Another Step

Having admitted to myself that I was autistic, and having already approached the doctor to be referred for diagnosis, I knew there was something else important that I had to do. I had to let my family know what I’d discovered, and the obvious place to start with that was to call my mother.

I recorded my feelings about doing this:

Deep deep breaths. That was a biggie. Told my mother.

And then noted some of the things that she had immediately said when I’d told her that I would need information about my early childhood and please could she start thinking whether there were any incidents that occurred in my early life that she could remember, or any ways in which I differed from my brother (who is not autistic) when we were young, and could she possibly just start thinking back to the time of my early childhood and triggering memories because the assessment people would want to know.

And without even a pause for breath, my mother remembered being summoned to my primary school (as I’ve described in Circles) when I was 4 years old. She recalled me learning to read at age 3. She recalled my nursery teacher commenting on my behaviour at nursery. She recalled something about a hearing test at 7 months that went wrong because I didn’t behave like a 7 month old should and the person administering the test telling her off about it. She told me how I didn’t respond to spoken words as a baby, only to singing, and how I hardly slept and constantly fidgeted in my pram.

And all this was instantaneous recall, the moment I asked, with no pause for thought. Memories from over 40 years ago. Little things, none of which seemed significant at the time, and none of which was ever followed up (because it was the 1970s and I seemed healthy as far as anyone could tell and when my mother asked what babies were supposed to do (I was the first child and my parents were young and inexperienced) she was told that all babies develop in their own ways so not to worry about anything), all started to indicate that my development when I was very young was, in fact, rather a long way from what would be considered “normal” by most people.

This first conversation was, it turned out, only the “tip of the iceberg” as far as my childhood was concerned. There were further pieces of information to follow, and I’m still, really, in the process of absorbing them all and trying to go through the questionnaires that we did as part of the assessment process. Maybe I’ll manage to write about it all thoroughly at some point, but that point is not yet.

My instant reaction to these revelations was to make a bunch of hashtags:

#theplotthickens
#wouldseemivebeencausingtroubleforalongtime
#thiswholethingisratherextraordinary
#ialwaysknewiwasabitunusualbutbloominheck

I subsequently went through a phase of finding these discoveries about my early life really rather odd and weird, and in many ways, traumatic. It was strange to think that there were things I’d never have discovered about myself and my early life if I hadn’t been going for an autism diagnosis. My husband and I had started to document my own memories of childhood a couple of weeks earlier, but this phone call to my mother took things to a whole new level, because I started to discover things that weren’t part of my existing life narrative.

Furthermore, since I was never able to have any children, I didn’t know whether the things my mother was telling me about my early life had any resemblance to any sort of “normal” childhood development or not, and I ended up having to do a lot of really triggering research to find out, research that brought back horrible memories of infertility clinics and pain and heartbreak and failure, so it turned out to be a triggering and difficult experience from that point of view too.

And, of course, my own memories of childhood had to be activated. And many of them weren’t that much fun either – I was bullied consistently through school and even when teachers tried to find out why things weren’t as they should have been, they weren’t able to come up with any answers, despite sometimes trying, as I described in Head’s Office.

These things are things I still haven’t yet worked through, things that still upset me, things that I know would have been picked up if I was a child today. I can’t help feeling that had I known that I really was different when I was growing up, not just naughty, that I would have felt less bad, been less self-blaming, and not become the suicidal burnt out adult I now am. I’m still not really in a place where I can consider all the things I want to consider – I have to do it a bit at a time, because it is difficult.

My mother, somewhat comfortingly, said to me a few months after that first conversation, that she wishes she had a time machine. Of course, there are so many factors at play that it’s impossible to say that changing one thing would have produced this result or that result (I KNOW all the stuff about autistic kids being “written off” and told they’d never be able to get anywhere in life – I had exactly the OPPOSITE problem and was consistently told how bright I was and given massive expectations accordingly, expectations that I could never fulfill so I was doomed to failure). However, maybe I’d not have been chastised for meltdowns, not been forced to wear wool polo necks which hurt me and so on, and not have learnt, through my early years, to behave and to internalise everything because I was frightened of the consequences and the punishments.

Furthermore, because I learnt fast and turned out to be academically able, by the time I was at secondary school exam stage nobody worried about me. I was succeeding academically, top grades of my year, therefore I must be happy. What nobody knew is that I hardly bothered revising for my O-levels because I assumed I’d be dead by the time the results came out. I didn’t tell anyone because I’d learnt by then that you just didn’t talk about that sort of thing. You worked hard, you behaved, you churned out the exam results, and everyone was happy. It was all part of the act.

Except that the act had a massive cost for me – the thing that had eventually made me as well-behaved a child as I was able to be, turned me into a mentally ill twentysomething and a burnt out thirtysomething. And nobody really knew why until I was in my mid forties.

Getting an autism diagnosis late in life is a weird thing. It opens all sorts of cans of worms that have been sealed shut for decades. I had long since closed the door on my childhood, and on everything to do with children in general, sealed away in a place in my head marked “Do not open – just move on with life!” but I was forced to reopen the door, to take the cans off the shelves, and to let the worms loose all over the place. It was part of the assessment, and it is part of coming to terms with why my life has turned out as it has. It’s something that needs to be addressed as best I can in order to move on and try to build some sort of future with whatever life I have left. I’m not sure it was something I particularly wanted to be doing at this point in my life – having just moved away from all things child-related after my own failure to have any, the last thing I needed was to go back to my own early life – but it turned out to be necessary, and perhaps going through the painful stuff now means that there will be less of it buried and I’ll eventually be less mentally ill as a result, more at peace with it all, and maybe, possibly, more at peace with my own childlessness and consequent response to children, which is something I still struggle with terribly.

And, as I have read in so many places and am experiencing for myself, getting an autism diagnosis late in life is not only about the future, and learning how to live from now on, but also about reframing past experiences, reviewing all of life that has gone before, looking back at so many times when things have gone wrong, or been inexplicable, and looking at them from an autistic perspective. It’s part of the process of making sense of life, and, of course, the later the diagnosis, the more of life there is to go through.

And in my case, it’s not just me who is reframing past events. Many of my friends have now made sense of experiences they’ve had with me over the years. My husband now understands things that have long been slight oddities in our marriage. And my family are trying to understand the whole thing.

I made the first phone call to my mother a year ago today. It had taken nearly 45 years for her to find out why her non-sleeping fidgety baby had messed up a hearing test at 7 months old. As soon as I asked the right questions and explained what I’d recently discovered, it became obvious.

I didn’t even know I’d had a hearing test at 7 months until I started gathering information for an autism assessment!

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Typing The Words

Although the notion of me being autistic had been suggested by several people throughout the month of August 2016, and I’d started to research the idea seriously on the 23rd August, and then been to see my GP to get some sort of outside opinion on 16th September, by this time last year I hadn’t yet actually admitted to myself that this whole “autism hypothesis” thing was anything more than, well, a hypothesis!

I had, however, assembled a really tiny chat group on facebook, because I needed somewhere to be able to talk about what was going on, and the thought of declaring myself autistic on my main facebook wall (where most of my social life takes place) was WAY too much for me at that point. Furthermore, nobody outside of my immediate “every day” circle, or who hadn’t been there over the summer, knew what was going on. I was still getting used to the idea, and trying to explain to other people something that I barely understood myself would have been utterly impossible.

So, a few days after seeing the doctor, I set up the tiny chat group, and added just a very few people – really those who had happened to be in the right (or maybe wrong) place at the right (or wrong) time. Several were people who already knew what was going on, some had already helped me in some way, some had been through the same process, and some were folk who I simply knew I could count on because I’d been able to in the past.

The group became a sort of journal for me, although this time a year ago I didn’t know it was going to be that way. It was also, between September and December 2016, an absolute lifeline. I needed to talk about what was going on, and not just to my husband, and, thankfully, I found a way of doing so. There were around half a dozen people who endured hour after hour of me going on and on, and propped me up and kept me going through those times. I shall be forever grateful to them.

I hadn’t, at this stage, even discovered that there were autistic groups on facebook, neither had I found blogs by other autistic adults. That would come later, and even then I joined one or two groups and lurked silently, not even daring to comment, because somehow I felt like I wasn’t allowed – the groups were evidently full of “proper autistics”, real grown-up ones, not like me, who was just some random person who was a bit odd! They all seemed to know stuff I didn’t, so I silently read and learnt, because that was all I could do at that stage.

When I eventually did discover blogs, the best I could do was to follow their facebook pages if they had one. I didn’t, at that time, have a blog account that I could use, because I hadn’t set this one up yet, and, again, like the facebook groups, I wouldn’t have dared to comment. I’m still struggling a bit with the interaction element of blog commenting and even responding to comments on this blog – I need to have a very high energy day to be able to respond to comments (which, I assure those of you who have made them, I have read and will respond to) in the ways that I’d like as it takes many more spoons than simply writing a post and putting it up. This is my equivalent of presenting a paper, which I can do relatively easily on about 50% of days, but taking questions afterwards I’m still finding challenging, as I mentioned in Responding and Communicating.

So, for the time being, it was my tiny group of trusted allies, some autistic, some not, and, of course, the ever growing pile of books – once I’d bought the first couple from Amazon, the Amazon “suggestions” did much of the rest of the work, and buying books from Amazon was something familiar and easy, so that was what I did!

And, it was one year ago today, in that tiny group, that I first typed the words quoted at the bottom of The Discovery, and, after just a few weeks of suggestion and investigation, started to identify as autistic. It’s almost as though today is the first anniversary of me disclosing to myself!

I actually accepted the idea rather easily, mainly because, once I started to discover what being autistic actually was, it became really obvious that I was it. Although only months earlier I’d still just had some vague notion that autism was mainly something to do with small boys who didn’t talk or brainy computer geeks who took things rather literally or some sort of special educational needs thing or savants (yes, I was as susceptible to absorbing the stereotypes as many other people are, and I certainly didn’t believe any of the above related to me in any way, and neither had I ever had reason to wonder), as soon as I started to investigate and learn the full reality, it was obvious that it applied to me.

Interestingly, looking back, what I didn’t know a year ago was just HOW MUCH autism applied to me. I had yet to discover things that my mother was eventually to remember about my early childhood – things that I would never have discovered had I not gone for an autism diagnosis. At the time there was still a long way to go with the process of discovery (and I suspect there still is – I’m still getting moments where I suddenly realise something I’ve always done is not just “me” but is an autistic trait).

And although it felt weird because it was new, I had no problem with the idea of the identity “autistic”. I pick up from various places online that there is, apparently, some sort of stigma attached to the word, but I didn’t feel anything bad about it. I suspect that’s partly because of where I live and the people I come into contact with (there are very few of them and many are also neurodivergent or allies), partly because I had already had two decades with several mental illness labels so “autistic”, although new, and different, was, to me, just another thing to add to the list, and partly because I’d been used to being different from other people for so long, that actually it seemed pretty cool to have a name for the sort of different that I was! Furthermore, discovering that I wasn’t naughty and lazy, as had previously been thought, was such a relief that I embraced “autistic” with open arms!

And so, a year ago today, I typed the words that I’d realised, only a few weeks after the first suggestions, were absolutely correct. It did feel strange, unfamiliar, and new, in the same way that “I have bipolar disorder” had felt strange nearly a decade earlier, and “I have depression” had, a decade before that, but it also felt right, and still does. However, a year later I don’t have to type the words on a tiny chat group on facebook, and I don’t then need to then jump up and down going “fuuuuuuuuuuuuuuuck” to recover from the experience. I can type them on open facebook, on a public blog post, and I can even, now, relatively easily (as long as my words are working) just tell people.

That feels like quite a big change in the past year. And it had to be a gradual process, while my brain adapted to the new identity and I got used to the knowledge of what sort of brain I have. But the same words still apply, and these days they’ve lost almost all the “this feels a bit weird” stuff, and are now just a factual description of my neurology coupled with a big part of my identity.

I am autistic.

Wild Idea?

A year ago today I posted the following status on my facebook wall:

What a day. Along with flu jab and asthma review, a very successful meeting with the doc who listened to a whole load of my waffling and has put in a referral to the sort of docs who will try to fathom what’s going on between my ears!*

Feels like a huge relief and real progress.

*good luck with that then folks!

Since, at the time, I wasn’t telling very many people about the “autism hypothesis”, I didn’t elaborate further on my visit to the doctor. It was easy just to talk vaguely about what might or might not have been going on between my ears and also to refer, as I did in another post, to “head stuff” because it had been well known for years that I had considerable mental health problems and I was already totally open about them, so, for most people that probably covered it.

What I didn’t mention at the time was that we’d purposely made a double appointment with my GP, and that I took my husband and about a dozen pages of notes with me. We’d made the notes while out on a walk a few days earlier (“Starting to examine my childhood”, from Still Here), taking 25 kilometres and six hours and several cups of coffee to persuade my brain to start thinking back to my childhood, and to pause every so often while my husband wrote my rambling thoughts down in a notebook he was carrying. I think very much better while on the move – in the car, walking, running – so it seemed like a good way to approach things. It had been a strange process, forcing myself to think back and to remember things I hadn’t thought about for decades – as far as I was concerned, the “real childhood memories” file had been closed long ago and I just remembered the sanitized version as part of my life narrative. I certainly hadn’t tried to remember the difficult bits, the painful bits, the bits that were needed for an autism diagnosis.

We’d already been at the surgery for some time before the appointment with my GP because it was also time for asthma reviews and flu jabs, so we’d seen the asthma nurse and discussed inhalers and so on first. By the time we were in the waiting area for the doctor I was ready to go home. I regretted that the only way of getting to the surgery was by car and so I couldn’t even have a drink to try to calm myself down. We sat and stimmed in the waiting room (although we still didn’t refer to it as stimming at that point as we’d only seen the word a few times and weren’t quite sure what it actually meant), and I was determined not to bottle it and give up.

I didn’t even know, back then, what “self-diagnosis” was. It didn’t occur to me that, having found something that might be “wrong” with me, my first course of action wouldn’t be to go and see a doctor, not because I had any notion of being “fixed” but because I believed that, as with bipolar disorder, with which I had considerable experience, autism was something the medical profession might help me manage (that turned out to be somewhat optimistic on my part)! I also, even at that early stage, needed official permission to “be autistic” and the thought of telling anybody that I was without an official piece of paper seemed far too wild to even consider. My thoughts on official diagnosis were developed further as time went on, and I examined some of them in Why Bother?

Once we’d been called in for the appointment, the conversation ran something like this:

Me: Hi Doc, this is going to sound well random and well weird and you’ll probably think I’ve gone even more bonkers than I usually am, but I had a bit of a strange summer and my head went a bit wrong and a bunch of folk said they thought I might be autistic or something so I read a couple of books and we made some notes about all sorts of stuff and, er, here we are, and, yes, I know it’s a bit barmy and a seriously wild idea and stuff and… but anyway… erm… well…

(all the time, jiggling my leg, flapping my fingers, and staring fixedly at a bit of badly done paintwork in the corner of the room)

I then looked hopefully at my husband because I’d run out of what to say next.

The doctor saved both of us having to say anything.

Doc: Oh of COURSE! It’s so absolutely obvious now you mention it. So sorry for not knowing earlier, but with only short appointments and so much to get through and so little time to spend with you…

(then, the doc paused, as if a thought had just come out of the blue)

Doc: Didn’t you have an incident at the swimming pool a few years ago? And they called us here and said you were violent and aggressive and you came in and said you weren’t violent at all but you were scared and distressed and they’d got it all wrong…

(there followed discussions of meltdowns, of how these episodes had been happening all my life, and of various other things, and by this time I was rocking hard in the chair and the pennies were dropping fast in the doc’s head, just as they had in mine a couple of weeks earlier)

The referral for formal assessment was being started before we were even out of the door. My GP had needed no convincing whatsoever. I didn’t know then that that had been the easy bit, and that finding somebody who could actually diagnose me as autistic would take a whole load more work, and that “letting the medics take it from here and look after me” wasn’t an option, and that I’d have to do my own research, fill in forms seemingly infinitely (that’s what it felt like at the time), and that I was only at the beginning of a very long journey, but that journey was underway.

I left the surgery and went round to my best mate’s house for tea. I told him that yes, the doc thought I was autistic too. He already knew what was going on and was totally cool with the whole idea and thought it made absolute sense. I then went off to a rehearsal that evening, and then away for the weekend to play music, still very fragile and broken after the summer, still reeling from the discovery, but starting, already, to accept myself as an autistic person, even at that stage. I still hadn’t actually said that I WAS autistic at that point – every time I mentioned it to anybody it was “it’s been suggested that I might be autistic” taking the label (or diagnosis, or whatever you want to call it) for myself without anyone giving me permission to seemed to be terribly presumptious at that stage, so I stuck to “might” and “a possibility” and so on.

The fact that my GP believed it made a huge amount of difference though, and something that had been “just an idea being pondered by me and a few mates” became something a little bit official. We’d told someone “proper”, who hadn’t dismissed the idea, and had, in fact, confirmed it.

I regained a little bit of confidence. Maybe I wasn’t totally crazy after all. Maybe this wasn’t some sort of “weird thing that happened over the summer but now we’re back to normal life everything just goes back to how it was and the “holiday romance” is over!”

It still felt really odd. Two months earlier I’d had absolutely no inkling that I might be autistic at all. I wasn’t one of those people who’d “suspected for a while” because I didn’t have enough knowledge of anything to suspect. I’d only started taking the idea seriously and investigating it properly myself about three weeks earlier. The whole of life felt so very peculiar and weird and like it had all gone a bit crazy somehow. My mental state was still fragile, and was, in fact, although I didn’t know it at the time, getting worse. Things felt wrong…

…but things also, suddenly, after over 4 decades of a different sort of wrong, felt right.

Lost Day

I woke early, feeling exhausted, and not a proper sort of sleepy exhausted, but an odd sort of depleted exhausted, like all the energy had drained out of me somehow and I could hardly move. I could hear birds, very very loud birds, wood pigeon calls burning the insides of my ears.

I knew I had to be somewhere today. I knew also that getting there would be difficult. I looked at the schedule for the rest of the week, which I had photographed and saved on my phone. I tried to work out what I might be able to skip without causing too much inconvenience or annoyance. My head wouldn’t think very well, so I started to try to type into my phone:

If this were real life and I’m at sensory levels of now and tiredness. Would be schedule looking.

This was how the language emerged from my finger. I knew it was wrong and that it needed editing. And I also know that when WRITTEN language becomes difficult and starts to go wrong in that way, that I’m heading into shutdown. This is something I’m starting to learn, now that I’m actually observing myself with some knowledge, rather than just declaring myself “ill” or declaring that “my head went wrong” as I have done in the past.

I attempted to speak. There was nothing. No surprise there. If the written words are starting to go wrong then the spoken ones are almost certainly non-existent.

It was still early. I still had to get a message to the outside world that I wasn’t going to be where I was expected to be. The best I could do was to message my husband a few words and hope he could interpret what I was trying to say in order to convey some sort of message to those who needed to know that I wouldn’t be appearing for rehearsals this morning. He received the following messages:

Fail now. Is. Words. Morning. Not.

Now. Schubert. Prob. Can’t.

Tell.

Write hard. Speak not. Food not. Later.

And because he has long experience of such communications, he was perfectly able to send a message saying that I wasn’t able to get to the Schubert rehearsal and had asked him to pass on the message and that I didn’t need food and wouldn’t be able to communicate for a while.

At some point during the morning someone brought me a cup of tea and left it outside my tent. I was unable to respond, unable to move from where I was curled up under the duvet, unable to do anything at all for a while. This is all absolutely normal for me at such times, which have been happening since my early childhood. My mother observed the behaviour, still remembers it well, going right back into my early childhood, and even had a word for it, zonking, which I mentioned in Losing The Words.

Having successfully conveyed a message of sorts to the outside world, my brain then simply closed off. I slept a bit. I lay there staring at the side of the tent, a bit of plain fabric being as much visual input as I could take. I didn’t move. I couldn’t move. I don’t usually remember much from these times, just a feeling of being utterly drained, no energy at all, and something like a deep depression, not being able to form thoughts properly, no ability to translate things into words, nothing. My head is simply closed for business and my body follows it. There is nothing to do at that point except wait – it’s like some sort of reset is required before my overstimulated and exhausted brain will function properly again. I don’t respond, I don’t communicate, I just lie there and breathe, nothing more.

After a few hours I regained the ability to type and to form words and typed some of the thoughts that had by then started to emerge from my head into the notes app on my phone. Having established that I could once again produce proper typed sentences, I was then able to contact the outside world by facebook without my husband having to make the sentence structure for me. It was lunchtime. I was aware that I hadn’t eaten or drunk anything all morning (and couldn’t have – something else my mother had observed about zonking was that food was an absolute no during those times, and when I have attempted to eat or to keep functioning I have simply ended up physically sick and it’s been assumed I had some sort of bug or similar).

Somebody brought food and left it outside my tent. I was unable to thank them except online, but was able to eat by mid-afternoon, and was, it seemed, by this stage, quite hungry – even though I didn’t feel any sort of hungry, once I started to eat it was obvious that I was.

It took another couple of hours for the shutdown to be properly over and a further hour for spoken words to fully return. Although I can’t always tell when I’m going IN to shutdown, or that that’s what it is (though I am getting better at recognizing it as I’m learning), it’s really obvious when I’m emerging because I start to stim again, I start to rock and to move and get back to what for me is “normal”, a state of dynamic equilibrium as I like to think of it. For me, being still either means I am masking furiously and working hard to stay still, or I am ill and in shutdown, or I am asleep, or, occasionally, that I am relaxed under a weighted blanket or completely immersed in something or similar. The rest of the time I move, and that movement restarting is always a good sign – it’s the feeling that you didn’t know something was wrong until it was solved, and the minute it’s solved it was obvious how wrong it was before!

My sensory system remained on high alert for the rest of the day – I managed to go and sit in the audience to hear some of my friends singing and playing music, but used earplugs against the applause and was deeply grateful to a friend who asked others to move away from me to give me some space during the performance.

By mid-evening I was able to drive home, where my husband had “the food” (whatever I’m currently eating we call “the food” – I have cyclic obsessions with food where I eat the same thing every day for months, and always have done) ready and waiting for me, and I spent the evening doing all the familiar routines and being with the animals and recharging properly ready for the next day.

But what should have been a day participating was basically lost to a massive shutdown, and there was nothing I could do about it. I would have liked to have been in the rehearsals that morning. I would have liked to go to tea that day. I would have liked to join in the celebratory feasting and dancing (although I knew that the feasting would have been a non-starter anyway and I’d have been eating alone somewhere quiet), but I couldn’t.

But at least I know what causes these times now, and I have a word for them, shutdown, which makes sense to me and enables me to understand what’s going on. At least I have people who are willing to understand it too and to bring me food and so on and to help me out when it happens. And I know that I’m not getting some sort of illness (as has been suspected on many occasions in the past) and that I will feel better in a few hours’ time – I just need to wait, to be on my own, and to have as little input into my system as possible.

Last year, when the same thing happened, all I knew was that I felt inexplicably awful and couldn’t even tell anyone how or why. I spent a night silently crying in my tent in the dark, without food or help, with nobody even knowing where I was because I’d lost all ability to communicate and wasn’t even able to type a message to my husband. And short of “something mental health related or maybe a virus”, I had no idea why I was like that.

This year wasn’t ideal. It’s not really how I want to live my life, missing out on good times, having to skip rehearsals, having to sit on my own because my system can’t cope with much social interaction or noise, and so on. But it is better than the distress of previous years, than the anguish of desperately trying to function, trying to make things work, having to call in with some “unknown illness”, making myself worse by continuing to try to speak or function as I “should”.

I don’t like having to live this “half life”, which is what it feels like. But knowing why these things happen means I’m much less self-blaming, much kinder to myself, gentler to myself. And simply allowing the inevitable shutdown to run its course and not trying to push myself out of it means that I actually recover more quickly and am generally healthier as a result. Maybe once I’m more fully recovered from the recent burnout I’ll be able to do a bit more – I do hope so.

It does still all feel very much like a work in progress still. I have my answer as to why these things happen to me, but I now have to work out the best way to live, which I haven’t quite managed yet.

Hypothesis Formation

Yesterday, the following status appeared in my facebook memories from one year ago:

Did all that just happen? Now to try and remember what I was doing 3 weeks ago. And to consider what to do with the new information concerning how my head reacts to stuff.

At that point I didn’t mention on my facebook wall that it had been suggested by several people that I might be autistic. I just vaguely alluded to “new information” about “my head”. As far as I was concerned, the notion of me being autistic seemed extremely strange, extremely unnerving, and, as far as I knew at that point, extremely “not me”!!!

Oh, how I laugh at that last bit now!!!!!

I certainly wasn’t going to start chattering on about it on facebook at that time, and, as far as I can remember, I was still really regarding the whole “me being autistic” thing as one of those slightly wild ideas that folk have and that would eventually fall by the wayside as being just another one of those theories. I didn’t want to post something up on my wall, be shouted down by a whole bunch of people, and then unfriended by a whole bunch more. I wasn’t confident enough of anything at that time to mention the idea to more than my husband and one or two friends.

However, the fact that several people had, independently, suggested that I might be autistic was enough to make me take the idea seriously enough to do some research and see if I might find out what was at the root of their suggestions.

I did what anyone brought up with a toe in the world of science would do. I formed a hypothesis, which I called the “autism hypothesis” (i.e. proving the hypothesis would mean that I had gathered enough evidence to confirm that I was autistic, and disproving would mean that there was insufficient evidence and I wasn’t autistic and I could ditch the whole idea and just go and have a drink and forget about it).

So then I had to investigate the hypothesis. Gather evidence. Find out what this whole “autism thing” was actually about!

A friend of mine had sent a copy of Liane Holliday Willey’s Pretending to be Normal to me and I’d read it with a certain amount of bemusement – apparently it was something to do with autism, but it just seemed like a fairly ordinary account of someone’s life as far as I could tell. It was enough to convince me to investigate further, but I needed more INFORMATION! Actual information, not a life story.

And so I did the modern day equivalent of what my father told me to do when I was young. Back in my childhood if anybody wanted to know anything the answer was always to “get a book from the library” and to find out that way.

I have not been into a lending library for many many years (I think the last time I went into one was for a job interview and I was unsuccessful). And I don’t believe a lending library would have been much help to me.

So I tried Google, which was also no help because it presented me with page after page of search results about small children and parenting and so on. The world of adult autistic blogs was still inaccessible to me as I didn’t know what I was looking for, or that it existed, or how to find it. And it certainly wouldn’t have occurred to me at that stage that there were groups for autistic people on facebook or hashtags on twitter or anything of that sort.

So I went back to what I knew, which was books, and typed “adult autistic” into the Amazon search bar. And discovered a book with a promising title: Cynthia Kim’s I Think I Might Be Autistic (or as it subsequently became known in our household “The book with the pencils in the wrong order”).

And on the 23rd August 2016 I downloaded the sample from the start of the book onto the Kindle app on my iPad and had a look at it.

It pleased me from the start. It provided what I wanted – information, an outline of the diagnostic criteria for autism, and the start of a list of questions that was evidently continued beyond the free sample that I had. This book was speaking my language – it had facts and lists and promised to provide me with exactly what I’d been looking for to start to work on proving or disproving the newly-formed hypothesis.

My Amazon records show that I ordered the paperback copy the same day. And that was the day on which Time Stood Still for me. The 2016 calendar STILL shows 23rd August as the date, and maybe it always will. In Time Stood Still I referred to some sort of mental breakdown, which I now know to be a huge episode of autistic burnout.kn

It was to be months before I started to emerge from that burnout (and I still haven’t, fully) and from that moment almost my entire life was taken up with investigating the newly-formed hypothesis and, later, with trying to obtain a formal diagnosis.

I read the criteria from the sample of the book on my iPad over and over again, and waited for the paperback to arrive in our mailbox so I could try to work out what the diagnostic criteria actually meant, and whether any of them had any relevance to me.

With all that’s happened in the last 12 months, and with the knowledge I now have, it seems utterly extraordinary that it was only a year ago that I started seriously to investigate the possibility that I might be autistic.

And I certainly wasn’t telling anyone who didn’t need to know about it at that stage!

If anyone had told me I’d be blogging about it publicly within 4 months I’d have thought they’d gone mad!

Leaky Head

I have been inattentive to this blog recently. My head has been so full that processing thoughts into words has not always happened. I have also been back to the place mentioned in The Discovery and, more recently, in Going Back, Doing My Best, and Packing.

I am still analysing the experience of returning. I am still recovering from being with so many people for so much time. My husband went away for a couple of nights an hour after my return and I have now not seen another human or spoken a word for over 40 hours and I am starting to regain a little equilibrium.

I am also trying to work out what any of it is for. And I spent a long time yesterday “persuading myself That I even want to [live]”, which is still not a foregone conclusion for me. In the end, I gave up trying to work out why I do anything at all, and simply reminded myself of Scott Jurek’s words: “Sometimes you just do things!” These words have served me well on many occasions over the last few years.

Better analysis will have to wait for a while. Pouring so much energy into things outside my normal routine has left me somewhat depleted and also very behind with blogging and “desk work”. There is much to catch up on, and it will take time. I am having to take things very very gently.

However, the last day I was away, the 20th August, was a significant anniversary for me – exactly six months since my formal diagnosis. And, at four in the morning, sitting in a tent in a field, I typed the words below into my phone. Just something to try to mark the occasion somehow.

They’re very unformed thoughts. I have not analysed them, nor edited them (beyond dealing with a couple of autocorrect fails), and my head’s not really in a place for discussing some of them yet. I suspect I’m also repeating things I’ve said before. Maybe this is the way my brain is doing the processing, still trying to work out what has happened in the last year and where to proceed from here.

Please don’t challenge me on the thoughts below. I’m not up to being challenged on them. They are my truth from where I am at the moment. I do not want positivity. I do not want reassurance. Those things are uncomfortable to me right now.

My head needs space to process the thoughts and I need to challenge any that might need challenging by myself, in my own time. I do not currently have the strength to debate them with others. I merely present them to you as they are.

My head is full of anniversaries.
The end of this summer’s music
Reminding me of how things ended
Last summer…

Then
I was just at the start
Of exploring
The “autism hypothesis”
As I called it.

Me? Autistic?
No.
I did not “suspect”
I had not “wondered for a while”
It hadn’t occurred to me
At all.

TBH I hardly even knew what autism was.
I sure as hell knew nothing about
Sensory issues
Executive functioning
Autistic inertia
Social imagination
Burnout
Masking
Stimming
And so on.

Except that I did.
I knew all these things
Really really well
Because they had been part of
My normal
All my life.

I just assumed the world was
The same
For everybody.
And that life was basically
A competition
To see who could cope
And be tough
And behave “properly”
Like they tried to teach me.

I knew I was weak
Because I couldn’t tolerate it well
And got so mentally ill
That I wished to be dead
Most days of my life
For as long
As I could remember.
I assumed this was normal.
Most folk wake up
Wishing they hadn’t,
Don’t they?

I knew I was bad
Because I was still naughty
Even when I was trying to be good.
And I was still lazy
Even when I was working my hardest.

And then I discovered I was not
“Normal”
After all.
And please don’t think
That telling me I AM normal
Is in any way helpful
Because it is not comforting
Nor reassuring.
It is invalidating,
Gaslighting.
And upsetting.

There is
A weird feeling of discovering
That most other people
Perceive the world
Differently.

Must be odd for them!

I wonder what it’s like.

But I’ll never know.

My head is full of anniversaries
The date on my calendar app
Reminding me of how things ended
Exactly six months ago…

Then
I was at the end of exploring
The “autism hypothesis”
Because it ceased to be a hypothesis
And became a formal diagnosis.

Six months of learning about
Autism
And
Sensory issues
Executive functioning
Autistic inertia
Social imagination
Burnout
Masking
Stimming
And so on.

And discovering that my normal life
Wasn’t so normal
After all.

And that most other people
Weren’t being tough
In the ways I thought they were.
The assessor was clear on that.
And absolutely totally clear
That I fulfilled all the diagnostic criteria
Even things I hadn’t discovered:
My gestures and expressions
Limited and atypical.
Things that should have been
Learned intuitively
I had instead
Learned cognitively.

My head is full of anniversaries
And I think I should be
Writing something more
Organised?
But life has been sapping my energy
And my mind still needs
More processing time.

The thoughts are just there
Undefined
Randomly swirling.
Logical arguments not yet formed

But the anniversaries are there.
Six months since diagnosis.
Half a year.
That should be significant?
Maybe?
Perhaps it is and that’s why I’m even writing this.
It feels significant.
Six months since liberation.
Six months since it became OK
To stop trying to be “normal”
To give up the old life
(Though I’m yet to work out
How to proceed from here)
To recognise how disabled I really am
And how much care I need
Though, perversely, I’d rather be independent.

Six months is a long time
A lot has changed.
Six months is a short time
There is still a long way to go.

I am still learning.
There is so much to learn.
I’m still new to this autism malarkey.
Both new to the whole idea of it
And the theories
And debates
And arguments.
And to how and where I fit
Into the whole neurodiversity thing.
Confusing complexities of language.
The triggering effects of so much exposure
To children and childhood and parenting discussion
An area of life I had cut myself away from because it is so alien and painful.

And while I have lived for decades with my “normal”
Redefining myself as autistic is odd.
I was colourful, eccentric, weird, something special and different.

Now I discover I was just a common or garden autistic all along.

I feel much less unique.
More bog standard.
But I also know now I’m not normal.

Paradox.
I’m odder and less odd than I thought
Simultaneously.

And I have to learn to live
Practically.
And keep persuading myself
That I even want to.

Now is not really the time
After a week of memories
Almost no sleep
Meltdown
Shutdown
Self-injury
Dissociation
People
Music
Trying to cope.

But today is the date
So I have allowed
Unformed thoughts
To escape from my head.

My head is full of anniversaries.
So full
That some thoughts
About them
Have leaked
Out of my finger
Onto your screen.

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.