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!

Advertisements

A Big Kid!

A few days after the appointment outlined in Still Complicated my spouse received an e-mail to say that somebody had been found who was willing to see me. An appointment was made. I wasn’t sure whether it would lead anywhere, and I wasn’t quite sure how to respond to the situation, so I went for messaging a few of my friends, in what I guessed might be a gently humorous way, explaining what the next stage was:

In a twist to the “autistic adults don’t exist” scenario, instead of pretending I don’t exist (since I evidently do), or that I’m not autistic (since I evidently am), they’re now pretending I’m not an adult instead (which is probably closer to the truth anyway) and I’m going to see a child psychiatrist!

The appointment was set for the beginning of November, and since we were, by now, starting to figure that the only way to convince the medics of the “ADHD hypothesis” (although, unlike with autism, which had been a sudden thing, awareness of my ADHD traits had developed over many months and it was more of a self-diagnosis than a hypothesis by this stage) was to do the research and present the evidence, we set about doing just that. By the time we got to the appointment we were even more convinced, though, as usual, trying to translate this knowledge into spoken words to people who need more than “Well, y’know…” (because they can’t see the pictures in my mind, which I often forget) was going to be something of a challenge.

I liked the child shrink from the off. She didn’t treat me as though I was five years old, which was a relief – I’m not the most mature fortysomething, but being spoken to like I’m a kid drives me bonkers. She asked if it was OK for her to sit where she hoped to sit. She was wearing a calming black outfit that didn’t distract my eyes, she spoke calmly and clearly. And the stuff she asked was clear and generally stuck to things that made sense and were in a logical order. When she sensed I was getting overheated on something she changed direction and diffused it, and the result was that I managed to stay in the room for the whole appointment. She’d also clearly read a lot of what we’d sent, so had quite a lot of background information to start with. And she asked before shaking my hand!

As in the previous post, I’m not going to go into details right now because my head is still processing, and I’m trying to make the best use of the available energy I currently have. Those of you who read October will know that I’m still recovering from the energy running out, and that the fact that I’ve now returned to being able to blog again is a significant shift from how things have been for some while. I AM recovering, and we seem to have stopped my mental health taking a significant downward slide again, but I’m trying to take things gently and getting used to things being different, yet again, from how they were until recently.

I’d been massively stressed when we arrived at the appointment and although the appointment eventually went well, my stress levels remained high. My regular psychiatrist was also present, and the interactions with four people in the room (two psychiatrists, my spouse, me) were sometimes complicated and tiring. Fortunately my spouse was there to pick up on the bits I missed or the bits I couldn’t manage, and at some point towards the end of the appointment (although I almost missed the details because I was having to concentrate so hard), the child psychiatrist confirmed that had I been younger I’d have been diagnosed with ADHD as a child. The flippant suggestion in my earlier blog post had turned out not to be so flippant after all!!! And, on top of that, having discussed how my ADHD traits impact on my life NOW, I was given an adult diagnosis too.

Then things felt like they started to move rather fast. Health questions happened, medication was discussed, and my regular psychiatrist left the room and returned with a prescription! There was talk about it being something I might like to think about for a bit, and it being a big decision and so on. My spouse and I had done the research and had the appropriate discussions and considerations weeks before. We already knew what the answer would be.

And so, on 1st November 2017, at around 10am, I was diagnosed with ADHD, another diagnosis that I would have received decades ago had circumstances been different. The time and date get added to 20th February 2017, at around 1.30pm (when I received my autism diagnosis) as a significant point in my life.

It felt a bit odd. And several days later I said to my husband how strange it was that I was quite comfortable going round telling the world that I’m autistic and that felt pretty much normal to me, but that it felt a bit odd saying that I had ADHD! However, a week and a half later (probably almost two weeks by the time I manage to publish this post) it’s starting to feel right and OK and fine and much less odd. I already knew I did have ADHD, but the official confirmation, like with autism, made a big difference to me.

And I now have some medication that might help to make a bit of my life a bit easier. There’ll be a blog post to write about medication at some point I imagine and it’s still really early days on “the stuff” as I’ve been calling it, but so far signs are very promising. I’ve only been taking it just over a week and we’re still analyzing effects and there will be discussions in the future of dosages and so on – yet more things for my mind to process, yet more things to learn and observe and so on.

And it’s another beginning of another thing, a new thing. In true autistic style I’ve become “interested” in ADHD (“interested” in the sense of “when I get interested in something I get VERY interested” interested) and you might notice this blog wandering into areas of neurodivergence that are not exclusively autism-based from time to time.

Still so much to learn. Still so much to discover. Still so much to try and interpret and explain.

And the medication? Is methylphenidate. Yes, the stuff that’s in Ritalin!!! I’m not actually on Ritalin itself, but a slow release version called Concerta. However, the throwaway remark from last year now sounds rather different because I HAVE (almost) “ended up as one of those ‘Ritalin kids’”!!!

I’m somewhat large and I’ve had rather a lot of birthdays, admittedly, but I was diagnosed by a child psychiatrist!

Maybe I’m just a big kid after all!

Still Complicated

After my autism diagnosis I was fortunate enough to be given two follow up appointments with the assessor, mainly, I think, to discuss how I felt about being diagnosed autistic once I’d had a little time to process it, and also to discuss the report and finalise paperwork and so on.

The first of those appointments was in April 2017, and I know that by that stage I’d already learnt quite a lot more than I’d known in February. Having a formal diagnosis finally gave me the confidence I needed to start interacting with other autistic people, and I was starting to discover that some of these people were more like me and some less like me. I slowly started to try to work out where I fitted into the autistic community and what role, if any, I might play in it in the future.

There were things that were obvious from the off. I’m not a computers sort of autistic, nor a gamer, nor do I seek particular solace in nature. Neither am I a hyperempath, nor particularly introverted, nor what most people would regard as shy! I can sometimes be quite extroverted, I have to work hard to try to interpret the feelings of others so as to try not to cause offence, I like engines and machines and cars and trucks and planes (and yes, trains too), but even syncing my phone to the computer or trying to do anything new with this blog can reduce me to tears.

But there were other things too. And, as we started to unpick all the features of me that were clearly related to me being autistic, we started to notice that there were quite a few things that weren’t explained by autism. And as I read more about neurodiversity in general and started to interact with people who were neurodivergent in many different ways and not necessarily autistic, something else started to emerge as a possible contender for consideration.

It was as though somebody had laid a whole load of objects on a table, each object representing a trait (this trait might be a “skill” or it might be a “difficulty”). As I’ve steadily been diagnosed with different conditions over the decades, these objects have been removed from the table and put into a bag labelled with the name of that diagnosis. When I was diagnosed with anxiety and depression a couple of decades back a few objects were removed from the table, put into a bag, and taken off to be given an antidepressant pill and some CBT. But there were still rather a lot of things there. The bipolar disorder diagnosis nearly a decade ago removed quite a lot more objects from the table and quite a lot more of my life was explained, but again there were still an awful lot of my “eccentric” traits left behind.

Then autism arrived. And a HUGE number of objects were put into a brand new bag with “autism” written on it. I took the bag and started to work through the contents and to try to deal with them as appropriate (e.g. there was an object that told me fluorescent lights made me ill, so I wore sunglasses and I now ask people to turn off lights when I can). Learning to understand all these traits, sticking them all together in the “autism bag” was revelatory and changed my life massively.

However, there were still things on the table. And once the autism traits had all been removed, it was clear that there was another outstanding diagnosis that would explain quite a lot more of my behaviour as both a child and during adulthood. It seemed unlikely that I really was a highly spontaneous autistic who just randomly did things out of routine sometimes or that the times when I missed details and struggled with mundane repetitive tasks were down to autism – and these traits were having a significant and often detrimental effect on my life. Chatting to other autistics online it became obvious that the mixture of traits I had were the same as those who were identified or diagnosed as being autistic but ALSO having ADHD.

I mentioned this to the autism assessor at my first follow up in April. She said that she was unable to diagnose ADHD because it fell outside her remit. She was absolutely totally certain that ADHD was not an alternative to the autism diagnosis because she was so totally certain that I was autistic, but she didn’t rule out ADHD as an additional condition that would be worth exploring elsewhere.

So we made an appointment with my GP, which, owing to terribly long waiting lists and difficulty booking appointments, entailed a 6-week wait. We used the precious GP appointment to briefly outline the results of the autism assessment and to broach the idea of ADHD. My GP referred us back to the mental health services, who were the people who were the ones to do ADHD assessments. And we settled down to wait, again.

Forms arrived a month or so later. I was away at the time so we didn’t manage to complete them straight away, however, eventually, in September, we completed Formageddon Round 3 – another set of questionnaires for me, a set for my spouse, and a set for my mother. I might write the process up in more detail at some point, but not today.

And so, at the start of October, I was given an appointment at the mental health services for what we believed would be a relatively straightforward ADHD assessment.

It turned out a bit differently from what we expected. I’m not going to go into details right now, because my head is still doing a lot of processing, but suffice to say, things changed from what we were expecting (the time and personnel of the appointment were both changed just beforehand). It turned out that I was seeing my old psychiatrist from many years back, and, of course (though I already knew this) it was in the mental health centre I’d left many years ago and had been to rather a lot at a not very happy time of my life.

The triggering effect of being back in the place, with the person, coupled with the fact that I was, on this occasion, again deemed “too complicated” (warning for picture of self-injury if you click the link), was nearly disastrous. This time, however, unlike the occasion in November 2016, my spouse spotted the signs and suggested I take a break. I spent most of the appointment outside, rocking on the pavement and communing with a pot plant with a small white flower.

When I went back in for the last few minutes of the appointment my spouse had clearly explained a lot, and my autism report, which my GP had sent with the referral, had finally been read. It had also become obvious that there was something of a vacuum as far as finding anybody who understood both neurodiversity and mental health issues, and the ways in which they interacted, well enough to give me (an autistic person with bipolar disorder) an ADHD assessment. My psychiatrist, however, did think that there was someone who could be asked to help and that it was worth a try.

I’m not sure I was wildly optimistic at this stage. It seemed like the process of finding people who could actually work out what was going on in my head and help me put the objects from the table into bags and then deal with the contents of those bags, was just an uphill struggle. I pondered whether to just give up and go home and drink stronger drink, but in the end I was curious enough to wait to see what happened next.

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.

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!

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!