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.

Autism Fatigue

69-2016-12-17-15-46-58So much so much so much.
Overloaded with information.

Writing writing writing.
My head full of autistic traits.

Autism autism autism.
My timeline full of articles.

Debate debate debate.
Issues I cannot yet deal with.

Children children.
Where are the adults?
Or are we just not so cute?

Tests tests tests.
Early diagnosis.
Measured in months not decades.

Assessment assessment.
Flashing in my head.
Instilling fear.

My brain my brain my brain.
In so much turmoil.
Isolated and broken.

Wine wine wine.
There is nothing else.

My life my life my life.
Falling apart because I just can’t.

Stimming stimming stimming.
Weighted blankets and repetitive movements.

Autistic autistic autistic.
Well am I?

My whole identity
Unknown.

I want to scream
I want to know.
I am falling apart.
There is no help, just mess,
And waiting.

Everything is so new
And different.
When will I be me again?

I am trying to be a grown up
But I don’t feel like one.

(Except that I can persuade people
To sell me wine
Because I have grey hair).

Please can this be sorted soon.
Please.

***

Yesterday early evening was not a great time. I got very triggered by lots of things and my head didn’t do very well at them. Immersing oneself in autism stuff means getting exposed to some stuff that is really hard and difficult and it still feels so new that I haven’t had chance to work it all out yet. I have a lot of history to go over, and end up reading a lot of stuff that makes very bad feelings, both about my own history and about how younger autistic people are treated today. There is much still to work out and to make into words. And I got really stressed, mainly to do with having had so many decades of not knowing and now many months of still not being believed and now hour after tedious hour of waiting for next week’s appointment, desperately trying to hold life together when all I want to do is curl up in a corner and die.

After I wrote the above I wrote another similar thing, but much much darker. Whether I review it later or not, I don’t know. Maybe it’s too dark, or maybe it’ll be something to look back on and analyse in future. There are things in it that may be expanded to form future posts.

Anyway, the evening improved. My husband got home from work and let me know that he’d had a further e-mail from the assessment people saying that they’d received the most recent lot of writing I’d sent to them. They’ve now had, at a rough estimate, around 120 pages of evidence, going back to when I was a baby and covering my entire life. The e-mail suggested that they might actually be planning to read it, which the last place evidently didn’t (and they had much less because we’re now several months further down the line and when I can I keep writing, because, to be honest, in the absence of a therapist or any other way of sorting my thoughts, I don’t actually know what else to do. The e-mail was also clear and understandable, and seemed to suggest that the appointment will start on time and various other things that didn’t happen before, which would be good).

I then, rather rashly, agreed to go and play in a concert over the weekend. I was going to decline, but my husband pointed out that I was going to spend the whole weekend feeling stressed and sick and bad anyway, so I might as well feel stressed and sick and bad to a nice soundtrack. Maybe I can pretend things are old normal for a few hours if I can manage not to fall apart completely. It’ll totally exhaust me, but I’m totally exhausted anyway, so it probably doesn’t make that much difference. I got my viola out this morning to work out some fingering to suggest to a friend, then bashed through a concerto movement very badly, which felt reassuringly normal and not to do with autism.

Perhaps, by this time next week, the whole diagnostic nightmare will be over and I can start to rebuild some sort of normal but manageable life, and start to heal from this whole thing, and the little bits of hope that the burnout might be receding a bit will become bigger bits.

I do hope so. My head is worn out. This process is very wearing.

Too Loud

53-2016-12-29-22-14-42I sat in the masterclass, trying to hear what the teacher was saying to the student, straining my ears against the noise coming from my left. A woman who was sitting a couple of seats away from me was taking notes – with a pencil, and the sound of it scratching on the paper was getting so loud that I could almost hear it drowning out the voice of the teacher. I glanced round the room to see whether anyone else had noticed, but if they had they were giving no indication that they were the slightest bit worried by it.

I’ve noticed that since I’ve been in burnout my sensitivity to noise has increased dramatically and my ability to filter out extraneous sounds has declined substantially. I’ve always had issues with background noise, and usually I’m working really hard to filter out the things that I want to hear from those I don’t – this takes a huge amount of energy and I can only usually do it for a finite amount of time before some sort of meltdown occurs.

Interestingly, the noise in the eating place last summer (see The Discovery) was one of the main contributing factors to my eventually being identified as autistic. Not being able to cope with the noises of food, plates, eating, talking and so on AND then having to eat my own food was one of the big triggers that made me seriously anxious and I ended up figuring that it was so stressful being in that environment that the best thing to do would be just to give up eating while I was there because the whole food experience had become so very difficult. Of course, that wasn’t a great strategy, and explaining my difficulties and being given dispensation to eat somewhere quieter was a rather more realistic approach!

Eating noises in particular are something I find very hard to cope with and, as I’ve seen memes on the internet, I’ve gathered that there’s a name for this – misophonia – which is apparently something else not really recognised by medics. So I have a double problem – I can’t cope with quiet eating situations because the individual noises are too stressing, but I can’t really cope with noisy ones too well either. Catch 22. Maybe I should just accept that communal eating is a jolly unpleasant experience and stay away from it completely? Or maybe a more sensible solution might be to limit it and be aware that it takes extra energy!

But it’s not just eating. We don’t have a separate kitchen at home, just an area at one end of the sitting room. When my husband is cooking, particularly if he’s frying anything, the sound of the stuff in the pan can sometimes quite literally hurt my ears. I also get similar problems with cutlery clanking on plates, or pots and pans being rattled and so on. Even when there’s no cooking going on, I sit there waiting for the fridge to stop making a noise so I can get some peace. I really would be the world’s worst kitchen worker!

Usually I manage to cope with most of the noises in the everyday world. Like bright lights, they exhaust me and I need to recover from them. Like with light I’m trying to figure out a way to dull them somewhat, especially now I know that I’m not hearing the same things that other people hear (not because there’s anything wrong with my ears, but because the way my brain processes sounds is rather different). Unlike with light it’s more difficult. Wearing sunglasses is an easy adaption – I’ve worn glasses since I was a teenager and have to wear them anyway to be legal to drive the car and to be able to see. Glasses are no big deal.

Earplugs or headphones are an entirely different matter. I can tolerate having earphones in for a short while, but I’m permanently slightly uncomfortable with them in because of how they feel in my ears. Apparently there are people who can sleep with earplugs in – I don’t know how because they drive me nuts after a very short time. I have worn earplugs at airshows and so on, but the sound of my own voice is then totally unbearable and I only keep them in for the noisiest jets. I would also feel very vulnerable out alone without being able to hear what’s going on around me, because I use my hearing so much as a safety mechanism – maybe the advantage of hearing so much of the background noise upfront is that I notice things like footsteps behind me or the whistle of wind in bicycle wheels when I’m about to cross a road, or similar. I haven’t yet solved the noise problem – that’s very much a work in progress!

And, of course, sound has the additional problem over sight in that it isn’t just the filtering of noise that’s the issue, but a lot of the time coping with sound requires the auditory processing of language too. It has now become obvious that spoken language doesn’t come naturally to me and filtering out conversations from other conversations is something I’ve always found really hard work – which is why I’ve often found myself at parties following a conversation that I’m not even part of and when I’m then asked to contribute have had to ask what has just been said as if my hearing was a bit dodgy!

I’m fairly confident that when I’m recovered from the current burnout things will get a bit better. During most of my life I’ve generally preferred having music playing to having silence – music is a huge and very important part of my life. Interestingly, sometimes, background music (as long as it isn’t too loud) can be a steadying influence on me when I’m surrounded by talking and conversation. It feels to me as though it enters my head on a different channel from conversation – it goes straight in and has meaning instantly without the translation mechanism needed for words. However, when I had the 2001 burnout I couldn’t cope with music at all and craved total silence most of the time. This time around it hasn’t been quite as bad, but all my volume controls have been turned right down and I need everything very soft. On bad days I can’t watch the television with sound and simply put the subtitles on and read them instead. I have managed to play in the occasional concert and the music itself hasn’t been too bad, but the applause at the end of the show is very very painful at the moment. Again, I’m hoping this will improve.

Of course, living in a flat with 3 lots of neighbours is really not ideal in this situation. And the fact that I’m only getting out about once a week means I’m spending an awful lot of time listening to the neighbours’ doors squeaking, their showers running, the noise they make in the corridor outside, the car alarms in the car park below, the dogs barking, and worst of all, the noise of the primary school kids arriving in the morning (the primary school is very close to our block of flats). The voices of babies and small children produce the same effect that knives clanking on plates or people chewing or pencils scratching on paper do. I’m guessing it’s something to do with the frequency of the sound or the structure of the wave or some similar thing – maybe I’ll research it one day, but for now it’s just simple observation.

And, like everything else, now I know how much energy I’m using to cope with filtering noise and trying to focus in on what I actually need to hear, I’m going to have to adapt things a bit. More recovery, more time spent in silence (or the closest I can get to it, given my living circumstances), more time on my own. We’ve also discovered how to disable the entryphone to our flat (nobody ever visits unscheduled anyway) and we now have all ringers on phones permanently turned off. Social occasions will have to be prepared for, recovered from, and rationed to things I really want to do. Having to cope with the sheer amount of noise in the world is yet another thing that drains my energy and causes exhaustion, overload, and sometimes meltdown.

An Experiment

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

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

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

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

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

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

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

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

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

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

I’m still somewhat startled by it all.