The Preamble

I have become increasingly conscious over the last few weeks that there is a significant part of my “autistic journey” still absent from this blog. I’m also conscious that I have so far erred on the side of pointing out some of the inadequacies of services available, and that the only account of an autism assessment I have thus far published is a pretty scary and negative one.

It is true that I have encountered some difficult times during the diagnostic process and that there is much that could be improved. I still look back to the end of November 2016 with some horror and still hope to be able to feed back what happened at some point (one reason I try to type things up is so that they don’t vanish from my mind). And I also look back further to other “care” I have received, including the unhelpful GP who, two decades ago, told me to stop crying and sent me away with a packet of citalopram, and the counsellor I saw, a decade ago, who told me that it was my fault I didn’t fit in with the people at the office and I needed to try harder and learn to wear make-up and be able to discuss it and so on. These times were not good.

However, I can also look back into the history of my mental healthcare and pick out some people who were really good and really helpful. The locum GP who first referred me to a psychiatrist, realising how terribly ill I was, my current GP who has been totally supportive throughout, and a team of people who really did help with issues relating to my mental health and bipolar disorder in particular – an excellent CPN (community psychiatric nurse) and several charity workers who were brilliant. And I can look back into more recent history and see that the triage service (the stage between my GP appointment and my autism assessment) were also as helpful as they could be, and that I eventually ended up having a thorough, helpful, and successful autism assessment, carried out by people who really did know their stuff and really did help me to work out what was going on.

The only comparison I’ve thus far made between the two assessments I went through has been that in A Tale of Two Assessments, but now is the time to expand upon that post a little, and to try to write up, as best I can, five months on, what happened at that second assessment (or, indeed, third, if you count the assessment that was cancelled only hours before it was due to happen). Unlike the first assessment, which I didn’t write up for nearly a month because it was so triggering and upsetting, I’ve left the second assessment until now partly because external factors intervened (my father’s cancer diagnosis, various events to which I was committed, the need to sort out admin that had piled up prior to diagnosis, working on the report with my assessor) and partly because I have simply been exhausted and trying to process the whole thing. I knew, from reading what others had said on the topic, that getting a diagnosis would come with a whole load of conflicting emotions, and my assessors had also told me that alongside the relief would come a whole lot of other stuff, so I was prepared to go through another set of ups and downs like those described in Various Feelings.

What I had been less aware of is just how exhausted I would be, not only from relief because the fight to be recognized and validated was over and my life finally made sense and so on, but also from the energy used to gather the information over the preceding months. Looking back now, I can see that my life, from the end of August 2016 onwards, was almost totally taken up with researching autism. I read over 20 books, hundreds of blog posts, and spent hours and hours making lists, going through traits, going through my life, discussing with a few trusted friends, filling in quizzes and forms and questionnaires. The enormity of the discovery sent my mind into overdrive, and throughout September, October, and much of November I hardly slept or ate, was permanently on a sort of hypervigilant alert, and had a really intense time of discovery, of learning about my early childhood, of piecing things together, and of finally learning how to listen to my body and allowing myself to stim intensively, often for hours each day. Four decades of masking suddenly ended, the energy to pretend gone, completely burned out, and autistic me emerged somewhat powerfully.

Then came the first assessment and the crisis that followed it. My burnout finally reached the stage where I spent a lot of the time in shutdown, increasingly nonverbal, and retreating from the world, just trying to survive. However, the job of getting a diagnosis was still not done, so I kept pushing and pushing, started this blog, gathered more evidence, went through more stress, and my husband worked like crazy to get me the second referral to the team who eventually diagnosed me. Having been through the six months prior to February, it’s not really surprising that once the objective was achieved, I was utterly exhausted. And I still have to cope with being autistic, in my mid-40s and in perimenopause, working out where to go from here, and trying to maintain sufficient levels of self-care not to fall apart completely. I’ve also, tentatively, started to sort out the pieces of my life that were abandoned several months ago and have started to get back out into the world a bit more and begun the process of working out where I go from here, as I’m finally beginning to regain a bit of functionality again.

But now I am as ready as I’ll ever be to fill in the gap in the story of my diagnosis, the tale of the time between Weekend Journal and An Announcement, and of the five hours of my life that gave me the validation and permission to be myself and confirmed that what I’d learned over the preceding six months was true, confirmed by somebody who clearly knew what they were talking about and was willing to give me as much time as I needed to explain, to talk, to work things out, and who made the experience as smooth as it possibly could have been. I can’t yet predict how many blog posts telling this story will take, nor how long it will take me to write them all, nor what other posts I might feel moved to write in between times, before I complete the whole “diagnosis” story, but once I’ve documented the whole process I’ll try to find some way of linking everything up so anyone who’s interested can follow everything sequentially. I’m in the process of trying to organize the whole blog a bit better anyway.

It’s strange now to think, just over five months later, about those five hours on that day. It was a day that had been long awaited in several senses – the time after the first assessment had felt like an eternity, the months following the discovery had been intense and focused almost entirely on getting a diagnosis, and the four decades of a life that didn’t quite work had finally got to the stage where all those little things that weren’t quite “right” would be explained and validated by one sentence on one rather surreal day.

It was certainly one of the most significant days of my entire life!

The Incident

I can still remember the moment, even though it was some years ago now. It was the moment the woman kicked me, and then shouted at me, and I went into a total panic, terrified, unable to articulate anything, unable to cope, and my senses went haywire and I needed to scream and run away and not be where I was any more and everything felt terribly terribly wrong.

Running away at that moment, however, was really really difficult. The best I could do was to get to the side of the pool, get out as fast as I could. Shaking and trembling I managed to retrieve my stuff from the locker, put minimal clothes on over my wet costume, then slammed the locker door, screamed in anguish, and ran towards the exit of the leisure centre, and to my car, and to safety.

Except that I never reached my car. The manager of the leisure centre stopped me and wouldn’t let me leave. She made me sit down and I started to feel really sick. She started talking about police. I started to think “Oh fuck, this is seriously bad news”. I managed, just, to say the words “Mental health” to her, hoping desperately that once she realised I was in the middle of what I believed at the time was a really bad panic attack she’d let me go. She didn’t, although she did decide not to call the police on me, but instead called the local doctor’s surgery, taking my name from my leisure centre admission card.

Eventually I was deemed calm enough to be allowed to leave, and I returned home, where I then received a call from the surgery, which didn’t help matters at all because it reignited the panic. I slammed the phone down on the doctor, desperate to be left alone.

I never went back to that particular leisure centre, even though I had a membership that had some time still to run. I swam a few times again at a different pool, until it became too much and I just gave up swimming, even though it was something I loved doing, and, at the time, was the only regular exercise I took. Somehow it was just too difficult and the memories of that “panic attack” were just too painful.

I saw my own GP shortly after the incident and tried to explain to her what had happened and to get the incident erased from my medical records. It had been reported and noted that I was “violent and aggressive”, which I disagreed with. I didn’t feel violent or aggressive – I felt scared and distressed and not in control of my actions or my head, like there was some sort of explosive reaction inside me that I was powerless to stop. There was no violence. If anything I was trying to STOP anything that might have been perceived as violence, trying really hard to stop whatever it was that was making the world feel so awful at that moment.

My GP was sympathetic but said she couldn’t erase the record completely, however, she would add to my notes to put my side of the story on there and to point out that I had a history of these rather extreme “panic attacks” and that none of it was my fault. It was a damage limitation exercise at that point, but it was the best I could do.

Just over three years ago we moved to a different area, and to a place within easy walking distance of a swimming pool. I was aware that it was there. I took up running shortly after we moved and ran past it fairly regularly. Before the “incident” (as it is now known) I’d have been straight down there and joined, but I hesitated, because swimming had ceased to be my thing, even though it had very much been my thing for many years. Running was now my thing – it was safer, easier to be alone, with no time constraints, and so on. However, I did eventually take out a membership, which I only used once – after I’d run my first marathon someone said to me that swimming was a really good way of recovering, so I went down to the pool and did 42 lengths (one length for each full kilometre of the marathon distance) a couple of days after the race.

Then last September I went to see my GP again, following the suggestions from several friends that I might be autistic. My husband and I took quite a lot of notes we’d made about my childhood and my subsequent life and a list of things we’d taken as examples of autistic traits that were listed in various books we’d used for research. I think I started by saying something like “This is going to sound really random, but some folks have suggested I might be autistic…” before letting my husband take over the narrative because it all felt so weird.

My GP almost literally kicked herself and said something along the lines of “Of course, why didn’t we see this earlier?” or similar. And then, in a further “lightbulb moment” she mentioned, unprompted by us, the “swimming pool incident” and at that moment it became obvious that what had happened that day, several years earlier, was not a panic attack but an autistic meltdown (one of rather a lot of such things that have happened over the years). Bizarrely, the incident I’d tried so hard to have erased from my medical records actually confirmed the autism hypothesis, and my GP was writing the referral for a formal autism assessment pretty much before we’d even left the room.

After that one post-marathon swim, well over 2 years ago, I never went back even to the new pool. I discovered quite quickly that I could recover from marathons perfectly well without swimming, and something I’d enjoyed as a child, absolutely loved as a student, and done reasonably regularly throughout adulthood simply disappeared from my life. I had running now in any case, so it really didn’t matter whether I swam or not.

I’ve pondered for the last year or so whether I’d ever swim again. I vaguely have in mind that I’d like to do a triathlon some day, so thought that swimming might feature in my future somehow, although it was always “in the future” and since I don’t currently have a working bicycle or anywhere to keep one, triathlon is still firmly “in the future” and will probably require another house move in any case.

But last week a friend of mine went swimming. And I was suddenly rather envious. And I googled the opening hours of the pool to see when they might be. And I found my swimming bag, as it had been left, over 2 years ago, with costume, goggles, towel, and so on, all ready to go. Maybe? Just maybe? Then this morning on my facebook memories from a few years back there was a status saying that I’d been swimming for the first time in a year (evidently one of the times I was trying to get back into it, but that didn’t stick).

And the temptation was finally too much. Armed with the knowledge that it would be a total sensory overload experience and that how far I’d get with it depended not upon my physical swimming ability, but upon my system’s ability to cope with noise and light (even though my goggles are slightly tinted, they’re not as dark as I’d like) and being in close proximity to other people. KNOWING this was the case I was better prepared than I have been in the past, and the magic of the internet was also able to provide a little graph showing when the “least busy times” were, so I picked the time when it was likely to be emptiest (over lunchtime as it turned out), and it was indeed quite empty in the main pool.

And I bought a single swim, not a membership, so there’s no pressure to go again. If it turns out to be something I can manage to do regularly I’ll consider a membership at that point – rather than going in fast and crashing out, I’m trying to take it gently, one swim at a time, and not pushing how long I stay in the pool until I work out what my sensory system can cope with because I really really want to avoid a repeat of the meltdown scenario, which should be easier now that I know what it was all about and what caused the “incident” all those years ago.

Being back in the water was lovely. My arms aren’t as strong as they were, and my cardio isn’t what it was a couple of years ago (I already know that from recent running exploits), but I happily swam 40 lengths – I thought I’d go for a kilometre to be gentle, rather than the mile that used to be my regular swimming distance for many years. I was conscious that the real challenge wasn’t the swimming at all, but just being in the pool with people and noise, and I was trying to monitor how that felt. So far, so good, although I was pretty wrecked when I got home and needed total dark and silence for a while to calm down.

Who knows what happens next. One swim at a time for the moment. But I’m hopeful I’ll get back something that I used to love, now I know what caused it to go wrong several years ago.

Accumulation

There are usually two reasons why I might not update this blog for several days. One is that I’m too busy, doing too much out in the world and am therefore spending all my energy interacting with people out in the world and all my time simply doing whatever it is and therefore don’t have enough energy or time left over to write a blog post. The other is that I am simply unable to write at all because I cannot translate the thoughts in my head into sufficiently coherent words because I have run out of energy completely and it is all I can do simply to survive and get through the day.

Both of those situations have been the case this past week, which is why I’ve been absent. After a couple of really busy music events the previous week (and yes, I did leave two clear days between each for recovery), I then went out to lunch on Saturday, went running on Sunday, out to lunch again on Monday, and then had to drive over to the vet on Tuesday to collect a rat who’d had a operation.

It turned out that, when added to the musical activities of the previous week with bare minimum recovery time and no “well days” in between for me to gain energy, four consecutive days out of the house was too much for me (in fairness, I didn’t plan four days, because I’d forgotten about collecting the rat, and even when I did remember, just a drive to the surgery didn’t seem like it would be too much – but it was).

And then, on top of all this activity out in the world with noise, and interaction, and so on, there were other things going on. Several incoming messages to deal with, things I wanted to say and comment on, friends who needed support in various ways, a bit of family stuff (father starting chemo), a birthday, anticipation of the upcoming weekend (which is now happening as I type), and my spoon rations were stretched to their absolute limit. And last thing on Tuesday evening the very last spoon of my spoon overdraft was used and I went from “coping” to “not coping”.

With hindsight, the signs were there. Saturday lunch was the last “proper meal” I managed to eat, and my food intake got increasingly erratic over the next few days. I started to feel exhausted again. I gave up commenting on facebook posts I’d wanted to because I couldn’t find the words. Sunday I got wiped out by going for a run and lost speech again. And once I got to Tuesday night I managed about one hour of sleep in total.

I haven’t felt up to writing a blog post, not even a “poem style” one since then. I’ve tried on several occasions. I’ve lain in bed with the phone, sat on the sofa with the iPad, and at one point turned on the computer and managed to type a title before feeling so awful I had to go and lie down again. But that has been it. Today is the first day I’ve really felt anything other than absolutely dreadful.

And I finally figured out, yesterday, I think, WHY that is. Even if I had been wrecked on Tuesday evening I should have been OK by Friday if I’m thinking of the “two days for recovery” rule, which I’ve been applying and which has, on the whole, been reasonably successful.

But what I hadn’t figured on was the cumulative effect of stacking up many events on top of each other. I hadn’t figured that the two days are just what’s needed for recovery from doing something, but that they’re not enough for proper recuperation. If doing something takes me into spoon overdraft, then two days can usually get me back to a balance of zero, but if I don’t take MORE time alone with minimum sensory input then I never get chance to accrue any savings. I’m living on credit the whole time.

And now I’m paying the price. I was supposed to be going to the Air Tattoo yesterday with my friend. I was not well enough to go, not by a very long way. I wasn’t even well enough to e-mail him to tell him I wasn’t well enough to go, so my husband had to do it for me. It was left that there might be a possibility of going to park and view nearby tomorrow, but, as I type this, I don’t think I’m going to be well enough for that either. I’m still struggling to eat. My sleep is still really disturbed. And my mood is not, shall we say, at the top of its game.

And my husband isn’t here to do the communicating for me either because he’s out for the next two days running the 100K ultramarathon that I am missing terribly and want to be doing too, but am not well enough. I’ve been dreading this weekend for a few weeks now, knowing what sort of weekend I wanted it to be, what I wanted to be doing, and what I wouldn’t be doing, because of stupid burnout and being not well enough to have done enough training or anything.

And it’s turned out that I’m not even well enough to go and watch aeroplanes either. I’ve run through, in my head, the potential scenarios for tomorrow, and I can’t imagine how I’ll cope. There will be people, there will be noise, there will be nowhere to hide, nowhere dark to go. It will be a long day that will use spoons fast. Even in past years, before I knew I was autistic and before this particular burnout, it’s taken me several days to feel well again after going to an airshow – I now understand why. My husband has made sandwiches and has left them in case I go and need them, but my head just can’t make it work right now. I’ve been trying to get out of the flat for the last day and a half in order to do a few jobs – I need to go to the bank, my phone has run out of credit, and so on, but even that feels too much for another few days. I need more time, more space, more recovery.

All this makes me sad. Things that I want to do, things that I love doing, I just can’t. It also makes me afraid, afraid that people will stop asking, that they’ll think it might be “too much” for me and that decisions about what I do will get taken out of my hands because people will think they’re protecting me by not inviting me to play music or have lunch or go running or go to airshows or whatever. And I’ll miss out on opportunities that I COULD have taken (my functioning abilities are so variable that I can often do something one day that I have not a hope of doing the next, and vice versa) and on things I enjoy. I also worry that they’ll stop being genuine with me, thinking that I won’t be able to cope with difficult stuff, and I’ll end up with a confused “half-reality” which I absolutely don’t want, even if I can’t always help with that particular thing at that particular time.

I have to learn this stuff for myself, and I have to discover just what abilities I’ve been left with following the burnout of the last year, just how far I can push before I break, and what I can do to mitigate against the effects of going out into the world and doing things. I have to learn how the cumulative use of energy stacks up and what I can do about it. Even realising, this week, the difference that “accumulation” of spoon debt makes to me, it has become obvious why I’ve struggled so badly to hold down even part-time jobs. Even if I can get through the first week, the damage to my energy levels stacks up so I’m incapable of doing the same in the second week, and I eventually fall apart. Looking back now, it’s easy to see the patterns. And in a strange way, being able to see those patterns and understand why I lost the jobs is at least satisfying and persuades me, just a little more, to stop blaming myself (as I have done for years) for my many failures in the workplace.

Before my husband headed off to go running around the countryside we were able to discuss some of this. He reminded me that it’s still less than a year since the huge discovery that I was autistic (which is possibly the most life-changing thing that will ever happen to me), and it’s still less than 5 months since my diagnosis, and that I’ve actually come a very very long way from where I was back in December. I’ve recently done things that I could hardly have dreamed of back then, so it really is progress overall.

However, progress takes work and energy and costs spoons. Even if the general direction is upwards, sometimes things will go downwards. While I continue to be the sort of person who wants to go out into the world and do things and to push myself to my limits (or, let’s be honest, to test the outer reaches of those limits and to keep pushing until I break, which is probably going to continue to happen quite a lot because living a “quiet life” is so counter to my personality that in its own way it’s even harder than doing the pushing because pulling back also takes a lot of effort), I will, inevitably, break from time to time.

Today, however, just doing what I really need to do will test my limits. I need to pay the council tax, I need to contact my friend about watching aeroplanes, and I need to eat. All of those feel like really really big tasks right now, but they’re what I’m aiming for. Anything else will be a bonus.

What A Year!

It’s my birthday tomorrow!

Don’t panic – this isn’t some sort of crisis of ageing, or plea for cake (though I’m not averse to cake), or any other similar thing. I have no issues with birthdays – been having them all my life and am generally pretty chilled about them.

I do always have a little moment of thinking about the actual number though, and usually, when I move from an odd to an even number it’s really satisfying – especially if it’s a really good even number with loads of factors, or some nice symmetry or something. 46 could be worse – a year of life for every chromosome is quite satisfying, and the fact that its prime factorisation is 2×23 echoes the chromosomal connection, since chromosomes come in pairs, enhances that satisfaction (even though 23 is a much larger prime factor than I’d ideally end up with for maximum numerical pleasure). That it’s made up of two adjacent even numbers pleases me, as does the fact that the digits add up to 10. I’m sure I’ll be thinking of many more advantages and disadvantages of 46 as a number over the coming year!

So today is the last day that my age will be 45. Unusually for an odd number, I find it really pleasurable. Prime factorisation of 3x3x5 is good, the fact that it is the sum of the digits is even better, and, of course, it is a multiple of 5. Multiples of 5 are the most preferable of all the odd numbers to me, so being a “5” is always good. Furthermore, the digits add up to 9, which is a square number (nice) and it is, itself, a triangular number! All this is good!

However, aside from an excuse to enjoy a bit of prime factorisation and so on, and maybe eat some cake or have slightly nicer wine for the evening, birthdays do make me pause, just briefly, to remember birthdays gone by and to reflect on the past year.

And this year I’m looking back at the last 12 months and basically thinking “Crikey! Did all that really happen?” in a really really big way.

Really really big!

Because 45 is always going to be the age I was when I discovered I was autistic and when I received my diagnosis.

I’m still struggling to explain just why such a discovery and diagnosis is such a big thing (though talking to others who have been through the same has revealed that I’m not the only one who regards this as such a big thing, as life-changing, and probably even life-saving (or, perhaps, life-prolonging, because I have to die sometime, just a case of whether that sometime is sooner or later)). I am, of course, still trying to get my head round the whole thing in any case – the discovery was only 11 months ago and the diagnosis less than 5 months ago, and on my last birthday I was still totally clueless about my neurology and about many of the things that have occupied my mind for most of the last year.

I wasn’t someone who’d “suspected for a while” (though I always knew I was a tad on the eccentric side and generally did things my own way, and I’d been aware all my life that the world was generally confusing and often difficult, and so on – but I assumed that was just the way life was for most folk and they just had more energy than I did), so I really have gone from “completely oblivious” to “diagnosed autistic” in a rather short space of time.

And I find myself in the slightly odd position of being rather knowledgeable about being autistic, simply because that has been my lived experience of the world all my life, which is rather strange. And, of course, because when I then get interested in something (such as autism) I get VERY interested, I’ve learnt a whole load of stuff that I’d never even have imagined existed this time last year! And most of it basically describes me, and my life – and I turn out to be rather less unique and different than I’ve always assumed! This is also odd – I was a quirky, crazy, eccentric, and rather batty neurotypical person who had basically failed at loads of stuff and was seriously mentally ill (all of this so I thought, though I’d never have used the term neurotypical because it wasn’t part of my vocabulary), and then suddenly I wasn’t – I was a really rather ordinary and quite stereotypical autistic person who’d been trying to be something I wasn’t for decades and had broken myself in the process (quite a revelation)!

And I’ve spent much of the last year thinking about all this, and learning, and realising that I AM, in fact, very stereotypically autistic. And as soon as I put autism into the equation, my life makes sense in a way that it never has done previously. And as soon as I realised what had been happening all these years and ran out of energy to mask, it all seemed so very very obvious!

And all this happened when I was 45. From first suggestions, formation of hypothesis, through self discovery and the diagnostic process, discovering other autistic people, taking my first tentative steps into becoming part of the autistic community, becoming a blogger, and starting the process of reframing my past and pondering what might make a more suitable future than the one that I’d been working towards all my life (and failing to achieve).

There’s loads more to do and loads more to learn. I’m still reading and watching and working out how to respond to people’s questions. I’m still trying to work out how to respond to my OWN questions – this is not something that happens overnight, and my views on things are still constantly changing and evolving in the light of new information. This is a process that will probably continue, to a greater or lesser extent, for the rest of my life.

But one thing is fixed. For the rest of my life, the year during which my age was 45 will forever be one of the most important years of my life (maybe even THE most important). The twelve months that have just happened have undoubtedly changed my entire identity (yes, it really IS that big – I am of course “still me” in many ways, but the knowledge I have gained in the past year means that my life will never be the same again – my past looks completely different now, and the way I live my life and feel about myself and my place in the world has changed forever – this is not a bad thing, rather a great relief and liberation from years of pretending to be someone I wasn’t)!

Tomorrow will be my first birthday as a known autistic (obviously, I’ve been autistic on all my other birthdays, but just didn’t know). I’m not sure how I feel about it (thanks alexithymia), but I sort of think it should be significant somehow. Perhaps I’ll work it out at some point. I think maybe there is a sense of moving on and continuing to rebuild my life and continuing to experiment and to work out what I’m actually going to DO with however many years I have left on this planet (that isn’t yet obvious to me, having had to ditch many of my previous expectations), but also a year of “this time last year”s ahead, as I continue to process everything that has happened and to review each milestone in my autistic journey with the benefit of a year’s hindsight.

But whatever happens in the future, what happened when I was 45 will stay with me for ever. 45 will never be “just another age” for me. Not only did I get my diagnosis at 45, but the whole process happened within that year. I can’t imagine I’ll ever have another year like it again.

My mind’s still a bit blown by it all really!

But, on balance, in a good way!

Going Back

I returned
To the place
Where life
Fell apart
Last year.

To the scene
Of so many
Meltdowns
And tears
And disasters.

To the memories
Of fear
And difficulty
And wondering
Why
I couldn’t
Just get on with life
Like most others
Could.

A whole day
To pack.
The journey there
Dissociated.

Focusing on
The practical.
Doing the most
Essential bits.
Taking as much
Time out
Alone
As possible.

Starting to learn
To accept
Help
Even though
It is counter
To everything
I have ever
Worked for.
Having to change
My mindset.

Struggling sometimes
Someone talking
To me
When I wasn’t able
To process speech.
Conflicting instructions.
Near meltdown
But not quite.
Speech gone
For just over
Five hours.

Consciously being
With other people
When I couldn’t speak.
Instead of texting in
“Sick”
And staying away
As I would have done
Previously.

Senses on overload
Lights too bright
Music distorted
I knew it sounded
Wrong
As if being played
Through a
Faulty
Amplifier.
Not what Mahler
Intended!

Knowing
Some things
Would help
But lacking
The ability
To do them.
Inertia.
Energy.

Living away from home
Minus usual care
And routines.
A few meals
Missed,
Some medication
Missed.
Executive functioning
Declining
Sensory spoons
Depleted
Social spoons
Deficit.

Feeling guilty
Because
I wasn’t able
To contribute fully
To everything.

But

People helped.
No rehearsals missed.
Near constant
Low level stimming
Was fine.

And mostly
The music
Was wonderful,
Not distorted,
And I can
Still
Play
The viola.

Learnt so much.
Started to understand
Just WHY
So much of
This stuff
Has always been
So hard.
Now I understand.

Beginning to adapt
To the new life
With the new knowledge.
Starting to accept
That I need
To do things
A bit
Differently.
Consciously
Saving energy
Where possible
Now I know
What uses it.

There is more needed.
It isn’t all solved
Yet.
I still find
Asking
For adaptions
Really hard.
Partly because
It is so new
And partly
Because
I don’t yet know
What is possible
Or what I need.

But I am starting
To realise
Why some things
Feel bad.
And always have.
And even though
They still do
Understanding WHY
Helps.
And I can start
To notice
How things
Drain my energy.
And why being
Near to other people
Is tiring
And why “washing”
With vile slimy wipes
Makes me feel
Even worse
Than I already did
Without my bath.
Sensory hell.

It is still
Very much
A work in progress
This new life.

And I need
So much
Recovery time.

But it is possible
To enjoy
Something
I had thought
Might
Be beyond me
And so
Lost for ever.

There are
So many
Good things
I don’t want
To lose.

Maybe
I can keep
This one.

I went back.

I survived.

Busy and Hot

When I woke for the first time today, at around four in the morning, I asked myself what I was going to do with the day. I had all sorts of plans in my head for things I might do, places I might go, what I might write. As it is, I eventually fell asleep again, and have now only just surfaced. It is nearly midday and I know that the plans I made in my head at four this morning are, on the whole, not going to happen.

And after a brief moment of beating myself up about it, I suddenly realised why I was so exhausted and why I haven’t written a blog post since Sunday and why I didn’t write the one I wanted to on Tuesday or the others that I still want to write (one in response to something) and why my admin is behind and I owe people messages and e-mails and so on – I have been busy!

The last two weekends I’ve been playing music. It’s been amazing and enjoyable, and brilliant to meet up with friends (old and new) and to play under a conductor who’s an absolute pleasure to work with. The concert was on Saturday night, so I was pretty wiped out on Sunday, but felt moved to write the rather rambling blog post on pride anyway. Monday I went for a short run, which, given my recent running activity, was a big deal. Tuesday I went to visit my best friend. Wednesday I went for a coffee then went to buy a few groceries.

And all this at temperatures above 30 degrees, which we’re really not used to round here, and which drain my energy rapidly. Furthermore, there is no airflow through our flat, so the only way to stop the hot air stagnating and to get any sort of breeze is to use fans. The noise of the fans is really not good for me and overloads me pretty much to the point of meltdown within a fairly short space of time.

Maybe, to most people, that level of activity and a bit of hot weather really wouldn’t be a big deal. When I think back to the “me” of the past, before two huge burnouts, before mental illness was even identified, that “me” would have looked at the “me” of now and thought myself utterly pathetic. I’d have been unable to comprehend why I couldn’t just get my act together and, with enough willpower, just get on with it.

Of course, the “me” of the past being like that, forcing myself to live that “normal” life for so long, doing what was expected of me and using vast amounts of energy and willpower to do so (largely because I assumed everyone else was doing the same), is a large part of what has caused me to have two major burnouts and to have arrived where I am now, with rather depleted functionality and very low energy levels.

Fortunately the “me” of now is starting to learn. And, a few minutes before writing this post, I realised not how LITTLE I’ve done over the last few days, but how MUCH I’ve actually done. And, I had, once again, to remind myself that my mind works a bit differently from most people’s and that I need more downtime, more space, and that things that come fairly easily to many folk, are actually rather challenging and energy consuming for me.

So the plans that I made at four this morning are now dropped, forgotten. Today I need to focus on self-care. I need to stay at home, even though the temperature in the flat is still 28.5 degrees and the place smells stagnant and nasty because neither of us has had the energy to do any serious cleaning and there’s no airflow because it’s so still. It’s not ideal, but it’s not a choice, because I need the solitude. I need not to go through the anxiety cycle of going out and working what to say to people and so on.

If, and only if, I have enough energy beyond that required for basic self care, I shall try to sort out the jobs lists and my diary, and sort out what I need to do, even if I don’t actually do it, but I expect it won’t get much further than that. As I’ve increased my levels of activity, and as I start to gain a bit of functionality as I emerge from burnout and from the whole “discovering I was autistic and getting diagnosed” thing and all the shock and relief and complete re-evaluation of my life, it’s tempting to think that I can just “go back to normal” without any consequences. But, of course, that isn’t the case.

And, interestingly, the blog post I wanted to write on Tuesday was the one outlining how I now am, four months after my diagnosis (it was the four month anniversary on Tuesday). And I’ve sort of gone and written it anyway – at my second follow up appointment it was noted that the increase in activity and my “recovery” carries a price, and that I need to remember that. This week that price has been that my head has become more and more muddled, I’ve struggled to hold conversations and to form words, I’ve struggled more with basic stuff at home, I’ve retreated once again into eating the same thing every day, and my decision-making capabilities have plummeted.

My level of satisfaction with life has also dropped – despite what might be perceived by someone from the outside (I’ve been seen playing music, going for a run, visiting a friend, and having a coffee) possibly indicating that I am happier with life and doing more “enjoyable” things, I’ve actually felt less happy, more frustrated, and generally more anxious. Yes, I’m really pleased that I got out to play in a superb concert and that I went for a run etc. because these are things I love doing, but they still drain my batteries, and a combination of the heat and trying to fit in other stuff has meant I haven’t been able to recharge properly.

Ironically, a viewer from outside who observed how little I’ve stimmed over the last few days might decide that it’s some sort of “improvement” and some sort of “your autism’s getting better” thing. In fact, the reverse is true. I desperately want to rock hard on the sofa for a bit, to wrap myself in compression, and to hide under my fleece blanket – these are all good and lovely things and part of how I cope with having to deal with the outside world. But I can’t cope with doing them at the moment because it is TOO HOT. So not only am I dealing with bad sensory stuff (noise of fans, feeling sweaty and nasty, smells stronger) because of the heat, I can’t mitigate with the good stuff.

So, in an odd way, I’ve looked more “normal” over the last few days, but the effect from inside is that I’m feeling increasingly dysfunctional and anxious and edgy and irritable. This “how autistic people look vs how they feel” thing is something I’m increasingly thinking about and want to write about some day, because I’m beginning to get the impression that the two are much more likely to be inversely than directly correlated.

In the meantime, I do observe that four months have passed since diagnosis, and that life is continuing to change. The people who wrote Tiny Glimmers back in January and Eight Weeks On back in April would have been amazed by what I have just written above and by what I’ve done in the last few weeks, so even where I’m still failing and still not achieving what I want to achieve (that will probably always be the case for me as my natural inclination is to constantly aim for more and to push to achieve goals and so on), I’m actually achieving much more than I was, which is, of course, progress.

But today “progress” will be achieved by resting and gentle tasks and self care, not by pushing on through. That way, I hope that I’ll be able to start to recharge my batteries enough to be able to do more running and music and socialising and to be able to think clearly enough to deal with admin and communication and to write more of the blog posts that I’d like to write!

Pride

Today is, the internet informs me, Autistic Pride Day!

This is another of those things that, until this year, I wasn’t aware existed. Just like autism awareness day / week / month or whatever, I was pretty much oblivious to all of this stuff, just as I was oblivious to the fact that I was, it turned out, autistic!

I really should pay more attention!

I’m really not sure I can claim to be proud to be autistic, since being autistic was an entirely effortless process on my part – all I had to do was be born! The processes that meant I have an autistic brain went on all by themselves without me having to do anything at all – I just existed in the only way I knew how!

I’m not quite sure even that I can be proud of surviving this far while working to survive in a world that turns out to be a bit more challenging for me than it is for many others. I’ve had several times of trying not to survive and my survival through them has been entirely down to luck. I suspect I only coped with such high anxiety levels because, to me, they were just normal!

Neither do I feel that I have yet done anything much else to be proud of, although I’m at least sufficiently aware to know that some of my friends will tell me off and say “Yes, but you do xyz and it’s amazing…” and so on! I’m still working on this bit, and it’s probably the area where I have the most internalised ableism towards myself – I know I haven’t fully dealt with the issues discussed in Expectations Gone and Career Snake!, and that that’s still very much work in progress.

Furthermore, the society in which I live generally measures value in terms of financial success – it’s all very well being told “well, you write a nice blog” or “that was lovely that you played some music”, but if I show up at the checkout in the supermarket and tell them that I’d like to pay for my food with “nice comments”, then I’ll go hungry. The part of me that was brought up to believe that I would earn my own money and be “successful” in that way is still fighting with the part of me that knows just how little I contribute and how I am entirely dependent upon handouts from others to survive. I can’t even claim to be pulling my weight domestically – I don’t raise kids because I couldn’t have them, and my husband does about 90% of the domestic work in the flat!

Anyway, I digress. This is supposed to be about pride. And, perhaps, pride in a rather different sense, but because of the way my mind works it’s going through all sorts of “pride” things and I now have a video clip going through my head that shows a large group of rather handsome lions roaming around a grassland somewhere in what is probably Africa! But I’m not supposed to be blogging about lions!

So, returning to what the day is supposed to mean, it seems that it’s meant to be some sort of celebration of neurodiversity. There are probably marches and things and parties or whatever, that I’m unlikely ever to go to because I’m not really a marching sort of a person – more of a blogging sort apparently!

It also seems that one of the basic tenets of the movement is that neurodiversity in general (and presumably autism in particular) is part of a natural variation in human existence, rather than some deviation from the norm that requires a “cure” (I’m still at a loss as to what people who discuss “curing” autism can possibly mean – it just makes no sense, given that it isn’t an illness or a disease).

It also seems to emphasise the notion of autism as a “difference” rather than a “disability”. I’m still forming my ideas about difference and disability, and still getting to grips with the whole “medical model” and “societal model” thing. I class myself as disabled (and have done for years, ever since it became apparent how my mental health issues affected my functioning), but I’m still trying to figure out to what extent the disabling effects of me being autistic and mentally ill are a result of my inability to function in certain ways and to what extent they are a result of the society in which I live. I haven’t even managed to sort out what bits of my “disability” are down to me being autistic and what bits are the result of mental illness. There’s a lot of work still to do.

The more I think about all this, the more I realise I don’t know, and the more I feel like I’m only just scratching the surface of issues about minority groups, privilege or lack of it, models of disability and so on. I’m a musician and scientist, not a sociologist, and I’m a bit out of my depth at the moment. There is a lot of observation and learning and thinking still to be done before I can really start to analyse it all.

The other basic tenet of the autistic pride / neurodiversity movement seems to be that it is led by autistic people themselves and is not a day for organisations led by non-autistics! This, I really hope, is something that will prosper. It’s so true that so much autism research and so on is still led by non-autistics and that there is still such a long way to go in really understanding (as I discovered at the recent conference) what it’s like to live as an autistic person in a world that is, for want of a better expression, distinctly sub-optimal for our neurology!

Of course, given the situation I’m now in, I’m actually rather fascinated to discover what it might be like NOT to be autistic – I feel, to a large extent, that I’m just me and always have been, and what I actually discovered when I found out I was autistic was not that I was different, but that 90+% of the rest of the world was different! From my perspective my autism diagnosis was effectively the same thing as most of the rest of the world receiving a diagnosis of allism!

I’d really like to spend a day living with a neurotypical head to see what it was like because it would be fascinating to compare with my own experience. Are there really people who sit still on chairs and don’t find it deeply exhausting and uncomfortable? Is it actually true that there are folk who can chat in small groups without trying consciously to compute every single thing they say and work out when they should contribute to the conversation? I’d be fascinated to discover – though I wouldn’t want to commit to more than a day because I’ve been used to my own head for quite a long time and there might be all sorts of things about my neurology that I’d suddenly miss – I don’t even know at this stage what they might be because I’m so used to my normal being my normal and so unaware of how other types of brains might work! Perhaps the fact that I worry little about things that seem to vex many people is part of my being autistic and I’d really miss that freedom of thought? Who knows? But I do know that I’ve discovered a contentment since getting my autism diagnosis that’s rather nice and that I’m not in a hurry to mess with it!

Anyway, I digress again. And now return to the tenet of autistic people themselves having a voice and being part of the discussion of neurodiversity. That is, of course, part of something that I do manage to do a bit (being a blogger, not a marcher), and, as I discussed in my final conference blog post, maybe an area to explore for the future. Who knows what I’ll be able to do, or what impact it might or might not have, but it’s a possible direction for the future and if I can ultimately be helpful to other members of the autistic community, which I have suddenly, and rather unexpectedly, become part of, then maybe that really will be something to be proud of!