The Preparation

Right from the start things were very different with the second referral. I think the triage service had given some explanation as to what had happened at the first place and had instructed the second place to see me as soon as possible, and we were also much better prepared and aware of what I might need in order to get through an autism assessment without having a giant meltdown part way through.

There was still, certainly, a lot of tension involved. The second place to which I had been referred was in the midst of a reorganisation period – it had, officially, closed and was being reopened under a different name and we had no real idea of timescale as far as when I’d be seen once the reopening had occurred. We also still had the first referral open, and had they been able to find someone to assess me at the first place there was a chance I’d have to go back there anyway. And, of course, there was the whole build-up to go through again, the nagging doubts that I wouldn’t be diagnosed autistic, that I would come home feeling broken and suicidal once more, and that there still wouldn’t be any formal answers as to why my life had been going so badly wrong for so many years.

I went through Formageddon all over again, once more trying to answer everything as best I could and to explain why I’d answered the more ambiguous questions as I had. We were also sent another (different) list of questions to ask my mother, so there were a couple more sessions of phone interviewing and learning even more things about my early life and how I was when I was very small. Everything was, as before, written down, duly answered, copied, printed, scanned, and so on, and sent to the assessment people.

We started to feel a bit happier when good e-mail contact was established between the assessment people and my husband. They acknowledged receipt of the forms and a few other bits of information we’d sent to them, and the appointment for my assessment was made. The third attempt to get a formal autism diagnosis was, it seemed, going ahead.

My husband then received an absolutely superb e-mail that felt very reassuring. It described the building where the assessment would be held, the lighting, the furnishing, and outlined that once we arrived we could organise the layout of the room to be as comfortable as possible. It was made explicitly clear that I was welcome to take cushions, blankets, fidget toys and so on with me, and that we’d agree on a schedule of breaks throughout the assessment time, which was given as around three and a half hours. An outline of the format of the assessment was also sent, and parking at the venue was also mentioned. It felt very encouraging and we started to believe that these might be people who actually knew how to communicate with us, who understood that we needed clear information and practical help.

They also made it clear that we were welcome to send information in advance and that that would be helpful to them and would also mean that if there were things I was unable to explain in spoken words on the day they would already have the information so that wouldn’t be a problem. We’d sent around 60 pages of notes and information to the first centre although there was very little evidence that they’d really looked at it and I felt a bit jaded about the possibility of sending things that I was working hard to produce that might likely never be looked at. However, we determinedly made ourselves take a “clean slate” approach and I set about providing as much information as I possibly could, including sending the original files of some of the early posts on this blog.

Then came an even more reassuring document – a more detailed outline of what we were going to discuss on the day, along with explicit statement that there were no “right” or “wrong” answers. It was made very clear that the assessment was not going to be about “passing” or “failing” some sort of test and that the criteria on which I would be assessed were not some sort of “cut-off” on a quiz, but on a whole lot of different things regarding the way I communicated, interacted, behaved, and so on. This was not a “box-ticking-getting-a-score” thing, but an exercise in observing me and finding out how I thought and felt and communicated.

I set about going through the outline, answering everything as best I could, and saving it to yet another document in the growing “Autism” folder on my computer – another document full of evidence and thoughts, another 10 pages to add. By the time I arrived at the assessment itself, I had sent over 120 pages of 11-point Calibri for the assessors to read, some of which we’d printed and posted, and some of which we’d sent by e-mail, the last batch just days before the assessment itself. The feedback we’d been receiving by e-mail suggested that the assessor was actually reading it too, and I was absolutely desperate not to miss anything out, to tell the full story, to supply as much information as possible. After all, they’d said on the appointment letter that the more information I could supply, the better, so I took them at their word!

The final bit of pre-arrival preparation was an e-mail to tell me exactly who would be at the assessment (two people, one of whom would be asking the questions while the other mainly observed so I wouldn’t have to cope with talking to two people at once), and to inform us that a parking space had been booked and would be signposted and to give us a mobile phone number to contact if we got into any difficulties on the day.

I think we were about as prepared as it was possible to be!

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Summer School

One of the most striking things that happens to so many of us who are diagnosed or identified as autistic late or very late on in life is that as we learn about autism and what it actually means and how it affects our lives, there is this constant stream of “lightbulb moments” where events from the past suddenly make sense and can thus be reinterpreted very differently. Those of us who grew up oblivious to the fact we were autistic but just knew that life was very very difficult (and assumed, since it was all we knew, that that was the case for everyone but that they somehow coped with the difficulties better than we did) have a lot of reframing of our past to do and a lot of moments that we can now perceive completely differently as a result of knowing we’re autistic.

A couple of days ago I was looking through my “on this day” feature on facebook, as I do most morning, and this status from two years ago appeared:

It is so nice to be alone. Away from all the other people and “group work” (i.e. HELL). Just me, York Bowen viola music on the laptop, a bottle of wine, and a box of maltesers.

I was instantly struck by my relief at being alone and my assertion that group work was hell. I decided to have a look at some of the comments I’d made on the status and they made for further interesting reading:

I’m at Open University Summer School. There are people everywhere. They’re lovely people, but I’m just not good with lots of people all at once. They all have social skills that I just can’t do. The work itself is no probs, but then we’re told to “discuss this with the people sitting around you” and “work in groups” and all I hear is noise. I don’t have the filters for it. Everyone else chats and laughs and I feel lonely and isolated. I drove off campus this evening and found a Tesco to buy stuff then just drove, with music, on my own. It was the most soothing bit of the day.

I limit parties and things because I know they use so much energy and I often need a lot of time to recover. If I was an animal in the wild I’d be a polar bear or something that lived a largely solitary life.

Interacting with people all day is just exhausting. The maths is easy, and the people are nice, but there are so many of them, and it’s so tiring having to smile and pretend to be normal all day.

This is going to be a very very long week. People keep telling me I’ll love it. I’m not loving it. I arrived and broke down in tears and collapsed. If there was a way I could get out of it I would. I hate it.

All the above remarks in italics were written over a year before I knew I was autistic. As far as I knew at that time I just had mental health problems and, at the time I believed the only current issue I had was what I believed to be “normal” levels of anxiety. The disability officer from the course had even called me the previous week to check that I was OK (having read on my student record that I was listed as having bipolar disorder) and I’d assured him that I was between episodes and that everything was absolutely fine and I didn’t need any accommodations but thank you for asking etc etc. The only thing I did check was that I would have a bedroom on my own – I have known all my life that sharing sleeping space with anyone other than people close to me and selected by me is absolute anathema and on the occasions where I’ve been forced into that situation I’ve spent the night anxious and sleepless, desperately waiting for morning.

So I set off to Summer School without any adaptions in place. And I struggled from the outset. I arrived at registration in tears, desperate already to go home, but knowing that this was a compulsory course and I’d fail the degree without it. I sat through a lecture about group work and about how we were being assessed on our interactions with the other students (all of whom were complete strangers to me) and that we had to be actively participating and not looking at the ceiling or staring out of the window because we would otherwise be marked down. The fear started to rise. My anxiety levels started to skyrocket. I remember being desperate to get out and to go home. No degree was worth this amount of torture, surely?

And, as we moved into the group work session and I sat with three complete strangers trying to design some sort of mathematical modeling experiment, trying to look into these strangers’ eyes and to “look interested” and to do all the things we’d been told to do in the lecture, the tears started to roll down my face and then the crushing panic as the noise got louder and louder and the voices of the people around me started to blur into this horrendous and incomprehensible sound and then it felt like the walls of the lecture theatre were going to crush me to death, and the inevitable meltdown happened.

I sat in the corridor outside the lecture theatre rocking and crying until someone eventually found me. I can’t remember exactly what happened next, but it became obvious that I wasn’t going to cope with being a “normal” student. Some adaptions were made for me – I was moved to a different overall group with fewer people, and it was agreed that I would always have a seat near the door or on the end of a row, not in the middle of the room.

It helped a bit, but after a couple of days I was finished. I’d also pretty much stopped eating by this stage (the dining hall was another source of noisy clattering fear and social interaction, and any acquisition of food that required any input from me was impossible for me – I stood in front of a toasting machine one morning at breakfast and cried because I just couldn’t work out how to get toast – I would have gone hungry that morning had another student not made some toast for me and put it in front of me).

I was in touch, as usual, with friends and my husband via facebook. My husband offered to drop everything and come up on the train to see whether he could sort me out and calm me down and get me eating again. The course directors were initially reluctant – I wasn’t registered as needing a carer, and they were also suspicious that my husband would arrive and simply take me home. However, it was fast becoming obvious that I wasn’t going to last much longer on my own anyway so my husband was allowed to join me and he arrived and brought my “safe” foods and got me eating again and somewhat back on track and I managed to stay for the rest of the course.

I remained very stressed for the rest of the week, but as the end approached things did improve. I self-medicated heavily with alcohol and caffeine in order to cope, and landed up in a group with some very good people who helped me through the group work and seemed fine about having to sit near the door in every room (I’m still facebook friends with them, two years on). Perversely, one of the parts of the course that many people were worried about was the presentation to a room full of tutors and other students – for me it was the easiest and least stressful part of the whole experience! This seems to be the story of my life – I find things that others find so easy that they don’t even think about them really really challenging, and things that others find challenging I often find unproblematic!

And, it’s only now, two years after the event and eleven months after starting seriously to investigate the possibility that I might be autistic and what that even meant, that I can now understand just WHY Summer School was so difficult for me, and just how disabled I am and how much support I need at times in order simply to survive. Back then I didn’t have a clue about “sensory spoons” or that not having the ability to cope with multiple conversations in a room was the result of the way my brain was wired rather than me just being hopeless. I’d never heard the phrase “executive functioning” and couldn’t work out why an unfamiliar toaster might make me cry and I simply wouldn’t be able to work out how to use it. I didn’t know just how much energy I was using coping with eating whatever food they provided rather than my own routine “safe” foods that I usually had at home. I didn’t know why the lecture on group work made me so terrified, and I couldn’t begin to comprehend how the other students could spend all day in lectures and group work and chatting at coffee breaks and then go to the bar in the evening and STILL cope without crying and breaking and sobbing and rocking in the corridor – I just assumed they were geniuses of some sort with unlimited energy and resources and that I was broken and pathetic. I never even found the bar!

Now it’s all explained. And now I have to work out what to do when I go away from home on my own in the future. I still don’t have it worked out. I’m supposed to be going away in a few weeks’ time and I need to work out what accommodations might be possible and what I will need in order to get through the week. Then I need to communicate it to the people concerned, which is even harder. I’m struggling with it, even with the knowledge I now have, and when the confirmation e-mail arrived in my inbox the other day I went into a state of abject terror and nearly cancelled. I’m still trying to work out what to do so I don’t end up with a repeat of the Summer School scenario.

And although I now know why all these things have gone wrong, I’m still less than a year into the whole “knowing I’m autistic” thing. I have no problems with being autistic – it’s simply the way that I am – but asking for help has never been something I’ve found easy, and I’m still trying to work out exactly what “help” would actually be helpful, which is another huge job on its own! And after 4 decades of believing that when I couldn’t cope it was my fault and I just had to deal with it, the change in perspective is absolutely massive.

This is still, I keep reminding myself, a process. And, as I keep hearing from those who’ve been through the same process, it will take time.

I hope I’ll be able to work it out eventually!

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.

Trail Return

So last weekend I went back to the place where I fell apart while playing music last August.

And this weekend I went back to the place where I fell apart while running in my last race before burnout hit so badly that I was forced to take a complete break from running, to the place mentioned in The Background, where I eventually pulled out of the race, believing that I had some sort of mystery illness because I felt so dreadful.

This afternoon we drove to what is, during that race, aid station 4 (and which is a car park most of the time). I parked the car in pretty much the same place as I sat with a race official almost a year ago, trying to explain that I was really not well, but I didn’t know how I was not well. I didn’t understand, then, why everything was so painfully loud and bright and hot, or why I felt constantly as if I was about to be sick or that I really felt that I needed to burst into tears but couldn’t.

I didn’t understand then why, at the previous aid station, I’d felt like the trees were coming towards me, I’d been unable to form the words to ask for a cup of tea, and the voices of people around me were distorted and incomprehensible.

Neither did I understand why the world around me seemed to be breaking into a million little fragments, and I couldn’t make sense of any of them, still less run an ultramarathon.

Back then I put it down to a combination of “mental health problems” and “maybe a virus”. It would be a few weeks more before someone suggested I might be autistic, and another month before I started to take the idea seriously.

I’ve gradually started to return to running over the last few weeks. I went out and did a couple of kilometres, then 5K, then 8K, and I also did 12K of strenuous walking earlier this week. All of this, however, has been on the road, mostly not far from home where the running was concerned.

But today was different. For the first time in a year I took kit with me and changed into it elsewhere (which requires a lot of executive functioning energy). I drove and parked out on the trail. And I did 8K of trail running, on gently undulating decent path, admittedly (it absolutely wasn’t fell running).

Once again I drank warm disgusting water out of the bladder in my backpack, once again I pushed myself hard physically (I’m actually pleasantly surprised at how much residual fitness I’ve retained, though I have some way to go before I am where I want to be). It was also a hot day, which added somewhat to the challenge.

And I chose to go back to the very same place where I’d fallen apart in the race nearly a year ago. To deal with the psychological stuff too, to run the same path that I’d previously staggered, before collapsing, ill and broken, by the side of the trail, from where I had to be rescued by race officials and a car to take me to safety.

Today was an interesting experience. The physical bit was actually quite easy, and I didn’t feel any great psychological impact, though the memories of sitting in a folding chair, sipping flat coke, and desperately trying to find words to convey to the race officials what was wrong with me (I didn’t know, of course) were very strong.

But, what I did experience, very strongly, was exactly the same sensory overload that I had done the year before. As I got back to the car and met up with my husband (who’d been running in the opposite direction – we rarely run together), the sick, dizzy, bad feelings overtook me and I knew I was totally wrecked. I sat in the car and suddenly felt the familiar ill feelings engulf me. My running kit was suddenly unbearably constricting and I simply took it off (my husband attempting to shield me from a man in an adjacent parked car – though by that stage getting the clothes off was all that mattered to me). I put my ordinary t-shirt on, then bashed my head against the door frame of the car several times, which helped, and my husband suggested that maybe we should walk around a bit to dissipate some of the evident tension.

So I ended up walking circuits of the car park, flapping my hands wildly, while my language fragmented and sentence structure fell apart, and I ended up monosyllabic.

My husband, who is quite accustomed to me being a little out of the ordinary simply remarked “You really are mad as a box of frogs aren’t you?” I concurred, and pondered the madness of frogs in boxes, as I usually do!

By the time I felt well enough to get back into the car to drive home my speech had completely gone, and as I type this, 3 hours later, it is just returning, in effortful monosyllables (and I’m still really stimmy and unable to sit still). However, with the loss of speech, the ill feelings started to subside, and I was able to drive us home perfectly well.

And I’m pleased, because I did something today that would have been unthinkable even a few weeks ago. I’m still very burnt out, still a long way from well, and I now know that one of my major challenges when running out in a world with so much light and noise and so on is to deal with the effect that the sensory overload has on my system. It’ll be even more challenging during races when I’m going to encounter other people in large numbers, and going to have to find a way of explaining how much energy it takes to speak to them or to process their words if they speak to me. There’s a whole lot of learning and so on still to be done.

But today I got back out onto the trail. I managed to do something I haven’t done for nearly a year, and I observed how far I can push myself before my system breaks.

And it’s so much easier to deal with now I know WHY it happens. There’s a long way to go until I figure out how to deal with it all, but at least knowing what I’m dealing with is a good starting point!

It was good to be back. Doing what I love, starting the journey back to long distances, when I hope to be out there on the trails, running through the night again, and experiencing the magic that is ultrarunning!

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!