Evolving Understanding

Now that I come to see it written down, that title seems really really strange. But I can’t think of a better one, so it’ll have to do. What I’m trying to say is really something along the lines of “I want to write about how my diagnoses (particularly with regard to mental health and neurology) and my understanding of those diagnoses and ability to discuss them has evolved over time” but that’s way too long for a blog title!

In addition to being autistic, I also have bipolar disorder (bipolar II to be precise – which means that my manic episodes are actually called hypomanic episodes and are somewhat more moderate than the full mania of bipolar I, but that my depressive episodes are generally longer and more extreme than the depressive episodes usually associated with bipolar I (there are also other forms of bipolar disorder, including cyclothymia (often called rapid-cycling) and, I believe, something about mixed states or not specified – my knowledge on current bipolar disorder designations is a bit rusty as I’ve not done much work on it recently and I don’t have the time to do a research project on it today)).

I was formally diagnosed with bipolar disorder in 2010, although I had evidently been self-diagnosed for some time before that. I briefly wrote about my experiences back in July 2009, and I was clearly already comfortable with the self-attributed label at that time, so I suspect I had been self-diagnosed for some while before then – I really can’t remember. I have openly and comfortably spoken to anyone who cares to listen about bipolar disorder, depression, and anxiety for many years now, and I’m currently learning to do the same regarding autism. As it’s bipolar day today I had wondered whether simply to share my previous writing about my experiences with bipolar disorder, but when I looked up those writings my rough style and my evident lack of knowledge were just a bit too grating, so I decided to write this post instead.

And so we come to the notion of evolving understanding. It is clear from my 2009 writing that my own understanding of my mental health and neurology has evolved massively in the last 8 years. It is also clear that the understanding of autism in general has evolved massively over the last 8 years. And it is also clear that some of the issues in my life that I attributed to bipolar disorder back in 2009 were obviously related to my being autistic, as this quote, from 2009, shows:

“Every so often I get stressed, sometimes for no apparent reason. And sometimes, as happened when the treadmill broke recently (it was really just the last straw), I go over the edge. I cry uncontrollably, I am unable to focus on anything and incapable of making even simple decisions. Work becomes impossible. I feel terribly guilty. Eating normally becomes impossible. My senses go haywire. I shake uncontrollably. My legs HURT. And the world becomes a very frightening place, full of bright lights and loud noises, where even little old ladies with sticks seem to move at the speed of light. It is worse in the mornings. And, as I am now discovering, rather hard to write down in a way that makes any sense.”

Bipolar disorder, particularly bipolar II, and particularly in those who are AFAB (Assigned Female At Birth), has traditionally been a common misdiagnosis in the days when the understanding of autism was poorer than it is today. I did wonder, when I received my autism diagnosis, whether my bipolar disorder diagnosis would be removed, because so many of the ways the two conditions present and interact can be similar. However, bipolar disorder is also a common comorbid condition with autism, and the prevalence of bipolar disorder in the autistic population is far higher than in the population as a whole. During my assessment there was a long discussion about my mental health and about how bipolar disorder and autism interacted in my life, and I’ve also mentioned this interaction in the post about Different Language. The conclusion was reached that bipolar disorder is, for me, a comorbid condition alongside autism, and the two have to be considered together.

It’s also obvious now, from the quote above, just how many of the characteristics I ascribed entirely to bipolar disorder in 2009 were actually part of my being autistic (“My senses go haywire” and the subsequent descriptions of sensory problems associated with light and sound are obviously autistic characteristics, in hindsight). For the best part of a decade, bipolar disorder was blamed for pretty much everything that was “wrong” with me, and for a decade or so before that it was simply “anxiety and depression”. As life has progressed I’ve steadily acquired more diagnoses (and more “labels”), which might be seen as bad in some ways, but is actually providing me with much greater understanding of how my head works, and I hope, eventually, how to control it sufficiently to live a life of reasonable quality.

Perhaps, when I’m a bit more able to focus than I am currently, I’ll write a bit more about bipolar disorder and how it affects me and how it fits into my life. I’ve spent most of the last decade becoming reasonably competent at managing the condition, through a combination of medication, various talking therapies, mindfulness, and, possibly most important of all, keeping a daily mood diary (which I did for years until summer 2016 when the “autism hypothesis” was formed and things went completely crazy – once I am a bit more settled I shall set up a monitoring system that takes both bipolar disorder and anxiety and autism into account). Although some of these treatments were not totally suitable for me because they exacerbated issues caused by undiagnosed autism, they did, on the whole, work for management of my bipolar disorder – what I need to do now is to adapt them so that they’re working WITH my neurology to improve my mental health, not against it.

And my understanding of mental health issues and neurology continues to evolve, as, I hope do the understandings of others. Part of the reason I write this blog is to try to understand things myself (it is well-known in teaching circles that explaining things to other people is a good way to test understanding) and also to try to help others understand the complicated world inside some of our heads!

I do, however, fear that I’ll look back on that last paragraph (and possibly most of the rest of this blog) in 8 years’ time and think that my “rough style and my evident lack of knowledge were just a bit too grating”, just as with the 2009 writing, so maybe it’s time to stop here.

Euthymic bipolar day to you all!

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Making Tea

It has just taken me around 2 hours to make a cup of tea.

“That’s ridiculous,” I hear you cry, “it doesn’t take 2 hours to make a cup of tea…”

And my sensible brain, my logical brain, knows you are right. I am a physically sound adult, with a perfectly reasonable brain, who has made hundreds of cups of tea in their lifetime, and making a quick cuppa, with kettle, water, mug, teabag, and milk all within easy reach should be something I can almost do with my eyes shut by this stage in my life.

But I can’t. Because I go to the kitchen, and I complete the first stage of the tea making procedure (fill the kettle with water) and my autistic mind (the bit with the impaired executive functioning – I promise I’ll try to explain all about executive functioning as soon as I can) simply stops processing at that point. My mind believes that the tea is made, because it has no further instructions – often, I cannot sequence tasks, so I do the first bit of the task and my mind makes a little tick in a box in my head and says “done”!

Twenty minutes later I remember that I was thinking that it would be a good idea to have a cup of tea. I look down at the place on the floor next to my sofa where the tea lives, and see a piece of carpet that holds only dust, hairs, a few bits of dubious provenance (I haven’t been up to vacuuming recently), and some vague tea stains from previous cuppas. But no actual tea.

So I return to the kitchen. And I put the kettle on to boil, because I realise that I didn’t quite manage that bit last time. This time I will FINISH the process, and I will get my tea. I am determined. Tea will be mine.

And then my mind ticks the box again…

I wander off, again, my mind once more tricking my brain into believing that the tea-making procedure is complete and I will soon be enjoying a cup of warm brown liquid of the type that many people from my particular part of the world find so comforting and familiar.

And, of course, I have failed, once more, to join the individual tasks together, and been unable to complete the (supposedly) simple task.

You’re probably starting to understand at this point just WHY it takes me two hours to make a cup of tea, and why there is such huge effort involved in such an endeavour. Each stage has to be thought of, consciously, separately, and the amount of processing power that a complex task like making tea can take is enormous. For years I have blamed this on simply being a bit “absent minded” (yes, everybody forgets things, everybody has put the kettle on to boil and wandered off) or on the strains of mental illness, but in my case it is extreme, and always has been. I’ve compensated behind the scenes as much as I can, but I eventually get to the point where I simply give up eating and drinking because the mental processes required to deal with them are so far beyond me that I just can’t work them out.

Then you need to add in another factor to the equation – inertia. I have always known that I had huge inertia, and have even used that word about myself for many years (probably since I learnt it in physics lessons when I was at school). I have discovered in the last few months that there is such a thing as “autistic inertia” (the thing that means autistic people have real difficulty starting tasks, stopping tasks, and changing from one task to another – this is another area I’d like to write about properly once I have the ability to do so, but for the time being, just imagine the very worst procrastination experience you’ve ever had, something you really really really didn’t want to do and were finding almost impossible to start, then multiply that by about a million, and you’ll get the idea)!

So, once I’ve sat down on the sofa after supposedly finishing making my tea, I find it almost impossible to move to get up again. And, once I’m up for the next stage in the tea making I sort of forget how to sit down again and end up wandering round the flat (which doesn’t take long because it’s rather compact) in a sort of bemused manner trying to work out what I was supposed to be doing.

My impairments in ability to sequence and complete complex tasks (such as making a cup of tea) and inability to start/stop/switch tasks have been things I have lived with all my life, and I’ve made gargantuan efforts to compensate for them by using enormous amounts of brain energy, consciously forcing myself off the sofa, consciously making myself try to think of the next stage in the tea-making process, and so on, which has, of course, made me really really exhausted. Despite enormous willpower (I have no shortage of willpower – I’m the kind of person who can run 60km on a busted leg to complete an ultramarathon etc etc) I have never been able to learn to make a meal with any reliable success or managed to change from one task to another without a significant break in between and a lot of effort. When I have tried to do these things it has very quickly led to shutdown or meltdown.

And, as I’ve progressed through life, things have got worse, not better. I was probably at my peak ability sometime in my early 20s, when, like most people who are young and reasonably fit, I had more energy than is the case now. But still it wasn’t sufficient, and by working so very hard to try to be “like everyone else” at that stage in my life and by believing the hype about how “cooking from first principles is somehow “better”” and trying to do what was “best”, I stored up years of damage that only became apparent when my mental health fell apart in my late 20s.

Now I know better than that and am learning that I have to work with the mind I have and not fight against it, although that in itself takes rather a lot of strength, and learning to ignore the “advice” so freely given by those who don’t actually have a clue just how incapable I actually am, is going to take a bit of getting used to. My life has been about striving for achievement, and improvement, not about adapting and taking things more gently – that’s a huge shift for me.

And just at the moment I’m doing more external things than I have been over the last few months. My executive functioning issues had improved slightly, but as I’m now using energy to do a bit of music (which I want to do), deal with benefits forms (which I need to do), fix to see my father (which I both want AND need to do), and arrange my follow-up appointment with the autism team (which I also both want and need to do), I’ve noticed a decline in my ability to function within the flat, a need to stim more, and a more regular loss of words – the energy to do other things has to come from somewhere!

Of course, doing what I’m now doing in terms of activities would have been impossible a few months ago, so there is progress, but it’s very interesting to note how much my basic abilities, with such things as tea making, suffer when I’m diverting energy elsewhere and can’t use it to patch over the holes in my mind where those particular connections are missing.

But I did get a cup of tea today, eventually, so that was an achievement!

Special Days

I’ve never really been a person who makes a big deal out of “special days”. I’m the one who never sends Christmas cards, the one who sends birthday cards to everyone at the same time about once every five years, the one who never bothered with bonfire night or Halloween or sending valentines or waiting until Easter day to eat chocolate or marking nearly any other sort of “occasion”. I should imagine that greetings card retailers would very soon go out of business if everyone was like me. The only days that have been an exception have been New Year’s Day, when I’ve tried to set goals for the coming year, pancake day, when we have pancakes for supper, and our wedding anniversary, when we have potted meat for breakfast!

Since the advent of the internet, however, these “special days” seem to get rather shoved in my face. And many of them are really ones I’d rather not think about. This time of year seems to be awash with “days”, and I’m not really enjoying the whole “day” experience very much right now.

On Sunday it was Mother’s Day (or Mothering Sunday, depending on your preference). As an infertile childless person, Mother’s Day really really doesn’t work for me. It’s a reminder, every year, of something big and painful and missing in my life. I know I’m not the only one who feels this way about it, for a variety of reasons. This year I tried to spend most of the day staying off facebook, but that was also, in its own way really tough – I now have very little life that isn’t online, and cutting myself off from my only real social life can feel really lonely at the moment because I’m not well enough to do anything else that would otherwise distract me for the day. I had been coping, just about, with life until then, but that really was the last straw, and I’ve really been struggling since.

Then, of course, next weekend, we have April Fool’s Day. Another day when I’ve tried, by and large, to stay away from any sort of internet or TV until midday. I have never understood the premise of April Fool’s – it seems to me to run thus: tell a lie, then when someone believes your lie, tell them they’re stupid! And some people, for some reason, find this funny. I KNOW I don’t get this sort of humour – I never have, and my memories of the day as a child were that people constantly told these lies, then told me I was stupid, and the whole thing is an exercise in embarrassment and humiliation. I got to the stage where I simply didn’t believe ANYTHING anyone said on April the 1st in order to save everyone the trouble. I’m quite happy to declare, these days, at the outset, that I know I’m an idiot, I know I can’t tell if it’s a joke if you don’t put a winky face by it, and please don’t complicate social interaction further by deliberately saying stuff that’s false (the same applies, by the way, to the internet “jokes” where someone then “catches” you and sends you a message telling you that you “fell for it”).

And now, to add to the pain of Mother’s Day, and the humiliation of April Fool’s day, there are two “new” days to add into this time of year. It is, apparently, World Bipolar Day on April 30th and Autism Awareness/Acceptance Day on May 2nd.

So here am I, an autistic person with bipolar disorder, sitting here wondering what I should do about this. Because here am I, supposedly articulate intelligent blogger with insider knowledge of both bipolar disorder and autism, and I should really really be doing something about these “days”.

But I am stuck. I cannot “perform to order”. My husband writes a weekly “column” for an online magazine, and has to produce this thing week in week out, whatever the weather, however many meltdowns his wife had that week, and however many times he was required to go to the shop that day because the only damn thing she’d eat was milkshake and cheese and we’d run out of milkshake and didn’t have the right sort of cheese. He performs wonderfully – he is a skilled enough writer that even when his spoons are running low he can still write, just as even when mine are low I can drive a car and play an orchestral viola part without much difficulty. However, I am NOT a skilled writer. What might or might not be apparent from this blog is that, although I might post the posts on consecutive days, I often write three or more in one sitting but then don’t post them all at once. I have days when I can barely even write a facebook status – so the thought of having to produce something particular for a particular day throws me into a horrified paralysis where I can’t produce anything at all.

So I feel guilty, because I should be doing something spectacular for these days. I should be making memes and posting them on the facebook group. I should be explaining bipolar disorder and autism to everyone I meet in the street. I should be helping others with both conditions (conditions was the best word I could think of here) to understand and to feel less alone and more loved and all sorts of other lovely positive feely helpful stuff. And I really can’t do all that just at the moment, because I don’t have the spoons. In recent months I’ve spent a lot of time on groups with autistic people – I’m becoming aware of the vast variability in people’s experiences of autism, I’m learning how offensive many autistic people find the “puzzle piece” to be and how it’s tied up with all sorts of harmful and damaging therapies that attempt to make autistic people “look normal” from the outside, while breaking them inside (one of the advantages of not being diagnosed as a child is that nobody actively tried to “cure” me, although the exterior pressure to conform and to behave “normally” did damage me very badly anyway – I looked great in my early 20s, and if I’d been known to be autistic as, say, a 23-year old, then I’d have been held up as a model of “success” and my graduation photos would, doubtless, have been turned into memes and plastered all over facebook if it had existed, but the damage was being done inside to such an extent that by the time I reached my late 20s it was a totally different story – they wouldn’t have been making memes about my life at 29, which largely consisted of breakdown, burnout, spending night after night banging my head against the wall, and downing bottles of whisky and boxes of pills in an attempt not to wake up the next day or ever again).

And I should be telling this tale. And I should be learning all the politics and finding out which organizations are listening to autistic people and which are not. I feel like I should be going online and telling parents to let their autistic children flap their hands and jump up and down and communicate in ways other than by speech and eat soft food and wear comfortable clothes and so on and so on and so on. And, as an autistic person who can communicate by writing, I should be advocating for all autistics to be able to be themselves because none of us should have to mask or pretend or to be abused or to damage ourselves in order to “fit in” with a world that is difficult enough to cope with anyway.

But I’m still struggling with my own issues right now. I’ve had my diagnosis for only just over 5 weeks. I didn’t even have a clue I WAS autistic until just over 7 months ago. I’m still adjusting. I look at the people who have written much better blogs than this and had books published and all sorts and I feel like I should be doing the same (I was brought up to be a high achiever – the fault of the exam results discussed in Expectations Gone) but then I remember I’m really very very new to all this. I’m also coming to terms with my own childhood whilst being exposed to parenting issues in a way that is really tough as I’d largely withdrawn from anything to do with childhood or children prior to autism stuff entering my life. And I’m in the midst of the menopause and getting used to the idea that my father has terminal cancer and trying to navigate the stresses of applying for benefits so we don’t end up bankrupt. So my head is rather full.

I lay in bed this morning wishing I’d never met my husband – because he is the one who has kept me alive and if I’d never met him I’d be dead by now and all this malarkey would never have happened. I’d have cosily committed suicide some years ago and my affairs would all be long since dealt with. (This sentence did, of course, prompt me to think that there must be a “suicide day” too, so I googled it and discovered that it’s not until September, so I don’t have to worry about that one for the time being, which is a relief). But that’s how low my spoon drawer is right now. (I KNOW this place, I’ve been there many times, and I’m not in immediate danger so don’t worry about sending the cavalry – my executive functioning is too poor to do anything drastic right now in any case and my autistic adherence to routine is keeping me going in a bizarre sort of a way). I’m better than I was earlier today, but in order to start to feel better my speech had to vanish – I have spent most of the day today completely nonverbal from a speech point of view (I often feel very very ill and extremely bad just prior to my speech disintegrating, and when the words go it is usually a big relief). Fortunately I didn’t have to be anywhere today or make any telephone calls!

And so, for now, I come to the conclusion that the best I can do is point people to this blog, which is the place that, so far, I have best managed to explain the many many thoughts that are in my head, and where I have translated more thoughts into words than, possibly, I ever have before. Of course, I’m not very GOOD at pointing people to the blog (although I’m trying), because I’m possibly one of the worst publicists in the history of publicity, but it’s here, and it is what it is. For myself I need to practise enough self-care to get through all this. I need to try to eat and drink regularly. I need to continue to use this blog as something to help me, rather than something to stress me (I’m not, after all, being paid to write it, and nobody asked me to write it – I sometimes wonder if anybody’s even reading it, although indications are that a few people are glancing through it from time to time).

Maybe I’ll see something on facebook that will trigger a blog post relevant to one of the “days”, or maybe it won’t. Maybe I’ll be more equipped to talk about awareness or acceptance or whatever next year, and I need to cut myself a bit of slack for now – I can’t answer every question on facebook or call out every mistaken post or fight with everyone who posits some crazy idea – I just don’t have the energy. I’m very much having to choose my battles right now!

Am I Backwards?

I keep reading tales of those
Who receive their diagnoses,
And tell their friends,
Who disbelieve
Or express surprise
At the new found knowledge.

I see so many posts saying how
Autistic people should not be limited
And should aim
To achieve
And that they are capable
Of so many things.

I notice the posts from those
Who say that their being autistic
Is not the problem
But that the attitudes
Of others towards them
Cause most difficulty.

I am fascinated by this
Because…

I revealed I was autistic
And received my diagnosis.
My friends responded:
“Of course you are autistic,
Makes so much sense.
Absolutely obvious!”

I was never consciously
Limited by my unknown condition.
I aimed, and worked
And tried to achieve,
But was never capable
Of so many things.

The problems I have encountered
Through being autistic
Are not from others
But from overload
And lack of functioning
And simply not knowing.

I have this whole thing
Backwards…

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.

BUT THE FOMO DOES!

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.

Grrrrr!

Success Fail!

I read an article the other day. Nothing spectacular, not one to which I was ever intending to pay significant attention, and not one that I sought out – it just appeared in my facebook feed and I was sufficiently intrigued to click through and see what it said.

It was entitled something like “How to be Successful”, and was a list of the things you should do in the workplace in order to achieve success and be perceived as honest, open, secure, confident, and so on. I immediately disliked the article, very very much. It was a classic example of “ableism” and discrimination against the neurodiverse, and it made me cross enough to save it to refer to so that I could write a blog post about it.

I have long known that I could never work in any sort of “business” scenario. The closest I ever got was an administration job for a business project attached to an academic institution. I lasted a month. The tears and trauma of putting on the suit every morning were substantial, and I felt my confidence seeping away day by day as I was evidently unable to do the job that I had been hired to do. At the time I thought they were simply impossible people (that may have been true), but the reality of the situation was probably that I was never going to be able to cope in such an environment. If the list below is anything to go by, then it’s now glaringly obvious why I’ve been such a failure in the world of that sort of work (obviously, this is one perspective on one type of work, in one type of environment – this is a blog post, not a thesis attempting to cover all eventualities, and only provides a snapshot of one particular aspect of success in the workplace).

I learnt from the article that to achieve this “success” I should: sit up straight, use gestures correctly, open my arms, not touch my hair, smile, make appropriate eye contact, and give firm handshakes!

Wow!

And I’m expected to do all that while wearing clothes that hurt me, and knowing by magic when to offer to make tea, and being comfortable with working as a team, possibly in an office with lots of office machinery making a lot of noise and fluorescent lighting overhead, and so on…

It’s no wonder I failed.

If I consider each of these criteria for success one by one then I come to the following conclusions about my ability to meet them.

I can sit up reasonably straight for a short period of time, but I find sitting on a chair “normally” extremely uncomfortable – given the choice I always sit with my legs folded under me, and always have. I imagine this is because the pressure is reassuring and helps balance my errant sensory system. If I have to sit on an ordinary chair in the ordinary manner for any length of time I start to feel stressed and sick. My legs will jiggle (involuntarily), and I will run out of energy very very fast.

I received my draft report from my autism assessment the other day (it will be completed after the next meeting). The assessor observed that I can use gestures, but that my range of gestures and facial expressions is much narrower than would be expected and that my gestures are formulaic and learnt. This is me, with 40 years practice and learning – and I still don’t make gestures or facial expressions like most people are able to.

I should open my arms. Like sitting on a chair, I can do that for a very limited time, but it feels forced and unnatural. My natural inclination is to draw my arms in towards me, to bend my elbows upwards, and to clasp my hands together. Sitting with arms open for any length of time feels contrived and uncomfortable, and, also, dishonest, because it feels so clearly like acting. Apparently having closed arms means I disagree with what someone is saying to me – I disagree most strongly with that assumption!

Apparently touching my hair shows a lack of attention!!! Since hair twirling is one of my biggest lifelong stims, it’s actually something that helps me to pay attention. And, moreover, it’s probably one of the more socially acceptable stims – if they don’t want me to touch my hair would they rather I played with a toy or flapped my hands? Maybe I could substitute the hair twirling for rocking and biting my fingers? I suspect that wouldn’t be acceptable either, but any of the above would actually HELP me to pay attention!

Smiling at the right time in the right place is apparently also good if you want to achieve success. How on Earth you’re meant to know what is the right time and the right place to smile I don’t know, and that’s before you have to remember to do it. I refer back to the assessment report that noted my limited range of facial expressions. This smiling business is rather hard work!

And, of course, there’s the inevitable mention of eye contact. If I make eye contact for too long with people I am, apparently, insecure, but if I don’t make eye contact enough then it’s because I have something to hide. And someone like me, who struggles to make any real eye contact with anybody at all just reads this stuff with blank incomprehension. How do I figure any of this out? What do I do?

The last of these pieces of “advice” is probably the only one I could actually follow. I am perfectly capable of giving a good firm handshake. Though I fear that by the time I’d sat up straight with my arms open trying not to touch anything and to work out what gestures and smiles and eye contact to use I’d have such shaky sweaty hands that even my handshake would fail the “business success” test!

***

Yes, this was just some bonkers article off the internet. Yes, I’m being slightly facetious here (but only slightly). Yes, it’s not typical of all workplaces and I’m sure there are some fabulously inclusive disability aware places with people who don’t judge on any of the above. Yes, I’m sure that sort of workplace is not suitable for everyone, autistic or otherwise. I’m trying to avoid a barrage of “but it’s not really like that” comments because I’m aware that all I’m actually doing here is giving a personal response to an article I saw by accident on the internet.

BUT, the very fact that such an article exists indicates that there are people out there who are still equating the things above with “success”. There is no mention anywhere in the article about the person’s ability to DO THE JOB. It’s all window dressing. It’s all superficial. And on some level it must be true – that those things matter to some people, and if they are the things on which they judge potential colleagues or associates, then autistic people are really going to struggle. We’re at a massive disadvantage – and possibly most massively disadvantaged in the world of work at the “higher powered higher earning” end of the market.

I am not in a position to get any such job, and never was. My business acumen is zero, my ability to cope with working in such an environment lasts for a few hours at most these days. I have never aspired to such a career, but maybe there are autistic people out there who would like to work in such an environment and do have exceptional business skills, but who are judged by their ability to sit “correctly” or do appropriate things with their hands, and their skills will be ignored. That makes me sad.

And, if being able to do the seven things listed above is what enables one to be “successful” then I am destined for “failure” because I have a condition that means I cannot perform those tasks “properly” even with massive effort and 40 years practice. I am DOOMED!!!! (Not really, that last bit was sarcastic)!

And the real irony is that I am actually honest, open, and even, at times, can be secure and confident. But because I have a communication disability, some others might have problems perceiving that. Which is sad!

To reiterate – I was definitely cross about the article being quite so ridiculously ableist and I do think there are some massively serious points to be drawn from it when compared to the skills of an autistic person. However, I am old enough and ugly enough also to laugh at such an article, and to say “What a load of rubbish!” My reaction of “Well, I’m an automatic fail then!” wasn’t one of despair, but of sarcastic amusement and a gentle “Fuck you, because you really are clueless about what it’s like to live my life!” to the author of the article and all such articles!

I say this because my husband once wrote a post about how he tripped over a hillock while out running – he’d intended it as a funny story but got a huge number of concerned comments about how sorry people were that he was injured when he wasn’t really injured at all, just recounting an amusing event!

If anyone is still reading at this point and has understood any of this blog post then I congratulate you wholeheartedly! Reward yourself with a cup of tea! I’m off to sit on my feet with my arms crossed, and play with my hair while wearing a blank expression – and I won’t be shaking your hand because I’ll also be holding a cup of tea!

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!