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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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.

Flippant Suggestion

Very early on in the process of discovering I was autistic, sometime in the autumn of 2016, my husband and I had a brief and frivolous discussion. We spent a short while pondering what explanations would have been proposed for my behaviour as a child if I’d grown up in a different decade?

My behaviour at primary school was clearly somewhat different from that of most kids. I spent a lot of time on report, I got into trouble a lot, and I found most of the experience of going to school as a young child incredibly difficult. I evidently had some academic ability and I was a prolific reader, and I sang and played recorders and clarinet in school concerts, but I fell a long way short when it came to actually completing written work, even maths, which I struggled at until my mid-teens (this will surprise people who know me today), and my behaviour was way off what was expected.

At the time, the school did what they could, as I described in Head’s Office, and tried to find out why I wasn’t behaving “correctly” or achieving what I should have been in my written work. However, because it was the 1970s and they were primary school teachers in an ordinary primary school, no conclusion was ever reached, and I just eventually muddled through somehow, using my learning ability to adapt as best I could and to try to work out what I should actually do.

So, we knew what had happened in my real life, in the life where I was a primary school student in the 1970s. And, as it became obvious that I was autistic and that I had shown a large number of autistic traits right from being a baby, and as we discovered that my nursery teacher had remarked on my behaviour when I was 3, and my primary teacher had done likewise when I was 4, we concluded that it was likely I would have been given an autism diagnosis as a young child had I been 40 years younger. This was eventually confirmed by the person who did my autism assessment – she was clear that there was enough information about the early part of my life that I would, in the present day, have been diagnosed at around 4 years old, as I described in Circles.

However, that left quite a large gap. 40 years is a long time. Was there any sort of intermediate stage? What would have been the analysis of my school behaviour if I’d been, say 20 years younger? A halfway point between the 1970s and the 2010s? What would have happened to me if I’d been a child in the 1990s? Obviously, things would have moved on somewhat from the 1970s. I would still have been very unlikely to be identified as autistic, but we speculated, very briefly and slightly flippantly, what MIGHT have happened if I’d shown the same behavioural traits that I did in the 1970s but viewed through the eyes of 1990s adults.

We were, of course, adults ourselves in the 1990s, though mainly students and with no dealings with small children of any description. I eventually became a schoolteacher, but that was towards the end of the decade and I was a secondary teacher – I only gained limited experience (from occasional supply work) of primary age children and how people reacted to them in the early 2000s. But we did watch the news. We did follow current affairs. And, having the sort of memory that we both have, we both clearly remember stories about the behaviour of small children and the rise of a particular diagnosis during the 1990s.

“I might have ended up as one of those ‘Ritalin kids,’” I quipped to my husband! We both laughed! “Yes, me too!” he responded. We laughed again. The throwaway remark didn’t spark any further discussion. We were only bantering, wondering, throwing ideas around, and eventually we carried on with the serious business of gathering information for an autism assessment.

I didn’t think about that conversation again for a long time. The question of what would have happened to me as a child in the 1990s was just a little game of “What If?” and since we knew what HAD happened in the 1970s and we were now certain that we had found that my being autistic was the reason for my behaviour as a child, we had no reason to pursue anything else further. We had the answer – I was autistic and we were absolutely focused on getting me the formal autism diagnosis that I so much needed, and, at the time I spent most of my life buried in autism books and blogs – like a true autistic with a new shiny interest I really didn’t care much to think about anything else in life except autism!

I was also going through that really “heady” early phase of discovery, where, after decades, I was suddenly discovering so many reasons for so many things that had always been part of my life. I was reading whole books in one sitting, taking in vast amounts of information, and learning as much as I could about autism and being autistic and the ways in which being autistic influenced my life. I was still in that initial state of shock, excitement, relief, and so on and my mind was going at a million miles an hour.

It wasn’t until I finally received my autism diagnosis at the end of February 2017 that we finally stopped gathering information about my autistic traits and I started to relax a bit and gained the confidence to engage properly with the online autistic community and to start to learn about the whole area of neurodiversity and how it impacted on my life. Getting my diagnosis freed me to start looking outwards, and forwards, rather than backwards and inwards. I also started trying to rebuild my life and to try to find solutions for some of the difficulties that I was still experiencing.

And, in the usual way, I did so by research and by reading and by learning.

There was still a lot to learn!

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.)

Leaky Head

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Must be odd for them!

I wonder what it’s like.

But I’ll never know.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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