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.

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Dark Thoughts

This post should, I think, be one that carries additional content warnings beyond those on the home page of this blog. As you might guess from the title, material that some might find triggering or distressing might well be included here, so please protect yourself if you’re vulnerable and only proceed if you feel able to cope or have safety strategies in place. I should also add that I’m not in any immediate danger, despite having regular thoughts about my own place on this planet, and I have my own strategies sorted for the time being.

I find myself in a slightly odd situation when writing about and publishing posts about the darker side of my mind. When I started this blog one of the things I wanted to do was to be as honest as possible about as much as I could as possible, partly because that is just the way I am, partly because one of my hopes is that by discussing the more difficult topics (such as suicidal ideation) I will, in some tiny way, contribute to destigmatising them, and partly because there might be others who, like me, will read that there is someone else out there experiencing these thoughts and feeling and will feel comforted by the knowledge that they are not alone (even though this usually raises the rather odd situation of “I’m glad it’s not just me,” hastily followed by “I don’t mean that I’m really glad you feel horrible and want to end your life, just that I’m reassured that I’m not alone”).

However, when I am at my worst, one of the things I struggle to do is write about it. And, even if I do manage to type any words (usually into my phone while curled up under a blanket), the chances of my having enough functionality actually to publish them on this blog are pretty much nil. So I’m always playing a sort of “catch up” with the dark thoughts!

I’ve had a pretty rough week this week. Regular readers of this blog will know that I was away from home and spent a LOT of time surrounded by people during the preceding week. I didn’t know whether I’d even manage to be there, and it was only because of quite a lot of people giving me quite a lot of support that I was able to manage at all. However, even WITH that huge level of support and acceptance, it took every ounce of energy I possessed just to cope with an absolute minimum level of activity, so this week I have, unsurprisingly, been utterly wrecked.

I’ve done a lot of thinking about the amount of effort put in, both by me and by others, and have been considering hard whether it’s worth pursuing some of the more difficult things that I keep trying to pursue. I’m clearly disabled enough that I need care and adaptions just to enable me to participate in many things. I haven’t yet managed to process all my thoughts about this, and certainly if you’d asked me on Monday, I’d have declared that I was never leaving the flat again, ever, and that there really was no point continuing with life. I managed to post a couple of blog posts in the better moments, but that was about it.

However, time and solitude have meant that (I think) the worst is now over, and I’m gently starting to resume life, and to start to think more sensibly about my future exploits in the outside world. But, looking back to Monday, I thought it was important at this stage to acknowledge that this process of autistic discovery is not all wonderful relief. The wonderful moments such as those described in The Magic Spot and Liberation! are part of the experience, yes, but there is also a bleaker side of an autistic discovery, particularly, perhaps, for those of us who have a lot of anger and sadness at the way our lives have turned out. I could, if I wanted, make this blog all about the wonderful bits, a great celebration of beautiful stimming and hand-flappingly joyous discoveries and solved mysteries and so on, but it would feel like lying, so I won’t.

The darkness of this week has in no way been comparable to that described in The Aftermath, although I have, once more, had to work seriously hard to persuade myself that it is worth staying alive for the time being. It’s all very well accepting myself as an “out and proud” autistic at home, but once I have to interact with people in the outside world I have to work out exactly how I do that – there’s a blog post fermenting in my head about it – and that causes me to ask a LOT of questions about my value to the world and my purpose in the world and so on. The immediate answers delivered by my head are not all that encouraging, and I have to do a lot of work to debate them.

And, it seems, I am not alone. This morning somebody shared an article on facebook. I haven’t checked its veracity so I am merely reporting something shared by a mainstream media outlet (I don’t have the spoons to go back to the primary source right now), but the report talked of “investigating concerns about suicide rates among autistic people” and “research shows that two thirds of adults newly diagnosed with the condition had contemplated suicide.” If this is the case, then I’m certainly part of that two thirds.

Research results such as these are no surprise to me. In fact, from my own personal experience, I’m amazed it’s not higher. I have been contemplating suicide for as long as I’ve known what suicide was. I sort of assumed that most people did, but that, like me, they just didn’t talk about it. My feelings were borne out last autumn when I read Philip Wylie’s Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) in which he described a further suicide attempt after his own diagnosis at 51.

Having such thoughts and memories does, for me, prompt me to review my “progress” as far as my own process of discovery and diagnosis is concerned. After so long in the mental health system I’m also very attuned to mood monitoring, and I’m also continually trying to assess my state of recovery from burnout in order to try to work out what level of functionality I might eventually hope to achieve and what kind of goals and plans I might make for the future (probably my strongest motivators to keep living are to achieve goals, to learn “things”, and to “find out what happens next”)!

I wrote the words below back in February, three days before I received my diagnosis. At the time I considered them too dark to post, and, since I was diagnosed just days later, and then life changed again a few days after that, they were never published. I feel there’s sufficient distance to publish them now, and I’m very aware that there are others still going through the diagnostic procedure who might relate to some of them. Also, however dark life has been this week (and it has been quite dark), it hasn’t reached the stage it was at back then.

If they don’t diagnose me
I can’t see the point of going on living.

Because I hate my life so fucking much.

I have always hated life.
I don’t know why people care about it so much.

I do not belong in this vile place.

But I was told to behave.
I was told to smile.
I was told to work hard and be good.

So I did.

But everything still turned to shit.

And I smiled publicly through the shit.

And unlike the kids who got spotted and got shrinks and stuff
I used those fucking accursed bastard brains to compensate.
And destroyed my mental health in the process.
The smiles hiding a ticking time bomb
Of mental illness and desire to be dead.

They thought I was happy because I passed exams.
But the exams were the retreat from the misery of people.

And later I drank myself oblivious when alone.
And cried.
And tried to end this hell.

And still nobody has believed me

45 years.

Still fighting.
Still not knowing who I am.
Still being told that maybe I have brain injury.

Why why why.

How much fucking longer?

I’ve written quite a lot more dark words about dark thoughts this week too, more about how angry and frustrated I am at my inability to function in the world, about how long all this took to discover, and about how much I struggle with some aspects of life. I’ve also had cause over the last week or to consider the vast gulf between some of my abilities and some of my disabilities, and how that gulf makes life so very complicated and unpredictable. I’m still working on trying to formulate those thoughts into something coherent though, so I’ll stop for now as this post is already quite long enough and my writing ability is almost exhausted for now – I can feel the sentence structure is no longer flowing and easy and that I’m having to use large amounts of brain power to translate my thoughts into readable words, so it’s time to stop!

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!

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!

An Event

I sit at the back, in the corner,
Quietly rolling the ball on my fidget cube
While my leg moves, involuntarily,
Hardly noticed by me.
Maybe I rock?
I can’t remember.
Since I stopped actively preventing what feels so natural
I am not always conscious of it,
Just like I do not always observe my breathing.

The parquet floor reminds me of years
Spent in public buildings.
I adore this pattern and its pleasing geometry.
It calms me.

They read poems, the poets, proper poets.
The theme of the evening – mental health.
Bipolar disorder all over the place.
I almost wonder if anyone in the room has not experienced
That wild fluctuations in mood and behaviour
That so many of us do.

My own system is on high alert.
It has been for hours.
I nearly didn’t make it.
Mid afternoon I felt so anxious, so unable to cope,
That I thought my entire being would shatter into a million pieces from the strain…
Like the glass panel in our sitting room did, ending up like crazy paving.
But 15 minutes beating my head against a cushion
Helped.

I sit, my legs now folded up beneath me, playing with my hair.
Machinery from the coffee shop behind me a persistent aural backdrop.
Traffic noise, horns, bicycle bells, the sound of footsteps in the street below.
British history books in my line of vision.

And words. Surrounded by words
(Not just the ones in the books,
But the loud ones, in the air).
I know I have to listen and make pictures from these words
Because there are no subtitles at a live poetry reading.
Maybe I should have acquired books of the poems at the start.
Never thought of that.

They speak well.
This is all good stuff. Mental health awareness.
Yes yes yes. It is. This is right.
So much of my own experience described.
These people know. They talk sense.
And it’s like they have been inside my crumbling head…
They have taken the same medications, felt those same effects.
I relate to what is said, even though I cannot say.
I would contribute, but my words are drying up.
There is open mic
(But no actual mic – so open air?
But we are indoors. Oh confusion!).
I stay silent. I am not a poet.
I leave the poeting to the poets
And the writing to the writers.
I am a foreigner in this world.

Afterwards, people chat.
I feel it, the heat, the familiar nearly nausea, as the sound of talking starts to overload my system.
The beads of sweat start to trickle down my back, just like they do every time I go shopping.
I retreat round the corner
And focus on the Russian history books.
Ivan the Terrible, Catherine the Great, Peter the Great.
Romanovs, Rasputin.
Trotsky, Lenin, Stalin.
Gorbachev, Putin, Litvinenko.
I am bizarrely fascinated by Russia
So this is a good place to be.
I covet a thick volume on Rasputin.

My husband finds where I am hidden.
I hug the poets, friends of mine, known online for years, some only just met in person.
All I can tell them is “Yes, all the things, yes…”
Or something like that.
I hope they understood what I meant.

As we get into the car I speculate that folk didn’t seem to mind me being there.
He makes some comment about me being the person in the dark glasses.
I had totally forgotten I was even wearing them.
I’m so used to that part now!

By the time we get home making words is difficult.
Exhaustion engulfs me.

But I did it.
Gradually working out
How to be in the world again.

But in this new life I am going out there as myself,
No longer pretending to be someone else. The act is gone.
It is all new.

Takes time
To adjust.

An Achievement

47-2017-01-22-11-23-13This morning I went running. For the first time this year. The first time since early November. I only did 2 kilometres, at a pace of 7:15 per kilometre. Neither long nor fast. Under normal circumstances I’d hardly consider such a run worth putting my shoes on for – I’m an ultrarunner and I like to be out there for a long time. My usual idea of a “short run” is anything up to half marathon distance or so. My usual idea of a “long run” is one that takes a whole day and involves backpacks and nutrition and so on – maybe the “autistic intertia” that makes starting and stopping activities so difficult is actually an asset in ultrarunning?

However, during the last few months I’ve been so burnt out, so stressed, so frightened to leave the flat most of the time, that running simply hasn’t happened. Just the effort of putting kit on has been completely beyond me, and I’ve looked, slightly sadly, from time to time, at my pile of much-loved running shoes in the hallway, desperately hoping that I’ll be well enough to put them on again one day.

Running is one of the things that might, in autistic terms, be described as one of my “special interests”. I’ll discuss the whole concept of “obsessions”, “special interests” or whatever they’re called at some point – I tend just to think of mine as things I like, but I do recognize that when I like something enough to bother with it at all, I really do bother with it. The first day I put a pair of running shoes on and moved slightly faster than walking pace for one painful minute, I began a journey that would lead me to a 100 kilometre ultramarathon just 9 months later. I read the magazines, I’m obsessed with the kit, the nutrition, and so on. I have a steadily growing pile of books about running, and I love following online trackers of races and feats of endurance running whenever they’re available.

This last few months though, I’ve had to sit and watch as others actually did the running. I simply couldn’t manage it. Over the autumn I pulled out of two halves and four marathons, all of which I really wanted to do. I’ve realised that races are going to need some strategies to cope with – it has become obvious that when other runners chat to me it severely impairs my running performance, even people cheering me on uses language-processing power that means I have less energy available for the actual running. I absolutely hate having my name on a race vest – it freaks me out when random people suddenly shout my name – it is not encouraging for me, it is spooky and weird.

I have also always resisted joining a running club. People tell me the camaraderie is wonderful, and that the beers in the pub afterwards are lovely. But, to be honest, I’d rather give up running than have to join a club – I want to do running for running’s sake and one of the reasons it works for me as a way of getting fit is that I can do the actual running completely on my own. I like the quiet, the repetitive action of one foot in front of the other, over and over and over again, the same thing, lost in my own world. The minute someone talks to me that spell is broken and I am dragged back into a world where I have to work out other people and what they want and why they have spoken to me and what they are hoping to get out of this conversation. I’ve even been asked during races “What do you do?” WHY? Why, when I’m 20 miles into a marathon, would a total stranger ask me a difficult and complicated question that would take nearly all my resources to answer if I was sitting down and had a lot of breath and time to think about it? I don’t understand.

I do all my training alone. Even when my husband and I train “together” what we actually do is get changed into kit, tell each other approximately where we’re going to go and how far and what time we expect to be back, and then arrange to meet back at the car or wherever. The only times we have actually run together (once during a race that was going wrong when he was trying to protect me from people talking to me, and occasionally for safety reasons in rough conditions) we do not chat. We just run. That’s the beauty of running for me – it’s a solitary sport, something I control myself, which rarely involves other people or communication, a far cry from the bullying and dread that is my abiding memory of having to play team sports at school. I used to enjoy swimming until the sensory overload and proximity to other people in swimming pools made it unbearable.

But I enjoy races. I like to see what’s going on. I love looking at other people’s shoes and kit and so on, I like to see the ways races are organised, I like the welcoming sight of the next aid station and the excitement of seeing what goodies they might have available (sitting eating porridge and lemon tarts and drinking soup after nearly 24 hours out on a trail, cold and wet with a busted leg, is a special and wonderful thing). I like having a goal to aim for, a medal to put round my neck saying “I achieved something that I never thought I would”, and I like to make training plans and work out which days I’m going to devote to a long run and which foods I’m going to try to carry and pushing my body to its absolute limit.

I could give up races and confine myself to training or “virtual” races, but that isn’t my aim. I’m going to have to get fitter in order to compensate for the people – where many folk find the race “atmosphere” enhances their performance, it impairs mine, so I’m going to have to train harder. I have a marathon booked for the start of April (along with a very expensive hotel room). I’m now wondering whether I might actually be able to do it. I certainly haven’t given up. I was also planning my first 100 mile race in May, which probably looks unlikely at this stage – although there is an option to drop down to the 24 hour challenge, which might be a possibility. I’m keeping my options open for the moment.

One thing is certain. My obsession with running has not abated during my enforced rest period. In fact, I’ve become somewhat interested in historical sprinting while sitting in front of the TV with the DVD of Chariots of Fire on repeat for the last month. I’m now reading avidly almost everything I can lay my eyes on about Harold Abrahams, Eric Liddell, and the 1924 Paris Olympics, finding out the real stories behind the film, my head filling with little snippets of knowledge, which I won’t start listing here because I haven’t finished the process yet and it would already be more than a blog post’s worth!

The only books I have read in the last few months that haven’t been about autism (or science/maths text books for “work” type reasons) have been running books – not only those about historical figures, but contemporary tales of marathons and trail running. I’ve struggled to read much at all because my concentration is so poor, but, aside from the autism section of my personal library, running books are the others that have made it to the top of the pile.

But this morning I actually managed to run again. I woke up feeling as though I could, and having spent several days thinking about it, I decided to see whether I could actually do it. The hardest parts were, as they usually are, getting out of the flat in the first place, and then returning to the flat at the end. We share a communal staircase with everyone in the block, and we both live in utter terror of meeting a neighbour on the stairs and having to chat about something unexpected. Going out is actually better than getting home because we can hear people in the corridor outside so we simply hide behind the front door and wait for them to go, but the possibility of getting into the block and being nearly home but then bumping into someone is an anxiety we live with every time we get home from anywhere – the relief and ability to breathe properly again when we finally close and lock the door behind us is massive.

The run itself was lovely. I was pleasantly surprised that I haven’t lost as much fitness as I might have imagined – maybe up to two hours a day rocking hard on the sofa and bashing myself violently against a cushion has been good cross training? One of the things that has also been better about this episode of burnout / mental illness than during previous episodes is that I went into it very physically fit. Previously I’ve not only been mentally very low, but I’ve also been very overweight (I used to be a person who struggled to climb stairs, even lifting my legs with my arms to go up steps at one stage) and extremely unfit and incapable of walking any distance at all. The physical fitness has helped no end – running has turned out to be a very good “special interest” to have acquired.

And this morning I finally started to increase my fitness again, just a tiny bit. I can’t imagine this will be a totally smooth ascent – I’m not pushing anything hard at the moment because I know that the only real cures for burnout are solitude and rest, but now I’ve been out once, remembered I can do it, and been through the familiar routine of putting kit on and so on, maybe it’ll be a little bit easier next time. And although I’ll never be a sprinter at the 1924 Olympics, I might manage to get good enough to run again in one of my favourite marathons in one of my favourite cities in April.

A very special friend of mine in a distant and beautiful part of the world wrote one of the books I am currently reading. It is called “Run Gently Out There”.

That is exactly what I hope to keep doing.