading this blog since its inception must be wondering how this can possibly be. I’ve now been writing about being autistic, in as much detail as I can persuade my head to produce, for months. Yet just one month ago I could hardly form the spoken words to describe what was going on and two months ago I couldn’t do it at all. Of course, what might or might not have been evident from the early posts of this blog was the absolute fear when I posted The Discovery as to how my news might be received, especially as I was taking a huge gamble by disclosing after the disaster of my first assessment, as described in Too Articulate and Too Complicated. At that point I decided to disclose anyway since I couldn’t work out how to carry on living without doing so, and I got to the point where I’d decided that the risk of losing what remaining social life I had was probably worth taking in order to stop the feelings of no longer wanting to exist. But it wasn’t easy.

However, the blog moved on, the response has actually been amazing, and I’m now typing stuff about being autistic into one of my various devices on pretty much a daily basis.

But I still hadn’t reached the point where I could TALK about it to people who didn’t already know by reading the blog – at least not without almost falling apart on the spot and wishing the ground would swallow me up there and then and never spit me out ever again.

So, now returning to the point at which my former tutor turned to me and asked me “what I was doing these days”, what did I do?

I started with a couple of sentences reminding him that there was a “reason” I was sitting on this side of the table, I mentioned the dark glasses, and then I finally got to the point where I went for option (c) on my list above.

I’m certain I talked too much, and probably didn’t obey the proper rules of back and forth conversation. I also couldn’t quite multitask and eat my dinner at the same time. And my “I’m recently diagnosed autistic and this is how it came about and so on and so on and so on…” script is still very much in its embryonic stage (part of what I’m doing when I write these blog posts is teaching myself how to talk about it, part of what I’m doing when I read other blog posts and articles and books is giving myself the vocabulary to be able to talk about it, and starting to form my own ideas and where I fit in to the autistic world and how being autistic affects my life).

But, for the first time, I told someone who didn’t already know, and managed to do it without falling to pieces and shaking so much that I nearly dropped my drink, or starting to feel my speech fragment, and was able to have some discussion about it.

Admittedly, for me, dinner in College, at a place that has now been familiar to me for the best part of 30 years, feels like a safe environment. I’m lucky to be able to return to the social world, gently, in such a place, following familiar routines, and knowing that the people around me are likely to be sympathetic, and, on the whole, interested. So it was a good place to start.

However, I think the other thing that really helped was the confidence I have gained since I was formally diagnosed. I don’t think I could have had that conversation at this stage without that extra confidence.

But, whatever the circumstances, and whatever the reasons, it was the first time that I had been able to sensibly discuss being autistic with someone who didn’t already know. It was the beginning of being able to talk about it to other people – actual talking, not typing on a blog post, which is very different. I have known since the “autism hypothesis” formed, right back in August 2016, that if the hypothesis turned out to be true then I would need to find ways of talking about it, and I would need to construct scripts and work out how to explain to people (maybe, even in the fullness of time, be able to educate and inform and advocate, who knows). I’m not fully there yet, but I’m a huge step nearer than I was this time last week!

One Month On

I have how had my official autism diagnosis for a month. In that month, life has continued to change almost as rapidly as it did before I was diagnosed. My father’s cancer diagnosis has obviously changed my priorities with regard to how I spend my limited energy over the coming months. My financial situation has once more become difficult and precarious and is causing me considerable amounts of anxiety. And I have, with huge regret, realised that I cannot, at this time, continue with the maths degree that I so badly wanted to finish, so it is time to let go, to stop pushing, and to admit that I have simply run out of time and energy.

Obviously, life is still a long way from where I’d like it to be. My sleep patterns are still poor, which is not great, but they’re better than they were a few months ago. I’m now managing to leave the flat around twice a week, which is a slight improvement. When I do go out I am slightly better able to cope because I am more aware of which strategies work for me and I’m learning to give myself more recovery time afterwards.

I have now started, very slowly, to eat just a little better than I have been doing, which is no bad thing, since I saw a full-length photo of myself recently and was slightly shocked at how thin I looked. I finally weighed myself a couple of days ago and discovered that I’ve lost a stone since last summer, simply because I have felt too sick and anxious to cope with food. This is not good – I was not trying to lose weight, particularly not in that way, and I am just lucky that I was in good enough physical condition to start with that my body could cope. I am also still drinking too much alcohol in order to cope, but am starting to try to cut down just a bit in order not to do too much more damage to my physical health.

However, despite all the difficulties mentioned above, the persistent insomnia, the struggles to go out, and the continuing dysfunctional relationship with both food and alcohol, there are signs that things are improving. My husband and several friends have remarked that they perceive my underlying mental state to be improved and, even though I’m still getting some extremely sad, angry, and regretful moments, I’m starting to accept things as they are in a way that I didn’t before my formal diagnosis.

There were several people who said, before my diagnosis, that since I knew I was autistic, they knew I was autistic, and my friends and family accepted that I was autistic, there really wasn’t any necessity for me to pursue a formal diagnosis in order to understand myself. What none of these people understood, however, was my need for validation, reassurance that I hadn’t simply imagined the whole thing, and the huge huge confidence that the formal diagnosis has given me. This might not be necessary for everyone, but for me it was essential. And it really has made a massive difference to my life.

The formal diagnosis also, for me, marked the end of the old life, and the beginning of the new one. The process of discovery in the preceding months was like a sort of introduction, perhaps an overture before the curtain was raised at the beginning of the first act, or maybe the preface before the start of chapter one. My old life has been demolished, and now the process of rebuilding can begin.

There is obviously a lot of relief that the process of seeking a diagnosis is now over, and I feel, even more than previously, that my life now makes sense in a way that it never previously did. As I predicted in the last few paragraphs of Why Bother, the diagnosis has finally given me full permission to stop regarding myself as a naughty, lazy, failure of a human being. I also feel liberated from the pressure to “succeed” that has pervaded my whole life so far. There is still a long way to go and I still, frequently, feel that I am not entitled to breathe the air and that the world would be a better place without me, but I am still only a month into the new life, and there’s nearly half a century of the old one to analyse, reevaluate, and reframe.

Furthermore, I have to go through the process of mourning the life I might have had if only it had been recognised that I was autistic before I got to my mid 40s. There are still difficult topics to tackle – the mental health professionals who failed for two decades to recognise it, my childhood, the incessant, triggering, references to small children when I try to research autistic traits, and where I fit, if at all, into the autistic community (I am used to being alone and to shying away from being part of any sort of group, and discovering that there are others who experience so many of the same things as I do is, for me, somewhat disconcerting).

But one month after diagnosis there is a calm, even more so than that I felt after discovery. I strongly believe that there is a very good chance that my mental health will, eventually, be better than it has been for decades, possibly even than ever before. I am already, after just four weeks, much more confident about describing myself as autistic, and feeling that I have a right to do so. I’m also treating myself much more gently than I did previously – because now I have official permission!

I’m certain there will be yet more phases to go through, and not all will be easy, but maybe, just maybe, I will eventually rebuild a life that works. And it will be a better life than the one that officially ended four weeks ago.

Very Very Tired


You ran a marathon yesterday
Or had a big meeting at work
Or took a difficult exam
Or moved house
Or finished a huge assignment
Or travelled a long long way
Or dealt with a family emergency
Or been to a large all night party

Or something else similar…

These are big things.

You might expect
To be

And today you would need to rest.

In my autistic world
I know that if…

I went out of my flat yesterday
Or spoke to several people
Or had to sit still for a while
Or encountered harsh lighting
Or chatted for a few hours
Or had to wear particular clothes
Or sent a few e-mails
Or gone for lunch with friends

Or something else similar…

These would be big things.

I would expect
To be

And today I would need to rest.

For years
People have asked me
“Why are you so tired?”
“What have you been doing?”

Until I knew I was autistic
I could only say
“I don’t know.”
“I don’t understand.”

I was just as baffled
As everyone else!

I know now
For me
As an autistic person

The cause of this

Is simply

Existing in a world
Where people communicate
By talking.
Instinctive to many
But an effort for me.

Existing in a world
Where the input to my brain
From my senses
Is massive
And overloads my system
Until I can no longer cope.

Existing in a world
Where people sit on chairs
And care about appearances
And follow secret rules
That nobody told me.

It takes a lot of effort!

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!