Blog Birthday!

A year ago today I shared the link to the first entry on this blog, having put it up the night before but not yet told anyone it existed (I wanted to “sleep on it” before sharing). My facebook memories stated that I was “really really nervous” about it and I certainly remember it feeling like a “big thing” at the time and hoping that people would treat me gently.

I didn’t actually state that I’d discovered I was autistic until the end of the third post. The first one was hastily written and rather patchy, and I wasn’t in a great place mentally at the time. I’d originally intended to wait until I had a formal diagnosis before I “went public” about being autistic, but my first assessment going so badly wrong meant that I had to change plans.

When I first set the blog up the title was simply “Finally Knowing Me” and I didn’t add the subtitle “An Autistic Life” until after I was formally diagnosed and started to become much more confident about the whole thing. I also didn’t know about tags and categories on the blog – just posting at all was a massive deal and I had to get my spouse to sit with me throughout the entire process in order to be able to do it at all.

Initially I didn’t post anything at all without him reading it first. I wasn’t confident enough. I was afraid of getting things wrong. I still am sometimes, and I want to write all sorts of posts about all sorts of things, but I also need time to absorb everything that has happened during the last 16 months – I find it hard to believe now that just 17 months ago I didn’t have the first idea that I was autistic and had very little knowledge of what autism even was. It has been a steep learning curve.

And I’m still learning. Following my diagnosis, just under 10 months ago, I became more confident about joining autistic groups online and interacting with other autistic people. Since then I’ve also been through an ADHD diagnostic process as well. There is a constant stream of new information, of new things, of articles and tweets and facebook posts and blog posts and so on. I have hundreds of links saved, so much still to learn and analyse and think about.

And I still wonder where I might fit into this world of neurodiversity, and what I might eventually contribute and how far autism will continue to be an interest I pursue in that “very interested” kind of way, and so on. For now I’m blogging less than I was, partly because I have needed a break for the sake of my health (I was beginning to become exhausted) and I’ve needed to take a step back, partly because I’ve become aware of so many more issues since I started blogging and I want to start to investigate and research more thoroughly (I need to read, I need to think, I need to learn – then I’ll be in a better position to analyse and write), and partly because I’ve been starting to rebuild my “real world” life a bit (getting back to music and running and seeing a few actual people from time to time).

I feel I have time to do some of those things now, in a way that I didn’t this time last year. I got frantic in October as I saw the number of views here plummet (as they would, since I wasn’t generating new material, and I was engaging less and less online as my health took a nosedive – I’m also a terrible publicist and not very good at publicising this blog beyond sharing each new post to facebook or twitter) but I forced myself to stop fretting. If only two people read each post then so be it, if someone “unlikes” the facebook page each time I post then so be it!

Which takes me back to a year ago. To the point where I decided that I HAD to start explaining what was going on in my life, and that I HAD to be openly autistic. And to the point where I concluded that even if nobody believed me and all my facebook friends unfriended me and dumped me for claiming the identity “autistic” for myself without official permission, then that was the way it would have to be.

That was the point at which I could no longer pretend. I saw it as a two way choice – either live openly and freely as an autistic person (and probably go on incessantly about it for a while), or kill myself. The former risked me ending up getting laughed at or disbelieved or alienated (all of which were potentially reversible), the latter ended up with me being dead (which, of course, is irreversible). And so this blog was started, as it was the best way I could think of of making the information available to people.

As it turned out I wasn’t disbelieved or anything else, rather the opposite. And this blog has since grown into something I’d never have expected a year ago. I wrote 170 posts in the first year of its existence (this is the 171st), which I’d never have imagined when I started out.

Who knows where it goes from here. I know it’s not finished yet. I know there’s more I want to do. I know I need to give my head processing time and that life continues to change. I know there is SO much more to learn, and that some of the issues surrounding autism and being autistic are complicated and that many are controversial. I don’t cope well with conflict, which means that I have to consider how “activist” I can be before it becomes seriously detrimental to my mental health.

I know that lots of people also produce vlogs and that accessing information presented only in speech is exhausting for me because where reading is something that takes very little processing for me, speech takes a great deal and I tend to save my “speech processing spoons” for real life interactions, which is when I need them most. Perhaps as I continue to recover from burnout this will improve.

My own life is also still very chaotic. We live in chaos, in a constant state of mental fragility, on a financial knife edge, everything precarious and uncertain and unstable. I’d like to use some of my energy to try to improve that a little if I can. The burnout of 2016 meant my life almost completely fell apart – I’m still picking up the pieces and trying to stick them back together in some sort of sensible order. It all takes time and energy.

My spouse assures me that it will all be sorted eventually (he’s an optimistic type), and also reminds me that as far as autism and autism advocacy and so on is concerned, it’s still really early days for me. I look at the work of others and feel very far behind, but then I realise they’re often months or years further along their own journeys and I’m still really new to all this.

To those of you still reading, and particularly those who’ve been reading from the beginning, huge thanks. Sending virtual first birthday cake to you all!

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October

October has been a tricky month. My blogging abilities finally ran out. My spoon rations finally fell below the numbers required to maintain this blog. I was forced to take a break and to deal with life and there was no energy left for blogging.

I am still recovering from what has been a tough few months. My head is still only sporadically clear enough to achieve very much of anything. Depression is threatening. I am trying to seek help, which is proving exhausting, triggering, and difficult. I have finally reached the point where my head needs a pause to assimilate all that I have learnt about autism in the last year and a bit. Processing time. A reboot.

I feel I’m failing here and should be able to hold it together better – this is probably a hang up from decades of being told I can do anything and I’m strong and capable. The truth is that I am not, and I currently don’t have the energy to do more than crawl out of bed some days. I look at the blank days on the blog calendar but I am mostly powerless to fill them, or even to advertise old posts. It feels like negative achievement, like going backwards. My energy levels are very variable though. I need to focus on self care and getting through the days.

There is a great chaos in my mind of things that I want to discuss, things that I want to blog about, but I currently can’t. There have been successes (playing music and returning to running half marathon distance (slowly)), but these things use vast amounts of energy for me and I have not had adequate recovery time. I’ve also been in touch with family members, seen my mother, communicated with my father who is in the midst of chemotherapy, been out and about for coffee and shopping a bit more, and been trying sometimes to take pressure off my husband who is still working seven days a week. This all takes energy.

Going back to the mental health services to ask for help has proved triggering and difficult and I still don’t know where it will lead. I’m certain that in addition to being autistic I also have ADHD, but the process of obtaining a diagnosis is not going smoothly thus far. I still have no access to appropriate counselling or medication – the process of trying to get either is draining in itself.

Social media has not felt as safe and supportive as it sometimes does – I sent out a call for help on facebook and received some hurtful and gaslighting comments from people I counted as friends. One is now blocked, several I have filtered, some might remain so, some will not but will need explanation I’m not currently able to give. Over two weeks after a huge meltdown I am only just returning gently. The bruises I inflicted on myself that night are almost healed. I will sort things when I have the energy, but that is not now. I’m finding twitter almost impossible, the back and forth nature of it too much like “conversation”, which I find much harder than simply typing a paragraph. The short nature of tweets breaks up my thoughts and I can’t focus on threads and so on. I have, however, taken to Instagram – the visual nature of photographs is working better for me at the moment.

I am conscious that I still need to respond to comments here, some of them wonderful, thank you. There are many things to which I want to respond, but simply can’t yet. I will as soon as I’m able, I promise. I’m missing discussion on Chris Packham’s TV programme on autism because my brain won’t process what I want to say. I have so many thoughts, but I can’t currently form them into anything I can publish. I also had many and various thoughts about the “me too” hashtag on social media, thoughts and feelings that kept me from participating in the whole thing. And I’ve had times of serious gender dysphoria in the last couple of months that I’ve had to find ways of dealing with. There are so many complex issues swirling around in my head and I’m trying to sort them out as best I can.

I feel like I am missing the Zeitgeist somewhat. There are lots of posts going round about autistic hyperempaths, to which I can’t relate because empathy doesn’t come naturally to me and I spend a lot of my life working really hard to try to understand feelings (both my own and other people’s). I want to explore the ways in which I fit autistic stereotypes and the ways in which I don’t. But my brain won’t currently cooperate. There are so many things to write about, so many. So much to explain that I want to explain as fully as I can. And so much of it is triggering and difficult, and I fear conflict, which makes it even harder.

I need time. I need space. I need to organise my thoughts. I also need to organise my life – I have now landed us with a summons for non-payment of council tax, not even because I didn’t have the money to pay the month’s instalment, but because my executive functioning was so poor that I couldn’t make my head work to do the job. My spouse has also had to type e-mail responses for me to copy and paste and has had to complete student loan deferrals and so on because I have simply been mentally paralysed by such tasks.

There is much still to discuss. There are many things I want to blog about. I’m trying to make notes when I can. I’m trying to think of ways of explaining things to people. I’m trying to work out where things go from here.

But I’m also trying to hold some semblance of life together. Things are difficult right now and I don’t know when this difficulty will ease.

I will return when I can.

Variability

Today has been an OK day.
Not amazing,
Nothing much achieved,
Just clothes
And a bit of lunch,
But fine, OK
Perfectly contented
Just to be.

Yesterday was miserable.
I didn’t want
To exist
At all.
Really depressed,
Really low.
Not seeing any value
To my life
Nor any point
In staying alive.
Desolate.
Hopeless.

The day before was nice
I visited my best friend
Had coffee with my husband
Bit of shopping
Good stuff
Nice dinner.
Contented
Fine.

The day before was impressive
Coffee and breakfast
First thing
Cheese and mushroom toastie.
Two lots of shopping
Trousers, washing powder,
Bath foam, food.
All good stuff.
And then a 12K run.
Successful, good day.
If all days were like that
Life would be worth it
Totally.

The day before that
Tried to make tea
Couldn’t.
Drove to town, parked.
After three different coffee shops,
All too busy, frightening,
No words, even to ask for
A latte, which is what I always have.
No hope of buying food.
Returning home
In tears.
Fighting the urge
To damage myself.
Not able to eat.
Seeing no hope.
I’m a jobless, childless, useless
Person in their 40s
Who cannot even
Get a hot drink for myself.

This is the variability of my life.
This is the difference in capability
From day to day.

And I never know
How the new day will be.

And I struggle desperately
To imagine how life
Could be any different
From how it is
In that moment.

When it is good
I make plans
Based on the good persisting
And I imagine
Things will improve
Consistently
And I can achieve
So much.

When it is bad
I see no way
It is worth staying alive
And I have to fight the urge
To give up.
Sometimes
Taking it
One hour, minute, second,
At a time.

This is the variability
Of my life.

(And is also why
This blog
Is so unpredictable.)

How To Be

I’m aware that this blog is becoming a bit erratic. There is still the story of my diagnosis to complete. There are hanging bits of part stories about discovering I was autistic. There are still random bits of semi-poems intermingling with journal entries. And I have yet to write about significant topics in a way that I eventually hope will be properly useful to others. It’s all a bit of a mess really. And I still have comments to respond to, and so many times where I’ve stated that I need to write a whole blog post about something and haven’t yet. But I can only do what I can do. My spoons are often somewhat limited and I work pretty much to capacity at all times, so I can’t do more.

And that’s just on the actual blog. Inside my head it’s even worse. There are fragments of posts, ideas, notions, concepts and so on. I have note after note after note on my phone, half-typed half thoughts about various things. It feels like I need a year or more to go through them all and construct coherent writings from them. There is so much to do, I’m so behind with things that I need to do to keep my life just about ticking over. And there never seems to be enough time, and by time I mean the sort of time where I’m functional enough to achieve things.

Maybe, however, this erratic situation, this state of chaos, is actually reflective of my own state of mind and my own current situation, which is also erratic and chaotic. Over a period of 24 hours last week I went from hating being me and not wanting to exist, to being content and still feeling this huge relief of realising who I am. I am still struggling to speak or get out of bed some days, but can be quite capable on others. And I have also realised over the last couple of weeks, that when I am out of the flat, in public, with other people, I have a situation that is still not resolved, and not even close to being resolved.

I do not know How To Be.

The problem is this:

I have always been regarded as somewhat “eccentric”, and even, maybe, some would say, a bit weird. That’s OK, I’m cool with that, it’s not a problem to me, I’ve dealt with it long since. After over 4 decades of being a bit on the interesting side of things I’m pretty used to it. I got really upset about being bullied and so on at school until I was around 15, but by then I’d largely learnt that it was just part of life and although it wasn’t much fun, I’d learnt to act “normal enough” to survive out in the world. I’d learnt to live with it, to cope.

The problem, of course, was that in learning to act “normal enough” and in learning to cope, what I’d actually done was literally learnt to act. I’d built a mask, and a pretty effective one at that. And the mask that I built was one of a rather strong and confident person. I wasn’t the stereotypical autistic girl “flying under the radar” by sitting quietly in the corner in the class, unnoticed. I wasn’t failing exams or dropping out of school. I was strong-willed, brash, and externally confident (even internally confident to an extent, because however much of a failure I was at friendship and sport and so on, I could learn things and pass exams reasonably easily, so that was what I did). I was told that I was capable and could achieve great things (largely because of the exam results and my capacity for learning things), and so the mask that I built was one of a high-achieving confident young woman.

However, this mask came at a price, and that price was my mental health. Constantly “being strong” and “achieving” in the way that I did in my early 20s was breaking me inside, and by the time I got to my late 20s I was very very ill indeed, heading for the serious episode of burnout at around age 30, from which I never really recovered, and my life was falling apart.

Up until last year I continued with the masking process to a considerable extent while out in the world. I continued to believe that the strong me was the real me, and once I’d recovered from being mentally ill (I really believed I’d get better at some stage) I’d be back to full strength. However, that continual masking was breaking me yet again, and, perhaps inevitably, I fell apart again completely, in the summer of 2016. And by that time the world had caught up sufficiently for the events to occur that eventually led to me being diagnosed autistic.

And, because of the sort of person I am, having discovered I’m autistic I’m determined to BE autistic. I don’t consider it something to hide away, I don’t consider it something to try not to be. It’s a huge part of my identity, and after over 4 decades being “somebody else”, the relief at being a more authentic version of me is huge. I suddenly realise it’s OK to allow myself to eat the same thing day after day after day if it makes me feel better, I’m allowed to stop forcing myself to take part in group conversations until I’m so sick I’m at the point of collapse, I can stim and fiddle with things and know it’s not me being wilfully annoying but is just part of my neurology, and I’m finally learning how to be myself after decades of trying to be the person society expected me to be and failing at it.

Which is all very well when I’m at home, or with tolerant friends or someone who can care for me and explain. And is absolutely fine when I’m in safe environments and have enough spoons to take care of myself. All very lovely – in theory all I need to do now is to be my fabulous autistic neurodivergent hand-flappy rocking-back-and-forth sunglasses-wearing eye-contact-no-longer tell-it-like-it-is self! Neurology explains everything, no more need for acting! Yippeeeee!

However, I’m a grown up person. I have to live in the world. I have to go out to shops to buy food. I have to be able to deal with other human beings if I want a life beyond the television and the sofa. I want to participate in activities that will be full of neurotypical folk who think it’s great to have a spontaneous chat about nothing at all and that such a thing takes no effort, who sit and stand too close to me for comfort, who are irritated by my stimming, who will expect me to use polite social niceties that mean something to them, who don’t even know what being autistic means, and who mistake my lack of social finesse, my sometimes inability to speak, my lack of eye contact, and so on, for rudeness or disrespect or similar, which, of course, it isn’t, it’s just that my natural way of being is different from theirs.

And so I come up with a dilemma. As I’m starting to emerge from burnout and beginning to go out into the world again a bit more, I’m finding that there are times I slip back into the old mask, which is probably inevitable after 4 decades of living that way and it becoming such a practised part of my act. It’s very obvious when I do though, because I start to feel very ill and bad rather quickly and I don’t have the stamina to maintain it for very long. There are also times when I catch myself doing something really obviously autistic (like losing speech or flapping my hands or something) and realise that if something went wrong or somebody challenged me, I’d be in deep trouble without being able to explain properly what was going on and with no carer on hand to help. And how DO you deal with a stranger who is standing so close to you that their “person vibes” are making you feel ill, when they don’t even understand the concept of “person vibes” (which, incidentally, is a term I just invented now)? They think you’re being awkward, but you’re not, it’s just that you can’t cope with that much person that close in that time and place.

I have no answers at this stage. But I’m coming up against the same problem that I read about from the parents of autistic children, but for myself, not a child. I’ve seen discussions about the extent to which autistic children should be pushed and made resilient and able to cope in life, and the extent to which they should be encouraged to be their fully autistic selves with all that that entails. I’m now considering to what extent I need to continue to use the mask I’ve developed in order to survive in the world and to what extent I can allow all my autistic traits and tendencies to dominate. On the one hand, trying to make autistic people “look” neurotypical can be massively damaging to mental health (don’t I know this from bitter experience), and how well we “fit in” or “look normal” is no measure of success in an autistic life because it denies who we are and can cause huge burnouts, but on the other hand we have to survive in the world somehow and that needs a certain amount of resilience and coping ability, especially given how little support there is in most societies for autistic people, particularly those of us who are adults. Add on to that the complications of late diagnosis and the concomitant identity crisis that arises from this huge change in life, and it’s easy to see how difficult it is to know how to proceed from here.

And this is not just about societal attitudes, but about practical survival and physical health. I’m not at the stage where if the supermarket discontinues my usual food that I don’t eat at all, but I did sit and cry for half an hour the other morning and declared that I wouldn’t eat or drink that day because we’d run out of the milkshake that I usually have when I first get up. My autistic brain said NO in big shouty letters, and I had to use my rational “learning” brain to argue with it. I had to allow myself to recover from what was basically a mini-meltdown over a milkshake, and then gently persuade myself that I was going to eat and drink and it would be OK to drink something different until my husband could get to the right shop to get the right sort of milkshake. This all takes energy (and, in my case, a very understanding husband), and it’s nobody’s fault – it’s just the way my brain works being at odds with what I know to be good for my body and overall health!

And going out into the world and coping with everything that the external world throws at me takes even more energy, even when people are trying their utmost to understand and be helpful. I’m quite good at it because I’ve been practising for a long time and I’ve learnt a lot of social skills which I can maintain quite well for the duration of most social events as long as I get enough downtime in between, but I’m also determined to be as autistic as I need to be where possible, because it’s so much easier, more relaxing, and SO much better for my mental health.

Also, while knowing I’m autistic is an amazing liberating relief, and while I really like being autistic me because it’s so natural and right and comfortable, I also rather liked the strong capable mask person (which is possibly understandable – since I created a persona it probably made sense to create one of someone I liked rather than someone I hated). I don’t want to lose some of those strong bits (being “tough” is something I enjoy in many contexts), and I still need some of that resilience to survive and to live any sort of sensible life.

However, I know that, aside from the briefest of interactions, I have to be open about being autistic. I read of people who hold down jobs and don’t tell their employers that they’re autistic – that wouldn’t be possible for me as I’m too obviously different, and at my best I can maintain that level of mask for only about 3 days absolute maximum, even when I’m going home in the evenings. In the past the jobs have just failed, and I’ve lost them. Without significant and noticeable adaptions there are things I simply can’t do. At the moment I’m not even close to being able to work, but if that ever changes then there’s no way I could hide such a big part of me. I can currently act neurotypical for an hour or so at most these days, certainly not long enough to hold down a job!

So I’m now stuck in a bit of an inbetween state, trying to work out where to go from here, trying to work out how I can take this new discovery, be myself, be openly autistic, enjoy the benefits that brings to me, even manage to advocate for other autistic people and educate others about autism, but still manage to live a life that doesn’t mean I’m sidelined for things, or unable to participate in many of the sort of events that make life interesting and worth living.

This post has turned out to be more a list of questions, of musings, of ponderings, than anything else. Maybe, a year on from discovery, six months on from diagnosis, and slowly emerging from burnout, this is a phase I have to go through. I have to ask the questions before the answers will start to emerge. I have to consider how I’m going to live my life, what I’m going to push myself to do, how much I can ask for adaptions to do things I’d be unable to do without them, how much I’m going to give up on some things because it’s too much, and where the balance will eventually lie. Maybe there will never be a full balance, but some sort of compromise between the bit of me that craves adventure and activity and the bit of me that needs solitude and peace.

And after two thousand words of analysis and consideration…

I still don’t know How To Be!

I am still having, consciously, to make decisions about whether to present the old mask to people, which is practised and known and I can do only for short lengths of time, or whether simply to “be myself”, which is new and unfamiliar to me and others and requires explanation and education but is so much more relaxing and feels so much more honest and authentic.

I suspect I’m still learning, trying things out, sometimes getting it wrong, sometimes getting it right, discovering what works and what doesn’t. I suspect that learning How To Be as an authentically autistic person who can actually manage to do things out in the world without getting constantly broken will be an iterative process, and I’m still very much at the start of that process.

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!

Packing

To return to the place
Where my old life ended
And my old self
Disintegrated
Into a million tiny fragments.

I messaged a friend
A year ago
And said
“It seems like I might have
Some sort of autism”

I laugh now at the terminology
And ponder what “sort” it might be
I’d quite like it to be purple
With a side order of cheesy chips
And a glass of beer.
Maybe also a beard
And nice eyebrows!

I digress

A tweet set me thinking:
Do I have a love-hate relationship
With this place?
I’m not sure.
I’m not given to loving
Or hating
Anything much.
They always seem
A bit strong
And the words are loaded
With overwhelm.

But

I got it.

The paradox in my head
About this place
At this time of year
After the events of August 2016…

Two words
Describe it
Perfectly for me

Supportive
And
Traumatic

The support of good people
I know they are good
My brain tells me
But they are still people
And
As always
With a crowd of people
I get that sense of
Disbelonging
That I always have.
No matter how much I belong
I never do.
And if I feel I might start
To be part of something
I get uncomfortable
And withdraw.

The trauma of multiple meltdowns
My life falling apart
The eventual admission
Of just how disabled I really am
And that to return
I need adaptions
I can no longer be
“A normal customer”
And I know the truth
About my life.
The eventual comfort
Of knowing why I can’t
Do what most people can.

I have nearly cancelled this trip
So many times.
Decided I cannot go.
Too much.
The risk of meltdown.
The inevitability of speech loss
In a place where face to face interaction
Is valued.
At what point do I just give up?

Apparently not yet.
Because I have started packing.
To return to a place of

Unsettling support
And
Reassuring trauma.

Where all the feelings get intermingled.

And the routine
Is simultaneously
Comforting and constraining.

The discomfort of becoming
Part of a community
Of never quite knowing
What to do
Or how to be.

But I am drawn back

Simple to say it is the music that draws me
But it is more than that.
Observing people.
Intrigue.
Maybe even as close
As I come to being
Part of a community.
Skirting the edges,
Watching from the sidelines
Because throwing myself
Into the middle
Breaks me too badly.

I cannot keep up the acting
Or make so many conscious decisions
Or remember how to chat
Or cope with the noise
Or concentrate that hard
On doing the right thing
Or on explaining
Why I am not doing the right thing
For days on end.
It is too exhausting.

Adaptions are being arranged.
Separate eating.
People knowing I am autistic
And need time out
To recover.
Disclosure not optional
For me.
Essential.

It feels strange.
After so many years
Of “just work harder”
To realise that I can’t.
And the only way I can do anything
Is with adaptions
To enable me to cope.

I feel sad that I cannot join in
“Properly”
But I have tried this
For so many years
And always the result
Is disaster.

Prior to my mask disintegrating
I could do 3 days
Before meltdown or shutdown.
Now it is more like
24 hours
Before I need to be alone
To recover.

But I have still not cancelled.
I am still going.
Facing things that terrify me.
But going to a place
I want to be,
Even so.
I said, a couple of years ago,
That if I wasn’t ill,
It would be perfect.
(I only knew myself to be “ill”
Back then).

It’s a place where the old, “strong” me,
The heavily masked me of my early 20s,
Would have flourished
(Although collapsed upon return)
But the me of now can barely cope
Because I am so burned out and mentally ill
After so many years of masking.

And now the place is imbued
With heavy significance.

Had I never gone there
Would I still not know I was autistic?

The question hurts my brain.

I cannot cope with the notion
That something involving people
Is so significant.

That makes me too vulnerable.

Part of me wants to stay away,
Forget.
Part of me needs to go back,
Remember.

Because everything changed.
My entire perception
Of my whole life.

It is all too big.

So I shall focus only on practical survival.
Arrangements.
Food.
Packing.
Loading the car.

I shall count socks
And think about jumpers
And try to organise things
As best I can
Because I know
My executive dysfunctioning
Means I will struggle
With the most basic things
After a short time.

Even the packing is a challenge
Right now!

Doing My Best

So we have come to August. And to the month in which, last year, people started to suggest to me that I might be autistic.

Today is the first anniversary of me starting seriously to fall apart, to not cope. A year ago today I sat in the leader’s seat of a viola section and a remark made to me by the conductor was the last straw after three days of total overload and unknowingly masking furiously without a break and I sat, tears rolling down my face, hardly able to speak. I think I managed to say “I’m doing my best” and that was about it. I was broken. I’ve reviewed that incident in my mind hundreds of times, often berating myself for not being tougher or more grown-up, for not coping as I should have done, for not acting with sufficient professionalism, but eventually I’ve learnt that how I coped (well, didn’t cope) that day was completely out of my control and there was nothing I could have done differently.

At the time, of course, I didn’t know that this meltdown (owing to circumstances, I suspect, a quiet, inward-turned one) was the start of many more that would occur over the next few weeks, nor that it was the start of something that would change my life for ever. I just knew that I felt very very bad and that it was probably some sort of mental health issue. I assumed that I’d go off and have a little rest or something and then be back to “normal” and carry on with life as usual. So I put my viola away after the rehearsal was over and went to have lunch in the dining hall, shaking and terrified, and struggling still further with the sensory overload that I was so used to that I didn’t even know it was making me worse.

I got through the rest of the day, sort of, feeling wrong and dissociated, and trying to do what was expected of me, but the breakdown of my abilities had happened and was irreversible, and by the next morning I couldn’t work out how to dress myself, couldn’t get to breakfast, and I knew I was in big trouble of some sort. My ability to act “appropriately” had fallen apart, and all I knew was that I was a broken down mess.

Fortunately, those around me (and some with whom I was communicating online) were largely sympathetic, and some of them were also knowledgeable, much more knowledgeable than I was, about what being autistic actually looked (and in at least one case felt) like. A year ago today I was only days away from people starting to ask if I’d considered the possibility that I was autistic, having both witnessed my behaviour and listened to my accounts of how the dining room and the vast numbers of people made me feel. This, added to my long history of mental health problems was enough to convince them, and for me to have heard the suggestion from enough people to go away in investigate the possibility thoroughly and to find out what “being autistic” actually meant.

Life has never, of course, gone back to “normal” and I suspect this will be the first of several “it’s been a year since…” posts as the anniversaries keep coming throughout the next year. Had life gone back to normal, you wouldn’t be reading this blog, nor, indeed would many of you have ever encountered me. The meltdown of a year ago today set in motion a chain of events that led to the most life-changing year I’ve ever had.

A year on, I’ve learnt so much. And am still learning so much. I’m hoping that I’ll be able to go back to the same place in a few weeks’ time. I have already returned for a weekend (as I recounted in Going Back) and I’m hoping to be able to go for longer.

There are two ongoing jobs on my jobs list at the moment. One is to finish writing up my assessment for this blog (I’m doing my best with that too, and with responding to comments and so on – apologies that my brain is working on such extended timescales at the moment) and the other is to try to work out what adaptions I might need to get through a week of orchestral playing, living away from home, without completely falling apart. I went last year, as far as I knew, as a very broken neurotypical person (though I don’t think I even knew the word neurotypical at that stage so would never have described myself thus), but this year I’m going back as an autistic person still recovering from a massive burnout.

Which is a huge shift. After over two decades of progressively worsening mental health I’ve become used to the fact that I have “issues” and can’t function like most other people can, but it’s now evident just how disabled I am (and I am disabled, and by more than just society and expectations because my executive functioning is so poor and my ability to care for myself is sometimes almost non-existent – there’s another whole blog post to write about that sometime when I have the capability). And admitting that to myself sufficiently to ask for help is massive for me.

I’m still, also, very much in the process of trying to work out what adaptions I actually need. It’s already been established that eating in the dining hall is beyond my capabilities because of the immense sensory overload, but even then there are still further issues to consider and I’m only just at the start of working out what they actually are. I’m working on them as hard as I can, trying to be as helpful as possible to the people who are trying to help me in order that I can keep playing orchestral music in that environment at all. There will, I’m sure, be times when things still go wrong, and this will be an iterative process as I discover ways to cope in the light of the new knowledge. I’m also feeling a little guilty about needing any adaptions at all, having spent so long just trying to work harder to deal with all the problems I’ve had, but I now find myself in a position where I simply cannot work any harder. I’ve spent my life doing my absolute best at everything I’ve ever done, working as hard as possible, with the result that my energies are spent. My perception of myself is rapidly changing. I have moved from the stage I was at when I wrote Farewell Strong Woman and Expectations Gone, but there is still a long way to go.

As I said to a friend recently, if I say I “can’t” do something, I really genuinely can’t and it’s not that I just don’t want to. But even so, it’s really hard to adjust to asking for help (which I was never very good at) and my social skills and understanding of how other people perceive me are not sufficiently good to know when people are happy to help, and when they’re thinking that I’m just a pain in the arse and it might be better if I gave up trying to do whatever it was because it’s really beyond my capabilities and the adaptions are just too much trouble for people. That’s something I’m still trying to work out too.

What I do know though, is that life has permanently changed as a result of the events of last August, and that returning to the same place, even with the same conductor (which is somewhat scary) and many of the same people, is going to be a very interesting experience if I can manage it. The expectations I had of my future life a year ago are so drastically different from the ones I have now that it still sometimes feels like I’ve stepped into some sort of parallel dream universe and that I’ll wake up one day and life will be back to normal again and I’ll think that was a jolly peculiar dream!

But it isn’t a dream (I don’t think)! It’s a whole new life, a whole new way of viewing my entire life, right back to when I was a very very small. The old life had been stretched and stretched right to its limit (and beyond on several occasions), but that moment, just before lunchtime a year ago today, was when it finally snapped, and people were there to witness it and to make the suggestion as to WHY it had snapped. And from that point it wasn’t about trying to fix the old life, it wasn’t about continuing to try to be “normal” or taking the “advice” that I’d been taking for so long about what would help (and often didn’t). Rather, it was about starting again, with a new set of parameters, building a new life with a different perspective on the world.

And that’s something I’m still doing. A year on from that moment I’m still trying to understand and to rebuild my life – it’s very much a work in progress!