Very Very Tired

Imagine…

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
Very
Very
Tired.

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
Very
Very
Tired.

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
That
For me
As an autistic person

The cause of this
Utter
Debilitating
Exhaustion

Is simply
Existing.

Existing in a world
Where people communicate
Constantly
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!

Recovery Time

I’m aware that I continue to be a bit absent from this blog at the moment. I’m finding getting the energy together to post is currently a bit more challenging than it has been, and the words aren’t flowing very easily.

I’d say there were probably several reasons for this.

1. I’m trying to get out into the world a couple of times a week at the moment – every time I leave the flat it uses huge amounts of energy and I need a lot of time to recover. But sitting in the dark by myself in a very small, cramped, untidy flat for around 14 hours a day on average isn’t very exciting, so I’m doing what I can to make life a little more interesting.

2. I’m using additional energy to communicate with my family following my father’s cancer diagnosis. I’ve fixed up to meet with him in a couple of weeks and that has become a priority for me.

3. I’ve finally admitted that studying maths is not going to happen for the foreseeable future, so I’ve been spending a little energy adjusting to that too. It was evident that it had become too much for me, but it was, to an extent, keeping my adrenaline levels up.

4. After months of really terrible eating patterns I’m making more effort to eat a bit better. I’m lucky enough to have a body that is remarkably tolerant of the problems my mind causes it, but I’m also aware that looking after it a bit is important.

5. I’m trying to sort out administration and paperwork and financial type stuff at the moment. Just because I’m falling apart and autistic and so on doesn’t mean that the electricity bills and so on stop. My husband is doing an amazing job caring for me, but he is only one person and I’m trying to contribute a bit to the running of our lives when I can.

6. My autism diagnosis is starting to sink in. I still need to go through my draft report thoroughly and get my follow up appointment arranged and think about the sort of support I need and so on. But, like giving up on the maths, the immediate and urgent need to produce evidence and the stress and adrenaline of pursuing the diagnostic process is over.

So, partly I’m trying to direct some of my attention elsewhere, but partly I’ve really seriously crashed energy wise. I tried to get up at 9 this morning, got as far as having a drink, then fell asleep on the sofa until midday. The months last autumn where I didn’t sleep at all are catching up with me now, the stress of the diagnostic process has left me exhausted, and I’m still considerably burnt out and trying to recover from what has evidently been an episode of severe autistic burnout. I currently need a lot of sleep, and even more rest, and as I’m using energy and executive functioning skills to try to eat regularly I have fewer resources available for turning on the computer and making blog posts.

I’m certain this is just another phase in the process, and the exhaustion is just something I have to deal with for now. My energy levels are very variable, and at the moment there’s nothing much I can do other than go with how things are and take the time I need to do the things that are most necessary.

I suspect this is all part of it. Discovering, in my mid-40s, that I am autistic is proving to be exciting, a relief, stressful, anxiety making, completely mind blowing, and, at the moment, utterly exhausting.

I’ll leave you with a few words (below, in bold) that I typed into the iPad the other day, but which I was too tired to turn into a blog post. Just the process of turning my thoughts into words is often hard enough, but then getting the right bits of computer and so on coordinated sometimes makes things impossible. Someone once suggested I should get an app for the blog – the thought of something so difficult (that sort of thing really is difficult for me) reduced me to tears – I’m sure my way of doing things is not the best, but the energy for learning something new simply isn’t there right now – new apps and things will have to wait until I’m better. My husband will testify that new computers and phones and so on have all led to meltdowns and tears and I resist technological change really strongly – even when it’s for the better – because it causes me such huge anxiety. I usually only change anything when I’m absolutely forced to!

I should add, however, that, just over three weeks after my diagnosis, I am continuing to feel a certain sort of “better”. I can already feel that although life will always be a struggle, there is an underlying mental wellness that I haven’t known for decades, if at all. And I now feel more confident in telling people that I am autistic and feel that I believe it myself much more. The process was difficult and exhausting, but, ultimately, for me, is already proving to be worth it. Accepting that I have a lifelong condition that will always limit me is not the easiest thing that I’ve ever had to do, but refusing to accept and embrace it won’t make it go away, it’ll just make my everyday life more difficult than it already is. It will take a while to work out exactly how best to live my life and to work out how to adapt it to make it as good as it can be, but having the formal diagnosis is already making that easier for me.

Yesterday,
I was out in town.
Conversation and coffee,
Socialising and shopping.

Not very much of the above,
Admittedly,
And nothing bad or especially
Difficult.

But enough
That

Today
I am quiet at home.
Tiredness and television,
Resting and recuperating.

Need so much of the above,
Always,
Even when I have had a
Good time.

Not energy
Even
To post this
On the blog.

Looking at Eyes

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

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

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

“Er, no, they’re blue actually.”

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

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

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

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

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

***

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

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

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

***

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

***

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

***

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

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

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

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

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

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

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

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

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

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

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

Letting Go

Apologies for yet another of these “journal type” posts. I had hoped that this blog would be just a little bit more balanced than it has been recently, and I’d still like to explore particular aspects of autism and create something a bit more useful, but, as I said right at the start, it is also, for me, part of the process of dealing with life and of trying to work out where to go from here!

I have spent the last few days feeling utterly shattered. This is partly because I managed to leave the flat a bit more than usual at the end of last week, and partly because I am starting to absorb everything that has happened over the last few weeks and preceding few months. Furthermore, it has become obvious that trying to struggle through learning advanced mathematics and completing assignments and sitting an exam in a few months time is totally and utterly beyond me right now. No matter how much I “put my mind to it”, it just isn’t happening. There are some times in life where no amount of effort will make something possible, and this is one of them. I had the same experience when I abandoned my DPhil 20 years ago – I wanted it so much, I wanted desperately to complete it, but sometimes, no matter how hard you search, there isn’t any more energy there. At that point there is nothing to do but accept that you need to stop, to give up, and to recover as best you can and make a new plan.

The process of acceptance is something I’m finding a bit odd, and also rather confusing. On the one hand I feel a huge relief that I can stop, breathe, and take some of the pressure off myself, but on the other, I feel somewhat bereft and directionless and a bit lost and I’m wondering what I’m supposed to do now.

The basic answer to that last question is, of course, obvious. I have plenty of things that still need doing – there is laundry and admin and trying to remember to eat and take care of myself. I also have lots of books and DVDs and so on that should keep me amused for a while. To many people this might sound like a great holiday, some sort of lovely blissful time – I now have permission to lie around in bed at home, watching the telly, reading anything I want, eating as much chocolate as I like, while just making the occasional list and chucking a load of laundry into the machine from time to time.

Except that this isn’t a holiday. It isn’t a break from the tough stuff – it IS the tough stuff. It has now taken me over a week to get enough brain cells together to even think about making a list. I am struggling to eat anything at all during the day as it just makes me feel sick and I’m having to force myself to nibble small quantities of high calorie food just to maintain my weight. I can’t concentrate to read most days, and I often find the light and sound from the TV terribly overstimulating. Strangely, the laundry is probably the best bit of the whole lot, though the noise from the washing machine sometimes makes me want to beat my head against the wall!

The above paragraph makes it obvious that I’m still very much recovering from burnout, and explains why I’m so unable to do more than leave the flat from time to time and the very occasional thing. And, on one level, it does give me a set of goals to aim for – eating proper meals, reading a few pages of a book, sorting out the random papers on my desk. On a small scale I have goals.

But the larger scale is more problematic. And this is where the dichotomy between feeling relieved and feeling lost is pertinent.

Getting my autism diagnosis is a huge relief. Learning that the struggles I’ve experienced all my life are the result of my brain working differently from the majority of brains is hugely enlightening, liberating, and exonerating. I know now that I was never able to fit into the world in the way that most people can because I was different from the start and I always will be. I’ve always known I wasn’t like most other people, but never really thought much of it because it was the way the world was for me, but I continually failed at things in a way that shouldn’t have been the case given how much I was working for them. Acknowledging that difference is really really helpful – in the same way that when we were discovering we were unable to have children one of the most helpful things I read was a paragraph in a book that explained that one of the difficulties of being childless is that it immediately marks you out as “different” in society because so many people do have families (and spend a great deal of time talking about them) that you will inevitably be an outsider on many occasions. That paragraph made me realise something I hadn’t hitherto realised – I was already different (I knew that much before autism was even considered) and my failure to produce a family made me even more different, even more of an outsider in society.

Acknowledging that feeling of “otherness” was really important to me then, as it is now. I have changed from being “wrong normal” to “right different”, which is good, because it means I can finally relax (as much as that’ll ever be possible for me), be myself, and set myself more realistic targets that allow me enough time for rest and recuperation in between and take into account how much just being out in the world exhausts me and drains my energy.

Finally, breathe. Stop. The battle is over. I can pause. Phew.

But what now?

And here is where the lost feeling comes in. Because the problem with not discovering you’re autistic until you’re 45, and with having achieved good exam results at school, and with having spent your entire life striving for “success” of some description is that without that ambition and those goals and those life plans, you feel somewhat cast adrift – I’m free, yes, from the expectations that I will now ever “get better” and be a high-flying something or other, but I’m also, now, somewhat directionless – floating around in an ocean and I don’t know which way to swim. The training I received in my youth was all based on me getting a good career, living a “normal” successful life. All my assumptions about my life included a full-time job, a family, and a house – that was the life I was prepared for. I never learnt about the benefits system, or what to do if you can’t work, or how to relax, or how to ask for help and support – none of those things was on my radar. I’m having to learn them pretty much from the beginning, in my 40s. This is a big ask – a complete rethink on my life philosophy. I’m also going to have to work out what I can actually do with my life that will take me beyond simply staring at the TV all day every day, because, even with my changed reality, I hope to be able to do a little more than that at some point.

So I look around and try to ascertain what others do with their lives. How do people who have neither a job nor family fill their days? What is life then for?

It seems like a wonderful opportunity – I’m sure there are people tied to jobs and families who would love to spend time travelling or pursuing hobbies or whatever, but I’m not only decidedly short on finances for travelling and so on, but just being out in the world with people exhausts me so much that any hobby would need to be mainly solitary and done at home. I’m not really looking for answers here, just pondering, and I know in my brain that I need to wait until I’ve recovered further from burnout before I can start to see what level of functionality I actually have and what I’ll ultimately be able to do.

So, I am liberated, free from the need to “perform” any more, free from the need to act the confident high-powered strong woman who I pretended to be for so long. But I am also cast adrift, directionless, like a balloon released and left to its fate, and I believe that I just have to go with both of these things for the time being. The old “rules” are gone. My life has been redefined. And there is no point fighting it, no point trying to cling on to “the way things were before”, because no matter how much I wanted that life to work, it didn’t, and the only way to move forward is to let go, relinquish control, and trust that some way forward will eventually emerge.

Absent

Aware
That I am a bit absent
At the moment.

Trying
To deal with so many things
At once.

Feeling
Quite unwell and stressed
And anxious.

Absorbing
So much big news about
So many things.

Using
So much energy constantly
Just to cope.

Needing
To remove as much pressure
As possible.

Struggling
To deal with the newness
Of so much.

Stimming
Though not as much as
I need to.

Dealing
With yet more forms
And reports.

Worrying
About some of the outcomes
Of these forms.

Attempting
To get out of the flat
Sometimes.

Resting
As much as I can because
I need to.

Finding
Life is rather exhausting
And challenging.

Wanting
To do so much more
But waiting.

Retreating
Back into the familiar
When possible.

Observing
That I’m out of my depth
Frequently.

Noticing
That my thoughts are often
Scrambled.

Intending
Still to write informative posts
About autism.

Taking
A little more time and space
Than previously.

Replenishing
Energy and thoughts and words
For a while.

Changed Life

My life is an interesting mix at the moment. I say “interesting” because one of my ways of coping with things is to be “interested” by them and to learn. Feeling emotions is, on the whole, difficult and complicated, and I’ve never received any training in how to feel things, so it confuses me somewhat. However, the education system I went through did provide me with ample training on how to learn and analyse things, so I tend to retreat into learning and analysis whenever possible. My head is wired in such a way that I have wondered all my life why school spent so much time teaching me the easy stuff (for example, mathematics), but so little teaching the difficult stuff (for example, what to do in a tea break at work). I realise now that that might be because many people don’t naturally go off and learn mathematics for fun just because it’s interesting, and most people seem to have some innate knowledge of how to cope with tea breaks and haven’t had to spend years observing other people to learn what to do and how to handle such problematic situations.

Anyway, there are two conflicting strands intertwining in my head at the moment. The shock of my father’s diagnosis (see Reactions to Diagnoses) is still very present (although now, over a week in, I am starting, slowly, to process it), and I’m beginning to work out how to adjust my life in order to spend some time with him during the next few months. I’m trying to focus on sorting out the practicalities of visits and arrangements at the moment, and my priority is to use whatever energy I can to do what I need to do in a timely manner.

But I’m also acutely aware that I currently have very limited energy. Interestingly, other things in my life have suddenly become less important. I have, for the time being, abandoned any thoughts of participating in running races. I am still very burnt out, and while I recognise how wonderful running is for me and for my health in general, what I need right now is to learn how to stop pushing myself and to rest. Coping with the overstimulation out in the world is something I’m finding difficult at the moment, and pushing myself into massive physical exertion only overtaxes my system further. I’m also having huge sensory issues with running kit, which is a different sort of fabric from my usual soft cotton t-shirts, and I cannot reliably wear such clothes at the moment without sometimes encountering waves of nausea. Furthermore, getting dressed at all is often still really challenging for me, so getting changed and changed again uses up so much energy that it’s really not a valuable use of resources. And that’s before I start on the hours of build up needed even to leave the flat at the moment! I fully intend to return to running seriously again, especially the long distances that are so fabulous, but I can easily put it on hold for now, while I recover. I need to get my energy back, work out how to deal with the crowds at races so I don’t end up crashing out of them like I did last year, and maybe I’ll ease myself back in via halves and marathons first, then return to ultras in 2018.

I’m trying to keep a bit of music going, but, for now, only familiar and relatively low pressure stuff. This time last year I was preparing to play solo Hindemith as part of a gig, and to perform a concerto in the summer, but this year I am sticking to a bit of gentle orchestral stuff and maybe a bit of fun chamber music should the opportunity arise. Nothing that requires hours of intensive practice or any great pressure – even the pressure of finding concert clothes and getting out of the flat to the gig and being surrounded by people and the sensory demands of the outside world is quite enough to cope with.

The other really difficult decision I need to make might well be forced upon me anyway soon. For years now I’ve been studying maths with the Open University. It’s been brilliant, but it’s also been a really rocky ride because my health has failed so many times over the years. Things have also changed massively with the way that the courses and degrees are organised and funded over the years, and for the last couple of years I’ve been desperately trying to finish my degree before it vanishes completely. The University have been very good, and the tutors I’ve had have been nothing short of excellent in their support, but I fear that I have now reached the end of the line. I cannot see how I can continue to work at the level I need to for the time being. Unlike running and music, however, which can be picked up when I’m better, I fear this really is the end for the maths. Had this happened 10 years ago I would simply have taken a year or so out then carried on, but that is now impossible (very long boring story to do with government funding, modules, student loans, deferrals, degree programmes and so on).

My husband is going to try to contact the OU and see whether there is anything to be salvaged (if there is, then we’ll do it), but that, in itself, is a problem because they will only speak to me and I’m not up to having the discussion right now. The problem with needing help is that in order to get help you have to be well enough to ask for help and if you’re not well enough to ask then you just slip off the radar and vanish – the same happened to me with disability benefits – I just gave up. I can’t contemplate any of it at the moment – all my energy is needed just for survival. Furthermore, any hopes that I would eventually “get better properly” and be able to use a decent maths degree (during the times I *can* work my marks are often high and might, with good health, have led to an excellent degree) to establish a good career, are now gone. The problems I have with energy levels and executive functioning and coping out in the world when surrounded by other people are the result of me being autistic and that is permanent. Just finding enough strategies to COPE at all with life is going to be a big deal – I now know that the possibility of a “successful career” is gone and that if I ever manage to work again it will have to be a very different sort of work from that I had in mind when I hoped to “recover” from whatever it was that meant I kept breaking.

So, life feels like it is changing rapidly. Priorities are altering, and the upheaval continues. My life, which, a year ago, I had been hoping to build up, has shrunk back down to something much more modest. Doing 100 mile races, performing concertos, and getting a good maths degree all seem to be in a different universe right now. My relationship with my family is in the process of changing significantly, my ambitions for life are undergoing a time of readjustment, and my entire identity has altered. I’ve moved from simply “not being very female” to actively describing myself as non-binary and I’ve discovered a world I couldn’t even have imagined existed a few months ago. It’s also still only seven months since the chain of events started that would lead me to discover, a few weeks later, that what I’d regarded as “normal” for the last 45 years was in fact “autistic”, and eventually to be diagnosed with Autism Spectrum Disorder just 2 weeks ago today. It is all really really life-changing.

Interestingly though, two weeks after diagnosis, my husband has remarked that for all the current problems in life, he perceives an underlying wellness in me that he hasn’t seen for a very long time. For all the upheavals, and all the strife, and the current difficulties, it would seem that the process of accepting who I really am IS eventually going to lead to a better life. It has become obvious from the “facebook memories” feature that for all my external optimism about life a year ago I was already really struggling, and the signs of impending burnout were already there – the life that I was still rebuilding was unsustainable, but I just didn’t know it.

And, now I am finally emerging from the diagnostic procedure itself, then, following shortly afterwards, the news from my father, I am starting to accept my changed life in a way that I wouldn’t have done previously. The angst I felt before diagnosis (even when everyone round me was telling me that of course I was autistic and go gently on myself and so on) is starting to recede and I feel, oddly, like a “more confident autistic”. For the first time in my life I am learning to take pressure OFF myself. For the first time ever, I’m able to tell myself that my head DOES work differently from the heads of most other people and that it’s true, what I mean by “tired” is different from what many other people mean by it (not all – obviously there are those who have other chronic conditions and illnesses and so on – I’m not referring to them, but to the population as a whole, to the people who CAN go out to work every day and so on). I am learning that being autistic means that my system gets exhausted JUST BY EXISTING, and I therefore need more rest than most people do. I am allowing myself to rest more FOR THE FIRST TIME IN MY LIFE, and I’m no longer forcing myself to constantly push through the bad feelings.

I’m finally letting go of the notion that I need to be all things to all people – I scroll past questions on facebook that I know I could answer, but sometimes I let someone else take the question because I know that typing a lengthy answer will tire me. I look at some of the posts and “advice” in the self-help and fitness related groups and books and I know now that this advice might work really well for neurotypical people, but that it doesn’t work for me because it doesn’t take into account that my neurology is different. Autistic people need a different version of the “self-help” manual – one that takes our neurology into account, one that recognises our differences and the extra work we need to put in in order to exist in the world and the fact that being with other people is utterly exhausting for many of us (maybe I’ll write one sometime)! I am starting to recognise that in order to stay well I have to question much of the “received wisdom” about life, and much of what I’ve learnt through the years. I need to adapt the advice, rethink the strategies, and alter my life accordingly.

And although I’d been learning lots and lots of this on my own, had disclosed my autistic status on this blog (see The Discovery) to anyone who cared to read it, being validated by a professional has, for me, given me the permission to change my life and to feel justified in doing so, which is why what happened two weeks ago today was so important. It turns out that even if the rest of the world was absolutely convinced that I was autistic and did everything they could to help and reassure me, the person who really needed convincing was me.

Reactions to Diagnoses

79-2017-01-05-13-36-21“Diagnosis” is a word that has featured rather heavily in my life recently, and even more so during the last couple of weeks. It’s a word that is loaded with all sorts of associations, both good and bad. A diagnosis can provide relief or despair, enlightenment or desperation. It can be something wanted and welcomed, or something that is most definitely not welcome and not wanted. But I would suggest that a diagnosis of almost any description provides information, and therefore the ability to make choices based on that information.

One of the first (and simplest) diagnoses I received was that of asthma. It was clear, once the doctor had assessed my lung function and made the diagnosis, what I needed to do. I was prescribed inhalers (and later pills), given advice about using them, and sent off to enjoy my new breathing capabilities (and new found ability to exercise). Once flu jabs were introduced I also started having one each year to reduce the likelihood of getting the sort of infection that might aggravate my already sensitive lungs. Although having asthma isn’t the greatest thing in the world, the fact that I received a diagnosis and can therefore get appropriate treatment is, in general, a really positive thing. Discovering that the reason I still had a persistent cough after many many months (I was drinking 2 bottles of cough syrup every day and not improving) was the result of my being asthmatic rather than having some more sinister problem was actually a great relief.

And so, a week and a half ago, I received my autism diagnosis. It’s not been quite as simple as getting a diagnosis of asthma, and the way I “use” (for want of a better word) the diagnosis will be very very different. It’s going to take quite a long time to work out how I live my life from now on and I’m going to have to continue to learn about autism, how it affects me and my life, and how I can best utilise my skills and compensate for my impairments to maximise my quality of life and productivity in the future. I’m already starting to adapt strategies that I’ve used for many years while coping with anxiety, depression, and bipolar disorder. I’m refining my notion of spoons (do read about Spoon Theory if you’re not sure what I’m talking about) and have already started to think in terms of “sensory spoons” and “social spoons” (thinking this way makes it easier for me to work out how much energy I have available for different sorts of activities). I’m considering how I can adapt the mood diary, which I’ve kept since my diagnosis of bipolar disorder, to include things relevant to autism – maybe how my various sensory systems are behaving, how good my executive functioning is, how exhausted I’ve been, what the state of my speech has been, how much my stimming has differed from whatever my “normal” turns out to be, and that sort of thing. I’m already certain that receiving this diagnosis is a positive thing and, although things are very difficult at the moment, I’m confident that they will eventually be easier as I adapt to my changed circumstances.

However, I was not the only member of my family who received a diagnosis last week. And I now have permission to say what it was that threw me into such a state of shock when I was told about it just six days after my autism diagnosis. I’ve been very much keeping quiet about it until I had explicit permission to mention it because we very much subscribe to Silk Ring Theory in our household, so as far as my autism diagnosis is concerned, I’m at the centre of the ring and I get to decide how to handle it and what I disclose. But somebody else’s diagnosis is entirely a different matter. However, this other diagnosis has affected me very significantly, and I hope that those who read this blog who are closer to it than I am will understand my need to mention it here.

A few weeks ago my father went for a routine health check with his doctor. Nothing very exciting – as far as anybody knew at that point he was a reasonably fit and healthy man in his 60s. Some blood was taken for a blood test, and when the results came back they were rather alarming. He saw a consultant just a few days after I received my autism diagnosis and received his own diagnosis – of advanced prostate cancer, which his consultant believes in his case will “see him off”. He then spent the next few days breaking the news as gently as he could to those of us who are close family members – my stepmother who was at the appointment with him, my mother, my brother, and me, followed by a few others. The prognosis is not fully known at this stage. There will be scans and histology and maybe biopsies (I’m not really very knowledgeable about all this stuff – though much more so than I was a few days ago). Current estimates vary between 12 months and (a “very slim chance”) 5 years (although there is always the tale of the outlier who survives much longer against the odds – it would seem that absolutely exact predictions are not possible). There will, obviously be treatment options discussed and weighed up, but the news that my father, who we’d sort of assumed would follow my grandfather into his late 90s, might well not reach 70, is a huge thing to absorb. My whole family is in shock, and my stepmother is in for a particularly hard time, for reasons it is not my place to write about here.

So, my life has been turned upside down yet again. My priorities are changing rapidly. I had hoped that after my diagnosis had sunk in, one of the effects it would have would be to go through some of the difficulties I had as a child, and also, particularly, some of the problems I’ve had with my father through my adulthood – many now obviously caused by undiagnosed autism and communication difficulties. For every event I’ve had with a boyfriend (such as that described in Mysterious Argument) there have been a dozen similar incidents with my father. I recall one from my late teens where we’d had “a fight” about something and I couldn’t explain any of it and I kept opening my mouth to speak to try to say something and couldn’t (I realise now that it was a nonverbal episode following a meltdown). There have been times throughout adulthood where communication has failed and not knowing I was autistic has meant that we have been unable to understand why things kept going so badly wrong. I was hoping to have years to go through all of this stuff and to be able to get back to the times when I was a younger child and my Dad was basically my hero, the one who was like me, and got me, and we could settle into a more comfortable relationship than has been the case through some of the more difficult years of my life.

But that now has to happen soon. I am already making plans to go to visit (he lives some distance away) and my brother is trying to work out how to organise things so that I can manage them. Considering I’m only managing to leave the flat around once or twice a week at the moment, it’s going to use a very great deal of energy. My father is, predictably, handling the whole thing by learning, and researching, and finding out all that he can. He’s taking a very practical and philosophical approach to it all. Exactly as I would have expected. One of the other reasons I’ve been silent on this blog for much of the week is that all my communication energy has been taken up communicating with my family. I spoke to my mother on the phone (she’s the only person I usually speak to at all on the phone, so that was reasonably smooth), and also to my brother (my words started to fragment somewhat, so we’ve now returned to e-mail), and my father and I have exchanged e-mails with things we hope to do together over the next few months. I hope I can find enough of the right words to say the things I want to say and to make some good memories for after he’s gone, because through all the difficulties and so on, he’s still my Dad and…

My reactions this week have been, maybe, predictable for someone six days out from an autism diagnosis. I described in Sensory Reaction how my system initially responded to the overload in my head. My husband worked only part of Monday in order to keep an eye on me, and to try to make sure I ate. Monday I basically felt completely numb. Tuesday I spent almost entirely dissociated, with no hope of any sort of functioning at all. By Wednesday my words were fragmenting and disappearing. Only yesterday afternoon did I regain any semblance of functionality, and it’s still very very brittle.

In a perfect world I would still be processing my autism diagnosis at this point, but the world is very much not a perfect one. I am, however, trying to use my father’s diagnosis as information to guide my actions (just as I take inhalers for asthma and just as I am learning to adapt my life to living a way that works for me as an autistic). I am rethinking the things I need to do in my life over the next few months and will be trying to find some sort of a balance that gives me time with my Dad, time to keep myself as well as possible, and maybe works out a way to leave some other parts of my life available to me in some form in the future. There are things I can simply drop for now and pick up later (they’re the nice easy ones), but there are some things that might not make it through because I simply can’t manage them and the option to continue in the future isn’t there. That’s just the way it has to be. Life happens and priorities change.

Diagnoses really do change lives – in all sorts of different ways.

Sensory Reaction

78-2016-12-29-22-16-01An event
Occurred.

I knew
In my brain
That I should react.

But how?

In the past
I would use
Knowledge
To do what
Was expected.

But that was the mask.

So I searched
For real emotion
And found
Blankness.

A few odd tears
Annoyingly blocked nose.

But…

My husband
Speaking normally
Sound levels rocketing.
Quieter quieter quieter,
Please.

Turned the TV down and down
Until it was silent.
Subtitles only.
The sounds of
Electronics
Screaming in my ears.

And the light
Becoming brighter and brighter
A million watts of bulb
Was how it seemed.

Light off.
Lamp off.
The pain of the light from the TV
Until that too extinguished.

I hid my face
Behind a blanket
To shield from the
Reflected light
Of my husband’s laptop.

I had a bath
In almost darkness
With a tiny camping lamp.

Then went to bed.

My head
Totally
Overloaded.

My reaction:
Extreme
Sensory
Sensitivity.