Also Being Autistic

Bizarrely, the point made in the last post, that I find it hard to imagine how life could be good again when it’s bad and hard to imagine how it could be bad again when it’s good, was proven when I finally clicked publish on that post and immediately felt a weird sense of dishonesty.

I wrote the post a few nights ago, in one of the good phases, put it onto the blog site in draft, and numbered it to be posted next. But by the time publishing time came, I was struggling again, and it felt a little weird to post something so unrepresentative of my current state.

I also suddenly worried that I’d equated lack of social imagination with lack of empathy. If I did, then I didn’t mean to – I’m still trying to figure all this out and this blog is a learning and analysing experience for me as well as something for others to read if they wish to. I still need to find proper words to describe all these things better. I still need to organise and structure my thoughts better, and I’d like very much to be able to explain all these terms properly.

This constant back and forth, constant switching between feeling wonderfully neurodivergent and fabulous and relieved to have discovered who I really am, and feeling frustrated at how limited my life is and how difficult I find things, is still characterising my life quite strongly at the moment. I described some of the effects this has on me in Oscillating, and it continues to be true. I suspect it might continue to be true for some time to come.

The warm fuzzy feelings in Being Autistic are real. I AM happy to have discovered my neurology and to have solved so many mysteries from my life. I have no issues with people thinking I’m strange, or with stimming in public, or with stigma from anyone immediately around me (I realise this makes me massively privileged – when my friends see me flapping my hands or rocking back and forth they don’t tell me to stop, they just check with me that it isn’t an indication that I’m in any sort of distress). In many ways it’s all good. Lovely stuff – stick on the dark glasses and ear defenders, take my phone everywhere in case my speech fails, carry on with life. Proud autistic stuff, rainbow infinity symbols, stim toys, clothes without labels, and not a worry about what society thinks. Even before I was a nonbinary autistic I was an AFAB who hadn’t worn make-up or a bra for over 20 years and was happy existing in socks and sandals without caring what others thought. I’ve been miles away from many societal “norms” for decades, and I have enough confidence not to worry about that most of the time. If people like me and want to be friends with me on my terms, great, if they don’t, then no big deal. Now I have a reason to explain just why I fail to comprehend society’s codes I feel even more justified in being myself and not worrying about it. I am fully “out” as autistic to anyone who cares to know (and probably people who don’t too) and absolutely happy with that (to be honest, anyone who knows anything about autism can figure it out in about a minute anyway if they meet me – I do present as stereotypically autistic in many ways and even if I try really hard to mask, at the moment I’ll last only about an hour before I start to collapse or get sick). Additionally, I can take the pressure off myself to be “strong” so in many ways it’s even better than before – I can ditch the self-blame, I can relax, I can just enjoy being me.

However, there is a flip side. I am still coming to terms with the fact that I am not the Strong Woman of my mask. My day to day existence is, for the most part, relatively low quality. Most days I spend between 14 and 24 hours on my own in a grubby, overcrowded, dark flat, trying to recover from the days and times when I CAN get out and do things. I look at my former colleagues from college days, many of whom have houses, children, and jobs, and I have none of those things. Certainly my inability to sustain employment is down to me being autistic (and, maybe even more so to remaining undiagnosed for 45 years – I never asked for adaptions at work because I didn’t know I needed them and I lost every career and job I ever had), and my consequent large debts and relatively poor living conditions are a result of that. I read memes that tell me if I want something I have to work for it. I have done nothing less than work as hard as I possibly can all my life and the things I wanted didn’t come – those memes sound like cruel lies to me. I spent a pleasant evening socialising and drinking with friends a couple of weeks ago – the resulting overload caused an entire night of meltdowns and panic attacks and suicidal thoughts. Everyone else went to bed and woke up with a slight hangover. Every so often I ask “Why me?” and then I feel guilty because I am betraying the neurodivergence movement and I become frightened of those autistics who tell me that autism is not a disability, just a difference, but I am so very disabled by it so very often – no work, no money, some days I am a 46-year-old who cannot even get myself a hot drink or work out how to get enough food to sustain me or even manage to get dressed properly. And not all of this is “society’s fault”, it is just the way that life is and is often a result of simple practicalities. I am actually surrounded by non-autistic people who are doing their absolute damndest to understand me and to help me and to compensate at every turn for my disabilities – they are brilliant and loving and patient and I am very very lucky with them, but I am still struggling. And at those times I wish I was “normal” (yes, yes, yes, I know the old cliché that there “is no normal” etc etc, which, to be honest, to those of us who are so far up one end of the bell curve that we cannot even see the middle of it, sounds a bit trite), at those times I wish I could go to work for a week (even part-time) and go down the pub for a few hours on Friday night and enjoy a weekend with the family, which I can’t. I wish my gender was one that was recognised and understood by everyone (that is society’s fault), but it isn’t. That is the sort of “normal” I wish for…

I could go on. There is still much to explore. There are two sides to this, the dark side, where I just want all this to go away and to live a regular life (and, yes, I use the word “regular” advisedly, as I do the word “normal”), and the wonderful quirky side where I can finally be me and enjoy it and live a life that is right for me. Practicalities constantly intrude on me “being myself” because I have to eat and drink to stay well, I have to find enough money to survive, and unless I never go anywhere or do anything ever again I have to interact with other human beings in a way that often makes me very uncomfortable. To an extent, there is a part of me that needs some interaction too – less than most people I suspect, but not none at all.

I suspect these thoughts will continue for some time. I am still new to all this, only just over a year since I discovered I was autistic. As far as being knowingly autistic is concerned I’m only just learning to walk, at age 46, after over 4 decades of trying to be something else and failing at it. I’m also still very burnt out and still trying to find help, still waiting for referrals to services, still trying to discover if there is any medication of any description that might help (I can’t take many of the things that might help because of co-occurring conditions). Perhaps things will improve as time goes on – it’s still really really early days for all this stuff.

It’s also a big switch, a total change in life parameters, and I suspect I’m still fucking things up quite a lot. Still not explaining myself right – remember, I’m also very alexithymic, which doesn’t help. I’m still working it all out. It’s all still evolving, much like this entire post evolved out of a simple feeling that I should add a short explanation about the previous blog post.

Strange times.

NOTE: Since I wrote the words above, I feel different again. At the time I intended to post Being Autistic, I was in such poor shape that I couldn’t even turn the computer on to press publish and I had to do it the next day. I’m actually in better shape again now, happier, more relaxed. That’s how quickly things keep shifting, how fast the oscillations sometimes are. But I won’t write yet another post about that at the moment because this cycle could go on for a very long time!

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!

Eight Weeks On

So, eight weeks on from my diagnosis, I’m once again pausing to observe the passage of that time, and, understandably, reflecting on how life has progressed since I sat in the room at the end of a five-hour interview and testing session and was told that I clearly fulfilled the criteria for a diagnosis of autism spectrum disorder.

Eight weeks ago today I was relieved and exhausted in almost equal measure, having been officially told the news that explained why my life had been so incredibly difficult and I had failed, consistently, to live up to the expectations and demands that that so many people (including myself) had for me. I had reached the end of the process of assessment, and the end of the “old life” and had, finally, got to a point where I could start to rebuild something new, gentler and more forgiving.

Because I’d already read so many other accounts of how things had been for other people, and because I’ve been around long enough to have experienced a lot of ups and downs, I was under no illusion that receiving my diagnosis would magically transform my life into some fairyland, or that I would miraculously be able to access beautiful support or that all the ghosts from my past would reappear and apologise for all the years they’d told me to work harder, do better, or whatever, or that they’d explain that they really didn’t know how difficult life had been and they wished they had. I was, of course, right to hang on to a healthy skepticism that things would miraculously “get better” – one advantage of being a bit old and a bit logical is that a belief in magic and sparkles and fairy dust is not on the agenda. This process of readjustment to my new knowledge and rebuilding my new life is not going to happen overnight, and nor is it going to happen at all without considerable effort from me.

There is also the burnout to consider, and my mental health in general. At my follow up appointment I was advised to book an appointment with my GP to discuss my mental health in general and where to go from here. I wonder whether there will be more referrals, more discussions, and to what extent maintaining any semblance of mental wellness is, for me, going to be a lifelong task. I suspect only time will tell, as I adjust to the knowledge that I am autistic, as I learn what works, and as I start to try to work out what I’m going to do with the rest of my life – that is currently a very big question on my mind, both in terms of what I am able to do, and what I might actually want to do.

But, at this juncture, I am trying to identify how things now are, eight weeks on. It’s almost in the spirit of keeping some sort of journal, perhaps to refer to later, to measure progress. I look back now to what I wrote in Tiny Glimmers, just over three months ago, and, although it might not feel like it sometimes, and although my life still appears to be rather poor quality in many ways, and terribly terribly limited, I can see that things are generally better, and that I’m achieving a little more. I also have the confidence of my diagnosis, the feelings of validation that it gave me, and just that tiny bit of support I’ve had (help with forms, a follow up appointment, reassurance that I’m correct on many things and not going crazy, and suggestions for what I might do next), which have made a massive difference.

Interestingly, when I wrote Tiny Glimmers, I’d been trying to organize my paperwork and sort out my jobs lists and just get things a little more organized. I did the same yesterday, so maybe this is part of the process of taking stock, moving on, and trying to consciously plan and be proactive in life rather than just reacting to crisis after crisis and just “coping” whatever way seems most possible at the time. I did mindfulness meditation for several years (and have not ruled out returning to it when I’m in a more suitable place for it – now is not the right time) and one exercise that I found useful and adapted was to “check in” with feelings and to notice how they were. I adopted a method, during silent practice sessions, of using some of the time to analyse how things were, both physically and mentally (I know the two are not entirely separate systems, but I found it useful to examine each separately because my physical and mental health are so wildly different in their presentation – my physical health and fitness is probably on the “better” side for someone my age in my circumstances, and my mental health is certainly substantially worse).

So, I’d sit and take note of all the various bits of my body, usually picking up on various niggles caused by 50K training runs and the like, trying to work out whether the hip-strengthening work I was doing was easing the ITB (iliotibial band) issues I had for a brief spell, establishing whether my breathing was getting better with the new inhaler, that sort of thing. Mental wellness was, of course, more complex and involved trying to work out exactly where I was on the mania-depression scale, whether I was sleeping, eating properly, levels of anxiety and suicidal ideation and so on. But the exercise was helpful, because it enabled me to decide either to alter my training schedule or do more targeted exercises (physical) or to turn down or cancel things to remove pressure (mental). I had, without knowing it, developed a very basic knowledge that I needed to conserve social and sensory spoons. The “checking in” process really helped with that, and was one of the positives that I drew from the mindfulness I learnt in an attempt to prevent me relapsing, once again, into severe depression.

And now I’m using the “checking in” technique over a longer timescale, and I observe that although my mood and functional abilities are still very wobbly, and still varying wildly from day to day, the good days are better than they were, and the number of really really bad days has lessened. Like the tiny glimmers I observed back in January, there are little fragments of a new life that are now starting to show themselves occasionally, little moments where I am interested in SOMETHING again, and feel that one day I might have the energy to rebuild life and actually make it a bit better, rather than just surviving day to day, and, sometimes, hour to hour. The person who wrote Tiny Glimmers would have looked at the person typing this now and seen a veritable superhero – out of the flat now twice a week on average, starting to think about the future because I’m starting to think that I might actually HAVE a future, and making very tentative plans for the new life.

I know that everybody’s circumstances are different, and that there are many external complicating factors (burnout, family circumstances, comorbid conditions, reactions from others, and so on) during the period following an autism diagnosis. And I know that what I write here also varies wildly as my mood fluctuates and as I try to come to terms with the past and plan for the future. I’ve read accounts and heard from other people that it will be a year or so before things are likely to improve significantly, as my autistic brain is using a massive amount of processing power just to adjust to my new identity and therefore I have less energy for other things. However, using the best powers of logical analysis that I can summon, and viewing the evidence in my own life and in past posts of this blog, I can say that things are a little better now than they were a few months ago. It’s not dramatic – it isn’t “Hey, here’s an autism diagnosis – problems all solved” (and, to be honest, if it was like that then I’d be a little concerned because it’s so unrealistic), but it has made a noticeable difference to my life in a generally positive way. It’s slight, and it’s an upward trend rather than a continuous ascent (there are still a lot of sad and angry bits to work through), but it is, nonetheless, an improvement.

The Background

At the beginning of August 2016 I was living a normal life. Maybe not “normal” in the sense that many would call normal, but normal for me. I’d just turned 45, my husband and I were about to celebrate our 14th wedding anniversary, and we’d still failed to unpack or sort the chaos in our small flat following a rushed move a couple of years earlier. I spent my days studying when I could, playing music, running, being with our animals, and forgetting to eat lunch. All as usual.

I had, however, started to feel unwell again during the previous year. I’ve struggled with my mental health for decades, and was diagnosed first with anxiety and depression, then later with bipolar disorder. But I’d been reasonably stable since around 2013, had started to play the viola in orchestras again, and had generally spent much more time out in the world, reconnecting with friends, trying to rebuild my life, in the hope that I might one day be able to work again and be back to some sort of genuine “normal”.

But my health had started to decline. I’d had to drop a concert and several chamber music sessions, withdraw from my Open University study yet again, pull out of some races I’d planned to run, and by July I’d been back to my GP and picked up a prescription for the medication I’d successfully come off in 2013. It seemed obvious that I was headed for another breakdown, another episode of depression.

However, looking back now, there were things that didn’t tally with the descent into breakdown. For many years, I assiduously kept a mood diary. Just a simple cross in a box each day, to indicate an elated or depressed mood. My mood was still reasonably stable. A little under, but nothing that would indicate a severe mood shift. On the same chart I had a box into which I’d write a “score” for anxiety each day. The anxiety measurement was consistently high, and rising. That anxiety perhaps explained why I spent so much time feeling sick, why I would suddenly panic and shake for no apparent reason. I needed to calm myself somehow.

I was also perpetually exhausted. Going out to rehearsals sapped my energy and left me worn out and needing to sleep for days. I couldn’t drag myself out of bed much before ten or eleven, even on the best mornings. I’d go shopping to the supermarket and buy a small trolley load of groceries then come home and need to sleep for a couple of hours before I could put them away. That would then be me finished for the day. Going out for lunch or dinner would entail a two day recovery period. I’d had times like this before, but things were getting noticeably worse – no matter how well I ate, or how much mindfulness I practised, or what CBT tools I used, I was bone-numbingly exhausted whenever I went out.

A few people suggested chronic fatigue syndrome, but I knew that wasn’t right. I was still running, and once I’d recovered from the exhaustion I could easily do a 50K training run. Although I was really struggling at races – at the Brighton Marathon expo I’d had to take my husband with me to collect my bib as I’d been hardly able to speak to tell them my name. When other runners chatted to me during marathons I felt my legs get weaker. I got to an aid station only 30K into an ultra (no distance for me) and was unable to get a cup of tea because I had a huge panic. I sat by the side of the trail, shaking and in tears, before eventually pulling out of the race, assuming I had the flu because I felt so ill.

But the summer was approaching. I knew things would be quieter and I’d be able to catch up on sleep and get some rest. I could also pause my training schedule, chill out a bit, and I’d planned to spend much of the summer playing orchestral and chamber music and catching up with friends. I knew it would be busy and I’d be camping, but I also knew it was something I enjoyed. I’d even bought a new tent!

And so I set off with my tent, but without any idea of what was going to happen. I didn’t know then that I was only days away from something that would start to trigger a chain of events that would change my life for ever. Neither was I aware that the next few weeks and months would be an emotional rollercoaster like nothing I’d ever experienced before, and that the biggest discovery of my life was about to occur.