Reactivation

This blog,
Inactive for the longest time
Since it began.
Months and months
Without a post.
Comments unmoderated
And unanswered.

Apologies.
I will get to them
When I can.

So why now?
Why am I attempting a return?

The reason odd.
Makes me uneasy.
Because I am “joining in”
With something.
Or,
At least,
I’m going to
Attempt
To join in
With something.

I have generally,
Throughout my life,
Spent more time
On the edge of communities,
Observing,
Rather than actively participating.

Even when
I’ve thrown myself wholeheartedly
Into a community of any sort
I’ve usually withdrawn
To the edge
Or even departed completely
Pretty quickly.

Likewise with the autistic community,
I maintain a position
On the edge.
Observing.
Learning.

I do not know whether this is because
I find the whole notion
Of any “community”
So very very alien
To my way of being.

Or because
Everything is still so new
And I am so very very
Underqualified
To contribute.
A beginner,
Observing those
With way more confidence
Than I possess.

Maybe.

I don’t yet know
If I will have anything worthwhile
To contribute
Or what my energy levels
Will permit me to do.

To what extent can I “join” any project
As me?
To what extent will I have to mask
My true self
To participate?

The subject matter chosen by others,
The timings chosen by others
(If I even manage to stick to them)!

(Although I don’t discount
The possibility of posts
On other subjects too)!

But,
I feel it is time to try,
Time to return,
Tentatively,
To this blog.

My life
Still very much under review
As I try to figure out
What to do with
However many years
Comprise my future.

And how to live those years
As best I can
As an authentic autistic me.

How to survive in the world
And meet basic needs,
How to build some sort of life
That provides sufficient satisfaction
And is worth the effort,

And how to do this while
Spending as little energy as possible
Pretending,
Acting,
Masking.

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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!

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.

Typing The Words

Although the notion of me being autistic had been suggested by several people throughout the month of August 2016, and I’d started to research the idea seriously on the 23rd August, and then been to see my GP to get some sort of outside opinion on 16th September, by this time last year I hadn’t yet actually admitted to myself that this whole “autism hypothesis” thing was anything more than, well, a hypothesis!

I had, however, assembled a really tiny chat group on facebook, because I needed somewhere to be able to talk about what was going on, and the thought of declaring myself autistic on my main facebook wall (where most of my social life takes place) was WAY too much for me at that point. Furthermore, nobody outside of my immediate “every day” circle, or who hadn’t been there over the summer, knew what was going on. I was still getting used to the idea, and trying to explain to other people something that I barely understood myself would have been utterly impossible.

So, a few days after seeing the doctor, I set up the tiny chat group, and added just a very few people – really those who had happened to be in the right (or maybe wrong) place at the right (or wrong) time. Several were people who already knew what was going on, some had already helped me in some way, some had been through the same process, and some were folk who I simply knew I could count on because I’d been able to in the past.

The group became a sort of journal for me, although this time a year ago I didn’t know it was going to be that way. It was also, between September and December 2016, an absolute lifeline. I needed to talk about what was going on, and not just to my husband, and, thankfully, I found a way of doing so. There were around half a dozen people who endured hour after hour of me going on and on, and propped me up and kept me going through those times. I shall be forever grateful to them.

I hadn’t, at this stage, even discovered that there were autistic groups on facebook, neither had I found blogs by other autistic adults. That would come later, and even then I joined one or two groups and lurked silently, not even daring to comment, because somehow I felt like I wasn’t allowed – the groups were evidently full of “proper autistics”, real grown-up ones, not like me, who was just some random person who was a bit odd! They all seemed to know stuff I didn’t, so I silently read and learnt, because that was all I could do at that stage.

When I eventually did discover blogs, the best I could do was to follow their facebook pages if they had one. I didn’t, at that time, have a blog account that I could use, because I hadn’t set this one up yet, and, again, like the facebook groups, I wouldn’t have dared to comment. I’m still struggling a bit with the interaction element of blog commenting and even responding to comments on this blog – I need to have a very high energy day to be able to respond to comments (which, I assure those of you who have made them, I have read and will respond to) in the ways that I’d like as it takes many more spoons than simply writing a post and putting it up. This is my equivalent of presenting a paper, which I can do relatively easily on about 50% of days, but taking questions afterwards I’m still finding challenging, as I mentioned in Responding and Communicating.

So, for the time being, it was my tiny group of trusted allies, some autistic, some not, and, of course, the ever growing pile of books – once I’d bought the first couple from Amazon, the Amazon “suggestions” did much of the rest of the work, and buying books from Amazon was something familiar and easy, so that was what I did!

And, it was one year ago today, in that tiny group, that I first typed the words quoted at the bottom of The Discovery, and, after just a few weeks of suggestion and investigation, started to identify as autistic. It’s almost as though today is the first anniversary of me disclosing to myself!

I actually accepted the idea rather easily, mainly because, once I started to discover what being autistic actually was, it became really obvious that I was it. Although only months earlier I’d still just had some vague notion that autism was mainly something to do with small boys who didn’t talk or brainy computer geeks who took things rather literally or some sort of special educational needs thing or savants (yes, I was as susceptible to absorbing the stereotypes as many other people are, and I certainly didn’t believe any of the above related to me in any way, and neither had I ever had reason to wonder), as soon as I started to investigate and learn the full reality, it was obvious that it applied to me.

Interestingly, looking back, what I didn’t know a year ago was just HOW MUCH autism applied to me. I had yet to discover things that my mother was eventually to remember about my early childhood – things that I would never have discovered had I not gone for an autism diagnosis. At the time there was still a long way to go with the process of discovery (and I suspect there still is – I’m still getting moments where I suddenly realise something I’ve always done is not just “me” but is an autistic trait).

And although it felt weird because it was new, I had no problem with the idea of the identity “autistic”. I pick up from various places online that there is, apparently, some sort of stigma attached to the word, but I didn’t feel anything bad about it. I suspect that’s partly because of where I live and the people I come into contact with (there are very few of them and many are also neurodivergent or allies), partly because I had already had two decades with several mental illness labels so “autistic”, although new, and different, was, to me, just another thing to add to the list, and partly because I’d been used to being different from other people for so long, that actually it seemed pretty cool to have a name for the sort of different that I was! Furthermore, discovering that I wasn’t naughty and lazy, as had previously been thought, was such a relief that I embraced “autistic” with open arms!

And so, a year ago today, I typed the words that I’d realised, only a few weeks after the first suggestions, were absolutely correct. It did feel strange, unfamiliar, and new, in the same way that “I have bipolar disorder” had felt strange nearly a decade earlier, and “I have depression” had, a decade before that, but it also felt right, and still does. However, a year later I don’t have to type the words on a tiny chat group on facebook, and I don’t then need to then jump up and down going “fuuuuuuuuuuuuuuuck” to recover from the experience. I can type them on open facebook, on a public blog post, and I can even, now, relatively easily (as long as my words are working) just tell people.

That feels like quite a big change in the past year. And it had to be a gradual process, while my brain adapted to the new identity and I got used to the knowledge of what sort of brain I have. But the same words still apply, and these days they’ve lost almost all the “this feels a bit weird” stuff, and are now just a factual description of my neurology coupled with a big part of my identity.

I am autistic.

Lost Day

I woke early, feeling exhausted, and not a proper sort of sleepy exhausted, but an odd sort of depleted exhausted, like all the energy had drained out of me somehow and I could hardly move. I could hear birds, very very loud birds, wood pigeon calls burning the insides of my ears.

I knew I had to be somewhere today. I knew also that getting there would be difficult. I looked at the schedule for the rest of the week, which I had photographed and saved on my phone. I tried to work out what I might be able to skip without causing too much inconvenience or annoyance. My head wouldn’t think very well, so I started to try to type into my phone:

If this were real life and I’m at sensory levels of now and tiredness. Would be schedule looking.

This was how the language emerged from my finger. I knew it was wrong and that it needed editing. And I also know that when WRITTEN language becomes difficult and starts to go wrong in that way, that I’m heading into shutdown. This is something I’m starting to learn, now that I’m actually observing myself with some knowledge, rather than just declaring myself “ill” or declaring that “my head went wrong” as I have done in the past.

I attempted to speak. There was nothing. No surprise there. If the written words are starting to go wrong then the spoken ones are almost certainly non-existent.

It was still early. I still had to get a message to the outside world that I wasn’t going to be where I was expected to be. The best I could do was to message my husband a few words and hope he could interpret what I was trying to say in order to convey some sort of message to those who needed to know that I wouldn’t be appearing for rehearsals this morning. He received the following messages:

Fail now. Is. Words. Morning. Not.

Now. Schubert. Prob. Can’t.

Tell.

Write hard. Speak not. Food not. Later.

And because he has long experience of such communications, he was perfectly able to send a message saying that I wasn’t able to get to the Schubert rehearsal and had asked him to pass on the message and that I didn’t need food and wouldn’t be able to communicate for a while.

At some point during the morning someone brought me a cup of tea and left it outside my tent. I was unable to respond, unable to move from where I was curled up under the duvet, unable to do anything at all for a while. This is all absolutely normal for me at such times, which have been happening since my early childhood. My mother observed the behaviour, still remembers it well, going right back into my early childhood, and even had a word for it, zonking, which I mentioned in Losing The Words.

Having successfully conveyed a message of sorts to the outside world, my brain then simply closed off. I slept a bit. I lay there staring at the side of the tent, a bit of plain fabric being as much visual input as I could take. I didn’t move. I couldn’t move. I don’t usually remember much from these times, just a feeling of being utterly drained, no energy at all, and something like a deep depression, not being able to form thoughts properly, no ability to translate things into words, nothing. My head is simply closed for business and my body follows it. There is nothing to do at that point except wait – it’s like some sort of reset is required before my overstimulated and exhausted brain will function properly again. I don’t respond, I don’t communicate, I just lie there and breathe, nothing more.

After a few hours I regained the ability to type and to form words and typed some of the thoughts that had by then started to emerge from my head into the notes app on my phone. Having established that I could once again produce proper typed sentences, I was then able to contact the outside world by facebook without my husband having to make the sentence structure for me. It was lunchtime. I was aware that I hadn’t eaten or drunk anything all morning (and couldn’t have – something else my mother had observed about zonking was that food was an absolute no during those times, and when I have attempted to eat or to keep functioning I have simply ended up physically sick and it’s been assumed I had some sort of bug or similar).

Somebody brought food and left it outside my tent. I was unable to thank them except online, but was able to eat by mid-afternoon, and was, it seemed, by this stage, quite hungry – even though I didn’t feel any sort of hungry, once I started to eat it was obvious that I was.

It took another couple of hours for the shutdown to be properly over and a further hour for spoken words to fully return. Although I can’t always tell when I’m going IN to shutdown, or that that’s what it is (though I am getting better at recognizing it as I’m learning), it’s really obvious when I’m emerging because I start to stim again, I start to rock and to move and get back to what for me is “normal”, a state of dynamic equilibrium as I like to think of it. For me, being still either means I am masking furiously and working hard to stay still, or I am ill and in shutdown, or I am asleep, or, occasionally, that I am relaxed under a weighted blanket or completely immersed in something or similar. The rest of the time I move, and that movement restarting is always a good sign – it’s the feeling that you didn’t know something was wrong until it was solved, and the minute it’s solved it was obvious how wrong it was before!

My sensory system remained on high alert for the rest of the day – I managed to go and sit in the audience to hear some of my friends singing and playing music, but used earplugs against the applause and was deeply grateful to a friend who asked others to move away from me to give me some space during the performance.

By mid-evening I was able to drive home, where my husband had “the food” (whatever I’m currently eating we call “the food” – I have cyclic obsessions with food where I eat the same thing every day for months, and always have done) ready and waiting for me, and I spent the evening doing all the familiar routines and being with the animals and recharging properly ready for the next day.

But what should have been a day participating was basically lost to a massive shutdown, and there was nothing I could do about it. I would have liked to have been in the rehearsals that morning. I would have liked to go to tea that day. I would have liked to join in the celebratory feasting and dancing (although I knew that the feasting would have been a non-starter anyway and I’d have been eating alone somewhere quiet), but I couldn’t.

But at least I know what causes these times now, and I have a word for them, shutdown, which makes sense to me and enables me to understand what’s going on. At least I have people who are willing to understand it too and to bring me food and so on and to help me out when it happens. And I know that I’m not getting some sort of illness (as has been suspected on many occasions in the past) and that I will feel better in a few hours’ time – I just need to wait, to be on my own, and to have as little input into my system as possible.

Last year, when the same thing happened, all I knew was that I felt inexplicably awful and couldn’t even tell anyone how or why. I spent a night silently crying in my tent in the dark, without food or help, with nobody even knowing where I was because I’d lost all ability to communicate and wasn’t even able to type a message to my husband. And short of “something mental health related or maybe a virus”, I had no idea why I was like that.

This year wasn’t ideal. It’s not really how I want to live my life, missing out on good times, having to skip rehearsals, having to sit on my own because my system can’t cope with much social interaction or noise, and so on. But it is better than the distress of previous years, than the anguish of desperately trying to function, trying to make things work, having to call in with some “unknown illness”, making myself worse by continuing to try to speak or function as I “should”.

I don’t like having to live this “half life”, which is what it feels like. But knowing why these things happen means I’m much less self-blaming, much kinder to myself, gentler to myself. And simply allowing the inevitable shutdown to run its course and not trying to push myself out of it means that I actually recover more quickly and am generally healthier as a result. Maybe once I’m more fully recovered from the recent burnout I’ll be able to do a bit more – I do hope so.

It does still all feel very much like a work in progress still. I have my answer as to why these things happen to me, but I now have to work out the best way to live, which I haven’t quite managed yet.

Summer School

One of the most striking things that happens to so many of us who are diagnosed or identified as autistic late or very late on in life is that as we learn about autism and what it actually means and how it affects our lives, there is this constant stream of “lightbulb moments” where events from the past suddenly make sense and can thus be reinterpreted very differently. Those of us who grew up oblivious to the fact we were autistic but just knew that life was very very difficult (and assumed, since it was all we knew, that that was the case for everyone but that they somehow coped with the difficulties better than we did) have a lot of reframing of our past to do and a lot of moments that we can now perceive completely differently as a result of knowing we’re autistic.

A couple of days ago I was looking through my “on this day” feature on facebook, as I do most morning, and this status from two years ago appeared:

It is so nice to be alone. Away from all the other people and “group work” (i.e. HELL). Just me, York Bowen viola music on the laptop, a bottle of wine, and a box of maltesers.

I was instantly struck by my relief at being alone and my assertion that group work was hell. I decided to have a look at some of the comments I’d made on the status and they made for further interesting reading:

I’m at Open University Summer School. There are people everywhere. They’re lovely people, but I’m just not good with lots of people all at once. They all have social skills that I just can’t do. The work itself is no probs, but then we’re told to “discuss this with the people sitting around you” and “work in groups” and all I hear is noise. I don’t have the filters for it. Everyone else chats and laughs and I feel lonely and isolated. I drove off campus this evening and found a Tesco to buy stuff then just drove, with music, on my own. It was the most soothing bit of the day.

I limit parties and things because I know they use so much energy and I often need a lot of time to recover. If I was an animal in the wild I’d be a polar bear or something that lived a largely solitary life.

Interacting with people all day is just exhausting. The maths is easy, and the people are nice, but there are so many of them, and it’s so tiring having to smile and pretend to be normal all day.

This is going to be a very very long week. People keep telling me I’ll love it. I’m not loving it. I arrived and broke down in tears and collapsed. If there was a way I could get out of it I would. I hate it.

All the above remarks in italics were written over a year before I knew I was autistic. As far as I knew at that time I just had mental health problems and, at the time I believed the only current issue I had was what I believed to be “normal” levels of anxiety. The disability officer from the course had even called me the previous week to check that I was OK (having read on my student record that I was listed as having bipolar disorder) and I’d assured him that I was between episodes and that everything was absolutely fine and I didn’t need any accommodations but thank you for asking etc etc. The only thing I did check was that I would have a bedroom on my own – I have known all my life that sharing sleeping space with anyone other than people close to me and selected by me is absolute anathema and on the occasions where I’ve been forced into that situation I’ve spent the night anxious and sleepless, desperately waiting for morning.

So I set off to Summer School without any adaptions in place. And I struggled from the outset. I arrived at registration in tears, desperate already to go home, but knowing that this was a compulsory course and I’d fail the degree without it. I sat through a lecture about group work and about how we were being assessed on our interactions with the other students (all of whom were complete strangers to me) and that we had to be actively participating and not looking at the ceiling or staring out of the window because we would otherwise be marked down. The fear started to rise. My anxiety levels started to skyrocket. I remember being desperate to get out and to go home. No degree was worth this amount of torture, surely?

And, as we moved into the group work session and I sat with three complete strangers trying to design some sort of mathematical modeling experiment, trying to look into these strangers’ eyes and to “look interested” and to do all the things we’d been told to do in the lecture, the tears started to roll down my face and then the crushing panic as the noise got louder and louder and the voices of the people around me started to blur into this horrendous and incomprehensible sound and then it felt like the walls of the lecture theatre were going to crush me to death, and the inevitable meltdown happened.

I sat in the corridor outside the lecture theatre rocking and crying until someone eventually found me. I can’t remember exactly what happened next, but it became obvious that I wasn’t going to cope with being a “normal” student. Some adaptions were made for me – I was moved to a different overall group with fewer people, and it was agreed that I would always have a seat near the door or on the end of a row, not in the middle of the room.

It helped a bit, but after a couple of days I was finished. I’d also pretty much stopped eating by this stage (the dining hall was another source of noisy clattering fear and social interaction, and any acquisition of food that required any input from me was impossible for me – I stood in front of a toasting machine one morning at breakfast and cried because I just couldn’t work out how to get toast – I would have gone hungry that morning had another student not made some toast for me and put it in front of me).

I was in touch, as usual, with friends and my husband via facebook. My husband offered to drop everything and come up on the train to see whether he could sort me out and calm me down and get me eating again. The course directors were initially reluctant – I wasn’t registered as needing a carer, and they were also suspicious that my husband would arrive and simply take me home. However, it was fast becoming obvious that I wasn’t going to last much longer on my own anyway so my husband was allowed to join me and he arrived and brought my “safe” foods and got me eating again and somewhat back on track and I managed to stay for the rest of the course.

I remained very stressed for the rest of the week, but as the end approached things did improve. I self-medicated heavily with alcohol and caffeine in order to cope, and landed up in a group with some very good people who helped me through the group work and seemed fine about having to sit near the door in every room (I’m still facebook friends with them, two years on). Perversely, one of the parts of the course that many people were worried about was the presentation to a room full of tutors and other students – for me it was the easiest and least stressful part of the whole experience! This seems to be the story of my life – I find things that others find so easy that they don’t even think about them really really challenging, and things that others find challenging I often find unproblematic!

And, it’s only now, two years after the event and eleven months after starting seriously to investigate the possibility that I might be autistic and what that even meant, that I can now understand just WHY Summer School was so difficult for me, and just how disabled I am and how much support I need at times in order simply to survive. Back then I didn’t have a clue about “sensory spoons” or that not having the ability to cope with multiple conversations in a room was the result of the way my brain was wired rather than me just being hopeless. I’d never heard the phrase “executive functioning” and couldn’t work out why an unfamiliar toaster might make me cry and I simply wouldn’t be able to work out how to use it. I didn’t know just how much energy I was using coping with eating whatever food they provided rather than my own routine “safe” foods that I usually had at home. I didn’t know why the lecture on group work made me so terrified, and I couldn’t begin to comprehend how the other students could spend all day in lectures and group work and chatting at coffee breaks and then go to the bar in the evening and STILL cope without crying and breaking and sobbing and rocking in the corridor – I just assumed they were geniuses of some sort with unlimited energy and resources and that I was broken and pathetic. I never even found the bar!

Now it’s all explained. And now I have to work out what to do when I go away from home on my own in the future. I still don’t have it worked out. I’m supposed to be going away in a few weeks’ time and I need to work out what accommodations might be possible and what I will need in order to get through the week. Then I need to communicate it to the people concerned, which is even harder. I’m struggling with it, even with the knowledge I now have, and when the confirmation e-mail arrived in my inbox the other day I went into a state of abject terror and nearly cancelled. I’m still trying to work out what to do so I don’t end up with a repeat of the Summer School scenario.

And although I now know why all these things have gone wrong, I’m still less than a year into the whole “knowing I’m autistic” thing. I have no problems with being autistic – it’s simply the way that I am – but asking for help has never been something I’ve found easy, and I’m still trying to work out exactly what “help” would actually be helpful, which is another huge job on its own! And after 4 decades of believing that when I couldn’t cope it was my fault and I just had to deal with it, the change in perspective is absolutely massive.

This is still, I keep reminding myself, a process. And, as I keep hearing from those who’ve been through the same process, it will take time.

I hope I’ll be able to work it out eventually!

A Week, Actually!

It turns out to be exactly a week since I wrote the poem in the previous post. I got as far as putting that post together yesterday, but never managed to post it because my functioning let me down and I ended up with a sort of partial shutdown followed by a sort of partial meltdown and abandoned plans to do anything at all except survive.

A pattern is starting to emerge. After some big step up in activity, to a big thing that takes so much energy and generates so much anxiety, the first recovery day is reasonably OK as I’m still just pleased I managed to do whatever it was and I’m still, to an extent, hyped up by having made such a massive effort.

However, the second day is usually the worst, and yesterday, around mid-afternoon, having turned on the laptop to post what should have been yesterday’s blog post, I suddenly felt dreadful and overloaded. It became obvious that I wasn’t up to doing anything at all (by that stage I’d still not even been able to get myself a drink) and I abandoned the notion of either posting on the blog or, indeed, doing anything else on my jobs list. I tried to put it into words and ended up with this:

There’s a certain relief
When I just
Give up.

When I stop trying
To do jobs
Or write blog posts
Or “achieve”
Anything.

I then fell asleep on the sofa for a while, then woke up feeling disorientated and only semi-verbal (I could have spoken if necessary, but forming words was massively hard work).

And I felt low. Not generally low, like some sort of long-term depression, but suddenly low and exhausted, like a shutdown, though it wasn’t a full shutdown of the type I often experience. And I had one of those moments that I’ve not had in a while now, but that were much more common several months ago, where I suddenly felt that life was so very very unfair and I didn’t want it to be like this.

In the absence of anyone I felt I could bother, I ranted into the “Notes” bit of the iPad.

Why me? Why do I have to miss so many opportunities? Tonight I just want to be normal. I want the career I was supposed to have. I want to be able to go out on a Saturday night with friends and not need days to recover. I want to be able to “work hard” and that work to produce success rather than exhaustion and failure. I want to earn my own money. I hate hate hate hate being dependent on other people. I want a proper life. I don’t like having to sit in a darkened room for hours on end in order to recover every time I do anything. I’m bored. Maybe I’m even lonely. Though to be honest I’m so fucking alexythymic that I have no way of distinguishing between boredom and loneliness. I’m so fed up with having so little energy and being able to do so little. I want to work hard at stuff and I just can’t.

And so on and so on and so on. Lots and lots of thoughts of that nature.

I tried desperately to pull myself together and finally got myself a glass of water and a snack, hoping that if I ate then I’d start to feel a bit better. It sometimes helps. But it didn’t really at that point.

I then scrolled through facebook a bit more, hoping for something to distract me. I joined a conversation on a group and because my words weren’t up to much I posted a link to something (on topic) from this blog. Next I knew, the message thing pinged and I had a message from some stranger who was a mod or admin or something on the group – telling me off because hadn’t I read the pinned post and blog links were not allowed and would I go back and edit my comment.

Already low. Already struggling. I burst into tears. I messaged back telling them just to delete me and have done with it. I couldn’t find which group. I probably read the pinned post when I joined, but so many groups, so many pinned posts, so many screens of compulsory trigger warnings, content notes, worrying about pronouns, blog links, not links, this sort of post, not for this group, and so on and so on and so on. I know these things are important for so many reasons, but at that moment I felt old, I felt like someone who grew up before the internet was invented, and I’m still learning, and I can’t learn all this stuff fast enough because my head is so overloaded at the moment. Maybe I should stop posting on the internet at all because I’m clearly an incompetent idiot who can’t even read the fucking instructions properly. I’m wrong wrong wrong. Even online I’m getting the social codes wrong. What hope do I have out in the real world. Maybe I should just crawl under the duvet and stay there until I starve to death?

Remember, this was all going through my head when was basically in meltdown. Too tired even to meltdown properly I just sat and cried.

My brain, meanwhile, was reminding me that this was day 2 after doing something big. Some sort of meltdown in whatever form was inevitable. The incident with the facebook page was actually just the straw that broke the camel’s back (by the way, does anyone else literally have a little snippet of video in their head, like a GIF, of someone putting a single straw onto an already overloaded camel, in which the camel then falls to the floor, its back broken? And does anyone then imagine the work a good vet would have to do to rehabilitate the camel, all for the sake of one measly straw? Or is that just me?), and everything had been building since the weekend, and gradually getting closer and closer as time went on. I’d spent the morning stressed about a post concerning cooking from scratch, which made me feel incompetent and stupid, I’d read another post about how life was too short to moan about things changing, which made me feel disabled because my brain struggles with change, I’d read something about women wanting motherhood and careers, when I have neither, which again made me feel useless to society, I’d failed even to be able to fill the kettle to make a cup of tea, and so my bloody camel was absolutely at maximum loading capacity.

Eventually I calmed down. I hid the group from my feed, poured myself a beer, and sat quietly on the sofa. I had a couple of short chats with a couple of people online, both of which calmed me. I watched the telly. And by the end of the evening things were pretty much OK again and I eventually put myself to bed, having had a couple of longer chats with a couple of friends online (my husband was away overnight, having been out for a late evening).

And this morning my functioning level is improved. I’m in the midst of making a cup of tea, and feel like I probably need to eat something reasonably substantial, having hardly eaten at all yesterday. I might even start to get a few things done.

And I now ask why I’ve written up what happened yesterday. Why have I spent the energy basically recounting feeling a bit rubbish, when my general approach to this whole “being autistic” thing is to be positive?

Maybe just to indicate that it’s not all sweetness and light, so that others who have similar experiences can relate? Maybe to try to convey to those people who see me at my most functional out in the world, and might be tempted to think that I’m absolutely fine, that there is a price to pay for doing the things I want to do? Maybe just because it helps me to sort my head out a bit and to process what happened and to move on? Who knows?

All part of life, I guess. And I said at the start of this blog that I wanted to be as honest about it all as I could. So maybe that’s why? Shutdowns and meltdowns (or the partial versions thereof that I experienced yesterday) are part of the deal, part of the autistic life. For me, they always have been, but now I have the vocabulary and knowledge to analyse them, so that is what I do. And it helps to put a day like yesterday into perspective to be able to look at it rationally now my thinking abilities have mostly returned.

Now I just have to gather enough energy actually to post the posts on the blog! And to put them onto facebook and twitter. And to start to reconnect with the world once more. Then I need to see what are the most urgent jobs that need doing from my list because, as is becoming all too apparent, I have to do what I can when I have the energy in order to get through days like yesterday when the energy simply isn’t there!